Ya Only Live Once ... A Survivor's Journey

Great-ish news!

2012-01-10T09:56:00.003-06:00

The six weeks between my November scans and last week's scans have been laden with anxiety -- probably the most I've had about my cancer in a long while. I usually try not to think too far ahead to my next scans, and I go about life as if everything was just peachy. But this time, with the possibility of harsher chemo and forever losing my hair looming, it was hard NOT to think about them and their implications for our (my and my family's) future.

Thankfully, there was no further growth in the liver lesion mentioned in my November scans. Yay! My small left pleural effusion (fluid around the lung) was unchanged, as was all the previously seen bone mets. The chest lymph nodes remain normal in size, and the growths I had on my side/back remain gone. My tumor marker level is still within the normal range (but I have yet to see the exact number.) However, there are a few "potentially" new lesions in my liver, which are very small in size. But, the radiologists' reports say I have "stable" metastatic disease for now. Dr. Green is keeping me on Xeloda, which I've been taking since October 2009. Yay for hair ... at least for the next 3 months when my next scans are scheduled. This is great news, and I am so thankful.

But my pessimistic side got to thinking ... just how low my "great news" bar has been set. Woohoo, I get a whole 3 months before I may have to start a new chemo! And now I'm down to "Well at least it's not in my brain!" Having stage IV cancer has really taught me to appreciate every little thing. Every glimmer of hope. Three months. Slow-growing tumors. Very small new tumors. Tumors that aren't yet affecting organ function. Hair.

The reality is that I do have growth, albeit very slow. Not yet bad enough to warrant changing treatment to a more toxic chemo. It's hard to grasp, and it's hard not knowing what the next step will mean for us. Will I be sick, or will the worse thing be losing my hair? Will I be able to continue working? Will I be able to remain active in the kids' lives? Will I still be the team photographer? Will I chaperone field trips? Games, recitals, concerts? Will we still be able to travel? Hike? Run? So many questions! that only God know the answers to. For now I am thankful for all that I still CAN do. But that doesn't mean we shouldn't plan for the day that I CAN'T do those things.

Danny and I have decided (well, it was actually Danny's idea) that I will cut down on my work hours to get a better grip on our home life. We have made some changes to the office and he is learning most of what I do there. So if something does happen (God forbid,) he will not be clueless as to my tasks/job at The Pink Ribbon Shop. I will still work in some capacity, but the plan is for him to take over much of it so that I can stay home 2-3 days per week. I like the idea of it, but since I've always worked, it's taking some getting used to. Hoping to get a lot done at home! Unfinished projects, messes, piles, filing, paperwork processing, kids appointments, etc. Working full time at our own business, plus managing our busy, active family of 5 ... well, lots of "stuff" has been left undone or partially-done. I'm not the mom/wife I want to be. Need to organize and clean in order to provide a nicer home for our family.

And yet ... I've had acquaintances & friends with cancer who have, at some point, taken a sudden turn for the worse, and died shortly thereafter ... even after being "clear" for some time. That is my biggest fear right now. That my life as I know it will suddenly cease to exist. I may still be alive, but life will change dramatically for me and my family. I will be too sick to do anything and will need to be cared for. Perhaps brain mets or more advanced liver or lung mets. I feel like I want to have everything "in order" before that day comes. Of course, this kind of sudden life change can happen to anyone, at any time. I know that. Well at least having stage IV cancer gives me time and reason to think about it and prepare.

Uggh, I'm such a downer!!! Hate that I'm sounding so ungrateful for my life! Who knows, I could be the next poster girl for longevity in stage IV cancer patients! Right now I can do everything that's truly important to me. No restrictions. Thank you for that, God!

Quick Update from Kim

2011-12-02T11:43:00.002-06:00

Just a quick update. Thanksgiving week I had my usual scans and lab work done @ MDA. For some reason I kinda had a bad feeling about them prior to having them. The results were as follows ... I've got a small pleural effusion on the left side (fluid around the left lung.) This has been much worse in the past, but more recently it had completely subsided. So not the greatest news. I also have a new area bone metastasis on my right iliac crest. Other previously noted metastatic bone lesions appear stable. Tumor markers are higher than previously, but still within normal limits. A small lesion on my liver appears to be growing larger, up to 1.5cm in diameter. Concerning, and interesting that my right side is being affected now, whereas before all my troubling areas seemed to be on the left. I used to joke that if I could just get a new whole left side, I would be fine!

Anyway, here's what my options are according to Dr. Green: I could stay on my current treatment (Xeloda, by mouth, 3 in am, 4 in pm, one week on, one week off) and be re-scanned in 6 weeks to see if there's been progression of the above findings. OR, I could move on to the next treatment option and "catch it early." Normally I would absolutely be for the more aggressive treatment option. I'm a fighter, and I believe in being aggressive when fighting cancer. However, this time I chose to go with the "wait and see" option. We are really only talking about 6 weeks here. Let me have my holidays!

The reason I chose to wait is that what Dr. Green told me about the "next step" disturbs me, and for reasons I never thought would. She's recommending Abraxane, a Taxol-like chemotherapy that is given IV. I would have to travel to MD Anderson for the infusion once a week; three weeks on, one week off. She said that it's generally well-tolerated (not much in the way of nausea or fatigue,) but I would lose my hair. In the past, I admit, that I've looked down on women who say "The worst part of having cancer was losing my hair." I disagree! That's not the worst part. I always said "Bring it on" to chemo. The last time I lost my hair from chemo, it was traumatic, yes, but I knew it was temporary. My hair would grow back after the treatments ended. But this time it's very different.

When I asked how long I would be on Abraxane, she said "Until it stops working." Being the quick-minded intelligent gal I am (ha,) it didn't take me long to say "So, I'll be bald indefinitely??" To me, this seems like the beginning of the "end" for me. Nothing screams "I have cancer!" more than a woman with a big bald head! And forever? And ever? And when it stops working, will I actually go on to a less toxic drug and grow my hair back? Probably not. I am facing the very real possibility of being hairless until I die! Which is when? Who knows!

A friend of mine, when I met her shortly after moving to Texas in 2005, was undergoing chemotherapy for breast cancer and had lost her hair. I never knew her with hair. And I never saw her with hair for the remaining 5 years of her life. Surely that wasn't the worst part of a 40-something year old (wonderful) woman losing her life to breast cancer. But I can't help but think of Eveline now that I'm faced with this. Will I be like her?

Yes, I can wait 6 weeks and enjoy the holidays with family before taking the next step in my cancer journey. And maybe the results in January will be good, and I won't have to just yet! So much to think about ... will try to put it out of my mind until after Christmas.

Thanks for listening, and for your prayers.

Kim

Breast cancer awareness ... it's not over!

2011-11-15T10:10:00.002-06:00

Now that breast cancer awareness month 2011 is history, I'd like to take the opportunity to remind everyone that breast cancer awareness doesn't have to stop in October! The pink products are leaving the grocery stores' shelves, but the reality is that 1 in 8 women are still being diagnosed with breast cancer every year. Women are still dying ... yet more and more women (like myself) are living longer WITH breast cancer, thanks to the huge advances being made in treatment options. This is a direct result of research funding. The funding comes in from awareness campaigns as small as high school "pink out" sport events and as large as Komen Races for the Cure. From yogurt tops to New Balance apparel, it all matters!

I am living proof that however the money is being raised, it's working! I firmly believe that I would not be alive today had I been diagnosed with stage IV instead of stage III cancer in 2000. There simply wasn't as many options back then. Now it's been over 5 years since my stage IV diagnosis, and my doctor tells me that I have many, many options (new drugs) to still try, when my current treatments fail. And the more time that passes, the more there will be!

The Pink Ribbon Shop has made a decision to allocate all of its donatable funds to the MD Anderson Cancer Center. MDA, the #1 place in the country to receive cancer care, is on the forefront of cancer research. Although there are certainly other worthy organizations that we could choose to donate to, we have chosen MD Anderson, because we want to make a difference in the breast cancer research area. We want to be connected to actually finding a cure, by funding research. We want to be a part of MDA's "Making Cancer History!" More information to come as we work on establishing our partnership with MD Anderson -- so exciting!

October Madness and News

2011-10-26T09:49:00.004-05:00

As breast cancer awareness month is winding down, it's time to let out a big sigh of relief and also a huge woohoo of gratitude! The Pink Ribbon Shop has been crazy busy, October being our busiest month of the year, of course. We are blessed to have our little "mom and pop" online business, and we hope to this year make our biggest donation yet to MD Anderson Cancer Center. We are so excited to be a part of "Making Cancer History!" More details to come before this year's end...

It's also been tremendously encouraging to see the pink ribbon showing up in more and more places. Thank you, NFL! The NFL again this year promoted their "Crucial Catch" breast cancer awareness program by having all the players, coaches & refs wear hot pink wristbands, whistles, helmet stickers, cleats, hats, chin straps, mouth guards, etc! They widely promoted their pink ribbon fan gear with NFL game-time and website advertising, and a mail-out catalog. They again plan to auction off some of the pink items worn by the players. Can't wait to hear how much $$$ they raised for the American Cancer Society's breast cancer initiatives!

Our local high school football players wore The Pink Ribbon Shop's hot pink wristbands & armbands and/or shoelaces during their "pink out" breast cancer awareness games last weekend. (Go Kingwood Mustangs and K-Park Panthers!!) We contributed to the events by donating other pink ribbon items such as helmet stickers, wearable pink ribbons, pink ribbon tattoos, pink silicone wristbands and Find the Cure eyeblacks. Student-relative breast cancer survivors were recognized before the game (including me, mom of Christa! [Go KM4B!!]) which was pretty cool and a nice gesture by the high school. Hopefully a bunch was raised in donations! Want to find out how much was donated and where the donations went.

Speaking of football, with Danny being the head coach of my 9-year-old's little league football team, and my 14-year-old now in the high school band, our family has been living and breathing football for the past few months! Friday night high school football, Saturday little league football, and practices and game film review all week long is wearing us out! Lots of fun, but also lots of work and hard on our family time, but all worth it for the kids! Then when you add in Saints football on Sundays, well, just ... whew! We'll be relieved (and maybe a little sad) when the season ends. I'm sure there will be plenty to take football's place.

The Pink Ribbon Shop had about 10 seconds of celebrity on October 7th that was pretty darn exciting for this lifelong Jeopardy fan. A friend sent me an email (just last week) asking if I was aware that pinkribbonshop.com was part of a Jeopardy clue. I told him to not mess with me like that! Surely that couldn't be true! But he had snapped a picture (I can't thank you enough, David Bloom!!!) of his TV with the clue, right there in bold & bright Jeopardy blue: pinkribbonshop.com promotes awareness of this disease, "One pink ribbon at a time." It was a definitely an "O M G" moment! I mean, how cool is that?! I immediately headed to Google to verify that this actually happened. And sure enough, after finding the Jeopardy archives, there it was, a $200 clue in round 2 of the October 7, 2011 episode. My niece was then kind enough (Thank you, Mandy!) to locate the entire episode on YouTube (which, in my hyper excitement, didn't even cross my mind to do! duh!) And there was visual AND audio proof that it was, in fact, true. Alex Trebek spoke our business name! On TV! Of course all my work for the day ceased, as I had to call all of my immediate family and post all of the proof on our (and my personal) Facebook page. Truly amazing!

In other news ... I am scheduled to have my next round of tests/scans the week of Thanksgiving. I have been feeling pretty good, so I am expecting to receive good results! The new Xeloda dosage schedule that I've been on for about 3 months seems to be agreeing with me more than the previous one. The side effects are a bit more tolerable, although ugly. My hands are pretty disgusting looking, but I suppose a small price to pay to be able to lead such an active life with my active family. Hopefully my feeling good will translate to negative or improved findings :) ..... and hopefully I'm not sadly surprised that my cancer has shown growth or further metastasis. :(

That's about it for now. More news soon, promise! Thanks for reading.

I am woman! (again)

2011-09-14T11:16:00.004-05:00

Whew, so much has happened since I last wrote! Summer proved to be even busier with the kids than when school was in session. Ok, so it's mostly my fault. I want them to be involved in activities, and they happily oblige. Volleyball camp ... sure. Church camp ... sure. Youth group trip ... sure. Band camp -- can't miss that. Trip to visit family in Louisiana -- gotta go see family, of course. Football skills camp -- that would help before the season starts. Another football camp -- can't hurt. Another volleyball camp -- should help for tryouts. You get the picture! Having three very involved kids, in a variety of different activities, sure is hard on us parents!

Danny and I did manage to squeeze in a short weekend trip alone to Fredericksburg, Texas, a small town a few hours from where we live. This was during the week that ALL 3 kids were at camp (and all the planets were in perfect alignment for that to happen!.) Had a really nice time. The remainder of our week alone at home was spent doing things that we normally have no time for: small house projects, washing the cars, eating out (more often than usual,) etc. It was nice! It was around this time that big changes were taking place ... stop reading if you feel like you don't want to hear some very personal and private information about me.

If you've read my blog, you may recall that because of the years of being on anti-hormone therapy as part of my cancer treatment, sexual intercourse had become extremely painful and we basically had to stop it altogether. We did "other" things, but it was upsetting to me that that part of our relationship had to end. Interestingly, in early summer, I began feeling a lot more "interested," you might say, and we found that the pain had definitely decreased! It was really exciting, and was something of what we had hoped for when Dr. Green took me off the hormonal therapies to start Xeloda last October. Eventually, I started feeling crampy, as if my period was about to start. Bear in mind, now, that I hadn't had a period for the past 5 years (since I first began treatment for stage IV cancer)! I definitely did not miss this monthly nuisance, but clearly it was a sign that my hormones were alive and functioning again. After the PMS came the cycle, and it was heavy heavy and long lasting ... BUT ... I can only deduce that with the hormones circulating again they were supplying areas that were lacking, and the pain during intercourse, over time, WENT AWAY! So that's my biggest news. I know, too much information for some! Let's just say that our relationship is "flourishing" again! I can't say how happy this makes me, to be able to have normal relations again with my husband. I am woman!

That said, at the same time I was concerned that this surge of hormones might actually put me at risk for further growth of my cancer. Oh, the joy, of being a stage IV cancer patient! I asked Dr. Green at my next appointment, and she said that she was not concerned about it since I was still on Xeloda, and that actually the Xeloda might work better if the cancer started to grow faster. A little confusing, and worrisome, but I understand the concept that chemotherapy works better on fast-growing cells than slow-growing. It's just not very comforting to the cancer patient! I have to have faith that I am at the best place in the world for cancer treatment, and that my doctor is the bomb and knows what's best for me. I have to trust. And I do.

By the way, my last scans and labwork were all "beautiful," showing improvement in many areas and no growth in others. Things are going along just wonderfully! Woohoo!! Yay for me! I am blessed to be alive and healthy!

Kim

Feeling much better

2011-05-16T21:57:00.002-05:00

Here I am again, exactly one month since my last pathetic post. Lordy, was I ever in a pit when I wrote that! Amazing what severe, ongoing pain and around-the-clock narcotic use will do to you! The tooth pain actually got worse after I wrote that last entry, requiring 2 Vicodins every 4 hours, night and day. And even that wasn't cutting it. It would take 30-45 minutes for it to kick in, and then it wouldn't last the entire 4 hours, so I was only getting brief periods of time with no pain. It was miserable. I wasn't myself, wasn't thinking straight, and wasn't any good at all to my family.

When it was clear that I wasn't going to see a dentist at MDA any time in the near future, Dr. Green gave me the OK to see a local endodontist, assuring me that a root canal shouldn't be a problem related to my long-term Zometa use. So I made the appointment and consulted with the endodontist. Liked him, liked him a lot. Until he said that he wanted me to be on antibiotics for a few days until he did the root canal. I'm thinking, "You've got to be kidding!" Here I am, absolutely miserable in pain and even having thrown up en route to his office, and he wants me to wait 4 more days to have the procedure. Not wanting to end up with an infection and make things worse, I, being the good patient, agreed to do it. It was during those 4 days that things got really bad (as described above.) By the time the time came for the root canal to be done, I was so ready. I was also desperately hopeful that the procedure would relieve my pain. There was no guarantee, after all. I couldn't imagine having to go on like that. The doc said, "I understand that you don't want the nitrous, but I'll make sure you're comfortable." I was like, "Um, NO, please give me the laughing gas, I know I definitely did NOT say that I didn't want it!" Well I was nice about it, but really, dude, I need some relief here. It wasn't fun, but it wasn't as bad as I expected. I highly recommend Dr. Dobyns!

After the numbness wore off, several hours later, I was astounded by the total absence of pain! It was as if someone flipped a switch from PAIN! to "No Pain." Truly a miracle (at least from my perspective.) I have not taken a single Vicodin since the morning of my root canal. Clearly it was just a really bad tooth and not brain mets!lol

If you're new to my blog, you may be wondering how all of this relates to my breast cancer journey. I suppose it doesn't. It's just a bump in my road of life ... although I do wonder if the dental issue is in any way related to the chemo I'm on now (Xeloda.) It causes a multitude of strange symptoms, affecting different body systems, so why couldn't it have played a part in my tooth problem? It has caused some gum bleeding. And I've read in some other advanced-breast-cancer blogs/forums that others have had some "dental issues," one woman even having to stop taking Xeloda because of them. So who knows!

At times when talking to Dr. Green, I get the feeling like what I'm complaining about has never been complained about before, that this is the first she's heard of this symptom or that side effect. Ok I don't just get that feeling -- that's what she tells me! But in my research, I see that others are having similar problems or issues. I read a lot of the forums and many are going through what I am. Perhaps they don't share all the issues with their doctors. (No one wants to seem like a chronic complainer or a wimp or a "bad" patient.) Or the doctors don't report each and every symptom that their patients do complain about, so there is much that doesn't get put in the med's literature. I believe that some doctors do dismiss some patient complaints, writing them off as being caused by something else or unrelated to the cancer meds -- or just because they think that the patient is a "problem" patient. I don't believe Dr. Green thinks of me like that, but she has commented that I seem to have some unusual side effects. One was headaches from Avastin, which she later confirmed was indeed on the list of common side effects and that she was, at the time of my complaints, unaware of. No one, no place is perfect, at all times ... even MD Anderson.

So where am I now? In a much better place both mentally and physically than a month ago! My dance class just ended for the summer, and the kids' school days are winding down. I am working on our family's busy summer plans of sports camps, Lutheran camp, visits with relatives, youth group trips, etc. Hoping to get some projects done, such as organizing years of photos into albums (those before the digital camera age,) and finish some un-finished decorating projects around the house. Still a little low on energy, but working with it and Xeloda's other side effects (hand and foot discomfort) as best I can. Dealing with some stressful family issues to the best of my ability. Praying for our family and some of its members who desperately need God's hand and guidance. Trying to be a better wife, mom, daughter, sister, and grandmother.

Goodnight!

Snowballs, toothaches, and a brief sense of wellness

2011-04-16T19:43:00.005-05:00

Had my slew of scans done during the first week back from vacation. Great results! Many places where there had been cancer before, no longer showed any signs cancer, such as the liver. The tumors had all either shrunk to a smaller size, stayed the same, or no longer could be seen. Truly amazing! Because MD Anderson abruptly decided to change their breast cancer tumor marker screening tool from the CA 27-29 to the CA 15-3, it was impossible to compare my new numbers to the old. But, on this my first CA 15-3, my level of 16.9 was well within the normal range of 0-25. Yay! When I saw Dr. Green, she was oh-so-happy with all of my test results ... And, I was, at that time, feeling really really good -- had been off of Xeloda for nearly 4 weeks and was still on my vacation high. Here's my own retrospective analysis of the last couple of months ... In the weeks leading up to our super vacation, I got off of Xeloda, and I started really feeling good. Was feeling like, yes, I can do things. I'd been so unhappy with my body -- the serious decline in fitness and good looks since I had to give up running some time ago had me down. Danny and I started taking some neighborhood walks. Brisk walks for a cardio workout, not just strolls. I again contemplated getting a treadmill or an elliptical to try and bring back my half-marathon body. Planned on a home workout with weights at least once a week. Did some sit-ups. I felt motivated. I realize now that it was what I'm calling a "false sense of wellness." Only it's a lot more complicated and twisted than that. It got me thinking ... Most of the time, when you take medication to treat an ailment, you feel better than you did when you were "sick." Not so with this cancer of mine. Even though I'm stage IV, I hadn't been feeling too very ill. I could tell something was going on, but for the most part, I was able to live life. But now I'm at a point where the cancer treatment makes me feel worse than the cancer symptoms! I try really hard to keep a straight head in all of this. I know that were it not for modern medicine, I wouldn't be here today. That is clear. But being off of Xeloda for 3 1/2 weeks felt SO good, that, in retrospect, it highlighted how lousy I felt while on it. I hadn't fully realized how much less energy I had while on it, until I got off for a period of time long enough for it to mostly get out of my system. I don't even know what my normal is anymore! Back on Xeloda after the Hawaii trip, I am back to not feeling like doing much. A general laziness and lack of energy. Wanting to go to bed at 10:00 instead of not being able to fall asleep until 11 or 12. Definitely not interested in fitness walking or buying an elliptical! Basically doing the bare minimum to keep the house and business going. Barely managing the kids and their schedules. Leaving a lot of housework to Danny. Being a sorry excuse for a wife and mother. And to top it off, I have a new problem! Since returning from Hawaii, I've had a toothache that is on and off. Started out fairly mild, but has progressed to AWFUL. And what I keep thinking is "Why???!!!" I am officially all-out on the Why Me? bandwagon, something I've managed to stay away from all this time. Its a depressing development, and I'm not doing well. As if I don't have enough to deal with! My lower jaw on the right side aches, and sometimes it is extremely painful. The pain radiates to my ear and temple, and down my neck. At times the entire right side of my head feels tender. And so I wonder, does it have anything to do with the cancer? Does it have anything to do with the cancer treatments? Or is it just a completely unrelated yet sucky condition? Do I have brain mets? Have my years on Zometa affected my jaw in some way? Have I developed osteonecrosis of the jaw, a potential side effect of long-term Zometa therapy? Knowing that Xeloda can cause gingivitis (and my gums have been mildly bleeding periodically since being on it,) has that then caused my teeth to move, hence affecting my bite and jaw? Trying to figure it all out! Last weekend, the pain was so severe that it woke me up in the middle of the night, 2 nights in a row. And so I got up and took Vicodin -- 2 of them. I had been taking two Tylenol ES tablets, which hadn't been fully relieving the pain, sometimes not touching it at all. Clearly it was time to bring in the big guns. Taking 2 Vicodin knocks me on my butt! Makes me tired and sometimes sick feeling. Had to miss church to stay in bed. I decided that I could deal with it myself no longer, and I called Dr. Green first thing Monday morning. Only when you call, you can't actually speak to a person, unless you consider your issue a "medical emergency," in which case you get connected to a triage nurse. Well I don't consider tooth/jaw pain a medical emergency. Maybe some people do, but I don't. And so I left a voicemail, and just for good measure, I also sent a "secure message" through the myMDA online messaging system (like a private email.) I received a call and message back from Dr. Green's nurse, and explained my problems. I was told that they would put in for a consult with the dental department, but in the meantime I may want to see a local dentist for faster service. She asked if I needed pain medication, and I said I had a good supply of Vicodin at home. It was a plan, and I was going with it. I saw a local dentist. X-rays were done, he tapped on and blew cold stuff on the suspicious tooth to induce the severe pain I'd been having, and told me that I "may" need a root canal. But it wasn't clear. He wasn't sure, so he referred me to an endodontist for evaluation and possible root canal. He also prescribed an antibiotic. I decided to not schedule an appointment with the endodontist. Instead I will wait for the consult with the MDA dentist. I was told long ago that because of my long-term use of Zometa (for bone mets,) that should I need any dental work, I should have it at MDA. In the meantime, the pain has been at times excruciating, at times tolerable, and at other times non-existent. All week I've had good and bad days and nights. I try to stick with Tylenol during the day, but when it's really bad I take Vicodin. I've moved to 2 Vicodin every night at bedtime, because I don't want to wake up in the middle of the night in severe pain again. It's way too much Vicodin for my taste ... makes me feel yucky. I've been spending way too much time laying on the sofa and watching HGTV, while my family does things without me and my husband has to do all of everything. It is no kind of life, and definitely not my kind of life. My house is a mess. My kids are eating canned meals and frozen fast food for dinner every night. Danny is having the do the work of both of us, at home and some days at work. I have guilt and feel like crap. Depression and bad thoughts creeping in! And also ... adding semi-regular narcotic use to my intake over the past week and a half has added insult to injury regarding my bowel problems. I had been managing the Xeloda-induced constipation with once- or twice-daily Dulcolax stool softener. Not cutting it now. Am suffering with painful poopouts and have replaced the Dulcolax with Senokot-S nightly. The problems just seem to snowball. And speaking of snowballs ... I am a huge snowball fan. Chocolate with condensed milk is my favorite; has been since I was a kid. I know now that I've moved away from my home town of River Ridge, Louisiana (New Orleans area) that no else calls them snowballs. Most folks call them snowCONES. But here's the difference: a snow CONE is what you get at a school/church carnival in a cheap flimsy cone-shaped paper cup. The ice is hard and the juice only comes in blue or red and immediately falls to the bottom of the cup. There is usually no utensil given with a snowcone, so it's not easy to eat and it's never very good. If there is a utensil, it's usually a stroon, a sad and pathetic combination of a straw and a spoon that functions poorly as both. You don't get much from sucking it like a straw, and the spoon is too little and is usually sharp and uncomfortable on the lips. A SnowBALL, on the other hand, comes in a sturdy styrofoam cup. The ice is soft, fluffy and "shaved," with a special machine, the Snow-Wizard (a New Orleans-made tradition.) The "juice" comes in oodles of flavors that are thick and rich and they soak into the ice to flavor it instead of dripping to the cup bottom. A straw and plastic spoon (separate) are always included. Christa said today that a SnoBALL is a more sophisticated than a SnoCONE -- so right! Anyway, we got snoballs today after David's baseball game, and shortly after finishing mine, the tooth/jaw pain was really bad! And so goes another of the little joys in my life. Uggh.

Vacation boosts the soul!

2011-04-05T11:59:00.004-05:00

Hello all! Had a great vacation in Hawaii with my family (husband, kids and mom)! Visited Pearl Harbor, Volcanoes National Park, a black sand beach, the towns of Hilo & Volcano ... kayaked on the Pacific to an offshore island, relaxed in a beachside cottage, hiked (lots) and took in all the sights that Hawaii has to offer. At least as much as we could possibly squeeze in in 8 days! Even though we were active, we still had lots of down time to just relax and soak it all in. Doesn't sound like activities someone with stage IV breast cancer can do? Wrong! I'll admit the hiking wasn't as easy as it used to be. I'm not in the shape I once was, but I pushed myself (as always) to do all that I wanted to ... so I can say I did! The only thing we didn't do that was on my list of Hawaii "must-do's" was snorkel. The plan was to snorkel in Kailua Bay after our kayak excursion. BUT, my kayak adventure got a little marred from the get-go: before we left the kayak rental facility, I got sunscreen in my eyes! What bad luck! Ugggghhhhh! It was horrible! Leave it to me to ruin a perfectly good event that I'd been looking forward to for months. My eyes ran (poured, really) and burned like fire the entire time. Disappointing, to say the least ... I wasn't able to fully and clearly visualize everything, what with the squinting and eye-running and for a large portion of time, closing my eyes. But I still count it as an awesome and beautiful experience! Anyways, after the kayak trip my eyes were still pretty bad off so we decided to forgo the snorkeling. Which turned out to be for the best anyway, because we had planned a lovely dinner that night at a special restaurant for my daughter Christa's 14th birthday. By the time we ate lunch and went back to the house and all of us cleaned up and showered, it was time to head to Honolulu to eat at the Top of Waikiki, a rotating restaurant on the 16th floor of a downtown building. A little pricey, but definitely worth it for a special occasion during a once-in-a-lifetime trip. Then we perused a little marketplace for some unique souvenirs with a Hawaiian flair. A fun time ... for us girls anyway. Danny wasn't too happy ... his wallet was MUCH lighter at the end of that night! We took LOTS of pictures, because I love taking pictures and I don't want anything to happen that isn't documented in photos. Of over 700 pics, we got several really good ones, but even the good ones don't do Hawaii justice. Especially at the beaches. You can't GET the whole experience of the sights, sounds of the crashing waves, feel of the constant breeze, and look of the swaying palm trees, in a photograph. For those you have only your memories! That's it for now. It's too bad that the vacation high doesn't last long once you're back to your regular day-to-day life! Thanks for reading, more later. (hopefully not a whole month later!)

Rolling along

2011-03-01T07:52:00.003-06:00

Yep, I've officially failed at my new year "to do" of blogging more often, after only 2 months! I really don't know where the time goes, all I know is that I'm ALWAYS busy and there's not much time to blog. Danny and I have taken a couple of brief, whirlwind, but very productive, business trips since the first of the year, our whole family has been sick on and off (taking turns with various ailments,) and this past weekend I was off with my daughter Bethany at a middle-school-youth church retreat of sorts. We continue to be potentially over-scheduled with the kid's activities, and that keeps our daily tasks to a brisk level and keeps our stress levels fairly high also! The shop has been busy (can't complain,) with new products arriving almost daily, so that gives me plenty to do in the office. Of course the new products arriving daily is my own (and Danny's) doing, but ya gotta do what ya gotta do to keep things moving and fresh. Although I am passionate about The Pink Ribbon Shop and its mission to promote breast cancer awareness -- one pink ribbon at a time -- it's definitely a full time job for both of us, and with the multitude of other similar online shops, there is lots to do with trying to set our shop apart from the rest. Not complaining -- just sayin'.

In my last post, I was in the middle of my "on" week for Xeloda, and I was having a really hard time dealing with the side effects. I took it upon myself (well, Dr. Green did say to stop taking it if it got too bad) to get off of it before the week was up because the pain and tenderness in my hands was excruciating, and my feet were very tender as well. So, per Dr. Greens instructions about the next cycle, I took about 12 days off from Xeloda and let me tell you, it was VERY, VERY NICE! My hands and feet healed up nicely -- not completely but to a "hardly noticeable" level of discomfort. I was even able to taste a little saltiness for short time! Yay! And then it was back "on" for 7 days and "off" for 7 days. After being off for 12 days, it seems to have taken a couple of 7&7 cycles for the side effects to really build back up ... which is where I am right now. BUT, since Dr. Green had told me earlier that I could take a couple weeks off of Xeloda so I can enjoy my vacation-of-a-lifetime that's coming up, I am now at the lovely place where I took my last dose just a few days ago and will be off of it for 3 whole weeks!

I'm excited that I'll get to enjoy my vacation to the absolute fulliest! (That is not a typo ... there are times that fulliest is just a more appropriate word than fullest, but that's just me -- plus it's fun to say. I adopted fulliest into my vocabulary after seeing it on a kids worship CD we used to play in our van.) Anyway, back to the good stuff. We love to hike and do what I'll call "active sightseeing." We want to see way more than what can be seen by looking out of the car windows. We want to learn about the history of wherever we may be visiting (like it or not, the kids are forced to like these things, too!) We want to do things that can't be done in our flat 2nd hometown in southeast Texas! And with that comes more self-induced stress on my part, trying to squeeze as much action into my "vacation" as possible! I actually got overwhelmed reading books about our destination, because I'm thinking, "I don't know how we're going to do it all!" Yes I'm a little crazy. Surely I'll need a vacation, or at least some rest, after my vacation, but my philosophy is that you only live once -- I want to do it ALL!

Poor Danny!
Goodbye for now.

Good news and changes

2011-01-13T18:27:00.004-06:00

Yesterday I went to MD Anderson for my Avastin infusion and to visit with Dr. Green. It was a chaotic morning at home. We had a low tire on the van, our tire gauge quit working, the oil was low and we didn't have any quarts in the garage, and Christa discovered as we were walking otu the door that wasn't able to print her science assignment that was due that day nor did she save it . All of this before we left home this morning. It wasn't a good start to a long day!

But it got better. Even after leaving a little late, dropping off the kids at school, stopping at Wal-Mart for oil, adding oil to the van in the WM parking lot (I guess we have some redneck in us!) and driving through for our usual Burger King breakfast; traffic wasn't too bad and we ended up being just a few minutes late for my 9am labs. We didn't wait long and were in and out pretty quickly. We moved on to the "green suite" on the 8th floor and checked in early for my 11am Avastin infusion appointment. We settled in to a comfy sofa and watched a "She's Out of My League" on our portable dvd player -- funny movie! Really took our minds off of why we were there. They called me in early for my infusion, and my nurse got the IV in on the first attempt -- Yay! We finished watching our movie while I was being "infused" and we were all done in time for my 12:40 appointment with Dr. Green. We headed to the breast center and waited just a short time to be seen by Kristen, Dr. Green's nurse. My "interviews" with Kristen are taking a lot longer than they used to ... she asks and I tell all about the side effects I've been experiencing, so that takes a while. Prior to just a few months ago, my answers were "no" to all questions, since I was doing well and feeling good for so long. Maybe one day I'll get back to that and we can breeze through the side effect questionnaire!

Anyhoo ... my blood counts were just slightly low, nothing to be concerned about. Dr. Green came in, accompanied by a pharmacist and a student pharmacist, to discuss Avastin side effects and possible treatment options. It was quite a crowd for the small examing room! Dr. Green said that the Inderal (blood pressure med that she had prescribed to prevent the Avastin headaches) dose was too low, and she recommended that we up it to a stronger and long-acting dose, every day and not just the 5 days surrounding my Avastin infusion. I was okay with that. Anything to prevent the headaches! Then she said that another option would be to get OFF the Avastin. For one, the FDA had decided to remove Avastin's approval to treat breast cancer. Although the change was not official, it was more than likely to be official within the next few months. Two, my tumors had "melted away" (as Dr. Green likes to say) after being on only Xeloda for three weeks, before I even started on Avastin. Given the potentially serious side effects associated with Avastin use, the multitude of actual side effects I was having from it, and also taking into consideration the studies that showed it not to prolong life for more than about 3 months, Dr. Green told me that she did not feel it would be detrimental for me to get off of it entirely. Danny and I were more than fine with that, as we were both uncomfortable with me continuing on with it. It was a relief to hear Dr. Green suggest that I get off of it, because neither Danny nor I was willing to request it. We both have complete trust in her and in MD Anderson overall, and we weren't about to try to manage my treatment regimen ourselves!

So we left MDA relieved that yesterday's Avastin infusion was my last, but also kind of bummed that I had to get that one last dose. If I had seen Dr. Green before my infusion, I might not have received it. Although I may still have headaches, etc. in the next few weeks, it does feel good to know that that will be the end, once yesterday's dose gets out of my system.

Meanwhile, my hands and feet seem to be feeling worse than ever (Xeloda side effects.) Although they felt much improved during the latest week "off," as soon as I got back on, which was just 3 days ago, it seemed like the intensity of discomfort immediately went up. It's debatable if it was the week off that caused the improvement or if it was my decreased activity that helped it. It was during my week last week off that I had two severe headaches which put me in bed for an entire day -- off my feet, and not doing anything with my hands (well, except for iphone use and email checking -- can't do without that!) Danny and I are both analyzers by nature. In case you haven't noticed ... we try to figure out what could be causing what, when the side effects happen in relation to treatment days, activity, etc. But it can't always be figured out, quantitated, organized into a predictable schedule, or filed in a nice neat folder! Such is life, I guess. But I digress ... last night I woke up several times feeling intense pain and burning in my hands. Never had that before! They are hurting even while at rest and not being used. As instructed, will have to skip today's Xeloda dose and report the change to Dr. Green. After examining my poor unhappy hands at yesterday's appointment, she had told me to take 10-12 days "off" after this current 7-day "on" cycle, to give them some extra time to heal. But at this level of discomfort, I fear I won't even be able to complete the remainder of my 7 days on.

This morning, I am home, "taking it easy" doing laundry & dishes, and getting ready to go babysit my g-kids for a short while while my daughter goes to a doctor's appointment.

It's tiring to even write about all of my cancer woes, but I blog to document my cancer journey. Why, I'm not totally sure. Maybe so my kids will someday know what I went through. They don't read it now, but they may want to when they are older. Have made it one of my new year "to-do's" to blog more often and include more than just my cancer. I am way more than my cancer, but sometimes it does seem to overshadow everything else and take over my thoughts. I stay busy with day-to-day stuff, running the kids to their various activities, failing to adequately take care of the house, managing the bill-paying and finances of both home and business, and all that comes with owning my own business and having a husband and 3 kids at home. Whew!

Ups & Downs

2011-01-12T15:37:00.014-06:00

I am sorry that my last post was a little too much for a fellow cancer fighter. I certainly understand how it could upset someone getting ready to enter treatment. As I said, sometimes I just need to vent. Things aren't always going well.

Last week was my "off week" from Xeloda. This time, the redness, discoloration, and pain in my hands & feet actually lessened somewhat. This was a welcome respite! I feel like perhaps I can stay on this current dosage schedule. Dr. Green had said that if it got to be too much, she would lower my dose a little. I am not going to ask for that, since I feel like I can tolerate this level of side effects. One week on, one week off, and if the off week it gets better, then I'm ok.

On the down side, my headaches (that we think are caused by the Avastin) have become more frequent. I've had 3 in the past week and a half -- this is really cramping my style! It's not like me to stay in bed or on the sofa all day, but that's what I have to do. The experiment of trying Inderal (a blood pressure medicine) was only partially-effective. Dr. Green had prescribed it with directions to take one pill on the day before my Avastin infusion, then one each day afterward for a total of 5 doses. I still got a headache, but it wasn't severe enough to put me in bed. The most recent headache, a few days ago, started to rev up in the evening -- an evening when that day I had not done much but sit on the sofa and watch football with the family (a rare day indeed!) I tried taking 2 extra-strengh Tylenols to try and stave off the headache. I went to bed with the headache. I woke up with the headache, which was even more severe than the previous night, and so I knew it wasn't going to be good. My old, old stash of prescription pain meds was finally dwindling to just a few pills. I took a single Percocet which in the past has worked well. No such luck. Four to five hours later, I took another Percocet. Still nothing. I hesitated on taking it in the first place, because I've been instructed by my doctor to avoid aspirin and NSAIDs. Percocet contains aspirin, but I figured one or two wouldn't kill me. I was desperate, after all. The only drug left in my stash (leftovers from various surgeries from 4+ years ago -- biopsies, mastectomy, reconstruction, c-sections) besides the few Percocets was Vicodin from xx years ago. It was so old, I'm not even going to say how old it was! I feel the need to say here that none of the prescriptions in my stash had been refilled -- they were all the originals prescribed by my surgeons immediately post-op. I am certainly no pill-popper! Anyway, I did resort to taking the old Vicodin, which also did not work. I know, I know, I should definitely not have taken any prescriptions drugs that old. As I said, I was desperate and didn't want to visit the hospital. I thought well maybe I should try a Phenergan suppository after a couple of hours of the Vicodin not working, and although it knocked me out -- well actually all of these things knocked me out for a time and I was sofa- or bed-bound the entire day -- it never took the headache completely away, but did diminish it. Amazingly, after a day of mostly sleeping, I was still able to sleep through the night. The next morning I felt a little better, and by the end of the following day, the headache finally completely abated. It is definitely time to discuss the headache issue again with Dr. Green.

Additionally, the FDA just recently made a decision regarding the use of Avastin for breast cancer patients: the FDA removed Avastin from the list of approved drugs to treat breast cancer. They actually had originally fast-tracked it for approval a couple of years ago, but now they've changed their mind and are fast-tracking its disapproval. Or something like that. The reason was that studies have shown the side effects of the drug outweigh its benefits, and that the cost was too high in relation to the drug's effects. I read the decision, and re-read the studies, and I have to say, it scares me. Avastin scares me. When I called Dr. Green to ask what direction my treatment will take now that the FDA has un-approved Avastin, I was told that patients who are on it and responding well to it may continue to take it. Ugh. OK. If you say so.

Although I am a relatively healthy woman (ha ha), says my oncologist, I still worry about what may happen inside, where I can't see/monitor. I know that the Avastin is responsible for my mild nosebleeding, gum bleeding and rectal bleeding ... sooooo what's going on inside? I've read that long plane trips can cause dvt's (blood clots in legs) so if my vascular system is being compromised, what, if anything, will happen when I fly to Hawaii in March? Will the family vacation (of a lifetime!) be ruined by something to do with my health? I sure hope not! I know, I worry too much.

So tomorrow, I am scheduled to have my next Avastin infusion, then I will see Dr. Green. When she prescribed me a fresh bottle of pain med (a LIFETIME supply, I might add!) she also asked that I make an appointment so we can discuss the headache/Avastin issue, which I am more than willing to discuss. Looking forward to dropping the kids off at school, driving through Burger King for my usual Cini-Mini's and a large decaf, with extra creams! Don't worry, my health monitor friends, I only have this breakfast when we go to MD Anderson, which is every 3 weeks as of now! I usually have 2-3 donuts ... just kidding! But seriously, having this breakfast seems to help the nurses get my IV started on the first try. No kidding, when I skipped BK, it took 5 attempts. So, BK it is, every MDA infusion day! Also looking forward to a peaceful day with just me and Danny. Strange that I consider a day with at least 2 needlesticks and an infusion of poison into my veins as a peaceful day.

Attaching some photos of my hands and feet, at their very worst so far, to try out the photo option here on the blog. I should probably replace that old pic of me, too, but that will have to wait until another day. Danny thinks I need to add one of me @ Christmas time, so people can see that aside from my hands and feet, I really do look like a normal human, so OK. Anyway the hands and feet pics are not today, but some time last week when I thought, I gotta get a shot of this. I think they're some pretty weird side effects. Makes you wanna say "Ewwwww!"

Thanks for reading ... until next time.

Cancer talk

2011-01-06T20:04:00.006-06:00

Hello all, and Happy New Year! Thanks for reading my rambling blog posts. I am doing fairly well, and I continue on the same two chemotherapy agents. Right now I have something on my mind that's been bugging me. About myself, and also others.

In the past, I've been guilty of hearing someone's cancer complaints, and afterward thinking, and even discussing with others, how that person just doesn't know how good she has it. She's not even getting the "big time" chemo, and she's complaining of this, that and the other side effects. When I was on chemo (10 yrs ago) I lost my hair, did a lot of throwing up, and had to be in bed for a few days ... and here's this person not having any of that and they're complaining.

I admit now that I was very wrong to judge that person in that way (the issue I am referring to took place a couple of years ago.) One really has no idea how badly someone else can be feeling, based on how they look and act, or how you think they should be feeling knowing the treatments they're receiving. Just because someone is going through a different kind of treatment than I did, doesn't give me the right to judge or make comparisons to the side effects I experienced. It's all relative!

I have learned this lesson, because right now I'm on the other side. I'm not receiving the kind of chemo that makes me lose my hair or constantly be nauseated and fatigued, but I AM on chemo, and the two drugs I take DO have their side effects, and there are a lot of them. Many of them have caused me to have to change my lifestyle and daily living activities. This latest round of cancer treatments is taking away, one by one, little parts of my life. Each by itself may not sound so bad. But in combination, it definitely is affecting me.

Such as .... My independence has been affected, as I have trouble using my hands for cooking, cleaning, brushing my teeth, zipping my pants, putting on shoes, tying shoes, etc. If I was still a nurse, I definitely could no longer work. As it is, I can still do some of my work at the Shop (the desk work,) but I certainly can no longer fill orders. It's too painful on my hands. I can no longer run for fitness, earlier because of the bone mets and femur fracture I sustained a while back, but more recently it's because of my feet. They are red and painful and tender, and being on them for long periods of time exacerbates the symptoms. I have intermittent, mild bleeding from my nose, gums and rectum. I am struggling to find a balance between extreme constipation and diarrhea, and am dealing with the discomfort that accompanies each of these maladies. I've had to severely modify my diet due to burning of the lips, mouth, and esophagus. My taste is altered so that I can't taste salt. Everything tastes like it needs salt! Two to four times a month, I get a severe headache with debilitating nausea as a side effect of one of the very strong chemo drugs I'm taking, making me lose a whole day of life each time. My healthy sex life ended over a year ago because of the pain it caused, all due to the anti-hormone drugs I was on for so long. And even though I am now off of anti-hormones (which we hoped would send some life into my insides and make sex less painful,) it is still excruciatingly unbearable, which is just plain sad for a woman of my age with a hot and healthy husband who loves me and wants to be with me... but I guess things could always be worse.

A lot of people ask how I'm doing, and sometimes they really do care and really do want to know, but mostly I just say "Great!" Because overall, I AM doing great. My scans have shown great improvement and this latest treatment regimen is definitely working on the cancer. This is wonderful news, and I am truly thankful for it. I have people say "Well you LOOK great!" And I do, excluding my hands, feet, and purplish-colored lips, that is. I really am thankful that I look great, and that I don't LOOK like a cancer patient... things could always be worse.

There are other people who try to tell me what I should be eating and not eating, what I should be drinking, the supplements I should be taking ... this is supposed to be good for the immune system, that will help keep your energy levels up. "Make sure you eat some salad," I've been told on my way out to eat with my husband. Yea, and perhaps they should be giving me some green tea in my IV infusion instead of the chemo drugs! I think I can have a doggone hamburger if I want one! I've been told that I should be exercising ... one person even saying "Even if it's just 30 minutes, three times a week." EXCUSE ME?! That sounds like the workout schedule of a perfectly healthy woman who is NOT on chemotherapy for stage IV breast cancer! I agree that some exercise is definitely a good thing, for everyone, but I simply haven't had the energy. Plus YOU try to find some good handless, footless ways to exercise! What I interpret these comments as, is that I'm not doing enough to fight my cancer. Or perhaps my diet and exercise habits have somehow caused my cancer. If only I would do all these things, my cancer would go away! Never mind the fact that, as instructed by my oncologist, who works at the best cancer treatment center in the world, I have to poison myself with an oral chemotherapy agent morning and evening, 7 days on, 7 days off for, not just a specified time period -- indefinitely! Every three weeks I go get an infusion of a different poison. Also indefinitely, I might add! Unfortunately with stage IV cancer, there is no light at the end of my tunnel. There is no magical date on the calendar when I will receive my last chemo treatment. When my doctor decides to change my treatment, it will be because the current ones have stopped working and it's time to move on to the next options.

Then I've had the occasional person try to give me "perspective" as a method of dealing with my cancer and side effects. They tell me about so-and-so who has this other (worse) kind of cancer, a husband of a friend of theirs is getting radiation to the brain, and such-and-such relative is having hallucinations from their non-cancer-related disease treatment. I understand that perspective has its place in how one deals with any kind of personal trial. One can almost always find another who is less well off than oneself ... more sick, with a more deadly cancer, that has spread everywhere. It is helpful to look for the positives in your own situation and to know that things could always be worse. I myself use this to cope with my own illness. But the timing and delivery of giving this kind of advice to someone in this kind of situation is something that should be considered. Sometimes, we cancer patients just want to be listened to. If you honestly want to know how your cancer-patient friend is doing, ask and then LISTEN to their response. It's not always appropriate to interject advice about perspective. As I said before, it's all relative, and each individual handles things differently. It always IS appropriate to say "Oh, I'm so sorry you're having to go through all of that" or "Wow, that must be tough." Sometimes while you're trying to give advice, the recipient of your good intentions may be interpreting it as you minimizing what they're going through. That it's not that bad. Not as bad as .... whomever you know or whatever you've gone through. Now that I'm on the receiving end of this kind of advice, I truly have "perspective" on what kind of things to say and not to say.

Let me end by saying that I know that most folks mean well and are not intending to offend. I do try to keep that in mind. But sometimes it gets to me. I am only human and I'm not always able to let things roll off my back. Sometimes I just need to vent, which is definitely what I've accomplished here.

Kim

Update and great news from Kim

2010-12-08T16:49:00.003-06:00

I am always amazed at how much time flies by between my blog posts!

I have now had 3 doses of Avastin. The infusions have been every 3 weeks. Around day 3-4 I get a severe migraine headache accompanied by nausea and vomiting. Once it hits me, I am unable to keep any by-mouth anti-nausea or pain meds down, so my poor husband has to give me a Phenergan suppository, so I can then take something for the pain. My "stash" of pain pills (Vicodin) is what's left of my post-op prescriptions from over 4 years ago! I am prone to migraines, but usually only have 1-2 per year. With the Avastin, they have been predictable a few days after the infusion, and sometimes another time or two in between infusions. This has not been good. In bed for 1-2 days in pain or sick. Still, I am alive, and what's one day every few weeks, right?

I continue on Xeloda tablets, 4 in am, 4 in pm, one week on, one week off. My hands are not better, and perhaps a little worse. The tenderness is unbelievable. I am able to type and do anything requiring only light touch -- which is great, because if I couldn't type, I couldn't work at all. But anything that puts pressure on my fingers and palms, hurts. Things such as: opening milk, jars, containers, etc. in the kitchen; opening or packaging boxes at work; grocery shopping (yes, believe it or not, placing things in the cart and then taking them out, and then loading up the van with the bags, hurts and leaves my hands even more tender!); carrying a heavy tote bag using my hands on the handles; pulling up and zipping/buttoning my pants; putting on and tying my shoes; blow-drying my hair; and well, you get the sad, sad point here. You just don't realize how much you use your hands! My hands are also sensitive to very hot or very cold water, so when washing my hands or bathing, I need to take care that the water temperature is just right. Another odd side effect I'm having, related to the hands, is that my cuticles are rising up onto the nail, and they are tough and firm and can't be pushed back! Not attractive, at all! I am not really one to do my nails regularly, so it's not that big a deal to me, but it's really ugly. And lastly, my tops of my hands seem to have more "spots" than usual. Freckles, nevi, whatever they are, they weren't there before. Weird stuff. And also not attractive!

Also, my feet have now joined in with the side effects! The bottoms of my feet are red and are intermittently painful/tender. I am only wearing tennis shoes now to try and be as comfortable as I can, which has helped. A crazy thing that has happened with my feet are that my toes are all messed up. Danny has always suffered with ingrown toenails and pain/tenderness/swelling/drainage at the corners of his nails. I have never, ever had trouble with my toes. Well now we're in the same boat. All of my toes -- every one of them -- are red, swollen, and tender at the sides of the toenails. I treat them kindly by just wearing tennis shoes, and I think that's about all I can do for them.

Thankfully, I have had no more mouth sores. Not sure if it's because of the lowered Xeloda dose or the dietary changes I've made. Probably a combination of the two. My lips remain sensitive to heat. Still using Kids Crest and keeping my spicy food intake down (which is really a sacrifice for me!) I do still get some burning on my lips, inside my mouth, and down my esophagus when I eat even mildly spicy foods, but it's something I'm willing to tolerate once in a while to get some flavor in!

OK, I realize that I've done nothing but complain, complain, complain! Now for the great news. I saw Dr. Green a couple of days ago. She was just giddy with excitement when she gave me the wonderful news that all of my test reports were glowing! On ultrasound, they could NO LONGER FIND the nodules on my back! The chest CT scan showed that the left pleural effusion has "nearly completely resolved," the left lung's upper lobe's metastatic lesions and the chest lymph nodes show "marked improvement," and the mass in the lower lobe of my left lung has "resolved!" The CT of the abdomen showed that enlarged lymph nodes in my retroperitoneal area have "resolved," and it showed "no metastatic lesions in the liver!" My tumor marker (CA 27-29) is 28, down from 41, and now within the "normal" range. This is the most awesome news I've received about my cancer in a LONG time! Even Dr. Green was surprised at the extent of improvement in such a short time period! It's nothing short of a miracle. Evidently, God isn't finished with me yet! Makes all of my side effects very much "worth it" to know that the treatments are doing such a number on my cancer.

The plan is now for me to remain on Xeloda and Avastin for as long as they are working. Hoping and praying that that's a very long time!

I also voiced my concerns to Dr. Green about remaining on Zometa indefinitely, since I know that it stays in the bones forever and can actually cause bone brittleness with long term use. Although I am now getting it every 3 months instead of monthly which I was on for 3 1/2 years, it still concerns me. Mostly because of my age and activity level. Well let's just say my desired activity level! lol. Since there are no studies on Zometa beyond 2 years of use, I, and many other breast cancer patients still living with bone metastases, are living, walking guinea pigs. The last thing I want or need is to start having pathological fractures as a result of my cancer treatment, and not the cancer itself. So Dr. Green is taking me off of Zometa altogether for now, and we'll see how it goes. She said she was perfectly fine with that, and she did not expect any sudden flare up of bone mets issues.

Interestingly, on the way home from this terrific MD Anderson visit, we heard that Elizabeth Edwards had succumbed to breast cancer. She was diagnosed with a stage IV recurrence around the same time as I was, about 4-5 years ago, so it really hit home. Talk about being brought back down to reality! I know everyone's cancer is different, but I also know how fortunate I am to be doing so well.

I guess that's about it for now. I promise to "try" to blog more often, and also to post more about my life outside of cancer. There is more to me than that, but while trying to document my cancer battle, it appears here that it's all-consuming. Well it's not, at least most of the time!

Kim's progress

2010-10-29T09:30:00.006-05:00

I need to post more often, because I can't keep everything that's happening in my head for too long!

As mentioned in my last post, I was started on an oral chemotherapy agent called Xeloda a few weeks ago. Two weeks on, two weeks off. Even though Dr. Green seemed very thorough about what to expect as far as side effects, I forgot to ask her when these side effects would appear. So the first week, I felt fine, having only the occasional softer stool. Which turns out to be fine, since I normally tend toward the other end of the spectrum (tmi, I know!) I ate some really hot baked potato soup and burned my tongue, or so I thought. But that feeling of having burned my tongue wouldn't go away. It was like a mild numbness of the end portion of my tongue. My lips feel a little chapped, and they have a strange light-purplish tint to them. Regardless, I'm thinking, I. am. awesome. I can SO handle this. Maximum dose, no problem for me. The energizer bunny in me can keep a-going and going!

And, after only ONE week on Xeloda, I can swear that the palpable tumors on my left flank are smaller. It's amazing and hard to believe, but they really feel smaller already! I have Danny check, and he says "maybe." But I can tell, since I'm the one checking them way too often! I am naturally encouraged by this. It is awesome, and to me, miraculous! How can a drug kill cancer cells, and yet I am still living life as usual?

Second week, still doing pretty good! I can feel some mild discomfort in my hands, mostly in my thumb and fingers. Not so much the palms, which is where I had read it would be. Totally tolerable, though, and the skin on my hands & fingers is intact, but just a little dry. My feet are fine, no problems there. Near the end of the 2nd week, I am noticing some increasing sensitivity in my mouth and lips. I have to switch to Kids Crest, because my regular minty grown-up toothpaste feels too harsh. I notice that carbonated beverages are starting to irritate my tongue and lips. Dr. Green had instructed me to call and stop the Xeloda if I have more than 4 BM's over my usual daily number. I happen to reach that lovely milestone on my last day, but it's time to stop the Xeloda anyway, so I am not concerned.

I have now reached my "off" week, after taking Xeloda (4 tablets, twice daily) for 2 weeks. The night after my last dose, I go to a football game with my kids and have my usual game snack of nachos & cheese. I am shocked at how much burning this causes in my mouth, and even in my throat as the food & drink goes down! Understand that I pretty much live for spicy foods! Usually things can't BE too spicy for me. The Diet Coke I got with the nachos is now seriously burning my lips, tongue and throat. Clearly I have to make some changes!

I am now thinking "whew!" I have survived the 2 weeks on Xeloda and surely the side effects will be getting better during this one-week break. But this doesn't happen. I avoid too-spicy foods and carbonated drinks. I still use Kids Crest. I am unable to smile fully because when I try, it feels like my lips might rip apart. They are tight and discolored, and I notice some ulcers forming just inside the lips. Nothing a bit of lipstick can't conceal, right? I am having to constantly moisturize my lips with Vaseline Lip Therapy or ChapStick, but nothing seems to relieve the dryness. The ulcers are causing an increase in salivation which is just plain annoying. And when you think about your mouth watering, it makes it water even more! Trying to psyche myself out of this vicious cycle, and I'm feeling like a crazy person. Don't think about it, so it will stop. You are making it worse on yourself since now you are tensing up your mouth which is causing more irritated areas inside. Relax, Kim. Relax your lips and mouth. This seems to work. By the end of my "off" week, things are looking up, somewhat. I have a small crack in the skin of my thumb, which I have self-treated with Neosporin and a band-aid, to prevent infection.

It's three weeks since I started Xeloda, and it's time for a check-up. I first meet with Dr. Green's nurse, and I tell her of all of my side effects. She totally nixes the Neosporin/Band-Aid fix, and recommends Udder Butter, or something similar, for my hands. The idea is to prevent skin breakdown before it happens, by using this cream originally intended for use on a cow's udders. Lovely! The nurse also recommends that I use a baking soda & water solution before and after every meal in order to neutralize the acids in my mouth and prevent irritation and discomfort. By this time, though, I am feeling a little better and I don't think I need the baking soda swish at this time. Too bad I didn't have that information after the nachos & Diet Coke incident!

I see Dr. Green, and we discuss side effects, drug tolerance, and of course, the fact that my tumors are palpably smaller. She looks and feels, and agrees! We are all (Dr. Green, Danny and I) very excited. My blood counts are good. When we ask Dr. Green about my tumor marker levels, she say's "They're cooking." Oh my god! Danny and I completely deflate, thinking that she meant they were way-outta-sight high! She immediately clarifies that she meant they were not yet available. Talk about an emotional rollercoaster!

We also discuss the treatment plan. I ask if she still wants to start me on Avastin (an IV chemo agent) since the Xeloda seems to be working so well. She does. She explains that studies have shown them to work really well together. I'm all for it, of course. She's the doctor and I'm at MD Anderson, and I will do whatever they tell me to do. She wants to lower my Xeloda dose to try and moderate its side effects to a more tolerable level. While in my head I don't want to lower the dose, since the drug is working so well, my body is saying, yes, let's try the lower dose. I feel like I have failed at some level. I want the maximum dose, I want the cancer to die and die big-time. I think that Dr. Green can sense my feelings of inadequacy. She explains that she hasn't yet had a patient that could tolerate the max dose of Xeloda. Guess I won't be the first!

I had my first dose of Avastin and all went well. It's causing some mild fatigue, but I don't have time to stop everything in life. Too much to do with the kids and the business. I am finding that I am tired much earlier in the evening than I used to be, so I'm trying to get to bed at a more reasonable hour than usual. This is not always possible, but at least I am sleeping good when I do sleep.

A new side effect that has popped up is eye watering. Can't tell if it's from Avastin or Xeloda ... who knows? My eyes feel a little burny and watery. I've never had allergies before, but I do have a very mild runny nose, so I suppose it may be allergies since there's a first time for everything. I take Benadryl and it doesn't help. I take Claritin and it doesn't help. I try Zyrtec and it helps a little, but not completely. Will have to remember to mention this to Dr. Green. Don't like it -- makes me look sick! It still amazes me that I have this evil disease inside me and no one can tell! But the eye watering, which then causes me to blink more often, is making me appear sick. Maybe not "cancer" sick, but not well nonetheless. Hope this goes away soon.

My new Xeloda dosage regimen is 4 tablets, twice a day, one week on and one week off (instead of 2 weeks on, 1 week off.) Yesterday was my last dose of the one week on. I have 2 blisters on the inside of my lips, and the lips feel tight. I continue to avoid spicy food and carbonated drinks. Kids Crest is still working great. Still haven't felt the need for baking soda swishes -- guess my dietary changes have helped with the burning. My feet are now very sensitive and somewhat painful to walk on. My hands are tender. It's hard for me to open bottles, packaging, etc without having discomfort, so I ask for help a lot with those things (since I am rarely home alone!) I am using Udderly Smooth (similar to Udder Butter) on my hands at bedtime, and this has helped keep my skin intact, although my hands remain pretty dry throughout the day. It's hard to keep your hands constantly moisturized when you're working, typing, etc and washing your hands all day long. All in all, I think things are going well. The way I feel at this time, is that I can tolerate this new dosage... if things don't get any worse. We'll see what this next "off" week brings, and the following week "on."

Love every minute of life!

2010-10-10T18:10:00.007-05:00

My name is Mary, I am 46 years old. In Dec 2009, I felt a small lump in
a week, I went for my Mammogram on Dec. 30th, 2009. They took a lot of
pictures, I was moved from the big waiting room to a room by myself. I had
a feeling it was bad but still remained optimistic. They wanted to do the ultrasound. The Radiologist said she was done with the armpit but wanted to look at the one in the breast. I didn’t know there was anything in the breast. She showed
me the difference between the armpit and the breast. She said the armpit looks
Fibrocystic but the breast has characteristics of breast cancer. I left and came back 3 hrs later and did a needle biopsy on both areas. On January 4th, 2010 (had to wait 5 days because of New Years Eve) I got the call that the armpit was a cyst but the Breast was cancer. I couldn’t believe it I did not have breast cancer in my family. The next few weeks were a blur, surgeon consult, MRI, lumpectomy. I went for Surgery Jan. 15th 2010, it was a lumpectomy. The tumor was only 6mm and all margins were clear, no lymph node involvement. We were all very excited until a few
Days later when I realized I have triple negative breast cancer. Triple negative is a rare Sub type of breast cancer that only affects 15% of breast cancer diagnosis. It is very aggressive, high recurrence rate, and usually happens before menopause. When I realized my only options were chemo and radiation, I decided to do both. I did 4 rounds of chemo starting with T/C. I had a bad reaction to taxotere and had to stop getting it. I started taking A/C for 3 more rounds. Losing my hair was very difficult for me. I didn’t realize how vain I was till I was bald. Chemo was very difficult and I wouldn’t wish it on anyone. However, I still worked fulltime and stayed very active with my 3 kids (14, 10, 6) and husband. I ended chemo April 1st and started Radiation May 3rd and ended June 18th. Radiation was much easier than chemo but it still burned the skin and brought on fatigue. I am currently still working fulltime and keeping busy with my kids sports activities. My husband of almost 19 years was so good to me and stayed positive. Some of the things I learned are: stay current on checkups, you must become your own advocate, surround yourself with wonderful, caring people, love every minute of life, appreciate the help that is offered and take it, look at things with a whole
new perspective. I had a hard time watching the people around me at infusion and
Radiation so sick, it broke my heart. Just live life and go get mammograms!!!!!

Mary

We all deserve to have a beautiful life

2010-10-10T18:06:00.004-05:00

I´m a 33 year old Colombian and my story began last year on July 09 . I was diagnosed with a uncertain behavior tumor (possibly cancerous) on my right breast and doctors were so afraid because my mom died 11 years ago because of breast cancer and the genetic component is important, that´s why they suggested a bilateral prophylactic mastectomy because I didn´t accept to submit to the chemotherapy. My breasts were removed on January and I was reconstructed with implants and bilateral dorsal muscle flap. Unfortunately, my body rejects the implants and I got an infection with a bacteria called staphylococcus aureus that causes a capsular contraction, one month ago the implants were removed and now I have nothing than my skin and muscles in my chest. I have to wait for a year at least to have a new reconstruction. Today I´m a better person, I learned to look at me in a different way, to look at myself as a great person no matter how everyone else see me. I´m eating healthier and I´m taking all good moments with the people around me. We all deserve to have a beautiful life no matter if you have big or small breasts, if you are black or white, tall or short, thin or fat...all that counts is what you have in your mind and in your heart and the way you live your own life. WE ARE ALL FIGHTERS AND WE DESERVE TO LIVE BETTER.
In loving memory of my MOM...

2010-10-08T11:04:00.001-05:00

A recent diagnosis...stay strong!
Amber,

Thank you for reaching out to us. I know a diagnosis like this is not easy, especially at your age and when you have a large family. You will endure and get through this and be stronger. Your kids will help keep things normal for you and love you unconditionally. Prayers to you and your family.

Amy

My name is Amber and I am 25 years old. I was diagnosed with breast cancer two months ago tomorrow (08-05-10).. I went for my yearly exam and my GYN found the lump. I have seen so many doctors in the last two months that I am tired of them. I had a lumpectomy on Aug 31st and I am doing okay so far. While I was in surgery they tested and removed all of my lymph nodes under my right arm. Later at my post op visit I found out that the cells that the Pathologist saw in my lymph nodes where not cancer cells. They looked a lot like cancer cells but where not. I have had a very hard time dealing with the fact that I am going to have to have chemo. The only reason that I am being as strong as I am, is because I have 4 wonderful kids that I want to see grow up. It’s hard to believe that I am only 25 years old and I have cancer! Sometimes I do cry and ask why me, what did I do to deserve this? I do know that I will make it through this and after I am finished with chemo and radiation I will look back and say that it is ALL worth it. To those of you out there that are going through the same thing, you are in my thoughts and prayers.

Posted by Amy at 8:21 PM 0 comments
Labels: chemotherapy, lymph nodes, pathologist, radiation
Living proof that early detection and mammograms save lives!
Jessica,

Your grandmother is living proof that early detection does save lives. I am so glad to hear that she is doing well. Cancer effects not just the patient, but the entire family. Congratualtions on her good results!

Amy

My stepmother of over 10 years was diagnosed with breast cancer just a few
days before Christmas. She had no symptoms or signs. The cancer was not
found by self examination but from a yearly mammogram. At the beginning of
the year (2010) she went in for a lumpectomy to have it removed. Luckily
it was caught in time before spreading to her lymph nodes! The doctors
thought they had gotten it all but they didn't and she needed another
surgery to have the rest of the cancer removed. Since Jan of 2010 she has
been cancer free!! I'm so proud of her for fighting this battle. Nobody in
our family has experienced anything like this before. It was so sudden and
heartbreaking to find out the news! Our family is now closer than ever!
Thank you for allowing me to share this story.

Jessica

How Kim kicks off breast cancer awareness month...

2010-10-04T21:20:00.002-05:00

It's somewhat ironic that I would be kicking off breast cancer awareness month with the start of new chemo. Here is an update on what's been going on with me.

This week I had my repeat CT scans, ultrasound, and tumor marker levels done to evaluate the effectiveness of Faslodex injections, which I've been on for about 8-10 weeks. What I already knew before this week was that the tumors that have been palpable on my left back have grown. In addition to feeling them with my fingers, I can now "feel" them when I lay down or when I sit with my back against a chair, seat or sofa. Also I've had a mild cough that seems to be elicited by my turning onto my left side. And lastly, I have been frequently failing my own "lung test," which I have been doing regularly ever since I was originally diagnosed with metastatic breast cancer in 2006. (At that time, when I laid on my right side, I was unable to take a full deep breath in. I found out shortly thereafter that my left lung had a "moderate" pleural effusion, and that that lung was restricted down to about half its normal size due to the fluid buildup around it.) In the months following my diagnosis with stage IV, the treatment regimen I was put on was very effective, and all of my metastatic lesions, including the pleural effusion, cleared up. I had no further difficulty in taking in a deep breath, but I always "tested" myself just to self-monitor (I can be psycho like that!) Anyway, lately, I couldn't always get a deep breath in. It wasn't consistent, but it seemed like I had to be in just the right position to make it happen. I knew something was up, especially since I had already gotten my tumor marker results 2 weeks before my scans: they had again drifted upward, this time up from 32 to 40 (normal range is 0-38.)

Thursday was my appointment with Dr. Green to get the results from Tuesday's chest/abdomen CT, chest x-ray, ultrasound of back chest tumors, and labs. As I waited with Danny in the exam room, I told him that I did not have a good feeling about it. Unfortunately my gut feeling was right.

The ultrasound showed that the largest of the three back tumors had grown. The other two had not changed much, however, Danny and I both thought, after seeing them on the screen during the ultrasound procedure that they looked much more prominent and visible than on the first ultrasound... but what do we know?!

The CT scan of the chest showed "an enlarging left pleural effusion which is now moderate in size. The underlying pleura appears thickened, worrisome for malignant effusion with pleural metastasis." So the fluid around my lung is back, which explains my feeling of being unable to take in a deep breath. Additionally it showed enlargement of the chest (mediastinal and hilar) lymph nodes, and also a "new skeletal metastasis in T12" -- the spine. Great.

The CT scan of the abdomen showed some new lymph node enlargement in the retroperitoneal area (back of abdomen,) the same new bone mets @ T12 seen in the chest CT, and the real kicker: bilobar hepatic metastasis. I now officially have breast cancer metastasis to the liver. No longer can I say "Well at least it's not in my liver." All I can say is, THIS REALLY SUCKS!!

It was like I was punched in the gut. Dr. Green took a lot of time explaining what the new treatment plan would be, and she showed us the CT findings on the computer. The plan is now for me to discontinue all anti-hormonal therapy. No more Faslodex or Zolodex. I will continue on Zometa for the bone mets.

I will go on chemotherapy, which I haven't had since my original bc diagnosis in 2000. However, this one, Xeloda, is an oral chemotherapy agent. Great, I get to poison MYSELF, at home! I've read about it already, since Dr. Green had told me earlier that the next step would be Xeloda. I've read that it's an easy chemo, as compared to the big ones like I received 10 years ago, but it's not without side effects. I can expect some diarrhea and most likely "hand and foot syndrome" which is burning/redness/pain of the palms of the hands and soles of the feet. I will not lose my hair, thank goodness for the small things! The dosage is highly individualized. Dr. Green starts near the maximum recommended dose and will lower it gradually based on my tolerance of the side effects. I am to take 8 (gigantic) tablets a day -- 4 in am, 4 in pm. Two weeks on and 1 week off. After the first cycle, I will see Dr. Green to discuss side effects and possibly change the dose. After the second cycle (in 6 weeks,) I will be re-scanned and re-labbed to evaluate effectiveness.

Dr. Green also wants to add Avastin, another chemo drug, to my new treatment regimen. The FDA has recently decided to remove Avastin from the market, which has started a whirlwind of controversy among breast cancer patients who are taking it and having positive outcomes. I can only imagine being on a drug that's working and then having the government step in and say No, You can't have this anymore! The FDA's decision was to be made any day now, so Dr. Green wanted to wait before scheduling my infusion to make sure that they weren't going to pull it. Their decision turned out to be to postpone their decision until December. This is good for me! I am now scheduled to receive my first dose of Avastin at my 3-week checkup.

Avastin is given IV, and it also doesn't cause hair loss. It's not that I'm afraid to lose my hair. It's just that without hair, one truly LOOKS like a cancer patient to rest of the world. Right now, unless I tell people, no one has a clue that I am battling stage IV cancer!

I read some of Avastin's literature tonight, and I must say, I am scared to death! Nosebleeds, headache, high blood pressure, inflammation of the nose, too much protein in the urine, taste change, dry skin, rectal bleeding, tear production disorder, back pain, and inflammation of the skin are the most common side effects. One serious potential side effect is GI tract perforation!! Oh. My. God. If the cancer doesn't kill me, maybe the treatment will!

I pray that I have no serious side effects, and that these drugs will stop the progression of my cancer. Lord, please help me through this. My biggest fear is that something bad will happen, suddenly, and that my life will be abruptly changed for the worse. At least the cancer hasn't spread to my brain...

The right support will get you through...learn to accept help.

2010-09-07T11:26:00.003-05:00

Kim,
Thank you for your honesty and sharing your story with us. Learning to accept help can be difficult, but it is a time in your life when you really need support.
Amy

It was a routine trip for a mammogram procedure. The radiologist found a white spot that looked concerning so off I went for a biopsy. That was pretty scary, as I was not really sure what to expect. The doctor had done his best to prepare me but nothing can actually prepare someone unless they are going through it. After the biopsy I went home and waited for the results. 3 days later the call came it was DCIS, Ductal Carcinoma In Situ, the physician assistant went on talking about what it was, where it was and that we need to get a surgery date set up right now, the more she talked the faster her words came. I told her to wait, that I was not going to do anything for 2 weeks, I needed time to digest everything and that I had a zillion questions and I had people I needed to talk to. My sister, mother and a very good friend are breast cancer survivors so I got on the phone with them and explained what was happening. They were very supportive and gave me advice and the types of questions I need to ask and also told me to look on the Internet for more information and also call a cancer center near me and talk to them. I did all this and the more I searched the more information I found the more confusing I became. Not sure what to do next, I called my primary care physician and set up an appointment with her and shared with her what I knew. She was encouraging and let me know that it was OK to take some time. And that I need to keep a notebook and write down my questions and the answers I received, she also advised me to either take a friend or a tape recorder and let it record the entire time I am visiting with the doctor because later I will have questions and I need to remind myself what the answer was.

After the 2 weeks I set up my appointment for surgery, once the surgery was done and I got home, I did what I felt like I could do. If I couldn’t do it or didn’t feel up to it I didn’t do it. The hardest part was asking for help and then letting them do it. I sit here now, the night before my doctor’s appointment to check to make sure all is healing well and then in 2 days I go and visit with the oncologist to set up my radiation treatments. They want me to go everyday Monday through Friday for 6 weeks.

During and up to this point in time, my emotions have run amuck. Thoughts of suicide, thoughts of not going to the radiation treatments, thoughts of going back to work and then taking on a 2nd full time job, thoughts of my body is deformed and that I am no longer attractive not even to my husband, thoughts of what did I do in my life that caused God to hate me so much that He allowed this to happen to me. And thoughts of if I survived this, what is going to hit me next. And then let’s talk about the tears; at first they never came, I had to help my husband deal with this so I had to be strong. Once he got over the initial shock then it was my turn to fall apart, I have actually cried twice. I didn’t have anyone that I could call and talk to at that moment so I had to let the tears flow and then pull myself together. I feel better after letting the tears out, but feel worse because I cried you know the headache and puffy eyes that follows.

Cancer is a word that scares the bejebers out of people but with the improvements in modern medicine it doesn’t have to scare us. The best advice I can give you is to gather people around you who you trust and know will be supportive and let them help you. Either make meals, clean the house, or cry on their shoulders. We need the release and love that women can give each other.

I know that men need it too, but I am not sure where they can turn to, I wish I had some answers for them.

Love your fellow cancer survivor
Kim F.

My cup is 1/2 full!

2010-09-07T10:53:00.003-05:00

Jenine,

You have such a positive attitude and this is good medicine! You inspire others with your story. Thank you so much for sharing it with us!

Amy

My motto has always been "my glass is half full". April 27th I discovered my lump it’s the size of a golf ball. May 12, I saw my OBGYN and June 1, I was diagnosed with triple negative invasive ductile carcinoma. I am 34 years old. Tuesday July 6, I had my surgery to remove my lump, (who I have named Elvis) and I meet with my Oncologist on Monday. Now my motto is " my cup is 1/2 full". LOL! I started a site on caringbridge.org so that my friends and family could see that cancer was not something to be sad about. it was not going to ruin my day. The sun is shining, the birds are chirping, and life is filled with reasons to smile. Dr. Brown told me I would lose my long hair, that was the only time I cried. I had donated my hair 4 times to locks of love. Now I will get to do a fifth and final time. hair will grow back it will take 4-5 years to get this long, but it will grow back. I have received tremendous support from my co-workers up and down the east coast. As far away as Baltimore to Greensboro North Carolina. The boss even bought me a new touch pad for my computer when she heard I couldn't use my right hand for the mouse. I have gone to the ACS relay for life every year for 4 years with my friend Jen. My husband the manly construction worker pretended to be an Italian hairstylist while he washed my hair in the sink because I couldn't do it. He makes me laugh randomly and often. My Best friend Joy has gone to every appointment, stood by my side for my biopsy, bought me anything she could find that was pink and cleaned my house. Both my sister-in-laws took care of my beloved dog, sent me literature in the mail, and found beautiful jewelry that had pink ribbons on it. My estranged father now wants to be friends on SKYPE. So I ask. Why be sad? Why cry? Why waste a beautiful day worrying about something that I did not cause to happen? I have a wonderful support group, even the children of my friends have brought me pink flowers, made pink candy, and plan on participating in the race for the cure in October. I have no reason to be sad, no reason to cry, because my life is surrounded by love, friendship, hope and support. Cancer will not ruin my day, because this is the only July 17th, 2010 that I will ever have, and I plan on enjoying it! Remember laughter is the Breast medicine, and Elvis has left the building! Live each day with no regrets, smile at a stranger. have faith in humanity. Don’t sweat the small stuff. Save your energy for something fun don’t waste it on little things. I may live for 30 days I may live for 15 years, but I plan on living, laughing and loving as much as I can, while I can, because my cup is 1/2 full!
Thank you for letting me share my abbreviated story and I hope it will encourage others to look on the bright side.

God bless my mom...

2010-09-07T10:46:00.004-05:00

Thank you for sharing the story about your mom. Early detection does saves lives! Listen to your body.

Amy

I would like to share the story of my mom, Yolanda.

My beloved mom felt a lump in her left breast, she did not pay much attention and a couple of months later it became a little harder and her skin became like a little hard black and blue. She went to Mt. Sinai Hospital, Miami Beach, Florida to see Dr. Juan Paramo (God bless him) and in a matter of three weeks, we sadly found out she had breast cancer in her left breast (where the little hard black and blue was), also in her right breast (noticeable through mammogram only) and in both glands under her arms.

It has been such a horrific roller coaster ride: in less than a month! My mom is so in shape and so active that she was still working from 7am to 12pm a part-time job in a beautiful restaurant in the heart of South Beach, after work she will work on Lincoln Road (beautiful outdoors mall in South Beach) and almost everyday she will run from the South Beach heat by entering Macy's and as feminine and girlie as she is, she would always find something pretty on sale to buy.

My mom is loved and care by my dad Luis, my son and her only grandson Richard(Richie) and myself. My son is on vacation and my dad is retired and I returned to work Tuesday July 20. She has a nurse that comes every day to cure her wounds and her drains (she has four).

My mom is so brave, so courageous, so beautiful. We love her and we pray for her speedy recovery.

Her doctor, Dr. Juan Paramo, tells us that since it was total amputation of both breast and all cancerous tissue, she will not need radiation nor chemotherapy, so she is happy.

For now on, I will help as much as I can for cancer research because we need to find a cure.

Cancer is an ugly thing and I have faith in God that we will find a cure soon.

Thank you very much and God bless my mom.

Cancer has made me fight for what I want!

2010-09-02T10:41:00.003-05:00

Cindy,

Thank you for reminding us that sometimes a "lump is just a lump". Yet other times it is not. It sounds like you have a great group of doctors that treated you, but also a great group of friends that supported you as well. It is what gets us through.

Amy

My name is Cindy, I am 48 years old, I was diagnosed with breast cancer October of 2004. In 2003 I had a lump in my breast, I had a lumpectomy, and it was not cancer. Almost one year later, I had another lump, I did not think anything of it, because I had a lump a year ago, and that was nothing, the lump was getting bigger, I went to see the ARNP, she sent me for a mammogram, and then for a ultra sound, they did not think it was cancer, I went to my surgeon, Dr. Renz, he looked at everything, and did not think it was cancer, he took a biopsy, and gave me some antibiotics. That next week they called me and told me that it was cancer, Dr. Renz wanted to see me that day, that was Wednesday, we were going on Vacation on Friday, we had to cancel, I was having surgery.

I had surgery on Friday, and 2 weeks later, I went to see Dr. Ghosh, and started Chemo the next week, I wanted to get this done, and get back to the “new normal”! I had chemo treatments every other week, 8 treatments in all. I started radiation before my last chemo treatment was over, I went to radiation 5 days a week for 6 weeks.

The American Cancer Society is great, a volunteer came to see my in the hospital, she brought me information, and sat and talked to me, I knew that I was not alone, there was someone there to help support me, when I need it. I went to Look Good Feel Better, and the American Cancer Society helped me with a wig, this is a great program, I try to volunteer when I can, I want to give others the hope I was given by everyone I met

I knew that I could not let this beat me, my husband and I had only been married 3 years, and we really enjoy being together, and I was not going to miss out on any of our time together. I can say that I never thought my husband would have to shave my head, and I know it was not what he signed up for!

My daughter and son are my everything, and to this day, I can still see their faces when I told them, it brings tears to my eyes every time I think of it. I have 2 step-children that I want to see grow up.

Seeing how it hurt my parents, I can not imagine your only child telling you that she has cancer.

My Granddaughter turned 1, the week after I had surgery, I want her to know me, and to have a close relationship with her, like I had with my Grandpa.

Cancer has made me fight for what I want, and I want to enjoy my family and friends!

I have been touched by so many friends, my girlfriends from High School (Zelda , Connie, Cecilia and Alicia) the day I had surgery, and came over when I got home, Zelda had Kolaches for me, she knows that they are my favorite! Debbie and Lisa would come over to see me, and call, Debbie would send me a card every time I had a treatment. Lisa started the Schlitter Sister’s, we walk every year at the Especially for you Breast Cancer Walk. My co-workers at Paetec were GREAT, they had a plant waiting for me when I got home from my first appointment. They would send me get well cards, phone calls, and gift cards just out of the blue. They are very special friends. I have a scrapbook with cards, and pictures of my “adventure”, they are very special to me.

Special Thanks to Dr. Renz for taking time to care, and take a biopsy, Dr. Ghosh, Dr. Merfeld for answering all of my questions, every nurse and staff member that was there for me, to Leza for being able to get that IV in there! To My husband has been to every chemo treatment with me, he would let me squeeze his poor hand , while they were trying to put the IV in me. He would do anything for me, he was always there for me. My kids and Granddaughter made me want to go on to the next day. My parents and in-laws for calling and seeing how things were going. There are so many that have cared, and made a difference, they are all special to me.

It has now been over 5 years and I have seen my son get married to a great girl and they adopted the sweetest little boy! My daughter is doing great raising her daughter on her own and she is going in to first grade. I sometimes cry when I realize that I could have missed this!

I cannot imagine going through this without everyone that has been there for me.

Cancer has made me realize what is important in life, we need to realize this before it is too late, and we cannot make up for it later!

Cruise for the Cure

2010-09-02T10:25:00.002-05:00

Amy,

I understand your feeling of wanting to do something. Big or small we all can do something to promote breast cancer. Thank you for organizing an event in your area that promotes awareness.

Amy A.

When I was younger, I remember my grandmother going through her 2nd chemotherapy treatment back in 1991, and later lost both of her breasts due to Stage 3 breast cancer. Not only was she going through it herself, so was her younger sister who is now a survivor of 50 years as well as her cousins on her mother’s side.

While receiving tremendous support from both family members and friends, I decided to organize "Cruise for the Cure” in South Florida after I had a mini scare with breast cancer in February of 2008. Over these past decades, a few of my family members, and friends were diagnosed with breast cancer. I know the feeling when you know that there is nothing you can do, but go to the doctors, do treatments, and wait to see how you’re feeling days later after you get treated. It’s very hard to watch someone go through this for many years, and watch them suffer from this awful disease that attacks both women and men of every age group.
I finally decided to do something to help support both Women and Men with this disease. Last year, “Cruise for the Cure” was held at WAHOO’S of Lighthouse Point, Florida. Together we raised over a thousand dollars with a total of eighty-seven cars that entered this event, and was escorted by Broward Sheriff’s Office down A1A, 14th Street Causeway, and then met our final destination down Federal Highway at WAHOO’S in less than a month notice. With this event, my goal is to raise three times as much as I did last year. For our 2nd Annual “Cruise for the Cure”, on behalf of the Pink Piston’s - We would like to share this exciting memory with HOOTERS of Boca Raton on Sunday, October 10th, 2010 in memory of some of our families and friends, as well as one of the HOOTERS Calendar Girl’s that fought this disease; some winning the battle, and some not. Together we can help support Breast Cancer Awareness for the one’s we love around us, the women and men of our community, and to show HOPE, COURAGE, and FAITH for them.

Amy

Kim

2010-08-27T17:59:00.005-05:00

Hello all!

My appointment with Dr. Green went well. Armed with my handwritten list of topics to discuss and questions needing answers, she patiently listened and answered and addressed all of my concerns. I must say that I feel much more at peace than I did before. I guess you could say that my pity party is officially over! For now, anyway! You know, sometimes having cancer just gets you down. The living with uncertainty, the fear of what's to come with your next scans ... its gets to be too much sometimes, no matter how much you busy yourself with life.

I informed Dr. Green about the side effects I'm experiencing from Faslodex: "faslo-breath" and chemical-smelling uring and sweat. I mentioned that in my research, I had not come across any mention of these side effects, to which she replied that I was "special." Figures! Anyway she said that she had not heard of anyone else having those side effects, and she thought it may have to something to do with the solution that the Faslodex is prepared in, and not the Faslodex itself. I must admit I have my doubts about the accuracy of this explanation. I said to myself, "I guess we'll see if I am having absorption issues with the Faslodex if it ends up not working." I really need to learn to trust my doctor, trust that I was led to MD Anderson and trust that I am in the best place receiving the best care in the world. Based upon my experiences with my health care issues, however, I am always on alert, questioning everything, and receiving all information with cynicism.

I asked about the Faslodex dosage issue: 250mg/month vs. 500mg/month. She explained that there was only one study indicating that 500mg/month was more beneficial than 250mg, and that more studies needed to be done before the dosing recommendations would change. Additionally, she said that many insurance companies are not covering the higher dose, and the cost is significant. So for now I remain on 250mg injection per month.

I also mentioned my anxiety about being able to feel my "metastatic deposits" that are in the subcutaneous tissue on my left flank, and feeling like they were growing. She said that they may indeed be growing since I am off of my previous medication, Aromasin, and while we wait for Faslodex to begin working. Since the Faslodex takes at least 5-6 weeks to be at full therapeutic levels in my system, it is really just now getting in and having the opportunity to take effect. Oh the patience required of us cancer patients!

Dr. Green's feeling were that we have not given Faslodex enough time to work. She asked that I sit tight and give it a little more time. I am scheduled to have more scans and a repeat ultrasound of the latest lesions at the end of September. I can do this!

Who inspires me...

2010-07-31T07:57:00.003-05:00

Cindy,

Thank you for sharing this story about your dear friend Dorothy. We all need people in our lives that inspire us. Also, thank you Dorothy for sharing your life story with us.

Amy

In the beginning............... In 1953, at the age of twelve, I was diagnosed with a severe endemetriosis and prescribed a medicine that the family doctor felt confident would correct the problems I was experiencing. Later, determined to be massive daily doses of estrogen administered orally. I remained on this medicine until I was 29 years of age. In 1966, when I was 25, I came to live in America from England. In 1970, two weeks after my 29th birthday, and in the midst of a very abusive marriage, I discovered a lump in my right breast very close to my armpit. It did not hurt at all. I decided I would ignore it, assuming it would go away, and I continued to enjoy my stage work as a dancer. I believed that if it did not hurt, it was not serious. After about two months, I was encouraged to consult with a doctor who almost immediately referred me to a surgeon. After a thorough examination, I was advised that without immediate surgical intervention, my life expectancy was 3-6 months at the most. This particularly aggressive cancerous growth had presented very close to my right lymph gland. So at 29 years, I received the surgery to hopefully save my life. I was offered two options for surgery, one less invasive, which would require chemotherapy and radiation. The other option was more invasive surgery without chemotherapy and radiation. I selected the second option, as I wanted to keep my ankle length hair, which was a very important feature for my stage work. I had recently been offered an opportunity to perform in a nightclub every Saturday night. Surgery was performed, and it was found that the cancer had spread. The removal of 24 lymph nodes was necessary (20 of which were found to be positive) together with the right lymph gland and pectoral muscle. I had eight hours of surgery, 78 stitches and three weeks in the hospital. My surgeon felt confident that they had “got it all” but that a ten year waiting period would now be in effect for any re-occurrence. Whilst recovering, I became curious and needed to look at my body. Indeed it was not a pretty sight and one I will never forget. However, the doctors were confident that the surgery was successful and that my young life had been spared. I was told whilst in the hospital that I (at the time) was one of the youngest women on record to have this dreadful disease. During the course of my recovery, I was introduced to the “reach to recovery” programme and a wonderful lady whom I shall call Claire. Claire represented the American Cancer Society, and it was her job to visit people like myself and guide them into the use of the breast prosthesis. Which she did so very well. A very important part of the psychological healing and adjustment required to “face the world” so to speak. She assisted me in finding the correct style for me, and then proceeded to teach me how to re-use my arm. Because of the guidance and support given to me by the American Cancer Society (Claire), I gradually gained confidence in the knowledge that an artificial breast can look and feel perfectly natural. I could once again face my world on stage and off. Learning to re-use my arm was a serious challenge because the surgery was so extensive. However, I was determined to do so, I redesigned my dance wear and some time later (three months), I resumed my stage work once again. It was not revealed to me, but to my husband, that because of the type of cancer I had (aggressive and feeding off of my ovaries) I must have a total hysterectomy as soon as I was strong enough, in addition, under no circumstances was I to become pregnant. Although 24 lymph nodes were removed, and the last four were negative, if there was one dormant cancer cell remaining, it could and would revive, multiply through my ovaries and the cancer would reappear. In consequence, an unborn child and I would perish. Sadly, some time later a pregnancy occurred as previously stated, not having been made aware of the facts, I consulted a gynaecologist as I was not feeling well. My remaining left breast was extremely enlarged and very painful. The gynaecologist/surgeon discovered the 11th week pregnancy and requested a thorough physical. Upon examining my upper body, he was profoundly disturbed by the recent radical/radical mastectomy. He immediately ordered copies of, any and all, reports. I was subsequently told that an immediate therapeutic abortion was necessary to be performed, followed six weeks later by a total hysterectomy. My life was once again in jeopardy. It was explained to me that this procedure would put my body into an immediate surgically induced menopause. I was reminded that without this surgery, I would once again face certain death. I was unable to accept the fact that at 30 years of age, not only would I lose the foetus in my womb, but I would never be able to bear a child of my own. Acceptance was an unbearable thought, and with that in mind, I consulted several other gynaecologists/surgeons who sadly gave me the same response, with the exception of one. This particular specialist had a very different “solution”. Because of his religious beliefs, he explained his alternative to me in the following manner: I would be monitored closely during the course of my pregnancy. In the eight month, I would enter the hospital, wherein, the unborn child would be removed from my body and I would eventually pass away from the effects of the cancer. In the interim, I would be encouraged to seek and select the adoptive parents within the realm of the surgeon’s religious community. I would be permitted to name the child and choose the adoptive parents. It was also explained to me that I would prepare for my funeral as I would not survive a full term pregnancy. That is why the unborn child would be removed from my womb at eight months. After many connecting moments with my conscience, I came to the very sad conclusion that I wanted to live. Carrying the knowledge of the threat attached to my pregnancy, I proceeded with a therapeutic abortion. Seven weeks later a total hysterectomy was performed. My consolation for this life saving procedure (mine) was in the thought that I could eventually adopt a child. I was supported by friends to think in this direction, which did indeed give me encouragement. The challenge of being unable to bear a child began to invade my mind. So I began extensive enquiries about a future adoption. Once again I am challenged with the same response from the various agencies through which I made enquiries. Because of the severity of the cancer, I was too high a risk to allow any adoption. After receiving this news I was in a state of despair and feeling myself fading away. I consequently and eventually consulted a psychologist. During the course of my visits with, her, the doctor guided me very gently and one day said “What would you like to do with the rest of your life?” I answered, work with animals. This ultimately led into buying my first Yorkshire Terrier from England. I did not know it then but this Yorkshire Terrier would be the beginning of the rest of my life.
In the year 2000, I became aware of an unusual feeling of discomfort in my remaining breast. This obvious change in my body compelled me to seek medical attention. The initial examination did not reveal anything, but my sense of urgency remained. I persisted in my pursuit to discover what was ailing me, and eventually, with the help of an enlarged ultrasound (mammogram did not reveal anything) two tumours were discovered in my breast. Both were of the aggressive type, one was attached to my rib and the other floating in the main breast area. Needless to say, another mastectomy was performed and once again my life had hopefully been spared. Six lymph nodes were removed, four of which were positive, and the last two were negative indicating that this time the cancer had been hopefully stemmed early.
I recovered to resume my journey through life. I had entered one of my Yorkshire Terriers in the Kennel Club of Philadelphia dog show, and determined not to be deterred by being breastless, and encouraged by my dear friends and colleagues, in the breed, I did in fact show my girl. Holding her lead was painful and difficult, as I had not regained full use of my arm, but I persevered. I now did not have any breasts at all and was acutely aware of their absence. However as the saying goes, “Stiff Upper Lip” I eventually ordered two full breasted prosthesis, slightly larger than my natural breast size (WHY NOT)!!! I have been cancer free (in remission?) for almost ten years.
It should be well noted that, at no time did I receive any chemotherapy or radiation, treatments. I had planned to do so when I had my ankle length hair cut off in three stages and sent to Locks of Love in Florida. But I changed my mind. My life today at 68+ is full. Breeding, exhibiting, and more recently, provisionally approved to judge my beloved Yorkshire Terriers, AND, for the sheer joy of doing it, I am also an accomplished ballroom dancer presently at silver level, with aspirations for top level which is gold.

The latest on Kim

2010-07-27T22:22:00.005-05:00

Hello all,

The pathology has come back on my left flank nodules as being "metastatic deposits." This new area of cancer is unchanged from my previous tumors: ER+, PR+, HER2-. So I remain on anti-estrogen therapy. I am now on Faslodex injections.

I received my first dose over three weeks ago, 500mg, in two 250mg intramuscular injections to the back side. I received a 250mg injection two weeks after that. I am to receive another 250mg injection next week, and then I'll get a 250mg injection every four weeks after that. The injections weren't that bad at all! I had really worked myself up into a tissy (sp?) because I absolutely hate IM injections. I'm used to the IVs at this point, and I've even grown used to my monthly Zolodex injections into my belly fat, but IMs usually hurt! I am happy to say that evidently I got a nurse with good technique because it didn't hurt at all. It was odd, though. I must say I've never got an injection quite like it. It took about 30-45 seconds for each syringe to be emptied into me, all the while the nurse was massaging the muscle. It was some thick stuff! Dr. Green had told me it was going to be z-tracked (a technique used on some medications,) but this was definitely not any z-track technique that I'd ever seen or learned about in nursing school. I'm growing weary with always critiquing every aspect of my care ... at this point I was just glad it didn't hurt... at first. Shortly after the injections I could feel the injection sites getting sore. The soreness was pretty intense for a few days, but tolerable.

I developed an unusual chemical-like taste in my mouth and subsequent bad breath (which I've dubbed "faslo-breath") about 30 minutes after the first dose. My urine had a similar peculiar odor to it, and after one of my very few workouts of late, I noticed that even my sweat had the same odor! How lovely!!! These symptoms lasted for about 4-5 days and gradually dissipated. The second dose, which was half the dose of the first loading dose caused the same side effects only slightly less intense than the first dose had.

Of course I have to look up whatever I can, so I did some Googling on Faslodex and its side effects. Wanted to make sure that the side effects I was having wasn't something really bad like it was overwhelming my system. Isn't that so medical-sounding ... not! Nowhere did I find any mention of the side effects that I was experiencing. Just great! I did find lots of reports of injection site soreness, which seemed to be the worst of most women's side effects.

In my searching I had stumbled upon a forum-message-board-type site called inspire.com, in a "community" called "Advanced Breast Cancer." There were many posts that mentioned Faslodex, and there were also many discussions going on about all aspects of womens' stage IV breast cancer journey: emotional, physical, medical, etc. What I really liked about it was that it was active and current, and so relevant to what I'm going through. As I've said before, there are way too many of us out there! I read a lot and posted/responded some myself, and went way beyond just looking up Faslodex.

However, what I did find out about Faslodex was somewhat disconcerting to me. I read that just last year, a four-year study was completed that showed that giving Faslodex 500mg every month instead of 250mg was more beneficial to the participants. Specifically, it extended life. I read about several women whose doctors had upped their dose after learning of these study results. It was a few women's understanding that the new "standard" Faslodex dose was 500mg per month instead of 250mg regularly prescribed before the study. My doctor had not told me of the study, and my plan of care was to get 250mg a month.

I then specifically looked up the study. I read all of the results, and I discovered that the higher 500mg monthly dose of Faslodex extended life by one month! hmm, I thought. Two IM injections a month vs. one a month and all I get is one additional month to live?! Totally not worth it!

But I quickly came to my senses, and realized that the one month was the "median" in the results. Meaning that some women may have lived much longer than that and some women probably didn't respond at all. I tell myself that I could possibly benefit from the new dosage for many, many months or years! So armed with that information, I called to schedule an appointment with Dr. Green to discuss the new dosage recommendations. She couldn't fit me in for two weeks. :( I must wait and be patient.

Meanwhile ... In my research I also learned that Faslodex can take 3-6 months to work. Okaaaaaay-eeee. That seems like a long time to me. Especially since I am able to feel the "deposits" on my back myself. At any time. Very often. And especially since I can feel them growing. Not sure if I can feel them (more than one) because I know there are more than one now, or if they are actually getting bigger. They feel like they're getting bigger to me, which is worriesome, of course. And I am feeling some other changes, although none are severe. I feel a heaviness in the middle of my chest when I lay on my back. I feel some discomfort in the same area when I inhale deeply, from any position. Sneezing is also uncomfortable.

So needless to say I am really anxious to see Dr. Green and discuss all of these things. The growing deposits, the Faslodex dosage issue, the changing feelings in my chest. I would feel much better if she would send me for scans and bloodwork. If she does decide to, it will be more waiting, as the tests are never ordered for the same day and then it takes a few days to get the results. I am also going to ask her if I she thinks I could benefit from Xeloda while we wait for the Faslodex to kick in. I am willing to take both at the same time! I am simply not comfortable with waiting 3-6 months for the Faslodex to work while I can feel things growing in me! With being able to feel the lumps growing and also having the changing sensations in my chest, it makes me wonder what is really going on inside. Is it the chest lymph nodes? Is it my lung? Will my tumor marker level be rising? Too many questions, too many worries ... must get answers!

Support and encouragement make a difference...

2010-07-16T07:38:00.004-05:00

Thank you Trish for sharing your story with us. Congratulations on being CANCER FREE! Celebrating life is what it is all about.

Bless you,
Amy

My name is Trish and this week, I am one year cancer free. I was diagnosed with Stage II breast cancer in April, 2009. On May 7, 2009, I underwent a bilateral mastectomy with a TRAM flap reconstructive surgery. Six weeks later I started my journey through eight chemotherapy treatments at Duke University in Durham, NC. With those treatments came the hair loss, weakness, and severe bone pain. My husband, four children, other family members and friends were right by my side through the entire journey, lifting me up and continuously encouraging me. I could not have made it without them. My hair grew back very slowly, but finally, on May 31, 2010, I took off my wig and am now celebrating a life free of cancer.

Continue with follow up...

2010-07-16T07:30:00.004-05:00

Brenda,

You have so much courage. Thank goodness you were doing your monthly breast exams and you found your lump. You took control. We are faced with making difficult decisions about our health. Bless you on your journey. You are a survivor!

Amy

I was told back in 2002 that I had breast cancer (ductial) and had a lumpectomy done at that time. This was followed by mamo's every 3 months for a year. Then they told me that all was fine and I should have a mamo done once a year. Well this year, February 2010, I found a lump in my left breast and went in for a mamo, this lead to a digital mamo followed by a surgical bio. after all of this they said my cancer was back. I was told I could do nothing and wait it out or I could have a total bilateral mastectomy. And put an end to this cancer business. So on March 24th I had both of my breast removed. My path report stated that in fact I had ductial cancer in both breast not just the left side. I feel very lucky! Now I must make the choice or rather to have reconstructive surgery or not. I'm still healing from my surgery but have to say I'm glad that My fight has been won.

Thanks
Brenda

My conversation with Abby...

2010-07-16T07:17:00.004-05:00

Currently going through the motions of breast cancer at times can be hard. It has been over 6 months now with many tests from mammograms, x-rays, MRI’s and 3 Biopsies. Still not knowing and not being treated promptly. I see how other women young and old can get very frustrated with the way things are handled.

I just turned 45 July 1st. I have a 7 yr old boy and 5 yr daughter. They are the reason I fight and continue to fight this cancer that is now plaguing my body. Now being told I will have to undergo a mastectomy is even more icing on the cake.

Both times I was told I had breast cancer over the phone at work and what I needed to do. Still I’m in shock and it seems so surreal to me that it is even happening. Which, I know now many have felt the same way and it is heart wrenching to say the least.

All I want to do now and always have is to let others be aware how important it is to go do the check ups. I did just one yr I had skipped due to moving over 3 times it was chaotic. Now just trying to deal with what news I’m to expect next you know.

I’m writing just to say how I appreciated your web site and the on going support and wiliness to continue to help others out there. Not only you your family, friends and co-workers are affected.

My god! I never knew how loved I was until this terrible cancer attacked me.

My next step is a visit with an oncologist and I hope a plan to save my life.

How do I let others know other than web sites how important this is I know you have ribbons and about the ribbons how do others use them. My day care made me a ribbon and they put the name of all the kids on it. It was breath taking.

My son wrote me a special note. Then I lost it.

One day I hope to share my story with other women and help them fight this Breast Cancer. I fought many things this has got to be the most challenging one but I’m a good fighter! I fight for my right to stay alive for all of mankind to see we women can beat this.

Take Care, Keep up the Good Work!
Abby

Abby,

Thanks for taking the time to write! I appreciate your kind words.

It is so important to be an active advocate for your own health! I have a LOT of experience dealing with the medical establishment, and believe me, I know to stay on top of things. If something doesn't sound right or even feel right, you must question and get 2nd 3rd, etc opinions. No one at any hospital or clinic can know everything about you as well as you! I wish you luck and prayers on your journey.

In my opinion the pink ribbon campaign is multi-faceted. In one respect, it's a way for friends and loved ones to show support of someone going through the breast cancer journey. In another, it's a bridge to reach out to others to increase "awareness," so women take better care of themselves so that cancer is detected earlier and hence their chances of survival are increased.

Kim

Yes, you are absolutely right! So, many women really need to take control and value the seriousness in this cancer. You certainly do have my permission by all means. We meaning women/men young and old need to know we are not alone on this journey to survival and a helping hand is just a second away.

God Bless you and taking the time to read my story! I’m sure the next will be a positive one for all to see!

Abby

News from Kim

2010-07-01T15:06:00.006-05:00

Hello all,

Another update on my stage IV breast cancer journey. Monday I received mixed results from last week's scans. A couple of chest lymph nodes actually decreased in size, while a nodule in my left lung increased slightly. My tumor marker (CA 27-29) remains somewhat stable at 32 (1 up from 31 2-1/2 months ago, yet still within the normal range of 0-38.) Dr. Green deemed the results not conclusive enough to move on to the next level of treatment. Not significant enough growth to discontinue the use of my current med. Once we put a drug behind us, there is no going back to it. And the more drugs we put behind us, the less there are in front. Once you've used up all available treatment options, well ... clearly it's not good.

However, Dr. Green was very concerned about the marble-sized lump I discovered a couple of months ago on my back left rib. We looked at it on the chest CT scan and yep, there it was, between my skin and ribs. Not on the ribs. There was no mention of it in the radiologist's report (x-ray and CT scan) -- quite disconcerting to me, especially since I had mentioned the finding to both the x-ray technician and the CT technician. I had also specifically requested that the CT scan tech place a note on my chart/films so that the radiologist reading the scan would be aware of the new issue and could take a closer look (to which she replied "Oh they look at everything.") I said that regardless, I would appreciate it if she would put a note or mention it to the radiologist, since it was new and I was concerned about it. Evidently, either she didn't do as I requested (bad enough,) OR, the radiologist didn't pay attention to the note. In any event, the radiologist failed to notice the nodule. There was no mention of it in the CT scan report. Thankfully, it was palpable enough and slightly tender so that I found it myself and reported it to Dr. Green.

Dr. Green felt the lump and was definitely concerned. She recommended an ultrasound with a possible fine needle aspiration (fna) biopsy. She said that if the lump was found to be more cancer, then she would definitely change my medication from Aromasin (daily by mouth) to Faslodex (an injection, not sure how often,) and it was scheduled for 3 days ahead, which brings us to today.

Today I went for an ultrasound of the nodules on my left flank area (a much more medical term than left back rib area!) First the ultrasound tech simply scanned the area while I laid on my stomach. The bad news was that she actually found 3 nodules instead of 1! One large one, one medium, and a third that she said was small and "indistinct." She left to show the radiologist the ultrasound results, and returned to inform me that yes, a biopsy was definitely indicated in this case since the nodules appeared to be solid. Okay. Danny wasn't allowed in the ultrasound room with me, but when the tech left to prepare for the biopsy, I texted him and my sister to keep them up on the latest news, and also so I wouldn't just lay there and cry. My last needle biopsy was not pleasant, but this time I wouldn't be watching the screen like last time. I told myself I would never do that again, as it was really traumatic to watch while feeling it too. The radiologist came in and explained what was going to be done. I asked her what other conditions the nodules could be if they weren't cancer. She said that if they were closer to the skin, they could be neuromas, but they weren't close the skin. She said that her list of things it could be besides cancer was short, but there was a slim chance that it was something else (but she couldn't name anything.) I said "What, some new disease that you can put your name on for discovering it?" which got everyone in the room to laugh. Back to the business at hand ... first she numbed the area with lidocaine, an anesthetic that is injected into the tissue. THAT hurt! Then came the needle to actually perform the biopsy, which wasn't so bad but for a few brief, painful moments. Unfortunately she did not get enough tissue during the initial FNA and had to do it again! Ugggghhhh! It was nothing nice! After that, Danny was allowed into the room, where we waited for the pathologist to return with some "preliminary" results from the cytology lab. Not surprisingly, based on my earlier conversation with the radiologist, the tissue was confirmed to be malignant -- what she called "metastatic deposits" in the muscle. Very disappointing, to say the least! They will run all the usual pathology on the tissue, including ER, PR, and HER2 testing. I will see Dr. Green next week, when we'll discuss my next treatment options. I suppose that will ultimately depend on what the pathology report says.

I am glad they will be running more of my tumors through the pathology process. An estimated 20% of HER2 negative tumors will convert to HER2 positive at some point in the metastatic disease process. Not sure if convert is the right word to use, but what I'm saying is that since my cancer was HER2 negative before, there's a 20% chance it may be positive now ... Which, in my opinion, may be helpful in that there would actually be more treatment options for me than strictly the estrogen-related ones. More options sounds good to me!

Well, that is all for now. Another setback, but again we are waiting for more test results before we'll know what's next.

Thanks for reading, and for the prayers.
Kim

Kim's update

2010-06-24T08:29:00.004-05:00

Time is just flying by! Can't believe it's been over 2 months since my last update. In my last post (April 7th) I was awaiting test/scan results to evaluate the effectiveness of my new med (Aromasin) and also to check my femur's stress fracture.

So, here are April's results: First, the femur showed MUCH improvement, and did not "light up" on the bone scan at all. MRI of the femur also showed much improvement, which Dr. Lin (orthopedist) said confirmed that it had indeed been "just" a stress fracture (as opposed to a new metastatic bone lesion.) Yay! What relief! Not wanting to risk another fracture, or any kind of bone damage, I was prepared to stop running, and I admitted this to the doctor. Although previously Dr. Lin had said that I could possibly begin running again (very slowly and on a soft surface -- not the streets where I am used to running) if I showed healing and was feeling no pain, he now seemed to agree that not running would be best. I say "seemed" because he really didn't comment when I said I would not run any more. But he didn't dispute it or tell me it was okay, either. At the time, I was okay with the new plan. I fully intended to pursue other avenues of getting fit, such as swimming, power walking, dancing, and exercise classes. Back to that on a later date.

Although my femur was sitting pretty, sadly, the same could not be said for the rest of me. Dr. Green informed me that some of the lymph nodes in my chest had grown slightly, as had some of my lung nodules. Not a good start for my new med, Aromasin. Additionally, my tumor marker had risen yet again, to 31 (normal range is 0-38.) Here's my previous discussion about it from earlier this year:

Also, Dr. Green said that my tumor marker (CA 27-29) was within the normal range (0-38,) so that was good. She was right that it was in the normal range -- it was 18. BUT, in looking back at (well, studying) all of my previous CA 27-29's, it actually is a little elevated. At my first visit to MD Anderson in 2006, it was 70-something. A month later, 50-something. Three months later, 37. All since then have been below 12! So since early 2007, my level has been holding steady at less than 12. Now it's 18. Very disconcerting...

Dr. Green was not concerned, as 31 was still in the range of normal. I was VERY concerned! She thought that the ever so slight growth seen in my chest could have been simply due to the location of the CT's "slices," so she wanted me to stay on the Aromasin to give it more time, and she recommended that I be re-scanned in 2 months...

Which is where we are today. On Friday (2 days ago) I had my repeat chest x-ray, CT scan of the chest, and blood work, including tumor marker level CA27-29. Tomorrow I am scheduled to see Dr. Green to get the results. I try not to think about it. It's been a long 2 1/2 months of waiting. In the meantime I have discovered a small marble-sized lump on a left back rib. Hoping that is nothing, but I did mention it during my CT and x-ray to make sure it got its picture taken.

On a lighter note, Danny and I went kayaking for the first time last weekend! We also spent two nights tent-camping in a Texas state park. It was so relaxing .. the kids were away at camp, so it was just the two of us. A much needed break from it all. We found that we actually do still like each other!(ha) which is sometimes questionable when our life with 3 active kids is so hectic, stressful, and hurried.

Thanks for reading ... could use some prayers for good test results and a peaceful heart and mind.

Kim

Dealing with reoccurence...

2010-04-25T19:44:00.003-05:00

Brenda,

You have so much courage. We wish you a speedy recovery to your recent surgery. Thank you for sharing your story with us. Your testimony will save lives.

Amy

I was told back in 2002 that I had breast cancer (ductal) and had a lumpectomy done at that time. This was followed by mamo's every 3 months for a year. Then they told me that all was fine and I should have a mamo done once a year. Well this year In February 2010 I found a lump in my left breast and went in for a mamo, this lead to a digital mamo followed by a surgical bio. After all of this they said my cancer was back. I was told I could do nothing and wait it out or I could have a total bilateral mastectomy. And put an end to this cancer business. So on March 24th, I had both of my breast removed. My path report stated that in fact I had ductal cancer in both breast not just the left side. I feel very lucky! Now I must make the choice or rather to have reconstructive surgery or not. I'm still healing from my surgery but have to say I'm glad that my fight has been won.

Thanks,
Brenda

My hero, My mother

2010-04-23T14:23:00.003-05:00

Jessica,

It is so hard to see people we love go through cancer. You are an amazing woman who made many sacrifices for your mom. You have a servant's heart. God is working through you.

Amy

My name is Jessica,

My mother and hero was a cancer survivor. It was the hardest thing I ever went through in my life. Even though I didn't personally didn't have breast cancer I felt as if I did because of how much I loved here, I love her so much I would have took this horrible cancer that is killing and putting people through hell into me so she wouldn't have had to go through that torture. Every day I saw the most important person in my life getting sicker, weaker, and less hopeful. I actually even got divorced because my husband couldn't take me always caring for my mother so I eventually moved in with her so I couldn't take care of her full-time. My job even had to let me go. but none of all that mattered to me. All I cared about was the life of my mother and I was determined to get her to survive this. I believe if I wasn't there for my mother the way I was she probably would have died. I took her to every doctors appt., I waited on her hand and foot and thankfully she survived it. If I had to go through that all again I would in a heart beat. As long as I had her I was happy and grateful. Nobody means as much to me in my life as she does. So to everyone who knows someone with breast cancer I highly advise you to do your best to help them and give them the hope I gave my mother. She still to this day tells everyone I saved her life. I never let her give up hope. I hope my story inspires those who are in mine or similar situations.
All it takes is positive thinking and having GOD by your side.

Early Detection Does Save Lives

2010-04-23T14:19:00.002-05:00

Sara,

You are living proof that mammograms really do save lives. We wish you many healthy years ahead. May God bless you on your journey and congratualtions on completing your treatments.

Amy

Hello, my name is Sara and I am a breast cancer survivor. On Dec 15, 2009 I was diagnosed with DCIS breast cancer stage 0. I realize I am very blessed. I had my yearly mammogram in Nov of 2009 and then a biopsy. I had my lumpectomy Jan 7, 2010. All went well they removed the cancer and two lymph nodes. I started radiation treatment on Feb 11, 2010 and finished March 31, 2010. I started the tamoxifen pill on April 1, 2010. At the end of radiation is when my breast began to burn. I am a black female and the radiation turned my breast really dark. I'm told the color will come back in time. Through all of this my support group has been great, from the time I told them and now. My job was and still is fantastic. I had just started there in July 2009, but the way they stood by me you would have thought that I had been there for a very long time. I thank God for allowing this to be caught in a timely manner. I thank my daughter for her caring, love and support. I thank my friends old and new for being with me, caring for me and always showing concern for me. Mammograms can and do help save lives.

My Mother's Story

2010-04-23T14:18:00.004-05:00

Kurt,

Thank you for sharing your mother's story with us. It is so interesting to hear about breast cancer from a son's perspective. You have such a deep love for her and the fight against breast cancer.

Amy

My mother is a wonderful woman, shes raised me and my 3 siblings and has been a huge help to my sister in raising my niece. She cooks she cleans, and shes worked herself to the bone since she came to this country from Portugal thirty years ago. Despite all she does for my family and others, so much goes wrong. From a bad gal bladder too high blood pressure and numerous other health conditions, my moms been through a lot. But late last spring, she started her trial through something scarier then anything 50 years of life could throw at her; breast cancer. I overheard my mom crying as she walked through the door coming home from the hospital. I almost never see her cry, she's tough. I didn't have to ask her why she was crying, I already knew. It took a while for what was really happening to hit me. Because though of course scary to hear at first, I realize I am lucky. A mammogram found cancerous cells developing. They found it so early that it hadn't had enough time to develop into the stealer of life that breast cancer is. My mother had surgery to remove the cells, and then a few months of radiation, and then it was over. This breast cancer which I hear about everyday, this malevolent force that has taken the lives of so many wives, daughters, mothers and aunts, had spared my mother so quickly. It hit me when it was all over months and months after, and I cried myself to sleep. I was a fifteen year old boy at the time. I listened to Metallica and i thought I was the baddest and coolest guy around, but I cried, and I cried and cried. I cried because I thought "What if I wasn't so lucky to have a mother that survived breast cancer?, What if this luck wasn't there? What would I have done?". I couldn't answer those questions and I still can't, because no one can know what it is to lose their mother until it happens. As much as I cried at the thought of losing her, those tears paled in comparison to the tears that I would have shed if i really did. I love my mother, and I hate cancer. I hate cancer for the emotional pain it caused my mother and for the pain it has caused to all those who weren't as lucky as I. I do as much as I can to help increase awareness of breast cancer because I want what happened to my mom to happy to every person who has cancer, find it early, and do away with it. I want people to know that cancer is not all powerful, it can be beat, do NOT let it own your life.My mother didn't and she's still here. I am thankful for that everyday of my life and from time to time I cry tears of joy because she is still with me. The pain of losing a parent at a young age is a horrible one. So do self examinations regularly, especially if you have a family history of any type of cancer, and don't skimp out on doctor appointments. Do not fear cancer, make cancer fear the joint movement of a million bodies working against it in unison. For one day, though many doubt, I do not doubt, that cancer, will be gone from this earth.

Strength in the family

2010-04-23T14:15:00.005-05:00

Keri,

Your family shows such strength and courage. What a blessing that your mother did not have a diagnosis of cancer. You being strong for your family and giving your grandmother,aunt, and cousin support and encouragement is such a blessing. They are fortunate to have you in the family. You are right. We have to be strong for all surivors out there that might need our strength to get them through the day.

Amy

In 2008, my grandma was diagnosed with breast cancer. It was detected very early, so we knew she had a chance. She had a lumpectomy, and they discovered that they didn't get it all. So she went in for another lumpectomy. After that one they discovered once again, that they didn't get it all. They then gave her the option to try another lumpectomy, or to just have a mastectomy of her left breast. It was a long, difficult, decision for her, but she decided to go through with the mastectomy. Her surgery was 14 hours; it was the longest day of my life. It was hard to see all of my family there and just hoping that everything went OK. We got the news that she was OK, and we went back to see her in recovery. She was still waking up from the anesthesia, so she was a little groggy. I was talking to her and she seemed to be aware of what was going on. She then asked her nurse for some crackers and iced tea. She didn't have to go through chemo, or radiation afterwards. To this day, she still tells me that I am the first one she remembers seeing when she woke up from her surgery, and that makes me feel so good. Three months to the day, after my grandma was diagnoses, her daughter was diagnosed with breast cancer. She was about to go through what my grandmother, her mom just went through. My aunt had a lumpectomy, and she also had to have chemo and radiation. She lost all of her hair, so she bought 2 wigs. She was afraid to show us her bald head and she didn't want her little grand babies to see her without hair either. One day we were at my grandma’s house for a visit and my aunt took off her wig, and I just looked at her in awe. She barely had any hair, but she was still as beautiful as ever. I knew that she took that wig off, not because she wanted to, but because she knew her hair was coming back; she was getting better. My cousin just had a breast cancer scare. She hadn't been in for a mammogram in a few years, but now that 2 women of our family had been diagnosed, she decided to go get one. All was clear. About 2 months ago I get a phone call from my dad, he tells me my mom has to go get checked for breast cancer because they found a lump. I am up at school, and my dad told me not to worry, that everything would be fine, but naturally, I was a wreck. That was all I could think about, and I couldn't wait to get home to see her. I went with her to the hospital they day she got re-checked, and they found that it wasn't cancer, it was just a mass and they are going to keep it under close watch. In all of the sadness, and devastating diagnoses in the past year or so, I would just like to say that I am strong. I am strong for my family, my loved ones, and also I am strong for every woman out there. This can come up on you when you least expect it, but if you just have hope, and believe that everything will be OK, then it will. You have to be strong, ALWAYS, because you never know who is watching and who might need a little bit of your strength to get them through the day.

Story of Survival

2010-04-23T14:03:00.002-05:00

Marci,

It sounds like you have so much support. What a true blessing! Cancer really teaches us to appreciate life and live everyday to its fullest. Thank you so much for sharing your story will us.

Amy

Hi, my name is Marci and I am 63 years old. My story started in 2002, two short years after my husband of almost 27 years passed away at the age of 58. I lived in Texas for almost 16 years when my husband died and I hung on there for about two more years before I decided to move to Colorado where several of my sisters lived. Two months after I moved here, I discovered a lump in my left breast and since I had lost a sister to breast cancer in 1992, I immediately knew it was cancer. I went for a mammogram and then a needle biopsy where I was told it was definitely malignant breast cancer. Luckily, after the mastectomy of my left breast, I was told that the cancer was estrogen receptor. My nephew, who is in cancer research, told me that estrogen receptor breast cancer was the most treatable. My surgery was in late October followed by four months of chemo therapy. Of course I lost my hair which didn't really upset me. As long as the chemo was going to get rid of my cancer, hair loss was no big deal. Then two more of my sisters were diagnosed with breast cancer. They were lucky that their breast cancer was in the very early stages and they both had lumpectomies and had radiation therapy every day for nine weeks. When I went back to my regular doctor in Aug of 2003 for a colonoscopy they found cancer in the polyps they removed. When I went to my surgeon for a colon resection, they found that my breast cancer had metastasized to my liver. At that point they put me on Tamoxifen. In November of 2003 my brother was diagnosed with bone and lung cancer. We buried him on Jan 31st of 2004. For the next 5 years and many trips to radiology for CT scans, PET scans and bone scans my cancer stayed hidden then suddenly decided to give me more trouble. It metastasized to my adrenal glands. They actually had trouble deciding if breast cancer was really the kind of cancer they found in one of the two adrenal glands and since they were afraid to wait too long in getting the results of the lab back, they thought the best move was to remove both adrenal glands and in July of 2008 I underwent a double adrenalectomy. That meant a new doctor in my forever future, an endocrinologist to monitor my body with drugs to take the place of my adrenal glands. Luckily for all my doctors that I have a great sense of humor because after it was discovered that it was metastasized breast cancer in both glands and had my oncologist known that, she would not have recommended the surgery but doused me with more chemo. I did undergo more chemo anyway from Oct of that year to Feb of the following year, 2009. More CT and PET scans and things were looking pretty good until Aug of 2009. My cancer had metastasized again to my right kidney and showing up more prevalently in my liver again. It had also grown from 5.2 centimeters to 8.9 centimeters. Though up until this time I had continued to work, my doctors all agreed that it was time for me to go on SS disability. I was getting sick more, more trips to the hospital and I felt that my employer deserved someone who is going to give the job their all and I was unable to do that any longer. I have been on a regular schedule of chemo since that time and it doesn't look like it will end anytime soon. I've been fortunate that I have a very large family and they have been my support group through all of this. My husband and I were never able to have children but coming from a family of ten, I have lots of nieces and nephews who have taken the place of the children I never had. My husbands family have also been a big part of my drive to keep going and not letting the cancer win. Yes, I am bald once again and again it is in the winter months of Northern Colorado. My family, friends and co-workers have commented over the 7 years that I have been fighting this cancer that they are awed by my indomitable spirit and sense of humor. I just knew that I had a mission and that mission was to fight this and take one day at a time. This cancer is going to have to fight harder to get me but I won't let it. In the past, my attitude was, "I got sick by myself, I'll get well by myself." Now, if any little thing doesn't seem normal, off to the doctor I go. I've almost become a hypochondriac. I don't take anything for granted anymore. I especially don't take life for granted. Every day I am thankful that I saw the sun come up. I'm still alive and I plan to stay that way until God says otherwise.

Get Outta the Way

2010-04-08T09:17:00.002-05:00

Heather,

Thank you so much for sharing this story with us. Your mother is very courageous and brave. She is a role model for all of us.

Amy

I am 5’4 and always considered myself a tomboy, trying to keep up with my much taller, older brother. I started my period very early, so it wasn’t long before I started developing breasts as well. It was so frustrating - they just kept growing, doubling in size seemingly overnight. When I would get dressed for third grade - I would cup my hands over them and pull them to the side, sighing, “if only you’d just get outta the way.” Sure, both my sister and I were made fun of for developing before other girls - our brother and his friends tormented us mercilessly. But, shopping for our “training” bras was the worst - there weren’t large enough cup sizes in that section. So, we had to find something in the ladies department. It was too late - there would be no “training” involved.
Through my teenage years, I attained kind of a love-hate relationship with them. I still felt like they were in the way, but had to admit that they filled out a shirt rather nicely. On occasion, I would still push them to the side and mumble under my breath, “if only you’d just get outta the way.”
The first time I had ever heard of breast cancer is when I was quite young. My mother’s Uncle had a mastectomy to remove first one breast and then the other, but he died anyway in the mid-1970s. In my early 20s, my mom and I can created a new sort of bond, with me as her caretaker after she sustained a brain injury and had to regain her independence. We were together day and night and talked about everything under the sun, repeatedly, because she didn’t have the ability anymore to remember beyond a few minutes or hours. With this new closeness and intimacy because I was responsible for bathing and dressing her - we may have talked about body image, but I really don’t remember.
A few years later, the dreaded “C” word of my mom’s generation reared it’s ugly head in our lives. She had regained sufficient independence to live on her own and was responsible for getting herself to her own doctor’s appointments at that point in her life. So, she was by herself when she was told after her annual exam that she had breast cancer. In her typical self-reliant manner, she didn’t tell any of us. I used my key and came to visit her at her house one day when she wasn’t expecting me. I found her in her bedroom, undressed from the waist up, with her well-worn hands cupping her breasts. Her head was bowed, as though to whisper to them and I heard her say, “you WILL get outta my way.” Shocked that she knew my secret wish from my childhood, I felt comfortable asking her why she was saying that to her own body. She shared that she was sick, but that her breasts weren’t going to stand in the way of her growing older.
She fought and won that battle with stage IIIC breast cancer and her breasts did end up getting out of the way. She decided that her body, although sick, was willing to listen to her. So, she developed a “get outta the way” attitude in other aspects of her life. A hill in the middle of a breast cancer awareness walk - “that hill isn’t going to get outta the way - I am going to beat it too.“ She trudged forward. A concerned daughter or doctor telling her to limit her activities, “get outta my way, I’ve got lots more living to do.” And she has, this is year six of her Surviving, Overcoming and Winning against breast cancer.
So, for me - she serves as a role model and inspiration. She is a little older, a lot wiser and has a new and unique way of doing things. She grocery shops by pink label, making meals out of strange combinations of foods bearing the pink ribbon. Most of her exercise is about getting ready for Walk for the Cure, Awareness or Relay and her vacation destinations are to join walks in other cities. Her wardrobe mainly consists of t-shirts from these events and comfortable shoes for going the distance. And she does… so obstacles be warned, “Get Outta The Way!”
Heather

Big week next week!

2010-04-07T21:04:00.002-05:00

It's been a long 3 months waiting for my next round of tests/scans! Next week, I will spend 3 days at MD Anderson. Monday, I'll have my femur issues re-evaluated with a repeat MRI and plain x-ray, then I'll see my orthopedist to get the results and his recommendations for me and my activity level. Tuesday, I'll have my usual slew of tests: bloodwork, bone scan, chest x-ray, and CT of chest, abdomen and pelvis. Thursday I will see Dr. Green to get the results of Tuesday's tests, then I will have my "treatment" (Zometa infusion and Zolodex injection.) Whew!

It turns out that the recent development of stress fracture vs. progression of bone metastasis of/on my left femur has affected me the most since I was first diagnosed with Stage IV cancer in 2006. It took me a while to really GET IT, that I had to SLOW DOWN, and NOT DO ANYTHING that would put any strain on my leg. Okay, no running. I got that right away. So I joined the Y, hoping to take up swimming, planning to get some workouts in doing anything but running. I treadmilled, walking, and regretted it the next day. I went through an orientation on the weight machines. Low weight, not many reps, easy day, but I felt it the next day -- oops, did too much. Surely I could attend my weekly dance class, which is mostly stretching and strengthening exercises. For a few weeks, I did attend and tried to "take it easy" on my left leg. Yet I still had some mild discomfort 1-2 days later. Recently I walked, evidently too briskly, the 2 blocks to my kids' school for a meeting ... and felt it the next day. Finally, in a big DUH realization, I stopped doing any kind of workout (even took a few weeks off from dance class) and I started feeling better, leg-wise. Of course now I'm not fitting into my cute clothes and have gained 5+ pounds ... ugggh!

I've begun dance class again, yet still taking it very very slow. I just this week took a deep water exercise class (that kicked my butt, by the way) and had no problem with my leg afterward. So I think it's showing improvement overall. I am anxiously awaiting the test results of next week. Want to see nothing "light up" the bone scan on my left femur. Want to see a DECREASE in size of the previously enlarged lymph nodes in my chest and the left lung nodule. Want to see the tumor marker levels go DOWN. Don't want to see any more progression of this disease!

If you are reading this, you are obviously at least a little interested in my story. Please say a prayer for me. I would appreciate it. Thanks!

My mom and sister are coming to visit this weekend, and my daughter's 13th birthday party is this weekend. Must stay busy!

My mother is a survivor!

2010-02-22T10:28:00.003-06:00

Andrea,

What a blessing that your mom is doing so well. To have a baby after all of her health issues is a true miracle. What a gift to have a close relationship with your mom. May she have many more years as a survivor.

Amy

My name is Andrea I'm 18 years old ! In 2005 i was in school and couldn't wait to get out because i thought my life was perfect and nothing could go wrong.Well i come out of school and i get into my mother's car and my mother and older sister had on sunglasses and i laughed at them and said they were weird,Come to find out they had sunglasses on ,on a rainy day because that had been crying but i still had no idea why my mom didn't tell me.We got home and everyone was acting weird and sad and i just wanted to know what was going on my mom didn't even cook dinner that night.She wanted to head over to my aunts house to visit so my brother,sister,and I loaded up in the car and went to my mother's sister's house!I went upstairs after we got there to visit with my older cousin we were upstairs chatting i came down stairs to find my aunt sister,and mother alson my aunts few children were crying.So i asked my mom once again what is the matter and she said "I HAVE CANCER".The first thing that came to my head was My mom is gonna die I cried my eyes out that night i asked my mom a million questions she said I'm not going to die i just have to get surgery ,My mom had everyone in our town that we were well acquainted ith preying for her and our family .That was one of the worse days of my life.She only had cancer in on of her breast and the doctor she went to where we live in zanesville ohio said they had got the cancer out after .My mom thought she should go and get a second opinion so she went to ohio state medical center where she came to find out that the cancer had sperd to her second breast she was devastated along with my family.About a week later she went to get her double masectomy my self along with my sister and little brother were very scared especially my little brother because he was so much younger than any of us.We went to columbus with my mom the day of her surgery with our grandparents we (the kids) were dropped off at an aunts house who lived in columbus so that we could stay there while mom ! was in t he hospital getting surgery .The day of surgery after she was in recovery for four hours we waiting around to see her then came to find out we couldn't go in because we were too young we all were very sad and just wanted to see our mother it was such a hard time for all of us.My mo had these tubs connected to her that leaked out blood and i always emtyed them and wrote down how much blood was in them because it was required. My mom had few check ups after the double masectomy and she had to go through chemo for some weeks she was always sick and she started to lose all the hair on her she would just lay in bed at night and comb her hair and it would all just come out.To this day my mom had her hair in a plastic zip lock bag for memories.She would get these dark circles under her eyes and you could tell she was sick .I really realized how much my mother meant to me after the cancer and all the chemo treatments so i knew i had to do what ever it took too keep my mother happy and off of her feet i did anything she asked for because i was appreciative that i still had someone to call mom or mommie:)My mother is a 5 year breast cancer survivor she is a strong woman she even recently had a beautiful baby girl even though she is 40 years old but we didn't even think it was possible but we are glad she is here.I'm just so happy that my mom fought the battle .For anyone who is going through this my words to you is that you should be strong and always think positive.My mother and i went and got breat cancer ribbon tattoos her's is on her wrist and says survivor and mine says hope!I will support breast cancer until the day i die (I LOVE YOU MOM)♥

Have faith...

2010-02-22T10:20:00.002-06:00

Leslie,

Your mom sounds like an amazing woman. She's a great example of perserverance and faith. God is using her for good.

Amy

When I found out that my mother had breast cancer I broke down completely. I didn't know what to think or what to do. I never thought that my mother would ever have breast cancer. My mother is my best friend and I love her with all my heart. I have realized throughout all of this that my mother is a SURVIVOR she is so STRONG and has been the strongest person through out of all this. My mother, it’s so difficult to describe this beautiful person I cannot find the words, but she is truly a gift. I don’t want to question god on why she had to have breast cancer because I know why, he is using her as an instrument. I feel that god did this for a reason, first reason being, for my family to grow stronger together, he wants to show us that at even the most difficult times in our lives we can overcome it together, and because he knows my mother is a fighter, and can show others that they to can be fighters. My mom has always had a GREAT sense of humor and she still has a great sense of humor!!! That keeps me strong and that lets me know that everything is going to be ok. I just want to say one more thing, tonight I talked to my mom and I started crying on the phone and I told her I was scared, and she said, “ Leslie don’t be scared because your doubting the lord, just have FAITH and everything will be ok”. All of sudden a sense of relief rushed over me and I realized if my mom can be strong about this then so can I. So remember, FIGHT, SURVIVE, and most importantly have FAITH!

Leslie

Finding purpose...

2010-02-22T10:10:00.002-06:00

Eleanor finds purpose in being diagnosed with breast cancer. You can be treated and come out on the other side a survivor. You are an inspiration to so many. Thank you for sharing your story.

Amy

I was diagnosed with Breast Cancer in Sept. 2002. The night after my annual mammogram was when I felt the lump. I found the lump on a Monday night and that Friday I had a needle biopsy. The needle biopsy results were negative, but my surgeon suggest that he remove the lump. When he removed the lump the results came back positive for breast cancer. I had 6 cycles of chemo and 6 weeks of radiation therapy. I lost all my hair from the chemo which was very heart breaking. But by the grace of God all my hair is back and I have a clean bill of health. I know that God has a purpose for me here on earth. My purpose it to let other women that have had breast cancer or have breast cancer that you can survive. Breast Cancer does not have to be the end of your life. The Doctor may heal cancer but only God can cure cancer. If you have faith to Believe that God can heal you, you will be healed. I know that I was healed only through the Grace and Mercy of God.

Eleanor
Suitland, Maryland

Breast Cancer & Aspirin ... and reading my radiology reports

2010-02-19T15:36:00.004-06:00

A recent study showed that breast cancer survivors who took an aspirin a day had a lower chance of recurrence, and a lower risk of dying from breast cancer. Here's a link to the study: http://jco.ascopubs.org/cgi/content/abstract/JCO.2009.22.7918v1. The results were so significant that I've bought some baby aspirin and have taken the first of my daily doses. It may sound silly to some, but if there's something as harmless as aspirin that may be helpful in my situation, there's no reason why I shouldn't take it. I've seen some comments on Facebook from people who say that it may just provide a false sense of prevention. But no one's saying that about all the other treatments out there. I've had a mastectomy, chemotherapy, radiation, and Tamoxifen and my cancer still came back. Does that mean that since none of those things cured my cancer forever that I should discount them? No! Reminder: There is no cure for cancer, people! If 100's of women received some sort of cancer preventative effects from taking an aspirin a day, count me in!

In a previous post, I recounted the latest issues with my Stage IV recurrence ("Update on Kim," January 17, 2010.") Usually I request copies of my results (labs, radiology reports, etc.,) but this time, I didn't for some reason. A week or so later, I logged in to mymdanderson, a system where patients can view their health records, get information on their diagnosis, review billing issues, etc. I noticed that my recent CT scans, bone scan, and labs were available for viewing. I viewed. Let's just say I was even more shocked reading them than hearing Dr. Green explain them. The reports sounded MUCH WORSE than what Dr. Green told us. Dr. Green had said that "one" lymph node in my chest had grown; the report used words like "multiple," "progressive metastasis," and "significantly increased." When I told Danny of this, he said "No, she didn't say that it was just one." Perhaps she had described several, but clearly, my mind had stopped processing after the first. It's so good to have someone else there with you when you go to the doctor's office! It's necessary.

Also, Dr. Green said that my tumor marker (CA 27-29) was within the normal range (0-38,) so that was good. She was right that it was in the normal range -- it was 18. BUT, in looking back at (well, studying) all of my previous CA 27-29's, it actually is a little elevated. At my first visit to MD Anderson in 2006, it was 70-something. A month later, 50-something. Three months later, 37. All since then have been below 12! So since early 2007, my level has been holding steady at less than 12. Now it's 18. Very disconcerting, but I keep telling myself that I'm being treated at the best place in the world. Surely my doctor, the head of the breast medical oncology department knows what she's doing! And I am not being sarcastic. Settle down, self! It's just hard, when faced with all of these facts.

April, when my next scans and labs are scheduled, cannot come soon enough! Oh, the worry. Deep breaths, prayer, deep breaths, prayer.

A husband's love...

2010-01-28T10:43:00.002-06:00

Frank,

What a unique perspective Frank. You are a survivor too. I believe that cancer can impact our caregivers sometimes more than ourselves. Thank you for the encouragement that you are providing to all of us.

Amy

Hi my name is Frank, I consider myself a cancer survivor because my wife passed away from Breast Cancer in 2007 after a long 3 yr battle. Every test, needle, treatment, surgery`s, and everything in between i`ve been thru with her. It`s been 2 1/2 yrs now since her passing and it`s been the biggest struggle of my life. We were married for 16 yrs. She wasn`t able to have children, So it`s just me to deal with all the pain. I MISS her dearly. I am a survivor of cancer because i haven`t let it destroy my life. I want to thank you for allowing me to write this. When i`m involved with anything that has to do with cancer, I feel i have a lot to give. I feel each and everyone`s feelings of where their at with fighting their cancer. From the day at the Doctor`s office when they told her she had stage 4 cancer, till the day she passed, I felt every pain and every feeling she had. We were close and I Never want to feel that pain again. God Bless each and everyone with any type of cancer. I know it`s beatable, I`ve seen it in others. So Please don`t ever give up. Because deep in my heart, I feel my wife did give up that last year she was alive. She was in so much pain, she just couldn`t take it anymore. She wanted to go home with the Lord and get rid of all that pain. I know she`s in a better place now. I talk to her all the time. She tells me this thats how i know. God bless you all and Keep up the fight. You CAN beat it. Thank You Frank

There is hope...keep your faith and love your life!

2010-01-28T09:44:00.003-06:00

Amanda,

What a blessing to have your grandmother in your life. She sounds like such a fighter. She gives us all inspiration to fight through our own battles in life. I hope you are able to create many more memories with her.

Amy

Hello my name is Amanda and my Grandmother, Agnes, is truly amazing. She is definitely one of a kind. She is nothing short of a hero in my eyes. Sadly she has had breast cancer ever since I can remember. She has gone through treatments to help her throughout the years. It has been a bumpy road for her however I have never once heard her complain. She lives life as if tomorrow is another day. She always surrounds herself with family which is the best medicine for anything! Unfortunately throughout the years the cancer went into her bones. She got a little weak and wasn’t as strong when she got up to walk but again didn’t stop her from living and loving her life. About three years ago she was admitted into the hospital because she ended up getting sepsis from her immune system being low (for all of you who don’t know this is when bacteria get into your blood stream. The amount of people who pull through sepsis is very low.) She was in the hospital for three months but I can happily say she pulled through it! It was a miracle. Like I said when you have family and faith anything can happen. When I look back it seems like it was one thing after another for her yet she always pulled through. She actually inspired me in my own life to fight through some of my battles. When things get tough I just think about what she has been through and how she fought through it. My words to anyone fighting this battle with breast cancer is, I know it is tough but never give up and always fight through it. Surround yourself with the people that love you and have a little faith. To put my story in perspective I am almost 25 years old. My grandmother is 67 years old and I am truly happy to have her around. I gave birth to my son November 18th of 2008. She was so happy to be able to help birth him and told me it was the highlight of her life! Without faith none of this could have been possible. There is hope you just have to keep your faith and keep love in your life.

Amanda

A Heroine for Young Eyes

2010-01-28T09:31:00.004-06:00

Thank you Colleen for sharing this story about a woman you looked up to and admired. This story is so beautifully written.

Amy

A Heroine for Young Eyes
By Colleen

I can't remember how my mother became friends with Deanne. Our family was from a very rural area in southern Ohio and we would always pass her farm when we were going to town for groceries. Our homestead, as I like to call it, was where I learned that work, especially work done for the joyous benefit of my mother, was the equivalent of gold. To both my brother and I it would come to mean fast money and an extra night out while in high school, but when we were young, all we wanted was the
reward of going to Deanne's house to see her abnormal edition to the community--her buffalo. She was, the only woman within 600 miles who owned the environmentally and culturally estranged creatures. Rural Ohio being what it is--hilly, but yet dryly uneventful, buffalo were to me as an unexpected paycheck is to me now.

Deanne was tall blonde with a long chin and a wide set grin--of which she didn't often show all of her teeth through unless she was tossing her head back in a fit of laughter. Strangely, that same tugging grin remained stable and unwavering in the afternoon summer sunshine when she'd hire me out to clean her house and listen to the Soft Rock station Warm 98.5 out of Cincinnati.

Her husband had gone, along with the buffalo. The house had quickly become more than what she could keep up with. The chemotherapy for her stage rising breast cancer was also to blame.

My mom was the kind of woman that would answer any of my questions. Periods, birthing, boys, “manhood,” tampons, why to ALWAYS knock before coming in her and daddy’s bedroom…the works. But mom never told me much about Deanne's treatments, how she was feeling or if she was able to feel at all. I would just go over to her house when she wanted me—for cleaning, for her sun dried iced tea and to walk through the tall white barn with a surreal vision of bison standing outside its corners. This
woman, this serge of joy, was a light of a whole other dimension in both mine and my brother’s life. That dimension was a dimension of comedy, of jokes and bear hugs and everything that encompassed her.

Deanne came to visit us one day in our home. She came with only one
breast, not the normal two.I remember being so taken back, shocked and embarrassed. My young mind thought how can she stand to see herself so exposed? I tried not to
stare. There she sat in front of my family, forgetting that a piece of her was missing—as a petal, plucked and stolen away. There in our home…in front of my family she sat.

But she didn’t just sit. She was Deanne. She jokingly smacked her leg and threatened my brother’s bad health if he drank too much Mt. Dew. She was her. Fervent in light and life and more of a woman to me than any other I have seen, she was holding more dignity in a one breasted body than some people will with implants. She was the essence of heroine not through glitz, glamour or fame but through the love she was sharing and the light she saw in herself and was transferring to my family.

Since then my materialistic thriving culture has tried to replace my idea of heroine. They never will succeed. It took a woman to understand her own beauty to help me also appreciate mine.

Update from Kim

2010-01-17T13:21:00.003-06:00

Shortly before Christmas, a friend in my cancer group lost her battle with breast cancer. She was 36, with a husband and two young boys.

Around the same time, a good friend (37 years old who used to work at The Pink Ribbon Shop) discovered a lump that was found to be invasive ductal carcinoma. Pathology showed it to be "triple negative," and she subsequently learned that it had spread to some lymph nodes and that she was BRCA-1 positive. Thankfully she is being seen at MD Anderson. She will start chemotherapy, and also take part in a clinical trial, in a couple of weeks. After chemo, she will start radiation and will eventually have a bilateral mastectomy.

In November, after a 5K run I did with my daughter, I had severe pain in my left hip to where I could hardly bear weight on that side. Of course I worried, since that was the side that I had bone metastasis to the femur. I called my doctor, who said it sounded like inflammation, and told me to take 800mg of ibuprofen, 3 times a day, around the clock for one week. I did, and felt MUCH better! This put my mind at ease ... in 2006, when I was first diagnosed with stage IV cancer, the left leg pain I had wasn't relieved with anything. Clearly, this latest pain was not related to cancer, it was simply related to my pushing myself hard running. Besides, it was my hip and not my femur.

Of course when I could hardly walk, I took some time off of my running. After getting such great results from the ibuprofen, I attempted to slowly ease back into it. But the hip pain continued, off and on, and it sometimes radiated down into the femur. I decided it would be best to completely stop running and see what happened. I would wait for my upcoming test results before resuming my running. For two months, I did no running. I felt fine. I thought that surely whatever inflammatory thing I had going on was now healed up. The week before my 6-month scans, I went for a short run, and the pain in the hip and thigh came back, right away, after that one easy run. It now seemed to be mostly in the thigh and not so much the hip. I was truly worried now. It just didn't seem right.

Still, I am well aware of the fact that I am a worrier. This is normal and understandable for cancer patients! Once you have had cancer, especially stage IV, your mind tends to think that any little ache and pain is the cancer rearing its ugly head again. My husband, Danny, always tells me how much his joints ache in the morning or after not a lot of activity. It's a fact that we are getting older, and these things happen. He tries to comfort me with this, and I try to find a balance between worrying to death about cancer and graciously accepting the changes that come with aging. Dr. Green has explained to me that due to the metastasis to the left femur, it will sometimes ache or hurt, because it's been injured. Like an old sports injury, it will never be as good as new. Additionally, some of my scans and x-rays have showed slight degenerative changes associated with simply growing older.

The other thing I thought of was that Dr. Green had recently changed my Zometa (for the bones) infusion from monthly to every three months. What if that had something to do with this? I had trained in 2008 for the January 09 half-marathon with no problems whatsoever. I was training for the 2010 half-marathon in the same manner, so I was looking for a reason why I was having problems this time around.

The time came for me to have my full day of labs, x-rays, bone scan, and CT scans. The next day was my appointment with Dr. Green to get the test results. I informed Dr. Green's nurse (whom I see for a brief interview before each appointment with the doctor) of the issue and explained as best I could the progression of it all. She asked a lot of questions and took a lot of notes.

Dr. Green came in with her usual chipper self. She began to explain that the bone scan "lit up" on the left femur, just like it did in 2006. Of course, this was not what we wanted to hear! She recommended that I have a plain x-ray of the left femur to investigate it further.

But that wasn't all! She also said that a nodule at the base of my left lung had shown slow growth over the last few CT scans, as had a lymph node deep in my chest. This just blew me away. I guess deep down I was expecting to hear that everything was fine, and I was just having a little leg pain because of running. This was obviously not the case!

Dr. Green recommended that we switch my oral medication from Femara to Aromasin. The Zolodex and Zometa will remain the same. She has always told me that the day would come when the Femara would no longer work. It wasn't a matter of if, it was a matter of when. Cancer is not curable. Already, my 3 1/2 years on Femara had far surpassed the "average time to treatment failure" of 9 months! Ok the 9 months was what I read online, but going 3 1/2 years certainly made me feel good after reading that! Dr. Green has also told us that when a patient responds well to one anti-hormone therapy, they generally respond well to others, of which there are several. So, on to drug #2!! We pray that this one works even longer than 3 1/2 years!

"They are your boobs...feel them"

2009-12-08T12:10:00.002-06:00

Susan,

Your story about your young daughter reminds us to not only look at the risk factors for breast cancer, but listen to our own bodies. Breast cancer does not discriminate. Whatever the age, family history, etc. anyone can get this disease. Your daughter sounds like a fighter! What a wonderful example for your whole family.

Amy

I never dreamed, in my worst nightmares, that I nor my family would face breast cancer. Then, last summer (2008) my oldest daughter, then 25, told me she had found a lump in one of her breasts. She, of course, told her gynocologist, who said not to worry; she was young, no family history of breast cancer, and she was healthy, had weaned her 1 1/2 year old son recently, and had no risk-factors to be concerned about. Her Dr. told her to "just keep an eye on it" and not worry. Fortunately, my daughter, Ashley, changed doctors within the next month. Her new doctor didn't take the lump, tiny, smaller than a pea, lightly, and sent her directly to the breast center at a local hospital. Ashley called me, concerned, because they did a mammogram and wouldn't let her leave without a biopsy. We both thought they were just being overly precautious.

The breast center called her with the biopsy results when she was at home, alone with her son. She called me immediately, and, of course, the connection was breaking up. I prayed the tears I heard were tears of relief, but all I heard was "its cancer mom". I prayed for the 'not' in there, but it was true. Ashley is the strongest woman I know. She took the bull by the horns, researched, and came up with a game plan. I still couldn't breathe days later when we were walking with her husband and son one evening. She told me, "Mom, this is not a time to be sad. We have to play the hand we have been dealt and win all the chips on the table." I reminded her that, even at 25, she is my baby and I should be allowed to hurt for her. I still hurt for her; however, I revel in her strength.

Ashley's bilateral mastectomy was difficult for me and the rest of our family. When the surgeon told us that the cancer had spread to her sentinal lymph node, her husband and I were desparate to go talk with her; however, the hospital rules said we couldn't. As soon as we were allowed to see her, we ran into the recovery area, expecting to find her devistated. She was smiling, chewing on ice, and happy! Fortunately, the cancer had spread no farther, as we learned days later.

Chemo, shaving her hair (she was awesome, wouldn't even wear her wig or bandanas unless it was cold) then radiation have been very hard on her and me helping her through it. She was put into chemical menopause and will be there for another 4 years. It is so eerie to have your daughter having more menopausal symptoms than I do; I'm 50, she's 26...

Ashely has an awesome husband and even more fantastic son! He looks at a pink ribbon and says "Breast cancer....get out!!" Ashley developed lymphodemia and is dealing with that the way I've come to expect. I truly admire her and anyone else who is dealing with this disease.

As Ashley says.. "They are your boobs.. feel them" Monthly self-breast exams saved her life; but she knows how to fight like a girl!!

Susan

Helping other women...

2009-12-08T11:58:00.002-06:00

Julie,

How selfless of you to participate in a clinical trial to help other women, even though you did not need any treatments after your surgery! I applaud you! Together we can find a cure!

Amy

Good Morning, I am a 37 year old mother of 3, who was recently diagnosed with multi-focal breast cancer in March of 09. I had been having pain in both breast that was unusual for me, this started in Dec. of 08 and went for my annual in Feb. of 09. The nurse felt for lumps and found nothing but still sent me for a mammogram. I received a call a few days after the mammo with news that they had found a spot close to the chest wall and was to see a surgeon about a biopsy. When I went to see the surgeon she could not feel any lumps either and went ahead with the biopsy. The biopsy came back positive, and we proceeded with a lumpectomy. The lumpectomy came back with unclear margins and I was scheduled for a breast MRI. After the MRI, the surgeon told me that the opposite side would need to be biopsied as well because of a suspicious area. To avoid as much emotional stress as possible I went ahead and decided to have a bilateral mastectomy. This has been the biggest emotional roller coaster that I have ever been on. Just finding out that I had cancer was enough to cripple me emotionally, but I am at the point now that my oncologist is offering participation in a clinical trail. I have found out that I do not have to have chemo, but I have made to agonizing decision to take part in the trial because of my age and because I could help women in the future make these decisions. I have had one treatment and I am already wondering what I have got myself into, but I have to finish the course of treatment to help future generations of women. My heart goes out to any woman facing breast cancer, If we could only find a cure.

Julie

"You'll be fine...You are my sister..."

2009-12-08T11:48:00.002-06:00

Karel,

What a story of hope! Your answer to your prayers was such a blessing. Thank you for sharing how God has blessed you in leadership towards creating more awareness for breast cancer.

Amy

FIVE WORDS TURNED MY LIFE UPSIDE DOWN.

ON AUGUST 8, 2005, I WAS TOLD " YOU HAVE MALIGNANT BREAST CANCER" .

THOSE WORDS TOSSED ME INTO A DARK PIT OF DESPAIR AND HOPELESSNESS.

I TALKED WITH GOD ABOUT MY DILEMMA, AND HE ANSWERED MY PRAYERS IMMEDIATELY... PROVIDING ME WITH A GREAT SURGEON, AND A FANTASTIC ONCOLOGIST.

MY ONCOLOGIST EXPLAINED THE CHEMOTHERAPY TREATMENTS, AND THEN SAID SOMETHING THAT GAVE ME HOPE.

HE TOLD ME THAT "YOU WILL BE FINE".... "YOU ARE MY 'SISTER', AND I WILL TAKE CARE OF YOU".

I ENDURED 4 ROUNDS OF CHEMO... A MASTECTOMY... 4 MORE ROUNDS OF CHEMO... 33 RADIATION TREATMENTS.... THE TYPICAL HAIR LOSS, AND REACTION TO THE DRUGS.

MY STORY AIRED ON THE TELEVISION STATION WHERE I WORK,SIX MONTHS AFTER MY DIAGNOSIS.

THE NEXT DAY AS I WAS HEADING TO WORK I NOTICED A CHURCH. ON ITS ROOF IS A WHITE CROSS, AND ON THIS PARTICULAR DAY THERE WERE CLOUDS FORMING. JUST ABOVE THE CROSS WAS A CLOUD IN THE SHAPE OF A HEART, THE KIND YOU WOULD SEE ON VALENTINE'S DAY. IT WAS A SIGN FROM GOD THAT HE LOVED ME. IT WAS ALSO A PROMISE THAT HE WOULD ALWAYS TAKE CARE OF ME.

HE'S DONE THAT, AND CONTINUES TO BLESS MY LIFE EVERY DAY.

IN 2006, I WAS THE HONORARY CHAIRWOMAN FOR THE CATTLE BARON'S GALA.

IN 2007, I WAS THE HONORARY CHAIRWOMAN FOR THE SUSAN G. KOMEN RACE FOR THE CURE.

IN 2008, I WAS THE HONORARY CHAIRWOMAN FOR THE AMERICAN CANCER SOCIETY'S RELAY FOR LIFE.

AND IN 2010, I WILL SERVE AS CHAIRWOMAN FOR THE AMERICAN CANCER SOCIETY'S RELAY FOR LIFE IN WICHITA FALLS.

KAREL

My sister, my family...

2009-12-08T11:37:00.002-06:00

So glad to hear that your sister is doing well! Knowing your family history for breast cancer is so important! Self exams and yearly mammograms are so critical. Early detection is the best prevention!

> My sister Linda was diagnosed June 15th, 2004, on her 36th wedding
> anniversary with breast cancer. Not exactly the anniversary present she
> expected. Her actual diagnose was "high risk infiltrating lobular
> carcinoma of the left breast". She underwent a modified radical mastectomy
> shortly after her diagnosis, the primary tumor was 4.5 cm and the lymph
> nodes were negative. She received 4 cycles of dose dense AC followed by 4
> cycles of dose dense Taxol which she completed in October of that year.
> She was placed of adjuvant Arimidex, but could not tolerate it, so was
> then placed on Aromasin.
> Linda chose to have an implant put in as soon as her body could tolerate
> it, in the fall of 2005 she underwent surgery for adhesion's on the
> reconstructed breast. Thus far she is doing great, she just celebrated her
> 5 year anniversary of being in remission. The fact that she was diagnosed
> was quite a shock, our maternal grandmother had breast cancer in her 70's
> and we thought that was the end of breast cancer in our family. Then our
> cousin Bev, also on the maternal side of the family was diagnosed with
> breast cancer. Sadly she passed away at the age of 46, it had spread too
> far. We were terrified of Linda's outcome , the odds did not look good.
> But thus far she is doing great and I have my mammogram every year always
> praying that I won't receive the same dreaded news.

Keep a good attitude and don't be afraid...

2009-12-08T11:27:00.004-06:00

Joyce,

Congratulations on your survivorship! Thank you for sharing your story with us. Attitude does play a big part on how we handle the cancer experience. I hope also that someday people will ask..."What is cancer?"

Amy

Hello, my name is Joyce and in October of this year I was a 5 year survivor.

On October 20, 2004 (my birthday) I was in the hospital biopsy room with the test from hell. (pardon the language, pls).I had had my mammo earlier. If anyone has never seen the table you lay on, when I walked in I said "thanks for the complement guys!!" The hole in that table was a 100 Double D After it was done, nosey me wanted to see what he took. After being called nosey by the sweetest guy, I saw these things that I told him looked like spaghetti with zits. Also asked him, any hints you want to give me - he said no, but we'll call you soon.

The next day, while at work, my phone rang. It was my sweet biopsy guy...he said "I hate to tell you this", and I interrupted (which I normally do) and said "well say goodby and hang up.) He said he was sorry but I had breast cancer. Heck of a b'day present, huh? ( I had just had a "touch and feel" by my work NP and nothing was found). I was floored, but it was behind my nipple - called a shadow. He said he was going to call my OBGYN doctor who's a wonderful guy. It seemed just as I hung up the phone, the Doctor called . He said, "Joyce, I'm really sorry; what can i do for you?" I told him 2 things. 1) to find someone as kind as you- 2) someone who knew what he was doing. He said," I can do that - I'll get back with you."

Well, I called my boss and when I heard his voice, you guessed it - TEARS. Told him I was going home. His knowing what I had been waited for, he wanted me to go to medical. Medical? I wasn't sick, I wanted to go home. He said can you drive? I wonder why people think when ones cries they can't drive. You drive in the rain, right? He said go, but be careful. I called my husband who was on his way to my sister-in-laws to get some dishes for my daughter. He said to go home, that he would come home. I said no, I want to see Anne. She was in stage 4 of ovarian cancer and she was my rock. I learned a lot about chemo, radiation, being sick, all that wonderful stuff from her. I told him to act natural and we would tell her later, I just wanted to sit beside her. A fighter from the get go, she was something else. When we arrived, she was shocked to see me in the middle of a work day. "What are you doing here?" she asks. I said "I'm off for half a day and thought I'd come with Billy and visit with you." So we chatted for a while, I kissed her and said "see ya later." The following Monday I told her and she said not to worry we will fight this together. I said "I know, that's why I came to see you -to pull a little strength from you - hope not to much." She said "you didn't." We said our love ya's and hung up.

I think at that time, the hardest thing to do was to tell my girls. We were scheduled to go to Charlottesville, VA that weekend to see my youngest. Told Billy we would still go - I wasn't dead yet and treat is as any other visit and tell her at some point in time. When I arrived home, there was a call from my GYN guy. I had been scheduled to see my surgeon on Nov. 4th. Well, while visiting her, she was talking about Thanksgiving, etc. and I said that we needed to talk. I said to let's drink a glass of wine before we go to dinner. She looked at her dad and said, uh oh, she's gone crazy. We laughed and then told her. My heart broke for her, but I told her, don't worry, I'm going to do just fine - now let's go eat!! She's a very caring person and I knew she would be ok. We had a good weekend and left the next morning to go to Richmond to tell my oldest daughter. She listened, but didn't know what to say. I told her she wasn't going to get rid of me that easily.

Going on with the daily things in life, my sister-in-law had to go to the hospital. We had talked over the weekend and she was going to have a little surgery. She told me good luck seeing my doctor on the 4th. I told her, I will, if you can do it, so can I. Anne died on the 3rd and visitation was the 4th - the day of my surgeon's appt. Oh well, I said to myself, I'll do this with her in my heart. At the appointment, the first person I met was his NP. One of the most caring, professional person I had ever met. She said,"Joyce we will take care of you, don't give up." Being the way I am, I told her let's get this over. 1st - I'm not in denial - they told me I already have cancer. 2nd - I'm not angry - the cancer will win if I get mad. 3rd - I've already had my pity party of crying for 15mins. 4th - let's meet my Dr. and get going. I guess she thought I was going to be one of her crazy patients!! During November, I was scheduled for a lumpectomy .He found cancer in 2 lymph nodes and wanted to do another to see if there were more of those goobers in there. I said cut the darn thing off, it's so little, i won't miss it!! I'll just lean to the right more !! He was really shocked as I think that's what he wanted to do anyway. Surgery was scheduled for January 2nd 2005. It's a 24 hour stay time - insurance ya know. Of all places to put me, i was on the newborn floor. My youngest daughter called and when we told her what floor i was on, she said "are you going to try to nurse?" What a funny family I have. Here is my schedule for the year:

1. Dr. Desch at the Virginia Cancer Institute in Richmond, VA. - my onocologist. Upon arriving there on my appointment day, I met him (a good looking guy - phew) and his nurses. They showed me around and my 1st chemo treatment was scheduled for Feb. 14th -Valentines Day. (do you see a pattern here? b'day, valentines day - brother, i couldn't wait to see what was going to happen at Easter-!!) I elected to go into the Clinical trials to see if maybe i could help someone. I would do chemo one day, wait 2 wks and go back again. I took 2 different kinds...the 1st 4 treatments were one kind...the last 4 treatments were a different
one. They were trying to see if these two would work together. The nurses were angels...and as I looked around the room, I realized that even with my cancer I was one blessed person. I wanted to take some of these people in my arms and just hold them, to make them not to give up, to keep trying.

2. The hair loss....oh yes.....it happens...my hair was my best asset. Thick, could do anything i wanted to with it...BUT, in the shower, those darn little strands would wrap themselves around my fingers and just laugh. Personally, I didn't think it was funny. (i do have a good imagination!!) Told my husband my hair had to go. He thought I would probably have a breakdown, so here he comes in with a big pot of yellow daises, a NEW SET OF CLIPPERS and the cape. I said you've been waiting for this haven't you? He would clip, stop - are you ok? yes dear - clip - stop - are you ok? I said if you don't finish what you're doing, i'm going to clip you:) Then the little hair pieces that were left, stuck in my pillow, so the next thing to do was shave.
One of my friends told me that I was the only person she knew who could make cancer a shopping experience...so many hats - so much fun to wear..one makes the best out of anything, right ladies?

3. The cardboard taste. YUK, who wanted to eat when it tasted like cardboard? I had a list of tv commercials of food that i wanted to eat after i could taste again. (we hit red lobster about 4 times!)

Let me tell you here, I was not sick at all. I don't know if it was the medicine they gave me(which i'm sure was the biggest part of it) or if I was being blessed for something i didn't know about.

On my last visit with Dr. Desch, he told me I was being scheduled for radiation. I told him no way, that he said I might have to take it, not would....He said, "I want to keep you living for a long time". He was such a doll I couldn't say no. I was wearing a big red hat and took a picture of him with it on. I put it in a frame and gave it to his nurse when I went for a follow-up and met my new onocologist. Dr. Desch had left VCI to go into more clinical and testing stages, and was killed in a plane while he was flying to Albermarle airport near Charlottesville. God took a special person from us that day and I'm glad that he was my doctor. I can still see that smile and that red hat!!

Radiation came next. I was able to do that closer to home in Petersburg. Those nurses were a hoot - one was a Braves groupie (Richmond and Atlanta) and the other would play baseball or soccer (broke her ankle). It took me longer to get there than the treatment took. That lasted for 35 days. The doctor there was a good guy. We still have a bet going on - he said 1 out of 3 women with breast removal usually end up with lymphodema. I told him "I not going to be the 1". Guess what, I'm winning!!!!

To make the end of my treatments special - I was given a really big gift by my youngest daughter - I was told I was going to be a grandma !!!!! Now what else did I need? Was I kept around for that or is something else in my future? Who knows, but I'll roll with it no matter what.

So you see? My life with cancer so far has been easy. People who cared, doctors who knew what they were doing with kindness, meds that worked (I still hope), a God that has protected me (even though I'm not as strong a Christian as I should be), a family that suprised me with more love that I knew existed and most of all- a good attitude. I refuse to let it win.

I see and talk to people who are not as lucky as I, and the guilt comes in. Why me so blessed and not them? But I try now to pay it forward. I heard a lady at VCI tell the receptionist a few months back that she was scared to death - this was her first treatment. I was really unsure what to do-would she get mad if i said something? But, with me, being me - after she sat down, I walked over to her and asked her did I hear her say that she was afraid? She said yes she was. I said as I pointed at my head - it's all in here....keep a good attitude and don't be afraid - they will take care of you. She said thank you so much. Told her I'd try to come back there after my appointment and see how she was doing. I went looking for her and her fella was with her - she pointed to me and said there's that lady I was telling you about. A total stranger made me feel special and not to be afraid - it made my day. I said, "No mam'm, you made mine. Never give up". We talk now on occasion and she's doing fine.

So, that's my story. I know it's too long, but it made me feel good to tell you about it - that i was still around to tell you about it. I've done a Relay for Life in Petersburg once and the Komen for the Cure in Richmond. So many people and that's just around our area. I like to type in little letters and my spelling stinks, but that's a little thing to care about.

I hope someday, people will ask "What's Cancer?". Maybe not in my lifetime, but one day.................

To those who are dealing with cancer - i will place you in my heart, even thought we've not met in real life, but know what it's all about.

To the survivors - remember that you are blessed and never take anything for granted - enjoy the good, deal with what ever happens with a smile

and most of all - it's the attitude ! bless all of you

--------------------------------------------------------------------------------

Proud Granddaughter

2009-12-01T11:17:00.002-06:00

Kendra,

Your grandmother sounds like a fighter. She's a wonderful example for you and your family. Cancer does seem to change lives and bring us closer together.

God bless,
Amy

Hi,
My Name is Kendra, I am 22 years old.. Im writing this to you to tell you about my grandmother.. a couple of years ago I was told by my grandmother that she had Breast Cancer, at the time the doctors thought the best thing to do was Remove the breast, Thinking that it would be the last we would hear of the cancer we went on with life. Little did we know a couple of months later I got another phone call from my grandmother saying the cancer was back and had spread more. This time the doctors took the other breast and my grandmother did Chemo. After doing all this we thought everything was going to be back to normal. My grandmother went threw alot with the second round and I am so proud of her. Then last year I was ready for the call i got. My Mother and grandmother told me that my Grandma had Cancer yet again, This time in her Lung area. I didnt think I could take anymore. But till this day she is fighting and Im SO PROUD of her. I wouldnt trade anything in the world for what my family has been threw it has bought us together in so many ways. Anyway this is my story
Thanks

My mastectomies saved my life

2009-12-01T11:03:00.001-06:00

This story speaks for itself.

My name is Jeri and I am a 2-time breast cancer survivor. My experience with DCIS starts with having to tell all my friends and family about it. I asked so many questions of my doctors and investigated as much as I could so that when the time came to share with everyone, I would have all the answers. Of course, you never have all the answers. With my friends and family at my side, I had 2 lumpectomys only to still not have a clear margin. My questions not answered. Then after my bilateral MRI, all my questions were still not answered. With a 5% chance of there still being more cancer, I decided to have the masectomy, which in my case may have saved my life. After the surgery, my doctor told me that I did the right thing because they found more cancer. I took it in stride and was out of the hospital after only 2 days. I wanted to get home and get on with my life. My friends and family were there for me to make it through this rough time. Then, 2 years later, another diagnosis of breast cancer in the other breast. No questions asked this time. I had another masectomy because I didn't want to ask any more questions. I wanted to control of my destiny and I would not let this cancer take the best of me. Now, 2 years later, I have helped so many of my friends and their firiends with my knowledge and experience and have showed them that we cannot be afraid. we must take control and beat this thing and not let it get the best of us. Knowledge is power and I pass it on in the hopes that it will help someone make the decision that is best for them.
Sincerly, Jeri

We're allowed to have pity parties!!!

2009-12-01T10:10:00.002-06:00

Writing is therapeutic in the journey with cancer. We all have good days and bad days. Pity parties are allowed. This is not an easy disease to fight. We appreciate your authenticity in your story to us.

Amy

Hello....
I was recently diagnosed with breast cancer & had a double mastectomy on September 1st. The pain of reconstruction is above anything I have imagined. I am going through the weekly injections or as I refer to it as my "fill ur up" injections and will be starting my Chemo on Wednesday and then Radiation treatments. Each day I wake up thinking this was just a horrible dream that went on and on.
Acceptance? Denial? Yep, that is my daily battle. Face this full boar, or cry all day. Yep, that has been happening also. Happy one minute that this has been diagnosed early yet, why why why me?? The different feelings are amazing...the other day I wanted to pick up everything in my house and throw it...and I mean throw it through every and all windows in my house.
In the last 18 months I have had a series of bad luck. First of all, I had 3 back surgeries within a year, during that time, our house was burglarized (my brand new car stolen & totaled) and all the priceless family jewelry gone! Then I lost my job & medical insurance. No cobra because in Arizona if you have less than 25 employees you are not required to have it. Seeking private insurance with back problems is disastrous to say the least. I now have insurance with the monthly payment of $1,486.00 and as of November 1st it kicks up to over $1,700. And during all this, I quit smoking. My surgeon instructed me to do so ~ it was hindering my back fusing back together. I feel like a saint here on earth..no smoking and don't drink...okay I do, Coke-a-holic. Now the day the doctors tell me I cannot have my can of Coke every day is when I will go postal!
And then the icing on cake breast cancer. Surely I must be living under the black cloud.
Oh yes, I have all the support, love, understanding and patience from all my family and friends. This is the time in ones life that you know who you can count on and who really is a friend. I have had people call, write, come to the house, send me cards & gifts, bringing me home made soups, ladies walking for me at the cancer walks, offerings of assistance to take me to doctor appointments or just to get out of the house. I am just blown away. With all the support that has been offered to me, why oh why do I feel so completely alone!! The feeling of dispare (did I spell that correctly??) overwhelms me at times...like late at night..when all you have is your thoughts. The silence of it all!
I am sitting here at my very own Pity Party. Saw your ad encouraging women to write to you with their story. My story sucks and frankly I think I need a violin and a box of Kleenex to make this story even more depressing. But I know, that there are other stories that are worse than mine and in fact my story is more like a "big deal" or a "so" type of tale, but nevertheless, I do feel better writing to you. Ooops, did I go over the amount of words that you had asked for?? Sorry if I did, but I have a lot to say and obviously I am not shy about sharing it. I like to write, people seem to think I have a way of saying things even though bad, seem comical.
I do appreciate you taking the time to read this; but I hope it did not bore you. It has been very therapeutic for me. Thank you for letting me vent....it does make me feel better.
You are doing a wonderful job ~ please continue to do so.
B. A.

A Unique Perspective

2009-12-01T09:52:00.003-06:00

Cathie,

It is so interesting to hear a cancer diagnosis from your perspective being in the medical field. It is so good to hear that you are doing so well. May you have many years as a survivor ahead of you.

Amy

I am a 9 year breast cancer survivor. I was diagnosed at the age of 42, from a routine mammogram. For some reason, I had skipped a year and missed having my mammogram at age 41. I now wonder what that missed mammogram would have shown. I had a non-palpable mass, located way back near the chest wall. Subsequent biopsy showed that it was an early Stage II. I underwent a lumpectomy and had to have all my left axillary lymph nodes removed, as my sentinel node showed 4 positive nodes.

I work as a Radiologic technologist, seeing and helping treat patients with breast, and other cancers, every day. Never in my wildest dreams did I ever think that I would be one of those patients, having a port-a-cath inserted for chemo, having a bone scan and muga scan done in Nuclear Medicine to see if my cancer had spread anywhere else. I teach Radiologic technology students and imagine their surprise, when doing their clinical rotations through Radiation Oncology, I insisted that they observe and participate in my care and treatments. Class time became a time for them to learn more about what a cancer patient goes through, from the fatigue to the very itchy “cranial prosthesis” (wig) that I would end up taking off by the end of the day!

I continued to work throughout my treatments, knowing that keeping busy was one of the best medicines I could have. Having a husband and 2 children at home who needed me also was a determining factor to keep on keepin’ on. I would talk with my patients while I was going through my own treatments, sometimes comparing stories with them, encouraging them and sometimes giving them a shoulder to cry on. My current job duties as a breast patient navigator have allowed me to take what could have been an extremely devastating time in my life and turn the experience into a positive.

Would I wish what I went through on anyone else? No! But it was not as bad as it could have been. I worked with a radiologist who was a breast cancer survivor who ended up needing a bone marrow transplant. Another co-worker was not as fortunate with her cancer diagnosis, and after a re-occurrence, suffered from bone metastases and lost her battle. I look at these strong individuals and others and say thank you, I am here and I am doing fine.

Cathie

Certified BreastPatient Navigator/

Clinical Instructor/Quality/Education

Department of Radiology

Armed for the fight

2009-12-01T09:37:00.002-06:00

Susie,

Debbie sounds like an amazing woman. She is still caring for you because of the impact she had on your life to stress the importance of breast health. Thank you for being so transparent in your story.

Amy

This is not a story about a survivor of breast cancer, but more one about a women who endured the disease. Debbie was like a mother to me. I knew her since I was 7 years old when she married my neighbor, a dear friend of our family. Debbie took me in like a daughter and loved me like one. She was diagnosed with breast cancer a few years ago during a routine breast exam. After further tests it was confirmed, she had cancer. Debbie was the mother of 9 and 13 year old children at the time of her diagnosis. An energetic, hard headed, fun-loving, vibrant, hard-working, positive only begins to describe this woman. Her family (which included me) were her life! Like I said, she was like a mother to me-shortly after her diagnosis, she sat me down and asked me about what I was doing to ensure my health, had I had a breast and annual exam? When I told her no, she was upset with me especially since I was in my mid twenties. She insisted that I waste no time at all in making my appointment with my doctor and get checked out. See the thing is she knew about me past and the sexual abuse that I endured for years as a child. She knew the struggles and the fears that I was facing and offered to take me for my exam, she would hold my hand the whole time if I needed her to. She shared with me the importance of getting checked yearly and made me promise to do so. I have to say that it is because of her that I have faced my fears and am now faithful in getting checked annually to fight the fight against breast cancer! Though Debbie’s battle with breast cancer ended a little over a year ago now, she passed on to me the weapons of how to fight for if ever I need to battle, I am prepared and armed for the fight! Thank you, Debbie, You are a life saver! Love, Susie

Dumbfounded and caught off guard

2009-12-01T09:26:00.002-06:00

Shelly,

Thank you for sharing your story with us. You remind us the importance of self breast exams. Some tumors grow very quickly. You are courageous to undergo surgery for a bi-lateral mastectomy. You are a survivor!!!

Amy

"I have breast cancer!?!."

The words were hard to say for the first time and though some time has passed it's still hard for me to belive that I do, infact have breast cancer. I am a healthy 48 YO woman in Duvall Washington raising my 18 year old son and 16 year old step daughter to be. My eating habits are very healthy, my weight is stable between a size 10-12 all of my life and I have no history of breast cancer in my large family of 50+ aunts, uncles, cousins etc., But somehow, and for some reason unknown to me, I have breast cancer! Why? How? Now what?

All the smiles disappeard one by one, face after face after I told them my not-so-great news. It was shocking. My family, my friends, my co-workers; could not believe the words I had just said to them. They looked at me in disbelief at first; like I was speaking a foreign language they didn't understand. They went into shock next and then fear teared up in their eyes after it finally sunk in. I have breast cancer. They all had the same response and I do, why!?! It's not fair! Is this a bad dream?

Since that day on September 21, 2009 I have accepted my relationship with breast cancer and join many others as we walk forward together in peace to recovery.

I have been diagnosed with Triple Negative Infiltrating Ductile Carcinoma stage 2. I found the tumor on my right breast one day not too long ago; it was just smaller than a ping pong ball. The strange thing about my story is the tumor appeared overnight, one day I didn't have it and the next day it was there, a tumor. After many tests, the radiologist reported the tumor was not visible on the 7 different mamograms they took because my breast tissue was very dense; however it looked as obvious as the moon in the sky in the middle of the screen during an ultrasound. Last week on October 20th I had bi-lateral mastectomy surgery downtown Seattle. Though my left breast did not have cancer, it was my choice to have to have them both removed and reconstructed.

My choice is to live.
To live longer to be with my family.
To live longer to marry my fiance' one day.
To live longer to see my kids graduate from college, have successful careers and one day find the love of their life and get married.
My choice is to live longer so I can give longer.

I am recovering from surgery this week and will take the next steps to recovery and reconstruction over the next several months. I am loved and supported and will recover to help join my sisters to find a cure.

Peace be with you, Shelly

Watching a fighter become a survivor

2009-12-01T09:15:00.002-06:00

This story is written so well by Chandra. I know that survivors like this encourge us to be better.

Hello!
My name is Chandra and I work at Curves in North Carolina. This past Feb. I met a lovely women in our club that had recently been diagnosed with Breast Cancer. Her name is Verna, and she had a sad demeanor when she first disclosed the news with me. I instantly grew a bound with Verna, wanting her to get all the support she needed. I found her to be a strong willed, spiritual and beautiful women. She took cancer by storm! I watched the process of her treatments. When she started to loose her hair, she wore a wig...until one day I said "Verna you do know that you are prettier with that wig off then on" Ever since then she came into our club with high spirits and wig free. She always had a smile on her face, even when the radiation was sucking the life out of her. She was loosing all her fair from her face and her nails were wilting down. BUT Verna NEVER gave up, she came into our club and worked out hard. We were so proud of her. She never gave up on herself. Over the summer Verna had a mastectomy and it was a success. The doctor told her never in his years of practicing has he seen so much cancer in one breast and it NOT be everywhere on her body. Although not deemed "cancer free" officially- the cancer had been removed! She came into her club weeks after the surgery with so much grace and freedom- it made me cry. I have never met a stronger women. She looked cancer right in the face and said " No you will not beat me". She put her faith in God 100% and he never left her side. When Verna was going through her treatments, I would look at her and forget about all my petty problems. She made me want to be a better, stronger and more faithful person. I saw the transformation of cancer inside a strong women, and I will forever be a Breast Cancer Awareness promoter.

Take care & God Bless!
Chandra

Relay for Life...a way to give back!

2009-11-19T11:02:00.003-06:00

Barbara,

Congratulations on being a 6 year survivor! Relay for Life is a wonderful way to give back. As a survivor myself, I also feel the need to give back and create awareness for all kinds of cancer. I hope that your team had a great time at the relay. You are blessed to have so much support from your co-workers. What a blessing that your brother was able to receive a kidney afterall. I wish you many years ahead as a survivor.

Amy

In 2003, my brother was dying from a kidney disease and needed a transplant. I tested for him and was found to be a complete match! With much hope in our hearts, we were scheduled for surgery on a Tuesday morning in January. That Wednesday before, the transplant team called me and said I had not had a mammogram that year and would have to have one before surgery. So I rushed up to the hospital, had it and went home to prepare for the transplant. That Friday I received yet another call……they had found cancer. So, I did indeed have surgery, but not what I had planned. I had a partial mastectomy, then six weeks later, radiation treatments for more eight weeks, and finally, SIX YEARS later, I am still cancer free! Even tho I summed this up in a short paragraph, it in no way explains the pain, the heart-break, the worry, and the feelings that one goes thru when you hear that terrible word “cancer”. I am a strong Christian, tho, and I know God has a plan for my life, so I am trying to give back to those who have not been as lucky as I have been. That’s why Relay for Life means so much and I will be walking this year on October 17th in Belton, Texas! I also have 41 of my fellow employees who will be walking with me! Oh, by the way, my brother? Well, that August at 4AM in the morning, we received a call that they had a donor for him and he received his kidney afterall! GOD IS GOOD!!

Friends and Survivors!

2009-11-19T10:44:00.002-06:00

Stan,

Sharing stories of these strong women is an inspiration to us all. We never know what kind of struggles that we might have to deal with in our lives. Cancer makes us dig deep and find out our true character. Your wife was fortunate to have you by her side.

Amy

It's always a pleasure reading about survivors. My story is of two close friends that have battled and won. I lost my wife Paulette to this horrid disease, which she fought for 3-1/2 years. Paulette and my two friends, Sue and Rose Marie, are my heroes.

Rose Marie has fought breast and vaginal cancer for many years. Untold number of surgeries and she has not lost the strength to fight. Chemo and radiation are the toughest fights anyone has to endure. She also has other health issues but is there for others at the drop of a hat, always putting them ahead of her problems. Rose Marie is a great friend and widow of my late cousin Jerry.

Sue, a close friend of mine and my late wife has endured additional stress. The day my wife died, October 22, 1998, was Sue's 50th birthday. Not only dealing with the loss of her friend, she also was diagnosed with MS. Sue always joked about what she would get on her 60th. Well, breast cancer is what she got. Sue just finished nearly a year of chemo and radiation and got a clean bill of health. I hope Rose & Sue live long happy lives.

Unfortunately, I have too many friends and relatives that have struggled with cancer. These two women are outstanding examples of people that are always looking to do for others and quietly fight their fight. They truly are heroes.

Sincerely,

Stan

Kindness and love are good medicine!

2009-11-17T13:17:00.001-06:00

Gloria,

As a fellow breast cancer survivor myself, I completely agree with you that medicine is not the only important part of treating cancer. The acts of kindness,love, and support that are shown to us also provide healing to our souls. You are blessed to have such a supportive and caring husband walking beside you on this journey. We will be praying for your healing!

Amy

April 2009 I was diagnosed with stage three breast cancer. Shock set in immediately after my doctor told me what it was, and what my options were and what he suggested. I am lucky to have a very passionate husband even at our age of 63 and he was with me 100% of the time while we decided what was to be done. I had my right breast removed and several lymph nodes removed with the results of no cancer in the nodes. My doctor was told by my husband that he was to do what ever it took to remove all the cancer and if it meant me loosing my breast, well, he could only play with one at a time and he would rather have me sitting in my chair next to him complaining about it than not there at all. He has cared for me everyday with changing my bandages, bathing me, cooking , cleaning, all of it. I feel my recovery from surgery was faster due to his loving care.
Now the chemo has started and that’s a whole new recovery. The first one was really rough on me but I made it through with my husband making me eat when I didn't want to and making sure I ate what was needed. The second one went a lot easier and the recovery from it was much faster. Being petrified of needles my husband is right there with me when I have to go each week for the blood, for my chemo, for the shot the next day, and making sure that any questions that need to be asked gets an answer. I have four more treatments to go and knowing that he is there with me every step of the way has made it so much easier that the stories I have heard from other people that are there with me.
I was told they have all the cancer, but being that it is Invasive Lobular Carcinoma, they have to give you chemo as it will surly return with it. With the help and love of my husband , being a survivor has been a smoother transition than most I am sure and I am proud to tell anyone. I think sometime that not only the medicine is what helps you survive.
Gloria

Devoted Sister and Survivor!!!

2009-11-17T13:05:00.002-06:00

Linda,

Thank you so much for sharing your surivor story as well as your sister's. It's hard sometimes to think that cancer is a blessing, but you are right...it teaches us so many things...especially how to live. You are a living legacy of your sister. It sounds like you had a great support system, just like your sister did. May God bless you on your journey with cancer. You are a survivor and an inspiration to us all!!!

Amy

My story starts with on a road trip to Calgary with my older sister, it was Oct, 1996. She was twelve years older then me, at the time she was 48, and she was my mom, my sister and my best friend all rolled into one. We had the best time together, we could laugh untill we cried and we always managed to get lost on the road somewhere and have to phone someone to find us. We had a wonderful weekend and on the way home she casually said, I have to go to the hospital tomorrow, I have a syst that the doctors need to remove from my breast...you know that feeling you get in the pit of your stomach when something really bad is going to happen? Thats how I felt. Two years before she had found a lump and the drs said it was just a syst. I think I knew the moment she told me, she was going to die. I cried all night in my husbands arms and he kept saying Breast Cancer is the most cureable cancer there is, she is going to be fine. I went to the hosptial at 6:30 am the next day and I sat with my sister untill she went for her surgery, and I was waiting for her at 9pm that evening when she came out of surgery. The Doctors removed her left Breast, he came into her room and told her that he removed twenty lymphnoids and in his opinion she would have at least a stage III cancer. That day my sister started a courageous battle. We were a team against cancer, but nothing we did changed the outcome. Chemo was so hard on her, from the minute they hooked the IV into her arm she started throwing up and I was right beside her holding the pail and gaging with her, sometimes we could laugh about it most times we just got threw it. Within the year she had two more surgeries on the same side and her cancer matisized to her bones and she died early in 1998. I was her caregiver, I moved into her house and took care of her and yes we both had families but we needed each other. Her death left me angery, and in some ways bitter, extremely lonely and so sad. I started working two jobs and I did that for seven years, untill I was so physically exhausted and sick I had to slow down. I almost removed myself from my own families life. And I have to say I lived with alot of guilt because she was so sick and I couldn't help her. There were many times I used to think I wish I could die because I missed her so much. I was so angery after she died I removed myself from all contact with my other siblings. I had very few friends, not because I'm unlikeable but because I just didn't want to be around anyone. If someone did something I didn't like, I just cut them out of my life and I could do that with no remorse, if you can imagine.

Then on the Labour Day weekend 2008, I was doing my monthly breast exam and I found a lump in my left breast...that same sick feeling, I knew just touching it, it was going to be cancer. Sept 02nd my 48th birthday! I went to my Doctors office and said I think I might have found a lump. And he verified it, and reached under my arm and then said get dressed and come to my office. He told me I would need an emergency mamogram, and he contacted a surgeon for me. It was like walking under water the next day waiting for the mamogram place to call for an appointment. I told the ladies I coffeed with and the amazing thing was, I had coffee with seven women I was the baby of the group, the oldest one being 55, and Everyone of those women had found a lump at one time or another and they all told me their stories and I actually thought maybe it might not be cancer. I got called for my mamogram, the appointment was Sept 04th! I though holy someone must think this is bad. I went for my mamogram at 11am on Sept 04th they never asked me to stay for a biopsy so I took that as a good sign. I went back to work and was in meetings for the rest of the day. At 4pm I went back to my office and there were messages on both my cell and work phone. My Dr's office called and said we are waiting her for you please come right after work, so I called my husband and we went in. The Dr said there is no easy way to say this so I'm just going to tell you. The mass is coming back cancer. I said how can they tell without a biopsy? He said because of the shape, it consistant with a cancer because it has tenticles. My husband was crying, I said ok we need to get this breast off fast! my sister died within fourteen months of being diagnosed, this cancer is going to move fast! I took my husbands hand I couldn't say that it was going to be ok because in my mind if they could spot this on the mamogram and it had tenticles it was huge! And I thought I'm going to die, and in that split second I thought what in hell! I don't want to die! I want to live. That was my first change!
I have to say there must have been an angel on my shoulder, because Sept 04th I was diagnosed, Sept 09th I met my surgeon, and was told it would be up to 3 month wait to get the next tests I need to have done before surgery. I was back in my Surgeon's office by Sept 15th all tests complete! My surgery was scheduled for Oct 09th and I had a full mastecomy of my left breast. It all happened so very fast! I have three daughters, and I was so scared but I couldn't let them know how scared I was, I needed them to know that I was really ok with everything. My youngest daughter came to me with forms for the CIBC Run for a Cure and asked me to walk with her for this fundraiser. Of course I agreed right away and then we planned a fundraiser for Oct 03rd the night before the run. We had a Bye Bye Boobie Party, and I invited seventy ladies to a little hall had appetizers and we sang songs, read poems and told dirty jokes. We wore fake boobies and had a boobie tree. We had a wonderful lunch and lots of drinks. I was amazed they were all there for me! The owner of that restaurant said to me after the evening was over, that she had never felt so much love in a room. It was wonderful, those ladies laughed and cried with me. They roasted me and wrote songs about me and they toasted my courage in the face of this storm, and I was amazed. Because I didn't see the courage they saw I only seen the war I had to fight, and that night gave me the strength to do it. And without a doubt I knew I wanted to Live!

The days passed very quickly and it was the day before my surgery, I had been putting one thing off long enough. That afternoon I called siblings. My oldest sister and I cried together she told me she loved me and she wasn't angry with me at all. She was just glad I had called. My brother was the same he just wanted to be part of my life and was so releaved that I wanted him to be. I had made my amends with all the people I truely loved but was too afraid to get close to, because I don't think I could stand to loose anyone else.

The surgery was successful, however I had a fall the night of the surgery and a large blood clot formed under the insision. The surgeon had to open the insision and rinse the clott out, that left a gapping hole that was 11.5 centimeters across my chest, and 4 cm deep! It took 7 months to heal that insision. Everytime I had chemo it broke open, I had to go and get it packed everyday. Finally when the chemo was over I went back to the surgeon had another operation and she closed it up for good. My chemo was ok I had 4 rounds and although I wouldn't wish that on my enemies, it wasn't as bad as what my sister went through. I was diagnosed with Invisive Ductal Carsinoma, it was a stage one cancer, but it was a grade three cancer, and I am HER2 positive, which means I continue treatments for a year after the chemo is over. I go every three weeks to the cancer clinic and I get a drug called Herceptin that works agains the cloning cell HER2. Unfortunately I am alergic to this drug! So it is harder on me then the chemo was. What is supposed to be a walk in the park has turned out to be a bit of a crawl. But the good news is I only have 11 more treatments!

So after this lengthy story, I have come full circle. Cancer started off taking away someone so important to me, changing my personailty and my outlook on life. It filled me with fear and loss, in my mind it took my family away from me. I became lonely and angry and in ways I had stopped living. Cancer ended up giving me back my life. Once I was diagnosed I realized how important life is. How much I wanted live, how much I loved my imediate family as well as how much my extended family means to me. It made me realize that harboring anger and remorse gets you no where. You get back what we put out in life. I now am greatful for everyday that is given to me. I take the present I open it each day and I enjoy it to the fullest. I'm so Thankful that I found my cancer early and I'm so amazed at how much people care for me, and how supportive they have all been. Most importantly, the guilt I felt about my sister is gone. I have now walked in her shoes, I know that its just the grace of god if you get to stay a little longer or go home a little sooner. Now don't get me wrong! I'm not glad I had cancer or anything like that, I've just learned from the experience I've had.

Thank you

Linda

ps please forgive my spelling I can't get spell check to work!

Early detection does save lives!!!

2009-11-17T12:47:00.001-06:00

Carolyn,

Thank you so much for sharing your story with us. You have so much courage! The message that this sends to us all is that early detection does save lives! Praise God that your cancer was caught at an early stage. Congratulations on your upcoming 50th birthday! Birthdays are so special to everyone, but especially to the cancer survivor community!

Amy

My journey started while recovering from back and shoulder surgery. I had already been on the table 5 times,which included 3 lumber epidurals. remembering I still needed to see my annual ob/gyn,eye,dentist, and of course my
favorite, mammogram. Getting everything done, I saved the best for last. To my surprise they found a mass. After the biopsy,tests doctors, MRI's I had a lumpectomy and waited for the best. My surgeon tried to get it all, and
found a larger mass the MRI didn't see.With my heart in my throat, the words bilateral mastectomy. I couldn't see going through this again, and had both breast removed. Bless with unbelievable doctors, and the best plastic surgeon, and two more surgeries,(removal of both breast, with expander's put
in and the third permanent silicone implants) I was healed. I am a two yea
r survivor! Getting checked and find the cancer early saved my life. I was
stage 1, and didn't need radiation or chemo. Next year I'll be 50,
take care of you, Carolyn

Even after reconstruction...get your mammograms

2009-11-17T11:33:00.001-06:00

Robin,

Thank you so much for sharing this information with the other survivors out there that might be thinking they no long need a mammogram. No matter your age or what type of reconstruction you've had, yearly mammograms and visits to your doctor are so important. I hope and pray that your mother is feeling better. I'm sure that this has been very difficult for her and your family. We'll be keeping you all in our prayers.

Amy

My mother had a double mastectomy 30 years ago. She never really thought about herself, she was always taking care of everyone else. So she hasn't had a mammogram in 8 years. Well, she has been feeling sick for a while. She aches and has no energy, it's just hard to get up and go. She thought since she's going to be sixty this year it was her age. Last week she went to the Doctor and found out that both implants have busted open (who knows when) and now she has polyps all over her insides and will have to go through at least one surgery to remove the implants (which will not be replaced) and clean the mess in side of her. So everyone please keep your appointments for your mammogram's.
Robin

For the love of my grandmother

2009-11-17T11:19:00.003-06:00

Stevey,

It is so touching to hear you talk about your grandmother. The best news of all is that she is doing so well. It is also so encouraging that at your age you are bringing awareness to the fight against breast cancer. I hope and pray that there is a cure in our lifetime.

May your grandmother continue to have many healthy, happy years ahead of her.

Amy

My grandmother, Elizabeth, had breast cancer and was a breast cancer suvivor.

When she first got it, it was shocking. It's one of them moments where you don't expect something that drastic to happen to you or to someone you love. But it did, she had breast cancer on both sides. She had to go through chemotherapy and radiation. It was scary at first. We weren't sure that the treatments were working, it was already bad enough that we caught it at a bad stage. But all of our prayers went through and my grandmother survived. My grandmother is now 72 years old and very healthy..

My name is Stevey and I am 17 years old. I wanted to post this blog to let anyone with breast cancer know there is hope. And for females who don't have breast cancer, get interested about the situation it's serious. Go to the doctor for regular check-ups and even if you can't get to a doctor do regular self check ups. Be IN THE KNOW.

-Thank You For Letting Me Share.

Looking up to mom

2009-11-17T11:03:00.003-06:00

Kate,

It is so great to hear that your mother is doing so well. I can't help but think about my own story. It's also been three years for me as well. My girls were 2 and 4 at the time of my diagnosis, so there wasn't a true understanding of the big picture. It's good to hear the perspective of a daughter, especially one that looks up to her mother. She is so blessed to have you in her life. May she have many more years ahead as a survivor!!!

Amy

My name is Kate. My Mother, Ann, was diagnoised with Breast Cancer about 3 years ago. It all started with a regular visit to the Dr. where She had a mamogram done. We were all shocked when The Dr. told m Mom that She had Breast Cancer. After that came surgery to remove the mass from Her breast, and to remove Her Lympth nods that may cause the cancer to come back. After She had recovered from Her surgery, there were many months of Radiation to ensure that the cancer was completley rid of Her body. I cant not even begin to describe the fear of possibly loosing your mom, which I had felt from the day I found out that She had cancer, all the way through Her radiation treatments, and until She was told that the cancer was in remission.
She has been cancer free for 3 years now and We coulldnt be more thrilled. She goes in for regular mamograms and has been doing great ever since. This experience has made Her such a stronger person, and has made me really appreciate my mom more and cherish the time I get to spend with Her. My mother is a Breast Cancer Survivor, and If I happen to get Breast Cancer someday, I hope to have the inner strengh and courage that my Mother had while facing such a difficult challenge. If You or someone You know has Breast Cancer, Please dont give up hope. You can beat this!
Thank You
Kate

Sister-in-law and friend

2009-11-17T10:34:00.003-06:00

Kimberly,

Thank you so much for sharing your story about your sister-in-law. I also had my right breast removed and I remember what it was like trying to do all of the things that I used to do. She will get her strength back. She sounds like such a strong woman. You are fortunate to have each other to support and lift up. Keep having your mammograms each year. Early detection saves lives!

Amy

I have a sister inlaw who was diagnosed with breast cancer in the year 1999 and recently she had to have her right breast removed about a year ago.and is now doing chemo and so far she is doing real well. She had lost her hair but it is growing back real well.She can't really do anyrhing like lifting up heavy things so I try to help her when she needs it. She is a real fighter. She is the only sister inlaw I have and hope to stay for awhile.She has a brother who I am married to. Both of their parents both passed away and most of her relatives.Her brother is the only one she has left. She is strong and is fighting to beat this cancer and I hope that oneday they can find a cure for breast cancer and for other cancers as well.It is so sad to see people who are stricken with cancer and die from it is heartbreaking. I get my mamograms every year and count my blessings that I don't have it. So far they have been normal. She is my best friend and sister inlaw. Kimberly A.

Glad to be here...

2009-11-17T09:59:00.003-06:00

Thank you Kim for inviting me to be a guest writer on your blog. My name is Amy. I am 34 years old and a 3 year breast cancer survivor. I have been married for 11 years and have two little girls, 5 and 7. I work part time here at the Pink Ribbon Shop and do a little bit of everything. I started working at here December 13, 2006. Why do I know the exact date? It was the day before I found out that I too was about to be a breast cancer survivor.

I had an appointment scheduled after my first day of work. I had found a lump over the weekend in my right breast and wanted to get it checked out by my doctor. I remember asking Kim to share her survivor story with me and then told her that I would be seeing the doctor that afternoon. She was very concerned. I was really not that worried. I thought it was just a cyst. I had no family history. At my appointment, my doctor was not very concerned but thought that we should schedule a mammogram for the next morning. So, I went by myself that morning for the mammogram and waited to get dressed and go home. The nurse called me back and said that the radiologist wanted to talk to me. I walked in and looked at the films on the wall and saw a golf ball size lump on the film. He held my hand and told me that I needed to meet with a surgeon as soon as possible and get this taken out of my body. I went upstairs to my OBGYN's office to get a referral to a surgeon. I walked into her office and she was crying. The radiologist had called her and told her my news. I asked her if he thought it was cancer. She said, "Unfortunately, he is almost never wrong." I had her call my husband and I met him at the surgeon's office. A mastectomy was recommended because of the size of the tumor. December 22, 2006 I had my mastectomy. I had DCIS and invasive cancer in my right breast. I was Stage2B. Praise God that I did not have lymph node involvement. I did have 4 rounds of chemo and did reconstructive surgery about a year after that. I am doing well now and I am on Tamoxifen Therapy. I have 2 1/2 more years of that.

I truly believe that I was meant to meet Kim. She was so supportive of me and was a blessing to me during my treatment. She provided me with so much hope. God had this all in his plans. Kim and I began a local support group for women with cancer a few years ago. We meet once a month and want people to know that they are not alone in their journey with cancer.

I would have never imagined that cancer would be a blessing in my life, but it has been. It has taught me how to live and appreciate everyday that I have with my family and friends. I look forward to hearing all of your stories. I believe that is hope we cope, heal and have hope!

lots'a'stuff

2009-11-15T21:37:00.004-06:00

Hello all! Can't believe it's been almost 2 weeks since my last post.

The 5K "Walk by Faith" benefiting Addi's Faith Foundation went really well. Christa (my 12-year-old daughter) and I finished it together and it was a lot of fun. I felt good and my knee has been fine.

BUT I have a new problem now! My left hip is hurting me, intermittently. Only when I walk ... but not every time I walk. Sometimes it's bad enough that I limp, sometimes it's really fine and I don't feel anything at all. It's weird. I'm trying to figure it out. Wish someone could tell me exactly what is happening. Even though I fulfilled my commitment to myself to do my during-the-week training runs, because of this new issue, I had to miss my long Saturday run this week. I think I'm going to take a week off from running and see what happens, which I HATE to do ... it's not looking good, at this point in my training, that I will be able to resume training and be ready for a half-marathon in January if I take off for too long. It's really depressing! As I said before, I'm trying to figure it out. What could it be (besides the cancer returning!)? What have I done differently lately? Well I got a treadmill ($50 at a garage sale -- woohoo!) and used it once. That went fine. I did do one different workout while watching tv the other night. Laid on my back and simultaneously lifted my left leg and right arm, keeping both straight, until they touched. It didn't seem too hard. I felt nothing pop and it wasn't too painful. Hmm. It's interesting. Hope it goes away soon!

OK ya know I'm getting old when I have two totally different ailments to discuss in the same blog post! Going back to my previously discussed "problem." Let me say that the mystery treatment that I found online and was too embarrassed to share on this blog did not work in the least bit, which I thought was a last-ditch effort anyway. Soooo, finally went to see a new gyn this past week. Last year's new gyn was the one who prescribed a hormone cream for decreased libido ... which my oncologist gave a quick thumbs-down to. At that time, I also complained of painful sexual intercourse, but it was somewhat tolerable then -- nothing like it has been of late -- and she basically told me that it was due to the lack of estrogen and there was really nothing that could be done, and to more or less just do it to make my husband happy and deal with it ... hence the beginning of my feelings of hopelessness about the situation. This year's new doctor was very caring and professional, and she actually had a LOT to offer in the way of thoroughly explaining my problem and ways to help: Prescription, over-the-counter and some internet-only products. She gave me HOPE when I was feeling hopeLESS! Can't wait to start using these items and maybe get my marriage back to some semblance of normalcy. I miss it!

Skipped my dance class this week (on purpose) to attend my "Cancer Caring Group" that Amy and I started a couple of years ago but that I've not attended regularly in over a year since I started my dance class that meets on the same night. It (the cancer group) has really grown, and I felt like I didn't want to completely lose touch with these ladies. One gal in our group (33 yr old sweetie with triple negative bc) was recently diagnosed with a stage IV recurrence to brain, lungs, bones, and liver. Horribly sad, but Wow is she ever positive and encouraging! It's amazing. What an inspiration to us all! I vowed that night that I would try to attend at least every other month.

As I vow to do even more, I want to take this opportunity to officially "throw in the towel" or "wave the white flag" on handling all of the survivor stories that are being submitted to my blog. I simply can't do it, and my inability to keep up is just not nice to all the ladies who have taken the time to put pen to paper (or fingers to keyboard) to tell their story. It's wrong. So although I'd love to personally respond to everyone, I must admit defeat and ask for help! Fellow breast cancer survivor and good friend Amy has offered to field the survivor stories and "guest blog" for a while. I'll continue to blog, but I won't always be the one who's posting the new stories and responding to them. I am sure everyone will be understanding about this. Look for Amy's first post to appear in the next week or so. I'll ask that she introduce herself and post her own story. I trust that her perspective and comments will be informative and valuable to our blog's readers.

Well, that's it for now. Thanks for reading!

Kim

Long time no blog!

2009-11-02T16:00:00.002-06:00

Hello all!

Although October is a time that our blog should be kickin' with activity, as you can see I have not made a single entry since mid September! Cearly I do not have time to blog during breast cancer awareness month, The Pink Ribbon Shop's busiest time of year. (I've also accepted the fact that neither do I have the time to decorate the house for Halloween, but that's another matter!) We've been working day and night to get the orders out in a timely manner, and whew, things are finally slowing down a bit!

Another aspect of my life that has suffered during this crazy busy time is my half-marathon training. I am hanging on to my endurance by a mere thread, only running ONE day a week, and that's just my weekend long run. Not cutting it! Consequently my knee has been bothering me. Really pushing myself on Saturday mornings (9 miles this past Saturday) without adequate training during the week is not good on the body. Must ... run ... more ... during the week! I can do it, I will, I will!! Running a 5K this weekend: Addi's Walk by Faith, benefitting Addi's Faith Foundation. It's for a great cause, check it out and donate.

On Saturday's run, I got acquainted with another half-marathon trainee and we got on the subject of breast cancer ... I always wear my New Balance pink ribbon items, including my pink running shoes, so the subject tends to comes up a lot. She asked "How do you know when you have it?" Great question! I am always more than willing to tell my story to whoever will listen! Sadly, I was NOT a regular checker of my breasts. In fact I hardly EVER did breast self-exams. Thankfully God made my "lump" hurt so that I would feel for it. My advice is to KNOW YOUR BREASTS! The more you know what your breasts normally feel like, the more likely you are to recognize when something is not right. Plain and simple. So here I am, living with stage IV breast cancer at age 40-something. One can only wonder where I would be now if I had regularly checked myself and had found the lump earlier, before it had spread to the lymph nodes ... it's something to think about!

Busy-ness, Facebook, and Other Stuff

2009-09-16T15:39:00.007-05:00

Hello all! I am really feeling the pinch of breast cancer awareness month being just around the corner. Seems that everyone is getting ready by shopping! Activity at The Pink Ribbon Shop is really ramping up, and any free time (ha-ha) I may have had before is officially gone now. Our online shop is a small, family-run business for me and my husband, but it's a full time job for both of us. October to us is like Christmas to other retailers. It's a crazy time! For me, it's a balancing act to keep our best-selling items in stock while staying on top of the new product game. And everything is magnified: phone calls & customer service inquiries, donation requests, vendor issues, bill paying, employee issues, etc.

Last week, we launched The Pink Ribbon Shop's very own Facebook page! It's been so exciting, but also a lot of work. With the blog, survivor stories, and the Facebook page, on top of our regular website operations, well let's just say we are spread pretty thin! Oh and let's not forget our kids and all of their activities ... but I digress.

Our Facebook page seems to have taken on a life of its own! It started with just a few posts from our customers. It was great receiving such positive feedback about our site and products. Then fans started posting what I call "shout outs" about their survivorship -- how many years, how they're doing now, etc. It's simply amazing! This breast cancer survivor network is really passionate! I just LOVE it. So keep it coming, we love to hear from you.

On a different note, with all that being said, I am STILL working very hard to get caught up on posting survivor stories to this blog. If you've sent in your story and it hasn't yet been posted, please be patient!

Leah's Mom - Deeply Loved & Admired

2009-08-29T14:10:00.003-05:00

Leah,

Thanks for sharing your mom's story. It is my hope that when my children are grown, they admire and respect me as much as you do your mom!

Kim

Below is a survivor story about my mom, Claire B., who survived Stage 3 breast cancer.

Leah V.

<<<<<<<<<<<<<<<<<<<<<<<<<<<<<

I had just brought in groceries when my mother called with the news. Her results were in and the word benign was not part of them. The words floated around and I tried to grab a hold of them, unscramble what I was hearing and have it say something else. But there was no way to make the words malignant and mastectomy into anything but total emotional chaos. At the time I had no way of knowing that the mastectomy was going to be the easy part and that my mother, who had never even driven a car, was about to become a warrior in the biggest fight of her life—a fight for her life.

A few weeks later I had just come back from the beach when my sister called with the news. My mother, our mother, had Stage III breast cancer which had also invaded her lymph nodes. I was numb; I was scared; I was 39 years old and didn’t even know what a node did, let alone what happened when they were gone. I had a lot to learn.

What I soon learned was that my mother, the same woman who buttered my waffles when I was a kid and made meatloaf every Monday, may have lost a breast and a bunch of nodes, but she’d gained a huge set of…pardon the expression…cojones. She braved the chemo, the nausea and fatigue; she held her head high as she came to terms with the altered state of her body and knew radiation might give her the likes of a bad sunburn...without a day at the beach. Her breast was gone and her hair soon followed. As it clumped on her clothes and pillows she made the call—shave it off. We were nervous; it was surreal; for all the times I’d wanted revenge for the bad bang trims she’d given me, I’d never imagined shaving my mother’s head. With the first pass of the razor, we were giggling and rubbing her peachy soft head as if it were a magic lamp and a genie might pop out of her ear. There was no doubt what our three wishes might be and her laughter and courage to walk out of the bathroom bald left me in awe. My mom had yet again managed to be there for me, when it should have been the other way around.

Chemo and radiation not only sought out any remaining cancer cells but it infused her with a strength I’d never known she had. She didn’t shrink from life; she donned her wig and was right where she always was…front and center as part of the foundation that supported and held our family together. Watching my mom fight bravely and selflessly through chemo and radiation showed me something else as well. It gave me a real life glimpse of unconditional love and marriage. My father and mother went through the cancer together; without hesitation; without reservation, they faced it—together. Bald head, one breast and green from nausea, my mother was still the most beautiful woman I’d ever known and I could see the reflection of that in my father. Every time he drove her to and sat through an appointment; when he told her to leave the wig off at home and when he ate soup for dinner because it was all she could stomach, I saw love in its most important form…selfless support and acceptance.

It’s been almost two years since my mother was given the beautiful title of “Survivor in Remission.” It was a title I’d never even heard of nor would ever have wanted to, but when it came to my mother’s brave battle against breast cancer, it was like a Purple Heart, Oscar, Emmy, Golden Globe and being crowned the Queen of England all rolled into one. It was life being allowed to go on with her in it; it was more time for my kids to be with their Me-Mom; my Dad to be with his wife and more time for all of us to spend with this amazing woman whose hard yet elegantly fought battle with breast cancer left us in awe of her strength and resilience. Along with being a wife, mother, grandmother and friend, she is now a “Survivor in Remission.” With her battle scars fading across her chest, her arm wrapped tight against the lymphedema, and her beautiful salt and pepper hair back on her head…my mom is not only a survivor, she is also the greatest heroine of any story, real or imagined, that I’ve ever heard.

Kathy, Doing Well After Double Mastectomy

2009-08-29T14:01:00.002-05:00

Kathy,

Thanks for sharing. So glad to hear that are doing well after your double mastectomy. I have a good friend who also chose that, even though the cancer was unilateral and no lymph nodes were involved. She was 31. I always say that that's my one regret with my cancer treatments ... If I had to do it all over again, I would have had a double mastectomy. Although, when my cancer did return, it was on the same side as I had my mastectomy. Go figure!

Glad to hear that you are doing well.

Kim

My breast cancer survivor story

I had my annual mammogram on July 20th, was called back to have a more intensive mammogram done. I was told that I needed to have a needle biopsy done and on August 4, 2008, I was diagnosed with breast cancer. Fortunately, it was caught early enough that it didn't get into my lymph nodes and it was only on one side, but due to the fact that my mother died from breast cancer and the chances of the cancer returning in the other breast were high, I chose to have a double mastecomy. I am doing well and I praise God for that.

Kathy S.

Terri, 10-Yr. Survivor, Learns God is in Always in Control

2009-08-29T13:42:00.002-05:00

Terri,

Thank you so much for sharing your informative, interesting and inspirational story. Very well written! It's always good to hear from sisters in the faith.

My cancer, too, did not show up on mammogram. The lump was palpable, but very near the chest wall, so it wasn't visualized on the mammogram. Plus, I was 32 so my breasts were dense which also contributed to the mammogram not detecting anything. Ultrasound did show it, and well, the rest is history ... see my previous blog posts for the latest on my cancer journey.

Kim

10 year cancer survivor story

Cancer unfortunately will touch many of us at some point in our life. It may not be you or an immediate family member but chances are good that you will know someone that will have cancer. You may already know someone or you may be like me…a Cancer Survivor. I have found that cancer survivors have an instant bond and friendship. I use Cancer to spread awareness. Because of God giving the wisdom to physicians and prayer, will celebrate my 10 year Breast Cancer anniversary July 19, 2009. It’s funny how our minds work. I can’t remember sometimes the details from 2 days ago but I can remember every minute from July - November in 1999. Maybe that’s God’s way of keeping me grounded and keeping everything in perspective. Genesis 21:22 God is with you in all that you do. On July 1st 1999, I found a small lump in my left breast. I kept thinking why should I even worry, breast cancer doesn’t run in my family, I wasn’t over 40 - I was only 37, none of the risk factors of breast cancer applied to me. Little did I know that 80% of women diagnosed with breast Cancer have no prior family history of cancer. All I knew at that moment was that I had two sons, Jeff - 11 ½ and Justin - 10 years old that needed their Mom, and honestly…..I was worried. I had a mammogram at age 35 as a baseline and I felt healthy so when I went to my gynecologist on Wednesday July 7th, I felt the appointment was just for peace of mind. My gynecologist confirmed that there was a cyst and sent me for another mammogram (18 months since the baseline) the next day Thursday July 8th. The mammogram showed nothing…so the radiologist conducted an Ultrasound. So ladies, if you feel you need to be checked further if a mammogram doesn’t show something but you feel in your heart there is something there, insist on an ultrasound. Mammography works well for women that are post menopausal in their 60s - their breast are less dense. Mammograms are great for screenings, but they aren’t foolproof and ultrasounds work well for women in 30-60 age group. Most important, your best defense is monthly self-breast exams and yearly checkups. The statistics show 1 in 8 women will get breast cancer. Race is not considered a factor that might increase a woman’s chance of getting breast cancer. White women have a higher rate of developing breast cancer than any other racial or ethnic group. However, among women under age 40, African Americans have a higher incidence of breast cancer than white women. Breast cancer in men is rare, but it does happen. Roughly 1,900 men will be diagnosed, and about 450 will die of the disease this year. Many men do not even realize they can develop this disease. Unfortunately, this can delay diagnosis and as a result, some cancers are not found until the disease has progressed to a later stage. However, when cancer is found at the same stage among men and women, the survival rates are similar. Because the male breast is much smaller than the female breast, it is more likely the disease will spread to the chest wall. Now that I have probably unnerved you with those statistics let me give you the good news. If you are diagnosed with breast cancer, the 5-year survival rate for all women diagnosed with breast cancer is 89 percent. This means that 89 out of every 100 women with breast cancer will survive for at least five years. Most will live a full life and never have a recurrence. Your chances of surviving are better if the cancer is detected early, before it spreads to other parts of your body. In fact, when breast cancer is found early and confined to the breast, the 5-year survival rate is 98 percent. I like to believe that I am in 98% since I found the tumor and the cancer had only spread to 2 out of 10 lymph nodes. Enough stats…the Ultrasound did confirm something was there and I went to the surgeon the next day, Friday July 9th for a biopsy. That weekend was hard – just not knowing I found was worse than knowing. I have a controlling personality which made the waiting terrible but I felt God was letting me know I wasn’t in control and just trust him. Proverbs 3:5,6 Trust in the Lord with all your heart, and lean not on your own understanding. In all your ways acknowledge Him and He shall direct your paths. Less than 2 weeks from the time I discovered the cyst, I was diagnosed with breast cancer, and on Monday July 19th, 1999, I had a mastectomy and reconstructive surgery. After surgery and the complete biopsy, I was told my treatment was going to be 4 aggressive Chemo treatments every 3 weeks over a 3 month time period that would begin in August. Now let me share that you can always see that God is there and you can take instances that are perceived as bad but actually can turn out to be well worth the pain and anguish. I truly believe everything good or bad happens for a reason. So my illness brought more to light concerning my children that I don’t know if I would have known if I hadn’t gotten sick. We went to church. My sons were involved in RAs and Sunday school but little did I know that my oldest was really struggling with his beliefs. At the time I was diagnosed I remember thinking - thank goodness my youngest, Justin was too young to understand but I didn’t realize he was just keeping things to himself and he understood more than I realized. I was wrong as well that I thought my oldest, Jeff was in better spiritual shape after all he had even been baptized. But, Jeff shared with me after my surgery that he really didn’t know if there was a God. “How could God let his Mom get sick?” He was struggling with his faith. As a parent, how do you fix this situation again I am a control freak – thinking I can fix everything. But, I prayed to God that I didn’t know how to deal with this issue or how to correct it. My prayer was that my sons know him no matter what happened to me that I really believed he was in charge and I would accept the outcome as God’s Will. When my hair was falling out from the chemo, my husband and youngest son had gone to football practice. I was on the deck on Labor Day trying to shave my head….my oldest son, the non-believer, came out to help me….he said “I can do this Mom, I will shave your head and we aren’t going to cry because this is the last bad thing we are going to have to deal with…you only have 3 more treatments to go”. Philippians 4:13 I can do all things through Him who strengthens me. I believe the Lord was working that day with the both of us. Jeff grew up a lot that day and I learned it’s just hair, something that first came to mind when I was diagnosed didn’t seem so important anymore…Ladies, I really know what a “bad hair day” really is. After breast cancer, Jeff’s faith grew and he now completely devotes his life to God and is “on fire” for the Lord. He is active in his church and a senior in college and very active with the “Fellowship of Christian Athletes”. Justin got saved after my battle with breast cancer of which Jeff decided to get baptized again since he felt this time he wasn’t just going through the motions any more. Something all parents live to see is their children’s baptism and I had both of mine at the same time. Justin kept his head shaved the whole time I was bald. He actually had a teacher whose sister had Breast Cancer that in his year book stated she couldn’t have gotten through the ordeal without their talks. That was his way of dealing with me having cancer by going through the illness again with his teacher. Justin, a junior in college now is involved in many activities such as community service. His freshman year, he shared with me an Essay he wrote called “The Cancer’s Toll” of which he got an “A”. It was very enlightening for me to read his recollection of our Breast Cancer Family Experience. He writes “many people go through life encountering many unexpected events that will impact them the rest of their life. I believe the greatest impact on my life was when my mother had cancer. Although cancer is always looked upon as an awful situation, it changed many of my family members including myself for the better”. He recaps the events that I have shared with you today and closes with this paragraph “There is a greater appreciation for every moment we have here and he has a totally a different perspective on life. He values the time with each other and thinks everyone should enjoy life with a lot more playing than working (which playing he certainly does more than I wish sometimes at college). He also said “he loves that his Mom doesn’t dread birthdays like most women because that’s just one more year Breast Cancer free”. I wonder if my sons, now men, would have been different if there hadn’t been Breast Cancer and I chose to believe they are better men because of Breast Cancer. I like to believe my husband and I are also better because of Breast Cancer. We don’t sweat the small stuff. With the economy situation, we try to focus on we have our health and each other. Everything else will work itself out. We celebrate our 25th wedding anniversary last year and I plan on celebrating our 50th anniversary as well cancer free! Breast Cancer or any cancer for that matter isn’t a “death sentence” provided it is detected early. Keep your Faith – know that God is there every step of the way. Don’t wait until you have this type of experience to tell the people around you how much they mean to you and how much you love them. If you find that are going through illness or bad times in their life, it’s ok if you have a pity party even if no one attends the party but you and God, just have that good cry, pray fervently to help you focus on the good and remember my favorite verse. Philippians 4:13 I can do all things through Him who strengthens me.

In closing, always trust God to be in control. I will be the first to admit sometimes I still forget that I cannot control or fix everything. There is a Higher power – just let things be and never take life, my family, friends, health and so forth - all these blessing for granted!

Terri S.

My Health Update

2009-08-23T21:09:00.002-05:00

At the request of a few readers, here's an update on how I'm doing. In a word, Great! I continue on my monthly Zolodex injections, which are now administered by my husband, Danny. (And by the way he is absolutely the best person at doing that. Better than any nurse I've received it from!) Doing this allows us to only have to travel to MD Anderson quarterly instead of monthly, as I've done for the past 3 years. When I say "travel," I mean drive 45-60 minutes. We are fortunate to be that close to the best cancer treatment center in the world, so I can't very well complain. It's just that it's an all-day affair when we do go for my treatments, and I would rather NOT go if I don't have to.

My scans have been spaced to every 6 months now, because all of my results have been consistently good since being put on this current medication regimen of Femara (by mouth daily,) Zolodex, and Zometa. Where there once was a "moderate pleural effusion" surrounding my left lung is now only a small amount of scar tissue. I saw that chest CT scan -- it looked much more than "moderate" to me ... the doggone lung was being squeezed to less than half its normal size due to the fluid around it ... but I digress. The radiologist's reports describe the bone metastasis on my left femur, sternum, and lower spine as "healing" and "stable." Where once my chest's lymph nodes were enlarged, "grape-like clusters," they are now of normal size and barely visible. It's nothing short of miraculous, really! Really!

I've started my 2nd year of training to run a half-marathon. I completed my first one on New Year's Day of this year and plan to do the same as I ring in 2010. It's funny, but I'm in the best physical condition I've ever been in in my adult life -- And I'm a 41 year-old, stage IV breast cancer survivor!

My only real issue these days is something I don't think I've discussed here before. [WARNING: If you're my mom, dad, mother-in-law, father-in-law, or someone who isn't comfortable discussing private matters, please stop here ... Please.] The issue is sex. Since my cancer is estrogen-receptor positive, part of my treatment is to rid my body of all estrogen. My ovaries have been permanently shut down with the medication I am taking. I've been put into menopause and haven't had a menstrual period since Summer 2006, the month before beginning treatment for my stage IV recurrence. Consequently, my sex drive has taken a big hit. And on top of that, sexual intercourse is now painful. Unbearably painful.

My husband has been incredibly understanding during all of this and has been more than willing to participate in some alternative "fun." But it still saddens me! We had what I considered a great sex life before my #2 cancer diagnosis, and now it's ... not. I know that he has physical needs, and lately he has trouble accepting that my issues aren't related to feelings for him. I feel like my body has turned against me and has seriously marred this part of our marriage!

My gyn doc prescribed a small amount of testosterone cream, topically to the wrist, to help with the libido issue(My oncologist quickly nixed that idea because testosterone cream may be converted to estrogen in the body. She didn't want to take any chances, and neither did I and neither did Danny!) Gyn doc found nothing that could be causing the discomfort. I did some reading, um, Googling, and many "treatments" were hormone-based, which I cannot take because of my ER+ cancer. Currently I am trying out a definitely "alternative" treatment which I'm a little embarrassed to disclose at present. :) If it works, I'll disclose, I promise!

So there you have it! A complete and thorough update on ME. If any of you have had similar issues, I would love to hear from you. Any suggestions? (because sexual issues really suck!)

Thanks for reading,
Kim

Carla, Helps Mom then is Diagnosed Herself

2009-08-23T21:04:00.003-05:00

I really feel for Carla who, having been through her mom's cancer ordeal and subsequent failing health, was then diagnosed herself! They say God doesn't give you more than you can handle ... she must be a very strong woman!

Interesting that her cancer came back on her implants. Implants are a subject that I've been wanting to discuss on the blog for a while now. Not implants put in after breast cancer, but implants that women get merely for aesthetic purposes. I'll blog on that at a later date.

MY STORY WITH BREAST CANCER

In 1998, my mother was diagnosed with breast cancer. She had to get a lumpectomy, in which they remove part of the breast. Then, she was told she would undergo chemotherapy and radiation treatments. When she did the chemotherapy treatment, it caused her to get sick a lot. The doctors told us that she “would have down days.” I asked the doctor, “What do you mean by that?” In addition, he said, that she has to stay away from everyone because her immune system would break down. In addition, she could get sick easily. Then, my mom’s hair started to fall out. This was caused by the chemotherapy treatments. So, being the daughter that I am, I decided to cut my hair to support her, in her time of need. That seemed like it helped her a little, but you know how mothers are, that was not enough. Therefore, I got my sisters and aunts together and we bought different kinds of wigs for her. That put a smile on her face and she soon realized that her hair would grow back.

Once the chemotherapy treatments were over, she had to go through radiation treatments. The radiation treatments made her feel tired a lot. Therefore, there was not much we could do to get her energy up, again.

Unfortunately, we found out that the chemotherapy treatments caused her kidneys to fail. This is known as “RENAL FAILURE.” She was put on dialysis for one and a half years. My sisters and I got together to see who would match. Fortunately, for my mother, two of us matched, and the others had medical problems. The two that matched were my oldest sister and I. We had to undergo a series of treatments. Once the tests were over with, my mother and I found out that, my oldest sister chickened out, because her husband did not want her to do the surgery. I think that she was very scared, because she did not know what life would be without a kidney…all she had to do was ask the kidney doctors, what it would be like to live with one kidney. At this point, all I was worried about was giving my mom a kidney. Therefore, when all was said and done, I was the one who gave her a kidney.

I told my sisters that I would do it with no hesitation. My mother gave me life, so why not give her one of my kidneys to prolong her life a little more? I was a little mad, no I am lying I was mad as heck. For the simple reason, I just started my apprenticeship. In addition, my oldest sister was not working at the time, which made me have to take off from work for one and a half months. I really did not care, as long as my mother was getting kidney.

Now, the kidney only lasted for five years., due to not having her medication. She was just too proud to ask me for the money, because I gave her the kidney. Therefore, she had to go back on dialysis. Once she was back on dialysis, she began to see things. I found out about this from one of my younger sisters. That she is not doing well. She had shortness of breathe and hallucinated a lot…Once again, I tried to do whatever it took to help my mom. It has been one rollercoaster ride after another. My mother’s health started going down, and she had been in and out the hospital constantly. In and out of consciousness, we had to admit her in the hospital. After being in the hospital for so long, she said, she thought she would never go home. When she finally came home, it was only for two weeks, before she went back to the hospital. The reason for that was shortness of breathe…The last time my mom was admitted to the hospital, we received a call telling us that she would not make it through the night. We went to the hospital, to see her and she relapsed into a coma.

When they said that they were going to remove the breathing tube and not put it back, I got scared. Because, I had never gotten to tell her that I had BREAST CANCER, too. So, I ran in the intensive care room, looked at my mom and said, “MOM THERE’S SOMETHING I NEED TO TELL YOU, I HAVE BREAST CANCER AND I NEED YOU HERE TO GO THROUGH IT WITH ME, LIKE I DID WITH YOU, SO DON’T GO!!!” Once I said that, she moved her right arm and leg to let us know that she is not going anywhere. She was still with us…Unfortunately, on May 23, 2007, she passed away from heart failure, as they say. I talked to my mom three days before she had passed and she remembered that I had breast cancer because she asked me how the surgery went. I said fine. I was so happy to hear her voice, not knowing that would be the last time I would hear her voice.

My experience with breast cancer is weird because I have gone through it all. I had a double mastectomy. I was told that I was a good candidate for implants. I received the implants, and to my surprise, they felt like I was being ripped apart. Therefore, I decided to have the tram-flap, which is a tummy tuck, not to flatten your tummy, but to get rid of your little pouch. They took my pouch area and reattached it to my existing breast area, to make new breasts. It was a good thing that I did the reconstructive surgery, because they found cancer cells growing on my implants. After the surgery, I had to do radiation treatments. Now, I am just waiting to get my right breast lifted to be even with my left breast. Then, I will be all right.

Celeste, Breast Cancer and New Primary Site

2009-08-23T20:05:00.002-05:00

Celeste had the misfortune of being diagnosed with bone cancer (chondrosarcoma) shortly after her breast cancer treatment.

Once upon a time...When I was 45 years old I had a mammogram
and they found a lump, so I had a biopsy. It was cancer, 1.5 cm
no nodes involved. I did 6 rounds of chemo,(CMF). When I had pre-op
to my surgery they did a bone scan and they found an 8 cm tumor in
my femur. I had an MRI and they said it was not cancer. When I was 48
I had pain in my femur, took an x-ray and the bone was ready to break!!
I went to Mass General they did a bone biopsy and it was also cancer.
It had not spread to bone but a new primary. This cancer is called chrondrosarcoma.
The surgery for the cancer is a bone transplant with a cadaver bone. So they replace
most of my femur. I had 2 years of physical therapy. Last week I went back to Boston
for a follow-up and they found a spot on lung. The words I never wanted to hear.
I had a ct scan just this weekend so I am waiting for results.

ADDENDUM:
My results of the spot found on lungs was NOT cancer it was a granuloma.

Roz Survives and Awaits her "Perky Boobs"

2009-08-19T10:10:00.002-05:00

"Perky Boobs" with breast reconstruction ... truly a gift after having a mastectomy! Although in my case it was short-lived because of being blessed with one more baby after breast cancer -- sadly, the sag has returned (and so has the belly! :)

I am a Breast Cancer Survivor Too!

It is nice to see that I am not the only one. When I found my lump, I was doing a comparison between my left and right boob. I did not find when I did my monthly breast exam. I found my Lump in September of 2008. I had my mammogram on October 24th. I had my needle biopsy on the 30th of October. Which was very painful. A few days went by and they called me and said that I needed to see a breast surgeon. I said "okay". I knew right away and I took in stride. I also said to myself I will get through this. They scheduled my surgeical biopsy on December 3rd. A week goes by and I went to the surgeons office and she told me that I breast cancer. I was scared but I knew that I could handle it. I had no choice. I guess since my mom had Uterine, lung, brain cancer, I was able to deal with it. It seemed that when the doctor told me, I felt that my mom was looking over me. We scheduled my lumptectomy on January 3rd 2009. They tried to get it all but there still some cells that were yukky. Since I was big boobed, we thought we would try another lumpectomy. But that was also unsuccessful. We had no other choice but do the mastectomy along with reconstruction. We did the mastectomy and started the reconstruction on February 25th, 2009. And hopefully by early fall I will have perky boobs. That is what keeps me going besides my sense of humor and networking and to help other people. I take each day as it comes. I still keep positive no matter what. Even though it is easier said than done. ;-)

Roz S.

Corina, Diagnosed as 32-Year-Old Newlywed

2009-08-19T09:22:00.002-05:00

Corina's story has many similarities with mine -- of course, I've done a lot of "cancer" time during the past 9 years, having been through a mastectomy, chemotherapy, radiation, reconstructive surgery, Stage IV recurrence, and ongoing treatments. I suppose I can relate in some way to LOTS of other breast cancer survivors!

We were both 32 years old at diagnosis. We both had a positive attitude and supportive family, which played a big part in our journeys. And I, too, had a baby after cancer treatment -- my baby boy is now 7 years old and is a total sweetheart.

I just celebrated my 8 year wedding anniversary and not only does it signify another year with the love of my life it signifies my life and being here to celebrate.
8 years ago I thought that life couldn't be better. I had just gotten married and was excited to start my life as a wife and mother. My husband had three teenage children and I loved being a step mom but I couldn't wait to have babies of my own. Three weeks after we were married my husband found a lump in my breast. My choice was to just ignore it. I was terrified, knowing deep inside that it wasn't good. I remember that night I didn't sleep much at all. I prayed and prayed that it would just go away and then I would wake up and feel it still there and pray some more just hoping that God would just take it away. 2 days later my husband drug me to the doctor and a day later I had it removed. I will never forget the day that the phone rang with the news... Cancer .. How could this happen to me? I was only 32 and had no family history of cancer. Why me? Why me? Then it just hit me ... why not me? Thousands of people are diagnosed with cancer every day, why do I think I am any better than they are? No one deserves cancer. I remember that I was standing in my closet finding something to wear and I decided that I could do this one of two ways. I could cry and feel sorry for myself or I could smile and be positive. I had to go through it no matter what and it was going to be miserable enough, so I put on a smile, got dressed and faced it with a positive attitude.
I had an amazing doctor and I put all my trust in him. Some people like to do research and find out every detail about their cancer and be involved in every decision about their treatment. I tried this way and it was so overwhelming to me. I would start to think and then panic and this really effected my positive attitude so I decided that I would leave it in my doctors hands. I listened and asked questions and did what I was told and I took it one treatment or surgery at a time. I never looked ahead any further than the next doctors visit. This kept me sane then and still does today.
The worst part for me was the thought of losing my hair. I could do the surgery, I could do the chemo and radiation, I could be sick, but not bald. I ordered a wig before I even started treatments and dreaded the day when it happened. I decided once again that I needed to be positive and joked with everyone that I was starting a bald club and needed members. This really upset my sister, that I could joke about it. I just told her "hey its going to happen, I better be prepared". I started tugging at my hair about a week after my first chemo and the day that it came out when I tugged was so hard. I always had long beautiful hair that I truly loved. I held this chunk of hair and cried most of the day. I allowed myself to grieve and cry and then I made a plan. Every Labor Day weekend my family has a huge camp out with all my cousins, aunts and uncles. I called my mom and told her to pack her clippers, we were having a head shaving party. If I did it with all my family there and we made it special then it would be less traumatic for me. I gathered everyone together and we formed a half circle around "the chair". I stood to take my place in the chair and tears streamed down my face as I saw my husband already sitting there. I held his hand and cried as my mother shaved his head and then I took my turn. To my surprise my dad was next, then my stepsons and brothers, uncles and cousins. Every time someone got up from "the chair" there was someone waiting for their turn. There were 15 of us that day that joined the bald club. It made a terrible day special, a day I will always treasure. We used a lot of sunscreen that weekend and I am sure the other campers were a little worried about all the strange bald people at the lake. Bald wasn't as bad as I thought it would be. I used less shampoo and could finally get ready faster than my husband. I never did wear the wig. I was proud to be bald. I didn't want peoples sympathy, I wanted others to be aware of cancer and see that it isn't a death sentence. I wanted to everyone to see that I was living in spite of having cancer and most of all I wanted people to have hope. If they saw me bald and proud then they would know that there is hope. I am proof of that.
On my first meeting with my doctor there were 2 things he said that I will never forget. First he told me that even though he is the doctor, if there were something that he was doing that didn't feel right to me, then we would do something different and second, that I would probably never be able to have children. That was by far worse than anything. I love children and wanted several of my own. I was so angry that day. Nothing could prepare me for that news. My faith in God gave me comfort and I took it one day at a time. I finished chemo and radiation and started on Tamoxifan. I had such a bad feeling about taking this drug, it never felt right to me. One day I told my doctor that I was quitting Tamoxifan and was going to try to get pregnant. This was only 6 months after chemo and he told me that he thought that I needed to wait at least 2 years but that he would respect my decision. He said I needed to wait 6 weeks after I stopped the drug to try to get pregnant. I decided that I would give it 6 months, if I didn't get pregnant then I would go back on the medication and forget about having a baby. I was 32 and my husband was 38, with 3 teenagers, it was starting over for him and we just didn't see us starting a family if we waited 5 years (if I were even able by then) I think it was 6 weeks to the day that I stopped taking my medication that I got pregnant. I didn't think about the possibilities and dangers, I just enjoyed being pregnant. After the birth of my healthy son, I had a full hysterectomy to stop all those crazy hormones that fed my cancer. I never did feel good about taking Tamoxifan, so I took Arimidex for 5 years. I celebrated the day I got to stop. It felt so good to reach that milestone. I have been cancer free for 8 years now. I still panic if I actually stop and think about all the possibilities. I can't allow myself to worry. I have no control over whether or not the cancer will return, if it does then I will deal with it. Life is too short to worry about it. Life is too precious to worry about it. I take it one day at a time.
Cancer gave me a strength I never knew I had. It made me a better person. If trials don't make us stronger and better then the trials win. Cancer will not win, it will not beat me, even if one day it takes my life .... it will never take the person that I am.

Toni's Inspiring Story of Faith & Survival

2009-08-14T10:33:00.005-05:00

Toni, a fellow MD Anderson patient, has gained a lot of wisdom through her cancer experience and years. She has a strong faith in God and has learned to put her trust in Him. Her story is sure to inspire any of you going through a diagnosis or treatment of breast cancer.

My survival story

My name is Toni and I am a SURVIVOR! My story is probably not unique or different than many others but hopefully it will help someone else get through the process of treating the way that other survivors have helped me. Just prior to finding my lump, I had had a new premature grandbaby that I was helping raise, she was so small and fragile when she was born that I made lots of "deals" with God during her stay in the hospital. I was busy working full time in my private practice as an attorney, adjusting to being a Grandma and doing what I could to help my daughter get on her feet.

Soon after that my other daughter had a seizure in my presence and it was determined that she had a cyst in her brain. The cyst was causing her seizures and was in a place where it was not operable. Again, I began bargaining with God. "Please God, she is just starting her life and has so much living left to do, please take this away from her and give it to me, What ever you ask of me or give to me I will gladly bear it, just don't let this affect her life."

Soon after that I found my lump, and instinctively knew this was going to be my test. It was time to pay the piper so to speak. And as I expected it was cancer. I was facing the biggest fear of my life. I was always so afraid of getting cancer especially breast cancer. Suddenly, I was faced with the possibilities of losing everything that made me feminine and womanly, my breasts and my hair. Yeah, I know the hair grows back but . . . in the meantime, you still have to go around bald. And OK I did not want to go through treatment and whine around and look like a big baby. How was I going to handle cancer. Would I be able to handle it with dignity and grace or would I be a whiner??? And, there was the deal I had made with God about "gladly bearing" whatever he wanted to toss at me. Could I hold up my end of the bargain? How in the heck could I be glad about cancer. Ok God, I know I said I would gladly bear it but really do I have to be glad? Oh ,by the way, I did put one condition on God, He had to talk me through it. I had to have clear cut messages from him that he was with me holding me in his arms every step of the way.

Thus began my journey down the rocky path of breast cancer. My biggest concern throughout treatment was how it would affect my family, particularly my father because his health was not the greatest, and I knew my kids were scared too. In more ways than one my concern over the effects my health was having on my family made me stronger, or appear so anyway. I guess it was a "fake it until you make it" situation. The more I pretended that life was normal the less likely I was to let the cancer take control of my life. I was determined throughout to not let cancer run or ruin my life. I continued to get dressed every day and go to work. Often times I would have to make a pallet and rest on the floor but I made it to work. My colleagues were tremendous, offering to cover for me when I had to attend doctors appointments or just did not feel well enough to go to court. Oh, and the messages from God? Got them Loud and strong. Regularly. So much so that I could not possibly tell them all here.

Being an attorney and accustomed to research, I started out researching and reading everything I could about breast cancer , treatment options and of course mastectomies and reconstruction. I found the information out there to be somewhat frightening. The pictures I saw made me cringe. OH God am I really gonna look like that??? I soon decided that I would go against my nature and quit researching anything but where and how I wanted to approach treatment. I wanted thing to be different for me. Fortunately, I was directed to MD Anderson in Houston and found not only a wonderful hospital and very qualified doctors and staff, but what I found there which was more important than all the medicine in the world was the air of hope! The people there all the way from the valet parking attendants to the doctors and surgeons are so upbeat and positive, you cannot help but catch the spirit! That infectious attitude kept me going and in turn kept my family reassured that I would be OK. Additionally, at a teaching hospital you have an opportunity to participate in test study groups and I was encouraged in my own treatment by knowing that I would in some way help my daughters and granddaughter and the women who came after me even if it was a failure, the test study results would help others who came after me. I took great pride in participating in those groups. As silly as it sounds I wanted so much for the study to be a great success I almost willed myself to get better. The results were positive! My study was a combination of chemotherapy drugs which had not been used to treat breast cancer before. The treatment was done prior to surgery to see the effects on the tumor. In 12 weeks my 2 1/2 cm tumor reduced in size to .7 cm. After another 12 weeks of traditional chemo the tumor reduced to such a minuscule amount that the surgeon had to place a marker at the tumor site to be able to find it to remove it. I chose a segmental mastectomy instead of a radical because of the success of the medication. This did require additional treatment in the form of radiation but I felt it was a small price to pay under the circumstances.

I had a friend that just prior to my diagnosis was training and raising money for the Susan G. Komen 3-day walk and I told her she had a renewed purpose because she was walking for me. I was even able to go down for closing ceremonies which was ironically exactly the half way mark in my treatment. Seeing all the survivors walking in the walk arm in arm with their shoes held proudly overhead made me realize that I was truly not alone and that there was life after cancer treatment. In my chemo induced fog, I just marveled at how "normal" these women looked! I vowed at that moment that I would walk in the next three day walk and began training while I was still treating. Not much but I began walking and doing some Yoga.

I think that the theme throughout my story is that even though you are feeling like crap, it is your current reality and you should not quit living with purpose just because you are treating for cancer. Live with a purpose! Get well! and Blaze a trail for others coming after you.

Today, I have a happy healthy two year old granddaughter who is the light of my life. My daughter who was diagnose with the cyst has graduated from college and is now moving on to work in her field, and I am happy and healthy and continuing on with my life.

Strange as it sounds, Cancer has a certain strange beauty about it. Not the cancer itself but the experience you gain during treatment. While I would never want to go through it again, I felt truly blessed through the experience. I met survivors down my path that shared their stories of survival with me, sisters that truly understood what I was going through. I was blessed to add many friends to my life. And I gained a knowledge of my strength that I never would have known had I not had the experience. So, for anyone reading this that is currently treating I would say, Don't look back, don't look ahead, just be in the moment and get through it the best way you can and take comfort in the knowledge that you are not alone. Your sisters have paved the way for you and are here to hold your hand and comfort you along your journey.

Much love and good health,
Toni C.

Faith, 10-Year Survivor, Living Like There's No Tomorrow

2009-08-14T10:15:00.002-05:00

Faith's story is another testament to how much cancer changes your life, your outlook, and your whole attitude toward life. Live it to the fullest!

My name is Faith and I am almost an 11 year cancer survivor. My story starts back in 1998 my family and I were getting excited about going on vacation to Ohio to cedar point. One day I was in the shower and just rinsing of the soap and run my hand over my breast and felt something that was not normal it was a lump about the size of a quarter. I just brushed it off because I did not want to ruin our vacation. We stayed in a cabin for our vacation and one night I had finally told my husband what I have found. I was positive at that time that it was just something to do with my period. When we got home from our vacation I had made an appointment with my gynecologist and she reassured me that it could be nothing but wanted me to have a biopsy done on the lump. I followed up with a surgeon to have a biopsy done and come to find out he wanted to do a needle core biopsy. Not realizing what a needle core biopsy I went ahead with it and it was so painful the nurse had a hard time holding my feet down all I wanted to to was cry the pain was excruciating. Well about a week later the doctor called me and told me that I needed to come into his office to discuss the results of the biopsy and I was so positive that it was nothing that I insisted on her telling me over the phone and that was the worst mistake I have ever made. After I had received the bad news that the biopsy came back positive for cancer that is when it hit me and I sat down and cried for about an hour and then I basically slapped myself and told myself that I can beat this, I just have to get through this next visit to find out what I had to do to survive this disease. I went through a lumpectomy and they removed 13 lymph nodes and they all came back negative so the next thing to do was to start the treatments.
So I started chemotherapy and my first treatment I did at the doctors office the same day there was a serious storm coming through town and when I was almost down with my treatment we had lost power they say that a tornado and hit down in town and the streets were flooded. While this was all going on outside I was being rushed to the basement of the building for my safety until this storm was over, we had to wait about an hour. I made it through the first round of chemotherapy and radiation all at the same time. Radiation was an every day trip to midland. The radiation oncology department over there was the best. When I was almost done with my chemo I started to get my hair back and when I went for one of my radiation treatments one of the oncologist rubbed my hair and said that it felt like a baby chicks fur and then he asked me how I don't fall over because my feet are only a size 5. So they made the treatment like it was a vacation. When I finished my last treatment I went out and bought one of the oncologist a coloring book and crayons so he could learn to stay in the lines. when I was doing one of my treatments he made me laugh when he was trying to draw a line and had to redo the line from me laughing.
Chemotherapy on the other hand was not that easy I had a hard time with the second round which was called tamoxifen I had to go to grand rapids for the first treatment because they said that there might be an allergic reaction to this one and they were right about 20 minutes into the treatment i started to get the hiccups and they had to stop the treatment and give me benadryl. After about an hour waiting for the benadryl to kick in they let me go home and when I was walking down the aisle I felt like I was out on an all night drunk I rode home in the back seat of the car and my husband at the time told me when we got home that he had a flat tire so he and my son had to stop and change it and I don't remember that part of the trip at all. So I had to go back to the first set of chemo and finish with that. I lost all of my hair except for my eyebrows and to this day I do not grow a lot of hair on my legs.
When I was going through the chemo and loosing all my hair which was down to my rear my husband at the time decided to shave all of his hair of so I would not feel like the odd duck and everyone at work thought that was special. The first time that I started to loose all my hair I was in the shower and I had to unclog the drain three times before I was done so when I was finally out of the shower I had my husband shave my head and then I set in the bedroom by myself and just cried again.
Every year since being diagnosed with breast cancer I have gotten an ornament for the tree at Christmas to mark another year of being cancer free. On my ten year anniversary of being cancer free I decorated our tree in all pink. That was such an accomplishment knowing that I have beaten this disease and live to tell my story. So much more to go on about this story on how I survived this disease and the other life challenging decisions that I have had to make to go along with this disease like divorcing my husband because he would not quite drinking. I know that probably sounds rude but after going through cancer and surviving it you tend to think that there is better out there someone who takes life sober. Also surviving cancer makes people think about how they came so close to not being able to see things or experience things in life that just days ago you thought you would never see or do. So I made decisions that would allow me to grasp the chance to live my life like it wont be there tomorrow.

Catina L., Diagnosed at Age 32, 5-Year Survivor

2009-08-08T16:14:00.002-05:00

Catina has made it to the 5-year milestone -- may she have many, many years ahead as a survivor!

There seem to be so many survivors out there whose husbands either (a)don't provide support during their cancer treatments, or (b)leave them during their cancer treatments. It's amazing how a little adversity allows someone's true colors to come out! The guys who do this -- you don't need them anyway! And the strong ladies that this happens to -- they come out of their cancer journey, and subsequent relationship break-up, EVEN STRONGER!

I thank God for my husband who has stuck by me through my journey, which I like to summarize like this: two boobs / one boob, hair / no-hair / hair again, fat belly / flat belly, and two boobs again. He says he's enjoyed the variety (ha) and his love (and lust!) for me has never wavered. Thanks Danny!

Kim

My Survivor Story

Hello survivors and co/survivors,

My name is Catina and I was diagnosed with Stage 2 bilateral breast cancer at the five years ago, at the age of 32. I found a lump on my right breast by doing a self breast exam. I didn't believe it to be a cancer tumor, just a cyst or a boil. So for the next few months I had continued to plan for my wedding. Two months had went by and the tumor had grown in size. While on my honeymoon, I had noticed it was as large as a half a dollar. I still thought and wanted to believe that it was a cyst because I (thought) was to young to have breast cancer.

Well, on the first Tuesday in September (2004), I had my first visit in the mammography clinic at John Stroger, Jr. Hospital in Chicago, Illinois. The technician had performed an ultrasound on my right breast. From there I had went immediately to the Oncology Clinic. Devastating after devastation. After learning that I had dense breast tissue in the left breast with a enlarged lymph node along with the huge lump in my right breast. Like I said " devastation after devastation."

On October 28, 2004 I had a bilateral mastectomy. On January 13, 2005 I had begun my first of two cycles of chemo, once every three weeks. What kept me going was another breast cancer survivor. She held my hand the entire way. Even through the dark days when my "husband" felt he couldn't, wouldn't and didn't.

Today, I am happily divorced and living "cancer free." I often tell people that breast cancer was the best thing that has every happened to me. The immediate life lessons has taught me to appreciate the small stuff. I have learned not to rely on anyone to keep my spirits up, creativity is how to keep going. Yes, I have some bad days "cancer days" but the good days and the thankfulness that I have for just being alive is more than AWESOME.

Thank you for listening.

Catina L.
5 year Breast Cancer Survivor

Julia D., Survived Brain & Breast Cancer with Faith & Spunk

2009-08-08T15:51:00.002-05:00

Thanks for sharing your story, Julia. Two cancers at one time, oh my! I love your story, which is inspirational in and of itself, but I also love that it is full of helpful hints and inspirational messages. It will most definitely be appreciated by our readers.

I would like to share what I can remember of my journey.
With the process of monthly self examination, I was able to locate something not just
the same with my left breast.
September 22, 2000: Annual physical, pap test, and bilateral mammogram.
October 03, 2000: Bilateral mammogram was suspicious, therefore,
a Diagnostic mammogram was ordered.
October 17, 2000: Diagnostic mammogram - Possible benign findings category 3.
October 18, 2000: Additional evaluation x-ray required due to mammogram findings and an ultra
sound of left breast was performed the same day.
November 01, 2000 Lumpectomy was performed.
December 05, 2000: Lymph node removal - had moved into all stations.
December 29, 2000: Insertion of implanted venous access port.
January 05, 2001: Began chemotherapy/5FUCM. During this time my caregiver (husband) noticed
that I was slurring my speech and holding my mouth in an odd way. He reported this to my oncologist.
January 25, 2001: Investigative MRI was performed.
February 22, 2001: Secondary MRI performed. Discovered tumor on the brain, right frontal lobe.
February 23, 2001: Chemotherapy was stopped at this time.
February 28, 2001: Craniotomy performed, determined the tumor was cancer: Oligodrenglioma, Level 2.
May 01, 2001: Radiation treatments began on left breast and brain.
June 01,2001:Completed radiation treatments.
December 13, 2001: Chest x-ray required.
December 18, 2001: Started back with chemotherapy/Temador.
August 23, 2001: Completed Chemotherapy.
September 17, 2001: Follow up Chest x-ray required.

The breast and brain cancer were two separate cancers.
Breast cancer was discussed in length with surgeon, and my husband.
We decided to only do a partial mastectomy at this time.
My husband was my caregiver and accompanied me to every treatment
and all doctor appointment. He was educated as to how important listening
to your body is. Each person knows their own body better than anyone,
so listen to it when something is not just right contact a doctor as soon
as you are able. Also, it is okay to get second opinions, in fact it is
encouraged by most surgeons and physicians. Breast cancer not only effects
your breast, it involves your reproductions system. Therefore, get to know
your oncologist well, if things are changing - let him/her know. Keep a
Positive mind set and that will help you heal faster. I was lucky, my
Mother-in-law had colon cancer and we were seeing the same oncologist -
a wonderful man who truly cares about his patients - that is important too.
My Mother-in-law was given three months to live, but she held on for 19 years.
She also participated in new treatment studies until she just could not any longer.
She was my inspiration. No one knows how long we have to live, physicians are just practicing.
Remember they are human too and do not have all the answers. Do Not Give into Cancer.
YOU MAY HAVE CANCER, BUT CANCER DOES NOT HAVE YOU. There will be plenty of days
that you just want to give up, Don't ... get up and look outside at the beauty
we have been blessed with. Self pity parties will happen, just try hard not to dwell
on it too long. Talk to someone about anything.

The hardest part of breast cancer was not knowing what was going to happen:
The surgeon and I talked about the procedure but that just does not tell you what will happen.
When I made the decision to do a partial mastectomy I said, "I don't think Playboy
will be looking for me anytime soon and I really don't think I would fit in at Hooters.
I am way past the baby years, so I really don't need my breast. My husband kind likes
them though." He cracked up and said I will do just fine, I have the right attitude.

How would I look after surgery? Different of course, but not as bad as I imagined.
Is it going to hurt? Yes, it hurts, but only for a while - our minds help us forget.
Doctors will tell you that you won't feel anything, that is not true.

Will people avoid me because I have cancer? Yes, some will.... this is why it is a good
idea to find a support group near you or by email.

The chemotherapy treatments give you a chance to reflect on your life. You sit there hooked
up to the medication and watch others come in and leave. Each time you must have a blood
work up and I was so grateful to the staff that they knew exactly how to get my veins.
I had a implanted venous access port by choice, since I was working. The other port is
called Grishon and it is outside the body which requires flushing daily to make sure a
clot does not form in the tubing. When they explained how the port is inside the body, it
can be very scary. It is routed through your veins in the neck down into your chest.
Chemotherapy is poison and it smells awful, this is why you may get nauseated. Some foods
will set you off as well, the smell or taste. Just know, this to shall pass. The implanted
venous access port is place on your chest just under the skin, it leaves a bulge there.
Sometimes it will be soar from the chemotherapy insertion, but it does not last long. You
can ask for some medication that you put on it prior to chemo, it helps some. I found that
when I would lay down on that side, it would hurt. Getting it removed hurts too, has to be
done surgically (out patient).

I was working during my cancer and many people would not even talk to me anymore.
When I would get sick from the chemo treatments,they thought I was putting on.
Good thing my department manager had been through it and he knew. Often he would come by to
check up on me and tell to head on home and beat the traffic. My supervisor thought I was
making the whole cancer thing up. She even came to the hospital to make sure that is where
I was. You just have to let these things roll off, it is hard because of all you are going
through. The people at the oncologist will become your best friends, they understand.

A childhood friend connected me with another friend(Susie)by email to help support her and
she helped support me. Angels come to us in the strangest ways, I have learned to count my
many blessings.

Brain Cancer was really scary, I just could not imagine what opening up my head and cutting
my brain was going to do. The neurosurgeon was very blunt and said that we had to do the surgery
to find out what kind of cancer it was, I agreed. He then said that I would probably die, have a
stroke and lose my memory during the surgery. Oh, that was real comforting. I tend to be a bit
of a smart alic when I am scared so I said "Well, sign me up." He did for the following week.
Then he said go home and get your things in order because this will probably be the last chance
you get. It did not hit me until I was on my way home, my husband asked "Is this what you want
to do?" What other choice did I have? Our daughter was away in college and we drove up there to
let her know. We did not want to tell her on the telephone because she was alone. She handled it
well and that weekend she came home to help make my funeral arrangements with us. Funerals are
just way too expensive for a body just being place in the ground. I opt for cremation which makes
better since to me anyway. With that taken care of, we went home and tried to go about our routine.
I sat in the dark late that evening and wrote a letter to my husband and another to my daughter.
I just wanted them to know how much I loved them and that I was not giving up without a fight.
I refused to let any doctor tell me I was going to die, how does he know anyway. I am of Irish
decent which I inherited stubbornness and the Don't give up attitude. I truly believe that is
why I am still here. Praying had a great deal to do with it as well. I turned it over to God, he
knows what I need. My Aunt who lives in Philadelphia and is a Catholic Nun sent me holy water to
place on my forehead before surgery. That too played a big role in my survival.

I do not remember much about the brain surgery except that the surgeon said I talked the entire time.
I do know that my head was cut from ear to ear and my face pulled down to my chin. Got a free face lift.
You have to be partially awake to perform brain surgery so the surgeon can tell just how far to go.
Your brain and a tumor look the same, not like a tumor in your body. I do remember bits and pieces
from recovery - my whole family was there, my husband's whole family too. People came in and out for
about an hour to see me. At one point- I said "I have a head ache." My older brother was in the room
and said "No Sh##, you just had your head cut open." The nurse came in and gave me a shot, that put me
out and I don't remember anything after that. I do remember how much trouble the nurses were having with
my IV's, I finally said get someone in here who knows what they are doing. My right arm swelled up like
Popeye's. I worked hard everyday to remember all the names of people who came to see me. The nurses would
right their names on the board, but I could not focus to read it. I was in complete darkness which was
wonderful. The nurse would come in and ask me what day it was .... how the heck do I know, I don't even
know if it is day or night. The nurses always told my husband or daughter that I was the most polite patient
they had ever had. You never get any sleep in the hospital. The blood pressure cuff is squeezing the heck
out of your arm, then the leg pressure things squeeze your legs and the nurse wants to take your temperature
during all of this. She carries a small flashlight so she does not have to turn on the light - Oh thank you so very much. Dark good, light bad. Several days later I was released (never had gotten into a room), still in NCU because they did not have a room available. The ride home was AWFUL, there was way too much sunlight, and every
thing was moving around me. Motion sickness is not fun, I just wanted to close my eyes and sap myself home.
That made it worse. Got home, truly funny watching me attempt to walk in the house - everything was all out of
wack. I had a bandage/turbin on my head that looked like a huge football helmet, which was pushing my right eye closed. Then my sweet husband turned on the television for me - Oh my goodness, looked like strobe lights in color.
I would have to get MRIs on a continual basis to see how things were progressing. MRIs are the worst thing ever invented. It felt like I was a hug hot dog being pushed into a bun. Then all this racket starts, banging like a rock band that needs help, hammering like a jackhammer, and this goes on for about 45 minutes.
Then you are pulled out only to discover that they are going to inject a dye and put you back in. The whole process takes about an hour. Needless to say, if you did not have a headache before, you sure will after.

I SURVIVED IS THE MOST IMPORTANT THING AND KNOW THAT THERE WILL BE A CURE SOON.

Thank you for the opportunity to tell my story.

Hugs,
Julia D.

Karen, 22-Year & 2-Time Survivor

2009-08-08T10:37:00.003-05:00

Thanks for sharing your story, Karen.

Whew, you have been through a lot, lady! So glad to hear you are doing well.

I, too, couldn't believe my misfortune when I had a "local" recurrence at the site of my mastectomy scar from 6 years prior! I read that only about 1% of recurrences occurred there. I thought, "Why must I be in that 1 measly percent!?" Unfortunately I later learned that this new lump on the same side was not an isolated recurrence ... the cancer had also metastasized to the bones, lung and many lymph nodes. :( But that was 3 years ago and I continue to live life to the fullest despite my stage IV diagnosis. I am blessed ... nothing short of a miracle in my eyes. Were it not for modern medicine, I am certain that I would NOT be alive today.

Let's keep funding cancer research. We need more success stories like yours and mine!

I was first diagnosed in 1987 at the age of 31. At the time I was married and had one daughter age 6 and a step daughter age 16. Stage 1, node negative. I chose a lumpectomy with radiation. At this time there wasn't any breast cancer awareness, you just dealt with it. My husband did not deal well and to make a long story short, within a year I filed for a divorce. It got very messy and he ended up committing suicide. So much for no stress in my life. Now I was 33, a widow with a young child to raise and a breast cancer survivor although no one really wanted to talk about that. It only happened to older women.
Life went on, as I knew it would. I met a wonderful man who became hubby number 2. He accepted me as a breast cancer survivor, my hodge podge family, (I was also helping my best friend raise her daughter) and I gained another step daughter.
Life was great and we got the surprise of our lives when I was 39 and we found out I was pregnant. After a difficult pregnancy we had us a healthy baby boy!!!!
I celebrated each year on the 6th of March, thanking the Lord for giving me another year.
Then the year 2000, my breast doctor called out of the blue wanting me to get an ultrasound. Funny I just saw her a couple months before, we had looked at my recent mammo, decided spot was more than likely scar tissue when comparing it to several past mammograms, now she wanted an ultrasound. It just couldn't be cancer again, I was 13 years out, even though in the back of my mind I knew. Sure enough, stage 2b, didn't even bother to check nodes again as I already have lymphodema, 7 cm her2 neg. ER pos. Had mastectomy with 4 rounds of A/C and 4 rounds of Taxol. A tram flap reconstruction and 5 years of Arimidex, couldn't take Tamoxifin because of blood clot in lung while going through chemo. I just knew I was going to die this time. My son was only 5. I could not find anyone who had breast cancer twice unless it had metastasis. I was so afraid. Finally I found a wonderful support group at Gilda's Club and on line at FIN. It was at FIN that I met someone who just like me had it more than once. finally HOPE!!!
Now I am 53 years old, a 22 years a cancer survivor, 9 years no evidence of disease, I feel blessed. I sign every relay for life sign with this:
WALKING AWAY A WINNER, THANK YOU LORD.
KAREN

Exercise and Breast Cancer

2009-08-04T16:41:00.003-05:00

As I start my second year of half-marathon training, I feel compelled to encourage all you couch potato ladies to get out and do something! Like you, I had a million and one excuses for not starting or sticking to an exercise plan. I'm too busy with work. I'm too busy with my kids. I'm too tired after work. I'm too tired after a day with my kids. I've never been a runner. I'm just not athletic. I can't even jog to the end of my street. I get tired just going up and down the stairs. Or, my own personal favorite (that I myself said frequently): I'm fat and happy!

When people hear that I ran a half marathon after training for just 6 months, I sometimes get, "You're obviously gifted athletically." This couldn't be farther from the truth. In school I never ran track, played volleyball, basketball, softball, or any other sport. I danced during high school, but after that I was rather inactive. My sedentary lifestyle led to a gradual weight gain and with that, a poor self esteem and embarrassment of my own body. Four kids and two bouts with breast cancer later, I was heavier than I had ever been, and I didn't feel good.

At age 40 and with a Stage IV cancer diagnosis, I joined a running club that met once a week for a group run and provided a during-the-week training schedule that, if followed, would prepare you to run a half marathon in six months. It worked! The sense of accomplishment of completing a half marathon, even at my slow jog pace, was amazing. What's even more amazing is the transformation my body has undergone. It's still far from perfect, but I feel so strong! I AM strong!

I know that not everyone with cancer can go out and start running. I know that I am truly blessed with the physical ability to do all these things, especially with Stage IV breast cancer. But I am here to say that the human body is an amazingly made thing! I went from total slough to half marathon runner in 6 months. Along the way, I lost 26 pounds and gained self-confidence, endurance, strength, and cardiovascular fitness. I never in my wildest dreams thought I would run for fun and exercise. It's not the actual running that feels good (sometimes it's quite difficult and painful.) It's the results of the running that feels good!

Additionally, studies have found that women who exercise regularly have a reduced risk of developing breast cancer. And among women who have already had breast cancer, those who are active can reduce their risk of recurrence. Here's a link to an awesome Q&A by the experts on breastcancer.org: http://www.breastcancer.org/tips/ask_expert/2006_01/. So what are you waiting for??

Thanks for reading.

Lucy D's Essay on Chemotherapy

2009-07-26T17:25:00.003-05:00

My name is Jeannie (or Lucy as most people call me). I was diagnosed with Breast Cancer in May of 2005. After surgery and a year of treatments I decided to quit my job and go back to school. In English class we were asked to take a word and write an essay of why your definition of the word is different from that in the dictionary. My story is attached.

The Chemo Emotion

The American Heritage Dictionary defines chemotherapy as “the treatment of cancer and other diseases using specific chemical agents or drugs.” This definition, though clear-cut and concise, fails to communicate the overabundance of physical and emotional side effects that accompany chemotherapy. Excessive nausea, lack of sleep, a wholesale distaste for food, and extreme emotional turmoil are just a few examples among the many. I found the treatment to be far worse than the disease itself. My life as I once knew it was literally turned upside down. I experienced a nightmare all in exchange for the possibility of an extended future. It is for these reasons and more that I find the definition of chemotherapy as set forth above to be so remarkably inadequate.
There are a plethora of chemotherapy drugs and, consequently, a tantamount of combinations of these drugs. When determining the proper treatment the doctor will consider the type of cancer, how far it has spread, and the patient’s health. My chemotherapy treatments consisted of three drugs which I received intravenously every third Tuesday for six months. Each session lasted anywhere from three to five hours. To ensure my blood cell count was within normal range, blood work and a booster shot was vital to each treatment. After a few sessions, with arms sore from needles, I became sick just from the smell of the chemo room. There was a feeling of anxiousness that filled the days prior to my treatments while the week following was filled with tears, nausea and depression. I would cling to my one week of normalcy.
There are numerous pamphlets, binders, and other materials which explicate the many side effects of chemotherapy. Nowhere is it written that there is an emotion to be experienced unlike any other. This emotion triggers feelings of pain, fear and helplessness. Life is full of emotions. When we experience an extreme or unexpected emotion it causes great distress. In normal life situations we need only relate this feeling or emotion to something familiar in order to find comfort. The chemo emotion has nothing to relate to. There is no familiarity, therefore, no comfort. And, though you may be surrounded by loved ones, the emotion leaves you feeling weak, scared and lonely.
Chemotherapy will bring tears! A sad story or song, tender words from a loved one have brought each of us to tears at some time in our life. My brother, and one of my closest friends, will say “you made my face leak”. I would feel the tears running down my face and found myself frantically searching for “why?” One particular night after chemo, listening to soft music to help myself sleep, I felt the tears. I laid there sobbing, needing help, needing to be held. I somehow found myself in the middle of the hallway blurting out my husband’s name. He held me throughout the night, through cycles of tears and calm. It is amazing how strong your circle of support can be. This becomes extremely evident during an illness. Although the offers for support were endless, acceptance meant admitting vulnerability. As difficult as it was to finally let someone in, I found this to be beneficial for all involved.
A year later I am still working through the emotions brought upon by chemotherapy. I sometimes wonder had I named the emotion if I would have found the comfort. Although this writing is meant to be informational, for me it is somewhat therapeutic. I have discovered some positive effects to the experience. Here I am back in school getting my degree. Although I still find it somewhat arduous, I’ve learned to ask for help and realize how gratifying it can be for me and for those who are there to support me. I’ve learned to “stop and smell the roses”. Life is much too short to let the little things get in the way.
On July 18, 2005 I said “I will never do chemo”. I can never recover the time lost throughout my treatments. Through the pain, fear and loneliness I’ve learned a lot. Today I say to you “I will never do chemo”.

Marie T., 24-Year-Old, Insists on Further Testing

2009-07-26T17:09:00.003-05:00

Ladies, listen to your bodies and trust your instincts!

I, like Marie, know what it's like to be made to feel like a hypochondriac by a physician, and my experience with this was AFTER I had already had cancer! Uggghh! It was time to find a new doctor, asap! I can't tell you how many women I've heard from with similar stories.

I was 24 when I found my first lump, and the mother of 2 young kids. My daughter was 5 and my son was 4. I have a strong family history of breast cancer. While I was giving birth to my daughter in one hospital my mother was having a bi-lateral mastectomy in another.
I pleaded with my doctor to start mammograms immediately after having my son. He laughed at me and said "Ask me again when your 40". I felt humiliated, and a little like a hypochondriac.
When I found that first lump I kept it to myself. It had grown to the size of a golf ball before I told my husband, it only took a matter of a few weeks to get that size. By that time I realized it wasn't going away and I was scared to death. I made an appointment with my NEW doctor. She had seen the month before for my yearly exam. So when she seen(yes I said SEEN) the lump she sent me immediately for a breast ultrasound. The results prompted an immediate mammogram.
I was sent to a surgeon the following day, and in surgery the next. It all happened so fast my head was spinning. I had no answers for my kids or my husband, who was supportive through it all.
The results were good. It was a fibroid cyst, but that's not the end of my story. Two weeks later I was having another lump removed. One week later I had A cyst rupture when I bent over to pick something up. I was rushed in for emergency surgery. One again I didn't know what the outcome would be. Still no cancer, but by now I had had enough. I begged my surgeon to remove both breast, I couldn't handle the pain or being away from my kids. Or waking up each morning wondering if today they would find the cancer.
I was 25 and having a bi-lateral mastectomy. They did find the cancer! When they removed both breast and sent it to the lab they found cancer cells. I felt great I had got the jump on it. The hard work was yet to come. I came home with tubes coming out of everywhere. My kids were scared of me. But I was alive!
I felt like I could take on the world. Then I got a severe case of pneumonia. I was hospitalized, and put on morphine to kill the pain so I could breath. My son came to see me once, I told my husband I was feeling better and he could bring him in. I didn't know I would take a turn for the worse. When he came in the door I was throwing up and green. The nurse was trying to braid my hair to cover the bald spots she didn't get very far before I got sick. I heard my son say to his father as they left "Is my mommy going to die?". It broke my heart.
Now seven years later I stand strong. That nightmare has changed us all. My son pulled away from me, it took a long time for him to realize I was here to stay. My daughter turned into a mother hen. She helped me the whole way. And now shes about to turn 13 and I show her my scars, and tell her how important it is to know your body. Listen to your instincts, if one doctor doesn't listen find another and another. Your life is worth what you put into it

Thank you for letting me tell my story. I've never shared it before, the thought of directing just one person in the right direction makes it all worth it.

Marie T.

Carmen Lives to See Her Grandson Born!

2009-07-26T16:43:00.002-05:00

Like many survivors, Carmen reached her lowest of lows during her cancer treatment. Family, sense of humor, determination and lots of prayer helped her through, and she continues to celebrate every day of her life as a survivor!

Breast cancer... those two dreaded words were magnified as they became "the" diagnosis. I saw a tear drop fall on my leg in slow motion and the room around me moved. It was 6/12/06 at 10 am....for a few seconds I floated and then I felt I had to snap out of it. My husband and daughter were attentive to every single word the surgeon was saying.... I was just there.

I had a lumpectomy on 6/27/06, followed by 4 rounds of chemo, 33 radiation treatments, a year of Herceptin and cleared on 10/19/07. That's it in a nutshell. Were there "bad" days??? of course. There was a chemo treatment I dubbed "the weekend from hell"; I felt dropping into a black, black hole; I told my husband I was done, tired of "this @#%^&*"; he took me in his arms and said "babe, there is a light at the end of the tunnel....we'll find it" and we did.

With him, my daughter and son-in-law by my side, my son's voice via telephone and tons and tons of prayer buddies, I made it. Humor was a big part of our ordeal; had photo shoot done with my daughter.. she said to me 'mom, you have cancer, cancer does not have you.. let's get some pictures taken so we can remember what you've overcome" I continue with tests as ordered... I owe it to myself.....

The icing on the cake... my grandson was born 12/15/07, so he and I celebrate our birthdays together... Life is definitely good.....

Carmen A.

Softball Girls Going to Bat for the Cause!

2009-07-21T11:15:00.002-05:00

This is awesome! I love to hear positive stories about today's youth.

I just want to share a story not as a survivor but as a coach of a 14U girls softball team. We participate in many travel tournaments in the NY, NJ and PA area. When my team found out that a particular upcoming tournament was donating a percentage of all team fees to Breast Cancer the girls wanted to do more. For the entire weekend they are going to wear pink uniform shirts and socks to go along with the pink ribbon tattoo that we ordered from the Pink Ribbon shop. In additions each player on the team is going to donate $0.50 for each run we score as a team during the entire weekend, as well as bake and sell cupcakes to add to the donation. They cannot wait for that weekend tournament. I am very proud of what these girls (young ladies)are doing.

Carmine M.
NY Lady Cobras
14U Fastpitch Softball

Lena, 9-Year Survivor Diagnosed at Age 29

2009-07-21T11:05:00.003-05:00

Lena,

Thanks for sharing your story. I'm sure it will inspire other young survivors to continue living life to the fullest.

Kim

I guess you could say it all began in the early winter month of November 2000 when I found a lump in my right breast. Thinking it would be just a routine benign tumor(had already had one removed 10 years prior), I scheduled an appointment with my regular doctor. After an ultrasound and a biopsy confirmed the opposite of what was expected, I entered a new phase in my life-the world of Stage II Breast Cancer. I was only 29 at the time, with no immediate family history of this disease. My tumor was a fast growing one-it was as if it had developed overnight. But I have always done self-examinations since an awareness was always a part of my life. I immediately had a lumpectomy and lymph nodes removed. My goal was to get rid of it ASAP. Thus began my journey into the treatment of Chemotherapy that I had only read of in books and seen in the movies. I was sick most of the time, my long, shoulder-length hair disappeared, and the only thing that lifted my spirits were my true friends who didn't stay away for fear of contagion or lack of words to say. But most of all, my 4yr old daughter kept me adamant and strong in my fight to beat this thing. I wrapped up my treatments mid-summer that year and decided to pursue a life that would not ever be taken for granted. My joys and dreams and energy was put into being the best mom I could be for my daughter as a single parent. I also had a network of 6 friends-all survivors too. We shared the same faith, same strength, same compassion for each other. And we always shared our feelings with many tears and quiet moments-because sometimes there were no words to describe what we were going through. But then, in 2002, my small circle of friends began to lose their battle due to recurrences and metastases........my own recurrence befell me in the month of July of 2002. One of my friends was even hospitalized with me on the same floor. Because I no longer wanted the worry of always looking over my shoulders at this deadly disease, I opted for a mastectomy.......sadly, my friend no longer had that option-hers had already spread to her spine, bones, and eventually her brain. She succumbed in November of that year. But her positive spirit and the boldness she displayed(even taking a trip to Switzerland that year!) gave me the courage to keep fighting. Several more of my friends lost their battle that year and in 2003, but I am happy to say that my memories of the good times we shared will always stay in my heart. I completed more Chemo in 2003 with about 5 or 6 surgical procedures(including three failed medi-port implants). My daughter graduated Kindergarten and in '04 I opted for reconstructive surgery-I didn't want to have to replace the prosthesis my daughter had accidentally damaged while playing with it one day.....I decided after all was said and done, 2004 would be a year of change for me. I moved to Florida and began a new year with my cancer in remission. I am happy to say that 2004 was indeed a year of change-for the better! I married a wonderful, caring man, and we have now settled comfortably near where I have always dreamed of living-right near the ocean. I still have my appointments, I still have my days of the long term aftereffects of chemo, like brain fog, and chronic bouts of pain, but I am happy. And its good to know that any survivor of breast cancer is a fighter, united with others who, as a sisterhood share a common bond.

Lena

"LIFE IS NOT ABOUT WAITING FOR THE STORM TO PASS, IT'S LEARNING HOW TO DANCE IN THE RAIN"

Dina B., 43-Year-Old Two-Time Breast Cancer Survivor

2009-07-21T11:02:00.001-05:00

Dina,

Thanks for sharing your story. I apologize that it's taken so long to respond ... it's just me handling all of this!

You are so right -- the Lord is definitely looking out for you. Our lives are in His hands, always, no matter what happens or how bad or hopeless it seems.

Thanks for doing your part to spread the word about methods of early detection (monthly breast self-exams and yearly mammograms.) And as I said in my recent blog post, it is so important to fund cancer research! Thank you for doing that.

Kim

I am a 2 time survivor of Breast Cancer. At the age of 36 I was diagnosed with stage 2 cancer, I went through radiation and was very fortunate not to lose my hair. Then again at the age of 40 I was diagnosed with stage 1 cancer in the other breast. After having surgery I went through Chemo and still again did not lose my hair. Someone must be looking out for me.

All the time I went thorough my battle I think of so many other women and men who go through what I have and do not have the same outcome. I think about it every day of my life. That is why I wear some form of Pink everyday and do all I can to let my friends and family know how important it is to do your monthly check and to have a mammogram. I am 43 and working the best I can by doing as many breast cancer walks and runs as I can, to promote and raise money to end this ugly desease once and for all.

Dina B.