Quick Update from Kim

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!

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

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)

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

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

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!

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

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

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

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

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