Walk Like a Diva

Saturday, my family and I participated in the Walk Like a Diva 5K Family Fun Walk in my little part of the world, Kingwood, Texas. It was a GORGEOUS day! The route traversed some of the most beautiful greenbelt trails Kingwood has to offer: through the woods and along the lakeshore. The ladies who organized this inaugural walk did a great job, as there were refreshments and vendor booths and even a bounce house for the kids afterwards. And all for a great cause: The Avon Foundation for Women (more info, below.) The Pink Ribbon Shop is planning to partner with the KingwooDDivas for next year's walk -- hoping for an even bigger turnout = even more $$$ for Avon's Walk for Breast Cancer.

As I mentioned in a previous post, the organizers asked me to speak before the walk. It may not seem like much for some of you out there who are accustomed to speaking in public as a crusader for the breast cancer awareness cause, but it was huge to me! I think it went well, except for the fact that I was up late and had a house full of teenagers, AND I was sick with allergy/sinus issues and had NEARLY LOST MY VOICE the night before the walk! I mean really, what are the odds? I am hardly ever sick like this! Anyway, they say God works in mysterious ways, right? So the morning of the walk my voice was a little better, but definitely still very hoarse -- I didn't sound like me at all! Also, the Diva-mobile of sort that I was supposed to stand on/in to speak, wouldn't start that morning, so I would be speaking at ground level in front of the walk participants. OK, no big deal, it was a really small crowd anyway, since it was the "1st annual" walk of its kind. And with the organizers trying to keep costs down as much possible, there was no microphone, only a megaphone with a handheld talkie-into-thingy. Not what I expected, but hey, it'll work.

I had been thinking of "the talk" for a couple weeks, so I had an idea of what kinds of things I wanted to touch on and focus on, but I didn't put pen to paper (or rather, fingers to keyboard) until Thursday night. I'm a last minute kinda gal! I don't recommend being that way, by the way. I really didn't have any trouble, though, because as I said I had been working on it in my head for some time. Danny proofed and tweaked a couple things with me. Then Friday night he asked if I had memorized it! I was like, "NO!" It never even occurred to me to memorize the whole thing. I thought I could handle not "reading" the speech -- alternating looking up at the people with glancing at my notes. He said he would have memorized it ... which got me thinking that I would probably look stupid holding my printed notes in front of me. Great, I was going to look dumb! Way to go, Kim. Oh well it was too late to cram speech memorization before the next morning. It was going to be what it was going to be!

Some background information about the walk ... The KingwooDDivas, a team made up of a group of local women, will be walking in the Avon Walk for Breast Cancer (Houston) April 21-22. The Walk Like a Diva walk was a fundraiser for the KingwooDDivas team, so proceeds from from the Diva walk ultimately benefits the Avon Foundation for Women, who then distributes funds via their grant process to local organizations for awareness and education, screening and diagnosis, access to treatment, support services and scientific research. If you're interested, you can read more about the Avon walks here: http://www.avonwalk.org/.

I had Danny video the talk, mostly for my own use, but afterwards I felt really good about it and received some positive feedback and thought I might post the video to this blog, or maybe even link to it from our site and/or Facebook page. But after seeing it ... well ... I wasn't happy with the way I looked or sounded! I was hoarse and still sick (and fairly well-medicated, I might add, with anti-histamine, anti-inflammatory and sinus med) and I sounded like a MAN. I guess it's common that people who don't often speak in public aren't used to the way they sound, sick or not sick, right? Anyhoo ... I was pleased with the substance/content of the talk, just not the communication of it by me. Also, it was a little breezy and there was kid noise, and let's face it, the megaphone didn't make for great-sounding audio. Plus my (new) friend and team leader / walk organizer Amanda held the mouthpiece for me (because remember, I had to hold my notes because I hadn't memorized my talk,) close to my face so it would work its best, so even the visual of me talking is obstructed. Sighhhhhh.

Then I had the ambitious idea that I would make a slide show of all the walk pictures and make a new audio of my talk to play during said slide show. But the way I am still suffering with allergy/sinus junk, and the way my voice still sounds, it looks as though I am not going to be "sounding like myself again" for weeks, maybe! Plus the project itself would take time. I don't have a staff of folks who can put something like that together for me! I definitely didn't want to wait that long to get this out for those who missed it -- which is a LOT of people, being that the event was new and small-ish.

So here it is ... the "transcript" of the pre-walk talk I gave at Saturday's Walk Like a Diva 5K Family Fun Walk. Enjoy!

Good morning! I’d like to tell you a little about myself:
I’m a cat lover, I love to travel, I love taking pictures, I love nature, and I
love to hike and see places you just can’t see from a car window. I’m a
fan of any team or group my kids are in, and I’m a Saints fan. I like
windchimes, sunsets and waterfalls. I like to run and hug and bike and eat
out. I read a lot.

I’ve sold shoes, bagged groceries, managed a medical office, worked as a
labor delivery nurse and run my own business.

I am a mom of 4, grandmother of 3, a wife, daughter, sister, aunt,
daughter-in-law, mother-in-law and friend. I’m a dance mom, sports mom,
and band mom. I’m a taxi driver for my own children.

And I am also a breast cancer survivor.

At age 32, with a 12 year-old, 2 year-old and 6-month old, I had never even
thought about breast cancer. It was something that other, older women got. I was healthy and young and busy. I worked full time. I had 3 kids! Sure, I knew about breast self exams, but I didn’t do them regularly. But like too many, like way too many, young women these days, I had breast cancer.

It can happen to anyone. It can happen no matter how old or young you are. It can happen no matter how physically fit or active you are. Rich or poor. Man or woman. Skinny or not-so-skinny. It can happen whether or not cancer runs in your family.

It can happen to YOU!

I have to live with the “what if” questions such as “What if I would have examined myself regularly before my cancer started causing me pain? What if I had caught it before it had spread to my lymph nodes? But dwelling on the “what ifs” served no useful purpose for my immediate situation. I had to move on! I focused on doing everything I could to get the cancer out of my body as quickly and efficiently as medically possible. I underwent aggressive surgery, chemotherapy, and radiation treatments. I wanted to – I needed to -- put it behind me and get on with my life.

That was 12 years ago! I’m still here! And I’m here to say that there. is. hope. Sure, I’ve had some tough times. My cancer hasn’t been “in remission” all these years. In fact, in 2006, it returned as stage IV, metastatic breast cancer, having spread to my bones and lungs. Whether you’re newly diagnosed, or a long term survivor, or even if you have a friend or family member with breast cancer, know that there is hope.

Here’s some of what I’ve accomplished since being diagnosed: I’ve had another child – finally got my boy! -- yes, it’s possible. I’ve hiked to waterfalls and witnessed sunsets from mountain tops and ocean shores. I’ve run 2 half-marathons (which I like to think of as one whole marathon!) I’ve started my own business. I’ve tirelessly photographed my children’s events – okay maybe not tirelessly – they wear me out! But I want you to know that there is hope to keep going, to keep living, and to living longer, even with breast cancer.

Today I am one of approximately 200,000 women in the U.S. living with stage IV breast cancer. Six years ago when I was told that my cancer had spread, we thought that surely my time was up. But it wasn’t! Today, my treatment includes drugs that didn’t exist 12 years ago, or even 6 years ago. I wouldn’t be here today if it weren’t for the major progress cancer research has made in the last decade. Today, women with stage IV breast cancer, like me, are leading fuller lives and living longer than ever
before. It’s like we’re living with a chronic disease as opposed to being issued an immediate death sentence.

There is hope -- because of events like these. And because of people like you, helping fund the fight, to find a cure. It’s making a difference! I am living proof that it is making a difference! So I thank you, all of you! My family thanks you! Because you are here, I am still here, and so are many others.

Busy week!!!

Very busy week this week! A whopping 60+ new products are being introduced @ The Pink Ribbon Shop, which is quite a labor intensive task. Several weeks ago, Cookie the cat showed up in our back yard, clearly expecting, and stole our hearts. On March 2nd, we welcomed 3 new additions to our family: kittens Tigger, Finn & Tex. Adorable. Needy. I volunteered to provide a crock pot of soup for our church's Lenten service Wednesday night, so need to grocery shop and of course cook the soup. On Thursday, I'm having a cleaning lady (first time in about 4 months) come clean my house, which means I've had to nag/yell/scream at my kids to help straighten up in the house (their messes, that is) so that Maria can clean it. My 2nd daughter, Christa, turned 15 last week and is having a party at our house Friday night (pray for us!) It will be an accomplishment if we can keep the house guest-worthy through Friday evening, after which it will probably be a mess again after having 15-20 teenagers over. Plus all the party food/snacks need to be prepared (The birthday girl has special requests, after all!) AND, Saturday morning our family is participating in a 5K Family Fun Walk to support a local Avon Walk for Breast Cancer team, the KingwooDDivas. For the first time ever, I will be speaking (in public) about my breast cancer journey (pray for me!) It's pretty lame that I am nervous about this event, considering it need only be 3-5 minutes long, but public speaking is just something that I have no experience in. I have some ideas on what I will say, but nothing definite yet ... clearly I will have to work on that before Saturday! It will be a small crowd, so perhaps a good way to get my feet wet. I've never thought of myself and my story as "inspirational" as some people say. I'm just a busy mom who happens to have breast cancer. Doing everything in my power to stick around for as long as possible, although it's really out of my hands. To me, it's only by the grace of God that I am still alive to tell my story. It's really nothing I've done. I've been blessed with a great family, a great doctor and treatment facility (MD Anderson,) and a Maker who is evidently not finished with me yet!

Cancer-wise, I'm doing pretty good. At least I think I am. I find that as long as I live a sedentary, inactive lifestyle, I feel good ... which sucks in SO many ways, but I'm not in the mood to complain today, so I won't! Next scans are on April 11th and doc visit is the following week for results. Hoping and praying for good results (regression/disappearance of tumors, or at the very least, no growth) so I won't need to move on to harsher chemo. Liking my hair these days! Would like to keep it awhile longer! More prayers, please!

Thanks for reading -- would love to hear from some of you!

Kim

Pink Ribbons in the News

Many of you may have heard that Komen has made the news with some not-so-great happenings. I'm certainly no expert on the latest events, and I don't, in the least bit, claim to have all of the information, but here goes ... I'm going to give my opinion on it anyway!

It is my understanding that the Komen foundation stopped providing funding to Planned Parenthood, pending the outcome of a congressional investigation into Planned Parenthood's alleged misuse of federal & state funding, among other issues such as statutory rape cover ups, sex trafficking, and more. I don't know the details of said investigation, other than what I read here: http://www.lifenews.com/2011/09/27/congress-to-investigate-planned-parenthood-abortion-business/, but if Congress has determined that there has been wrongdoing worthy of launching an investigation, clearly they have some evidence of such.

It is my opinion that Komen has the RESPONSIBILITY to its DONORS to make sure that the money they are giving to Planned Parenthood is absolutely going to breast cancer-related services, and NOT ANYTHING ELSE. People don't donate to Komen hoping to help out Planned Parenthood's agenda -- they donate to Komen because they want to support breast cancer research and breast cancer patient services. As Komen is in the business of soliciting and receiving donations, then donating to worthy organizations via their grant process, they need to be held accountable that the organizations to which they grant monies are indeed using the funds for breast cancer services and/or research. I believe they did the prudent thing by halting funding to Planned Parenthood pending the investigation's outcome. And then they reversed their decision...

According to Komen's statement on 2/3/12 (//ww5.komen.org/KomenNewsArticle.aspx?id=19327354148) politics "has no place" in their grant process. The fact that they reversed their decision to halt funding to Planned Parenthood tells me that clearly, politics has taken a huge role in their decision-making process. It was Komen who, after receiving negative press about the Planned Parenthood de-funding decision, decided that, congressional investigation or not, they would continue to fund PP: In my opinion, a politically-driven shirking of their responsibility to their donors -- in the name of politics.

That is all I have today! Back soon with a cancer update.

Great-ish news!

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

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.