Monday, September 29, 2014

It's PINK Time!

Pinktober is upon us. Well, not quite yet, but it may as well be. I have already seen posts about making "boob" cookies, and pink-coated candy apples. Side note: eating a bunch of refined sugar is not exactly a great prevention behavior. It has become a holiday where there is money to be made selling trinkets.  I absolutely appreciate the use of symbols (like the pink ribbon) to show support and solidarity.  I have been on the receiving end of such support and was touched beyond belief.  However, much of Pink marketing is more about making money that does not necessarily go to research towards a cure or services for breast cancer patients. 

I belong to a support group with almost 900 women with metastatic breast cancer. We all know that early detection does not save 30% of lives. Our group's initial diagnoses run the gamut from stage 0 to III, with a fair amount of initial diagnoses of stage IV. Mammography is not great at detecting the fast growing, aggressive cancers that tend to pop up between screenings. Breast cancer in the breast is not fatal; its spread to bones and vital organs is. Almost one in three people with breast cancer will go on to have metastatic breast cancer, and no one knows why or in whom this will happen. It happened to me.

Breast cancer is not the "easy, curable" cancer (if only detected early enough) that Pink campaigns portray it to be. Less than 5% of funding for breast cancer research goes to solving the fatal riddle of metastasis. This October, think about which causes you support financially. Think about where the money is going from your race entry or t-shirt purchase. Choose an organization like and give directly. METAvivor devotes all monies raised to metastatic breast cancer research grants.

Here in Astoria, our most proud landmark, the Astoria Column, will be lit up pink starting on October 1st. September is Childhood Cancer Awareness Month, whose color is gold. Why was it not honored with a Column bathed in gold?  Many families in our community have been tragically impacted by childhood cancer. In fact September is also Ovarian Cancer Awareness Month, but I think very few people know that. It is unpopular and perceived as negative not to get behind popular "causes" like PINK, but I choose to share some truths and hope to redirect some focus to the UNpretty side of breast cancer, in hope that more lifesaving research will happen.

Tuesday, September 9, 2014

Zombie state

          Towards the end of my fifth cycle of six I am experiencing the cumulative fatigue that I remember from last time, though this time seems more extreme.  Which I don't really get since I am only on one chemo drug.  Maybe Taxotere's cumulative effects are building from the six doses I had two years ago.  Lifetime accumulation... Just saying I'm tired doesn't really begin to describe it.  One of the women in my online support group described it better than I can and said we were welcome to share, so here is the most accurate description I have read or heard:

I have a few words to say about being tired.
After over five years of chemotherapy, fatigue is becoming a constant companion. While some drugs were worse on me than others, I have needed more sleep and it takes less activity to make me tired. Pre-cancer, I exercised one to two hours daily. Now I exercise 2-3 times a week on a good week, and not at all on others. I sleep 10-13hrs every night (more after chemotherapy, a bit less as it leaves my body). I do normal activities but need more frequent rest breaks. If I exercise (ride my bike, walk or take an aerobics class), that is pretty much all I do that day.
Chemotherapy fatigue is not amenable to rest. I mean, resting does not bring enough recovery to become fully physically active again. Some therapies cause outright exhaustion to the extent that I felt like a “zombie” all day. Others, who are in remission, may not ever get rid of the reduced energy and tiredness, even years after treatments have ended. Long term medications like femara and tamoxifen aggravate fatigue and cause joint pain. So even survivors are left with energy deficits. As we age, the rate of cell reproduction declines. I suspect that this is partially the reason we are so tired. Chemotherapy itself kills off healthy cells and it also accelerates aging overall.
Exercise is an oft-repeated remedy for tiredness. In addition, it has proven health benefits, including maintaining a higher rate of cell replication, heart health, aerobic capacity, strength, flexibility and balance. I know this to be true. As a former avid exercise enthusiast, a good brisk walk after work or a long car ride revived my energy. Recent studies have indicated that exercise can delay or inhibit 
cancer from metastasizing to other areas of the body.
Unfortunately, if I choose to exercise, I cannot do the housework or the yard work afterwards. I feel especially sorry for young mothers with cancer. How do they keep up with an active toddler who rises at 6 a.m. after waking her parents three times during the night?
My point is that calling it fatigue or tiredness is inaccurate if it has resulted from cancer and chemotherapy. It is not “normal” fatigue. It happens without any physical activity at all. It does not disappear after a good nights sleep. It overwhelms unpredictably (I need sleep now!). If a cancer patient pushes herself to keep up in spite of it, she may spend 2-3 days in bed recovering.
We could use a better word for it; we could use better education for the oncology and research professions; we could really use a useful remedy and we would be thrilled with a treatment that does not cause fatigue. 

        Monday I have the last (for now, and if scans look good) infusion session with the chemo agent Taxotere, which is the culprit in my current zombie state.  Six or so weeks after that I may be a little less dazed and confused.  




Tuesday, September 2, 2014

Another Perspective: a really good Pink story

You know, the pink ribbon thing has its detractors, for good reason.  And if you read the previous post you would conclude I am one of them.  There are two sides to every coin, however, and when love and good intention come into play I remember that (as I tell my husband all the time) everything is complex and nothing is as black and white as we want it to be.  I am remembering one of the sweetest, kindest things that has ever happened to me, and it involved, yes, a bunch of pink ribbons.

In June I graduated from my year-long medical assisting certificate program.  Just before school ended I was diagnosed with metastatic disease.  I finished finals while feeling the lovely (not) effects of the first chemo, and waffled about walking with my classmates at graduation, which was also my birthday.  I decided to power through the graduation figuring, if nothing else, I would at least try to seem awake and not completely fallen apart for my kids.

I went to school with some amazing women who, unlike me, did full time school, full time work, had young children at home, and muddled through various other challenges to make it to school each day and get the thing done.  Shannon is one of these incredible women.  She's  a single mom, worked a full time job, and completed the certificate.  As I walked into the room where we were all gathered to line up and walk into the theater, I noticed that many of my classmates were wearing little pink ribbons pinned  on their graduation gowns.  Shannon had made them, and was running around making sure all of us had one pinned on.  It dawned on me that it was June and not October, and that the pink ribbons were a specific and not a general statement, and that the statement was a show of solidarity and support for me.

I was completely stunned, honored, and proud that night to wear my ribbon and to accept the support of this wildly quirky and diverse group.  I will never forget this, and for this reason the pink ribbon has a very special place in my heart.