Tuesday, May 26, 2015

My life on Xeloda

The first cycle of Xeloda went swimmingly insofar as I experienced few side effects. However, I did not think it was working. I still felt like I was drowning. The fluid pushing against my heart wall would wake me at night as I struggled awake, gasping for breath. So I asked for more. And I got it.

The first week of cycle 2 was fine. Day 6, I went for my usual 5-mile run/walk (more walking than running now as I was so short of breath) and came back with a 2-inch diameter blister on my right foot, around the toe area. That area was easily bandaged so I went for another 5 miles on Sunday. This time, I was not so lucky. The ball of my left foot turned into a giant blister. So I bandaged that and yes, went out again on Monday. I can see you shaking your head. As I read this, I am shaking my head. Now both feet turned purple and I could not get a shoe on and this was a problem. I was planning to present a paper at a conference in New York and presenting it in slippers is not an option so I called the doctor.

I had to take a break from the Xeloda for the rest of the 2-week cycle.

New York was a blast. I attended the conference, saw my son, ate wonderful food and went to a Broadway show, Something Rotten. I also walked some more blisters into my feet. Bandages and Band-Aids are my friends. I got back on Sunday night so that I could run/walk a 10k on Monday. The nurse had told me I could not race it so I decided to interpret that literally and just take it at a walk/ run pace. I didn’t race it exactly. However, now I really have little skin left on my feet.

Why is treatment for breast cancer still so primitive? There’s an old Bing Crosby song called, Brother, Can You Spare A Dime? Every time I am reminded that I am drowning in this breast cancer tidal wave, I wonder who will spare, not a dime, but a line attached to a life preserver.

In 2012, 521,900 people died of breast cancer. That is 1,430 people every single day and every year that toll rises. When 1,500 people died in the Titanic disaster, laws were changed so that a shipping disaster of that magnitude could be prevented from happening again.

In 2011, Susan G Komen allocated only 15% of its funds to research for breast cancer. That 15% includes all research, not only research into the biology of cancer and treatment. There is no Race for the Cure. What would be the purpose of a giant organization grounded in ending breast cancer if breast cancer actually just ended?

Almost all breast cancer research is aimed at preventing it returning and for all the progress that has been made, it is like holding up your hand and telling the tide to not come in.

When people talk of progress, they are inclined to talk in anecdotes. I am alive because… stories. However, some facts to bear in mind are:

1975: The 5-year survival rate for breast cancer was 75.2%
Now: The 5-year survival rate is 89.2%, but 83% at 10 years and 78% at 15 years which is not statistically different from the 5-year survival rate in 1975, especially if one considers the over-diagnosis and over-treatment now. For African American women, the 5-year survival rate now is only 79%.
In 1975: 30% of patients were diagnosed at Stage III or IV. Staging was not accurate so more women may have been Stage IV at diagnosis.
Now: 13% of patients are diagnosed at Stage III or IV.
The 5-year survival rate for Stage III is now 72% and the 5-year survival rate for Stage IV is now 22%. Both these are lower and far lower than the survival rates of 1975.
As long as survival rates are measured by being alive after 5 years, we will never know if early detection means that we are living longer knowing we have breast cancer or actually living longer.

When women like Sheryl Sandberg (in her book Lean In) write things like her grandmother beat cancer, they reinforce stereotypes that beating cancer is a matter of personal choice. They ignore the desperate need for research to cure breast cancer for those who are initially diagnosed with terminal breast cancer and the 30% who will see the cancer return and become terminal no matter what they do.

No wonder treatment is still so primitive.

Buddy, can you spare a line to save us?


  1. Yup, shaking my head... :) I'm glad you asked for more, that's all the control we seem to have. Here's to you, and more run/walks in your future. Glad you enjoyed New York! And, great write up on the stats! Thanks hon. xo

  2. That whole quality of life thing they talk about seems to be a farce. I was also sifting through statistics the other day, since no one seems to be counted on recurrence - the lack of data does make it hard to really track any changes in statistics, good or bad. Super frustrating.

  3. Lulu, sobering statistics and a heartfelt post. You are right: why does society allow so many deaths from breast cancer? And warrior language doesn't sit well with me. I'm glad you are walking; exercise is a good thing. Sending hugs.