By Sandra Dennis, Deputy General Counsel for Healthcare, the Biotechnology Industry Organization
October is breast cancer awareness month. As a dear friend said to me recently — it’s a whole month? She also despises the whole pink ribbon thing. I didn’t dare mention to her that there’s a breast cancer stamp. While it could suggest a lack of empathy, she was treated for breast cancer several years ago, so she speaks from the perspective of someone who is, or was, a patient. And like her, some patients just want to get it over with and move on with their lives. I have not so decidedly walked away from my disease.
Breast cancer awareness month may be an unwanted reminder for some; for others, it can be a time to celebrate or just contemplate. Just as every cancer is different, every patient is different — and there are so many patients. Cancer mortality rates, including those for breast cancer, have been falling consistently since they peaked in 1991. There are more than two and a half million women living in the U.S. who have been treated for breast cancer. So, many patients do go on living, but it can be complicated. Exactly how does one move on from being treated with a serious disease? This is something I still struggle with.
2010 was my year of living cancerishly: finding it; learning my diagnosis was stage 2A triple negative breast cancer; being treated with surgery, chemotherapy and radiation. It was a roller coaster year–from the elation of being able to keep all of my original body parts and benefiting from advanced medical treatments that prevented me from feeling nauseous and kept my white blood cell count in a healthy range, to feeling defeated on the days I was too exhausted to do — or even think — much at all.
2011 has been a year of transition: recovering from the treatments; going from the wig variety show to super short, chemo-curl hair; learning that I am cancer-free at one year; and trying to get back to “normal” life. Recovery has been an unexpectedly lengthy process, both physically and emotionally. Feeling the effects of fatigue months after treatment ends is very discouraging. There is no guide book for this stage. Right after treatment ends it can feel like being let out of jail with no halfway house. Studies indicate that the most common times of depression for cancer patients are at the time of diagnosis and after treatment ends.
To ward off the blues, I tried many tools: healthful eating, exercise, Chinese herbs, vitamins, yoga, and meditation. I purchased books on healing after cancer, what to do when things fall apart, the Buddhist path, and the science and history of cancer treatment. I really wanted to understand what was going on in my body and why recovery is such a challenge. I read that radiation treatment damages cells, and over time the cancer cells die off, known as “apoptis” or “cell suicide.” It actually takes weeks or months for the cells to die, so the effects of radiation last long after the actual treatment. The treatment also damages healthy cells, and it takes energy for the body to replace them. I read that fatigue is extremely common after treatment, and was surprised to learn that scientists don’t exactly know why.
I’ve come a long way since last winter, when I could barely imagine a day when I would feel good. Physically, I can still get to the top of my game — I can keep up those half my age in my weight training class, and do 108 sun salutations in a room heated to 95 degrees. But the bottom of my game looms large — I need far more sleep than I used to, and travel or a couple of long days at work can send me into fatigue mode. Getting blood from my scarred veins for lab work can be harrowing. I need to wear a compression sleeve when I fly to prevent lymphedema. And some conditions that my body had protected me from for decades descended upon me in the midst of cancer-world and never left.
I’m in the grey area between patient and former patient, wondering how much to forget or remember, whether and how much to immerse myself in the world of breast cancer — advocacy, fundraising, support for others following in my footsteps.
While I have no signs of cancer, I’m at higher than usual risk for another 3 1/2 years. I see one of the doctors on my team about every 6 weeks. My cancer potential is on high alert, like a terrorist watch list with my doctors as the monitors. When you’ve been a cancer patient, mountains can be made out of medical molehills. If you pass out, you go for a brain scan the next day, as I did recently. After a spate of scares like that, I was determined to find out from my oncologist how I will know if a recurrence is emerging. I asked him pointedly what I should look for. His reply: “I think you should look for ways to enjoy life.”
I am, and I do. But I don’t think my life will ever be the same as it was pre-cancer. The experience has changed me, in ways both positive and negative. Has it made me stronger? Maybe. I know I can get through the muck life throws at me, but I also feel more vulnerable. There’s a loss of innocence, of feeling invincible. And there’s just so much more to think about.
As Vietnamese monk and author Thich Nhat Hanh says, once you have had a toothache, you can be happy for your non-toothache. Being alive and cancer free is a beautiful thing, and I am very grateful for my non-cancer.