Sunday, March 27, 2011

A gift

On March 27, 2006 I checked into Shady Grove Adventist Hospital for a week of I-131 treatment for thyroid cancer. Days of complete isolation, having my radioactivity measured daily with a Gieger counter, worrying that I would permanently lose my sense of taste (it's a possible side effect), and wondering whether I was elevating my kids' risk of cancer from the residual radiation took a huge psychological toll. I finally worked through enough of the pain and worry to write my cancer story last year, and I am republishing it again for my 5th anniversary.

Four years ago this week, I walked out of hospital after 4 days of isolation, with puffy painful salivary glands and intermittent nausea from the lifesaving -- I hoped -- I-131 (radioactive iodine) treatment for Stage III papillary thyroid cancer. My cancer diagnosis was  a complete surprise, since multiple doctors had for years been telling me that my thyroid was fine, my "levels" were within normal limits, and that there was no need to worry about the growing nodules as the two biopsies were negative. Only after I started having trouble swallowing did I find an endocrinologist that would send me for a surgery consultation, and it was during the complete thyroidectomy that the surgeon recognized the autoimmune disease Hashimoto's Thyroiditis, and cancer that had spread to most of the lymph nodes in my neck. It was very aggressive, and required a higher dose of 1-131 than is usually prescribed.

Hearing the C-word out of a doctor's mouth is one of the worst experiences imaginable. I wasn't even 40 years old. My kids were 6 and 3 years old. I was simultaneously completely numb, and as frightened as I have ever been in my life. Once I got over the fright and the ensuing months of chaos, tests, scans, more tests, treatment, and more tests, I got angry. Angry that my physical symptoms had been dismissed for years as all in my head. Angry that because I was a mother of young children excessive fatigue was "normal." Angry that my inability to lose weight was dismissed as eating too much or not counting calories. Angry that I had to push, to be a bitch, really, to be taken seriously and get the treatment I needed. And furious that there might be other women out there who were treated like shit by the medical establishment just like I was.

Had we waited and watched the nodules, as more than one doctor advised, the cancer would have further metastisized, and my chances of surviving would have plummeted. Had I listened to the doctor that gently suggested that maybe it was postpartum depression (my youngest was 3!) causing my symptoms, it might have required chemotherapy and radiation instead of the less-risky radioactive iodine treatment to kill the tumors. If I had taken the advice of the doctor that told me that my weight gain was because I needed to diet, and to just make an appointment with a nutritionist, I would most likely be a box of ashes right now instead of typing this post. By trusting my instincts and being dissatisfied with the advice and treatment offered, I saved my own life.

There's no moral to this tale. Having these experiences does not make me a better person or any stronger than those who were treated compassionately and received the care they needed promptly. I did learn a few things, though, that I'm more than happy to share:

Trust your instincts. Your body knows when something is wrong. Listen to it. Do your research. Ask the uncomfortable questions. Don't be afraid to fire your doctor; I switched doctors four times in 2 years. Get a second opinion. Demand to be taken seriously. It sucks, but sometimes it's on you to get what you need. Doctors are human beings and they make mistakes all the time. Make it a point to encourage others to fight hard, just like you did.

If you are diagnosed with cancer, get as much information as you can. is an invaluable resource for looking up various types of cancer and getting specific information about stages, treatments, and aftereffects. It has links to advocacy and patient support groups, and should you need it, advice about end-of-life care. Make sure you have a will and a living will, that someone has power of attorney if you're incapacitated, and that you've made your burial or cremation wishes known should it come to that. It's hard to think about those things -- we all want to be survivors -- but you have to, especially if you have children.

And if you survive, appreciate what you've been given. Take steps to live your life the way you want. Slow down. Take some risks. Jump in with your eyes closed once in a while. Things aren't always going to go your way, but hey, at least you're not in a box. I don't go for the "cancer is a gift" bullshit that has been peddled by people like Deepak Chopra, among others, but if you make it through alive it does give you a unique perspective on life's trials. Your life is the gift, and you have every right to stop and savor it. Musician and brain cancer victim Warren Zevon said it exactly right: "Enjoy every sandwich." I plan to enjoy every sandwich for a long time.

(Originally posted in April, 2010)