Before and Aftereffects
For weeks I’d been responding to email by typing with one hand; the other held the magnifying glass from my compact edition of the Oxford English Dictionary so I could make out what I was seeing. I’d not been able to read a book or my beloved New Yorker and New York Times for a month, but by the end of December the world was clear and whole again. Dr. S, my eye surgeon, removed the bandage contact lens from my right eye and the three stitches that remained. D took me in for that appointment, holding tight to my hand while marveling at the steadiness of the surgeon’s.
Winter turned to spring. I was regaining my strength after the two surgeries, adjusting to the vagaries of my hormone-replacement medication, and traveling to the lab for regular blood work to check my levels of TSH (thyroid-stimulating hormone). I was also back at work.
Since I had decided to proceed with the radioactive Iodine-131 treatment, I had to prepare myself by becoming completely hypothyroid. This meant that for two weeks, I stopped taking Synthroid and instead took an alternate hormone therapy. After that weaning process, I had to stop cold, taking no hormone replacement medication at all. In addition, I went on a highly restricted diet to ensure that there were no traces of iodine in my system.
These are some of the foods I had to avoid:
- Iodized salt and sea salt
- Seafood and sea products, and foods containing sea-based additives
- Dairy products
- Commercial bakery products
- Beans, soybeans, and soy products
I could eat fresh meats in limited portions (no more than five ounces per day), grains, cereals, and rice.
I could also enjoy fresh fruits and vegetables (except, for some reason, potato skins); unsalted nuts and unsalted nut butters; sugar, jelly, and maple syrup; vegetable oils; and, surprisingly, sodas, coffee, tea, beer, wine, and other alcohol. Homemade foods were permitted, and the Thyroid Cancer Survivors’ cookbook offered a host of recipes, including those for baking bread without iodized salt.
I hope that no one reading this ever has to go through this ordeal. The last two weeks before taking the radioactive pill were agony. I had absolutely no energy, my thinking was fuzzy, and I hated the limited diet. On the upside, my former boyfriend loved to bake. He baked a delicious bread for me using a recipe from the cookbook. In fact, several of the recipes I tried were so good that I still make one of them to this day, happily adding salt. I even included one of them (for Greek Grilled Chicken) in the “Food for Thought” section of the blog.
I was so lethargic and logy by the time it came to get to the Clinic to take the nuclear pill, D basically had to drag me there.
I felt a certain amount of trepidation, walking into the nuclear medicine section of the Clinic. I put on a gown and someone escorted me to a room at the end of a long corridor. I sat behind a screen while a technician pulled out what looked like a small safe deposit box. Inside was the pill I was to swallow. I was warned not to let it linger in my mouth; I was to get it down as quickly as I could. I was afraid my throat would close up and I’d struggle to swallow the pill, but I managed to get it down. And that was that.
Here’s an excerpt from an email I wrote on May 21, 2007:
Please forgive another mass email, but my energy level is pretty low, and this is easier for me right now.…
I do have good news: today’s scan (done with a gamma camera for you science buffs) indicates that the thyroid cancer did not spread elsewhere! I did, however, need to have the therapeutic dose of radioactive iodine, so I’m afraid I’ll be lollygagging around the house until Thursday. [Apparently, this was the date when I could resume my regular medication and a normal diet.] My doctor is extremely pleased with the way things are progressing, and especially pleased that she insisted on such an aggressive protocol.
It is now almost five years since my cancer treatment. Periodic ultrasounds of my neck show that the cancer has not returned. Other than having to use eye drops several times a day, I’ve not had any problems with my right eye. Or my left one, for that matter.
I’m reading a beautifully written book, a “biography of cancer” by oncologist Siddhartha Mukherjee called The Emperor of All Maladies. He says that all patients begin as storytellers, as narrators of suffering. They are travelers who have visited the “kingdom of the ill.” In the days following my eye cancer diagnosis, I attempted to write an essay called “My Right Eye.” I knew how I wanted it to begin—with the nightmare I’d had as a baby that you’ll recall is the first installment in this series. But I couldn’t get much farther than cursory research into conjunctival sarcoma. I was frightened, busy with medical appointments, and far, far too close to what was happening to me to really be able to narrate my suffering. That essay lay unfinished for years, until the daily blogging challenge on BlogHer presented me with an opportunity to take it up again. And that is how I ended up writing this series.
A brief note about the process: With the exception of the first installment, which I edited fairly extensively from that aborted essay, I wrote every part in this series directly on WordPress’ editor mode. I tried writing it out in Word first, but that seemed an impediment; I found it easier to just type and write, type and write, as I went along here in WordPress. I’d re-read a draft before posting, doing surface edits or rearranging a sentence or paragraph, but what you’ve been reading is pretty close to how it just came out of me. No one read any drafts before I hit “publish.” I did refer to old notes and emails from the period—I’m so glad I kept them! But I wish I could remember in greater detail all I went through. I guess the mind knows what it can best manage to hold on to.
In the course of my writing, I learned a few things. Most distressingly, I learned that the woman I had called at the suggestion of my eye surgeon—the patient of his who’d had the same eye cancer surgery as me, died in 2010. I came across her work email in my files; when I Googled her name and the name of her company, I found her obituary. Although the cause of death wasn’t stated, she apparently had been in hospice; the family had requested that in lieu of flowers, a memorial contribution be made to a palliative care center. L was so kind and reassuring the one time I spoke with her—upbeat, optimistic, and encouraging. She was one of many flowers that I found along the rocky path I walked in the months from November 2006 through May 2007.
In researching the series, I discovered that there might be an alternative for Synthroid that no doctor had ever told me about—desiccated thyroid, an old therapy made from porcine thyroid glands. There seems to be a lot of controversy surrounding it, but then there are doubts about the efficacy of the synthetic drug that I’ve taken for nearly six years. It bears looking into, at the very least.
A comment sent by a reader reminded me about a book by television journalist Betty Rollin that helped me when I was going through my first medical crisis—the tumor and cyst leading to my oophorectomy in 1977. After I replied with the name of the book, First, You Cry, it occurred to me to try to locate Betty, to thank her for sharing the story that helped me so much. I’m fairly relentless when it comes to research; I found a Manhattan telephone number that I thought could be hers. When I dialed it, a woman answered. I asked if I could please speak with Betty Rollin, and to my delight, it was she on the other end of the line. She told me about her most recent book, Here’s the Bright Side: Of Failure, Fear, Cancer, Divorce, and Other Bum Raps, to let me know that there is a flip side to the terrible things we endure. After we got off the phone, I went to the library and checked it out. I’m reading it now. Here’s something for us all to think about:
I woke up one morning and realized I was happy. This struck me as weird. Not that I didn’t have all kinds of things to be happy about—love, work, good health, enough money, the usual happy-making stuff. The weird part is, when I thought about it, I realized that the source of my happiness was of all things, cancer—that cancer had everything to do with how good the good parts of my life were. …It turns out there is often … an astonishingly bright side within darkness.…There are even studies, scientific studies (!) that show that people often say they have benefited from the terrible things that have happened to them.
Having lived the life I’ve lived since one erroneous cancer diagnosis and one all too accurate cancer diagnosis, I know this is true. At midlife, remarried to a wonderful man, I’m happier than I’ve ever been.
There’s a dividing line between health and cancer. (Or between divorce and remarriage, or any other dichotomy you can think of.) In my case, I found that there’s a lot to be said for thinking you’re going to die—it makes you appreciate each bright, pulsing, living moment that comes after that dividing line. The poet Wallace Stevens wrote that “death is the mother of beauty.” I understood his meaning in the abstract when I first read “Sunday Morning.” I even wrote my own poem about it, conflating my uncle’s death from cancer with my father’s death from heart disease. But now I have lived it. Now I really get it.
Life is beautiful.
The Complete Series:
Part 1: The Baby’s Nightmare
Part 2: The Nightmare Returns
Part 3: Room 101 and the Masquerading Marauder
Part 4: The Eye as Metaphor
Part 5: The Back Story
Part 6: It’s Nature’s Way
Part 7: Help From the Man on the Street
Part 8: A DES Daughter?
Part 9: Speak, Memory
Part 10: The Needle and the Damage Done
Part 11: Can I Get a Discount?
Part 12: A Call During Dinner
Part 13: First There is a Cancer, Then There is no Cancer, Then There Is
Part 14: Through a Glass, Far Too Brightly
Part 15: Anatomy of an Eye Operation
Part 16: At Peace
Part 17: Redux: First There is a Cancer, Then There is no Cancer, Then There Is
Part 18: The Rising Tide of Thyroid Cancer
© 2012 Marci Rich
All rights reserved.