Just five years ago, I had cradle cap. At 55. Medically speaking, those itchy sores on my scalp were known as folliculitis—yet another new vocabulary word for my growing lexicon of cancer-related words. Nurses recommended an over-the-counter salve to treat this infection of the hair follicles. A woman doctor I never saw again wrote me two prescriptions, one of them for a medicated shampoo, which another woman in the chemo room said had worked well for her. (Nothing helped; after treatment, I saw a dermatologist.)
The perhaps-cause for the folliculitis was that the scalp could not breathe normally after hair loss. I kept my head covered most of the time because I was cold, though the woman in the recliner next to me claimed she wore her hat only outside. (I envied her moxie and her beauty—she kept her short wig stuffed in her coat pocket, and looked stunning without it.)
I’d decided against the take-home shots to boost red blood cell production. The alternative was a shot of Aranesp at the end of chemo, administered every third week. Linda called the drug “liquid fire.” It hurt, because the molecules were so large, and I could feel the drug traveling up my arm. Those large molecules meant that Linda could not give me the dosage quickly. Still, I considered it better than three separate shots over the next three days.
The next day was Saturday. Thinking ahead, I obsessed over church attendance, writing, Church is a problem, or I’m a problem at church. People are very kind, but it’s emotionally wearying to put on a Nice Sick Person face and tone. And one doesn’t wish to lie indefinitely, but how much reality can people take? . . . How to handle the emotional overload of church? It’s the only group thing I need to face. I’d like to do this with kindness and integrity both, but it’s wearing. . . To not go just isolates me from the spiritual nurture I need. . . But the truth is, I don’t feel very well, and my gut still hurts, and this is just round 2A. If this is cumulative, I don’t see how I will survive. . . . I’m not good company, but should I be left alone? I’m also not good company for me, with gloomy thoughts and fears.
I was also thinking about the biblical text for that Sunday, the temptation of Jesus in the wilderness. “If you are God,” the tempter says as Jesus ends his forty-day fast in the wilderness, “command these stones to become bread.” Later in the Gospel, Jesus asks a crowd of people, “Which of you, if your son asks for bread, will give him a stone?” I wrote, I’m pondering about being given stones instead of bread, or the temptation of Jesus to make the stones become bread. Seems the other option is to get stronger teeth. Here’s a hard thing to chew—better to be tough.
Having no answer for my spiritual problems, I turned to practical ones. Water had begun to taste bad, somehow both metallic and like warm spit. I’d been advised to use plastic utensils when my food began tasting like metal, but what was I to do about water?
At breakfast the next Friday morning, I dawdled over my egg sandwich and got teary, not wanting to go to chemo. With a week off, I’d just started feeling human again, a process that would be repeated each session. I felt as if I were one of those inflatable plastic, round-bottomed figures that kids punch over and watch bounce back up. I didn’t want to spend most of the day, which promised a cloudless blue sky and sunshine, cooped up in a small room with no windows.
“What’s the hardest part?” Ben, my driver that day, asked.
But I couldn’t isolate one worst part. I kept moving slowly, and arrived about fifteen minutes late.
The good news was that my numbers had rebounded with the Aranesp, and I did not need another injection of “liquid fire.” My numbers never got low enough to make me miss a treatment. Rebekah, my priest, had promised specific prayers; it never occurred to me to pray for specifics, such as “Lord, let my cradle cap go away enough so that I can wear my wig.” I was praying for three qualities: grace, strength, and courage, having determined that if I had those three, I could move forward, with or without my wig. Once, when a friend and I were speaking of prayer, she told me that she thought of prayer as making a space for grace—which always surrounds us—to enter. So prayer, I wrote later, reflecting on her ideas, is like the first spring opening of all the closed-up windows and doors of winter, letting in light and fresh air, blowing out the stale air of winter.
Even when people tried to be helpful, they sometimes were not. I received one card expressing the hope that I could see the hidden blessings in this experience. I wrote in response, I want to yell and scream and throw fits, say over-the-top stuff such as, Can you even imagine a hurt so deep, a loss so profound, that cards only exacerbate it? I want to throw the idea of hidden blessings in her teeth. I recognize that there’s still anguish and bitterness of spirit over what I’ve lost. And then I wondered, thinking of a generous gift of help I’d refused, What flow of grace might I be damming up with my stubborn insistence on independence?
Friends advised me to begin using a special mouthwash with baking soda to prevent mouth sores, which many people get during chemo. I reacted in my usual fashion: I didn’t want to know. I wanted the process to unfold, to deal with problems as they occurred, not spend my days watching for the catastrophes I’d heard might befall me. I didn’t feel I had the energy to spare on potential horrors. I can only continue to believe in my body’s strength, I wrote, and do what I can to support it. Maybe I’ll get mouth sores, but until I do, I’ll live as close to normal as I can get.
Chemo was teaching me about energy management. I became very sensitive to the effect that various people and events had on my energy levels. Were they life-bringers, or did they simply suck life out of me? My waking hours were decreasing; I generally took two one-hour-or-more naps a day, then slept another eight to ten hours at night. I needed what energy I had for work, for walking, and for home care.
When I next saw my doctor, I asked him about recent FDA warnings about some of the drugs I was taking, notably Aranesp, being carcinogenic. He didn’t bat an eye. “We’ve known this for some time. It’s a matter of monitoring the dosage carefully.” Later I wrote, He could be Jim Jones, handing out poison Kool-aid as if it were the Eucharist. But he’s not been flapped about anything yet, and he wears that official white coat, and he has such kind brown eyes that it must be okay.
I also asked him about the likelihood of recurrence.
“I can’t promise you it won’t come back,” he told me. “But if it does, we’ll be here for you. There’s no point in living negatively. We’ve done optimal debulking (doctor-speak for removing all the mass), and you’ve been able to tolerate the highest dosages of chemo for at least half of the regimen. That puts you in the best-case group. The statistics are bad, but that’s because they lump all the ovarian cancer patients together, rather than taking these factors into account. It may never come back, and then we’ll just have many pleasant visits over the years.”
Single all my life, I had finally gotten the equivalent of “till death do us part,” but it was from my oncologist, and it was my death under consideration.