die from the cancer, not from the treatment for the cancer.”
He responded, “How about you not die at all?” His unexpectedly optimistic question brought a wary smile to my heart. Only from him can I tolerate such syrupy optimism. No one else. His comment was so contrary to the dim prognosis he had given me last December that I must believe all this immunotherapy buzz that has gained such ferocity in the interim has actually given him a real sense of possibility. And when he believes, I can muster the courage to believe, too, just a little.
I went on to inform Dr. A.C. unequivocally, “I don’t want my children to remember me so sick.” He responded, “In this case, they’ll just remember you with acne.”
I would also be going back on a maintenance course of the chemo drug 5-FU, administered every two weeks over a forty-eight-hour period through a pump that one must carry around. I did not want to wear the pump, in part because it’s annoying but mostly because my children and Josh get upset when they see this obvious sign of my illness. Dr. A.C. then proposed something I’d never heard of (at least not in today’s standard of care); since I would be receiving the Erbitux on a weekly basis, he could give me a quick injection of the 5-FU at each infusion as well. That seemed like the perfect solution. I agreed.
I had made my treatment decisions, and I felt good about them. I’m fortunate in having an oncologist who listens to me and allows me to make my own treatment decisions, as frightening as that can be. He is willing to do what is unusual, to try the unorthodox. As he has said, “Just because it’s not typically done doesn’t mean we can’t do it.” And most of all, I love the fact that we follow each other on Instagram, that we allow each other to see other personal parts of our lives, that we talk about our gardening endeavors and our children. I think that the relationship between a patient with metastatic cancer and his or her oncologist should be a special one, unlike any other patient-doctor relationship. Because oncology is all about where life meets death, the relationship should go beyond the medicine and the science; it should be about our mutual humanity. I need to feel that bond with the doctor who will either save my life or, much more likely, walk with me toward the end of my life.
But whatever goodness I felt about my treatment decisions was short-lived. Within a week, my face had developed the expected rash and acne, what my dermatologist called pustules. It’s a disgusting word, yet it so aptly described what was happening on my face. Clindamycin (a topical cream) and doxycycline (an oral antibiotic) quickly brought the rash and acne under control (although my face still looks flushed all the time). My scalp started to itch and grew sore to the touch, a general precursor to hair loss. Sure enough, I started losing hair a few weeks ago. I’ve begun using hair masques to promote more moisture to my scalp and hair in the hope that doing so will mitigate the hair loss.
About a week after my first Erbitux infusion, I developed a floater in my left eye. Everyone gets floaters from time to time, but because of my previous eye surgeries, I’m more prone to them. My previous floaters would always go away after a few days, but this one didn’t. They’ve always been disconcerting to me because they bring to mind the possibility of worsening eyesight and blindness, which for someone with my history is among the greatest of fears. When I was little, I used to call them flies dancing around my field of vision; I had no other way to tell my mother about the dark spot that was there no matter where I looked and even when I closed my eyes.
I also developed a strange, tender lump near the base of my neck, which Dr. A.C. doesn’t think is a brain met, unless my brain has grown out of my skull, but we have no idea what it is. For now, we simply watch it as I push it around with my fingers. I draw little comfort from the fact that my recent brain MRI showed nothing.
But such vain concerns as acne and hair loss, annoying eye floaters and bizarre lumps on my head, and even the