R.I.P. Coffee
I gave up coffee. Temporarily, I hope.
But first, due to popular demand, here’s an overview of my status and treatment plan:
Infusions: TX Oncology delivered my 12th infusion yesterday. I started these treatments in June, 2022. Seems like yesterday and forever ago. The final infusion is scheduled for June 9, 2023.
Scans: The CT scan from early March showed no new, suspicious lesions. I believe I’ll receive a post treatment scan after my final infusion.
Follow-up: Cancer cells are sneaky and fly under the radar, so I’ll be scanned every 6 months for a couple years. If those scans are clear, the frequency will drop to 1 every year. I will also continue to visit the dermatologist quarterly. Writing this makes me pause, because contemplating so far into the future carries a certain amount of psychological risk for me. Nothing about this experience has been predictable, and when I lock into a narrative based on my hopes, I am often disappointed. Instead of planning on some thing I have little control over, I’m trying to be joyful, or at least more comfortable living without guarantees. Riding the wave of impermanence.
I’m sick with Nivolumab-induced colitis
Before I could skate off into side-effect-free remission, in early March I was jolted into a brand-new-to-me side effect: inflammation of my colon.
GI issues are one of multiple common side effects of immunotherapy as the body’s unleashed immune system starts attacking healthy cells. The mechanism of Nivolumab (the immunotherapy drug I’m receiving) is to turn off the immune checkpoints. From the National Cancer Institute:
Immune checkpoints are a normal part of the immune system. Their role is to prevent an immune response from being so strong that it destroys healthy cells in the body.
Immune checkpoints engage when proteins on the surface of immune cells called T cells recognize and bind to partner proteins on other cells, such as some tumor cells. These proteins are called immune checkpoint proteins. When the checkpoint and partner proteins bind together, they send an “off” signal to the T cells. This can prevent the immune system from destroying the cancer.
Immunotherapy drugs called immune checkpoint inhibitors work by blocking checkpoint proteins from binding with their partner proteins. This prevents the “off” signal from being sent, allowing the T cells to kill cancer cells.
Side effects can turn up any time during treatment and may continue for months after treatment as the body clears the drug. I was aware of this risk but was unprepared for the awful months-long slog of trying to find the correct antidote. The term “out of balance” took on new meaning. A particularly poignant moment was stepping on the scale and seeing 107 pounds (48.5 kg). For context, 120 lbs (54.4 kg) is a comfortable weight for me. I love food and have spent years trying to be thinner. Now I’m struggling to gain weight and, more important, strength and vitality.
Working with my doctor, we ruled out illness, food sensitivities, and infection. Now, I’m taking a corticosteroid that allegedly limits its scope to the small and large intestines. This is important, as systemic steroids will counteract the effect of the immunotherapy. I’m slowly starting to feel better. Still, I weighed in this morning at 107.8 (48.8 kg), so I have a ways to go.
A quick aside on the pharmaceutical front. The fancy drug I’m taking is not inexpensive. The generic version, uncovered by insurance, costs $900/month. Insurance does cover the brand version at $2139. There was a slight delay in procuring the brand drug, so we sprang for one $30 generic pill to get me started. What a time to be alive.
I am of the nature to have ill health. I cannot escape having ill health.
I’m feeling quite vulnerable these days. I’m hopeful that I will overcome this setback. At the same time, I am learning, yet again, that I am not in control and that “sickness is a universal phenomenon.” A favorite quotation from Fear reads:
If we are in normal good health, we may think getting sick is for other people. We look down on others, saying they’re always getting sick from nothing at all; they have to take medicine and receive massage all the time. We think we’re not like them.
I see myself in those words, and this makes me uncomfortable and ashamed as I remember how I looked down on others, my late mother especially. I am sorry for that.
I want to say that when I enjoyed better health I made “good use of our time and energy to do what’s needed and not be carried away by senseless pursuits that can destroy our bodies and minds.” (from Fear)
I wonder, though, about my arrogance over the years. How often have I minimized the importance of deep connections with people and opted instead for overwork and then relaxing with a screen.
Hakuin’s Baby
How can I live beyond the job and off the yoga mat or meditation chair? Opportunities abound in everyday life!
I subscribe to
and was struck by one of her Dear Zen columns:
She tells the story of Hakuin:
There is a story that when Zen Master Hakuin was accused of fathering an illegitimate child, he took the baby in without hesitation or question and raised it as his own.
"Oh, is that so?" was his only response upon being accused and having the baby thrust into his arms. He then proceeded to care for the child, begging for food for it and never trying to raise his own defense or refute the claims, which were, of course, false.
When the family of the child returned, admitting that the baby was not his, he simply responded again with, "Oh, is that so?" and returned the child.
Beliefs and reading and reflection and meditation are essential, fine, good. But what do I do in the heat of the moment, of which there are many? I think the story of Hakuin’s Baby resonates with me as a guide to quietly do what needs to be done.
I remember asking the oncology nurse briefing me on my first go-round with Chemotherapy if I would have to give up coffee, I was relieved when she said no. With my second diagnosis and treatment it’s something I gave up my choice. Just didn’t taste that great. I still miss it but I have to say I feel better to have eliminated coffee and foods with high sugar and salt content. I miss them all but it’s a balance.
I commend you for giving up coffee. If I had to do that, I think my husband would go running and screaming from the room. I go to bed at night thinking about my morning swim at Barton‘s and my 1st cup of coffee. He actually brings me coffee sometimes to the side of the bed before I even get out. I think it’s out of self-preservation. How is it that Bun doesn’t have colitis after eating that box? Finally, your writing is so good. You’re just whip smart my dear.