“Hot water, soak feet?” My Chinese medicine doctor asks me this every time I see him. As in, have I done it, every evening before bed as prescribed. I admit I haven’t, and he looks a bit disgusted that I’m not able to follow through on basic instructions. “Very important!” he says.
It’s all important. The daily regime of life becomes a bit more complicated with cancer. I’m supposed to take my targeted therapy capsules at exactly the same time every night; I’ll take the win if it’s within an hour. I’m supposed to take my blood pressure a couple times a day, at the same times as the previous day. That has never actually happened; I take it whenever I think to do it, and it’s entirely randomized day by day. I diligently record results in a handy iPhone app – I’m good at that part. Friday marked 22 years since my brain aneurysm hemorrhage; managing blood pressure is particularly relevant for me. As I continued to take the new cancer drug, I spent time panicking that I would 1. stroke out and 2. be expelled from the study for uncontrolled blood pressure, which must stay less than 150/100, and even with increased blood pressure medication, I was not reaching that goal.
My Mayo oncologist ultimately reduced the dose of my Lenvima oral cancer medication. I worried that the cancer treatment would be less effective on a lower dose – no; turns out no one can manage on the high dose, but they start everyone there “because that’s the way the study is written.” [Edited when I noticed I hadn't dropped any f-bombs in this post, and this seems like a good place for one. What the fuck??]
My team was vaguely sympathetic about my side effects: body aches, sore mouth and throat (pretty much all mucus membranes: “tampon made of twigs” didn’t get the reaction it should have, and in fact resulted in my oncologist deducting that all of my side effects are hormonal, and not related to the Lenvima -- which I don’t believe). They tried to make me feel better by telling me most people have screaming diarrhea, too. Dodged that bullet (so far). I tried to confirm with my Dr. Lionel that it was okay for me to have low-dose THC seltzers. He asked why I drink them; I said to relax, as I don’t drink alcohol*. [*Edited to add "any more," though I was never a big drinker.] He asked what else I take to relax and I said Vicodin, to which he threw up his hands and said “What is this world coming to that people take Vicodin to RELAX,” which made me sad because it’s obvious that Dr. Lionel has never experienced Vicodin.
I still am not feeling any effects of the cancer – just the side effects from the drugs. The biggest issue right now is eating. My mouth and throat are sore to the point that I avoid eating, because it hurts. It’s no surprise when I totally and completely hit a wall, energy entirely depleted. That’s what we’re working on this week. We’re at the cabin, so on our own for food production. I have frozen smoothies I doctor up with protein powder. I like cereals like Malt-o-Meal, oatmeal and muesli. I’m happy to eat chia pudding. I need to focus on getting in more protein and vegetable matter. I have some mouth sprays that help the discomfort a little; the most effective is something chefs visiting the Indigenous Food Lab brought. It’s chilcuague root extract that they made. I showed it to Dr. Lionel, who was incredulous about the home-printed label stating “'Antifungal, antibacterial, antiviral, digestion, toothaches, and more.' And more?? And more?? What else could there be??” Apparently he thinks it’s functionally impossible for one essence to have all of these properties – and more! It tastes awful when you spray it into your mouth, and there are moments where it feels like something really bad is happening and it might be time to go to the hospital. But then the drooling stops and the numbness takes over and it’s really quite pleasant. How bad can it be. It’s not like I’m drinking gallons of the stuff.
Dr. Lionel is not a fan of me ingesting potions someone made in their basement out of plants. Whatever. It’s one of the risks I’m willing to take. Along with hot water, soak feet (I’m on a 3-day-in-a-row streak!). All of my health advisors have told me to not be stressed out, not think about the cancer, and since I feel fine now – I should just keep feeling fine and carry on. Weirdly, this is starting to sink in. Hot water soak feet isn’t going to cure my cancer, but it might improve my relaxation and my mood (it’s supposed to reduce anxiety). It’s clear that Dr. Lionel’s (extensive) studies haven’t taught him EVERYTHING. Like the wonders of Vicodin, or basic principles of Chinese medicine, chakras, energy healing, or the efficacy of potions made in basements.
I admit it sounds farfetched to say I’m getting beneficial results when a Chinese guy decides where to poke me with needles based on two numbers I give him at the beginning of the session, or I talk to a man in the Bay Area once a week, and he’s curing my cancer over the phone. The element of hocus pocus voodoo magic is weirdly comforting. It keeps me from sinking into despair. The news is two steps forward, one step back. After the first three weeks of this new treatment, my cancer tumor marker blood test dropped significantly. Three weeks later, that test showed higher than ever. My doctor celebrated the drop, and downplayed the increase. Which is it? Can’t say. No one has this shit dialed in. So I continue to genuflect to my new rituals while also trying not to dwell on the fact any of it is happening. Today? Today I feel basically great. The birds at the cabin are amazing; Baltimore orioles, rose-breasted grosbeaks, rafts of white pelicans and cormorants on the lake (undoubtedly scooping up all of the stocked baby walleyes), wood ducks in the wood duck houses, tree swallows in the blue bird houses. Osprey on the nest platform, but maybe not in the nest. Sandhill cranes in the field stubble – haven’t seen the colts yet. I’m actually pretty great.