Tomorrow chemo starts again. I’ve started the “day before” regime of taking oral steroids. I’ve been off the antibiotic for a week, and my last chemo side effects are long gone. I’m feeling normal, though “normal” is a rapidly moving target.
I had looked forward to being smooth as a baby mouse, but my head feels much more like a cat’s tongue than a cue ball. Straight white hairs are sprouting, giving me a psych-ward sheen, and the few black hairs on my chin have returned. Apparently both are buoyed by poison and mean thoughts. This next chemo infusion will beat them back into submission temporarily, but now I know they will be the first to return. Like cockroaches. Motherfuckers.
I started the steroids this morning; more tonight, then again tomorrow (chemo day) and the following day. Just to get me through the assault of poison. I’m sweaty and jangly, and predict spotty sleep. But hey, otherwise I feel great!
I was talking through my game plan with Bob, who pointed out that I’ll be really good at chemo by the time I’m done. Life skills: chemo. I feel like I’ve learned a few things already, based on the first round. My knowledge is a bit uncertain, because I’m not sure where and when the chemo symptoms and the septicemia symptoms began to overlap.
The chemo side effects are so alien, it’s impossible to know, especially at first, what’s in the bounds of “normal.” Everybody knows about hair loss and nausea. That was actually the sum total of my chemo knowledge until a few months ago. I now know there’s so much more, and there’s a remedy for every chemo malady. But some of them are bullshit.
I will probably feel pretty good (if a bit amped and sleepless) tomorrow (Chemo Wednesday) until Friday night. Last time around, I knew the honeymoon was over when I needed to lie down on the couch during evening TV time on Day 3. The following day, I could barely walk up the stairs.
Saturday will be suck day. Sunday, slightly better but also bad. Last time I called the oncology nurse triage line often, just to check: “I’m having extremely painful body jolts. I think my bone marrow is cramping. Or my joints. Maybe my muscles, all of it. Do others mention this?” Yes! Yes, they do. Many get relief from Claritin.
Claritin, the allergy medication? Yes! Okay. A friend going through chemo confirmed, but said it took time to kick in. I started right away. It did nothing. I toughed it out, assuming relief was imminent. Mistake. On another nurse line call later in the week, it was suggested that I try Cetirizine (Zyrtec) instead of the Claritin for some wizardly reason, and I pointed out that I’d been taking Cetirizine for my allergies every goddamned day for years – up until days earlier when I switched to Claritin. Conclusion: Total bullshit. New this round: Pain is pain, and pain requires narcotics. Body jolts get Norco/Vicodin.
On the nights I couldn’t sleep, I dabbled in Melatonin and medical marijuana capsules. The pot makes my heart pound and isn’t quite strong enough to knock me out, so I was mostly awake stressing about my banging heart. Conclusion: Bullshit. Stop fucking around. During steroid time, Ambien. If trouble sleeping the rest of the time, start with Ativan.
Ambien doesn’t even knock me out – anyone have some Ketamine? Enough to get me through May? In addition to tranquilizing horses and assisting with date rape, it apparently helps human depression. Like if you’re bummed about cancer, and terrified that even if you live through chemo it will come back. Sounds perfect. Not the date rape. I could be a focus group of one. N = 1. The results wouldn’t be statistically significant, but they could be wildly informative.
Last time I developed oral thrush very quickly, which is extremely uncomfortable: a swollen, sensitive tongue and absolutely raw throat. Conclusion: I know the signs now, and there is real, not voodoo bullshit, medication that stops it almost immediately. Yay.
I had such a magical plan imagined for chemo survival last time: lengthy walks, leisurely naps, full seasons of The British Baking Show. Therapeutic detox saunas, dry brushing, yoga, meditation. Green tea, CBD-infused tea, chaga mushroom tea. An exclusive diet of healthy nuts, fruits and vegetables, with some organic meat. Conclusion: Bullshit. I’m narrowing my focus, simplifying: Anti-nausea meds. Microwave popcorn. Narcotics. Miralax or Imodium, depending.
Still dialing in the pot usage. Will be skipping pot at night. I will be more diligent about vaping pot before meals, to help prevent gastric distress once the food hits my gut.
And I now understand how the oncology nurse triage line works. I will continue to call with any and every question. However, there’s one guy (like only one, the rest are women) who works as an oncology triage nurse, and I don’t like him. I’m extremely lucky that I feel heard and believed in pretty much all aspects of my life, and for whatever reason I’m able to demand it if it’s not happening (whatever reason = white, entitled, insured, have money). Except when I’m feeble, poisoned and unsure of whether I’m dying. Given the opportunities, John didn’t help. So he’s out. I’ve been tipped off that if he answers, I can request the other triage nurse (there’s always another one). I’m from MN, so pretty much 98% chance I just hang up if John answers. Everyone else is a supportive, sympathetic angel, even if they do try to hoodwink me with some bullshit hippie allergy medication remedy.
Earlier today I told Bob that I’d started the steroids in prep for chemo, and apparently I was being a little snappy or something, because he said, “I can tell.”
Bob is now dead, unfortunately. I’m trying to teach the dog to administer Zofran and Ativan. Stay tuned.