Go to FIRST post –> Diary of My Death, Post #1
Treatment Days 155-168,
Chemo infusion #13 (two weeks later)
This cycle was a little bit different. The treatment was the same, but the experience wasn’t. The sequence was the same – Monday through Wednesday / Thursday feeling like crap (actually, more like a bucket of thin diarrhea left in the hot sunshine on a windless day: no significant substance but unpleasant nevertheless), Friday through Sunday catching up on sleep – but there were a few new . . . uh, features. My guess is that it has to do with the cumulative effect of months of chemo.
On Monday my nurse informed me that the anti-nausea meds (steroids, I think) are what cause the sleep disturbance and suggested that I take the second daily dose just 5 hours after the morning pill. It helped. (With Monday infusions I come home with a portable pump attached to the port in my chest. It’s about the size of a tennis ball and continues to load me with chemicals for 48 hours, so for 2 days I take additional anti-nausea meds.) Still, the second half of the week I was again overpowered with the need for sleep.
Now, understand that I am an avid napper. After all, I am, in fact, The Dalai Napa. But I’ve not been recreationally napping or even restorative napping; I’ve been sleeping. I’d wake up, snack on something, and go back down for another 2, 3, or 4 hours. Repeatedly. I didn’t keep track, but I wouldn’t be surprised if I was sleeping 16 hours a day. The rest of the time I was usually horizontal, doing nothing.
The first few days of the cycle my body is dealing with the chemo, so I’m amped up, fatigued but restless. I’m able to watch DVD movies, if the plot is simple. I don’t want to do a damn thing, but I can do small household tasks such as cooking a simple meal. The second part of the week I am near useless. I stand up to do the dishes, look at the mess in the sink, and then go horizontal again.
When awake, I don’t want to do a damn thing. I don’t want to watch movies; I don’t want to listen to music; I don’t want to read. I do NOT want to do, CANNOT do anything requiring very much effort at all, so anything productive or consequential is simply out of the realm of possibility. I want NOT to think. Let me say that again so maybe its importance and flavor sink in: I want NOT to think. Beside a few random and brief spurts of engagement, I’m alert enough to at most play endless games of Spider Solitaire on my tablet.
All I want is to lie on my bed, stare at the ceiling, and let my brain idle in neutral. I daydream about whatever comes in to my head from I don’t care where: stranded space aliens who look very much like us secretly insinuating themselves into our politics and industry to save us from ourselves; multi-operator pedal-powered tricycles as 3rd world light-work vehicles; rifle-to-crossbow conversion / attachment kits; and the legal requirements of starting a new religion. I don’t want to put any effort whatsoever into guiding the thoughts into anything remotely useful. I let the daydreams gently wash over my mind and carry me away. It’s more than enough. I am grateful that I am able to do this because I have a warm bed in a quiet home. I am like a drowsy dog lying on the front porch, moving only its eyes to watch the squirrels in the yard. Beyond being physically comfortable, I don’t care about anything. I. Don’t. Care.
A sidebar here. If or when chemo weeks become every week and the remainder of my life will be only what I’ve described above, frankly I’d rather go ahead and get it over with and be dead. It’s not that chemo weeks are agonizing torture: it’s that they simply are not life. The chemo weeks are self-aware existence and nothing more. Without the reasonable expectation of the better weeks in between, they are worthless. Just because modern medicine can keep a person breathing does not mean that it is a kindness to do so.
I’ve visited relatives in nursing homes, and what I’ve seen through open doorways and even in the hallways is appalling. One image that won’t stop resurfacing is that of an elderly woman clutching a baby doll as she lay there most probably drugged to sleep. The expression on her face was not one of rest and repose. It was of agitation and fear and childish helplessness and baffling puzzlement. Yes, maybe I was imagining it, projecting my own biased interpretation. Even granting that, no one, though, will ever convince me that she was the least bit happy or even minimally grateful to be there. Just because modern medicine can keep a person breathing does not mean that it is a kindness to do so.
What I guess is the side-effect neuropathy helps with this. When I lie down, nearly immediately I lose the feeling in my feet and legs, hands and arms, and sometimes my whole body. Without looking or moving them, I can’t tell if my ankles are crossed or not. In this relaxed state, I hover on the edge of sleep and lucid dreaming. Actually, it’s kind of wonderful.
Also, I do not want to be disturbed. I do not want the least bit to be social. I don’t want to have a conversation, with anyone, really. That being said, there is a huge benefit to having someone in the next room, maybe quietly talking on the phone or puttering in the kitchen. It’s one of those things in life that are so much more valuable than they seem to be on the surface. I have always enjoyed more solitude than the average bear, but people are not meant to live alone. I’m okay – it is not the mere presence of others but the degree of emotional intimacy with the people in our lives that keeps us from being lonely. Flipping back again, though, there is something to be said for basic company. Sometimes quality arises from quantity.
Oh, I almost forgot to mention the new developments.
The first is the increased neuropathy. It’s been a gradual, subtle advance, but now I have nearly constant tingling in my toes, even indoors where it is a steady 70 degrees or so. Maybe it’s exacerbated by the blood thinners? My fingers tingle, too, and they feel strange. It’s hard to describe the sensation. The closest I can come to it is a combination of tingling, numbness, and weakness. I don’t like it, especially when I’m here at the keyboard. It’s a little scary to think of it going from a strange sensation to worse and then eventually bad, especially when I remember how my mother, near the end of her cancer, had a hard time getting her fingers to hold on to anything. Brrrrr!
The second new thing is a mouth ulcer. Every time I get chemo, mouth ulcers are on the checklist of status questions the nurses ask me, so I have no doubt that chemo (or its side effects) can cause them directly. I may have a different or additional reason.
About two months ago I had a tooth pulled, a back molar on the bottom. Once my jaw was numb, the dentist was able to extract it surprisingly easily and quickly. I asked him if that was it, did it break apart, did he have to dig out any roots or fragments, and he said no, all done. Well, he said no but he must have been confused because he should have said yes, and no, he wasn’t done. It was an easy oversight: I suppose the blood and mess obscured a fragment. After the minor trauma to my gum and jaw healed, it was still a bit more tender than it should have been. In about ten days I could see a tiny white dot surfacing through the pink gum: a tooth fragment working its way out.
Normally I would have gone back to the dentist for a zip-zap-zowee fix, but remember that I’ve been spending a lot of time in the funky state of mind described above. So, I waited, and over weeks the fragment slowly emerged (or grew!) With the side of my tongue I could feel it, especially it’s one sharp edge (the tooth fragment’s, not my tongue’s), and I figured it was that irritation that was causing the increasing tenderness in that area. Once a day or so I would shine a flashlight into my mouth and look in the mirror to inspect the tooth fragment, but I didn’t notice any sores or infection.
However, that area of my mouth had become quite bothersome. The pain of eating was enough to pull my attention from the TV, the video game, or the open book on the table. Something was up. Somehow, I got the idea to stick my finger in there to push my tongue to the side, and there it was, hiding under my tongue, just below the tooth fragment: a white ulcer no bigger than a ladybug. Ah-ha! I cotton-swabbed it dry while I decided it was time for the tooth fragment to go. I sterilized the prongs of a needle-nosed pliers (a Leatherman multi-tool, actually, which can be used, according to my Texan friend, to fix anything except a broken heart) and plucked out the offending tooth fragment. I rinsed with salted water and went to bed. In the morning, the ulcer was noticeably better. I suspect they may have been related, perhaps by the tooth fragment expulsion oozing tiny amounts of goopygunk (yes, that’s a medical term.)
Here’s the thing about the tooth fragment and mouth ulcer, and why I wrote all about it. Each were such small things, both very, very low on the scale of problems in life. However, after six months of chemo, minor irritants like these (the kind that don’t disappear in a few minutes but stay around to pester you for weeks) become more than minor irritants. It’s Dark Magic, for sure. Being chronically ill magnifies annoyances: unnoticeably it wears down your energy, stamina, and attitude, the same way constant drops of water wear down granite. So, when your chronically ill loved-one erupts over something minor, or seems not to be mustering reasonable and appropriate good cheer, go easy on him or her.
Speaking of life’s little annoyances, on a tangent, to close I’ll borrow the words of Gilda Radner: “Well, Jane, it just goes to show you, it’s always something — if it ain’t one thing, it’s another.” By the way, the title to her autobiographical book about her lethal cancer is “It’s always something!” She was funny! If you younger folks aren’t familiar with her, go YouTube her SNL character Roseanne Roseannadanna or at least check out the Wikipedia page.
Go to my next post, #19