I was pretty much exhausted yesterday, and had a hard time getting out of bed this morning, which is pretty much the cycle of my weeks. If we say infusion is day 1, on day 2 I'm pretty wired for much of the day. I tend to sleep for a couple hours in the clinic (Benadryl), but by bedtime I'm wide awake (Dexamethazone). I usually go to bed, but I lie there becoming more and more awake, until I give up, and get up, and go do something productive. Occasionally I've watched TV and knitted into the wee smas; this weekend I sewed a birthday gift for Cousin S (only a month late this year, instead of 11 ½ months late like last year). This week I went back to bed a little after 3:00am, and woke again at 6:30. This was actually the second day in a row that I woke at 6:30, which is bad, because then the dogs get up, thinking it's time for breakfast. It's not time for breakfast, of course, but they're so completely starving that you feed them anyway, just to get them out of your hair. And then, because essentially it's the middle of the night still, they both go back to bed for several hours. I don't, because I'm awake, so I get up and make myself caffeinated coffee (which I stopped drinking daily about 18 months ago), because I know otherwise I'd crash at some point midday, and I would rather spend the day awake and be able to sleep a normal night's sleep when bedtime comes around again.
On day 3, then, I'm pretty much useless. I sleep something like 10 or 11 hours, drag myself out of bed in mid-morning, and pretty much lie around all day. Fortunately, two mornings in a row of 6:30 breakfast did not a habit form, and yesterday the dogs slept until Ian got up at 9:30. I did make it down to Renton to have lunch and a game of Scrabble with my grandmother, who's inching toward 94. I was roundly beaten—238-298. After I returned home, I napped for about an hour and a half, then went to bed for real around midnight.
Today, day 4, I had my riding lesson. It's hard to get myself out of bed on day 4 as well—it's so warm and cosy there in the flannel sheets, under the down comforter. I drank caffeinated coffee today as well, to help me hurry my way over to Woodinville, and make it through my lesson. Next month I'm actually changing my lessons to day 6, when I usually feel pretty normal.
Last week on day 5 I walked my three miles—I may try a similar-length walk tomorrow morning.
On day 6 I'm feeling almost like my old fit self, and day 7 even more so. On days 6 and 7, I often find myself thinking about setting a regular waking time, consonant with Ian's, and a regular bed time. I think about when I'm going to get back into rock climbing (holding me back are both the mild neuropathy and the fact that I'm bloated—and my fingers are bloated—for a couple days after the infusion), and maybe playing Dance Dance Revolution a couple times a week to get some aerobic exercise. And then the cycle begins again with the infusion.
Nevertheless, here is what I find surprising—that I feel tired at all. That I am reacting to these drugs at all. That there is a recognizable pattern. I guess I'm partly surprised because it's taken me 8 months to really recognize the pattern, to know more or less how I'm going to feel on a given day. I mean really, 8 months?
I suppose that another part of why I am surprised is that I really seem to be dealing very well with the medications. My neuropathy is hardly noticeable at all. I don't have any nausea. I don't have any bone pain. I am breathing fine. My heart rate is normalizing. My guts are functioning, even though I've been on low-dose antibiotics for six months. And so why, then, do I continue to be wired on day 2 and tired on day 3?
I suppose the logical answer is that I get pumped full of chemicals on day 1, and even after 8 months my body—the healthy part—still objects to that (actually, the cancer part, what's left of it, is probably objecting as well). There are things about the cycle that my mind likes—I do enjoy the drugged Benadryl naps. I do get a kick out of all the work I can do on a wired day 2. But mostly, now, my body and my mind both are looking forward to day 8, and day 9, and day 10, and so on.