Discussed angiogram results with Dr. Weiss:
-No arterial blockage.
-No serious risk of a cardiac event.
-No bar to transplant.
-Possible cardiomyopathy.
He was inclined to wait to start treatment until the radiation sessions were over, but when I said my exercise tolerance was now significantly impaired he agreed that I should start on something now. Identified something he was sure I could take; wanted tocheck with Dr. Bomback about possible kidney risk from ACE inhibitors. Said he’d phone in a prescription, but it didn’t show up at CVS; I left a message at his office.
Wednesday’s lab work came back; creatinine is 5.0, down from 5.9.Apparently creatinine testing is like political polling: enough test-to-test variability to not get excited about a single set of results. Per Dr. Bomback, this doesn’t change his conclusion that I will need a transplant within a year, but it improves the odds that I won’t have to go on dialysis first. Next test scheduled for Tuesday.
Had two very bad nights; as with the last time I had radiation, I have the feeling of something in my throat, and swallowing is slightly uncomfortable. That’s complicated by a persistent stuffed-up nose that’s been with me for a while.
None of this is much of an issue during the day, but it’s enough to keep me from going to sleep. I feel something in the throat, know that I shouldn’t swallow, do swallow, it hurts a little bit, then I’m just worrying and blaming myself for swallowing and worrying without any chance of going to sleep. Worse, I get to sleep, and either the throat discomfort or the stuffed nose is enough to wake me up after an hour or so. Then I feel seriously rotten, with very little chance of getting back to sleep regardless of how tired I feel.
Went to bed about 8pm Tuesday, woke up about 11, never really got back to sleep, and felt miserable. Despite that,I functioned reasonably normally Wednesday. Called Dr. Weiss’s office and left a message, but didn’t hear back.
Wednesday night (last night) I took 1000 mg. of Tylenol just before bed, sprayed the throat with an over-the-counter phenol solution, went to bed, got to sleep, woke up after an hour. I had decided in advance that I couldn’t handle another night like Tuesday, so I took 50 mg. of Tramadol (from an old prescription when I hurt my shoulder).
Tramadol is a weird molecule, with a mix of mu-opioid and serotonin effects, so it functions as a pain-reliever and a mood-brightener. It doesn’t really fit the normal table of milligrams-of-morphine equivalents, but in terms of dosage recommendation 50 mg. replaces about 5 mg. of oxycodone.
It wasn’t so much that I expected it to make the throat hurt less; I hoped it would make me notworry about how the throat felt and get me to sleep. (Truth be told, that’s also true of the pure mu agonists for me; they don’t reduce pain perception so much as they reduce caring about the pain.) So it happenedin this case; it took about 90 minutes for the effects to kick in –a fairly unpleasant 90 minutes –but then I went to bed, dozed right off, woke briefly a couple of times and went right back to sleep, slept through to 11am, got up feeling reasonably normal: still a little bit high from the Tramadol, but fully functional.
So that experiment counted as a (very) partial success. Starting on narcotics in the middle of Week 2 of six weeks of treatment is a clearly losing proposition; with Tramadol in particular, continued administration can have some very nasty side-effects, up to and including seizures. I’ve been on fairly hefty doses of oxycodone (10 mg. every six hours) for weeks at a time, and that’s not the end of the world, but at least at that dosage tolerance builds fairly quickly; within a few days it no longer helps my mood much, and makes me so stupid I can barely read, as a result of which I’m bored out of my skull. I doubt 5 mg. a night for a month would have those effects, but I also doubt it would remain effective, given that the side-effects of radiation are cumulative and I’m still in what was supposed to be the honeymoon period.
So this morning I left an urgent message for Dr. Weiss, and this time he called back fairly promptly. I explained the situation, and we discussed Ambien and the benzos as alternatives. I’d never had Ambien; I’ve had some of the benzos (back then it was mostly Valium) and don’t like them much. They help with sleep, but either it’s not good-quality sleep or they have bad after-effects; I tend to feel groggy the next day. And a month on benzos, given their tolerance/dependence risks, is really pushing your luck. So I was inclined toward the Ambien, which reportedly doesn’t have the grogginess problem and has much less of the tolerance/dependence problem. In particular, there’s an extended-release version that seems ideal for the waking-up-in-the-middle-of-the-night issue.
I hadn’t known about the downside; apparently there’s a significant incidence of sleepwalking and other unconscious behavior (the patient package insert listed “driving” and “having sex” as things I might do without being aware of doing them; I can only hope that no many patients do both at once) or just plain weirdness. Still, given the alternatives, it seemed worth a shot; I’ll take my first dose once I’ve finished writing this. (I went on line and found some patient discussions; apparently the rule is to take the drug in bed and turn off the light, to avoid both unconscious behaviors and the risk of over-shooting the sleep window.)
One option that just occurs to me now is to do Tramadol or another narcotic, Ambien, and one of the benzos in rotation. I’ll ask about that. I bet Ambien and the benzos, both GABA agonists, are cross-tolerant, but as far as I know neither one is cross-tolerant with the mu agonists. Someone should have done that study, but whether it’s actually been done or not I don’t know.Went in for radiation treatment and my weekly meeting with Dr. Sanfilippo. Went 0-for-2: about twenty minutes before I got to the hospital, the power went out and they were on backup emergency generators, and Dr. Sanfilippo wasn’t there so I talked to one of his colleagues. He suggested that I try a lidocaine spray for the throat, but didn’t seem very hopeful that it would work; apparently the pain relief only lasts about 90 minutes, and its primary use is to allow patients to eat and drink. Nonetheless, he phoned in a prescription, but when I got to the pharmacy I was told that my insurance didn’t cover it. I decided to pass for the moment on that option; if the Ambien bombs out I’ll reconsider, and in the meantime I’m going to yell at United Health Group.
Wish me luck on the getting-to-sleep front. I’ll report back tomorrow
