Medical Journal: 10/20/18

Nothing really new to report. If any of the symptoms are improving, it’s not noticeable to me. I would have expected to be in better shape two weeks-plus after the last treatment I’m coughing up occasional tiny bits of what appear to be tissue from the throat. Climbing three steps up to a train with my luggage, then hoisting my suitcase to the rack above the seats, left me seriously panting.

As of Thursday morning, my voice had progressed from a whisper to a croak, which seemed like important progress. But two days of talking too much at a meeting set me back again. This weekend I’m planning to be silent except for a few short phone calls; I’ll see if that helps.

Off to Prague and Amsterdam Tuesday night. That’s not seeming nearly as good an idea now as it did when I planned it, but I still expect to have a good time.

Medical Journal: 10/13/18

Sorry for the long silence. I thought I’d posted something Wednesday, but apparently it didn’t take.”Getting up slowly,” as the football announcers say when someone’s had his chimes rung. But I should have the worst of it behind me now.

Those two nights of sleep without chemical assistance were the exception, and tolerance is starting to build; last night, even with 50 mg. of Tramadol, I didn’t sleep at all, though I got up at 4am Pacific time (7am Eastern) and didn’t get to bed until 11pm. I think my energy is a little bit better, but the sore throat is persistent. Whatever I take to deal with it causes me to cough, which tears up the throat again. It’s a losing proposition. The pain is never severe, but it’s enough to interfere with sleep.

Got the latest lab work back; Dr. Bomback reports that the creatinine number (which measures kidney function, with higher numbers reflecting diminished function) is up a little bit, presumably as a side-effect of the Entresto. He thinks it’s ok to stay on my current dose, but doesn’t want to boost it any. That leaves me with some cardiac insufficiency, enough to make a one-mile walk a significant problem. I’m going to ask Dr. Weiss if adding one or the other of the previous heard meds to the current dose of Entresto is an option; the one time I took all three on the same day (not knowing that the Entresto was supposed to replace the others) was the one day I could walk some distance at a normal pace.

Waiting to get my voice back; Dr. Sanfilippo thought three weeks or a month from a week ago. I hope that’s right, but so far there’s no progress

Medical Journal: 10/6/18

Last treatment Thursday. Dr. Sanfilippo says the coming week may be the worst; then expects me to feel better “from week to week, not from day to day.” Likely to have a voice about three weeks from now. He suggests having Dr. Sulica scope me about a month from now, when the inflammation has died down. Predicts that the tumor mass will have disappeared entirely, leaving nothing to biopsy.

Indeed, I’ve felt fairly rotten the last couple of days. I seem to be feverish, and yesterday when I took too many pills too quickly they came back up. On the other hand, I’ve now had two nights of undrugged sleep, the first time I haven’t needed sedatives in nearly a month. Got a good night’s sleep last night, woke up, had breakfast, checked my email and Twitter … and went right back to bed for another few hours of sleep. The deficit must have been profound, but right now I’m fully alert and comfortable. Tomorrow may be the time I try some exercise.

Still no results reported from my blood and urine test. Definitely crossing LabCorp off my list. I’m told they specialize in workplace drug testing.

As promised, the radiation oncology team let me keep the custom-made mask that was used to keep my head from moving during the treatments. Having a genuine North American piece on my wall will diversify my collection, which otherwise is entirely West and Central African. For a people with a relatively limited tradition of ritual mask-making,the North Americans show a great deal of promise. I greatly admire the combination of portraiture with high abstraction, reminiscent of the best Lobi work,or the early Cycladic figurines.

Ritual Healing MaskN. American, early c. XXI.

Medical Journal: 10/3/18

Next-to-last treatment today. See Dr. Sanfilippo for my last status check after the final treatment tomorrow. Not feeling horrible, but the sedatives I’m taking every night to sleep –or just to rest comfortably –leave me draggy during the day. And yes, rotating chemicals seems to work –at least, Ambien worked again after three days off. Sore throat has been annoying but not unbearable. Loss of voice very inconvenient. Exercise tolerance quite low.

On the other hand, on Sunday I graduated from “Obese” to “Overweight” on the standard BMI chart, and the one 46L suit I kept around now fits perfectly.

Went to a for-profit stand-alone lab (Labcorp) today for routine blood and urine tests. Pretty grimy. I think I’ll go back to Columbia, though it’s more of a schlep. If the results look good in terms of kidney function, I’ll be able to raise the dose of Entresto and –with luck –feel reasonably normal again.

Today’s treatment involved an unnecessary scare. The technicians said that today was my weekly X-ray. (I’m not sure what it’s supposed to show; surely a 1cm soft-tissue tumor can’t be visible?) After they put the mask on and clamped me in –which means I can’t see anything –I heard the sound of what I guess was he X-ray machine and then the brilliant flash. Then I waited. And waited. And waited. Usual treatment takes about 2 min. from being clamped in to being released; this must have been close to 15 minutes, and the treatment still hadn’t happened. I started imagining all sorts of things that could have gone wrong, but no one was saying anything.

Finally I heard the sound of the treatment and was unclamped. As I got up, I said to one of the technicians, “What the hell just happened.” Answer? Nothing. The M.D. had to look at the X-ray before the treatment went ahead, and he was busy.

Since I don’t have any clear idea which of my symptoms relate to the cancer, which to the radiation (except the sore throat, the sleep problem that comes from the sore throat, and the sunburned neck), which to the cardiomyopathy, and which to the renal insufficiency, I’m not sure how much better I’ll feel a month from now. Fingers crossed.

Medical Journal: 9/29/18

Four more radiation treatments left. (I should have been down to three, but a power outage shut down the treatment facility Wednesday morning and I had to catch a train at 1pm. Second time that has happened. The facility blames Con Ed; this time it was apparently a manhole explosion.)

Met with Dr. Sanfilippo Tuesday. Seems to me his predictions about the time-course of side-effects is noticeably less sanguine now than it was before treatment started. He predicts that next week will be 15% worse than this week, and that from there on progress will be noticeable at the scale of weeks rather than days. So I’m unlikely to have a speaking voice until mid-to-late October.

The soreness in the throat isn’t noticeable when I’m just sitting down, but swallowing (liquids or solids) is consistently uncomfortable, and if I get horizontal it’s bad enough to keep me awake. I had been worried about building up a tolerance to Ambien; in fact, it failed decisively the fourth time I used it. So I’m ow using oxycodone and Ativan every night, which again probably isn’t sustainable for three weeks. (And yes, I know benzos and narcotics are a bad combination, but at 5mg. of oxycodone and 0.5mg of Ativan I’m not too worried.) I started at what turns out to be the maximum recommended dose of Ambien (12.5 mg., above that the frequency of weird sleepwalking behaviors gets unacceptably high; at the current dose I haven’t experienced any such impulses.

Hoping Tramadol isn’t completely cross-tolerant with the oxycodone; I think tonight I’ll try one of the 200mg. extended-release Tramadol, which is supposed to be good for a day but generally lasts me about 72 hours. Last night even oxy-and-Ativan didn’t actually put me to sleep right away, but it allowed me to drowse comfortably and without worrying or swallowing excessively. Seems as likely as not that I’m going to have topush up the oxycodone dosage to 10mg. before this is over. (Again, raising the dose of Tramadol is definitely not recommended, nor is any sort of extended use.) That wouldn’t be the end of the world; when my back was at its worst I was on 10mg. of oxycodone every six hours, so 10mg. daily is certainly tolerable. Still, as someone who can’t use NSAIDS because of their kidney risk, I’m really worried about running up my opioid tolerance. Mornings are difficult, but I seem to be reasonably clear-headed during the day.

I’m also using a Maalox-lidocaine-benzadryl combination to treat the soreness directly. It works moderately well, but tastes utterly vile (the only liquid benzadryl I could find was –yech –“cherry-flavored”). The other problem is that it leaves a coating on the already-swollen tissues of the throat, which after half an hour or so induces a horrible sort of barking cough that leaves the throat more irritated than before, despite my 3-a-day benzonatate cough medicine. Constantly using cough drops to keep my throat and mouth moist, but the result is continually irritating the throat by swallowing.

It seems to me that I’m getting (even) more forgetful, which is seriously annoying. I carefully packed everything I needed for a four-day trip to Boston for a conference, and just as carefully left behind the pill bottle where I’d put a four-day supply of the heart meds, the stool softener, and the benzonatate.(My crew in New York managed both to FexEx me some pills overnight and to persuade my internist to call in a four-day prescription to a pharmacy in Cambridge.) The only good news coming out of this is that I was deprived of any heart medication for thirty-six hours, with no noticeable symptoms, and in particular no shortness of breath, even lying down.

The other good news is that professional life continues to be going well, and I appear to be cranking out off-the-wall ideas at something like my usual rate.

Medical Journal: 9/24/18

Turns out that Dr. Weiss had left me detailed instructions, but on a voicemail I didn’t see. As a result, I failed to discontinue the Bidil combination before starting the Entresto. That may explain how terrific I felt just after taking it. Now that I’m on the Entresto alone, my breathing is fine but my exercise tolerance is back down. I can walk a few blocks, but not at full pace.

Dr. Weiss says that the Entresto dose is the minimum, to test whether it’s hurting the kidneys. Will do a creatinine test 10 days from now; if there’s no sign of damage, he will boost the dose and expects to have me back to baseline in terms of functioning. (The Entresto treats the symptom of cardiomyopathy –which turns out to be my diagnosis –without treating the underlying disease; I’ll be on it for the rest of my life.)

The swelling in my feet and lower legs has subsided, though not yet back to normal. I’ve also dropped considerable weight, down from 250back to 237, which was about my trough. I was wondering why I was gaining weight back; hadn’t thought about fluid retention.

My current problem is that the radiation side-effects are indeed building up. It now feels as if I’d half-swallowed something. I don’t feel it ordinarily, but it’s uncomfortable to swallow food or water,and it’s noticeable enough lying down so I can’t get to sleep without chemical assistance. I’m now getting a full night’s sleep, but whatever I took the night before leaves me draggy during the day. Whispering works ok over the phone if I have a headset, and for one-to-one conversation, but it’s a problem when, e.g., I need to use my cellphone to tell a Lyft driver where I am.

Five radiation sessions to go, and some additional time to recover.Looking forward to it.

Medical Journal: 9/20/18

Dr. Weiss prescribed Entresto, a combination of two drugs neither of which I understand, to try to get my heart back in action. The first I knew of that was when I showed up at CVS to pick up another prescription. So I had no briefing about how to take it, what side effects to expect, etc. I talked with the pharmacist, who told me to go off Losartan, since one of the drugs in Ernesto works through the same mechanism. Indeed, he recommended that I take a three-day break from Losartan before starting Entresto; apparently the interaction risk is hypotension. Read the PPI, which told me Entresto tends to raise potassium levels, and my potassium was already at the top of the normal-limit range. Delighted not to eat avocados, but I’ll miss spinach, bananas, potatoes, and sweet potatoes. This is not the first time Dr. Weiss has prescribed something without telling me about it: not a good practice.

Went home and took my first dose. Within 90 minutes I felt much better. Can take a full slow inhale-exhale. Walked about 1/10th of a mile at full pace; at the end, I was breathing fast, but felt fine. Slept almost 12 hours without any breathing problem.

Weighed myself and I’m five pounds down from yesterday; the radiation oncology team pointed out to me that the swelling in my feet and legs probably meant that I was retaining water throughout the body, and asked me whether I had gained weight. I had: I was up to 250 from a trough of 235. However, the foot and leg swelling is still very marked (to the point where it keeps me from fully rotating the right foot up and down) not obviously improved from yesterday.

Got up this morning and took Entresto (Rx is for twice a day) and isosorbide; didn’t take the hydralazine because it has to be taken with food and I felt slightly queasy. It’s now 2pm and I still haven’t taken it, and my breathing is still fine. On the other hand, I’m feeling a little bit dazy –not too much to work, but clearly not 100% mentally –and there’s a fairly loud ringing in my ears. Hoping these are transitional effects and will subside. Called Dr. Weiss’s office to make an appointment and was offered next Thursday; asked to have him call me.

Despite the daziness, it’s hard to express how much better I feel.

Medical Journal: 9/17/18

Some progress. I boosted both heart meds to 4 times a day (with an OK from Dr. Weiss), and that seems to be close to adequate to prevent the problem of waking up air-hungry. I actually got something like six hours’ continuous sleep last night, if you’re willing to count 7am-1pm as “last night.” I’d been taking the heart meds by the clock, and if anything pushing the timing a little when I started to feel my breath shortening. But it’s now 6 hours since my last dose, and I’m feeling fine. I can do a 15-second inhale followed by a 15-second exhale, though I can’t keep it up for long; at my worst, I was at about a second each way and my chest muscles were aching.

Voice is still pretty much a whisper; I’ve now got a headset rig at home that makes me reasonably audible on the phone.

Still trying to connect him and Dr. Bomback to negotiate the use of other drugs to improve heart function that might pose a kidney risk, but the combination of swollen feet and calves and very low exercise tolerance convinced him that I should go back on half my previous dose of Losartan. That does seem to have brought the blood pressure down a bit; last reading is 121/70. I wonder whether the sudden onset of heart symptoms had to do with my going off the Losartan and the hydrochlorothiazide to protect what’s left of the kidneys.

So I’m feeling all right,but the swelling is still there, and exercise tolerance is if anything lower than it was a few days ago. Even at a reduced pace, a walk of as little as a quarter-mile is problematic.

The optimistic viewpoint is that I’m feeling the side-effects of radiation (today was session 19 out of 28) and will bounce back when that ends two weeks from now. I don’t really want to think about the pessimistic viewpoint.

The good news is that I’m now up to four volunteers to give me a kidney, which is heart-warming as well as life-extending.

Medical Journal: 9/10/18

There’s no doubt the heart medications are helping, but I suspect the dosage (37.5 mg. hydralazine and 20 mg. isosorbide dinitrate three times a day) may be a bit too low; I’m good all day, but by the time I wake up I’m breathing hard. Will ask Dr. Weiss about that.

Also noticing some swelling in the feet and calves, most markedly in the right foot. That can’t be a good sign.

The hydralazine is marked “take with food,” and I discovered why when I took it along with just a little bit of food and failed to keep it down. It turns out to be fortunate that the pharmacy didn’t have Bidil, the combination drug. The levothyroxone I take has to be taken in the morning, at least 30 minutes before eating anything. That means that I can’t take the hydralazine first thing in the morning; fortunately, I can take the isosorbide, which seems to give fairly rapid relief from shortness of breath.

I’m also running into some fairly severe leg cramps at night, despite taking both zinc and magnesium drinking plenty of water. The episodes don’t last more than a couple of minutes, but while they last they have my undivided attention. They may be related to the spinal stenosis which I had fixed surgically thirty years ago but which I know is coming back.

On the other hand, the throatis much less bothersome than it was; what soreness remains is mostly well-controlled by cough drops and a phenol spray, without resorting to the lidocaine-Maalox-benadrylcombination. It was never much of an issue during the day, but now it isn’t a problem at bedtime either. I haven’t needed a sedative to sleep for the past three nights, which means I’m functioning better mentally. I’m now mildly optimistic that the radiation side-effects will be reasonably tolerable, which is considerably more optimistic than I was at the end of last week.

The voice has improved a little bit, from just a whisper to a fairly audible croak that sounds like a bad imitation of Brando playing Don Corleone; that may be just because I’ve done very little talking since Friday.

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APPENDIX FOR EXPERTS

As part of the evaluation process for a kidney transplant, NYU Langone drew a dozen vials of blood and took a urine specimen. (The vampire must have been thirsty.) The list is below. The highlighted items were either negative or within normal limits. Results for the rest below.