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: 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: 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: 10/13/18

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: 10/20/18

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: 11/4/18

Progress. I have a voice. Not my normal voice, but workable. Big relief! Overall, I felt much better in Amsterdam (the second half of my trip) than I had in Prague.

Still coughing. Overall, the radiation side-effects were much more severe than had been advertised.

More progress: One of my volunteer kidney donors matched. That substantially improves my odds.

Still very short on energy, and I’m no longer confident that’s the radiation side-effect as opposed to the heart problem. Economizing on walking and carrying is a substantial complication. Hoping the negotiation between the cardiologist and the oncologist will result in a somewhat higher dosage of the heart medication.

Weight seems to have stabilized between 225 and 230. I could stand to lose more, but being down 30 is certainly progress. It’s hard to express what a joy it is to have –for the first time in my life –a normal appetite. I enjoy my food, but in limited quantities. I had attributed the appetite loss to the cancer, but the cancer’s gone (I’m told) and the appetite hasn’t come back, suggesting that the issue is renal insufficiency.

Bunch of medical appointments next week.

Medical Journal: 11/12/18

Progress has slowed. Voice maybe coming back a little, but still husky and variable; it runs out of steam after a while. Energy, as far as I can tell, not improved at all. Cough is still nasty (and productive) though perhaps a bit less frequent. Throat no longer sore, but persistently scratchy, and I’ve been chewing cough drops constantly. Appetite not noticeably changed, but somehow I’ve gained about seven pounds from my low of 225-and-change.

This week and next I’m seeing all my docs other than the transplant surgeon. Today was Dr. Weiss, the internist/cardiologist.

He’s still upbeat about the heart, but stymied for the moment because any increase in the dose of Entresto would be a threat to the kidney. The problem is mostly cardiomyopathy. Ejection fraction is 42%, which is in the mild-to-moderate range. The narrowing of the arteries is non-obstructive. So the disease should respond well to medication, once I can get on a full dose of medication. I asked about the sudden onset of the problem and its apparent triggering by a dose of Ambien which didn’t bother me once I’d started on the cardiac drugs. Answer: It’s anyone’s guess. Some people have severe symptoms of heart failure with ejection fractions higher than mine, others are asymptomatic at lower fractions.

In the meantime, Dr. Weiss suggested going back on 12.5mg of hydrochlorothiazide to get rid of some water weight. If in fact the energy level and stamina won’t improve until I’ve had the kidney transplant and been able to go on a full dose of Entresto, I’m inclined to try to speed things up, though I’m definitely not looking forward to the year of immuno-compromise that will follow the surgery.

Dr. Weiss suggested the same thing my friend Lowry Heussler suggested in terms of exercise: a recumbent bike. I was able to do about fourteen minutes of interval training, albeit at the lowest resistance level. At the end I was puffing but not panting, and recovered quickly, so it looks as if that’s an amount of exercise I can tolerate. With any luck, I’ll get back to being able to walk the mile to work, and that will make exercise part of my life rather than something I have to get dressed for.

I had attributed my loss of appetite first to the cancer and then to the radiation, but the cancer is gone and the radiation was over a month ago. Sally Satel, who has the same kidney disease I have (IgA nephropathy) and has had two transplants, reports that she started to lose appetite as her kidney function declined, but that it bounced back after the transplant. Since that’s the one symptom that’s a benefit, I don’t actually welcome the prospect.

I’m quite comfortable and sleeping well, but I’m now getting a bit cranky; I’d expected to be feeling better once I had the radiation well behind me than I felt having an active carcinoma, and I’m not.

Medical Journal: 11/13/18

Saw Dr. Sanfilippo (the radiation oncologist) and his team. They weren’t surprised that the voice was coming back slowly, but they were surprised and worried by the persistent productive cough. Recommended a chest X-ray to rule out an infectious bronchitis or pneumonia. Did that; film came back ambiguous. I’m prepared to wager it’s the same radiation scarring that showed up on the X-ray three months ago, but I’ll ask Dr. Sulica to check when I see him Thursday. Dr. Sanfilippo suggested that the cough might be self-reinforcing through continued irritation of the throat, which certainly seems to be what’s happening. If that’s the case, than an asthma inhaler such as Advair might suppress the irritation long enough to suppress the cough long enough to relieve the irritation. Again, a question for Dr. Sulica.

The voice should continue to improve. In the long run, I now learn, it might be a little bit deeper, which would definitely be an improvement. It also might be a little bit softer, but I’ve always had volume to spare.

Yes, Dr. Sanfilippo will write a letter clearing me for the transplant. It’s close to certain that this tumor is gone, but there is some risk (10%?) of a recurrence over the next couple of years, so I’ll have to see him and Dr. Sulica every few months just to get checked out.

Medical Journal: 11/15/18

Never a dull moment. Saw Dr. Sulica, and learned many things:

-Yes, the dubious region in that X-ray is new. Likely a pneumonia, caused either by a gram-negative bacterium or an anaerobe. Fortunately, zithromycin is broad-spectrum and excreted in bile, so it puts no burden on the kidney. Will start on that tomorrow.

-No, the cough probably wasn’t anything to do with the carcinoma, even though the carcinoma was discovered looking for a cause of the cough. Maybe it’s continued irritation of the throat by the radiation, though that seems to have died down. Maybe it’s the pneumonia, but probably not. Maybe it’s self-reinforcing; no reason not to try dextromethorphan (that was my suggestion) to see if that breaks the cycle. Failing that, yes, we might even try Advair. But it’s quite possible that I’m simply “a guy with a cough,” with nothing to be done about it. (Still doesn’t answer why I’ve gone from a normal-sounding cough to a sick-sounding one.)

-Yes, the voice might continue to recover. Or it might not. As a result of the radiation, there’s now a little bit of webbing between the working vocal fold and the paralyzed one. (The tumor was right in the crotch between them.) That means they can’t close up all the way. Surgery would have had the same side-effect. No, there’s basically nothing to do about it; I’m going to have whatever voice I have. Since Dr. Sulica is famous for fixing voices, I have to regard that as a definitive judgment. (Someone told me she found my current voice sexy; we’ll see how that works out, but my past performance isn’t encouraging.)

-Yes, he’ll write a letter clearing me for a kidney transplant. He wants to see me once a month for six months; he estimates the recurrence risk at well under 10%, but it’s not zero. For now, as predicted, the tumor mass is gone.

Dr. Sulica is fairly convinced that both the carcinoma and the heart disease are delayed-onset side-effects of the radiation treatment I had for Hodgkins Disease eighteen years ago. That treatment was described to me at the time as “a little bit of consolidation radiation treatment” to put the last nail in the coffin of the HD after six rounds of enhanced BEACOPP had killed it. That makes me wonder how much my risk of having the HD come back (estimated at the time at around 10-12%) would have gone up if I’d skipped the radiation. What I’m sure of is that my oncologist at the time –who was very good about consulting me on treatment decisions, including whether to use standard or enhanced-dose BEACOPP, treated the radiation as a fixed point, and that no one said “This could do nasty things to you two decades from now.” As Dr. Sulica pointed out to me when I was choosing between radiation and surgery this time, radiation oncologists never see the delayed side-effects of their treatments; no one at UCLA is going to find out about my carcinoma or my heart disease. Is radiation over-used as a consequence?

Medical Journal: 11/16/18

A little bit of medico-economic comedy, just for relief:

-One of the things I’m supposed to do before the transplant is get all of my vaccinations: not just flu, but the second round of the shingles vaccine, pneumonia, and tetanus/diphtheria/pertussis. The theory is that I won’t be able to tolerate live-virus vaccines in the year I’m immune-suppressed. Dr. Weiss’s office had the flu vaccine on hand, but sent me downstairs to the pharmacy to get the TDAP. The pharmacy reported that my (otherwise pretty good) United Health Group insurance explicitly excluded the TDAP vaccine: that will be $96, please.

So I went to CVS, where they said it would be $60. But when I pulled a long face and indicated that I’d go scream at United, they suddenly decided that there was “a coupon” that would reduce the price to $46. The difference between that and what I thought of as the top copayment through UHG of $35 didn’t seem worth worrying about, so I bought it; it turned out that CVS had someone ready to give the injection, so I didn’t even have to go back to the doctor.

I’m still trying to figure out the logic of an insurance company not wanting to pay for what appears to be a routine vaccination to prevent what must be very expensive conditions.

-My other business at the CVS was to pick up the second month’s supply of Entresto, the fancy new heart med. When they printed out the paperwork, the co-pay –which was $35 the previous month –was somehow $75 instead. Apparently the stuff is so ferociously expensive (list price is about $500/mo.: weirdly, that price seems to be independent of dosage) that UHG slapped on a high co-pay, hoping to drive patients to various off-patent medicines that don’t cost as much. Having to pay out of pocket $900 per year for a medicine I can expect to be on for the rest of my life seemed like moderately bad news.

-But wait! Entresto, too, had “a coupon.” Except this was one I had to sign up for and print on line. (My AT&T cell phone can’t get service on Fifth Avenue, a block from the Empire State Building.) So I went home and got the coupon printed out; it magically makes the co-pay $10 per refill, irrespective of whether the refill is for 30 days or 90 days. I guess what’s happening is that the pharma outfits and the pharmacy benefit managers are playing offense/defense games: pharma ludicrously over-charges for on-patent drugs, the PBMs defend themselves with absurd co-pays to discourage patients from filling those scripts, and pharma retaliates by absorbing most of the co-pay.

Even if all the medical care I’m getting gives me a normal life expectancy, I still don’t expect to live long enough to see a sensible drug-pricing system, with the government supporting drug R&D through some combination of grants and prizes for invention, and patients paying something close to long-run average marginal cost.