Author: Mark Kleiman

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.

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.

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.

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.

Considerably better. Voice still shot. Medium-bad cough. Still very short of breath with even moderate exertion. But I’ve had three full nights of sleep without chemical assistance, and the sore throat is more or less gone.

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

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.

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.

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.

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.