I have always tried to be honest about my health. Still, it’s difficult to share about one particular malady that’s been vexing me these past months.
One of the treatments I had in the last year – most likely the chemo I received prior to the CAR-T that knocked out my cancer – did a real number on my bladder.
The toxins in the chemo apparently damaged my GAG layer. That’s the protective boundary that keeps the acidic urine from irritating the bladder wall itself. (To amuse myself with this new terminology, I will sing the “gag me with a spoon” line from Moon Zappa’s 1982 epic, “Valley Girl.”)
When I went to my urologist to complain about the constant burning and urgency “down there,” he ordered the bladder operation I wrote about in a previous column.
The pathology showed no cancer, but it did point to severe inflammation of the GAG layer. And by severe, I mean the pain has become unbearable. It’s a catch-22 situation. The better hydrated I am, the less concentrated the urine and the less pain it causes. But the more I drink, the more the urgency dominates.
“Most people just live with it,” my urologist told me, in that blunt Israeli way.
“I’m not most people,” I shot back.
We first tried a low-dose course of steroids – the same prednisone I had left over that may have saved young Ethan’s life during the High Holy Days.
Steroids were not my urologist’s first choice; he didn’t even know the dosage to give me or for how long. I asked my “shadow doctor”: AI. When ChatGPT supplied what seemed like a non-hallucinatory answer, he readily agreed.
Plan B: What is hyaluronic acid?
The pills, unfortunately, didn’t work. Worse, it resulted in “rebound” pain more intense than when it all started. That left us with Plan B: hyaluronic acid (HA) instillations directly into the bladder.
HA is a molecule found in the body that helps hydrate skin, lubricate joints, and cushion tissue. Since it’s very effective at retaining water, HA is commonly used in eye drops, wrinkle fillers, and as an aid in wound healing and tissue regeneration.
HA is naturally present in the GAG layer, so adding extra HA can fill in any missing patches to shield the underlying tissue from irritants and bacteria. Exactly what I needed.
Sadly, there’s only one way in. I was so hoping the steroids would work, but since my symptoms were making it difficult to be more than 10 seconds from a bathroom – not helpful if you’re playing in a typically toilet-less Israeli park with your grandkids or stuck in your seat during an airplane’s final approach – I decided to instill the bullet, so to speak.
It was to be the ultimate acid test (minus the Ken Kesey psychedelic antics).
HA instillations are quick but must be repeated every week for eight sessions – that is, a full two months – and you don’t usually feel relief until about three-quarters of the way through.
Something to look forward to every Monday morning.
I’LL SKIP to the good news first: The instillations weren’t as bad as I’d imagined. Tal, my initial HA nurse, grew up partly in Chicago, so he was able to explain what he was doing in fluent English, which already put me more at ease. Of the three nurses I worked with over the course of the treatment period, only one spoke no English.
The nurses use a “baby catheter” – the thinnest one available – and lots of numbing lidocaine gel. Getting the lidocaine in there was actually the most painful part. Once the local anesthesia kicked in, I barely felt the baby catheter.
Next comes the HA itself. As the fluid filled me up, I felt a not inconsiderable amount of pressure, like I had to pee right then and there (which, of course, I couldn’t with a one-way catheter blocking any exit).
The whole process, thankfully, takes less than three minutes.
When the instillation is done, the catheter comes out, and the hardest part begins: You’re not allowed to use the bathroom for at least an hour. Of course, that’s all I wanted to do. I hobbled around the hospital corridors and eventually shoehorned myself into my car to drive home.
Would I have preferred to be knocked out by general anesthesia so I wouldn’t feel a thing? Sure, but total body sedation for such a short procedure would have been both overkill and cumulatively dangerous.
HA is not covered by Maccabi, our local HMO, so you have to buy it from the manufacturer; if you have private insurance, which thankfully we do, you’ll get reimbursed. However, my doctor recalled that I had done several rounds of radiation to reduce my tumors in the past. Is that what caused my GAG layer damage? Hard to say, but Maccabi’s regulations say that if the inflammation may have been due to radiation, the hyaluronic acid is free.
The only thing worse than the HA instillation itself is the weekly anticipation. I’d rather be looking forward to a nice hike or one of the brisket sandwiches from Bruno (the best sandwich shop in Jerusalem). Moreover, I sleep poorly as a general rule; knowing you’re going to get a spritz of acid followed by a wobbly afternoon does not engender a restful night.
I’m writing this at the end of my eighth week doing HA. It seems to be working a little, but not fully. It can take a while to really settle in, apparently, so I go back now for monthly “maintenance” sessions. I’m hopeful that, in the end, three minutes of discomfort to dislodge months of misery will be a bargain worth taking.
In the meantime, I’ll do my best to gag any layer of complaining.■
The writer’s book TOTALED: The Billion-Dollar Crash of the Startup that Took on Big Auto, Big Oil and the World has been published as an audiobook. It is available on Amazon and other online booksellers in print, eBook, and Audible formats. brianblum.com