My Journey With Our Complicated, Dysfunctional Health Care System
Posted on June 1, 2025
Filed Under Culture, Main, People | Leave a Comment
I’ve been fighting bladder tumors on and off for seven years now and, until recently, had beaten them back. In September, 2025, my urologist found a polyp in my bladder and scheduled a TURBT, which is a same-day in-and-out Bladder Tumor Removal Surgery. In November I had his procedure and this time, however, the tumor was malignant, and I was to be referred to an oncologist.
The urologist dropped the ball and delayed my referral to an oncologist. The New Year came and went and in early January I had an attack of sciatica that knocked me out — so much so that I was taken to the hospital by ambulance. While there — for more than a week — I was stuck and pricked and prodded by Torquemadas with medical degrees — and an MRI to assess the damage to my back revealed some bad news about the bladder tumor — it was not just a “polyp gone bad” but it was a mass that had obstructed the ureter in my right kidney, partially blocking flow into the bladder — basically, renal failure. So the nephrologist performed a nephrostomy (basically, a tube inserted into the kidney and out the side of my back into a bag to drain the kidney).
I’ve seen so many specialists and doctors and nurses and been to urgent care so many times now that my head is spinning. I’ve been battling cancer on two fronts: the disease itself and a bureaucratic health care system.
It started right off when my medical group took weeks to approve visits with specialists (urology, oncology) and then set up a PET scan (which pinpointed the spread of the cancer); then more weeks to approve the chemotherapy. The miscues with doctors and nurses are legion. When I requested a blood pressure monitor, I instead was offered a cane. I was diagnosed with anemia (no big deal) during my hospital stay in January yet I was never told about the condition until mid-April — and not by my primary care physician but by my oncologist. My medical group said they would provide me with information on how best to handle anemia (pills, nutrition) but they ended up offering me a class on diabetes. When it came time to have the catheter tube in my kidney replaced (every ninety days, although my urologist didn’t inform me of that, I found out from another source), the hospital ended up giving me the wrong bag and tubing, which leaked the very next day; my urologist replaced it with the right bag and tubing (that set-up also leaked but that’s not the doctor’s fault). The dressing around my catheter needs to be changed every couple of weeks but the home nurses that visited me to make the change invariably caused me so much pain that I had to go to urgent care. Sometimes I feel like the Lenny Bruce of healthdom.
I’ve been through two cycles of chemotherapy so far and fortunately the side effects have been minimal — no hair loss, very minor nausea, just some fatigue and occasional dizziness. The only problem was a rash and swelling in my right leg, and the pain got so bad that I had to go to urgent care. The doctor there ordered an ultrasound to rule out a blood clot — but ordered the ultrasound for the LEFT leg! I straightened that one out (no blood clot in the right leg). I’ve spent so many hours in waiting rooms and hospitals and urgent care that I feel incredibly worn out. And I’m constantly in pain.
But I’m pushing ahead. Trying to get the mental energy to continue my infamous “Letter from LA” (which will now be “Letter from LAncaster” — there’s a lot of irony going on around here). I’ve been thinking a lot about time/memory/entropy (“The Order of Time” by Carlo Rovelli), the beauty inherent in things (“The Voice of Things” by Francis Ponge) and committed myself to the first volume of Proust’s “In Search of Lost Time,” one of the most stunningly beautiful works of prose I’ve ever read.
Happy summer.
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