Well, I’m back after a long absence and having not posted for many months. I want to let my readers, the few who remain and who may be alerted to this post, that tomorrow I will go to Concord Hospital in Concord, New Hampshire for surgery to remove my left kidney and left ureter, and to re-biopsy my bladder. What follows is my account of how, almost purely by chance, I have arrived here, diagnosed with “invasive, poorly differentiated carcinoma” (but non-metastatic)
of the ureter and bladder. (I’m having trouble with this damned block editing and find now that the above paragraph cannot be edited!). What I tried to write above was that the cancer is so far non-metastatic but as it is a high grade urothelial cancer, meaning aggressive and fast growing, it could metastasize at any time. That said, it has not yet done so. So how did I get here, on the eve of major surgery? That’s the story I’d like to relate.
Back in September or maybe October of 2025, after having read about a study done on elderly patients with some evidence of cognitive decline, who seemed to improve significantly when given daily micro doses of lithium orotate, I asked the psychiatrist, with whom I meet twice yearly largely just to continue getting my narcolepsy meds, if a tiny dose, truly a micro dose of 1-5mg of lithium orotate, would be worth trying. She is aware of my fear of developing dementia, and responded that it was worth a trial, that it could do no harm.
So I ordered a single vial of Lithium orotate, 5mg, and soon began taking it. I noticed nothing in particular, no changes, no side effects either. But after a month of taking it, and during a routine visit to my PCP, I mentioned the tiny dose of lithium I’d had added to my daily pills, and I asked him to check my kidney function, just in case. Well that “just in case” turned out to be if not precisely providential, at a minimum it was just in time lucky. Because we learned that my kidney function had dropped significantly since it was last tested in April 2025.
At first my PCP chalked this drop to my having taken Lithium orotate, and as I had immediately stopped taking it after seeing the kidney test results, he figured my kidneys would heal and that the numbers would return to normal. But I think he must have rethought this, as he ordered some additional tests. First he had me have an ultrasound of the kidney vasculature, as I had developed stubbornly resistant hypertension. This came back as entirely normal. Then a little later, he asked me to schedule an ultrasound of the kidneys themselves. I was out of state at the time, taking care of a dear friend’s cats while she was in the hospital, and I spent an additional week helping her once she was discharged. So it took me maybe 4 weeks to get this second ultrasound scheduled and done. And the results were not at all what I had expected.
This test showed that my left kidney was severely distended due to an unknown blockage, probably in the left ureter, which was preventing urine made in the kidney to drain normally into my bladder. This condition is known as hydronephrosis and as it was rather severe, I went in for a CT scan (with contrast) of my kidneys and my abdominal organs. When I got the results, I was surprised but not entirely shocked because of my first foray into ChatGPT had suggested this might be the diagnosis: urothelial carcinoma, later qualified as high-grade.
Since then it has been a whirlwind of tests and appointments. Because the large medical center to which many Vermont residents go when Brattleboro Memorial Hospital does not provide the services needed could not even get me in for a preliminary appointment with a urologist until April 16, my PCP suggested I try a smaller hospital with a urologist-surgeon he particularly liked. He sent them a referral and the very next day I got an appointment at Springfield Hospital. This was on a Monday in March and the appointment was for Wednesday.
Martha, my one remaining sister, herself a breast cancer survivor and an APRN to boot, offered to come with me and I gladly said yes. On Wednesday late morning, she picked me up in her truck and we drove the 45 minutes up to Springfield Hospital. From the start, this hospital has been truly a wonderful place. We arrived 30-45 minutes early but were immediately taken into an exam room, where Leanne, a very competent and kind PA explained that the first procedure I needed was to have a stent placed in the left ureter, in order to drain my kidney and let it heal. Although this was a surgical procedure, it would be day surgery and I would go home afterwards.
Stent day arrived, just a week later. Colette, a friend, drove me to Springfield Hospital and waited while the procedure was done. When I woke from the anesthesia, the surgeon told me he had not been able to place the stent between my kidney and bladder, he said, because the tumor was too big. He couldn’t even pass a wire around it. “Tumor?” Thid was the first time I had heard this word, but he sounded more hopeful than before. As he left he said he thought the bladder looked red and irritated but not cancerous. So surgery to remove the left kidney, which was all but nonfunctional now, and the left ureter might just be all I needed. “Chemo?” I asked. He looked at me, shaking his head, and said, “There may be no need.”
Fast forward now to the biopsy results, which I found one morning in my springfield hospital patient portal. The surgeon had not been correct, I understood, reading the words, “invasive, poorly differentiated carcinoma of the bladder”. Not at all the good news I had been hoping for. So I had to readjust my thinking, from having a possibly curable cancer, to having one that could metastasize and was characterised as aggressive and fast growing.
Martha drove me once again to Springfield Hospital to discuss biopsy reports with the urologist/ surgeon. Just as we arrived I found my chest CT scan reports in the patient portal and with my heart in my throat, I proceeded to read…and finally read out loud as Martha was parking the truck, “No metastases or lymph node involvement”… I smiled with huge relief. This was one splash of good news, which I welcomed, after what had seemed a tidal wave of bad news.
(still don’t understand the block editor! Why can’t I edit any paragraph I’ve already written? Why can’t I correct typos? This is so frustrating!) We — Martha and I — went directly to the Urology Department, and were shown into an exam room as before. I thought we’d be meeting with Leanne and maybe also the surgeon, so I was surprised when the surgeon strode into the room, and sat down, introducing himself with his first name, and not just that, but a shortened form of it! I must tell you that I really dislike it when a young doctor introduces himself calling himself Dr XYZ but then proceeds to call me Phoebe! I usually tell these sorts that I prefer to be called Miss Wagner if they are going to call themselves Dr. But this surgeon, and surgeons are often the worst when it comes to asserting a hierarchy of power, was different, and told us his first name right off the bat! This endeared him to me immediately and I listened carefully as he presented us with 3 options for going forward, as he saw it. One was to schedule removal of the kidney, ureter and bladder in one fell swoop. This would not be minor surgery and recovery would be difficult. But it might eliminate the cancer entirely. Unfortunately he could not get me in for that on April 9, but on that date he could remove the kidney and ureter and re-biopsy the bladder. This second deeper biopsy would tell us whether the bladder muscle had been involved or not. The difference between MIBC and MNIBC, that is between Muscle invasive bladder cancer, and Muscle non invasive bladder cancer, can be important. In MIBC the only option is the remove the bladder, unless the cancer is localized in one place, in which case I imagine it could be resected and the rest of the bladder spared. In NMIBC, there is an opportunity to use various chemo therapies and to retain the bladder, which most people want to do. Then there was the third option, which I no longer recall. Talking with the surgeon and my sister, I decided to go ahead with the April 9 date and surgery to remove the kidney and ureter.
The biopsy that will also be done will give information on how far the cancer has gone. So it’s that MIBC versus MNIBC question that need to be answered.
Tomorrow is my date with surgery, April 9. I think all will go well, and I hope I wake up with my usual equanimity intact, pain or not. But we will see. In any event, I just wanted to let readers who still follow me know what’s up.
take care, all of you!
Phoebe
forgive the errors and typos but I cannot correct or edit anything!
