THURSDAY, MAY 4, 2023 (C DAY +94)
Last day of chemo for a while. After my June visit with my oncologist/urologist for scoping and restaging, I will receive at least one more “maintenance” bout of chemotherapy with future scopes and bouts at three month intervals.
Last night I felt fairly stressed. Not about the future, but about today. I could see myself as one of the plastic, closed markers or figures in an old fashioned board game. Depending on the game, the players either spin a dial rapidly or roll dice to advance their markers. The number on the dial or the dice indicates how many spaces you advance. But while some spaces get you closer to finishing the game, other spaces on the board are marked “go back five spaces” or “miss a turn” or “start over.” There is little strategy in a game like this, just plain luck or fate which decides on what space your piece lands. So, on the eve of something worth celebrating (my last of six chemotherapy treatments), I instead felt powerless. So Deena–who barely slept herself last night–and I talked for a bit.
By the time Deena and I arrived at the clinic, I was in a cheerful state of mind, especially to see my usual practitioner in the room instead of a strange person. But I had to wait until someone was found who could or was willing to cath me. There was a nurse who processed me in when I arrived, but when he was asked in the hall to prep me for the treatment (including catherize me), he politely declined to do so, saying he never actually did it before and apparently wasn’t ready to attempt it today. With still “no joy” twenty minutes later, I questioned my nurse practitioner whether I should recruit someone willing to give it a try. A family member? A bored bartender? Maybe an Uber driver who watches Chicago Med on Wednesday nights and has secret dreams of going into medicine? But, they found some brave soul and with only a few painful protests from my prostate, this person managed to push, prod and poke the tip of the catheter into my bladder. I advanced five spaces.
I was told that the “dwell time” or time that the Gemcitabine (the first medicine) would be in my bladder was now only one hour, not two. That was fortuituous news for clinics like mine who had more patients than they could manage receiving chemo for bladder cancer. Nor did I protest. Now, the turnaround time was cut in half. While they say you shouldn’t–sometimes you should–look a gift horse in the mouth, and I plan to investigate this policy change shortly.
So, Deena and I rolled the dice again and the space we landed on said “Walk a marathon.” Or something like that. We’re headed to the Bladder Cancer Advocacy Network (BCAN) event this Saturday.
SATURDAY, MAY 6, 2023 (C DAY +96)
We attended the BCAN event with Deena’s sister Debbie and a mutual friend (Delores.) There were about 100 people at the event. I met two other vets with bladder cancer and there were doubtlessly many more people attending whom I did not know. Deena received an appreciation certificate for raising almost $1,500 for BCAN and BCAN’S outreach to bladder cancer patients. My doctor and nurse practitioner were there, and their presence was appreciated. We took a turn on the circuit before leaving for home.
SATURDAY, MAY 20, 2023 ((C DAY +110)
I’ve been off chemo for a few weeks now. I still need a nap in the afternoon, but I can’t say why for sure. The logical assumption is that I don’t sleep well at night, between Sleep apnea, Parkinson’s Disease, PTSD, pepperoni in my pizza for dinner and who knows what else.
Spreaking of Parkinson’s Disease, last week I received notification from the Veterans Administration that I have been rated 100% totally and permanently disabled. This is wonderful news (if being totally and permanently disabled can be viewed in a positive light.) But for someone like me who has been industrious all his life to have his career cut short several years short while Deena faces the possibilty of increasing expenses needed to care for me in the future (such as bathroom modifications–some of which have been made already at our expense–plus doorframes which may need to be widened should I need a wheel chair in the future, a wheel chair access ramp in that case into the house, etc.), whatever disability increase I receive will go to good use. Plus, this casts my Vietnam era experience in a completely different light.
Deena will receive educational benefits on my behalf given my new status, and she is thinking of finishing her graduate degree in TESOL, perhaps to assist people coming to America who need assistance learning the language. I think this would be wonderful assuming it would not be too stressful. but she can pace herself around whatever health issues I might be facing.
Something else (healthwise): Going back to the chart I introduced in February which appears below (with a shoutout to the American Urological Association and the Society of Urologic Oncology), I can show you where I am presently at. Once again, this chart is what oncologists use to guide their decisionmaking process on determining where a bladder cancer patient is at the moment and what needs to be done next. I am at the point indicated by the red dart.
Here is how to read it. Based on my age and other health issues, I am considered an intermediate risk, so my doctor chooses the second grey rectangle from the top on the left margin of the chart (where it says TURBT. Also, see “Frailty Scale” on April 25, 2023 entry to understand what intermediate risk is.) Following the line to the right (trace it with your finger), there are two branches; Induction chemo and BCG. Because of the shortage of BCG, the only option for me was chemo therapy. From the “induction chemo” rectangle, there are two possible outcomes. One is the line to the right which says “Complete response” and the other is the line down from the induction chemo rectangle which says “Partial or no response.” If my doctor finds no sign of cancer when she scopes me next month, then I go on a maintenance schedule of chemotherapy and repeated cystoscopies. If there is cancer discovered, then the algorythmn calls for the removal of my bladder, but my oncologist might have the discretion to order some more chemotherapy before deciding to commit me to radical, surgical removal/resection of my bladder, prostate, and part of my small intestings to craft an ersatz bladder. No doubt my intermediate risk, the chance of blood clots and cardiac events, etc. associated with or following surgery will be weighed against the chance of the cancer spreading to my lymphatic system where it can travel to distant parts of my body (or to adjacent organs as cancer is often wont to do.)
Wednesday Deena and I are headed to Texas to visit our families there.
TUESDAY, MAY 23, 2023 (C DAY +113)
A lot of stress the past two weeks. There was the news from the VA that I’ve been reclassified at 100% disabled. That’s good stress in a sense because it provides opportunities (for Deena as well) that we otherwise would not have. Then, there is the short trip to Texas, trying to accomplish as much as possible in less than a week. Also, one of our family has not been feeling well lately and that has been a cause for concern. Plus, there has been the daily drumbeat in the news (the debt ceiling and possible default, the increasing tempo of war and the prospects of the U.S. being drawn in as a co-belligerent, the murderous rampages across our nation and so on. The one in Allen, TX two weeks ago was walking distance from where Deena and I lived.) Sometimes God uses this inner turmoil when He is trying to get our attention. Then, too, smetimes it’s just depression. So, to paraphrase Freud, “When is a cigar not a cigar?”