SUNDAY, JUNE 4, 2023 (C DAY +125)
This is my cancer journal for 6/2003. I’m ten days away from meeting my urological oncologist again. After she scopes me, I may see what is on the immediate horizon. It will likely be either be surgery or more chemo. Meanwhile, Deena and I have decided to move forward with our lives, subject to what may or may not be confronting us during the last part of this year. Deena is planning to start graduate school this fall either in Albany or New Paltz. She wants to major in TESOL (Teaching English to Speakers of Other Languages), which is offered in the NY State University System (CUNY) as an MS in Education. We also hope to make a few short trips to New England, perhaps a longer visit to Maine in early fall. We’re hoping her two grandsons might be able to visit us, and my son is planning a trip as well after he finishes his leadership training program with FEMA.
I saw my family doctor last week. My cardiac enyzmes are normal as are my liver and kidney function tests. My PSA is very low, which suggests the my prostrate is cancer-free. My fasting glucose was normal, but my A1C was a bit high (6.2.) That’s considered to be “pre-diabetic,” and I need to try to bring it down below 6.0. The A1C test approximates the average serum glucose level in a person’s body over the past few months, regardless of the glucose level at the moment. I wanted to check my CBC differential (breakdown of types of blood cells) but the tests seems to have gotten lost.
I haven’t slept well the past few weeks. Two weeks ago while in Texas, I was in strange beds in unfamiliar houses. During the week since we’ve returned from Texas, I’ve had insomnia, night sweats after actually falling asleep, and very vivid dreams. I’m not on any new meds, so perhaps this is part of the aging process.
SUNDAY, JUNE 11, 2023 (C DAY +132)
It’s Sunday, June 11th, and I’m ready to start journaling again because I have some cancer related appointments this week before beginning therapy again.
During the last six weeks, things have gone well as far as cancer goes and to the best of my knowledge. I’ve had some mild Parkinson related issues, but otherwise my physical health is pretty much unchanged. Mentally, I’ve been mildly stressed, mostly because of the events confronting the country and the world, our extended families, a trip out-of-state and so on.
“. . .bladder cancer has the highest recurrence rate of any solid tumor.”
Tomorrow, I have a dental cleaning and then Deena and I drive to SUNY-New Paltz. Deena is enrolling for fall classes to get her graduate degree in TESOL, and I’m so proud of her for many different reasons. My “job” for the next few years is to be a good husband for her, continue with my independent studies and so on. I’ve started working with an artificial intelligence (AI) program which will make my blog avaliable to people in different languages if it pans out, so I’m exploring that at the moment.)
Deena’s challenge will be to assist me as needed while moving ahead in her program. These studies will make her more proficient and marketable among the rapidly growing population of immigrants coming to America who want to learn our language. I remember when my late wife was critically ill and I felt powerless. That’s an unpleasant feeling that many of you reading this may have experienced first hand. It may seem somewhat heroic to be your spouse’s caretaker, but as weeks of caring turn into months and months into years, you feel (or at least, I felt) like an empty shell when the curtain falls. You have bits and scraps of your life to piece together until your own time to exit stage right. That could be one year or ten years or more. I’ve learned that time is a resource that we’re given (like opportunities, talents, perhaps money, etc.) and we should not squander this. And, while we are certainly not masters of our destiny, we should consider and be ready for at least the more serious contingencies.
I remember when Deena was preparing to travel to Ireland this spring with her family. She had every detail planned out; she made certain her passport was current, how she would get to Ireland, where she would be staying, where she would visit, how long she would be gone, who would be available if I needed help, etc. You can’t just leave on a moments notice.
One thing certain in life is death. Is this something we’ve prepared for, thought about? Of course, there are advance directives and powers of attorney for our health care, wills to be filed and sometimes custody arrangements if we have minor children. But those all deal with our departure from this existence. Have we considered what might await us as we cross the “rainbow bridge” or travel beyond the veil1?
On Tuesday, I have a repeat CT scan of my lungs. There was an “indeterminate 5 mm solid nodule near the middle right lobe” of my lung that needs to be re-examined in the context of my bladde cancer. I don’t think it’s anything to worry about (e.g., metastasis) because my cancer seems to be confined to my bladder. If could be something else, however and maybe Tuesday afternoon I’ll find out.
On Wednesday I see my oncologist/urologist for a cystoscope and the plan for the next four months. Stay tuned for updates.
p.s. I’d like to thank everyone for the kind words in their beautiful cards that I’ve received. I’m not some super hero, however who eats Wheaties for breakfast every day. What I’ve experienced so far this year in terms of surgeries, treatments, and chemotherapy are just “baby-steps” in the course of a disease that can be positively as devastating as it is deadly. The real measure of my mettle is yet to come.
WEDNESDAY, JUNE 11, 2023 (C DAY +135)
The CT-scan of the pesky enlarged lymph node near my right lung came back as most likely benign and the radiologist suggested there was no need to monitor it in the future unless there were some clinical signs or symptoms that something was amiss. This was noted in spite of cancer elsewere which is hopefully/was hopefully confined to my bladder.
However . . .
My appointment to be examined by my urological oncologist this afternoon was rescheduled to July 12, 2013, because the physician is ill. Deena and I wish her a speedy recovery, but we’re disappointed, and a bit alarmed, at the additional delay in scoping me, restaging me as needed and resuming chemotherapy. As a determinist (one who strongly believes in fate), this is not a major concern because I have confidence in the doctor, don’t have an uneasy feeling about the delay, and do not see many other options. But Deena is more indeterminist than I am in that she doesn’t easily take “No!” for an answer and makes things happen. We just don’t know whether an additional month’s delay puts me at further risk or not. One way or the other we’ll find out.
MONDAY, JUNE 19, 2023 (C DAY +143)
We left word with the schedulers at the Urological Institute that we are available on a moment’s notice for me to have my cystoscopy (there is no formal prep to my knowledge except perhaps to avoid aspirin products in the event of a biopsy.) Deena has a hunch that there may be another patient who cancels at the last minute some time before my July appointment. I just don’t have a leading one way or the other at the moment.
We celebrated Father’s Day together. It was a very enjoyable occasion and Deena prepared one of her awesome German meals (Spätzle and pork with red cabbage.) Wunderbar!
WEDNESDAY, JUNE 21, 2023 (C DAY +145)
I received a phone call today to say that my oncological urologist has a spot open a week from today (June 28th) so I will be able to see her and get scoped sooner rather than later. Excellent! Waiting is one of the hardest things to do when it comes to serious health issues like heart surgery or cancer. I suppose it is like waiting for a jury verdict or some other important information. You sometimes almost want to hear bad news rather than no news at all. At least then, you can start dealing with it. But in my case, I know what the options are before I hear back from the doctor.
FRIDAY, JUNE 23, 2023 (C DAY +147)
Deena and I are having a quiet day after our granddaughter graduated from middle school yesterday. The high school held a ceremony on their behalf.
I think Deena is a bit more preoccupied with my appointment next week than I am at the moment. I understand, completely and appreciate that. I try to push it out of my mind, because when you are in your mid-seventies, you only have a certain amount of energy and I don’t want to squander it on something next week that I have no control over as it is. God knows what is going on, I’ll let Him worry about this. Meanwhile, my urine appears clear, so that may be a good sign.
MONDAY, JUNE 26, 2023 (C DAY +150)
My cystoscopy is the day after tomorrow. Urological oncologists use these procedures to revise the stage of bladder cancers if necessary. Because I see no trace of blood in my urine, I’m hoping for a good report, but then one never knows. Today, I get to care for Deena who is have serious muscle-centered pain near her right shoulder and wrist.
WEDNESDAY, JUNE 28, 2023 (C DAY +152)
Only four hours or so away from seeing my oncologist and presumably getting scoped. This morning I helped Deena get ready for her interview with her graduate advisor and now she’s at an orthopedic clinic for an evaluation. I feel pretty good.
I just finished with the cystoscopy. No signs of cancer, but a lot of scar tissue that hung and swayed from the “ceiling” of the bladder like curtains in a dark room caught by a stifled breeze. It was fascinating, Stygian even. Like scenes from a deep sea robot that explores a room in a sunken ship. Occasionally, a piece of scar fabric would fall off when nudged by the end of the cystoscope. And these views I’ve never seen before are of me!
My doctor irrigated the bladder to scoop up as many floating cells as possible. I’ll get chemo once a month for three months, then another cystoscopy. Next January, I’ll get another CT of the pulmomary nodule near my right lung. My doctor said she was “happy” with the results today. If she is happy, then I’m happy. Thank God for His goodness and mercy.
THURSDAY, JUNE 29, 2023 (C DAY +153)
It’s 2:30 a.m. Things always seem different when the world around you is asleep. Where I live, this is the time the deer eat your flower bulbs and the bears raid your bird feeders; under your noses, while you sleep. Except, I’m not sleeping. And how many of my neighbors with cancer are likewise awake? What are their thoughts at this very moment?
I am truly grateful to God, to my loving wife who has stood by me and cared for me, our families and friends and strangers whom we have never met for their thoughts, prayers (and matzo ball soup) these past six months. We are also grateful for a loving and highly skilled care-team at the clinic.
Now, at 2:30 a.m., I feel as if I have been suddenly released from some Soviet-era gulag in Siberia.2 In that camp, inmates are no strangers to pain suffering, and hopelessness. It’s like one of Dante’s Circles of Hell. Men, women and children alike are housed for years and years with all sorts of sentences, punishments and deprevations until, in many cases, their release comes only in death. My experience thus far in the gulag has been relatively mild. When I’ve been made to feel pain, it was only a signal to me that the pain could be much, much worse. But my metaphorical “jailer” suddenly released me yesterday with the grim reminder that charges have not been dropped, and the authorities know how to find me.
I recall the Russian exile Aleksandr Solzhenitsyn living in Vermont almost half a century ago. He spend years in the gulag. I wonder what he was thinking at 2:30 a.m.? Part of him was free in America, but another part of him was not. It was half a world away in his gulag, with those in agony who remained. Had I met him back then knowing what I know now, and had he asked for my advice, my advice would have been to live each day in freedom as if it were your last.
That’s what Deena and I plan to do.
FRIDAY, JUNE 30, 2023 (C DAY +154)
Just got a call an hour ago from the urology clinic. I have my first chemotherapy treatment (second round) this coming Monday with the second chemotherapy treatment on August 3rd. My next cystoscopy is the end of September. This is a different schedule than my oncologist prepped me for because she originally planned for three chemo treatments before the next cystoscopy. I wonder whether she might have gotten back the cytology on the cells she captured on Wednesday while scoping me then, but there is no pathology posted yet on the portal. More likely she just wants to stay on top of my cancer because it is high grade, so she’s beong extra cautious. Status: High risk non-muscle invasive bladder cancer (Hg Ta>3cm.)
Last entry for MY CANCER JOURNAL (6/2023)
Click here to access July.
Footnotes
1Veils are not used very often at funerals anymore. But whether on the face of a deceased, on the casket, or certain times in churches, the veil represents death. Different cultures have embellished this notion and others (like in the U.S.) have largely abandoned that custom. The apostle John speaks of the death of Jesus from the perspective of the resurrection and refers to the “cloth that had covered his head (John 20: 1-9.) Catholics identify this particular piece of cloth as the Shroud of Turin where it is stored with–according to legend–a full length image of Jesus burned into it. The “rainbow bridge” is the connection between earth and Valhalla in Norse mythology that Viking would cross after being slain in battle. Today it is commongly used in the context of beloved dogs and cats who have died.
2Again, my thoughts are not to be construed critically or interpreted literally, but rather a feeble attempt on my part at allegory. Deena and I are entirely pleased with the care and support I am receiving from my health care team.