Drink of Choice: A not so proper Cuppa. I’m an American, I’m lazy, so I use Tea Bags. Loose leaf is better and such a mess.
Word of the Day: oligometastatic (more on this later). I’ll give you a dollar if you can pronounce it.
Dear Reader:
The last chapter was a bit violent and gory, what with the tale of being drugged and dismembered and being left for near dead. I apologize if it did upset but fear not; our story does not end there. If I can encourage you to read on, I think you will find- as certainly I have upon reading this- that like a Rembrandt, darkness in one part of our story will accentuate the light on another.
First, a primer. Do bear with me as a general understanding of my disease is needed.
PSA’s- Prostrate Specific Antigens- These are proteins that are generated by the male prostrate gland. Healthy men will have PSA’s in a range from 0-4 (That’s nano grams per milliliter for those of you scoring at home). If, like me, your prostrate gland went rogue and you’ve had the treacherous little bastard removed, any and all ensuing PSA’s are generated by prostrate cancer cells. It is the measurement by which we can judge if the disease is progressing or regressing. What you hope for is that through quasi medieval forms of therapy you can the levels to “Undetectable.” The limit of detection of the assay is .03 ng/ml, so you can never quite be sure that it is all gone. Your PSA’s could be .0275 and you might think that you’d been cured. You would be wrong.
That is what happened to me. After four years of therapy, my PSA’s were undetectable for the entirety of 2021. My Oncologist decided that we would take a “Drug Holiday” starting October 1, 2021. It is the only way to know if the cancer was or was not still present.
January of 2022 they came back with a great and furious anger. They started doubling every four weeks. This is cause for concern; any doubling of less than six months is considered highly aggressive. We re- started hormone therapy- to no avail. PSA’s continued to double every four weeks like clockwork. My diagnosis changed to Non- Metastatic Castrate Resistant Prostrate Cancer or nmCRPC. This an incurable, always terminal form of the disease. There are, however, treatments, specifically physical castration and gonadal blockers. These are like Offensive Linemen in football. They block the hormone receptors in the cancer cells so that even though they are generating testosterone they can’t uptake it. These have been shown to slow the progression of the disease by 30-40 months- real numbers.
Except it didn’t work. I took Apalutamide for two months and the PSA’s continued to double every four weeks. This, dear reader, was the darkness I spoke of earlier. I had about 12-18 months left and they would not be pretty. At some point it would be nothing but Radiation, Chemo, etc… I would spend most of what was left getting treatment.
Two weeks ago my PSA’s hit 2.9. This is very high and very scary. A PET scan was ordered and as you may remember from the last chapter, the last offending body parts were removed. I also changed drugs. I started taking darolutamide. This is a cousin drug to what I had been taking. My oncologist was not optimistic. It is like the difference between taking aspirin or tylenol after you’ve managed to cut off your arm in an event involving too much alcohol and too many power tools. But what the hell. Why not.
If you have managed to stay awake through this you are a better man than I Gunga Din. But, in a bit of foreshadowing, you will soon see that it will have been worth it- so far. So on to the light.
I had my my appointment with my oncologist yesterday to check my PSA’s and discuss the result of the PET scan. I was, as you might imagine, a bit anxious. In a cruel twist of fate, something got screwed up and I ended up waiting two hours past my appointment time. Other patients were coming and going until I was the only one left. Excruciating.
But as cruel as the gods are, they can, rarely to be sure, be gracious. When my Oncologist finally got to my room he started with, “I have good news.” He has said this never. In five years I do not go to Oncology for “Good News” as it is not usually forthcoming.
My PSA levels, in two short weeks, dropped from 2.9 to 2.0. A 33% decline- in two weeks! Not only did we stem the tide, but we turned it around. The little fuckers were dying off! Incroyable!
The PET scan did reveal a teeny tiny tumor on my 5th rib, left side. A very brief- three to five day- course of radiation should zap it back to where it came from. It is called oligometastatic cancer- a treatable form of metastatic cancer. I am still avoiding the dreaded Stage IV designation which is when things get all pear shaped.
I woke up yesterday thinking I had 12-18 months left to live. I went to bed knowing that I have 30-40 months and perhaps more. What is so critical is that 30-40 months is enough time for new treatments to emerge and get FDA approval. 12- 18 months is not unless they are already on the FDA’s desk. I got a reprieve from the Governor.
My oncologist still thinks that this might- I emphasize might- be curable. I told him that no one has ever been cured of this before. He said, “I know,” but maintained his belief. Not enough to hang my hat on, but still.
I have lived some 22,000 days. Like most humans, most of those days were a Joyce novel- wake up, work, eat, sleep. Wash, rinse, repeat. Some days are different. Meeting your spouse. Marrying your spouse. The birth of your children. Watching said children grow up to be healthy, strong, intelligent adults. A few others, but you get my drift. Yesterday was such a day. By the end of it I was emotionally spent. Believe it or not, I did not even have a drink. Didn’t need it.
If you have come this far, I know that you have been keeping me in your thoughts, praying and general hoping for the best. I cannot tell you how much this means to me. Dealing with cancer can, per force, be a lonely experience. Thirty- nine days of radiation where you are literally the only human in the room, disconnected from other humans by a twelve inch thick wall, alone with a huge machine that while trying to save you is also killing some of your favorite bits and bobs. Scans, too numerous to count, where again you are alone with a machine that makes strange noises and you don’t really understand what it is doing. Yet even in your loneliness you know that you are not alone. Thank you for that. Really. You have no idea how incredibly much to helps.
What now? I am taking a month off. Spending all of August at Lake Kabetogama in Minnesota. I’ll catch a few fish, eat them, read a book or two. Reflect. I have been granted a gift. I can still write one more chapter before we get to the epilogue. Which is more than I had yesterday.
Thank for reading.
Peace, Love,
Jay
My Year as a Eunuch 