Immediately after the biopsy, my wife and I were given the news: Metastatic prostate cancer with spread to multiple bones. No need to wait for the biopsy results to make the initial diagnosis and start treatment with a shot of Eligard that same day. The biopsy and a subsequent bone scan would later provide more details, and I suspect provide the documentation needed to get my insurance to cover aggressive treatment, and back up my disability claim.
After that came a diagnosis of bladder cancer, because one cancer simply isn’t enough. Then radiation to the spine, bladder surgery, and chemotherapy. Through it all the only thing that was ever said to me in terms of prognosis was “I have patients that have lived 10 years with this”.
Fast forward to today, my cancer-versary. I’ll be celebrating by running a half marathon tomorrow morning. That effort will be slightly complicated by some back and hip pain that’s flared up in the last few weeks, but I’ll deal with it. The biggest fear I have is sleeping through the alarm and missing the race. That’s my biggest fear for most early morning races.
I’d also like to take a moment to recognize my bladder cancer, which doesn’t get the respect it deserves. My dad battled bladder cancer for about a decade before succumbing to what is best described as complications of treatment. My biggest fear prior to diagnosis was following in his footsteps of repeated surgeries and recurrences. Yet somehow, I hardly ever think about my bladder cancer. It shows how serious my prostate cancer is when it allows me to almost forget about the bladder cancer.
Fatigue and Pain
“Hey doc, those shots you give me don’t cause me enough fatigue and joint pain, is there something else you can do?”“How about adding a flu shot?”
“Sounds great!”
For most men with my diagnosis, treatment continues for the rest of their life. Prostate cancer, having started in the prostate, relies on testosterone as signal to grow and flourish. Take away the testosterone, and you can stop the prostate cancer in its tracks, for a while at least. Eventually the cancer mutates and finds a way to grow and flourish without testosterone.
The cheapest and easiest way to take away the testosterone is a surgery called orchiectomy, or more bluntly, castration. The downside of course is that it’s irreversible, and most men including myself really don’t want to have our balls cut off.
And so we go to our doctors every three months to get a shot to suppress testosterone. This isn’t much fun because the shot has its own side effects in addition to the very real side effects of having no testosterone.
What’s really annoying is that I was doing exceptionally well in late September, then had the inevitable “two steps back” week, caught a cold, got my injections, got my flu shot, and generally got a very clear reminder that I’m still a cancer patient.
At my lowest point, I found myself wondering if an orchiectomy would be preferable to getting a shot every three months. Quite literally, I’d give my left nut to have fewer side effects, and my right one too! But at the moment I’m still holding out hope that I might be in the very tiny minority of men that can eventually go off treatment for a while and not have the cancer come roaring right back. Or maybe there will be an immunotherapy breakthrough which could have the potential to be curative.
Body Changes
My body has gone through some drastic changes in the past year. Many healthy men have difficulty coping as they gradually go bald over many years. I’ve had to cope with going from a wavy ponytail, to having a gollum comb-over, to having a head full of unmanageable curly hair all within a year. And it’s quite possible my hair will go back to wavy in time.I wonder sometimes why I still feel like a cancer patient, while my hair is showing visually the drastic changes that are going in my body. If my hair follicles are having trouble adapting to treatment, chances are many other cells in the body are too. Certainly my blood tests are showing that my immune system and platelets are still trying to recover after the nuclear and chemical warfare.
It’s taken most of this past year for the emotional numbness that got me through diagnosis and months of chemo to begin wearing off. In addition, lack of testosterone makes men more emotional than normal. I’m now starting to emotionally process everything with hormonally enhanced emotions. I can’t find the words to describe what it’s like, other than to say “roller-coaster”. “Holeee ^&*@* also comes to mind”.
And then there was that moment, while bending over to towel off my legs after a shower, when I noticed that my pectorals seemed to be hanging a little lower than usual. Actually it wasn’t the muscles, but a small layer of fat that gravity was acting on, causing my skin to hang there and wobble. Hey look! I’ve got an iddy biddy man-boob! But it’s nothing you’d notice when I’m dressed unless I stuff my man-bra.
So… man boobs and thoughts of having my balls cut off. That’s gotta put a few demerits on my man card. Try to process all that with an emotionally enhanced brain.
Work and Writing Code
One of the brighter spots of the past year is that I’ve returned to work and am doing well, both in terms of my enjoyment of work and my job performance. At its best, my job involves writing software to solve problems. It’s sort of like the ultimate puzzle game. When I was a teenager, I used to spend hours on end in my bedroom writing BASIC and assembly code on my Apple //e for fun.
Now I do the same thing in C++ and get paid for it. Of course, like any job there’s the work aspect involving deadlines and meetings and generally trying to keep other people happy. But recently I was able to spend several hours alone reworking some code so we can add new features to it. To complete the high school flashback, I had Cyndi Lauper playing on my headphones. “Girls just wanna have fu-un”... and there’s another demerit for my man-card.
What’s Next
I’m doing exceptionally well. Some people are diagnosed when they aren’t healthy enough to tolerate treatment. Others don’t respond to the first treatment and then are too weak to try other treatments. Collectively these are the cancer patients that fall far short of the survival statistics. Happily I’ve proven not to be in that group.If there’s a silver lining to my diagnosis, it’s that prostate cancer is hormone sensitive. While life without testosterone kinda sucks, it is a treatment option that isn’t available in most cancers. Many men can keep the cancer away for years and years through hormone treatments alone. My initial response foretells that I am likely to be one of them, but there are no guarantees.
Everything is looking good for me right now. I do have to deal with treatment side effects, but have largely figured out how to control those through a combination of sleep, exercise, and more medications (as I’ve said before, I’m a human chemistry set).
It is vitally important that my prostate cancer stays under control, and my bladder cancer stays away entirely (my urologist says I’m cured, but I’m still holding my breath). My body needs time to continue healing and recovering from radiation and chemotherapy. I must stay in otherwise good health so when the time comes to go onto the next treatment I’m healthy enough to withstand it.
And of course, staying healthy will help keep the cancers away. In my more optimistic moments, I even dare to hope that a complete lack of testosterone will keep the cancer in such a deep slumber that my own immune system is able to slowly pick away at it, and won’t have the chance to figure out how to work around the treatment. Maybe one day, I’ll even be able to go off treatment and find that any remaining cancer cells are so scattered and disorganized that they can’t get together and form a tumor.
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