So it turns out that permanent disability is the least of my problems. Death is my real problem.
If you read me regularly, you’ll know that I had a brain tumor removed on November 29. The good: the surgeon removed the whole thing. The bad: it’s cancerous, and not the kind of cancer likely to be cured. So I have to consider the fact that I won’t be here much longer. “Much longer” though may be years.
Not that I won’t take steps to try to keep it in check. Radiation and chemotherapy begin on December 27. Fortunately, I don’t have to go far for treatment; I can get it done at a local hospital a few miles from my house. I was there Friday getting briefed and set up. This included a contour plastic mask of my face designed to completely immobilize my head during treatment. Working with a team of oncologists at Massachusetts General Hospital, over six weeks my brain will get zapped with precisely targeted beams of radiation. The idea is to kill anything new that develops, and it will develop because while the tumor was removed cancerous cells are still there.
It’s possible but extremely rare for patients to be “cured” from this form of cancer. I didn’t even know this was possible. But as I live in an age 55+ community, the population includes some retired physicians. One of them told me he knew of a case while cautioning it’s an extreme outlier. In short, there’s little reason for me to place any particular hope in that I will get lucky too.
Dying of course is the inevitable outcome of living, but, darn it, it’s not hard to feel pissed. I had plans for the next twenty years. The point of assembling a lot of retirement assets was to enjoy as much as possible the last part of my life. There’s no one to blame here. The cancer cells were manufactured by my own body. This falls into the general category of shit happens. I just assumed it would happen to someone else. If it takes my life, I will be the first of my siblings to die, and I was fifth of eight born.
While any cancer is bad, there is one small advantage to brain cancer: you won’t feel anything. There are no pain nerves in the brain. But since it’s a neurological disease it will eventually not allow my brain to control my body. It’s mainly a question of what fails first that determines the quality of life I will experience.
Right now it’s all surreal. I’ve been getting physical therapy and at the moment I have no symptoms. I’m cleared to walk where I want and today walked two miles without an issue. I bring a cane with me but I don’t need it, so you might say I’m cane and able. My main constraint at the moment is that I can’t drive, but should be able to resume in January. So I feel perfectly fine, which makes it hard to believe I have a cancer at all. Had I not seen images of the tumor, or the scars in my cranium, or recalled my inability to walk in a straight line, I’d think it was all some sort of practical joke.
For the most part I don’t know how to feel, but it mostly feels surreal. The complications from my decline will be a lot for us to manage, and that itself is unwelcome. I also have to think through a lot of issues I don’t really want to think through, transition a lot of my duties to my wife over time and do my best to ease my passing for myself and those I love. I will do this while holding on to some tiny modicum of hope that maybe I’ll be the one in 1000 that survive this.
For a few days I had trouble sleeping but it’s easier now. Mainly, life feels kind of pointless. At the same time I am well protected financially and can get the services I need to decline well. That’s more than most Americans can say. Medicare will pick up the bulk of my expenses.
I’m not angry, I don’t feel particularly depressed but I do feel startled by all of this. I would feel resentful but who should I resent? The medical care I am getting is amazing and if anyone can survive this I would think I would be it just based on the top doctors I have working my case. But it’s not realistic and my oncologist did not even suggest it was remotely possible.
To the extent I can live a normal life, I will. An Alaskan cruise is on our bucket list and we should be able to do this. If I remain in decent health I hope we can do a lot more traveling. But I had much more exotic travel plans for European river cruises and even a cruise around Australia. It was all doable if I had ten or 20 more years to live and decent health. Maybe I can check a few of these off before I kick the bucket, but kick the bucket I will, and likely within a few years, not a few decades.
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