I’ve been made aware of my mortality again this week. My
quality of life within that has also come into play. I did get good news that
the tumor appears to be stable and unlikely to grow. I don’t mean to discount
that at all because it is major progress; however, I was hoping that the
discussion of further treatment would have been less passive.
The tumor is in a bad spot that’s hard to get to. It’s near
a lot of important stuff, too, so we must be that much more careful. Any
surgical option would be very risky and there’d almost certainly be significant
collateral damage. One possible point of entry is behind my ear and I would
most likely lose hearing in it. Another way would be to cut out part of my mandible
(jaw bone) for access, then reattaching it after. That would have considerable
lasting effects as well. And even if some procedure works perfectly, the damage
done may already be permanent and my symptoms would not go away. I’ve always understood
these dangers, but now I’m even more aware as I’m staring at them more closely.
My doctors want to stand pat and monitor things, and I
appreciate why. They’re firmly against taking huge chances. I’m not quite sure
what I’m willing to risk. I’m not an invalid; I can get around and take care of
myself for the most part. But I can rarely do what I want to do, when I want to
do it, how I want to do it, or with whom I want to do it. I never really feel
good. Sometimes I’m OK, but there’s no way to know when that’ll be or how long
it’ll last. More often than not, I’m stuck sitting here wishing I were doing
something else. If Disability ever goes through I’ll have a few more options,
but they’re still contingent upon my health.
I’ve felt continuously worse over time. I put up with more
now than I did 6 months ago and the tumor is the same size. It doesn’t seem
unreasonable to me that, with this given pattern, the trend will continue. But
for how long and how much worse will I feel? When is it worth it to risk needing
tubes to eat and/or breathe? When is it appropriate to risk paralysis? When is
it acceptable to risk death? I came pretty close during my last surgery—do I
tempt fate again?
I am tremendously
sick of being sick. Unfortunately, some of you can relate to this, and I wish
you nothing but the absolute best as you figure out things for yourselves. For
those who can’t, I hope you never come close to feeling anything like it. I’ve
missed out on so much this last quarter of my life. A lot of what made me me
has been taken away. It would seem that most of that is gone forever. I believe
I can relate to a professional athlete whose career was taken from him by some
major injury, but my sport is life
and retirement isn’t an option.
Basically, I have to decide what I’m worth. How bad do I
have it, really? How much worse could it get? What else am I willing to put up
with? Is this the best that I’ll ever feel? Is this really the best I’ll ever
feel again? It’s possible to feel significantly worse than I do now? What is my
life worth? What is an acceptable risk? How do I quantify that? I’m not sure
what the number is, but there has to exist some reasonable, tangible, finite, and
acceptable amount of danger. I have to try to get better, I just have to…but at
what potential cost? And that’s where we are. That’s where I am.
