I'm back in Portland again. On Monday, I'll receive the modified
CAR T cells. At least it's a very short infusion.
This hotel is very nice. It's got a swimming pool, a small gym, a
bar/restaurant and complimentary breakfast every morning, none of
which I can partake in due to various aspects of my treatment. The
gym and pool are off-limits due to my brand-new PICC line, and a
lowered immune system rules out restaurants, especially buffets, and
doubly especially alcohol. No Fireball for me, sadly. Besides my PICC
and lowered immunity, I can't be left alone; this therapy has a risk
of stroke, seizures and neurotoxicity. Anywhere I go besides the
clinic, Mom has to be with me.
I am so deadly tired. It’s hard to put into words how weary I
feel. It’s fatigue that takes over your brain and leaves your body
free to act like a zombie. I see and I do, but I barely comprehend
anything. It’s a mode of existence where your thoughts tangle
around each other in a web, your brain turning over like a car with a
dead battery while the world outside moves in slow motion. I live
moment to moment, and the moments peel away from me like pages blown
in a soft breeze.
It’s just the nighttime after a long day. Tomorrow morning I’ll
feel fine, and tomorrow night I’ll be cagey, defensive and
depressed again.
My wife is home, waiting for me. That’s the only thing that is
keeping me centered and grounded. There is one person above anybody
else in the world that I live for, and she’s waiting patiently for
me. There’s a light at the end of this tunnel, a dawn after the
longest night in my life. We’ll laugh, we’ll hug, we’ll watch
TV, we’ll go to restaurants and movies and long walks again. I just
have to make it a bit farther.
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