Sitting in a hotel room less than a mile from the Mayo Clinic, having already done my blood work appointment and trying to fill up the time until I see my doctor tomorrow. Then home again.
It’s been a long, hard month. One of the big things I have to discuss with the doctor here is changing my chemotherapy regimen somehow — both I and the Denver oncologist believe it’s too damaging to my immune system. I’ve gotten sick every month at the end of the cycle since I started the Revlimid, culminating with 5 days in the hospital this month when I came down with bacterial pneumonia. Either the dosage needs to change or I need a new drug, I guess.
Feeling really fatalistic lately. On one hand perhaps that’s silly, seeing as how outside of fatigue I still am not sure I’m feeling the effects of the cancer so much as the drugs I’m being treated with. Still, being in the hospital for a week, getting sick every month … it adds up, mentally and emotionally. Having my daughter visit when I was in the hospital was really touch — the look on her face, the fear, until I won her over by showing her how I could make the bed move.
I sat today next to a pretty young girl at the Clinic who was with her father. I watched as she helped him plug in his chair, talked to the nurse — 16, maybe? I wanted to talk to her, to ask her what it was like to have a father wheelchair bound, sick, but even were it appropriate to ask I couldn’t. This is the raw vein open, the thing that I keep coming back to. We talked about it in therapy last week, how I really don’t fear death on a personal level. I have nothing personally left on my bucket list that means enough to bemoan fate about. But not being there for my daughter? The thought instantly shrivels my soul, hurts in a way I can’t express and can’t linger on for more than seconds without dying a little inside.
I was listening to a podcast recently on World War I, and the podcaster (Dan Carlin) was talking about a letter a young British soldier wrote to his wife the night before the Battle of Somme, which the soldier did not survive. Carlin noted that even were it in the end not neccesary, just the penning of such a letter would scar your soul. Having written so many of them in the past year to my daughter, I can assure you it does.
Being hospitalized for pneumonia as a cancer patient really had me thinking hard about death lately, compounded by a recent death of a high school acquaintance that left behind a widow and two young children. A lot about death. In fact I decided that I wanted that soldier’s letter read at my funeral, whenever that may be, as I don’t think I could really put into words any more effectively exactly how this has all felt, what I live with every waking moment of every day. I’ll close with that, I think, and update this again when I have something new to discuss.