THE UPDATE

I feel like me. I’m not looking up through a dark cloud. I can think about the future. I’m ready to start working these legs back.

AND I HAD MY FIRST DOSE OF KEYTRUDA TODAY.  In-and-out 30 minute IV. No real side effects. Not chemo. But not a “miracle drug”, not with data on my specific condition, but by all my team considered a best chance in a situation for extending my remission without many alternatives.

So, other than dealing with a few non-permanent side-effects of the powerful anti-fungals I’m on, I am free to start rebuilding and enjoying whatever months or years I can get from the third remission.

THE MUSING

While I was “looking out from the dark”, it was hard to even imagine really feeling good. Then, when, all of a sudden, things really turn around, the world turns brighter. The perspective of the seriously ill cannot be trusted. Maybe some can always see the other side (I did during my previous 2 rounds, much harder this time), most are so beat up they can’t quite do that, wavering back and forth at best.

Having my entire family around me and so many incredible friends from throughout my life there with me got me through the darkness. My medical team got me through a mine field – where one delay or wrong move could let the infection win.

Tracey has seemed inexhaustible. She compensated for any moment of weakness, was always there. But this was exhausting her like it was exhausting me, but she never stopped thinking “what else can we do”, “how can we make things happen faster”, and all the while keeping me as happy as someone feeling that way could ever be.

WHATEVER

About that Saturday night when there were 13 people in the hospital room – none of us thought to take a picture of everyone in there or the face of a doctor peeking around the curtain. What we do have is a short video my first-friend from when I was moved from NY to LV in 1972 who has been part of my life ever since. After my initial diagnosis in July 2012, a beautiful Ukulele appeared on my porch. John had sent a note suggesting my recovery time might be a great time to learn the instrument. I always wanted to learn an instrument, and had tried learning piano with the kids, but never had (made) the time. Well I gave the Uke a try. After tuning it, music wasn’t possible. I found a computer program that pretty much told me what to do and got it tuned again. Anyway, I just don’t seem to have the ear and/or level of patience and commitment needed I guess.

So, as John was coming into town I asked him if he could play the Uke for us. John’s a guitar-player and in a band. Uke is about same, right? Not at all. But that didn’t stop him – he stayed up late and learned the basics and selected absolutely the perfect song for the moment.  Afraid the sound will be very quiet, but this is John playing the Uke at the hospital which you can see at http://hannels.org/LimboClip.mp4

Thanks again for all your love and support getting me to this third chance.