Early morning Update from City of Hope

Hi Everyone,


Up at 2:30 a.m. and can't sleep, so thought I'd send out a little update. All is going well.  Dr. Stein who is the head of the clinical trial as a pre-transplant procedure says I'm breezing through the protocol.  This early morning (as I write this) is my first side effect -- a large red "sunburn" type rash on the back of my right leg, but it's manageable. 

 

New piece I'm working on; sorry I can't rectify it's position.  It's about 95% further done than you see it here.

Last night I ventured down to the lobby.  They have an "electric" piano there playing beautiful music, and a world-known harpist is coming this evening for a free concert.   He is going to play music from various countries listed, but not remembered as I write this  - South American, European, etc..   I can feel the pulse of LA's creative juices at City of Hope.  It reminds me of the many years I lived here.  For some reason, San Diego just doesn't have the same vibe.  Though I miss parts of LA,  wouldn't want to live here again and deal with the traffic and smog!

I am meeting people who have Leukemia; everyone's story is just a bit different, and very interesting. For example, a man and wife last night, probably around my age, were happy to share with me how he found about his AML.  He was getting a "routine" hip replacement but the surgery didn't "take."  When they went back in they did a test of his marrow and found the Leukemia. (What a lucky guy as a few weeks later the Leukemia would have been too far to treat, most likely, in order for him to get into remission!)  Chemo worked now he's waiting for a transplant.  He has Kaiser, like me, and we both have Dr. Sahebi of Kaiser treating us.  He just learned of his Leukemia and both he and his wife are still "deer in the headlights." 

They had been sitting in the lobby all day waiting for a bed!  Dr. Stein was right to check me in Monday night saying, "You better go in tonight otherwise there may not be a bed for you tomorrow morning."   I am one of the fortunate ones, a nurse told me.  The beds get filled up fast and then your treatment has to wait.

Earlier in the week I met a young 20-something woman in one of the rooms down the hall.  She got her ALL in High School and her whole life turned upside down for the last 5 years.  Friends she thought were her "BFF's" slipped out of her life.  New ones came in.  She found a boyfriend who got Lupus shortly thereafter.  I was reminded how individual our path is in life.

Well, it's getting close to 3:30 a.m. The machine that delivers the Blinatumomab trial drug is chirping, chortling, beeping out little cranky noises (why it does this at night and not so much during the day I'll never know!), so I decided to chortling right along with it and hopefully it will get rid of its "air bubbles" and allow me to sleep soon.  Apparently,  there's nothing I do or not do that can help except call the nurse each time.  Sounds subsiding now and time to catch some "ZZZZZZZ's" if I can.

Love to you all,
Heidi

P.S. Am going to treat myself to a croissant in the morning at their nice Bistro downstairs, have a seat with a decaf and look out on the beautiful Sierra mountains (?) behind Monrovia and Sierra Madre.