August 3, 2018
So, a lot of news this week with Selma Blair (American actress) on the cover of People magazine and a segment on Good Morning America about MS (https://www.goodmorningamerica.com/wellness/story/selma-blair-breakthrough-stem-cell-treatment-ms-64705558) She just had HSCT in Chicago, which is a very similar protocol to what I had done in Seattle. There is a difference in the intensity of chemo, in that Chicago is a little gentler (non-myleoblative). In Seattle, they use myleoblative chemo which wipes out your bone marrow.
I had applied to Chicago and got good feedback , but they wanted active disease at the time of treatment. Basically, get worse and then call us! Seattle had a different philosophy and wanted to treat before there were more active lesions. At the time, Seattle was my only choice and I took it! After all the complications and reading on other people's facebook pages how quickly Chicago patients recovered, I had my doubts: Had I gone too far? Was this treatment too extreme? Would I ever recover?
Well, three weeks out of the hospital from pneumonia and I am bouncing back! I am actually feeling like I am healing instead of spiraling downward. And, with all the news on Selma Blair, I know the treatment is going to be more in- demand. I realize I'm lucky to have gotten it when I did, even if it seemed a bit extreme. Also, the doctor is Chicago is taking a sabbatical so the places in the US that will do this treatment are few.
It's funny, when I'm in the hospital, I often think of what I would write in this blog before I fall asleep. Unfortunately, I never get around to actually writing it. But this time, I remember one night in particular. I didn't feel well at all and, at times of coughing attacks, thought I really might not make it out of the hospital this time. It didn't help that the nurses would confirm my "do not resuscitate" orders every night! I started to think of bucket lists. Did I have one? What else did I need to do? Was I too late?
Earlier that day, the National Geographic channel was on and they were showing National Parks. They were featuring the Grand Tetons, right outside of Yellowstone. I thought, oooh, I'd like to go there again. I had been there on a cross-country trip with my best friend in college and remember it was spectacular. Then, I began to think of all the places I have been and things I have done: swimming with dolphins, backpacking through Europe, sailing up and down the California coast, working summers in Tahoe, flying in a bi-plane with my dad doing loops, going to amazing schools, marrying the love of my life and getting to stay home with my babies for a long time. What a life!
It's not that I don't have things I would still love to do, but I was just in awe of how blessed I have been for 49 years of living. I have such gratitude to my parents and all the people who have made this possible. It was a peaceful way to fall asleep and I'm happy to report. . .I woke up!
Trying to use my brain doing puzzles
First big outing, riding in the golf cart with Paul.
