He underwent a stem cell transplant at Mayo Clinic in July of 2012 and says in the article that his energy is returning 6 months after the transplant. He refers to his facial bloating and lack of hair. I found a photo of him on the internet that shows how the disease has affected him.
He said his swollen face is partly due to his meds but also from the disease itself. "There are deposits all over," he said. Boy, do I know that feeling. Based on what I can tell, the photo above was taken 9 months after his transplant....so I'm doing OK with the hair growing.
Here's a photo from the wedding we went to last weekend in Santa Monica. I have more hair than appears in the photo because it's pretty grey and the light in the photo washes it out. When someone comments on how grey my hair is, I steal Al's old line, "I don't care what color it is, as long as it comes in."
It was really interesting to see the similarities between how the disease affected his relationship with his wife and how it affected my relationship with Al. He said, "I discovered just how very much I love my wife [celebrated photographer, Pat York]. She’s been amazing. Like a lioness. She was so proactive. She had all the questions for the doctors, and she knew the answers – she’s queen of the internet. What she did was such a powerful thing. She’s always been so positively behind me. We have a great relationship. I’ve been very, very lucky." All of that is true for Alan except being queen, or in his case king, of the internet. He still gets confused between a search engine and a web browser--"I don't want to use Chrome, I like to use Google." smh
York first knew something was wrong when he had dark circles under his eyes that wouldn't go away. The medical term for that is purpura and I've had my own battles with that. Fortunately, I never had it around my eyes which is common among amyloidosis patients. Mine has been mostly on my arms (and mostly my right arm) and on my chest. Mine show up as purple spots about the size of a pencil eraser. I've had up to 12 spots on my chest and 8 on my arm at any one time. Right now, all of them are fading and I haven't had any new ones show up....touch wood, as Michael York would say.
As each day passes and the physical reminders of my illness fade, I'm more able to leave behind the worry of my disease that has so consumed me at points of my recovery and take the advice offered by my amyloidosis buddy Michael in this Austin Powers video.
"I suggest you don't worry about this sort of thing and just enjoy yourself. That goes for you all, too."
Oh, and here's another photo from the wedding. That's the face of me...and Al...not worrying and just enjoying ourselves.
1 comment:
XOXO. Groovy Baby!
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