Saturday, June 29, 2013

Looking forward: What next?

What's new with me?
So I'm now moving about without any trouble except the occasional twinge and a dislike for riding in my car. I think about riding Riley again, and I'm not fearful, exactly, but I'm also not eager to ride outside again. I suspect I just need time in the saddle and a few normal rides before falling back into the routine. I'm not going to rush it, but I suspect I'll be in the saddle at the start of next week. Short stints.

What's new with Bob?

Bob is doing well on chemo, so far no serious side effects (awaiting results from his second series of blood tests), and his skin is improving.  Bob and I are going to a 2-day cutaneous lymphoma seminar in Philly early July. One of the top specialists in the country, Dr. Rook from UPenn, will be speaking.

 CTCL in the media
I read something interesting on a CTCL listserv thread talking about CTCL in TV and literature. It's a rare disease so any mention is noteworthy. Turns out  James Gandolfini has received critical acclaim for his performance  in the 2012 movie Not Fade Away. The movie was set in the sixties and he plays an abusive father who has cutaneous T-cell lymphoma -- at the time, this was a life-ending disease. To prepare for the role, Gandolfini interviewed several people who have CTCL, and one of them posts to a CTCL listserv. When Gandolfini's death made the news, the listserv member posted about his experience working with him. He said that JG was a down-to-earth fellow and nice to spend time with, and he was keenly interested in understanding what it's like to have CTCL. I didn't watch The Sopranos (saw a few episodes, maybe) but hearing this made me very sad for his loss, especially at such a young age.

1 comment:

  1. Glad you're feeling better. Take your time with the riding. I'm sure you'll be just fine once you've been in the saddle a few times.

    Glad to hear about Bob's health. Seems the treatment is working. So glad you found the right doctor's to help you out. It was a long road to get there.


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