I'm not even going to apologize for the ridiculous amount of time between blog posts. It just is what it is.
Last appointment with Dr. Damon was around 9 days ago. We stopped the Mycophenolate and replaced it with Gleevec. Gleevec is a sort-of a miracle drug for CML (a different kind of leukemia) -- see this classic Time Magazine Cover Story from 2001. In addition, Gleevec sometimes has decent results for bone marrow transplant survivors who suffer from my kind of GHVD: muscle constriction and joint pain.
So far, I haven't noticed any difference. In fact, I'd say I'm probably as tight and constricted as I've ever been. For example, I used to just reach down to put on my socks -- think about how you put on yours -- but now I have to sit (on a chair or the bed) put the heel of my foot up near my crotch in order to have enough leverage to sockify. My hamstrings are so tight that even the slightest stretches are painful and my arms are so restricted that there's a huge area on my back that I can't reach. Minor annoyance unless I have an itch. If this gets much worse, there may be some critical functions that become challenging -- see you if you can guess. So now, irrespective of pain, I'm doing stretches every day, even if it's just to maintain my current range. Maybe the Gleevec and the warm weather will help. All this said, my energy-level is definitely up. I think I'm going to bike to the ferry tomorrow!
Anyway today, for the first time since well before Orion was born, in an attempt to test myself, I decided to go the driving range (with Brandon and Valon.) Best I could do was take 3/4 swings with short irons, but after I got used to the limitation, I could actually hit pretty good. No way I can possibly hit a driver or a 3-wood. I just don't have the control, power, or strength. In trying to do more than a 3/4 swing, I had pain all over my my upper body: hands, wrists, fingers, arms, shoulders... pretty much everywhere. So I just backed off til it felt OK, and then it actually started to feel pretty good. Maybe that's a good sign.
Now i know what you're thinking... "Wait a minute! Driving range? Shouldn't you be spending time with your family?" Well, turns out that Heather, Floyd, and Orion have been gone since Tuesday! yeP!, they went to her mom's on Tuesday leaving me with some much needed time for west and wewaxation:
|Droppin 'em off at the airport early Tuesday morning|
I'm flying East this coming Thursday night and we're going to hook up in Atlantic City next weekend for the Bader Phish Shows and then a week vacation in Philly:
|Tickets came last week: three for me; two for Heather|
Where's Heather's Friday ticket, you ask? Friday is boys night: me; Scotty; and Dougie Doodles. On Saturday and Sunday we'll all go. Kids under 6 are free! Phish knows their audience -- we all have kids now. :) More on Phish in a bit.
After dropping the fam at the airport, I decided to treat myself to breakfast at Theresa & Johnny's before settling in to a day of work (from home in the garoffice™). Nothing too fancy, just eggs up and bacon with home fries and an English muffin
|T&J's makes a great homestyle breffis|
A few words about food. I've been seriously pigging out recently. My appetite is as good as it's ever been. Even better, I am actually starting to gain weight. My doctor was pleased with this, but I fear we're coming to the end of an era. On Friday, one of my newer tight-ish pair of pants actually felt tight (rather than tight-ish). Could we be approaching the end of the "eat as much as I want, whenever I want" phase of the recovery? Say it ain't so. Maybe it was the knockwurst from the other night at the deli:
|No, I didn't finish this -- brought one ubb'em home|
OK, back to Phish. Several things to talk about here. First of all, how in the world am I going to go to three outdoor Phish shows in the middle of summer, given doctor's order to stay out of the sun? Answer? REI.
Yesterday I went to Berkeley to have brunch with my good friends Rich and Lorien (and their wonderful little boy, Dylan). I've known Rich since we started seeing Phish shows together in 1990. He recently got diagnosed with Lymphoma (what's up with all this cancer, God?) and is kicking its ass -- and blogging about it to boot.
Anyway, after a great time (and meal -- I brought them a big woo fish platter from the Deli and extra begals and whitefish salad from House of Bagels) I went to the Berkeley REI to stock up on lightweight UPF clothes. I dropped a bundle: long-sleeve shirts, a pair of pants (with zip-off-able pant legs) a sweet Tilly hat, and a long-sleeve UPF biking shirt.
|REI Tilly hat|
The only thing I couldn't find were a pair of light-weight sunproof gloves. My hands are extremely sensitive to sun and other random problems (easy bruising, etc.) I sometimes wear my cycling gloves outside, but I think it might be too hot, so I just ordered a pair of these from the REI website. With two-day shipping, I'll have 'em by Wednesday:
Next, since Heather's at her folks in Northern Mass, she decided to take Floyd to the tour opener in Worcester. They must have released last-minute tickets because two days before the show, good seats were available. The kids were still kind-of on West Coast time, so it wasn't a big deal for Floyd to stay up. They played a bunch of songs that he knew, so they both had a great time. Heather's text says it all:
"He was super cute... lots of props. He stayed up for the whole thing, called Ocelot after one note and asked if there was gonna be another set after the encore."
Last Phish thing: if you haven't seen Mike Lazerow's recent video (about living life without fear) you need to. Mike and I are kindred spirits it would seem: we both got a second chance at life; our lives were profoundly changed by Marc Benioff, and we are both die-hard Phish heads.
One more thing on food, and then I need to grab some -- dinner time :)
Heather and I squeezed in one date night before she and the boys left. Our new favorite, the Buckeye Roadhouse in Mill Valley.
|Perfectly cooked ribeye for me; oh yeah!|
There's a lot more to talk about, especially the LLS Light the Night kickoff and all the exciting Salesforce participation, but that will have to wait for another time.
Sometimes you kick,