Sunday, May 1, 2011

checking in. Back to work tomorrow, SGN35 clinical trial starts Friday

Hey, all. It's been a few days since I posted so I wanted to give you a little update. Things continue to go pretty well as I s-l-o-w-l-y recover my strength and overall mojo. Following Wednesday's brief ride we decided to put the hammer down a bit and ride Jamestown from the Greenbriar:
It was pretty much a cake walk for Caitlyn and a death march for me. But in a good way :) We had fun enjoying the scenery up the canyon. Warm weather, no wind, very little traffic. Caitlyn had never ridden that road before so it was great to share that experience with her. She was really funny on the ride - at one point she said to me: "if the pace is too fast, just let me know." And I said: "Well, if you're talking and you turn around and there's no one listening to you and I'm 30 yards back down the road, the pace is too fast. Because you know that given my personality I am definitely NOT riding back there because I want to - it's because I HAVE to." It was fun to see her just power up the small inclines on the new Dolce. That is, until my hands and feet started tingling from lack of O2 and I had to stare down at my handlebars to keep from falling off the bike. So, good ride, good sense of accomplishment and no lasting damage! And hopefully my body took the stress, healed up and got just a bit stronger.

Friday was pretty much a recovery day. I thought we might get a little mountain bike ride in but the weather turned a bit nasty and I was feeling pretty wrecked after the Jamestown ride so I ended up just hanging around the casa for most of the day.

Yesterday we got Caityln over to the airport for her return to Bozeman and spent the day doing chores. I then started thinking  - wow - on Monday I have to actually GO TO WORK. What's up with that? Much as I like my peeps at Flatirons the idea of actually going into work for 5 straight days in a row is pretty overwhelming. Shouldn't I just get, like, a year long paid vacation for having survived a stem cell transplant? Apparently, society says no. So I'm back to doing the wage slave thing on Monday. I've made it through the last few days without a mid-day nap so I think I have the energy to be back in the office. And it will be nice to see those beer tokens start rolling into the bank account 2x/month.

This morning we got out for a bike ride - I did a 10 mile loop around Louisville and East Boulder and Susan did a bit of a longer route over to Boulder and Marshall. I've decided to limit my work rate to keep my heart rate < 170 so I had to back way down going up the SBR hill. It's kind of a strange feeling - with my O2 carrying capacity low, my heart decides to pump away like crazy even when I don't feel that tired. If my recovery is similar to what I experienced in the fall my heart rate during exercise will gradually come down as my O2 capacity increases and with that increase, I'll get faster and more fit.

The next big milestone on the medical front is Friday morning, when I start a 24 week run in a clinical trial for a new Hodgkin's drug, currently named SGN35. It's a phase III clinical trial, details are here. I'm pretty excited about being in this study - the folks at CBCI were involved in a phase II study with this drug and saw really great results. They'll take about 300 people into this trial, from 29 sites from all over the world. CBCI is the only place in Colorado that's participating in the study - these guys are real rock stars in the lymphoma world. I'll go down there once every 3 weeks and get a 1/2 hour infusion that will be given peripherally (no central line). The side effects are supposed to be very minor and it does a great job of hunting down random malignant cells so hopefully this will be the final coup-de-grace on my slightly messed up immune system. It's a double blind study meaning that I might get a placebo, which kind of sucks. But that's the cost of getting into the program because of course, no one would actively choose to go through the process and get the placebo. So I won't know which I'm getting although I suppose that if I see absolutely no side effects that it's probably a placebo dose.

Having said all these great things about this trial, I'll have to admit that at some level, I'm really quite bummed about the whole thing. I just want to be HEALTHY, NORMAL and NOT GETTING SHIT pumped into me. Another down side is that I need to get some more CAT scans to participate in the study. CAT scans give you a pretty big dose of radiation and I've had 5 in the last year so that's another risk I'm taking on. So at some level the whole thing sucks. But I would really feel like a dumbass if I missed out on this opportunity and I ended up dying from this damn thing and I skipped a treatment that could have saved me because it was kind of inconvenient. So I'm in and I will wear my happy face and make the best of it. But just between you, me and the blog, the whole thing is turning into a major PITA.

Well, that's the update for now. I'm pretty much out of bubble boy mode now so for those of you that live in the Boulder/Denver area, I look forward to catching up in person over the next couple of weeks. Happy May Day!

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