I’m not gone, just haven’t felt inspired to write in… how long has it been? Sorry if I made anyone wonder.
The last time I wrote I was looking into a clinical trial in New York. Terry and I had a nice vacation to New York (yeah, filled with doctor appointments), saw some friends, and got to imagine what life would be like in the concrete city. Luckily, it worked out that my good docs in St. Louis managed to get me on the same drug at home. I say worked out, because the drug didn’t work. I'd have lost my house and my insurance for nothing.
For the last year or so, I’ve been unsuccessfully treated by several different treatments. It seemed like each one would make me feel better, but then scans would reveal that the damned thing had disappeared in one spot and popped up in another. Very frustrating, but maybe you know that sentiment already.
Hey, there’s a spot of light to this story, folks, dry your eyes! I was permitted to get on SGN-35 (it has a real name now- close to FDA approval!) which knocked down the Hodgkin’s without wrecking my system. It has about an 80% success rate, for you lymphoma sufferers, so watch out for this drug! It works with antibodies, treating the disease under the idea that it’s caused by a virus (ever had Mono anyone? I‘m guessing at what the virus is… don‘t quote me on that). It’s not a permanent solution, and is best combined with radiation, or a stem cell transplant, maybe both. Well, it worked for me. The doctors were able to shrink the Hodgkin’s down and I received a donor transplant for my birthday present this year.
I spent the month of January in the hospital. It was toughest the first week because I felt good, I wasn’t sure how I would stay sane for a month in those walls. There was a bar within view of my window. The nurses told me that the first week temptation had been too much for some past patients and they had been spotted escaping from the hospital, wheeling their IV’s down the road to get a beer- I did NOT partake!
I received two different chemotherapies, the duration of which lasted for a week. The first chemo was easy, the second was pretty excruciating. The actual transplant, though exciting, lasted a whole 20 minutes and felt like nothing at all. Three weeks of watching my blood counts fall and then rise, and then I was free. I woke up on February 1st in my own bed, animals around me, and my faithful Terry, who has been my rock through all the kafuffle.
I’ve been home for a month now. I lost a lot of weight from the transplant process- more the chemos messing with my system than Graft Versus Host disease. I had a perfect “10-out-of-10” donor, so I may not have to experience the wrath of GVH. Other than some dehydration, everything’s going as planned, it seems. My cells have switched from my own, old bone marrow cells to the new donor cells. I still have problems wrapping my brain around that one. Science is so cool.
I’ve had lab tests every week, which will slow down over the next few months. I haven’t had the follow-up scans yet to show if the Hodgkin’s is gone yet. I feel good now; I can’t even make myself feel worried. It’s been a long time since I’ve felt this sort of freedom from illness, and I'm enjoying it. Spring is coming, that’s all I’m concerned with right now.
Hey, don't know what happened, but if anyone else was having problems reading "New York or Bust," it's back up and running. It's about my new treatment plan, my doctor, and my new city! I hope you'll try to read it again
Thanks for your patience, glad I could fix it.