Sunday morning I take off for Nashville for the “big” trip. I’ll have a week of evaluations to make absolutely sure I’m eligible for the study and to establish baselines starting Monday, followed by 3 days of IV chemotherapy (fludarabine and cyclophosphamide) to remove some of my own immune cells and make my body ready to accept the CAR-T cells. I go into the hospital the next day (the 28th) and on the 29th I’m given my re-engineered T cells back.
At that point I’m GMO. There’s an irony to that, for those who know my wife and I, that I find funny. About the only funny part to this, really.
After about two weeks of being monitored in-patient, I’m released from the hospital but have to stay in Nashville for another two weeks or so to be monitored regularly for side effects. Assuming everything’s OK at that point I get to come home.
I don’t know how much I want to get into here today (guess we’ll find out). I’m having what I call an “emotional” day today, where everything is making me sad. I’ve had a horrific week or two with my family, truly awful, during which I’ve penned multiple far-too-long emails begging them to have a heart and understand what I’m going through. On top of that the reality that I won’t see my daughter for three weeks at least is kicking in and it’s killing me. I’m feeling the pressure of this clinical trial and that I might fuck it up somehow after all of this effort on so many people’s parts, or that it won’t work and it will end up being the final disappointment in a long chain of them.
When I did my bone marrow transplant back in 2014 I not only had my wife and daughter out in Scottsdale with me but my wife’s step-father as well. I felt taking care of, and I knew if something went wrong or I just needed a hug or something I could just pick up the phone. Now, going through this nightmare, I’ll be alone while in the hospital. I’m stressed about that as well but more just saddened by it. I mean what if something goes really wrong? I won’t even be able to give a last hug or say goodbye to my daughter.
Yeah, and on that note I think we’re all done with this entry before I dig an emotional hole I won’t be able to get out of. I’ll update here as much as possible while in Nashville, but for more frequent updates please keep an eye on my Twitter feed instead.