Yesterday we returned home after yet another hospitalization, Barry’s 12th. This one was for 16 nights. It’s been a terrible year, one thing after another. There’s been cancer relapse, many upper respiratory infections (some requiring hospitalization), a reactivation of Barry’s shingles, spinal surgery and now, since March, edema that wouldn’t quit or respond to any treatment.
“Anasarca, or extreme generalized edema is a medical condition characterised by widespread swelling of the skin due to effusion of fluid into the extracellular space.”
Barry put on 40 lbs. of fluid weight, was having extreme difficulty moving and eating, and finally, what brought us to the hospital was extreme shortness of breath. After many exhaustive tests, all of the really bad things were ruled out — heart, kidney, liver, and of course, cancer. The diagnosis now is Chronic Graft vs. Host Disease (cGVHD), with an unusual presentation. What else is new? Barry has always had unusual presentations, weird symptoms, and also extremely rare conditions and diagnoses. Every new doctor, and we saw many at Stanford during this stay, is amazed after reading Barry’s medical record. But he’s still standing, eight years after the first cancer diagnosis.
Graft vs. Host Disease is a complication that can occur after a stem cell or bone marrow transplant in which the newly transplanted donor cells attack the transplant recipient’s body. So Barry is under attack, but thankfully cGVHD is treatable and it also means he’s got a graft. He’s on steroids now and we will find out soon if other immuno-suppresants might be used. His edema is much better but he is very very weak.
We’re very happy to be home and very grateful to the BMT (Blood and Marrow Transplant) team at Stanford, especially David Miklos and Wes Brown. They’re the ones who came up with the cGVHD diagnosis and who understand Barry so well. He’s obviously got a ton of underlying strength and health (weirdly) to bounce back after all of this, including of course, two transplants. One nurse compared him to a cat.
We don’t want to go back to Stanford Hospital, our home away from home. I am way too familiar with the layout, the senior discount in the cafeteria, the cots, the parking workarounds and the rules and how to flaunt them. Hopefully we will not return until the new hospital has been built (2017) and beyond, but that’s probably a bit of wishful thinking.
Much love to all,