This Machine Killed Cancer

Today Shayne’s attending came in for morning rounds and told us what they decided yesterday at their conference about Shayne’s case.

Simply put, he’ll be rescanned after the transplant. If there are no more brain lesions, he’ll get low dose brain radiation. If they still are there, he’ll get high dose radiation. They’re going to type him for a donor bone marrow transplant, but they won’t schedule anything just yet.

This seems fairly innocuous if heard plainly, but after hearing countless versions of “don’t panic, we learned this in med school” conversations, it means something entirely different to me. Chances are slim to zero that his brain lesions will be completely gone, so it means definitely going forward with high dose brain radiation. It invalidates any of my concerns about brain radiation, the whole reason we flew across the across the country to get a second opinion with Dr. Rubenstein. It doesn’t include us in any part of the decision making process. It puts us back at the exact same place we were.

Last night I read through the clinical trial from Stanford that is trying to find an alternative option for relapsed lymphoma, which currently has a 70% chance of relapsing again within 5 years. It suggests that getting an allo transplant within 100 days after an auto transplant might be the answer to a long term cure. It made me so angry that the doctor at Stanford didn’t even try to see us. Maybe we would be doing a different course of treatment or at the very least I would feel more sure-footed about the second opinion that we got.

But in the end, it just makes me angry at the cancer. We’ve done all of the right things. We’ve taken the right steps, and there’s still no definite cure. There’s no definite answer from anyone. We just listen to the doctors who make decisions from test results, scans, and medical journals. I think sometimes they forget that that body they’re talking about is my husband. That his puns and his mathiness and his verbose song writing prowess is what makes him Shayne. His cancer is NOT what defines him, but in the process of trying to cut that away, they might misstep and take a piece of what truly is…