Tuesday, July 13, 2010

Back on the bleo!

Well, the sheriff's back in town (translation, my oncologist is back from his sabbatical) and he's decided that the whole shenanigans of a couple of weeks ago had nothing to do with bleo lung poisoning. And Bleomycin is an important part of the long term cure for Hodgkins so he has decided to put me back on the Bleo. Susan and I were both kind of expecting this. The PA we were using in his absence is a very compassionate, committed care giver but is a bit hysterical in her treatment. We think she kind of panicked over the tachycardia episode and didn't provide a clear picture to the other oncologists about what was going on. Susan and I both had some hard questions for our oncologist about how their medical team is working together. It's troubling that he could leave town, his backup could come in, change the treatment plan after a consult with the rest of the team, he comes back, looks at the same data and then reverses the decision. At the time, we realized this might happen and we knew from the timing of things that I'd only miss one dose of bleo before he was back and the PA was pretty adamant that they wouldn't give me the bleo.

As a result of this, we've blackballed the PA and told the cancer center that we don't want to have her involved in our care plan going forward. I sure hope they give her some pretty strong feedback about this; I really feel like she put a lot of unnecessary angst into the treatment plan and basically pushed us in the wrong direction. And while being very professional, the oncologist also stated that from here on forward, whenever I'm in that building I should see him and no one else. So a pretty strong, backhanded statement that he's not confident that  his team is going to do the right thing by me.

The other thing you realize is that once you get into a treatment like this it's really hard to switch care givers. If you get into a conflict with your care givers, it's not likely that you can go down the block and have someone pick up your case. For lots of medical, legal and insurance issues this kind of change is probably close to impossible. And of course, the treatment protocol says "full doses, on time" maximizes the effectiveness of the treatment. So while you're shopping your case around, the bad tissues inside of you have a chance to regroup.

Another note for future patients reading this. I never thought to ask, and no one ever volunteered the fact that the oncologist would be off my case for a month in the middle of a six month long treatment plan. I strongly suspect that if he had been in the middle of this we probably wouldn't have stopped the bleomycin.

So yesterday I got a full dose of Bleo and it is now happily (?) doing its RNA cell replication destruction dance on whatever bad cells I have left in me. Another nice part of this is I'll get off the prednisone - last dose is 10 mg tomorrow. Susan's been noticing that I've been a bit more snappy than usual so I think she's excited about getting that out of my treatment plan, along with all the other possible side effects - hypertension, muscle weakness, bone density reduction, elevated blood sugar, reduced immune system response, etc.


  1. It seems unfair that you have to not only suffer through all the treatments, but also advocate for consistent protocols! In a better world, you'd be either consumer or patient, but not have to be both at one time.