Last minute changes "B" happening

Over the holidays it was decided that I would have one round of chemo in-between my stem cell collection and my stem cell transplant to ensure that I go into transplant with as little disease as possible. Given that I had such trouble with my hearing from DHAP (and still do) I'm not allowed to have that chemo again because I could go deaf, so the doctors decided on a 6 day round of mini-BEAM.

The day before treatment was to start I got a call from the hospital letting me know that there was a temporary Canadian recall on the “B” Carmustine and that the doctors had decided I was to go ahead with the other components E,A,M and it should be just fine – I'm sorry what?

They just spent months convincing me that these drugs were necessary to reduce the residual disease from a side-effects versus gains perspective and now when they run out of the drug they try and pass it off to me as a “you didn’t really need it anyways, your treatment should be just fine” perspective. Well I don’t want to have a treatment that is just fine; I want to have a treatment that is the very best for me. You don’t get second chances with transplants, if this doesn’t work my understanding it’s maintenance chemo until death. (Granted death is a long ways away, but I’d prefer cure thanks!)

This really brings up a question I am constantly pitching to my doctors at my hospital, “am I really getting the care that I need, or am I just getting the care that is available?” It’s a huge difference.

In the end the change was just so last minute, and the reality was that there was just no “B” in the supply closet, so I went ahead with E,A,M. But I'm not entirely satisfied with there answers. The truth is I don’t trust that this decision was made with the best interests of me in mind; I think it was made based upon the reality of the recall. They don’t got it, they don’t got it – but should they have got it?

But what are they going to say? “Um ya Tamara there has been a temporary recall on one of your drugs that leaves you totally fucked, but there’s nothing we can do about it.” No way, total hospital liability! They are not going to pitch any complication to a patient in anything other than a positive light because otherwise people would be up in arms and they would be liable for not providing the very best care/ treatment they know of for that patient. So they say you’ll be fine without it.

I hope so because after this chemo it’s straight to transplant taking my chances with whatever amount of disease is left in my body in hopes that it’s not too much. I deserve the very best chance at a cure that we have available here in Canada just like everyone else, not just an okay or a fine chance and I don’t think I'm getting it – but what can I do about it? This is not the way it should “B”.