Recovering

Andrew has spent the last week recovering from the EPOCH infusion.  He's crashing now, but still seems ok -- he's fatigued and nauseous, but generally hanging in there.  EPOCH contains some of the drugs that we haven't seen since our hyper-CVAD days (back in Westchester and AMC), so he's unfortunately revisiting some side effects that we had forgotten all about -- hello, vincristine!

We have an appointment at MSK on Thursday for a bright and early PET scan followed by a visit with Dr. Z.  Usually we don't get the PET results until several days after, but it seems they're moving things along quickly.  So that's great -- let's go!  I'm assuming Dr. Z will give him another round of EPOCH, unless by some miracle it's in remission and we can move ahead to the transplant.  I hate to say too much these days -- Andrew and I were laughing that everything I write on the blog lately turns out to be wrong! Dr. Z keeps changing his approach, and the plan is never the same from week to week.  I'm not complaining -- I know these are the very best doctors and I love that decisions stay fluid depending on input from tumor board, etc.  One of the things that frustrated us at Albany was the stone-clad protocol. They decide what you have and "this is the protocol" -- they don't waver.  We asked a few times about additional approaches (things we knew about from research), but the answer was always we don't do that, we do this -- end of story.  Things seem very different at MSK -- with a very problematic cancer like Andrew's, we've learned that there really is no protocol.  You have to try things, because they really don't know what will work -- they certainly know what to try, but it makes you realize how far we have yet to go with cancer research.  They really don't know why many cancers  transform and become resistant to drugs -- they're very honest about not knowing, which I appreciate.

So, I was under the impression that Andrew would not get a transplant unless they get the cancer in remission, but it seems like that's not the whole truth -- it's looking like he will get the transplant, but there are much better odds of success if it's in remission.  What you don't want is for any pesky cancer cells to overpower your brand new donor cells. So this is why Andrew's on the endless chemo loop. I think they must feel that he's young and can endure more than your average cancer patient.

I'm sure it seems like there's a lot of guessing going on, and that the doctor could easily clear up all of these misunderstandings. It's hard to describe how all of this has been an evolution -- as they've tried to get a good diagnosis (I'm still not sure if we've ever gotten a definitive diagnosis), and the longer we're in chemo, the question and answer sessions get fewer, because we're all only focusing on one thing at the moment -- just getting the cancer in remission -- so we don't talk too far ahead, we don't micromanage anymore.  As I told a friend the other night, now we say "tell us when to show up" and that's it.  Andrew's feeling good -- hopefully, fall is all about a successful transplant, and we can soon  return to our lives.

xo
L