The Waiting is the Hardest Part

 

When I tried to think of a title for this post with what’s been going on, I couldn’t think of one that fit better than this.  Not only am I a big Petty fan to begin with, but the title of this song would be fitting to anyone.  As I have mentioned before, I have been told a couple of different times that my surgery might be a go only to be told it is going to be a couple more months.  So when I started dialysis and found out this most recent time that the study was on hold I promised myself not to get my hopes up when there was a glimpse that things are a go.  FAIL. 

 

I reached out to the research team last week as they were supposed to hear something back towards the end of January.  After going back and forth with Kerry (Transplant Research Coordinator) over email for a couple days I learned that my study has not been shut down.  Good news.  The bad news is they are going to have to make changes to the way they do things now.  The process to come up with a new method of doing it, submitting it for approval and getting the approval takes a couple months.  Kerry estimated that it could take 6-9 months.  As excited as I was to hear that it was still a go and an option for me, it was tough to hear we are still looking that far out.  Not going to lie, got a little emotional as I got my hopes up that it would happen before the may flowers sprung to life.  Talking to Lauren she reminded me to find the good in the news I was given. 1) the study wasn’t shut down and is still an option for me.2) the changes they make will only be to improve the quality of recovery that I will have. Thank you Lauren for helping me see the positive.

 

Just days before I reached out to Kerry, my Mom, Lauren and I were talking about how we need to stop putting our lives on hold waiting for them to tell us we are ready.  Things like taking vacations which we haven’t done much of thinking we were going to be getting ready for a transplant.  And yes I put myself in this position, and yes I could chose at any moment to go the traditional route, but I’m not at that point of frustration yet.  The study I am in has way to many positive outcomes to it to just throw it away.  But what if I could get the same outcome by taking a different route??  That is one of the things I am going to have to think about as I was contacted by one of Kerry’s coworkers (Marian) about another study they are trying to get off the ground that has the same final outcome(no anti-rejection drugs) but I wouldn’t have to have chemo or radiation before the transplant.  I guess I should get on that post explaining the study I’m currently enrolled in soon.  The team that Marian works with is supposed to be sending me information on their study soon and I plan to set up a meeting with both teams(if possible) so I can better decide what I want to do.  But for now I will continue to wait, listening to Tom who said it so well when he said the waiting is the hardest part.

 

I’ve decided to add a new section to this blog.  At the end of the post I am going to put how I am feeling.  So here we go.

Battled a cold last week and it affected some of my treatments.  I have tried to get to bed a little earlier though I did lose a little sleep lately worrying about snookie getting arrested.  I mean, she’s delicate ya know, she cant handle those harsh conditions.