The sound of Silence

It seems like so much happens, yet nothing happens.

We’ve finally set a “move” date.
I’ve increased my chemo.
I’ve got a donor.
I’m waiting.

I would have to say one of the most stressful times was getting Boston to communicate what exactly they wanted us to do. I tried to email the transplant nurse regularly, update on things that were happening, she would just say “ok..” but nothing would happen. Then one day… BOOM. They felt like I wasn’t progressing fast enough to remission to be in preparation for the SCT. So, very rapidly, all my dates changes for the transplant, new chemo was ordered- and guess what, they started to talk to my doctor here. What a concept huh? See above objectives…..

I was not crazy about the chemo. Needless to say, it doesn’t make you feel great and I wasn’t sure that I was exactly responding the way I expected to respond (maybe the way that they expected me to respond, but no one communicated that). I had more pain and problems after chemo than any other time and that continued to be true- so I said no more. Dr. Yoda was ok with that and could see why I choose that option. I communicated that to Boston…. and nothing. But innately I knew we had to do something. To get a SCT, you essentially have to be in remission. You cannot have active disease or the procedure just won’t work. I knew that… I thought I was communicating that…. but they just didn”t respond. I”m not sure what the straw was that finally got their attention, but all of a sudden they wanted me in Boston in November- for good…. What?!? that was never part of the conversation…. I told them I couldn’t do that. Try telling your doctor, “no” once in a while, it makes for a difficult one sided conversation. It’s like they had forgotten that I am alive (really happy about that BTW), I had a family, that I was a priority, but there were so many logistics in the way (they are 1000 miles away), children, jobs, just SO MUCH STUFF to manage- their comfort and my comfort were not always a priority. Really it is a big huge balance. And it also did not help that their transplant coordinator is now on leave. G.R.E.A.T.

Sooooooo. I wait. I pack. I get ready for Christmas. I cook. I clean. I get sick. I get better. I lose sleep. I zonk out. I try just to live. And it is working. It is hard to believe that we’ve come this far, but not quite far enough. In about 10 days we leave for an adventure like none other. But it is an adventure I think that we as a family are ready to tackle. I’m remorseful that it takes “silence” to bring change, I am intrigued to be a full time Boston patient and see how that changes my perspective. I am happy that I am taking this time to be with my family- We’ve been up to lots of good stuff! And I am having the time of my life.We had our elves and Santa come a bit early because we thought we would be in Boston for Christmas (fortunately we will be home for the holidays!)