It has been a very long time since my last blog post, so much has happened.  I think I said once before that my goal was to help others to gain a better understanding and see inside the Bone Marrow Transplant process.  All of it.  The good AND the bad.  I don’t think I ever realized how hard it would be at times to just sit and write.

There is a dynamic in being treated away from home that is ever changing and hard to describe.  I really hope Shaye and I can be helpful in having the Photopheresis program started in Edmonton when all is said and done because i finally understand why we were told that people quit.  QUIT?  I just could not wrap my brain around how anyone could or would even consider quitting.  When the feeling inside you is that your problem has become too much for those around you to handle.  That’s the key.  I am blessed to be surrounded by so many who try to remind me that isn’t the case.

In the summer, during the transplant process, I was surrounded by people and support. Don’t get me wrong, I still have those who are close and have been here every step of the way with prayer, meals, finances, helping take care of kids, dogs, AND me, it’s just different now.  Those who come to stay as my “caregiver” are here for a shorter period of time and I want to maximize the time I have with them to visit during the good times, and during the bad times…well, let’s just say there have been a few that have made it impossible to write.  I shut down.  Trish-out.

So, that is SOME of the emotional side.  Now the physical end of what has been happening.  My rash (Graft vs. Host Disease of the skin) continued to move and get worse after a VERY short period of improvement.  Here is what it looked like when I was admitted in January

The progression for me has always been from the middle out.  It seems to start first on my chest and move out to my fingers and toes.  It just worsened and worsened until my feet looked like this, and I could no longer stand on them without extreme pain, and walking was impossible.  I used a walker or wheelchair.

And now…man, those are great looking feet 😜

Are you still with me?  It was gross.  I was shedding HUGE amounts of skin EVERYWHERE I went.  I wore the same sweats to treatment every day because anything dark would be covered by skin before I left the apartment.  I would get a full dust pan of skin from my bathroom floor every 2 days.  It couldn’t have started turning a corner any later, it was starting to make me a bit crazy.  They were also trying to sort out the meds and prednisone had been at an all time high so my face is super puffy, and every prednisone withdrawal symptom in the book that I had somehow avoided was coming hard, and in addition, my hemoglobin keeps dropping, so on top of muscles deteriorating, I ended up with zero energy.  As all these things are happening, doctors are racing to figure out

1. If the Photopheresis is even working

2.  If any other organs are being affected

3.  What symptoms are Graft vs Host, what is a side effect of medication and what is a result of immunosupression

About 3 weeks ago, it felt like our world was crashing down.  One of the first times, really, in this process that I even seriously  considered I may not make it through this.  The doctors informed me they were going to meet with us to devise a plan.  The thought was that maybe the Photopheresis was not working as they had hoped, and maybe I would have a better quality of life if I went home.  They explained that it wasn’t the end of the road, but that there were a few drugs left they could try.

My issues with this?

1.  I felt there was something leading to the breakdown of the Photopheresis machine too often for us to have a good idea, and the research I had done all indicated it could take 9-12 weeks to see a difference.  I think we were at about week 8 or 9 but with only 1 solid week because of machine issues.

2.  I felt like going home was a death sentence.  I’ve been there before.  I’m not talking about post transplant, but I went through 6 years of trying one medication after another and in and out of hospital before all this.   Just throwing drugs at me and hoping for the best.

So, I asked for 2 more weeks.  2 solid weeks on the machines, and we could reassess.  They agreed.

In the next week when things were going badly with the machine again, I asked the nurse if there could be pressure problems with my line (I have a tube hanging from my chest with 3 lines attached to it that they use to take blood and give blood and meds etc.)  I had already established with one of the nurses that the pressure was different based on how I was lying or holding my breath or standing.   We even had a “collection” routine whereby I could hold myself in such a manner that I could double the flow speed into the tubes, I just couldn’t maintain that for the Photopheresis machine for an hour and a half!  They booked an appointment for the next morning to have my line looked at. It wasn’t sitting properly, they replaced it immediately.  From that day on, there hasn’t been a single problem.  The machines have worked perfectly.

At the same time that we were sorting out the problems with my line, the BMT doctors decided to get started on these “other” medications they were considering.  One was a drug I’ve tried before, but I had to keep in mind that I am fighting a different disease now and the game and rules are different.  Last time, my liver said NO almost immediately.  This time, my body has gladly accepted it and all is good so far.  The second is a medication still in trial and used for a totally different condition, but the BMT doctors had just been to a conference where they had spoken about a few success stories with patients using it off label for Graft vs Host Disease.  I have spoken with patients in the US who have been going throught a red tape nightmare trying to get it because of their own insurance companies etc.  my doctors had it in my hands 1 week after ordering it direct from the manufacturer.  They work fast here.

It is incredible how quickly my body has been responding.  The rash started going away, swelling has gone down, and we are once again back to reducing the prednisone.  It hasn’t been without minor hiccups.  The Photopheresis is helping get the prednisone down and helping with the GVHD, but may be contributing to the hemoglobin drops so I end up needing blood transfusions or I get too shaky and weak to function.  And this week I caught a cold/cough which let to lots of testing and tried to knock me out, but I am getting through with strong antibiotics and my neti pot.

I took this photo today.  Face is still puffy, but I’m definitely going back in the right direction

So I’m still here, there but by the grace of God go I, moving faster in the right direction thanks to an unbelievable medical team, friends, family, and a whole lot of prayer.