Day +117

Day +117

So, there is some progress, but my stomach is still not right. We are not sure what is really causing all the pain...it could still be the pseudo graft versus host disease or it could be the side effects of the prednisone which is supposed to be treating the gvhd? Or a side effect from one of the other many prescriptions? I'm just hoping the chemo didn't do anything permanent to my gut. It is really bothersome.

In any event, once I am tapered off of the prednisone, I can stop having the anti-viral infusions every week. The plan is for two more weeks. At that point the doctor says we will consider removing the Hickman line (catheter) from my chest. That will be such a relief! People say they get used to it, but I've honestly never liked it. It has always made me nervous. It's been in since October and I am ready have it out!

As I get more energy, my mind is clearing a bit. Unfortunately, it is also making me realize how much of the last 5 months I don't recall. I look around and have all these amazing fuzzy socks, lotions, shawls, jackets, cards,  etc. . . and I can't remember who to thank or when they appeared?  So, to everyone who sent me things, please know that I love it all and appreciate it so much! 

The doctor said my labs are looking good though and I can start to get out an about a little more. So, naturally, I was excited and asked about going to a big store, like Target or Costco? He said sure as long as I wear a mask and gloves and use a ton of hand sanitizer. Seriously?! I think I'll stick with Amazon Prime for a little longer!

DAY +100

      DAY +100 Milestone of sorts. . .not exactly where I thought I'd be, but I can begin to see baby steps. I can make it up and down the stairs on my own. We finally got confirmation that the virus which was causing so many complications is under control. I still need the anti-viral infusions for quite some time to be safe, but we are going to try and combine the dosage to once a week. My stomach is still acting like it may have pseudo graft versus host disease so the balance of steroids and anti-virals is tricky.

     I have been completely isolated in the hospital, the house, and the car for the last 100+ days.  I have gone to the mail box once! With my new new schedule, the doctor has encouraged me to try and take some more steps so look out for the bald lady on Gold Hills Drive! I have very little strength, but he says as my platelets increase, I should start feeling stronger.

    I have been so exhausted from treatments and one-day recovery periods, I am anxious to see how my body reacts to multiple days of recovery. I think it will be good and I can begin to get out of survival mode and live again!  A little Sunshine would help too!!