It’s almost time to get a new immune system!

I got purple highlights in my hair to have some fun with it before I lose it to chemo in a few weeks.

At my last visit with Dr. Burt’s nurse Betsy they did some testing and I found out my EDSS (expanded disability status score) which is a measurement of disability.  It’s at 4.5.  This is significant because it shows my level of disability prior to transplant and I’ll be scored again at some point after….6 months maybe?  I’m excited to see how I improve.  Here’s a graphic of what the scale means-EDSS scale

I had another round of steroid infusions which was pretty uncomfortable last week with the side effects of steroids but this week I’m starting to feel much better.  I’ve been going to P/T twice a week and feeling stronger.  The last three days I left the house with my 4-prong cane instead of my walker which seems to be okay for getting to and from P/T with getting in/out of the taxi but when I used the cane to go to dinner last night my friend ended up just grabbing my arm because I was still holding on to the wall of buildings while walking with the cane to a restaurant.  But I’m optimistic.  I do feel less dizzy and nauseous but my balance is still off quite a bit and they use a gait belt with me at P/T.  I’m also taking a couple of courses toward my Master’s degree in Healthcare Administration- Gerontology and US Healthcare Systems so it’s nice to feel better to be able to better focus on school.  I can’t wait to be able to go back to work.

My dog Zoe is with my friend Kim and her daughter for a few months.  I have housekeeping coming on Monday to do a deep cleaning, I’m going to buy flowers for my patio and do some gardening before I’m no longer allowed to touch dirt after chemo….I’m planning to hang out on my patio while I recover.  It’s peaceful out there.  I looked up the type of chemo and it doesn’t say it makes me photosensitive so I’m hoping I’ll be okay outside but I’ll double check.

Michael will be coming on the 8th and I’ll be starting chemo on the 10th!  I’ll update the blog as I go.

This week Dr. Burt was at the Vatican speaking at the conference at regenerative medicine! I feel so fortunate to be in this treatment with the best doctor in the world for HSCT at one of the best hospitals.  Here’s some links for more info:

Richard K. Burt, MD


Thanks to my friends and family for the support!