I can’t believe how fast time is moving.
Monday I had my “vein check.” They didn’t actually look at my veins….they went over the vascath that will be placed in my neck for collection of my stem-cells. It looks icky but I think that’s more of a mental thing because of where it’s located. They will give me two stitches to hold it in place. My understanding is that it doesn’t hurt and I’ll just feel some pressure when it’s inserted.
I also went to labcorp across the street to have my blood tested to ensure the charcoal drinks washed out my last DMD Aubagio. The first time I drank this cocktail TID my level was still too high by like 0.01 something. So now it should be out of my system.
Yesterday, Tuesday, I had my MRI completed and went to P/T (not related to the study just because I need it because I’ve been declining).
Today I went to meet with Dr. Burt and complete the other tests like the 25-foot walk and the 500 foot walk, peg test, the number test and I forget what else. He said my lesions are enhancing and I need to get on IV steroid infusions again. This is the 3rd time in less than a year. I’m a little concerned about the effect on my bones and more weight gain but it’s better than risking permanent damage to my brain and/or spinal cord. I haven’t received the MRI narrative yet so I’m not sure exactly where the lesions are or how many there are but I was expecting the lesions to be active since I’ve declined quite a bit.
Friday I’m going with my sister to get my hair colored something crazy like purple since it’s going to fall out anyway from the chemo.
Next month Michael and his husband Robert will be coming for a week each to help me get started with chemo and then neupogen shots. I’ll be admitted May 10th for first dose of chemo.
In the meantime I’m volunteering to help Senator Kirk’s office with the REGROW Act. If you are reading this you need to stop right now, and contact your senator and state rep and let them know to support the REGROW Act. You can find more info here. http://www.celltherapynow.org/
My other issue is advocating for insurance coverage equality for HSCT as most do not have insurance covering the procedure. People are forced to sell their homes or raise money in order to have this procedure.
Please, tell everyone you know, in every state, they must contact their legislators. This not only helps MS but any condition that can benefit from regenerative medicine.
Thank you in advance for reaching out to your state reps and senators!