Jennie's MS Journey

I am back in Chicago to officially get my new immune system which is simultaneously exciting and terrifying at the same time. It was so nice being home for a few days but it’s not awesome that we had to deal with the flu during that time. I’m thankful that I was able to see the kids and mom, but in retrospect may have made it a bit hard for them to have me come home and then quickly leave again. They are being such good sports, I really do have nice kids. Poor Chloe was sequestered to her room for days and never complained once. 

The remaining part of my hair (and some eyelashes) decided to make a run for it yesterday so we had to full on shave it to 1/16th of an inch. My eyes look bloated or something, eyelashes do exist for a reason. Of all the things to worry about with this disease and HCST, looks shouldn’t even be a consideration but they are. I’ve always kind of stayed looking relatively young and in shape (with some effort) and so I have to be honest, having it all fall apart in a few weeks is pretty outright discouraging. As much as we all want to say that we don’t identify ourselves with our looks, the reality is most of us do when it comes down to it. Every time I look in the mirror with a patchy bald head lately I’m reminded oh sh&% I really am sick ;). I think I may just create giant collages of male models on all the bathroom mirrors for the next 6 months or so.

The most important thing is that my body tolerates the next few weeks. I will be assaulted with chemo at many times the last dose and then will receive the transplant. After that, I will wait for everything to engraft so I can start to rebuild. This whole time I will be protected in the hospital where precautions are taken to avoid infection.

I have to just keep reminding myself of the first visit here to Chicago. I was surrounded by countless people in the prime of their lives from all over the country and elsewhere desperately wanting to be chosen for this research. Many were not given the opportunity and left with their hopes absolutely crushed, it was heartbreaking. Some went on or are going to Moscow/Sweden to get it done there.  I was one of the lucky few that just happened to have aggressive enough disease that it was considered urgent, but not so progressed to not meet the qualifications for success.

So, tomorrow I will get my PICC line placed and Thursday I will start at day -6. At day 0 I will get my stem cells back (I’m missing you) and then about 12 days from that point I may be in a position to come home.

Keep those prayers and good thoughts coming!!! Its go time…