The Beginning of the Next Chapter?
Something big is about to happen and I can feel it running through my body like a surge. It is scary, exciting, exhilarating, and impossible to think about all at once. I am driving home for the weekend after my first round of testing, and will be back on Monday for more. And once it starts it will probably be one of the most mentally and physically intense things I have ever been through. So how am I going to cope?
My family, my team, and I have been researching, calling, emailing and doing everything we can to get me into an HSCT program (stem cell transplant). The reason that this has been so time consuming and hard to get into is that it is an experimental treatment. Being such, it is a possibility that insurance will not agree to cover it. And with a price tag of nearly half a million, there is no way we are paying out of pocket.
I have been approved for the pre-testing, but not yet the treatment. However, they will not approve the treatment until I get the testing. I’m hopeful that the fact that they are letting me get all the prescreening testing for approval done means that if I pass (which I will, as I’m pretty sure I’m healthier than most people they get), means they will also pay for the transplant. Why else would they spend the money on the testing?
Mind you, as I write the blog and refer to “we” working so hard to make this happen, I mean my husband and my father mostly. I have taken the stance that having the disabling disease is doing enough for my part. Plus, I have still been working and taking care of our three kids as much as possible, so I do not have a lot of energy left over. On top of that, the pain sets in long before I’m done with what I push myself to accomplish every day, so my trying to call and make things happen would not be very useful; the kind of pain I get is pretty impossible to think through.
Right now, as I am writing this blog, I am almost sure that this is the start, and I will continue on until I’m cured. I do believe that this is The Cure for MS, and I know that it is the only option I have right now to get better rather than keep getting worse.
It is terrifying because they will bring me near death by completely killing off my immune system before giving me a clean one, and I know it will be very painful for a lot of the time. I am not afraid I will die; I know the chances are far less than dying in a car wreck.
I will get through this because I just know that it is the right thing for me to do. I had never heard of it 7 months ago, and neither had my doctor. I met someone by chance that told me about it. It is not a well-known treatment. I also could not have gotten on with a better team to do it. They have done more stem cell transplants at the Fred Hutchinson Cancer Research Center than any other place in the world. Not for MS patients, it has mostly been for the treatment of cancer, but they know what they are doing.
I also know I have to do it because I feel it is my duty as an able bodied (for an MS patient) and incredibly tough and strong person to pave the way and help in the research to find the cure. After all, one of my kids could have it when they grow up. Beyond that, I have sworn from the beginning of getting diagnosed that I would do anything in my power to stay as able-bodied as possible. I have not put so much effort into running and staying strong for nothing!
I have yet to back down from any challenge I felt worthwhile, and I am not about to start with the most important challenge of my life. I have the support of so many people, and they all want me to be cured of this nasty disease. And my kids need me to be!