Well after the tough summer I’ve had with my symptoms from MS, my doctors in Connecticut and Boston want me to try a new form of treatment. I have been on Tecfidera, an oral medication for MS, for about 6-8 months and since my symptoms are getting worse, the doctors believe this isn’t the right medicine for me. That for some reason, it’s not working for me. So here we go again. I have been on so many different treatments during my fun filled span with MS, including injections from once a week to 3 times a week, to infusions and then the oral meds. I liked the oral meds the best because it was the least intrusive form of medication but The Gilenya I took had bad side effects with (my asthma was starting to be uncontrollable and my eyesight was changing too much) and now the Tecfidera doesn’t seem to be working.
So, here we go again. I knew when I went to see both of my MS doctors this summer that the discussion of chemotherapy would be brought up again. They have been talking about this option for a while now and I have always found a way to skirt around it but unfortunately not this time. My luck has run out.
I’m not going to sit here and tell you that I’m not scared to death, because I am. I’m not sure what’s scaring me the most. Is it the side effects or how sick I probably will get from this? Or is it that this may be my last option for treatment to slow down the progression of this disease? Probably all three but the last one seems to be the big one. I can handle a lot of things. My friends and family tell me all the time how strong I am and how well I deal with my MS but I don’t know. This may take me down. The thought of possibly losing my hair doesn’t bother me, by gosh, my hair is so thick, it might be a nice change! Getting sick after the treatment, yeah, not looking forward to that but I can handle it. It will be hard and I’m going to hate looking at my family’s faces as they see me getting sick but I know that will only be a temporary side effect. But the thought that this may be my last chance to slow this down, yeah, that scares me big time.
Now I know what you are thinking, the pharmaceutical companies are coming out with new drugs all the time and are constantly working towards a “cure” and you need to stay positive, Tabetha. I’m sorry but the pharmaceutical companies aren’t giving me a sense of reassurance, I am losing my faith in these companies, it’s a business and it’s all about the all mighty dollar. When I was diagnosed back in 1995, I was told “in 10 years, we will have a cure.” Well, it’s almost 20 years now, and um, hello, where is this cure? What I get instead from my doctors is, “what’s really a cure? If we can minimize the symptoms and slow the progression than that’s a cure, right?” Um. NO, that’s not a cure. A cure is when it all of it goes away, the symptoms, the damage it has caused, all of it. That’s a cure in my eyes. I guess we have different definitions of a cure. So, I guess, I don’t have a choice any more. My time has run out. I am starting this therapy this week and I hope I’m making the correct decision to go this route and unfortunately, I think this is the last route I have. God, I hope I’m making the right decision.