Friday, October 30, 2015

(sigh) It's back to a stem cell transplant for me


A very happy day! This guy means everything to me. I "get" to fight myeloma, this time with a very kind, amazing husband by my side.

Well I have had a great run with my tandem stem cell transplants in 2012. I relapsed in February 2014 and got on a regiment of Kyprolis-Dex-Revlimid and got back into remission for six months. I got on a clinical trial but was kicked off of it because my total white blood cell counts were too low. And my doctors and I have determined that another SCT is in order, we have put it off long enough. This will reduce my tumor burden significantly, if not put it back into remission entirely. After I have recovered, I can likely get into a clinical trial at NIH that is using exciting Car t cell therapy to keep me in remission potentially forever.

Now that this decisions is made, I am relieved and, dare I say, excited. I'm trying to get permission from my doctor to go skydiving on Sunday to welcome in my new stage of treatment. Something a bit over the top. After I have fully recovered, it is time for a crazy amazing William-Liz trip. Not sure yet but just thinking about it is fun.

When this decision was made and I told William, he said "This is life. I'm all in. I love you and I am so sorry you have to go through this and I am here for you completely," and we both cried. What a huge contrast when I told my ex husband, Bob the Great (Alcoholic): "You are a liar, lazy, thief, drama queen who doesn't want to work and wants my money!" (spit in face) I am so blessed. And, of course, what can I say about my fearlesss, supportive parents? No one fights disease alone, and that is so true in my case. I have an amazing support system and I will be and do just fine.

My medical insurance requires that I be hospitalized during days 1-5, which begins Monday when I get a cocktail of chemo drugs for four consecutive days. I did this all out-patient during my tandem transplants in 2012 but new insurance, new rules. If one must be stuck in a cancer hospital, Huntsman is not a bad option. The views are spectacular. I feel like I'm floating on an airplane. I have blue-ray and room service with delicious food options, I wear my own clothes and, because I remember this part like it was yesterday, I felt pretty good. So I'll be writing, binge watching TV, and intently walking the halls to get exercise. Weather permitting, I'll sit outside. And I'll read. 

SCTs are awful but we make the best of them. What other choice do we have?

I'll say it again... Myeloma is a journey. I'll win, but there are insane numbers of bumps and curves in the road. This one nearly takes my tire off. And life goes on.