Unfortunately, this goes well beyond my GI tract, though it was certainly the first system to be severely impacted. Even with my J feeds and gastric decompression I simply am not getting adequate nutrition. I continue to lose weight, be severely dehydrated, and don't seem to absorb much of the vital nutrients found in my formula. Words like TPN and gastric pacemaker have been thrown around recently. My hair is falling out. My finger tips are deteriorating. My joints are inflamed... And the pain. My gosh I forgot how much pain I used to be in pre-transplant. My body feels like it's been used as a battering ram.
My team would like me to begin immediate Rituxan infusions, though Actemra is also being considered. Honestly, I don't want to do either. I don't want to do any treatment, period. I struggled through so many grueling treatments over the last 7 years. Half the time the side effects from treatment were just as bad, if not worse, than my actual disease. I blindly gave up my autonomy in hopes of prolonging my life. I gave up my job. My schooling. My dreams. My ability to have children. Everything. There were weeks at a time where I felt less than human. Not to mention all the times I nearly died trying to stay alive.I now understand that those years were my chrysalis. They molded and shaped me - but also, much like a caterpillar, completely disintegrated me in the process. I am not interested in another metamorphoses. Especially since I now know what to expect inside that cocoon. I already worked to become a butterfly! I no longer want to be a robot whose sole mission is to survive, to preserve life at any and all cost. I want to be a whole person, not a MRN number read off by a nurse at the infusion center for the thousandths time. I want to skydive! I want to sing opera!
This time around, instead of doing whatever it takes to have more time I simply want my time to BE MORE! This isn't giving up the fight, this is fighting to fully live! I want to use those butterfly wings I worked so hard for to FLY - not be disintegrated into caterpillar soup (again) in hopes of better wings.
Luckily, I have an amazing team. They get it. They don't necessarily like it, but they understand. They even signed off on my skydiving waiver... very, very hesitantly, while explaining what a horrible idea it was. lol (I jump on Aug 28th!) We decided to come to an agreement. I get two months free of treatment, free of surgeries, free of new medications, free of pressure. They want me to take these 60 days to really think about my decision. To truly decide what route I want to take - as this is not a decision to be taken lightly. It was explained to me in detail that I will decline within this time frame, but my concerns and thought process were also validated. If I decide to move forward with treatment, a gastric pacemaker and port would be placed and Rituxan and steroids would be begun in mid September - though they are all really hoping I change my mind and begin much sooner than that. Truth be told, right now I don't know. What I do know is that I need an undisclosed amount of time to clear my head, talk with family members, meet with my therapist, and do some serious prayer work. Life is about so much more than always trying to get to a better place. Sometimes it is just about enjoying the ride - even if it is down a bumpy, unpaved gravel path.
