My youngest daughter Lakin has been walking up to me in the past few days and asking me "are you awake daddy?". It is cute because I am usually sitting in a chair or sometimes even walking up to her. But a part of me thinks that she may realize that something has changed in me over the past few days and she wants me to stay with her and not drift away.
My Remicade infusion last Thursday was at a higher dose. We were in the last ditch efforts of trying to give this medication the best benefit of the doubt because the alternatives are either extremely risky or near impossible to get insurance to pay for. The infusion did not go well. It has degraded my neurotransmitters even further, given me pain in my hands, arms and shoulders to what I can only describe as someone shredding my tendons. And the pain is progressing daily into my back and up into my neck. At this rate, I will have a systemic "shredding" by the weekend. Needless to say this has again confined me more to bed and fighting for every ounce of energy to spend time with family and friends. My doctor is stopping future Remicade infusions. He is giving my body a few weeks to hopefully rebound and heal before pursuing the next chapter in my lengthy treatment history. We are now looking at things that have no FDA approval and/or are extremely dangerous. And with all the given risks of new beta treatments, there are no test cases for Behcet's. That's right, I would be numero uno with some of these. This bothers me quite a bit and even begs me to ask the question that there is something more going on here that the doctors cannot even see. I am not sure how I will afford these treatments if insurance doesn't agree to try them. One of the treatments is called Intravenous immunoglobulin (IVIG). While it is not the end of the road, kill my immune system chemotherapy that has been hinted at, it is still a treatment that is risky and incredibly costly. IVIG comes in at an average of $10,000 per treatment every 3-4 weeks. If I start the treatment it would be at the NIH until it is approved by insurance. A plane flight to D.C. every 3-4 weeks is cheaper than paying for the treatment locally by far.
So as I have been mulling this over the past few days, I have been torn in many directions for obvious reasons. I usually don't blog if I don't feel decent. Tonight I have a rare break from the past week of a notch below zero. Remicade was the "golden arrow" that many of us had hoped would pull me into remission. It was also the best tested last chance for improving my situation. So you can understand that I was mulling over how my faith in science keeps failing over and over again and yet I still have hope for some reason. I still believe that there is something, somewhere that will happen. I believe that there is this tiny thorn that will turn on the light and this road to perdition will cease. I have dreams to even start climbing back up the winding road that I have left in my wake. The distance between this faith and reality seems to be the distance from here to heaven but I still carry this hope.
My children remind me not to fall to the wayside no matter how bad things get, no matter how bad I feel. They remind me to keep looking at the world around me and to not lose attention to this wondrous life that I have been given in which I stand slightly off center. I say off center because I know that the world doesn't revolve around me but holds me close to the center. This way I can see the things that I need to see to keep going, to keep fighting for my family and to not lose hope in the things that I cannot see or understand.