I have asked for help with positive thoughts in the past. I have received so many I feel like I will never be able to repay the energy people have sen my way. I would love to think the positive thoughts, prayers, and emotional energy has helped get me through a tremendously arduous and trying time. When I say I would like to think this I guess what I mean is that I am not and may never be through this ordeal. The kindness of mind which so many have shown me since I was given the diagnosis of Leukemia has for certain bolstered my confidence in my ability to get through this, has buoyed my often sinking feelings, and has given me hope I may someday skip to another chapter of life. Yet, there comes a point in any tumult where it can feel like the fight outcome is more certain than previously thought. I have not reached the point where the ending is clear and this is very troubling for me.
My labs were not what I was hoping to see today. My growing fear that the GVHD has gained some more precious ground was not fully realized but has not withdrawn despite our efforts to get it under control. I have recently increased the immunosuppression medication in hopes of controlling the attack from within. I am back to a dosing similar to what I was on when I left Seattle only 4 months after the transplant. I should have been off this medication three times over already. I can take solace, I guess, in thinking this internal attack is preventing a relapse but I do feel the burden of preventing my forward progress mentally.
I have been quite active in so much of life recently. I have enjoyed my family tremendously and the chance to see so many people who genuinely care about my battle. I have felt and seen the emotion people have carried within themselves as they walk along beside me on this rough path. I feel like I have been pushing myself to partake in all the opportunities to feel alive that I can within the small frame of safety which I am supposed to live. There is though in my mind the growing feeling that I am missing out on where and what my life was supposed to entail. I could be wrong and maybe there is still some big opportunity in front of me which I have not realized. I have spent much of this past year crooning for the past. It is tough not too when where I was and what I had was just what I had thought I wanted to be part of. Now I am starting to think more and more about what I may be missing now and in the near future. I had always been horrified by the idea of missing my sons growing up, not taking my wife to all the places she wants to go, or just withering on the vine like a fruit who can’t shake free. Now I look around and think that even with my enjoying the now maybe it isn’t enough. The future which had been so bright two years ago and which I thought I was striving for in the last year seems to be fading further away.
The realization of the chronicity and length of this battle seems to be dragging me down. I have spent a lot of time in recent days thinking about where I am going with this fight. I have always had a goal to return to the path I walked before and simply gander back in amazement at what I had been through. Now, I am simply wondering if that path has ceased to be even an option. We often talk in medicine of the idea of acceptance and that we can’t fully heal or recover without that understanding of our loss. I am starting to come to grips with the possibility, probably the fact, that acceptance of our loss is forever on going. We can not accept and move on but we had better acknowledge the footing is always slippery and this makes taking in the view much harder.
I am sure I am not the only person to realize this. Heck, as far as cancer goes I am still in the infancy of my battle. But I have grown accustomed to thinking I really would get on with my life at some point. Right now though I am struggling to see that it will ever be what I imagined. I have often thought I was so lucky in life before that this was just a bit of karma catching up with me. I will admit now I am really starting to feel a bit shafted. I am sure I have felt this way before, I can just read back and know I have but it feels different now. I am for the first time admitting that I am getting dragged down and I can’t seem to find the right combo of hope and optimism to lift my spirit.
It is hard for me to say that. I feel I have had a mental fortitude which rivaled any other out there. Now I am not so sure. I guess that is part of my ongoing acceptance. I am not as strong as I can pretend. I will find a way to push on. My support system is ridiculously burly. In some respects tonight’s rambling is a pent up release of not writing and a way to say I still need the goodwill. It is hard to ask for that but I do appreciate it. I can’t imagine this trip without the aid along the way.
Head Up, Heart Strong. I need a cure.