I have struggled to find a way to update this blog about the past 100 days. As I sit here thinking of all of the twists and turns in the past few months I am amazed by many things. But how do you convey to those around you, that are your support how grateful you are and amazed that you are still alive and yet can in the same sentence tremble at the current situation and prospects of a life so uncertain.
I guess the way I have come to is this; there are two stories of this tale. I cant help but feel so victorious and blessed to be alive. The past 100 days of transplantyness have given many brutal attempts at beating me. I had no idea what gvh would feel like, and it has proven to be something, while continually shifting is continually a struggle. A pulmonary embolism that had every potential to end everything, but didn’t. Drug induced Diabetes, from all of the medications and daily injections of all sorts of things, has been a new twist. But I will say the most intense has been this steroid withdrawal. Somewhere between excessive swelling and the fact that even walking has become a painful thing is a difficult transition. I have always had a respect for those who have chronic pain but until now did not quite understand what it really meant.
However then I look back a bit further and realize some things. The chemo radiation combo I had just before the transplant is the most aggressive prescribed. When I look at what my body has been through I am amazed and so grateful to still be here. To still have such love from those around me and to have a life that while I generally feel worse than I ever have, continues to be a great life is amazing to me.
So as I look forward to the next years of rehab and introduction of these new cells, there is both power and trepidation. I cant believe how strong the body can be and I pray that with time I will again regain some of the strength I once had. I will say I do tremble as I think of the next stages of further steroid withdrawal and medication changes though. The acute GVH has transitioned to a chronic GVH and will be treated now and maybe forever. And for the next long while I will still be immune-suppressed and vulnerable.
But I guess it comes down to this. While I have never experienced the intensity that I do now, and it is a more difficult and a more painful climb, it still is the same climb. As I look back I have seen many paths like this. 200 days in the hospital, chemo, relapse, operations, its all the same struggle. But I want all those that read this to know of the importance and power that those who stand by in support are. In the beginning I found I could do more alone, and now find it is through the strength of others that I function. From small steps daily to the hours spent dealing with a tormented stomach it’s the knowledge that its not just me fighting that keeps me in it.
Anyway it had been some time since I have updated, thanks for the love, the prayers and the support. Below is a link to the Chad Hickey Foundation. Jared Vawter and other Co Founders are in the process of creating something to not only help me but to come to the aid of other Leukemia Patients in Need. Please check it out and see the progression. And as always Have Heart, C is Still For Chad
