hello friends-
i hope you can forgive my latency in this post. Friday will mark just about a month from my hospital release. it has taken me to about now to get things in order and catch my breath if you will.
I wish even as I write that I could convey the awful fear that I wrestled with about transplant. With the odds, the guaranteed factors and the bleak outlook given by the actual guidelines of the treatment I could not really go a day without several tearfilled moments of trepidation. I share this so that I might explain the events of the past 6 weeks and while in so many lights while this could all seem so tragic, or painful, the real beauty is how how I am still here, how I feel and what I have experienced.
I think of these beautiful moments in my life and now have a very powerful grouping of new events that I can add to the list. I remember walking with a sort of resolute peace into the hospitlal to begin this. Accompanied by my brother one of my best friends, and the father of one of my heroes I could not have gone into battle with a better escort. With the prayers and messages from so many the thoughts and love of all of those I know, I could not have been In this predicament with more support and honest caring behind me.
And with all of this support and faith the time i spent in transplant was nothing short of a stream of miracles. i will say that in the thick of it, mucositus, abdominal pain and the general onslaught of transplant reactions were close to as bad as i had thought they would be. the biggest reactions were a complete frying of my adrenal glands and a severe case of mucositus (sloughage of the lining of the gi tract). my sisters stem cells took very quickly and with ferocity. this is a very postive thing but for the time being has left me with an acute case of Graft vs. Host disease in my stomach.
now you can see all of these things and take it either way. for myself i emerged after 6 weeks from an ordeal that i have feared for 3 years would not allow me to function again. that through it i would dimenish in more ways than i could manage. and yet today just 7 weeks out, i am making progress. i can feel the love and the miracle it is that i am not only still here, but feeling for at least a few hours a day like me. the gvh is painful and difficult, the thoughts of the pain in the hospital can be a hard rememberance, but the feeling i get when i can sit with my wife, friends, or just feel the breeze roll through our apt is worth every moment spent to get here.
so the next while- tuesdays and fridays i spend the day at the hospital clinic. i get blood draws to check all the levels in my system. im on about 25 pills a day and some iv magnesium at home and over the next few months the GvH will be the target of treatment. from that point the immunosuppressants will be tapered and we will see just what the immune system will do in my body.(this is the Chronic GVH stage). until then anna and i spend our time enjoying what we can. from art, to building new projects, to visiting with friends, we are blessed to be able to enjoy many things. at some point we will be able to have more contact, but i am still very immunosuppressed so visitors are welcome (just be healthy). and when we can, we will spend more time in fresno.
this time has given me so many glipses at life, i cannot express the gratitude that we both have for the abundance of love, and energy spent in our behalf. to have walked and continuing down this path i had assumed it would be a darker and a more fearful place. it is nothing less than the hand of god that has kept us from this and i am grateful in every step for it. thank you again for your love and support-
have heart-
c is still for chad
Ki and Hugs and a game of scrabble!
Jeff and Chad
Erin and I ( ported and ready to go)
Last Day in the Hospital
6 weeks indoors... First Stop- The Ocean
first week out (last month)
Jeff and Anna about to RIDE
