Perhaps the most gratifying part of the Walk on a personal level was having the Federico family with me among hundreds of survivors, caregivers and supporters, as we paid tribute to Linda, my friend from Transplant World in Hackensack, who passed away in July. I knew Linda would have been proud of Joe, Marc, Jon, Michael and friend, Andrew, for carrying the torch she so passionately wanted to keep lit.
About a month after the surgery, when I could finally take a breath and a step without pain, I developed what I call the Mystery Rash, along with a head cold. GVHD has always shown up as rashes, so my heart sank as I thought of another 4-6 months of steroids lowering my immune system and setting me up for a host of bad things. Almost everything I've suffered through since the transplant can be traced back to long term use of steroids to fight GVHD. I practically came unhinged when I went to the doctor's office with my fears of backsliding. I tried to stay calm, but my panic was obvious. To my shock, my team didn't think it was GVHD, but they took a skin biopsy to be sure. I was put on a low dose of steroids with a two month taper schedule to knock out the rash, whatever it was, and assured that the dose wasn't high enough to kick off the domino effect of complications. That, in itself, was a major hurdle. The skin biopsy came back negative for GVHD, and listed a variety of possible allergens, "including insect bites, drugs, ingestants and inhalants." None of this made sense, since my medications hadn't changed, nor did anything I had been eating or inhaling, and I don't remember landing in a pile of bugs in the recent past. But, just to cover all bases, my allergist and transplant team treated me in one way or another for all possibilities. Yes, even bug bites. After a month of misery, the Mystery Rash is finally gone and I'll finish the steroid taper at the end of the month.
The head cold lingered and eventually turned into a sinus infection, but this should clear up soon. When it does, I think I might actually be pain free for the first time in over a year. Plus, my energy is coming back, I'm starting to exercise, and I'm slowly pushing through a To Do list that I never thought I'd get to.
My next finish line is on November 17th, when I will be one year post transplant. Clinically, this is a big deal. Medical research measures outcomes in terms of one year survival rates. The treatment options change should something bad happen, and statistically, most people who relapse will relapse in the first year. For me, it means I will soon be off all my transplant related medications and can rebuild myself with an immune system that has finally taken over on its own. I will honor my first birthday, knowing that the finish line will move again and again. (I know better than to "celebrate," after the Negative PET Scan Party in October 2009 was followed two days later with the AML diagnosis.)
I went to see Dr. Forte last week, my long time oncologist and partner for all medical issues. He asked me to prepare a timeline so that we could discuss all that has happened since the transplant. It turned out to be 4 pages long with 17 test results. Looking back at the last year, I was reminded of how rough it has been. On the other hand, I remain in awe that this process actually works, that I'm doing so well compared to so many others who suffer much more serious complications, and that life will soon return to something resembling life before Transplant World.
I am forever changed in countless ways by this last tour of duty in this war. I'm taking it one finish line at a time. By the time 2012 rolls around, I'll be ready for the next race, this time marking the milestones with health, strength, and continuing rebirth.
CANcer + HEALth = CAN HEAL