And someone thought this was a good idea.
Anyone over a certain age has had a colonoscopy and undergone the prep that one does the night before to cleanse all the necessary passages. The irony of this is that, despite Rich running at least once an hour to literally drain his body of anything his stomach didn’t keep, he’s gotta start taking laxatives. I believe under the Geneva Convention this falls under the “cruel and unusual punishment” category.
The doctors are hoping to find the cause of this chronic D. The theory that’s being tossed around is that this is an example of Engraftment Syndrome… a lesser cousin of Graft vs Host Disease. GVHD is common in transplants when the organ or stem cells are donated from a family member, friend or stranger… pretty much anyone who is not your identical twin. The cross matching and typing is very in depth but there are always differences that, no matter how slight, can trigger an autoimmune response and the body begins to reject the transplant. As bad as that sounds, the doctor’s delight in the possibility had her practically dancing in the office. The long term prognosis for patients with this following an autologous stem cell transplant that exhibits GVHD or ES are improved over those who don’t. It shows the body is prepared to fight any invaders.
It’s these kinds of things that make you wonder what you should be wishing for. Other than normalcy.
We were instructed by the stem cell doctor to call from the recovery room after the endoscopy and colonoscopy were done so we could all consult on the immediate results.
Great plan… only no immediate results to be found. Everything looks good. Which, for most people is good news. For us, it means waiting for sample cultures and biopsy pathology reports to come back. A week of waiting. We’ve been down this road before.
Our later conversation with our stem cell guru is that we up the amount of opium and add immodium into the mix to stem the tide. Suddenly the amount of laundry is lessened considerably. Of course, so is the amount of coherent conversation!
We give the new cocktail a few days to do its thing. Then we begin to play with foods to see what may exacerbate the situation. Before, EVERYTHING was the culprit. Now we’re finding a certain level of lactose intolerance. Tomatoes have been an issue all along but we’re ready to test out some sauces and fresh veggies to see where the limitations are now.
Our other restrictions are being lifted one by one. Plants are once again part of our interior landscape and it’s good to see growing things around us, particularly as Autumn wanes and Winter approaches. Crowds are less of a fear as blood levels rise. As we are now less than two weeks from the magic number of 100 days post-transplant, another milestone is reached for us. No longer are we in twin beds in the little main floor bedroom – we’re once again in our own bedroom in our own bed upstairs. We luxuriate in the space and rejoice to be able to share a bed once again!
And now, Thanksgiving is just two days away. We have so much to be thankful for this year. The friends and family that have supported us throughout our journey; the doctors and nurses who have given us the best of care, listened to our concerns and held our hands; the research that created this science fiction treatment that has set us on this new path to health. And all those wonderful family celebrations we have had!
We’re thrilled to leave tomorrow night to be with our family in Rochester for the holiday weekend. Our trip will be by Amtrak. We’ve booked a sleeper car to minimize the exposure to potential infections. Will it remind us of our little cabin at North Shore University Hospital…on the seventh floor through the double doors to stem cell transplant unit? The memories of our Amtrak travels served us well during our time in that little room. When we enter THIS little room on our Amtrak train, we’ll be able to see how far we have come. That the end of this line is filled with the arms of our family makes it all worthwhile…for the first time in a long time, Rich will be able to hug and hold his grandchildren. Priceless.
Blessings and the love of friends and family to all of you who have been with us as we’ve traveled this path. We wish you all a joyous holiday. You will be in our thoughts and in our hearts as we celebrate with gratitude this weekend.