After breakfast, the intrepid walkers braved morning temperatures already in the mid eighties. Our destination, as is so often the case, was the world's slowest pharmacy. My relentless use of the steroid cream for my rash necessitated a refill. The sun beats brutally on glass, metal, and concrete, a desert of surfaces reflecting its bright heat on those passing through the canyons of Rochester. We paused at several of the oases created and maintained by the city or one of the foundations associated with Mayo Clinic. Patches of grass and trees provide relief from the heat by providing shade, grass, and flowering plants. Fountains spray water into the air, creating small bubbles of cooler humidity.
I found the shade most helpful, as the sunlight sought to defeat my sunscreen by simply melting it off my arms and legs. As I write, the outside temperature is at 95 degrees with a heat index of 101 degrees. Little wonder I am indoors and enjoying some air conditioning at the moment. At Badger Ridge, just outside Rochester, they are reporting a temperature of 109.2 degrees F, with a heat index of 120! US Weather service has issued a Heat Advisory for our area. Ya think? And it's 7:00 PM! As a well-seasoned and conditioned Yooper, I am not prepared for this kind of heat.
Our little walk through the oven did not seem to aggravate my rash at all, so I guess the sunscreen did its job. There have not been any new or unusual symptoms so far this week, so we're hoping for good test numbers on Thursday and a release to head home on Friday. One thing is for certain, I have no difficulty drinking many glasses of ice water on days like this one.
Preparing for more change
Going home is exciting and I can't wait to get back, yet I feel more than a twinge of sadness at leaving our temporary residence at Gift of Life Transplant House. When we first arrived here, and all was new and mixed up with hospital visits, chemotherapy, and daily infusions of various chemicals, the house was only a place to rest and cope with all the massive changes taking place inside my body. I barely noticed the surroundings much of the time, as my body was busy trying to recover from an insult greater than that caused by open-heart surgery. So much was damaged. So much was changed. So much to do. Little wonder I was barely along for the ride.
After the side effects of the chemotherapy passed, and the sudden setback with the GVHD attacks, life settled down to learning to cope with a changed me, and sharing those changes with other residents of the transplant house. New friendships have been born with folks who understand the challenges, because they have experienced them, are experiencing them, or soon will experience them. At 105 days out, new BMT patients ask me a lot of tough questions and I do my best to share my experience, but always with the caveat that each BMT is unique in its own way. The transition from frightened newbie to seasoned veteran was swift and a bit terrifying. Kind of like raising children -- they always ask the one question you feel least qualified to answer.
Gift of Life has become a second home, and to be honest there are many things I will miss. But there truly is no place like home. Writing this journal and receiving your cards, letters, e-mails, and calls has kept home alive in my mind and assuaged my homesickness.
Going home requires a massive re-thinking of how we function. I must continue my protocols and still have to avoid so many things I enjoy. For example, I cannot garden because I am not supposed to interact with soil. House plants are forbidden. Pets are out of the question. No swimming in pools or lakes for at least a year. The list goes on and on -- all designed to protect me from accidental infection or exposure to toxins that a normal person shrugs off every day. For me they can be fatal.
I will still be taking nearly 16 different medications and supplements each day and going for blood tests at least once a week. In a month, we have to come back to Mayo Clinic for the first of many check ups. Life has become complex and confusing, not to mention expensive. So much so, that I have spent hours (usually when I should be sleeping) mulling over whether or not my continued existence is worth it all. I think every patient of long-term, expensive, and disruptive care has chewed on that old bone. God and I have talked about it extensively...well, I do most of the talking and He just keeps on giving me the gift of more days. I figure that, as long as He is willing to provide the days and means, I should be willing to endure and even grow a bit.
Ruins of a life?
There is life in these old ruins. In many places where ancient buildings have collapsed because of ravages of time or devastation of war, folks have taken the bits and pieces, blocks and bricks and built new buildings from them. I guess I fit into that category, at least peripherally. What I am is not what I was, and there is new life in these old ruins.
I wrote a poem today about the endurance of ancient structures and the Gray Majesty of their ruins. I posted it to my poetry blog: Out of My Mind.
Well, long shadows are tracing patterns on my wall and the sun is about done baking us for today. Twilight will soon bring some relief from the heat and the cool night will soon follow. I thank you all for your prayers and good thoughts, the source of hope for us and the true power behind my recovery. We hope to see many of you in person soon (or at least, write these journal entries on a full size keyboard).
God bless and good night,