Today, he is patient MCAH33, his status on a large, backlit board will change from pink to green and then to yellow. He has been stripped of all personal belongings and we have said our goodbyes and had a few laughs before the surgical staff commandeers him down a long hallway with their assurances for his health and safety. I am relegated to a waiting space, shared by the families of those who have entered the hospital via ICU. The tension is more than palpable. There is a constant spiking of fear and heightened emotions. Tears and cell phones. Desk staff on either end encourage folks to go have breakfast, furthering the notion that stuffing something in your mouth can actually keep you from making trouble.
The first 30 days we spent here were a repetition of arrival and finding myself on a map. I spent sleepless nights pinpointing my where-a-bouts on a map that scrolled through my brain. I made mental notes of the things part of me would not remember, either for reasons that trauma keeps us from remembering or because I just didn’t have the presence of mind to commit certain parts of the experience as a report that rehashing might be a good idea.
Instagram shots are good for these things. Putting a hazy filter on an ugly thing can soften the blow the next time you study the image. I try to think about what I hear and smell. It is impossible to ignore the cacophony of what goes on around you when matters are so important. For nearly everyone, these are the most important people to us. Possibly, the most important thing that could happen and the very thing that will send you crossing a bridge that sways and threatens to drop you hundreds of feet down, with just the slightest breeze.
337 days later, we have grown comfortable with the buildings, learned the way. Our anxieties have changed, morphed from the trivial saturated with the big picture to the big picture speckled with the familiar little things. Walking through lobby space is somehow ok now. I don’t fear tripping and falling…my things tumbling out everywhere. I know where all the restrooms are, even which ones are more heavily used. A simple cup of coffee is just that these days, when it used to be a list of potential calamities ….change, kiosk, cafeteria hours, decaf?caff?, the obligatory conversation that comes with the transaction (“Thank you , have a nice day”…when really, you want to shake someone and make them understand exactly WHAT is going on upstairs in your life! Have they no idea the gravity of the situation??) Today,it’s just a cup of coffee.
Dear Husband had a French Power Port installed in the right side of his chest. It will occupy the space the previous port resided in. The rather large tube is snaked through vessels in his neck and once he has healed from the surgery, it will serve as access to his blood. In the 337 days since Kim’s stem cell transplant, it was anticipated that he would continue a steady rate of recovery. With the help of immunosuppressant drugs and close monitoring, the plan was to find a happy balance between his body, his being and his donated immune system. His old immune system and lymphoma was wiped away with chemotherapy and the whole of his blood was replaced with a donor’s stem cells. Her stem cells would set up shop in his bone marrow and become a replacement, fully operative and raring to find any intruder. The trick is to coexist, because to the donor cells, Kim’s body -all of his organs and tissues – are intruders. They are seen as foreign. This is what they term “chimerism”.
Kim’s recovery from transplant was wrought with unfortunate side effects, many as a result of steroids. Steroids being what they are, were reduced as much as possible at about 6 months out, which is where you would see Kim’s recovery plateau. This means, a dark cast on his skin, irritated eyes, chronic dry mouth, hypersensitive digestive system, irregular fingernails, and reduced lung function. The 35% reduction in pulmonary function was enough to warrant some problem solving ideas. So, Kim’s oncologist entered him into a program called ECP (extracorporeal photopherisis). They will access his blood via his new port, and at 200ml at a time, will collect all his white cells, expose them to ultraviolet light and return everything to his body via the same port. The research trials show a high rate of positive outcomes for transplant patients who had been diagnosed with Graft vs. Host Disease.
There’s hope. Today, 451 days since those very scary, first days, I am admittedly calm. I can shake hands with surgeons and not feel like a brown leaf that is going to crumble. Eye contact doesn’t make me nauseated. With all the thinking going on and quick action, this, too, will become …..just a cup of coffee.
(You should know that I did spend those dreamy minutes before sleep narrating what was on my mind. Sometimes, I feel like a court recorder or one of those guys who goes out with a cameraman to report car accidents during morning traffic. If that’s what it is….that’s what it is. I’m feeling confident in my ability to do that.)