Twelve hours after my mother died, in April of 2013, my oncologist told me my remission had failed, and the only thing left was a stem cell transplant. Getting from his diagnosis to the actual transplant was an arduous process. Meetings. Paperwork. Dealings with health insurance companies. Blood work. Pulmonary tests. “Salvage” chemo. Harvesting my stem cells.
Decisions, decisions, decisions. The most important of which was whether or not I would actually go ahead with the transplant. The transplant doctor – a man with an uptight personality so very, very different from the sweetness of my oncologist – was, nevertheless, honest with me when I asked the ultimate question: What are my chances? Not very good. Not good at all.
Hmmmm…What to do.`
Many discussions with family. One email conversation with a priest. In a casual conversation with Bob, he mentioned that the brother of our neighbor across the street had undergone a transplant with similar odds. He chose to proceed for an amazing (to me) reason: to be a lab rat. He knew he would not survive the transplant. He was right. But he did it for the knowledge that would be gained and useful to future patients.
Bingo! Completely captured my heart and imagination. My decision was made.
In mid-August of 2013, I entered the Barbara Ann Karmanos Cancer Center in Detroit. Eight days of “conditioning” with some of the strongest chemo known to humankind, then two days of transplantation. Then all hell broke loose. I have very little memory of those days. I was that out of it. I apparently had conversations with Bob. I don’t know.
Here was the knowledge they had not had before.
Multiple times per day, a neurologist or neurological resident or intern came into my room to question me. What day is this? Do you know where you are? What county? Who’s the President? They always, always ended with “Can you spell ‘world’ backwards?”
Well. No, actually. Not only could I not spell world backwards, but I couldn’t even put together the words to say that I couldn’t.
This went on for days.
Finally, one morning when Bob was visiting me, the entire Neurology department of Wayne State University walked into my room, along with my transplant doctor – Head of the Department of Haematology and Stem Cell and Bone Marrow Transplants. About 15 people in all. Again, with the questions. I. Was. Pissed. When we got to world-spelled-backwards, I could no longer contain my frustration. I said “I’m tempted to say: W O R L D B A C K W A R D S”. I caught the notoriously humorless Karmanos staff off guard. Some needed to leave my room to have a laughing fit. I was deemed on the mend.
But that wasn’t – and isn’t – true.
After about 5 weeks in Karmanos, I was allowed to go home. But four+ years later, I continue to have random “bad world-spelled-backwards days”. Sometimes it will be totally losing the words I need to express a simple thought. Sometimes it is trying to make sense of something I have read. Some days, I know driving my beloved Mustang convertible would be a bad idea. Today, I couldn’t for the life of me remember how to stitch binding to wind up with mitered corners on a quilt.
You cannot imagine how totally discouraging and frustrating that is for me. And I’m not going to go into the TIA (mini stroke) I had last summer, which further exacerbated the whole situation.
Most of my family and friends know not to expect too much from me when I tell them I am having a bad world-spelled-backwards day. But no one really knows what it is like.
This is part of my suck-y “new normal”. And I know this sounds like whining. When you can’t spell a five-letter word backwards, maybe you will understand.