Seth and I in Montreal, just weeks before my diagnosis
I was going to share an update with you about where I am now in the treatment process. As I wrote that post, however, it turned into a piece about fear…and I want to write more uplifting blogposts than that. We are all afraid—of something—at some point in our lives. I used to spend every August dreading the Fall because the change in seasons meant another year of school was about to start; I was a really good student, but I hated school. Autumn is now my favorite season and while I am not sure how that reversal took place, I wonder if similar magic will transform this situation, too.
My bone marrow transplant is currently scheduled for September 8th. That same day, a Hickman line will be surgically implanted in my chest. I understand why this must be done (the care team needs as much access to my veins as possible and with three exterior lines a Hickman is ideal). To be honest, I want the Hickman about as much as I wanted the Ommaya Reservoir—which is to say, not at all. I don’t want tubes hanging out of my chest again; the first time I had cancer I had an Ash-split with 2 lines. I hated every moment with that thing. I don’t expect the Hickman to be any better. Maybe I am just being a negative Nelly, and I may come to appreciate the Hickman as I did the Ommaya (the Ommaya did, after all, save me from bi-weekly lumbar punctures). The Hickman will be the vehicle through which my donor’s marrow will arrive. It’s how I will get food should my appetite fail. It will deliver lifesaving chemotherapy.
A few days after my diagnosis
With all that said, the Ommaya and Methotrexate sensitivity caused cerebral edema. Combined with chemotherapy, so much about me has changed over the course of this journey, not by choice, but because whole swathes of my brain are still water logged. My thought-processes (especially when it comes to sequencing tasks) are about as steady as my walking—which, without the use of my leg brace and cane, is tremendously unsteady. Edema is something that may or may not improve with time. I am missing so many memories as a result of the condition and am having difficulty making new ones.
I am finding that my mental capabilities improve with reading. If I can relax, my head works better. If I can get a good night’s sleep, my thoughts are even clearer. But that’s a “big if”, though, because PTSD (the ever-present reminder of my first cancer experience and the infection that landed me in the ICU for 10 days) wakes me up most nights.
In the hospital, with the Ommaya Reservoir (in my head) and a borrowed leg brace.
As I have confessed to both Seth and to my closest friend, I would quit this treatment if I could. I would be dead, though, in just a matter of months—because Acute Lymphoblastic Leukemia is not a cancer you can live with. It is an aggressive SOB.
So, while I am afraid of what lies in store for me in Boston, I will finish this treatment plan.
I want to live.
I want to marry Seth.
I want my own house, a dog and more cats (I think both Wallace and Aldie need a little sister).
I want goats.
I want to be strong enough to walk on my own.
I was terrible at it, but I want to ride horses again.
I have paintings to start and novels to write.
There is a stack of books on my nightstand that I want to read.
There are places I would like to go.
The ironic part about all of this, is that when I was in high school, and then in college, I wanted to go to graduate school in Boston. Before I fell in love with the Gaslight Anthem, Augustana’s “Boston” was my favorite song. Sometimes I think Boston was always in the cards for me, but I didn’t know it would be like this.
Me, today, August 6th, 2017
On the bright side, I will probably have a great view of the city from my hospital room window. I will be listening closely to the accents the of the native Bostonians in my care team, so as to inform the writing project I have recently resurrected (the main character is from one of Boston’s suburbs). And, once I have had the rest of my treatment—full body radiation twice a day as well as an inordinate amount of chemotherapy—and my year of mask and glove-wearing isolation is completed, I can rest in the knowledge that this second cancer journey has come to an end.
Thank you, to all of you, for the encouragement and prayers. I couldn’t do this without your positive energy. Please keep the light and good thoughts coming.