I overslept this morning and almost missed my bridge walk. I’m so glad I made it up there. The pink sunrise and yoga that followed allowed me to begin the day feeling grounded. It was necessary for my wellbeing; I noticed myself on edge today. I know it’s because tomorrow is nearly here. I don’t know if Benjamin’s counts will be high enough for his bone marrow aspirate or not. I am still trying to live in the moment, but it’s becoming impossible to ignore the potential tomorrow has.
We got a lot accomplished today, Benji and me. We took my car to get its tires rotated and balanced, just to be on the safe side, for all of these trips over the Skyway. We then spent the next few hours scouting some of Michael’s recent projects for some long overdue photography. It felt good to be working, taking notes and making phone calls. I’ve eliminated nearly every role I used to occupy, most of them in the non-profit realm. I was reminded of this multiple times today. This morning, I wrote a difficult email canceling a project I spearheaded at the kids’ school. This evening, the radio show I co-founded held its biannual membership drive episode. Had Benjamin not been diagnosed with leukemia, both of these tasks would have occupied hours of my time today. I feel so fully engaged in this new role in my life that I do not miss these other, former selves. But working for my husband for a few hours today felt good, and right, and it is always a treat to see his talent in bloom.
On the way home from the last job site, we paid a visit to my sweet bridge walking friend in her artist’s studio. She is a brilliant painter, and Benji wanted to check out her space. He did not know she’d created a piece just for him. She said it was work that came through her, to help protect him. He was totally in awe. It hangs over his bed now. I know there will be hospital stays ahead; we will be sure to bring this piece with us. It is stunning. It is fierce.
Schoolwork was a monumental challenge yet again today. I tried to stay in a place of observation during Benjamin’s repeated attempts to stall the process. Is this a grasp for control? Or is something deeper going on here? I found myself wondering what effects chemotherapy has on cognitive ability and focus. I’ve also caught Benji saying that words are “blurry” a few times. The impact of his medicines on his vision–and a request for follow-up with opthalmology–is one of the items on my discussion list for tomorrow’s oncologist. It’s something I never would have predicted, but if there is a correlation, I’d bet it’s playing a part in his resistance.
I made a nice big dinner tonight, and healing broth is simmering now. Benji can’t eat tomorrow, but he can have water until 10:00am or so. Michael is coming with us to the clinic in the morning, where Benji will get a complete blood count. Its results will tell us if we are staying or coming home. If his absolute neutrophil count (ANC) is still super low, we’ll be dismissed with instructions to do it all again in a few days. If the number is high enough, we’ll go directly to the Special Procedures Unit and await anesthesia. He’ll be put to sleep with propofol, then a small amount of bone marrow will be extracted from his hip. It will then be sent to Johns Hopkins, where a machine will tell us if it sees minimal residual leukemia cells, or if Benjamin is in clinical remission.
As much weight as we all placed on Benji’s Day 29 bone marrow aspirate, this next test is clearly even more critical. Regardless of the outcome, the oncologists will have a plan for him. He will get what he needs, they say. I can’t seem to process the what-if’s of this bone marrow aspirate, or even whether or not it will take place tomorrow. It is what it is, a wise woman said. I can’t control these outcomes. So I just preset the coffee maker, pack the hospital bag, and hope.