How much anxiety is just right? I have wondered this over and over again in the past few months as I try to titrate just the right mindset. On my bedside table I have books and more books. Here's what the current stack is comprised of: The Hero's Journey by Joseph Campbell, The Reenchantment of Everyday Life by Thomas Moore, Magical Journey by Katrina Kenison, God's Hotel by Victoria Sweet, Love Wins by Rob Bell. A set of rosary beads and a set of prayer beads, an episcopal equivalent tucked into a little box labeled special things.
Two Sundays ago at the grocery store MM was moody and decided to sit on a bench and wait for Butter and me to finish shopping. The next morning he awoke with a headache at 3 am and took ibuprofen for the first time in 6 weeks. He had never had a headache in his life until the first set of brain tumors. The headaches retreated dramatically after both rounds of radiation. His breathing is significantly improved. He's started making brain tumor jokes again. I can't tell if the jokes are generalized nervousness or a cover up. The coffee pot has been left on twice and two pots have been burned on the stovetop. Last night he called me regarding evening logistics of kids, homework, a meeting at the high school and a meeting for Scouts. He was surprised by my plan to drive directly to the high school to meet iMac there. Melanoma Man had devised the plan the night before. I try not to read too much into these incidents.
February 7th there was an appointment with Maria/Oncology nurse Practitioner, MRI of brain, CT scans of chest, abdomen and pelvis. The suspense is painful, tedious. I would just like to take a nap for 3 days leading up to these marathon medical appointments. That's reasonable right? A 3 day nap. Instead I arranged lunch with Nancie, member of my personal advisory committee.
On the day of the medical marathon around 3:30 pm, Melanoma Man sent me a text, stating that with it being a Friday lots of people leave early and thus we would have NO CT or MRI report until Monday.
Five minutes later another text, "the scans are good." I couldn't fathom how both of these could be true. I picked up the phone a minute later, finding texting an inefficient mechanism for discussing something so important. On the phone MM said, "The MRI is clean!" "What about the CT scans?" I asked. "Won't know until Monday." I was reminded of Patient #1's post about waiting days for scan results.
At home MM proudly presented me with the official MRI report, like a kid with straight As. Two things caught my eye. The phrase "no priors for comparison" and the presence of brackets. Sloppy Friday afternoon work. There were at least 4 priors for comparison. The brackets were vestiges of a multiple choice drop down menu that had not been completed. Inside the brackets the word "blood." But was that the word the radiologist really meant to select. If the selection were complete the brackets themselves would disappear from the document. I told myself I was being nit picky, anxious, a worrier. Put it down Sarah, stop, let it be.
The following Monday night, home from work, MM's phone rings. It is Maria returning his call from earlier in the day. I hear him say "Maria- two questions: why does it say there are no priors for comparison? And what do the brackets mean?" It makes me smile. There's my boy. There is his analytical mind and my worrying, which I haven't shared with him, is not so foolish after all. Maria promises to take the films to the radiologist who read the first four for comparison to the priors. She sees it too. It's been more than a week and Melanoma Man hasn't reported back to me any further details. Somehow I'm not rushing to ask either. We get what we get and what we've got is good. Eight months since the first set of brain tumors, when we know the average survival time after melanoma hits the brain is 5-7 months. The science of melanoma treatment is changing right in front of us and we are the beneficiaries.
We go to another Blue and Gold dinner with Cubscouts. It is our last. Now we are in BoyScout world since Butter received his Arrow of Light, went on his first Boyscout camp out with his big brother this past weekend. Friday night of the camp out Butter shares his tent with 3 friends. They practiced putting up the tent in our yard a few days before. Still with the practice they require help from iMac, who is more than thrilled to be older, wiser, more skilled. Melanoma Man attended Friday night camp out happenings and drove the hour home to sleep in our bed with me. He has a sore throat Friday night. In our bed, in the dark I ask him if he has the antibiotics the pulmonologist recommended on hand. "Why are you always trying to treat things that haven't happened?" he wants to know. Dr. C/ pulmonologist has advised him to start the antibiotics at the first sign of upper respiratory infection, so it is NOT my plan. It is the pulmonologists plan. " Boy Scout motto," I return, "Be prepared." I wonder to myself "Why you got to always live life right up to the edge?!! Why you got to wait until it's an emergency?!!" I am tired. I sleep. Saturday I walk on the beach at 7, calmest ocean I've seen in a long time, dark blue edge of sky, birds floating on the surface enjoying the rare calm. Me too. Later I treat myself to more sleep, a two hour nap, uninterrupted by boys or cat.