I realized at the end of Wednesday that we missed an appointment. Back in October I had taken my staff on a field trip to the newly opened Broad Museum to survey our agency’s bus stop logistics (for those scratching their heads, I work in public transit) and to do a little team building with our newest staff member. It was a fantastic experience. So immersive and open with something for every understanding and plenty more that exposed you to new and uncomfortable ways of thinking. It was everything a gallery sojourn should be. I came home to Steve rejuvenated and told him everything. He had already said he wanted to go but now he was eager. And he wanted to go with me.
Tickets to get in to the Broad are free, but very limited. They time entries to reduce crowding and improve the flow between exhibits. I appreciate this care for the visitor experience, but it meant that tickets were hard to obtain, even weeks ahead. I took a look at the schedule in early November and found an opening on December 16th at 2PM. I made the reservation, put in for a vacation day, and resolved to make the entire day a grand date on the town. We’d have breakfast at Grand Central Market and sip hot coffee while the city woke, maybe walk around Little Tokyo, have lunch at Clifton’s (he hadn’t been yet), and then head over to the museum for our timed entry. Then we’d wander home exhausted but happy and nap until a late dinner. He was excited about it and I patted myself on the back for love well managed.
I didn’t remember these plans until around 6pm Wednesday night. Breakfast was a donut brought by a friend. If you look down the hallway of the oncology unit at UCLA, you’d think you were in a gallery. Lunch was our now usual car picnic on the way back from UCLA. And the nap did happen. Exhausted? Check. Happy? To be together, sure. But deep longing and sadness are always attached. Nothing we do escapes cancer’s touch.
My sister and I were texting back and forth about our family’s holiday plans. I was pretty blunt. Steve would be in the middle of double punch of radiation and chemo at Christmas. There is no holiday for us. We grieve every day. The song and dance of holiday pomp is so dissonant with our circumstances and feelings right now. And honestly it hadn’t occurred to me that it was next week. I’m so day-to-day right now, adjusting our sails with every new change, that I can’t see beyond the next 24-hours.
Except to ask the question, “what if the treatment doesn’t work?” And even if it does, the prognosis is still a punch to the gut. Steve asked me that question last night. I told him that we would have to make another hard decision.
He asked why we were even bothering to try. He knew the size and aggressiveness of the tumor. The oncology team was incredibly candid about outcomes, statistics, and likely scenarios. I don’t know how his brain encodes memories anymore, but a lot of the important things seem to stick. Those oncology frank talks seem to be one of the sticky memories. And if he’s going to die anyway, why bother with putting him through treatment?
How would you answer that? It took my last bit of control to keep it together and tell him, “because we have to try, babe. We have to at least try to kill this tumor. And if it doesn’t work, or if it’s too much, you tell me. You tell me and we’ll stop.” He nodded. I hoped that was one of the encoded memories.
His ability to tell me to stop will in all likelihood be seriously compromised by that point. And it will be up to me, his wife, to honor his wishes as best I can. He asked me, “What does quality of life mean anyway?” His has already been incredibly compromised. His enjoyment of the people and things around him is limited. Our ability to smile and joke around decreases every day. Part of that is depression, I know. We’re working through that. Part of it is the drugs he takes. The anti-seizure meds are like a giant fog in his brain. They may save his life, but they also dampen his ability to think. That amazing mind capable of so much humor (the puns, dear god the puns) is being slowly smothered by both the tumor and the medicine trying to help him. It’s kind of a miracle that he’s still able to crack a joke.
We met with his surgeon, Dr. Bergsneider, yesterday for a post-op follow up. It was the first time I had seen the extent of the hydroencephaly being caused by his tumor. The doctor referred to it as moderate, but in one angle it looked like the blocked spinal fluid had created a giant lake in the middle of his brain, pushing up against the top. He showed us where they had punched a hole in a membrane to facilitate drainage and relieve pressure. And sure enough Steve has regained some language use in the past couple of days. His word replacement is far less disconnected from actual meaning and it’s much easier to get to what he wants to say. Despite this, he’s started going non-verbal, preferring to nod or shake his head in response to questions. But when he does speak, it’s usually a complete thought with some navigable word spelunking.
We removed the sutures on his biopsy scar while we were there – a mere three neatly tied stiches. The incision from his ETV is much larger, a sort of half moon cut line held together by over a dozen staples. Both are healing well without complication, but the ETV scar wasn’t ready to have the staples removed. Dr. Bergsneider felt driving all the way back to UCLA just to get staples removed was a bit much, considering the impact the trip has on Steve. So he handed me a sterilized packet containing the staple remover and said, “you can do it. Just wait until Monday.”
I will, because it’ll save Steve that trip. I know I can. But we can add this to the growing list of things I didn’t imagine would become part of my caregiver skillset. Steve raised an eyebrow at me when I looked at him, packet in hand. I smiled and shrugged. He rolled his eyes.
We’ve gotten really good at saying a lot with body language.
The paperwork continues. I think I’m finally getting a handle on managing our household, although I’m still wrapping my brain around his mother’s finances. Overnight I became the caretaker of two adults, both with vastly different needs, locations, and schedules. It’s been a crash course in estate planning, durable powers of attorney, and how banks can be total assholes.
Please people, get the advanced care directive, durable power of attorney, and living trust done now. We were able to swing all of that through miracle lawyer Steve Gackle (626-432-7480). Hire him for all your estate planning needs. He was recommended by a close friend and managed all our affairs within days, all with care and compassion and not a single raised eyebrow or judgement. We are forever grateful to him. But we were idiots for not doing all of this years before. Learn from our mistake. Pay the fees and get some peace of mind.
Today there are no appointments, although the last time I said that we got a call from UCLA telling us to rush over for a 3PM oncology consult so maybe I’ll just keep my mouth shut. I’m hopeful for a quiet day of rest, maybe some sunshine, and a few moments to remind ourselves what quality of life really means.