Tuesday was absolutely insane. We had two appointments for the radiation oncologist and then the lung cancer specialist. And while we were talking with the lung cancer specialist, he heard that John and I were here from Colorado and were going to fly back, again, for the brain cancer specialist next week. He said, "I think I can find an opening for you with him. Let me go talk to him."
He talked with the brain cancer specialist, and lo and behold, we got the 1pm appointment we couldn't get through the regular channels, and while we decided to have lunch in the cafe in the cancer center, Kathy and John got texts about the new appointment.
This whole trip has been blessed with so many bits of luck. John and I got two of the last four seats on the non-stop that was most convenient for our flight in. This Friday's flight was half the price of all the other flights around this crazy travel holiday. Our room at our hotel was the very last room left at this Homewood Suites that's closest to my parents, the hospital, and my sister's condo, and when we decided to extend our stay, they had another room at the same price that had opened up since.
I blame all the good wishes and prayers that have been sent our way. Positive energy never hurts to have, and people can really be kind in situations where they didn't have to be, like that lung specialist.
I'm going to spare folks the specifics of the medical information. In part because it's Mom's information, and part of why I stopped blogging for a while, as that line is sometimes difficult for me to navigate.
Suffice it to say we heard from everyone about both the prognosis and possible treatments and the timeline. It's short. Shorter still without treatment. And the hardest thing of all was making sure that my father understood everything that was being spewed at professional speeds in his second language. I am so grateful for John, and the fact that he would stop the doctors, explain things to Dad slowly but not simply. Dad is half the reason I'm as smart as I am, once he understands, he really gets it, it's just translating it from a language he's slowly losing takes time.
It surprised us all, including the brain cancer specialist, when Mom angrily said, "You say all these things, but in the end it's all the same." She then spluttered on in her word salad, but given that he'd been the one to propose a much more aggressive line of treatment, I think that stuck with all of us. She went on to just say, "Yeah" to everything that was asked of her, but... everyone keeps talking about how she's not really understanding anything, but I, personally, think she's really understood nearly everything we've said around her. And she articulates that understanding in outbursts, not with reasoned words and phrases, but I think she knows the things we feel. But I also know that confirmation bias is a thing.
All three of us, Kathy, John, and I, told the doctors, very firmly, that we were going to need time to make a decision, and so we've taken the last two days to do so. That night, for the first time in my life, I held my father while he cried, he needed it so much, but he could only do it after Kathy and John had left the room and were working on something else.
And since Mom's gotten home, we've started the flood of people that are going to do physical therapy, occupational therapy, speech therapy, medication management, and all the home care services that were connected to the Vi (the facility my Mom and Dad are in) and are allowed in because they're licensed and bonded. So we've had two and sometimes three meetings a day, including the hospice coordinator today on Thanksgiving.
One of the things that happened when John and I arrived was that we relieved Kathy and Dad from their death march of ALWAYS being at the hospital. Sending them off to dinner and bed the first night, and making sure that they took off when there really wasn't anything that was going to happen or to decide. Mom was tired of all the people by then, and telling people to go herself. A lot of very emphatic, "Bye bye!"s. So they finally went to take care of themselves.
We've tried to take care of ourselves through all this too. But it's really involved going over to my parents' apartment every morning, staying through to lunch, finding something to eat out of there, and then going back for another appointment. Sometimes we'd get to leave at dinner time to find something for ourselves, and then process and take some time to decompress before going to sleep. Sometimes we'd go back to talk things through with Dad, giving him the time he needs to articulate what he's really thinking. In the shower, one night, under the hot water, I took the opportunity to just cry and cry and cry. John checked in on me, and when I said, "I'm okay. I just need this," he gently patted me and left me to it. I am grateful. He got his turn to cry later, too.
Sleep was still hard to get. Luckily, stopping my thinking wasn't that hard, with all four of us thinking so hard about the problem, for some reason, my backbrain was fine without me going at it at night. Processing in text really helped on the one night I couldn't sleep. I'm glad y'all got something from it. And some things are so hard that it's not about calculating all the odds, it's about understanding what I really feel about the situation and what really makes sense to me and everyone around me. The hard part was just with all the time we were spending on all the things we were tackling there just wasn't always time to sleep.
So.
We ordered Thanksgiving dinner from Vi, and three whole bags of food came a little after lunch, as they wanted to be able to send their staff home for the night. Mom's eyes got big and she said, "Wow!! Three bags!"
That was cool. We all had a smaller lunch, met with the hospice folks at four to find that they might not cover her treatment if we pull the trigger on it now. We might keep her on their regular program until after the treatments, and then do hospice so that someone can monitor her and understand where she is from experience with the progression.
Mom looked very content to be waited on. Usually, she had to have everything Just So, but it was so cool to have her be super relaxed about everything, and when asked about her preferences, she's usually say, "It's good. I don't care." or "It doesn't matter." So different from her old self, but she was enjoying every moment of it all and she smiled big when Jet did a Zoom call with us after dinner, and got to talk with them.
So it was a good Thanksgiving.
We were all thankful about being together, about having gone through all of this together, each using their strengths in the situations that needed it the most. I held my mother's hand as she nodded off while John, Dad, and Kathy spoke about things that needed coordinating. I helped John just cancel some appointments, send confirmations to the treatment doctors we were going with, and just clean up what we could. There will be more things to do on Monday, but all of them will be in service to the consensus decision we all made together.
We're leaving tomorrow. We'll be back. Not exactly sure when, but it might be with Jet, for a while at least. His winter break will be later in December, and he wants to visit sooner rather than later. We have an idea of how much time is left. We'll make the most of it.
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