Early morning update on “how’s Mark, where’s Mark, how are you holding up?” I didn’t even realize how much time has passed since I posted a substantive update. Maybe that’s your answer right there?! At least to Part 3 of those questions. But let’s focus on the big guy in the center of this storm. Mark continues to improve in so many important ways. While being in the middle of round two of chemo right now, he continues to not experience any majorly feared chemo symptoms. He’s not feeling particularly sick, and while he’s expressed surprise that there’s more hair in the bottom of the drain these days, he’s staying calm about it. He even gained 6 pounds in one day this week, he said! But he thinks it’s the gallons of saline and drugs ending in -cide that might have done it.
In the everyday’s-an-adventure saga swirling around Mark, and unbeknownst to him at this point, his insurance on Tuesday let us know that Wednesday would be his last cover day for his skilled nursing home. Now, as much as I’d like to throw insurance under the bus completely, part of this is that the social worker never did discharge planning with us. And being a newbie to all this, I just la-la-la’d along trusting them when they said he wasn’t leaving any time soon, and didn’t know that I should be furiously planning for Step #182 of this journey. All the way until they said, “hey! It’s tomorrow!” Ugh. Luckily, the mighty force of Mark’s sisters worked with me and yesterday we were granted a four day extension by Aetna. That buys us some time to figure out where Mark goes next.
“But Aetna said he doesn’t need skilled nursing anymore. Why can’t he just come home?” Excellent question. The tiny problem is that across the board, speech therapy to nursing to social workers to case manager, everyone at the nursing home says he will continue to need 24/7 care. That’s 24 hours a day, someone with him. All the days. Plus of course transport to doc appointments, bringing in in-home care for therapies and such. So the choice is go ahead and try to make that work, or find a personal care home for him while he continues to heal and fight his cancer.
“How are you holding up?” I really liked the maybe four days I got in the last week where there was no immediate crisis. The good old days! Yesterday, I taught my classes and also talked to, in no particular order, Aetna three times, the nursing home four times, Mark twice, neurosurgery once, as well as toured two personal care homes, and did a phone interview with someone I could hire to come into the house. I also served the boys dinner and took Matthew to fencing. And worried about how to make this rather impossible decision. I slept pretty poorly last night. I am still putting one foot in front of the other.
The guy in the center of this storm was funny on the phone last night. I asked if he had eaten breakfast. He said “of course, breakfast is the most important meal of the day.” “That’s what I hear,” I said. He replied, “Says Breakfast.”
Ever onward, D.