Movin
He’s on the move again.
Today it’s to the physical therapy ward, where he’ll live and work for the next 2-3 weeks. It’s a great room in a brand new building. There’s a couch, a fridge, a recliner and a great view of the trees outside. It’s sort of like the room you get when you’re having a baby - but less fun.
The work of being in the hospital is pretty constant. Before 8 a.m, there are at least two nurses, meds and a doctor’s visit. It’s imperative that he rests. It is the only thing that will help him heal, but there is rarely time for that. At least every 15 minutes there is work to be done - intake exams; neurology; oncology; swallowing practice (yeah - and it takes a while); physical therapy (which mainly consists of moving from a bed to a chair and sitting up); occupational therapy (holding spoons, vision checks, trying to hold a pen); meds; shots; neuro checks; and meals.
There is barely time in the day to do it all, let alone rest. He’s been extra chatty the last two days. He’s totally lucid and conversations make sense, but he’s even more gregarious than usual (if you can imagine that). Noah and I actually have to refuse to speak to him just so he’ll sleep. He desperately needs every possible minute of sleep and it’s hard to come by. He’ll start full therapy in the gym tomorrow, which will wear him out further, so we’re being extra cautious and protective of his time right now. Oncology says that the stronger he is, the more he may be able to tolerate the chemo and radiation he has coming.
At the moment he is legally blind. He can see. Nothing is blurry or black, but only certain parts of his eyes can see, or more accurately only certain parts of his brain can process what he sees. For one of his neuro checks today, he was given a piece of paper and asked to circle all of the stars he saw on the page. He circled 3 very confidently - but there were 18. Time will tell if this is permanent. The upside is that I walk in looking like a sleep-deprived pile of hot garbage most days and he still says I look beautiful.
We’re grateful for the offers to visit, but right now Covid-protocols are still in place, which means that each patient - no matter the circumstance is only allowed two people in the building. This isn’t just to allow patients to rest, but to keep the total number of people in the facility down to a reasonable number. So far it’s worked ok for us. The kids trade off coming with me, but they have to be on a special list and can’t just walk in and out as they please. We each have to sign in at the beginning of each day, and can only sign in a new person the next morning. He would LOVE to see some of you, but logistically it’s hard. Also, that thing I mentioned about his chat chat versus sleep - we really need sleep to win this week.
We will get preliminary biopsy results soon. The final panel will take another two weeks and they can begin to assess what treatment plan will work best.
We knew this would be hard, but this is next level hard. I have loved and cared for people with lung cancer, bone cancer, breast cancer, colon cancer, liver cancer, ureter cancer, sarcoma - but this one - this one is beating us down at the moment. It’s a full time gig, but it’s the only place I want to be - because he is here - he is my heart. I’d follow him anywhere.
Comments
Glenn
Glenn- took care of that. He’s got a stellar playlist.
Ed
We are here/there for you. All our love, all our prayers,
Frank and Sharon