Lots of the same over here – dad’s energy has plateaued with small ups and downs each day. I can usually tell how he’s doing from how he behaves in the morning – it’s a relatively up day when dad doesn’t stumble, spill, or trip, or if he’s talkative and engaging. It’s a down day when he sleeps through until 9am, stumbles while getting to the bathroom, or drifts off to sleep throughout the morning. The plateau – regardless of high or low – looks like this: slurred speech, dragged left foot, confusion (“good morning, Hunter” when Hunter is in Boston, or the same question asked on repeat), New York Times left outside the gate until I go fetch it, quiet house, and a lack of dad’s presence despite the physical space he occupies. I spend every morning with him, as well as a large part of each day, but when I was driving him to lunch on Friday afternoon, it felt like I hadn’t really engaged with him in weeks.
Dad’s taken a new approach with communicating how he’s doing. Now he’s using an academic rating scale (A – F) to let us know how he’s doing. A = no noticeable impairment, B = slight impairment, C = requires explicit attention to manage, D = one (or more) incident wherein he fails to manage effectively, F = requiring constant care and attention.
Today was more of a down day. Dad woke up before me, but spent a good hour in the bathroom (he tends to get cozy wherever he lands, and feels no need to change locations most of the time). I woke up to a batch of coffee (irregular, as I’m usually the one to make it each morning), and dad soon confirmed with me about an upcoming appointment with his Oncologist. He forgot what day and what time the appointment was, despite my continued efforts to remind him.
I guess this is what you call chemo brain? A general fogginess and pervasive confusion of what’s what. Anyways, he went back into his (formerly Hunter’s) room for a nap while I went on a run (training for the marathon – let me know if there are any others who’d like to hop on the growing bandwagon! San Francisco Marathon’s Race day is July 27, with marathon, half marathon, and 10K options).
When I came back, dad was eager to join in on my day’s plans, which consisted of a trip to Burlingame for an appointment and lunch with Robbie and I’s soon-to-be-roommate, Gavin. Dad spent the early afternoon in the Burlingame Library, and took a fall while he was there, which automatically ranked his day at a D. He was noticeably shaken and quiet, though he brought the fall to my attention right away – a significant improvement from last week where he fell twice before noting it just before bed.
At lunch with Gavin, dad was as quick and intellectual as ever. Dad and I were shaken, but the lunch itself was soothing and good for all three of us. From there, dad and I picked up a treat from Peet’s: one large whole milk mocha with whip cream (“somewhere between half and half and butter, I think”). We chatted on the ride home, and he headed to sleep shortly after we got back. From what dad says, his experience is one of exhaustion – though not so simply described as being tired – and fogginess. He’s often gazing into space and zoned out. In all my memory, Dad has been present and engaged. I can’t remember a single time where he just drifted out of a conversation. These days, he’s regularly taken out of the present space and into somewhere out of touch.
Mom, dad, and I are here in the living room now passing time. Despite having spent all day with dad, I’m missing him.
We see dad’s oncologist, Dr. Colocci tomorrow to prepare for the second phase of dad’s chemotherapy.
Wishing warmth and support to you all –