February 21

This is the report I was working on this morning: Dad is still recovering from the 4.4 mile walk from Tuesday. Consistent with his nature, he overdid it. The last few days have been spent resting and dozing in the sun, while finishing up The Second Machine Age. At the moment, we’re getting ready to head to radiation, and are drinking coffee and reading the NYT. He’s also started listening to NPR on his phone throughout the day, so he’s accompanied by this soundtrack as he moves through the house.

Dad’s mood has been pretty low the last few days, which is something I’ve felt very sensitive to. The last few days, probably since around Monday, have been a little bluer than the previous weeks where dad’s energy disguised for any of our concerns of long term prognosis. He’s still pretty physically active, but a little less sure on his feet: losing his balance, trouble with fine motor control, among others. He’s also neglecting some of the basic self-care tasks like changing clothes and brushing teeth. I’m a bit concerned, as personal hygiene is really important when you’re undergoing treatment. Additionally, his energy is more frenetic, and he’s much less focused in our conversations. 

Danny came to help out yesterday. By the time they got back home at 10am, dad was wiped. He went straight to Hunter’s room for a nap. We made him some lunch and let him be. He was happy to finish up one of his books, but otherwise spent the day outside in the sun. 

Today was a different kind of day compared to the rest of the week. Having rested for three days after his long walk, dad was higher energy and more engaging. My dear friend Arielle is in town for the long weekend. She dodged the Boston winter to come spend a few days in the sunshine with me, and we’ve been spending some good time outdoors. Arielle, dad, and I headed off to radiation this morning (only four more sessions left!) and spoke with his radiologist after his treatment. From the looks of it, the radiology therapists look forward to seeing dad: every time he walks into PAMF for treatment, he’s met with a warm welcome from the team members. He’s usually talking about music, bike accidents, trips, or books with some member of the team. Today, one of the therapists gave dad a CD with all the tracks of the Batman soundtrack. No idea where this came up in conversation, but dad was happy to receive the tracks. 

Under orders, we’ve been lowering the steroid dose, from 2 pills twice a day to a half a pill once a day. He’ll wrap up taking the steroid come Thursday. Dad’s radiologist, Dr. Shifner, explained that euphoria is a common side effect of the steroid dad’s been taking (to reduce brain swelling, specifically). This side effect may explain some of the lower-than-usual moods dad has experienced this past week.

Dad regularly leaves radiation (especially later in the week) exhausted. We usually go home where he’ll rest for most of the rest of the day. Today, we walked to a nearby cafe for some pastries and french onion soup. Dad was engaging and talkative, and more himself than I’ve seen him in a long time. It’s often difficult for me to describe what it is about him that’s usually missing. From my time with him today, I realized that what’s so often missing is a level of clear-headedness and personal investment in the things he talks about. We talked about books and philosophy and travel, and in those moments I felt that he was back. 

Having rested for the previous three days, dad was eager to do some light isometrics at the gym. Arielle and I did some of the exercises with him, and I was reminded of how strong and focused he is in his rehabilitation. He sets up a plan and adheres to it. But even more impressive is that he’s listening to his body (most of the time) so as not to push it when he starts running low. 

Dad rested and read for most of the remainder of the afternoon. David Clark’s in town for the weekend from Aspen, and the six of us (mom, dad, David, Robbie, Arielle, and I) headed out to Thai for dinner. I realized while we were at the restaurant that this is the first time we’ve gone out to eat for dinner since before dad’s diagnosis. For the last few months, dad’s energy has dropped off pretty early in the afternoon and he’s been in bed by 6pm at the latest. His stamina to stay up has increased quite a bit, and this dinner is a wonderful indication of his current abilities. 

I think the way for dad to feel sustained and energized is to keep his energy up while not overdoing it. At times – like his 4.4 mile walk, or his 2.5 mile walk (25 miles according to Charlie) a few weeks ago – he depletes his stores that allow him to really participate in the world. When he pushes it, it takes him a long, long time to get back to feeling good. I’m working hard to find a comfortable balance with supporting him and letting him be in charge of what he does, and with talking him through the trends I’ve noticed with his energy. I’ve found he’s very receptive to observation and conversation, so it’s a matter of bringing it to his attention before he takes the 4.4 mile walk. 

Tomorrow dad’s spending the morning with David, and then we’ll all spend the evening with Andy, Mike, and Kelly. Fingers crosses that Kelly will wash the dogs – they’ve developed a noisome odor that plagues any and all who pet. 

Today was a good day. 

With hope,

Mikaela

 

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