February 23

I’ve been worried about dad’s state of health a lot this weekend. Immediately after his surgery in December, he’d spill from the left side of his mouth with each sip of coffee, water, or juice. As he’s recovered, the spilling has all but stopped. The last few days I’ve noticed that dad’s been far less coordinated, and hasn’t been holding liquids in his mouth. I initially believed his clumsiness was due to the long walk he took on Tuesday afternoon. But the imbalance and lack of coordination has continued through to today. I’m worried that this indicates something about the growth of his tumor. His radiologist mentioned a few times that the effects of radiation and chemo to shrink and contain the tumor would likely continue well after the treatment wraps up on Thursday. I kept this in mind, but found it hard not to fear that perhaps a few days ago we had witnessed the peak in dad’s energy, motor control, and cognition. I know that he will return back to the wheelchair, but have recently worried that this would happen in the immediate future, rather than in a few months or even a few years from now. 

I encouraged dad and mom to take it easy, and to let him rest as much as he’d withstand. I’m worried about stifling his independence, but worry that his mobility will drop off precipitously, before anyone’s prepared to offer the necessary help, and before dad’s willing to receive it. Last night, I felt weighed down by the inevitability of dad’s disease, and also by the realization that dad’s progress (someone who is more or less entirely mobile, though still handicapped in some mental and physical ways) could deteriorate at any moment. 

Mom checked in with the on-call radiologist today to check in about dad’s symptoms. We learned that these could be explained by the recent change in dad’s steroid dosage. Remember the concerns about dad’s swelling after his surgery? The steroid worked to prevent the brain’s swelling, and the recent and steep drop-off from the steroid may have led to some brain swelling. This might explain his lower affect, clumsiness, and difficulty retaining fluids when he drinks. We’re going to up his steroid medication and decrease the dose at a slower rate than before. 

David, Arielle, dad, Robbie, mom, and I all hung out around the kitchen this morning. David headed back to Aspen this morning – it was really good to have him in town for the weekend. In the company of Mike, Andy, and Kelly, we shared a wonderful dinner last night. Arielle, too, headed back to Boston tonight. Though I wouldn’t give up these visits for anything, it’s tough to say goodbye to these loved ones. Mom, dad, Robbie, and I are now holding down the fort. 

I feel I owe this to my Kelly Johnson, after imposing two dog baths onto her in my previous Caring Bridge post. Thank you, thank you for your kind willingness to wash our stinky dogs. They are so soft now, though I know it was tough to get them this way. Kelly, it’s hard for me to communicate just how much I appreciate all that you do here, but gratitude for dog washing is the least of it!

Sitting here with dad in the living room, he chips in a thought: “So I’ve been thinking about this whole brain cancer thing, and when you think about it I really won the lottery.” Just looking up GBM on wikipedia supports this insight: incidence is 2-3 per 100,000. Dad goes on to say, “the doctors made the point to tell me that the cancer had nothing to do with anything I ate, anything I did. So all that stupid stuff I did… that had nothing to do with this.” Considering what I know about dad as well as my observations these last few months, I think dad will continue to find thrill in his suffering. That being said, it may not be to the same degree as his recent adventures in Bali and Australia, as well as the endless stories of dad’s stupid/awesome travails.

With love.

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