January 9

Though far from seamless, we have made it safely through a second day / third night at home. We’re each adjusting into this new context, but a lot of the kinks were sorted through today. 

Possibly the greatest help was Dave Cohan, who dropped off a ramp to help my dad get from house to outside. We had a few appointments at the hospital today, and the idea of lifting my dad up and down the stairs in his wheelchair made my head spin. He’s so strong, but I’m terrified of hurting him in any way. It’s worth noting how swiftly my views of my dad have transformed with his illness: his left arm often hangs limply by his side, and he has lost a significant amount of weight in the last three weeks. Furthermore, the surgery has left him off-center and imbalanced, which makes him more prone to falling. He remains strong, but he is a “fall risk” (at least according to the bright yellow wristband taped around his wrist from Santa Clara Valley Hospital. 

We started off the day running out of coffee. Unideal, but the day improved from there. We spent the morning getting his things together into one consolidated bag. My dad is a nut for bags. We have tubs filled with different niche’d bags that he has picked up from Patagonia (and other stores, but principally Patagonia) over the years. My dad had an urgent request for their new bag, the Ascensionist pack (click here for your visualization) to organize all his gear. I have the strong hunch that he found this as a perfect excuse for purchasing an otherwise unnecessary purchase, but given the circumstances, he can have anything he wants in my opinion. I raced to Patagonia yesterday to overnight this (albiet awesome) pack to our house for tomorrow. 

Anyways, the bag. This is a kennism: he needs everything in one bag. These bags include his “emergency gear”, such as a silver emergency blanket, a shovel, a whistle, toothbrush, raincoat, etc. We are working on getting him as organized and at home as possible, and we discussed how to best actualize this goal over breakfast. 

Dad had an appointment with PT today to go over different logistical and physical obstacles. Josh (PTrainer) went over different medicinal regimens, and helped get my dad prepared for the upcoming transitions. Indicative of my dad’s commitment to his physical recovery: he repeatedly asked Josh what the best sorts of exercises were that he could begin to work on. The two of them, supported by Carol and Robbie, worked on walking down the hallway with the support of a wheelchair and the wall. It was fantastic progress to have him walk without immediate aid, and it’s a huge success for someone in my dad’s state. 

After his PT, my dad met with one of the directors of Home Instead – an organization we’re using to provide at-home support for my dad, as well as to relieve the other primary caregivers. Something that I’m personally wrapping my head around: setting boundaries with this work. I’ve found it very difficult to prioritize my own needs over my dad’s, when he’s so fundamentally dependent on my support. Plus, it’s really nice to share the time with him even when we’re just doing stupid stuff like working our transitions or trying to organize all his junk into his new snazzy pack. But I notice myself losing steam and growing more exhausted. The home health support should relieve some of this fatigue for me, as well as the rest of my dad’s helpers. We’re trying someone out tomorrow morning at 7am, so I’ll have more to say about that in tomorrow’s entry. 

Around 12:45, Robbie, my dad, and I headed over to Palo Alto Medical Foundation for appointments with his neurosurgeon, the social worker, and to get an MRI. Dr. Jackson, my dad’s neurosurgeon remarked on how good my dad looked, and reviewed many of the important things for my dad to consider as he goes through this recovery, as well as with the introduction of radiation and chemo next week. When asked about the ketogenic diet, Jackson remarked that my dad’s small size (even before the chemo) makes that type of diet concerning from his perspective, and that my dad should rather incorporate every and any calorie available to him. I’m going to ask around for more information about all of this, as a second opinion can’t hurt. Has anybody else come into contradictory feedback from providers? I’ll raise this issue to his oncologist when I meet her tomorrow.

When we returned back home, dad was worked from the long day at the hospital. I made him a late lunch, and we all took the time to get the most important things done. Dad slept, I cleaned the kitchen, Robbie took over the daunting task of building an IKEA dresser that I purchased in an effort to make my highschool room more of the space I need while I take care of my dad. 

While this is still all new, I’m noticing that the days have a certain rhythm to them: dad is very, very high energy in the early morning through the early afternoon. By mid afternoon, he’s tired and exhausted from the day. Thus, the mornings are usually more active and fast-paced, while the afternoons offer more time to relax and do what needs to be done. 

 

With thanks and appreciation.

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