April 11th – We clarify a lot of things regarding Medicaid with our social worker, and it looks like mom taking a new job would put us over the income limit for Medicaid. Once we did the cost benefit analysis, of course keeping Medicaid and not taking the job is the more sensible option, given the economics of the situation. Now our family gets to experience first hand how broken the U.S. social safety net is in terms of incentivizing the unemployed into going back to work (not that one should take away Medicaid for the poor, but rather that it should be available for all regardless of income). During Wilton’s group basketball session, one of the kids he was partnered with was just coughing incessantly. We make Wilton mask up at home for the next few days.
April 12th – Today was 70 Fahrenheit and completely sunny. Naturally, my dad and I tried riding our bikes to Downtown Hudson today for exercise after coming home from radiology. Turns out, Walmart bikes aren’t great at holding up to long-term use. The bottom bracket on my dad’s bike unscrewed itself mid-ride, and we screwed it back in loosely and rode home praying nothing else would fall apart. We also went shopping for a new laundry machine. Wilton stayed masked at home.
April 14th – 8am appointment with an eye doctor to check dad’s vision. He’s been complaining that his vision seemed smaller, and that was confirmed in a field of view test. The bottom left corner of his peripheral vision in both eyes was gone, indicating a complication from the initial tumor resection having caused damage in that part of his brain instead of any problem with his eyes. He was still cleared to drive by the doctor though, so we’ll let him drive with supervision. We also got a disability placard for our car as well. I also bring Wilton on a biking adventure downtown for some ice cream.
April 15th – We meet our estate planning lawyer in person with two witnesses to sign everything. He’ll come back next week Tuesday with the original documents for us to keep after making copies. Dad noticed some hair coming out near the radiation site while showering. Paternal grandpa’s 79th birthday today (nominal age 80).
April 16th – We buy a fire pit to burn the dead branches and trees scattering our lawn (as despite everything going on, my mom still wants to garden this year and ashes are good fertilizer).
April 17th – Dad noticed our home water was becoming hard, so he took the opportunity to teach me about our home water filtration and softening system. In the afternoon, a close family friend also took us to the graveyard where my piano teacher rests to show us her headstone’s location. Unfortunately, I didn’t get to attend her funeral as she passed in Sep. 2020 after a year and a half of battling stage IV pancreatic cancer, and due to the pandemic, only her family was present at the small funeral service. I’ll go back on a better day with flowers. W.R.T. Wilton, the whole “full time” nanny at home is very mentally taxing. Even a 40 hour work week has its break days. I have none, so I ask my mom to take over for the day tomorrow.
April 18th – It happens every year but it still sucks to be below freezing with snow on the ground in April. Dad’s hair loss is quite noticeable. In the evening, I thought something was burning on the stove, but it was just my dad burning mugwort to “help him sleep” (according to Traditional Chinese Medicine). It smelled a lot like weed. He hasn’t had as much energy this week to go on regular walks anymore.
April 19th – We visited Dr. David Peereboom, at CCF Main Campus today, the doctor we were originally recommended immediately following the resection. (Offhandedly: wow does that hospital have a buttload of money, and wow were there a lot of cars lined up outside of their Taussig Cancer Center building.) Our consultation meeting lasted quite long and we got to discuss a lot about the next steps in his treatment, including standard treatments like maintenance chemotherapy and TT Fields, and also a possible clinical trial starting soon involving an immunotherapy. Because of the appointment, we had to rush to Akron in the morning for his daily radiation and then immediately drove to Cleveland, so I drove around 2 hours in total on the car today. At least I got to try the esteemed $1.50 Costco Hot Dog and drink combo as a fruit of my labor. Our lawyer also came to finalize all of our legal documents (like Wills, Powers of Attorney, house deeds, etc.) this evening.
April 20th – He went all bald today—the hair coming off in the shower was getting annoying I guess. He drove the car to treatment today, and it was also his first time on the highway post-surgery. Better than expected, but he still drives like a 70-year old grandma due to the vision loss.
April 21st – Dad noticed his calf and foot was numb after waking up this morning, got better after moving around. We suspect it’s because he’s barely getting any exercise. Taking care of Wilton is super draining. Just feels like dealing with a teenager with all the “Why’s” I have to answer and the annoyances of him throwing tantrums, thinking I’m mean for not letting him play Minecraft literally all day (he’s becoming addicted).
April 22nd – Leg numbness was worse this morning, so we mentioned it to our radiation doctor, and they recommended getting an ultrasound to check for blood clots. Surprise surprise, they found one in his leg and they gave him a blood thinner prescription (Eliquis, for treating Deep Vein Thrombosis). Not sure if it’s a result of the chemo or the lack of energy to move a lot or both. I didn’t get a lot of sleep today (how did I survive on 7 hours average in high school?). As an example of the kind of organizing I have to do in the house (I couldn’t find a red pen, so I might as well do a much-needed sorting of Wilton’s art supplies because he never does it himself):
April 23rd – I wanted to bring Wilton to see a performance of the Sibelius Violin Concerto with the Cleveland Orchestra this evening. It turns out, 8-year-old children do not have the capacity to sit quietly for 3 minutes, let alone a two-hour concert. I think I’ll wait a few years before bringing him again. (Funny how I can always find the pieces on Dartmouth’s program whenever I’m on an off term…) Otherwise, the concert was an amazing first time back in Cleveland since hearing Yuja Wang back in 2019; and on top of all this, the guest conductor even knocked over the concertmaster’s stand in the middle of an exciting passage in the Shostakovich Symphony!
April 24th – Learned how to fix a rusted garden hose spigot today with dad. This evening, Evgeny Kissin played in Cleveland for the first time in 25 years. I’ve never seen Severance this packed before. Holy crap. +4 encores on top of the programmed pieces and I met one of my piano teacher’s old colleagues (Prof. Sean Schulze at CIM) during intermission who I haven’t seen in five years. By the end, Kissin had to come out another three times to indicate he had no more encores since the audience just wouldn’t stop clapping. What a dude.
[/et_pb_text][/et_pb_column] [/et_pb_row] [/et_pb_section]