Being Home
I got home after the initial month and felt pretty good. Slept a lot. I eventually wandered back into the basement after a couple days and got back to some hobbies. Unfortunately I developed a fever on the fifth day and was back in the hospital for another month for a much meaner dose of chemo.
Upon the second home visit I was starved and ate like crazy. I was extremely tired and slept a lot more and didn’t really do any hobbies for almost a week. Getting showered and dressed each day took a toll, and I usually needed a nap. Standing in the shower for 10 minutes wore me out so my wife got a stool to sit on in the shower, making it much easier.
There were a lot of visits back to the Perleman Center for outpatient chemo. Lots of napping at home, but eventually had the energy to start working on projects again and began to finish things! There were a lot of packages of goodies I had ordered while in the hospital.
Another outpatient chemo infusion. My hair was coming back with a “chemo curl.” For those who don’t know, the Dragons is the name of all the Drexel University teams. My son is attending Drexel. For those not familiar with Philly (Philadelphia, PA), HUP is located in “university city” where both University of Pennsylvania (an Ivy League school that my attended) and Drexel University (an outstanding engineering and nursing school) are located. About 1/3 of the staff at HUP were from Penn, 1/3 from Drexel, and the other third from various colleges.
My health continued to decline as a fungal infection in my lungs got worse and worse, at one point I was on oxygen. My initial plan of having the bone marrow transplant in December 2019 was delayed.
Penn Home Infusion came out twice a week to draw blood, do overall physicals, and once a week they changed the dressing on the PICC line. This continued until the PICC line was removed in mid December 2020.
After the Bone Marrow Transplant
Lots of things are different after a BMT! My wife and kids did a ton of cleaning almost every day; too many things needed to be washed daily or weekly.
I was extremely tired, taking naps every morning and afternoon. Very little ambition, and spent a lot of time watching TV, but good stuff, not network junk. For some reason I got into Formula-1 and Formula-E racing.
Chemo fog wasn’t a problem at all so I was able to get back to much more technical projects. My chances were still not very good and since there were few options left, I started spending much more time selling off my hobby stuff on eBay, giving away some vintage computer projects, and simply throwing away many smaller projects that would never be finished. I contacted friends in my main hobbies to see if they wanted some of my collection and also be willing to help my wife sell off everything once I was gone.
I also got my wife’s name on all my private accounts. Sui and I kept everything separate just because it was easier to have one person manage certain bills, so expenses were split up and only one of our names were on many accounts. To make it easier for her, we added her name to all of my stuff. I also asked the kids to decide which of the three cars in my name that they each wanted, the other would go to my wife so she could sell it off.
The doctors did not want me driving so either my wife or my oldest brother Don would drive me to appointments. Getting in and out of a car was a chore, walking from the parking lot to the doctors offices was even worse.