Today I had my first surveillance CT scan since suspending my immunotherapy in June. The process was identical to most of my prior 40+ scans: drink the contrast; have an IV placed and my labs drawn (only one blown vein); have the scans of my neck, chest, abdomen and pelvis; visit with the medical staff; then drink lots of Diet Coke to wash the contrast out of my system. According to Lindsey, Dr. Maughan’s PA, the preliminary scan readings showed no tumors or other metastatic activity. Yay! I've become pretty blasé about the whole process. A scan shows what's already happening in my body, and that's nothing to be afraid of. I'll continue these scans for every 12 weeks for (probably) the rest of my life. I fully expect that, at some point, a scan will show that my metastatic tumors have returned. At that point, I'll confer with my medical team and we'll determine the best therapy. Maybe that will work, maybe it won't. But it's nothing to get chuffed about right now. I’m just happy to continue my NED (no evidence of disease) status.
Speaking of NED’s excellent adventure, I've abandoned my plans to build a house. I made that decision in mid-July after two realizations: First, Jennifer's doctors told me that she was continuing to decline, and that there was virtually no chance that she ever would be able to leave assisted living and live with me at home. So the reason for me to design and build a home that could accommodate Jennifer (walker/wheelchair friendly, no accessible stairs, the ability to restrict access to dangerous places like the kitchen, and controls on exterior doors) no longer existed. Second, my efforts to find a contractor who would agree to build my house for less than a million dollars were not going well. I received quotes from four different contractors. I learned that the demand for housing in Utah was so great that the building trades could name their price and get it. Construction labor costs went up more than 25% in 2019, and the increases this year are on track to be even greater. After dozens meetings with those four different builders, I realized in early July that the compromises I was making to keep down the costs had turned the planned house into something I was no longer interested in building.
Serendipitously, a week after these two revelations, the owner of the house next door to Chelsea, Josh, and the grandkids, announced that he was being transferred back East to help build pharmaceutical plants for manufacturing Coronavirus drugs. I proposed that I buy his house, and in 30 seconds we agreed on a price and shook hands on the deal. I closed late last month. It was the easiest house purchase ever, since it was an all-cash deal. The title company came to my house and needed only two signatures. It’s a 40 year old split entry, which along with disco and bell bottoms was all the rage in the 1970s. Upstairs are two bedrooms, one bath, a living room, and dining room/kitchen in about 950 square feet. Downstairs is another 950 SF with two bedrooms, a bathroom, a family room, small kitchenette, laundry room, and storage area. There is a two car garage separated by a covered breezeway. Out back there is a 12x12 deck and a concrete patio. It sits on an acre of land. The house was recently renovated, with a new roof and siding and a new kitchen. It is unpretentious and is sufficient for my needs.
Spencer accepted my invitation to move into the basement. I have a bedroom and office upstairs, and he has a bedroom and office downstairs. In the past two weeks I’ve yanked out an old freestanding wood burning stove and the stone surrounding it and drywalled it up, gaining about 40 SF in the living room; had carpet installed; arranged for replacement windows; had a washer and dryer delivered and installed; and most importantly, added a hot tub. I have missed having a spa and have been using the new one every day. I also got a hot tub for the Slade’s to thank them for letting me park my fifth wheel next to their house for the past two years. I’ve listed the trailer for sale, and once that’s gone I’ll probably sell my diesel dually. I’m thinking of getting a Gladiator, since I miss having a convertible but want something that can pull my boat.
I feel like I’m staggering through 2020. It’s been a crazy year, between the Coronavirus and the quarantine of assisted living facilities cutting me off from Jennifer for months. Yesterday I was talking with my daughters about how much of Jennifer’s recent decline has been due to her frontotemporal dementia, as opposed to the decrease activity and interaction due to the quarantine. I think it’s a combination of the two, but even when I was able to start seeing her again regularly in July, she continued to decline. She now requires substantial assistance with virtually all of her activities of daily living. Her speech has slowed and interactions typically consist of her repeating the last thing that was said. She struggles with movement: her gait is an uncertain slow shuffle, and she cannot meaningfully engage in physical therapy. She needs assistance in getting up from sitting. In the middle of the night she sometimes slowly rolls out of bed onto the floor. The staff at Layton Park has suggested that she meets the criteria for hospice care, which means that she would have an additional level of care and increased frequency of visits by dedicated specialists. Hospice care also gives the staff more latitude in how they can help her. The nurse at Layton Park warned that, if we did not agree to allow Jennifer to enter hospice care, there soon would come a time that they could no longer legally provide the level of care that Jennifer needed, but would instead have to transfer her to a skilled nursing facility. They stressed that they were not trying to transfer her but needed to comply with the state and county regulations regarding long-term care facilities, especially because the government had stepped up its auditing during the Coronavirus. We agreed to have Jennifer evaluated by the hospice care service, and they agreed that Jennifer met their requirements.
One of the requirements of hospice is that the patient is diagnosed with a condition that could lead to death within six months. The hospice nurse and social worker said that Jennifer’s FTD qualified, even though she could live for much longer. They urged us as a family not to focus on that, but to instead see how her entering hospice would provide greater care. It took a little while for us to come around to it, but I think we’ve all acknowledged that this is in Jennifer’s best interest. But it’s another milestone in Jennifer’s decline that no one was eager to see.
Only four more months of this annus horribilis. Perhaps by the end of the year we will be relieved from this plague that has been scouring over our country and driving people to distraction. But enough about national politics. Hopefully life will get back to normal in 2021. I’m just biden time until then.
