Life is a roller coaster

It's been a long time since I posted anything (mid-December) since life has been very chaotic. How chaotic? Well, I haven't taken a single photograph since I got back from Costa Rica. But I'm off on an adventure again, so I need to get up to date.

Jake's cancer came back. He has had lymphoma twice before, in 2010 and in 2018, and he had a stem cell transplant in 2018, in hope that would prevent a recurrence. But, no dice. To make a long story short, the same lymphoma came back in his lymph nodes and in his brain—the "stroke" last April was probably the cancer (so I was wrong when I complained that the doctors were jumping to conclusions). He had a pretty bad autumn, with balance and strength issues. By the time I got back from Costa Rica on December 18, he was very weak. (His brother Jeff stayed with him while I was gone last fall, the only reason that I was still able to travel.) It was a crazy fall, as we didn't know for sure that it was the cancer. He had a negative biopsy in November!

Anyway, our local oncologist referred us to a lymphoma specialist at UVA. We really like the team there, and are in good hands. Jake did two rounds of chemo and is in "near total remission." The chemo was intense! He was inpatient at UVA for 5 days each time, and he was home after that when all the side effects would hit. And they were bad!

But, he's doing well now! His strength is coming back and his balance is better than it has been in a long time. He's got a break now, then he will have another definitive treatment (like the stem cell transplant). This will be a CAR-T procedure, which counts as a transplant too. It's cool technology! Next Monday he will go to UVA and they will harvest his t-cells. The cells will be sent to a company that will bioengineer his t-cells into lymphoma killers. In May, he will have a few days of chemo (nothing nearly as bad as what he's already had), then he'll go inpatient at UVA and the cells will be infused back into his body. Any side effects are likely to be in the first week or two, so he will stay inpatient for a while, then he'll have to stay in the area for another 3 weeks. We are super fortunate that the biotech companies have financial aid for that 3 weeks, and we qualified for it. They will pay for a hotel near the hospital (a suite) and $100/day for food. Jeff and I will split the time. One of us will be in Charlottesville and the other will be at the house, taking care of the dogs.

So, anyway, 2024 (and late 2023) have been difficult. I'm doing well now, but it was rough going. I shouldn't complain about rough going for me, when Jake has had such an awful time, but anyone who has done care-giving will understand. If Jeff hadn't helped out (carrying at least half of the load!) I don't know how I would have made it. I did get pharmaceutical assistance—when I saw my PCP in December I begged for help! I've been on Zoloft since then and it's been a life-saver. Although I titled this Life is a roller coaster, I feel like the antidepressant took me off the roller coaster. It helped me feel much more in control at a time when I needed to be in control.

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When we found out in December that Jake did indeed have lymphoma again, and that he was going to have to do inpatient chemotherapy, I canceled my February trip to SE Asia. I'll do it some other time. I was able to transfer the flights to my trip to Nepal next September, and I got half of the tour money back. I should get the rest of the money back when I get the trip insurance filed—that's on my list.

So, about 2 weeks ago I realized that: 1) Jake was feeling better, and 2) he has a break for most of April with few medical appointments. I asked Jake and Jeff how they felt about me taking off for a bit, and they both said, "Go for it!" Next was finding out where I could go on short notice, and Portugal looked good! So, I booked the flights and a tour. Portugal is a place I could do on my own (no tour), but I just wanted everything handled! (I was supposed to spend 3 days in Lisbon in March 2020—the world shutting down for Covid messed that up.)

I'm in Charlotte now, flying to Logan (Boston) then on to Lisbon. I'll get there tomorrow morning, and meet up with the group tomorrow evening. I'm excited to be traveling, though I would be less tired if I had packed earlier—I finished packing around 2 AM. Hopefully I'll sleep on the overnight flight.

I'm looking forward to taking pictures again. I'm also looking forward to the food and wine! I'll try to post at least every couple of days.