Still a roller coaster—but with travel!
I’m clearly failing at the whole blog concept. Right now, it’s like every 6 months I do a catch up post, then never really catch up. This may be a longer post, as at the end, I’m going to write about Jake’s illness, as a lot of people don’t really know the details. It’s at the end, so you can skip it completely if you just want my travel stuff.
Last March, I optimistically booked a hotel for the Virginia ornithology meetup at Chincoteague for September 5-8. Amazingly, it worked out and my friend Elizabeth and I spent the weekend birding and lazing. We drove up to Blackwater National Wildlife Refuge (in Maryland) where I was lucky enough to add two new birds to my life list, a Hudsonian godwit (pictured) and white-rumped sandpipers. I don’t add many birds in the southeastern US, so I was pleased!
We stopped at a food truck on the way down Rt 13 and had the most amazing lobster rolls! It was almost more than I could eat, and prepared what they called Connecticut style (warm with butter).
That was my first trip since April, when Jake broke his hip, but it should be the first of many! I’m lucky enough that his brother Jeff covers everything while I’m gone. He stays with Jake and takes him to appointments, etc. That the only reason that I’m able to start traveling now, since Jake is not fully mobile yet. Another month or so and Jake should be able to start doing more on his own, as his hip should be healed.
I’m very excited to start traveling. I’m off for my long awaited trip to Nepal and Bhutan in 10 days.
I’m meeting my friends Ken and Steven in Kathmandu for the trip. We met on the Morocco trip last spring and originally planned this trip for September 2023. (Edit for accuracy: Ken and Steven had planned the trip. I invited myself along.) Last year, there weren’t enough people for the trip to go, so Gate 1 canceled it. (I used my flights and travel refund from that trip for my Southern Africa trip last October.) Anyway, we rebooked for this September, and it’s finally here! We will have 7 days in each country, finishing with a giant climb to Tiger’s Nest in Bhutan.
I wonder if I will be able to walk the next day… We fly back to Kathmandu, and fly out the next day. I’m doing a 3 night stopover in Doha, Qatar, on the way home, so I’ll be going from the mountains to the desert.
Next up is Argentina and Antarctica in December. I finally got my flights taken care of. I’m flying into Buenos Aires 3 days early to explore. My plan is to fly up to Iguazú Falls, but I’m not going to arrange that ahead of time. In January 2025, I’ll join a friend for a week in United Arab Emirates. She’s doing legal teaching and I’ll be tagging along.
After that, until yesterday I had several months at home until mid-March, when I’m again joining Ken and Steven for a trip to Tunisia, followed up by a few days in Malta. But I had a serendipitous moment last night, messaging with a friend who asked if I wanted to go to Japan in March. His trip coincided with Tunisia, but I mentioned planning a Thailand trip for February. Next thing I know, we’ve booked 16 days in Thailand and Cambodia. There’s a sale right now, so the single supplement is waived for Gate 1 trips, so we will each have our own rooms for this trip (though I’d be fine with doing the roommate thing if there weren’t a sale). I met Paul on my trip to Egypt last November. We were two of the three who swam in the Nile at Aswan.
So now I’ve got trips in January, February, and March 2025! After that, I think I’m booking Uzbekistan for October. In between, I may go to Madagascar in the summer, though I’m not sure about that yet.
Of course, all of this could blow up in a heartbeat, but I think Jake and I are due for a break.
I’ve learned a lot about myself in the last year as Jake has fought his battles. First, I am proud that I knew I needed help and went on antidepressants last December. I was utterly overwhelmed by what Jake and I were facing, yet I knew I had to cope and manage. Zoloft to the rescue! Antidepressants are lifesavers. I’ve dropped down the dose a little recently, and hope to be able to wean off them in the next year, but I wouldn’t hesitate to go back on them if needed.
I’ve also discovered that I can do what I must do. It has been a really hard time, but I was able to do it. You hear about how difficult caregiving is, but it’s actually even harder than that. Not infrequently, I’d be doing some mundane chore and be chanting to myself, “I have no life!” Fortunately, I have a life again.
For those of you who don’t know the history of Jake’s illness, he first developed lymphoma (diffuse large B cell lymphoma) in 2010. He had swollen lymph nodes in his neck and we were shocked by the diagnosis. He had 6 rounds of chemo (R-CHOP, every 3 weeks) and went on with life. He did really well with the chemo, and, in retrospect, we treated the illness rather cavalierly.
Then, 7 years later, he developed a bruise on his right shin. Long story short, it was the lymphoma again, this time out of the lymphatic system (stage 4, but that’s not as important in blood cancers like lymphoma). Life was complicated by the fact he’d had a heart attack in 2017, so couldn’t get standard chemo at first. If you ever want to be grossed out, ask me for pictures of this—I documented the lesion through treatments. Anyway, finally (6 months after his heart attack) he could do standard chemo (R-ICE this time). That took care of the cancer, and set him up for a stem cell transplant to try to get rid of any remaining cancer cells. For those who don’t know, the trick here is that they hit you with heavy duty chemo that wipes out the cancer (hopefully) but also your entire immune system, then put stem cells back in to repopulate the immune system. Jake was lucky here, in that he could use his own stem cells (autologous transplant, as opposed to allo), but he was unlucky in that he got an infection 2 days after receiving the cells and went septic. He circled the drain for a couple of days before rebounding, but it made his recovery much harder.
So, that brings us to 2023. We assumed that the stem cell transplant had worked (it did, for 5 years) and were complacent again. In April 2023, while I was in Texas camping, Jake had a “stroke” with left sided weakness. Long story short, he had a brain lesion, but it cleared up with steroids and all stroke symptoms disappeared. He was just unwell all year, with balance issues and brain lesions that came and went. Then his ophthalmologist saw something weird in his eyes. Finally, in December 2023, we got the diagnosis. The same cancer (DLBCL) in his brain, eyes, and lymph nodes all over his torso. This was grim, needless to say. He was very weak and sick. We were seeing a team at UVA (lymphoma specialist, neurooncologist, and transplant specialist). Jake had 2 rounds of a chemo called TEDDI-R as an inpatient at UVA in January and February 2024. He’d go inpatient for 5 day for a brutal chemo regimen, then I’d bring him home where he would be super weak and sick for 2 weeks. But, then, amazingly, the treatment worked. His eyes were clear after the first round, and his PET and MRI were also good.
All of this was in preparation for a new treatment called CAR-T. This is super-cool. Jake is now genetically modified! They remove T cells from your blood and send them off to a biotech company. In Jake’s case, this was Bristol Myers Squibb for their product, Breyanzi. They modify the T cells so that they will attack the cancer cells. The modification can take from 2-6 weeks, depending on the company and the location. When the cells are ready, the patient gets 3 days of conditioning chemotherapy to “make room” for the modified T cells, but the chemo isn’t very bad (compared to most chemo).
So, in this interim while Jake was feeling good, I took off for 10 days in Portugal. On the day I returned, he tripped in the yard and broke his hip (femur head). Surgery fixed him, but it set everything back 2-3 weeks. Luckily, by the time we moved to Charlottesville around May 25th, he was doing well, using a wheelchair and a walker. We had to stay in Charlottesville for 5 weeks, but luckily the company has a foundation that pays expenses. We had a hotel suite and $100 a day for food the whole time we were there. I was worried that the delay might have let his cancer return (low cancer load is better for CAR-T), but his MRI and PET were still good!
Jake went inpatient on May 31 and got his cells on June 3. So simple, really. He got 2 syringes of cells into his IV and then we waited. He did get a break here, as he had very mild side effects on day 4, and that was about it! He left the hospital on day +9, though we had to stay in town for another 2 weeks. He got his bloodwork checked every 2 days and he did great, needing almost nothing infused. We came home at the end of June with nothing to do but drive up for a July checkup and wait for his 90 day scans at the end of August. I’d like to say that we all lived happily ever after, but Jeff took Jake to UVA in July for bloodwork, and when they got home, Jake fell getting out of the car. It took a couple of weeks to get a diagnosis (first x-ray saw nothing), but he cracked his acetabulum (pelvis). So, he’s been in a wheelchair since then. He’s doing PT and should be able to put full weight on the leg again around the beginning of October.
And his August scans? All good. MRI showed no brain lesions, and the PET showed no cancer. So maybe we do get the happily ever after. His next scans are November 25th and we are hoping for a durable remission. Some people with this lymphoma are cancer free 8 years after CAR-T (they did clinical trials, as CAR-T was only approved in 2017), so we do have reason for optimism. Jake is feeling good and looks better than he has in a long time.
So, that’s the long story, although I’ve left a lot out. He also fell in January 2024 and we found out 2 weeks later that he broke his C1 vertebra! With that break, either it’s stable (his was) or you pretty much die. It’s been such a fun year.
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