It felt like being in lockdown again. Not that we ever really came out of lockdown – my husband Jim was diagnosed with advanced follicular lymphoma just a few months into the pandemic, so we never stopped wearing masks and avoiding social events.
After CAR-T (“Chimeric Antigen Receptor T-cell” treatment, in which T-cells are removed, genetically engineered to grow cancer-catching proteins, multiplied in the lab, and then transplanted back), Jim was extremely immune-depleted and vulnerable to infections and other dangerous complications, especially during the first month.
So, for five weeks, including a month of post-treatment isolation, we stayed at Koz Hospitality House, the University of California San Francisco’s dedicated lodging for transplant patients.
Koz House has very strict rules: no visitors; masking whenever you’re outside your room; mandatory daily room cleaning, and more. Some patients reportedly complain about the restrictions, but I never heard that. I appreciated the safe environment, and it seemed other people did too; and the staff was helpful and supportive in large and small ways.
Koz House is less than a mile from the UCSF clinic/hospital, and barely a block from Golden Gate Park, which was a godsend. They also provide free parking at the UCSF garage (we left the car there and used taxis), and free admission to the nearby Botanical Garden.
Jim stayed in the hospital for a week after CAR-T, with constant monitoring for adverse reactions. (I slept several nights in his room’s surprisingly adequate sleeper chair.) He had a couple of cytokine reactions from his own immune system’s response, making him weak and feverish, but the hospital staff treated them immediately and effectively.
Before the CAR-T infusion, I encouraged him to talk to his body just as you might explain an unusual situation to a child or pet: “The T-cells will come back to you, better than ever. They’ll feel irritating and alarming at first, but once they settle in, they will be excellent workers. Help is on the way!”
Jim was lucky not to have serious side effects, such as cognitive impairment (that possibility meant he couldn’t drive for two months). We checked for it daily by asking “What city are you in?” “Can you name this object?” etc. He was ok there, but he lost a lot of weight, his blood pressure got scary-low, and he was extremely weak, shaky and sleepy for nearly two weeks.
I began to feel abandoned, and afraid that I’d never get him back. I knew those feelings were irrational, but that didn’t make them less real!
His neutrophils didn’t reach the normal range for three months, so his diet was also very restricted to avoid bacteria, seriously limiting our food options. Besides dealing with the restrictions themselves, it was frustrating to be in a world-class culinary city and not be able to go to restaurants!
There were also quite a few pills. I was glad I had brought TWO day-of-the-week pill sorters: I used one for mornings and one for evenings, which worked well. And Jim had a complex hygiene routine with daily showers, mouth rinses and sanitary wipes.
We had to be hyper-conscious of sanitation in a million small ways. Luckily, COVID had trained us for that, so it didn’t drive me crazy. (Already there!)
There were few public indoor places that Jim could safely go, and CAR-T patients need a 24/7 caregiver for the first month, so I couldn’t leave him alone either. Fortunately, the neighborhood offered lots of opportunities for outdoor walks in Golden Gate Park and elsewhere.
Jim was able to start taking short walks on Day 12, eventually working up to a couple of miles at a time. It was heartening to see his strength and his loveable old self returning day by day.
At one point, I had sniffles and a slight sore throat, and thought I might have to leave and call in our backup caregiver. But I was extra-careful to avoid spreading germs, and my immune system handled it within a day or two. I’ll never take that for granted again!
We applied for and received financial support from the Leukemia and Lymphoma Society, the Lymphoma Research Foundation, and BMT InfoNet, and would encourage others in this situation to do the same, with patience and persistence as needed.
The pre-CAR-T “lympho-depleting” chemo, meant to encourage his immune system to accept the altered T-cells, seemed to suddenly stop the pain that had for months been keeping Jim from sleeping normally. That was wonderful! But after two failed chemotherapy rounds (required to qualify for CAR-T), we didn’t know what to expect.
However, Jim’s one-month PET scan – and subsequent three-month scan – showed the widespread cancer to be essentially gone! I asked the doctor if we could get a screenshot of the before-and-after scans, and he said, “Just take a photo!” Of all the photos I took in San Francisco, that’s my favorite.
Follicular lymphoma is not considered curable, but with a few more years of research and statistics, CAR-T treatment might change that.
We are home now, and Jim is doing well. The biggest challenge is keeping him from overdoing it, or getting exposed to COVID, now that he’s feeling so much better but is still immune-compromised.
This experience brought an amazing flood of love, support and generosity from so many people. When I wrote, for instance, that I had forgotten to bring oatmeal, three people offered to bring some – one from two hours away! Given Jim’s positive result so far, the experience felt deep and miraculous. But even if CAR-T hadn’t worked, so much support and kindness would have felt miraculous in itself.
I wrote a journal of our time in San Francisco, with many photos and vignettes of UCSF and the streets of the city.
If you are a patient or caregiver, I wish you the best in this powerful, terrifying and (we hope) ultimately joyful journey. Stay strong, and be grateful for whatever you can!
The family caregiver plays a vital role in the patient’s recovery.