I turned 38 today. A fun number because my lazy climbing shoe size is also 38. So much happened since I last wrote, aeons ago, at the end of September. Writing a comprehensive update of all of this seems impossible. So I hope you don’t mind that I will split it into smaller sections, one per day, throughout this week. These will be: health/travel, work, art, and leisure.

Towards the end of 2024 I ventured to think I could be done with being awfully ill. I hadn’t had any hospital stays in a year and a half. My blood counts stabilized after coming off of cyclosporine. And so Qianqian and I planned my first foray into travelling (my first flights, too) since I came home from Oman in April 2023. We bought tickets for Costa Rica — direct flights there and back, close by air, strong healthcare system, massive tourism infrastructure*. I got an ear infection on our first day, went to the clinic in La Fortuna, and received antibiotics. Scared about a return of the bone marrow failure, we returned the following day and waited for five hours just to get a blood test. I just wanted to know. QQ remarked at the time how amazing it is that I can become sick in so many countries. It’s true — I knew to ask for a “BH” instead of a “CBC” due to my experience in Mexico. My blood test was abnormal but in line with that of someone with an infection. Very high neutrophils. We felt relieved, and I slept the next day away. I improved over the course of the week, with no real symptoms by the time we returned to Florida ten days later. So I thought, “This is even better! I got sick while traveling again, but I was fine. That means even if I get sick when traveling, that I’ll be fine. I’m sorted!”

A few days later, I began feeling feverish and weak. It felt familiar. I knew what it was at the onset, but I didn’t want to and convinced myself that I just needed to rest. I rested. I made a large meal for Jingru and her sister and QQ and her sister in spite of my fatigue and mild fever. I rested the next day. But I knew. On New Year’s Eve, first thing in the morning, I went to the UF Health Cancer Center for a blood test. Indeed, I had zero neutrophils. QQ and I packed for the hospital. We went back to the Cancer Center to try to get a g-csf shot based on a standing order I had from my hematologist, knowing that it would take a lot of demanding to get that once admitted inpatient. After an hour, we were told that they couldn’t do it. No hematologist was on call/available, the nurse practitioner wasn’t able to order it, and the Cancer Center wouldn’t administer it without the doctor’s order.

This time it felt both comfortably and uncomfortably familiar. We drove to UF Health Kanapaha Emergency Center again, enacting the same protocol with which Dr. Mathew recommended my hospital admittance the last time. I checked in at the desk, got an IV placed, then waited in the car while they found me a room. Once a room opened up, they needed to do more bloodwork and my initial IV was uncooperative, so I had another IV placed in my other arm. In the hours since the morning blood test, my lymphocytes and other cell lines had all continued to drop. Qianqian stayed with me, Wenli joined us later, and we waited for twelve hours for a room in the Intermediate Care unit (Intensive Care but not exactly). Wenli turned on the television near midnight and the New York City Times Square ceremony happened as I fell in and out of sleep. They went home as I transferred in an ambulance to the main UF Health complex — again sadly familiar to me. Then more tests. X-ray. CT scan. More blood tests. IV antibiotics. That familiar, awfully loud chirp of a stopped IV line. The hospital gown.

I wasn’t allowed to shower in this ward. I was also always hooked up to many monitors and could rarely leave my bed, even when the antibiotics (Vancomycin and Cefepime again) weren’t flowing. Still, my previous stays made this one less arduous in many ways. I requested a slower release of Vancomycin, which preserved my veins for longer. I only had to have five IVs placed in total. I experimented with breathing and clenching muscles to manipulate the graphs on my hospital monitor for my amusement. When released, I timed my laps around the room to return to the monitor every two minutes to silence the whining. QQ helped me demand lactose free food (hilariously they felt the need to check for lactate dehydrogenase this time, testing that more regularly than other more relevant ones), which resulted in a delivered caloric intake of around 1400 calories. I felt no guilt for supplementing this with boiled veg courtesy of QQ’s parents. The rhythm of IV antibiotics, unpredictable nurse and doctor visits, and bits of sleep made each day speed by.

My team of doctors, it turns out, is known for being a poor one. After getting out of the hospital, I mentioned that I had a particularly low quality of care, and the unaffiliated nurse I was speaking with identified the team immediately. Luckily, Brent (who came up to Gainesville), QQ, and I knew what I needed. The team, however, took a lot of convincing to administer g-csf. They refused to do flow cytometry to test for LGLs, stating (without basis) that the fact that I had a low-grade fever would render the results irrelevant. This request for LGL testing came from my team at NIH, who, in stark contrast to my inpatient team, responded immediately to my emails**, with compassion, curiosity, and respect. Dr. Young even gave us a wonderful compliment — “very good investigation from a “lay” person, I must say.”.  My inpatient team also refused to do a bone-marrow biopsy with the same false rationale of the fever (remember, my first bone-marrow biopsy in Oman was done when I had quite high fevers around 40+), failing to divulge the real reason that I was aware of – they had no one on staff at the moment capable of doing bone-marrow biopsies. Only one hematologist was around, and she had started just two weeks prior. In the end, they discharged me after five days, in a decision that seemed borderline malpractice as I had only just begun recovering neutrophils and was discharged with 0.29. Anything lower than 0.5 neutrophils is considered severe neutropenia and generally requires hospitalization.

In the end, this hospital visit did afford us a new theory (that which elicited Dr. Young’s praise). I was given amoxicillin in Costa Rica for my ear infection. This was the same antibiotic that I was given in Botswana before I was hospitalized in Kyrgyzstan shortly thereafter. So I set a rule in my health spreadsheet to highlight all instances of Amoxicillin and the corresponding interval between starting to take it and the following zero neutrophil/pancytopenia events. The correlation is striking, with the five events since 2021 occurring 15, 15, 11, 14, and 15 days after having taken amoxicillin. This data is slightly confounded by the presence of at least two instances of amoxicillin (from 2009 and 2012) which have no documented follow-up neutropenia. Additionally, the first event occurred in 2018, and I have no data of what antibiotic I was prescribed in Russia. But just the existence of any theory at all is somewhat comforting here.

I have been mostly healthy in the month and a half since. No big drops in cell lines. In fact, the pattern between my zero neutrophil events tracks so closely that Brent was inspired to graph (attached) the events against each other centered on the date of “bone-marrow restart”. But once again, just when we felt cautiously optimistic about health, future, and travel, we are uncertain, worried, and confused once again. I want to believe that I can just avoid amoxicillin and be done with it, but my hematologist and I agree that it doesn’t explain my markedly hypocellular bone marrow, my high LGL count, nor whatever underlying condition would need to exist for the amoxicillin to be a trigger to cause my blood cells to up and die en masse. Each time I’ve had amoxicillin it was prescribed for an infection — what is causing all of those infections in the first place and is the amoxicillin a red herring? So… I don’t really know what I’m “allowed” or advised to do. Do I travel? How far? Can I work with children again? How many? Do I studiously avoid crowds (I haven’t been)?

No answers just yet. But perhaps some more in the following parts.

*A far cry from the travelling that I yearn for. You may, of course, know that the places I most wish to travel (yes, there’s a spreadsheet for that) include Iran, Mali, Yakutia, Dagestan, Ethiopia, Brazil, Kurdistan, Papua New Guinea… When recounting this list, my Russian (language) teacher burst out laughing and made me promise not to go.

**Up until two weeks ago, though I have a suspicion that the slow/lack of response since then is due to their unfolding existential crisis.