To spare you the suspense, I have been re-diagnosed with Large Granular Lymphocyte Leukemia (LGL-L). For those of you who know about my severe illness and near-sepsis in Oaxaca, they ruled out leukemia at the time. It appears the doctors at Médica 2002 were mistaken, though one cannot fault them at all as the disease has a suspected prevalence rate of one in three million (incidence rate of around 0.2 per million per year). The median age is 66.5, with less than 14% of those with the disease under 50. A few days ago, I watched and interacted with CGP Grey’s Rock/Paper/Scissors video, and reached one in fourteen million playing honestly (which from view counts of the videos it seems is not a common tactic). It reminded me, inexorably, of my condition.

Health

From what I understand, my suspected LGL-L diagnosis does not supercede or redact the Aplastic Anemia diagnoses from February and May, but rather provides a possible cause for those Aplastic Anemia events and discounts Severe Aplastic Anemia, which requires a treatment (ATG or bone marrow transplant) I have not undergone. The NIH suspects that I have the T-cell variant of LGL-L, due to the many clones of a single kind of T-cell found in my marrow. That’s what qualifies this disease as cancer. The diagnosis seems highly inconclusive, however, as I do not have the specific mutations related to LGL-L, though the rarity of this disease makes the research very limited. It was only discovered in 1985 by Dr. Tom Loughran at the University of Virginia. I am arranging an appointment to see him in Charlottesville in February with the assistance of a travel grant.

It has been rather a long time since I wrote my last update on August 22nd. I hoped to spare you the uncertainty that has been plaguing me, and am writing you now as I finally received a summary letter from the NIH detailing their hypothesis and findings yesterday. As I wrote in my first update, many of these bone marrow and blood abnormality conditions seem to overlap. Some people in the LGL-L support group I have joined have both AA and LGL-L. Quite a few have an auto-immune disease as well. Few seem to have precisely the presentation that I exhibit, with the multiple life-threatening events with no neutrophils (the guardian of the blood) and quick rebounds. There is a theory that my strange medical history is due to my extensive travels exposing me to many more diseases, thus bringing the condition to the open, and allowing diagnosis early. This, however, is directly rebuffed by the prevailing wisdom that the infections caused are not due to environmental pathogens but rather endemic ones. This is true in my case, with my serious infections all caused by native bacteria such as E. coli, H. pylori, Parvovirus, etc. For those medically inclined among you, I set out these numbers for reference – my CRP has been as high as 338 and my Procalcitonin as high as 4.29 (these are both large numbers). There also seems to be a possible link with adult-onset cyclic neutropenia. The team at the NIH is still awaiting results of my full exome study (the study where they sequence all of my genes), but I’m not particularly hopeful that there will be anything revealed there.

It would be difficult to explain my condition further without delving rather far into medical jargon (you can see how it has been nearly impossible already). To put it as baldly as I can, it seems I have a misbehaving white blood cell that’s copying itself and eating my other cells, especially my main immune system champion cells. The prognosis of the condition is chronic, with no cure, but it is manageable with treatment – the same cyclosporine that I have been taking since May. Some patients suddenly have their chronic condition become acute, with life-threatening ramifications. At any rate, the NIH has kept me on the same regimen of medicine for now, and with my fistula declared completely healed as of a month ago, I am now adjusting to life while managing the condition. Nowadays, I worry most about if and when I’ll have another crisis of depleted blood cells and an active infection; is the cyclosporine enough to diminish that chance? But this is a silly worry. Shouldn’t I be able to allay that worry, as I had lived before my knowledge of my condition and had survived.

Psyche

Throughout these months, I have been meeting with the Aplastic Anemia Support Group every week via Zoom. I cannot overstate how extraordinarily helpful they have been. The couple who run it are filled with compassion, patience, and upbeat optimism. Tessa wrote a book on her experience dealing with her husband’s Aplastic Anemia that I have purchased. I am inspired by this example and their deep faith to write and share my own story. It has been difficult to start however, though these updates are, in and of themselves, a small step in that process. I already have the drawings to accompany my story. Now I need the words.

Two members of this group (I still go despite my diagnosis being different, now) and I are in a group chat together. I have asked them so many questions about the peripheral particulars, regarding water-consumption, cyclosporine side effects, fighting with insurance and hospital billing departments, and most recently, the depression that comes with the aftermath of diagnosis and the start of treatment. In a message to them, I wrote that due to the desperate situation in May “I was pleasantly surprised to find that I was not at all frightened of death. I was ready for it. Strangely, I think the aftermath of the disease has made me afraid of life.”

This fear evinces itself in myriad ways. I’m so uncertain about how much I should return to “normal” activity. I don’t know if I should try to exercise, as the last time I tried to ease back into it I immediately had more symptoms from my surgical site, and my blood counts are still not normal. I don’t know how much I need to avoid people – on Sunday I went to the nearby Micanopy Fall Festival and felt extremely uneasy the entire time, speeding through and leaving quickly due to the crowds outdoors. I’m still masking just about everywhere despite my neutrophils being decent. Confusingly, cyclosporine suppresses my immune system, and also causes anemia. I don’t know how much thought and effort to put into job searches, travel plans, and future plans in general. Qianqian had a dark thought a few days ago, where she says that she keeps telling me to rest (I haven’t been, really), but second-guesses herself, because what if my days are numbered and that rest is keeping me from achieving the things I’d like to do? How does one balance cautious, responsible decisions with a desire to live life fully?

The little things bother me the most, ironically. I need to avoid the sun due to the high correlation between cyclosporine and skin cancer (QQ says I don’t want to collect cancers, too). I abhor the muscular atrophy – I was once so athletic, climbing every other day for three hours, cycling often, walking at “Terrence speed”. Unwanted hair growth from the cyclosporine, persistent weight gained, mild tremors and aches just enough to make drawing a little bit more difficult, fatigue hitting with the regularity of my neutrophil troughs, the allure of forbidden travel, the teaching I miss so dearly. That is not to say I have been idle, however.

Greater Gainesville International Center

Most of my time since my last update has been spent working in a volunteer capacity with the Greater Gainesville International Center. This is an outgrowth of the Sister Cities Program that I have been involved with for many years. I poured most of my energy into writing a Grant for the Stevens Initiative, proposing to run a virtual exchange program like the ones I ran in 2020 and others we’ve run before. Gainesville, FL, is unique in having the only three-way sister city relationship with a city in Palestine, Qalqilya, and a city in Israel, Kfar-Saba – two cities very close to each other by distance but far by time due to the border wall completely encircling Qalqilya. Our relationship was instrumental in the creation of the new Al-Amal school for the deaf in Qalqilya, and we’ve been hopeful for continued parlaying of this friendship to connect the two cities and peoples. Over the past few weeks, especially, the writing and organization of this grant has felt pitifully futile in the face of decades of history and ongoing Nakba. But, as Lauren Poe, the former mayor and head of our organization says, we should not give up in the face of what is happening. We check in with our friends and counterparts in Israel and Palestine, we let them know we are thinking of them, and we plan for a better future. The grant also includes an exchange with our sister city in Duhok, Kurdistan, Iraq, with whom my students designed and proposed a pair of sculptures for Gainesville and Duhok (approved by the county for funding, but stalled for some time due to politics, it would seem).

In addition to the Stevens Initiative, we send delegations to and from our sister cities. For example, Gainesville, FL was the first US city to pair with a Soviet city, ever, and sent/hosted the first citizen delegations between the US and the USSR ever. I’m currently trying to collect this history into a website archive and an exhibit for our local history museum, the Matheson. We run cultural events (such as an international food festival that has jump-started the international businesses in Gainesville such as Flavorful and Ethiopian Organic), connecting locals to host International students over holidays, “Welcoming Week” to welcome new US citizens, refugee resettlement, language access measures, shows for charity such as this fabulous opportunity to see Al-Firdaus group, and a lot of other things. Here’s my local station’s profile video.

I won’t mince words here – the GGIC needs money to continue existing. Many of you are looking for ways to invest money for the greater good in the world. If that is you, and you find yourself in the very fortunate position of having a surplus of capital, please donate. If all goes well and we receive enough donations – on the order of $100,000, I could become employed by the center full-time. I could continue teaching and connecting students and cultures, using my languages and art daily in a safer environment for my health condition. This is not an entirely selfless ask – I dream of being able to do those things that I do well and love to do.

Personal Projects

Aside from the GGIC, I’ve continued to draw as much as I can around town – 318 drawings since the last update. I’ve collected my drawings from Alachua County into a single map (though I seem to be missing some drawings I did with students on field trips with Oak Hall). Ultimately, I plan to combine these into a book and print them for sale locally. I’m nearly done with all the pins on my map. Inspired by my Greek teacher, I’m also looking into Print-on-Demand services to create prints, sketchbooks, and other things with my drawings. I will be sending out a poll about this, taking orders, and making a kickstarter for the various books of drawings (such as Islamic architecture) soon. If you don’t want to be included in that email, just let me know. I’ll keep the email lists separate. These projects of mine are the best way to help me from a financial standpoint – as many of you have asked, as I want to be sure I provide something of value in return. In that same vein, I’ve released my albums for purchase (download) online, as well, on my website.

These projects, as well as my weekly lessons in Greek, Russian, and Thai, keep my spirits buoyed somewhat as I deal with the frustrations of seeking governmental assistance, imagining a future, and finding ways to contribute despite and because of my condition. I haven’t been able to receive unemployment assistance, for instance, because I have been disqualified in Florida because I am sick and not actively seeking full-time employment. I am disqualified in New York due to my claim in Florida. I have applied for Social Security Disability, but the average processing time is 354 days. I’ve been connected with a grant to help Leukemia patients with outstanding medical costs thanks to Cody from the LGL-L support group. I try to respond to and research all the updates in my health as soon as they happen (this weekend there was E. coli again found in a test, so I need to determine if I need antibiotics for that). I am trying to get past my fear of living in this limited way.

I am so extremely blessed to have friends and family supporting me and nearby. Pauline has told me that QQ is my angel. She’s unquestionably supportive and sometimes I take that for granted. Her parents shower us with love in the most Chinese of ways – food at all times. My mom putzes around trying to apply her scientific knowledge of blood (she did her PhD on haptoglobin) to charts and positive hypotheses, Brent researches everything, and stays on top of all of the data, asking questions when I forgot in the hospital, Jimmy and Brian are always around to chat or play a distracting game. I was extremely moved yesterday when my friend from Kyrgyzstan, Janybek, called me because he wanted to send me money to go towards my medical troubles. My aunt Ruby has been a wonderful support for me across the country with regular emails, too. There is much to be grateful for.

Please excuse my now extremely delayed responses to some of your wonderfully kind emails. I will respond, just be patient with me, please.