I am doing relatively well. In December, my complete blood cell counts recovered to normal levels for the first time since my hospitalization in Oman. They’ve been more or less normal since then, and Dr. Mathew already began tapering my dosage of cyclosporine. The fistula seems to have healed completely – even the keyhole defect. I tested negative for E. coli for the first time since Mexico in 2021. Next Tuesday I see Dr. Loughran, the man who discovered LGL-Leukemia, in clinic at UVA Health. Then, on the week marking exactly a year from my admission to Muscat Private Hospital, on February 13th, I see Dr. Holland, immunology and infectious disease, at the National Institute of Health to follow up on my full exome study. And while it may be of little import in comparison to the other news, a week and a half ago, I went climbing for the first time since the night before I was hospitalized in Oman – something of huge symbolic weight to me. My inbox has only six emails, as I finally responded to almost every email I received. If you did not receive a response, email me again. Maybe I missed your email. Please continue to email me. I can now respond in a much more timely manner.

Health, naivety, and knowledge

After my last email, many of you expressed sadness and concern about my diagnosis. So I wanted to allay some fears while adding some of my own. LGL-Leukemia is not a “typical” leukemia/cancer. Its treatment is rarely aggressive, and the general life expectancy is long. The median expected years listed in many studies is 9+ years, which obfuscates the true prognosis somewhat as the median age of diagnosis is 66.5. I am slowly returning to many of the things that I enjoy, and the chief impact I should expect from a diagnosis of LGL-L are the side effects from medication. These are the tremors, fatigue (often quite debilitating), weight gain (~3.5kg), nausea, sensitivity to sun (high incidence of skin cancer), compromised immune system, mild anemia, and high blood pressure (before December consistently 105/68, today 140/90) afflicting me. Naturally, those side effects are rather non-trivial. As I write this, I struggle with an abundance of tension and jitteriness accompanying high blood pressure, aches, and pains. You may note that the quality and coherency of my writing has deteriorated. But as I am already tapering off of cyclosporine, there is hope that those side effects will cease as well. Yesterday, my hematologist expressed her hope that the cyclosporine entirely eradicated the Large Granular Lymphocyte clone responsible for my pancytopenia episodes (death of all blood cell types), and that perhaps I can be weaned off the treatment entirely.

However. However, no one, none of my doctors, are convinced that LGL-Leukemia is all I have, or if that is even the correct diagnosis. With all the confounding factors (no travel, semi-isolation and precautions, no longer working in a school), the slow return of my cell populations could be a case of correlation rather than causation. In plain English: I could be getting better regardless of the medicine, and continued discomfort could be caused and not allayed by that very medicine. Last time I wrote of trying to excise this worry. I haven’t been able to. It’s still my primary concern. The more I learn about LGL-Leukemia from my own research and the small population of patients in a support group (there are usually between three and five people in our zoom calls), the more my own case diverges from any common threads among others. The paragraph above assuages worries based on a typical presentation of LGL-L. My presentation is anything but typical. Most other patients have indolent variants, with no infections, hospitalizations, or other life-threatening events. I had many. In fact, as I continue to organize my medical history for my upcoming visits, my own records, and the book I am drawing, I realize just how life-threatening these previous events really were. How ignorant I was!

I yearn for that ignorance, sometimes. I checked myself out of the hospital in Russia against the advice of the medical team and continued gallivanting around with Brent. I didn’t even pay attention to my blood cell counts. I didn’t understand until recently why I was in a hospital ward all by myself – I thought that was standard for Russia because it was my only experience there. In Mexico, I carried on teaching, translating, stumbling to the students’ hotel for advisory meetings, and taking a day trip out of the city with QQ between medical procedures (CT scan, Endoscopy, Colonoscopy, blood tests) and clinic visits with a very concerned Dr. Carlos. The gravity of my situation escaped me. I laughed at his pronouncement that I “didn’t have leukemia”, because I never seriously considered that I might. I thought it was standard procedure in Mexico not to be hospitalized, until he explained again that he sent me home to isolate specifically to protect me from staph infections, COVID-19, and other hospital-transmitted illnesses. It was only thanks to QQ’s friends that I checked my blood pressure then. I didn’t understand those numbers, really. Now that I look them up, I’m terrified for my past self. They were as low as 66/38 – close to the fabled 60/40 level that immediately precedes death. In these instances and others, I didn’t understand, and so I continued life at my typical speed and intensity almost immediately after. Now I am reluctant to do so simply due to that knowledge. Is this wisdom? Or fear?

Travel, fatigue, and conundrums

During my trip to UVA and NIH, I would love to see any of you who are in the environs, as well as on the route there and back from Florida. I believe I already contacted everyone that I know to arrange this, but if not, I probably forgot that you live along the way. Please tell me, and soon, if we might see each other. As my numbers stabilize, I see more and more people, eat at restaurants, and am generally being more social. I am still sorting out the balance between social desires and physical safety in my level of isolation. This does bring me to a bit of a warning, actually. I look and seem healthy. A strange warning to issue, to be sure. I found that some of my interactions have left me feeling awkward, like an imposter, even, due to having no visibly discernible illness. I walk more or less normally, I have decent energy when I have it at all, and I have a truly absurd amount of hair. Much of this awkwardness lives in me. I suppose most those who see me don’t fault me for not looking sick. It’s a perverse thing, though. I feel strangely guilty about it all – about looking well, about not working at present… if anything, I push myself to perform in company, pushing myself to be as much like myself as possible and then crashing afterwards. Unfortunately, this unhealthily caused my exhaustion and frustration to emerge chiefly around those who have been the most kind and staunchly supportive to me – QQ, my mom, Brent, Jimmy, and Brian.

My route will be something like the following:

• 2024.02.03 Gainesville->Savannah
• 2024.02.04 Savannah->Charlotte
• 2024.02.05 Charlotte->Charlottesville
• 2024.02.06 UVA appointment with Dr. Loughran
• 2024.02.07 Charlottesville->DC
• 2024.02.07-2024.02.14 DC, with perhaps a day trip to Baltimore or Philadelphia
• 2024.02.13 NIH appointment with Dr. Holland
• 2024.02.14 DC->Raleigh/Wake Forest
• 2024.02.15 Raleigh/Wake Forest->Brunswick
• 2024.02.16 Brunswick->Gainesville

Regarding travel in general, I feel very torn. Brent correctly identified that I treat these trips to the NIH and other hospitals as travel excursions to make up for the dearth of proper travel in my life. There is a specific bullet point on travel in the FAQ written by Dr. Loughran’s clinic for LGL-L patients – “Generally, we consider travel safe.” Yet I fell severely ill mostly when traveling. QQ framed it well during a quiet moment when I pressed her on something she seemed sad about. What if my specific case will result in an early expiration? Shouldn’t I then travel as much as I can before that happens? Do I travel because my time may be short, or do I abort that part of my life in hopes of a longer existence? As with the guilt and confusion above, I don’t know what to feel about my responsibilities. They are so disparate. I need to stay as healthy as I can for those who love me, to allay their sadness and worry. Conversely, I wish to return to life as it was (insofar as I can), as I miss those things so very much. I want to teach again – for myself and for a desire to be of value through this profession I trained so much in and feel I do well. When leaving a memory may hasten the imminence of one’s life becoming a memory, I am left rather uncertain as to how to proceed.

GGIC, employment, and support

I previously related the recursive administrative stupidity in regards to my unemployment. Since then, Social Security has also denied me assistance (over the last seven years, I paid $20k into it through my employment). I have not been deemed healthy enough to qualify for being fit to work and receive “reemployment” benefits from the State of Florida. At the same time, I am not deemed ill enough to qualify for SSA. In contrast, my application to the Leukemia & Lymphoma Society Copay Assistance Fund took a few minutes and I was approved the next day. Administrative bloat is an awful thing. Outside of medical costs, however, my expenses are minimal. QQ owns our house. I have never spent much money (my brother Kevin once said “The thing about Terrence is his dollar goes far.”, to which Brent rejoindered, “Imagine if he had two.”). I worry about the future, though. But how lucky I am to be able to worry about it at all!

Specifically, I worry about GGIC. We did not receive the Stevens Initiative Grant I applied for. We are incredibly close to becoming an affiliate of the International Rescue Committee to resettle refugees in the Gainesville area, but in a Catch-22 situation, we have a final financial hurdle. We need our financial books in order for a federal grant (a non-trivial ask), with an employed accountant and staff trained to help refugees. Helping refugees settle in Gainesville would be the core of GGIC – the most important thing I imagine we could possibly do. We’re so close to that (about $40k short). It felt like providence to be contacted by IRC to help with this work. It felt like something I could transition to in my own work situation – contact with much fewer people than teaching, providing constant opportunities to practice and utilize my languages, to “travel” without traveling in an even deeper way than the taste I had being a host on CouchSurfing. What more meaningful thing can I do, now that I cannot teach in good conscience (maybe Dr. Loughran will give the green light on teaching and traveling, who knows), than help refugees in search of a home? If you want to help, and can: https://www.gnvic.org/ways-to-give.

Art, music, and inspiration

Since my first update from the hospital bed on June 2nd, I shifted my grander focus to collecting my artwork in books and other forms more accessible to all of you and the wider world. I completed my book of drawings from Alachua County and am simply awaiting a proof (for print quality) of the book from Kindle Direct Press before I release it for purchase. My hope is that this book will grace the shelves and coffee tables of stores (and homes) around town. Before I print, I would love your opinions as I make a few final tweaks. The draft pdf is here. The main task is to cull some of the images, as I expect the book will be too long. My student Michelle suggested that I also sell them in smaller booklets by category, and I will endeavour to accomplish this as well. I’ve drafted the sections for a book of drawings of Islamic Architecture, too – this one needs much more aggressive culling.

Aside from these books, I have done a few commissions locally. MJ, in particular, has been an amazing friend and supporter, recommending me Chiang Yee’s books and helping me get started with selling digital prints. Soon I will be sorting turning my thousands of images into printable formats onto mugs, t-shirts, and art prints. For starters, I will be printing a drawing I made of the Aplastic Anemia support group for those in the group. Now that I’ve completed or commenced all of these projects, I’ve finally begun writing out my medical experiences with images, inspired by Chiang Yee and various graphic novels. I’d love your input here. I’ve chosen a style of presentation between that of my drawing books, Chiang Yee’s narrative heavy work, and Craig Thompson’s more traditional graphic novel style. Does it work? Does it need more writing (such as the style of these updates)? More images on a page? Should I utilize the already developed conventions of graphic novels such as drawn borders and grids? My concept is to use only drawings I made during the experiences. Luckily, I draw a lot.

Recently, I found a lot of solace listening to music, and I hope to make some soon. These are the songs I might learn. Please do send me more suggestions. Once I feel safe enough, I hope to do a belated CD release show for my two albums. I’ve gone through all the royalties and administrative fees to properly sell digital copies, and I would be grateful if you considered purchasing one. I’ve been thinking a bit about how our habits have changed since the internet – how we don’t purchase music or art anymore, because it’s all accessible for “free”. We’ve all done this without really thinking that our free consumption generally means that the artists receive nothing, either. Since releasing the albums online, I’ve made $22.86 from streaming. Hilariously, my most streamed song, by far, is my cover of Пусть бегут неуклюже from Чебурашка, with 4,088 streams ($19.33).

I’d like to end this very long update (perhaps the length of my update scales with infrequency) with a note on inspiration. At the end of 2022, I had the extraordinary opportunity to meet Tolgahan Çoğulu, the world’s pre-eminent microtonal guitarist. He inspired me for many years. We met and chatted briefly, and it turns out that he is an even more amazing person than I imagined. He responds to my emails immediately and encourages my amateur musicianship. So I am now inspired by him as a person as well as a musician. Then there’s Anna Maria Hefele, an expert in overtone singing with a pure tone, with whom I’ve exchanged many emails. Steve Bradbury, a brilliant graphite artist, professor of Chinese, and translator of poetry. Ibtihaj Al-Harthi, whose diligence in her children’s book illustration practice captivated our students in Oman. And finally my name twin, Terrence Ho, who devoted his life to caring for his brother and helping people die well. I wonder if I might ever inspire anyone in the same ways.