I think writing one update a month will be a manageable schedule for me. Immediately, that reveals that I am now able to think in such longer terms. I’m no longer acutely worried about a sudden cessation to activities, as it were. Much of this comes from my recent spate of doctors visits over the last month. With how much time and energy these take, I wonder how those with jobs, or those with much lower red blood cell and hemoglobin counts manage to get through it all. I’m rather in awe. As before, I’ll divide this message into multiple sections. I’m experimenting with adding the images into the email this time, as many of you expressed preferring email to the blog (which has a better layout for images). Please let me know if you no longer wish to receive the emails; I will not be offended.

All the world’s experts and nary a diagnosis

Since my last update, I have seen my healthcare team at Shands in Gainesville, FL (Hematologist, Immunologist, Infectious Disease, and Surgeon), sought a second opinion at Moffitt Cancer Center in Tampa, FL with Hematology, and finally spent the last two weeks in Bethesda, MD at the National Institute of Health (NIH) to see Hematology, Neurology, Immunology, and Genetics. With all these visits, I still have no proper diagnosis. There is consensus emerging, however, that I do not have Severe Aplastic Anemia. But for lack of a better term for what ails me, they are continuing to call it that. Whatever I have, it’s clearly even rarer than either Aplastic Anemia or Cyclic Neutropenia. My doctor at Moffitt, Dr. Sallman, summed it up nicely – “You have cyclic aplastic anemia. Which doesn’t exist.”

Dr. Mathew, Dr. Cousins, Karnelian (Receptionist)

My disease/condition is particularly confounding because I have had multiple instances when my bone marrow does not function. We do not know the mechanism that shuts it off, and perhaps more confusingly, what causes it to turn back on. The doctors wonder which comes first – the infections or the pancytopenia (death of all cells), and we have insufficient data to conclusively determine the nature of the cycle. This cyclical nature has been borne out with increasing evidence ever since returning to the United States. Despite having no mutation in my ELANE gene – which indicates cyclic neutropenia – my blood cell counts have continued to follow a periodicity of approximately fifteen days. Today, as I write you, my neutrophils are at a wonderful 3.4. Ten days ago, they were at a level of 1.79. Fifteen days before that, they were at a neutropenic 1.53. The regularity is striking, even while mediated by cyclosporine (as it seems to be). And no one knows where this is coming from – acquired on my many trips abroad, perhaps, or innate/genetic and dormant until later in life.

At any rate, my many doctors (as I am still in contact with the wonderful doctors in Oman, I am currently in regular contact with fifteen) concur with me – while we are rather interested from an academic standpoint about the nature of the disease and its mechanics, we don’t need to fully understand to treat it. My doctors are hopeful that the cyclosporine that I am taking is preventing my lymphocytes from entirely destroying my other cell lines. There is a small amount of non-conclusive evidence that this is the case, as the wave function of my blood cell counts (specifically my neutrophils) appears to follow something akin to f(x)=sin(x)+c, with that lovely constant steadily pushing the nadirs from complete absence of neutrophils to severe neutropenia to moderate to mild to normal levels with each successive cycle. If the centre holds, perhaps things will not fall apart, eh?

You can continue to track my cell counts here.

An Ode to the NIH

Even so, the NIH specifically has enrolled me in a number of protocols. I’m actually not quite sure how many. Last week they ordered 68 vials of blood drawn, a CT scan with IV contrast, a full neurological exam, and a bone marrow biopsy. All of this was done within a week as an outpatient. All of it was free – free monetarily, free of insurance fights, free of confusion in scheduling or where to go, free of all those additional stressors which make navigating the healthcare system in the United States such an absolute nightmare. It is for that reason that I’m offsetting my experience at the NIH in its own section.

Healthcare at the NIH is how healthcare should be. It is, in its very existence, proof of concept that healthcare could be this way. One of my nurses told me she stayed at NIH because of the humane way they are allowed to treat patients. They can order tests without worrying about insurance ramifications and battles or the cost to the patient. They are allowed to think of the patient’s health first. This attitude pervades the NIH. During each of the four clinic visits I felt like the doctors had time for me, that they cared to know all of the details, that they wanted to help me. I never felt rushed, and I was speaking with the preeminent experts in the world in their respective fields. The NIH was also blessedly light on administrative bloat. One nurse coordinator is in charge of my case. I simply call her to sort things out. When the hematologists were advised of my neurological symptoms, they quickly arranged an appointment with neurology for two days later. (I’ve been waiting six years to see neurology and neuromuscular at UF Shands. My current appointment is set for January 2024, after having been canceled and postponed many times prior. I fully expect that I will receive a call a week prior to the appointment saying that the schedule has changed and that the next available appointment is six months away.)

Olga (nurse coordinator), Dr. Lee, Dr. Patel, and Dr. Young

Everything at the NIH is efficient, humane, and done with extraordinary professionalism. My phlebotomists (the nurses who draw blood had plaques on their desks celebrating 25 and 30 years of service. They organized themselves brilliantly to draw 26 and 38 vials of blood without interruption. One hand resting and holding the needle with the forefinger and thumb while the lower fingers manipulated the vials in and out. The other hand swapping out the vials in a systematic order down the rows of the tube holder. As the vials filled, the phlebotomist used their other hand to confirm the draw on the computer and place them carefully back in the tray in an organized fashion. The technician for my CT scan was similarly adept. My bone marrow biopsy was the least painful by far of the three I have had.

Dr. Al Qahtani, Dr. Carolan, Nurse Bascombe

On my final day at the NIH, an additional day unplanned for but taken as an opportunity, I joined a genetic study. They will sequence my entire genome and look for errant actors. In learning about this, I kept thinking back to something my colleague Neeki wrote me shortly after hearing about the severity of my condition – “The world needs more Terrences not less!” Well, it now seems like that is something that can be realized.

Cindy (nurse coordinator), Vickey (nurse practitioner), Dr. Holland, and Rachel (genetic consultant)

In the leadup to this genetic study, my immunologist, Dr. Holland, gave some sage advice. He asked about children or the plan to have them, and we responded that we’ve paused that idea for now on account of everything. He told me what I’ve told my students in regards to many other things. If that’s what you want, do it now. Genetics isn’t destiny. Compassion and wisdom like that as well as the humility on display all around heartened us immensely. Dr. Young told me immediately that he didn’t know what ails me, but that he would try his best. I believe him.

Returning home again

I will need to return to the NIH for follow-up studies. At the very least, this will be once a year. For now, the treatment plan remains the same. I will continue to take cyclosporine, but am eager to know if/when I can be tapered off of it as I do not tolerate it well. I have a surgical exam under anesthesia to monitor the fistula and possibly place a seton scheduled for early September. My local immunologist and hematologist are mostly monitoring while the doctors at NIH take the lead. So I’m returning, more or less, to normal life.

Making 餃子 at QQ’s parents’, Blues Creek Ravine, Headquarters Library

A lot of this daily life consists of tasks related to my condition. Much of my time and energy is spent fighting with insurance. I have been saddled with two bills for $4,500 due to genetic tests not being covered under the insurance from THINK Global School. I was not informed at any part of the process that the test (a blood test) was anything different, and since I received the bill, I have been on the phone for many hours every week trying to resolve it. The hospital bounces me around their various departments, while the insurance refers me back to the hospital. I’ve also been reticent to purchase G-csf (granulocyte colony stimulating factor) due to its extremely high cost – $1,700 for four shots on my insurance. Since the NIH doctors advise me of its importance, I am now considering purchasing it – it could be quite literally life saving.

Home with family and friends

The mental load of the medical system takes its toll in a different way from the disease itself. There are courses of action, however, which makes my situation much easier than that of my loved ones. I believe (having been in both positions recently) that the caretaker burden is a much more difficult one than that of the patient. As the sick party there’s nothing for me to worry about, just things to do. My wife, brother, and mother have struggled mightily through my illness – it’s for this that I wish to improve more than anything. My daily routine is saturated with tasks to do when I am well enough to do them. I am diligently working through my to-do lists, chief of which is responding to all the messages you have written to me. I believe I am approximately half way through. I have not made as much headway on the artistic endeavours as I would have hoped, however.

Books, Drawings, Albums

At the end of last month I submitted my TGS Drawing books to the local library art contest. They enjoyed them so much that they’ve added them to their permanent collection. This is a dream come true for me, as I spent so much of my childhood in the Alachua County libraries, and now my work is a permanent part of them. Aside from this, however, I haven’t made much headway into publishing my work. I must again ask you all for assistance here. The authors and publishers who I emailed have not responded, though Kevin Liao had the brilliant suggestion to go with an academic route, which I will now try (I think I’ll start with my Yale professors and the Yale University press). I’ve distilled the books I want to make into the following:

• Medical experiences as a graphic novel – a comparative medicine graphic novel (with the NIH?)
• 100 (I miscounted) Countries, with three to four drawings per country (landscape,building, person, object)
• Religious architecture
• Islamic architecture (working with Professor Rizvi?)
• Busking
• Making my own sketchbooks with my drawings as covers (Paperblanks?)

Many of you have asked to see my more recent drawings, as I was keen on posting my drawings from my time at TGS first on my Instagram. Now that those are completed, I have been posting drawings that I’ve done since returning to the USA. As I am only doing six posts a day on instagram, I wanted to once again include my personal website, which has all of my drawings well categorized for perusal, including my most recent output from home, DC, the NIH, and the road trip North and South to get there.

Road Trip

Buc-ee’s, Cracker Barrel, Vollis Simpson Whirligig Park, Carolina Cheese Co., Civil Rights Memorial (Richmond), Egyptian Building, Polegreen Church, South of the Border

We decided to drive to the NIH mostly for the flexibility, which turned out to be an excellent decision owing to a storm which canceled many flights. Brent also identified that I wished to drive because I’m incorrigible and wanted to make a tourism out of it. Well, we succeeded at both. Specifically, I wanted to see some AP Art History works (Monticello, Jahangir preferring a Sufi shaykh to kings, the George Washington statue) along the way and in the environs, as well as some cultural sites. It’s interesting to me that I still have this drive to expand my teaching of AP Art History, when I haven’t taught it formally in two years and have no upcoming opportunity to teach it again. Perhaps it is my way of hoping for a future – gathering drawings and photographs of AP and related works to teach students that I have not yet met, thereby assuring to myself that I will teach again. I was too tired to make the trip out to Fallingwater after my first consult at the NIH, and my plans to drive to Philadelphia to see the Venturi house, the Kiss, Mont Sainte-Victoire, an Ikenga, and the Asante gold weights were similarly put off due to more requests for blood work and general exhaustion.

George Washington, Monticello, Jahangir preferring a Sufi shaykh to Kings,

When I was ailing in the hospital in Muscat, my doctors advised me to change professions and lifestyle. Travel and teaching are contraindicated due to my high infection risk. Drawing, playing violin, and playing guitar is difficult due to my tremors from the cyclosporine. Climbing and any exercise exacerbates my wound and fistula. I’ve gained five kilos since my admittance to the hospital in Oman. I’ve been obstinate about continuing to draw, however. While I dream of future employment, I have successfully applied for and received unemployment assistance from the State of Florida.

Condensed requests and an International Center

Please continue to email me updates on your own lives. I may be slow to respond, but I do read them immediately. Share my work – my website, my instagram, my music – far and wide. Suggest me publishers and collaborators, or better yet put me in contact with them. 

As before, I’ll end this message with a video short. Again made my local PBS station, this one is about the non-profit organization that I am on the board for, the successor to the sister cities program that I have done so much work with.

• Greater Good – Greater Gainesville International Center 
• Gainesville Sister Cities – website designed by my students and myself
  • These websites were turned into collages which are in front of city hall by Ponz and his classes

GGIC Board Members Eli, Jeremi, Steve (Chair), and Lauren (Director)

That’s all for now.

Terrence