by Brad Buchanan

Being a cancer survivor isn’t all that it’s cracked up to be, especially when you have another disease to remind you of what it has cost you to achieve this status. For recipients of allogeneic stem cell transplants such as myself who suffer with acute and/or chronic Graft-versus-Host Disease (GvHD), the badge of honor that goes with cancer survivorship loses its luster in a big hurry.  

“So,” you ask, “what is Graft-versus-Host Disease?” 

I’m glad you asked; because I didn’t. When they first told me about GvHD, I simply nodded blankly. It wasn’t more cancer, and that’s all that mattered to me. You see, I had a rare and malignant form of T-cell lymphoma that managed to create a massive tumor in my left lung and lit up my PET scans like Christmas trees. My lymphoma was so fast-moving that even aggressive chemotherapy didn’t put it into remission long enough for my doctors to go through with an autologous stem-cell transplant (i.e. one where I would be my own donor). We skipped straight to the allogeneic transplant, where I would need a donor, and therefore would run a much greater risk of dying, straight off, and of getting more GvHD symptoms.

The answer to your question, by the way, is that GvHD is the disorder that occurs after a patient gets a transplant from a donor. The most common way of explaining GvHD is to say that the patient’s immune system “attacks” the rest of his or her body, typically targeting certain areas such as the skin, the eyes, the mouth, the lungs, the stomach, the liver, the intestines, the pancreas, the genitals, the joints, and the kidneys. In my case, just before I was scheduled to be sent home from the BMTU after having received my brother’s stem cells in January of 2016, acute GvHD ravaged my epithelial layer. It covered 70% of my body in an itchy, peeling rash; it scratched up my corneas, leaving me blind for more than a year; and it ripped through my colon, producing seemingly endless bouts of diarrhea that left me passed out on my commode for long hours at a time. In the words of my oncologist, “for this degree of GVHD there is no treatment; most wither and eventually succumb.”

Yet I managed not to succumb. I hung around long enough in the BMTU for my transplant team to try one last-ditch treatment option: a process called Extracorporeal Photopheresis (ECP) which treated the aggressive T-cells that were causing my GvHD with light and a chemical called psoralen. This treatment, as far as I can tell, was the most important factor in saving me from death, and I still get regular ECP treatments today, since my once-acute GvHD has become a chronic disease. 

So here’s the really weird thing about GvHD: it’s a disease you have to choose. Nobody contracts GvHD out of nowhere; in fact, you have to jump through a lot of hoops to get it: you have to hope for a donor who will give it to you, in most cases, and you have to suffer through quite a few other discomforts in order to have the privilege of suffering from it. In fact, transplant recipients are coached, as I was, to see some symptoms of GvHD as a positive sign that their new immune system is working to defend them from cancer. As the National Bone Marrow Transplant Link’s booklet on GvHD says, “mild [chronic] GvhD can be helpful… When your new donor immune system attacks and harms tissues and organs, it also targets any cancer cells left in your body.” 

At a recent conference on GvHD, I asked a panel of experts about possible new genetic tests that might lead to new therapies that could mitigate the effects of GvHD, pre- or post-transplant, and one of the doctors gave a telling reply. He spoke of how little is still known about what he called the “magic” of the transplant process, and observed that some degree of genetic mismatching is needed for the desired anti-cancer effect of the new immune system to be achieved. In essence, they don’t want to mess with the donor’s or the recipient’s genes too much in case they switch off the wrong genetic trait, disabling the very immune system that is supposed to keep cancer at bay.

For my part, I can definitely say that I actively wanted GvHD rather than cancer, because my form of T-cell lymphoma was so scary, so quick to come back after chemo, that I felt that anything else would be preferable. My ignorance of the eventual consequences of my transplant was perhaps a form of self-protection, since I might have been reluctant to put myself through the rigors of chemo and Total Body Irradiation only to end up as I did, half-dead with a disease that has damaged me and no doubt shortened my lifespan dramatically. 

I had high hopes that my donor, my younger brother, who was a 10/10 match for me according to the DNA tests, would provide me with just enough GvHD to ensure that I would be cancer-free but not so much that I actually died. The 10/10 match in itself didn’t guarantee an easy process, of course, since there were all sorts of other genetic markers they didn’t test for. In the event, I had a whopping case of acute GvHD that nearly killed me, and a chronic case now that still induces itching rashes, gut pain, and daylong episodes of lethargy and discomfort more than three years later. However, as I tell people who express fears about the stem cell transplant process, I would still choose to have GvHD rather than face my old cancer again. 

Still, being a GvHD patient poses its own challenges. Many people who know me well still don’t (or won’t) grasp the fact that, though I supposedly “beat” cancer, I am still suffering from a disease I can’t quite shake. The doctors I see for my GvHD-induced skin issues—my GvHD-related trouble with swallowing (which leads to scary choking episodes), and for my GvHD-caused eye problems—often seem completely clueless about the cause of the problems they are supposed to be treating. A recent visit to a gastroenterology clinic brought me and my wife to tears of frustration at being assured that some strange webs of flesh in my throat (known GvHD symptoms) would not recur after being dislodged by some freelancing doctors who were supposed to be scoping out the problem. 

The Nurse Practitioner assured me that my problems with choking were unlikely to be related to my GvHD, since other patients without GvHD had similar issues. He thought I must have acid reflux instead, though I take a medication to prevent exactly this problem and have felt none of the symptoms of reflux in years. I wanted to ask him, “Do you know anything whatsoever about GvHD?” but his dismissive condescension flustered me too so much that I was reduced to an embarrassed silence. Less than two weeks later, an ENT doctor stuck a tiny probe down my nose and found that (guess what) those webs of flesh were back. 

If medical personnel are so ignorant and incurious about GvHD, what can I really hope from the general public? Whenever I get on a plane wearing a surgical mask, I wait for someone to ask a version of the question I got recently from a flight attendant: “Are you wearing that mask for yourself, or for us?” 

It took me a moment to process his inquiry; after a brief reflection, I realized that he was, essentially, asking me if I was contagious. 

“For myself,” I answered simply. “I’m not sick.”

 He was satisfied with my response, but part of me wanted to add to it. I had an urge to be more honest and frank about my condition, and to educate this man and everyone like him in a single long rant.

“Actually, I am sick, in a sense,” I wanted to say. “I’m sick in a way you can’t possibly understand. I have this weird thing called Graft-versus-Host Disease because I’m a genetic freak, a kind of monster, something called a chimera. They have messed with my DNA so that I could survive cancer. I made it out of a hellish medical predicament that would boggle your fucking mind, but I’m still sick. I can’t infect you or anyone else, but I’m still sick. Sometimes I feel like I will never not be sick again, but that’s none of your goddamn business, so please just let me wear this stupid-looking, uncomfortable mask for the next 8 hours and leave me alone.”

Of course, I didn’t say this to him, or to anyone else on that plane. For the entire duration of the flight, I successfully played the role of a healthy but oddly cautious passenger, patiently waiting for a drink, or for a vacancy in the cramped bathroom, sanitizing my hands before and after touching anything. Yet all the while I knew that my pose of “just being careful” was a fraud. Not only was I still sick, as a GvHD patient, but I was my sickness in a profound way that I am still only beginning to find words to explain.

When I was a cancer patient, I did everything I could to feel that my disease didn’t define my identity. I played soccer as long as I could, kept hammering away at my professional projects, worked on Lego projects with my kids: I was trying hard to believe that cancer was just a phase of my life, a year or two’s worth of pain and inconvenience, but no more than that. As a Graft-versus-Host Disease patient, I don’t have that luxury: my disease is now part of my DNA, I am both the graft and the host at the same time, and the thing that makes me sick is also protecting me. The enemy of my enemy is my friend, as the saying goes; even if I suffer at the hands of my “frenemy” (as I like to call GvHD), there is no point in fighting back or distancing myself from the suffering. The prevalent discourse of cancer survivorship these days, which celebrates “standing up to cancer” as if it were a bully who will back down in confronted with sufficiently brave defiance, leaves me cold at the best of times and emotionally exhausted at the worst of times. The idea of “fighting” or “beating” anything or anybody these days just makes no sense to me anymore.

There is no “fighting” my GvHD, and there is no sense in which I can “beat” it. My disease is not who I am, nor is it all that I am, but it is me and I am it.