May 2025
Jackson He
Suleika Jaouad’s narrative touched me in the way a person might touch me, viscerally, on my body, on my skin. We had much in common. We both had leukemia. She had AML (Acute Myelogenous Leukemia), and I, CML (Chronic Myelogenous Leukemia). We both are of the kind that wants to know, to understand what’s happened to our body, what the doctors understood, or didn’t, and what are our choices, or the lack thereof.
But she had it much harder than me. She got so close to the brink of death once, that her doctor asked her dad to come to the hospital from their family home some three hours’ drive away, lest it being his last chance to see her alive. The lowest point in my journey merely involved a week of suspension of my treatment, for my neutrophil numbers to return to a non-life-threatening level. Her AML was very difficult to treat, while my CML was relatively easily, almost painlessly in comparison, treated—although the pain of each bone marrow aspiration was as intense as anything I’ve experienced in my life. As a young woman who had only thought of how to avoid getting pregnant, she had to think of, and deal with, egg-harvesting and preservation, while at the time I was diagnosed I was already the father of two children.
The English priest John Donne famously said, “No man is an island entire of itself; every man is a piece of the continent, a part of the main”. In some way, yes. But in others, no. We are very much apart. We suffer alone from our own diseases. We take our own steps when confronted with illnesses, with deliberation or otherwise.
As Suleika found out, no one can have all her cares. Her doctors rightfully focus on curing her disease, and failing that, treating it to the best of their abilities. But they were not, individually or collectively, focused on her well-being. They forget to mention to her, for example, that once she started chemo, she'd most likely become sterile.
And that, that your doctors have some of your interests as goals of their work, is among the best of scenarios.
The first oncologist I contacted, the chair of the SBU Hematology/Oncology department at the time, tried to push me to quickly decide on enrolling in the clinical trial of a new medication, when I was newly diagnosed and under a lot of distress. While emphasizing the benefit to me, such as the medication being provided to me without charge, he failed to mention any factor against my interest. During those days, as it is now, I suffer from blood coagulation problems, such that each time after a bone-marrow aspiration, the wound would not heal, and blood would try to gash out for hours, even when the wound was dressed with pressure dressing, and even when I pressed on the dressing for those hours. This happened continuously, until one day I had a talk with my doctor (a different one). I showed her that my PCR count of the bone-marrow tracked that of the peripheral blood very well, and therefore it's quite possible I didn't need to have all the bone-marrow aspiration any more. Had I enrolled in the clinical trial, I would have given the consent to have many more bone-marrow aspirations, I learned eventually. And that doctor, upon hearing that I would not want to enroll in the clinical trial, promptly dropped me as a patient, forcing me to seek another doctor, and waste valuable time while my cancerous white blood cells were multiplying exponentially.
But doctors are not the ones we need to insulate ourselves from in the excruciating details of illness. A lot of Suleika’s miseries stem from her insistence that Will, her boyfriend who was almost her fiancé, fully shares her pains and sufferings. This is a sure-fire recipe for disaster, no matter how strong their bond was, and yet Will only came into the picture after her diagnosis. I do not feel that Will was wrong in wanting some respite, and I do feel that she shouldn’t have broken up with him, and when she knew she made a mistake, I feel strongly that she should have taken the first opportunity available to her to say that she’s sorry. Pride in friendship is arrogance.
When people are faced with severe and adverse fate, they seek out supernatural remedies. That is totally understandable in a traditional society.
With modern medicine, and especially when a historically fatal disease is now routinely treated successfully, there should be no more space left for the folklorist cures. But alas, modern societies invented upgraded misconceptions and misinformation to counterbalance scientific and medical progress.
Suleika was led to a guru by her own mom. The guru’s nonsense should have been obvious to anyone with open eyes. Unfortunately, under the urging of “keeping an open mind”, we are too willing to suspend our better judgement, and give license for the crude and unscientific to prey on us. It’s only when this guru was about to insert a dirty needle into Suleika’s arm did her mom pull her out of his trailer.
I had a similar experience once, albeit much less frightening. I was in Yunnan, on a study tour. Our tour leader talked to our tour guide about my condition, and she talked with our local guide, and long story short, a special trip was arranged for me to meet this guru who specialized in leukemia. With so many people thinking, working, and rooting for my cure it’s only reasonable for me to go. The man had a surname He, but it was from a different character than mine. 和 is not used as a surname for the Han people, and this man was not a Han.
Our local guide must have communicated with the guru before our arrival, and the introduction was brief. Dr He, let’s charitably call him that, did not ask what type of leukemia I had. Having lived his life in the Yunnan mountains, it's miraculous enough that he knew of leukemia, and it wouldn’t be right to expect him to keep up with the latest developments, especially new understandings from research done outside of China. He didn’t try to feel my pulses, or take any other steps which traditional medicine used for diagnosis. This I did not blame him either. Leukemia is something related to a kind of blood cell (the white cells), and neither the disease nor the cell type is known to traditional medicine. Therefore, relying on western medicine’s diagnosis is very wise.
Dr He explained to me something about the imbalances in the body that causes leukemia, which I listened to with an affected attentiveness but complete disbelief. I knew of the chromosomal mutation that caused my type of leukemia, the breakage of the chromosomes number 9 and 22 and their crossed connection, the oncogene BCR/ABL resulting from this misconnection, and many other details that I couldn’t expect him to know or understand, and I was not in the mood to put some fancy words into his head so that he could better deceive his next patient/victim.
Dr He then proceeded to sell me some of his specialty medicine. He has a whole pile of it on a table, ready-made, for all types of leukemia. I was pretty determined that I was not going to partake any of that, but to be polite and proper I bought ¥100’s worth of it.
As everyone reassured me, there was no harm seeing Dr He. But there was no harm precisely because I was well-informed about my disease, kept a healthy dose of skepticism, and took none of his advice or medicine. A less fortunate leukemia patient might suffer a lot of harm from treatment like his, as I’m certain that the treatment would be a waste of time and money for the patient, when both time and money are in critically limited supply.
Some people hide their illnesses from the public eye, and that's totally within their rights. People are entitled to their privacy, and their health status is one of the most private of their affairs.
Yet Suleika chose to put her own story completely in the public. She practically broadcasted the progression of her leukemia and her treatment from her ward. With that, she gained a lot of friends, and readership, from her hospital, and from everywhere else. I applaud her for her effort. Diseases happen to all of us, and when people choose not to reveal their own illnesses, they lose the opportunity to bound with someone going through the same kind of crises in life, they lose the possibility to share their knowledge, and they lose the possibility to help save fellow patients.
I chose, by not making a special effort one way or another, the middle ground. I neither publicly announce my illness like Suleika did hers, nor making any effort to keep it a secret. A few years ago, when Leukemia and Lymphoma Society was still doing the Light-the-Night walks, I participated in the walks actively, resulting in once becoming the second highest fundraiser in our county (or maybe Long Island). But other than these "walks", I kept a low profile. I never hesitated to admit my illness or share my knowledge whenever the topic came up, but I never volunteered the topic if it was not raised by others.
Like Suleika, I gained friendships, happiness, as well as sadness through these exchanges. When informed of my leukemia diagnosis, a mentee of mine that I had never met in person came to Long Island to see me, which moved me so much that I could find no words to thank her. And I shared my knowledge and experience fighting the disease with a few fellow patients, through friends of one or two degrees of separation. One of them I'm still in contact with after many years, even though we've never had the opportunity to meet in person.
My sad experience was, in a way, sadder than any that Suleika wrote about. It was a man that I was introduced to, and again we never met in person. He was very talkative, to the point that it was very difficult for me to put in a few full sentences during a phone conversation of an hour or two. And he was very stubborn in his believes, which included that chemotherapy was evil, and one could never come out of it alive, and yet doctors never told you the truth. But he knew a guru in Florida, he told me, who was going to treat his cancer using natural and wholistic methods. Our phone conversations ceased after he went to Florida. I learned that he came back to New York a year and half later, when his disease progressed to a point that it was not treatable any more. I understood why my friend Eugene introduced him to me, but I simply was not able to help. Had CDC kept accurate stats, ignorance and misinformation must have been two leading causes of death.
When diagnosed, I was not young any more. But for Suleika, life was just laying out its promises in front of her. She had to juggle chemo-therapy with sex-life, manage and balance between her (serial) boyfriends and her own independent self-growth, and decide between the medically more sound option of freezing embryos and the emotionally and legally less messy option of freezing her eggs. And one of her age-peer and fellow patient, Melissa, was even put in the pediatric ward in Sloan-Kettering, of course with less to do with her age than the kind of cancer she suffered from--but her age wasn’t that out of line either. (She turned out to be a favorite among many boys in the pediatric ward.)
Childhood cancer is so very cruel precisely because cancer is largely an age-related family of diseases. The more we live, the more we are likely to be visited with it. And the more its life expectancy grows, the more a society is confronted with cancer’s savages. But children’s DNAs are young and intact, with long telomeres that help to protect them from random mutations. They are the furthest from suffering from cancer, but not insulated from it.
From my early youth, one of my rationales against the concept of God is childhood cancer. If God is as wise, benevolent, and mighty as he is believed to be, he should recognize that children are innocent and blameless, and they should be treasured and protected. The concept of children could be punished for something someone else did, possibly long before their birth, is impossible for me to accept. It is so anachronistic, so out of touch with the modern, enlightened mindset. Precisely because God is mighty, in allowing childhood cancer to exist, he is cruel, and unjust.
In the beginning, I was talked into visiting Sloan Kettering Memorial Hospital, the best cancer hospital in New York and neighboring states. This is the same hospital Suleika went through her BMT. But I chose the closest location of SKM that had a blood cancer component, which turned out to be a big mistake. The doctor I saw was very knowledgeable about using BMT to cure CML, which had not been the standard of care ever since Gleevec, the magic bullet for CML, was approved by the US FDA. Sure enough, she had not seen a CML patient for the previous 6 years, she told me.
To the novice that I was at the time, BMT sounded very enticing. Gleevec, and drugs like it, works by blocking the activities of the oncogene BCR/ABL. It is expected to be kept up for the life of the patient. If it is stopped, the vast majority of patient would see their leukemia come back. BMT, however, is a true cure, albeit one that comes with risk factors and potentially very serious side-effects.
I contemplated the difficulty of potentially finding a bone-marrow match as a minority in the US, and as a person who did not have a full-sibling in this world. Suleika, although luckily having a brother who was a perfect match and a willing donor, had to go through extreme suffering before and after the bone-marrow transplant procedure. (Nowadays it’s generally referred to as Stem-Cell Transplant, because, like what Suleika and her brother experienced, the medical practice has transitioned from extracting a donor’s bone-marrow, a very painful process, to filtering their stem-cells from their blood.)
For the purpose of blood transfusion, it is well known that the ABO blood typing is used. Under this system, the general population is split into four groups, of blood types A, B, AB, and O. For BMT, however, there are dozens of blood typing markers to look at, and half siblings are usually no better matches than perfect strangers, I was told. But half-siblings are all that I’ve got. And as a minority member of this country, my chances of getting a good match is greatly diminished. Fortunately, for CML patients like me, targeted medicine became the standard of care, and BMT or SCT are not needed any more.
Aided by modern targeted medicine, CML can be suppressed to very low levels,
just like many other chronical diseases, such as diabetes and hypertension. But
for AML, there is a ways to go yet.
Suleika's story was so uplifting partly because through her illness and her treatment, she found a new career and her calling. And her self-growth was palpable.
And I truly appreciate that she opened up about her illness and her fight. By sharing her experience, she showed to innumerable people that cancer is not a death sentence, but a chance to find a better self.