Diagnosis: It was a trip to an alternate reality. Not out of body, but out of sound mind. As though my consciousness had changed its voice. Confidence was replaced with uncertainty and fear. A sense of lying to myself, peppered with a side sense of immaturity, as though talking to myself can somehow make this situation better, while all along I know better. This could be happening. It may be happening to me.
Fear of the uncertainty gripped me. Not in the way that we fear the unknown. I love the unknown. But instead, the uncertainty that my unwavering cliché confidence of “it could never happen to me” was about to be shattered before my eyes. And shattered it was, by a digital screen, nonetheless.
Jared. Jared, Jared, Jared. I’m not supposed to remember this name. This is the name of someone I don’t even personally know. A person I had to have a Zoom meeting with as a formality because they wanted to work in my research lab. A person so inconsequential that I was perusing my email while a team member provided this information, and I hoped my eyes didn’t dartingly indicate distraction while I posed an attentive face. But this was the person I was in a meeting with when the email popped up. The dreaded email I had been waiting for. Some blood abnormalities, including an immature cell, had led to a test that led to a test that led to these results in my email. I opened the email. Something this bad can’t happen while I am on a call with meaningless Jared. This happens with loved ones by my side. With some comfort. Not at work in the middle of a busy day. Information, information, information, and scrolling, and there are the BCR genetic results. POSITIVE. Wait, don’t I not want positive? Why the heck does positive sound good, yet never is good for medical tests? Why are we supposed to spend our lives aiming for unique success and achievement, yet strive for being medically “unremarkable?” Positive. OK, what is this? I see the fine print underneath and scan and scan and there it is. In text, I still can see to this day it reads, “unfavorable diagnosis.”
F**k! I wish I had more of an elegant thought to report, but this is what unconfidently rattled through my mind while I tried to rationalize this problem into a misunderstanding. I still get a feeling of anxiety just recalling that afternoon. And then I felt. I felt. Alone. Just, simply, alone. Alone in a way nobody can understand, and I realize nobody can understand in this moment, because in my world, I just drew the short straw. I’m the sad story you hear about. I’m the unfortunate and unlucky one. What the hell? I’m young and healthy, and naively strive to just make the world a better place. How. In. The. Hell. Is. This. Real.
I feel alone. I don’t want to tell anyone. I tell my wife, and the sadness grips harder with the reality of each word and tear. Telling people sucks. It makes it feel worse, and I honestly can’t figure out why. Maybe it’s because I don’t like burdening others with bad news, I’m an optimist, I like making others happy. Maybe that’s just me making myself sound good, and it’s just painful. Maybe it’s both. I strangely felt guilty. Weirdly happy I had chronic myeloid leukemia (CML) and not something worse. I am just a wanker for not appreciating that I got a condition with a treatment route. Why is this such a mental mess with no charted course to follow? I’ve never felt so unsure, and never felt so alone.
I didn’t feel alone when they had to do the bone marrow test. I felt those eyes on my back as I screamed louder than I ever told myself I wouldn’t because I’m tough. Guess what? I’m not that tough, and that hurt like hell. I would have taken twice the pain just to switch sides. I feel like I’m on the outside looking at people who now appear to feel sorry for me. The sympathy is an illusion in my mind, but it’s hard to separate reality from fiction in this alternate reality.
Advice: My advice is lame and cliché, but coming to terms with the situation does get easier. Shock wears off. Time enables us to process. I still feel alone, but I empower myself with my situation. I set goals, and I try to be the best at having CML. I fail at that. I fail hard. But the effort puts my attention on progressing. Moving forward. We must move forward because time won’t stop for fear and sadness. So, my advice is to feel the pain, let it stretch your mental capacity. With the stretching comes elasticity and an ability to put life into a newer and broader perspective. Appreciation builds where before it was stagnant. Life is amazing. Every second of it. We don’t have to make the best of the situation. That is BS and overly simplified. But we do have to deal with each situation. Find the way that gives you some control. Control empowers, and an empowered mind feels like it can still grow and improve despite our disease. This is part of us. Not all of us. And we change and will never stop progressing. This too will progress, and with progression will come a better understanding and ability to cope. It does get easier.
Treatments and Medical Team: Medications, medications. The wonderful world of medications. Just when I thought coming to terms with having CML was an arduous process, picking the best of the worst superseded that without fail. As a scientist, I pored over the papers on each TKI and woefully realized they are all miserable. The side effects sound like a choose-your-adventure of misery, hahahaha. With each seemingly positive attribute that makes one medication seem like a better approach than another, a nugget of uncertainty coupled with conflicting information quickly dilutes the comparison, and I am back at square one. These are all miserable.
I stay positive. How LUCKY I am to be living in a time of modern medicine to have this option. It is not lost on me. But the nagging, selfish voice in my head will not stop reminding me that this is an unlucky card to draw. This could be better. EVERYONE else isn’t dealing with this. I know this is not true, and I don’t like these thoughts, but they are there.
I make my choice, and the pill bottle arrives. I find reasons to wait another week. Best to be feeling perfect and not confounding the side effects. There is no perfect. There is no reason to wait other than the fear of the new reality. I will never forget the first one. The sense of unrealistic fear that it will turn into a demon inside me and roar out of my ass in the form of fitful diarrhea. Nothing happened. How uneventful. Now I just wait, and wait, and anxiously wait.
The side effects happen, and some days are better than others. But the most difficult one was the side effect that didn’t exist. It was my own inner demon. My fear and anxiety. Cranked to 11, waiting to see what the pill does to me. I wish it didn’t take so long for the medications to transform from little demons in my pocket to what they really are. Medications. And miracle medications at that.
Support System and Coping Strategies: My wife was able to support me in a special way. A sad, special way. Her father passed away in his early sixties from multiple myeloma (MM). What are the odds?
Losing her father to multiple myeloma was painful and still feels unfair. The sentiment of fairness always weighs on the mind with cancer, no matter how illogical. We feel entitled to an undefined and unknown barometer of fairness. It shouldn’t happen to me, to us. All the while, it happens to everyone, one way or another, one day or another. Something “unfair” lurks around all corners of life, such that sadness and pain are strangely the world’s balance of fairness. This sounds far more macabre than it should, but part of coping is to recognize we all share this human experience, but it just comes in a multitude of realities. My wife’s experience helped her develop strong emotional resilience. I feel no burden to help her deal with the shock and sadness of my diagnosis. I still feel bad for some reason, as though I played a part in this cruel twist of fate that her father and husband were both diagnosed with forms of blood cancer. Those internal, confused feelings are minuscule in comparison to the strength she provides me by guiding me to see the positive, the path forward, the side of the situation that makes me feel like I got a fair deal. That I am lucky to respond to treatment. That I am lucky to be alive each day. As crazy as it still is to type those words, it is true. I am fortunate. How unfair for all of those to be diagnosed before the development of targeted chemotherapy. What are the odds that I would be diagnosed young, but still be so lucky that I have access to TKIs? What are the odds?
My best friend from childhood has Von Hippel-Lindau (VHL), a rare disorder that results in the inability to suppress tumors that tend to form on the liver and nerve endings. We both have rare genetic mutations resulting in cancer. What are the odds?
There is a strange happiness in sharing a brutal emotional experience with another human. It sounds as though I am saying I’m happy that we both got the short end of different sticks. That is not what I mean. It’s not schadenfreude, but rather finding yourself all alone on the side of the road in the dark with a flat tire, and down the way, you see a light. You walk towards it. You’re miserable. Then you see it is another person on the side of the road, and they have a flat. Upon recognizing you’re both in the trenches, you will laugh. You will see the comedic tragedy of life, and you will laugh. It is strangely funny. More importantly, it is an undeniably more enjoyable scenario when you aren’t the only actor. When you aren’t alone. We laugh at how bad it gets, how annoying it is to be dealing with appointments and the spiraling anxiety of waiting for test results. We joke about how much we miss drinking with friends without thinking about how we can’t really drink and shouldn’t have another. It’s funny because we can’t talk about it with doctors, who can’t see the humanity of losing parts of our lives that were unhealthy to begin with, but were fun. Socializing is fun, but now it is different. Not bad. Just different. At least I’m not the only one who is different. To share the experience makes one feel more human because another human understands the pain, confusion, and rare moments of elation. Another human was dealt an “unfair” hand, a rare hand that we aren’t supposed to be dealt. What are the odds?
Outcomes and Resolution: Do I really have leukemia? Typing it, saying it, thinking it. Despite all the ways to acknowledge it, it still doesn’t feel real. Do I really have leukemia? Sure, sure, sure, I vividly remember the mental pain of waiting for results to arrive to find out which of the “worst case scenarios” is my actual scenario. I remember lying sleepless at night, trying to mentally prepare for that moment. Walking to my children’s room. Climbing into their beds to listen to them sleep to distract me and find comfort knowing that I am spending this moment in time being as close to them as possible. Crying. Crying with helplessness when I realized they are way too young to be the ones comforting me. I will never forget that bizarre concoction of emotions. Nor can I forget the sharp pain of the bone being pried from my hip to get a full determination of my leukemia. Another surreal moment in time, with pain so real, clouding a moment that seems completely surreal.
How can I say it doesn’t feel real? Why wouldn’t it feel real? But then I am mowing my lawn. I am at work. I am picking up my kids. I am living my life in the same motions as if nothing happened. Was it a dream? Is this real? How could one doubt an experience so jarring? How does life just continue like an old song, one where you remember exactly when the chorus drops, but somehow always forget a few words. In the middle of a meeting, I remember. In the middle of cooking, I remember. In the middle of swimming, I remember. I never realized how naively blissful life is without a voice providing constant reminders of the painful baggage forever sewed onto my body, my leukemia.
Each day is different, and surviving feels like hyperbole compared to the reality of navigating. Picking a path each day, some better and some worse. Always navigating because there is no time out. No pause. No way for everyone to understand. No way to expect the clerk at the counter to be sympathetic to my reality when they are living their own. I navigate living in a mental isolation shrouded in frustration wondering if I am the only one. Is this real? The journey certainly is, and it goes on. Each day a new day. Constantly finding new ways to be happy, to be angry, to be sad, to be appreciative, to feel unfairly treated, to just try not to think about it. But think I do, and wonder I do, and alas I ask, is this real?
John
chronic myeloid leukemia (CML)
