So, how'd you find out?

My journey through the Leuking Glass.

Everyone wants to ask. No one wants to ask. 

I figure there are numerous reasons people hesitate to ask about a cancer diagnosis. Some people fear being impolite, as if bringing it up will be yet another painful reminder of the diagnosis itself. I can empathize. In the days following my diagnosis, retelling and relitigating the story was exhausting, to the point where sometimes I didn’t even have the mental capacity to give my numerous well-wishers a return call.

Other people, I assume, might pause before asking the question out of a fear of uncovering some horrible truth about themselves. Once you hear how someone else’s diagnosis occurred, the anxiety can wriggle into your brain. “Those symptoms didn’t sound that crazy.” “I’ve had that happen to me before.” If you’re anything like me, the “What ifs” start spinning immediately, to the point where it proves impossible to shove them back in, like when a glob of toothpaste accidentally escapes its tubular confines.

One thing is certain: “How’d you find out?” is an anxious question - one laden with curiosity and emotional baggage.

So, how did I find out?

It’s impossible to pinpoint the exact date that my cancer started. I was, up until quite recently, a very healthy person. Rarely sick, I usually shrugged off illnesses. But then, in early December of 2024, I got struck down by two nasty colds in a row. I managed to kick the first one, then had a couple days reprieve before getting laid out by the other. At the time I chalked it up to having an infant in daycare. Those places are petri dishes, I told myself. But I’m somewhat of a hypochondriac. I definitely took note of the fact that I’d never had two subsequent illnesses like that before.

Then, around the Christmas holidays, I had some intense back soreness along my trapezius muscles, spreading across my shoulders and stretching through the muscles hugging the spine. I had a ready-made explanation for this, too: I was something of a gym rat. I told myself I’d just gone too hard during my recent back workout. I made an appointment with my primary care physician and she prescribed some muscle relaxers, which seemed to solve the problem well enough. At least I could sleep comfortably.

But then, a few days before Christmas Eve, I experienced the first symptom that sent alarm bells ringing. While getting ready for bed, I noticed I was feeling a bit flushed, so I took my temperature. Just a low grade fever. I tried to put it out of my mind and crawled into bed. Then I realized, ugh, I forgot to pee before bed. I rustled out of bed and stalked to the bathroom. Starting in the bathroom and intensifying as I returned to the bedroom, I got the most intense chills. Hunched over at the foot of my bed, shaking like a dry leaf in a stiff breeze, I asked my wife, “What the fuck is wrong with me?”

In the ensuing week, more strange symptoms appeared. I had headaches that lasted longer than a day. A general feeling of fatigue that never abated, even with daily naps and solid sleep. I noticed myself getting winded more easily. My three-story townhouse evolved into a gauntlet. I remember struggling to catch my breath, heart pounding in my ears and chest, after carrying my little one up the stairs to her room on the third floor. A nose bleed appeared out of nowhere and lingered for a couple of days. No matter how much tissue I stuffed up my nose, the bleeding never quite stopped, like when the knob to a faucet has been left just open enough for the water to pool along the rim.

The thing that made me finally make another appointment with my doctor was the bruising. I woke up one day with massive bruises on the outside of my right bicep. To be fair, I’m the kind of person who occasionally smashes into door frames when I try to walk through them, so the bruise itself wasn’t a huge shock, but these deep purple contusions seemed different. I decided I couldn’t ignore the growing pile of weird symptoms any longer.

I visited my doctor on Thursday, January 4, and told her what had been going on. She decided to run some blood tests for “fatigue” to get a better look under the hood. The next day while I waited anxiously for the results, I went to the gym. Like all of my recent weightlifting sessions, it was a struggle. I hadn’t been going regularly, so I did an all-around upper-body workout. Pullups, shoulder presses, chest flies, tricep pulldowns, curls. I kept a gym diary, and noticed that the weight I was pushing that day wasn’t quite up to my normal standard. In hindsight, the last line of the diary reads like a dark omen: “Got tired, ended workout.”

My wife and I went on our normal walk that evening. On the walk, I broached the subject of my health. She can attest that health concerns have always been a preoccupation of mine, but the anxiety had spiked with everything going on. While pacing down the street, I asked the question, "Do you think it's cancer?" She rejected that outright, instead speculating that it might be anemia, which would make sense given that she had similar symptoms many years earlier that turned out to be diet-related anemia.

The next day, Saturday, January 6, was a relatively normal day. I still felt tired. The bruises on my arm showed no signs of dissipating. Then, around 8 PM that night, my doctor called me. I missed her call because I was upstairs helping put my daughter to bed and didn’t have my phone on me. But I knew something was wrong as soon as I saw the text message she left: “Please call to discuss your lab results.” She even gave me her cell number.

I dialed her cell, already hyperventilating. She told me that there were numerous serious irregularities with my blood work. My white blood cells and hemoglobin levels were well below the normal thresholds. My doctor was particularly concerned about my platelets, which I learned are the cells that form clots to stop bleeding. The normal range for platelets is 140-400 cells/uL. The number next to my test results: 6. Critically low. The type of low that means a severe cut could lead to bleeding out. My PCP had said the phrase “catastrophic brain bleed” on the phone. Well then. That explained the days-long nosebleed.

My doctor said I could wait for an appointment with a hematologist, but that might take days and she was gravely concerned. Remember, “catastrophic brain bleed.” In her mind, the best thing to do was to go to the emergency room and get an immediate work up. During the phone call, I struggled upstairs and put her on speaker so my wife could hear everything. We made the decision to wake up our infant (as any parent can attest, that’s a weighty decision in and of itself) and head to the ER.

When we arrived, it didn’t take much convincing for the ER doctors to get me in the door. The triage doctor was so slammed that, upon seeing my labs, she said, “Well, they’re definitely going to admit you,” and kept moving. They ran some tests of their own and confirmed the low blood counts. From there, I got admitted to the hospital and spent the next two days getting put through the paces. An absolute battery of tests. Nose swabs. CT scans. More blood work. They gave me an infusion of platelets to keep my levels above critical. During my first day, the hematologist assigned to my case came by for a chat. He was a character. His first words to me were, I shit you not, “Well, John, you’ve got weird blood.” He assured me they were going to get to the bottom of it, leaving no stone unturned.

The last test was a bone marrow draw. All of the other tests had come back clean. In fact, the last time I remember experiencing a huge wave of relief was when my hospital internist came in to say that my CT scans all came back clear. Yet here I went, trundling along in a medical gurney, down to the radiology department. The radiologist gave me some medicine to calm me down (praise be) and some more to deaden the pain. During a bone marrow draw they take two types of marrow: one is the liquid form and the other is an actual piece of bone with marrow attached. The procedure requires some hand drilling and elbow grease. Also, the needles are massive, at least 3-5 inches long. But even with all that length, they couldn’t get any liquid out of my bone. It was as if some West Texas wildcatters had struck a dry hole. I asked them, nervous and maybe hopeful, “Is that normal?” One of the radiology techs offered a bland reply, “Yeah, it happens sometimes.” They forewent the liquid portion and just took a second sample of bone, and I got shuttled back up to my room.

Waiting for the results was agonizing. It was the last hurdle I hadn’t cleared. My whole family made plans to come up to the hospital. The next day, my dad and sister were in the room with me, perched on the sofa. I’d somehow managed to get a room in one of the hospital’s swankier wings. I was told this was the floor where VIPs used to spend their hospital visits before the construction of a newer building. My mom was en route with some bon-bons from a local bakery. It was afternoon coffee time, one of my sacred rituals, and my wife had gone downstairs to grab us some drinks. It was at that moment that the “weird blood” hematologist walked in, wearing his usual scrubs and cowboy boots. He didn’t waste time or mince words. I have to imagine that these conversations are never easy, even for folks who work in this line of business. He told me that one of his colleagues had taken a preliminary look at the marrow and found cancerous blasts.

The burning question had been answered with finality. It was cancer. I had cancer. Leukemia, specifically. The dry marrow pull from the previous day had revealed the horrible truth.

I called my wife on the phone, hyperventilating again, and put her on speaker so she could listen while the hematologist talked. She, of course, was freaking out downstairs, trying to navigate a coffee purchase, listening as I received the worst news in the world, and ultimately ditching the coffee to run back to the elevators. She must have sprinted because it felt like she got back to the room so quickly, and thank goodness because I had entered a dissociative state.

My brain just turned off for a while. The weight of the stress flicked off the lights, I guess. Noticing my relative catatonia, my wife took over and started asking the hematologist questions. They didn’t know what type of leukemia I had yet. That would take further testing. He wouldn’t be my main doctor because he was only brought in to diagnose my situation. Instead, I would get assigned to a hematology-oncology team. In the middle of all of this my mom rolled in, smiling, as if she were a cast member in a dark comedy, holding a gleaming white box of bon-bons. She saw the hematologist and everyone else’s countenance and quickly assessed that I had received some terrible news. Amid the silence and crestfallen faces, she could tell all the hope that it might not be something serious had foundered. It broke my heart to see her break down and cry, still clutching that box of bon-bons, sputtering that she brought some for everyone.

My brain woke up and I found myself asking the hematologist a question as he said his condolences and prepared to leave, “How should I deal with this?” It was the most eloquent question my brain could muster at the time. He fixed me with a look and said, “Plan to do well. People who plan to do well generally do well.” And with that, he left.

It is difficult to capture the feeling of a room that has just had a bomb dropped on it like that. I was thirty-nine years old, in peak physical condition. I’d never even been admitted to a hospital before. It was truly one of those moments that leaves a person wondering, “Is this real life? Is this really happening to me?” Feelings of anxiety, anger, despair, confusion, each wrestling for top billing in your head.

My dad took me aside as the rest of my family gathered themselves. I was a mess. He said he wasn’t sad, but angry at the situation, and he offered some words of wisdom. “Look,” and his hand guided my eyes toward my wife and mom, both of whom were struggling, too, “You need to show your wife and mother you’re going to fight this thing.” My dad tends to be a bit more patriarchal and old-school in his views than me. Men are to be unruffled, stoic, trending toward anger while bottling up sadness and burying it somewhere deep inside. Sometimes I reject his advice as old-fashioned boomer bullshit, but in this case he was right. I needed to get my head right, for my family’s sake, if not my own.

Before we could even catch our breath, a new gaggle of people entered my room. It was my new oncology team, I soon learned. There were hematologists, fellows, pharmacists, nutritionists, residents–it was as if the oncology Avengers had appeared. The main oncologist introduced himself and started telling me about my case. I had B-Cell Acute Lymphoblastic Leukemia. It’s the leukemia that mostly shows up in little kids. Pretty rare in adults. I also learned that my theory about the dry bone marrow pull was accurate. The cancer cells were packed in so tight that they were effectively squeezing out the liquid marrow. From the marrow they managed to scrape off the bone, 95% of the cells were cancerous. Ninety-five percent! My leukemia would’ve graduated magna cum laude.

They moved me into the oncology wing late that night. As someone from the hospital’s transport team pushed me along on another gurney, I kept thinking of a quote from the movie Shawshank Redemption. It was a line from Morgan Freeman’s character, Red, remembering his first night in jail: “When they put you in that cell, when those bars slam home, that’s when you know it’s for real. Old life blown away in the blink of an eye. Nothing left but all the time in the world to think about it.” I wasn’t in jail, but that’s how I felt. My old life was gone and I faced an uncertain road ahead.

So, that’s how I found out. The symptoms matured slowly and then exploded with the diagnosis, like a monocarpic plant waiting years to bloom and then dying after releasing its seeds.

I’m in remission now, living at home, and a sense of normalcy has returned. However, I am still receiving chemotherapy and will be for at least the next 2.5 years. The journey continues, one foot in front of the other, and every day with my family is a blessing.