Cancerversary 2

“I don’t have leukemia, I’m just here to get some tests done” I replied to the nurse. He smiled, patted my arm and walked out the door.

“Are you sure?” I asked the doctor I had never met before. He had to be wrong.

“Am I gonna die?” I sobbed as my Mom held me on the hospital bed after the doctor left the room.

“Should I make a will?” I asked my parents later that night.

“I’ll have blueberry pancakes,” I told the hospital worker taking my breakfast order for the next morning.

“Will it hurt?” I asked the nurse as she handed me the little cup filled with my first dosage of chemo pills.

“You shouldn’t feel a thing,” she said.

She was right, I didn’t feel a thing. Not that night at least. I wasn’t capable of feeling on the night of March 8th, 2018, as I was shattered on the ground in a million pieces.

2 years and hundreds of pills later, I chuckle at the naivety of my last question. I knew cancer was horrible, but besides that, I had no idea what to expect. The best way to learn is by doing, I guess. What I’ve learned with cancer is that there is no way to expect. You think you’ve got it all figured out until you don’t. And you don’t think you have anything figured out but you actually do. Did that confuse you?… Good.

I remember being so excited to eat my blueberry pancakes the next morning. If you’ve ever been served food in a hospital you know it’s no gourmet spread. But those were some of the best pancakes I’ve ever had.

I remember being so happy when one of the nurses allowed me to shower for five minutes. Woo baby, I tried to scrub that shit outta me. Except I don’t think I had soap or shampoo, it was mostly just hot water. But it felt like water from heaven itself.

I remember being allowed to do laps around the 6th-floor hallways as long as a nurse was with me. While walking along the windows I asked the nurse how it was outside. She said it was overcast, windy, in the mid-40s, a typical March day in New Jersey. But, man, it sure looked like paradise to me.

I spent 5 days in the hospital, Thursday-Monday, while my white blood cell count came down from the stratosphere and the diagnosis was fully fleshed out. The prior Saturday I was out drinking with friends and stayed out till early in the morning, ya know, normal mid-twenties stuff. On Tuesday I went to get the MRI results I didn’t care about anymore, my knee didn’t hurt. Thursday morning I answered a phone call from a client, he wanted to put his whole account into Amazon. Later that night I was telling people I had cancer. And on Friday, I canceled plans to go out with friends, they came to visit me instead.

During my short stay, doctors told me things like, “you just take a pill”, “you’re actually pretty lucky”, “good cancer” and “in 6 months it’ll be like nothing ever happened”. They made it seem like I would be taking a multivitamin. At least that’s how I took it. Every other time I’ve been sick, it’s sucked for a few days but I took medicine and got over it. So it was nice to hear that this would be no different. Or so I thought.

From an oncological perspective, I’m blessed. But this treatment is certainly no multivitamin. I know that some people with CML have no side effects from the treatment whatsoever. Same diagnosis. Same treatment. Yet wildly different outcomes. How’s that for a headscratcher?

I guess when oncologists say “you’re going to be okay” it just means you’re not going to die soon. As it turns out, being okay and not dying are two completely different things! Who knew?!

Getting discharged from the hospital was like being dropped on Jupiter. Where did all the oxygen go? I was breathing hydrogen now. I stepped onto the foreign pavement with thousands of invisible gnats swarming my head. “These must be indigenous.” My new atmosphere tasted like metal.

We drove a stretch of road I’d been down a million times and yet nothing looked familiar. We had to stop at the pharmacy to pick up my new medications. For some reason, I decided to go in with my Mom, even though she insisted I stay in the car. The store was mobbed. The first person I saw was a family friend waiting on the check-out line. He knew what had happened. I didn’t hear what he said to me, but I smiled and thanked him. Everyone was cheering for me on this new planet.

I got to the pharmacy window and sat on the little bench while my Mom talked with the pharmacist. “He has leukemia”… “Oh…. okay”. I half-heard this exchange because I was too busy trying to make eye contact with each shopper that passed by. “Hi, I have cancer, please pat me on the back, it’s your custom here, right?” I would have said. Instead, I was met with scowls, diverted eyes, and blank expressions as no one seemed to notice. Ya know, normal stuff, everyone just going about their day. It was a rainy Monday in March. Nothing extraordinary about it.

The disconnect was staggering. It was like I had this huge juicy secret and wanted to tell everyone. I was bursting with it. And yet everyone just kept moving. There were so many people in the store, it was overwhelming. Someone coughed nearby. I started to get dizzy and lightheaded. Suddenly I was on the verge of vomiting. My skin was already ghost-white, so I guess it turned clear. I asked my Mom for the car keys and got out of there. I regrouped back out in the car. “Is this what it’s gonna be like?”

I stepped into my house, it felt like a stranger had been living there. “Is this what my life smells like?” I put my backpack down in my room and absolutely lost it. The dam finally broke. I’ve never cried like that before in my life. Then I fell asleep in this stranger’s bed and slept as I’ve never slept before. “What. just. happened?”

If I could go back to March 8th, 2018 and offer advice I would tell myself to be weak. I’d tell myself that my definition of strength was misguided and damaging my soul. Strength is not holding back tears, it’s having the courage to let them flow. Strength is not about repressing your fear, it’s admitting it. Strength is not always about keeping it together, it’s sometimes about letting it fall apart. Feel it all, man, be pissed off, be crushed, be overwhelmed, IT IS OKAY! Slow down. Give yourself time to process. Forgive yourself. What I really needed to hear, and still do, is “I love you when you’re weak. I love you when you’re down. I love you when you’re scared”.

Strength is the default when it comes to living with cancer. That’s just the nature of it. I’m only speaking for myself here because each person’s cancer situation is different. But what really lifts me up, ironically, is not trying, or needing, to lift me up. I look to other people for a break from being strong. So when that need to be strong gets reflected back at me, it feels like telling a fish to swim or a bird to fly.

I’m not criticizing anybody here, so please don’t take it that way. It’s impossible to find the “right words” to say in real-time when dealing with these situations. All well wishes are amazing and I’m grateful every single time someone reaches out to show support, regardless of what is said. I know the intention is there, and that means so much. But maybe instead of telling people to “stay strong” offer something like “I can be strong if you want to be weak”.

I’ve heard a lot of people say things like “I don’t know how you do it” or “I wouldn’t know how to handle all that”. Well, I only do it because I have to. I handle it this way because I need to. This is how I survive. You would too if you had to. Necessity forces capability. I didn’t know how to handle it. This isn’t some plan I drew up ahead of time. I’m just making it up as I go. Plato’s words ring true for the inner life as well, “Necessity is the Mother of invention”.

It’s often said that hardship of any kind gives you a new outlook on life. I think it’s kind of misleading when it’s said like this. It’s not as if they gave me fresh perspective lenses with that first round of chemo pills. “Just wear these and all the pain and suffering will be blurred out while your appreciation for life will be apparent in astounding color!” Nah, that’s not what this is. Hardship is hard. Hardship sucks. You suffer. You miss out on a lot. You have to sacrifice. You’re exhausted. You’re in pain. You wish it wasn’t so, but it is.

I didn’t get presented with a new perspective in the hospital two years ago. I got presented with a tangible threat to my very existence. Hardship doesn’t give, it takes away. It forces you to do things like pay attention to how you’re actually feeling, appreciate the small stuff and live for now. Those things are all possible without hardship. But the threat of them being taken away is what makes them so much sweeter. This new outlook isn’t just given to you, it is earned through the struggle.

The basic human need for safety was taken from me that day two years ago. Cancer robbed me of so much. And hasn’t given me a damn thing. It didn’t give me the immense appreciation I now have for my body. It didn’t hand me more meaningful relationships with my family and friends. It didn’t offer me more gratitude for everyday life. I created those things. I’ve worked for them every single day since I got diagnosed and will continue to do so. CML didn’t give me this new life, I’ve made it for myself.

A week or two after my diagnosis I was reading a book on the couch when a sunbeam slanted in across my face. The sun took control. It was an unseasonably warm March day. One of those mood-boosting, shoot hoops in the driveway for hours type days. The sun pulled me off the couch and out the door. My feet led me down the driveway. As I got to the street I started to slowly jog and eventually started to run. A joy like no other erupted inside me. For a brief moment, I was the warmth of the sun, I was the freedom of the wind, I was the vastness of the blue sky above. I was both the newborn taking his first steps and the proud parent watching it happen. I went about 50 yards, stopped at the stop sign and beamed up at the sky. At that moment I was reminded how good it felt to still be me!

**Thank You’s**

• My family has always been very close. But this experience has brought us even closer, which I didn’t think was possible. My parents have been with me every step of the way. We’ve gone through it side by side. I lean on them and they hold me up. I’m so lucky to have you both. Love you, Mom and Dad!!
• My brothers, Brendan and Tim, have picked up so many of my pieces. We do everything together. That unity is a nourishing force in my life that I cherished a lot before but especially these last 2 years.
• To my friends that have stepped up and taken this on with me, I thank God for you every day. I know this isn’t what you signed up for, ha! But you being there for me under difficult circumstances is something I will never forget.
• To the doctors, researchers, and nurses that brought me back to health, you don’t get enough credit for what you do. I have developed a deep appreciation for the healthcare profession as a whole and am grateful to have been under your care.
• To anyone who has made it this far, or has read any of my posts before, thank you so much for taking the time out of your day to listen to what I have to say. It’s a lot to understand but you trying means everything.