Preface

First of all, I’d like to thank you for taking an interest in my story.  I really don’t know where to start, or even necessarily how to tell it. How could I possibly capture all of the emotions that went into my years and years of fighting cancer?

While I understand that there is an aspect of heroism to fighting and beating cancer, it isn’t like writing some fairy tale. I am so incredibly proud of what I’ve accomplished, and I am so grateful for those that have supported me along the way, but it isn’t pleasant to go back and relive the emotions that I felt when I was diagnosed, or when I had to tell my loved ones that I relapsed. And I don’t have a clue how I could expect myself to be able to articulate any of it well enough for you to understand.

Unless of course you are going through it too. And if you are, I am writing this for you. I am making this website because I want you to know that you are not alone. I have been there too, and while sometimes it may be difficult to talk about, I believe it is worth talking about it and sharing our experiences with others.

I hope that you can resonate with some of my story and find peace in the fact that I made it to the other side and you can too. You will.

This will be a difficult story to tell, and I’ll need to write it over time, but eventually I will finish. Consider this my own little journal that I’ll be coming back to from time to time to fill in the blanks.

I am so happy to have you with me while I tell my story. And I appreciate your patience while I take the time I need to tell it to its fullest extent.

I hope you enjoy.

The Diagnosis

It all started back in 2009. I was a freshman in high school with my sights set on playing college hockey. It was all I could think about at the time, and I was well on my way. I played defense, and I used to love playing aggressive at the blue line, because I was faster than I looked and knew I could catch anyone if they got by me. I mean the big guys are usually slow brutes right? But one game, and I remember this moment very clearly, someone got by me. Okay. No problem. I’ll catch him. Only this time, I didn’t. So I made a nice play where I dove, got the puck away from him without a penalty, and all was good. Except – where did that extra step go? Why did I slow down?

The next few days were like most other days; go to school, go to hockey practice, come home and have dinner, go to bed. I went to bed that Friday night and I was fine. I was totally fine – until I wasn’t. I can still remember the pain. It was shooting down my legs. This screaming pain in my lower back and my hips. Oh God, my hips were about to burst open. All I wanted was to get my dad, he’d know what to do. So I painstakingly swung my legs over the side of the bed, stood up, and before I knew it I was on the floor. My legs gave out from underneath me I was lying on the floor. It took every ounce of energy I had to reach up to my nightstand, grab my cell phone, and call my dad who was sleeping downstairs. He came up, got me some Advil, and I managed to make it through the night. I didn’t get out of bed. It was, and still is to this day, the worst pain I can imagine.

We went to my primary care physician the next day, got all of the routine tests. No red flags. Nothing. Maybe I tweaked a muscle during my hockey game. Yeah! That’s probably why I couldn’t chase down that other player like usual too. And surely that pain wasn’t as bad as I remembered, I just needed a few days to rest that’s all. Things are good to go now.

Until a couple of weekends later and more hockey games full of frustration. Why the hell was I so slow lately? Why are my hips flaring up every time I go out into a sprint? Why are my legs killing me? And then I woke up in the middle of the night, once again. The pain was back.

I still remember my dad practically carrying me outside and helping me into our pool. It had not been warm enough out for long enough for it to heat up the water yet, so instead it numbed the pain just enough for some relief.

This time, we went back to the doctor and asked for the works. I got an MRI, more bloodwork, X-rays, you name it. At first the doctor mentioned that because there was nothing to be found in the tests, then perhaps it was due to me growing so quickly. I was, after all, a 15 year old kid. But we just didn’t buy that. Kids didn’t wake up in the night screaming in pain from growing too quickly.

Then I had a doctor tell me that it seemed like slipped disk, or maybe a cracked vertebrae or something. It made sense, crazy lower back pain shooting down my legs. It made sense that it would flare up if I moved it funny. It all made sense because I wanted it to make sense. I wanted to know what was going on and I wanted it to be manageable. This would mean that, okay, it was a few months off from hockey and some rehab. I could do that, even though it seemed like the end of the world to think about. So I started going to physical therapy. It was okay, except the heat and stim machine hurt bad. Did that mean it was working? (I’ll tell you now that no, that does not mean it is working). But things were going alright, and I had a plan of action.

Until…

You guessed it. It happened again. Coincidentally, on a Friday night again too. Not too long after the second painful episode, I couldn’t get out of bed. In fact, this time, I actually had to go up on my dads back and have him carry me to the bathroom. But I did NOT want to go to the hospital. Because the hospital is where you go to get bad news, right?

Well, this time the pain did not go away. And the deal that I made with my parents was that, if this pain didn’t subside by Monday, I would go to the hospital. Well, great, here I am in agony on the bed, not able to find a position that wasn’t excruciating, and I was not able to get in a car and drive down all the bumpy roads to get to the hospital. So we had to call an ambulance.

The paramedics came into our house, put me in a  portable chair thing, and carried me to the ambulance.

After about 10 days of getting every test under the sun and about a million different types of doctors later, on July 17th, 2009, I found that I did not actually have a slipped disk. I found out that I would not be playing hockey any time soon. I found out that my entire life was about to change and that I was about to go through Hell. I found out that I was diagnosed with cancer.

The official diagnosis was Acute Lymphoblastic Leukemia, Philadelphia Chromosome positive, also known as ALL Ph+.

The Treatment

I remember getting the news and being in shock. I didn’t totally understand what it meant. Since I was only 14 years old at the time, the doctors had pulled my dad into a different room to tell him. When he came in to give me the news, I remember the tears in his eyes. I remember his voice shaking. And I still remember my response: “okay, so what’s next?” I just didn’t understand the weight of what I was being told.

The mind has a funny way of protecting us from bad news. It seems to be able to block certain things out, and to let other things in at an acceptable rate.

That is probably why I don’t remember much of that first hospital stay. I do, however, remember that I got to get out and go home on my birthday, July 28th, for a few hours. I remember being so excited to get out of there and go back home.

Just getting inside my house, on the other hand, was a real struggle. My legs were so weak and atrophied from staying in bed for so long that I needed help walking to the front door. Everything felt different; the last time I was home I didn’t have cancer. Or at least I didn’t know I did. The last time I was home I was in pain, yeah, but I was still looking forward to the next chance I’d get to play hockey. Now I was just wondering how the hell I was going to make it up to my room on the second floor of the house.

I sat on the couch and started crying. I started crying because nothing was going to be the same. Nothing would be going back to the way it was, as much as I wanted to believe that it might. And I was crying because, as much as the few hours away from the hospital was supposed to help my mental state, all it did was make me dread going back. I felt so stuck. So trapped. So shattered inside. Even though my family was around me, I just felt alone. Like there was no escaping what was going to happen over the next few years.

One blessing at the time for me was that there was never a moment when my brain actually believed I might be facing death. I never truly believed that it would happen. The thought crossed my mind, sure, but I don’t ever remember thinking “this is it for me.” For some reason, my brain blocked that thought out and I am so grateful for it. I don’t think I could comprehend that. It might sound dark, but that’s the reality of cancer. It’s a thought that should never have to cross a child’s mind. But when the term “survival rate” starts getting thrown around, sometimes it’s inevitable.

So anyway, I went back into the hospital and finished my first round of treatment. Like I mentioned, I don’t remember too much of that first round, but I do remember losing my appetite, and losing a ton of weight.

And that’s the deal, right? That’s the fight. Cancer takes and takes and takes, until there’s nothing left. It starts with the appetite, and then works its way through to weight loss, and before you know it, it takes your energy away with it too. Your will to keep fighting. And upon reflection, I realize that was truly my battle. Making sure that I took more from cancer than it took from me. The self-awareness that I’ve learned, the love that I have in my heart, and the strong will that I possess were all developed during my fights with cancer. In the end, I took so much more from cancer than cancer took from me. But back to the story…

After going back to the hospital and finishing out that first full hospitalization, and losing 40 pounds in the couple of weeks there, I remember I got to come home for a few weeks. I was SO happy to be home. And for more than just a few hours this time.

It was still different, though. My legs still weren’t strong enough to walk very much. It was really strange to go from playing hockey every day to barely being able to make it to the bathroom on my own.

But luckily it was summertime and we had a pool at my childhood home. When I had the energy, I’d have help from one of my parents getting out there to the pool and I would do some aqua therapy. Just walking around in circles. Moving my arms around to feel the resistance of the water. Sometimes using a float for support while I did what I could to move my muscles. To this day I swear that the pool in our backyard gave me the ability to learn to walk again.

I remember after leaving my first hospitalization in a wheelchair, my goal was to eventually be able to walk back and forth from the car all the way into the hospital building, and vice versa. It didn’t happen my first time back to the hospital, or even the second. But eventually, I crushed that goal and made it all the way into the hospital on my own. Pretty soon I was even taking the stairs.

Accomplishing those little goals – things like walking a certain number of laps in the pool, walking from the garage to the hospital building – really kept me going. They kept me wanting to get back what I’d lost.

From then on, I was in the hospital for an average of one week out of every month. Sometimes two weeks, but generally closer to one. I would get every chemotherapy drug under the sun: Cytoxan, Methotrexate, Cytarabine – you name it, I probably had it.

And I’d start to learn which ones did what, too. For example, if I was going in for Methotrexate, I knew to plan for at least a week, usually more. My body just had trouble getting all of it out of my system for some reason, and I couldn’t leave until I had just a small trace of it left in my body. And when I’d go in for Cytoxan, it would always be a “pukey” stay, for lack of a better term. That one always made me nauseous.

Lucky for me, I was in remission the first time they checked because they were able to catch my cancer so early on. In fact, the doctors told me that by playing hockey so often, and noticing the flare-ups that I was having, it was caught as early as possible (hence why it didn’t show up in the original bloodwork).

Unfortunately for me, however, I still had two and a half years of chemo to go…

To be continued…