Steven Giallourakis: Osteosarcoma and Acute Myeloid Leukemia

Prior to getting cancer, I didn’t have any really serious problems growing up in surburbia. My head was always in the clouds, which means I wasn’t very grounded—I’m still not—and I’m ADHD. How’s that for a combo? Then, I get cancer, for the first time, when I’m 15.

Life during my sophomore year was pretty typical until that point—I was focused on my schoolwork and playing a few sports. When I started getting localized stiffness in my back around December 2006, I went to see this older doc. As you might expect, he ordered a chest x-ray, even though my chest didn’t hurt. He did an x-ray of my back—nothing there. I was sent home to get some physical therapy.

My back wasn’t getting any better. I was getting more tightness and nerve pain, plus I was waking up every night with my legs cramping on me. The pain got so bad, I started taking Vicodin.

Three months go by, it’s March now. I finally get scheduled for an MRI. I start the scan, but I couldn’t lay on the table longer than five minutes; my back was killing me. They only got three or four images and asked me to lie down to get more, but I couldn’t. Before I left the hospital, my dad called a family friend who’s a doc, who tells me to come to his office on the other side of town. He stayed late at his office to see me and I bring those few images with me.

After reviewing the images, he tells me, “Something’s there that shouldn’t be.” He sends me for an MRI, CT and PET scans first thing the next morning. I don’t remember much from that day because they drugged me up so I could get them. But, the tension in that room was like nothing I had ever felt before. Shit hit the fan. Nurses kept telling me that they had never seen somebody get pushed through the hospital that fast.

I had a softball-sized tumor growing out of my fourth lumbar, plus 40-60 nodules in my lungs that ranged from two to six millimeters in diameter. My parents didn’t want to tell me until the summer that I had stage 4A osteosarcoma and my chance of survival was less than 15%.

I did 10 weeks of chemotherapy and when I was done with that, the doc took out the tumor in my back. It shrunk from softball to golf ball size and was 100% dead. They also look out my fourth lumbar and inserted a titanium cage between my L3 and L5 vertebrae. I got out of the hospital on my sixteenth birthday.

I healed at home for eight weeks, which was nice, and then started up follow-up radiation and chemotherapy. The radiation was only a little fatiguing, but the full cocktail of chemo was rough.

I was done with treatment in January 2007 and was in remission until the summer of 2008 after I graduated from high school.

I relapsed when they found a five-millimeter bone nodule growing in my lung. My oncologist put me on MPPE to combat it, and they did blood draws twice a week to monitor my progress. It’s a good thing they did that because they saw leukemia develop in my blood. When they did a bone marrow biopsy in November 2008, I had AML (acute myeloid leukemia) in 60% of the marrow. It turns out that the AML was a secondary side effect from my first treatment.

I had really bad back pain again. Because of the radiation, the bone fusion didn’t heal properly, which snapped the titanium rod in my back in half. They went in and repaired my spine and it’s fine now.

More chemo for the second cancer, then a bone marrow transplant (BMT). We found two exact matches for my bone marrow donor, which doesn’t normally happen, so I had my pick. Fortunately, the BMT worked, but it presented a whole bunch of side effects.

First, there was a urinary tract infection, which felt like I was pissing diamonds. Second, I had my first foray with GVHD (graft vs. host disease) when my face swelled up two or three times its normal size; my vocal cords were being pushed on so much that I started talking like Don Corleone. None of the docs knew what it was or what to do at first. It turns out my immune cells attacked my salivary glands and they inflamed.

There were a whole host of other issues from GVHD—rashes for a year and a half, parts of my body cramping in funky positions, and bad neuropathy. I had ketamine infusions and took some pretty serious prescription meds and marijuana to help with it. I’m pretty much always going to feel achy, but I feel better if I’m moving and eating better.

It’s also taken some serious mental power, but I’ve been off the meds for seven months. I can actually think more clearly now!

The support I got during treatment was amazing. My whole family was great. During the first cancer, my mom and my brother Phil were pillars; during the second one, my dad and brother Nick were. Tons of my or my brother’s friends came up to visit. Sometimes, there would be days when 20 people would show up and I’d have to be moved to a bigger room to accommodate them.

Coming out of cancer, you understand what and who’s important—or you learn what’s not important. It affected me a lot in high school and I started not to care because nothing else really compares to your own life in importance. As I got older and more time passed after my last treatment—now eight years—it became more of ‘how do I fit in the world?’

My fiancé Kim has had a big role in helping me with that. My dad and I had a conversation during a time when I was distant with her because of a friend’s passing. He told me that even if I was having a shitty day, I still had to think of the other person. It made me less self-focused. She gives me the space to never feel like I’m being judged. I know I’m kind of a weird guy, but she tells me I’m not. She gives me the comfort level to express what I feel.

There are days when I’m feeling crappy and don’t want to get out of bed, but Kim encourages me to get up and move, which ends up helping me feel better. She pushes me.

We live in a house together and I do my art, which I love to do—painting, drawing, building things. I was a fabrics major before I had to withdraw from college and it feels great to get back to it. Even though it’s been eight years, I haven’t had that space just for me to be back in my element and I’m just getting my footing.

I’m also pushing myself to go from being pampered to not. For years, I was either in treatment or dealing with the side effects from it, which is a convenient and comfortable excuse if I messed up at school or forgot to do something. Having ADHD doesn’t help, either.

I got yelled at my boss the other day for something I messed up on. At first, it was demoralizing and embarrassing. But, it lit a fire under me to do better.

It coincides with a deep-rooted feeling that there’s more I can do to contribute in the world and not just slack off or hide behind cancer. I’ve been given insights about the way I want to live from cancer and I’ve felt this sense to figure out how those insights can be brought forth in the world.

Surviving cancer twice, I question my role in the world. My friends will never understand what I went through and neither will my family, even though they were there every step of the way. That’s not an uncommon thought for survivors to have, but right now, I’m trying to figure out what speaks to me about what I want to do and who I want to be.

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