I was 15 when I first noticed the tightness in my right leg. It was mild at first, but as the winter of 2005-06 progressed, the mild tightness grew into something worse. I began to wake every night because my leg was so tight. After weeks of this, my parents decided it was time to do something. We went to our family pediatrician, Dr. Muniak. She suggested that I go to an orthopedic surgeon.
After my first visit to the orthopedic surgeon, he recommended physical therapy. The physical therapy helped with the acute tightness. Yet as January turned into February, that tightness turned into a great pain. The simplest of things required herculean effort.
It was early March 2006. I couldn’t get off the couch anymore without help. What was once a mild tightness in my right leg had now become reality bending pain. My lower back felt like it was being split in two. My leg was exploding with electrical pain. The doctor ordered an MRI for me.
It was Tuesday, March 7. As I lay there on that hard MRI bed, I thought to myself, “There is no way I am going to be able to lie for 45 minutes and not move.” The bed began to slide, my world shrank around me. It was hot and tight. I remember thinking, “This is what it must feel like to be buried alive.” As the machine began to spin up, it grew loud and hot in the tube. Within moments of being in the machine, my back began to scream out. I tried to hold still but I couldn’t. Suddenly, I heard a voice, “Steven, we need to try and hold still.” I replied with tears in my eyes, “I’m trying to.” I gritted my teeth and closed my eyes. The machine spun ever louder, and my pain grew ever more intense. Finally, I couldn’t take anymore. I squeezed that little red button as hard as I could and with tears in my eyes I screamed, “Get me out of here, please get me out of here!” I was done. There was nothing they could say would get me back into that machine.
My mother and I sat in her car after we left the MRI building. It was roughly 5-ish. My mom called my dad to ask him what to do. I was sitting there in the passenger seat in agony. I couldn’t lie down for the MRI. I’m sure they were feeling lost. My dad said he would call Dr. Furey, a good family friend. My mom and dad hung up the phone. We sat there together. I do not know if we talked or listened to music. I do recall it feeling like an eternity had passed. Finally, my dad called us back. He told us to go to Dr. Furey’s office. We needed to bring whatever images were taken during my MRI. They were only able to get a few. We had no idea if it would be enough information.
We arrived sometime after business hours had concluded. It was just him and his nurse. His nurse brought us into a waiting room. We gave them what images we had, and they left the room. I lay there on the ground in that dimly lit waiting room. My mother and I were both exhausted. Soon Dr. Furey came back into the room. He put the images up on the viewing board. All I recall him saying is, “We only have a few images here, but there is something there that shouldn’t be there.” My heart sank but not as much as my mom’s did. I didn’t grasp what he was saying, but I think she did. His nurse came back into the room. They both proceeded to tell us that we needed to be downtown at University Hospital’s Main Campus at 5:30 am the next day. I was going to be getting an MRI, CT scan, and PET scan. I was going to be sedated for all of this.
The day was Wednesday, March 8, 2006. We arrived at the hospital some time around 5 a.m. We were all tired and scared. I remember the room being dark. Beyond that I do not recall much. I was heavily drugged, and for good reason. This, however, makes that morning quite a blur. What I do recall are fragments of that morning. Like shards of glass dancing before my eyes, I can only peer back to specific moments. My most vivid memory is of that night. I was admitted to Rainbow Babies and Children’s Hospital at University Hospital. I was lying in the hospital bed and my mother was lying to my left on the pullout couch. It was blue with fake leather that only seems to appear on hospital furniture. The lights were dim.
I asked her, “Do I have cancer?”
There was a pause. She replied, “Yes.”
My mom began to cry.
I began to cry.
I was so drugged up that I didn’t recall they had told me that I had a softball size tumor in my back. That tumor was now wrapped around my spine. I also forgot that they had told me that along with the tumor in my back there were also over 40 very small tumors in my lungs (nodules).
The next morning, before all the doctors came into my room, I met two people. The first was Barb Humrick, my nurse practitioner. The second was Dr. Sarah Alexander, my Pediatric Oncologist.
We still didn’t know what type of cancer it was, though. I began radiation the next day. Yet what I recall most of this day was what happened that night. As school would have been letting out, a stream of people started to show up at my room. I had a good number of friends growing up but the amount of people that came to see me absolutely blew me away. Kids from school that I barely talked to were now in my hospital room. They didn’t want anything from me; they just wanted me to know that I was loved. The fact that there were people pulling for me that I didn’t even know really did help. I felt truly loved and cared for. This didn’t even consider my family that was coming to see me. Everyone was there. I never felt more loved than when I was being diagnosed with cancer. When a larger room opened up they moved me into it because so many people were coming to see me.
Friday came around, and the joy from that evening was gone. I was scheduled to have surgery to place a central line in my chest (mediport). This would allow medication to flow directly to my heart and avoid damage to my veins. While I was under anesthesia, Dr. Furey and his team were going to biopsy the tumor.
A few hours after the biopsy was taken, we had a preliminary result: Ewing’s Sarcoma. It was at this moment that I truly recall my first interaction with Barb Humrick and Dr. Alexander. Dr. Alexander was going to be in charge of my treatment plan. Barb was everything else. These two were incredible. I cannot express how much I love them for everything they did.
As the day went on, more and more friends came to see me. We laughed, we cried, but soon things needed to stop. My nurse came into the room and told me that Dr. Alexander was coming up to see me. She told us that the preliminary results were wrong and that I had osteosarcoma. Specifically, metastatic osteosarcoma. She told us that I had to start chemotherapy that night. I had no idea what this would entail, but I knew that it was going to suck. I just didn’t realize how much I would suffer.
The plan was to undergo ten weeks of chemotherapy to shrink the main tumor. Then remove what was left of the tumor. This would also require the surgeons to remove parts of my spine and me to learn to walk again. If I survived the surgery, I would rest for eight weeks. After those eight weeks, I would undergo five weeks of radiation in conjunction with more chemotherapy. The chemotherapy would last for an additional six months.
When it was all said and done, I had endured over 30 chemotherapy infusions from five different chemotherapies. I had maxed out my lifetime limit on two of those drugs and was found deathly allergic to another. I had endured 25 treatments of radiation and numerous surgeries. Yet I survived.
It has been nearly 17 years since I was first diagnosed. A lot has happened. This cancer led me to relapse once and to suffer two other cancer diagnoses. Cancer has continued to try to kill me. It has broken me continuously, yet I come back stronger. This is all because of a tremendous amount of love and an even larger amount of luck.
Thank you to all my family and friends. I love you all!