Tragedy's Gift: Surviving Cancer (7 page)

Most of the time I was able to stay in the pediatrics ward of the hospital, which was a blessing for me. The nurses and caregivers there seemed to have more kindness and there was a sense of hope as compared to the few times I had to be in the adult cancer ward. I guess there is something that brings out compassion when a child suffers. The nurses used to fight over who would be my caregiver for the week that I would be there, partly because I didn’t require constant care. Unlike most of the other patients, I didn’t require spoon feedings, diapers, or the immediate care that a small child would. Although I felt terrible, I was able to be alone and still with my thoughts. At that time, I daydreamed a lot about becoming a singer and what it would be like to have an audience while I sang my favorite songs. It was daydreaming that helped me through my living nightmare. It was the hope of becoming a singer that kept me alive.

When I was in the middle of a week in the hospital being pumped full of toxic waste or lying on my parents couch trying not to throw up, I would lose my ability to fight. I would struggle to survive for five minutes, only to find that five more awaited me with even more pain and suffering. Visualizing my success as a singer was the only thing that kept me sane. I would lie there and let my mind transport me to a performance or road trip. I could close my eyes and imagine every aspect of being on stage singing to my fans or on the bus writing songs with my musician friends. I would envision fine details like what I would wear, what cities we would play, and names of the songs I would sing and to whom I would dedicate each one to. I became so engrossed in my dreams that before I knew it an hour might have passed. (In chemo time, an hour is equal to an eternity.) There were a few times that I could have just quit and followed the peacefulness of the light on the other side. However, I would always return knowing I couldn’t stop fighting yet. I could never fault anyone for following that warmth and peace that comes from the other side. I was so tempted, but it just wasn’t my time.

Kelly

Most of the new people I met while I was sick were nurses, doctors, hospital personnel or children who had cancer. My choices were either people who were going to cause me pain, see me naked and helpless, or those that had the same cloud of death hanging over them as I did. That was not such a great beginning to a lasting relationship. I was always hesitant to enter the room of a pediatric cancer patient when I came in for chemo, because I was afraid I would find an empty bed or someone new occupying my old friend’s space. I would feel sadness, not only because I lost a friend, but because there were no answers to questions like, “Why am I still alive and they’re not?” My odds were just as horrible as his or hers. Or, how much more loss of faith and hope can I take as each one of these children passes on? Still, I found myself becoming attached to another and another after that one. Unfortunately, there was never a shortage of sick children when I went to the hospital.

Sometimes I would go from room to room on the ward and sing for the kids and their families. I would sing,
Please Don’t Be Scared
, by Barry Manilow or other songs that helped me through rough times.

On one visit I met Kelly, she was a little girl who was suffering from brain cancer and had already outlived her doctor’s prognosis. I immediately felt a bond with her and her parents. Kelly was so strong and brave that despite her ravaged body she was still a bundle of hope and life.

I continued to keep in touch with her family and went to dinner at their home. I even had the privilege of singing the same song I sang for her a few months before at her school talent show. I gleaned incredible courage from Kelly and cherish the lessons she taught me about living every day fully and with hope.

A few months later we lost Kelly. I was devastated, and although her family asked me to sing at her funeral, I was too distressed to bring myself to do it. I sang at funerals before, but this was different and extremely personal. Kelly taught me things that will stay with me for the rest of my life. I think of her often and feel blessed to know I have an angel in my corner.

I visited her grave eight years later to ask for her forgiveness for not singing at her funeral. It was then and only then that my decision stopped eating at me.

Remission

After the second year of my therapy was over, it was time to take more tests to see if we had made any progress on shrinking the cancer. I will never forget the day I received the news that I was in remission. It was surprisingly underwhelming for me. My doctors came into the office, looked me and my parents in the eyes, and told us that the cancer was gone. My mother took a deep breath of relief, my dad hugged me joyfully, and I just stood there. I was in a state of disbelief about my remission combined with disbelief that I wasn’t going to die.

I had spent the last two years of my life preparing to die and fighting to live. When I got the news that I would live I was actually caught off guard.

What was I supposed to do now? I didn’t have the strength to do manual labor; I didn’t have the opportunity to go to college with my friends. I was taking anti-depressants that put crazy thoughts in my head. I felt that I had lost my appearance to my treatments. In some strange way, I was more defeated by living than by dying. I had to accept death as a way of getting ready for the fight. I had to be willing to emotionally and mentally give up my life in order to not be distracted when trying to save it. Learning to live again would prove to be just as hard or even harder.

So here I was with a second chance at life. I should be jumping with joy, shouting praises from the rooftops, on my knees thanking the Lord for sparing my life. Instead I had this sinking feeling deep inside my soul. After being childlike for so long, depending fully on others for my every need, spending all of my time in hospitals, recovering from surgery after surgery, poked and prodded by doctors and nurses and living in a sick bed, now I was expected to move forward. I couldn't remember what forward was. For the past two years of my life, time stood still while everyone else kept going. Everyone else had changed and made progress. The only thing that changed for me was that the cancer was gone. The pain was still there. My body was still weak. I couldn't remember what feeling normal was like. I would have to give a new definition to normal and I didn't like the things this new normal came with. I was still nauseous in the mornings; my leg was useless except to walk really slowly, my knee could not bend and it hurt a lot.

My doctors assured me that my hair would grow back thicker than it ever was. It wasn't long before I realized that would not be the case for me. It grew back thin and patchy and I looked like I had the mange. I don't know why I was so emotionally devastated by the thought of never having my hair back, but I think it was the idea of returning to normal that I wanted so badly after two years of being totally hairless.

My parents decided that we would take a family portrait to celebrate my survival and when we were lining up for the photographer he said to me, "You must be the oldest. You stand here.” Of course being second to the youngest I was devastated. I immediately went in search of every conceivable hair replacement system available, which was very limited at that time. I tried spray-on hair and a wig, neither of which were any less conspicuous than my own troubled locks.

I was consumed with the thought that every woman that I passed was wondering what was wrong with me and my pathetic hair.

Finally, after my self-confidence was at an all time low, I took a razor and shaved every hair from my head. I immediately felt better. I was used to being bald and deciding to stay that way. It was one way to solve the problem. I didn't have to worry if people were looking at me and wondering what was wrong with me. Now I was just a guy who
chose
to shave his head.

Several months after my last treatment, I was still in terrible pain. I was taking pain medication and depression medication, neither of which was helping very much. Then one day I found a lump on my right leg in exactly the same place the cancer had attacked my left leg. My heart sank. I went to the hospital for my post treatment appointment and was told that because my treatments had ended and I was now an adult, I couldn't see the pediatric doctors that I was comfortable with. I was sent to the adult oncology clinic for the first of my many check-ups. I was very concerned that the cancer had come back, so I immediately told the new doctor about the lump I had found. He looked me straight in the eye and said, "I think you are so worried about the cancer returning that you are feeling things that aren't there.” I couldn't believe my ears. I was exactly in the same situation as I was in high school with doctors telling me that my pain and concerns were all in my head. I left that clinic and decided that if I were to get sick again I would be able to tell and would go about finding a new doctor on my own. I never went back to that clinic again.

The next year was a challenge for my family and me. I started drinking to mask my pain, and hung around the house watching TV. I was also taking morphine every day for pain. I couldn’t get a grip on what I had been through. My family had made so much sacrifice. I had spent years dreaming of things that I thought would never come true, and now I felt I had no purpose. The anti-depressant drugs sure didn’t live up to their name. I was in a deep, dark tunnel and couldn’t see the light of day.

I still dreamed of music and performing, but since I didn’t need the dreams to get me through the fear of cancer or dying; they seemed to lose their luster. I never thought that singing would be my future. I didn’t really care that much anymore.

It’s Always Something

Early on in my treatments it was necessary have an IV port surgically placed under the skin on my left upper chest area.

Anyone who has spent an extended amount of time in the hospital knows first hand that veins and arteries can only withstand so much abuse before they just stop working.

This port worked like an outlet for the treatments or emergency drugs that were necessary for my hospital visits. The procedure to administer it was simple enough - a small incision and a line running directly into my artery. This procedure made it easy for nurses or doctors to “plug in” directly to my bloodstream without having to find a vein (which after months of treatments would have been impossible.)

The port proved to be very successful during my 20 months of treatment. I experienced less pain because of it.

Now that I was in remission, the doctors felt that I no longer needed the port and scheduled my visit to have it removed. The original incision would have to be reopened and the line gently pulled out of my artery.

As I lay motionless on the table, the line was being pulled out when it suddenly broke off and flipped into my heart. Now the situation was a bit different. If the line moved at all in any direction it could kill me. My simple procedure had turned into emergency, life-saving surgery. It was necessary for me to be awake during the entire thing so I just prepared myself for what was coming next.

I was assured that it would be quick and easy. By inserting a wire into my groin area and following the arterial path to my heart, the doctor could hook the tube and pull it free. Everything was going as planned until it was time to pull the tube out. After being inside my chest for so long, the tube actually grew attached to the artery and was stuck.

The plan was to pull very hard and release it. With every tug, the pain was becoming more and more intense. One last tug was all it took for the tube to loosen and flip even further into my heart. With that, monitor alarms, panic and expressions of fear took over the room. I was gripped with pain and felt myself slipping into unconsciousness. Just at that point, the doctor slapped me very hard across the face in an attempt to keep me awake. I was shocked, in pain and beyond fearful.