A Survivor’s Story
My name is Matthew Zachary and I am 28 years old. When I was 21, I was diagnosed with an extremely rare pediatric brain tumor (medulloblastoma). I have since beaten the odds, surviving surgery, aggressive radiation and a seven-year recovery.
In the Beginning
I started playing piano when I was 11 and professionally by age 16. Music had become the very fabric of my soul. I attended college at Binghamton University in the fall of 1992 as a Mechanical Engineering major. Needless to say, after three weeks of a 7:00am organic chemistry class, I promptly switched to Music. It all started in the summer of 1995. I had just turned 21, completed my junior year of college and took a temp job as a computer tech for Dean Witter on the 68th floor of Tower One of the World Trade Center in New York City.
At first I thought the onset of strange headaches was brought about by the large periods of time I spent while working at such magnificent altitude. I had experienced headaches before, migraines to be specific, but these felt different. I wasn’t sure how – they just were. The summer ended and I returned to school. In addition to these horribly strange headaches, the primary symptom I began to experience was the loss of motor coordination in my left hand, my dominant hand. This affected my ability to play piano, to write and to type. As a college Senior majoring in music, this was not a good thing.
Robitussin – for a brain tumor?
Symptoms degenerated to the point where I began to collapse at random, slur my speech and experience headaches worthy of the Nobel Prize for pain. Doctors on campus gave me Robitussin (for my brain tumor). It didn’t help. I wonder why.
I returned home after Fall semester only to meet with a Neurologist who promptly referred me for an MRI. They found a large mass – the size of a golf ball – growing in my cerebellum. My question wasn’t “Am I going to live?” It was “Am I going to play the piano again?”. My caregivers did not know if these degenerative symptoms would disappear after surgery. I was told that I would be lucky to walk, let alone play, after the procedure – if it was successful at all. (Which it was, obviously.)
Indeed, I did have to re-learn how to walk, eat, drink, swallow and speak after my surgery. Those all came back within 6 months to 1 year. However, the day I returned home from surgery, I sat down at my piano to see if I could play. The defining moment of my life had come upon me…I could play. But (there’s always a “but”) it wasn’t all glamour and glitz. Since my left hand hadn’t “worked” properly for 6 months prior to diagnosis, 10 years of piano training had essentially been wiped out. Motivated yet disenfranchised, I began the slow and arduous process of retraining my left hand. This took five years.
It’s All Up to Me
Due to the nature of my tumor, the leading oncology physicians in the NYC-Metro area could not agree on a conclusive prognosis nor recommended post-operative treatment protocol. This did not make things any easier. After much soul searching, personal and professional researching and several consultations, second, third and fourth opinions, the decision on my treatment ultimately came down to me.
I decided on 33 treatments of high-dose (5940cg) craniospinal (head, neck and spine) radiation treatments and NO chemotherapy. While my CSF (cerebrospinal fluid) and bone marrow were clean and did not indicate even the slightest hint of metastasis, the choice to do craniospinal was more palliative than anything else.
I experienced several very severe side effects from treatment. If you can name it, I probably had it. My quality of life fell into the toilet, literally and figuratively. My newfound ability to play piano again was instantly compromised. All I wanted to do was play but all my body wanted to do was sleep. It was agonizing torture – a quality of life I would not wish on my worst enemy.
I was sleeping more than 20 hours per day. During the remaining 4 hours I was either en route to the hospital, getting treatment, getting medical exams, going home from the hospital, regurgitating uncontrollably or trying to down some broth. I had lost the ability to eat solid food. Recovering from this plagued me for over 3 years. Even today, I suffer long term side effects involving a swallow disorder and saliva deficiency.
Due to this extreme fatigue from post-operative treatment (what I like to refer to as “the really fun times”), I was disempowered and needed to look deep within myself for a way to manage these life-altering circumstances. I made the decision not to let cancer destroy my art. I forced myself to sit down at that piano and play every single day – even for just 10 minutes. Couple that with the fact that I was also retraining my left hand from scratch, and you have a bird with wings too small to fly.
Since neither my mind nor my body were in the right place to create, compose, and express, my only recourse was to “scribble” down my ideas (motives, themes, melodies) on staff paper for the next time, not actually knowing if there would be a next time.
My identity – who I was – had been stripped away from me. The only way I could identify with myself was by my ability to create and by how much “scribbling” I did that day. Music was my inspiration, my stability, my hope, and the only gauge for my quality of life during those intensely debilitating days of torture. Those “scribblings” were my solace, my inner peace, and my miracle.
This was surprisingly empowering. I was able to channel whatever energies I had at the time toward my creativity. Indeed I did play piano every day during treatment, all the while composing many of the songs that wound up on the “Scribblings” album. Being able to compose music gave me an identity and a purpose — which continues to this day. It gave me the strength to keep going and helped save my quality of life. I have since discovered the power of music for others as well.
I was diagnosed in between the Fall 1995 and Winter 1996 semesters of my Senior year at college. My surgery and treatments prevented me from returning to school to complete my final semester – at least that’s what everyone thought.
Against all advice, I actually did go back to college in April while receiving treatment and graduated on time with honors with a degree combining music, musical theater, sociology and computer science.
Treatments ended. College was over. I now had the unanticipated task of living out the rest of my life. It took me 2-3 years to fully recover physically, emotionally, and psychosocially. I began a career as a computer tech at an ad agency in Manhattan. I then started up a computer-consulting agency and began to build an extensive client base. I was still playing piano but the “day job” was getting in the way. I needed something…
Scribblings Album Cover
My intention in producing “Scribblings” in 1999 was twofold – I wanted to legitimize my identity as a musician with a commercial record album, and I wanted to be able to offer it as tangible hope to the cancer survivors and hospital workers with whom I had build friendships. The rest is history.
By late 2000, my left hand had returned to a skill level that I was comfortable with. I was then ready to take my music to the next level and produce “Every Step of the Way”, which features a very different texture of writing. With my left hand back, my intention was to showcase it through these new compositions, many of which were directly influenced from the unused “scribblings” from 1996.
In June of 2001, I quit my career to pursue my dream – and have not looked back yet. I have decided to dedicate my life to the pursuit of patient empowerment, cancer advocacy, physician/patient relationships and music as a spiritually motivating conduit for health and well being. I founded Matthew Zachary Music to be a vehicle by which I could fulfill that vision.
Matt at piano
Matt and Jessica
These pictures were taken in Oct. 2002, at “Journeys, the 1st. Annual Celebration of Living”, benefiting Melissa’s Living Legacy Foundation and teens living with cancer. That’s Jessica on the right.
See – we brain tumor folks look pretty normal!
I wish to help educate and inspire people who face adversity in their lives. The music I compose stems from my experiences both surviving and recovering from my illness. It is my hope that it can touch the lives of those who may be seeking comfort and hope as they face their life’s challenges. I believe in the innate healing power of music for it truly helped me heal mentally, spiritually and emotionally.
Everything that has happened to me, whether I liked it or not, became a part of my life; and I chose to live my life and to be the absolute best I could be every step of the way.
My music is dedicated to the thousands of people less fortunate than myself who continue to fight for survival while keeping hope alive in both mind, body & spirit, never abandoning their faith. One must maintain a strong spirit, no matter how difficult. With some visceral determination and little bit of hope, you will find that you can surprise yourself when you least expect it. Miracles do happen. My being here is one of them.Share