By Matthew Zachery
February 24, 2009
The following article was sent to us by Matthew Zachary, an 11-year young adult cancer survivor and the Founder/Executive Director of Steps for Living. Matthew has suddenly gone deaf in his left ear. The condition is called Sudden Sensory Neural Hearing Loss, which is a direct result from the cancer treatments he received 11 years ago.
Matthew is a true survivor who believes that this has only reinvigorated him to “stay the course and continue to advocate on behalf of the more than 500,000 [US] young adults living with, through and beyond cancer each and every year.”
Matthew wants to “stress the importance of recognizing that remission is not a cure and that public awareness and adequate funding for adolescent and young adult cancer survivorship programming is tantamount to that of cancer research.”
Steps For Living is a progressive nonprofit communications, support and social advocacy agent for adolescents and young adults with cancer. Their mission is to increase quality of life for this population by connecting them with trusted and credible cancer survivorship tools, including social networks, peer support programs and psychosocial resources.
THE COST OF LIVING: NO CURE FOR CANCER
Life is about choice.
Remission is not a cure.
Survivorship is all the rage.
Why we fight:
I remember the first time I sat down at a piano and asked my mother, ‘Where do you put your fingers?” She showed me a simple five-note scale with both hands and, almost instinctively, I repeated with precision. The next words out of her mouth were, “You’re getting lessons.” At that point, I know music would always somehow be a part of my life.
I was 11 years old. It was 1985.
It wasn’t until my third year of college until I realized that a true career in music was possible. My dreams of composing symphonies for film were drawing nearer with each semester. A trip to USC Film School in the spring of 1995 sealed the deal for me and I knew where my life was going, an energized and passionate neophyte with dreams bigger than himself.
Someone once told me that if you want to smash your goals on the rocky shoals of intention, then simply tell God your plans. In retrospect, now 11 years later, that seems a double-edged sword. Truth to power.
Summer 1995: I was enjoying a paid summer internship for Dean Witter on the 68th floor of Tower One of the World Trade Center when I first began to notice that my left hand was behaving strangely. (Growing up in New York City had many advantages but the opportunity to work for three months at this facility was a life-changing event for me, then 21.) It wasn’t until I got back to school and begin playing piano again (upwards of 60 hours per week), that I noticed a major difference.
The fall of 1995 was fraught with uncertainty as my left hand slowly lost it’s dexterity and eventually failed all fine motor coordination tests, rendering this aspiring pianist (and lefty) unable to perform, write or type. A diagnosis of brain cancer in December would make strange sense of the madness and seal the deal that – perhaps only for now – my dreams must be put on hold.
I could spend paragraphs upon paragraphs about what it felt like to be a young adult with cancer whose invincible life came tumbling down in an instant. Two words, however, can sum up the experience: isolation and resilience. No fear. Perhaps blind ignorance and deft denial served their purpose but, in the end, how dare this get in the way of my dreams? I have a life to live and damned if I let this stop me. The pianist who couldn’t play and the college senior who couldn’t graduate was determined to see through this uncertain future.
“When am I going to die,” I asked the doctor.
Or is this death?
There is a price to pay for surviving anything traumatic, medical or otherwise. Few, if any escape unscathed. That seems to be human nature. So, how do we cope in the aftermath when subtle – or not so subtle – reminders consistently influence and compromise closure, or the illusion thereof? For me, I had the mixed blessing benefit of being told that my life in the wake of my cancer diagnosis may not be a bed of roses given the intensity of the post operative treatments barraged upon my body for 33 torturous sessions of excessively high dose craniospinal radiation (5940cg).
Right off the bat, upon completion of treatment, I had lost a remarkable 110lbs in less than three months. After throwing up 5-10 times per day nonstop for that entire period, I had eroded the lining of my esophageous (antiemitics were of modest help), inducing a permanent physiological and neurological dysphagia (swallow disorder). My saliva glands were decimated (and, to date, only operate at 70%) leaving me with a chronic xerostomia (dry mouth) I was left virtually infertile, my testicles and sperm production was ceasing to function correctly. My brain, eyes, ears, glands, spine, heart, lungs, liver, kidneys and primary chest organs now all faced a potentially compromised future of chronic illness, physiological deficit and, even more scarily, a near certain and unpreventable secondary recurrence of cancer as a direct result of my treatment within 10 to 20 years.
Needless to say, I may have survived, but only in the loosest sense of the word for the “therapy” prescribed to save my life, nearly ended it back then and may be the causal eventuality of a life cut short before it’s natural time.
I presently live. That’s what I do. As best I can.
And I live a “better than the alternative” lifestyle. Meaning, I’d rather be here with these issues than dead and useless to the world.
Good came from this.
Three years after treatment, in late-1998, I finally got busy living and moved on. One of the happiest days was when I released my first solo piano album – Scribblings, songs from which had been composed in my head for almost three years post treatment as it took that long for my left hand to regain it’s strength and dexterity at the keyboard. Balance in my life seemed to have been restored. I may never be the Hollywood composer but at least I still had my music – a peaceful reconciliation for a 25-year-old. A second album followed two years later and a third was composed but never released.
And so, in addition to the Vaudevillian cornucopia of maladies, chronic symptoms and physiological setbacks that I had learned to live with, they were but only the beginning, nee a staging ground for the true tests that were yet to come.
In 2003, my fertility returned however I will forever experience extremely low counts and below average motility. I must continue to spend $400/year in sperm banking in the event my wife and I require a reproductive specialist for fertility assistance.
In 2004, it was an intermittent arrhythmia.
In 2005, it was ocular and periodontal shingles along with the chronic onset of Irritable Bowel Syndrome, Colitis and Gastritis.
In early 2006, I began to experience catastrophic depression and mania. I was diagnosed bi-polar and it was the general consensus of my providers that this was yet another latent influence on brain chemistry from my treatments.
In late 2006, I had a testicular cancer scare as a result of a new circulatory imbalance.
On March 18th, 2007, within a span of three days, I lost all hearing in my left ear. The pianist who once lost the use of his left hand is now unilaterally deaf. The diagnosis? “Sudden Sensory-Neural Hearing Loss”, a rare condition that my oncologist confirmed with me is, without a doubt, 100 per cent connected as a long-term side effect of my postoperative brain radiation. Essentially, my cochlea stopped working. Given it’s location to be within millimeters of my tumor and the subsequent stereotactic gamma rays which beamed through my brain, I suppose it was only a matter of time before it gave out.
I can only imagine what may lie ahead but it is with utmost certainty that I will continue to be able to say, “I am still here.”
Is this what it means to be a cancer survivor?
And yet, more good came from this.
A decade of experience and reflection and dissatisfaction yielded the birth of Steps For Living, a nonprofit support, communications and social advocacy agent for young adults with cancer whose goal was to use music and the arts to create lasting change in how the public relates to cancer. I founded this organization because I believe that this orphaned age group within the cancer continuum stands the most to lose without proper diagnosis, adequate targeted treatment, access to quality care, long-term follow-up programs and social networking support as they have the rest of their lives to reconcile the trauma, move forward and confront whatever ramifications (physical, spiritual, financial, emotional, practical) that may foster in that wake.
In our small, niche world, we’re a hit. And we’re making a difference by fostering connections, building communities and reversing the feelings of isolation faced by so many.
The past eleven years have played out for me as an orchestrated symphony of odd medical issues and rare, unique chronic health conditions all baffling physicians, defying conventional wisdom and wreaking havoc on my perception of being “cured.” I am certainly not alone.
And this raises a controversial issue.
What does “Curing Cancer” mean? Seriously, what does it mean? I personally equate “cure” for cancer with “victory” in Iraq. It’s nebulous and subjective but certainly very catchy, sexy and marketable. I remember being told, “You’re cured. Go home. Get on with your life.”
Evidently, that’s not necessarily the end of the story; for me and millions of others like me.
I do not deny that the physical malignancy is gone. It’s been 11 years and there is still no evidence of biological recurrence. So everything is hunky dory, right? Uhm… no.
I may be “disease free” or “in remission,” but I am certainly not CURED of cancer. Remission cannot be equated with cure. Getting cancer and surviving is not a cure.
Remission is not a cure.
Being disease-free is not a cure.
I get sick to my stomach when I hear of organizations relaying, racing, running, walking and talking about a cure for cancer. In my opinion, there is no cure for cancer in the same way there is no cure for HIV, Diabetes, Asthma, Allergies or Autism. Fifteen years ago we funneled billions into HIV/AIDS research to find a cure and what was the end result? Better medicine. Better technology. Chronic condition. Manageable disease. Great strides. Revolutionary health outcomes. Lasting social change.
No cure. Or, from a certain point of view, the “cure” was in the “chronic.”
I am not looking to trivialize this in any way but in the U.S. at least, people live with HIV by taking a cocktail of medication every day for the rest of their lives. The virus never gets worse but it never gets better. Now considered a manageable disease, it was the new diabetes. A death sentence had become a life sentence of lifestyle management, dietary restrictions, ongoing medical costs and endless prescriptions. Today we don’t talk about “curing” AIDS, we talk about “ending” AIDS. The semantics make a difference.
In a similar parallel, I have several young adult friends who live with cancer, taking medicines similar to the HIV cocktail where the cancer lies in stasis, never worsening and never retreating. Is this a cure or the end result of better research, targeted therapies and molecular medicine? Instead of talking about “curing” cancer, should we be talking about “ending” it? Is the “cure” in the “chronic”?
With the dawn of the 21st century, it seems time to get with the times.
It should be recognized that the notion of cancer’s “cure” has been summarily supplanted with more appropriate and relevant language such as “easing the burden of cancer with a goal of eliminating death and suffering.” This was the new directive of the National Cancer Institute when it refocused it’s original declarative, “to cure cancer” back in 2003. So, if the focus is now on prevention, early detection, better medical technology and quality of life (e.g. survivorship), where does “cure” fit into this?
Is cancer the new HIV as HIV was the new diabetes? If so, how do we, as a society, reconcile that notion and reprogram our mindset from a 30 year “Manchurian Candidate”-style inculcation by the establishment that promised, as the old National Cancer Institute mission clearly stated, a “cure” for cancer?
“Cure” has unfortunately become nothing more than a catchy, exploited, arbitrary and abstract health marketing term that has lost all sense of meaning and purpose–and I am not alone in this sentiment. No one wants to lose hope but reality needs to settle in on what’s going on in this country with cancer now considered by all measures of public policy to be a chronic condition and manageable disease.
Perhaps someday down the road a “cure” may take the form of individualized genetic vaccines, which enable our bodies to manage cancer cells more effectively and prevent them from spreading rampant. But we’re still going to get cancer. It just won’t be nearly as life threatening or life altering as it is today.
Here’s more food for thought: Cancer is a naturally occurring biological process that is as old as evolution itself. It is impossible to cure it or end it, just manage and control it. Not to mention the fact that we direct most of our energies treating cancer’s symptoms and not the causes that induce the process by which it overwhelms our autoimmune systems and spreads. The wildfire-like rise of cancer incidence over the past 20 years has brought shame and disgrace to the Nixon administration’s declared “War on Cancer” from the early 1970s. (How’s that going anyway?)
More so, the continued defunding of the National Cancer Institute budget by the current administration is yet another perfunctory slap in the face to the more than 10,000,000 American cancer survivors (and their 30,000,000+ caregiver network) who should be rioting in the streets in unification to demand answers and action on the part of the 2008 presidential candidates. Where do they stand on the issue? Hillary? Obama? Are you going to publicly promise to replenish the depleted NCI budget for 2009?
Frankly, I’m willing to bet that if Jenna Bush got cervical cancer tomorrow, George W. and his unenlightened cadre of myopic cronies might reconsider what he has done to decimate our hope in the government’s prioritization of this public health epidemic.
Yeah, I said it.
I am a survivor because I choose to be. I wear my experiences like a badge of honor. I am proud of what I have been through and hope to encourage others to stand up, embrace their survivorship and shout to the rooftops, “I Am Still Here.”
And when you’re young, it’s terribly isolating. If I have learned anything, it’s that psychosocial support and access to those resources is as critical to survivorship as is access to quality care. It may suck, but at least you’re not alone.
And one more thought. I hate when people refer to us as “victims.” That’s about as low as you can get. Seriously, what’s wrong with you people?
Never use that word again.
As I mentioned before, cancer, at least for me, was not per se a death sentence. It was an actually nascent to a life sentence of vigilant self-advocacy in navigating the chronic (and hopefully) manageable diseases and health conditions that continue to befall me in the wake of my simply not dying from cancer 11 years ago.
Get with the program.
There are 10,000,000 of me living with, through and beyond cancer in the United States, 600,000 of who are still under 40 and have the rest of their lives to consider the impact of their survivorship long-term.
Think about what “cure” means to you and where you give of your time, talent and treasure. It’s 2007. Has your charity gotten with the program?
Life is about choice.
Remission is not a cure.
Survivorship is all the rage.
I am still here.
You are still here.
This is why we fight.
This is life + cancer. No cure.
Thank you for your prayers.