Life is about choice.
Remission is not a cure.
Survivorship is all the rage.
Why we fight …
I was 11 years old 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 it with precision. The next words out of her mouth were, “You’re getting lessons.” At that point, I knew music would always somehow be a part of my life. It was 1985.
It wasn’t until my third year of college that 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 and I knew where my life was going.
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 the summer of 1995 I was enjoying a paid summer internship for Dean Witter in the World Trade Center when I first began to notice that my left hand was behaving strangely. It wasn’t until I got back to school and begin playing piano again that I noticed a major difference. That fall, my hand slowly lost its 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 put my dreams on hold.
My invincible life came tumbling down in an instant and two words summed 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? 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?
I was told that my life in the wake of my cancer diagnosis may not be a bed of roses given the 33 torturous post-operative sessions of high dose craniospinal radiation (5940cg) I was getting. Upon completion of treatment, I lost 110 pounds in less than three months. After throwing up five to 10 times per day during that period, I 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 percent) leaving me with a chronic xerostomia (dry mouth). I was left virtually infertile, my testicles and sperm production 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 and, even more scary, a near certain and unpreventable secondary recurrence of cancer within 10 to 20 years.
I may have survived, but only in the loosest sense of the word. I presently 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. One of my happiest days was when I released my first solo piano album – Scribblings — of songs that had been composed in my head for almost three years post-treatment. It took that long for my left hand to regain its strength and dexterity at the keyboard. I may never be the Hollywood composer but I still had my music. A second album followed two years later and a third was composed but never released.
Then 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 18, 2007, within a span of three days, I lost all hearing in my left ear. The diagnosis? “Sudden Sensory-Neural Hearing Loss,” a rare condition that my oncologist confirmed is without a doubt a long-term side effect of my postoperative brain radiation. I can only imagine what may lie ahead. 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 its ramifications.
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. All of the odd medical issues I’ve had for the past 11 years have wreaked havoc on my perception of being ‘cured.’ I am certainly not alone.
And this raises a controversial issue.
What does “curing cancer” mean? 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 or 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? Ummm…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.
It bothers me when I hear of organizations relaying, racing, running, walking, juggling, cycling and promising 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 United States 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 is the new diabetes. 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 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. 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 its 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?
“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. 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. 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?) Moreover, the continued defunding of the National Cancer Institute budget by the current administration is another perfunctory slap in the face to the more than 10,000,000 American cancer survivors (and their 30,000,000-plus 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 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.” Which is why I hate when people refer to us as “victims.”
Never use that word again.
Cancer, at least for me, was not a death sentence. It was a life sentence of vigilant self-advocacy navigating the chronic conditions that continue to befall me in the wake of my simply not dying from cancer 11 years ago. There are 10,000,000 like me living with, through and beyond cancer in the United States, 600,000 of whom 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 in 2007.
Life is about choice.
Remission is not a cure.
Survivorship is all the rage.
This is why we fight.
This is life + cancer. No cure.