On March 28th, 2007 I went spontaneously deaf in my left ear. Yes. it apparently can happen just like that. It's called Sudden Onset Sensory Neural Healing Loss and it happens every day, mostly to old people. Evidently, the cochlea just wakes up and decides to stop working.
It was the general consensus of my entire medical team that this was -- for me -- in fact a late-effect rearing it's ugly head after all that Chernobyl-level head radiation I had when I was being treated for brain cancer in 1996. Two weeks of Prednisone plus three months of recovery and I was fine. Thank God.
The experience yielded my first essay, "The Cost Of Living: No Cure For Cancer" which was featured on The Huffington Post. I somehow felt that getting it all down on paper would be karmically cathartic enough to put to rest any remaining fears, apprehensions or frustrations. We all know the saying, "I've been through worse" but apparently the best is always yet to come.
Well, it happened again.
February 2nd, 2009. Only this time it's my other ear. WTF? So thanks "Late Effects Fairy" for keeping me sane and reminding me I am living on borrowed time and trying to make the most of what I've got right now. You should leave a dime under my pillow. And so, I'm going back on Prednisone and can only pray it works as well this time as it did last time. So here is my as-to-be-expected ensuing rant.
Life is about choice. Remission is not a cure. Survivorship is all the rage.
Why we fight ...
"You're cured, go home!," sayeth the Doctor.
"Kiss my ass!", sayeth the me.
Man, if I had a dime for every time I've heard that. Well, actually, I've only personally been told that once back in the stone age of 1996 when I was diagnosed with brain cancer at the age of 21. So congratulations me! I have 10¢ -- and I can't even make a phone call anymore. Hell, even gum is 25¢.
However, if I had a dime for every time I heard that from another young adult survivor, well... I'd probably have about $124. Do the math. That's still a hell of a lot of pissed off people. And a tank of gas in your Escalade.
So, when I was actually told "You're cured, go home!", it was March 30th, 1996. I was an aspiring concert pianist and composer at the time just six months shy of my college graduation. At the time, however, this fabulous malignant brain tumor crippled my left hand negating 10 years of classical training and rendering my dreams to be a Hollywood film composer crushed, diced, minced, pureed, ingested, digested, and then crapped out into a martini glass. Many people know this part of my story. If you don't, welcome to the party.
Apparently "You're cured, go home!," rarely takes into consideration what, precisely, your life after cancer will look like. Just a handful of my then-never-to-be-answered personal questions included "Will I be able to play piano again?", "Will I have children?", "Will I be alive in 5 years?", "Who's going to pay for all this?", "What about my family?" "How will I ever get life insurance now?", "How will I reintegrate myself?", "What the hell does 'new normal' mean anyway?", and the grand daddy of them all, "What now?" Mostly selfish questions but appropriately justified.
My favorite was "Where are all the other people who look like me?" (Cuz, frankly, I'm über sick of all those well-meaning geriatrics in the waiting room staring me down with pity.) "Oh, you poor thing. You're too young for this", sayeth the Octogenarian.
"Enjoy your gumming, Agnes or Thaddius or Esther or Pappy", sayeth the me.
So apparently, from the lack of support I received specifically from the medical community, it seemed that life after cancer must be only about heartbeats and breaths? After all, who cares whether you're missing a ball, a boob, half your brain, pubic hair, your dignity or perhaps several inches of your colon?
The point is you're alive, right?
And isn't that all that really matters?
"We're trying to save your life, Matthew!", sayeth the doctors.
"At what cost?", sayeth the me.
You see, there's this thing. It's not really anything. Just an afterthought. It's a meaningless term. Barely mentioned. Harmless, actually.
It's called quality of life.
Apparently the 'Aha! Moment' is that there's more to the 'cure' than just toxic medicine and a placental discharge back into the real world. When your clinical cancerverse runs out and the most frantically panicked day of your treatment is your last day, life does not just magically start anew. There's no magic fairy with a bad 1940s hairstyle to sprinkle pixie dust on you and poof that whole "crying in the shower" thing mystically transmogrifies into a perfectly holistic serenity of "nothing will ever bother me again and all my cares are footloose and fancy free."
No, life after cancer is just as -- if not more important than -- life with and through your diagnosis, surgery, radiation, chemo, bone marrow transplants, platelet infusions, port surgeries and stem cell fabulousness.
Ah, smell that metallic taste in your mouth.
And cancer isn't just about babies, boomers and seniors anymore. It's about young adults too, a population for whom there has been zero improvement in survival rates in 30 years. What makes it worse for young adults is that we actually hope to have a good 60 or 70 years of life left to live and dealing with this crap kind of cramps our style big time.
And don't get me started on the "Can't we all just get along?" bent.
No, we can't. Not at least until we have a fundamental understanding that we will never be able to truly and directly relate to one another's uniquely generational and individual experiences outside of the whole fear thing. With 99.9% of the focus in this country on the 94% of people who get cancer (10,000 children and 1.4M adults over 40), how is it fair to ask us to get along when we've been ignored?
Personally, I didn't want to then and I still don't want to now have my survivorship associated with anything that even remotely stinks of children, boomers or seniors. I like our little niche club. It's like Fight Club with chemo -- only we are allowed to talk about Chemo Club and tag/share/tweet/blog/digg our bitterness, angst, anger, frustration and countercultural resentment right back out to the world.
The young adult cancer movement is just awesome.
Permission to rebel. Speak our mind and finally have a voice...
"This is what matters to us!"
Some say I was given a gift. I often see it that way. The gift of surviving cancer. In fact, I once heard someone say that they don't consider their cancer experience a gift because they'd "never want to give it to someone else as a present." Isn't that why they have gift receipts? Could you just imagine a gift receipt for some cancer?
Me: "I'd like to return this."
Apple Store: "Is something wrong with it?"
Me: "Uhm, yeah. It's cancer."
Apple Store: "Did it not work with your operating system?"
Me: "Dude, it's cancer. I want a refund."
Apple Store: "How much RAM do you have installed?"
Me: "English dude, it's cancer. I want a refund."
Apple Store: "Sorry but we only do exchanges."
Me: "Jeez. OK. What does that mean?"
Apple Store: "You can get something of equal or lesser value."
Me: "F@ck me! Fine. I'll take diphtheria."
Apple Store: "I'm sorry sir we're out of that."
Me: "Can you suggest something semi-nonlethal?"
Apple Store: "We have iAbetes and eBola, our top sellers."
Me: "Actually, I'm just going to leave now."
Apple Store: "Have a good day sir."
I digress. My "gift", like that of so many others, is one that has a tendency to keep on giving. And giving. And giving. In fact, it's been so incredibly generous, that I can safely say that each and every year since I was "cured", cancer's gift has yielded way too many fond memories of said generosity. Thankfully, I should strenuously point out, none of which to date have involved a recurrence.
The issue I can't help but continue to shove down society's throat is plain and simple. There's more to curing cancer than just research. Research. Research. Research. Marcia. Marcia. Marcia. See you on the see-saw Cindy!
While everyone is relaying, racing, training, frolicking and crocheting for the cure, millions of Americans (and in particular hundreds of thousands of young adults) actually don't die and are faced with the challenge of rebuilding their lives, starting over, often from scratch without any help.
And that is not OK -- especially for young adults.
Where is the awareness for "what's next?"
We live in a society of extremely generous individuals who want to help. They want to make a difference. But it's often just too easy to drink the wrong Kool-aid and find out your good intentions have been subverted by clever branding, peer pressure and colorful marketing strategies that make unicorn promises.
I've been saying this for 10 years but "Do you know where your money goes?"
What is the transparency and accountability policy of your favorite charity? Have you ever asked to see it? Or their tax returns? Have you ever visited Charity Navigator's website and seen what one of America's #1 nonprofit watchdog groups has to say? How do you know you are actually making a difference? It's rhetorical I suppose.
It took 20 years for the word "survivorship" to enter the mainstream of our pseudo-collective consciousness as a survivor community. So the basic concept of "what's next" is beginning to penetrate, thanks, in part, to the Lance Armstrong Foundation along with emphatic passion and commitment of the young adult movement.
But for the overwhelming majority of Americans -- and I suppose you truly can't fault them for this -- cancer is still the most feared subject in the country, according to a recent survey by the Tower Cancer Foundation. We fear cancer more than terrorism. That's how bad it is, the irony being that, on the whole, while a pejorative experience, it is a largely survivable experience, unless, of course you're between 15 and 39.
There was a time when we feared HIV just as much. But it's not a death sentence in this country anymore. When did that change? Was there a tipping point? An exact moment when the rift tripped? And, more importantly, will we ever get to that same place with cancer? I don't think it's a question of if, but when.
My job here isn't to scare people to death with the notion of recurrence, secondary cancers, late effects, post-traumatic stress, etc... but they are grounding realities that are instilled within the very nature of survivorship, inconvenient truths that cling to the inner digestive walls of our psychology. Cancer may actually be a gift. It may give us perspective, a new philosophy, dogmatic reassessment or even grounding purpose.. but it does take. And sometimes what it takes cannot be replaced. Reminders of it's influence, no matter how subtle, influence how we choose to live our lives... as victims or survivors. As sufferers or warriors. As fighters or champions.
Challenge is opportunity and, while we're light years from where we came, we still have quite a ways to go. We're not where we were but where not where we'd like to be. The very fact that we are in a position to challenge cancer 'progress', ask hard questions, take on the establishment and hold accountable the government, the insurance industry and major cancer charities is itself a social statement of progress.
In fact, if you'd have told me when I was diagnosed that 13 years later there'd be two cancer talk radio shows -- one just about young adults -- I'd have told you to go jump off a bridge. If you'd have told me that there would be a cancer revolution from the youth culture, I'd have thought you were nuts.
If you had told me that "the next me" wouldn't have to go through the same crap as I did", I'd have asked you to just leave the room.
Yet here we are. And isn't that what cancer advocacy is? Ensuring that the next "you" doesn't have to go through the same crap you did? See, the taking tree does give. Whatever cancer has taken away from me in part or in full has been replaced with passion, energy, commitment and responsibility to roll up the sleeves and give back. This is the virus we want to spread.
The disease of social consciousness, personal accountability, self-sacrifice, altruism and both individual and community reward.
One in 50 Americans between 18 and 40 and one in 100 American college students is a cancer survivor. Chew on that. They are all around us but you'd never know because we look just like you. It is important to recognize that we have made incredible strides for the majority of people who are affected by cancer each year. But for young adults, we are only just now getting our comeuppance and a global voice to share our own generational grievances, public health disparities and too-often ignored unique survival issues.
After all, at the end of the day, the message is "Shit happens but this is how I am going to get busy living, dammit." We want cancer to be a speed bump so we can get back to our derailed plans. How dare this get in my way? Seriously.
The taking tree has got nothing on me. On you.
So if and when you hear the words "You're cured, go home." or "Now get on with the rest of your life." or "What have you got to complain about, you're alive!" or "There are people worse off who didn't go through what you want through.", just remember the young adult social movement has your back like no one else. The rest of the world doesn't have to get it, but we do.
So take my ball, boob, brain, hair, hearing, colon and dignity.
I will find something equal if not more fabulous to replace it with.
Perhaps a Snuggie.
After all, if cancer is the worst thing that has ever happened, just think, "Been there. Done that. What could possibly be worse? Bring it on."
Then again, if it's a gift, just don't re-gift it.