Thursday, December 18, 2008

What Cancer Feels Like

It's a beautiful day in LA today. One of those days where you almost, for an instant, forget that cancer has once invaded your soul, the spirit that makes you... you.

Crossed the threshold from bad nightmare to horrible, sobering reality.

I'm convinced that cancer is not a disease of the body.
Instead it attacks where we are most vulnerable. It hits us where it hurts most, the most tender of tenderest spots.

I was talking to a friend of mine the other day, hoping to explain to him what the experience is like.

How do you even begin to describe it really?

Hearing those words from your doctor for the first time feels like you're falling down a dark, endless pit. You continue to fall until you hit rock bottom. And although you are bruised, battered, and terrified, you dare not show those around you.

You smile when you want to cry.
You cheer for others when you really need cheering yourself.
You say it doesn't hurt, but it hurts more than you could ever have imagined.
You say don't visit, but you would like nothing more than to be held.

Too much is riding on your faith, too much hope riding on those fake smiles.

And when you land, it feels like you are in a pitch black room... soon you notice you are completely and utterly alone. You try as you may to feel around you, but everything seems foreign. Nothing to hold onto, nothing to climb out of. It is cold, dark, and unforgiving.

Soon, you don't even recognize your own body. How can you really? Scars, bumps and bruises. Your face doesn't even seem to look familiar anymore.

Eventually, you learn to feel accustomed to the darkness, stumbling around for anything of significance to remind yourself of the life that seems so far gone.

You hear voices, those of friends and family that are doing their best to support you, but nothing is meaningful.

People say they understand how you feel, but you know this is not true. It's something said to calm your fears, and to calm their worst nightmares.

You live day to day existing. Getting high on pain meds, dilaudid, morphine, fentanyl, providing brief breaks in time, allowing you a deep breath, faint reminders and scents of the old life, one where everything was sweet. When the drugs wear off, you stumble back into the darkness, hoping and praying that it will end soon, be it the treatment, or the life you are clinging so softly onto.

Then, suddenly, almost at the final hour, you seem to notice that you are not alone in dark. You make out faint shapes.

One, two, five. You hear the familiar words of your own worries, voices recounting stories that sound like your own. You feel an immediate bond, one stronger than anything you've ever felt before.

You realize slowly, but surely that you are surrounded by other lost souls. Ones that seem to genuinely understand the depth of your personal pain. Never judging... only accepting our shared fate. This connection doesn't come difficult, it's as natural as the day is bright.

You learn the meaning of friendship, kindness, generosity, patience and love. The darkness slowly begins to subside, leaving behind a brief haze. And though it may not be the shining sun, you realize that the endless night is beginning to actually end.

With it comes a faint haze of sunrise, and as you look around you, you realize you were never really alone. That we are forever connected, and our journey is one that is taken by all of us.

Talking with other survivors has showed me that regardless of age, gender, sexual orientation, financial situation, or anything else really, we are all in this together.

Hoping that the chapters of our lives will not be filled with agony about the cancer that struck us, rather filled with a triumphant story of a young person who yearned for more than just being a victim of a horribly insidious disease, but someone who will be remembered as a loving person who did the very best with what he or she was given.

It is the most amazing feeling in the world, one that is undoubtedly one of the few rare gifts of cancer...

Nasopharyngeal Cancer Survivor

Thursday, December 4, 2008

Livestrong Young Adult Alliance

New Friends-Same Passion

What a great meeting. A group over 100 assembled at the Annual Young Adult Alliance on November 12th -14th to share collective experience to advance Young Adult oncology. The conference started a day early for me as I had an opportunity to meet with some folks from the LAF and share some best practices and brainstorm about the year to come. I also had the chance to catch up with a friend who now works for the LAF. Small world! We had a great time and were also able to share ideas and inspirational stories.

Topics included Resource Sharing, Young Adult Clinical Trials, Follow up Care, New Forms of Media, Standards of Care and Awareness.

Partnerships and Collaboration were some of the key themes that were my take-aways from the meeting. Some great relationships were formed and wonderful and powerful ideas and plans for 2009. There is much momentum in the cancer community and it is our charge to act united and efficiently as we all focus on our fulfilling our Missions in the year to come. New task forces were formed and strong initiatives were structured. Our challenge now is to make sure that we keep our focus and act collectively unified so that we will have great success stories to share at next year’s meeting. These are truly special people. All having made a commitment to supporting the cancer movement. Everyone has committed in different ways, but share the same passion and determination in their organizations mission. I have never met more passionate people than I did at this meeting. It is cliché, but it was truly inspirational.

We had a great key note address from Doug Ulman, President of the Armstrong Foundation as well as a being able to welcome Eric Shanteau, a member of the US Olympic swim team and cancer survivor, to the LYAA team. Eric shared his story with all of us and he was able to mesmerize the crowd of his story and his courageous and patriotic decisions. WOW!

A great group and a powerful ALLIANCE!


UCF Staff

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