Running to Stand Still

That time of year is coming. The pink is starting to take over the world, Komen is going full bore with the outreach, and I find myself in the juxtaposition of wanting to spread awareness and being very wary of getting myself "pinked-out". I think it's been a struggle for me, always, to find my way and fit in with the "survivors", even though I was originally diagnosed as Stage 1. The "survivors" shown on the literature, the brochures, the commercials - those smiling long-haired people that never seemed to miss a beat - whether or not I looked like them, I always had to wonder. Seven years later, all of a sudden I'm diagnosed with Stage IV, and as we know, there is no Stage V. A year past diagnosis, I find myself fortunately NED, but I also know that once you get to Stage IV it's not a case of "I had breast cancer", it's a case of "I am living with breast cancer".

The Breast Cancer 3-Day is approaching and for some reason, this event just feels different for me than the others. Different in a good way. Maybe because I don't have to wear my survivor stripes until closing ceremonies - aside from last year when there was no hiding baldness. I suppose I'm getting older when I don't hear "How old ARE you??" or the sympathetic clucking from the old ladies, or the questioning stares when I pick up my pink tee shirt. Then again, it hasn't completely stopped. Yes, I'm young, but those out there are so much younger nowadays.

It's hard to digest. It's unbelievable at times. I've been sporadically frequenting a pretty incredible website Young Survival Coalition and I have seen some incredible stories of perseverance, survival, support, and encouragement. I don't know if it's an unusual trend, but lately, people die. At an alarming rate. And they are dying younger and younger. They leave behind husbands and children, siblings and parents, friends who have held their hands until their last breath. Too many of them die, and it's always too damn soon. Always. At times, it's excruciating to read over there - another memorial, another funeral, another life cut short by the spread of breast cancer. Many times I have to step away for a while, lest I forget that the website is not only a microcosm of the population of breast cancer survivors, but a microcosm of YOUNG breast cancer survivors as well. These people's lives are huge, but they are a pebble on the side of the mountain when the view is 30,000 feet. It's hard to remember that fact when nearly a dozen have passed on since the beginning of the year.

Me, I have constantly struggled with the concept of "survivor" from day one. What made me different than anyone else? The thing is I suppose that by virtue of the simple fact that I am able to wake up each morning, I am a survivor. To me, survival simply means "life" for however long I have it. I also know that I fought my little heart out and am incredibly fortunate to currently be "Stage IV, disease free". I've actually been told that people have read about it in books, and they are reassured to know that it actually exists. Does that mean that those who fought and lost their battles had any less valiant fights? Of course not. I also know that my situation could change in the blink of an eye - but hell if I'm going to wait around for that to happen.

I'm at an interesting crossroads, and in many ways, it's time to step back from the cancer being such a huge element in my life. It's time to focus on the things that I have the chance to treasure right now. The fact that it is finally getting cooler and the true beautiful weather is just around the corner - which means long hikes, holidays approaching, the Grand Canyon at Christmas with the privilege of both energy AND hair. It's time focus on things at home, and freelance work, and getting my body even stronger. I sent off my wig the other day to someone from YSC who will need it in the near future. I simply can't hang onto it assuming that I'll need it again one day.

I think it may always be a challenge for me to stand up and say, "HEY, look at me. I'm a survivor" but over the past year, and encouraged by many around me - not the least of which is the person I share my life with - I have sucked it up and stood up and have allowed myself to share my journey and be a face, at times, of someone living with this on a daily basis. Most of the time, there IS no face to the Stage IV patient and no distinction from the "smiling survivor" in the ads. The irony is, it's that time of year, and this is the time when it's most important to make an impact.

I've been told that what I do just might remind someone to do a self-exam, or to motivate someone else to walk next year—and add invaluable funds to help find a cure. What I do just might help someone currently fighting the battle to dig a little deeper, and wage the war with new-found courage. What I need to do is put a face to Stage IV and say to everyone who has just been diagnosed, whether DCIS or Stage IV but still scared - to those who have been left behind and had to say goodbye to the love of their life, to their mother, to their child, to their sibling - it can be done and not everyone dies from this. Perhaps my presence will remind someone that their efforts are not in vain.

Hope. I'm simply not convinced that there won't be a cure one day. And we need one so god damned badly. Unfortunately, I know that one day is not today, and chanting "I am the cure" just seems ludicrous. I am not the cure. Research is the cure. Development is the cure. But yes, I do have a dream of a world where there is a cure.

Is that overly optimistic? Maybe. Personally, I can't stop and lose hope or belief in the fact that I am going to live as long as possible, because even if it's a pie-in-the-sky hope, it's mine. And yes, I am Stage IV. And living. I don't join in the chants, I don't attend the rallies, I don't drink all the Kool-Aid, but hell yes, I am a reluctant champion. Even more so, now - and for so many more reasons.

3 comments:

    I was helping set the "pink" wall at work yesterday...28 feet of pink everything from mops to popcorn makers to candles to pillows. While I like the concept of "pink," I do wonder if it's gone too far. Will we be so saturated by "pink" that people won't care anymore? I hope not.

    I have a friend who is kinda/sorta facing a similar situation, although not with breast cancer.

    Joslyn is a 30 year old with cystic fibrosis. So, she's one of the old ladies of that group. And she is choosing to be the face of cystic fibrosis in adults, but I can tell it takes it out of her.

    Anyway, I ramble. I love ya!

    I can't imagine people ever being "pink'd out" and it is wonderfully brave of you to get out there to be the face of stage IV - you have given hope to this survivor, and for that I am eternally grateful.

    Kiss,Kiss