...Lace Up Your Gloves...

Grand Canyon winter
Inhale the cool mountain air
Exhale the demon

Each scan will bring a new reason for wanting it to be clean. Whether it be the first one, or the second one, or the Canyon or the next anniversary - there really will never be a "better" time than another for it to come back less than flawless.

Meanwhile, I can't still spend time living from scan to scan. Imagine what I'd miss in the meanwhile.

Sometimes I feel as though I did too good of a job breaking out of the fortress that I had built around myself. I think that sometimes, in some ways I've turned into what a friend referred to as the fragile flower, when speaking of her own experiences. The hearty, vibrant bloom with an exterior that betrays the fact that inside - ironically, in what's called the "ovary" - are pieces that need to be treated gently and with extra care. Most times, I feel that it would best suit me to find the middle ground between the glimpses of fragility and re-growing some of that elephant's hide.

The rest of the time, I just keep going, living, loving, breathing.
It's still what I do.

Miracle patient
Love hope strength treatment believe
Continue to thrive

Ironically, aside from the recent media blitz, there hasn't been a lot of cancer conversation these days. It's been a welcome respite. The irony of that is that we're right in the throes of Pink-tober, and Sunday is this year's Race for the Cure. For the first time since 2000, aside from they year I was out of town, I'm not running. At this point, we're planning on going down there and walking it. In many ways, I'm looking forward to that, as the run always stressed me out so unnecessarily. This way, we can just be amongst the masses, and I'm not racing against my own personal time clock and running into the same wall year after year - chemo or not. In other ways, I'm a bit apprehensive at being lost and overwhelmed in the sea of pink. But Sa and Liz went to Great Adventure and walked last year. Mom and Sa walked in NYC this year. Shel runs every year in NYC and this year did fundraising, too - with my picture on her homepage. Greg ran last year with a crumpled up knee - not to mention all that he does on a daily basis for me, with me, in support of me. This year, I can show up and walk and attempt not to get lost in the crowd.

I realize that the "one in eight" statistic pertains to a woman's risk of getting breast cancer during her lifetime. I've always comforted myself with the somewhat ludicrous thought that I have this force-field around me that will shield most of the people I love from being afflicted, since I've already taken the bullet. So far, it's worked. So far...

Then again, there's the woman from my office who I have befriended since her diagnosis. She's home this week recovering from her mastectomy, after enduring 6 rounds of A/C-Taxotere. There's the other unknown person that a co-worker said has been diagnosed but isn't ready to share the diagnosis with the world yet. There's the 34-year-old woman from YSC that I've corresponded with in regards to her training and fundraising for her first 3-Day in San Diego. She was just coming up on her first year after diagnosis, and instead of hearing good news, she found out her early-stage cancer with no node involvement is now metastatic. These people must have been outside the boundaries of my force field...

It's an interesting time of year... Breast Cancer Awareness.

I have seen paraphernalia in various places with the slogan
F*ck Awareness: Find a Cure.

Intrinsically, I don't disagree - there is absolutely nothing more important than finding a cure. A cure is vital. And truthfully, my eternally optimistic mind believes that it's feasible. I still believe in a world, one day, without breast cancer. I have to. But, we need that damn cure. Too many people have seen this beast take too many loved ones. Too many strong people have been incapacitated, either temporarily or long term. Unfortunately, it returns to haunt far too many people that had put it behind them - myself included. A cure is the ultimate goal.

The catch there is that a cure takes money. Research, development, clinical trials leading to the cure take tons and tons and buckets and truckloads of money. Without the bombardment of awareness that this breast cancer beast is such a problem, how the hell will we raise the money to fund the research to find the cure?

The people who have designed the F*ck Awareness: Find a Cure shirts aren't simply bitter, they are expressing their sentiments that awareness and early detection is great and all, but we need to reach beyond that. They are the ones, like me, for whom the awareness horse is already out of the barn and have become, like I have - experts on everything they never wanted to know. One woman told me,

"I want people to understand that my time is limited; I bite my fingernails nervously waiting for my treatments to fail me; I want to live to be 40, but I can't count on it. I think that merits an F-Bomb."

This is the same woman who has the following quote in her profile:

Frodo: I wish the ring had never come to me. I wish none of this had happened.
Gandalf: So do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given to us.

It's not bitterness, it's frustration about the type of awareness that is needed and the fact that the term "awareness" doesn't necessary express what people REALLY need to be aware of - the fact that this is some serious shit. Not the people need to "know their bodies" early detection kind of awareness. I was detected early too. We need to spread the awareness that this is killing people. That it's not all pink and ribbons and pretty. I don't love that many people are aware of it only on a superficial level, and as much as the pink blenders, and ped-eggs, and toenail clippers, and ear hair trimmers make me cringe, they generate money. Maybe that is looking at it from a "sell out" perspective. I don't know. What I do know, is that I want that elusive cure, too. It's not about "saving the boobies", it's about saving the LIVES.

Komen for the Cure has a rally-cry of "I AM the cure!" It makes me cringe, and I'm sure I'll hear it Sunday.
I am not the cure. We're still waiting, and we need one.

I want to live to be 40, too. I'm counting on it. I realize how fortunate I am to be riding the wave right now. I'm all too aware that Stage IV, NED is an anomaly. I know that each scan could show that it's back. Many times it does deserve a whole string of F-bombs.

Dr. C ordered another quarterly scan. I suppose I had this idea that I would make it through until the end of the year without a scan and by default, be guaranteed to make it through both Thanksgiving and Christmas without any type of treatment, or treatment-related maladies. He wants to scan in November. Yes, I knew it was three months. I don't know why I thought maybe he'd let it slide. In the big picture? I'm grateful that he is so proactive with regards to scanning. In the small picture, just the inkling of a thought that I might not make it below the rim this year brought tears to my eyes. Realistically, I can't rely on the "what I don't know won't hurt me" concept in this case. So, when EVDI called, I scheduled the exam. Ironically, I'll find out the results after returning from the 3-Day. Greg has already promised me that we'll just find out even sooner that I'm still healthy. He was right the last time...

"I'm proud to be your doctor."

We actually heard that the other day. How many times does a patient hear that? Dr. C isn't one to blow smoke though - for the eight years I've known him, he never has been one to sugar-coat much of anything. I forget, sometimes, that my continued "remarkable" response is a victory for him, too. I can't imagine, as an oncologist, how difficult it must be to have to face patients upon patients and have to tell them that whatever the cocktail they had been taking simply isn't working anymore. I hope to be his ray of hope in an often dark world for as long as possible.

I'm still going to taste Thanksgiving. I'm still going below the rim. I'm still going to savor our bottle of Paul Hobbs on Christmas Eve. From what I hear, it's simply NOT up for discussion.

CURE is a quarterly magazine that we had first picked up at Desert Oncology during a particularly long wait. They offer complimentary subscriptions to patients, survivors, and caregivers and we have found many of the articles to be interesting - and straightforward.

Back in early April, I got a wild hair and decided to make an attempt to take some these random ramblings and do something productive with them. Encouraged by a handful of suggestions and one particularly pushy... er... enthusiastic friend (thank you, Bella) that I should make something more of some of these writings, I submitted a handful of entries to a couple of magazines, including CURE.

After not hearing anything for months, I received an email from CURE that they wanted to include my submission in their Fall issue. In disbelief, I signed their contract, sent it back, and not long after, received my small (but IMPORTANT!) check in the mail. Sure, I should have framed it, but I chose to do the boring thing with it, and stuff it in the bank. I didn't mention this to too many people - I'm not quite sure why - perhaps I wanted to see it in print to make sure it was reality.

We haven't received the hard copy yet, although I'm certain it's on its way - but the issue went live online today.

My First Byline!

First, perhaps only, but either way, pretty cool stuff...

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.