Tuesday, October 16, 2007

Why I walk...

For those of you wondering what this mythical speech was... Here's my nearest recollection of it. I didn't write it in advance or anything - just had some notes. I'll try to piece it together for you. In order to experience the magic, you must imagine me, Ronald McDonald head and all, in track bottoms and a t-shirt. Probably a little sweaty and gross from twenty miles of walking. Perhaps a little tipsy from the celebratory drink at the bar on the end of that day's route. Talking to a group of 2000 or so walkers and volunteers. Trying to be eloquent. Trying to toe the line between funny and - my favorite word - inspirational. This is what came out.

My husband and I rang in 2006 with a kiss. We brought in the New Year with promises of a wonderful life together. We had recently bought our first house and would be moving in the new year. My husband was about to graduate and had a great job lined up. I was finally doing something I loved. We were planning to have a baby. In fact we were trying - very hard - for that baby already. My husband looked me in the eyes, gave me a kiss and told me, "To 2006 - the best year of our lives."

We had no idea that lump I felt a month before would change everything.

On Valentine's Day 2006, I was in the hospital getting tests and a biopsy. Because nothing says "I love you" like the clamp of a mammogram machine and core needles. Two days later, our world collapsed.

"You have breast cancer."

It was a month after my 29th birthday. And I have no family history.

In the midst of phone calls and doctors appointments and freaking out, a package arrived at our apartment. It was information for The Breast Cancer 3 day. My husband had requested it. Like any man, he was looking for a way to "fix it", to do "something." He signed us up for our first 3-day for October of 2006. It would be something to work toward, a reason to get my butt out of bed during chemo, a celebration of victory.

My journey continued. I had surgery. I harvested and froze eggs to protect that family we had planned for. I had chemo. Halfway through chemo I moved from Chicago to Atlanta. Nothing gets you out of moving heavy boxes like cancer. I underwent radiation treatments. I started hormone therapy. I'm currently in a trial that keeps me in menopause in the hopes of keeping the cancer away.

And in October of 06 I walked my first 3-day. I was bald and chubby, only a month after my treatment ended. I was tired. It was hard. People asked me, "How can you do it?"

My response... "How could I not?"

Since being diagnosed with breast cancer, I've met wonderful groups of people who show me each and every day what courage really means. I've made friends and found new sisters. And last Valentine's Day... instead of laying on a cold, hard hospital table, I jumped from a plane at 14,000 feet. Since breast cancer, I've posed nude for photos, swung on a trapeze, taken pole dance lessons, joined a survivors gospel choir... there is nothing too wild and too crazy. I am living proof that breast cancer can hit anyone, anywhere. I am proof that you can find a new way to live.

Because you have to.

So that's why I walk. And I will keep walking:

Until doctors stop saying, "You're too young for breast cancer."
Until women everywhere get access to the same care I was lucky enough to receive.
Until research doesn't just find a cure, but the cause of breast cancer.
Until no one, and I mean not a single person, faces cancer alone.

I walk for Ruby and Candy - beautiful strong women who lost this fight. Who taught me more about grace and dignity than I could ever imagine.

I walk for members of my support groups. For the women who take the time to share their stories and help those of us following them on this path.

I walk for survivors everywhere.

I walk for all the names on those signs on everyone's backs.

I walk for the names on those tents outside.

I walk for the names on the signs at the cheering stations.

And for the people who took the time to make them.

I walk for the woman who is sitting at home right now, waiting for that life changing phone call.

I walk for every person whose life has been changed by breast cancer.

For the families and friends. For my own nieces. And for hopefully one day my frozen babies that I have waiting for me.

And I walk for me. Because, dammit, I deserve a lifetime.

Monday, October 15, 2007

The 3-day

Heather, Me & Jill

I walked my second Breast Cancer 3-day this weekend. This year, I was joined by my husband and two friends from college - Heather and Jill. I've lived in Atlanta a little over a year, so this time; I actually knew others on the walk. One of my closest friends in the ATL, Jenn, joined us as well.

How was the second one, you ask? Was it any less meaningful? Had it gotten old?
Me, Jenn, Jill and Heather at Opening Ceremonies

Jill, Heather and Me walking over the Chatahoochie River

Sure, I knew about some of the "pref nite pitfalls" - the times when tears were pretty much a given. Opening ceremonies, cheering stations, closing ceremonies. And I had hair this time, so I wasn't quite the walking ad for cancer I was last year. Not nearly as many people came up to me and gave me the sad eyes, which I was grateful for.

Alan was a champ. Although he was pretty grumpy the second day... he hadn't slept well. We found a bar at the end of the route on Saturday and got Alan a pick me up beer. Or three. Apparently, about 200 other walkers had the same idea.

Here we are at the bar.

Saturday night, I was also chosen to "tell my story" for the group of walkers and crew. I had to get up and rehash a whole bunch of cancer stuff. I attempted to keep any stray tears and not to drop the "f" bomb. I managed to keep from sniffling for the most part - and I only said "dammit" once. Not bad.

Funny though, once you put your life story out there on display, people feel the need to come up and talk to you about it. And I encourage it. However, in my speech, I did mention the whole frozen babies thing... and as only happens in the south, I'm convinced... that's the part people listened to. So I got a lot of "you'll have those babies, honey," randomly in all parts of camp and on the route. That wasn't really the point of the aforementioned speech, just what some people heard.

I swear, nothing gets a collective gasp from the audience like saying you're 30 years old and in menopause.

One thing that did move me greatly... a couple of women that I walked with into closing ceremonies last year found me. We made an annual date to walk each year together. So here's a shout out to the Dixie Cups!

Alan & Me in Piedmont Park

I am so very glad I did this. And I plan on doing it as long as I'm able.

Friday, October 05, 2007

Mama's Got a Brand New Bag... I mean doctor

Those of you who talk to me regularly, or who read this blog, know that I loved my treatment at Northwestern in Chicago. Loved it. If you have to get cancer, get it at the Ritz, I thought.

Then I moved. Down to the South. And I finished my treatment at a big fancy academic university setting down here. Same thing, right? Same Ritz, different flavor.

Not so much.

I was never really happy at said treatment facility. I didn't click with my doctor, the infusion center was a bloody nightmare, and I had some questions about the care others were getting. But I was lazy. Tired. Didn't feel like doing the research. Figured they didn't kill me so I'd be fine.
This was until I was getting monthly shots for my clinical trial. Confused? See here. Anyway, I'd go for my monthly shot in the ass... one that takes all of .5 seconds - and I'd be waiting for 2-3 hours. The orders weren't in, they didn't know I was coming, they were just slow. It was the biggest crock of bullshit I've ever seen. This was the same place where friends of mine went months between seeing their oncologist - friends who were stage 4 and seeing the nurse instead. The same place that had you go to 3 different places in one appointment.

Yada, yada.

Anyway, recently, I decided I'd had enough. So I switched oncologists. And hospitals. I went with an overwhelming recommendation by the ya-yas. We all know how I trust the ya-yas. Funny enough. Those ya-yas... representative of money, power and families of Atlanta - only one of them was treated where I was. 80% were at the hospital where I was considering. I'm not into math right now, but at sounds good to me. So off I went. Not before I wrote a scathing letter to previous facility - (one I'm told did some good as changes have been made.)

Okay, back to the new hospital. Let me tell you. It's not the Ritz, but hot damn, it's a really great Sheraton.

I went in for my first appointment.
1. I waited for less than 10 minutes.
2. They did my blood work in the same place where my appointment with the doctor was.
3. The oncologist spent 45 minutes with me. Probably more than my other oncologist down here had spent with me total. He asked questions. Told me I sounded like I was a doctor. (I have an internet MD)

When I asked him about a PET scan, he said... "now, I could tell you why they're not necessary, or I could shut up and order the scan." I said, "What do you think?"
His reply? "I'll just order it, then."

I loved him. It was like having a cancer dad right here in Atlanta. I couldn't be happier.

Moral of the story? Sometimes, the "best" place isn't where you'll get the best care. If you're not happy with your doctors, then get new ones. Trust me, it was one of the best decisions I've made since I got cancer.

Tuesday, October 02, 2007

Multimedia, baby...

You miss the sounds of my dulcid tones? You want something to lull you to sleep at night? You think maybe I got a little of that throaty, sex line kind of voice? Well, here's your chance to listen to me. In preparation for the Breast Cancer 3-day, I did a series of interviews on Star 94 FM here in Atlanta. I am their "Breast Cancer correspondent," if there is such a thing. We've been talking about Breast Cancer, life, the 3-day. I even take questions from callers! Come on, you know you're bored.

You can also click here to see the page on the station's website about me. Nothing like putting it all out there, huh?

Monday, October 01, 2007


Sit back, grab a cup of tea - maybe a blankie, and let me tell you a story. No, it's not about drinking til 4 am with crazy dutch cruise ship officers or how my husband used to have his tongue pierced (yes and yes to both, thank you)... this is about a simpler time. A time when we were involved in things that we felt were VERY important. You know, who will go in the limo post prom or why did they light that soccer ball on fire and kick it around?

I'm talking high school, people. And the reason I look back to a young-mc, daisy duke inspired era is because I find the lessons of high school still relevant upon occasion.

Those who know me now might not believe it, but when I was a teen, I didn't drink. Not a drop. I think I liked being the one kid at the party who wasn't trashed, rather than one of the dozens who did. I also was a big fan of activities that would look good on my college application. So my senior year, I was the Vice President of SADD. But I swear, I made sure everyone who left my keggers had a designated driver. I wasn't opposed to the drinking, per se. Everything in moderation.

Needless to say, I was probably the coolest kid in SADD. I don't say that because I'm actually cool, but most of SADD was full of people who actually didn't attend a party... not one I'd want to go to, at least. I was convinced I was going to make SADD more relevant, so the people who actually needed to hear the message would listen. I had big dreams for our little group.

Long story short (I mean it, I swear)... there was an "incident." There was a dance, people showed up possibly drinking, our moderator wouldn't let them in. (Disclaimer: they were friends of mine) But did she call their parents? Call the cops? No, she sent them away... you know, back to their cars. To drive. After she accused them of drinking. Anyone see the problem here?

So I questioned the decision. I went to her and said I had an issue with the message we were sending, that I wanted to have a discussion with the group and its officers about how we handle things. Well, that didn't sit well with our moderator. After "staying up all night thinking about it" (as an adult, I have a serious problem staying up all night for anything high school related) she SENT ME A NOTE during my fifth period English class. In the note? She kicked me out of S.A.D.D. For possibly poisoning the minds of the younger members. For questioning the logic of sending drunks off to drive. Basically, for saying "Why?"

After some tears (you bet your ass I still put that on my college application) and perhaps an angry parent-teacher meeting, my time with S.A.D.D. was over.

What the fuck does this have to do with real life, you say? Jesus, get on with the story.

So recently, in my current role as "little miss breast cancer" I've had the chance to be a part of numerous organizations. I was contacted by a local group, which shall remain nameless - to be a part of their unique way of reaching out to younger women. I was pretty excited about it - after all, it was just up my crazy alley. They were starting to have meetings to discuss their mission, etc. In one of these emails, the founders told me all about how their primary goal was to teach young women self exams, yada yada yada.

Now, I'm pretty knowledgeable on the whole young women thing. I emailed back, saying I was excited to be a part of it and help shape the group. I did want to talk about the BSE - the breast self exam - I wasn't so sure about it. Why, you ask? Well, there's evidence that shows doing self exams doesn't affect survival for young women. Plus, young women have distinct hormonal issues that means they shouldn't be checking once a month... they should be touching themselves up at different times each month, etc. etc. I wanted to talk about getting to know your body more than anything. Or what to do if you find something and a doctor blows you off.

Well, that put a bee in their bonnet. I was told

1. She wasn't a fan of the phrase "touch yourself up." (How they hell they'll get 16 year olds to listen if they don't speak their language, I don't know. I know at 16 I didn't listen to 30 years olds, much less almost 50.)
2. Their goal was teaching the BSE. Period. (never mind the lack of evidence based research that proves their effectiveness. See this link for example.
3. If I couldn't get on board... "If you are comfortable with that, then we would love to have you. If not, we certainly understand and respect everyones' efforts in the fight against this disease and to be honest........if we are all attacking from different angles then I'm sure that they will get the message. We both are extremely positive and motivated people and we feel very strongly about XXX and we want to make sure that everyone involved with XXX supports our mission.

Does this sound familiar? Well, I replied that I just wanted to raise the discussion. Not change necessary, just open it up. (Not even mentioning the average age of the group was about 45... 30 years older than their target audience.)

Well, I never got an email back. I emailed about a meeting. No one responded. I stopped getting all the announcments about getting together. I was shut down, kicked out, black listed, kicked to the curb.

Just like SADD. Just like the moderator who was too emotionally invested to listen to anything other than her view. Just like the small minded students that were out of touch with the people who needed to hear the message. There's me, only I'm 12 years older but just as mouthy. And I still think that asking questions is important.

So I wish this group all the best. I have other organizations to give my time to. That want open an frank discussion. That value people who think outside the box. Who think awareness if more than dressing in pink.

(stepping off soapbox)