The speech for OCNA

I'm now back from Washington. Some of you have asked to see the text of my speech. Okey doke. Here it is:

Remarks for OCNA by Laurey Masterton
July 8, 2009

To start with, let me say that the last time I was here, speaking to a group of ovarian cancer survivors, I had two minutes on the program. I was preparing to embark on a big adventure. I did not know if I could accomplish what I had been dreaming about doing. I did not know.

I live in Asheville, North Carolina where I own Laurey’s. Laurey’s is a catering company and also a café (coming to Asheville? Come see me.)

I am a 20 year ovarian cancer survivor. Okay – truth. I’m now a 21 year survivor. I’m also now a 30 year uterine cancer survivor.

Last year I turned 54. I was born in 1954. That means that last year was my Golden Year. I’m big on symbols and I’m big on finding the meaning in things. I googled “Golden Year” and read that one might feel compelled to do something significant in one’s Golden Year. I like doing things that are significant.

For my birthday, when I turned 54, I gave myself a one week long bike ride on the Outer Banks of North Carolina. And on May 14th , on my actual birthday, I decided to take a bigger step. I decided to do a longer ride – I decided to ride my bike all the way across the United States. And, realizing right around then that that was my 20th anniversary of surviving ovarian cancer, I decided to try to make my ride a fund and awareness raiser – for ovarian cancer.

The hard part started pretty quickly. How would I get in shape for a huge event like that? How could I leave my business for over two months? How would I pay for the ride itself? Could I raise a significant amount of money to donate? Who would take care of my house? My dog? My cat? And what organization could I work with? Where might the money go?

I wandered around, trying to find the right group, and finally, in late August, I connected with OCNA, with the help of some of my chef colleagues at Women Chefs and Restaurateurs. We had a conference call which is when I met Karen Orloff Kaplan, Executive Director and Faryl Greller, Director of Public Relations for OCNA. I really was still stumbling along at that point. I mean, it all seemed like a good idea but that was as far as I had gotten.

But Karen, talking on the phone with me on that day in late August, asked if I knew the significance of being a long term ovarian cancer survivor. “Well, I guess I do,” I mumbled. “No,” she insisted, “Do you have any idea how remarkable that is? Twenty years is a long time. You are in a very small club.”

And she started naming the long term survivors she knew.

I was floored. She knew their names. Their individual names. In that instant I knew that this ride was more important than ever. I had somehow managed to live for this long. And now it was time to take it to the next level, to do something very significant, and to help spread the word that it is possible to survive. And more than just being a living example of survivorship, I wanted to help spread the word farther. The word about those early warning signs ( I had early warning signs.) The word about early detection (I was miraculously diagnosed in stage 1 – two times). Yes, I wanted to help OCNA spread these messages. It seemed like a perfect fit.

I started writing fundraising letters. I started training. I found a house sitter. My staff told me they’d step up and take care of my business while I was gone. My sisters and our local hospital offered to help fund my portion of the ride. It started to work.

So by now you know that I did the ride. Frankly, it wouldn’t be much of a story and I wouldn’t be much of a closing speaker if I had NOT done it, right? It was very hard. Very. The journey across the United States WAS significant. Very.

Just so you know, it was also a lot of fun. I met 21 other women who were riding for their own reasons. We ranged in age from 42 to 70. We had many levels of fitness. We rode for 48 out of 58 days. Over 3100 miles. We rode through California starting out in San Diego. We rode into and across Arizona, New Mexico, Texas (and Texas and Texas and more of Texas) and then through Louisiana, Mississippi and Alabama and then across the panhandle of Florida all the way to St. Augustine. The Pacific to the Atlantic.

We got to eat like crazy. We got to spend our entire days doing nothing but getting ready to ride, riding, recovering from the day’s ride and getting ready for the next day’s ride. That is a heck of a way to spend time, my friends.

But it was much more than that, of course. I’d like to tell you about three especially memorable days on this long ride.

The first was the day we climbed to the highest point on our ride. We rode from Silver City, New Mexico up and over the Continental Divide, and up and over Emory Pass, over 8,200’. We climbed 5,000’ that day and finished in Kingston, New Mexico. The up was really long and really hard. At one point I think we rode for 12 miles. Up. I mostly rode with my new friend Connie who is an insulin dependent diabetic. She stopped every hour to check her insulin levels. I waited for her, which was not merely an altruistic move on my part. I was beat and stopping was mandatory for me too, not just for her.

At the top of Emory Pass, after congratulating ourselves and jumping around with glee at having crested the highest part of the ride (“It’s all downhill from here, right?”) we had a ten-mile screaming descent. What a blast! Ten miles of steep curves, through a magnificent forest and on to an old lodge where a real Thanksgiving dinner got cooked and spread out for us. Did you remember I told you about eating? That was a fine meal. Memorable. Yes, hard going up. But what a blast of a downhill romp.

The second memorable day was the day that I was careless and did a foolish thing by trying not to make my ride buddies stop and wait for me. I wrecked my bike when I dropped an arm warmer into my rear derailleur and very nearly wrecked myself. I lost 9 miles of riding that day, but found a deep pool of support among my riding friends, one of whom loaned me her bike. And Michael, the boyfriend of another rider happened to be visiting and he ended up spending his whole day taking my wrecked bike to be fixed. While I was switching bikes and patching my cuts, my friends rode on. But when Michael dropped me off a little bit later, my friends waited for me and administered soothing words and more ibuprofin and made sure I was okay before we all took off. I could say a lot about that day, but the third day matters more this afternoon.

That third day was the longest day for us. 111 miles. Sanderson to Del Rio, Texas. We knew it was going to be hard. It was hard. Very hard. And long. Very long. We started riding just before the sun came up. We begged our guides “PLEASE let us start!” and they, anxiously looking at the horizon, looking for a glimpse of light, finally let us go. We rode the first mile at the crack of dawn. (Um, we called it, irreverently, the butt crack of dawn…)

The first 30 miles were easy. We had a gentle downhill. We had smooth roads. We saw beautiful rocky buttes and gorgeous turquoise dawn skies. The sun came up as we were gliding down a perfect road. Connie stretched out her arms and seemed to soar. We did too. “Look Ma! No hands!!” (Not bad for me and my 60+ year old friends.) Nothing could stop us. This day was off to a fine start and I felt certain that I would ride every mile.

But at mile 31 the wind picked up. The calm morning turned breezy and that breeze came right into our faces. We entered a new county. Each county, we discovered, is responsible for its own road maintenance and the one we entered was wealthier than the one we left - which meant that the road surface became “chip seal.” We’d heard about Chip Seal. Chip seal describes a road surface wherein gravel is poured onto a smooth road and the smallest amount of sealer is sprayed on top to stick the gravel on. Chip seal lasts a long time. And chip seal is expensive. Poor counties have smooth roads. Richer ones have chip seal. Chip Seal is horrible as a biking surface. Imagine riding on an old-fashioned washboard. For a whole day.

The breeze became a wind. The chip seal got rougher. The map, which indicated a downhill trend, was deceptive. With the chip seal’s friction and the wind, by now a 20+ mile an hour headwind, moving forward meant that we had to work hard even on a steep downhill. And a downhill trend is NOT the same as a steep downhill. It was, to put it mildly, a slog.

At lunch a number of riders quit for the day, loading up their bikes and getting into the SAG (support and gear) vehicle. Connie and I and Jan and Sherry and Lois and Marci kept going. Everyone else got into the van.

I wanted to get into the van. My feet ached. My arms ached. My neck ached. My butt ached. The chip seal’s vibration meant that I was also numb in all those places. Not fun.

But I kept riding. After all, I pointed out to myself, I was not undergoing chemo therapy. And I was not hearing a diagnosis for the first time. And I was not, like a little 4 year old friend of mine in Asheville, undergoing a bone-marrow transplant. I kept riding.

The wind got stronger. SAG breaks got more frequent. Instead of stopping every 20 miles, we stopped every 10 miles. Sherry and Connie got a burst of speed and took off. Marci went with them. Lois slowed down and decided to stop at mile 100, making the day a personal best for her.

I wanted to stop at mile 100. But I kept riding.

Jan and I stuck with each other. She’s 65 and was doing the ride to prove to herself, simply, that she could. We stopped, at that point, every 5 miles, ate something, drank something, peed. Got back on and kept riding.

“Surely you know you can do this,” an inner voice began repeating. “Keep going. Keep riding. Do not quit. Keep going.”

Those last 11 miles were the hardest riding I have ever done. I wanted to stop at the end of every mile. I wanted to stop with every single pedal stroke. Ann, our SAG drive, took every extra thing we might have been carrying. I gave up my water bottle, my spare tire, my jacket. And I kept riding. The wind did not stop. The road did not get any smoother.

Jan and I were the last ones out on the route that day. Three miles before the finish I lost her in the dusk. But it didn’t seem right to finish without her so I waited. She finally caught up, having had trouble with her chain. We rode in together. It was so dark we could hardly see the motel sign. We had been riding for 12 ½ hours. We held hands and rode those last yards together. And we both completely lost it when we finished, collapsing into the arms of our friends who had ridden, one way or another, to the finish of the day.

Many of you know about days like this even if you do not ride a bicycle. Since I’ve been home I’ve had days like this. It has been really hard coming home. I loved being on that ride. And I have not had an easy re-entry.

But those difficult re-entry days, those days that YOU know about, of chemo or of sitting in a doctor’s office waiting to hear a diagnosis or of hearing a diagnosis and wondering how you are ever going to make it through - are real. It’s a matter of getting through them. A matter of seeing if you can find something positive in the midst of something so challenging, so unbearable. It’s a matter, most of all, of not giving up.

Doing that ride, for me and for you and for women and men out in the world, WAS a significant event for me. A lot of people kept up with me on my blog and told me how inspirational I was to them. And I kept a lot of you in my heart and want you to know how inspirational you were to me. And, by the way, how inspirational you are, still, to me, as I stand up here and chirp about riding across the United States.

Riding across the United States is nothing compared to the challenge we have here. The challenge to get through the next chemo or the next conversation with the doctor or the next conversation with our elected officials. Riding across the United States is nothing compared to trying to catch President Obama’s attention to ask him to move this cause up to the top of the list, or at least higher up on the list. Maybe it helps that his mother died of ovarian cancer. It’s an awful thing. But I hope it helps.

And yes, by the way I raised a bunch of money. I have a check for OCNA and in a minute I’d like Karen and Faryl to come up here so I can give it to them.

And then I’d like to show you a little video I made. The fellow who did all the work is a friend of mine and his mother died of ovarian cancer. The editing and production was a gift to me – and to you. My sweet girlfriend Annie made postcards for me to send to the folks who donated to my ride. I have sent out almost 300 of them to the folks who helped me raise the money I’m about to give OCNA. People pulled money out of their wallets to give to me. People gave me things all along the way. Just as you have by having me here today.

So thank you for having me come and speak. Thanks to the women I have met who are longer term survivors than me. You inspire me. I only hope that I can be that kind of an inspiration for some of you who are younger in your survivorship.

Keep it up. Life is a grand thing. It is filled with love and that makes it all worth living for, now doesn’t it?

Karen? Faryl?

And, cue video.