A breast cancer diagnosis at age 37 has a few positives, one of which is tending to not put off the things you said you would do before you die. So to celebrate making it to my 50s I decided to get a motorcycle license.
My older brother Ed (Skeeter to me and my siblings), always rode a motorcycle. If I wanted to go somewhere while a young teen, it was on the back of his bike. I remember wishing I had my own, but back then nice girls didn’t ride motorcycles. My mother worried every time he left the house on his bike, but he made it through college with few mishaps. Ironically, Skeeter died in 1972 while co-piloting a helicopter in his last days of Naval Aviator training. A friend sold his motorcycle in Florida where he was stationed, and I never saw it again.
So, it was with many happy flashbacks, and the feeling that I would never ride alone that I got my motorcycle license in 2002—and then bought my bike, a 2000 Yamaha V Star named Suzie— really, her name is painted on the bike. Since my first ride was a fundraiser for Susan G. Komen for the Cure, I thought that was very appropriate.
I know what you’re thinking: “She survived breast cancer and she rides a motorcycle?” My answer: “I ride a motorcycle because I survived breast cancer—getting the message early that life is to be lived.” I ride carefully, like everyone is trying to kill me, and I don’t ride in Dallas traffic if I can help it.
The Amazon Heart ride looked like just the kind of ride I love. Ride, eat, form community, and meet amazing women. I was the oldest rider at 59 and the farthest out from my cancer diagnosis at 22 years, and I planned to enjoy the ride and write a story about a different kind of healing without getting too emotionally involved. It was an impossible wish at the start. How do you get to know people like Megan, Meredith, Michele, Stacy, Alyssa, Blue (Lisa), Marie, Gail, Ginny, Colette, Nancy, Wendy, Andy, Karen, Beth, Anna, Jan, Wanda, and Lisa and not care about every moment of their lives. Come along and meet my sisters.
As soon as I arrived at the hotel, I started meeting women from the ride. It was easy to spot us since we were all carrying motorcycle helmets. We met officially that evening when Meredith, one of the founders of the organization, took out a beautiful hand-carved talking stick made by an Aboriginal friend of hers and gave it to the first woman, explaining that the one holding the talking stick has the floor. As it went around the room we heard from each woman. Of the 19, two are from England, three from Australia, and the rest from eight different U.S. states. We raised more than $40,000 total. Two of the riders have metastatic breast cancer and two, Michele and Colette, learned to ride to take part.
Today we met our ride group—the five bikers that stay together at all costs. We also met our bikes. I say “met” because it’s the only way to describe all of us standing around a parking lot waiting for her bike to roll off the trailer.
"That's mine," each woman shrieked as her bike came down the ramp—except me that is. I was supposed to be on a Road King but they sent a Road Glide—which seemed like a much bigger bike and a lot more bike than I wanted to deal with. But Meredith switched with me, so I got a beautiful Heritage Soft Tail Classic. Meredith also asked me to be the sweep position of the second group of riders, meaning that I bring up the rear and change lanes first to provide safe lane changes for my group. My riding friends in Dallas would get a charge out me being placed in any position to help the group.
As we rode around the parking lot practicing, we all looked a little in shock that we were actually riding these beautiful bikes, and probably everyone was hoping like I was that I didn’t make a fool of myself.
We lined up at around noon to do a practice ride to Hermosa Beach for lunch. Meredith may have spoken too soon when she said we were the best group she had ever had because my group got lost on the way home, arriving an hour after everyone else. There is nothing like getting lost for a bonding experience, and our leader, Nancy Bellen, is a hoot, which makes it even more fun.
Megan assigned our “roomie” for the first night (we had a different one every night), and we all took off to get to know each other and get a good night’s sleep for our first real day on the road.
We left Marina del Ray after decorating the two vans with all kinds of wonderful comments, and, sadly, the names of some of the women we are riding in remembrance.
As one of the few who has a windshield on my bike, I decorated it with "Breast Cancer Survivors Rock" and two pink rhinestone ribbons that I made for those who wanted to “bling” their helmets.
We went south a short distance to have lunch at California Harley-Davidson in Harbor City. They laid out a great lunch and some of their riders showed up to celebrate with us. I bought one of those neck ties that you put in ice water to keep cool since I could already tell that it was going to be warm for much of the ride. Harley-Davidson gave each of us one of their beautiful leather jackets— part of our contract is that we have to keep our arms covered. But as we rode north it was really cool and beautiful. The Pacific Coast Highway is amazing for motorcycles.
As a group we move really well and we get pointers every day from Meredith and Megan about safety.
Usually, the rider is already well aware of her goof, but it’s nice to know that M & M, as we call them, are watching all the time.
We proceeded with no mishaps, except for the guy who changed lanes in front of my group and then braked to turn into a gas station. Nancy, our point rider, slammed on both hand and foot brakes and put down about 15 feet of rubber before stopping so close to him she could see the sweat on her face in his bumper. It was scary, a good reminder to constantly be on watch, and a testament to Nancy’s riding ability.
Nancy was diagnosed at age 32 in 1996. She had a 3-year-old son at the time and had just found out she was pregnant with her second child. In fact it was at her first prenatal visit that the doctor felt something in her breast. To make a long story short, by the time they determined it was breast cancer it had doubled in size. So, as Nancy tells it, "I had a needle biopsy on Monday, scans on Tuesday, terminated my pregnancy on Wednesday, and started chemo on Friday.” She tells it casually, but her eyes say it all.
By the time she finished chemo, there was no cancer left in her breast. They did a lumpectomy and she had radiation. A video producer and photographer, she has three pieces in Art.RageUS:The Art and Outrage of Breast Cancer, a book of art and writing by breast cancer survivors. She has been very active in breast cancer causes and is one of the women responsible for getting a breast care center in Santa Rosa, California.
We began Day Two of the Amazon Heart Thunder ride by waking up most of the other guests at the motel. We are not a quiet group. And then there is Andy. She was diagnosed with what they thought was DCIS, a non-invasive breast cancer, in 2004, but when she ended up with liver metastasis a few years ago, someone decided they had probably made a mistake. She had Herceptin and lots of other chemo and radiation, which has put her in stable remission. So, Andy, who has always had a strong will to live, is living it up. She was the first person I met at the hotel when she was on her way out to go rollerblading!
Ever since then, the crew has learned not to be surprised when Andy strips—she wears a bikini under her riding gear. And she has a bikini body to boot. When we pulled into the motel yesterday, Andy stripped her gear off and hopped into the pool while we were all waiting for room assignments! This morning bright and early while we were getting ready to take off, another biker staying at the hotel made a donation to the group and we told him we wanted a picture, so Andy, of course, took off her shirt and posed in a bikini top.
Andy’s fashion choice sparked envy when we pulled into Santa Barbara today all hot and sweaty. Andy pealed off her riding gear and went swimming in the ocean while the rest of us looked for an air conditioned restaurant.
So, anyone who says women with metastatic cancer can't live life to the fullest, haven't met Andy.
In the parking lot this morning there was also another occurrence that pointed out the impact from this disease.
As we were gearing up to ride, lots of other guests were chatting with us about the group and breast cancer. I sold one of our baseball caps with the Amazon Heart logo to a couple having coffee and we passed out the postcards with a picture of an earlier ride and the title “Reborn to be Wild.” One young man was watching us from the railing outside his door on the second floor of the motel. I hollered up to him to make a donation for gas. He said he didn’t have any money but he wished he could because his mother had died of breast cancer when he was 18.
He then opened his shirt to reveal a full portrait of his mother tattooed on his chest.
Every day we have people come up to us to talk about breast cancer—after they figure out we aren’t the ladies auxiliary of the Hells Angels.
On the road we get frequent thumbs up from other drivers and have had lots of pictures taken. On more than one occasion I have seen pedestrians watch us pass and finally realize we are all women—mouthing “they are all women.” I particularly liked when a mother bent down to tell her daughter, who was 5 or 6, “those are all women.” It’s like we carry a message about living life to the fullest without needing the extra message about having survived breast cancer.
The ride today was magnificent. We went inland a little after we had breakfast at the Harley dealership in Ventura. It was beautiful country and nice weather. After the Santa Barbara stop we went inland again and cut through the Los Padres National Forest up by Cachuma Lake. The twists and turns were enjoyed by all—even the new riders were doing their leans like the pros.
Nancy, my group leader, gives me $2 for every red light she pops, meaning she goes and we stay. From my vantage point as the sweep in the middle group, there are the four in my group ahead of me and then Megan's group in front of ours. Meredith, the Aussie who along with Megan created the program, is behind me along with her sister Suzanne on the back of her bike.
We pulled into the Marriott at about 4 and the group split for showers, the pool, the movie next door, and the bar. Tomorrow it's Highway 101 up through San Luis Obispo to Moonstone Beach in Cambria.
As my buddy Colette says, "You mean we get to do it again tomorrow?" Yep.
Today started at the Marriott in Buellton where the film Sideways was filmed. Every day of the ride we learn more about each other. Last night I interviewed Suzanne, also an Aussie, who it turns out is director of the research division for the Cancer Council Queensland, Australia. The Cancer Council is comparable to our American Cancer Society. Suzanne had, ironically, done research before her sister was diagnosed with breast cancer on how young women feel isolated, so when Meredith and Megan began designing the Amazon Heart program they enlisted Suzanne's research to look at what young women need. Her research showed that young women need peer support, which is harder to find than for older women—thus the ride. But the ride is much more than that—it’s challenging yourself at a time when you need to know you can live. And there is nothing like traversing winding roads on a motorcycle to get your mind off having had cancer. And if you want to feel alive, get off a motorcycle after spending a day on twisty roads in the mountains and then driving along the ocean.
We are now at a great little beachside hotel called the Fireside Inn on Moonstone Beach in Cambria. After a lovely wine and cheese gathering, we had dinner on the beach.
Tomorrow it's Highway 1 along the coast all the way to Monterey. Hope it's clear. On a motorcycle you are totally at the mercy of the weather. If it's warm, it's great, but if it's cold and you are on a bike, the cold is intensified by the speed.
Gail, who rides in front of me, has done a good impersonation of the old television show The Flying Nun a few times when the wind got under her helmet. All of a sudden she grabs her helmet and shoves it down on her head as she settles her butt back in the seat.
The cross winds have been a bit of a challenge for her too. This is one place that being a little bigger has come in handy. It’s harder to blow me off the road than Jan, who rides in front of me and is tiny. Nancy rides in front. Colette rides on her right and then Jan rides to Colette’s left and then Gail and then me. It’s a staggered line that is the correct way to ride. We even got a honk and wave from a motorcycle state patrol yesterday. Megan says they often check the formation to see if we are riding safely.
It's hard to believe that each day of this adventure gets better. We had a beautiful dinner last night by the ocean on a spit of land high above the waves and rocks. After dinner, Meredith introduced our mascot for this ride, a stuffed dog wearing Harley leather by the name of Sprocket. We each signed him, and at the end of the ride he will go home with the woman who we determine needs to take the spirit of the group with her.
My roommate last night was an old timer with Amazon Heart. Stacy, from the San Francisco Bay Area, rode her own bike on the trip. She is a psych nurse and told me that her colleagues helped her with her diagnosis and she never really thought she had any issues until she came on the first ride. She, unlike most women, was already living life to the fullest and felt like a breast cancer diagnosis was going to make her old before her time.
In 2004 on her first ride she made some great friends. One was Laurie, who was from Michigan. She and Stacy both collected shot glasses and when the ride was over they would send them to each other from their various travels. Laurie's cancer recurred in 2005 and she died in 2007. Stacy was baffled when Laurie’s father called to tell her they were delivering something Laurie had willed her.
Stacy thought it was Laurie’s shot glass collection, so she was really surprised to find out it was Laurie’s 2005 Harley Softail Deluxe. Stacy says Laurie wrote to her about riding the new bike and having a great time, but when they rolled it off the truck, Stacy says it broke her heart to see it only had nine miles on it. Laurie had never gotten to ride it. Stacy is riding Laurie’s bike this week—she keeps the passenger pegs down all the time, "for Laurie," she told me. "She rides with me."
This morning I walked across the street to one of the many points that give a beautiful view of the ocean. I sat and watched the majestic waves wash up on the rocks and reflected on the women I have known who have died of this disease: my mom, Judy, Marilyn, Carolyn, Theresa, Nancy, LeeAnn, Karen…whoa. Can't do that, too many. At one point, I remember swearing off breast cancer survivors as friends. I just couldn’t face losing another one.
When Karen Greene and I became friends through Gilda’s Club a few years ago we talked about the fact that her diagnosis of triple negative breast cancer with 20 positive nodes did not bode well for a long future. But she had taken part in a clinical trial for a vaccine and we both hoped that “this was it.” This was the miracle. When Karen celebrated five years of survivorship, it was a huge milestone. The docs told her to expect to live two years. Karen made it seven. Her cancer came back in 2006 and she died in April of 2007. Her spirit has been with me a lot lately.
After some time alone with the ocean, I got back to the parking lot in time to stow my gear for the morning briefing. It’s hard to miss when it’s time to gather since Meredith calls us by shouting OI!!! (pronounced ooooeeee—and cannot be done justice in print). This must be an Aussie thing, but don't be surprised if you hear me doing it when I get home.
Today our ride wasn't very far, but we had some fun stops and a few (did I say few?) curves as we traveled up Highway 1 to Monterey. After a stop at Hearst Castle and to check out some sea lions we did the twists and turns of Highway 1 right along the ocean. The views were spectacular—to the extent I took my eyes off the curves and Jan's and Gail's tail lights to look at them.
We stopped in Big Sur for lunch and then on to Monterey. No problems today, but I won't have to exfoliate for a while after a sand truck passed us. Whew! Can sand feel like boulders when they hit your face! Maybe a full-faced helmet is a good idea after all.
Tonight we are all on our own. Some of the crew, all of whom are younger than me, are going into Monterey. I, on the other hand, am going to crawl in bed and get some alone time.
Another remarkable day on the bike. We set off this morning from Monterey and it was cold. Getting on a motorcycle when it's cold out is not fun. My roomie last night was Alyssa, a beautiful and soft-spoken woman from eastern Oregon. She looks like her name: big eyes and dark wavy hair. It's hard to believe she has three kids ages 12, 9, and 6. Alyssa was diagnosed with breast cancer at age 29, three years ago and had everything removed: ovaries, breasts, etc.
This was another loss for Alyssa, who lost both her parents before she was 6. She lost her father when he was 29 to colon cancer and her mother the next year in a car accident. The aunts on both sides of the family divvied up the kids. Alyssa says that at 6 she remembers trying to be good and not causing anyone any problems. What a huge loss for one so young.
Breast cancer was a wake-up call for Alyssa—she and her husband started a construction company the year after they married when she was 19. They have worked seven days a week since then. Alyssa says breast cancer made her realize she needed to take time for herself, and when she read the bios on www.amazonheart.org it was the first time she heard women say things that she felt. She got her own bike last year after riding on the back of her husband's for years.
We stopped for lunch at the Harley dealership and then took off inland to ride through the red woods. It was 40 miles of hairpin turns and curves. Wow. And then, as I was riding along really enjoying the light speckled road and the smells of the forest, a damned bee had the audacity to fly up my left sleeve. I felt it immediately and, not knowing what it was, tried to kill it by beating my arm against my side without losing control of the bike. That made the little sucker mad and it stung me twice so I finally had to pull over. I must have looked kind of funny jumping off my bike and starting to strip like I was on fire. Stacy stopped with me and so did the van.
I was screaming and hollering because it REALLY hurt. Finally, I could see that I just needed to get on with it. Stacy and I got back on the road and followed the directions trying to catch up. At one point I thought we had taken the wrong road because the curves we had been doing looked like a straight away compared to what we were riding. We caught up with the group and stopped for gas and to assess everyone’s assorted bites and nerves. Seems another bee ended up in Colette’s helmet and she had to stop, which was when Gail noticed I wasn’t there, so she stopped with Colette.
Meredith must have decided something was catching with two people out from the middle group because she stopped her group to see what was up. Colette got the bee out of her bonnet so to speak and they took off again.
Megan has taken that stretch of road off for next year’s ride.
Luckily, we had Beth, the doctor on the ride, in one of the vans. She pulled out a lymphedema sleeve for my arm and I took some meds to keep it from swelling.
We got to Stanford University and Palo Alto about two hours ago, and I continue to marvel at the hotels Megan found for the ride. The Westin is beautiful and the beds are so comfortable (do you detect a note of sleep deprivation here?). Karen, a rider from Pennsylvania and my roomie for the night, took off for a hike, and I just finished hanging out at the pool with everyone and am now ready to go to bed. Tomorrow is another riding day.
Every day, another rider drops her passenger pegs for someone she knows who has died of breast cancer. Tomorrow I will drop mine for my mom, Karen, and all the other women I know who have died from this heinous disease.
The ocean, then windy hairpin curves inland, then beautiful redwoods that covered the whole road, then lush fields, then acres of hilly grape vines. It’s hard to decide what has been the most spectacular scenery in the past two days. Every day we test ourselves against the bike and the terrain as we master new skills and challenge ourselves more.
In the evening we sit by the pool or go to dinner or gather in groups of three or four to talk and laugh and talk and laugh some more. The result is a closeness born of a common bond. The ground rules at the beginning of the ride were simple. 1. Don’t fall off the bike 2. Respect each person’s individual journey and expression of that journey. 3. Don't fall off the bike.
From the quiet to the expressive, single and married— we are each so different. We come from England, New York, Maryland, Pennsylvania, Oregon, Australia, Texas, Oklahoma, California, but we are part of the common scar of breast cancer across this country and the world.
Getting ready to ride, Karen braided Michele’s long hair. Colette lined up to have hers braided as well. Of course, Colette has no hair.
I got Sprocket today for making the group laugh last night when I did my one-woman show, One Mutant Cell, for them. It was fun but very scary. I already really care what these women think and know that there are a few who will not make it through this disease—and it may not be the ones who are here with metastatic disease. It was hard to make eye contact as I told my story, knowing it was also theirs. And knowing that with time, I have traversed some parts of the journey that they have yet to encounter.
Meredith told me that of all the women taking part in all the Amazon Heart adventures, 13 have died.
It’s amazing how protective I feel of “my group.” My job as sweep means I stop for anyone in my group who needs to stop for any reason.
I was feeling brave today and stopped traffic so the whole group could go at a stop sign. Of course, then I had to get back to my position by passing everyone, which Meredith pointed out at our daily riding discussion was why the final sweep did that sort of thing. OK, my bad, but it was fun.
To give you an example of how connected we get, today there was a pickup truck in the left lane and he had tied his load on in a very haphazard way. One piece of plywood had a cord across it that had slipped to the edge. Only another inch or so and it would have flown right out of the back of the truck onto us.
I could see it most clearly and got beside the driver and honked and pointed. He slowed and then sped up again so I did it again. This time he got it and pulled off. I was so angry that his carelessness could have cost one of us our life.
Tomorrow we pull into Crissy Field in San Francisco after riding the grape fields of Napa Valley today. But right now all I want is a shower.
Last night we had our final gathering and a pizza dinner after we pulled into Rohnert. I had the office send a box of CURE magazines and passed them out as party favors. First we each received a beautiful message stick from Meredith and Megan. This is hand carved and painted by an Aborigine in Australia and its significance is that when traveling from one place to another these carved sticks tell one group about the traveler. It's like a passport. Then Meredith pulled out the talking stick that she passed around the first night—which seems like years ago—and we all talked about the week. As could be expected there were lots of tears. How can you only spend a week with a group of women and feel like you would drop everything and go if they needed you?
When it came time for me to talk, I had a hard time.
For me it was an admission that I had come on this ride more as a journalist who didn't plan to get involved but to ride some pretty country. I have lost enough friends to this disease and I had planned to shield myself from caring about any of them.
Well, it didn't work. I love these women and care deeply what happens to them. In fact, if you remember Alyssa, the beautiful young woman who was diagnosed at 29 who lost her parents early in life—I figured out I am about the age her mother would have been had she lived, and have told her I want to adopt her.
Today it was the ride into San Francisco. But before we left the hotel, each woman told who it was she dropped her passenger pegs for. Michele pulled out a list of her supporters and survivors from Oklahoma—and those who have died. She had it in her inside pocket for the whole ride. I said I rode for my mom and my brother, who died in a helicopter crash when he was 24. It was on the back of his bike that I began to love motorcycles. Other women dropped their pegs for friends who had died and gave their story. Meredith said she looks at the hole in our formation right in front of her like the riderless horse. It's the spot in the formation for the women who have died since being on Amazon Heart events.
We finally got on the bikes for the final day. We did more twisty roads, and stopped at Sonoma to shop—finally, I had to hurry to fit it all in—for a while and then rode to the top of the Marin Headlands high above the Golden Gate Bridge.
We were quite the favorite of the Asian and Indian tourists, particularly when Meredith began the group’s rendition of "I Will Survive," which has become our theme song.
There we were, gathered in the pull off above the Golden Gate Bridge in our leathers and a little more weather-beaten than when we began, singing at the top of our lungs and hugging each other.
We said good bye before riding across the bridge and into Crissy Field in the shadow of the Golden Gate Bridge where a big Harley-Davidson van was waiting to take our bikes back. What? You mean we don’t get to keep them?
I was surprised how emotional it was for me. But we all sat there on our bikes—reluctant to get off and give them over to the Harley folks.
Blue, whose real name is Lisa, helped each of us cut the rider’s guardian bell that Gail gave each of us to attach to the underside of the bike on our first day. This bell, it’s said, scares off all the little road demons and spirits that make it hard for riders.
A little more about Blue. You know hair is a big deal for breast cancer survivors. We lose it, we are bald, it comes back different, we may lose it again, or we may be bald the rest of our lives (as it appears Colette will be). Lisa decided to pay homage to this issue by dying her hair bright (did I say bright?) blue for the ride. It was great.
So here I am in San Fran ready to go party with 10 of the riders still here.
Well, I am home, but it feels very strange. I knew I wasn’t yet adjusted when, on the way to work today, I took off with the car in front of me at a stop sign – just like we did on the ride when each group moved off stop signs together. The guy in the other car looked at me like I was nuts. Sorry, still on the bike.
The last night in San Francisco we had a great dinner together and then riders peeled off for the airport or to their hotel. Andy, Jan, and I shared a room and found a great little shop of fun tops on the way to dinner. Andy had talked the woman down on one leatherette jacket and the shop owner said she would stay open until we came back to shop.
I found Alyssa and dragged her back to the store and explained that no mother-daughter relationship was complete until they had gone shopping together, and I had picked out a top for her that I really liked. All week Alyssa had worn the cutest tops of lace or colorful cottons, and when we stopped I saw a white top that looked just like her.
We laughed on the way there as I explained that with my daughter Kirtley, I always said, “Your limit is...” Well, she loved the top and I got it for her. I walked her part way to her hotel and we talked about her family. I will always thank Amazon Heart for introducing me to this beautiful young woman.
The hotel clerk suggested we leave the hotel at 6 a.m. for 9:30 flights because they were closing the Embarcadero for the Hells Angels Funeral. For a second I thought Andy would choose the funeral over going home, but she didn’t.
Andy was the one that the group decided should take Sprocket home with her. Over the week Andy had come to represent lots of freedom and living for many of us. And she never talked about her own situation, a liver metastasis that was being kept at bay with radiation. She will go home to her job this week as a home care provider for those who cannot care for themselves.
Andy was comfortable living out loud, and I, for one, hope I can do the same thing for as long as I live.