I was invited to be the keynote speaker at Los Robles Hospital Breast Cancer Seminar on October 19, 2013. To a crowd of 300 who attended the seminar, I told my story. Here it is.
“I am a warrior. I am not a statistic.”
Thank you for inviting me to participate in this wonderful conference, that provides support and encouragement for so many of us. October will always be an extraordinary month for me, since I received my own diagnosis of breast cancer on October 20 two years ago. I can’t say that I specifically planned it so that my breast cancer was announced during BC awareness month, but it sure makes it easy to remember. As though anyone could forget!
I’m very humbled and honored to have this opportunity to share my own rodeo with breast cancer. I was here last year when Joni Eareckson Tada spoke about her breast cancer experience, and I was just beginning to grown in fuzzy, gray chemo curls, and I’d had my unilateral mastectomy just a few months before, so I was just learning how to manage the feeling that I was carrying around a silicone ham in my bra. She left me feeling inspired, energized, and ready to find a greater measure of grace in my own battle. I sincerely hope I can do the same for you.
I need to tell you the story of why I’m standing here instead of Angelina Jolie. I had became friends with our wonderful breast cancer nurse navigator, Cathy Cole, and several months ago we were chatting about a celebrity speaker for this seminar. She mentioned Angelina Jolie, and I thought it was a great idea. A beautiful movie star, who not only was brave enough to undergo a preventive double mastectomy due to her genetic predisposition for the development of breast cancer, but to go public with the event —what a great way to empower other women to think about their own health! So I was having fun at the beach with Angie (I call her Angie, since we’re such close friends) and asked her to be our speaker today. She said she’d love to but today’s the day she and Brad take the kids to Costco for the samples. So when I broke the news to Cathy Cole, she said, “OK, well, you’re it.” So here I am!
I’ve spent a lot of time thinking about what I could possible share with you that would be inspiring or educational when it comes to breast cancer. I consider myself to be a pretty ordinary person, and my journey through cancer-land has not been particularly unique, with the exception of the fact that I’ve had a world-class reporter and photographer following me around telling stories and taking pictures of my breast. I’m a celebrity only in the eyes of my family and friends, just like all of you. So it’s the ordinary woman’s experience with breast cancer that will get told today.
Here’s where it started. I hope you all brought a sack lunch, because we’re going to be here a long time! This is me in 1956. My breast cancer probably has its roots somewhere somewhere in my genetic background, even though I’ve been tested for the breast cancer gene and I’m negative. My mother had two mastectomies, one in her sixties and another in her seventies.
My sister was diagnosed with breast cancer just nine months after my own diagnosis. This can’t be just coincidental, but right now, we don’t have the science to track all the genetic hocus-pocus that contributed to our cancers.
I grew up, got married, became a nurse, joined the Air Force, and got pregnant. Back then, ultrasounds were very primitive and just beginning to be used for obstetrical assessments, so the OB clinic at my Air Force hospital was very proud to have just purchased one when I was just thirteen weeks pregnant and had began popping out of my uniform. The chief obstetrician was a friend, and he invited me into the clinic to use the new ultrasound to watch the baby swim around. So we found the baby and marveled at its little shrimpiness, and then…another little shrimp swam into view. We were having twins! This actually is another important event in my breast cancer history, because (don’t listen, boys) I breastfed them until they were old enough to unbutton my blouse when they were hungry. Research has shown that women who breastfeed have a reduced chance of a breast cancer diagnosis, but clearly, statistics don’t represent every woman’s story.
Our beautiful young family in 1986. You can tell by the hairdo and the fact that everyone was wearing sneakers. By this time I was working again in the emergency department just a couple of shifts a week. This was in Denver, and we frequently drove by one of the hospitals where air medical transport began, and every time I saw that beautiful helicopter parked on the hospital pad, I thought “someday I’ll do that.”
And here I am, doing the job of my dreams. I started flying air medical transports in Denver in 1992, and when we moved to California in 1997, I was hired by Mercy Air, a private air ambulance, to establish and run a base in Oxnard. This base has since moved and I’m currently working for the County of Ventura, managing the trauma system, which is purely administrative, but I kept flying part-time until a couple of months before my cancer diagnosis.
I feel very blessed to have been given the opportunity to be a flight nurse for almost twenty years. It was one of the best jobs on the planet. We did 24-hour shifts, like firefighters, and almost every flight required a high level of creative thinking, the ability to deal with the unexpected, and trust in my crew, which consisted of a pilot, a paramedic, and a nurse. I like doctors, I really do—I even gave birth to one—but in my own limited experience, having a physician on a helicopter is a bad idea. They either get air sick, or they want to do doctory stuff and cut holes in things, which really amps up the paperwork. As a flight nurse, I had the training and independence to do whatever it took to get my patients to the hospital alive. I loved the autonomy, and I loved the fact that on what might be somebody’s worst day ever, I could make a difference in their life. So why did I move on?
Man, I was just getting too old for this kind of thing! This was probably the worst shift I ever experienced. We finally gave up trying to clean all the blood out of the helicopter on the hospital helipad and flew the whole mess back to the base to use a garden hose and rinse it down. I spent so long bent over, cleaning, that I hurt my back and had to go home early. I crawled into bed and woke up the next morning with my husband running around with a pocketful of 9V batteries. “I’ve changed the battery in every smoke detector in this house, and one of them is still beeping!” he said, all frustrated. Well, I had accidentally brought the flight pager home in my flight suit pocket and it had been beeping all night.
I didn’t mind flying all day, but flying all day AND all night meant I needed about a week to recover, and being the world’s oldest flight nurse, I was always partnered with paramedics who were younger than my kids. When the bat-phone rang, especially at night, they bounced out to the helicopter, radios flapping, swinging bags that weighed fifty pounds, and were strapped in, dialing in the frequencies, and tapping their watches before I could remember where I was and get my flight suit zipped. It became a joke among the pilots that I could fall asleep in the back of the helicopter before we reached the end of the runway, like a baby in a carseat. I miss flight nursing, but I console myself with the fact that as a flight nurse I was helping just one patient at a time—with my job of helping our county’s trauma system function at it’s best capacity, I can help thousands of patients who need access to state-of-the-art trauma care.
So this brings us up to Friday, September 29, 2011. I was getting ready for work and just got out of the shower, and although I don’t spend a lot of time looking at my naked self, I happened to glance at myself in the bathroom mirror. There was a pinkish-red area on my left breast about the size of a silver dollar. I initially thought it was a bug bite, but when I looked at it with a magnifying mirror, I could see the orange-peel texture that is occasionally associated with breast cancer. But you know…it took a few moments for this to sink in. It’s probably the same for women who find a lump. At first it was “what’s that?” And then my heart froze, my throat closed up, I dropped the mirror, and ran into my closet to hide. I stood there gasping and realized my breast had followed me in there. At that point in time, I was certain it was breast cancer, and that my life had suddenly become a lot shorter. I was going to miss so much…retirement with Jerry, some professional goals, grandchildren. I even asked my husband to crank up my life insurance before I visited my doctor on Monday morning.
But when Monday rolled around, I was no longer hot from the shower and the red spot had faded into the rest of the skin on my breast. I had done the denial-thing in my brain and reasoned I was just being “that nurse” who gets a nosebleed and diagnoses herself with the Ebola virus. Even my gynecologist couldn’t see anything, but she said something that probably saved my life. She said, “YOU saw something, so we’re going to follow up,” and made appointments for a diagnostic mammogram and ultrasound. I’d had a normal mammogram in June, just three months prior, but I remembered how scared I’d been and decided to just humor myself and go along with yet another exam.
Anytime a technician tells you “we need more films to get a closer look,” it’s a bad sign. We flattened my poor breast so many times that day I thought I’d have to buy a new bra, shaped like a frisbee. And look…there’s a suspicious little tic-tac in there. So it was on to the ultrasound, where the radiologist and technician huddled over the screen and muttered, taking measurements. We need to do a biopsy. The fright factor is going up a little, but I’ve lived a very uneventful life, medically speaking. As a mountain biker, I get beat up once in a while, but breast cancer is something that happens to other women.
It took a few days to get a biopsy on the books, and it was here that it occurred to me that it was October—breast cancer month!—and that there might be women who would benefit from my real-time experience. It just felt like a “nurse thing” to do. So as it happened, Kim Lamb Gregory is an old high-school friend and also a crackerjack reporter for the Ventura County Star, so I shot her an email with a formal invitation to attend the event of my breast biopsy. I can’t imagine what the conversation must have been like, but Kim pitched the idea to her editor and it was a go.
Kim brought Karen Loberg, the best photographer on the planet, and they covered every move of my needle biopsy. And yes, it was a little weird having a reporter and photographer documenting me taking off my clothes and putting on one of those ridiculous gowns and holding still while the radiologist stabbed my breast with what felt like a sharp pencil, but it also gave the process a little more distinction for me. I was doing this, not just for myself, but for the big “US” – the women who would need breast biopsies after mine, and who were as scared as I was.
Do you remember that I had changed mental gears into cancer-denial mode? Well, that was still firmly in place for the biopsy. I was convinced that my biopsy would be in the 80% of breast biopsies that are NOT breast cancer, and that this experience was just a scare from which I would walk away, with relief, and get on with my life.
Two days later, I found out I was wrong.
I found out that it’s impossible to “unhear” the words, “you have breast cancer.” In the span of a phone call, my life changed forever. I’ve been a nurse for thirty-five years, and if I’d been having a heart attack or a baby, or needed to apply a tourniquet in the back of a helicopter, I would have known all about it. But breast cancer? I knew it was not good, and that women went bald, but that was pretty much it. I was about to get an education.
And here’s where I started—there are all kinds of breast cancer. It’s not just one disease. Different breast cancers are treated many different ways, and a lot depends on the size of the tumor and whether or not malignant cells have moved to the lymph nodes in the armpit. The ultrasound I’d had done showed my lump to be about the size of a pea—a little one—and very close to the surface, so I spoke with my surgeon, Dr. Maggie Kademian, and we came up with a plan for me to come over to her office after work, we’d both have a stiff shot of tequila, and she’d just scoop it out with a melon baller. OK, I’m kidding. We scheduled a lumpectomy, with a biopsy of the lymph node in the armpit that’s first in line for the lymphatic drainage of the breast.
It’s hard to describe waking up from surgery in the recovery room, because it was one of the worst experiences of my life. Jerry was right next to me, holding my hand, and as soon as I could speak, I asked “what did they find?” He looked so sad when he told me they’d found cancer in my lymph nodes. Because of the anesthesia I kept drifting back to sleep and waking up to ask him again, hoping it had been a bad dream. It was not. I couldn’t stop crying. With this news, we stepped into a new world of cancer treatment, one that involved chemotherapy and radiation treatments and surgeries. Breast cancer had just given us another plot twist.
For a week after the lumpectomy, I was just carrying the information that there had been cancer found in the lymphatic system under my arm. I prayed all week that this meant ONE lymph node! Soon I was back in Dr. Kademian’s office for a post-op check, and being new to this whole fandango, I didn’t know she would have the pathology report for me, so I had just popped into her office after work. When she asked if Jerry was with me, I knew we were about to have a serious conversation. She gently broke the news that I had six lymph nodes in my armpit that had been invaded by malignancy. I had Stage III breast cancer.
I felt like I was drowning. I couldn’t breathe. A haze of disbelief and fear and grief settled over me and I found my way to the car and drove home to break this news to Jerry. I cried and cried, and he held me and spoke the words that he’s said so many times since, “We’re going to be OK. We’re going to be fine. We will get through this.”
By this time I had learned that breast cancer is treated by a huge team of very smart people. I had already made friends with a diagnostic radiologist, Dr. Craig Inouye at the Nancy Reagan Breast Center, and a surgeon, Dr. Maggie Kademian. Soon I met a medical oncologist, Dr. Anita Kaul, whose background is in molecular biology. She is so smart, I don’t know how she has room left in her brain for the information needed to tie her shoes in the morning. Dr. Kaul navigated us through the next events of what was becoming a breast cancer rodeo.
My first chemo treatment was just before Christmas, and I have to say, the anticipation of chemotherapy and all that it involves was worse than the reality of it. I was never nauseated for even a moment, because of the newer anti-nausea drugs that are given along with the chemo. My chemo nurses told me to expect hair loss about 14 days after my first treatment, and they were right, to the exact day. I started checking to determine how firmly my hair was stuck to my head, and when I could grab a tuft of it and pull it out with just a little tug, it was time for a new hairdo.
I bought a wig, which every woman does who’s about to go through chemo, and like a lot of women, I found it hot and itchy and maybe a little like I was pretending I had hair, because everyone knew I was bald as an egg. I work in an office where my colleagues and the nurses, paramedics, and EMTs are all a huge family, and it didn’t take long for me to ditch the wig and wear hats.
As the months of chemo clicked off, I was relieved to discover that for ME, it wasn’t like the movies, where chemo is pictured as being intolerably wretched. Although everyone handles cancer poison differently, for me, there wasn’t a lot of drama.
I’m convinced that keeping moving goes a long way toward making all of this endurable!
And it was about this point when I decided I was NOT going to be ashamed of my head. It’s a very nice head, has served me well all my life, and that fact that it was missing its hair wasn’t going to make me hide. So I started going commando once in a while. I was a little afraid I was going to be “cancer girl” to everyone, but with lots of eyeliner and some big earrings, everyone seemed to take it in stride. But there was once, when I was in the public ladies room at work, and I was washing my hands at the sink. A woman walked in, looked at me, swung the door open again so she could look at the sign on the door, and walked back in. I laughed all day.
The next speedbump was the mastectomy, and to be honest, I was looking forward to this surgery. After all those months of poison to kill the cancer, I wanted to uproot it once and for all. Still, it was my breast. It had been a big part of my life for a long time. It filled out a bikini when I was a teenager, made a pretty rack in my wedding dress, and fed my babies. Our breasts are very much linked to our femininity. The surgery itself was no big deal—getting highlights put in my hair takes longer than it took to remove my breast—and after an hour in the recovery room, I went home. Yes, there were tears when I took the bandages off and had a look. There was just a lumpy, surgical slash where my breast used to live. The symmetry of my middle-age body was all off. But once again, there was no going back. My “new normal” had only one breast. And for almost exactly a year, until the reconstruction surgery, that was just OK.
About six weeks after the mastectomy, I began radiation treatments. This approach to stamping out cancer cells is a marvel in modern physics. The treatments are planned carefully so that the radiation beams destroy any cancer nits that might be hanging around, but narrowly miss the heart and lungs. Dr. Paul Miller, another scary smart physician whose background was in engineering, was in charge of my own radiation joy-ride. For about seven weeks, Monday through Friday, I reported to the radiation oncology office, took of my hat and shirt, and lay very still on a very hard table while a machine that looks like a gigantic manhole cover sang its one-note radioactive song for about twenty minutes.
Many women say that radiation is the easy part of breast cancer treatment, but not for me. Lying perfectly still, day after day, while radiation was zapped into my body was physically and emotionally draining. And because we were treating my chest very aggressively and I was still taking a chemo drug that sensitizes the skin, the radiation burned the crap out of me! Radiated tissues take a long time to heal, and I had radiation wounds that didn’t completely close up until several months after treatment was finished. It left me with a big scar behind my arm, a tight and contracted pectoral muscle, and a wonky shoulder that will probably never have complete range of motion again. Yes, it was difficult. But I’m truly grateful for the technology. I have the assurance that any cancer cells that escaped Dr. Kademian’s knife were thoroughly roasted by Dr. Miller’s radiation, and it was a powerful weapon in my fight to live.
After radiation was finished, and I finished up the bonus rounds of chemotherapy that we’d decided to add on, my active treatment was over. It was time to let my body recover from the poison, slash and burn ordeal we’d put it through. For the next nine months, I grew some hair, went to work, rode my bike, went to church, fed the dogs, just got on with the business of living. Of course, breast cancer was in my thoughts every day. Over time it got easier, but I checked my scar for lumps or rashes or RED SPOTS every morning and worried a little about every twinge. And then there was the small detail that I only had one breast!
The prosthetic breast was amazingly lifelike. When I was dressed, I looked exactly like I had a full rack. For me, though, the silicone prosthesis was hot and heavy and not much fun. In the middle of a walk one hot afternoon It slipped out beneath my sports bra and I barely caught it before it bounced down the sidewalk. I can’t tell you how many times I got to my office in Oxnard and remembered my breast was at home in my drawer in Simi Valley. For these occasions, I discovered that a swiffer duster, without the handle, provided the right amount of frontal puffiness to look like a breast for a few hours. There are many women who are very satisfied with their decision of living with one or both breasts gone, and I have a tremendous respect for them. My 89-year-old mom, in fact, is among them. She enjoys the coolness and comfort of not dressing with a bra, and she looks adorable. But I was very much looking forward to reconstruction.
Fast forward nine months, and I’m in the operating room again at Los Robles hospital—this time to restore my body, instead of cutting away the cancer.
I woke up after twelve hours of anesthesia, during which Dr. Kademian removed my remaining breast, while two plastic surgeons, Dr. James Watson, assisted by Dr. Georgeanna Huang, cut slabs of skin and fat from my abdomen, created breasts out of them, and using microsurgery, connected them to their new address on my chest. What a marvel! There are women who have such a slim build that they don’t have enough tummy fat to create new breasts, but not only did I have enough to make about twelve new breasts, I could have run a donor drive with all the friends who offered to contribute their own abdominal fat if I needed any extra.
The recovery from surgery was fairly lengthy, since I’d had a complete front-end alignment, and since this reconstruction process typically requires at least a couple of surgeries, we’re not even quite finished yet. We still have some minor tweaking to do. But the next time I go under anesthesia, I intend to tell Dr. Watson that he better not wake me up until I look just like my friend Angie. The next time we go to the beach together, I want to give her a run for her money.
So here we are, two years almost to the day from when we received the news that we had breast cancer. We’ve fought our way through this jungle of cancer-land, and we will never be the same. I have scars from radiation wounds, about five feet of surgical incisions that have healed, new breasts that currently look like two blind mice because they have yet have new nipples surgically applied, and probably due to the massive doses of chemo we threw at it, an immune system that doesn’t resist infections with much enthusiasm. I take medicine every day that’s designed to reduce the amount of estrogen circulating in my system, which helps prevent my breast cancer from an encore appearance, but it also makes my knees and hips and hands a little stiff and painful.
But here’s the deal. A hundred years ago, I would have just died of breast cancer. And when I’m tempted to throw myself a pity party and lament over the beat-up me that has slogged through breast cancer treatment, I remember that none of these leftovers from treatment are unmanageable. They are a small price to pay for my life.
When I was diagnosed with breast cancer, it felt like I’d just found a rogue elephant in my living room. It crashed around for months, breaking my lamps, pooping on my sofa, stepping on my big-screen TV. It’s all I could think about—like an awful radio station playing in my head, 24 hours a day. It’s all-consuming, and I was terrified. But as the months went by and I endured the baldness and the fatigue and the surgeries and recoveries and just getting used to being someone who had cancer, the elephant gradually shrunk down into a little mouse in the corner. Most of the time I can ignore that mouse. I know he’s there, but he doesn’t bother me. Once in a while, though, when my back aches, or I find a mosquito bite, or my eyebrows itch—anything—the mouse can instantly become a warthog and start banging around the room again. “It’s breast cancer! I just know it!” A couple of weeks ago I bumped my head on the hatch cover of my Prius, and I got a little lump up there. I showed it to Jerry and said, “Feel this…do you think it’s breast cancer?” For the sake of my recovery and mental health, I’ve had to learn to laugh at myself, and remind myself that we have figuratively thrown the kitchen sink at my breast cancer. We’ve done everything we know how to do to eliminate it and shut it out forever.
At the same time, for all the research and scientific advancements made for the treatment of breast cancer, it remains an elusive and sometimes mysterious disease. The only way I’ll know that my breast cancer won’t ever come back is when I die of something else, and at this point in my life, I’m hoping it will be when I’m ninety years old and winning a downhill mountain bike race. Even decades down the road, breast cancer can recur in distant parts of the body, and when it’s in our bones or liver or lungs, it can be treated, but it can’t be cured. And maybe it’s this aspect of the disease that’s responsible for the difficulty that some cancer survivors experience with laying down their burden and moving on in life after treatment is finished. On one hand, my breast cancer has been wiped out. I have to believe it’s gone for good. On the other hand…I would be thrilled to read about new research that promises a cure. About a new mammogram technique that not only squashes my breasts, it pops out any cancer it finds, like squeezing a zit. Or even better, a vaccine that would make breast cancer just a disease that people used to get.
Like all of you, I don’t know if I’ll live another five minutes or another fifty years. My own vote is to avoid the five-minute end of the continuum, because it would end our day pretty suddenly, and then someone would call 911, and my own paramedics would respond and do CPR, which is something I don’t even want to think about. Being a nurse as long as I have, I’ve learned that life is fragile and unpredictable. But for today, with all my breast cancer extermination treatments in my rear-view mirror, I do know this…and this is the part I really want you to hear…I will live life knowing that it’s not a dress-rehearsal. Every day is a gift to be treasured. My universe is bigger and broader and better for the love I’ve experience and the people who have cared, and I have explored depths within myself I never knew existed. And I can say with complete assurance and profound personal experience, that for those of you with mountains to climb…with challenges you’re not sure you’re up to…with your own rodeo to win, whether it’s breast cancer or anything else…you don’t have to be brave. You just have to show up.
There are so many people who made such a difference in this breast cancer journey.
My friend Sue, who knitted hat after hat for me, to match any outfit I wanted, and sent them UPS, hot off the needles, so I wouldn’t even have to drive to pick them up.
One of the county paramedics, who, when I had posted this photo of my brother and me on Facebook, commented, “You look like a French model.” It made my heart sing all day.
My old high-school buddy, Kim Lamb Gregory, who supported and encouraged and cheered me on when I wondered who on earth would be remotely interested in a middle age, ordinary woman’s battle with breast cancer. And who shared with me her own journey through breast cancer-land when she received her diagnosis just a year after mine.
Our new friend, Karen Quincy Loberg, whose camera, although mostly invisible to me, brilliantly captured some of the most wretched, along with some of the most triumphant moments of my life.
My boss, Steve Carroll, who valued me enough, both as an individual and a member of his team, to help me juggle my schedule and just make it work through two years of treatment, pretended to not see the occasional nap under my desk, and brought me enough homemade soup to float the Queen Mary.
My brother, who endured a Pennsylvania winter with a shaved head out of solidarity for me, and flew across the continent twice just to hang out with us after surgeries.
Our son Tom, who is a contract analyst and faints at the sight of a dirty band-aid, but sat with me through hours of chemotherapy and arranged for pink rubber bracelets with my name and a quote, “I’m a warrior, not a statistic.”
Our other son Tyson, who, with his lovely wife Julie, sat in a hospital waiting room with Jerry for thirteen hours while my plastic surgeon built me new breasts.
My husband, Jerry. Thirty-six years ago, we both took a vow to be there for each other, in sickness and in health. Throughout our marriage, but especially during the last two years, my husband has lived out his vow in ways that made our experience with breast cancer something deep and rich and profound. His servant’s heart has loved me through screaming fits of despair, moments of terror when I clung to him like a psychotic Rhesus monkey, the weakness of chemo, the pain of surgery, and the days when I felt too ugly and damaged and overwhelmed to go on. He makes me feel beautiful. He cherishes me. He makes me laugh.
Early on in this breast cancer fandango, when I would allow my thoughts to wander into the dark side, I would get what we called “the shivers,” when I clung to him and sobbed out my fear and uncertainty about the future. Well, I got the shivers one day, and I knew I was being ridiculous and had my theological facts all off, but I said, “I’ll die of breast cancer and go to heaven, and I want you to marry a wonderful woman so you won’t be alone, but then both of you will die and go to heaven and I’ll be all jealous that you’re there with her.”
And Jerry, who is not known for his extemporaneous humor, didn’t miss a beat. “It’s OK, honey,” he said. “I’ll marry a sinner so she can’t come.” And the shivers were gone.
And that leads me to the gratitude that I want to express to my heavenly Father, in whose hands my life rests. I may never know the reason why we were touched with breast cancer, but I know my Creator’s plan for us is perfect, and I know it includes hope and a future, and the promise that He’s beside us every moment of every day.
Last week, I went to work every day and hopefully made a difference in someone’s life. Jerry and I rode bicycles and enjoyed the beautiful fall days. I bought some gorgeous stiletto high heels. We went to church, prayed with friends, and went to Costco to eat samples and ice cream. As you can see, I’m surrounded by my family, whom I love, and who loves me. And because of the brilliance and support and dedication of a crowd of people—family and friends and physicians and nurses and physical therapists and about a million others—including all of you, because you’re here to learn about breast cancer and support research and treatment—I’m standing here today, well and alive and living my life, with hope in my heart, and holding my beautiful granddaughter, Aubrey Rose.
I’m profoundly grateful. Thank you.