Or, A Smarty Pants Guide to Surviving Just About Anything
This is a transcript of a keynote I gave at PinkFling, an event benefiting The Women’s Initiative Supporting Health (WISH) Fund at Carroll Hospital Center.
Good afternoon.
My name is Ann Bevans and I am a breast cancer survivor.
I guess I don’t look like a typical breast cancer survivor. After all, one of the greatest risk factors is getting older. But, of course, I had to defy the odds. And so, I was diagnosed with breast cancer at the age of 33, with absolutely no family history that I know of.
That was a little over two years ago, and thanks to excellent medical care, great friends, and a healthy dose of faith, I am now cancer free. No cliffhangers here.
During my talk, I’m going to share with you a little bit of wisdom about how to cope with a cancer diagnosis, or any sort of unexpected challenge. Then I’m going to talk about why I think breast cancer is such a big deal. And finally, I’m going to talk about the survivor’s mentally – how to move forward into a new phase of your journey.
So let me back up for a second. You’re all wondering, “Who is this Ask Ann? And what makes her a smarty pants?”
You probably remember me. I was the kid in school who knew everything.
Rewind with me to the sixth grade. Ridgely Middle School. Mrs. Schwarz’s English class. I sat on the end of a row of three desks. To my left sat Michael McConnell, the class clown. To his left sat my best friend, Alison Jedrick.
Alison was smart and nerdy and dressed weird and I loved her. Praise be to Facebook, I still love her. We were birds of a feather.
Anyway, Michael, who had the terrible misfortune of being assigned the desk between us, had absolutely no idea what was going on in this class. Every day, he’d turn to Alison. “What did the teacher say? What are we supposed to do? Why did I leave my brain on the school bus?” And Alison, who, in her 11 year old angsty way would be engrossed in whatever poem she was working on, would whisper, “Ask Ann.”
It sort of became a nickname, and it stuck. To this day, my parents call me and say “We have an Ask Ann question.” It’s usually about Shakespeare. I don’t know why. Although one time they did call me to ask if Dame Edna was a man. I wasn’t quite sure what to say to that one. I mean, if you’re in your 60s and don’t know that Dame Edna is a man, I don’t know if I want to be the one to correct you. Particularly if you’re my mother.
All of this is to say that I am a smarty pants. I know all, I see all, I control all. Or so I thought.
Fast forward to 2009. I am still a smarty pants. For the past 10 years I’ve been running my own business. I do marketing and web development. I’m on my second husband and, of course, I have perfect children. The only thing that’s troubling me is that I’ve been so TIRED lately. I’m sleeping 10 hours a night and I’m still exhausted.
One day, I found a tiny little spot of blood in my bra.
The first day you find a tiny little spot of blood in your bra, you think “Oh, I’m a teenager! I had a pimple.” The second day, you think “Is this the bra I wore yesterday?” The third day you think “I’m surprised that didn’t come out in the wash.” And so it goes. You just go on telling yourself stories.
After a couple of weeks of this (yes, a couple of weeks), I was wrestling with my two year old son. He sort of rolled over me, and I felt something come out. Big spot of blood in my bra. It was time to call the doctor.
To her credit, my primary care doctor, Dr. Kouroulakis, didn’t let on like she knew I had cancer, although I’m pretty sure she did. She sent me down to radiology the next day “just to cover all our bases.” “It’s probably nothing, but let’s just have a look-see.”
I’ll never forget that first trip to radiology. The mammogram tech was actually angry at me for getting a mammogram. “At your age?” she said. “There are probably half a dozen other tests you should get first.” Like I was wasting her time. “You do NOT need a mammogram!” she said, and she stormed off to the radiologist’s office to express her annoyance.
When she came back, she was a lot softer. She called me honey. She gave me my test.
After the mammogram, I got an ultrasound. It took forever. I was lying there thinking, “This is the room where I had my sonogram before my son was born. Why does this stupid, unnecessary test have to mess up my memories of this room?”
Then the radiologist came in to have a look. That never happens, by the way. They were literally talking over my head – “Oh, that could be a lymph node. Oh, yeah, I see it what you’re talking about.”
A few minutes later, I was in the doctor’s office. One wall of her office was literally covered with dozens of backlit images of my boob. She had been working on this for a while. It was surreal. I was watching her mouth moving, and the mouth was saying, “I want to do a biopsy. Actually, I think we should do it RIGHT NOW.”
The first rule of being a smarty pants is that, when something unexpected happens, you handle it. You don’t call your sister. You don’t call your mommy. You don’t put out an APB. So when she said, “Is there anyone you’d like to call to be here with you?” I said “No thank you. Let’s just do this.” The voice inside my head was saying, “There’s no crisis here. Everyone just move along.”
As I bounced from room to room and paper gown to paper gown, I realized, with a kind of growing awareness, that I was the only person in radiology that day who did not know I had breast cancer.
One of the most difficult things about a complex diagnosis is that it takes a long time and a lot of tests before anyone can tell you with any degree of certainty what will happen next. Forget about what happens at the end. What do we do now? is an impossible question to answer.
You can imagine what this state of affairs does to a person like me. I have to know everything right now. I can’t NOT KNOW! I have things to do!
I literally went from knowing everything to knowing absolutely nothing, like that. I’m sure plenty of you have endured the days after a biopsy, where you’re waiting. Just waiting. Even after I caught on to the mood in radiology, there was no clear answer.
Remember Dr. Kouroulakis, the primary care doctor who probably knew but acted like she didn’t know? She called me a few days after my biopsy, before the results came back, to see if I had any questions.
I said, “The only question I have is the one you can’t answer. Do I have cancer?”
She hesitated, then said, “Um, are you the kind of person who likes to know as much as possible about what’s going on?”
“Uh, YEAH?! Is there another kind of person?”
“Well,” she said, “I can tell you that we don’t see symptoms like this in people who do NOT have cancer.” And that sealed it for me. That’s a hell of a way to find out, isn’t it?
There’s no good way to find out.
But I was grateful to her, because she gave me a gift. Her courage gave me my first handhold in a parallel dimension I call my lost year.
In the lost year everything spins backwards, even the toilets. It’s like living in Australia, only insane, Bizzaro world Australia.
At the start of the lost year, the world is spinning around me. I can’t look my two year old in the eye without bursting into tears. Every day is a blur of tests and doctor’s appointments, and second opinions, and visits with the fertility people. And thank god, because if I had five minutes to myself, the weight of it all would likely crush me.
All the spinning comes to a screeching halt the day I meet my oncologist, Dr. Hwang, and he says these magic words: “Six cycles. Mastectomy. Maybe radiation. Herceptin. Tamoxifen. We start next Thursday.” No guarantees, but at long last, finally, a plan.
As I entered my lost year, I learned that I am not in control. The universe has other plans for me.
I also made three critical decisions:
1. This is happening to me because I am strong and I can survive it.
2. Because this is happening to me, it isn’t happening to someone else.
3. Most importantly, breast cancer will not kill me.
Delusional? Probably. But these decisions, and the faith behind them, helped me survive the bleakest time in my life.
As I was getting ready for that first chemo appointment, I remember thinking, “The hard part is over. No matter how much this sucks, it’s just physical discomfort, and it can’t be worse than the emotional turmoil of the diagnosis, and all these questions about my fertility and not knowing what was going to happen. I’ve got this.”
Well, if you’ve had chemo, you probably know how short-sighted that was. I don’t need to tell you how much it sucks. For the rest of you, it really, really sucks.
This probably isn’t true for everyone, but for me, the key to staying sane during chemo was to keep my life as normal as possible for as long as possible. Here was my routine.
I got my chemo on Fridays. Friday night, my sister would pick our two year old up from preschool and take him to her house for the weekend. I’d lie around feeling putrid. By the time he came back Sunday night, I was sort of functioning. My husband would stay home on Monday to wrangle the kid. Tuesday, I was back in mommy mode, with work functions coming back online by Wednesday. Then I had two and a half weeks of relative normalcy until I had to do it all over again. I did that six times.
Now, you should know I have excellent insurance. My husband’s a fed, so thank god, I was well taken care of. My insurer has a mechanism for people like me. I call it the big pink boob machine, and it whirrs into action the moment any doctor anywhere mutters the word mammogram. They are ON you.
You get a lot of perks for being a chemo patient. For one, you never have to wait for urgent care because they don’t want you sitting around with a bunch of people who are coughing on each other. They actually let you wait in a secret waiting area, then they sneak you in the back way and get you out of there as quickly as possible. It’s awesome.
Also, you get to go to the “holistic medicine guy.” His job is to make sure you’re not suicidal. But for me, the holistic medicine guy was my stress doctor.
So here’s the thing. Being a smarty pants is pretty stressful. You have this massive responsibility. Being right all the time is hard work! It takes a toll.
The holistic medicine guy showed me about deep breathing, which was a revelation to me. Not because I hadn’t heard about deep breathing, but because he actually hooked me up to a machine and showed me how my pulse changed when I was doing it. That was pretty cool.
I have to say, though, that I ended up not liking the holistic medicine guy very much. That’s because he insisted on asking me uncomfortable questions, like “Why are you working so hard? Why can’t you take some time off to focus on healing? Wouldn’t your husband be okay with that?” And the final straw, “Why don’t you go to the park this afternoon and chase butterflies with your son?”
Seriously? The last one made me want to come across the desk at the guy. It was dirty pool. Because the truth is, the thought of going to the park and chasing butterflies with my son doesn’t appeal to me on a good day.
So I had all this guilt around not really enjoying the butterfly thing, wrapped up in all my guilt about not taking good care of myself, wrapped up in all my guilt about not being able to take care of my family, wrapped up in “Why the hell do I have breast cancer?”
Not a good day.
But I got through it. I got through it by focusing on the perks. In fact, I had a thing going on Facebook for a while where I listed all the best parts of having chemo. For example:
Chemo perk #42: when you lose your hair, you lose ALL of your hair.
Speaking of hair, we have to talk about that, right?
The first thing people notice about me when we meet is my sparkling personality. The second thing they notice is that I have pink hair.
Now, I don’t want you walking out of here thinking the pink hair is for you. It’s not even for the Komen 3 Day, which I walked last weekend. My hair’s been a bunch of different colors since it grew back in. In fact, I lost all my hair hang-ups the day I shaved my head.
I’ve actually come to the conclusion that every woman should shave her head once. And I’m going to tell you why.
When I first realized I would lose my hair, I wasn’t too worried about it. After all, it’s just hair. I’m not a vain person. Whatever. But I did notice myself checking out the rest of you, looking for short hair styles, trying to figure out what it might be like. After all I’d had very long hair my entire life.
What I realized from my investigation, which took place mostly on metro trains, is that not many women have truly short hair, but an awful lot of us wear pony tails every single day. Hmm.
The other strange thing that happened was I became obsessed with getting a really fantastic hair cut before my hair fell out. I remember walking through Friendship Heights – that’s the neighborhood in DC where they have the Tiffany and the Gucci and the Bulgari – all the places I can’t afford. I was looking for a fancy place to get a really hot haircut. I have no idea where that came from.
After chemo started, I did start to get a little worried, not about being bald, but about the process of losing my hair. After all, I had a two year old. I was obsessed with the idea that he would reach up to touch my hair one day and come away with a fistful. I thought that you would be really scary for him. Typical, right? Thinking of everyone else first? But I couldn’t let that happen.
So, the first time I got the idea that the hair might be coming out, I decided to take care of it. Now, a lot of women make a big deal out of this. They invite their friends over. They drink wine and shave each other’s heads. I’m not judging. But I’m a smarty pants, remember? That’s not how we do things.
So one Tuesday in August, entirely on a whim, I got in my car and drove over to the local Hair Cuttery. This is not where I normally get my hair cut, so I didn’t know anyone there – just how I wanted it. I sat in the chair and said, “Sister, this is going to be the easiest 10 bucks you ever make. Shave my head.” She kind of looked at me funny, but knew enough not to ask questions.
After it was done, I whipped on a bandana, paid my 12 bucks, and left. I drove to a park near my house and walked into the woods. I made my way down a hill to a stream, where I knew I would be alone.
I reached up with one hand and pulled off the bandana. Then I reached up with the other hand and got acquainted with my head. No big deals, no drama. Just me, my head, and a babbling brook. I had no idea how to feel in that moment, so I decided to feel free.
I drove home, took a photo of myself, and posted it on Facebook. My friends told me I looked beautiful. And you know what? I did. When I looked in the mirror, no kidding, I saw my face for the first time. There was no hair to scrunch, no bangs to adjust. It was just me.
And that’s why I think every woman should shave her head at least once.
There are some pretty funny moments that go along with being a six foot tall bald woman. For example, you should see the looks you get in the ladies locker room at the gym.
You know how we’re all in the locker room, trying not to look at all the other naked ladies – just sort of using our peripheral vision to avoid bumping into people? It’s a sort of social contract, isn’t it?
Well imagine you’re toweling off and suddenly there’s a six foot tall bald person standing next to you. That was a serious freak out for many people, and honestly, I had way too much fun with it.
Also, the perks. If you go to a crowded bar, you’re going to get a seat. Just last month I went to a concert at Rams Head Live in Baltimore. We were hanging around the bar waiting for the horrendous opening act to finish up. There were no barstools open. My friend Lindsay wandered off and came back with a bouncer and a stool. The stool was for me. After the bouncer stepped away, I said, “Linds, did you tell that dude I have cancer?” She said, “Of course I did!” The good times roll on.
There were also times when complete strangers reached out to me in ways that were beyond loving. I remember one time, back when I was bald, I was standing in a long line at Panera Bread. There was an older woman in front of me, and she did one of those double takes. That happened literally 20 times a day. But then she put her hand on my arm, looked me straight in the eye and said, “I really love your hair style.”
There it is. You’re in the club. I know what you’re going through, and even though you don’t know me, I want you to know I love you and I’m pulling for you. That sort of thing meant the world to me.
For me, being bald was sort of a badge of honor. When you’re a 30-something bald woman, there’s no hiding that you have cancer. People treat you differently. For all my smarty-pants-ness, for the first time in my life, I found it impossible to blend in. And you know what? I kind of liked it.
I think that’s why I have pink hair. I found I liked the idea of my outside matching my inside, that a complete stranger could know something about me before I even open my mouth. And, I have to admit, it hasn’t been bad for business either.
A few weeks ago, right after I had my hair done and it was REALLY pink, I had a meeting with a prospect. He said, “I like you. You’re just a little bit wacky. I want what you have, only a little less wacky.” And he hired me.
Often, people will say, “I LOVE your hair! Oh, I could never do that though.” Really? Are you sure? Okay, maybe if you’re a trial lawyer and you need people to take you seriously all the time. So is there something else you can do? Some small way you can stand out from all the other trial lawyers? I suggest you try it. It’s addictive.
And that brings me to why I think breast cancer is such a big deal.
I need to preface this by saying that my husband is a 25 year cancer survivor, so he’s sensitive. A few weeks ago, as I was preparing for the Komen walk, my husband said, “What IS IT about breast cancer that gets you people so riled up?” He meant this with all the love in his heart, I assure you. “I mean, people die every day, from lots of different types of cancer, and other things too. What is it about this disease that draws a crowd?”
As I thought about it, I realized that women love to hate breast cancer because it attacks the very parts of ourselves that define us as women. After all, is there any part of our bodies that we associate more with femininity and motherhood than our breasts? But it doesn’t stop there. Battling breast cancer takes away our fingernails, our eyelashes, our hair. Pretty much every physical manifestation of our womanhood.
That is why we come to events like this. That’s why we walk 60 miles and grow our hair long just so we can get it all cut off and donated it to a woman who’s lost hers. Because we know that losing your breasts and your hair and your eyelashes doesn’t make you any less of a woman, but it’s up to women to stand together and keep reminding ourselves of that.
The support that I felt during my lost year blew my mind. I knew I had great friends, but I didn’t know how great or how many until I was diagnosed. I started a little cancer blog in the early days, back when the world was still spinning. I started the blog because I thought people would want to know how I was doing, but they wouldn’t really want to call. And to be honest, I wasn’t sure I wanted them to call. My first post started like this:
“Ann is 33 years old.
Ann is typing on her laptop in bed.
Ann needs a shower.
Ann has breast cancer.
I never thought (never ever) that I would have breast cancer. You see, I had plans, and this wasn’t one of them.”
In another post, I wrote:
“I got tagged on a facebook meme, “The Threes of Me.” One of the questions is this:
What are the three things you’re most looking forward to?
I got stuck on this one. I could only think of one. It was this:
Being alive on my son’s third birthday.
A viable goal, to be sure, but one that wasn’t on my radar two weeks ago.”
In my blog, I documented all the different doctors I went through, all the options that were presented to me, all the good days and bad days. I wrote about the wonders of conscious sedation and how people are in fact nicer to cancer patients.
I usually announced new blog posts on Facebook. I was always amazed at how many people would leave encouraging comments. Michael McConnell from sixth grade English left comments! Encouraging ones! Not like, “Ask Ann, do you know where I parked my car?”
I’d go to parties where people I barely knew couldn’t wait to tell me that they were glued to my blog and they were pulling for me. And you might think, small comfort…but it was anything but.
My clients were also amazing. They’re always amazing, actually, but during my lost year, they would call up just to see how I was feeling. I was working hard when I could, trying to keep busy. People would say, “I can’t believe you’re so cheerful in the midst of all this!” My reply, “What’s the alternative? Should I sit in the corner and cry for a few months?” Of course not. You have to keep going.
Six rounds of chemotherapy followed by a mastectomy performed by the great Dr. Iorianni. I have to get all of their names in because my team is awesome. Right before wheeling me in to surgery, Dr. Iorianni said, “The thing you’re going to remember about this is the drains.” And he was right. Then he squeezed my foot and told me it was going to be okay. And off we went.
I had 17 lymph nodes tested following my surgery and they were all negative. 17 is a lucky number in my family. My mother, my father and my son were all born on the 17th. When he told me the number, I knew it was over. I was cancer free.
So suddenly I’m a survivor. What do you do with that awesome piece of news?
Transitioning to survivorhood doesn’t happen overnight. After all, you’re still in treatment. But over time, your hair grows back, hopefully without that awkward Ronald McDonald phase I went through. You finish up your herceptin, your port comes out. The hot flashes go away, and your legs stop cramping in the middle of the night. The hot flashes will probably be back in a few years, but that’s another talk.
I had a challenging moment just about six months ago, where I realized that, if the cancer had killed me, I might have regretted the way I’d spent the last few months of my life. All the stuff that I’d done just to cope – working long hours, keeping busy, sending my son off to my sister’s house – I may have regretted those choices if things hadn’t turned out the way I’d planned.
You see, I’d had so much faith that the cancer wouldn’t kill me, I just kept on going. And I didn’t allow myself to question that faith until it was over. I thought of the “holistic medicine guy” and his butterflies, and I wondered if I’d done the right thing. I honestly don’t know.
Other moments come to me all the time – moments of gratitude. I’ll be having coffee with a friend and suddenly realize how grateful I am to be there with that person in that moment.
I still don’t chase butterflies, but I do play copious rounds of I Spy with my now-four and half year old, and I well up when I see him play with his grown brothers.
As I mentioned earlier, I walked in the Komen 3 Day just last weekend. The 3 Day is a 60 mile walk over 3 days, and it is HARD, no matter how much you train. I’m actually not sure how I’m standing here right now. I might be asking for a wheelchair in a few minutes. The first day, we had constant, soaking rain. I’ve never been so wet in my life. But walking into camp at the end of the day, soaking in all the cheers and applause, was addictive. I wanted more of that.
I walked the whole 60 miles, and on the last day I walked into closing ceremony, arm in arm with my fellow survivors as each of the other 2000 walkers and 450 crew members saluted us by raising one muddy, rain soaked shoe in the air.
As we walked in, the emcee said something that moved me. She said, “These women have already fought their battles. They had every right to dust themselves off and walk away, never looking back. But here they are, committed to ending breast cancer forever.”
I’ve had that thought, in fleeting moments. “I’ve paid my dues. Why am I attached to this cause? Why am I surrounding myself with all these memories of what I went through and all the horrors of what might have been?”
I like what Jane Lynch said in a recent interview. She was asked, “How did you get through the times where you felt different?” She said, “I just kept asking, “Are you my people?” I asked over and over again until I found them.”
You are my people, and that’s why I’m here.
What is our most important job as survivors and friends of survivors? We need to keep shining the light on this terrible disease. We need to talk about our experiences so others know they’re not alone. We need to tell gory stories about how our cancer was discovered so others know what to look for. And we need to make sure that everyone – young and old, rich and poor – has access to live-saving diagnostics and treatment.
Last Tuesday I want to a Matt Nathanson concert at the 9:30 club. Again, me, with the standing – two days after completing a 60 mile walk. Honestly, I had no business being there. The show started after my bedtime. I had to endure Vanessa Carlton as the opening act. Lots of things were working against me. I even texted my husband right before Matt came on and said “I should have stayed home.” But as I stood there grooving to the Matty, I felt so alive. And it was all worthwhile.
The thing is, you have to choose to be alive every day. Before my diagnosis, I was going through the motions. During my lost year, I was just surviving. But now I get a choice. I can choose to do things that move me and be with people who love me and make art that inspires me.
I can come here today and tell you my story even though it’s scary and even though you might not have laughed at the right times and even though I knew I’d probably cry. Because that’s called being alive and that’s our job here on earth.
The good news is, you don’t have to go through a journey like mine to make this choice. You can choose right now to make the most of what you have. You can choose to be true to yourself, and to live every day to the fullest. You can reclaim your life, and I hope you will.
Thank you.
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