Feel Your Boobies®
Inspiring stories about little lumps & big changes.
I’ve been very public about my breast cancer journey - an open book if you will. Through the Feel Your Boobies Foundation, which I started in 2004 after my own diagnosis at the age of 33, I’ve talked about my story basically every day since.
But this book isn’t about just MY story, because my story, quite honestly, has become woven together with so many other women I’ve met since 2004. Whether they found their lump because of the Foundation’s work or our paths crossed through because we’re engaged in the breast cancer community, they have become part of what has lifted me up, given me courage, and motivated me in all the years since my diagnosis. Because their stories, like mine, involve changing their lives in pretty major ways coming out of their bout with breast cancer; in ways that focus on helping others and giving back after an experience could have just left them feeling broken.
This book is a collection of stories. Stories that uncover the underbelly of an unexpected diagnosis, highlight the humor you can appreciate only in retrospect, and share the gifts that slowly emerge once the dust clears.
Sharing stories is powerful. It heals those who are brave enough to share their own, and it makes those just starting on their journey feel less alone. I started to write this book by reaching out to women I had met throughout the past 15 years to learn more about them. Because while on the surface all of our stories sounded similar—we found our own lumps and got breast cancer at an age we weren’t supposed to—what happened next for these women is nothing short of remarkable.
For all of these women, their plan fell apart at a time in their life when things were just starting to come together. The plans they had in place were put on hold and were replaced by questions with no answers. But as the pieces of their lives started to come back together a new plan took form, question marks turned into answers, and each of them found a new path and passion in life; one that involved using their gifts to change the world. And because they chose this new path, they each have healed in a more complete way than than they ever could have on the path they previously traveled.
These stories inspire me, and I have no doubt they will inspire you too. Whether you just received this unwelcomed news, you’re a caregiver or friend who’s scared and confused about how to support a loved one throughout this tough time, or maybe you just dig lemons to lemonade stories, this book will provide humor and insight. Breast cancer affects more than just the person diagnosed. The ripple effects are tidal and the storm doesn’t calm for quite some time.
I hope this book helps you navigate the storm in all of its stages, provides wisdom and perspective, makes you laugh, and maybe even cry—but most importantly shows you that there is life after breast cancer. And that what’s coming your way might be bigger than you can even imagine from where you currently sit.
After all, life isn’t defined by what you do when your plan is working, it’s defined by what you do when it completely falls apart.
The Breast Cancer Journey
When receiving a breast cancer diagnosis, the world feels like it freezes in time. You reflect on your past, and look to the future in ways you never have before. Days immediately seem more precious and the idea that they may now be numbered changes everything.
In the beginning, the diagnosis feels like a huge globby mess that can’t be organized no matter how hard you try. And just when you think you’ve made sense of something, a new piece of unexpected information enters the picture. It’s a circus, but not in a good way, because you have no idea which sideshow you should give your attention to at any given moment.
But in retrospect, the breast cancer journey takes form and it can be seen in phases. You begin to think about it in chunks and your memories are parsed into bits and pieces accordingly. In time, you gain perspective on things that previously were overwhelming. And this perspective starts to change you. Not just during the days of your breast cancer journey, but in all that days that follow.
When talking to other women who have gone through it, I’ve noticed that these phases are generally the same for everyone. We all remember the journey in the same distinct chunks. And there are moments in time during each of these phases that are etched in our minds like a mental photo album. These moments are so vivid that they take us back to the exact situation and evoke emotion in us as if we have traveled back in time. The emotion is still raw, but the clarity that moved into the forefront is humbling.
This book uses those phases as a road map through my journey along with five other women who have also traveled on this path. In hopes that, for those just starting out, they can immediately find comfort, humor, and insight to ease the burden at any phase in along the way.
The breast cancer journey, at some level, will always be remembered as a time in your life that felt like a “globby mess”, but eventually, in time, it feels a little less messy and a little more purposeful.
If your journey is just beginning, trust in this. Because it’s true.
Chapter One: Chasing Dreams
The remarkable thing about a breast cancer diagnosis is that you begin to think of your life in two phases: before breast cancer and after breast cancer. You tell stories by prefacing it with “that was before I was diagnosed” or “I think that was a couple years after I was done with treatment.” It’s inevitable because a life event like cancer creates chapters in your life—whether you want it to or not.
Understanding someone’s life before breast cancer is like uncovering a piece of them that will never be again. It’s remembering how they felt about life before facing the possibility of death. Because before breast cancer, we all had dreams, we all had a vision of how life would be, and we were all busy traveling on that path.
But then, breast cancer interrupted.
Before breast cancer, my dream was to find something bigger.
Let’s just be honest. I’m ambitious. Like really ambitious. I’ve never been one to let life happen to me, I pretty much made things happen.
When I was graduating from high school I knew two things: 1) I wanted to go to college, and 2) I wanted to leave my small town. The small town where I was raised was also where my parents were raised. So I mean I was either destined to be the mayor of my small town, die of boredom, or make a decision to feed my curious soul (ok, discontented soul is probably more accurate). I chose the grass-is-greener approach and got busy making plans to find something bigger. Something better. Something more exciting.
My ambition took me to Ithaca College in upstate New York to study communications, then directly to grad school because well, why not? It was in the middle of a brutal Ithaca winter when I was deciding on where to go, and when I got accepted to Florida State University, well that sounded like a perfectly logical (and warm!) plan for my next stop. Immediately following grad school, I landed my first job in the corporate university of a global consulting firm. It was in the suburbs of Chicago and I found a cute tiny studio apartment in the Old Town neighborhood of the city where my love affair with all things urban began.
Only a few months into the job, I was put on a project that sent me overseas. Say what? Growing up, traveling consisted mostly of car camping with my family for a long weekend, the required trip to Disney, and a flight to California that I was well aware was a hardship for our family. And of course had never been to Europe so this was like a dream come true. After a couple years, I was selected to attend Northwestern University for a second graduate degree as part of a fellowship program my company funded. The deal was that I would be a full-time grad student at their research institute for two years, be paid full salary, and the company would pay half of my tuition. It was a no brainer.
Over the course of the next 10 years I moved from Chicago, to Philadelphia, and then New York City as I moved up the corporate ladder. I felt like the world was at my feet and honestly it was. I traveled a ton for work and even more for fun. Experiencing places I had never been before was like being on an adrenaline high all the time. I tackled a few marathons, completed a half ironman, had friends scattered all over the country, and by the age of 30 was making 6 figures. My plan to find something bigger was working.
It was 2004. I was 33 and my life was pretty darn BIG.
Maggie’s goal in life was to be a dancer.
And not just dancer, but a professional dancer. At 23 that’s exactly what she was doing—full-time in New York City with the Joffrey Concert Group. The group was a highly selective student based dance company. It was a grueling schedule that she kept, dancing from 9-3 daily. But to her it was heaven on earth. The next step for those in the group was to audition for a full time paying company where they would officially become professional dancers. With that in mind, Maggie auditioned for the Rockettes and was anxiously awaiting to hear if she was selected.
It was 2014, Maggie was 23 and she felt like her dream was about to come true.
Dana’s big plan to was to have her own fashion line one day.
It’s no secret that the fashion industry is brutal, but Dana’s plan to was to attack it head on, and she was. She had landed a few killer jobs in NYC in high fashion design and was focused on spending the first years of her career just being a sponge. Dana wanted to learn all she could by working for some big name designers so that she could one day have her own line. As Dana says, no fashion designer dreams about wanting to design under someone else’s name. They dream of having their own name on the wall and bringing their own creative ideas to life. Somewhere amidst her career focused life, Dana fell in love and moved from NYC to Colorado to live with her boyfriend. But love didn’t get in the way of her plan. She quickly landed a job there as the Director of Merchandise & Design for a children’s accessories company and was full-steam ahead.
It was 2010, Dana was 27 and she felt unstoppable.
Holly was just enjoying being able to slow down, finally.
She and her husband had recently decided to close down a business in California that they started together. They were both entrepreneurs and the idea of controlling their own destiny was something they both wanted. But they had reached a point where they felt drained - both financially and emotionally. So they decided to move back to Phoenix to be near family. To be living a life without struggling to keep their business alive was a huge relief. Holly felt fortunate to be living what she defines as the “typical American dream.” She happily took on the role of stay at home mom for her two daughters and a great wife for her husband. What more could she want in life?
It was 2009, Holly was 39 and life was grand.
Janette' was just happy to finally not have a long term plan.
For 17 years she had worked the corporate grind. It was what she wanted but at some point, the long hours started to take their toll and she decided she needed to step out. It had been 4 years since she made this life choice and was completely enjoying the freedom of being able to run her three daughters around to all of their activities. She ran a hobby business on the side making personalized gifts and was just simply appreciating that she had lived her dreams of pursuing her corporate goals but now was able to just relax and put her family first.
It was 2008, Jeannette was 42 and she was feeling content.
Tyrisha’s Story (IN PROGRESS)
Tyrisha felt like her life was just beginning.
She and her family had recently moved from Pennsylvania, where she grew up, to North Carolina and was settling in. She had a 7 year old daughter and a 3 month old son. After staying home with him for three months, her maternity leave was ending and she was just getting ready to start a full-time job. As she describes it, she was “in love with her life” and felt like it was just starting to be everything she had dreamed it would be. A career, a growing family, and a new city to call home.
It was 2009, Tyrisha was 26 and life was just opening up for her.
Chapter Two: Finding the Lump
Finding a lump is terrifying. Immediately your mind goes places you don't want it to go and the voice in your head runs all kinds of scenarios you try to ignore.
The moment you find the lump is one like no other. Even if you ignore it for some time, the day you found it is one you’ll never forget. The days that follow are plagued by thoughts about whether or not you should march directly to a doctor, just dismiss it as nothing, or convince yourself that you’re just imagining things.
And sometimes, you’re the only one that feels the lump and becoming your own advocate takes courage and persistence. It’s the beginning of realizing that your gut knows when something is wrong.
Remember, listening to your gut is the best advice you momma ever gave you.
I figured it was something normal.
In the midst of my chaotic life living what felt like a kind of charmed existence, I noticed a little lump. Not on purpose. I wasn’t examining my boobs, I just noticed it casually while changing and taking a shower. It was on the outer bottom edge of my left breast. Like a ridge that was harder than the rest of my boob. It wasn’t painful, but knowing it was there started to become a pain. I was probably 31 when I first noticed it.
Now might be a good time to mention that my boobs are really small. So, to me, it was easy to feel. But, during my annual exams, the doctors didn’t notice it. So after they completed their exam, I would mention the lump and place their hand directly on it. Then they felt it but said it was nothing to worry about. So I didn’t.
I mean I was a marathon runner. No family history. And in my early 30’s. Of course it was nothing to worry about.
But as time passed, that little lump really started to nag at me. I would ask my friends, like girls do, if they had ever felt a lump before and none of them had. Usually, in the past, when I shared girl stuff with friends it made me feel better because their response would affirm that whatever I was experiencing was normal. But not this time.
Regardless, me, my charmed life, and my little lump went about business as usual. It went like this for about two years. Working, traveling, and just basically living the life of an immortal 30 year old city-dwelling single.
But sometime during that two year stretch, my “charmed” life started to feel more like a “stressful” life. The travels that once fueled me started to drain me and I started to question whether the path I was one I even wanted to be on anymore. I was single, liked my job, but didn’t love it and my love affair with all things urban started to get stale. I didn’t need another pair of shoes. I had eaten in plenty of fancy restaurants. I didn’t want to work ridiculous hours anymore, and traveling no longer felt glamorous—it felt annoying.
I started to entertain a move back to Pennsylvania. Yeah, back to that small town I had left 10 years earlier in search of something bigger. And I had in fact lived a pretty BIG life so far. But was this it? I started to wonder.
The voice in my head was telling me it might be time for a new plan. A simpler one.
Maggie figured it was a muscle knot.
In February 2014, Maggie felt a lump on her pec muscle. But she figured it was just from dancing and that she just needed to have it massaged out. Initially she didn’t think it was serious and she was able to keep up with her normal practice schedule with the dance group despite the pain. But by the end of March she started to feel concerned. Around that time, during a lift at practice, she heard something in her sternum pop. She took some time off to rest the injury but the pain continued to get worse until one day she couldn’t get out of bed.
By late spring the lump was visible to the eye, so she traveled back to Maryland, where her family was, to have a mammogram and ultrasound done. Maggie had already had a breast reduction when she was 18, so initially the doctor told her not to worry. They thought it was probably just scar tissue from surgery.
The voice in Maggie’s head was telling her it was something more serious but she didn’t want to believe it.
Dana figured it was an ingrown hair.
Well, either an ingrown hair or a pimple. She was prone to them so it made sense. Especially because she already had a pimple in her armpit. But while in the shower and checking on it, she felt something else. She had never even heard of a young woman getting breast cancer, so when her mind raced about it being something other than the usual suspects, she convinced herself she was being a hypochondriac.
But to be on the safe side she made an appointment with her gynecologist. Before the appointment day came, something came up with her job. So, as a self-proclaimed workaholic, she decided to call and reschedule the appointment. Her normal doctor was unavailable for a few weeks so they scheduled her to see a nurse practitioner sooner, and at that appointment she was reassured it was probably nothing to worry about. But, to be on the safe side, the nurse practitioner felt an ultrasound couldn’t hurt. So it was scheduled for the next day.
The voice in Dana’s head wouldn’t let her believe it could be cancer, but she also wasn’t convinced that everything was ok either.
Holly immediately thought something was wrong.
One day while on Facebook, Holly saw a light-hearted post from the Feel Your Boobies Foundation that said “Feel Your Boobies. Are You Doing It?” And that night in the shower she did, because for some reason this post stuck with her. She felt a lump, it was big, and she just knew something wasn’t right. When sharing this with her tight knit group of friends, they tried to make her feel better by reminding her that it was probably nothing (because 80% of all lumps are nothing). She tried to hold on to this fact for some time, but finally decided she needed to see a doctor.
The voice in Holly’s head wanted to believe her friends, but it kept telling her it was something to worry about.
Janette just knew it was time to start “feeling her boobies.”
It was July 2007 and one of her girlfriends had just returned from a trip to Vegas, where a group of women had gone to celebrate a friend’s end-of-breast-cancer-treatment. Janette was catching up with her friend about the trip and they got to talking about how the woman had found her own lump. Around that same time, Janette read an article about the Feel Your Boobies Foundation that was published in the Kansas City Star newspaper. The article caught her attention because she loved the Foundation’s message and approach and the combination of these two things triggered Janette to “feel her boobies” that day in the shower. She found a lump, and for about a week she just kept feeling it thinking it would go away. When it didn’t, she decided she needed to have it checked so she called the doctor.
The voice in Jeannette's head was telling her it just might be divine intervention that caused her to her find the lump.
Tyrisha’s Story (IN PROGRESS)
Tyrisha was told it was a clogged milk duct, but that made no sense.
When Tyrisha first found the lump, her daughter was 6 years old. So the possibility of it being a clogged milk duct seemed impossible to her. After having the lump dismissed a couple of times by doctors, she was finally sent to get an ultrasound. Coming out of the ultrasound the suggestion was to have the “clogged milk duct” aspirated. But not long after the visit, she learned she was pregnant. So she decided to put things on hold, but was committed to pushing for more tests after her son was born.
The voice in Tyrisha’s head was telling her she needed a definite answer.
Big Lessons from Little Lumps
I’ve talked to so many women about boobs and lumps since my diagnosis, it’s no wonder people call me the “Boobies Lady.” Most women will feel a lump in their breast at some point in their lives and many times it’s nothing (in fact, 80% of the time). Regardless, lumps should always be brought to a doctor’s attention.
So here’s my, I’m-no-doctor-but-I-know-stuff about lumps insight:
Cancer lumps don’t shrink.
Having lumpy breasts is pretty normal. Especially for young women who generally have dense or cystic breasts. The whole reason that feeling your boobies is important is because you need to get to know what lumps are always there and what ones appear that are new. And this only gets more important as women get older because our risk for breast cancer increases with age. Bottom line with cancerous lumps is they don’t shrink. Unlike those that come and go with our cycles, masses that turn out to be cancer will never get smaller. They will only stay the same or eventually increase in size. If you're not sure, then wait for a month until your cycle passes. And if it doesn’t shrink or go away, it's better to be safe than sorry and see a doctor.
Knowing today is better than knowing tomorrow.
Listen, no one wants to find out they have breast cancer. But one thing is for sure. It’s better to find out today that you have breast cancer than it will be tomorrow. Because things only get worse, and putting your head in the sand isn't going to change that. Early stage breast cancer has an over 90% cure rate. So put on your big girl pants and do the right thing.
Think of it like a peanut in your oatmeal.
Cancer lumps are not squishy. It’s not like a cyst you might have in other parts of your body that you can move around easily using your fingers. Cancer lumps are hard. As my breast surgeon once said (love that woman), “Think of it as a bowl of oatmeal. It’s all lumpy. Now imagine there’s a peanut in your oatmeal. You’d be able to tell the difference.” But you can’t know what’s different if you don't know what’s normal. So get hands-on ladies. Or enlist someone to help you out, if you know what I'm saying. Lord knows there are plenty willing volunteers for that!
To biopsy or not? That is the question.
So I’m not suggesting that all lumps need to be biopsied but I am saying it is the only way to know for sure if it’s cancer or not. Unless cells are taken from the actual mass it’s not possible to know with 100% certainly what the lump is. Some studies will say that having a biopsy causes unnecessary stress in women when the majority of lumps come back as benign (not cancer). I don’t know about you, but I’m pretty sure that’s a stress I’m more than capable handling if it means I can stick around for a few more years. If your gut is telling you something is wrong, then push for a biopsy because you are strong enough to face the truth.
Chapter Three: Getting the Diagnosis
The day you receive a breast cancer diagnosis is one you’ll never forget. You’ll remember what you were wearing and exactly where you were.
But the diagnosis isn’t just the day you get the news. It’s filled with weeks of doctor’s visits and tests leading up to the news you were hoping would never come.
But then it’s confirmed. “You have breast cancer.” For a moment, the world freezes and you're only hope is that this isn't really happening.
But, unfortunately, it is.
I found out over the phone while on a conference call for work.
I was in my office in my little house that I did end up buying in that small town I had so eagerly left after high school. Turns out, that voice in my head that started to question the path I was on got louder and louder. So even though my plan to find something bigger and better had worked, that voice was saying maybe it was time to reconsider.
The choice wasn’t easy. Leaving New York City sounded good and terrifying all at once. I had only lived in large cities since college and the energy was like a drug. But in my early 30’s I started to tire of the city lifestyle and started to wonder if the path I was on was one I could see myself on forever. What was next? Buy a condo in the city, settle into my career, and call New York home?
My gut was saying no. My gut was saying it was time for a new plan. A simpler one. One that involved working less, being outside more, spending more time with my parents, and being part of a community. So, in the fall of 2003, I started looking for houses back in Pennsylvania and found a cute little one just blocks from where I had grown up. I never dreamed this would be part of my plan. But little by little my gut was saying it was time.
My house felt like a palace compared to my city apartment and the mortgage was 1/3 of what I was paying in rent. I spent my weekends rehabbing my old house with the help of my parents and started to dig into becoming part of the social scene. I was single, and most of my friends who had stayed local after school were married with kids. So figuring out how I fit in after being gone so long took some time.
About 6 months after moving back, the time came for my annual exam with my new gynecologist in Pennsylvania. I saw a nurse practitioner there and mentioned my lump to her, letting her know that the doctors in New York felt it wasn’t anything to worry about. But she felt differently. She thought it was best to have it looked at, just to be sure.
To be honest, her persistence about having my lump examined took me by surprise. I had settled into believing, like previous doctors had advised, that it was likely nothing. But life has a way of putting angels in your way at precisely the right moments in time. I didn’t know it yet, but Connie (my nurse practitioner) was that angel for me.
It was early spring 2004 and my parents were in Florida for the month so I didn’t mention anything to them about going for the mammogram. I wasn’t really worried about it anyway. I figured it would just be a standard test like every other test I had ever had. In and out, and on my way. But it wasn’t.
I had never had a mammogram before so I wasn’t sure how things normally went but I kind of figured this wasn't it. They kept coming back in to get more pictures of the breast where I felt the lump. They would leave, show the doctor, then come back in to take more images to get a closer look.
After reviewing the images, they told me they wanted to do an ultrasound right away. The ultrasound confirmed the lump was a mass (not a cyst) and that a biopsy would be needed. A what?
On the table that day I remember feeling like I had just been diagnosed, even though I wasn’t officially. The nurses had a serious air about them and held my hand as they explained what was next. Before I left, they asked if I had anyone at home who would be there when I got back. I didn’t.
My biopsy was scheduled for three weeks later (yes three long weeks) so I just tried to put it out of my mind until then. But it was hard. When the biopsy day drew near, I finally decided to tell my parents, who were on their way home from Florida by then. They shortened their trip to get home earlier so they could go with me to the biopsy.
The biopsy hurt—I mean like really bad. Coming out of the biopsy, the surgeon said she really didn’t think it would be anything and that she’d call the next day with results. So I went about my business not feeling overly occupied with it all. After all, if the surgeon thought it was something she would have just said so, right?
The next day, I was on a call for work. Luckily, even with the move back to Pennsylvania, I was able to keep my job in New York. I worked remotely with frequent trips back which pacified my fear of missing the city. I could manage my client projects from afar, which is what I was doing when that call came.
I recognized the number and beeped over, convinced it would be a short “all looks good” kind of convo and I’d get back to the work. But, it was breast cancer. And suddenly, everything she said after that sounded like another language. A language I couldn’t yet speak but would soon become fluent in.
All I heard was cancer. I didn’t hear early stage. I didn’t hear best case scenario. I just heard cancer.
It was April 7, 2004. Just as I was trying to simplify my life, things got really complicated. I was 33. I was single. And I was scared.
Maggie found out two weeks after trying out for the Rockettes.
Right before her Rockette tryout, Maggie went home to Maryland to have the lump biopsied. Then she headed back to NYC in hopes of seeing her dream of becoming a Rockette come true. The doctor told her it would be fine to wait two weeks to come back to Maryland for the results so she figured it wasn’t anything to worry about. She went through with the tryout and, to her extreme disappointment, found out she didn’t make it. Apparently that year Maggie’s look wasn’t the look they were going for so she wasn’t called back for a second audition. She knew there would be other opportunities so even though she felt deflated, she quickly set her sights to the fall, when her dance group was scheduled to perform in China. Maggie was chosen to be a lead dancer in the performance and she couldn't wait.
But then, the time came to travel back to Maryland for the follow-up visit with the doctor about the biopsy. As she recalls it, he just walked into the room and blurted out, “You have breast cancer.” And a few weeks later, after more tests were completed, she found out she had stage 4, metastatic cancer. That news was definitely not what Maggie was expecting to hear.
It was June 19, 2014 and instead of thinking about the reality of the terminal diagnosis she had just received, all she could think about was whether she’d be able to go to China.
Dana found out in the dressing room at Macy’s.
In preparation for her upcoming wedding, Dana was back in Ohio where she grew up. Her bridal shower (and 28th birthday) was the next day and she was out shopping with her mother and mother-in-law to-be for honeymoon clothes when the call came. It was breast cancer. Suddenly a fun day of shopping and dreaming of her honeymoon in Mexico turned into a family meltdown in the Macy’s dressing room. In that moment, nothing felt like it mattered and Dana admits wondering if her husband-to-be would even stick around after hearing the news.
It was Feb 2010. Dana was just turning 28, and instead of putting the final touches on her wedding, she started making plans for her cancer treatment.
Holly found out when she went alone to get her follow-up mammogram.
After her first mammogram, the doctor scheduled a follow-up to look more closely. Holly went alone because she convinced herself it would probably be nothing. Normally her husband would have gone with her but this time she told him she’d be fine on her own. After having the mammogram and then an ultrasound to look more closely, the doctor came back in and said, “What I see is not very good. You have a long road ahead of you.” In shock, all she can remember running through her mind in that moment was, “I have cancer.” Holly cried the entire drive home while talking to her husband on the phone.
It was January 2009. Holly was 39 and all she could think about was her husband and her baby girls (ages 9 and 10).
Janette found out with a house full of kids while hosting a rare play date.
On the day she received the call, her daughters (ages 6, 10, and 12) all had friends over at her house for a play date. Janette didn’t host play dates often so this day stands out in her head for many reasons. It was a Thursday when the call came that confirmed the diagnosis she was dreading. Janette took shelter in her bedroom closet for privacy and started taking detailed notes as the doctor spoke. After hanging up the phone she just cried and then quickly realized she had to pull herself together and arrange for the visiting kids to be picked up. Her husband was on business trip and flying home at the time so calling him for comfort wasn’t an option.
It was February 7, 2008. Janette was 42, and the only thing that kept running through her mind was not wanting to leave her husband and daughters without a wife and mother.
Tyrisha’s Story (IN PROGRESS)
Tyrisha found out while she was cooking a family meal with her mother who had travel from Pennsylvania for a visit.
She recognized the number when the phone rang, so she went into her bedroom to take the call to be away from her kids. When she heard the news she got tears in her eyes. Her son was 3 months old and her daughter was 6. When she came out of the bedroom she told her mom the news directly and broke down crying. And, as Tyrisha says, she made a decision in that moment that there would be no more tears. That she needed to move on and focus on what needed to be done to get better. With so many mis-steps leading up to her diagnosis, she could have easily talked about being angry or placing blame. But when explaining this moment to me, Tyrisha exhibits nothing but grace in her voice
It was April 2, 2009. Tyrisha was married and a mother of two and all she could think about was who was going to take care of her kids.
Big Lessons from Little Lumps
If you think Facebook sets you into an information overload tail spin, a breast cancer diagnosis will quickly make you realize that it pales in comparison. The minute you hear the words, “You have breast cancer,” it’s like you enter a full blown haze that’s a combination of wanting to know everything and wanting to crawl into a cave all at once. And the diagnosis is only the beginning.
The days and weeks following a breast cancer diagnosis are filled with tons of information that
sounds like it’s in a different language and worries that seem to never sleep. To say it’s overwhelming is the most drastic of understatements. Then enter that insatiable need to hop on the internet. Listen to me. Don’t do it. At least not right away.
I’ve learned over time that there’s no one right way to navigate the days following a diagnosis. Everyone is different and everyone does their own type of soul searching. Here are the most common tips I give to women just starting on their breast cancer journey.
The internet is NOT your friend.
I’m serious about this. As tempting as it is to scour the internet about your diagnosis it will not make you feel better. Resist the temptation, at least until you know you’re mentally ready because you’re bound to find something that terrifies you when you least expect it. And girl, you don’t need that.
Interview your doctors.
I don’t mean that literally, but you’ll be walking along side of your doctors for quite some time after your diagnosis and you need to feel like they understand you, respect you, and that you can be your worst around them. Sometimes even the best doctors just aren’t a good fit for the patients they serve. Personalities matter and if you aren’t feeling in sync with your team, then you need to find someone else. Now isn’t the time to worry about hurting someone’s feelings. Thank you, next.
Take a deep breathe.
After being diagnosed, most people feel overwhelmed with wanting to know everything. Like right away. Of course you do. But you just embarked on what will be a long journey, one where things will only truly make sense in time. It’s good to want to gather all of the facts, but realize that it’s impossible to do that on day one or even one week. There will likely be many more tests, surgery, and other stops along the way that will reveal all of the information you need. So take it easy on yourself, and spend the time building up your reserves because this isn’t a sprint. It’s a marathon.
Chapter Four: Telling People
Telling people sucks. Because it makes it real.
It’s especially hard to tell the people closest to you, but sometimes telling acquaintances can be even harder. And, if you’re doing chemo, you don’t even have the choice about whether or not to tell people because losing your hair will give it away.
It can feel like you’ve completely lost your privacy and have become a sitting duck just waiting for what random thing someone might say. And usually it’s on a day when you’re already feeling pretty broken.
The uninvited stories and stares from strangers can be just as hard as the treatment itself.
So brace yourself.
After I told my neighbor she said, “Well no wonder you’ve been looking so haggard.”
Yeah, thanks for that. The conversation was bad before that though. She had just finished telling me I looked like my 60 year old mom with my new haircut and asked, in an I-don’t-really-like-your-haircut kind of way why I had decided to get it cut short. I told her that I had just been diagnosed with breast cancer and cut my hair because I was starting chemo. And that’s when she informed me about not looking my best.
Of course this is the same neighbor that assumed I was a lesbian because I bought a house on my own and had lots of old girlfriends coming to visit after I moved in. Like I always say, it’s not illegal to be a jerk. They are everywhere, and your current state will act as a magnet for them. So put your armor on.
The only thing harder than getting cancer is telling people you have cancer. No lie.
When I received my diagnosis, I was alone and the thought of telling people was terrifying. Especially my parents. The very first thought I had after hanging up the phone with the doctor was having to give this news to them. So, I drove around in my car for quite a while before eventually going to their house to tell them. It was something no parent imagines they will hear. But, because they are rockstars, they immediately put on a brave face, when I’m certain that inside they were probably more scared than I was. Then a few weeks later I had to tell my brother. He was coming home from New York City for Easter and I wanted to wait and tell him in person. I picked him up at the train station and his innocent smile while getting in my car made me want to cry. He had no idea yet.
In the weeks after my diagnosis, I remember that everything annoyed me. Small talk was annoying. Deep conversations were annoying. Talking about breast cancer was annoying. Not talking about breast cancer was annoying. Being alone was annoying yet having people around was annoying too. Looking back at this time I think it’s safe to say I was a hot mess.
And at the same time as I was finding all things to be annoying, I was faced with having to share the news with other people, mostly strangers. Very annoying.
Telling people meant fully accepting my reality. It meant thinking and talking about dying. And I didn’t want to think about that. No one did. But we had to. Looking back, telling people made me stronger. But early on it just made me mad.
Maggie wasn’t planning on telling anyone other than close friends and family.
On the day she was diagnosed, she stuck with her plan of taking the train back to New York City. When she arrived back at her apartment, a family friend who was staying with her asked how the appointment went. Maggie just broke down crying and shared the news with her. By some stroke of cosmic karma, this person was training to be an eating disorder specialist for dancers and was well versed in the psychological side of dealing with illnesses. Maggie explained that she wanted to keep the news private, but her guest pushed her to get comfortable with telling people even though she didn’t want to. Maggie also leaned on a few dance mentors she kept in touch with who too encouraged her to use her diagnosis as a platform.
So, the next day at practice, she took their advice and told the other dancers in her group. Their first concern was how they could help and they continued to be supportive as things unfolded. Suddenly, this shy young women was sharing her story more widely than she ever imagined.
Telling people has, in fact, become Maggie’s platform. She has been featured in films, on TV and in national publications. What was once something she was determined to keep private, is now something that she shares openly. She feels empowered telling her story, and others gain strength from her willingness to do so.
Dana didn’t have a choice about how she told people. The day after receiving her diagnosis Dana had to walk into her bridal shower and share the news. It also happened to be her 28th birthday.
Dana describes it as the worst and best day of her life. She was surrounded by those she was closest to, and while lots of tears were shed she remembers there was a lot of laughter too. Her girlfriends joked about Dana finally being able to get the big boobs she had always wanted. The day, while not at all the day she had planned for, turned out to be therapeutic and exactly what she needed. After all, her life in Colorado was just getting started and she and her boyfriend didn’t have a lot of close friends there yet. If she would have received the news while back there, she now realizes she would have felt very alone.
Looking back, being forced to share her news immediately was the best way it could have happened for Dana. She wonders if she would have even been able to get out of bed if she would have found out while back in Colorado, far from her family and friends.
Holly hated telling people because she just wanted to be Holly. Not Holly-the-cancer-patient.
When reflecting on delivering the news to her daughters, she remembers that she and her husband decided to wait until they had the full diagnosis and treatment plan before sitting them down. They explained that mommy has something in her breast and that she’s going to take medicine and the doctors will take care of it. Laughing she talks about how differently her daughters reacted. Her oldest, in her very matter of fact fashion, followed Holly into the bathroom after hearing the news and said directly. “Ok so the doctor’s just give you medicine and you’ll be ok, right?” Holly said yes and that was all her daughter needed to hear. She believed her mom would be ok. Her youngest, however, never talked about it again.
For Holly, telling people was like constantly reconfirming she had cancer. It was also followed by what she felt was a pity party for her, which was not what she wanted, but it’s what happened.
After telling her 6-year-old, her daughter profoundly said, “Well if there’s something in your body that shouldn’t be, then why can’t you just poop it out?”
Good point little lady. If only it was that easy. Janette and her husband decided to tell their older daughters, ages 12 and 10, separately from the 6 year old because they felt like the older girls could process more details about what was going on than the younger one. So, when sitting down with their 6-year-old, they were cautious with their language simply saying that mommy has something in her body that shouldn’t be there and that she is going to go through treatment to take care of it. And then, that memorable nugget came floating out of the wee one’s mouth, and all tension that had been in the air before disappeared. To this day, Janette cracks up telling that story. Gotta love kindergartners.
Outside of her family, Janette recalls immediately knowing that telling others was something she just needed to do. She was lucky enough to live in a tight knit neighborhood and she knew if she opened up that her community would “pour love in.” And that’s exactly what happened.
Tyrisha’s Story (IN PROGRESS)
After tearing up when telling her friend Ericka the news, her friend said, “Girl, did they tell you you gonna die? No? Well then, let’s get on with this!”
Her friend Ericka’s response pretty much summarizes the attitude Tyrisha decided to keep throughout her journey. At work, when telling her supervisor the news, the woman confided in Tyrisha that she was currently one year out from breast cancer and that her hair was short because it was just growing back. Tyrisha had no idea.
For Tyrisha telling people gave her strength and it gave them permission to open up to her
Big Lessons from Little Lumps
Telling those close to you is the hardest in some ways. Because you love them and they love you. Everyone is scared but trying to put on a brave face and stay strong. But telling acquaintances or strangers is a whole other sideshow that could easily create volumes of content on which Saturday Night Live shorts are based. People are really something and cancer can really help boil the doozies right up to the surface and inevitably they will swim your way. Keep your sense of humor because someday you’ll be able to laugh about it…really you will.
Some things to keep in mind when you start to tell people you have breast cancer:
Get ready for the “look of death.”
For most people diagnosed with breast cancer, they don’t feel sick. But you only have to receive the “look of death” once to be reminded that in fact you are sick…like really sick. Let’s face it, cancer is serious stuff. And although you might realize you’ve been diagnosed with early stage and very treatable breast cancer, when telling others its inevitable that they will react as though you’re on your death bed. Because to most people, cancer = death.
Warning: I might go cra-cra on you.
People say really stupid things…like a lot. They also talk about really stupid things too. In fairness, it’s stupid stuff you mostly likely thought was interesting at one time too. But while you’re going through breast cancer your threshold for meaningless conversation is pretty low. After all, you’re operating on very little brain space because it’s consumed entirely with that life or death thing. So you should be aware (and might want to warn others) that obsessive analysis of “The Bachelor” could suddenly—and without warning—become unbearably annoying to you and you just might snap. You’ll feel bad about it later and they’ll understand (I promise), but don’t say I didn’t tell you so.
The “I know someone who beat breast cancer but…” stories.
If I’ve heard one, I’ve heard a thousand of these stories while in treatment. You know, the stories where someone tries to make you feel better by telling you they know someone who beat breast cancer (awesome!)…but then go on to tell you that the cancer returned in their bones years later (not so awesome!). So basically what they’re saying is the person DIDN’T beat breast cancer, but that they now have terminal cancer. Yeah. And these days that’s pretty much your current worst nightmare. So even though they were trying to make you feel better, you spend days convincing yourself of all the reasons why this won’t happen to you.
The “There’s this new treatment you should try…” people.
When I was diagnosed, my breast cancer was pretty much the bread and butter of cancer. Fairly normal and treated basically the same way in most cases. I felt really confident about my treatment plan after discussing it with several doctors, until the peanut gallery piped in. It didn’t happen all the time, but when I least expected it I would get an earful about “how chemo is so bad for you” and how “I know someone who cured their cancer after going on a smoothie diet.” Ok, thanks for sharing, but cancer is worse for me than chemo and I never liked smoothies before cancer…I’m certainly not gonna bank on them as a cure now. (PS. I mean I ran marathons dude. I’m no stranger to health kicks.) Point is, whatever path you choose (even if you choose the “smoothie” path) people will be happy to tell you all of the other treatment or surgery options that are better. Find your thick skin and tame your tongue…you ain’t got time for those battles.
Chapter 5: Facing Big Questions
The questions you will face in the weeks following a diagnosis aren’t just big, they’re huge.
Like whether or not to remove a body part. Or if you’ll lose your fertility. Or if you carry that breast cancer gene. Then if you do carry it, that brings with it a whole load of other life or death decisions.
And often these questions have to be answered quickly, when your state of mind is anything but clear.
But sometimes, these questions don’t ALL have to be answered at once. Sometimes you can tackle them one at a time. And focus only on the ones that, for you, are the biggest ones. Some decisions can’t be reversed. So take the time you need to be sure you can live with what you choose. And remember, the choices are yours. No one else’s.
Remember, these choices are yours. No one else’s.
My biggest question was, “will I be able to have kids?”
In the days following my diagnosis life got pretty complicated. The planner in me got frustrated. There were so many questions that no one could answer for me. Would I get married? Would I have kids? And most importantly, would I live? I wanted answers and I wanted a plan. And neither one those things were possible. Not right away.
You see, sometimes when everything seems uncertain, the only you can do is trust in time. I was never very good at this. But I was learning pretty fast.
In time, I learned that my breast cancer was very early stage, and that my prognosis was extremely good. I wanted to believe all of that, and moreso I wanted it to make me feel better, but it didn’t. Not immediately.
My lump was small, slow growing and determined to be Stage 1. So I had a lumpectomy. Then 4 rounds of chemo, 7 weeks of daily radiation. Then finished the party with 5 years of Tamoxifen.
Throughout the process, the only big question that kept coming up for me was how to ensure I preserved my fertility as best I could. Having babies wasn’t in my near future, I wasn’t even married yet. In fact—I hadn’t even really decided for sure that I wanted kids. It was still something I thought about in the future tense. But I didn’t want to look back and realize that I made some decision inadvertently that would impact my ability to have kids at a later date if I chose to.
Because I expressed this as a concern, I was able to take some extra time before starting treatment to look into options. Freezing unfertilized eggs wasn’t possible in 2004 so my options were more focused ovarian suppression to conserve any eggs floating around in there. I decided to take Lupron shots monthly to shut my ovaries down during chemo and was glad that my oncologist was patient enough to help me look into options instead of pressing forward to start chemo.
And just a few months after completing chemo, my cycle returned. Well, how about that!
Maggie’s biggest challenge was convincing the doctors she didn’t want reconstruction after her double mastectomy.
You’re average 23 year old is acutely worried about their body image. But there’s nothing average about Maggie. Quite simply she’s a remarkable human being with strength and wisdom well beyond her years. But even with her clear convictions expressed, it was hard for her to convince the doctors of this. It’s probably safe to say that Maggie’s doctors had not dealt with many 23 year olds with breast cancer. But they had most likely dealt with other young women whose primary concerns centered around wanting their bodies to be back in tact after surgery.
That wasn’t Maggie. As a dancer, her large breasts were always something that she hated. Before her breast reduction at age 18 she was a size G and even after the reduction she was still a size D. When facing a double mastectomy, she knew with certainty that reconstruction was not something she wanted. But the doctors encouraged her to consider otherwise, until she stood firm in her stance.
In the end, Maggie did not get reconstruction and she has never looked back or regretted her choice.
Dana’s biggest concern was being able to get married.
Dana’s big day had to be canceled because the doctor’s felt it was important to start chemo right away. Of course, she was not happy about that. But she decided that one way to help her focus on life after breast cancer was to set a new wedding date and use that as her motivator to keep going. Her original wedding was scheduled for May 2010 and after talking-to the doctors about her treatment plan, she picked a new wedding date in May 2011. She informed her doctors there was no way she was changing it. Period. And she wasn’t kidding.
Dana’s last day of chemo was just 30 days before her new wedding date. On that day, her port was removed (not without issue however) from her arm in just enough time to heal before the wedding.
And a month later, she walked down the isle with her newly returned hair styled in a pixie cut, brand new mastectomy tattoos peaking out of her wedding dress, port site fully healed and surrounded by all of the same friends and family that were there a year prior when she shared the dreaded news. That day was much more than a wedding for Dana. It was a day that symbolized the start of a new chapter in life. One without cancer.
Holly’s biggest challenge was choosing the right doctor.
To Holly, choosing the right doctor felt like a life or death decision. So she reached out to all of her friends, including those who were doctors, to get recommendations on the best breast surgeons in Phoenix. She narrowed her choice down to two doctors and had a ton of questions for each to help her make her final decision. When one of the doctors called her on Super Bowl Sunday to address all of her concerns, she knew she had found the perfect doctor for her. And once she made that choice, she trusted in him for all future decisions. In one case, her husband felt strongly about Holly considering having a double mastectomy to ensure the cancer wouldn’t return. But the doctor took time in explaining to him that in Holly’s case she was a perfect fit for a lumpectomy. And because both Holly and her husband trusted the doctor’s expertise, they moved forward with his suggested path.
Taking time to choose the right doctor, for Holly, was what made her have peace in all other decisions that followed.
Janette struggled with whether to have a single or double mastectomy.
Her initial gut reaction following diagnosis was to have a double mastectomy. But after learning she was negative for the BRCA (breast cancer) gene and, at the recommendation of her surgeon, she decided on a single mastectomy. Her biggest challenge with getting surgery scheduled was aligning schedules between her selected breast surgeon and plastic surgeon. She felt strongly about using these particular doctors, but also wanted to move quickly with having the cancer removed. So, instead of waiting to get their schedules aligned, she elected to have two separate surgeries - one to remove her breast, and the second to put in the expanders. Even though those procedures are often performed during the same surgery, for Janette waiting wasn’t an option.
As Janette reflects now, she says if she had it to do over again she would probably have gone with a double mastectomy. Partly for aesthetic reasons and partly for peace of mind.
Tyrisha’s Story (IN PROGRESS)
Tyrisha’s main concern was fertility because she always wanted to have a lot of kids.
During the time of her first diagnosis she was 26, with a 9 year old daughter and 3 month old son. But she hoped to go on to grow her family even more in time. When she pursued the possibility of having her eggs harvested she quickly came to the realization that she couldn’t afford it and tried to start coming to terms with the possibility of not having any more children.
Tyrisha didn’t question the surgery and treatment path the doctor laid out for her. After having the doctor ask her “Do you want to see your kids grow up?” she knew she would do whatever it took to get through it.
Big Lessons From Little Lumps
You are about to embark on the longest months of your life trying to reconcile and make sense of all of the things that come your way all while attending to that voice in your head that is just flat out scared. From medical decisions, to your mental health, to managing your relationships with those around you. Getting through breast cancer is a full-time job.
Before you spontaneously combust from seeking answers to all of your questions, take a deep breath and take it one day at a time.
You don’t have to decide on everything TODAY.
If there’s one piece of advice I can give you it is to find ways to “stop working.” By that I mean, find ways to give your brain a break. There’s only so much you can possibly process on any given day, and sometimes there are things that can actually wait until tomorrow. Early on in my breast cancer diagnosis, it felt like I was faced with a thousand decisions and that all of those decisions had to be made today. Like immediately. But they don’t. Some decisions can wait for a bit while you tackle the critical decisions. The road ahead is long. So set the pace to one that doesn’t exhaust you because you’re gonna need all the energy you can muster for the days ahead.
Remember, it’s YOUR plan, and no one else’s.
So while you’re navigating through all of the decisions you have to make, you’re hearing all kinds of stories about your neighbor’s college roommate who did this or your husband’s co-worker who did that. Just politely tune that noise out…or maybe just tell them to shut it. Whatever works, my friend. You’re soon going to have to decide on some pretty major things. Like whether or not to keep your breasts. Ok that’s kind of a big thing. I mean, for god’s sake, that’s a body part! Then there’s all of those other questions…what treatment is best? Should I get genetic testing? What if it comes back positive? Will I go into menopause? Should I preserve my eggs? Will my cancer come back? Oh right, that life or death thing. For every person you talk to you’ll get a different answer (most likely) so be confident in the plan you choose, because it’s yours. And last I checked, you’re the only one that lives in your body.
Be honest with your doctor.
It may feel like your plan of attack is being mandated to you and that you have very little say in the mix of it all. My experience is that should not be the case. You should very much be a part of the dialogue around the path you choose to take through this. If you have certain concerns because of something you’ve read, share that with your doctor. If you feel like you need a few more weeks to decide on something, share that with your doctor. If other parts of your life are falling apart, please share that with your doctor. Unless you communicate with your doctor they can’t work with you on adapting the things that can be adapted. It’s important that you feel confident throughout this journey, so remember that not everything is set in stone but you won’t know that unless you ask.
Your boobs can look normal, even after surgery.
I was single when diagnosed and therefore pretty concerned about how my surgery would change my body (unlike my idol Maggie!). I have super small boobs so the idea of taking any amount of my boob off seemed impossible without making it look concave. As I entered the operating room I remember looking up at my surgeon and saying “I have two words for you….bathing suit.” And to this day I feel normal in a bathing suit, and even naked for that matter. My lumpectomy scar is almost invisible and visually I think my boob looks pretty darn good. How’s that for admitting some vanity?
Chapter Six: Going Through Treatment
Let’s face it. Breast cancer treatment is scary. The word chemo itself brings about a mental picture of sick, bald people hooked up to machines. It also brings about the anticipation of getting sick and living an overall crappy existence for its duration.
And, for some, that is the case. But not for all. Whether treatment is fairly short, longer than you’d hoped, or will be a part of your life for the rest of your life, it’s important to find ways to mark your progress. To remind yourself that you’re getting through it.
Because you are. One treatment at a time, you’re moving along.
To whatever is next.
Heading to my first chemo treatment my mom said, “Think of it as weeding a garden. You’re just getting rid of the bad stuff to make room for the good stuff."
My parents drove me to the appointment. It was spring, and everything was in bloom. Then, my mom, who always has a “look at the bright side” kind of attitude delivered that seed of wisdom out of nowhere. As you might have gathered, she’s an avid gardner, but the metaphor was a good one and it helped me reframe how I thought about what was to come. So we planted wild flowers from seeds on my first day of treatment in May, and watched them grow throughout the summer as my treatments passed one by one.
Going into chemo, I didn’t really know what to expect. Honestly, I think I assumed my life would turn into greyscale and I would be couch bound for the duration of treatment. I knew I’d lose my hair but I wasn’t too concerned about that. (Except that my hair at the time was really long and I just spent $300 to get it colored…now that bugged me.) I always had really short hair growing up so the idea of losing it didn’t feel all that much different than getting a haircut. However, I was really concerned about the throwing up part. I pretty much throw up at the suggestion of throwing up so if I was convinced of anything, I was sure I’d be the green-faced person starring in my greyscale life.
One thing I do remember when starting chemo is that I had a few questions for the oncology nurse. They were very important questions: 1) Am I allowed to drink? and 2) Can I still eat sushi? I mean, these are things you need to know. And the answers? Well, she told me I could drink as long as I didn’t show up hungover to chemo (I liked her already), and I honestly don’t remember what she said about sushi. But I do remember that I ate it during treatment while enjoying an ice cold Sapporo.
The actual process of getting chemo was a little intimidating. Especially because I suffer from needle phobia (yes that’s a scientific term). So the idea of being poked and prodded through treatment was terrifying to me. Let’s put it this way, in high school I was in charge of organizing the blood drive for our entire school and didn’t give blood. I was conveniently “sick” that day. Yeah, that kind of needle-phobe.
As they explained the process, they said my treatment would take about 3 hours from start to finish and would largely be administered through an IV drip (which resulted in my throwing up in my mouth a little). So during that time, while all of the meds are being pumped through your body, you have a lot of time to sit in the treatment room and think and observe. It’s a weird part of the journey for sure.
As I looked around at the others getting chemo I felt both grateful and guilty. I felt grateful because some of the people that were receiving treatment (generally for all types of cancers) were extremely and gravely ill. And at the same time I felt guilty for being thankful I wasn't in their shoes. It's like you're thinking "why me?” and "why not me?” in the same thought.
The last step of my breast cancer treatment was radiation. Every weekday for 7 weeks I would go to the office for a quick (I mean like 120 seconds quick) zap of radiation to my lump site. It didn’t hurt or cause any side effects for me, but having to be at the same place every day was so super annoying. I couldn’t go out of town overnight at all and it frankly just really screwed up my schedule. But at the end of those 7 weeks, I realized that the nurses and doctor there had become like family. Every day, if only for 120 seconds, I’d show up and we’d talk about their kids or my crumbling relationship. Some days were good and full of smiles, and others not so much. But, like family, we lived through those 7 weeks together. And then like that, it was done. My new “family” was no longer a part of my day-to-day and though I had counted down the days in anticipation of putting this behind me, one thing I didn’t prepare for was the feeling of loss that came in the days after my final visit.
The first week after treatment ended made it feel like there was a huge void in my day to day. As much as I wanted my treatment to be over, once it was it took a lot of getting used to. Part of it was about realizing I had basically done all that I could do. Treatment was over and now it was just about hoping it worked. Part of it was about being constantly in touch with doctors and knowing that someone was always monitoring my health. But when it was all done, I had to learn on my own how to trust my body again. I couldn’t run to the doctors every time I felt nervous. I just had to learn how to live my life with a constant unknown looming out there.
For me, that was much harder than the treatment itself.
Maggie’s cousin had previously gone through treatment for leukemia so she took on the role of her cheerleader during chemo.
Before starting chemo, Maggie felt pretty overwhelmed with not knowing how things would go, how she would feel or how she should prepare. Luckily, for Maggie, her cousin took care of all of that for her. Because she had gone through chemo herself, she knew exactly how to help Maggie. She brought banners to her chemo room, reminded her to bring a blanket and slippers to be comfy and prepared goody bags to give her on treatment days. Along with her mother and other family members, Maggie just remembers all of them trying to make her treatment days fun. Looking back, instead of thinking of her treatment days in a negative way, Maggie is grateful for the time she got to spend with them playing games and catching up.
At the end of treatment, Maggie was excited to be able to “ring the bell.” Ringing the bell is a celebratory ritual marking a patient’s last day of chemo. But to Maggie’s disappointment, this didn’t happen for her on that day. Because her treatment wasn’t actually over. After her primary treatment ended, her maintenance treatment for metastatic disease began. So instead of ringing the bell that day, the nurses said, “See you in 3 weeks.” Maggie’s new normal was starting to sink in.
Today, Maggie still hopes she can ring the bell someday when it’s confirmed that there is no trace of active disease in her body long enough to consider her in remission.
Dana expected her treatment to just be a blip on the radar screen of her life.
She attacked cancer like a bull with laser focus on putting this all behind her after getting married. She continued to work and tried to just keep going about her life as usual. But at her 4th chemo treatment, her white blood cell count crashed. To boost her levels back to a safe range, she needed to have several platelet transfusions. Her last reconstructive surgery was coming up and unless her levels went up it would need to be rescheduled. Her doctors explained it would be too dangerous to do surgery because her blood was not able to clot properly and that put her at risk of bleeding during the procedure. But Dana was on a schedule with destination wedding on her mind, and once her platelet count got even remotely close to the safe range she pushed her doctors to consider going ahead with the surgery. The doctors agreed to move ahead once her levels began to increase but explained the risks and put the necessary precautions in place in the event that something went wrong.
Looking back, Dana acknowledges that she was probably focused on the wrong things in that moment because she so desperately wanted to stick to her wedding date. And while the surgery was completed successfully, she wishes she would have been a little more rationale and less rigid about sticking to her plan. I mean, don’t all brides-to-be get a little bit crazy??
It was was winter time when Holly began chemo.
She remembers this because there is a huge tree in her backyard and all of the leaves were falling off. But little by little as her treatment days came and went, leaves started to appear on the tree and birds would come and sit in it. As the weather got nicer, Holly would sit and watch the tree get further into full bloom and started to think of it as her “tree of life.” As a metaphor for what she was going through; representing a new cycle of life and a reminder that things can bloom again.
The treatment itself kicked Holly’s butt. If anything could go wrong it did. And while struggling to get through treatment she also had to reluctantly relieve herself of the day to day mom duties that she so loved. Being a mother was the center of her life and taking care of her daughters meant everything to her, and needing to lean on her (wonderful) husband to help wasn’t an easy reality for her. It was a blessing and a curse at once. A blessing because she was so thankful to have such a supportive partner, but a curse because everything that brought meaning to her day-to-day life was gone. At least temporarily.
On the last day of her treatment Holly remembers sobbing with joy. She told me she felt like she was “someone who go out of Vietnam and was on her way home back to her “normal” life.”
Janette’s most memorable moment during treatment, as she puts it, is when she realized she was “shedding like a golden retriever.”
She didn't want to shave her head right away, but when she started to find her hair in her family’s food and all around the house in clumps, she knew it was time. Losing her hair was the second time she remembers crying really hard throughout her journey (the first was the day she was diagnosed). But once she came to terms with losing her hair, she bought a wig and cut her hair to look like it and her daughters threw a hat party for her to make sure she had plenty of options to choose from. One of the things Janette recalls feeling so grateful for was a friend who would take one of her daughters overnight on the day before treatment just to make her life a little easier.
Janette admits she didn’t expect to be so emotional about losing her hair and looking back is a bit ashamed that vanity played such a large part in her emotional state. But let’s face it, hair is kinda important. No shame in being a little (or a lot) traumatized by losing it.
Tyrisha’s Story (IN PROGRESS)
Tyrisha unexpectedly met a forever friend during chemo.
When checking in for her first treatment, the nurse said, “I know this is probably not the right time to tell you this, but there’s a guy here who keeps bugging me to give you his number.” Thinking back on that moment, Tyrisha laughs remembering that she was thinking, “I don’t have time for this right now!”
But at the end of her first treatment she remembers leaving the room and that Shoun, the interested party, was standing there just smiling at her. Over time they built a really special friendship that she has maintained over the years.
That friendship reminds Tyrisha that you just never know who is watching you and who you might gain strength from.
Big Lessons from Little Lumps
Whether it takes its toll physically or mentally, chemo is no joke. Whether you’re doing chemo for early stage breast cancer or metastatic disease, going through chemo will humble you. It reminds you that you do not have the common cold, and that what is living inside of you is deadly. Some side effects are common knowledge and others are unexpected and just sneak up on you out of nowhere.
Here’s my take on chemo:
You don’t just lose the hair on your head…know what I’m sayin’?
I’m saying you lose every piece of hair on your entire body. Even the hair you didn’t realize you had, like on your forearms and in your nostrils. The upside…you won’t have to shave or wax for awhile (extra bonus if it’s in the summertime!). The downside…your nose will be constantly dripping which is kind of nasty (so that’s what your nose hairs are for!), and you’ll also realize that your eyebrows aren’t just there to be on fleek, they actually have function too. To keep sweat from rolling off of your forehead and into your eyes. Well how about that?
Your mouth will taste like you’re sucking on a metal pipe.
During chemo my mouth was so dry I could hardly stand it. Even though I would drink a gallon of water the night before chemo (highly recommended) the dry mouth prevailed. And on top of that the meds left a strong metal taste that was disgusting. Stock up on water, gum, and breath mints because you’re gonna need them.
Chemo gets a bad rap.
So my life didn’t turn into greyscale after all. In fact I didn’t even throw up. Not once. And I even continued to run during treatment. Now I wasn’t breaking any records and for sure I wasn’t feeling 100% but I was living my life in full color and it certainly didn’t come to a complete halt.
It doesn’t kill foot fungus.
So apparently chemo kills cells that can kill you, but it can’t kill foot fungus! What the? It made my hair fall out and my nails stop growing, but my foot fungus?!?! No go. Yeah, I’m one of those people that always has some version of nastiness going on on my foot and not even chemo could kill it. Now go shop that little nugget of wisdom around.
Chapter Seven: Recognizing Depression
Breast cancer treatment focuses primarily on getting rid of cancer. But often it overlooks the impact that this process has on a person’s mental state.
Depression can strike at anytime throughout the journey. It’s common and it’s debilitating. And while some might not experience it as part of their breast cancer journey, many women do.
Facing a life or death diagnosis changes everything. And your brain is one of those things. Learning how to deal with your “new normal” isn’t easy. And even when you think you’re ok, you just might realize that you’re not.
Don't ignore it. You’re not alone. And there is help.
The bottom didn’t fall out for me until it was all over.
I skipped through breast cancer treatment like a boss, physically anyway. My lumpectomy left me a boob that looked pretty darn good. I ran during chemo. I got super skinny and felt like a rock star. Radiation was a non-issue, and I had no side effects from Tamoxifen. Oh, and I had Stage 1, best case scenario cancer. So once treatment was over, I figured I’d skip right back into my normal life. No. Big. Deal.
Yeah, think again. I was a nightmare after my treatment ended. Pretty much everything pissed me off. Work pissed me off. People trying to understand me pissed me off. People who didn’t try to understand me pissed me off. The TV pissed me off because everything was dumb. And my then “boyfriend” pissed me off because he ended things right when my treatment ended. Nice timing dude.
Before I alienated the general population, I came to terms with the fact that I was pretty severely depressed. It was probably my low point. I was insubordinate at work (though that probably wasn’t the first time) and just really couldn’t make sense of things.
Enter Lexapro. Enter therapy.
I didn’t like admitting that I needed help. I mean I made it through treatment. What could I possibly need help with now? Yeah, well I’m pretty good at fighting myself. But little by little I let my defenses down and got to work healing the part of me that I ignored during treatment—my brain and all of the emotions that come along with processing a cancer diagnosis.
For me, I needed to take three full months off of work to repair myself. I called it my “be nice to Leigh” phase and went to weekly counseling and got weekly massages. I just slowed down and started to learn how to be more compassionate with me. I never expected things to be that hard, but they were.
You see, it wasn’t just facing all that had happened with breast cancer. It was facing all of the reasons my personality made it hard to get back to normal. I learned so much about aspects of me that have been hard for me throughout my life for various reasons. I’m a fixer, a problem solver, an overachiever…and I completely exhausted myself trying to solve the unanswerable question. “Would my breast cancer come back.”
I had to learn to live with the idea of not having immediate answers. The idea of enjoying today without knowing what tomorrow held. And while I might have thought I was living my life that way already, I learned in the harshest of ways that I was only fooling myself to think I had been.
Maggie fell into a funk after her friend’s mother passed away from breast cancer.
For the first year after being diagnosed, Maggie felt like she was dealing with things pretty well. Then, when her college friend’s mother passed away that all changed. She went into a pretty deep funk. You see she and Maggie had been diagnosed within weeks of each other and she considered her to be like a second mom. She passed away just before Maggie’s first breast cancer anniversary and was the first person Maggie had known to die from breast cancer. For 6 months, she just couldn’t shake it. It hit her hard because it made it real.
She didn’t expect to be so impacted by her death. Maggie realizes now that it was during this time that she finally accepted that she too would be dying from this disease. But knowing this woman wouldn’t want Maggie to be sad about her death helped Maggie eventually get out of the funk and accept that death is a potential part of her journey.
Dana didn’t feel depressed until a full year after her treatment was over.
Well actually, she ignored her depression for a large amount of time, so she was probably depressed before she actually accepted it. She describes it as building a fantasy castle around herself to make her and those around her believe everything was going to be fine. She even wore that mask of strength during therapy, admittedly lying to her therapist about her mental state.
It all came to a head one day when she realized she hadn’t heard from one of her cancer friends in awhile. She had been diagnosed around the same time as Dana as was a similar age. They had bonded over their experience and as Dana began launching her new business they would brainstorm names and share ideas about how to get it started. When she looked on Facebook to see what her friend had been up to, she found out that she had passed away. Her fantasy castle came crumbling down and she lost it.
Dana wondered why her friend died but not her. The reality made Dana open up and finally expose her vulnerability to her therapist, who was surprised at the depth of Dana’s depression. You see, Dana had become masterful at wearing that mask to hide what was really going on.
For Dana, healing from cancer meant not only allowing time for her body to heal, but also taking time to focus on healing herself emotionally. And becoming vulnerable after the death of her friend was what allowed that process to truly begin.
One day, while sitting on her couch watching her husband and kids go out the door, Holly realized she was depressed.
During chemo, Holly really had a really rough time. In the two weeks between her treatments there were only about three days that she felt human. The rest of the time she was so wiped out she couldn’t do much of anything. And on that day, while watching her family leave, she remembers feeling like she just wasn’t a part of life anymore. Her husband had taken over being the care taker for the family, which traditionally had been Holly’s role. And while grateful for having a wonderful husband, she felt displaced.
Once treatment ended and Holly started to feel more like herself, an odd thing happened. Now that she was able to regain her role as the care taker, her husband began to struggle with where he fit in. And soon, they realized as a family that they were all a bit depressed. So they made the decision to attend counseling together to learn how to navigate their new normal as a unit and to understand exactly how it impacted everyone not just Holly.
For Holly, this was first time she realized that depression can truly be paralyzing. And for her this has helped her be more compassionate with those in her life that struggle with it.
Janette’s Story (IN PROGRESS)
The bottom fell out for Janette when….ADD HER CONTENT FROM EMAIL
Tyrisha’s Story (IN PROGRESS)
Depression hit Tyrisha hard when her double mastectomy kept her from being able to hold her infant son.
Following surgery, Tyrisha had to take some time to let her body heal from surgery. But because of her healing scars, she was told she shouldn’t pick up her son. So when he would come to her she had to push him away. He was three months old and all she wanted to do was cuddle him him but couldn’t. So he started to go to Tyrisha’s mother for comfort instead of her because he became conditioned to know that she would hold him. But then after her scars healed and she was able to lift him again he wouldn’t come to her. When Tyrisha was well enough to manage on her own, her mother went back home to Pennsylvania and it wasn’t until then the bond between mother and son was able to begin.
For Tyrisha, watching her son be comforted by someone else because she was healing from cancer was crushing. It took time to make up for the bonding time that was lost, but they did.
Big Lessons from Little Lumps
If there’s one thing I wish more people talked about related to breast cancer it’s depression. It’s real, it’s common, and it’s painful. Getting back to “normal” (whatever normal is) takes some time. Let’s face it. You’ve gone through something that has forever changed you. Meanwhile, the outside world has been chugging along watching the latest not so realistic reality show, unaware that you’ve been starring in your very own, very real life drama called breast cancer.
Coming of out of the fog is tricky. If you went through chemo, first and foremost you’ll be navigating a new hairstyle for a while. If you took some time off of work, once you start getting back into the groove you will likely feel super annoyed by some of the standard office crap that may not have bothered you before. If you lost or gained weight during treatment you’ll either be bummed that your new skinny body won’t stick around for long, or you’ll be obsessed with figuring out how to shed those extra pounds that are driving you crazy.
One thing is for sure. Ignoring your depression will not make it go away. Here are some tips about how to take the first steps to getting your mental state back in order.
Pretending you feel ok is like walking on a mine field.
You can only pretend you feel ok for a period of time. Things will get worse. Acting like it’s not an issue just prolongs getting to a better place where you can be the best version of you. Look, you got through breast cancer…admitting you’re depressed isn’t gonna kill you.
Who doesn’t need a therapist?
I mean really, we’re all a little nuts right?!? So, if you haven’t already, why not make friends with a therapist and invest the time and effort in yourself. You have to live with yourself now for a while now (god willing) so may as well like the skin you’re in.
Beware of the un-counseled folk.
You may feel enlightened by what you learn in counseling, but not everyone is as brave as you. Beware that your new boundaries may feel foreign to some, and your sudden ability to carve out time for yourself may seem selfish to others. It’s not. Embrace what you learn. It’s a gift.
Lying to a therapist should be illegal.
Listen, if you take the time to go to counseling, do yourself a favor and be honest. Sharing a filtered version of your life with your therapist is like cheating on a diet. You only get out of it what you put into it. If you’re not ready to be honest with your therapist, then don’t waste your time and money. Just stay home and eat a donut.
Chapter Eight: Practicing Self-Care & Embracing the “New You”
Self-care is not about being selfish. It’s about being in touch with what you need to tackle each day with a full tank. Running on empty isn’t good for you, or anyone around you. Put yourself first. It’s time.
And in time, a “new you” will emerge. You see, the old you left this world on the day you were diagnosed. She left without warning and she will never return. I’m sorry to be the bearer of bad news, but here’s the thing. It’s not bad.
Getting to know the new you is like finding a friend late in life that you wish you had forever. Someone that is filled with acceptance and, in time, peace. But, introducing the new you to the outside world takes time. Others might expect you to be the person you were, but the only way you’ve moved since hearing the word “you have breast cancer” is forward.
You do (the new) you. And don’t look back.
I finally learned to say no.
My “give a crap” bucket emptied pretty quickly during my breast cancer treatment. I was tired, worn out, depressed and just overwhelmed getting through each day. I didn’t realize it, but I was. And during that time, people came out of the woodwork to show how much they cared about me. Like all the time, every day. Sometimes it was too much. The last thing I wanted was someone stopping by unannounced when I was on the couch feeling like crap. As well-meaning as their visit was, I didn’t always feel like putting on a smile for a visit I wasn’t really up for with a person I didn’t really know all that well.
Enter guilt here. Having people that care about you is a gift really, so learning how to protect your personal space can feel selfish and mean.
It took me a long time to time realize that I didn’t have to answer the door just because someone knocked. And I didn’t have to pickup the phone because someone called. And that if I didn’t return a phone call within 24 hours it wasn’t a crime. Oh, and PS. sending thank you’s for kind gestures you receive during breast cancer is not a requirement.
Ahhh…breathe in, breathe out. Creating space for myself was hard work. But I started to learn that I could do it in a way that didn't hurt other people’s feelings. In fact, they don’t even have to know I was doing it. I had to start really being honest with myself about what it meant to keep myself going each day and I had to make a plan to stick to that as best I could. People weren’t used to me being like that so it was a gradual process for me to become comfortable with this type of mindset and for other people to respect it.
I had to start reminding myself that there will always be things I wish I had time to do…or here’s my favorite…things I felt like I should do for one reason or another. And sure, sometimes there really are things you should do just because, well, it’s just the right thing to do. But in reality there are only 24 hours in a day. And once I understood that if I left today feeling drained, tomorrow would likely be no better, my life became much more centered.
I continued to work during treatment and I was really happy I was able to do that. It made me feel normal. But, once my “give a crap” bucket was empty, the “overwhelmed me” came raging out…in a not so graceful way. When asked, last minute, to hop on a coast-to-coast flight the next day for a two hour meeting I just said “no”. I didn’t give a reason, I just said I would call in to the meeting. And I stopped caring what the consequence would be.
Now, I do realize that’s a bit rogue and not all people care to be, or can be, such a renegade. But for me, it was the first time I started to really stay true to what I cared about and what I needed in terms of personal space in my life. I understood that it might mean the job and I would have to divorce citing irreconcilable differences but I was ok with that. And this mentality started to transcend into other parts of my life.
After I learned how to say “no,” what happened was really empowering. In most cases, simply speaking up for what I wanted resulted in people being just fine with my request. All I had to do was ask. And realizing that saying no, especially in personal situations, doesn’t always require a reason to justify why. You can just say no. Period. You can’t please everyone, but you especially can’t do it if you’re always sacrificing what you need in an attempt to satisfy others. Going through breast cancer helped me give myself permission to put myself first and realize that doing so wasn’t selfish, but rather self-care.
And then, by practicing self-care, I met this really cool person. It was me, but a more chill more centered version of me. (Ok maybe “chill” is not the right word, let’s go with rationale.)
Before breast cancer, I never met a goal I didn’t want to achieve. Wait, I never met a goal I didn’t achieve. If I set my mind to something, even a tsunami wouldn’t stop me. But then I got breast cancer and eventually the bottom fell out and I had to learn to loosen my grip on life up a bit.
I started rethinking the rules of life that I had made for myself. Rules that made me feel like eating a cheeseburger would cause the tilt of the earth to be disrupted and that missing a day of running would turn me into an obese soda-loving mess of a person.
And much to my shock, chilling out about my diet didn’t result in a cosmic disaster and running less actually had no impact on my weight or interest in drinking soda. Who knew that letting go might just be what the doctor ordered. Turns out, relaxing about all uncovered a better version of me - a less obsessive and more balanced one.
In some ways, coming out of breast cancer it’s like getting to know yourself all over again. The changes that come about from living through something like breast cancer differ in everyone, but the end result can be remarkable if you carve out time for yourself and let the “new you” emerge.
Maggie finally learned that she didn’t need a lot of friends, only a few good ones.
Soon after her story started to gain national exposure, Maggie realized that some of her “friends” were just piggy-backing on her to get social media attention and access to her connections. Remember, Maggie was 23 when diagnosed so her friendship circle was all about social media and weeding out who was truly her friend and who was in it for the change to “go viral” took some time. Now, Maggie has a keen sense of who her true friends are and realizes that she has lost a few friends throughout her transformation. And she’s ok with that.
For Maggie, part of practicing self-care and getting to know the “new” her meant coming to terms with death and then putting that out of her mind. She realized that death was something that she couldn’t focus on AND still live her life. So, to let go of it, she got herself a secret notebook that even her parents don’t know about. And in it she writes things about how she wants things to be if that day comes. She realizes that to some this might seem very sad but to her it has allowed her to face her reality and move forward without it ruling all of her days.
With this strength came a sense of calm and control. And an ability to enjoy today without the consuming worry of tomorrow.
Dana finally learned how to keep the unwanted “noise” of life from coming in.
One of the best pieces of advice Dana received during her journey was from another woman who had just going through breast cancer a year earlier. She said, “Now is the time in your life when you make decisions about who and what is in your life and what isn’t. And you do it unapologetically.” The woman explained that, after completing all of her treatment, she had written a letter to her family members explaining how she was going to start creating more boundaries in her life and sent the letter to all of them.
Dana decided to do the same thing because she was overwhelmed with the responsibility of keeping her family up to date with her treatment since none of them lived close by. She wrote an email explaining that she was struggling to keep up . And in the email she made one simple mention about something she needed that would be really helpful. Scarves for her head.
And with that prompt the people that were struggling to know how to help her finally had something they could do. Soon, she began receiving beautiful scarves in the mail. Like every day. Not just from family members but from neighbors of family members or others who had been told about Dana’s story. Dana had succeeded in creating some much needed boundaries for herself and landed herself some pretty awesome scarves. Win. Win.
Dana describes the new version of herself as a person who’s earned a grandmother’s colors without ever becoming a grandmother. For her, experiencing things at a young age that many women generations older might never experience has helped her reach a point where she makes decisions every day to make sure she’s spending time doing things that bring her joy.
Living her days deliberately has created space to not sweat the petty things and to live more fully in the moment.
Holly finally learned that it was ok to just be ok.
A self-proclaimed perfectionist, Holly has finally embraced the idea that she doesn’t need to be the perfect mom and that the birthday party she’s planning for her daughters doesn’t have to be over the top. This hasn’t been easy to embrace because she lives in an area where others place a high priority on these types of things.
By learning to just be “ok”, Holly has been able to “take it down a couple of notches” and has relaxed a bit about the unnecessary expectations she used to place on herself.
Janette finally learned not to sweat the crumbs on the floor.
Yeah, crumbs and all of that other stupid stuff that used to drive her crazy. Janette has learned how to better put things into perspective. Going through breast cancer, coupled with her husband being let go from two jobs during the same period of time was hard, but she decided to focus her time on how to be a good role model for her kids. How to show them that even in hard times you can appreciate all of the positives in your life.
She looks back at her intense days in the corporate world and thinks about how pointless it was. Breast cancer helped her clarify that she wants to live a life with purpose and that using her gifts to make the world a better place is how she wants to spend her days.
For Janette, the new her just knows that giving back is what she needs to do. With hind sight being 20/20, it’s so clear to her that much of her life before breast cancer was focused on things that no longer carry importance for her and stressors that really didn’t need to be stressors.
Choosing a path of service instead of stress has brought gifts far greater than any material thing ever could.
Tyrisha’s Story (IN PROGRESS)
Tyrisha finally learned that if it doesn’t concern her, then she’s not going to let it bother her.
As Tyrisha puts it, “The new me doesn’t want to kill someone who parked their car over the line.” If it doesn’t concern her, she has learned to just let it go. And, hey, that’s pretty good news for the jerk who’s a crappy parker. He (yes he) can thank Tyrisha’s breast cancer for that. She laughs at herself for letting herself get so stressed out about little things and now just focuses on blocking that negativity.
Even after being re-diagnosed with metastatic disease, Tyrisha follows her personal motto: “If this is what I have to deal with, then this is what I have to deal with.” Wise words, my friend.
Big Lessons from Little Lumps
LEIGH TO REWRITE THESE WITH NEW FOCUS
You do you.
People have opinions about everything. And when you’re going through something like breast cancer you’ll hear all kinds of opinions. Opinions about doctors, treatment options, second opinions, and more. It’s kind of like parenting if you can relate to that. At some point you have to learn how to not let it penetrate your brain, and just do you. You’re the only one that knows what’s best for you. You heard it from your parents when you were 16 and I’m here remind you of it again.
Find a bestie.
You don’t need a thousand besties, but you do need at least one. A person that will love you through it no matter what. Someone who can take a beating (within reason) and still forget about it when it’s over. Someone who will honor your new boundaries and be supportive as you create space for yourself.
Take comfort in shared experience.
Listen. I know support groups aren’t for everyone, but there is something so cathartic and humbling about being around others who can relate to what you’re going through. I didn’t expect to be a support group kind of gal, but a couple of weeks after my diagnosis I just felt like I needed to talk to someone who had actually had breast cancer. So I went to a meeting and it as exactly what I needed. It was a dose of reality mixed with a load of feel good. And the best part is that I met another young woman named Peyton who was three years out from her diagnosis. She was funny, she had hair, and she was alive! (PS - in 2019, Peyton will celebrate her 18th anniversary from her breast cancer diagnosis. She’s still funny, still has hair, and is still very much alive!)
NOTES FROM TESSA: HOW can you help the reader find their “new them” and how can you help them get rid of the “old them?” Get rid of any clothes that made them remember treatment (maybe the outfit they were wearing when they found out the news) or get a new haircut, what would you tell them? Date themselves, journal, start new hobbies, be open to new friends? Don’t feel bad about flaking out on plans with friends to put your feet up at home? You’ve got lots you can share here.
Chapter Nine: Managing Dating & Marriage
When you’re diagnosed with breast cancer, the world might feel like it stops. But it doesn’t.
There are still relationships in your life that need attended to, or perhaps just the desire to find a relationship to have in your life.
If you’re married when diagnosed, navigating your marriage through the journey is something that can’t be ignored. And if you’re single when diagnosed, you’re either dating or maybe hoping to be dating. Which is not the simplest thing to navigate while in treatment.
Some marriages end, some relationships never get to explore where they might have gone, and others just get stronger.
But regardless, breast cancer derails life for some period of time, and that includes dating and marriage.
When I was diagnosed I had not yet gotten married, but was dating.
If you think dating in general is tough, try dating after getting breast cancer. Or during breast cancer treatment for that matter. I mean, before breast cancer it was hard enough to find a guy that wanted to date me for more than a few months but suddenly, after finding out I had breast cancer, they were all so kindly worried about me dying on them.
Death is a scary topic and it’s certainly not a turn on. That’s for sure. Neither is the idea of getting funky with a girl whose boobs may or may not be there. Not hot. I mean, I totally realize that when you’re with the right guy none of that matters. But I hadn’t found the “right” guy yet so…
Yeah, my dating life went something like this. “Hi my name is Leigh and I had breast cancer. You’re probably wondering if I can have kids, whether I have boobs, and if I’m going to die sometime soon.” Yeah, I tried to keep it nice and light right off the bat.
No one ever really noticed my boobs before, but after getting breast cancer there was an epidemic of guys’ eyes wandering south. It was like they just couldn’t help themselves. The urge to know if they were still there was a pull too strong to deny.
So, often I would say something just to break the ice. “Yes, I still have my boobs, and yes they look pretty normal.” Not exactly how my dating life went before breast cancer.
The thing is, of course, breast cancer effects more than just your boobs. When you’re going through treatment there’s all kinds of changes to your body that really aren’t that fun. Losing your hair to start. In some ways it can make you feel like a little boy when it comes to body image. Then there are the sores in your mouth toward the end of chemo and the constipation that can happen. And if you’re trying to preserve ovarian function you might even get to give yourself monthly shots in the rear. Not to mention whatever scars are healing from surgery and the loss of sensation that comes along with that. Good times.
It’s kinda hard to be “present” when dating because there’s a whole lot of noise in your head.
I had just met someone a few weeks before getting diagnosed and things were going really well. We weren’t officially boyfriend/girlfriend, but it was in the phase where you still get butterflies and can’t wait until the next time you get to see them. Then I got the news. Well, that took the wind right out of things. We continued to see each other on and off throughout my treatment but it always felt like it was a relationship on pause because of the situation. It was really weird to be dating during a time in my life that was so intense. I shared so many things and experiences that were so personal with someone who, in fairness, I was just getting to know. I didn’t expect the relationship to immediately become serious because of what we had shared, but being with someone when you’re at your rawest definitely puts it in a different category than other casual dating scenarios.
We eventually parted ways, almost exactly at the time when my treatments was finished, and I didn’t deal very well with it. Most likely because I was already entering my deep depression around the same time, about things much more serious than the breakup. There was no way I could be the best version of myself for anyone at that time and I knew it. But I was still sad.
I did go on to have other relationships after breast cancer, while it was always a topic of conversation, didn’t feel as central of a topic as I thought it would. I even went on to get married when I was 30. Yup, to a guy I remember having a crush on when I was little. He was nothing like the guys I had dated before, but my heart was open. He was a “live for today” kind of guy, not an overthinker, funny and just loved me for who I was. “Scars” and all (pun intended). And that’s exactly what I needed at that time. It just worked. Well until it didn’t, but that’s another story.
We have gone on to maintain a really special friendship even though the marriage didn’t work. As Gwyneth Paltrow would say, we’ve “consciously uncoupled.” What does that even mean anyway?
When Maggie was diagnosed, she had a boyfriend.
They had been dating for about six months and the relationship was exclusive. They both lived in NYC. When Maggie found out she had breast cancer, he was traveling in Europe so she had to tell him by text. His first response was that he would be there for her no matter what. She told him that she understood if it was too much to handle but he assured her it wasn’t. But as the months passed and her treatment started, it turned out it was too much. Little by little he was less and less available and it became obvious to Maggie that he couldn’t handle things so she ended it.
In some ways Maggie understands because what she’s going through is a lot for anyone to handle. But she also knows when the right guy comes her way all of those things won’t matter. And she’s willing to wait for that person.
When Dana was diagnosed, it was a couple of months before her wedding.
Dana and Paul met in Vegas and what happened in Vegas didn’t stay in Vegas! They dated for two years before getting engaged in Steamboat Springs, CO and got busy planning their wedding - to be held in Vegas, of course. Like most young couples their life was just simple and fun. They hung out with friends, threw football parties in their garage, took weekend getaways and just enjoyed planning for their future. Their life was carefree and they were in love. But then cancer happened. And it changed everything, including their wedding date.
The year leading up to their rescheduled wedding was filled with doctor's appointments and treatment schedules. Everything centered around cancer. Dana was the patient and Paul was the supportive guy on the outside looking in. But even after the year of treatment was over and they celebrated their wedding day, cancer was still central in their relationship. There continued to be big decisions and other issues related to her cancer that took over for many years to follow. Issues with meds, depression and other long term considerations to ensure Dana’s continued good health because her cancer was aggressive.
For Dana and Paul, they never experienced that newly wed bliss that you hear about. They became that old married couple without living through the years that allow you to earn that status. In the first years of their marriage, they faced more than most couples couple experience in a lifetime. And it took its toll. Eventually, in 2017, they decided to separate for a year. As Dana recalls, they just needed to “break the intensity” because so much of who they had been as a couple had gotten lost in cancer. Cancer was the center of everything and they had to learn how to rebuild their relationship as a couple. A couple that wasn't all about cancer. Because for so long they were forced to focus on everything else but them.
Dana and Paul got through it but continue to work on how to just be a couple. It’s been a hard road, but they are committed to making things work. They have moved back in together, and together they are figuring out how to focus less on cancer and more on why they fell in love in the first place.
When Holly was diagnosed, she had been married for 13 years.
Holly and John met in Mexico while on spring break in 1992. She and her girlfriend walking across the beach when Holly noticed a blonde guy with wavy beach hair. He looked like a surfer and was wearing funky vintage green striped shirt and jean shorts. As they passed him, John casually said, "A redhead!” and Holly’s heart skipped a beat. After settling in on the beach, thirty minutes later John showed up at Holly’s towel and sat next to her. Two weeks later they moved in together and the rest is history.
Throughout Holly’s treatment John was her hero. He stepped up to take on everything Holly couldn’t keep up with around the house and was a wonderful father with her daughters. And even though it was hard for Holly to give up her role as care taker, she knew she had married a man that would step up and be a rock through it all. As Holly says, “John is my true love!”
But even with a rock solid marriage, the cancer brought about challenges. Not just for them as a couple, but for their entire family. They had to take time to heal as a unit to heal. And coming out of that time, not only is their marriage stronger so is their family bond.
When Janette was diagnosed, she had been married for 16 years.
Janette and Jay met at work right after college. She remembers seeing him in the elevator one day with a group of “new hires.” He was an impeccable dresser and caught her eye right away. Janette figured he was out of her league but threw out some hints here and there to try to get him to meet up with she and her friends a few times. But no dice. Then, finally, Jay invited her to a Kansas City Royals game and the rest is history. They dated a little less than a year before getting engaged and got married later that year on 10/10/92. (Remember that date because there’s a cool story about it later on!)
Janette shared that she hasn’t seen Jay cry many times in their marriage, except for when she told him she had breast cancer. In the back of her mind, she was a little afraid that the loss of her breasts, or her hair, might make her less attractive to him, even though he has always told her she is “beautiful no matter what.” She knew this was actually true on Thanksgiving 2008, when her hair started to come back gray after her chemo. At the dinner table, they all went around to say what they were thankful for. And when it got to Janette said she was thankful for “swiffer dusters” (I mean who isn’t right?!?!) But then Jay simply said, “I’m thankful that my favorite color is gray.” It brought tears to Janette’s eyes and she will never forget that.
Janette and Jay navigated the journey as a true couple and with a ton of grace. And if I’m honest, right now I’m just wondering if there are any other Jay’s in the world that are still single!
Tyrisha’s Story (IN PROGRESS)
When Tyrisha was initially diagnosed she had been married for 4 years, but had been separated for a year.
Tyrisha met Fareed when she was 14. She liked everything about him and it was classic young love. They got married 8 years later when she was 22. They already had a 3 year daughter together and she was excited about their future together. Then, at age 25, they welcomed a son. Just months before her diagnosis. Then, after 7 years of being cancer-free, they welcomed another son when Tyrisha was 33. Throughout her treatment, Fareed was around but not truly present. He didn’t deal well with the emotional side of supporting Tyrisha and it was taking its toll.
She and her husband eventually separated after 3 years of marriage and divorced a year later. She was 31 and it was 5 years after she battled breast cancer. And now, she was embarking on on raising her daughter (12) and son (6) alone. Well, she didn’t really have a choice about that part because Fareed had been incarcerated a year prior and she decided to file for divorce. She had already known for some time that it wasn’t working. From her perspective he had always been a good father, but not such a good husband. And she needed more.
NEED TO FIND A WAY TO ADD YOUNGEST SON HERE.
Then at 9 years after her initial diagnosis, Tyrisha found out her cancer had spread., Tyrisha welcomed another son. 7 years after her first diagnosis.7 years at this time. With time, she has gained empathy for him and still loves and misses him.
Tyrisha’s road has been hard but you’d never know it to talk to her. She believes Fareed’s time in prison has forced him to understand life in a way he didn’t before. In a way that might allow him to be a better husband and is hopeful that once he is released from prison they can work on becoming a family again.
Big Lessons from Little Lumps
Getting into a dating state of mind while going through breast cancer is hard. You want to be normal and get back into the game, but in reality there’s a lot of stuff fighting against you. Both physically and mentally. And it’s stuff that normal guys just can’t relate to. I mean, who can blame them (well, we can because it’s fun to), but in reality it’s hard for anyone to relate to really.
And if you do date during your breast cancer treatment, it’s a time in your life where you’re stripped of so much. You’re sharing a very personal time in your life with someone else that isn’t your spouse and someone you may or may not be with in the long run. So if it ends, the loss can feel disappointing in a way you didn’t expect. Because when it ends, the shared experience you had with that person is something no one else in your life will ever understand.
If you’re married, it’s hard to not let the cancer topic take over. It’s so consuming that it can become the central thing in the relationship with little time or energy to attend to the relationship itself. It can also exaggerate weaknesses in a relationship that were already there, but now become so noticeable they can’t be denied. But as with anything, things pass. And with time, both dating and attending to a marriage can become more in focus as cancer gradually fades into the background.
Here are some tidbits about dating, marriage and breast cancer:
Be present with “what is.”
Let go of all of the artificial rules you’ve given yourself about dating and marriage and let yourself be present in “what is”. Open your mind to new ways that relationships can work instead of viewing them only threw the sense you’ve always used. You might just be surprised that someone you never expected to find interesting suddenly seems kinda hot. Or that your spouse really can pick up the pieces. Or maybe some rigid ritual you struggle to keep up with in your relationship isn’t something you really care about, but you do because that’s “what you do when you’re married.” Give it a try. What do you have to lose?
Sometimes it’s best to let things crumble.
If it’s broken now, it’s likely been broken for longer than you’d like to admit. Breast cancer just provides the magnifying glass that makes it impossible to ignore. Relationships that were already cracked can break, and family relationships that were already strained or non-existent become more painfully obvious than when life is business as usual. While allowing the house of cards to crumble may be the best thing, having it happen during breast cancer treatment is certainly not ideal. Sometimes just letting things be the way they are without actively trying to figure them out, fix them, or change them provides peace in ways you might not expect. It sounds cliche, but when faced with death, your days become precious, and toxic relationships become intolerable and healthy relationships critical. You have a choice about how you spend your days, so choose wisely.
“Hope” isn’t a four letter word.
For some reason, the word “hope” used in the context of breast cancer kinda bugs me. I understand why it’s commonly used as word of encouragement for the one needing a boost of, well, just about anything. Maybe it’s just me (probably is), but since I’ve learned to unapologetically just “do me”, there you go. Anyway, when I listened to the stories of how all of these women, including myself, have navigated their relationships during breast cancer, these words took on a new meaning for me. These women, despite the acute focus on their disease, maintained a sense of hope. Not just for getting through breast cancer, but hope around what was next with their current relationships or future ones. For Maggie, it meant recognizing when her situation was too much for her boyfriend and being brave enough to move one, knowing that the right person would accept her no matter what. For Dana, it meant taking a break in hopes of getting to a better place. For Holly, it meant hope that a family unit could navigate depression together, as a unit. For Janette, it meant realizing that her relationship with her husband was, in fact, as strong as she had hoped it was. And for Tyrisha, it meant hope that years of time without Fareed might just be what was needed to make future years of happiness as a family possible. And with that, I have made friends again with the word “hope”. Got hope?
Chapter Ten: Having Babies
Most women either know they want children or they don’t.
But, if you’re young when diagnosed with breast cancer this issue can be forced at a time when you’re not quite ready to make that final decision. Or, the decision might just be made for you depending on your diagnosis and treatment outcomes. Babies and breast cancer is complicated matter. And it looks different for everyone, depending on what life stage you’re in.
If you have children when you’re diagnosed, taking care of them and seeing them grow up is most likely something you just can’t stop thinking about.
If you don’t have children when diagnosed, you may be faced with the possibility or even the reality that you never will.
I didn’t have any children when I was diagnosed, but was pretty sure I wanted them.
I think I came to terms with the real possibility of not having children, for the first time, after I was diagnosed with breast cancer. At the time the life/death thing was obviously the main focus, but the looming possibility of become infertile certainly was an added "bonus" that was one of the many sub-issues that came along with the package. It was a wait-and-see type thing...the exact thing I'm not so good at. Now mind you, at that time I was single and hadn't even decided for sure I wanted a child, but I certainly wasn't ready for someone else to tell me it wasn't possible. That was a decision I wanted to make for myself. So as the waiting process started, I mentally began preparing myself for whatever the outcome might be.
Three months after my chemo ended, my cycle returned and low and behold I was fertile afterall! Phew! But then there was 5 years of the "post-treatment" treatment (Tamoxifen), during which time pregnancy is possible but not suggested. So looking ahead, I knew that would put me at age 39 when I could start doing the heavy duty kissing my mom told me makes babies (wink, wink). And as much as I didn't want to admit it, that bio clock thing is real and those nice ripe eggs weren’t stayin' ripe for much longer.
But then after getting married, and finishing up my 5 years of Tamoxifen it happened. And suddenly there I was...newly 40, and newly pregnant. A place I was hoping I'd be, but yet a place I was prepared to never be. It came with a load of odd anxious emotions I wasn’t expecting and I continually tried to sort through them all in order to uncover my undeniable excitement. Of course, this process would have been easier on Lexapro with a glass of wine (or twelve) in hand, but alas it just me, my husband, my overactive brain, and the kidney bean in my belly.
I was surprised that I wasn’t just 100% thrilled. After all I had waited a long time for this. But in reality I was struggling to embrace the fact that I was pregnant while also feeling worried about letting go of the lifestyle it had taken me 40 years to create. When I was younger, I always assumed I would have children, but as I got older, I started to become more comfortable with the realization that perhaps that just wasn’t part of the plan. Having children was something I always thought about in the future tense. It wasn't something I thought about with any sense of urgency. Even after getting married.
As the days passed I noticed that the days leading up to my checkups were plagued with quite a bit of anxiety and void of much unbridled excitement. I wasn’t shocked by this but maybe just a bit disappointed that my age and breast cancer experience had chipped away at that naive invincible feeling that 20 something moms-to-be probably experience full boar.
Unbridled excitement left my vocabulary on the day I was diagnosed. I can remember how it felt in the exact moment that it exited my body. My face became hot and my knee bounced uncontrollably as I hung up the phone and realized, in that moment, my life had changed forever. From that point on a lead balloon loomed above me at every doctor's appointment, no matter what it was for. It was then that my love hate relationship with doctors, general uncertainty, national health statistics, and screening tests began.
Even though breast cancer was getting further and further in the rear view mirror and the birth of a baby was coming more into focus, the lead balloon was still there. I couldn’t shake it no matter how hard I tried. It was like I was the only one that knew it was there, but I had no control over whether it popped, crashed, or flew forever. It was just there.
So at one of my early ultrasounds, when the doctor proclaimed me "officially pregnant" and confirmed that the pregnancy looked very stable with a low chance of anything going wrong I knew I should feel relieved. After all, by “low chance” he meant that I had only a 1-5% chance of miscarriage going forward. But here’s the thing, my chances for getting breast cancer at age 33 were less than 5%, but it happened. Somehow I squeaked in there to be one of those stats. Hence my love/hate relationship with them.
But, on that day, for one fleeting moment the lead balloon disappeared and I allowed myself to breathe a sigh of relief and experience pure joy. I decided to love the doctor, appreciate the uncertainty of what was to come, embrace the stats, be thankful for the screening ultrasound that gave me peace of mind, and began believing that my lead balloon will fly for a very long time to come.
And at the age of 40, I gave birth to my first son, Eli. And 18 months later, age the age of 42, my second son Leo joined our family. And there I was, cancer-free and a mom to two healthy baby boys. How’s that for beating the odds? So there lead balloon.
When Maggie was diagnosed, she already knew she didn’t want to have children.
And much like the discussion she had with her doctor about not wanting to have reconstruction after her mastectomies, her doctor continued to encourage her to consider freezing her eggs. But Maggie was sure. Even though she was only 23, she just knew. She also knew that if she ever changed her mind, there was another option. Two years before Maggie’s diagnosis, her sister had harvested and sold her eggs to pay for graduate school and there were still some unused ones in “storage.” So if Maggie ever did decide to have kids, her sister told her she could have one of her eggs and even offered to carry the baby for her.
When Dana was diagnosed, decisions around having children were still open, but she knew most likely she didn’t want to have them.
Dana’s treatment was long, and brutal. And whether or not she would maintain her fertility coming out of treatment was an unknown. And even if she did, there was a chance that getting pregnant would not be recommended because of the make-up of her tumor. Having children wasn’t a central focus in Dana’s decision making around treatment, but in the back of her mind she also knew she was young, about to be married and considered the possibility that her feelings on the topic might change over time.
Today, Dana is still feels settled about not having children. Turns out her feelings about having a family didn’t change over time. As Dana says, she has had to grieve so many things through her journey with breast cancer and she’s just grateful that, for her, not having children wasn’t one more loss to grieve.
When Holly was diagnosed, her daughters were 9 and 10 years old.
Holly recalls standing in front of a huge picture wall in her home after receiving the news. The wall was covered with about 300 pictures of her daughters and family members. She jokes that the perfectionist in her made sure there were an equal number of photos of each daughter (smart momma!) As she looked at the pictures all she could think about was the possibility of not being around to teach her daughters all the lessons she wanted to teach them. So when her daughter, who was 10 at the time of her diagnosis, tried on her first prom dress Holly just broke down. Her daughter asked her why she was crying and Holly said, “Because I’m just happy to here.”
Today, simply attending her daughter’s events is something Holly is grateful for because just being able to experience those moments with them are the small things she was worried she’d never get to do.
When Janette was diagnosed, her daughters were 6, 10 and 12 years old.
Before breast cancer, Janette admits she was really laxed about chores. She liked taking care of her kids and didn't mind all of the life tasks that came along with it. After all, she was a stay at home mom and this is what she signed up for. But during breast cancer, she needed help. She had a hard time keeping up with it all and had to lean on her children and help them become more self-sufficient. She had to lean on friends to help take her kids for an overnight when she needed time to just rest. And most of all, she had to learn how not to feel guilty about her temporarily revised role as a mom.
Janette really feels like having to let go of some of her “mom chores” has helped her children become more responsible and also taught them that it’s ok to ask for help when you need it.
Tyrisha’s Story (IN PROGRESS)
When Tyrisha was initially diagnosed, her daughter was 6 and her son was 3 months old.
And as if that wasn’t hard enough, 9 years later, when Tyrisha was diagnosed with metastatic disease, her daughter was 16, her son was 9, and her youngest son was 2.
Even with all that she has faced her main focus is making sure her kids have a good role model to help them navigate life. She works full time and cares for her family, all while her ex-husband continues to be incarcerated. And she never complains.
Quite simply, Tyrisha is superwoman. She is full of grace and is as strong as they come. To her, she has the family that she always had hoped she would have, and the gift of being a mom overshadows any hardship that comes her way.
Big Lessons from Little Lumps
Whether you're a mom or wondering if you want to or ever will be one, babies and breast cancer is likely a major topic during this time. As with most things, you can only process so many things at once and you can only expect so much from yourself when you’re brain is focused on life or death. Find ways to practice compassion with yourself. You’ve mastered this with other relationships in your life, no doubt, and now is the time to turn that skill inward. Let yourself be less than what you expect, let yourself be sad about pondering life without children, and let yourself lean on the spirit and help of others.
Put “super mom” on vacation.
Ok women are pretty awesome. We specialize in multi-tasking and basically operate with eight arms on a daily basis, whether you’re a mom or not. But now’s not the time you can prove that you truly are a “super mom”, now’s the time to put her on vacation. It really is ok if those not-so-dirty-jeans are worn for a second day in a row. And it’s ok to feed your kids microwavable mac and cheese. They will survive. What they need from you right now is love, not a “super mom.” You might even realize that no one really cares about those three course meals you slave over every Sunday night and that ordering in pizza allows for a lot more time to talk. You’re already a super hero, so hit cruise control for a while and check any guilt at the door.
You can’t parent breast cancer AND kids.
Going through breast cancer is kinda like being a parent. You can’t stop thinking about the what-if’s, you stay up late at night reading about how to make the best decisions, you literally have zero brain space for yourself, and you're always exhausted both mentally and physically. You can’t do that AND parent your kids that way you did before. Something’s gotta give and nothing lasts forever. So go ahead and just parent breast cancer for awhile. Believe me, monitoring screen time will be there for you when this is all behind you.
Soak in the joy of a wee one.
There’s no better medicine than the innocent smile of a child who doesn’t even notice you’re bald. I didn’t have kids when I was going through treatment but I had the sweetest little neighbor boy named Corbin. You know, the kind of sweet boy that comes in your house without knocking and helps himself to something in your fridge. The kind of sweet boy that his mother always worries he’s bugging you but he’s not. He was probably 6 years old when I was going through treatment. His teeth were almost too large to fit in his mouth and his big eyes were like the were bright and happy. He was the sweetest. During treatment I’d play frisbee with him in the backyard. He never noticed that I didn’t have hair. He didn’t care. He just liked being around me and it was the simplest kind of medicine that brought joy to me during those days. If you don’t have kids when you’re going through treatment, find yourself a Corbin because it might just be the dose of sunshine that you need.
Chapter Eleven: Meeting Milestones
ADD INTRO NOTES FROM TESSA
Milestones is a big word, but milestones can be small. I’d like to see you first talk about all the milestones they had to go to get here (since the chapter you mostly talk about post treatment milestones) Give them reason to celebrate whatever stage they are in of the journey.My Story
My most scary breast cancer milestone was my 10th anniversary from diagnosis. It was 2014.
As soon as you get out of your treatment, you start to plan ahead for key milestones in the future that will help remind you that you will be ok. The big ones are 3 years, 5 years, and 10 years. With each milestone the risk of recurrence gets lower, but it never goes away. Breast cancer can always come back.
So while celebrating each milestone is much anticipated, at least it was for me, it also brings about a rush of emotions and worry about the cancer returning. It’s kind of like just when you let your guard down, you feel like the other shoe is going to drop.
At my 5 year mark, I was completing Tamoxifen and my then-husband and I were planning to start trying to have kids. I was 39 so, fingers crossed, my body could still produce small humans. I was told that cancer wasn’t a concern, just my age.
But before any baby making was allowed, the doctors wanted me to get a clean bill of health. I had to go through a set of scans like I did when I first got diagnosed. Scans really suck. Like bad. The sounds, the claustrophobic feeling, the prep. The idea that someone is looking through your body in the other room and might be sitting there thinking…oh man, she’s a goner.
In the weeks leading up to these scans I started freaking out. The thought of going into those machines and all of the things that follow just about gave me an anxiety attack. I told my doctor and they suggested taking Ativan the day of the scans. Hey, you don’t have to tell me twice. When I was picking up the prescription, the young pharmacy tech took my name and went to get my medication. She came back to the counter and asked (not so quietly) if I was headed on a long plane trip or something (thinking I needed something to calm my nerves for the flight).
I simply said, “No, I’m having scans for cancer.” Yeah, that ended that conversation pretty quickly. She doesn’t ask me about my meds anymore. Hmm, wonder why?
And, lucky for me, things turned out to be all clean with my scans. And within the year I did get pregnant.
Before long, in the midst of the toddler years with my boys, my 10 year anniversary came along. I had just been asked to do a keynote speech at a women’s conference for nearly 500 women and I was preparing for this awesome opportunity. I scheduled my mammogram and later realized it was going to be the day before my speech. I thought about it for a little and decided I needed to reschedule it. Finding out my cancer had returned the day before this big speech would have been really inconvenient. So I decided rather than be chock full of stress that I'd just move it.
I remember the lead up to my 10th anniversary was the hardest. Everything about it stressed me out. I think it was probably because I now had two toddlers and was a single mom. Therefore a lot more was at stake than with past anniversaries. Thinking about the aftermath of a recurrence scared the shit out of me.
But alas, I delivered my keynote, received an standing ovation, my mammogram day came and went and I received a clean bill of health.
Yass! So I went to buy myself some Oliver Peoples sunglasses.
Now that my 15 anniversary has arrived, I figured hey why don’t you just go write a book or something. Pour your anxiety into something that will be here forever, even if you’re not. I’m kinda kidding kinda not. And what did I decide to buy myself? Well, laser hair removal, of course, to clean up my bikini line and get rid of these pesky chin hairs. Ironic right?!? Given that a large part of this book is about losing your hair. Apparently your hair does grow back, even where you don't want it!
ADD THIS SOMEWHERE TO THE CONTENT ABOVE
I met Rachel in March of last year. She was cancer-free at the time but only weeks away from finding out that her cancer had returned and spread to her liver, lungs, bones and soft tissue. I learned this on the day I was “celebrating” my 3 year anniversary from being diagnosed and it shook me to the core. For her, it was less than 2 years from her original diagnosis, and only months after getting married to the man of her dreams. A young woman in her 30s very much looking forward to moving beyond breast cancer, but halted by this unwelcome news.
I felt an immediate bond with Rachel when we met. We were both very driven women and very much in love with the men we had waited nearly 35 years to find. We both were diagnosed in our 30s with no family history of the disease and shared a burning desire to make a difference in the breast cancer community, but in a way that reflected our own creativity and experience with the disease.
Since 2014, Maggie has celebrated each milestone by thanking those that keep her alive.
Since Maggie was diagnosed with Stage 4 from the beginning, her anniversaries have a different meaning than they do to most other survivors who can celebrate another year of being cancer-free. For Maggie, each year marks another year she is thankful for being alive. The harsh reality of her diagnosis is that only 26% of people actually make it to the 5 year mark. Maggie uses her first day of chemo to mark her anniversary because to her it signifies the first day of treatments that could save her life. And how does she celebrate? Well, no shock to me given her remarkable spirit, Maggie sends flowers to all of her doctors and nurses to thank them for caring for her.
Maggie’s 5 year anniversary is in June 2019 and she plans to take a trip with her mother to mark this truly incredible milestone.
Dana’s most memorable milestone was her 5th anniversary. It was in 2015.
And for Dana, her cancer anniversary is always her birthday too. For people with Dana’s diagnosis (ER+, HER2+), the 5 year mark is especially important because of the aggressiveness of the cancer. Shortly after her anniversary she traveled back to Ohio to visit her family and her mother asked her how it felt to hit that milestone. Dana replied, “I never thought I’d make it.” And her mother’s reaction surprised her. She broke down, because until that moment her mother never realized that Dana had been carrying that weight around for so long. Dana always wore a brave face and for the first time she admitted what, before now, she had never shared.
Now that her 5 year anniversary has passed, Dana feels at peace with her mortality. Because she has immersed herself in the world of breast cancer through the work she does, she has experienced more loss than most people do. This has helped her to focus less on the future and more on making every day she's here the best it can be.
Holly is all about every milestone.
I mean, no need to limit the ones you celebrate right?!? So Holly has started a tradition of buying herself a ridiculously expensive pair of boots each year around her anniversary to make sure she can keep “kicking cancer’s a**.” Yeehaw sister! That’s my kind of girl. For her, she uses the end of her treatment as her anniversary date because that day for her was a happy one (vs. the day she was diagnosed).
And while each year around the time of her mammogram she goes into a fit of anxiety, she tries to focus on those boots she’ll treat herself to after it’s all over. In 2018, Holly celebrated her 10th anniversary.
For Janette, the most memorable milestone was reaching her 10th anniversary. It was 2018.
Hitting your 10 year mark is a big milestone in the world of breast cancer, because it translates into a decreased likelihood of the cancer returning. This gave Janette a huge sigh of relief. She was so grateful to be 10 years “cancer free” (not in “remission” - Janette hates that term), and that year turned out to be pretty charmed overall as she recalls. On the same she finished her last day of Tamoxifen (she was on the 10 year plan for that) she also reached a huge goal she had had for her business. Go Janette go!
And with the number “10” already being known as “her family’s number” it seemed to be no accident that good things were coming her way. Are you ready for this? Janette was married 10/10, her husband’s birthday is 10/16, her daughter’s birthday are on 10/1, 6/10, and 1/10, and and her dog’s birthday is on 7/10!
And on the actual day of her cancer anniversary, Janette did what a “pay it forward” person like her does - she attended an opening for a local cancer boutique and donated all of her wigs, hats, and scarves to help others just starting out on their journey.
Tyrisha’s Story (IN PROGRESS)
The milestone most important to Tyrisha was her reaching 10th anniversary, but it never came. Tyrisha’s cancer returned in her lungs just one year before her 10 year mark.
Tyrisha never really celebrated any milestones after her first diagnosis because, being so young when diagnosed, she always felt embarrassed about having had breast cancer. She would even participate in breast cancer walks without anyone knowing she, herself, was a breast cancer survivor. But after her second diagnosis in 2018 (which was a metastatic diagnosis), she has a different outlook. With age she has become less ashamed of having breast cancer and has started to share her journey more openly. As in, rallying 150 family, friends, and other’s from her children’s school to join her by wearing t-shirts that said “Tyrisha’s Tatas for Hope: 2nd Round Knockout.” Talk about a fighter. Now, she uses these types of events as a way to surround herself with her support system and makes the day “all about her.”
Now that she is battling metastatic disease, Tyrisha’s biggest hope is to celebrate the day when she is told there are not active cancer traces in her body. Her first anniversary from being diagnosed Stage 4 is in July 2019.
Big Lessons from Little Lumps
So you get through treatment and you’re well aware that breast cancer can come back at anytime. Yeah, you got the kind of cancer that is never considered “cured.” Good times. But you also know there are some key milestones that indicate you’re less likely to get it back. In the beginning these milestones feel like a lifetime away and it’s hard to imagine that you’ll ever get there. Your 3-year mark, your 5-year mark, and the coveted 10-year mark.
While you’re going through treatment you’re pretty much focused on the day to day. Getting through surgery, starting and finishing chemo, getting through radiation, then maybe tackling the meds that follow all of that. There’s not a lot of brain space for thinking 5 or 10 years out.
Then you meet some people who are much further along in their journey than you are, and little by little you start to imagine what your life will be like if (god willing) you hit those milestones too. And you fantasize about what a happy day each of those will be.
So then the milestone nears and suddenly the fantasy you had about greeting the milestone with relief and joy isn’t quite the way you feel. So here’s how I look at milestones, having been through a fair amount at this point.
Keep your mammogram day to yourself.
Now this is counter to how I live my life. I’m super open, and my breast cancer journey is woven into my daily life through the work I do. But in the past few years, I have started only sharing that I had a mammogram after I get a clean one. I go to the test quietly, sit quietly, breathe deeply, and focus on the fact that an hour from now things will be fine. Then, when I get that good news, I let my heart rate settle back to normal, whisper a big “thank God” and go back to checking all the mundane stuff on Facebook.
Buy yourself something nice.
Maybe it’s a nice dinner out with a friend or your partner. Maybe it’s something sparkly, a day at the spa, or those shoes you’ve been eyeing up online. I’m giving you permission to do it…with no regrets. You deserve it. Now get shopping.
Give yourself a big “Hell Ya!”
Chances are your life has changed quite a bit since your diagnosis. Maybe you left a relationship, made a move or career change, or simplified your life in some inspiring way. I have no doubt that something about your journey has changed you and has inspired others who have watched you navigate through it. Take some time near a milestone to lift yourself out of the weeds and remember you’re pretty darn awesome. Then go on with folding your laundry (yeah some things never change even if you have…)
Chapter Twelve: Sometimes it’s NOT Cancer
NOTES FROM TESSA:
Knowing the difference between fear and intuition. That your gut response starts to become fear, and for a while you have to listen to it all. But you’ll learn to discern between normal aches and pains that just scare you and those you should head to the doctors about.
I once thought I had heel cancer.
After you have cancer, you think everything is cancer. A runny nose…cancer. Hangnail…cancer. Common cold…definitely cancer.
I remember while I was going through chemo I had a pain near my right boob (opposite boob from the sick one) and I was obsessed with it. I was convinced there was a lump hiding in there somewhere and I was determined to find it. Like every minute of every day. So one day, I finally decided to make an appointment with my oncologist to bring up this problem area. I pointed it out and pushed around at it like I had been doing. She examined, felt nothing and showed no concern. She then went on to ask me how often I poked at the area. And I admitted that it was currently my past-time. She chuckled and suggested that maybe if I let it alone for a few days I might feel better.
How’s that for sound medical advice? And the kicker? She was right! No wonder she makes the big bucks.
Recently I’ve been going through some heel pain. I’d like to say it’s from marathon training or something impressive like that. But it’s just from my basic day to day. However, it really hurts. I put off getting it checked out for months. Mostly because I just didn’t feel like making time for it. But when I finally went to the doctor she said she wanted to take x-rays of my foot to get a better look at what it was. I was suddenly overcome with anxiety. So I just said it. “Is there any way this could be cancer?” She looked at me like I was nuts. So I told her that I had breast cancer 15 years ago and I just wanted to know if I was about to find out I had heel cancer. And, if so, today wasn’t the day I felt like learning that. She assured me that it was nearly impossible. And I reminded her that I specialized being diagnosed with things that were nearly impossible.
At any rate, it wasn’t cancer but the point is, the fear that anything, and I mean anything might spiral down into another cancer diagnosis is a fear that rears its head for years to come. I don’t think there’s any way to make that go away so I’ve just accepted that I turn a little insane in those situations. And I warn any doctor I see of this benign yet chronic condition I have so they can talk me off the ledge when needed.
Maggie once thought she had wrist cancer.
It wasn’t long ago that, seemingly out of nowhere Maggie's wrist started to hurt. And her first thought was that the cancer had returned in her bones. But then the pain went away. A few weeks later, it started to hurt again and she realized it was right after she got done curling her hair. Funny enough, Maggie had recently gotten a fancy new curling iron and was busy using it to feel pretty when she realized this new favorite hair styling gadget was to blame and not cancer.
Remember, curling iron injuries are not cancer.
When Dana would wake up at night and her thigh was numb she was convinced it was cancer.
She didn’t like it. Not one bit. It was starting to happen every night. Like numb to the point where she couldn’t feel anything even if she pinched it. There were no two ways about it, Dana was certain the cancer had returned in her spine and was messing with some nerves which was causing the numbness in her leg. Now luckily, Dana’s was seeing a massage therapist at the time as part of her recovery treatment and she mentioned it to her. Very quickly the therapist said it was likely her sciatica nerve, but Dana was not hearing that. So after a few adjustments, magically Dana had feeling again in her thigh. And after a few weeks of working on her sciatica nerve, the numbness completely disappeared. Since then, Dana has enforced what she calls a “30-day rule” where she forces herself to wait at least 30 days for all ailments before she allows herself to call the doctor.
Sometimes if you just wait it out, the pain goes away and it’s not cancer.
Holly was once convinced the twitch in her eye was cancer.
To be fair, it wasn’t just an eye twitch. It was an eye twitch coupled with headaches and, in fact, she felt like her whole face was twitching. I mean who wouldn’t think that’s cancer right? Well, Holly’s doctor for one. After scheduling an appointment with her oncologist, the doctor said, “You don’t have cancer. You have acute anxiety.” Say what? Turns out that because Holly had poured herself into her breast cancer community she had, as the oncologist put it, “placed herself in the center of an intersection with a semi-truck barreling toward it.” Ok, that doesn’t sound like a place anyone would want to be and it’s certainly a good reason to feel anxious. So what was the suggested treatment plan? The oncologist said to Holly, quite simply, “You just need take yourself out of that intersection and put yourself on the sidewalk for a while.”
Lesson is, anxiety sucks and it can cause full-face twitching. But it’s not cancer.
Janette really did have a swollen lymph node once, and was convinced it was cancer.
Ok, to someone who’s had breast cancer (or any type of cancer I imagine), swollen lymph nodes are our arch enemies. We don’t rationalize them as a sign of strep throat or any other kind of common ailment. They mean one thing and one thing only…cancer. So that happened to Janette once, after thinking she felt something in her breast similar to what she remembers feeling when she found her cancer lump. It was in her reconstructed breast that had an implant and to be safe the doctor ordered an MRI. (Remember, I told you? You can land a scan from complaining about a hangnail if you push hard enough. LOL.) And low and behold, the MRI did show a swollen lymph node but alas it was nothing. Phew.
Sometimes, just sometimes, swollen lymph nodes are not cancer.
Tyrisha’s Story (IN PROGRESS)
Even after having a double mastectomy, Tyrisha’s left breast became huge after giving birth to her 3rd son and she was convinced it was breast cancer.
Ok, so after you have a mastectomy all of the breast tissue has been removed. Or at least that’s what is supposed to happen during surgery. So why in the world was Tyrisha’s reconstructed breast so huge and why was her newborn son trying to breast feed on it? It made no sense to Tyrisha so she went to have it checked out with her doctor. Turns out, even after her double mastectomy, an ultrasound determined that three milk ducts were accidentally left behind. And those ducts were responding to her newborn who was wanting to feed. Which is ironic because, if you remember, Tyrisha’s breast cancer lump was initially dismissed as a clogged milk duct. And now, that is exactly what it was.
Sometimes even when your initial lump is dismissed as a clogged milk duct but is cancer, then you have a double mastectomy and the few milk ducts that are left behind begin swelling after having a baby, those really are just milk ducts and not cancer. You follow?
Big Lessons from Little Lumps
You might find this hard to believe, but yes, it is possible that you can get a common cold after breast cancer and no it’s not cancer of your sinus cavity. You can also have bronchitis but not have lung cancer. Believe me, you will think everything is cancer for, well…awhile. Especially if you’ve found your own lump, there’s this irrational (or maybe not so irrational) feeling that you—and you alone—will be the only way a future cancer is detected.
Be careful what you wish for.
The upside to getting cancer is that doctors take you very seriously, especially in the months and years right after your diagnosis. The downside to getting cancer is, well the exact same thing. So before you go running to the doctor about that migraine (you know the ones you got before cancer), keep in mind you just might end up heading to a brain scan that day. Chances are the aches and pains that come your way after breast cancer are the same ones you had before, but your brain has a hard time believing that.
Being a “free range” human is good…really, it is.
The further away you get from your cancer diagnosis, the less medical attention you receive. In the beginning, you’re at a doctor’s appointment sometimes daily and under constant medical supervision. But little by little, they release you back out into the world. You become free range you again left only to your own defenses. It takes time to trust your body, but you will. Believe me, being a “free range” human is way better than being a human in treatment.
Embrace the “30-day” rule.
Chapter Thirteen: Say Something Big
Sometimes the smallest most insignificant actions and moments have a profound impact on the people and the world around us.
It’s not a planned thing. It’s organic, pure, and larger than any individual person’s plan.
In these moments, one person’s experience takes on universal meaning and a gap in the world around us that was previously unnoticed becomes filled.
They have “said something big!”
Starting Feel Your Boobies® is how I “said something big”.
Coming out of breast cancer, I started Feel Your Boobies® and my desire to find purpose in my work and balance in my life started to take form. Suddenly working wasn’t about making money it was about pursing a passion and it changed everything. I started to focus more on doing things day to day that I cared about instead of just what I told myself I should do. And as the rules I had enforced before began to fall aside, there was real beauty in putting my life back together in a less rigid way.
It didn’t happen overnight. It was a long process with plenty of bumps along the way. Let’s face it, I’m still wired pretty tight. And I still have plenty of goals I’m striving to achieve. But I’m much more forgiving of myself these days and have learned how to step back when I need a little room to breathe.
When I started Feel Your Boobies®, I certainly never expected it to change my life. In fact, I actually never even really meant to start it at all. During my treatment I just made a shirt with a friend of mine that said “feel your boobies.” Just as a way to remind my friends that they should be doing it…after all, it saved my life. Yes, even in my small boobies, there was a lump. One that doctors didn’t feel when I religiously went to my annual exams each year.
But then the t-shirts took off. They had a life of their own, and pretty soon they took over my life.
My one page website went viral. I had only shared it with my friends who lived near and far to let them know they could buy a shirt, but soon I was receiving orders from across the country from women I didn’t know. The message was spreading.
So my parents and some loyal old friends would come to my house every few days to fold, pack and ship the shirts. I was still bald, still in treatment, and this fun summer project little by little soon turned into something much more. In just a couple of months, I sold about $15,000 in t-shirts and donated it to breast cancer non-profits that I knew could use the funds. But soon, I began to examine what was happening a bit more deeply and realized that this was much more than a t-shirt. It was an opportunity to reach young women with a message that was never really targeting them before. Using language and methods they could related to. And that’s when I formed the Feel Your Boobies® Foundation. A non-profit dedicated to targeting these young women with a call to action that saved my life.
You see, t-shirts were just one method that we could use to spread the message, but I realized there were so many other ways to intersect with young women who needed this reminder. And that sent me on a mission to create what would soon become the Feel Your Boobies® movement.
The goal of the movement was to be a “friendly reminder when you least expect it.” Which means, we had no plans of creating mint green brochures to put in doctor’s office waiting rooms.
But we did have visions of flying an aerial banner up and down the Jersey shore all summer long to reach all of those young women sunning themselves on the beach. We didn’t use images of older women feeling their breasts, but we did use hip artful graphics that resonated with the younger population. We didn’t use statistics about how you might be the 1 woman out of 8 that would be diagnosed with breast cancer, but we did ask “are you doing it?” You see, all we cared about is what is really important for young women and that’s getting to know what your body feels like. Feel Your Boobies®.
And in the years following the initial t-shirt craze turned into something big. We launched multiple award winning social media campaigns simply designed to engage young women with our message. Now this was in 2008-2009 before Facebook is what it is today. We reached 1 million people on what was then known as Causes on Facebook, making us the largest breast cancer “Cause” they had. We neared 400K followers on our Facebook page because of our campaigns. Campaigns like Free Feel Your Boobies® Car Magnet, Boobicon.me , YouBoob Funniest Video contest and the Boobies Bus. And once we even crashed Yahoo servers during Free Feel Your Boobies® Car Magnet campaign where we offered FREE car magnets just for sharing our message with a friend through a Facebook app. Yeah, to the tune of like 25,000 magnets in 24 hours. Ouch…we weren’t planning for that!
All from my pink garage, in my small house, in my small hometown in Central PA.
There was nothing about what we did that was conventional or traditional as other breast cancer non-profits had. It was intentionally left of center, because to reach young women who, like me, never think about breast cancer, you have to meet them where they are. In a place that doesn’t feel like mom is preaching, or like it’s a to-do on your list that you know is important but…
Like working out, like flossing your teeth, like eating well…we all know we should do these things. But sometimes it just doesn’t happen. Because life happens. So I thought if we could find a way to insert the Feel Your Boobies® message in places where life happens…then maybe we’d be on to something.
Turns out we were. Because in 2009, we got our first testimonial. From a girl named Holly in Phoenix. She emailed us to tell us that her friend shared a Facebook posts from one of our campaigns. An old friend, someone she had reconnected with through social media after years. And our post made her laugh, but later that day in the shower…she felt her boobies. And she found something.
Age 39. Wife. Mom to two beautiful young girls. And she soon found out she had breast cancer.
My simple call to action was working. And in that moment, I knew that Feel Your Boobies® had a place in the world and that my campaign was saying something big. Something simple, but something big. In my way. In a way I felt was missing. And it gave me the confidence, determination, and inspiration not to quit.
And Holly wasn’t the only one. Then there was Janette in Kansas, then Lyn in North Carolina, Michelle in Maine, then Bria, Laura, Michelle and Rachel. And more.
I can tell you with absolute certainty, that there is no better feeling than to feel like the work you do on a daily basis makes a difference. Through breast cancer I found a purpose and a passion that allowed to me to combine my personality with my skills and like that, a gap in the universe was filled. All by accident. All from a simple t-shirt that was simply a summer project. Because I got breast cancer at an age when I shouldn’t have.
So when you have that feeling that something matters, that something makes a difference…keep doing it. I always say that passion is like an addiction. It’s something you just do, you don’t have a choice. It’s just a part of you and you think about it whether you want to or not.
Feel Your Boobies® is that for me. It’s changed my life and it’s saved other women’s lives. It's my “Say Something Big”.
Becoming the Bald Ballerina is how Maggie “said something big.”
When talking about her experience, she’s remarkably mature. She shared openly that she was never a huge fan of her large breasts and so in some ways she viewed her double mastectomy as welcomed. She also knew she wasn’t planning on having children so many of the conversations the doctors carefully approached with her about fertility were met with a surprising calm. The normal things you might expect a young 23 year old woman to be understandably shaken by were not the things that rattled Maggie. Because Maggie is nothing short of amazing.
What could have easily broken a women at any age put Maggie on a path to use her passion for dance to help others. She quickly reframed her goal of being a dancer into using her gift to inspire young hopefuls. She created the Bald Ballerina with the goal of using her journey to educate others about breast cancer and be a role model for the next generation. When talking about having to leave her life as a professional dancer, she doesn’t talk about it with sadness. She talks about how her path has led her to a place where she can ignite a passion for dance.
Each year she hosts a “No One Can Survive Alone” benefit concert, featuring Maggie and other professional dancers to raise funds for her medical expenses related to metastatic breast cancer.
As of today, Maggie is considered to have no signs of active disease in her body and she continues to focus on living out her days using dancing to heal…both her and others.
Launching AnaOno Intimates is how Dana “said something big.”
Dana was a fashion designer. She was living life to the fullest at the time of her diagnosis, but her journey changed everything. Her mastectomy left her feeling less than sexy and before long she found herself applying her creative abilities to solve her problem. And AnaOno was born.
With her fierce passion and unstoppable spirit she put her idea in front of the right people and launched a her own line of undergarments. Based on her own experience she knew that the body changes a woman faces coming out of breast cancer can have a profound impact on intimacy. And so she set out to design pieces to make women who have gone through breast cancer feel sexy and beautiful. So by solving her own problem, she has found kindred spirits in other women who benefit from her passion.
AnaOno Intimates has been featured at NY Fashion Week where they have young breast cancer survivors of all shapes, sizes, and colors boldly take on the catwalk with pride. Her work not only changes the private lives of the women who enjoy her line, but also bravely makes public the reality of what breast cancer looks like.
Starting “Don’t be a Chump. Check for a Lump.” is how Holly “said something big.”
During chemo Holly lost her beautiful red long hair. Hair that she loved and that she had a hard to accepting the loss of. So Holly got busy figuring out how to help other women going through what she had just experienced. She started an organization that not only reminds other women to do self-exams but it raises money to provide free wigs to women in the Phoenix area who are going through breast cancer.
She called the organization “Don’t be a Chump. Check for a Lump.” She setup a website and got busy planning their first “Wig Out” event. And the rest is history. Since 2009, the organization has provided nearly 1400 wigs to women who need them.
Bringing the Healing Chair to Kansas City is how Jeannette changed the world.
Coming out of her experience, with a fierce desire to model for her daughters that giving back is part of healing, she decided to launch a local chapter of an organization called “The Healing Chair.” She contacted the founder of the organization and got busy setting up shop.
The Healing Chair provides chairs to newly diagnosed women to ensure they have a comfortable place to heal throughout their recovery and treatment. Jeannette along with other angels she has enlisted deliver these chairs and get to have a direct impact on the families and survivors they meet. Over time they have partnered with other local companies to provide additional items of comfort to help these women feel supported by a larger community.
Since 2015 when Jeannette brought the Healing Chair to Kansas City, they have provided over 600 chairs breast cancer survivors.
Tyrisha’s STory (IN PROGRESS)
TESSA COMMENTS: Sounds like she’s changing the world with her strength and her courage. You could say something about how you first met her. The small things we do still change the world, point that out with Tyrisha.
Can we hear about her raising her babies, how about how you met her printing flyers for her event, or how she is raising awareness for women in her community (remember, I had no idea about the higher risk for black females until you told me, could be something to add here. Tyrisha is a hero to those who know her, don’t discount that. Her say something big is her grace and her attitude that she has to live even after her cancer came back. THAT’S ENOUGH. Tell us about that because 90% of the women who read this book will fall into Tyrisha’s category of just wanting to live not wanting to start some business or non-profit. =)
You CAN “Say Something Big”!
Personally, I never really planned to “say something big.” After all, at 5 foot 2” there has never been anything “big” about me. Though I can assure you I’ve never been called shy, and most definitely have been called blunt, but “saying something big?”…that’s just not something I set out to do.
And that’s just the point. Many times “saying something big” isn’t about sitting down and plotting out a detailed plan; it’s about being yourself, and being aware of what makes you feel passionate and connected to other people. And when you get that feeling in your belly (you know that tingly feeling I’m talking about) then you know you’re doing something right. So keep doing it and don’t give up.
Turns out three simple words changed my life in a very BIG way: “feel your boobies®.” Not only did the actual act of feeling my boobies save my life, but spreading this simple slogan to other young women has become my personal mission and passion. People often say to me, “Wow, ‘feel your boobies’. That’s so simple, I wish I would have thought of that.” The truth is, I didn’t try to think of it (and I’m sure I’m not the first person that has said it). In reality, it was just my heartfelt way of sharing my experience with friends to be sure they were doing it. And the slogan caught on.
Believe me, back in 2004 when Feel Your Boobies® was just getting its legs, it took a lot of hard work and confidence in my message and approach to keep pushing forward. My vision wasn’t always shared, embraced or understood by others (and honestly, sometimes that is still the case). But with commitment, passion and a fierce desire to make a difference I have created an opportunity to dedicate my time and career to something I just love doing. I get that tingle in my belly when I realize our campaign has changed or saved someone’s life. It’s in those moments I feel totally in sync with myself and the world and I can’t imagine doing anything else with my days.
The women in this book are proof that we all have something BIG to say, in our own way. What BIG thing do you have to say?
Big Lessons from Little Lumps - The Next Chapter
REWRITE/ADD TO THESE
Attitude is everything.
Being down doesn’t mean being out. For all of these women, they exude a sense of calm and happiness that no doubt is a result of deliberate choice, not accident. They have chosen to frame their situation is a way that sees the good, acknowledges the bad, and focuses on what’s next, not what was. They have all experienced profound periods of doubt and desperation, but were brave enough to see past that, seek help, and believe that brighter days were ahead. There is also a sense of true acceptance of the reality and gravity of what they might (or, in some cases will) face in their future—death because of breast cancer.Kindness is crucial.
Practice compassion with yourself and lower expectations for who you think you need to be, and embrace who you are.
Impact is simple.
You have magic in you, that just might be the magic someone else needs.
Passion over paycheck.
Purpose over ________ .