Be The Change Part 1: Waving Pink Ribbons December 14, 2011

As I finished up school for the semester, Pinktober came and went along with most of the marketing that goes with it. The prevalence of pink ribbons everywhere reminds me to celebrate my own life, as my breast cancer surgery took place dead center in the middle of October three years ago. Back then, the fact that someone was wearing a pink ribbon made me feel like they were on MY side even though they didn’t know me – or know I was undergoing treatment. I felt a part of a sisterhood instead of a freakshow.  Knowing I was not fighting alone saved my life just as much as my treatment, giving me courage and support to do what I needed to do no matter how hard. That is not a small thing to someone newly diagnosed.

But this October, my email was full of blogs from breast cancer survivors who were fed up with the marketing surrounding Breast Cancer Awareness Month. Tired of Komen’s attempts to copy-write the term “for the cure” and lack of actual dollars spent on finding that cure (relative to furthering Komen brand marketing), these women were justifiably frustrated. As the media portrays survivorship with the effervescent cheerfulness of pink boa’ed women marching, women remain sick, un-cured and looking for away to prolong their life with some dignity. There is justifiable concern that we have glossed over the reality of a disease we barely understand and don’t know how to prevent – one which we can only treat with highly invasive methods, and have not come close to curing. Many women are not celebrating during breast cancer awareness month; they are at home on couches and in bed, frustrated that they are forgotten, knowing they will likely die before a cure is ever found. An unpopular story in the media seeking a positive light on the current “favorite” disease.

I understand.

As we celebrate or survivorship, these women with metastic cancer, who have lost their hair AGAIN, who are suffering from lymphedema and having to display handicap parking stickers before they are forty because they are too sick to walk, must not be forgotten. For them pink ribbons are not enough. Too frequently these women, still fighting long months and years after their diagnosis, get pushed to the background in the “fight”, while we who have survived march and wave pink ribbon flags, and go about our lives more or less as we had before.

I understand the frustration around pink ribbon everything and fundraisers that don’t result in significant change. But, we must start somewhere. “Small” things can make a difference while we also keep pushing for better services, treatments and a cure.

Recently, a breast cancer blogger I follow wrote a blog piece about whether or not it is okay to “indoctrinate middle school kids into the pink ribbon culture” by public schools endorsing a breast cancer fundraiser to “pink the town”. These youth raised significant funds for the program Breast Friends, (a resource for ALL women’s cancers) that provides (among other things) financial resources for women undergoing cancer treatment – a highly worthy cause.  And yet, she felt questions were raised regarding this praiseworthy fundraising event.

The article questions making breast cancer more important than other diseases, and raises concerns regarding the predominance of “preventative” education – inaccurately promoted educational content for a disease we have no idea how we get. Then there is the disturbing prevalence of using a disease to raise money for an organization in which only a fraction of the proceeds go to good use that is tainting even worthwhile fundraising efforts.

But, I think our frustration in how slow a cure is coming about causes some of us to be blind to the good that this movement has done and how  small things have drastically impacted the lives of women. Even the fact we TALK publically about breast cancer now is astounding to me.  All this hoopla has made a difference.

The thing that is most important about pink ribbons, a whole month set aside for awareness or kids saving pennies, is that it empowers people to make a difference in someone’s life.  Small change DOES matter in terms of resources and emotional support for patients and survivors.  And when we look past the marketing, we can choose to see fundraisers and pink ribbons as a reminder that we are not alone. People care about our struggles and want to do something – even children too young to know what the loss of a piece of our womanhood mean or what the reality of fighting for our lives looks like.  Empowering people to make even a small difference doesn’t take away from anyone – it opens our hearts to give more, and also teaches us to receive.

We survivors need to know we are not forgotten – all of us – healed, sick, celebrating or still in treatment. Cancer goes on for us every day, long past when the people around us have forgotten that we ever had it.  We still have to look in the mirror and face our fears in the doctors’ office.  We have been tough, but we still have our moments and people want us to know they haven’t forgotten.

Pink ribbons are not just a marketing campaign by big business, though it may have started that way.  It has morphed into everyday people trying to show support and make some tiny bit of difference. Though  breast cancer is no more important than other cancers,  it just happens to be one that so many of us are profoundly affected by through no fault of our won.  Every day people need to feel empowered – they need to feel like they have something they can do.  And, to the newly diagnosed, this outpouring of love and caring disguised as a pink ribbon, makes them feel less alone in days filled with  grief, uncertainty and fear.

Without a doubt we need to pay attention to how we donate and show support — and there are far more effective organizations than Komen. Funds are needed every month, not just October and not just for breast cancer. But because one organization has used a disease to its own marketing ends, does not mean that we should turn our backs on doing what we can –regardless of our age- to show support and make someone’s life a tiny bit easier.

Though pennies from kids may not find a cure, they will keep the power on in the home of a woman spending her money on cancer treatment. That deeply affects a life, as a does a support phone call from a volunteer or a ride or hotel room while undergoing treatment – all services that are funded by donations large and small by people who care.

Awareness, over-the-dinner-table-conversation, and pennies put into action by every day people are the ONLY way we are going to affect change in any sphere – politically or medically. Choose organizations that provide patient quality of life services or local, community resources. Keep the conversation alive, stay educated and use/donate your money wisely. We absolutely need to hold big fundraising establishments like Komen accountable for how they spend our donated money.  But don’t throw the baby out with the bathwater – donating to the right organizations can make a huge difference in the day to day lives of cancer patients. And showing support to patients goes further than you may think.

There is also a more global reason to not question whether kids doing a fundraiser is a “good idea”. Because those kids felt they made a difference, they will grow up believing in the importance of doing what they can. Our world needs less cynicism and more empowerment. As we teach our youth they can make a difference, they will feel their actions matter. And they will seek out other ways to make a difference.  Someday it could be you that benefits from their unselfishness. Our actions always matter.

This is how we change the world. Change happens through small events -each of us doing what we can – large or small. Ghandi said “Be the change you want to see in the world” . Change, revolution, healing, and a cure start with each of us.

For more information check out:

Breast Friends

LiveStrong

The American Cancer Society

The Young Survival Coalition

The American Cancer Society Relay for Life

Speech given to Cancer Resource Network/American Cancer Society, September 2011 September 27, 2011

Hello – My name is Robyn Lynn. I am a writer, grad student, mom and breast cancer survivor. Not very long ago was I was in the middle of the most difficult thing I could ever imagine going through. I was uncertain, scared and full of questions and someone stepped forward and shared their story. In hearing her words, I took courage, gained hope and knew that I was understood. This is my story.

September 19, 2008 was a day that I will never forget.

I was 39 years old, an avid skier and golfer, ran 15 miles or so a week and had been backpacking at a hundred miles most summers. I had a 19 year old daughter, a 16 year old son and a boyfriend of two years. I was getting my life together and discovering who I was as my children grew to adulthood and needed less of me.

I worked in a ski shop and had a bump on my floating rib, low on the right side of my chest, which I mentioned to my Naturopath at my annual July exam. To say she was concerned would be an understatement. I thought it was weird – clearly the bump was from smashing into something at work – a fairly normal occurrence for the only girl working in a warehouse and shop . It was nowhere near my boob. She insisted on a mammogram and ultrasound immediately. I had never seen her so adamant about anything

Even though my doctor said the tests were urgent, it took a couple weeks to get scheduled. At the clinic, I was shaking and anxious and wouldn’t let my boyfriend and parents out of my sight. It was my first mammogram and the technicians turned out to be customers of mine. We talked about skis to put me at ease. Then it was on to another room  for the ultrasound, but the technician focused on my chest, not where the bump was. I didn’t understand why but I would.

I will never forget returning to the mammogram room and seeing the films up on the computer screen. There was my breast – covered in beautiful tiny little constellations of stars – some so dense you could no longer see individual specks. It took my breath away. I knew it was not supposed to look like that. The nurses were very sweet, they talked about calcifications being normal and that most likely that is all it is. We would do a biopsy to make sure, but since I had no risk factors there was” little to be concerned about”. I was stunned.

I tell people it is slow to get diagnosed and once you are, the wheel spins out of control. It took more time to get scheduled for the next test and August rolled on by. I remember nothing of the biopsy in September, which tells me something about my stress level. I had no idea what was going to happen.  I didn’t want to research online.  There was no one to ask questions of or talk to about my fears.

The biopsy was on Monday and the results were supposed to be back on Wednesday – but no call. Didn’t hear on Thursday either. The waiting was horrendous.  As the end of Friday crept up, I called nurse asking for any information before the weekend came. My phone was in my pocket and around  6 it rang.  Heart in my throat, I waved my boyfriend (also an employee) into the backroom with me as I recognized my doctors phone number. My hand shook as I answered. She wasted no time. “I am sorry to tell you this but you have Ductal Carcinoma Insitu. It is non-invasive, but extensive. Your only option is a mastectomy.” There were more words but I didn’t hear them. I fell to the floor. The air left my body. I thought I would faint. I never thought of myself as being that dramatic, but when told you are going to lose a body part, that the rest of your body collapses in sympathy.

How could this be? How could I – an athlete, a health nut, a mom with no risk factors, have cancer?  Why didn’t I have a lump or something that would have warned me?  How could there be so much of it? Am I going to die of this? WHY ME?

I gave myself a month to come to grips with it, something at the time I thought was possible. Come to grips with losing a part of you? Come to grips with having Cancer? Come to grips with who knows what horrible treatments? Now I know – there is way to absorb it, to let it sink in, to come to grips with it. It doesn’t ever seem real. You don’t get to process it. You never return to normal, or the way things used to be. It is often a nightmare, but more often just IS. You do what you need to do to save your life and as I found out, in the end you re-discover what your life really is.

I had loads of support — the pink ribbon industry had done its job well in educating the masses, but unfortunately no one was my age. I had tons of questions but no one to ask. I didn’t want to sit in a room of 60 year olds, as supportive as they may be.  I wanted someone to talk to me about reconstruction and how bad their scars were. I wanted to know how they talked about cancer when they dated.  How was I going to look? Would I ever wear a bathing suit again? Was I going to ever be the athlete I was? What does this all mean and who am I now??

I knew no one my age that had cancer except my cousin Jody. But hers wasn’t going well. She had also originally been diagnosed with DCIS and had a “breast conserving” lumpectomy thinking that would be good enough and wouldn’t leave her looking strange.  But it wasn’t. Cancer returned in her organs and eventually her brain. At the time I was diagnosed she was undergoing a second round of chemo. She was a single mom my age with two daughters just a little younger than my own kids. We weren’t related by blood, but had grown up together. We didn’t talk much during our ordeals, but she told my mom to tell me to do everything I could do and don’t stop. On my two year anniversary I spoke at her funeral.

Cancer took away my choices. That was what was so disempowering. I did nothing to “get this” – in fact, I had done everything right. I ate organic and had been vegetarian for half my life. I had no risk factors. I felt punished for something I had not done. And lucky me, because the cancer I had didn’t usually get this bad, they didn’t really know what to expect and there wasn’t a clear protocol for treatment. I was an anomaly in unchartered territory and we were hoping for the best.

The only thing anyone could tell me is was what wasn’t a problem – the original bump that got this whole thing started. It turned out to be nothing and completely disappeared the moment I was diagnosed. I tell people it was a message from my fairy godmother ….my angels were watching out for me. If I had not found it right then, it would have killed me by the time I did. That is all there is to it.

I had surgery on October 22. Luckily the cancer really was non-invasive and the lymph nodes they took were clear. But the whole breast was full of cancer and I had less than 1mm of clean margin. I suffered horrible, painful and permanent neuropathy from surgery, my body rejected the sutures leaving a gaping hole in my chest for a month and I had permanent scaring from third degree burns that began on day 10 of 36 radiation treatments. Good thing no one mentioned any of this as a possibility because I would never have thought I could handle it.  I was glad to be alive, but the cost was tremendous. Everything was difficult, new, scary and painful. My life was completely different than I ever would have anticipated and I had no idea of what to expect of my future.

About this time I received a call from I received a phone called from a volunteer for an American Cancer Society program called Reach To Recovery. A Patient Navigator at the hospital where I had surgery had asked me (while I was drugged up) if I was interested in talking to another breast cancer patent and I had said yes (what else would I have said at the time??). I had no idea what life was going to be like in another month or two or six, but I desperately wanted to talk to someone my own age that I didn’t have to be optimistic with.  Someone that just knew what this was like without being told.

The phone call was to change my life. I remember where I was when I got the voicemail she called. I remember where I was when I called her back. I remember sitting on the floor crying because she understood. Really understood. Michelle was my age…with a lot of similar issues She answered my questions about relationship stuff, treatment and reconstruction with deep honesty. She shared herself – very personal, intimate and real. She was the only person I ever saw, or talked to, that was my age and a survivor. She made suggestions, talked about her own reconstruction (which she loved) and scars (which didn’t show) and about how one man in her life didn’t handled cancer  (and left) well and the next on did (and they got married). Talking to her made a huge difference to me. She helped me see what was possible for me at the end of all this. I wasn’t alone anymore.  I knew immediately I wanted to make that difference for someone else.

I had no idea until cancer how strong I was. I had no idea who I was. Being told you have a life threatening disease you had no idea you had is terrifying but  doing what you need to do to get rid of it is the easiest decision to make in the world. The journey is often unbearably hard, and lonely. But my story is not horribly unique and that is why I tell it here in such detail.  It is the story of many women who are diagnosed with breast cancer. In this most private and frightening time, we need to know we are not alone – we need to hear that in the end, we will have received far more because of cancer than we have lost.

Because of Michelle , I became a Reach To Recovery volunteer  for Snohomish County  and now am the Reach Coordinator for my region. I also am part of an small call list of  volunteers who contact  women in remote areas with no other resources or for whom their local division had no match. As Reach Volunteers we provide direct and immediate support to women with a breast cancer diagnosis. I cannot stress to you enough how important this is: DIRECT AND IMMEDIATE SUPPORT in what seems to be the worst time of our lives. At so many moments in my own diagnosis, treatment and survivorship I could have used a phone call.  When it came, I was eternally grateful.  I am now that phone call for someone else.

Reach Volunteers are matched as closely as possible in age and diagnosis to the women we call, providing connection, resources and empathy that cannot be gotten elsewhere. Depending on when the patient is provided with information about the service, support can come quickly – often even prior to surgery or treatment. Even when it comes later, we still talk about long term physical and emotional self-care as women embark on the next phase of their lives as survivors. We answer questions about our personal stories and treatment, give encouragement and listen to theirs.  We have access to resources about treatment and reconstruction options, financial assistances, rides, and more.

I generally speak to women who are between the ages of 30 – 50. A Reach call for me starts off something like this:

“Hi, my name is Robyn and I am a Reach to Recovery volunteer with The American Cancer Society. I understand that you have been recently diagnosed and wanted to speak to someone that was you age about what you are going through – and that would be ME! You can ask me anything, we can talk about anything, I am here to be that been-there-done-that-person. Nothing is off limits. How ARE you????”

The conversation evolves from there. Sometimes they seemingly have had a list of questions they’ve waiting to ask someone. Sometimes they just need an ear to listen to how mad or scared or frustrated they are. Sometimes they cry, always we laugh. I can usually hear a cup of tea, a glass of wine or a can of beer being sipped. Often they are cooking dinner and I hear their family in the background or wait while they deal with a kids’ crisis. But I have been there too.

These women are UPS drivers, garbage truck drivers, business owners, dance teachers, sled-dog mushers, stay at home moms, firefighters.  They are active and have years and years ahead of them in their careers and families. They want to know how to move from disease to wholeness again.

We talk about diagnoses, how we don’t have time for this and frustrations over employers, friends, family and lovers. We always talk about treatment and meds  - always stressing that my story is my own and each woman is different.  In the first 5 minutes of every conversation we always talk about reconstruction. (Which I did not chose to have) .Always they ask how I am doing — timidly, with a question mark, and I can hear their relief through the phone when I say I am doing great. There is laughter and anger, cussing and tears as we talk about fears, love, energy, work, intimacy and families. And about WHY. After an hour – sometimes even more – I hang up after telling them I am completely available to them any time they need it –  in a day, a month or a year –  I am here. Sometimes they call out of the blue weeks later or I run into them at an event. These women are always relived to talk to someone that speaks their language, understands their issues and that they can be honest with. It makes a difference.

I will be honest – I am not always the stellar volunteer and sometimes it is hard to make those calls in the middle of my grad school work and fulltime day job. But when I hang up I ALWAYS feel like I just received a gift – not that I gave one – I RECEIVED one. Making a difference in the lives of women who are scared, tired, frustrated and worried,  MATTERS. I was them not very long ago. Because a volunteer stepped forward, I began to believe that there really was HOPE for a better life after cancer. When I was “trying to come to terms with it all” there was someone there to talk to. Because someone shared who they were with me, I became an inspiration to others.

I encourage you to be an inspiration. As you actively promote ACS patient services like the Reach To Recovery  you change lives. In some cases, connecting someone with a volunteer while they are in the crisis of finding out they make die, reminds them that they still have a life that is worth living.

Reach To Recovery is just one of the many patient specific programs ACS provides. My father is an in-hospital volunteer through the Cancer Resource Center at Providence Hospital in Everett, WA. The Resource Center (an American Cancer Society funded, staffed and trained center) at Providence Regional Cancer Center is an 800 sq ft. room on hospital premises complete with a fireplace and couches and an across the lobby coffee stand. The CRC provides information on all types of cancer and related treatment/medication information, newly diagnosed patient gift bags (hear love bags), wigs and prosthetic fittings, hand knit blankets and hats, scarves  and scarf tying classes, available to patients and their caregivers FOR FREE. Rides to and from treatment can be arranged and the Everett area ACS Road group has 25 + drivers.  Gas cards and hotel stays may be available. Cancer specific support groups and classes are also offered for minimal cost on everything from Body Image to Meditation and Yoga.

Dad spends a great deal of time in the chemo lounge at Providence Hospital in Everett, WA. As a prostate cancer survivor himself, and the father of a breast cancer survivor, he is in the unique position to speak on very personal and intimate terms with patients undergoing the two most common types of cancer. He knows the nurses in the lounge and spends hours each week, wandering through in case someone is in need. He spends much of his time listening to patients talk about what they are going through, providing support resources for patients and their families while they are undergoing treatment. I know for a fact that many of the patients he has spoken with continued their treatment plans because my dad was waiting for them to show up, and if they were late – well, they knew he would call them. Having someone to talk to is important to all of us but when you are afraid, sick or in pain, is especially important to have access to someone who has been there, and has come through the other side. We give hope.

My personal platform is that every woman with a breast cancer diagnosis needs to know that they have the ability to speak to someone who has been in their shoes. I would love to see women getting phone calls BEFORE their treatment, instead of after so they have someone to talk to about their fears from the beginning.  This means we need to develop close connections to doctors and hospitals so that we can get the word to newly diagnosed breast cancer patients that a Reach To Recovery volunteer is available.  And there needs to be a dramatic increase in volunteers like my Dad (although please don’t clone him – I don’t think I could handle it!).  We need survivors to be able to speak with patients at the hospitals while they are undergoing radiation or chemo, so everyone has access to a survivors message of hope and a better life despite cancer.

We must also increase the number of volunteers and actively seek out volunteers who are able to give of themselves. They need to know that it takes only a couple hours of time each month  to change a life – and they can do it their jammies! People think of volunteer work as a huge, rarely convenient,   long term time commitment. Reach is not like that. Most women would give be willing to talk to someone once every month or two if they knew how little it took to give so much. This is not a huge commitment but the result of our efforts is immeasurable.

We have a particular shortage of volunteers  who are outside of the median age of diagnosis. We need to recruit women in their 30’s and 40’s to share the unique concerns of young survivors. ACS needs to put a face on young breast cancer survivors who feel particularly alone in a culture that says cancer happens to your mom or your grandma not you.  My Dad speaks to an alarming number of young men with testicular cancer under the age of 25 who have NO ONE at all to speak to about their diagnosis. It is terrifying to be young and fighting for your life when you are already trying to grapple for control as an adult.  Young survivors concerns are unique and their approach to treatment and to long lives as survivors is also.

Anyone with a cancer diagnosis,  or who has journeyed the road of survivorship as a support person, is in great need  because of their unique understanding the  tremendous toll cancer takes on us all. Non-survivors can understand, but it the person who has really walked that path has more “street credibility” and immediately is able to understand and respond to a patient’s emotional needs.

We have an opportunity to make a huge impact as individuals. When it was determined that the bump on my chest that started it all was nothing, I saw it as a sign. I was saved for a reason, and I believe this strongly. I must make the most of my time here. Because I have walked a hard road, I have great empathy for others who must walk it. Because it is easy for me to speak out, I feel I must because so many have no voice. Because you have chosen to do the work you do for ACS, you must also feel similarly and I thank you for your service. Thank you for giving me, and so many others like me hope. Know that what you do matters to us profoundly.

It is often hard to feel our day to day jobs feed us no matter what they are. We burnout, get lax, forget stuff, and go about our work day a bit grudgingly. But I am here to tell you that WHAT YOU DO MATTERS at the deepest heart level to the women that receive a phone call from a volunteer like me. By your efforts to actively promote the support services of The American Cancer Society, patients are given hope. They are given time in which they feel the matter. They are able to share their concerns and their triumphs with someone who is in the unique position of knowing exactly how they feel. They have some of the weight of being a patient or a survivor alone in the world removed from them as they realize that people really do understand and care. They are, heard, recognized and buoyed up. They gain hope that their lives will not only continue, but they will be better despite cancer. What we do keeps people’s hearts alive in the most difficult moments of their lives. There is no greater gift to give.

Thank you for making a difference.

A Survivor’s Reminder April 14, 2011

Like most survivors, I am terrified of being diagnosed with cancer again.

Every weird feeling, illness or overtired day makes me think that something is seriously wrong with me. Facing these fears head on provides an opportunity to learn to stay present in the process when the fear of “what if” keeps you awake at night.

First, we must awaken compassion for ourselves.  We must treat our scared selves with the same love and caring that would give to our children or our dearest friend or lover.  Secondly, we need to clearly name the monster under the bed. Denying our inner experience and turmoil is not the solution any more than avoiding the situation is. By identifying our fears and what we are feeling, we gain the power and insight with which to deal with them.

We all have choices to make in how to view and react to the events going on around us or within us. Sometimes the choices we make about our responses are the only ones we get to make in the middle of the challenges we are facing. We can wallow in grief and confusion; be in denial, or ignore our level of fear and trauma.  We can be angry at cancer, at ourselves and at everyone around us. We can try to just get on with life and put it behind us and go back to “normal”. However, in learning to embrace our fears as part of our inner make-up and not deny their power allows us to create a deeper understanding and compassion for ourselves and ultimately for others as well.  By continuing to engage in life fully, even when we are scared, we grow richer in our ability to love and to heal ourselves and those around us.
- Robyn Lynn, Everett, WA

(Published  in the American Cancer Society Volunteer  HOPE newsletter April 2011  –   excerpted from a previous post: Warrior Training)

Rules are meant to be broken October 17, 2010

(The following is the speech I gave at the Providence Comprehensive Breast Center Tea 10 – 18-10)

I am a rebel. I wasn’t the kid that got into trouble – my moral compass was too strong and my parents were WAY too strict, but I have a really hard time following rules. There just always seems to be a different way of doing things than the one everyone else sees. There is an element of surprise and creativity it it…I am  unpredictable…you never know what I will say….but growing up I often felt alone in my path of exploration. This lead to numerous  detours that were frequently beautiful and certainly unforgettable but often tedious and overly drama-filled.  Recently my rebel life took control in order to teach me some BIG cosmic lessons about taking the road less travelled by introducing me to my ultimate new rebel acquaintance – cancer.

Not that anyone is “supposed” to get cancer of any sort but I DEFINITELY wasn’t. Previous decisions to not follow the beaten path resulted in me having children -and breastfeeding them -really young.  My career choice of working in the outdoor industry broke all the rules about growing up and having a “responsible” job but left me with lots of play time and in great physical shape. I actually followed all the rules about not smoking and eating right which SHOULD have resulted in ZERO risk factors for having breast cancer at the age of 39. But CANCER decided to forge its own creative path and found an ideal match in me and my right breast.

True to its host, this cancer didn’t follow the rules ….I had DCIS which is SUPPOSED to stay relatively small, SUPPOSED to be found by a lump or a mammogram when you are older, and SUPPOSED to be easy to treat. But my rebellious nature had taken hold here too, and the DCIS in my breast was EVERYWHERE, leaving less than a millimeter of margin before it was in my chest wall. And it was a sneaky rebel….there was no sign that it was there, no symptom, no lump, no nothing until the mammogram found it. Should I have been surprised when the doctors told me DCIS never gets this bad…that there were so few cases of it being this extensive?  The only tried and true protocol for treatment was too cut the whole thing off and turn my chest into a radiation induced dead zone. Now, I was not only a freak, but I was a freak with one boob.

Having spent so many years feeling like I alone in my unusual perspective and approach to life, cancer  was the start of meeting many people who were also rule breakers and rebels.  My doctor didn’t follow the rules because in order to get moving quickly, she told me I had cancer over the phone, while I was at work, on a Friday night. My girlfriend who was working with me when I found out didn’t follow the rules because her first comment when I told her was “Damn it!  Now you are going to get a boob job before me!”

When I was diagnosed I told Neil,  boyfriend of 2 years,  that he didn’t need to stay with me since I didn’t want to burden him with my diagnosis and treatment. Another rebel of a sort, he told me to shut up and went back to watching tv  — and  started shopping for a house while he sat with me in the hospital the day after surgery. We moved into our new house together the day before my last radiation treatment 4 months later.

I guess my son Eric forgot to read the imaginary rule book I was handed about the  scary potentials  of a cancer diagnosis because he swears he was never worried that I would die or stay sick. He was also the one who hugged my “real side” and my “fake side” and said I felt the same which is a stretch for a kid of any age.  But my adult daughter Megan didn’t follow the rules either and instead of being there for me the diagnosis was too much for her and she retreated into disinterest and avoidance as I went through the biggest event of my life. This is an act which she regrets to this day  and never misses a chance to tell me how much she loves and supports me.

Contrary to what I might have guessed I would do in this situation, the day before my surgery I golfed with 7 of my best guy friends and played my best round of the year. This was an act of defiance on my part and a stepping out the box for these men, who uncertain as to how to show much they cared took me out to play and bought me beer.

The day of my surgery  found me on the rooftop of the parking garage engaged in a brief Native American  healing ceremony  and as I walked through the doors of the hospital smelling of sage smoke, I am certain that some people wondered if I wasn’t breaking some LEGAL rules before my surgery!  And as I lay on the gurney waiting to be taken into the OR with my family around me laughing hysterically at all the stupid things there are too laugh at under such stress, I am certain that we broke social codes about appropriate conduct before a “serious event”.  I am ever grateful to the nurse let Eric  climb onto the gurney with me so he could hold me while the injected the “sleepy juice” into my IV…certainly a departure from the norm for the hospital, nurse and the normal behavior of 16 year olds!

There was “bad” too….after surgery my body rebelled and rejected my sutures which resulted in months long healing process and delayed radiation treatment.  Tired of the whole situation, my body refused to play nice with radiation which resulted in a 3^rd degree burn from day 7 with scaring that remains with me to this day.

And ultimately, my insistence that I do this my own way left me deciding not to put my body through more and I decided against having reconstructive surgery. I also quite the drugs they gave me to reduce my reoccurrence risk but that were turning me into a blob.  Sometimes the decision to not get a new boob feels like the biggest rebellion yet. I feel like an alien in our youthful fashion and appearance oriented culture.  Never mind that on the outside I look like I have two boobs…I have to search hard for bra’s that don’t look my grandma’s that can be converted to having a pocket for the prosthesis.  I can’t wear anything that has a neckline unless I use double-stick tape to keep it in place.  And shirts to wear in yoga?  Ridiculous. After the day that my prosthesis fell out of my top during my yoga class I became much more cynical about the so called yoga attire sold in magazines. As a dedicated yogini, I had thought this was my worst nightmare…. A quiet room, the only sound the deep uji breathing of the people around me in headstand, then PLOP!  the sound of silicone hitting the wood floor. But true to my rebellious nature….I got the giggles and left to put myself put back together.

Carving my own path meant that I became a local and national Reach To Recovery volunteer  for The American Cancer Society – position that puts me in contact with lots of women diagnosed at a similar age. The national program serves women in remote communities and I have meant some serious rebels there. One of my favorites was a lady in a town so small it only had a bar and a post office.  She worked as the town garbage woman during the day and then at the bar (which she owned) all night. One time one of her customers commented that she was bitchy to which she responded “Yeah? Well I have breast cancer.  What is YOUR excuse?”. To the customer that fell asleep at the bar she had this to say:  “Buddy, I had chemo yesterday and you don’t see me asleep on a table!”.

I have met some tough amazing women who have had to fight the odds in order to steal another year, or two, or ten from the grips of a diagnosis that seemed at first like a pretty hard rule to break.  I have met women who because they broke the rules about not talking about “that kind of stuff” changed the way our healthcare system, our government  and our family and friends talk about and treat us as patients and survivors. I have met doctors who took risks, bent rules and rebelled against the norm in order to pursue better quality of life for the men and women they work with.  I have met men who dropped the rules about being macho in order to wear pink to support the women in their lives and boys who wear “I love Boobies” bracelets because they support breast cancer awareness and NOT because they just really liked to be titillating (pun intended!).

I continue to be in awe of the strength and courage that this disease brings out in each one of us that have been impacted by it. I have found strength, support and solidarity in the very same place that I rebelled against so vehemently. My mom was the person who I told I had cancer and I will never forget how brilliant blue the sky was as I listened to her cry on the other end of the phone. She walked every step of this path with me and that was the only time I heard her cry.  I am sure there is nothing worse than hearing that your child has cancer.   And who knew that my main source of everlasting frustration as a teen and into adulthood would become my biggest support person because he had walked a similar path? My father Bob, a prostrate cancer survivor, became a volunteer with the American Cancer Society even as he continued to face his own challenges in coping with the repercussions of his treatment. How brave to cheer others on when he is often angry, frustrated and grieving his own losses. How immensely strong he was to face his daughter’s breast cancer and be there to talk about intimate things not normally shared by father and daughter.  And though he would never call himself as such, he too is a rebel who befriends every cancer patient no matter how sick, crabby, or in denial they are in order to help them find their own inner strength.

Being a cancer rebel is still hard even surrounded by such amazing people. As a person diagnosed young I find few women who face the same issues of dating/relationships, trying to manage family & career & cancer exhaustion, and especially all body image pieces. I speak out, and up for other young women facing similar issues. I carve my own path that is every bit as full of twists and turns as my pre-cancer life was. I began writing about my experience, as many who have been through this do.  My blog Becoming Amazon,  integrates the lessons I have learned throughout my whole life in order to reach people who may not be cancer survivors but find themselves questioning the “norm” in the same way I always have.

I was recently published in a free e-book called “How We Became Breast Cancer Thrivers” and found myself amongst more than 40 women – most of whom were much older and far more successful than I. At one point in my life I would most certainly labeled most of them very “normal”  opposed to “rebellious” but now I know they  fought off cancer too.

I was still a little worried about my submission, which was clearly NOT normal, safe or remotely close to socially correct. The editor Beverly Vote wrote me a note regarding my submission that said “ You have raw authentic courage and your message will be thought-provoking for many, which is a marvelous thing… shake some readers out of their safe pink box”. Hmmm…with all that had happened to be in the past couple years, I thought that maybe I was done rebelling and just would get to live a quiet, very normal life. But instead I see that the road before me continues to be one of breaking rules, shedding light into dark corners and being the sort of person who continues to look for other ways than the norm.  Only now I do this as advocate for a larger cause….I join the ranks of fighters, rebels, warriors and rule breakers that are seeking an end to this devastating disease.

Living out loud August 9, 2010

“If you ask me what I came into this world to do,

I will tell you: I came to live out loud.”

Emile Zola

Anyone who knows me would probably tell you I am outgoing, honest, easy to talk to and likely to say EXACTLY what is on my mind no matter how politically incorrect it may be. I have heard “tell us what you REALLY think, Robyn” more times than I can count. I have had the Zola quote posted by my bed for years and have always believed that it was my spiritual responsibility to not “hide my light under a bushel” so to speak. And then I got cancer.

Being the only girl working the male dominated hardgoods department at a ski shop was a source of pride for me, and guaranteed me immediate recognition and, dare I say, popularity within the local ski community. As my mastectomy surgery date came closer, the owners of my workplace decided they wanted to help with the impending medical bills by hosting an auction. Would I be okay with that?  I was amazed and touched that they cared so much. An email was sent to all the ski related sales reps in the Northwestern territory asking if they wanted to donate something because “Robyn has breast cancer”. Now, there are a ton of reps in the Seattle area, most of whom I had a personal connection with, and donations POURED in.  As they stopped by the store to make sure I was okay I realized I had not thought this through very well in terms of my own privacy. More than one person had a complete melt-down in disbelief and sorrow over my diagnosis while talking to me. I was completely overwhelmed by everyone’s generosity and their personal emotions and of course I felt like I should answer their heartfelt questions. Shortly afterwards an email was sent inviting people to the event.  2,000+ people were the recipients of that email. AND it was posted on the website.  AND the staff, in the interest of being helpful in getting donations, told EVERY customer. So the days leading up to my surgery, when I was most insecure and afraid, I spent every day talking to people I didn’t really know about my diagnosis and impending treatment.

I took two weeks off work and returned a week before the benefit. My customers came in to see how I was doing. People sought me out to talk to me. More than a hundred people came to the event and bought auction items or donated cash. On the sales floor eyes kept sliding from my face to my chest and back up again as people tried to process what they knew I had been through and the fact that I didn’t look any different. I was so self conscious and afraid of looking weird…I wore big puffy down vests so you couldn’t see my chest and must have checked myself in the bathroom a million times a day to make sure that nothing had slid out of place. I was exhausted, took multiple naps in the lunchroom every day to just make it through the day and cried all the way home every day.  I was traumatized by my sudden diagnosis and treatment – which I had not even begun to process – yet had to talk to people I barely knew about what I was going through.

Because of having the reputation for being open, honest and outspoken people asked me  many questions ranging from the benign “what type of cancer do you have?” and  “Are you going to lose your hair?”  to the more personal “So are you just flat on that side?”, “When are you getting a boob job?”  “What do you stuff your bra with so that it looks like you have two?” and on to the one we all wanted an answer to “Why you?”. Each time I had to talk about cancer when I was supposed to be doing my job, I took a deep breath and gave them an honest answer. There were times when the questions were flat out rude and a brutal invasion of privacy but more often they were just annoying in their repetition. I thought if I spent my life being approachable, now was not the time to retreat. I saw this as a “teachable moment” for us all.  If people felt they could ask me a question they deserved the best answer I could give them in that moment. Who knew if they were going to have a mother, sister, or lover with breast cancer. Maybe the fact that they had spoken to me would make a difference some time down the road. I think the fact that I did not fit the image of breast cancer patient – I was the wrong age with no risk factors and was an athlete – really shifted people’s perspective about this disease and made them realize that it could affect any of us. At least that is my hope, and that is why I kept talking even when I just wanted to hide.

Gandhi said “Be the change that you want to see”. Being “cancer girl” was incredibly challenging as I was having enough difficulty dealing with my own diagnosis in addition to educating others or helping them cope with it too. I could have stopped at any point – I could have deflected the questions, not been so much of an open book, or shut down the conversations.  But what do any of us stand to learn from closing the doors on education, caring and understanding? A cure for a disease, compassion for people in crisis, acceptance of those that are different, or an end to the terrible acts of violence going on in the world begin with each one of us taking a moment to be a voice for those who do not have one. Using our personal experience, passion and ability to speak up about the things we believe in is the only way we are going to create a better tomorrow. It is our responsibility as children of the universe/God to stand up for the things that matter to us. No one is going to change the world except us.

Nearly immediately following the end of my treatment  I became a local and national Reach to Recovery volunteer with the American Cancer Society. I talk to women of similar age and breast cancer diagnosis about what is REALLY going on with them – one survivor to another. Recently I started publishing my writing about my struggles around body image and what I was doing to cope with the stress, fear and emotions that come up in being a survivor. Many  people tell me that even though my experience may not be the same as their own, reading about my challenges created greater understanding and the ability to look within at ways that similar issues have affected them.

I am glad that my own experience can serve my community in helping them live a more full and aware life. I feel that I am making this disease work FOR me, instead of wallowing in all the ways that it changed my life without my permission. I hope I can help other sister survivors feel less alone and to see their own inner strength and beauty. Each day I talk to people about cancer I grow more committed to the work of sharing my successes and struggles so that people will be educated and those dealing with similar challenges will know they do not fight this battle alone.  Each time I write about my own thoughts and struggles I hope that someone who needs the push, or the hug, feels that coming from me and is able to take the next step towards being their best self – cancer survivor or not. I live out loud not just for me, or for other survivors, but also so that others will know that they are supported in speaking up, for living fully, and for deeply committing to changing the world into a healthy, compassionate and beautiful place.

Fate, God, or whatever you want to call it, took me – a person completely committed to living out loud and gave me the ability to be a friendly, open voice to others who are struggling in private. I have become an advocate for the women who are also survivors and do not have the support or resources that I have had. I am the person they can  ask personal questions of knowing that I have been there and done that. (And gotten the t-shirt!)  I have put a young, athletic face on a disease that primary strikes older women, so that awareness in both genders and all ages has substantially increased. I have been a light for people who may not have had cancer but have faced similar emotional challenges in order for them to know that there is a way out of the darkness. I hope I have also been a role model to my kids about how to live a genuine life – to not believe that you are alone in your struggles, to not be ashamed of the challenges you face and to be watching for the opportunities to be of service when we least may want, or expect them. They are the next wave – it is my responsibility to teach them how to “be the change”.

Cancer handed me a lot of opportunities to “walk the talk”.  Many times I wanted to become a hermit, but as I remind other people they are not alone, so I am reminded that I am not either. I am nourished as much as I give, maybe more so, by the sisterhood this disease welcomed me into. I am changing the world with each word I write, each conversation I have, with each hug I give. By utilizing our gifts,we  heal not only our planet and our human family also ourselves. I challenge all of you that read this to look deep within at what beliefs you hold passionate and think about how you can bring this to the surface in order to create a better world. Can you bring your challenges to the table to let your experience show someone that they are not alone?  Can you use your resources to help another persons’ path become smoother?  Can you be a light for someone else? Can you speak up for those that cannot? Can you give a hug to someone that is in need?  If you are not fully you – if you are not living out loud – who will?

(Thank you to Michael Franti and Spearhead and all the other social activist artists for being such an inspiration in showing us how to use the tools we have to change the world. NAMASTE)