Speech given to Cancer Resource Network/American Cancer Society, September 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.