“It was the tilted head of concern that really drove the point home for me— saying everything without saying a word at all. It was 33 days after my 33rd birthday… I had breast cancer. I had known from the itch I had felt a few weeks prior, but I was hoping it was ‘probably nothing’ like my OBGYN had assured me.
I was in Thailand celebrating my honeymoon with my wife when I felt an itch in my breast. It was like an itch I couldn’t scratch. No matter how much I went back and forth over my skin, it wasn’t satisfied. As my skin reddened and I tried harder and harder to ease the annoyance of it, I felt a lump. It was hard and irregularly shaped and that’s when I knew something was wrong. For years prior I had been dealing with chronic fatigue, I couldn’t keep weight on, I constantly had sinus infections. Every doctor told me I was probably stressed and tired. I knew they were right, as I had just gotten divorced and rapidly fallen in love with a woman and was trying to keep it together for my two daughters. And here I was, 6 months after marrying her, wondering if I should tell her what I already knew.
I didn’t bring it up until a few weeks later at home when I felt the itch again. But this time, I felt a cool rush that almost felt like electricity down my chest at the same time. When I felt the lump it was larger. I’m not sure I was scared so much as confused. My wife and I decided I should probably just get it checked out for peace of mind. I think she thought it would be fine and I was certain it wouldn’t. The OB tried very hard to convince me because of my age and fitness level, I very likely didn’t have cancer, but sent me for imaging anyway… ‘just to be sure.’
I arrived at the imaging center in a silk leopard short and shirt set. If I was going to be told something was trying to kill me, I was going to be told in style. The waiting room of the clinic was full of women much older than me and extremely cold and beige. I didn’t realize how many of these I would see over the next year. I had never thought much about a mammogram, being that I was only 33, but I was fascinated at how many ways they could squish a tiny boob. There were mutters about calcifications and so many re-dos. I knew it wasn’t good if they kept doing them over. The woman kept leaving and coming back and doing more. My wife was watching behind a plexi-glass partition, assuring me I was going to be ok. My gut told me otherwise.
I was taken for an ultrasound in a cold, dark room. The tech did not say a single word to me. She got up and left to talk to the radiologist who walked in 10 minutes later with her head tilted to the side. The tilt of concern. The tilt a dog makes when he doesn’t understand a human. The tilt I gave my baby when she was born because I thought she would understand me better. She had tender eyes and said, ‘This lump looks concerning.’ I needed her to be blunt, to give it to me straight. I said, ‘I need you to tell me right now, is it cancer?’ I knew full well she wasn’t allowed to say without a biopsy. But I also knew full well she knew. She told me in her years of experience, which was many, there was nothing else it could be.
They left us in that dark room alone with the option to make one phone call. Steph started shaking. I had woken up a normal 33-year-old woman, about to go to work— and I was about to leave this room with cancer. This was the moment I started to plan my own funeral. Who would take the kids? Would Steph marry again? Would my kids remember me? Would people be sad if I died or just move on? Was there a way to make a funeral fun? Could there be a DJ? Would I be able to watch as a white ghost? Or would I just be a speck of dust that didn’t feel anything at all?
We both cancelled work and went home and sat in silence. There was no right thing to say, no right thing to do. We barely knew what we were up against, so we were just fighting our imaginations side by side. I was worried about her, about the kids. The diagnosis was confirmed 10 days later after a biopsy. When the radiologist called she said, ‘Your cancer is aggressive’ and I replied, ‘Great, so am I.’ But I had no idea what it meant. They didn’t tell me anything other than what size it was and what kind. I just had to wait to find a primary care doctor to refer me to an oncologist (even though I already had a diagnosis). I remember thinking, what is happening to my life?
I knew at this point I would be losing my hair and I would look sick. I teach fitness for a living. I see hundreds of people a week. I wasn’t sure if it would be inspiring to have a bald instructor or depressing. But I knew I had to go public with it. I posted on Instagram that night. I needed people to know and I needed to tell them what I needed and didn’t need. I didn’t want sympathy. I didn’t want people to feel bad for me. I wanted to be treated like me, Lianne. The fun, funny, full of life woman I am.
The response to my post was overwhelming. I was flooded with support and encouragement. I was sent coloring book after coloring book, socks and blankets and hats. But I was also flooded with stories of ‘my aunt had it and she died’ or ‘my sister’s friend had it twice and she’s great now’ or ‘if anyone can beat this, it’s you’ or ‘welcome, breastie.’ I knew then and there I needed to share every step of what I was going through. I didn’t want the pink-washed version of cancer. I didn’t need the stories of everyone you knew that had it. I didn’t need you to tell me to write my kids goodbye letters. My story was different. All of our stories are different, and a lot of these comments discounted what I was really going through.
When I finally met with my oncologist in the next beige room, I was told I would need a year of treatment, which meant 6 rounds of chemotherapy and 18 rounds of immunotherapy. I would receive treatment every 3 weeks. I would also need to have a double mastectomy. They were going to chop off my boobs. I couldn’t wrap my head around it. The world told me boobs were what made me feminine and beautiful. And while I know this is isn’t true, it’s hard to unlearn when you see it daily.
I walked into my first treatment with a smile on my face. My kids had shaved my head for me a week before. I wanted them to get used to it before I truly lost it. The infusion center smelled like sour cleaner and food wrapped in plastic. There were chairs lining all of the walls, facing each other. Everything happened in slow motion as all eyes were on me while I chose which chair I would sit in for 8 hours of poison in my veins. I was the youngest one there by 30 years. I could feel everyone trying to figure out why I got sick and how long I had to live. You and me both, guys.
The pharmacist came and told me the regimen I was on was one of the most brutal ones. For some reason I felt so grateful for her honesty. I needed a reason to be weak if I ended up being weak. She validated me. I sat there for 8 hours. Hearing the beeps of the machines and watching patients come and go. I could feel the poison entering my veins and I could feel my eyes glossing over with a thick grey film. I tried not to make eye contact with my wife. I was trying to stay strong for her. I couldn’t imagine what it was like to see the love of your life fade away, bag by bag, getting sicker and sicker.
I documented every single side effect and every single treatment for a year. I let the world see me lose my hair. I told them how my skin burned and I bled, how I couldn’t feel my hands. I told them how isolating it was to be in treatment, despite support. I let them in on what was happening mentally AND physically. I let them see how brutal it was but how beautiful it was at the same time. I let them laugh with me and cry with me. I let them celebrate with me and mourn with me.
I set the record straight on what to say and not say to a cancer patient. I couldn’t stand having people tell me, ‘If anyone could pull of bald, it’s you’ — I didn’t have a choice, I wasn’t trying for a fashion statement. When people told me about their friends who had it who were now apparently ‘fine,’ I gently let them know they probably weren’t ‘fine’ because just because you look okay on the outside doesn’t mean you aren’t dealing with the aftermath. Sometimes the trauma comes later and it’s harder than the treatment itself. And if one more person sent me a lipstick and told me to put some on and ‘handle it,’ I was going to lose it. Lipstick wasn’t going to handle anything— and neither was the weird kale diet that was recommended.
I was a voice for those who didn’t know how to speak up or didn’t have the courage. I knew if I was 33 and I was sick, there were a whole lot of people watching who were going to be touched by cancer in their lives. Whether it was them or someone they knew. So I may as well help. I also took it upon myself to keep LIVING during treatment. I still taught my classes, I still showed up every day that I wasn’t on the bathroom floor dry heaving from side effects.
I was bald, I had no eyelashes, I had blisters and bruises, but I had FUN. I was present. I was a mother, a wife, a friend, and I was going to beat this thing with a smile on. And let me tell you, having your ass kicked in a spin class by a girl going through treatment is a sure way to get people to work hard. I had my days, many of them, of wondering if I’d make it out of treatment alive. I had my days of feeling like my skin was on fire and the world was moving on without me. But I also had faith that this would serve a purpose. I chose not to let fear define my experience.
I smiled when they wheeled me in for my double mastectomy and I fist bumped the anesthesiologist when I woke up. I was traumatized at what I saw and reminded myself I am not my body. I am my soul. And my soul was ALIVE. I compared it to a tree losing its leaves in the fall. Losing all of the things that made it externally beautiful. Watching it be cold and bare, wondering if it would survive the winter. I felt the metaphor so deeply resonate with where I was. I would come back different, but beautiful all the same.
They called me 11 days later and told me my pathology came back clear! I was cancer free! I was bawling and shaking. My wife was at work and my kids were at school. I was alone hearing this news and it quickly reminded me how alone I had truly been in my experience. Nobody really knows unless it’s happening to them. And although my wife was beside me every step of the way, even she truly didn’t know what any of it felt like, just as I didn’t know how it was for her. I was relieved and grateful and I swear the world turned to technicolor after that moment. I had so much hope. I immediately shared a teary, trembly video of the news and went on a very slow walk to soak it all in and thank the universe.
I continued to share the aftermath on social media and the response was immeasurable. I had never heard anyone speak so openly about life after cancer. Everyone just assumes you are fine since you are clear, but I truly believe the year(s) after were harder. It’s the things you can’t see. The mental is so much harder than the physical for some.
I had read a few books about breast cancer and having gone through it, really felt like they didn’t do the experience justice. I went on to publish my best-selling memoir Please, Don’t Send Me Flowers and continue to get messages from how grateful people are to have an open and honest account of what it is truly like to be a cancer patient and what we truly need from the people around us.
I am now 3 years cancer free and while I have a pretty high risk of recurrence, I have chosen not to let fear creep in. If I’m not here for a long time, I want to be here for a good time— I want to feel ALIVE. And alive to me is a big ass spirit and big ass dreams, no fear included.”
This story was submitted to Love What Matters by Lianne Saffer of Portland, OR. You can follow her journey on Instagram and Facebook. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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