By Leanne Pierce Schneider
One night in July 2015, I went to sleep, and everything was fine. When I woke up, it was obvious that everything was not fine. My left breast was swollen, inflamed and painful. I was shocked and worried, but tried not to overreact. Then I started making excuses. Maybe my period was coming. Maybe it was cellulitis. Maybe it was a clogged milk duct. Maybe it was. Maybe it. Maybe…
I was in the USA at the time, showing horses on the American Quarter Horse show circuit. I went to a walk-in clinic and the doctor I met with suggested I return to Canada and have my doctors investigate further. I was traveling in the USA without health insurance. Not being an alarmist, I could sense that this doctor thought it might be serious. I also started thinking back on my time spent in the USA that year. Compared to the previous years, this one was filled with an overwhelming fatigue. It was unlike anything I had ever experienced. And the random pains made riding difficult.
I returned to Canada and immediately went to the hospital. From there, everything happened very quickly. Within 10 days and after many tests, I was given the diagnosis of Stage 3 Triple Positive Invasive Lobular Carcinoma.
The bottom fell out of my stomach.
The bottom fell out of my world.
I remember wishing that the bottom would fall out of the floor and the hole would swallow me whole.
How could this happen to me? I had no family history of cancer. I lived a very healthy lifestyle, as an equestrian athlete. I tested negative for all genetic mutations.
What did I do wrong? Why did my body betray me? I was only 48 years old.
I began treatment within weeks, after initially declining all treatments. I went from being suicidal to trying to be inspirational. I looked for ways to share my experiences with others, to encourage them and be a beacon of hope. But also acknowledging that cancer is ugly, brutal and a nightmare. I acknowledged my feelings of anger, sadness, and depression.
I struggled with wanting to keep silent about my diagnosis, because I was ashamed, and I didn’t want to answer questions or see the looks of pity on people’s faces. But that went against my nature as an open book, outgoing, heart on my sleeve type of person. And then I realized how many people I was helping by sharing my story. I was getting messages from friends and complete strangers. They were telling me that I was putting into words what they could not. That I was helping them to understand what their family members and loved ones were going through. That they were learning so much about cancer, from an insider’s point of view. I used social media, writing, and face to face conversation as a way to communicate my experiences. Cards, letters, and gifts started arriving in my mailbox.
In 2016, after my completion of brutal chemotherapy and a mastectomy, that left me with lymphedema and PTSD, I entered a team, Wonder Woman and the Amazons, in our local Relay For Life. I gave my team this name because people started referring to me as Wonder Woman. And I entered the Relay because I wanted to give back to the Canadian Cancer Society, who had done so much for me and others in this province. And then I was asked to be a guest Speaker at that event. I was humbled, honoured and thrilled.
The following year, I entered my team again. This time I was invited to be the Ambassador for the event. During these events, I was labelled as a “survivor” because I had been declared cancer Free on March 1, 2016.
Then on April 4, 2018, I had a massive seizure alone in my kitchen. After it was over, I managed to call 911 and an ambulance came and took me to the hospital. The doctors performed a CT scan. The cancer had returned and metastasized to my brain. My daughter, who was sitting by my side, burst into tears. I let a few tears roll down my cheeks. But the sound of her crying and the thoughts of my new infant grandson, put me in a fighting spirit. I would prepare to face this challenge with determination, strength, focus, humour, honesty… while remaining true to my original goal of helping others.
That year, I was unable to enter my team at the Relay For Life. I was undergoing radiation treatment on my brain for the current tumours, as well as for new ones that kept popping up. The treatment was easy and painless, but very fatiguing. The steroids prescribed to prevent the swelling of my brain wreaked havoc with my sleep. And the tumours in my brain wreaked havoc with everything else.
Also, in February of that year, my mother was diagnosed with Stage 3 lung cancer. She died on July 4, 2018. This was devastating to our family. But after months of counseling, it made me more determined than ever.
Even though I was now considered terminal, I still wanted to spread my message of hope.
My prognosis was 2-3 years. I was told to get my affairs in order and to start checking things off my bucket list. I am happy to say that I am now entering year 5. New drugs and treatments become available all the time. I have been on many. Some of them have been easy. Some of them have been absolutely intolerable.
In 2019, I again entered my team in the Relay For Life, although in a much limited capacity. And without my mother, who had been an integral part of my team. I had to sit down often. I had to rest often. I had to leave earlier than I usually did. But I participated. I showed up.
I am still here, living my life. Although I am a different version of myself. The seizures and drugs have left me with mobility issues. I have to use a cane or walker or wheelchair. I fall often. I am frequently tired and weak. I have edema in my feet, ankles, and legs. I have had fluid around my lungs and in my abdomen. Some of my fingernails have fallen off. I have “Chemo Belly”. I have Cushing’s Syndrome from long term steroid use. I have gained over 100 pounds from the steroids and all of the drugs I’m on. As well as the lack of activity from the fatigue, weakness, and mobility issues. I have been hospitalized for a week with cellulitis and have had two more bouts with it. I have had blood clots in both arms and both lungs. I have bone mets in my spine, ribs, leg and hip. I have had mets on my ovary. I sometimes have problems breathing. I have trouble finding my words and speaking. I am not the Grandma I pictured myself to be. A “fun” Grandma. One who is full of energy, life, laughter, activity, always up for a new adventure. One who is able to play sports and ride horses with my grandson.
That is not who I am now. But I’m so grateful to be here and watch him grow up, as well as seeing many other milestones be reached. My daughter graduated from college in 2020, with Honours, as a Continuing Care Assistant in the field of health care. I was here to celebrate that huge achievement with her. She got married last autumn. I was here to attend and help with the wedding and walk her down the aisle. I was here to see my grandson board the bus for his first day of school. And sit with my daughter on her front porch, waiting for him to get home, eager to hear all about his first day. We can’t play sports, but we can play cards and board games. I was here to witness his very first time on ice skates and playing hockey. And I was able to attend every one of his soccer practices and games with our local Tim Bits. We can’t run around the park, but I can push him on the swings. And he can push me in my wheelchair. We can’t go for our usual 4km walks on the walking trails, but we can go for short walks on the nature trails and look at ducks, frogs, butterflies, bugs, mosses, lichens, pinecones and all the beauty of nature.
I realized after being diagnosed with Stage 4 MBC, that there are 4 stages that I’ve had to go through.
Acknowledgement
Acceptance
Adjustment
Adaptation
And I continue to spread my message of hope and inspiration, with truth and understanding that everyone follows their own paths, their own journeys. It’s all unique and individual. As unique as our DNA. No two cancers are the same. No two humans are the same. It can be a lonely road sometimes, with so much uncertainty, so many dark corners filled with fear. Then someone can show up out of nowhere and switch the light on or light a candle. The light might only last for an hour. Or it could last for days. You know how at certain events where people hold lit candles to other people’s unlit candles and share the flame? Pass the light on.
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