The Four Stages of My Stage Four MBC
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 alarmed. 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...
It was suggested that I go back to Canada
I was in the USA at the time, showing horses on the American Quarter Horse show circuit. I went to a walk-in clinic there, and the doctor I saw suggested I return to Canada and have my doctors check me out. 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 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.
So many questions
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.
So many emotions
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, 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. Cards, letters, and gifts started arriving in my mailbox.
Wonder Woman and the Amazons
In 2016, after I completed 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 wanted to give back to the Canadian Cancer Society, which 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.
A fighting spirit
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. 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, and 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 and new ones that kept popping up. The treatment was easy and painless but very fatiguing. The steroids prescribed to prevent the swelling in my brain wreaked havoc with my sleep. And the tumours in my brain wreaked havoc with everything else.
Spreading a message of hope
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. 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.
A different version of myself
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. 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. I have bone Mets, have had Mets on my ovary, and have problems with my lungs. Sometimes I have trouble finding my words and speaking. I am not the Grandma I pictured myself to be. A “fun” Grandma. One full of energy, life, laughter, and activity is always up for a new adventure—one who can play sports and ride horses with my grandson.
Being present for milestone after milestone
That is not who I am now. But I’m so grateful to be here and watch him grow up, as well as see many other milestones be reached. My daughter graduated from College in 2020, with Honours, as a Continuing Care Assistant in 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, pine cones, and all the beauty of nature.
My 4 stages of MBC
I realized after being diagnosed with Stage 4 MBC, that there are 4 stages that I’ve had to go through.
Our cancers are as unique as our DNA, and our lights shine on
And I continue to spread my message of hope and inspiration, with truth and understanding that everyone follows their own paths and journeys. It’s all unique and individual. As unique as our DNA. No two cancers are the same. No two humans are the same. Sometimes, it can be a lonely road with so much uncertainty and 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 peoples unlit candles and share the flame? Pass the light on.
Do you think nutrition impacts your symptoms? 🍲