The Long Road To Accepting My MBC Diagnosis
Photo by Alicia Thurston Photography
As a young adult living with metastatic breast cancer, people expect me to accept my diagnosis. Because I am young, people expect me to be stronger than my disease, like I can’t die yet or I’ll make it through, even though I’m considered terminal. I feel like I’m expected to go on living the lie for everyone else. Eventually, acceptance eventually did come for me, in the form of coffee with a friend. I was able to talk to her about my unanswered questions and the hard conversations no one thinks of having over coffee.
My story starts off with my early diagnosis of Stage 3 Triple Negative, BRCA1 Positive Breast Cancer. Like all patients diagnosed with cancer, I went through the array of tests. I was informed that I had a small nodule on my right lung. My oncologist told me it was nothing to be concerned about and treatment would go on as planned. I wanted to trust my oncologist’s opinion and move forward with treatment and put cancer behind me. Six rounds of chemo were ordered and as I pushed through my second round of chemo, loneliness and isolation started to creep in.
I did what most cancer patients do, tried to connect. Being a young adult with cancer had many challenges in my community in northern Ontario. The lack of support for those in my age group was astronomical. Everyone in the chemo room was at least 50 years old or older, making me stand out in the crowd rather than just another cancer patient blending in. I reached out to a friend of mine who had gotten involved with a group that focused on young adults with cancer. Through that connection I finally found a woman around my age that also had breast cancer in my community. Finally, a connection that I could relate to.
Upon meeting this young woman, I felt an instant kindred spirit. She was pleasant, outspoken, and knowledgeable in our city’s cancer community. The hard part about this connection was that this young woman had metastatic breast cancer and she was on borrowed time. She was diagnosed two years prior to our meeting and was told she would never leave the hospital. She proved to be stubborn and would not let the odds define her. She was brutally honest and spoke with me about all the hard subjects like funeral arrangements, DNR’s, obituaries and even medical assisted suicide. She had all these details planned and it seemed like it was easy for her to accept her fate.
Over the course of our relationship she gave me the most influential advice about acceptance. “We cannot control this disease or how it takes over our bodies. But we are in the driver seat of our own healthcare and accepting excuses and poor care is not within our acceptance of this disease. We must fight for answers and not just go with the flow. We have voices and they must be heard.” Even though she always found a silver lining to even the toughest of times she went through, she was always aware of what was happening to her body and why. She had her whole death mapped out and it was her who controlled when she left this earth, and so she did. Her strength made it possible for me to have hope that I would see the end of my misfortune and make it out.
Months after her passing, I wanted answers about that nodule in my lung. I took control of my body. According to my first oncologist I was cancer-free and no longer needed the cancer centre. I felt cheated and not very accepting of this answer. I had a genetic mutation that put me at higher risk for reoccurrence and three other types of cancer. I should have been monitored more closely and not just pushed aside and deemed cured. My fight for a new oncologist seemed valid to the Chief of Oncology and I was granted a new doctor that listened to all my concerns and set me on the path of multi-scans. The results…more small nodules kept popping up in my lungs and odd blood work results. Every three months was more progression of these nodules, until one of the nodules proved big enough to biopsy and then came the confirmation of metastatic breast cancer to my lungs.
It was a shock, and it hit me hard. Then I remembered my friend and all that we talked about while she was on this earth. I took control of my body and got my answers and I refused to just settle. There was calm in having the answer after months of not knowing. Acceptance did not just happen in this moment but the many reminders of my friendship with this young woman. Her strength, advice and love has helped me want to reach someone else struggling with cancer the way she reached me. The hard topics are still hard but friendship, perseverance and finding the silver lining in all situations help make acceptance possible. – Melissa Saitti
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