Mom, realist, fighter
ABOUT LINDA, IN HER OWN WORDS:
- I’m an administrative assistant who works two jobs, one at the volunteer fire department and one at a medical imaging center.
- When I was 48, I found a lump in my breast. When my body failed to recover from surgery, they found that the cancer had metastasized to my bones.
- I started to ask my doctor questions. I went from being my doctor’s subject to working with her in partnership.
- My oncologist now calls me “sassy.” I like that much better than the labels of passive, quiet, and compliant.
About My Journey
I am a mom, a daughter, a sister, an aunt, a cousin, a friend. I’m an administrative assistant who works two jobs, one at the volunteer fire department and one at a medical imaging center. I have been told that I have a big heart. And I have metastatic breast cancer.
When I was a child and a young adult I spent a lot of time with my grandmother. Grandma was wonderful. She was the person in my life who truly made me feel loved. Until one day, when I was a young adult, she died. I went to see her body before the funeral home came and took her away. The moment I saw her will remain forever etched in my mind. That was not my grandmother. From that moment on death was a terrifying thought for me. My greatest fear.
Years passed. I met an amazing man. He made me laugh and pointed out the silver lining in all situations. I felt peaceful, loved, protected. Our family was a happy one with two children who were loved dearly by two parents who loved and respected each other, as well. That was the life I’d built for myself, and that’s what got wrecked when cancer appeared on the scene.
When I was 48 years old, one morning I woke up and found a lump in my breast. So I went to see my doctor. When she said it was “ductal carcinoma in situ,” I thought that meant it was just another cyst; I had had those in the past. With no cancer in my family, I didn’t know the terminology. Then she said, “I’m sorry.”
For treatment, I had whatever tests and surgeries I was told I needed and took whatever medication I was given. My husband, my mother, and my oncologist talked together about my treatment, and I complied. I got through chemo, radiation, a mastectomy, and breast reconstruction. Throughout, I remained passive, not joining any support groups or doing any of my own research. I didn’t want to get sucked into workshops; I didn’t want to give cancer more space in my life. I was ready to go into remission and move on.
But that point never came. When my body failed to recover from the surgery, my oncologist sent me for testing that the cancer had metastasized to my bones. I had a whole new list of terms to learn. New medications, new scans, new tests. I was devastated and felt like the death sentence I had just dodged came back to hunt me down.
I now had a terminal diagnosis and felt an intense sense of betrayal. I had followed all the prescriptions and recommendations and done what my doctor, my husband, and my mother told me to do. Not that I could blame anyone, but I did feel let down. I was scared of what was to come and I felt angry. Something needed to change. I needed to get more involved in my own life. I went to a cancer retreat, looking for answers, but in my state of anger I was still not prepared to hear people’s stories or to understand their perspectives.
Beginning To Unravel
Piece by piece, the happy lives my husband and I had claimed for ourselves fell apart. I had been the glue in the middle that held everything together. The intense medical treatment and the fear of death washed that glue away. My husband started to become very self-focused. He couldn’t be around me when I was sick or in the hospital. But what I really needed was my best friend and life partner. He must have felt helpless and scared. And so was I. Where we were different was that I could not sit around and mope about my lost dreams for the future. I became empowered by researching my cancer and talking to other people who had cancer and their families. He on the other hand found ways to not be around. He stayed late at work, made plans with friends, and isolated himself. We’ve become legally separated, staying friends to this day, just no longer partners for life.
What now? Should I go back and start dating? This disease is a hard sell, on the dating scene as well as at work. At my day job, everyone is very supportive of me, but at my night job, which is ironically at a healthcare facility, I’m careful about keeping my secret. The most support I get is from my best friend and my cousin. They will listen for a little bit and then demand that I think in options, not in roadblocks. That’s valuable.
Taking A Stand
Realizing that only I could make a real difference in my life, I started to ask my doctor questions. I started to discuss treatment options. I went from being my doctor’s subject to working with her in partnership. And I learned that my life can have a lot more in store than just waiting for the end to finally come. I no longer fight against the truths that come with metastatic breast cancer, but I do fight the cancer head-on. My oncologist now calls me “sassy.” I like that much better than the labels of passive, quiet, and compliant.
My doctor and I discussed how IBRANCE, together with fulvestrant, could be a choice for me, as it is a treatment for postmenopausal women with HR+/HER2- metastatic breast cancer who have had prior endocrine therapy. My oncologist recommended I try IBRANCE plus fulvestrant, and I decided to do it. I did experience some side effects, including hair loss and loose stool, so I avoided situations where I had to be away from the bathroom for an extended time. But when we looked at the big picture, my doctor and I were pleased with my treatment with IBRANCE and fulvestrant. It’s important to realize that that’s my personal experience, and yours could be different. Other people may experience serious side effects such as low white blood cell counts and fatigue. I stopped taking IBRANCE in December 2016.
Embracing A New Perspective
I have gone through a transformation and reached a point of peace with my diagnosis, while preserving who I am. If anything, my heart has only gotten bigger. I am watching my kids leave their own mark on the world and support them in finding their own happiness. I want them to remember that your life is not over after diagnosis with metastatic breast cancer.
I have an idea of what the future of my cancer journey might be, but I no longer let it define my life. I am stronger and calmer than I have ever been. I feel more joy, see more beauty, and am more sensitive to the pain and sadness in other people. I am happier and I worry less. The end is still going to come for all of us, with or without MBC. But I know now that it’s my job to make this time worthwhile.