In January of 2020, I was in the middle of a meeting at work when a phone call came that shifted the axis of my world. I had been diagnosed with breast cancer. About a month earlier, my boyfriend, Michael, had found a lump in my breast. At my mammogram, I alerted the technician about it and she took specific images of the area. This led to a biopsy, which led to an MRI that showed a clearer picture – and a second tumor.
I was terrified, but I didn’t let my terror make me freeze – I jumped into action. After calling Michael, I called my OB-GYN, who was out of town that week. I learned they only refer to one surgeon. I also spoke with a number of friends who had already gone through a breast cancer diagnosis, surgery, and treatment. Three of them recommended the same surgeon, so I scheduled a second opinion with her.
The first surgeon strongly advised a bilateral mastectomy (removal of both breasts) with implant reconstruction. I have allergies and sensitivities to many things and knew my body would not do well with implants. A couple of weeks later, we met with the second surgeon and her team. We were presented with options and asked about quality-of-life scenarios to determine a plan of action. She also explained possible treatment options and made it clear that things could change once we had the pathology report after surgery. I said I wanted her to be my surgeon, then I was assigned medical and radiology oncologists. When I was asked if those physicians were okay, my reply was I just wanted the best people for the job. In hindsight, I got them!
I had a partial mastectomy, which removes more tissue than a lumpectomy but leaves most of the breast intact. This was on March 10, 2020, a few days before the COVID shutdown and it was the last time Michael was able to be with me for an appointment. Unfortunately, we did not get clean margins, meaning cancer was found at the edges of the tissue that was removed. I had been told this was a possibility; a re-excision surgery would be needed. But the second surgery was somehow considered elective and I was not able to schedule it. I met with my medical oncologist by Zoom to discuss my options for moving forward during his time of uncertainty. We decided that I would start taking an aromatase inhibitor along with a Lupron injection. This combination would suppress the estrogen that had been feeding my tumors.
On May 4, I learned that the hospital was opening to elective surgeries again and I called my surgeon’s office. Two days later, I had my re-excision, and this time we got clean margins. This surgery was different, though. Michael dropped me off at an abandoned-looking hospital at 5 AM. The lobby and hallways were eerily empty. Luckily, I didn’t have to wait long once I signed in, completed the paperwork, changed, and got in the bed. The procedure was over before I knew it. Healing the first time seemed like a breeze. After the second surgery, I lived in a snug sports bra for a few months before the soreness went away.
As my surgeon had suggested, my post-surgery pathology report led my medical oncologist to recommend chemotherapy. In preparation, I stopped taking the aromatase inhibitor while continuing Lupron injections to protect my reproductive system. Chemo took place from June through August. Afterward, I had a break before beginning radiation, which went from early September to early October. Around six or eight weeks after radiation ended, I went back on the aromatase inhibitor.
Through my surgery and treatment, many people – my doctors, their nursing staffs, infusion nurses, and more – handed me brochures for the Coalition. However, a number of my friends had already gone through breast cancer surgery and treatment, and I already had a great support system. But as supportive and caring as they were, none of them had gone through the same scenario as me. By the time I finally made the call to the Coalition, I was in the midst of chemo and planning for radiation. A radiology nurse asked if I had called the Coalition yet. When I said “No,” she asked if more support was a bad thing. “No, no,” I laughed. “It’s the exact opposite!”
After speaking with the Coalition staff, I signed up for a few of the Healing Arts classes. I took Gentle Yoga, Mindfulness & Meditation, and a Voices & Vision Writing Workshop. That’s also when I inquired about the PALS program and was matched with Katherine, a peer mentor whose diagnosis and treatment were similar. And I attended some Evening Educational Webinars and a virtual Young Survivor Gathering. Once my radiation treatments ended and I resumed the aromatase inhibitor, I joined the class on Surviving & Thriving on Aromatase Inhibitors.
Going through cancer treatment during the pandemic was a double-edged sword. I felt isolated most of the time even though friends would come over and sit outside with me or check in by Zoom. The way that the Coalition dropped materials off at my house for classes and events and converted everything else to Zoom helped immensely by making connections that eased my recovery process.
In 2022, I spoke with Holly, the Director, about my desire to become more involved with the Coalition. Soon, I joined the first group of Emerging Leaders, a new initiative of the Coalition. I had been wanting to somehow make a difference, and this was the perfect opportunity to make my pain my purpose, as the saying goes. After being paired with a mentor who is an experienced member of the Advocacy Committee and attending training sessions, I had an eye-opening experience in May of 2022. I attended the Advocate Leadership Summit in Washington, D.C..
After that, joining the Advocacy Committee seemed like the next logical step. I want my voice to be heard on issues that matter to survivors. And if I can make a difference in getting rid of even some of the chemicals in the environment that may have contributed to my cancer, that would be a win. Far too many people are still being diagnosed. We have a lot of work to do. I’m happy to have this Coalition crew to work with!
My hope is to represent the Coalition as an advocate for their services and the causes this organization champions. I also want to continue to foster the relationships I’ve built and create new relationships with young survivors who want to get involved. It’s a different kind of connection when you’ve gone through similar experiences – physical and emotional. We also fight for those who can’t and give a voice to those who no longer have one. I’ve lost friends to breast, lung, and other cancers. I want do whatever I can to stop this from happening.
I’ve always been a private person and someone who doesn’t like to ask for help. That has all changed. Through my involvement with the Coalition, I’ve learned the importance of community and leaning on others for support; the importance of ‘making my mess my message.’ And doing so has also opened up discussions I never thought I’d have. Sharing my story – the good, bad, and ugly – has encouraged others to get to know their bodies and to be their own advocates. I’m happy people feel comfortable coming to me with their questions.
The relationships I’ve developed at the Coalition have brought me so much joy. I never had the patience for nonsense, and now more than ever, I try not to focus on negative noise. I want to enjoy every day and focus on the people, things, and activities that make me happy. I like giving back. It feels good to help those who helped me, and to make sure that people who are newly diagnosed have the support and information they need for the best possible outcome one can have in this situation. Even when you think you have plenty of support, you’d be surprised at how much you need.
One of the first questions I ask when I hear that someone has been diagnosed is: “Have you reached out to the Coalition?” I share my story and caution others not to wait like I did. But regardless of when you call the Coalition, it’s never too late for anyone to join us.
October 2024
