Treating The Whole Patient: A Two-Time Cancer Survivor’s Story Of Hope
May 21, 2021
Renee Firato’s 18-year journey with cancer is a powerful story of resilience, survival and light in the face of disheartening odds.
Diagnosed with acute myeloid leukemia (AML) at 18, Renee beat the odds thanks to a bone marrow transplant from her sister. Against all expectations, she became a mother to daughter, Ava. And then at 36, she faced metastatic breast cancer. Today, Renee is keeping her breast cancer at bay, juggling a new kind of normal amidst the pandemic, and finding a healing connection with other cancer survivors.
Renee’s experiences as a two-time cancer survivor draw attention to the need to treat the whole patient: not just the physical disease, but its financial, emotional and mental tolls as well.
Syros CEO Nancy Simonian sat down with Renee to hear her story of hope.
Nancy Simonian: Tell me about how AML and its aftermath affected you personally.
Renee Firato: I was terrified by the diagnosis, but I was ready to fight. I had four rounds of chemotherapy, full-body and targeted radiation, and a bone marrow transplant. Then I spent one year in total isolation. That’s when I was introduced to the 3N209 mask, which is a hot commodity now but was pretty obscure then.
The doctors told me I might develop a second malignancy later and that I was unlikely to have children – which was devastating, because I had always dreamed of being a mother.
After AML, I struggled on many levels: personally, financially, physically and emotionally. I followed all my protocols and stayed healthy. But I lived with the fear of cancer recurring and the anxiety of infertility.
Then in early 2013, I visited my doctor because I had severe abdominal pain. I worried that the cancer had come back. But it turned out that I was pregnant! At that point, nothing else mattered. I had been ready to be a mother for as long as I could remember. My daughter was born that September.
NS: When Ava was five, you were diagnosed with metastatic breast cancer.
RF: Yes, in March 2019. From my experiences with AML, I knew I had to carefully coordinate all of the details of my life, especially now that I was a single mother. I paired Ava’s childcare and play dates with my appointments for chemotherapy and targeted radiation, a total lymph node resection and a unilateral mastectomy.
I was recovering from my grueling treatments and getting ready to go back to my teaching job when COVID-19 struck with a slap. My care team advised against returning to work because of my immunocompromised status. But that meant I lost the only income I had to support myself and Ava.
That’s when I found Family Reach, a non-profit organization that provides financial support to families facing cancer. I applied for their COVID relief fund. We reviewed my situation and they helped me establish a financial plan.
NS: Has the pandemic interfered with your breast cancer treatment?
RF: I’m on long-term low-dose chemotherapy and a hormone control treatment plan for my metastatic cancer and receive monthly injections in addition to daily medication. Because of hospital lockdowns, I couldn’t go for follow-up care and bring Ava along. That meant arranging childcare, which wasn’t always possible, so I had to transfer to a facility where I could bring her. I also found ways of coping with the smaller problems at home and just addressing the bigger issues in the hospital or doctor’s office. I have also delayed having a preventative mastectomy on my remaining breast in part because of the pandemic.
NS: One consequence of COVID-19 is that cancer patients aren’t seeking or sticking with their treatment regimens. Has that been part of your experience?
RF: Yes. In August, we discovered I had a mass on my thyroid. At first, I didn’t want to deal with it. My hospital was in a part of San Francisco with a high rate of COVID-19 cases, and I was afraid of exposure. My care team had to work hard to convince me to address the thyroid mass now, before it progressed to something worse, and that I’d be safe going into the hospital.
But for the first time in 19 years, I’ve lagged on getting my routine blood work because I’m afraid of exposure just waiting in line at the lab. I know other patients also feel that anxiety. Not enough people recognize that some of us have sensitive immune systems.
NS: How does isolation as a breast cancer patient during the pandemic compare with your isolation after the bone marrow transplant for AML?
RF: It’s so much easier now! Back then, social media and online shopping didn’t exist. I shopped by communicating via walkie-talkie with my personal shopper who was in the store while I waited in my car. Online services are so much better now.
COVID-19 suddenly made wearing the 3N209 mask the thing to do. Having cancer right now is kind of a benefit because I just blend in – with my mask, and my need to escape from isolation.
The pandemic also made us all more interested in our health, staying connected and cherishing the details of our lives. It made it OK to ask other people for help. It made us realize how much we need each other.
NS: On that note, tell me about your connections with other patients and organizations.
RF: After my AML diagnosis, I searched for years for anyone with experiences like mine. But the survivors I found were all much older than me, and there were no platforms or organizations for connecting with other patients. For a long time, I blocked out my leukemia.
That’s why it was so wonderful last year to speak with the Family Reach representative, and not just about my finances. Family Reach encouraged me to connect with other survivors on social media. This opened a door to a healing I didn’t know I needed. Now I’m in a breast cancer support group on Facebook and Instagram, and it’s been monumental in my healing. It’s given me the opportunity to be an advocate and a voice for survivors.
It gives me hope, too, because this is some heavy and scary stuff. But we humans can be stubborn about life. And it’s sweet that we can connect in a natural way and share this bond through the chaos. Some good things can actually come from it.
That’s why it’s important to treat the whole patient, not just the disease. I think we all understand this now, because COVID-19 has the whole world cleansing, healing, helping and supporting. I already feel the light that it’s bringing, and I focus on that light.