Stories From Wildfire: Write Your Own Story
I was initially diagnosed with breast cancer in December 2011, at the age of 30. I was Stage IIb and, after a year of treatment – which included chemotherapy, single mastectomy, reconstruction, and radiation – I was deemed cancer-free. My husband and I went to Hawaii to celebrate. We were looking forward to our lives returning to “normal.” While I went through treatment, I had been fighting for a sense of normalcy.
My job was at Walt Disney Motion Pictures in Los Angeles and I literally walked across the street to the Disney Family Cancer Center for treatment. I did not seek out a support group; everyone and their mother wanted to introduce me to someone they knew who had breast cancer. I had zero interest. I even received a promotion at work. All I wanted was to get through treatment, take my Tamoxifen for a couple of years, and then get off of it to start a family.
However, after I had been declared cancer-free, my breast surgery site became infected and I found myself in the chemo infusion room to have a dose of intravenous antibiotics. I had complete PTSD walking into that room. A wave washed over me; I felt that if I didn’t completely change my life, I was going to die, so I pressed the eject button. I quit my job, I moved back East with the intention of being bi-coastal. I made decisions that, in retrospect, were completely reactionary and rash. Barely a month into my move back east, I started experiencing excruciating headaches and a brain MRI showed I had a big tumor and a lot of swelling. I was told I was lucky as hell that I hadn’t had a stroke. I had a craniotomy. Right before the surgery, my breast infection flared up again so they had to remove the breast reconstruction in the same surgery. I woke up with my head wrapped like a Japanese strawberry and my chest half flat.
I’d like to tell you that I was strong, that I met this next chapter with strength and grit, but I did nothing of the sort. I crumpled and I needed help. In screenwriting we call this moment “the lowest of the low.” Thankfully, I found my way to a therapist at Sloan Kettering who specializes in young people with cancer. I was 30 at initial diagnosis, 31 when the cancer metastasized. I was young and, though the statistics that I Googled looked bleak, I had a future ahead of me gosh darn it!
While in New York I also discovered the non-profit SHARE. A fellow survivor, Katrina Cooke, had just started a new phone support group for young MBC survivors. I dialed into the first call and found my first young mets tribe. I didn’t realize how much I’d needed the support until after I hung up the phone from that first call and cried tears of joy. I wasn’t alone! We spoke the same language! We related to dealing with our spouses, mothers, and friends. Some of the women had children and sympathized with my longing for motherhood.
A year later, in 2014, my husband and I decided to pursue building a family. It was simultaneously one of the easiest and toughest decisions we’ve ever made. Easiest because being a mother was the only thing I ever wanted with absolute certainty and my husband was the last Russo; he definitely wanted to continue his family line! It was the hardest because of the reality of MBC and, frankly, the statistics: those diagnosed have a median 3 years of survival; 22% live 5 years post metastasis; almost all deaths from breast cancer are due to MBC. Fully aware of the likelihood that my husband may end up being a single father, we decided to have a baby. My mets sisters supported me in my decision and were always eager to hear my monthly updates.
My oncologists did not want me to carry a child. I’m estrogen positive and they feared the estrogen and progesterone levels needed to carry a child could cause a recurrence and they didn’t want me to be off my medication for more than nine months. I needed a surrogate. This is when I decided to pick up a camera and film the journey. It was another impulsive wave, a feeling that THIS was the film I was put in this world to create. THIS is why I had gotten my MFA at the University of Southern California, THIS is why I’d tried to claw my way up the ladder of the entertainment industry.
I had no idea what the film would be yet, I just knew I had to film. For a year, I simply filmed my doctor’s appointments, scans, family events, and video diary entries. We had some scares in 2014 that prevented us from moving forward with family building but then, in 2015, my husband lost his only sibling, his sister, to a freak accident and we realized there was no time like the present; we signed a contract with The Agency for Surrogacy Solutions. The baby-making process had its own challenges. We couldn’t use my eggs; we found an egg donor through Genesis Egg Donation Agency. We lost embryos. All the while, I had brain scans every three months.
In November 2016 I finally became a mother to a beautiful baby boy. Throughout the journey, I jumped on the monthly mets phone calls sporadically but whenever I did I was met with cheerleaders.
In August 2017 I had my first weekend away from my son. One of the women in our phone support group spearheaded a weekend at Mary’s Place By the Sea, a respite home for women who are receiving cancer treatment in Ocean Grove, NJ. One by one, the women whom I had talked on the phone with for over four years converged from New Jersey to Colorado and North Carolina, and myself from Los Angeles, to meet for the very first time.
The first night we went out to dinner and it was like I’d known these women my entire life. I had also made this trek to the east coast to attend the annual LBBC Metastatic Conference in Philadelphia and get some editing done with our New York-based film editor, Jake Diamond. When the women found out we had edited a first cut of the film together they begged to go back to the house and watch it. I was excited to get feedback, especially from women in the metastatic breast cancer community, but I was incredibly nervous. Did they think it walked the fine line between raising awareness for the severity of disease and my eternal optimism? We put on our pajamas, pressed play, and I sat in the back of the room, hugging my legs, my heart beating a mile a minute. The House Mother for the night was a nun and she watched the film with us. I’m not sure how much she knew about MBC but every so often she’d shout out, “I have a feeling a miracle is going to happen!”
I held my breath when the credits rolled, unsure of how everyone would respond. There wasn’t a dry eye and everyone was hugging everyone. We stayed up for hours afterwards talking. The House Mother was supposed to lead a discussion the next day about Hope but after watching the film she decided to pivot. Instead we had a thoughtful conversation about building legacy.
Every human being on this Earth leaves behind a legacy, a footprint, a mark on our world. I like to call this our Story. We all write our own stories to leave behind. There is a difference between letting someone or something write your story for you and taking whatever control you can muster and writing your own. We were a group of young women who, while faced with metastatic breast cancer, were choosing to live our lives, write our own stories, and were there to lend each other support along the way.
My son, Grayson Matthew, is turning 2 in November 2018 and the documentary film, which I like to call our “second child,” Love Always, Mom premiered at the Bentonville Film Festival in May and won the Audience Award for Best Documentary.
Tricia Russo. Diagnosed at 30. DCIS, Stage IIb, ER+. Diagnosed at 31. Stage IV. Tricia was initially diagnosed Stage 2B at the age of 30 and, after a year of treatment, found it had spread to her brain. She has been living with MBC since 2013 and has been NED for 5 years. Tricia previously worked in development for Walt Disney Motion Pictures, Miramax, and Michael Mailer Films. Little did she know that her own life would become fodder for her storytelling. Tricia founded The Cyan Gray Hope Foundation, a non-profit focusing on creating content to raise awareness, and ultimately funding for research, for MBC and infertility. ‘LOVE ALWAYS, MOM’ is their first project and is currently screening on the film festival circuit after winning the Audience Award at their world premiere screening at the Bentonville Film Festival.
Tricia served as a ‘Hear My Voice Volunteer’ for Living Beyond Breast Cancer in 2017 and runs a support group for young MBC survivors in Los Angeles. She resides in Los Angeles with her husband, screenwriter Greg Russo, and their son, Grayson. She loves taking her son on adventures, whether around Los Angeles, across the country to visit family in her home-state of New Jersey, or to film festivals and cancer conferences far and wide. @triciarusso
Editor’s Note: You can find more about Love Always, Mom on Facebook and Instagram at @lovealwaysmomthemovie. A newsletter is available at cyangray.org. This piece has been republished with permission from WILDFIRE Magazine, the annual “MBC: Young & Stage IV” issue (Vol 3, No 4, Copyright (c) Oct 2018 by Wildfire Community LLC). More information available at wildfirecommunity.org.
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WILDFIRE Magazine is the only magazine for young women survivors and fighters of breast cancer under 45 years old. Headquartered in Santa Cruz, California, WILDFIRE is a beautiful, story-based bi-monthly magazine published on different themes relevant to young women survivors, from stage 0 to stage IV. Beautiful and ad-free! Visit wildfirecommunity.org for more info.