Don’t Ignore Stage IV: Advocating For Metastatic Cancer
National Young Adult Cancer Awareness Week is an annual, community-driven opportunity to highlight the needs, issues and challenges of young adults diagnosed with cancer between the ages of 15–39 and to spread the word about the amazing work being done by patient advocates and healthcare champions on their behalf. This blog series serves to raise the profile of the issues and make it as easy as possible for supporters to add their voices to the Critical Mass community.
By Beth Fairchild, Metastatic Breast Cancer Survivor
My name is Beth Fairchild. In my former life, I was an artist, mother, wife, daughter and friend. Now, while I may still be all of these, I have added fearless fighter and breast cancer advocate to the list of things that make me, me. This is my new, cancer life.
Eleven months ago my life was pretty normal. My husband and I were successful business owners. We were raising our daughter and preparing to adopt another. I was happy in my personal life, my career, I worked out daily and ate healthily, then, there it was: cancer.
After months of complaining of intestinal discomfort and lack of energy, it was discovered that my ovaries were the size of grapefruits and in danger of rupture. They had to come out and, because I had a family history (my mom was diagnosed with breast cancer at 44 and my paternal grandmother was dead and buried at 33), I decided on a total hysterectomy. My surgery was Monday, May 12, the day after Mother’s Day. Tissue samples were sent off to pathology, and two days later, on May 14, I was told that I had breast cancer.
No one ever wants to hear the “C” word. Ever. But I was diagnosed with Stage IV Lobular Carcinoma with metastases to the ovaries, fallopian tubes, uterus, cervix, the top portion of my vagina, the omentum and in the fluid surrounding all of these things. While I’m no doctor, I knew Stage IV wasn’t good. In fact, it’s real bad. I was told that there were treatments available, but no cure. I was told that even with treatments, someone like me, statistically speaking, would live two years — maybe more, maybe less. If that’s correct, I have about 13 months of life left to live.
After my diagnosis, I came home to die. I was in agony from the pain of surgery and my head was spinning. I couldn’t see past that moment in time. But it got better. Every. Day. My body healed. I got stronger. I endured 18 weeks of chemo and SURVIVED! I was a 34 year old, post-menopausal, bald-headed, terminal cancer patient, but I was alive, damn it! I was alive and LIVING and I set out to take back control of my life.
I’m a driven woman. I am motivated by purpose. If I have a goal to work towards, I can dig deep and find success. My children were my first motivation. I saw the hurt and fear in their eyes. Mommy couldn’t assure them that things would be ok, but I could show them that Mommy wasn’t going to give up. I talked candidly with them about my condition and treatment. I got up every morning and took them to school. Even the days I didn’t feel like it, I got up. I was a mom first, and they kept me going.
My job kept me going. I’m an artist. I make tattoos. My husband and I have five studios and I have made my career in the tattoo industry. My specialty is permanent cosmetics and areola restoration for breast cancer patients. Ironic, huh? But on the days I had to see my breast cancer clients, I knew what the procedure meant to them, so I would leave chemo and go straight to the studio and help a woman feel whole again. That was like therapy to me.
Then, I found support groups. I wanted to talk to and be with other women like me. There were several groups available in my town; however, when I went, I was the youngest person there by at least 20 or 30 years. Now, don’t get me wrong, I am in no way minimizing the severity of cancer in older patients, but it was hard to hear those people speak about not seeing their grandkids grow into adults when I felt like I wouldn’t even see my daughter graduate from high school.
Then someone I had met briefly through work reached out to me on Facebook and said that she had undergone treatment for breast cancer. She asked me if she could add me to her online support group called Young Survival Coalition. It was for women in all stages of breast cancer, but everyone there had been 40 years old or younger at diagnosis. From there, I found a Metastatic 40-and-under group and breathed a sigh of relief. They GOT me!
When I was diagnosed with Stage IV breast cancer, I was in the prime of my life. My marriage was grand, my kids were amazing, my career was soaring and things couldn’t have been better. Then this. Cancer is a daily struggle. Not to say cancer is easy at any season of life, but this under-40 demographic have to not only juggle surgeries and treatments, but oftentimes careers, new marriages, or maybe they’re dating. Many have young kids already, but some young women will never experience childbirth because their ovaries are suppressed from hormonal treatments or, like me, have had them removed in order to slow the cancer’s progress.
Realizing the sacrifices these ladies, as well as myself, had made, the lack of awareness about metastatic cancer was disturbing. I thought my condition was rare but, turns out, not so much. There are more than 300 of us (and counting) in our little online community, and thousands more, across America and the rest of the world. Thousands of other women just like me. I have grown to love these women, and through shared stories and photos, their families and loved ones. I had to do something. Advocacy, yet another reason to move forward and another way to show my girls that you can push on, even against all odds.
Through local events and online social media, I have spread the under-reported message of metastatic breast cancer (MBC). I started the hashtag #dontignorestageiv (metavivor.org) and an advocacy movement on Facebook called Stomp Out BC (breast cancer). On March 2 of this year, I, along with many of the women in our support group, took over Facebook and had #dontignorestageiv trending in the number 2 spot nearly the entire day. I will continue to do this on the first Monday of each month and work alongside other advocacy groups to bring attention to MBC until my dying breath.
No one can say for sure when my time will be up, or even for certain that this thief of life we call cancer will be the cause but, short of a miracle — and I do still believe in miracles — I will die with this cancer in my body. But that does not mean that the cancer will have won. I will NOT allow cancer to beat me, because even in my death, there will be life…and hope.
The legacy I leave behind will live on, in the way I live now, the life lessons I teach my children, my advocacy work, the words I share here and in other forums and groups. If I can enlighten another who is uneducated about breast cancer or be of service to someone in need, or maybe my story will move someone to see a doctor or to have a scan or mammogram, if I can help save just one person, then I will have served a greater good.
Beth Fairchild is a wife, mother and superhero metastatic breast cancer advocate. Her online community-building efforts have helped bring together countless young adults who are sharing their voice with #dontignorestageiv. You can find her on twitter at @bethfairchildnc.
Originally published at criticalmass.org on April 8, 2015.
