Mom Talk: Building Community Around Parenting With Cancer
Written by Haley Pollack
Photography by Photo courtesy of Haley Pollack
While the incidence of cancer is decreasing overall among all age groups, it’s currently on the rise among women 20-49 (a fact we just learned from today’s essay). Which means for many women, cancer is hitting them right in their parenting prime. Such was the case for Haley Pollack, an Oakland-based mother of two (Mona, 6, and Amira, 3) who co-founded the Bright Spot Network—an organization dedicated to supporting cancer-affected families with young children. Like many first-time entrepreneurs, Haley built the service she wish she had when she was diagnosed with colon cancer. Read her touching and inspiring story below.
When I was 37 years old, my life changed forever. Six months after my second child was born, I got diagnosed with stage IIIc colon cancer.
It was easy to miss the symptoms when they emerged two and a half years ago. I was tired all the time. But that didn’t seem out of the ordinary considering that my body was still recovering from childbirth. I was parenting my 3-year-old, nursing my 6-month-old, and returning to work. I was juggling a lot: pumping milk in my car or in rooms with no locks (you know the drill), waking up in the middle of the night to nurse, doing preschool drop-offs, all while working a very intense full-time job. I was worn out, to be sure. But it struck me as a standard new-working-mother worn out. I didn’t even consider the idea that it could be cancer.
I have an extensive family history of breast cancer and, if I’m honest, I always assumed I’d get breast cancer in my 40s. But I told myself that I was smart, exercising, and eating healthy. I stayed on top of research and I got early mammograms as recommended by my doctor. Everything seemed normal in that realm and I didn’t have risk factors besides my family history, which is why I didn’t really consider that anything was wrong, let alone wrong enough to consult a doctor right away. After all, when would I have had the time?
But then I suddenly began suffering from constipation that wouldn’t go away—and at a level I’d never experienced before. I needed relief. I finally sought out my physician, who prescribed laxatives. Off hand, I mentioned that I was exhausted. He took what I thought was a throwaway comment seriously and suggested we do some tests.
At the time, I didn’t fully appreciate how rare it was for a doctor to really listen and take note of a symptom like exhaustion, when so many have been known to shrug off such symptoms as psychosomatic, especially in women. Studies have revealed that women are prescribed less pain medication after surgery than men even though women report more frequent and severe pain. Women are also more likely to be told their pain is caused by emotional factors or stress. So I am particularly grateful to my doctor who ordered those labs.
The tests were inconclusive, but they did reveal that I was dangerously anemic. I landed in urgent care where I had to get a blood transfusion. Strangely, this discovery ended up saving my life, because it pushed my doctors to schedule the colonoscopy that ultimately revealed a malignant bleeding tumor in my colon. (Unless you have colon or esophageal cancer in your family, most people don’t get colonoscopies until age 45, the new age for colon cancer screening). I had stage IIIc colon cancer. My identity was so wrapped up with being a new mom—cancer just didn’t live in any part of that identity. After learning of my diagnosis I felt shocked.
Once I had a diagnosis, my treatment plan was put in place. And it was brutal—a week after my diagnosis, I had surgery to remove nearly a third of my colon and 36 lymph nodes, half of which were cancerous. Following recovery from surgery, I had six months of chemotherapy infusions every three weeks, followed by two weeks of oral chemo. I was lucky that the side effects—nausea and fatigue—were only debilitating the week after my infusion. I also experienced neuropathy, which for me was a painful sensitivity to cold, but that only came during the final rounds of treatment. That, however, is something I still have, though I experience it only rarely. But chemo affected me in other ways I hadn’t anticipated: my facial muscles would freeze during a cool breeze or in brisk temperatures, forcing me inside. I found myself suffering from social anxiety in a way I hadn’t before. I also had reduced mobility in my hands, which made it difficult to do simple tasks like tying my shoelaces, writing with a pen, or gripping a fork.
The treatment wore on me. But that wasn’t the hardest part about having cancer. Being sick took me away from my very young kids, a fact I continue to grieve. I had to wean my new baby weeks after my initial diagnosis—I nursed her for the very last time on the morning I went to my first chemotherapy. I missed countless drop-offs and pick-ups, trips to the zoo, and playdates at the park. Most days I could summon the energy for my kids. I was even able to work part-time throughout my treatment. But missing those everyday moments continues to fill me with a deep sadness.
Still, I needed to learn how to live in this new reality of neverending doctors’ appointments and chemo cycles. In spite of my illness—or perhaps because of it—I strove to become the parent I most wanted to be. I would talk to my baby about what was going on. Of course, I knew she didn’t understand my words, but talking felt comforting, I think, to the both of us. Initially it felt strange, but it was so helpful to be able to articulate my fears of surgery, chemo, and the reality that no one around me wanted to acknowledge—that we didn’t know whether the treatment would even work. It felt good, even grounding, to tell her that no matter what happens, I loved her.
My older daughter, who was 3 at the time, was processing everything through her play, playing doctor to her babies, to her stuffies, to her mama. It enabled me to explain to her in an age-appropriate way what felt inexplicable. “Mama has an owie in her tummy.” “A doctor is going to take it out. She is going to need medicine that is so strong it will make her feel tired and sick even while it is working.”
But when she asked, “And then mama will be better?” I realized I didn’t always have the answers. Or at least not the easy ones.
Becoming a new parent is already a lonely business. It was even more isolating to be a sick new parent who didn’t know others like me. I am lucky to have an amazing husband who could be present both emotionally and physically for me and our kids. Our local support system was incredible and I have a network of friends and family all over the country who were rooting for me, visiting me, and sending me goodies. Still, I needed someone to commiserate with who understood the fear of leaving behind family and the stress of holding it all together. I found myself quickly falling through the cracks with medical social workers who were trying so hard but just didn’t know of services that could help a young parent like me. They couldn’t advise me on books for my kids, or tips for talking to a 3-year-old about hospitals, or a community that might help lessen the emotional load.
So when I met another 30-something-year-old mom named Aimee Barnes who received a breast cancer diagnosis the day before she gave birth, she immediately felt like a kindred spirit. Over coffee and walks, texts and tacos, we bonded over our cancer and how our kids were responding to our treatments, as well as grappling with our changing bodies, and the way our friends, marriages, and careers were shifting. Over those many months, our conversations revealed something that we both knew: Despite being part of a growing demographic (one of the only age groups where cancer is on the rise is 20-49), there were relatively few resources for families like ours.
Those conversations spurred us to start the Bright Spot Network, a national nonprofit organization dedicated to providing what we couldn’t find for ourselves elsewhere: a community for parents with cancer, their caregivers and partners, and a place to seek resources for our kids.
What started as a spark has grown into a beautiful community of young parents with cancer who are raising kids while doing the unimaginable task of parenting while sick. We have monthly support groups for parents in active treatment and navigating survivorship, for those parents living with stage IV cancer, and for partners who are doing the difficult task of caregiving. We also provide barrier-free financial grants; free age-appropriate books for kids about cancer, big emotions, grief, and loss; free boxes full of art projects for parents in recovery; web resources; and more.
The launch of Bright Spot Network coincides with my yearly “cancerversary.” It’s a day full of mixed emotions for me—I’m eternally grateful to be here but also still wracked with grief. This past year, there were new layers of emotions: Two years since my diagnosis, I had a little bit of space to stretch my elbows and think about the ways that cancer had changed me. I decided to leave my job to build out this new organization. I was scared but I knew it was the right move. Bright Spot Network and the community built within it had become bound up within me and my cancer experience. In these last few years I have new understandings of community and its importance. This all felt just right.
I’m two and a half years past my original diagnosis. I’ve been getting scanned every six months. Soon that will become annual, and hopefully, if all goes well, I won’t be scanned at all.
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