The numbers are getting bigger! We started this blog series with Stage 0 breast cancer, touching on the challenges, fears, and emotions that Firefly participants have experienced at each stage. Challenges such as survivor guilt, making treatment decisions based on ambiguous test results or conflicting professional opinions, unexpected changes to treatments and surgeries, and more.
Today, we share the stories of two women who’ve experienced a Stage 3 breast cancer diagnosis.
We’re Not in Kansas Anymore
The call from Serena’s* doctor began the whirlwind that was her breast cancer. A whirlwind whipped up by going online to find information about Stage 3 breast cancer. There, Serena saw horrible images, read horror stories, found scary statistics and felt herself growing more and more afraid.
As if that wasn’t stressful enough, “I was offered a new job on the same day I received my diagnosis!” Serena exclaims. “I didn’t want to accept the position because I didn’t know what was ahead for me. But they said the position was mine to keep!” Serena says incredulously. When the person Serena was to replace found out about her situation, she stayed on part-time so Serena could focus on her treatment.
Despite a new job, Serena found that the most challenging aspect of her breast cancer experience was being a wife to her husband and mom to their five children (her oldest a sophomore in high school, her youngest a kindergartner). Being there to listen, to make meals, to take them to their activities, to tuck them into bed at night, to give hugs, to help with homework, to assist with college applications and visits, and so on (the list is endless). Wanting to keep things as normal as possible for her kids, a Stephen Minister at her church lined up meals for the family and carpooling for her children’s various sports and activities.
For Serena, “My faith was my key to coping, otherwise my mind had the tendency to wander and not focus on the tasks at hand.” Serena continues, “Tasks like working and learning new things on my job. This kept me in the ‘living’ arena instead of being at home alone while going through treatment.”
Connecting with a Firefly Guides was incredibly helpful for Serena, as well as writing in a journal, which Serena recommends to other women going through breast cancer. “I was angry and needed a place to get those feelings out,” Serena admits. “It was a lifesaver.”
“It never occurred to me that I could die from this.”
Nancy* wasn’t exactly surprised when she was called back for additional tests after she went in for a mammogram: she had experienced a change in appearance in one of her breasts six months ago and her mom, grandmother and cousin had previously experienced breast cancer. But Nancy was surprised that her doctor hadn’t found anything on the mammogram images from six months ago when she had first noticed the change in appearance: her lobular breast cancer cells were long and stringy, which helped them escape detection on previous routine mammograms. By the time her breast cancer was found by her doctor, it was Stage 3.
“It never occurred to me that I could die from this,” Nancy states. “Instead, I had this incredible fear of pain.” The pain that would come from a sentinel node biopsy, bilateral mastectomy, expansion, and reconstruction. The painful side effects of chemo and radiation. After going through all of this, Nancy admits, “My fears of pain were not justified: I was able to control the pain with medication.”
At the time of her diagnosis, Nancy wasn’t married and did she have any family in town. “I had to lean on my ‘coffee ladies’ for support,” Nancy recounts fondly. “They went to chemo with me, they came to doctor appointments and were my second set of ears, and they helped me to laugh at things—like a continuously runny nose from lack of nose hair!” she exclaims.
One of the most difficult tasks Nancy needed help with was stripping her drain tubes after surgery. “Those drains are so gross!” Nancy exclaims. “I figured out that having some other sensory stimulation during the process really helped: we’d go into the bathroom and turn on the bright lights, the fan, and the radio. Then I’d run the drain bulbs under cold water so that they didn’t feel like warm, human body fluid. This was the key!” Nancy laughs.
With all of the help she was receiving, Nancy worried about “friend fatigue”—wearing out her caregivers—and found that some of her relationships changed because of this. Since her diagnosis, two of her friends have received their own cancer diagnosis. Nancy reports, “They both were thankful that I had brought them with to chemo because they knew what to expect, which demystified it and made chemotherapy a bit easier.”
A Professional Perspective
“In a perfect world, I wish we were able to identify every parent who had children in the home at the time they are diagnosed with cancer,” begins Ali Cain, licensed social worker at the Piper Breast Center—United. She continues, “I wish they would automatically be able to touch base, by phone, with an oncology social worker. But that doesn’t always happen,” Ali admits, with regret in her voice.
She and her colleagues do their best, during appointments and phone conversations, to identify parents who have children at home. They ask how things are going at home, how their children are doing, and if they need resources to talk to their kids about cancer. If a parent needs help, Ali offers age-appropriate resources: her health system’s SimpleTalk program (which includes age-appropriate books, workbooks, and print and online resources), and Angel Foundation (a local nonprofit that supports adults with cancer and their families).
“We encourage our patients who are parents to get connected with Angel Foundation,” Ali explains. Their programs include camps, activities, events, and support groups for children, as well as financial and emotional support for parents.
At the other end of the spectrum, for people diagnosed with cancer who are single and do not have family living with them or nearby, getting help throughout cancer treatment can be a tremendous challenge. “It makes sense why patients continually turn to 3 or 4 of their closest friends for help,” states Ali.
However, to minimize friend-fatigue, “It can help to brainstorm your support network,” Ali suggests. “Do you have neighbors you know? What about your colleagues? Do you have a faith community?” She continues, “I think people’s networks might be larger than they think.”
Ali acknowledges that it is extremely hard to ask for help, but she reminds us that, “People around you genuinely want to help you if they know you are going through a tough time. This is an opportunity to do that.” Ali also encourages patients to connect with community resources that can offer support services such as rides to treatment (American Cancer Society’s Road to Recovery) and free meals delivered to cancer patients (Open Arms).
In the words of Thomas Jefferson, “I believe that every human mind feels pleasure in doing good to another.”
*Names have been changed to protect privacy.
A huge thank you to Serena and Nancy for sharing their story, their challenges, and their fears with our Firefly audience. And a shout out to Ali Cain at Piper Breast Center—United, who was willing to share her professional experience and knowledge with us as well! We are a Sisterhood of amazing women!
Written by Amy Tix, Firefly Staffer and breast cancer survivor, who also thinks surgery drains are gross, but not to her 3-year old toddler, who decided to pull on one while attention was being focused on the other side’s drains. Screaming and crying ensued, from all present!