The average life expectancy following a diagnosis of mesothelioma is 4 to 18 months. But Heather has defied the odds, celebrating 18 years and counting.
From Symptoms to Diagnosis
Heather was a busy and successful salon owner in a suburb of Minneapolis—St. Paul, Minnesota. She loved styling people’s hair, and she wanted to pursue that passion for the rest of her life. During her pregnancy, she often felt short of breath, a common occurrence for many pregnant women. But Heather also experienced some symptoms that are not common during pregnancy: She lost weight and felt constant pressure underneath her left lung.
After giving birth, Heather returned to work, but she was exhausted all the time and looked very pale. When her sister saw pictures, she urged Heather to see a doctor right away. The doctor found that Heather was anemic, and she was prescribed iron supplements. Heather continued to look pale, feel tired, and lose weight over the next week. She went back for an X-ray and CT scan, which led to the discovery of fluid around her lungs.
Two weeks later, Heather was diagnosed with mesothelioma. She was told it was caused by asbestos exposure. Heather thought back to when her father worked in construction, mainly with drywall and sanding. She also remembered seeing warning signs of asbestos present in her school. The doctor continued with the devastating news that Heather had terminal cancer – there was no cure. Heather was told that if she did not get treated, she would have up to 15 months to live, and if she chose to have chemotherapy, she might live for 5 years.
A Surgical Option
Heather was determined to be there for her family. She inquired about treatment options, and her doctor told her about a complex surgical procedure called extrapleural pneumonectomy. Undergoing this operation would mean traveling to Boston to see a well-respected mesothelioma specialist—and might give Heather at least 10 more years.
Within 2 weeks of her diagnosis, Heather and her husband traveled to Boston. Tests and a biopsy confirmed that Heather was an ideal candidate for the procedure. One month later, on February 2, 2006, Heather had the surgery: her lung, the lining of the lung, the left half of her diaphragm, and a rib were removed. Heather refers to that day as “Lung Leavin’ Day.” She also underwent a chemo wash, a hot fluid with chemotherapy drugs that was pumped into her chest cavity to remove remaining cancer cells.
After her surgery in Boston, Heather returned home to St. Paul and continued her treatment. She underwent 4 sessions of chemotherapy, 30 sessions of radiation, and IV hydration every week. There were times when Heather thought about giving up, but her nurses’ encouragement and her desire to be there for her baby led her to do everything possible to kill any cancer cells left behind. When her treatment was finally over, Heather was overjoyed.
Effects of Treatment
Heather spent a lot of time in the hospital and faced severe side effects from her treatments, some of which she still experiences today. After the surgery and the chemo wash, she developed fertility issues and temporary kidney failure. She experienced multiple long-term side effects from the systemic chemotherapy and radiation as well. The left side of her body grew weaker. Today, Heather’s left hand and arm continue to be numb, and she has little grip strength. Her left vocal cord was paralyzed, and the procedure that Heather received to bulk up her vocal cord is now wearing off; she plans to undergo the procedure again. She also often uses a white noise machine, due to tinnitus.
Extraordinary Support
Heather has been amazed by people’s kindness and generosity. During her treatment, neighbors she didn’t know very well placed money in her mailbox, and one of her former salon clients cleaned Heather’s home every week. People from the local church brought food. Her parents’ church also held a benefit, raising money to help Heather.
Heather is very thankful to have support from close family and friends too. Her parents helped watch her baby while Heather rested and healed; her husband went back to work to help pay the bills. And Heather’s baby’s laughter and effervescent joy helped Heather during the worst of times.
Advocating for Advances in Research—and for Other Cancer Survivors
Heather discovered within herself a powerful advocate for cancer survivors. Since her diagnosis, she has made major life changes. She sold her salon and has dedicated her life to advocacy and awareness.
Heather regularly speaks with cancer survivors who are newly diagnosed, going through treatment, or have already completed treatment. She has traveled around the world to speak at conferences about rare diseases and asbestos awareness and to attend fundraisers. Heather also has been involved in a Congressionally Directed Medical Research Programs panel, most recently on survivorship initiatives, and she reviews research grants for emerging research on mesothelioma.
Each February 2, Heather and her family mark Lung Leavin’ Day, the anniversary of her surgery. Friends and family—sometimes more than 100—gather with Heather in her backyard to commemorate the day and to raise money for mesothelioma research. They write their fears on a plate and then break it into a bonfire. To date, Heather has raised over $30,000 for mesothelioma research from the annual celebration.
Advice to Other Cancer Survivors
Heather encourages cancer survivors to speak up, to recognize their own power in achieving the best possible quality of life. “I think that’s why I do advocacy,” says Heather, “to urge people to speak up and be your own advocate.”
She recommends that cancer survivors share their experiences with other survivors and caregivers. “By sharing your story, you can inspire somebody to carry on and get through something that’s giving them a hard time.” Heather recalls from her own experience that even small things can trigger reactions and flashbacks. “Survivorship is difficult to navigate, and PTSD is a real thing. … Hire a coach. See a therapist. Whatever it takes, make sure that you put your feelings and yourself first.”
Heather also emphasizes that going through a cancer journey is tough, but there is support out there. “No matter what you find yourself in or up against, look for the help and the hope. … Support can help you get through the darkest of times.”
Heather plans to continue her work to support survivors, as well as to raise awareness and money for research. By sharing her story, listening, learning, and advocating, she remains determined to help others and to spark change.
Image: Heather. Credit: Jeannine Pohl, Block Portrait Studio
No matter what you find yourself in or up against, look for the help and the hope. … Support can help you get through the darkest of times.”