In 2012, at 28 years old, Emily Bennett Taylor was diagnosed with stage 4 adenocarcinoma lung cancer. This is the most common type of lung cancer that develops in people who don’t smoke.
In most cases of stage 4 disease, the chances of survival are slim. Treatment is usually palliative care, which focuses on managing uncomfortable symptoms instead of curing the condition. But Emily’s tumor shrank enough during chemotherapy treatments that her doctors recommended a pneumonectomy, or a surgical removal of the lung.
During the procedure, they removed her right lung, part of her right diaphragm, and the lymph nodes down the center of her chest. They also removed part of the pericardial sac (a two-layer sac around the heart that anchors the heart in place, prevents it from overfilling with blood, and provides lubrication to avoid friction as it beats) and rebuilt it with a Gore-Tex material. Emily knew her life would be different after her surgery, but she wasn’t sure how different. There’s a scar that runs from her right breast to the right side of her rib cage as a result of the doctor “split[ting] her in half.”
The surgeon told Emily stories of pneumonectomy patients who were able to bike for 10 miles a day. But she had also heard less optimistic stories. “I knew people who had only a lobe out and they needed oxygen every time they got on an airplane,” she said.
Learning to slow down
While most people with two lungs expect people with one lung to be winded all the time, the surprising fact is that the remaining lung expands to replace the space in the chest. After recovery, a person with one lung can expect to have at least of their previous respiratory function.
Emily isn’t breathless all of the time, but she does need to move a lot slower than she did before her surgery.
The slow pace of Emily’s current life is a 180 from her life before her surgery. Before her diagnosis, Emily didn’t spend a lot of time taking care of herself. Even when she took a sick day from work, she used it to get her errands done instead. “As a strong, fairly healthy, active, 20-something woman with a career, I was used to pretty much doing it all,” she said.
Now, instead of getting out of bed and walking across the room in the morning, Emily must first sit on the edge of her bed for several minutes so her blood rebalances before she can stand up. If she tries to get out of bed too quickly, she’ll pass out.
“My husband and I think that a big reason that I’ve been able to be successful and survive when the odds were only 1 percent chance of survival … is sleep and recovering and letting my body rest.”
As easy as that sounds, Emily had to learn how to relax. That lesson was one unexpected side effect of chemotherapy.
“It took my husband telling me multiple times ‘you need to be selfish.’ It’s such a hard word because we’re told our entire lives not to be selfish, and to help others, and to be a good person, and all that stuff, and it felt like I was being a bad person by being selfish. After a couple weeks into my diagnosis it started to sink in that if there’s ever a time to be selfish … it’s when you’ve been diagnosed with cancer.”
Slowing down and taking care of herself became crucial to her recovery from her pneumonectomy.
Living with an invisible disability
Missing a giant vital organ isn’t the only adjustment for Emily. Most people don’t notice she may have a disability unless she’s in a bathing suit and they can see the scar on her back.
“I look normal; people expect me to act normally,” she says. Sometimes, she struggles with deciding when, if ever, to tell someone about her disability. “When do you tell people, ‘Oh, I’m struggling with this flight of stairs. Please just pass me, because I’ve only got one lung.’”
Before her diagnosis, she would have considered herself too strong to need help. Now when Emily goes to the grocery store, she has someone help push her cart out and load her groceries into her car.
“I’m disabled, and it’s still kind of hard for me to say, because mentally I want to think of myself as incredibly strong. But that’s part of my whole learning process and realizing that I have a new normal and it’s ok to have a disability.”
Redefining the idea of family and motherhood
Being a mother is a lot different for Emily than she ever imagined it would be.
Emily and her husband Miles had planned on starting a family before her cancer diagnosis. After learning about her cancer and before starting treatment, Emily went through in vitro fertilization and had nine embryos frozen. After two years of being NED (no evidence of disease), they decided to start their family.
Her doctors were concerned about her body being able to carry a pregnancy, so the couple found a surrogate.
In 2016, their twin girls, Hope and Maggie, were born.
While Emily spent her two years NED building up her strength, she still needs a lot of rest in order to get through the day.
“My heart is pumping that much harder to try to oxygenate my blood and my left lung is working that much harder, I’m just tired a lot, all the time.”
She estimates that she needs about 10–12 hours of sleep every night. Emily and Miles knew that she wouldn’t be hands-on 24/7 like a lot of other moms. But the couple decided that if they proceeded with having a family, Emily would need to dedicate herself to staying healthy for their children.
When their daughters were first born, they had a night nurse that helped for the first three months. Her parents came into town to help and her in-laws moved in with them. Her husband took the night duty until their daughters were sleeping through the night. “I needed to realize that I didn’t have to be the perfect super-healthy mom that could do everything all at once in order to be a mom in general.”
Appreciating her new life
Celebrating milestones has been a huge part of Emily’s treatment and recovery process. The day before her surgery in New York, Emily and her husband celebrated what her husband dubbed “Lung Day.” Lung Day was full of activities that could easily be done with two lungs. Their goal was to do it again next year when Emily only had one lung.
She blew up a balloon and blew out birthday candles. They went dancing in Central Park. She went to the top of the empire state building and screamed, “I’m NED!”
“I wasn’t at the time,” Emily said, “but it was our huge goal.”
On the one-year anniversary of her surgery, they had another Lung Day.
“My husband actually woke me up, and brought me breakfast in bed, and then said, ‘Get ready. You have 10 minutes.’”
He had her climb up onto the roof and shout, “I’m NED.” It was a little embarrassing for Emily, as the neighbors were around, but, like birthdays, Lung Day is worth celebrating. That year, her friend made her a lung-shaped cake and she swam a lap in the pool while everyone cheered.
Four years after her surgery, Emily is living happily with one lung, her two daughters, and her husband Miles. Her life has slowed down since her diagnosis, but it’s still very full.
“You can lead a completely full life with one lung, and nobody should limit you and tell you what you can and can’t do. For myself, I hated running to begin with so it was never a huge goal for me to get back to running. I know people with one lung who run 5ks, 10ks, and half marathons. They jog on a daily basis, and they’re just as active as anyone else. It’s entirely possible. You should never be afraid that you aren’t going to have a full life after a pneumonectomy.”