Living With Dying articles
One Family’s Journey Through Disease
By Leah Carey
March 28, 2017
Debbie was diagnosed with leukemia when she was 14 years old. It was the 1970s and children with leukemia often died at the time.
Debbie was one of the lucky ones: she had aggressive chgraemotherapy and radiation that pushed the disease into remission for several years.
When Debbie’s leukemia returned at age 18, her older sister Meri was a match to offer a successful bone marrow transplant.
But the treatments that cured the first cancer left Debbie with a cascade of other health problems.
“She got a lot of secondary cancers, which is usually what happened because they gave these kids so much radiation,” Meri said.
Over the years she got hepatitis C from transfusions, cirrhosis and liver cancer, breast cancer, a tumor on her spine, and more.
Debbie died in 2012.
That one story is horror enough for one family. But it is only the beginning of Meri’s family history of disease.
Meri’s younger sister, Ruth, has been living with metastatic lung cancer for the past four years; her father had kidney cancer in his 50s and died from lung cancer in his 60s; her aunt had three different types of cancer; her cousin had colon cancer before she was 50.
Four years ago, Meri survived breast cancer.
“I never thought I was going to die,” Meri said in an interview last week. She doesn’t see herself primarily as a breast cancer survivor. “That’s not really any more my identity than a lot of other things.”
But given her family history, she admits, she wouldn’t be surprised if another cancer diagnosis were in her future.
Medical personnel have not identified a genetic component to the family’s history of cancer.
Which leaves Meri talking a lot about impermanence and the cultural pressure to be “okay.”
Learning to compensate
Meri has seen sickness from all sides – as a caregiver for her loved ones, as a patient herself, and as a medical professional in the community.
From all those viewpoints, she has seen it repeatedly: sickness changes us.
“You change profoundly,” she said. “You morph into something else.”
Living with the constant ups and downs, the dramas and traumas, of chronic or terminal illness requires us to develop a new set of coping skills.
“With illness, you have the crisis and you fall apart and it’s fearful and you’re in this state of alarm. But you can’t maintain a state of alarm all the time, you just can’t. So then that’s the new normal – the baseline changes,” Meri said.
At some point, a new crisis develops and everyone falls apart again for a little while … and then that becomes the new normal.
“I think that’s human nature,” Meri said. “You see it in a war zone, people normalize things. It’s the new normal. We just compensate.”
That adaptation to the new normal is essential to surviving the day-to-day issues, but it can also have a dark side that Meri knows all too well.
“There’s a cultural pressure to say, ‘Yes, I’m fine, I’m fine.’ And I personify that,” she said. “It’s obviously a coping skill to normalize things … but that’s not a good thing in our society.”
Having been used to the role of helper in both her career and her family, going through her own bout of cancer forced Meri to confront her own discomfort with being helped.
“The most difficult thing by far was when I was sick and having to ask for help. That was the most humbling,” Meri said. “I’d never been the need-er. I am the giver. It was incredibly humbling to be helpless.”
She said she has a “wonderful group of friends” who came when she called.
But then she paused for a moment of reflection and said, “There were times when I asked and the help didn’t show up, and that was another lesson.”
What was that lesson?
“Not taking it as rejection or personally or feeling unloved or unlovable,” Meri said. “Unworthiness. All of our very vulnerable stuff.”
Meri has two daughters. When thinking of their future health, she chooses to focus on the major medical advances of the past few decades.
“I have a lot of faith in modern medicine,” she said. “Debbie had her bone marrow transplant when it was brand new. Ruthie’s been alive for four years with metastatic lung cancer. It’s unheard of. All of these new monoclonal antibodies, all these new targeted therapies … I believe in medicine.”
That doesn’t mean that she lets her daughters get away with doing things she believes are willfully reckless of their health.
“One of my daughters had a time when she was smoking tobacco and she was like, oh it’s natural tobacco. And I was like, NO! Are you crazy? Three people in my family have had lung cancer. This is not going to work!”
One of her daughters, Jessica, 22 (no word on whether she’s the former tobacco smoker or not!), spoke with us briefly by phone to talk about what it’s like to grow up with this type of family history.
“I think that it’s in the back of my mind, though it’s not super-conscious right now because I am young and healthy and it feels very distant. Even though I know that might not be true,” Jessica said. “I make jokes about, well we all know I’m going to get cancer!”
All of the kids in her generation are aware of what the family health history might mean for them. “So much of my family has put a lot of energy into reassuring the young people that they’re going to be fine,” Jessica said. “I think that a lot of people in our family do worry about it.”
But she chooses to focus on making healthy lifestyle choices and do the best she can each day.
“A lot of times it’s made me feel like there’s nothing that you can do. Like I can eat as many raw foods as I want now, which is my current thing, but I really have no idea,” she said.
Reframing illness and loss
“I’ve had a lot of loss. I’ve spent a lot of time grieving in my life,” Meri said. “I think maybe that prepares you for more loss.”
It also seems to be preparing Meri for whatever she might experience in her own future health.
“We’re all going to die. I think maybe I’m being more realistic about it. I’m already 57. I’ve had 57 years. That’s more than most,” she said. “I don’t say that to be cavalier or courageous. It’s just that I really think that I believe that.”
She remembers being in the midst of breast cancer and the perspective shift it created for her.
“All of a sudden, you don’t sweat the small stuff anymore,” Meri said. Who cares if she got stuck in traffic or lost her cell phone?
“When you’re in it, you’re just so focused, and I think that’s kind of a gift. I see that as a silver lining,” she said. “I would love to say that sticks, but no it doesn’t. I’m mired in the trivialities and garbage of everyday life. That’s what I would wish for – to hold on to some of that wisdom.”
In her family, she said, they have a three-day rule: you’re allowed to wallow in your pajamas eating cereal for three days. “Then you have to pull your ass out of bed and keep going.”
Meri has also instituted a three-week rule for herself. “Having had cancer, I think it’s really easy to think every ache and pain is my metastasis, so I have a three week rule … I can ignore it for three weeks. And then if it doesn’t go away in three weeks, I’m going to pay attention to it. Guess what? They all go away in three weeks! So it’s not my metastatic disease this time.”
Which brings us back to the idea of impermanence and how unknowable the future is, especially in terms of disease.
“When Ruthie was diagnosed after Debbie died, everybody contacted me to ask, ‘What does this mean?’” Meri said. “I said, ‘I think she’s got months to live.’ That was a fair thing to say – she had stage four lung cancer … I was wrong. That was four years ago!”
During my mother’s treatment, there were many conversations with medical providers about whether she should have genetic testing for the BRCA1 and BRCA2 mutations. Everyone seemed to have a different opinion.
Her surgeon thought that, as a woman of Ashkenazi Jewish descent (a prime contributor to the BRCA mutations), she should have the test.
Her oncologist said that her cancer cells didn’t look like a BRCA-type cancer, so she didn’t think it was necessary.
The geneticists said yes – a person with a hammer naturally wants to hit the nails.
The financial people said no – the test was very expensive and unlikely to be covered by insurance.
At the end of every conversation, people looked at me.
“Does your daughter want to know her risk?”
It was, everyone covertly acknowledged, too late to make a real difference in my mom’s health and treatment plan. But it might make some difference to my future.
Mom and I had many conversations about whether she should have the testing or not. No matter how many points we argued for or against the testing, it always seemed to come back to one simple exchange.
Mom would ask, “Do you want me to get the testing?”
I would respond, “If you want to get the testing for your own information and treatment, I will support that decision completely. But don’t get it just for my benefit because I don’t really want to know.”
What positive difference could that information have in my life right now? Either I’m predisposed or I’m not, and knowing or not knowing won’t change it either way.
On the other hand, I’m a firm believer that excessive worry can make us sick. And I am, unfortunately, a bit of a worrier.
I can only imagine how crazy I would make myself if I were BRCA-positive and had to spend the rest of my life knowing that cancer was most likely a “when,” not an “if.” (I don’t plan to have children, so I don’t carry the burden of also making this decision on their behalf.)
That doesn’t mean that I don’t look to the future. With two generations of reproductive cancer in my immediate maternal line, I have already begun consulting with medical professionals about whether having a prophylactic hysterectomy after menopause makes sense for me. Just because I don’t want the specifics of my genetic predisposition for cancer hanging like the Sword of Damocles over me doesn’t mean that I want to bury my head in the sand.
These are not easy decisions. There is so much hanging in the balance, and every single one of us will have a different set of deeply personal calculations to make.
Recently there has been a move in Congress to allow employers to require their employees to get genetic testing and penalize those who don’t as part of workplace wellness programs (HR 1313 was forwarded to the House Ways & Means Committee earlier this month and is not part of the American Health Care Act that was pulled from a vote last week.)
The idea that an employer could someday force me to learn this information under threat of financial penalty is, in a word, horrifying.