Putting the Reality of Cancer into Words
By CHAD ESTES — Special to the Idaho Statesman
It is the end of October, what some cancer patients refer to as Breast Cancer In Your Face Month. We’ve seen pink everywhere — including beer cans, T-shirts and NFL players’ sweat towels and socks.
As far as awareness, pink marketing has become its own recognizable brand. Yet, in terms of effectiveness, the jury is out on whether the awareness campaign is actually making strides in the battle against breast cancer with education and discernible action.
Overall, the pink message is cheery: “Breast cancer is survivable, so let’s party!” And while all survivors deserve to celebrate their very difficult journey through cancer, the message can come across as dismissive for the warriors who are still in their fight, and especially for those whose cancer has come back.
And it does come back — to as many as 30 percent — which amounts to 41,000 deaths in the United States every year.
BEHIND THE SURVIVORS
I got involved with breast cancer warriors and survivors in 2011 to help them share their stories in words and professional photography. In preparation for our first art show in October 2012, eight Idaho women bravely posed for photos that revealed their scars. Many of these women found reasons to smile — not only had they conquered their medical enemy, but they had also found a new lease on living.
One of the women, however, didn’t have the same emotion as the others. Her cancer was back. She had a young boy in second grade. She told me she didn’t feel like smiling in her photo. I told her, of course, that she didn’t need to.
Trina Klier-Murri’s tattoo exemplifies the beauty and strength of those who battle breast cancer.
Trina Klier-Murri, was just 36 when she was first diagnosed. She had both breasts removed, endured chemotherapy and even had her ovaries removed for good measure. Her cancer fed off estrogen, so she took medicine that would shut down the estrogen receptors in her body. She was given a clean bill of health, so Trina went on with her life. She opted for breast reconstruction surgery, and a tattoo of angel wings from shoulder to shoulder represents her journey.
But right after her life was supposed to be (somewhat) back to normal, she began to have backaches. After a new set of scans, she was informed that her cancer had metastasized, meaning that it had spread to other areas in her body — in her case, her bones.
Metastatic breast cancer (MBC) steals the lives of 97 percent of its victims. There is no cure; it is basically a death sentence. Treatments won’t cure the disease; they just keep it at bay as long as humanly possible, or until the patient says, “I’m done. … ”
Many breast cancer patients don’t realize these harsh statistics. Even some oncologists stumble when it comes to explaining the severity of breast cancer if it metastasizes.
Meg Donahue, whose cancer returned eight years after her first battle at age 32, shares her story: “When my doctor explained to me that the cancer had spread to my bones, I told him I’d just fight it the way I did the first time. He just looked at me sort of weird. It wasn’t till I looked up my condition online that I realized statistically that I had between 24-36 months to live. I called my mom. She had read the same thing but didn’t know how to bring it up to me.”
The awareness that breast cancer is survivable, especially when it is diagnosed and treated early, is one of the successes of the Think Pink campaign. Unfortunately, that message has limits that do not get communicated with the 30 percent who get MBC.
Trina’s friend Sheila Rodriguez, 44, explained that her first diagnosis of cancer in her right breast was in April of this year. Upon further tests, her medical team had to break the news to her that it had already spread. When your breast cancer has metastasized, you stop concerning yourself with methods of breast reconstruction; you start thinking about how you are going to best live each day you have. For Sheila, who has a third-grade daughter who sits next to Trina’s son at school, much of her focus is about the time she has with her family.
All four of the women with MBC interviewed for this article have children in elementary school.
‘YOU’RE NOT DEAD YET?’
Trina contacted me a couple months back. Her scans hadn’t turned out as they’d hoped. Instead, doctors found the cancer had moved to her liver. It was time to start a new round of chemotherapy, which would mean that she would lose her hair, again. She asked if we could meet together in a local park to take some family photos while she still had her natural curls. The photo session went well, but what we had just captured was more than Trina’s hair. Her son, though he doesn’t grasp the motivation behind these photos right now, will treasure them the rest of his life — especially the ones of his mom kissing him.
She invited me to her second head-shaving party. Not only did I photograph the loving moments between Trina and her friends and family, she also gave me a turn with the clippers. Earlier in the day we had gone back to the park to capture more family photos with her parents. Trina sat on her dad’s lap for a couple of shots. He wouldn’t smile; pain was too close to the surface. There were plenty of emotions, lots of love, but no glee.
Three of these women with MBC live in the Treasure Valley. The fourth is from Hailey. All four gathered at Trina’s home to share their stories. Dani Stern, who originally fought breast cancer in 2006 at age 35, has survived four years since her metastatic diagnosis. She fluctuates between scarily skinny due to medications and pleasantly plump due to steroids. She says her breast implants either look like perfectly round dodge balls from gym class when she is thin, or she becomes flat-chested when she is swollen like the Stay Puft Marshmallow Man.
At the moment she looks healthy and is sporting a baseball cap with pretty black curls that weave their way underneath the brim. The other ladies comment on her hair. She blushes a bit and admits it is her third set of locks. She takes off her cap. The sparseness of hair on top of her scalp betrays her condition.
Dani is anxious to share what hurts. She tells the story of how she was recently walking on the Wood River Trail near her home and ran into a friend. “You aren’t dead yet?” the friend asked. It becomes painfully obvious that while she is doing all she can to survive, including driving from Hailey to Salt Lake City on an almost weekly basis for treatment, others have already given up on her.
This opens up a lively dialogue among the four. “Whenever I have a friend say, ‘You know, I could walk out of the house tonight and get hit by a bus,’ as they try to relate to having an expiration date, I just tell them, ‘Yes, but you aren’t standing in the middle of the f***ing highway like I am.” The rest of the women laugh knowingly.
They have a lot to say about how people treat them. They don’t feel they fit in with breast cancer survivors. They get the sense that people are judging them for getting a recurrence of the disease even though all of these women did everything they were told to do.
They also feel neglected by the cancer societies. One woman admits, “They have used me to do fundraising for them, but none of it has ever gone to research on how to help those of us with MBC. I want to know, how do I get anything back for what I’ve paid into this cause?” Another states, “A woman wanted to do an article on me to help her raise money for her foundation. She said she’d send a photographer when I had lost my hair again. I feel used.”
One organization called MetaVivor has started a 30 for 30 campaign. In its words, “Since 30 percent of all breast cancer patients develop MBC — a fatal condition — then 30 percent of breast cancer research funds and 30 percent of breast cancer support activities should be dedicated to metastatic breast cancer. At present, only 2 percent of breast cancer research funds go toward MBC research, and support for the disease is rare.”
It could make a difference.
The women continue discussing how their lives have changed. Sheila, who had taken a few years off from work as a registered nurse, was ready to go back when her diagnosis sidelined her. Trina recently gave up her job, as she decided to focus her energy on her health, especially with the new medications being added to her treatment. While Dani would like to work and take her focus off her condition, she doesn’t have the ability to be a steady employee in the workforce. Instead, she finds organizations she can donate her time to. Meg is still working full time, and she said it’s sometimes awkward when her co-workers don’t know what to say. “Some people ignore me now because they don’t want to say something stupid. Others just come up and say stupid things,” she laughs. “Several have been very supportive, though, including one who puts his hand on my shoulder and asks about my day. Others offer hugs. The physical contact is something that I really appreciate. It communicates more to me about how they care about me as a person than trying to find words that would be difficult to express.”
Meg brings up how she deals with talking about MBC with her friends. “I find it best when someone simply asks me, ‘How are you today?’ If it is one of those times where I need to discuss my physical needs, I have the opening to do so with them. But if it is one of those days I’m trying to put it behind me and focus on something else, it allows me to steer the conversation in that direction.”
Dani expresses that much of the time she is having to figure out how to help other people deal with her disease, instead of the other way around. “I had to learn how to live. I had to learn how to gracefully be ill but not intimidate people. I’m trying to learn the etiquette of illness.”
WHAT THE WARRIORS WANT YOU TO KNOW
Figuring out how to care for our MBC friends isn’t easy. There are no set rules or guidelines, but there are some things we can remember.
• They need a lot from us but don’t always know how to let us know.
• They get a lot of care during the beginning of their diagnosis, but many times their needs grow as time progresses.
• They want us to bring meals but don’t want us to care about getting the dishes back (use plastic containers or aluminum trays that can either be thrown out or donated to charity).
• They want us to visit, but not if the only thing we can offer is pity.
• They want to talk about their illness sometimes, but not when it means they have to take care of us.
• They want us to cry with them, but they also want us to laugh at their off-color cancer jokes.
• They want us to talk about things other than sickness, but they want us to realize their lives will never be the same again.
• They don’t need us to try to make excuses for the disease or their circumstances, because they know we really say those things to satisfy our own feelings of discomfort.
• They want us to pray for them but also to accept that each day of life may be their miracle.
• They want us to rally around the issue of breast cancer, but they want us to make sure we are covering all of the bases, including MBC.
This is a tall order, but we have to be up to this task. What do we have to lose?
The reality is — them.