Acting on the Realities of Metastatic Breast Cancer

 Trina’s Klier-Murri's back tattoo, signaling her journey of hope and struggle. Photo by Chad Estes

Trina’s Klier-Murri's back tattoo, signaling her journey of hope and struggle. Photo by Chad Estes

COMMENTARY BY CHAD ESTES
SPECIAL TO THE IDAHO STATESMAN - October 14, 2014

Last October I partnered with my friend Trina Klier-Murri and three other Idaho women with metastatic breast cancer (MBC) to write an article for the Idaho Statesman that shared the difficulties of coping with the disease. In a culture full of pink awareness, save-our-boobies
campaigns and “a portion of the proceeds will benefit” merchandising, the realities of MBC too often go unnoticed. Cancer, when it is contained in the breast tissue, is a life-altering bully, but if it escapes to a person’s organs, it can be a killer.

NOT BALD ENOUGH?

Joan Lunden, the former “Good Morning America” host, was recently profiled on People
Magazine’s cover. Her head is bald because of her chemotherapy treatments for breast cancer.
NBC’s “Today” show wanted to kick off Breast Cancer Awareness Month with a special on the plaza with Lunden. They sent out the following request: “If you have undergone treatment that resulted in hair loss, please join us for what we hope will be an empowering moment for women.”

Nationally known blogger Jennifer Campisano, a 32-year-old mother with MBC who has family
in Boise and Sun Valley, was hoping to participate. She has been bald twice from her treatments
but now sports a short hairstyle. “Today” responded quickly after seeing her current
photo: “We are specifically looking for women who can be bold and bald on the plaza for an empowering moment to support breast cancer.”

Jennifer blogged her raw response: “My heart sank. I’d been bald twice. That wasn’t enough? Had I not been through enough (expletive) to merit the ‘bold’ stamp of approval from TODAY? I wasn’t welcome because I wasn’t BALD? What. The. Everloving. (Expletive). I was saddened and livid and frustrated, and then humiliated that I’d gotten my hopes up. I
checked the message boards for the online support groups I belong to, and I wasn’t the only one.

“You see, many, many people with metastatic breast cancer do not lose their hair. For many patients, especially if their tumors are fueled by hormones (which is the majority of breast cancer patients), broad spectrum chemo is a last resort used only after bone-strengthening treatments, anti-hormonal agents and other targeted treatments stop working. None of those other treatments cause hair loss. Neither do newer, targeted chemotherapies like the one I’m on. A lot of us with Stage 4 have our hair,” Jennifer continued in her blog.

“That doesn’t mean we won’t die from this disease unless researchers come up with something better soon. We face our mortality every day, live with side effects that range from mildly annoying to debilitating, and an estimated 40,000 people will die of MBC in the U.S. this year, and yet, metastatic breast cancer gets less than FIVE PERCENT of breast cancer research dollars.”

Jennifer’s blog got the show’s attention. A senior producer, a woman who had battled breast cancer herself, called Jennifer and told her that the show wanted to follow up. On Thursday of that week, Jennifer’s story of what it is like to face MBC was profiled in a short on-air segment.
As it finished, Joan Lunden publicly called for more MBC funding.

DECISIONS

The decisions to be made after an initial breast cancer diagnosis are numerous and life-changing. Options that surround surgeries, treatments, reconstruction and methods to reduce any future spread of the disease can leave a person mentally, physically and emotionally
exhausted. Their sacrifices and individual journeys should always be championed and supported.

Since breast cancer is diagnosed in one out of every eight women, they deserve to have a month each year dedicated to the rest of us being educated and motivated to defeat this disease — but it won’t come with just the celebration of pink, the glorification of scars or anything that is meant to invoke pity. Each journey is different. Each story is sacred. Each person is beloved.

And unfortunately, too many of these friends find out they are facing breast cancer of another color. The current numbers are staggering. As many as 30 percent of those who have battled breast cancer, like my friend Trina, will see it come back. And if it spreads, 97 percent of the
time it can be slowed, but not stopped.

BREAST FRIENDS

Trina was proud of our article last October. She was determined to keep educating people about MBC and would work only with breast cancer charities and organizations that made a
concerted effort to battle this stage of the disease. When the American Cancer Society launched a new event this year focused solely on raising money for breast cancer support and
research, Trina agreed to champion a team so we could highlight MBC as part of the 5k walk. What we didn’t know is that Trina’s personal battle against breast cancer would end Aug. 17. Now we have a team participating in the Saturday, Oct. 18, event in her honor.

 Photo by David Jay for The SCAR Project Before he died, Bill Becker participated in a portrait for The SCAR Project. Learn more at thescarproject.org.

Photo by David Jay for The SCAR Project
Before he died, Bill Becker participated in a portrait for The SCAR Project. Learn more at thescarproject.org.

After reading about a documentary being filmed on men with breast cancer, I became friends with Bill Becker and Bob DeVito of Connecticut.

Though the odds of males being diagnosed with breast cancer are much lower, at one in a thousand, the odds of MBC in men can be greater. Four years ago, Bill found a lump in his chest
and his journey began. Two years later, he started mentoring Bob when Bob was found to have the same kind of tumor. Together they started a foundation — Breast Cancer Brothers — to help save lives. They joined the documentary “Times Like These” to help combat the added shame of being diagnosed with what is culturally considered a “woman’s disease.”

After Bob’s treatment, he went into remission. He is rehabbing from knee surgery and is doing very well.                           

Bill’s story is different. His cancer returned and he underwent new treatments, struggled to get into clinical trials and fought for his health, all while maintaining the life of a husband, father and young grandfather. I offered Bill a speaking role at the upcoming ACS Strides event. The plan was that he would address MBC as well as get to discuss his documentary.

What made the idea even sweeter was that Bill’s youngest sister, Julia Farmer, lives in Boise and
has been active in ACS projects. Bill told me he just needed to get the details worked out with his documentary producer. Two weeks after our last conversation, his health took a turn
for the worse. Bob let me know that Bill was receiving hospice care at his home with his family. Bill passed on Sept. 17.

 Lindsay McNally posing in her Super Girl hoodie for The Reveal Mission art show, which you can see at the Boise State Student Union Building through Oct. 31.

Lindsay McNally posing in her Super Girl hoodie for The Reveal Mission art show, which you can see at the Boise State Student Union Building through Oct. 31.

Earlier this year, I met Lindsay McNally, who had battled through her first round of breast cancer like a champ. She viewed it as a blip on her radar screen and went back to living life. Last summer she started having significant pain in her hip, so she had some new scans performed.

When her orthopedic doctor told her she had cancer, she assumed it was bone cancer. Instead, it was the breast cancer that had found its way to her hip, skull, sternum, spine, wrist and pelvic bone. Now she is back to fighting cancer while still focusing on living a very full life. This summer she took up paddleboarding. This winter will find her on the slopes of Idaho’s ski resorts for the first time since she had rods installed in her hip and down the length of her femur.

PROMISING MBC RESEARCH NEEDS FUNDING

Dr. Cheryl Jorcyk of Boise State University works with a research team in the Department of Biological Sciences and the Biomolecular Research Program to stop the spread of breast cancer. Their research has found that an overabundance of inflammatory cytokines (proteins
made by cells in the immune system that help create inflammation as a way to fight infection) may be one of the means by which breast cancer cells detach from the tumor and move through the bloodstream to other organs. Their very promising research will continue to need new funding.

While initial grants given to Dr. Jorcyk and her team came from the American Cancer Society and the Susan G. Komen Foundation, larger grants from the National Institutes of Health (NIH) will be needed to complete the study.

Knowing that government funding for NIH needs congressional approval, Lindsay forwarded me a letter from the Metastatic Breast Cancer Network encouraging people to write
their lawmakers. I did just that and received a letter back from Idaho Sen. Mike Crapo. Here is a portion of his response: “Thank you for contacting me with your support regarding funding
for the National Institutes of Health (NIH). I appreciate hearing from you and welcome the opportunity to respond to your request.

“I extend my sincere condolences at the loss of your friends to breast cancer. More must be done to combat this deadly disease. The issue of cancer research and treatment is very important and personal to me.”

He went on to describe his personal battle with prostate cancer and his proactive steps to stay
healthy. His letter continued, “You may be interested to know that I signed a letter with Senator Robert Casey (D-Penn.) and Senator Richard Burr (R-N.C.) to the Senate Appropriations
Committee. The letter requested continued support and funding to the NIH in Fiscal Year (FY) 2015.”

I applaud Sen. Crapo for his attention and compassion.

EFFECTIVE DRUGS COME WITH STEEP PRICE

In September, the Swiss pharmaceutical company Roche reported successful clinical trials on a drug called Perjeta. When taken by MBC patients, their life expectancy rose an unprecedented
16 months longer than those in the control group who did not take the drug. Similar drugs
have increased the lifespan of patients with metastatic cancer by just a few months. While already approved by the Food and Drug Administration for use in the United States, only half of
the patients eligible for Perjeta are currently being treated with it. Usually this comes down to ability to pay. Perjeta is taken alongside the drug Herceptin, and together they cost more than $11,000 a month.

In a piece that “60 Minutes” recently did on the cost of cancer drugs, Lesley Stahl interviewed Dr. Leonard Saltz from the Memorial Sloan Kettering Cancer Center. Stahl asked him if the costs of the medicine should be treated as another cancer side effect. He responded, “I think that’s a
fair way of looking at it. We’re starting to see the term ‘financial toxicity’ being used in the literature. Individual patients are going into bankruptcy trying to deal with these prices.”

Later in the program, Hagop Kantargian of the MD Anderson Cancer Center added this comment to the discussion: “They (the pharmaceutical industry) are making prices unreasonable, unsustainable and, in my opinion, immoral.”

‘JUST DO’

As I sat beside Trina on her bed for my last visit with her, she sat up and hugged me. I was amazed at her tenacity. She was supposed to be on her deathbed but she was still joking with
her friends, not letting us speak with any words of sorrow or regret. She wasn’t afraid to die. She had a lot of confidence in her husband; her only concern was leaving her 10-year-old son.

In our article last year, we wrote a list of ideas for best supporting friends and family with MBC. This year, Trina had one more suggestion to add to that list. Every time one of her friends would offer a meal for her family, a playdate for her son, a suggestion for her celebration of life party, or any other offer for after she was gone, she would just look at them and say, “Just do.”

She didn’t want to listen to good intentions that may not go anywhere. She didn’t have the time or the breath for those unnecessary conversations. She simply wanted people to responsibly take action to join in the fight against this disease. It was her dying wish and will
be her lasting legacy.

It is by taking real action, not our wearing of pink, that will make a difference — just doing is what will make our MBC friends feel understood; just doing is what will create the freedom and opportunity for all breast cancer patients to share their stories; just doing is what will fund the research to keep breast cancer from spreading; just doing is what will motivate our lawmakers;
just doing is what will give accountability to pharmaceutical companies; and it is just doing that will keep Lindsay on her paddleboard and skis for many more seasons to come.

Writer and photographer Chad Estes lives in Boise. Chad can be contacted at chadestes@email.com or through his website, revealmission.org.