Why some women
with breast cancer dread October
CHICAGO TRIBUNEblbrotman@tribune.com
Twelve thousand women wearing pink T-shirts
participate in the "The Young Ladies" race against breast cancer at
the Le Mans racetrack in western France. (Jean-Francois Monier, Getty-AFP)
'I
feel like I'm the wet dishrag. There's a party, but I'm just a damper on the
party.'
'The pain of October is knowing that you don't
fit in with the predominant happy theme.'
The pink ribbons, pink T-shirts, pink carnations, a pink bra
sculpture — there's pink seemingly everywhere, promoting mammograms, raising
funds and celebrating survivors in October's Breast Cancer Awareness Month.
But there are some people who are not uplifted by the annual
campaign.
Including some who are breast cancer patients.
Not the ones with triumphant stories of finishing treatment with
apparent cures. The ones with metastatic breast cancer — cancer that has
spread, and is incurable.
Their stories are rarely told during Breast Cancer Awareness
Month, said Katherine O'Brien, 48, of La Grange, a board member of the
Metastatic Breast Cancer Network.
They aren't happy stories. People with metastatic breast cancer
spend the rest of their lives, however long they last, undergoing repeated
rounds of treatments and scans. The disease is always on their minds; the
shadow of death is always on the horizon.
And eventually, the shadow falls.
Who wants to hear about that?
"I feel like I'm the wet dishrag," said O'Brien.
"There's a party, but I'm just a damper on the party.
"I'm happy, of course, for people who are doing well and
have finished treatment, but I don't feel like I'm a part of that."
"It's a very solitary feeling," said Rebecca del
Galdo, 46, of Wheaton. "You hear the word 'survivor' and that doesn't
apply to someone with metastatic breast cancer. It's hard, at least for me, to
not take it personally when people say, 'I beat this. I didn't let cancer get
me.'
"I didn't do anything different than anyone else who has
had breast cancer. It's just how it happened in my body. It wasn't that I
didn't eat right or I didn't exercise enough or I was negative."
She is constantly aware of her illness. "I don't think I go
more than five minutes without it at least popping into my head," she
said. "And during this month, it really is everywhere."
October is so hard for many metastatic breast cancer patients
that a New York survivors' group called SHARE is holding a webinar Monday on
"Coping With October" to help them deal with feelings of anger,
isolation and depression.
O'Brien recalls another suggestion.
"Somebody in one group I'm in said, 'Does anyone know
anyone that owns a private island? It would be great! We'll get a nurse and an
oncologist and just stay there until October is over.' "
"The pain of October is knowing that you don't fit in with
the predominant happy theme of what is portrayed normally in the media,"
said Shirley Mertz, 68, president of the Metastatic Breast Cancer Network, who
lives in suburban Chicago.
That happy theme has grated on others, including author Barbara
Ehrenreich, who has written of her own anger at facing the illness amid
"our implacably optimistic breast-cancer culture."
- @franniescarp
The problem with statements such as yours, as mentioned by several in the
article, is the implication that those who died of cancer were somehow
deficient in their fight. No, they were just the unlucky ones, and the
ones who survived happened to have an iteration of the disease...
CHIGIRL72
AT 6:43 AM OCTOBER 07, 2014
Mertz, on the other hand, sees value in the pink movement,
praising it for raising awareness and funds and encouraging celebrations for
ending treatment for early stage cancer.
But she would like more people to be aware of metastatic breast
cancer — although one group in particular, she said, does not want to be.
"We are many times shunned by people who have early stage
disease because metastatic disease makes them uncomfortable," she said.
She understands.
"I didn't want my cancer to come back. I didn't want to
hear about people dying with breast cancer because I thought, 'Oh my gosh, I
could be that person.' So I understand where they're coming from."
For Breast Cancer Awareness Month, and every month, the
Metastatic Breast Cancer Network wants to raise awareness about facts like
these:
•Between 20 percent and 30 percent of people with early stage
breast cancer will develop the metastatic disease.
•-Early detection does not promise a cure. Metastatic breast
cancer can occur five, 10 or 15 years after diagnosis and successful treatment
of early stage breast cancer.
•Though most people will eventually die of the disease, some
people can live with it for many years.
These women encourage people to direct their breast cancer
dollars to research that could help treat or someday cure the metastatic
disease.
And they don't begrudge anyone a pink-themed celebration for
successfully completing treatment for early stage breast cancer.
"I was one of them in 1991," Mertz said.
"I would love to celebrate finishing treatment,"
O'Brien said. "If I could, I'd be out there dancing. But I would try to
have compassion for people who won't finish their treatment."
The project management company where Del Galdo works, which to
her gratitude has rallied around the cause of metastatic breast cancer, will
have a group of employees marching in Chicago's Columbus Day parade and handing
out literature on the disease.
They will be wearing matching Metastatic Breast Cancer Network
T-shirts.
They are purple.
National Metastatic Breast Cancer Awareness Day is Oct. 13. On
Oct 19, the Robert H. Lurie Comprehensive Cancer Center of Northwestern
University and the Metastatic Breast Cancer Network will hold a
meetup on metastatic breast cancer. It is free and open to the public. More
information is at cancer.northwestern.edu/metastatic.
Copyright © 2014, Chicago
Tribune
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