Beyond Pink

September 17, 2012

reprinted by permission of the author from http://occupyhealthcare.net/2012/09/beyond-pink/

By Laura Wells, Stage IV Metastatic Breast Cancer Fighter, written  in honor of the women who are fighting and the women we are losing.

When I was first diagnosed with breast cancer, I found it hard to embrace the “Pink Ribbon” and all it stood for. I was not happy to be joining the club, but I was also uncomfortable with becoming an instant advocate for a cause, simply because I would now benefit from it. It seemed selfish and hypocritical.

I began to truly identify with “Pink,” when I recurred at stage IV, for I would have breast cancer forever, be in treatment for life. I finally, fully embraced “pink.”

Ironically, with advanced, metastatic disease, all the great things “pink” stood for, no longer applied to me. I was beyond “prevention,” beyond “cure,” beyond “survivorship,” beyond “pink.”

I learned that many women feel left out, each October, during National Breast Cancer Awareness Month, knowing our stories will not be told. No one will hear of the stage IV women who had died that year, except perhaps, the rare celebrity, or as a matter of statistics.

But, the average metastatic woman will be nowhere. There will be no article about her in the newspaper, no story on the news. There will be no TV special, introducing the world to a lifetime patient, who gets up every day, facing constant tests and treatment forever. We will not hear of the fear that an aching back means bone involvement, which causes a woman to start literally breaking, or the worry that a headache may be caused by brain involvement, and not merely stress. There will be no speakers, at the numerous awareness walks, to tell about conversations with their children, which begin with, “Will you still be here when…?”

The stories will be of “survivors”, women diagnosed “early”, and “cured”. We will hear about famous women who fought the earliest stage cancers and SURVIVED. And the speakers at the walks will promote awareness, and prevention, and survivorship.

I understand the need for this cheerfulness, and these stories of survivorship. I know how important, how necessary it is to be told that, especially in your case, there is hope for a cure.

But, I am beyond that definition of hope. My hope is for clean scans, and new treatments that work so well, I am still alive to attend my daughters’ weddings and meet my grandchildren. I hope to put off as long as possible, leaving behind a husband, who is grieving the loss of his wife.

My breast cancer is no longer just pink. It now, includes gray, the color of nothing – the nowhere land where I live, no longer a survivor, but a fighter, never giving in, never giving up. And, black, the color of death, for surely, one day, my fight will end.

And the problem with “pink” is simply that, with all the awareness it generates, no one is aware of stage IV cancer, the cancer that kills. And no one is prepared to join this club, which is beyond pink, because it will not be spoken of, for yet another year.

Laura Wells lives in Costa Mesa, CA, with her husband and two of her three daughters. She is writing a book about her experiences with metastatic disease and working to raise awareness of the unique needs of metastatic breast cancer patients. She blogs at http://www.Mystage4life.blogspot.com.

Advertisements

Houston, we have a problem: One woman’s mission for MBCAwareness Day

September 13, 2012

Theresa Tee Palomares is a bundle of energy, a woman on a mission to raise awareness of metastatic breast cancer. She looked at her own community of Houston and noticed there was a problem. Most people do not know about metastatic breast cancer (also called Stage IV) or about October 13 being designated as Metastatic Breast Cancer Awareness Day.  She immediately took action,  found the mayor’s address on the City of Houston website and sent her this letter:
Dear Mayor Annise Parker:

In supporting the month of September with the Teal colors for Ovarian Cancer Awareness and you will probably follow suit with Pink in
October for Breast Cancer Awareness, were you aware that there is one day which is given for Stage IV Breast Cancer women and men-yes, only one day!

Can you please change the lights on that day for us? Maybe Pink and Black or just Black because society has swept us under the rug-you see, less than 3% of Komen funds are given for Stage 4 Metastatic Breast Cancer, the rest is earmarked for awareness, prevention and “PINK” advocacy, but what about us? Please follow this link http://mbcn.org/developing-awareness/category/house-resolution-senate-resolution/#senate  to the MBCN.org website. This is the Senate Resolution enacted in 2009, designating October 13, as National Metastatic Breast Cancer Awareness Day!

Please take the time to support this as 40,000 women and men are dying each year with no cure in sight-no cure at least for the Stage 4 community.

Thank you for your support.

The mayor’s team was very responsive and things moved quickly and smoothly, with only a few small glitches. The City of Houston would only consider a request from a non-profit group and not an individual.  They wanted to know what colors to use. Theresa wasn’t sure that turning off the lights completely would get enough attention, so she worked with our sister organization, Metavivor, and decided to light up Houston with the Metavivor colors of teal, green and pink. October 13 was not available, but the 14th and 15th were open. (Apparently there are many, many organizations that request lighting to symbolize their causes.)

Theresa was not deterred and is now planning on being at City Hall on October 13, 14 and 15, camcorder in hand, discussing metastatic disease with passers-by and distributing MBCN pamphlets and copies of the 2009 Senate Resolution for October 13. “I’ll just tell everyone we’re so pushed into the shadows that we couldn’t even get recognition on our one day – October 13,” she quipped.

Theresa invites all Houston area metastatic patients and supporters to come out and join her at City Hall each evening the weekend of October 13-14-15. You can email her at: theresa.palomares@facebook.com

When asked what she would advise others who want to follow her lead, Theresa said to start in your own community or state.

“If Houston— a large metropolis of over 2 million citywide, 4 million county wide with one of the largest medical centers in the United States —was not aware of October 13th, how many more cities and towns are not aware? ONE PERSON can make a difference, so please be that one person to light the fire.”

Email your mayor, suggest changing the lighting if they use it or suggest passing a resolution to honor October 13 as Metastatic Breast Cancer Awareness Day. If the community has a program on breast cancer, ask to participate in it, and use your voice to educate people about metastatic disease. Email us at mbcn@mbcn.org and we can answer your questions and supply pamphlets, t shirts and information. For other suggestions see our MBCA advocacy kit.

Thanks, Theresa!


A husband’s eloquent letter to the editor for Metastatic Breast Cancer Awareness Day

September 12, 2012

Judith Christensen and her husband William travelled to Washington DC in 2009 with the MBCN team to lobby Congress for the first National Metastatic Breast Cancer Awareness Day. And, they continue to advocate for greater awareness and understanding of metastatic disease. Judith shared this letter that her husband just sent to their local newspaper–a heartfelt statement of the reality and needs of the metastatic community from a concerned husband. (Doesn’t get any better than that!)

Dear Editor:

I read your column about featuring stories dealing with breast cancer in your newspapers during the upcoming breast cancer awareness month. As you noted most people know someone who has been affected by breast cancer. They certainly are already aware of breast cancer. One in eight women (and a not an insignificant number of men) will be diagnosed with breast cancer. 30% of that group at some point will have to deal with breast cancer that has metastasized. That is the real killer. Cancer in the breast is not lethal; it is when it works its way to other parts of the body (liver, brain, bones), that it becomes fatal.

My wife, Judith, has lived with metastatic breast cancer since her initial diagnosis almost 8 years ago. She is being treated at Dana Farber, participating in a clinical trial for almost 7 years. She is fortunately a statistical outlier since life expectancy averages about two and a half years post metastatic diagnosis. She, like all those with metastatic disease, will be on one form of treatment or another for the rest of her life. There is no time free from treatment. There is no cure.

In 2009 we worked with others in the metastatic breast cancer community to raise awareness about this dark corner of the larger breast cancer community. Working with members of congress we were able to have October 13 designated as National Metastatic Breast Cancer Awareness Day. I have attached a copy of the Resolution as passed by the United States Senate for your information and use. Many state and local governments (including here in Plymouth) passed similar resolutions.

It is so important that this group of people dealing with metastatic disease not be isolated or ignored. Additional research funding and funding for treatment should be focused on the needs of this group. A lot has been done to raise awareness of breast cancer in the broadest sense. More needs to be done to deal with the deadly and fatal side of the disease. I would urge you to focus some of your efforts on raising awareness about metastatic breast cancer during the month of October. It is a job that needs doing.

Thank you for focusing on the issue of breast cancer. Please take it a step further and deal with this critically important issue as well.

William Christensen
26 Forest Edge
Plymouth, MA 02360
(508) 209-1011
thechristensens26@comcast.net


I have a confession to make…

June 26, 2012

I have a confession to make. Before I was diagnosed with metastatic breast cancer, I would hear that someone in my community had died from breast cancer and I would think: “It’s too bad they didn’t  get annual mammograms. It’s too bad they ignored early detection practices. It’s too bad they died, but it’s really their own fault.”

I was diagnosed in 1992 with early stage cancer–stage 0 or DCIS–the earliest you can have. I had a simple mastectomy, which was considered a 100% cure, and breast reconstruction. I continued on with my life, without worrying too much about breast cancer. I never embraced the pink survivor label because I never felt I had gone through that much–no chemo, no radiation, just some disfiguring surgery followed by a saline implant, which was supposed to simulate a real breast.

I continued for 17 years with annual mammograms, 17 years of breast self exams, 17 years of  annual checkups and then I was diagnosed with advanced breast cancer with metastases to the bone–stage IV–treatable but no longer curable. I was no longer the poster girl for early detection, because this time early detection had failed me.

Like many in our pink-drenched communities, I had accepted the message that early detection was the cure and that mammograms were a failproof screening test. My education in breast cancer began the day I was diagnosed with mets and I learned that mammograms are a good tool, but less effective when the woman is young and premenopausal; less effective for women with denser breast tissue; less effective at identifying aggressive cancers; susceptible to many false positives (identifying suspicious areas which turn out to be cysts or other normal anomalies); and unable to predict whether the cancers that are identified will go on to be deadly or will proceed in an indolent and unthreatening growth cycle, better left alone.

The message promoted by many breast cancer organizations is one of positivity, survivorship and fighting and winning. So the actual capabilities of a screening tool have been exaggerated and early detection has become synonymous with “the cure”.

When life throws us some crisis, most people like to see it as a challenge and find meaning in their travails. We are by nature optimists, so if you lose your job, you will find another and maybe a better one or in a different field than you had worked previously and never would have explored without the rude shove out the door. The same happens with disease. Testimonials abound from some that they are better people than they would have been without the heart attack, the cancer, the terrible car accident.  They realized their life had the wrong priorities, that they weren’t appreciating every single day. And people do change. They meditate, they volunteer, they mend bad relationships. While I acknowledge that can happen, I never want to characterize cancer as a gift. I don’t think I need to endure treatments and side effects the rest of my life just to be a better person.

But I’d like to believe that I have stage IV metastatic breast cancer for a reason:  to speak out about it, to educate people, to fill in the missing gaps in the breast cancer awareness messages, to dispel the “guilt” myth, that this cancer is my own fault, that I failed to eat right, think positively, live well.

October 13 is Metastatic Breast Cancer Awareness Day–one day in Pinktober that Metastatic Breast Cancer Network lobbied Congress for in 2009. One day to talk about the ugliness and deadliness of breast cancer, but also the promise and hope of 155,000 or more living with the disease in the US, struggling to live every day well, waiting for the next treatment to extend our lives a few months longer, hoping for a cure to finally stop metastases from occurring.

I have a confession to make. I have metastatic breast cancer and 40,000 women and men dying every year from breast cancer is unacceptable. It’s too bad that the breast cancer message has been skewed. It’s too bad that few know that an estimated 25-30% of survivors will become metastatic. It’s too bad that there is not enough money going to co-ordinated, effective research on metastases.

It’s not too early to start thinking about October. I’ll be writing letters, lobbying the media, working to get the message out. What will you be doing?

Ginny