Metastatic Breast Cancer Awareness Day – Every Day and every October 13

MetsDay13We all know that October is Breast Cancer Awareness month. There’s pink everywhere and all sorts of breast cancer awareness campaigns. In 2009 Metastatic Breast Cancer (MBC) got one day for awareness. Thanks to the efforts of 9 metastatic patients and countless others, they got congress to designate October 13th as Metastatic Breast Cancer Awareness Day.  It’s a start. “Breast Cancer Awareness” without “Mets Awareness” is not awareness at all. Now we need everyone to be aware of MBC all year-long. Every day should be Metastatic Breast Cancer Day.

Ribbon_whitelinedpinkwashingpicEspecially in October (Breast Cancer Awareness Month) there have been lots of questioning of the words, the color and what really matters. There’s frustration in the breast cancer community because breast cancer has been painted with survivors and death rates trending in a favorable direction. Sadly when it comes to MBC and death rates we haven’t come very far.

For example in the United States alone in 1991 there were about 112 deaths from breast cancer a day. This year there are about 108 deaths a day in the US. While those 4 lives a day are very important people I don’t think that in over 20 years preventing 4 deaths a day is tremendous progress in this country. There are about 155,000 people living with MBC in the US a year. There are almost 40,000 deaths a year from MBC in the US and around 400 of these deaths are men.

545527_494545153891973_631458727_aAlmost 30% of all breast cancers become metastatic. Some start out with “mets” (about 6-10% of cases) but if you get breast cancer at an earlier stage there’s up to a 30% chance that you will become metastatic. Those who have MBC know this. We still don’t know the cause of many breast cancers and we also don’t know why breast cancer patients become metastatic.

MBC_Infographic_01_v14There is no cure for MBC. There are many drugs that can extend lives for years, but treatment is life long switching from drugs that work for a period of time until a drug no longer works. Every case is different and there are different types with some types more difficult to treat than others.

What we do know is that MBC kills very special people. When it comes to breast cancer, people’s stories paint the picture of what happens with this disease. One of them was my fearless friend Li Bailey. In our world of social media very few people knew her. She didn’t have a blog, Facebook page or Twitter account. She had Triple Negative (TNBC) MBC and there were fewer options for her treatment. She knew every detail of her case, and was a very sharp ePatient.

Li and I went through our primary chemo together at the same time. We got together a lot as friends and it was a relief that I wasn’t bald alone. We learned so much about breast cancer together. I had a local recurrence. Today I am NED (no evidence of disease). She had a mets recurrence on her birthday, February 19, 2009. She danced in to the light on January 6, 2012. She went through various treatment options that were wonderful when they worked. Having to change regimens is a harsh reality for anyone with mets. While my friend did not live as long as I would have liked with mets, there are so many cases with different outcomes. I have lots of friends that respond longer to treatments who are living with mets for a very long time.

Li had a wonderful ability of living in the moment with me on a great day. I’m not saying there weren’t some bad ones but we made a pact that on great ones we would be in the moment.

IMG_3171IMG_5232One of the best days was when Li got her dog Shelby as a puppy after we finished our primary chemo. I am so grateful that she chose me to take care of her dog. I loved visiting her and Shelby so many times. Shelby helps me every day keeping memories of Li alive. She is such a wonderful gift. I know Li would be proud of how well Shelby is doing, while she is a constant source of joy in my life.

There’s not a day that goes by that I don’t think of Li and all my mets sisters living and dying from MBC. I was very lucky that Li let me in to her life with mets and accepted my help. It’s so rewarding to able to help. Li helped me a lot too. She never missed being with me for my many surgeries and I was with her for hers. Having one day for MBC awareness is a start, but we have a long way to go and there should be many more days of awareness for MBC. As patient advocates we have to make metastatic research a priority. We must stop this terrible disease and prevent it from spreading to other organs. This research will hopefully lead to helping end all cancers.

Marketing Breast Cancer at a Funeral Parlor-Don’t come to my Pink Funeral!

      I saw the article below in the Cleveland Daily Banner as I was  preparing my daily breast cancer articles. I almost jumped out of my chair. I put it in my daily Scoop It Breast Cancer Newspaper and sent notes on Twitter to friends because I was really shocked at what I was reading.  My friend AnneMarie blogged about it in her blog called CHEMOBRAIN…..In The Fog With AM from BC 2 AD , and as I was commenting on her blog I wanted to put the picture of the pink casket to show how ridiculous this is and I realized the best way to get my point across was to write about it here. I couldn’t believe they were serious. So now funeral parlors want to get involved in marketing breast cancer. Do they expect people will use their funeral home because they will wear the new pink blazers during a funeral?
     Casketopen Soft Pink-2 I am pretty patient about some of the “pinkwashing” that has happened when it comes to breast cancer but this borders on clearly absurd. Pinkwashing is the act of using breast cancer to guilt consumers into buying a product which often times adds to being the cause of breast cancer, or if it had not been for the advent of aiding the cure for breast cancer, they would not have bought the product. I have always loved the color pink, but pink at a funeral is just DEAD WRONG! Do they expect people will use their funeral homes because they will wear the new pink blazers during a funeral?
      This is so ridiculous that either I get very upset or I just laugh. As my mom always says “Laughing is better than crying.” The fact that this funeral home sees this as a fantastic way to market themselves shows they are really missing the message when it comes to how horrible dying from breast cancer really is.
      I just think if companies sincerely want to see an end to people dying from breast cancer, they need to think about what message they are sending. Yesterday I wrote “In the world every 23 seconds someone gets breast cancer and every 69 seconds someone dies from breast cancer.”

This is not an invitation for funeral homes to start celebrating how many more plots and caskets as well as pink blazers they can sell by saying they are going to help breast cancer awareness and give 12% of the pink blazer’s sales to the cause. They said they wanted to give $25,000 to the American Cancer Society for Breast Cancer Research. Since we know that only 2% of all funds that go to research for breast cancer actually goes to the research that causes deaths from breast cancer, their help isn’t even going to make a dent on preventing deaths from breast cancer. To me their marketing message is to have more deaths from breast cancer and they will be happy to have your funeral business. This is crazy!

Excerpts from: Pink Blazers are the new black for Funeral Homes

by DELANEY WALKER, Banner Staff Writer
RALPH BUCKNER FUNERAL HOME services have widened to include pink blazers. Families can request the staff wear these blazers to honor loved ones whose death or life was associated with breast cancer. From left are Ryan Qualls, Joe Collins, Jim Gold, Tom Cloud, Don Brown, Don Akins and Tucker Johnston, with Ralph Buckner Jr. seated in front. Submitted photo.

RALPH BUCKNER FUNERAL HOME services have widened to include pink blazers. Families can request the staff wear these blazers to honor loved ones whose death or life was associated with breast cancer.
Funeral homes across the nation and in Cleveland’s city limits are finally receiving the breast cancer awareness memo: Pink is the new black.

These blazers are currently being sold to funeral homes across the country. The founders felt it would be a good outlet for families to honor loved ones who were involved with breast cancer. This includes survivors, victims and supporters.
Further plans for the pink blazers are currently in the works. John Yopp said the opportunities outside the funeral industry are endless.