Metastatic Breast Cancer Awareness Day

Hello My Friends,

As some of you may have heard, October is Breast Cancer Awareness Month (note my sarcasm). As we've all shared, we metsters often feel excluded from all the pink ribboned feel good stuff. Many don't consider us who are still in the mosh pit wrestling the alligator survivors...and if we're not survivors, show me WHO is!

I've never been one to sit on my laurels...rather than whining and complaining, why not make a difference? That is why I am asking ALL of you to help have October 13th declared Metastatic Breast Cancer Awareness Day. If you log onto the web site for the Metastatic Breast Cancer Network (www.mbcnetwork.org), you can check out all of the cities and towns who have already signed up to proclaim October 13th 'our' day. I recently approached the Legislature of Suffolk County, New York and am proud to announce that ON October 13th a Resolution will be passed proclaiming Metastatic Breast Cancer Day in Suffolk County--and not just for 2009, but for every year thereafter! If any of you are close to Hauppauge, Long Island, let me know and you can join me at this monumental event.

One thing almost all of us can do no matter how crappy we feel is write a letter, or ask a friend or relative to write one on our behalf. If you need some help, both MBCN or I personally would be happy to help you. I now have several relatives throughout the country working on their local politicians. And as each small ripple travels on, we slowly but surely educate the population about our plight...and we let them know that we need them to fight for the development of treatments that extend lives while the search for the cure continues!

As I've mentioned before, it seems to me that if there are four stages of cancer, and four months in October, we should get a whole week instead of a month...but that will be my next project. Please send out at least one letter asking for a Proclamation or Resolution declaring October 13th Metastatic Breast Cancer Awareness Day. It will make you feel good! Why be a victim when you can be a super hero?

((hugs))
Colleen

By chainsawz
Posted September 16, 2009 at 6:44 pm
Report post

Colleen - you are so awesome!! I will definitely do my part.

Today, I went to the breast cancer site online to do my daily click to fund free mammograms for women. Each day they have a different survivor story. The blurb today which is still posted (http://www.thebreastcancersite.com/clickToGive/home.faces?siteId=2) is a story from Jeannie of Holbrook, NY. Part of this reads "breast cancer decided to come pay me a visit. My family flew in from across the country and I went in for a double mastectomy. My lymph nodes were negative, so I can now focus on my reconstruction and taking care of my son. "

I can't tell you how many stories I've read of stage IV BC women with clear nodes...negative nodes do not mean you are free and clear. There is NO CURE FOR CANCER! It can also travel via the blood. We need to be more vocal and let people know we are here and need research. Many of those early stagers will wind up in our club, so prevention shouldn't be the sole focus. Especially since early detection doesn't seem to help everyone with BC.

Thanks for being the champion for us and inspiring me to holler....we are here - find a cure!! lisa

By Deanie
Posted September 16, 2009 at 7:18 pm
Report post

Colleen and Lisa, "Amen" and "Amen" again. I will also work to get participation/lobbying by any organizations I belong to.

Also, the 2009 Illinois proclamation has excellent talking points.

By sr2603
Posted September 17, 2009 at 8:21 am
Report post

Count me in. I will source out my local politician.

I sincerely hope that some of the millions of dollars which the American Cancer Society gets each year goes into research for us Metavivors. We need all the help we can get. Particularly Triple negative which I am

Keep up the good work raising awareness.

By blanche149
Posted September 17, 2009 at 11:43 am
Report post

I tried to follow your link to mbcn.org and it came up as a website that is up for sale. I googled it, and the actual site is www.mbcnetwork.org
I'm amazed to see how many cities and states have proclaimed MBC Awareness Day in 2007 and 2008, but very few have done so yet for 2009. Do we have to push every year to get the proclamation?

By Beachbabe
Posted September 17, 2009 at 6:38 pm
Report post

Ellen at MBCN (so sorry I messed up the site address!) says the proclamation I was able to get is the first one that proclaimed October 13th this year AND EVERY YEAR THEREAFTER as MBCAD (too much to type out)...so ASK for it when you send out the request. Good luck ladies, we totally rock!

By jaf
Posted September 17, 2009 at 7:55 pm
Report post

Beachbabe, after reading your request I immediately sat down and wrote to the Governor of Michigan, Jennifer Granholm. I did see where this date was dedicated in 2008 but not so far not in 2009. I hope that my letter does not land on deaf ears and if I don't hear from her in a few days, I will sit back down and get another letter out to her. This is for all of us and for those who will follow unfortunately.

Thanks for being such a good advocate for us.

By frannyv
Posted September 18, 2009 at 12:46 pm
Report post

Ladies,
I too share the thought that those of us with stage IV are shoved in the closet during breast cancer awareness month, where they are promoting only survivors that are cancer free. Back in may I received an email fro Komen MD, asking for my cancer story.(my daughter has walked twice in the Komen walk, and dedicated it to me, raising money)
I gave them a brief story and recently got a call from them that they posted my story on their website and asked for a picture. You can go on the Komen MD website and read my story.(no picture yet) It is called "Things I'd Like to Say" It gave me hope that maybe we can be recognized and that more money can be put into help those of us with Stage IV. I will be writing my local legislator about Oct 13!

http://www.komenmd.org/site/c.ddJIKPNnFkG/b.5219749/k.D624/Stories.htm

By chloemom
Posted September 19, 2009 at 7:11 am
Report post

Having Metastatic BC Awareness Day is a wonderful thing for us to focus on. I agree with you BB, an entire
week would be better!!!!

I know that many of you, me included, don't appreciate all the pinking of breast cancer, especially in October and especially as a Marketing Tool!!!

So Another great site for us to utilize, www.thinkbeforeyoupink.org
(thanks again Rene!!)

No matter how much energy we have, this site allows us to participate in advocacy issues with the click of a mouse.

You can find out about those pink products and just how much money is really generated or donated and how much the company actually gets or advocates for
real change.

An example of the great work we can all be a part of is:
This spring an advocacy project from this group got
Yoplait Yogurt to commit to using only milk products that do NOT contain hormones and other additives .... additives that have been connected to BC for years. Yoplait has been pinking up in October for a long time while still selling products with known carcinogens and donating very little of the $ made from the campaign.

How many BIG Pink sponsor companies sell products that still contain KNOWN cancer causing ingredients?
Doesn't make sense to me.

I have passed this site to people in my life who were buying everything pink, thinking that was helping me, or who participate in the pink activities in my honor.
I don't lecture or tell them not to, I thank them because I know they are trying to do something to help. Many people, after reading some of the info on the Think Before you Pink site become more intentional in their
thinking .... just like we do!

Thanks for your link too Lisa, I was doing this too and over the course of the summer, I had forgotten it. AND You are absolutely right about our thinking Stage 1 no node involvement means cure ... I thought so for 4 years and was encouraged to think that way!! Surprise. Stage IV since April 2007, still no lymph involvement!!

Anyone else found a site that we can easily use to advocate from home, from our computer, that de-pinks some of the activities coming up and focuses on Mets? Please feel free to add it to this discussion!

By EHM
Posted September 21, 2009 at 6:47 am
Report post

great going!! It takes about a month to actually get the proclamation in hand - that is why there are at this time so few proclamations posted at www.mbcnetwork.org for 2009. They will come in .... there are people across the country who have contacted their mayors or governors to request this proclamation. and Colleen got the entire Suffolk county on Long Island to declare the day... forever!!

If you need help in drafting your letter or sending them a sample proclamation, contact getinvolved.mbcnet@gmail.com ... and Elly, our awareness day volunteer, will email you what you need. You are so right... we need to have our voices heard. Together we can do it!!

By maryk58
Posted September 21, 2009 at 7:20 pm
Report post

I went to the website and requested a t-shirt so that I can proudly display MBCA day here on this campus of 60,000 in southern CA. /Quick response, shirt is on its way. Not many events planned here, so baby steps. I'm going to approach my cancer center about sponsoring a workshop or speaker to raise awareness. We may be stage IV (ivy?) but we're still increasing in survivorship every day!!

By maryk58
Posted September 23, 2009 at 12:46 am
Report post

www.mbcnetwork.org
click on get involved at top of page
scroll down to be visible or something like that and send an email. I just told them that I wanted to wear the shirt on mbcn day to promote it at work - university with 60,000 population and that I was going to talk to my cancer center folks about some workshops or promos. They emailed back right away saying shirt was on the way

By CSF
Posted September 27, 2009 at 4:05 pm
Report post

Colleen-
I sent letters and sample proclamations to both New Milford Ct and Sherman Ct with no responses. My follow-up calls and emails have gone unanswered.
Any ideas how to get on their radar?
BTW - I LOVE your new pic! Very nice.
:)

By Beachbabe
Posted September 27, 2009 at 4:34 pm
Report post

It's better if you call the office and speak to a real, live person. Explain the situation, and what you're trying to do. Once you've got a 'buddy', they will help to make sure your letter (best if you can fax it to that person, your new friend) actually gets read. Hang in there, and thanks for the photo compliment--it's me in my natural habitat ;)

By CSF
Posted September 27, 2009 at 5:50 pm
Report post

New Milford just has an answering machine for their mayor's office and they aren't returning my calls.
Sherman does not have a mayor, but a selectman and also does not have a published phone number at all that I have been able to find. The town has a small population under 3,000 however, so it was a shot in the dark there.
I was thinking more of "back-door" ways to get through.
I'll keep trying though!!
I'm so happy you had such success in LI!!
:)

By Deanie
Posted September 27, 2009 at 7:15 pm
Report post

CSF, try having an "influential" church or hospital advocate for you. It is indirect but both usually can get responses from governmental agencies/personnel.

By EHM
Posted September 28, 2009 at 5:36 pm
Report post

YOUR HELP IS NEEDED TO GET THE NATIONAL RESOLUTION!

To make the day NATIONAL, we are asking you to contact your Congressperson and say you would be thrilled if he or she would co-sponsor the resolution. To find out who your Congressperson is, use the following link.http://www.house.gov/zip/ZIP2Rep.html Fill in the information about your zip code and go to the website. Get the phone number and call. (If you prefer, you can email.) .

A sample script is included below. Please note that the contact information at the end for Rep. DeLauro and Rep. LoBiondo is just for congresspeople and they will understand it. Just repeat it as is. Please feel free to pass this request along to friends and family. And..we are trying to get the calls done by Tuesday.

We thank you so much for doing this and we know that by working together we WILL make a difference. If you have any questions, please contact Susan Davis at susand1006@aol.com.

Best,
Susan Davis
Chair, Public Policy.
Metastatic Breast Cancer Network
www.mbcnetwork.org

SAMPLE SCRIPT

Please say something like the following--or email the following:

Good afternoon, my name is ___________, and I live in ___. I have metastatic breast cancer. (Or say, my wife
has mets, or my friend, or my friend passed away; tell your relation to metastatic breast cancer.) This the kind of breast cancer that has already spread. The 155,000 Americans living with this disease want to raise awareness about this type of breast cancer and get the services and treatments we need to extend our lives. That's why making October 13 Metastatic Awareness Day is so important.

I am calling to ask my Congressman to support this resolution as a cosponsor. To become a cosponsor or for more information, Congresspeople should contact Meghan Whealan (for Rep.DeLauro) at 5-3661 or meghan.whealan@mail.house.gov or Dana Richter (for Rep. LoBiondo) at 5-6572 or dana.richter@mail.house.gov.

Thank you!!

Welcome to Inspire!

Explore topics in this discussion:

19 replies

Add to the discussion

Group leaders

You