It's almost over...and yet it has only just begun

Thank goodness....October is almost over.  With it's barrage of pink...buy this....buy that...and we'll help cure cancer.  I know...I've talked about how jaded I've become.  I feel that after more than 20 years, we should be farther along with this....and while the trials for breast cancer drugs are done on advanced cancer cases....very few trials are actually looking at what can defeat cancer which has metastasized.

This time of year...as well as around mother's day, all the television celebrities come out and tell their stories....this year was no different.  I watched Hoda Kotb talk about being saved....and I wrote on the Today Show with Kathy Lee and Hoda Kotb's facebook page asking her to not forget us....the MBC'ers.  I also pointed out that many of those stage I and stage 0 cancer survivors would find that it had returned....many as stage IV, many after that magical date of five years out.  I asked that she would look at us and allow us to have a voice.
   

I doubt it will make a difference.  I doubt many people saw and thought about what I said.

I probably shouldn't have written about this....I know that it makes many survivors and their families sad.  We don't want to remember the rather dire statistics.  For a little while...it would be nice to live in denial.  But, we are surrounded with pink....Just like my daughter and I were in this photo....Fortunately, soon, after the stuff has landed in the clearance bins...we may just not have to have it in our faces anymore.

In the meantime, run over to the Metastatic Breast Cancer site....they are extending their campaign until November 30....for ever click to the website, for every share and tweet, $1 will be donated to MBC. Yah.  Now that's the way to do it!  The Elephant in the Pink Metastatic Breast Cancer

Coming unhinged

Earlier this week, I got an email from someone who had just been diagnosed with metastatic Breast cancer.  She was asking me what I did, how I handled it.  

I think I have actually posted on this before, but it is worth repeating here.  Although I responded to her about finding out about MBC, it could just as easily be something else...or even the stress and anxiety we feel when we get ready for a scan.  Here's what I told her:

Take a deep breath.  I cried.  a lot.  I had a 4 year old daughter for heaven sakes.  I was terrified....then I decided that most people who got this news were probably not as healthy as I was , and most were not as young.....and if I were a betting person, I would bet on me.  10% survived, and that was an average, so I decided I would do what I had to and that I would beat it.  

Be with friends,  pray of you are a praying sort, and do what you can to help your body defeat it....get sleep, eat well and exercise as you are able.   Get with a support group and certainly keep on calling out to your other stage 4 peeps.....we know what it is like....most people don't.  

Remember, this is a process, and you will work through it.  Let yourself grieve.  Let yourself get 

angry....and take care of yourself.

That is the best I can offer.  It does get easier, and sometime you are doing well and then the feelings and fear smack you....but, take one day at a time, don't look down the road as all you will be doing is making a fantasy of fear ( unless of course, you are seeing yourself as very healthy, but stay away from the accepted prognosis), and doing what my mom always called borrowing trouble.  

I still stand by this advice.....We do go through this as a process....we grow, even in the face of death.  We come to new realizations and understandings.  We have an unwelcome companion by our side, but it is possible to learn to walk with him and accept, maybe begrudgingly, that he is there.  Sometimes it can even produce some interesting conversations. 

An Answer to Pinktober

A couple of weeks ago, I took my husband to the airport at 5:00 am.  I was stunned to see this pink lighted control tower....done in recognition of Breast Cancer Awareness Month.  My response? YOU HAVE TO BE FRIGGING KIDDING ME!  Does this pink phallic symbol have ANYTHING to do to HELP those of us who have been stricken? Does it really do anything to help "breast cancer awareness?"

I have to admit, some of us are getting a little bit militant about this.  Me included.  After 20 years of "breast cancer awareness" don't you think we ARE aware?  While strides have been made, those of us who have metastatic breast cancer (MBC or stage IV breast cancer where it has attacked a site outside of the breast of the lymph nodes) are largely ignored by the pink tide.  For most people, they have no clue.

Yes, catching breast cancer early does help...but 25-30% of those diagnosed with breast cancer will have a recurrence, quite a few of those early breast cancer diagnoses will have it return as a stage IV cancer.  In all the funds raised for breast cancer awareness only 5% of the funds go to study MBC.  Over 40,000 people (MEN and women) die of breast cancer each year...Yet....it often seems like in the pink hoop-de-la, we're forgotten.  I am aware...and I have a second recurrence of mets to the bone...this time in many areas.

For a lot of people who were diagnosed with MBC, talking about it is scary.  Those of us putting out the numbers are putting out a lot of scary information.  Yes, it IS scary.  But we have to talk about it.  It was only through the promotion of various organizations, the Pink Ribbon project and Susan G. Komen that we have brought the fight to the stage we have....it is rare these days for a woman to go in for a biopsy and come out without a breast like Nancy Reagan did, and that's a good thing.   But we need to do more.

Nancy's Point did a really good post on why it is important to talk about it and to remind people that there are those of us who are literally fighting for our lives.  Take a look at her blog post here  In addition, there is a great website for those of us who have it, Metavivor.org.  Their website has a lot of information, but their blog is very useful.

And here is a simple thing....sort of a silly thing....but oh so needed. MBCaware.org has put out a call..if you go to their site, $1 is donated to MBC research; if you share it on Face Book, another $1 is donated...if you tweet or share through other social media, then more money is donated.  So...go here and read more.  I will be very glad you did...and if you share? Well, I'll be happier yet again!