#488 #Stage4Lifer

Let's save her.

Living Beyond Breast Cancer Living Beyond BC has offered a challenge to those of us living with this disease--use social media to tell our stories and educate the public.

It is a simple enough request but where do I begin to share what I have been living with for 27 months six days and seven hours.  Finding joy every day is one way to live, unfortunately this disease never strays far from my mind as I read about one more mets sister entering hospice or failing on another treatment or dying.  We put on a smiling face yet the never ending saga that debilitates us at times continues when we face the reality of it all.

The reality.  It is the fine line of walking between that and hope.  We cling to hope--hope that researchers are frantically searching for a cure and will find it in time; and the reality, well, we are well aware of what happens without a cure.

A cure.  It takes years for researchers to take a drug from the lab to a clinical trial--that's the reality--and I know that my cure may still be sitting in a test tube.  My hope is I will live long enough for it to become a eureka moment for a scientist which translates into an extended lifetime for me.  I cling to that hope.

I also cling to the hope that my efforts and the efforts of other advocates are making sure my daughter and my precious young granddaughter will never have to face this diagnosis.  That is why I keep advocating, keep hollering and screaming for more funding.  Those two cherished humans in my life deserve to have a cancer-free long and glorious life. My mission and my purpose now.

Time is crucial  It seems to be a monumental task to get the public and cancer organizations on board and really, too little time for so many of us; but I will continue to rant and rave until we are handed that golden ticket.

But don't despair because we aren't.  If everyone joins hands with us and supports the organizations who put metastatic research first on their mission to find a cure, we may find out it will be enough time.

To donate and become an advocate, go to my website at www.onewomanmanylakes.org.  Let's make a difference today.

Thanks for reading #488 of 7777.  

#487 The Tux Saga or What Did Rob Do Now?

No pictures of the shoes--ended up in the trash.

The wedding hoopla is over and what a wonderful day it turned out to be.  Our daughter was beautiful and the handsome groom swept her off her feet with love.   After my diagnosis two years ago,  I wasn't sure I would see this day; but there I was reveling in every single moment.

Almost everything went smoothly for the glorious occasion but will share a "Rob" story because he both entertains and exasperates me on any given day.  About two months before the union I reminded him a tux was in order for his only daughter's wedding. Oh no!"my beloved exclaimed, "I already have one in the closet."

 He then proceeded to dig out his twenty year old tux he wore when he had about twenty more pounds on his body.   As I stood there watching this whole scenario unfold before my eyes I was appalled --no other words can describe what I was seeing.   Imagine a very dated looking tux tailored to fit a much larger man being worn by the father of the bride.   It was not a pretty sight but he was adamant about wearing it saying no one would look at him anyway and besides, he was not going to spend a dime renting a new one when this-- butt ugly (my take on it) -- one would work.

 I have learned in our 38 years of marriage that sometimes I need to step back, give him some space, smile as if I agree and then begin scheming on how this was going to go my way--knowing come hell or high water in the end he was NOT wearing that tux to the wedding.

A month later when he reminded me a button was missing (yes, it was lacking a button) on this prehistoric tux, I stood in front of the button rack at the fabric store and thought--what am I doing?  For crying out loud, this is our daughter's wedding and the time has come to put my foot down to end this conversation.  I drove home practicing my speech that would sway him to my way of thinking and also devised an ultimatum if he could not be persuaded.

I walked into the house and declared, "You are getting a new tux for your daughter's wedding, period."  Before I could counter with or else blah blah blah will happen, he looked up and said, "okay".  Okay?  I have been plotting on how to convince you and you say okay?  Hell and high water has reached its end.

The saga on his attire, unfortunately, did continue. A tux was rented except for the shirt which he had recently purchased and the shoes which were in his closet next to the-- uglier then sin-- tux.  How much can tux shoes change in twenty years?

  Fast forward to the blessed day when ten minutes before were to walk down the aisle with our daughter, Rob disappears.  Nerves? A hankie for his tears?  Where did he go?

In the nick of time he emerges from the room as we are escorted to the entrance.  I didn't realize it at that moment but, remember those twenty year old shoes that "will work just fine"?  Duct tape was needed to keep them from flopping apart and tripping him as he walked his precious daughter down the aisle.  Duct tape on his shoes.  At his daughter's wedding. Thirty-eight years of "Rob" moments and this one certainly takes the cake.


Thanks for reading # 487 of 7777.

#486 THIS is a Must Read (Unless You Like Pink)

Advocating for the ones I love

So the pinkin' stinkin' October fest will soon arrive and I will again sit this one out.  Let's take a moment to ponder what will begin in nineteen days. You pay X amount of dollars on some pink trinket or food item or heaven knows what else gets this color slapped on to it, and NOTHING changes or has changed since 1985 (20-30% of all those initially diagnosed with breast cancer still DIE from this disease).  The Pinktober goal is to bring awareness.  DUH!  Trust me, we have been hit over the head numerous times and are fully aware of breast cancer (unless you have been hiding under a rock for the past-- how many years?).  We know about mammograms, early detection (myth buster--does not necessarily help us) and where to get free wigs for our bald heads.

 The pinktober celebrations that gag many of us in the metastatic community are not impressed.  The mission is finding a CURE... and we are not there yet.  Guess Pinktober has not been working like they would lead us to believe.  Speak to the families of the 40,000 who will die this year and ask them about breast cancer awareness.  They have been living with it every single day.

Do not assume research grants will be funded by the NFL wearing cute pink shoes or department stores spending valuable money so people can wave pink towels during the games (oh, and by the way, here's a $10 gift card to purchase more stuff). Let's get our butts in gear and put all that "pink money" into research.  It is our best hope.  Wearing pink boas will only make you look silly--it does not keep us from dying.

More time with our families is what we cherish.  We hang on as we suffer through side effects that sometimes leave us curled in a fetal position.  Knowing the reality of this disease we still continue to advocate for our children and grandchildren's futures.  I wish others would do the same.

Please, think about us as the pink begins to flood the malls and the grocery stores and the random obscene places that are jumping on the band wagon to have you buy, buy, buy.   Will this money reach the hands of the researchers who are desperately working to save our lives or will it line the pockets of corporations who don't understand (or care?) we are dying?

Go to www.onewomanmanylakes.org and hit the donate button.  Both METAvivor and ACS have pledged 100% of the donations from my website will go to research.  My beautiful daughter and granddaughter will thank you in years to come... and hopefully, so will I.

End of my ranting for the day and thank you for reading # 486 of 7777.

#485 Saving a Life, Saving a Life

Saving a life!!!

Mets Monday today and I'll post this just in the nick of time.  Since I will be speaking to a Rotary group tomorrow, I am in the education mode for metastatic breast cancer.  Misconceptions surround this disease and this article brings MBC to the forefront and how we can no longer be ignored if we are going to save lives.

Please read How Do Breast Cancer and Metastatic Breast Cancer Differ from the Huffington Post.

Saving lives--that's what it should all be about.  Go to www.onewomanmanylakes.org to help us fund more research to give all of us more time.

Thanks for reading # 485 of 7777.