#494 The Underbelly--Check It Out.

The Underbelly

As I comb through various websites and closed metastatic Facebook walls, I am heartened by the number of advocates rallying the cry for more funding and, my favorite, "don't ignore stage iv".  It may be the ubiquitous theory when you buy a red car, all you see are red cars on the road, hence, once you have MBC all you read about is MBC. I would like to think we are finally getting recognized and this is due to a few vocal groups ranting and spreading the word on what this disease actually looks like to the 250,000 of us living with it.

Met Up along with METAvivor are two organizations who are particularly forthright in sounding off in Washington DC and the general public.  Exciting and reassuring to see this disease move into the limelight of certain institutions that have the power to turn our hope into a reality--more time, much more time...a lifetime of time.

The other source of good news for those living with breast cancer is an online magazine titled, The Underbelly.  I would attempt to describe everything about this superb publication but would probably leave out something crucial in my telling. This is a brief description to entice you to read more--"We're not here for pink ribbons & silver linings. We share powerful breast cancer stories & more! Writers welcome."

Go visit the site--www.theunderbelly.org.  Living with breast cancer or not, there is much to learn and educate yourself about this disease.  I encourage you to read the journals and delve into the minds and souls of what it is like living on the edge.

Needless to say I was pleased and flattered when they published my poem, Swimming the Course.  It can be found at The Underbelly.   Thanks to the editors for allowing me to express myself and acknowledge the trials of this disease.  You are the best.

Thanks for reading #494 of 7777.

#493 Two Degrees of Separation

Missmalini

It never ceases to amaze me when certain events take hold and the unexpected happens.  Case in point--we had our 2nd annual Die In on the steps of the Capitol building in Madison on October 13th.  It was well attended and, I believe, a moving experience for everyone.

The goal of the event was not necessarily a fund raiser, but rather a visual of how many people die every day from this disease.  As I slowly counted to 113, each person laid down and remembered a woman or man who died from metastatic breast cancer on that day. Gut wrenching reality but a powerful statement to help spread the word.

A few of my friends could not be there due to work, travel or other commitments.  One supporter was traveling afar and posted a picture of herself  on Facebook "dying" on the rock in some beautiful setting commenting how, even though physically she could not be here on the 13th, she was thinking about me and the 250,000 of us living every day with this disease. To make a long story short, her clever picture was shown to an older gentlemen who, in turn, was so moved by the story he sent a donation to METAvivor--without any solicitation from anyone.

Remarkable how one picture, one event will propel another into action. One donation at a time, the potential of more lives saved. That's how we must get things done.

To view the Die In go to. 2016 MBC Die-In

If you are as impressed as I am by this gentleman's generosity, go to www.onewomanmanylake.org and donate.  It takes a nanosecond and, trust me, you will be greatly appreciated by a whole slew of metsters around the country.

Thanks for reading #493 of 7777.

#492 Rename Pinktober to METASTATIC AWARENESS Month

Hit the "Take Action" button at www.onewomanmanylakes.org

This is October--Breast Cancer Awareness month.  Do you know about breast cancer or has the rock you've been hiding under for the past thirty years numbed your brain? How about metastatic breast cancer?  No?  Never heard of it?   Not surprising.  It is the only breast cancer that kills yet NO ONE seems to be talking about it.

WE ARE DYING at a rate of 113 a day, yet despite my ongoing blasts of educating about this disease, I continue to meet people who have no clue what metastatic means and often ask when my treatments will end or if I am in remission or if I still have cancer because I look so good.

Here are a few facts to set you straight.   If you need more information, go to my website link located at the end of this rant.

• Metastatic means it has spread to another part of the body--the brain, lungs, liver and the bones.  Sometimes you get "lucky" and it is only in the bones. You also could hit the complete opposite of a Jack Pot winner and have the cancer cells take residence in all of the above organs. This is what kills.
• Treatments will NEVER end when you are stage IV.  We are lifers and will be on some form of medication/chemo/whatever else docs have in their limited bag of meds until this disease takes our last breath away.
• No, I am not in remission.  I have active cancer cells in my bones and at any time they may decide to take a road trip and attack some nearby organ or body part (see the above on how rotten that can be).  
• Thanks for the compliment of looking good, however, don't check out my insides because it isn't pretty.  Hair is on my head and I am not doubled over with pain when you see me but it doesn't mean that the cancer (or the treatment) isn't causing havoc on my body.

Am I sounding like an angry woman?  I admit, it makes me furious we are still clinging to the survivor falsehood-despite the fact that 20-30% of initial breast cancer diagnosis will recur to stage IV-- of living happily ever after (treatments).  This myth, this story of a "be happy, no worries" attitude prevents delving into the reason over 40,000 are still dying every year.  Even with enormous amounts of money raised for breast cancer awareness (enough already, WE KNOW ABOUT BC AWARENESS), research dollars are doled out with a measly 2% towards drugs and treatments for the already metastasized patient. Shame on them for leading us to believe they want a cure.  2% of all that money?  Go back to the sentence of the percentage of women and men who will have a recurrence. Give us 20-30% for crying out loud. Maybe then they can shout about a cure.

For now there is no happy ending for the 250,000 of us living with metastatic breast cancer.  A dream for a longer life-yes.  Reality--no.

Please support the cancer organizations who will donate to FINDING A CURE and please, I beg you,  skip the whole pink ribbon cock and bull story.  It might make you feel like you are doing something but this will not make our dream come true.

Go to my web page  www.onewomanmanylakes.org to TAKE ACTION and force the hand of NCI to put metastatic breast cancer on the forefront to saving our lives.  It is what matters most.

Thank you, thank you for reading #492 of 7777 and advocating for us.

#491 Roller Coaster Ride!

Travel Channel

A roller coaster.  A few people I know who are living with cancer were discussing what life is now AD (after diagnosis).  Good days, bad days, days when getting out of bed is a struggle, days when energy abounds.  One of the difficulties of this disease is to figure out when you will be flying high on that coaster or spiraling down to the bottom of the ride.

We all agreed there is no rhyme or reason on any particular day,   It sounds like a cliche, but those-- feeling great and can tackle anything-- days are cherished and embraced and made to matter.  Two in a row--what a gift!  Unfortunately right around the corner may be a day that isn't quite as (how can I say this?) agreeable.  Not such a wonderful present.

The discussion delved deeper into wondering if we let others know about the highs and lows or do we keep it to ourselves not wanting to worry or burden anyone.  We all agreed there is an inner circle who "get it" and will often be included on our daily rides.  Putting on a smile for others on the off days often helps us get through it even if that grin is a grimace.

We also agreed cancer has taught us many words that begin with the prefix "re"...

readjust, reconfigure, rewind, reset, rethink, redo, rewrite, restore, reevaluate and on and on.

It has also taught us

Funshifter

And that's what we all intend to do.

 Now go to www.onewomanmanylakes.org and find out how to help us all have the ride of our lives.

Thanks for reading # 491 of 7777.

#490 Catfish

Today is not my usual blog day, however, Rob insisted everyone should know about my change of heart with my continuing love/hate relationship with cats.  First let me state that I have loved cats prior to Muffin entering our lives.  I found them to be an interesting specimen guaranteed to frustrate you even while embracing your heart.  I can name a number of cats I have been quite fond of but when Muffin entered the arena, it all changed.  

Now this kitten might bring me back to loving the creatures again.  Read how Catfish captured this-- set in stone...never getting another cat again--heart.

WENT FISHING AND CAUGHT A CAT by Rob Gooze (lover of all animals)

Tuesday was a beautiful fall day so I took Mary fly fishing around Montfort, WI. We were unsuccessful at my favorite spot, then the 2nd area already had fishermen so decided to try one more spot on the Blue River. Again we were shut out, but before we left for home, Mary needed a bathroom so she headed back towards the stream. Once there she now heard loud crying like a fox, but then a small black kitten emerges for the brush and heads right up to her.

We have had lots of cats in our marriage but the last one, Muffin, died about 18 months ago and said we are done with cats, especially as Mary had a love/hate relationship with this last one.

I knew there is not a barn or farm house anywhere near this spot so assumed the kitten was abandoned. Mary picked her up and I googled the Iowa County humane society to drop her off on the way back. Was I surprised that Mary said let’s just take her home for now as the kitten sat contently in her lap?

A stop a Bill’s Grocery got us a litter box, cat food and litter and this morning was the vet for a checkup and shots. The vet said the kitten is about 3 months old. Say hello to the newest member of the Gooze clan, Catfish.

Thanks for reading #490 of 7777.

#489 Don't Miss This Opportunity!

Die In 2015

Put this on your calendar today!  A Die In in support of those living with Metastatic Breast Cancer--Thursday, October 13 at 11:45--Madison State Capitol steps on the State Street side.  

113 people "dying" on the Capitol steps will show legislators, cancer organizations and the public that stage IV needs more. Let's get 500 people to show up; and maybe, just maybe, someone who could make a difference for us will take notice.  Please help spread the word and share, share, share.

Not in the area but still want to help?  On that day, go to my One Woman Many Lakes Facebook page and click the link to send a message to NCI for more funding for metastatic breast cancer.  It's easy and you could be saving lives--a pretty impressive email from your little old phone.

Thank you, Tiger Lily, for advertising our Die In event on your webpage.  Click here to see their latest blog-- Go To The Die In and more information about October 13th.

As always, go to www.onewomanmanylakes.org to find out more on how to help keep us metsters alive.

Thanks for reading #489 of 7777.