#502 And the Question Is...

NBC

Anyone living with any metastatic cancer knows living a long life is in jeopardy so it seems ironic the latest big winner on the TV show, Jeopardy, had Stage IV colon cancer.  She was amazing as she answered question after question to win BIG on this show.  Certainly an admirable feat for anyone but even more remarkable when one has a terminal illness.

To view an enlightening interview with her go to Cindy Stowell--Jeopardy winner!  We can all learn from her and how to live your life fully and completely.

In memory of Cindy I'm sure she would love this...

A little Jeopardy fun:

For $500--The answer is: Deadly
DING! --What are metatastatic cancers?

For $1000--The answer is: Research
DING! --What will help the death rate go down for metastatic cancers?

For $50,000--Matched funding
DING!--What happens when I donate to the UW Carbone Cancer Center?

You have heard it and seen it-- now do it!  Go to UW Carbone Cancer Center and donate to the "More For Stage IV" fund.

Thanks for supporting us and reading #502 of 7777.

#501 Shazam! $50,000!

The Power of Shazam!

Mets Monday and time before the big holidays arrive to educate the masses on what's going on in the metastatic world.  We don't get holidays off so we might as well spread the word  (opposite of good cheer) to others and how research is so desperately needed.

My most recent pet scan revealed bone metastasis progression to the other hip, upper arms, shoulder blades and lower back area.  Never a dull moment!  The key is to keep it contained to the bones and  me comfortable while we wait for this next treatment to start rocking and rolling.

To enlighten yourself on exactly what are Bone Mets--click and become educated today.

Oh, did I mention how you can help? Our December 31st challenge ($50,000 by the end of the year) is still going strong and with your year end tax deduction we will make our goal.  Every dollar you donate doubles which may double our chances of finding a cure.  Go to UW Carbone Cancer Center and shazam!  we are all winners!

A quadruple thanks to you from me and from the hard working researchers at the UW Carbone Cancer Center.

Thanks for reading #501 of 7777.

#500 Every. Single. Day.

 Smiling. Every. Day

The 500th post!  What profound or heartfelt statement could I make on this golden entry?

Maybe a reflection on the past two and a half years living with metastatic breast cancer would be a beginning.  I have preached and hollered about the statistics of this disease and how funding needs to be increased and how we are dying every day--113 today, but I haven't written how it feels to live every single day not only knowing the facts but feeling the effects from the drugs and the cells mutating in my body at a faster rate than the drugs can stop it.

The good days do come and I embrace them with a vengeance.  Swimming, exercising with my buddies at the Zone or taking a walk with friends equal days that must be cherished and revered.  I have always been an active person and when I can get out and do something it is a treasured gift. When those wonderful days arrive I'm reminded that this is the best that it will get because around the corner could be one of the dreaded rotten days that pop up when least expected.

On those not so great days getting out of bed is an effort, talking to anyone is exhausting and the reminder that I have cancer raging through my body is debilitating.  This last one--the debilitating condition of the disease--is the one that wrecks havoc on my very being.  Mentally preparing myself for getting through another day--good or bad--is difficult because no matter what kind of day I am having the *&^%$ cancer is still there.  The best is today and tomorrow it will be the next best until...until the end, I suppose.

The pain, the fatigue, the unmentionables that go along with the side effects never truly go away.  I'll put on my smiling face and you may not know what kind of day it is and that's okay.

But what I'm really trying to say is:

Cancer wears you down.  That's it in a nutshell as I try to analyze and help others understand about my daily life.  I do live fully and completely as I can.  I do have a positive outlook but the word, reality, hits me in the face

   Every. Single. Day.  

And there is no getting around it.  Do I curl up in the fetal position and surrender?  Of course not--not today or any other day and that is why I keep advocating and encouraging others to advocate with me.  Hands clasped together and we are a force that will not be stopped.  Please, share and join me this holiday season by donating to the UW Carbone Cancer Center at my website www.onewomanmanylakes.org.  All donations made by December 31st--(End of the year tax write-off!) will be matched.  50,000 grand is the goal and we are getting there!

My daughter and my granddaughter should never have to think about "good days and bad days" of cancer.  Let's do it for them and the rest of us living it day by day.

Thanks for reading #500 of 7777. 

#499 Hanging on For You

Hanging on for these three plus three more!

I'm hurting. I'm angry. I'm fed up with this whole cancer "journey".  Who would decide to go on a trip like this for crying out loud?  It's the pits.

There--that rant is over and now it's time to focus on what to do about it. 

  If you have already taken out your wallets, thank you.  Now, don't go away yet.  Get ten (or more) people to donate by the end of the year.  Ask them to share their holiday gift giving with those of us who might not make it to the next one.  If your ten (plus) friends could donate ten dollars (or more) and then those ten (+) friends had ten (+) more friends...well, you get the picture.  This could be monumental!  And you would be part of it.  Helping the MBC community celebrate because research is working for us.

How can you do that?  The explanation below explains the new direction of our who, what and why  intentions.  Rewrite it in your own words and send it out in a mass email to your friends.  Tell them about your buddy Mary; or Megan or Kelli or Beth --someone you know living with this disease.  Tell them we are trying to save my daughter and grand daughter or theirs.  Tell them we need their help TODAY.  Tell them we can not wait for another holiday season to go by without a cure.  Tell them time is running out for many of us.  Please, just tell them...

To our Friends,

Our intent in raising funds has been to support the best research that can create drugs and treatments for the metastatic breast cancer patient. The goal has always been to increase the precious time we have with loved ones.

We are pleased to announce a collaboration of One Woman Many Lakes with the breast cancer research group at the University of Wisconsin Carbone Cancer Center. UW Carbone is nationally recognized as a leader in research that translates to specific drugs and treatments for those living with MBC.

A fund specifically for MBC research (called More for Stage IV) has been set up at the UW Foundation. Our goal is to raise at least $50,000 by the end of the year to award a fellowship in the breast cancer research field for a year. This is a highly tangible way to develop the next generation of metastatic breast cancer researchers.
All donations received by December 31 will be matched! Click the DONATE button on www.onewomanmanylakes.org and give those with MBC more time. 

It's in your ball park now.  We are tired, hurting and trying to hang on, so please, show us we are worth it.

Thanks for reading # 499 of 7777.

#498 I Refuse to Get Bucked Off In This Rodeo

Dr. Ruth O'Regan

I'm back after a difficult November and am ready to slash back against cancer with force.   Do you hear the blood curdling scream of anger?   The ugly fact is I do not have the time to wait for the Moonshot to deliver the money or cancer organizations to figure out who gets how much funding.  I need answers and a cure NOW.

  Recent scans disclosed this *$&# cancer has decided to outsmart the faithful drug that has been my daily companion for twenty-six months.  A brief side note--the longevity of this treatment is almost an unheard occurrence in the stage iv community.  Although it's been a good ride--manageable side effects--the gig is up and it's time to move on.

This somewhat bump-less joy ride came to an end with progression found in both hips, pelvic area, upper arms and shoulder blades.  My favorite onc doc broke the news to me with the reassurance of another drug up his sleeve for tackling the next rodeo (or round of treatments, however, I like the sound of rodeo--makes me feel like a cowgirl).

But I digress...

With this down right crummy news it is with more gusto than I would have previously announced that One Woman Many Lakes will be partnering and raising funds with none other than the one and only

UW Carbone Cancer Center here in Madison, Wisconsin. 

 The UWCCC is a nationally recognized leader in breast cancer and specializes in research that translates to specific drugs and treatments for people just like me.  This is what I need right NOW.  I can not wait five more years and hope to figure out why my cancer cells mutated and spread to other parts of my body. Hope is not a strategy.  Research with money backing it along with top notch researchers will give me the treatments I need... and that is a hopeful strategy.

The brilliant Dr. Ruth O'Regan (from UW Carbone) and her band of heroes have devoted their lives to saving my life along with my 250,000 friends living with MBC.  She and the others will not allow 113 sisters, mothers, friends to die every day on their watch as they seek to find the link to end this dreadful disease.  I'm thrilled they are willing to ride in this rodeo with me, and for that reason I support their valiant efforts with a little ($$$) help from my friends (you!).

Stay tuned to what you can do to help--we need it more than ever before (written by someone who is a little undone by the latest scan).

Thanks for reading # 498 of 7777.

#497 No Words But Getting There

The next generation

Just begin.  One word at a time and maybe the rest will follow suit.  Since my sister's unexpected death and now the news of my cancer spreading, I have found it difficult to concentrate on anything except getting from day one to day two.  Writing was once my refuge.  Now there is no consolation.

Heavy burdens to carry and as I trudge forward through the murkiness of life I am mystified by our belief of a blissful carefree existence where everything goes as planned.  Wrong! Life never received the "happiness" memo and although deep down in our gut we understand it as tragedies do occur, we still carry this wild belief that if we follow the rules we will live happily ever after--prince (or princess), glass slippers and all.

But I must look on the bright side--the glass half full--the "gather the troops 'cause we are going to win this one". Reflecting on the months prior to my week from hell we were blessed with a much anticipated new grand baby and my daughter's wedding that took my breath away with the beauty and family love surrounding us.  Those are the things I cling to and comfort me when feeling overwhelmed.  Good things do happen so when we get blindsided and punched in the gut, we remember with sweet memories soothing our broken-hearted souls.

  I will wallow when needed but to move forward I must continue to advocate for more funding and research for metastatic breast cancer.  My campaign has intensified, my purpose deepened because I now fight to stay alive to be there for my sister's children and grandchildren.  I am their champion to find a cure so they will live long lives without this disease lurking in their future.

 My sister is smiling thinking of me as the caretaker when she was always the master at watching over all of us.  Rest now, Kathy, and we will take it from here.

Help me help them and all of our children.  Go to www.onewomanmanylakes.org and donate, get involved and stand with me. This would make my sister pat you on the back with the words, "Good job and thanks".

Thanks for reading #497 of 7777.

#496 The Circle of Life

Grandpa with little Jordan Kathryn

I can not make sense out of it.  I am living with stage iv metastatic breast cancer--a deadly diagnosis with horrible statistics if you want to stay alive.  33 months is the median survival time.  I am on month 29 and still hanging in there hoping to pass the next milestone.  But this is not what has me completely undone.

What has turned my life upside down is the sudden loss of my fun-loving, talented crazy younger sister due to complications from a double knee replacement.  It is mind boggling, devastating and crippling right now.  She was not to die first--that was my doom. We didn't have time to discuss how, after I was gone,  she was to continue to parent/advise my three adult children (yes, they will always need additional parenting), fawn over my granddaughter and watch over Rob.  She, along with my older sister, were going to carry on, share the memories of our childhood, be there for each other.

Sisters

And now she is gone and my heart is breaking.  Not only for the loss of my best friend but for everything we had left to say to each other.  I am told to cling to her memories, cherish the good times and time will heal.  Right now "carrying on" does not seem possible. I want her here by my side because she was the one who gave me strength to keep going.

Sixty-two years old, recently retired from a successful teaching career and a new grand baby on the way. How does life switch gears so quickly?  Her legacy of love left behind include her beloved husband--sweethearts since eighth grade--and her four rock star children who would make anyone proud to even know them.  The super stars of her life were her seven grandchildren--Baby Jordan Kathryn arrived on Friday.  Their grief is palpable as they try to make sense of her loss.

Her numerous lessons taught us how to live--grab on to life and swing from the highest tree.  Learn and teach others was her mantra.  Case in point--she helped me make a quilt for my unborn granddaughter when I was at my lowest point after finding the cancer in my body.  At the time I could not even fathom rising each morning let alone be around when my first grandchild arrived.  She somehow knew I would hold this precious bundle in my arms one day soon.  Her no nonsense approach was to "get sewing and get it done"--and we did.

Anyone who has a sister knows that special bond.  A bond that ties you together with love, memories, laughter.  She knew me better than I knew myself.  Did she know I would survive her death and would be the one responsible for being there for her family?  Maybe she was aware of her limited time and that was why she seized life with such gusto.  I will miss this about her.  Even though I was the older sister, she was the wise one who taught me.   Sage beyond her years.

It has been a crushing blow but tomorrow will come and I will get up with a smile on my face when I picture her sewing her quilts or laughing at a joke. My loved ones will be hugged a little tighter, a little closer because of her and I will remind myself how lucky I was to be her sister for sixty-two years.

Thanks for reading # 496 of 7777.

#495 Give Us More Than a Dime for Much More Time

My heroes: Dr. Bonnie King, PhD and Dr. Christopher Contag, PhD

These are my heroes.  No red flowing capes or pointy things on their ears with a mask covering their grins; simply super heroes disguised as "Champions for the Metastatic Community".  They are researchers who are using their brilliant minds to find a cure and are the well deserved recipients of one of the METAvivor research grants for metastatic breast cancer.  Hallelujah!  They understand we need answers NOW and are doing something about it.  Thanks to METAvivor for recognizing and rewarding their talents.

Now you may ask, "But what can I do?".  You can make a difference.  Your donation today will help us achieve our goal of $20,000 by the end of the year and get us one step closer to giving us more time. Remember, it is all Heather and Maggie wanted and what we wanted for them--TIME.  It didn't happen, however, there are thousands of Heathers and Maggies clinging to the hope that these researchers and other like-minded pioneers in the field will find a magic combination of drugs to give us that precious commodity.

Here's a brief synopsis of what this grant will do.

Christopher H. Contag, PhD

Professor, Departments of Pediatrics, Microbiology & Immunology, and Radiology 

Bonnie L. King, PhD

Instructor, Department of Pediatrics

Stanford University

Modeling Therapeutic Strategies for Breast Cancer Metastasis to Bone 

In this grant application we propose to study the “vicious cycle of bone metastasis’ in our human bone culture model. We will: 1) Develop methods to measure how much bone is being broken down, 2) Demonstrate that we can reverse bone destruction in our model with bone targeting drugs currently used to treat bone loss in osteoporosis and metastatic cancer, and 3) Measure the effects of these drugs on breast cancer cells growing in human bone tissues. These experiments will show that we can measure the cell and tissue responses that occur during late stage bone metastasis, and modify them with current drugs. This will prove that our model can be used to test new, more effective approaches to prevent and treat breast cancer metastasis to bone.

Discovering the illusive jackpot of a cure is not a simple task to undertake but if Dr. King and Dr. Contag are game so are we to support their research.  To make sure they can continue their critical work go to www.onewomanmanylakes.org and donate.   All of us with the disease, along with our children and spouses and grandchildren and friends, will be forever grateful for our precious extra  TIME.

Thanks for reading #495 of 7777.

#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.

#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.

#484 This Day Matters

The Soon To Be Married Couple

Life events take on an entirely new meaning when you have cancer.  Every moment, every opportunity to be present is priceless and cherished.

A case in point--our only and favorite (of course)  daughter is getting married.  A major life event for us and, when she was just a wee one, I never doubted I wouldn't see this day unfold.  Unfortunately I hadn't anticipated that being there with her as Rob and I walk her down the aisle could be in jeopardy.  Who would have thought cancer would rear its ugly head and put this magical moment in our lives as an uncertain possibility.

Don't worry, I am still kicking around and according to my latest appointment, "doing quite well considering...".  Yeah, the cancer is still there, the statistics haven't changed and I've lost two dear friends in the last eight months... but I am still here. Nothing will get in the way of me sitting in the front row for the best day of her life.

Cancer thinks it can rob us of these moments but not this time. It has failed to ruin the wild and crazy anticipatory planning because we have shoved its sorry little arse someplace where the sun doesn't shine.  This ugly disease did not get an invitation to the wedding -- worrisome thoughts and nagging feelings are replaced by jubilation and joyfulness--those are to be the sentiments for the day.

Words of wisdom from the mother of the bride?  None that you already know but this MOTB can't wait to watch her precious child step into the next phase of life and I WILL BE THERE TO SEE IT!  As Heather always reminded us, "every day matters"; and this one, well, this one is one that matters the most.

To make sure I am around a bit longer--I have another child to marry off and, hopefully, a few more grandchildren to spoil--go to www.onewomanmanylakes.org and help us all.

Thanks for reading #484 of 7777.

#483 A Little Venting If You Don't Mind

One Heck of a Smile

It happened on the plane, it happened while in Dane and not too long ago it happened when it rained.  What, you may ask,  prompts me to write a silly Dr. Seuss-esk poor excuse of a poem?

The dreaded words from well meaning people telling me to keep up my "positive attitude" because, by golly, "it will keep this cancer from killing me", are what prompted me to write today.
*&(^$%#@$% is what I wanted to respond.  Instead, I smiled, nodded my head and said, "Well, it certainly makes me more pleasant to be around, however, the cancer doesn't give a rip how positive or how grumpy I am and it will do whatever it damn well wants to do, but thank you very much for pointing out that if I do die it was because I just wasn't positive enough.  Phew!  Blood pressure check required...

These truly well meaning people probably don't know how that sounds to someone living with a terminal disease.  What it tells us is it is our responsibility to beat this cancer and the best way to do it is dancing our way through life with a s^*t eating grin on our sorry little faces.  I would love to have introduced them to some of the finest and strongest women I know who would have cut off their right or left arm smiling while the saw cut through the bone just to have more time with their young children.  Don't tell me their attitude wasn't positive enough.  Cancer DOES NOT differentiate between a cranky old sour puss and a pollyanna smiling angel of a person.  It does not work that way.

Slowly I am calming down and putting on the proverbial grin on my face to make everyone think I am single handedly beating this disease.  If that makes you feel better, that is what I will do but please, I beg you, do not tell me or the 250,000 others living every single day with MBC that we need to be upbeat.  Again, that's not how this crappy disease works.  If you still aren't convinced, please read this from Mayo Clinic

Myth: A positive attitude is all you need to beat cancer

Truth: There's no scientific proof that a positive attitude gives you an advantage in cancer treatment or improves your chance of being cured.

What a positive attitude can do is improve the quality of your life during cancer treatment and beyond. You may be more likely to stay active, maintain ties to family and friends, and continue social activities. In turn, this may enhance your feeling of well-being and help you find the strength to deal with your cancer.

Thank you for listening (if you have gotten this far) to #483 of 7777.

#482 Maggie Younggren--We Will Remember You

Maggie's speech at the die-in October 13, 2015

Please watch.  I could not say it any better than Maggie Younggren on why we must keep pushing for more research for stage iv metastatic breast cancer.  Maggie, you will be missed but your legacy lives on with your advocacy of fighting for more funding.  We will be champions for your daughters so they will live in a cancer free world.

Go to www.onewomanmanylakes.org to help Maggie's wish come true--"Let's change this disease from terminal to chronic..." We owe it to her and the 113 who will die today.  Never forget.

Thanks for reading #482 of 7777.

#481 Remembering the 113

I have been hollering and asking for more funding, more awareness and more for stage iv for two years.  Between Metavivor and ACS we have raised a ton of money-- close to two hundred thousand dollars since beginning this campaign.  That's mega research funding for those talented scientists.  Is it enough?  No, it will never be enough until we can check this off as a disease that can be cured or at least labeled as chronic.

  Awareness is the second part of my campaign and if education is what it takes, then we must spread the word. 113 will die today from metastatic breast cancer.  Let's stop this madness now. Go to www.onewomanmanylake.org print out the bib or make your own, wear it while doing any kind of activity and post it on social media with the hashtag #tri4mbc. Be part of the solution.  The future generations will thank you.

My mets sisters are dying.  Please help us.

Thanks for reading #481 of 7777.

#480 Living With a Zombie!

Living with a Zombie

It's METS Monday and Mary is off at a retreat so she asked me to be her guest blogger.

Over the past year, Mary and I have had our moments of visiting the ER. In the back of your mind you always think any medical issue is related to cancer. So when she had trouble swallowing/choking I started googling throat cancer while sitting in the ER. It turned out her Schatzki’s Ring was closing up. This winter after being bent over with terrible stomach pain causing another trip to the ER, I goggled stomach cancer. It turned out to be diverticulitis.

So last week while fishing in Montana I get a text from our son that mom is heading to the ER with an eye injury. Okay, MBC can spread to other organs— but the eye? She was gardening and got poked by a stick. No cancer, just a subconjunctival hemorrhage.

When I got home and met her at the airport I saw that my wife had turned into a Zombie. As her caregiver and beloved husband who knows what’s next.

Rob

#479 Block Out Cancer Volleyball!!!

Maggie and I thank you for your support!

Our local workout place, The Zone Fitness and Training, has partnered with the Headquarters Bar and Restaurant to bring you a volleyball fundraiser to benefit Metavivor.  Two establishments in town are making sure they have our backs when it comes to fundraising and getting the word out that we need research NOW!  Please consider either forming a team or supporting us on August 14th starting at 1 PM.  

We are also looking for local donations for a raffle.  Contact the numbers below if you have any items to contribute.

One step closer to finding a cure...that's what it is all about and you can be part of the solution to helping save lives.  Hope you can join us. Go to their Facebook page and find out more.

Co-ed Sand Volleyball Fundraiser Tournament to benefit Metavivor! 
**Limited Space Available!

Contact Jen: jen@thezoneoregon.com
for team registration and/or to obtain tournament details.

12:15pm Registration
1pm Start

*Co-ed teams of 6 players
*Rec League Rules will be used
*Raffle prizes

$75/team through Aug. 6th
$100/team after Aub. 6th

Event location: Headquarters Bar and Restaurant, 101 Concord Dr., Oregon, WI 53575

**ALL proceeds to go to Metavivor for Stage 4 Metastatic Breast Cancer Research and Awareness!
*In partnership with "One Woman, Many Lakes"

SPECIAL THANKS TO:
The Zone Fitness and Training
Headquarters Bar and Restaurant
Sprint Print

Thanks for reading # 479 of 7777.

#478 DC Bound

Hi Washington

The craziness of life is slowly calming down reaching into the near normal range so I'll share the last few weeks of life in the Gooze house.

A week and a half ago I boarded a plane to Washington DC to participate in the scientific peer review for the Congressionally Directed Medical Research Programs (CDMRP).  Being selected to be on this panel with eighteen extremely distinguished PhD's and medical doctors was quite an honor and a way to roar once more.  The panel consisted of me, three other patient advocates and researchers with enough brain power that could launch us towards a cure for cancer.

The history behind my trip began in late May when I received my first grant proposal along with a couple of webinars to educate me on how to meet the challenge before me.  To say I was overwhelmed is an understatement but I persevered and eventually figured out what they meant and the necessary comments to complete the task.  It was gratifying to see all the possibilities of research for breast cancer and if even one of the proposals discovers the elusive cure it will be well worth the time and money put in to this entire effort.

I was assigned a mentor for the duration and she was simply amazing in her ability to understand my bumbling emails especially when I had a question or two (there were definitely more than two but less than a hundred) on a regular basis.

When departure day came and I landed in DC I was reassured that all was well when the bus picked me up, my room was ready at the hotel and I found the right room to enter on my first panel discussion.  Our chair and cochair were extremely competent and thorough in their explanation of how the sessions would proceed. Fascinating process and they have been doing this since 1992 so it is an efficiently run machine.

In our group we all had a vote and, as a patient advocate, I felt my voice was heard loud and clear.  The first time I spoke into the microphone was a bit intimidating but after getting the virgin launch out of the way I felt comfortable sharing and speaking out about MBC.

I discovered that the researchers and patient advocates alike were determined every effort was made to find the best science that will catapult us into making this a chronic disease. We voted with the knowledge that each proposal with high ratings will help millions of those living with cancer.

This was truly a memorable experience even though I moaned and groaned while reading and commenting on each grant prior to the big collaboration in DC.  I know the researchers who will ultimately be selected will have a profound affect on future generations and I felt privileged and honored to be a part of it.

Thanks for reading #478 of 7777.

#477 There's No Place Like Home

fanpop

Only a few days late but I've had both a roaring tornado and a splendid rainbow hovering over my head either one or the other or simultaneously.   After two and a half days of advocating for MBC in Washington DC I'm convinced we are on the right track for getting the word out to researchers and those who can make a difference (those were the rainbow circling my head days).

Unfortunately the tornado blasted me on my trip back home when not one but two delayed planes kept me from being like Dorothy as the winds took me from Denver to Chicago and still couldn't quite make it to the home front.  Wandering around O'Hare airport at 2:00 AM trying to find a shuttle to take me to a hotel for some much needed sleep almost put me over the edge until the rainbow emerged with some extremely helpful workers guiding me to the right door.

My Denver journey had me sitting next to a delightful young mother who was interested in my past few days doing peer review work on grants in DC.  Nothing like having a captive audience on a plane where she endured my ranting on funding and awareness.  Actually she was surprised at the facts and thanked me for the mini lesson on MBC.  Rainbows were hovering at this point despite the ongoing storm of disasters with the flights.

In the end, I made it back home with my bag intact and a greater appreciation for scientists, frequent travelers and my very own bed.

Now go out and help find some rainbows for those living with MBC by visiting my website at www.onewomanmanylakes.org

Thanks for reading #477 of 7777.

#476 Give Me a Little Bib Action

HAPPY FOURTH OF JULY!!!

Lake  Monona--clear waters

You're busy, I'm busy, but please take a moment and go to my website and print out a bib, wear it doing something active and then post it on social media. GET THE BIB HERE! If you check out #tri4mbc on Facebook, you will see some incredible poses with the bib.  Now don't just sit here reading about this, go get creative and keep the buzz going on saving lives.  We can make a difference and broadcasting about the low priority in research for this disease will keep spreading the word.  (Pass this on to your friends and their friends and their friends.) 

Go to my website to see the news release on the latest videos of the swim (which was awesome) and other facts about how you can help.  The best ever husband, Rob, would appreciate your presence on this site as he has diligently worked to make it happen.  He also knows this could keep me around for a long time and on most days that makes him a very happy man (reality check--we all can be a pain in the a$$ some days).  

Pause today on this happy Fourth of July and think of those who would benefit from your gift to give them more time with their families.  ONE WOMAN MANY LAKES is the place to be to be part of the solution.

Thanks for caring and reading # 476 of 7777.