#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.