#471 An Invite For You

Thumbs up for living!

A personal letter to YOU!  The swim season is gearing up and I would love to have you join in--either with me on each day or from afar as you swim, bike, run or whatever activity gets you moving.  Let's make this year the year that we advance the needle on funding for MBC.  Be part of the solution and unite behind this important cause.  We are mightier as a group.

Dear Friends and Family,

An exciting summer is ahead for us and you can be a part of it, and of course I always could use your help to get the word out.

I have two swim events this June for you to join my campaign to raise awareness and funding for Metastatic Breast Cancer. Now you can scream and rant with me while having a good time!

JUNE 14 - Lake Waubesa starting 1:00 pm at McDaniel Park in McFarland near the Green Lantern. It will be about a 1.50 mile loop returning to McDaniel Park. The swim is in memory of Heather McManamy.

JUNE 28 Lake Monona starting 11:00 am at Law Park.  This swim will be about 2.50 miles, also a loop returning to Law Park.

Swim with me or come with your kayak, canoe or boat. Let me know ASAP if you can be in/on the water for either swim.

I also could use “ground” control and if you remember last year many of you passed out information, directed people to different areas and kept everyone engaged.  Whatever needed to be done, you did it!  

The June 28 swim is part of One Woman Many Lakes Day with everyone taking part across the nation!   Two other women with Stage IV-Metastatic Breast Cancer are joining me in a “triathlon”. Lesley Glenn from Los Angeles will climb a nearby mountain and Leslie Falduto from Dallas will run.

More importantly, I need you to join the One Woman Many Lakes team to be part of the campaign. Please share with others and go to www.onewomanmanylakes.org and:

SIGN UP-stay current on upcoming events.

ADVOCATE-click the advocate button for more research funding.

PARTICIPATE-print the bib and donate to join me.

Thank you from the bottom of my heart—you are all there with me,

Mary

Thanks for reading # 471 of 7777.

#470 There Is A Buzz In The Air!

Cool drone

The upcoming swim on June 28th has been generating quite the buzz.  Last Friday I received a phone call from the Tiger Lily organization who supports younger women going through breast cancer.  She was interested in what One Woman Many Lakes was doing and wanted to advertise the event.  Thank you, Tiger Lily for caring.

Kate videotaping my swim

On Sunday afternoon, I met with Kate Pabich who videotaped and "droned" me swimming in Lake Monona for a public service announcement and will be blasted away on social media.  Today I spoke at Madison South Rotary club describing my advocacy hat and my latest trip to DC.  Getting the word out about MBC--that's what it is all about.

South Rotary Club

I am not the only one who is doing the screaming. Across the country are advocacy groups shouting about more funding, not ignoring us and how you can help.  Join all of us now as we keep spreading the word to all who will listen.

Below is the blog that Tiger Lily will be publishing and promoting my swim day.  Please share this with all of your friends.  Be a part of the solution to end this disease.

What to do when you receive the death sentence of a diagnosis?  Metastatic breast cancer kills 113 of us every day.  How was I going to wrap my head around this disease and get through the next day…and the day after that…and the day after that. 

Swimming became my refuge and my salvation.  I had been doing sprint triathlons for 24 years when this diagnosis stepped up to try to stop me in my tracks.  It has been two years since receiving this gut wrenching diagnosis but I have discovered I could take control of my life by rising up and literally jumping in the water. 

It all began while sitting in my oncologist’s office hearing the treatment options and what may lie ahead for me when I asked him if I could still do the 2 1/2 mile swim that I had been training for which was scheduled right after finishing radiation.  His response was, “Of course”.  Two months later I was in Seattle in the water of Lake Washington swimming as if my life depended on it. It was empowering to conquer this lake and as I came ashore I felt that combining swimming and spreading the word about this disease was now my mission in life.

Fast forward from that day to a beautiful sunny March afternoon in Arizona’s Lake Patagonia with a 56 degree water temperature when I plunged into the water while my husband and dog followed me in a rowboat.  We had our homemade sign stating the need for more funding for MBC and how to help.  It was a lonely swim with few people on shore but one man stopped me as I exited the water and asked what I was doing.  I explained my mission and he said, “I’ll write a check”.  That was the beginning of One Woman Many Lakes and the plan to raise funds and spread awareness through swimming became a reality.

Since that first swim and nine months later, I have jumped into twenty-three bodies of water across the country and even took a plunge in Antarctica.  People have responded with their pocketbooks and have helped spread the word on this disease but, of course, it is not enough. The young and old are still dying—I know I must continue swimming and advocating until a cure is found.

Now a new year is here and it is time to get in the water again but this time with a twist. The idea began when I read about Lesley Glenn of Chino Hills, California, a hiker who hasn’t let her disease slow her down.  She and I connected and began brainstorming about doing a triathlon to highlight the fact that even though MBC is part of our lives now, it will not deter us from doing what we love.  We put the word out about someone joining us to do the third leg of the tri and Leslie Falduto from Texas responded that she was a runner and would love to join in. 

Now we have a team, a date and a goal—go nationwide and get anyone who has breast cancer, anyone who knows someone with breast cancer or concerned people who want this disease eliminated forever to join in and blast the airways.

On June 28th we want everyone across the country to get involved in doing something physical that day—anything from running to yoga to taking a walk—just get active. Let’s show the world that we are moving, thriving and want to stay this way but need research to keep us going.  

Go to www.onewomanmanylakes.org and join our team to stay informed. Click on the advocate button that will provide you with an easy way to send an automated email to major cancer organizations requesting more funding.  You will also find out how you and your friends and family can virtually join us on June 28th.  Print out a bib, wear it as you do your activity and post it on social media using the hashtag #tri4mbc. 

Research is our best hope and if the world starts shouting with us we will have more time being active, loving life and being there for our loved ones—and after all, that’s what matters the most. 

Thanks for reading #470 of 7777.

#469 It Is Not Enough

Photocase

It's Mets Monday and today's featured blog is from a woman I met through METAvivor, Lori Marx-Rubiner.  She hit the nail on the head describing how we are drowning while everyone talks about prevention, awareness, etc. etc. etc.

On a similar vein, I will be swimming June 28th and trust me, you will hear all about it beforehand; but this is a bit of a preview on how you can become an advocate and make a difference in our lives.  Have I peaked your interest?  I hope so because we plan on making a huge splash shaking up the cancer organizations and the government with their big bucks being our target.

Roaring, ranting and raving--that's us so stay tuned for more updates here and on my Facebook page, One Woman Many Lakes.

Right now, though, click on Lori's blog for a fascinating and enlightening read--Summertime and MBC by Lori Marx-Rubiner.  Just realized that this link will take her to her blog but not specifically to the one I am referencing.  Here is her entire blog.

Summertime and MBC by Lori Marx-Rubiner

It’s the time of year when I start thinking about cleaning up the back yard, heating the pool, and focusing on summer entertaining. We have a small home, so it’s our season to celebrate outside with friends.

This year I have a new plan – if anyone appears to be drowning in my pool, I’m going to focus on preventing future incidents by teaching everyone on the deck how to swim immediately! After all, the person drowning could be saved and then be hit by a bus, so she’s probably a lost cause. 

It makes sense, right? I mean, it is how we fund cancer research. We don’t focus on saving the dying – we focus on how to “prevent” the disease. Why shouldn’t that be the model how we approach other life-or-death situations? Heart attack? Have everyone within earshot has to change their diet. And pass the bowl of aspirin, stat!

Of course, I’m not serious. Except that it is the very model we use in cancer research funding. Those who are dying are left to figure things out on their own while the resources (read: funding) are, to continue my metaphor, directed to “prevention” whether primary prevention or prevention of recurrence, the lion’s share of the resources are for those on the deck, and in the case of early stage disease, those who are standing upright in the shallow end.

Prevention, if it can be accomplished, or risk reduction (much better langue IMHO), are without question noble pursuits. (We should keep teaching our kids how to swim!) I don’t know a single breast cancer patient who wants anyone else to go through what we have experienced. This research is critical – and I support it! But when people are dying, is prevention the first thing we should think of?

Let me remind you:

Percent of breast cancer deaths caused by metastatic disease:           nearly 100%

Percent of breast cancer funding focused on metastatic disease:                    3-7%

We have an opportunity to rethink this. Just as we as activists and rabble-rousers have  taught the world a lot about breast cancer “awareness” and pinkwashing, we can, we must work to focus attention on the profound disparities in the distribution of research funds.

The federal government’s Cancer Moonshot is beginning to gather momentum – we’ve seen the White House Task Force and NCI’s Blue Ribbon panel who will guide these efforts. You can learn more here. Personally, I am cautiously optimistic that this effort can make a meaningful difference. If it brings together creative thinkers, helps break down silos, encourages collaboration and provides funding, a lot can be done. To be successful, however, the work must be strategic and focused.

The question remains where the effort’s primary foci will be established. I would argue that the lives that are in immediate need of saving be given appropriate attention! One small step in that direction, if you haven’t already, is to sign the petition urging the White House to set metastatice research as a Cancer Moonshot priority.

It’s the moment to speak up, we have a window of opportunity that will close soon. We must keep this agenda in focus, urge our leaders to focus on what their decisions mean in the lives of real people.

So many of us living with MBC are tired of being told we don’t matter! We aren’t counted, our disease isn’t funded. We are, as I’ve said before, thrown under the proverbial bus – where a number of #FearlessFriends try to help. But when your life is literally on the line, it’s remarkably hard to deal with this additional burden amid treatments and debilitating side effects, scans and scanxiety, the need for self-care, and to spends time doing the things you love with the ones you love – knowing that new and worse treatments are to come – for those of us who are lucky.

So sign the petition. Talk about the disparities in research. Tell the story of your life. Contact your elected officials. Urge your organizations to put it on the agenda. Blog about it. Put it on Facebook. Educate wherever you can.

People need to hear from us right now – this is a moment in time that can make a difference!

What will you do to save lives?

Oh!  And don't forget to donate at Every dollar counts!

Thanks for reading #469 of 7777.

#468 She's Arrived!!!

Barnes and Noble

I love babies.  I love their smell, their touch-- everything about them.  Friends show me pictures of their grand children and I ooh and ahh over them and honestly am moved by their beauty.

Well, I have to announce the most beautiful baby ever born arrived on May 4th and she is none other than my gorgeous, brilliant GRANDDAUGHTER.  Perfection doesn't even come close to describing this precious baby.

And the emotions I feel when I see pictures of her are overwhelming.  All my "grandmother" friends warned me of this phenomenon but until she arrived I had no idea that looking at her would make the old ticker skip a beat or two.  Pure love is what I am feeling as tears of happiness flood down my cheeks.  For a tough old bird, this is quite the revelation!  Of course Grandpa Gooze can't even read a book about becoming a grandfather without crying his eyes out.  Check out Billy Crystal's book, I Already Know I Love You,  and see if you can stumble through it with dry eyes.

Living with cancer has made me appreciate every moment that comes along;  but this moment, this life changing moment, is indescribable and I swear I am turning inside out over the joy of this new being.

I am now patiently (or impatiently) counting the days until I have this baby in my arms.  It will be difficult, but I promise to try not to be the grandmother from hell shoving a photo book the size of a Volkswagen in your face.  If I see your backside running from me I will know I have overstepped the grandma bragging rights.

Now, let's make sure this beautiful baby knows that in her lifetime cancer will have a cure so donate to www.onewomanmanylakes.org and make us all very very happy.

Thanks for reading #468 of 7777.

#467 Your Mom Will Love This!

If You Can

Need a little advice for a Mother's Day gift?  Trust me--moms don't need more stuff.  Seriously, some of us are downsizing and getting rid of the mountains of odds and ends hanging around the house. We truly are thrilled to receive your gift and will tell you how much we love the ____________ that was picked out with care.

However,

We also want to be around for a long long time to watch you grow, graduate, marry and all the various events that will take place in a lifetime.  A gift to finding a cure for metastatic breast cancer would give us that wish of being there for you.

 One out of eight women will be diagnosed with breast cancer over their lifetimes and one out of three of those women will have it metastasize and become a terminal disease. Long range goals for graduation, wedding, etc. are on hold as we hope for the miracle drug that will give us more time.

Help us and yourself today by donating to www.onewomanmanylakes.org and give a gift that will have more meaning for you and for your dear mother--and could last all of us a lifetime.

On a side subject, check out this website-- Speaker Paul Ryan --and see me advocating for MBC.

Thanks for reading # 467 of 7777.

#466 DC--Hear Our Voices for MBC

Senator Baldwin

The Capitol in Washington, DC--the place where our voices should be heard was our wild and crazy Thursday talking with anyone who would pay attention to us.

It was a day that flew by while we literally ran from place to place speaking with senators, our representative and the Speaker of the House. Across the party lines we were well received as I told my story about the lack of research dollars for MBC, the need to increase funding of NCI and how SEER needs to include us (stage IV) in their data tracking.

Senator Baldwin's office allowed us an entire hour--part of which we spoke to an engaging young woman seemingly appalled with the horrible statistics and facts of this disease.  After our meeting she  introduced us to Senator Baldwin and encouraged me to tell my story--again--so the senator could hear it.  Yep, she understands what we want and how we can't wait for everyone--Republicans and Democrats-- to get on the same page.  I kept stressing time is critical--we are dying.

On the Speaker's balcony

From there we hightailed it over to Speaker Ryan's office and arrived 25 minutes early.  No problem as the (again, very young) aide gave us a tour of his main office and explained the history behind the Speaker of the House.  Speaker Ryan was gracious and supportive and, of course, reassured me of his  support in the fight for more funding.  His mother-in-law died of this disease so knows the devastation it leaves behind.

Senator Johnson's aide

From there we fast walked through the underground tunnel back to the Hart building and met with Senator Johnson's aide.  By this time I personalized my story to include young women who die so quickly of this disease and I could see she was moved (and concerned--could this happen to me?) by the scenario.  Yes, Senator Johnson supports health issues and would continue she reassured me.  Getting metastatic on his radar was my mission.

Senator Pocan

By this time I began feeling like a true badger as we again went through the underground tunnel to the Cannon building to visit with Representative Pocan.  He was on board and expressed his frustration trying to pass anything in Congress that dealt with funding.  It was reassuring that I had his ear and he is willing to push our agenda.

Senator Shaheen

Back to the underground and to the Senate building to visit with New Hampshire Senator Shaheen (thanks to my sister-in-law for setting this up).  It was her comment that she is here to represent all of the United States that gave me the confidence to ask for more funding and investigating the SEER data.  She had a relative die from this disease so the personal interest was there.

If the only outcome from this encounter is the word "metastatic" on everyone's radar--I feel it was a successful first meeting. Unfortunately it is not over yet and we will be back to keep the push for more funding. Don't ignore stage iv.

Remember to share and go to www.onewomanmanylakes.org to donate and find out how you can help.

Also, go to White House Petition for Metastasis to sign a very important petition.

Thanks for reading # 466 of 7777.