Wednesday, May 24, 2017

#524 White Knights and Super Heroes

Rob at the San Antonio Breast Cancer Convention
Numerous times I have written about my lovable husband and how he has been a reliable standup guy with the whole cancer diagnosis.  This--can I call it "an experience?"--is not for the faint of heart but to manage every day, every doctor's appointment and every scanxiety attack with such devotion and unfailing loyalty is beyond what I would have ever imagined from him...or, quite frankly, anyone else.

Not that he isn't generally a kind compassionate person, but to stick with this s#*& show and display your true colors when the chips are down and your wife's unlucky lottery number was picked makes me feel pretty darn lucky to have married him.

The blog, What They Don't Tell You the Day Your Wife is Diagnosed with Cancer, will give you a glimpse into what these courageous men face daily.  Parts were an eye opener for me and some were a bit disconcerting--you'll understand it when you read it--however, other paragraphs I was nodding my head in agreement.

 "I can say with Confidence no man enters marriage with the thought of losing his wife. We are the ones that go too fast, take too many chances, drink too much, and test limits. We see ourselves being the ones laying down at the end of life, hoping to leave security for our loved ones. In one moment in an office words are spoken and at that moment your life has changed forever. Let me repeat that. A Cancer diagnosis for your wife means life as you knew it or thought it would be has changed forever."

 Our lives have changed forever and although I frequently thank Rob (at least that's my attempt) it will never seem enough because who would choose this kind of life for our golden years. But the standup guy that he is offers no complaints from his sweet mouth. That is why his flowing superman cape is waiting for him to adorn his broad shoulders as soon as I can figure out how to sew the darn thing.

On a side note:  Rob always reads my blogs and was quite embarrassed by my glowing accolades of his caregiving.  He thought maybe I should mention his latest faux pas with Mother's Day.  I reminded him that being absent that day due to fishing and a poorly assembled bouquet of flowers picked from the neighbor's garden does not diminish my love for him (Okay, maybe I was a bit miffed about the whole ordeal, however, I should remember white knights do occasionally slip off their horses--but they always seem to climb right back up and resume their charge).

Despite his forgetfulness of the big day he still deserves extra hugs and high fives for being a super duper hero--in spite of his lack of any flower arrangement abilities/Mother's Day priorities/breakfast in bed would have been nice, etc. etc. etc...(I'm over it, really I am).


Thanks for reading # 524 of 7777.









Wednesday, May 17, 2017

#523 Just Write/Right


                                                            Bronte Sisters


I'm just going to write because I cannot help it. 

Charlotte Bronte
                                              Read more at: Brainy Quote Charlotte Bronte
  

Aha!  Here's a portion of an email I received today from Healthline that put a big old smile on my face.
  "We'd like to let you know that you've been chosen as a winner for our Best Blogs 2017 in the Metastatic Breast Cancer Category. You can see the article here: http://www.healthline.com/health-slideshow/metastatic-breast-cancer-blogs

One of the best blogs of 2017 from Healthline.  Wow! is all I can say. Thank you to this organization's kind words and encouragement.  It certainly makes getting back to the computer a little easier especially when the writer's block flops down and glares at me with its beady eyes.

Putting the pen to the paper (or in this case, fingers to the keys) has provided me several different avenues ranging from comfort of spreading the MBC word, to angst.  Either the idea is there or it is not; and when it isn't--nothing makes sense and my hands wave the white flag of surrender.

Other days I feel a tad like Charlotte (not in the same range of talent, but I digress) and can not get the words down fast enough.  So much to say and so little time.

But today--I will steal a portion of Sally Field's academy award's acceptance speech--"You like me, you really like me"!  It is a huge ego boost for me to be recognized and realize that I am making a difference to those women and men living with metastatic breast cancer.  Thank you Healthline for making my day!

Thanks for reading #523 of 7777.












Thanks for reading # 523 of 7777.

Sunday, May 14, 2017

#522 Reaching for the Stars---YOU!


Thumbs up to you if you join us!

Calling all advocates or "wanna be" advocates or "I'd like to help but don't know how" advocates in Wisconsin.  Yes, I'm talking to you today.  Rob and I have been stewing a while on a plan for swimming this summer and how to reach out to others but we need your help.

We are looking for a few ____________(fill in the blank with --good, kind, generous, wonderful, marvelous) human beings to offer their lake homes with a place to swim, people to educate and purses to contribute to the stage iv fund.  It is quite simple, really.  Set up a date with us, contact your friends on your email list and on the lake and I'll swim and share information on MBC.  You provide the people and we will provide a caterer for a lovely evening or afternoon get together.  We may even convince our UW Carbone Cancer researchers to speak and share their knowledge.

Oh, so you don't have a lake or friends with a lake?  No problem.  I don't need water to spread my message.  Just have a cocktail/luncheon/whatever meal you want and I will provide "entertainment" with some graphics about MBC.  I know it doesn't sound terribly amusing but I will make sure your guests will feel that are making a contribution to a worthy cause.

Our reasoning behind our shift in venues is we have had many "asks" of our friends and family to contribute and they have been extremely generous but we need to expand our circle and find others to support us.  We will give you all the assistance you need to make this successful because if it is successful for you imagine what it will be like for the funding that would come in for MBC.

Please contact me about details on how your lake or your friend's lake can be party central for getting the word out.  It will be a good time had by all--guaranteed.

Thanks for your consideration and sharing of this information.  The more we reach the more we gain.

Really and truly can't commit?  Please go to UW Carbone Cancer Center and donate.  Trust me, today on Mother's Day, you will be making a difference.

Also, thanks for reading # 522 of 7777.



Wednesday, May 3, 2017

#521 The "Unrant" Rant



This is not a rant. Trust me. I've ranted enough to know one when I write one.  This, instead, is a plea.  I would get down on my hands and knees if you could see me because it is that critical.  It is a plea for all noncancerous robust women and men to take up our cause.

I know you are probably as fit as a fiddle and cancer is the last thing on your mind but guess what? It was not on my radar either.  How could this disease creep into my healthy lifestyle when I was too busy running, working out and eating a (mostly) nutritious diet?

Well, my friends, this ugly disease can raise its monstrous head and attack when you least expect it.  That is why I am pleading with you to get on board today to take action with us.  Those of us with metastatic breast cancer number between 150,000 and 250,000 and many are too sick to rally about anything except getting to the next day.  We need your energy and your drive to help us out.

One out of eight women will be newly diagnosed this year and one out of three will metastasize either as de novo (first time breast cancer) or as a recurrence.  I was sitting in the same place you were six years ago helping out friends who were diagnosed and mentally counting the people I knew figuring the one out of eight ratio had been reached.  I was on easy street or so I thought--I was on the "right" side of the statistics.

WRONG!  Easy street just hit a dead end and bingo, here I am getting thumped by the cancer bomb--twice.  Was I interested in advocating for those with breast cancer before the bomb went off in my body?  Of course I did walks and sent donations when needed but to stand up beside women living with this disease and advocating for them?  I will admit it was the furthest thing from my mind.

My request to you is to please help us.  Help us advocate for more research, better health care and larger chunks of money to go directly into finding a cure. Sixty percent of the population knows little to nothing about metastatic breast cancer.  We need more voices spreading the word screaming from sea to sea so legislators and other government officials hear us.

Get involved, ask questions.  Let's stop 113 women and men from dying every single day.  Not to scare the pants off of you but the life you save may be your own.

Here are a few ways to you can get involved:
1. Go to www.onewomanmanylakes.org for information on writing to our legislators about increased     funding for NCI and NIH.
2. Donate to UW Carbone Cancer Center
3. Sponsor a swim (I'll join you) and do your own fundraising
4. Share this site or the One Woman site to your friends.
5. "Like" my One Woman page on Facebook and share
6.  Talk to others about our concerns of being ignored

That's it for now.  Many thanks for the shout out.

Thanks for reading #521 of 7777.

Tuesday, April 25, 2017

#520 What's an Outlier?

These are the statistics we face as we dream of becoming an outlier.


Outlier— according to Merriam-Webster dictionary:  a statistical observation that is markedly different in value from the others of the sample.  

What does that mean to me and why does it continue to be such a profound word in my vocabulary?  

To put it simply, an outlier is everyone’s dream if you are living with metastatic breast cancer.  A question often asked is could I possibly be one of those who defies the statistics and lives beyond the median three year life expectancy?  

When my first treatment passed the average length of time most patients take the drug-- seven to nine months--the word, outlier, crept into my world and gave me hope that maybe I could join the most sought after club in the universe.  

Unfortunately, despite my successful 26 months on this drug, it wasn’t the miracle I had hoped it to be. The next line of medications may prove to be a successful marvel and hold this cancer at bay for many more months but one never knows. It is always a guessing game, this cancer world we live in, but that four letter word, HOPE, continues to raise its beautiful head as we cling to the possibility that the term “outlier” will attach itself to our name.  The greater hope is it will some day become obsolete in our vocabulary as some brilliant researcher will cry, "Eureka! I found the cure for cancer". 

While perusing the internet, I found an article from the NY Times about an outlier,The NY Times.  Was there some type of magic behind her long existence and can it be bottled to be shared?  A spoiler alert--nope.  Doctors have no idea why she defied the odds when so many succumb to cancer--no matter what kind.  

So we metsters continue to read about the longer living individuals and yearn to be part of their group.  When a survey is sent out and requests those living more than ten years with MBC to reply and share their stories, I am thrilled to read all about them but admit the green machine of envy rising up.  Maybe someday I will be filling out an outlier survey and will encourage the newly diagnosed woman to dream about reaching this goal too.  

Please help me and others add a new moniker to our names--outlier--by donating to UW Carbone Cancer Center today. We are forever grateful.

Thanks for reading #520 of 7777.


Friday, April 21, 2017

#519 Carpe Diem!




Having a moment today--a good one--reflecting on the week in paradise with the family.  It's one of those unparalleled experiences forever stored in my memory bank and in my heart.

Planning this amazing trip began with a couple of simple requests on my part--actually they were quite complex but it didn't deter the king of logistics--Rob. He loves a challenge and this one could be rated a ten on planning a complicated family excursion while coordinating nine people to all end up in the right place at the right time.



It began last fall when, on a difficult day living with this disease,  I sweetly requested (or whined, depending on who is the story teller) about returning to Kauai--an island that feels like home.  Rob immediately agreed but then I hit him with the bombshell of inviting the entire family join us.  If I remember correctly, he gulped and responded, "Of course, dear, that's a lovely idea" (Remember who's telling the story). Orchestrating this adventure would tax even the best logistical guru, but my beloved husband came through hitting "the ball out of the park" making it a whale of a good time for all (Get it, whale of a good time?  Too much sun and fun is causing chaos with my sense of humor--or lack of...).

I can happily report that all went well without any hitches or catastrophes and this number one husband has also moved up to number one dad by his children.

Some of the highlights:
Family time--24/7
Grandbaby holding
Watching sunsets on the lanai
Swarming parakeets gathering at dusk
Game playing every single night
Dolphins leaping
Eating, eating and more eating
                                                                         Snorkeling
Hiking to the canyon


















Devouring shave ice almost every day

Whales breeching
Flowers blooming
Boogie boarding
Surfing the waves
Sand building
Volleyball in the pool


Creating memories for a lifetime
Walks to the "Horn"
Ukulele playing and singing
Seder meal
Birthday celebration

















An exhausting but exhilarating time was had by all.   Here's to fine memories and an abundance of family vacations together for many years to come.

Oh, and you can make this happen by going to UW Carbone Cancer Center and donating to the brilliant researchers working on a cure.  A whale size thanks!

Thanks for reading #519 of 7777.


Saturday, April 15, 2017

#518 FAMILY




This is absolute joy in paradise as I spend a glorious week with the entire family.  No time to sit on the computer so will end it with a picture worth a thousand words.

Help me make sure I will have many more vacations with this lovely group of people.  Go to UW Carbone Cancer Center and donate today.  Thanks from all of us.

Thanks for reading #518 of 7777.