Thursday, September 28, 2017

#536 Can You Hear Me Roar Once More?




We are days away from October and you know what that means--BREAST CANCER AWARENESS MONTH.  The stores are filling with enticing pink stuff that will make you feel good about supporting those of us living day to day with this disease but I implore you to think twice before plopping down your hard earned money if you think it will help.

Investigate first on who will benefit and how much of your money will go to research. I admit I am biased but it is now time to focus on what kills us--metastatic breast cancer. We get ONE day this month (October 13) to scream outrage against the minuscule 7% of funding directed for us. Unfair?  You better believe it so go to my website at One Woman Many Lakes  and discover why research is our best hope.

Next visit this link It's about time MBC.  If you have followed my blog you've heard my story so I encourage you to read about the remarkable women and men navigating through life with metastatic breast cancer.  The stories will touch your heart about the unifying theme of the importance of more time with their families.

Now back to my ranting.  Please, please stop with the boas and the underwear and the do dads that declare all purchases will support those with breast cancer.  Give directly to a research organization and be assured your donation will save lives.  Let me suggest you check out the More For Stage IV fund at the UW Carbone Cancer Center who gives 100% to the researchers so they can focus on giving us that precious commodity of time.

 Scream loud and often is my new mantra so hear me roar once more ( and feel free to join me).

Thanks for reading #536 of 7777.

Wednesday, September 20, 2017

#535 Across the Pond--The Ireland Swim



You can see one of the swans.

Well, I'm back after a mini break and a jolly lope through Ireland.  A quick recap:  Couldn't drink the Guiness (gave me tummy troubles but Rob certainly made up for it), swam in Lough (Lake in English) Corrib, now have more knowledge about hurling, gaelic football and rugby than the average American, biked on Aran Islands and overall had an amazing time.  Those Irish lads and lasses certainly know how to treat foreigners--everyone is a friend--we should all aspire to their kindliness and all around good nature.


Did I mention the swim? Check this one off the list of freezing one's you know what off.  Our driver, Don, was a champion locating a wetsuit and finding a good entry point for me complete with a scenic view of a castle.  Of course Rob was the gallant knight traipsing through the brush trying to pinpoint my exact location since a boat was not available for him to crash...I mean... lead me through the water.  I was close enough to shore so never felt in danger of drowning but the best husband ever thought it was necessary to try to follow me from shore--where there was no path.  So, up and down he ran and popped out wherever there was an opening.  My swim was no more than 3/4 of a mile yet he must have run close to five miles over and around the hills.

The water was crystal clear and with the first face plant I realized the frigid 59 degrees would necessitate a speedy swim.  As I left the shoreline with the Ashford Castle in view, two swans parted their way and I swam between them--felt like scene from a movie.  Despite the dramatic beginning it was an uneventful swim, however, I did see a vast amount of garbage beneath the water's surface.  The Irish version of the Lock Ness monster in the form of a bike, poles and various other articles.  People--universally--are sometimes inconsiderate stooks (Irish word for fool).

Yes Rob, I'm still here!
Meanwhile, as I progressed through the almost frozen lake, Don was at the designated end point frantically waving his arms so I could see the direction I should be headed.  No worries that I would keep going since by that time my feet felt like they were beginning to turn green (The Irish blue) and swim number 35 was soon in the record books.

The craic (fun) of a good day for us, no rain at that moment; and while I only had Don cheering me on (and, of course, Rob running through the bramble), another priceless memory in Ireland was stored in our brain's hard drive.

Thanks for reading #535 of 7777.

Sunday, September 3, 2017

#534 THANK YOU!

The brave swimmers giving a thumbs up to our supporters.
Today I am sending a big shout out of thanks to our many faithful friends for our August burst of fundraising.  The total amounts are not in yet but we know it is substantial and will provide significant funding for our dedicated researchers.   Imagine 100% of all your donations going directly into research!  Thank you for being part of the solution and making a difference.

We also extend an abundance of gratitude to Teri and Dave Mills, Cathy Waskowski, Di Huibregtse, Kris Euclide, Karin Mahoney and Adam Balin and the Fossum family.  They opened their hearts and homes to provide us with an avenue to spreading the word and raising money.  We were fortunate to have some of the finest researchers from the UW Carbone Cancer Center to join us and explain their work in the labs.  All events were inspiring and rewarding.  

Another act of selflessness and extreme thanks goes out to Liz Van Kampen and the crew at SprintPrint,  They have been unbelievable supporters providing us with numerous fliers, brochures, signs—you name it and they are on it.  We have never heard them say “No, we can’t do it”,  and for that we are forever grateful for their generosity.  

You can continue this gratitude gushing by donating to www.onewomanmanylakes.org.  Our rock star researchers will be doing flips when they see the money rolling in!

Thanks for reading #534 of 7777.

Friday, August 25, 2017

#533 Unfair Hair and Other Injustices


Everyone likes a cute cat picture!

Life is unfair! I often hear that phrase when people learn of my diagnosis.  "How does this happen," they ask? "You have taken good care of yourself, maintained a healthy diet (they have never seen me devour a bowl of ice cream) and have been an exercise freak."

Yes to all of the above but guess what?  Cancer will jump out and wrestle you to the ground no matter what you do.  Yep, life can be cruel and unforgiving.

https://www.pinterest.com/explore/not-fair-quotes/?lp=true
I have been pondering the whole unfair life phrase recently as there have been changes going on that are out of my control.  How unjust can life be?  Women in their prime dying and leaving young children without their mothers is the first injustice that comes to mind.  We were dealt a rotten set of cards and the simple phrase of life being unfair seems to me a vast understatement.

But right now, at this very moment, I am suffering a shallow and vain unfairness experience.  Due to medication that is keeping the cancer cells at bay, my hair follicles have been on a speedy retreat. My slowly balding head is beginning to look like a newborn baby's fine wisps of hair but as a sixty-six year old, it's not quite as endearing. Messy and unappealing like the leftovers of the corn silk ripped off the cob after the county fair is a more appropriate visual.  "Unfair,"  I holler!  I am already suffering from other afflictions so why is this one added to the mix?
https://www.pinterest.com/pin/267823509066068642/?lp=true

Okay, my vanity register is back in check and after searching the internet for "life is unfair" quotes--there are numerous ones -- it looks like I might as well deal with what is.  I remind myself it could be worse--I do have a modest head of hair, I am alive, it didn't turn a putrid green ( not that green would be bad but not my best color). So according to the above quote, "live in what is happening" will (grudgingly) be my new mantra.

If you are still reading I will continue grousing about one other wrong--for today.  Weight gain.  This treatment is also known to pack the fat on and there have been disappointing reports of 20-40 pound increases.  Why oh why?  Are we not suffering enough from the aches and pains to strip of us one more thing--looking good in a bathing suit?  It doesn't help to hear that all this extra weight will be beneficial when we need it in future treatment sessions and start the slippery slope down the tube.  The rate I am going methinks I will need a bigger tube.

Whine, whine, whine.  "Enough!" My mother would have shouted.  Read the bottom quote. Someone must have parroted it right from her mouth and she would have been right...again.


http://quoteaddicts.com/i/48792
Thanks for reading #533 of 7777.

Monday, July 31, 2017

#531 Cancer Fatigue--A Physical and Mental Syndrome


A major distraction!

Fatigue.  It the kind of tired that "stops in your tracks cause I can't go anymore" feeling unlike any other lethargy I've ever experienced--until PCD (post cancer diagnosis)

This syndrome has been delivered via the medication that is prolonging my life.  I'm not complaining, well, yes I am; but when it strikes, collapsing in a nearby bed is the only option until I can return to my "normal" way of living.  As the Brits would say, "carry on" and I do with a grudge against this malady I must frequently endure.

Which brings up another type of fatigue I am experiencing.  Cancer fatigue.  After five years of living with this disease, I am tired of it being forefront not only in my body but also in my mind.  My initial diagnosis was a year of hell with chemo, radiation and surgery and the constant side effects.  The next year was a recovery year where every day I felt my body being restored until twenty months later I was slammed with a metastatic diagnosis.

It has now been five and a half years of a thinking breathing living cancer existence and I am fatigued by it all.  Not only is it physically wearing but the mental part is completely exhausting and distractions do not always trim those thoughts from this overactive brain.

When I do manage a reprieve from...OMG, I HAVE CANCER... I cherish those moments until they creep back into the corners of the brain mass triggering a double whammy of...OMG, I HAVE CANCER...and then it begins again.  

I have learned the best way to counteract that state of almost no return, surprisingly enough, is to keep advocating. Unfortunately it is a double edged sword--think about cancer and brainstorm ways to raise money; or not think about cancer and banish those ever present thoughts from my mind ( or will they still linger taunting me more?).  I choose to face this *&%^%$ head on--my way--and it does help.  It gives me hope that there will be a breakthrough and our fundraising and screaming efforts are getting the message out.

As my astute husband constantly reminds me, "Ride the horse in the direction it is going", so I will get up on my stead and ride until our researchers are confident they can declare metastatic cancers chronic and not a death sentence.  It is what I can do to remember Heather, Maggie, Beth, Shannon, Mandi and on and on--all champions of the cause.

Fatigue--bring it on--nothing like a cat nap and Bam! once again I am ready to rally.

Of course I can not conclude this blog without an appeal to donate to our superhero researchers at UW Carbone Cancer Center.

Thanks for reading #531 of 7777.




Tuesday, July 25, 2017

#530 Just Keep Swimming



It's been a wet summer!

With all this rain this summer I have been able to squeeze in two swims in an actual lake and not resort to one of the massive puddles located around town.

The first swim was delayed a day due to the above mentioned downpours but was completed on June 29th in Lake Mendota.  We had seven brave swimmers fight through the weeds paddling along until we found a relatively clear area to do the mile swim.  One of the highlights of the day was having my two Michigan cousins and two women from Florida join me on spreading the word.

The main highlight of the swim was the abundant number of donations that generated a whopping $4,700 in donations and, along with the match, contributed a ginormous amount equaling $9,400 for the researchers to do what they do best--finding a cure.  Thrilled beyond words at the generosity of everyone.  We are making a difference!

The other swim was in Echo Lake in Acadia National Park in Maine.  Saying it was a lovely place does not quite capture the beauty of the area in a few words. Clean crisp air enveloped us as we made a brisk dash in the limpid sixty degree water.  It was not a long swim--we were on a vacation time constraint and the lobster dishes were calling our names.  As we hurriedly exited the water we discovered a loon making his/her nest in the weeds near shore.  It was a perfect way to end this splendid swim.

If the weather cooperates and the stars all align I'll be swimming in Long Lake, Wisconsin on August 19.  Join me in the water or donate to the swim.  Both deeds would make me very very happy.

To keep me swimming go to UW Carbone Cancer Center and imagine a great big smile on my face with gratitude.

Thanks for reading #530 of 7777.


Friday, July 7, 2017

#529 Ladders Smadders--What were you thinking?

Lots of males climbing and falling off ladders.


When you receive a cancer diagnosis it seems everyone wants to make you feel better by telling you the following declarations:

1.  You could get hit by a bus.
2. A bear could eat you--Heather's favorite.
3. No one lives forever (true, but, unfortunately terminally ill people have a big mark on their forehead).
4.  A meteorite could fall from the sky and wipe us all out
                                                     
                                                    and on and on and on.

You get the idea.  Yes, we all have this one life and possible disasters surround us but as a metster I take great care in avoiding situations that might put my life in any kind of peril.

The latest Gooze incident was a heart stopper and I pause for a moment contemplating all the possible catastrophes we never see coming.  This one involved none other than my beloved somewhat of a non risk taker husband.  He has been my caregiver, my biggest cheerleader, my (fill in the blank with any dynamite adjectives)-you get the picture, he's pretty special; however, once in a while common sense escapes him and this time it could have resulted in a huge life changing mess.

The recap of the story began when I was gone for the day and on my return discovered bloody scrapes on his leg and hands along with a bent gutter and a water soaked deck.  As he blurted out an explanation of his misadventure I realized it could have been much worse but instead of being the sympathetic wife, I proceeded with a lecture on "what could have happened, might have happened; and are you nuts you could have killed yourself" reprimands.

 His first mistake (and there were many) was he climbed a ladder--that is a big "no no" especially if you are terrified of heights.  Do not do it.  Second mistake was I was not here to tell him not to climb the ladder or at least be there to hold the darn thing--he knows better. His third blunder that almost could have done him in was cleaning out the gutters with a hose which consequently drenched the deck rendering it as slippery as your local hockey rink.  He's a smart man--what did he think would happen?

No one was witness to the disaster because it happened so quickly when the ladder's footing succumbed to the slimy wet mess generated by Rob's efforts to get rid of the leaves. Within a nanosecond the contraption came crashing down with poor wide eyed Rob hanging on to it for dear life.  Shaken but alive he regrouped and, if you can believe it, got a different ladder and attempted the cleaning-- AGAIN.

As I said before, $h*t happens and sometimes you are incredibly lucky and sometimes you are not.  This time around he lucked out with neither a bear eating him nor a ladder mangling his body.  Let's hope he thinks twice before he climbs those steps and remembers my wise words about falling from obstacles that could wipe you out forever.  Good grief is all I have to say.

Thanks for reading #529 of 7777.












Saturday, July 1, 2017

#528 Act Now!


From CNN


I recently received an unexpected letter from Speaker Paul Ryan regarding my upcoming swim and wishing me well as I advocate for more funding for metastatic breast cancer.  His acknowledgment of the importance of research is commendable and I appreciate being given a pat on the back for our commitment to finding a cure.

                                                                     However...

Without getting too political (too late) I am responding to him on what it will be like if the current health bill passes the Senate.  We have all been bombarded with the facts--millions will be without coverage.  Our metastatic sisters and brothers are in jeopardy of losing major support to combat the financial toxicity of this disease.  It will be an earlier death sentence for many of us if we can not afford the drugs and treatments that have been extending our lives for a few more months or even years.  Will he hear my response that he can not allow this to happen?  Will he heed the burden this bill will place on families who struggle with lost wages due to this illness but also be cognizant of the skyrocketing price of drugs that we require every month?

We have all witnessed caring communities around this great country of ours who rally around those who are suffering.  Now--this very moment--we must join hands, grab our phones or our computers and write, call and scream loudly that this monstrosity of a bill will not help our fellow human beings.  Please, please, please contact your legislators in Washington and tell them to vote NO.  Tell them to go back to the drawing board and, with charitable hearts, consider their constituents need to have affordable health care and the chance for a longer life without sending their families into bankruptcy.

If you are still not convinced, read this article which goes into detail on where the money is being cut and who will benefit from those cuts-- NBC News on the health care bill.

Did any of this infuriate you at the injustice to so many? No more wringing of your hands.  You can do something about it by going to these websites and locate your state's legislators' names and phone numbers - U.S. Senate: Senators of the 115th Congress and The House of Representatives.  Call and/or write today.  Our lives depend on it.

Thanks for reading #528 of 7777.

Tuesday, June 20, 2017

#527 Happy Cancerversary!


Here's to spending a LOT more time with this man!

Three years. It has been three long years today since I received the phone call that forever changed our lives.  "You have stage iv cancer".  Did it rock our world and put us both into a spin of no return? Of course.  Anytime a life changing experience pokes its head into our comfortable existence makes us suddenly view our own mortality and gasp that this can not really be happening.

Eighteen months after my initial stage 2 diagnosis,  I was deemed a survivor until my fairy tale view of cancer land was slammed into the reality of a free fall into hell. I dealt with this by perusing the internet to find out the good the bad and the ugly of this disease and was not encouraged by what I discovered.  The first few findings scared the crap out of me--three years median life expectancy, no cure, 40,000 die every year, 113 die every day, no cure, no cure, no cure.

The "no cure" clause stopped me in my tracks because with all the publicity on cancer survivorship, I was under the impression if I caught this cancer bugger early, zapped the heck out of it and now, with keen vigilance to any unusual aches or pains, I would be cancer free after my initial diagnosis.

Not quite so fast, I unfortunately learned.  It took me several months to wrap my head around all of this and sort out exactly how I/we were going to manage it--the fact that I could be gone in three years kept echoing in my head.  Nothing seemed hopeful or promising and quite frankly, I was scared to death (inappropriate word to use describing this experience).

The turning point into seeing a better outcome was the fact that research done five or ten years ago is now keeping me alive longer.  New innovative treatments are rapidly coming to fruition and hopefully will move those horrible statistics to a more encouraging playing field for all of us. Research--the word that is coveted by all metsters--is what will determine the next round of ever changing statistics.

Today I mark this anniversary with a quiet celebration thankful to the researchers who have gotten me to this point as they continually search for answers. Their valuable work will again make a significant difference five years from now so my daughter and granddaughter may live in a true cancer free world.

To make this happen for us, please donate to UW Carbone Cancer Center and keep all of us around for many anniversaries to come.

Thanks for reading #527 of 7777.



Sunday, June 11, 2017

#526 Michael Phelps-- Don't Mess With Me!

Michael Phelps


Picture this scene unfolding before your eyes. Two people churning through the waters neck and neck racing to a victorious end with the crowd cheering us on. Who will touch the edge of the pool first--Michael Phelps or me?  It's an unbelievable contest with high stakes for the gold medal.

Okay, that was fake news--the reality is there are no crowds of people at the Oregon pool watching and certainly what transpires never looks like an all out sprint.  What often happens is my easy warm up turns into a ferocious race as the nearby swimmer comes into my range of vision.  Flip, turn and back to the opposite end churning the waters as fast as my arms can go and my legs can kick.  First lap done and I am in the lead, second one he pulls ahead and now it is time to dig deeper and deeper one stroke after another, side by side until...

Nada, nothing, zip, diddily-squat because...

Unbeknownst to him, as he has absolutely no clue he's participating in a pseudo race, he flips over to do the backstroke and I take off realizing the contest is over.  The backstroke vs. the crawl is not conducive to my nonexistent event, nevertheless I still swim off reveling in my triumphant (fake) win.   Being sidelined from any competitive sport has forced my imagination to restore the drive to push myself to that next level even though the poor chap was simply out for an enjoyable swim completely oblivious to the maniac next to him.  

These sometimes difficult, sometimes easy workouts have readied me for my first summer swim on June 28th at noon.  It will be a two mile noncompetitive plunge in Lake Mendota starting at the Wisconsin Alumni Association dock (next to the Red Gym)  in Madison.

Please join me on June 28th as a swimmer, kayaker or a cheerleader.  The UW Carbone Cancer Center will profit from this swim along with the thousands of Stage IV women and men. Let's all get into the competitive spirit and beat this disease both in and out of the water.

On a side note, please follow my Facebook page, One Woman Many Lakes, for updates on weather or water conditions.

Thanks for reading #526 of 7777.



Wednesday, May 31, 2017

#525. Every Birthday is the Best


Best Birthday Gift!

Ahhh.  Birthdays.  If you are lucky they arrive every year on the same day, sometimes the same place, and many times with a gargantuan amount of fanfare.  Mine will be here soon which sent me down memory lane on how I have approached my birthday over the years.

My childhood days were thrilling--cake, ice cream, friends, the center of attention, a year older.  It couldn't get better than that as I anticipated the big day arriving when I would be the one in charge--the one in the center of everyone's universe--for that one glorious day.  Oh! And the presents.  Let's not forget the presents.

Then I muddled through a number of years where, although the day was lovely, it wasn't that breath taking, all about me, kind of day. Time passed and at the exact age of thirty-four,  I had the absolute pleasure of sharing this day with my daughter.  Granted her birth day was a bit challenging to be in labor but the end result of this precious child in my arms was by far the best gift I have ever received.  Nothing tops it or ever will.  (Sorry Rob, not even the Hamilton tickets).

After this birthday sharing daughter grew a little older, my mind was more focused on aging than enjoying the day.  One more year older I would moan and dreaded those years passing by so quickly.  How does that happen--the 40's turned into 50's which turned into 60's.  And look at me. What happened to the looks from my twenties--probably my peak in physical and mental attributes.  Birthdays had somehow become the dreaded event of the year.

Time moved on and when my parents passed away, my birthday evolved into a day of remembering.  Thinking about how excited they were at a new baby entering their family, I began viewing birthdays differently and would be thankful for this magnificent life they gave me. The day turned into a observance of being and the feeling of closeness to the two people who loved me unconditionally.

Fast forward to the present with my birthday just around the corner.  Hallelujah!  I am alive and here to celebrate it is all I have to say.  Cancer tends to put certain events into perspective and years ago, if someone had told me I would be jumping up and down thrilled to be turning 66, I would have rolled my eyes thinking the distant age of seventy is closing in at an alarmingly fast rate of speed.

  But now, on the verge of my big day, I plan on whooping it up even though the number of candles adorning the cake could start a fire--who cares because-- yippee coyote and all that jazz--I AM HERE living and thriving for one more year.

Now---"Wait for it, wait for it, wait for it" ( a reference to Hamilton if you haven't seen it)...

To help make this upcoming day even better, please consider a donation to UW Carbone Cancer Center--My birthday!  It will come close (but not quite) to rivaling the best gift I've ever received.

Thanks for reading # 525 of 7777.


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.






Tuesday, April 4, 2017

#517 Hairy or Not


                                                   "Shoulder length or longer,
 Here baby, there, momma, everywhere, daddy, daddy
Hair, flow it, show it
Long as God can grow, my hair".*

What is our fascination with the golden tresses. We admire those who have them and feel cheated when our own hair does not give us the same satisfaction.  Toss your head around and feel your luxurious mane glide from side to side in slow motion--magical!

Hmmm.  In my 65 years, I think that happened about once when I was still in high school and I'm not sure if it actually did the whole swaying movement--I only thought it did.  Mine has never been in the lush quality or quantity category that we all envy. I would rate it as wimpy fine with a random uncontrollable curl that never seemed to curl in the right direction.

When I went through chemotherapy a few years ago, I was completely distraught at the thought of losing it all--which happened; and after shaving it off I didn't feel quite as devastated as I imagined. However, after months of chemicals flowing through my body the stubble began to grow and I swore I would never cut my hair again picturing me as Rapunzel with golden locks down to my knees.

Didn't happen.  After it began to grow back in I remembered the weak texture, and with the added chemo toxicity, the quality didn't improve.  Mid chin length is what I settled on and it suited me fine for a while.  Looked okay but it was a pain to blow dry every day without stunning results and was a constant reminder of the after effects of the drugs.

After thinning again because of my current medication I made the decision. Short was going to be the new me.  It took a bit of an adjustment but now when I get up in the morning it is a quick shower, towel dry and I am off saving the world or whatever is on my agenda for the day.  Time is precious and an additional fifteen more minutes does make a difference.  Besides, I remind myself (which sounds like my mother), beauty lies within us and quit being so shallow.  At least that's my justification when my gaze settles on someone with that "shining, gleaming, streaming, flaxen, waxen"*  hair and I feel the jealousy bug popping its head out.

I say, unite short hairs and embrace the young sleeker look and think... sassy. That's what my new do makes me feel. Although I still admire those with the endless flowing tresses and often envision a luxurious head of hair, this short cut is working out just fine.

Thanks for reading #517 of 7777.


*Metrolyrics (Lyrics to Hair)

Wednesday, March 29, 2017

#516 Not One More


Champagne Joy

Two deaths noted in less than a week on Facebook.  Unless you are friends or family or a metastatic sister you may not have heard the huge sucking sound as these brave tireless workers for the MBC cause left this earth.

I did not know them personally.  One need not physically meet any metster face to face to connect in some invisible way.  There is a tight bond that weaves us together.  When we read about another living and thriving "sister" ripped from us it follows with a punch in the stomach that leaves us dizzy and breathless.  Not fair, not fair!

They were both relentless fighters for more funding for MBC.  Champagne Joy ( love the name and the person behind it) shouted and screamed from the rooftops.  She founded the group #cancerland and was an outspoken member of our community.

Beth Calabatta was a swimmer, outstanding athlete and compassionate human being.  We had connected on several occasions to join forces to swim for MBC funding.  Unfortunately on my part it never worked out but I continued to follow her swimming escapades and fundraising techniques.  Actually, she was a outstanding swimmer and I might have been a bit intimidated by her strength and prowess in the water but that wasn't the reason we never met.  It was one of those moments you put off until the timing is right---which it never seemed to be--and now she is gone.  A lesson learned to do it today, not tomorrow, but now.  Read her latest blog entry for insight on this incredible woman,  Dying is about Living.

These are only two mentioned of the 791 who will die of metastatic breast cancer this week.  The names could go on and on.  Each person loved by many and lost forever.  Outrage! Where is the outrage?  Research must be a top priority on the national scene and our elected officials need to hear this from all of us.  It is our best hope to have more time with our families.   Funding for researchers is what we need.  We CAN NOT let one more person die without making that effort to give scientists more ammunition to tackle this disease.

As Champagne said, "I won't leave this earth until I see the beginnings of change." View her Facebook page and learn about this formidable woman https://www.facebook.com/champagnejoy.  She began something the rest of us need to finish--finding a cure or at least making it a chronic disease before one more bright light goes out.

Today I am feeling saddened, vulnerable and pissed.  Wake up NIH, wake up NCI, wake up women and men who are all as susceptible as Champagne and Beth.  Cancer strikes and does not care about your social status, economic status, whatever status--help us because it may eventually benefit you or your loved ones.

Go to UW Carbone Cancer Center  and donate.  Let's make sure we are beginning the change for a cure.  Already donated?  Take action --please email your representative and senators--https://www.usa.gov/elected-officials-- and demand increased funding for NIH and NCI.  Do it today and then ask twenty friends to do the same.  Together we can make a difference.

Thanks for reading # 516 of 7777.

Monday, March 20, 2017

#515 Are We Crazy?


The old--stay tuned for the new.

To remodel the kitchen or not? That is the question floating through our house at the moment.  The problem isn't if it shouldn't be remodeled. It is a 25 year old kitchen with cupboards that were cheaply made and, after the passing of time, they are looking pretty rough around the edges.

Rob and I have been discussing this at length--invest in the house and enjoy the beautiful surroundings for many years or live with it as is until we are shuttled off to a retirement home.

What the elephant in the room isn't shouting is if I will be around to appreciate it for the next 10- 15 years or will this disease progress quickly and... well, it could get complicated.  We don't discuss that angle.  Instead we throw ideas back and forth on increased value of the home, owner benefits--all those "logistical" questions based on if we should proceed with this foolhardy idea; or could it actually be a valid move in the right direction?

The bottom line for me is will I be around X number of years to get MY value of out it?  Will the last knob get screwed in as I lie in the next room feeling screwed out of a longer life or will I be drinking my morning coffee reveling in a more efficient kitchen design for many more years?  Right now I'm feeling pretty confident of the latter scenario.

To do or not to do--always an unanswered question as we carefully proceed through life making decisions based often on financial advantages and not always taking in consideration our longevity.  My gut feeling is to bite the bullet and get it done.  For once I would love to look forward to opening that aggravating lazy susan cupboard and not have it collapse throwing the contents topsy turvy all over the floor.

Worth the risk of not enjoying it for an eternity?  Cancer takes another back seat on this one as my vote is yes; and I do believe I can convince the "best ever husband" the same.

Stay tuned for more home improvement adventures.  Oh, and by the way, to keep me sipping my coffee in the new kitchen, go to UW Carbone Cancer Center and donate.

Don't forget Our call to action:  As the health care legislation is presently working its way through Congress please email your representative and senators--https://www.usa.gov/elected-officials-- of our need for protection in health care affordability.  Do it today and then ask twenty friends to do the same.  Together we can make a difference.

Thanks for reading #515 of 7777.

Wednesday, March 15, 2017

#514 Don't Let A Road Block Your Way


A slight glitch of plans in the road.
Plans:  a method for achieving an end
b :  an often customary method of doing something :  procedurec :  a detailed formulation of a program of action
d :  goal,  aim

Plans. We make them, we organize them and we coordinate them; and sometimes they are altered on a whim or a catastrophe or for no apparent reason at all.  Having cancer often makes planning a precarious undertaking but can also be gratifying to help us look forward, onward; and the best is when our intentions are fulfilled.

Due to my continuing saga of health issues, our plans to Washington DC were on, and then possibly on hold, and then back on again.  I hate the uncertainty this disease renders me when my objective is to get from point A to B without interference.

A little help from friends gets us through every time.

Plan or not to plan? That is the million dollar (or plane ticket) question.  My conclusion--do it, get insurance if need be, use the cancer card to get out of things, whatever it takes-- just do it.  Cancer should not put life on hold waiting for the day when the body is motivated to cooperate.  It's stupid cancer, for crying out loud, and I for one will suck it up and keep planning and doing; or even repair a road with a few rocks and hardy friends, if need be (See the above picture), to get to my destination.

Phew! Live it up is my mantra so it is off to grand parenting duties in Seattle, family fun in Hawaii and anything else that might hit my fancy.  Time is a'wasting and those adventurous moments must be seized, cherished and above all, treasured.

With this short blog, you have plenty of time to go to UW Carbone Cancer Center and donate so all of us can fill our calendars with the luxury of carefree escapades.

Thanks for reading #514 of 7777.




Friday, March 10, 2017

#513 Voices Heard on the Hill

The two of us, Speaker Ryan and our son, David

Well it's over.  The much anticipated meetings with the big wigs on "The Hill" are in the history books and the verdict?  Time will tell but here's a brief recap of what transpired and how the day unfolded.

First of all, let me begin with a caveat about life as a metster and our days that are the feeling good, conquer the world kind of days; or the down right rotten ones-- leave me alone kind of day. We never know which one will present itself until our feet hit the floor.

Unfortunately for me the BIG day would have better spent in bed than traipsing across Washington DC but, alas, here we were and the stakes were too high to be a no show.  The morning began with a sleepless night due to my ongoing enemy--insomnia.  From there it continued to deteriorate into a long, and literally $hitty day (TMI- I won't go into details but nearly every bathroom was visited in both the House and Senate buildings). Oh, the joys of the side effects from medicines that are prolonging my life...

But I digress.

The morning meetings with the legislators went smoothly with their aides and Senator Baldwin indicating approval regarding more funding for research.  How could they contradict me as I described my limited time here and my mission on protecting my children and grandchild and all future generations from this ugly disease?

My final meeting was at the Capitol for a private session with Speaker Ryan. He agreed that supporting research and curing cancer must be a top priority in our country. I reminded him of the fact that we do not have the luxury of years or even months to wait for the debate on where to find the money.  I also informed him of his and our country's moral obligation to solve this "problem" quickly.

Was he listening?  He assured me this was an uppermost concern for him as he had a family member die of metastatic breast cancer.  I expressed my dismay that 600,000 Americans will die from cancer this year--many more than any terrorist attacks. He nodded in agreement.  Rob (the true genius behind all these meetings and best husband...ever) pointed out our concern of the present administration's beliefs on reducing the need for science and research. Ryan responded about being the ballast on the boat driving research forward and would not let that happen (No political comment from me).

One of the biggest concerns for the cancer community is what will happen to our health care and the financial toxicity that we face with this diagnosis. Again, I was assured that we will be protected (Really, I mean...REALLY?).

So, a successful experience or a bust?  The verdict is still out until we see NCI's funding increased and our health care becomes affordable.  Stay tuned.  With a brief 15 minutes of Speaker Ryan's time, the hope is my story and those of you who responded to my request for advice will prompt him and others on the Hill to do the right thing.

Thank you for all your positive vibes and good wishes.  My voice was one small whisper in everyone's ear but I am hoping it will resound into a chorus of shouts from all of us.

Our call to action:  As the health care legislation is presently working its way through Congress please email your representative and senators--https://www.usa.gov/elected-officials-- of our need for protection in health care affordability.  Do it today and then ask twenty friends to do the same.  Together we can make a difference.

Thanks for reading # 513 of 7777.

Tuesday, March 7, 2017

#512 The Update on My Big Date




The meeting is coming!  The meeting is coming!  In two days we will be in Washington DC convening with our legislators and Speaker Ryan speaking to them about metastatic breast cancer and all Stage IV cancers.  I will have the ear of the #3 person in the country and I don't want to blow it.  Pressure is on and I'm feeling like the kicker in a tied football game--hit it and you are the hero--miss and you are in the doghouse.

To make sure I cover everything I want to say in my short 15 minutes with the Speaker, I asked the metastatic community through the closed Facebook pages to give me advice...and the words began to flow.  Over 150 comments came in ranging from: "Tell him your story", to "Don't wear pink--wear black", to "Research must be a priority"; and most often expressed, "Make health care affordable.".  All were both heartwarming and heart wrenching ("I miss my mom every day").  I also heard from non cancer women offering support as they could some day be in this cancer hole without a cure in sight.

How could I let these voices go unheard--they were profoundly expressed and affirmed what we all want--more time.  Thanks to modern technology Rob copied and pasted the comments on twelve sheets of paper (removing all names) and sent them to the legislators and Speaker Ryan's office.  Let them read and hear our voices and our outrage at being ignored.

Stay tuned next week when I can report what happened.  I'm not expecting any miracles or huge revelations on his part but maybe, just maybe, when a bill comes up regarding more funding, he will hear my voice in his ear about our country's moral obligation to protect all citizens--especially those who are living/dying with this disease every single day.

As always, keep sending the donations to UW Carbone Cancer Center so if our government doesn't make it a priority, we can assure these dedicated scientists support towards finding a cure.

Thanks for reading #512 of 7777.