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.




Tuesday, February 28, 2017

#511 La La La La...I Feel Great!

Hiking on the top of the mountain


I am completely stumped this week to come up with a blog entry.  Usually I can wiggle something out of my brain but...nope, not a thing is jumping out at me of what to say.

After thinking about this dilemma, I have concluded that it must be a number of reasons why I am void of words tonight.  Here are a couple of thoughts in no particular order.

1. I feel great--no pains or aches or worries--finally.
2.  Rob has been behaving himself and hasn't created any type of comedy routine I can report.
3.  Kids are moving through life quite nicely.
4.  Grand baby, well, I could write volumes about her but will spare you.
5.  Some big meetings coming up with legislators and the #3 man in the White House but will wait until it is over.
6.  No issues with anyone that I can think of offhand.
7.  I'm hiking and swimming; and did I mention I feel great?
8.  Life feels normal for a change.

And that's about the best summary of why I am in a writer's block funk.  No problem because this feeling of floating along like a La La Land movie is pretty darn good and I can't ask for anything more than that.

Now for a gentle reminder to keep me in this writing funk (it's okay, really) is to donate to UW Carbone Cancer Center.

Thanks for reading this non blog of a blog #511 of 7777.


Tuesday, February 21, 2017

#510 Surprise, Surprise!

The two of us after the surprise

Surprises come in all shapes and sizes and least when we expect them--hence, that's what defines a surprise (more later on my brainless, and oh so obvious, declaration).

Lately it seems I've had my share of "not so grand" surprises clobber me.  It began with the first bombshell from the suspicious mammogram. No, it can't be cancer because that doesn't happen to healthy old me...surprise, yes it does.  Scans revealing progression--the surprise was in my denial the cells were still behaving themselves.  Surprise at the negative reactions of some people when they find out I have metastatic breast cancer ( Don't run from me, I am not contagious).  The white blood count surprised me when I was feeling robust; and low and behold it was in the pits.  Surprise from the response of the last series of injections that left me bedridden for two weeks.  Enough of these bombshells. According to Jane Austen Emma, "Surprises are foolish things.  The pleasure is not enhanced, and the convenience is often considerable."  I'd have to agree with her.

Until...

Along came one of those surprises that bowled me over leaving me speechless and dumbfounded but thrilled with the outcome.  The story, which will be told for years to come, began three weeks ago between Best Ever husband, Rob and my super sneaky and fabulous sister, Susan.

A few weeks ago, I had a terrible reaction to the hormone injections I receive once a month and, as a result, have been in considerable pain.  Super sneaky Susan contacted BE husband about coming out to cheer me up and, in her words, "While we're at it, let's keep it a secret" (She didn't realize the amount of pain killers I was on so, in my defense, it wasn't too difficult--but I digress and also making excuses).

With friends in on the scheme, they arranged my ride to the doctor's office while Rob covertly picked Susan up at the airport.  Meanwhile, these so called trustworthy friends boldly lied to me about the need to head directly to pool 8 before going home.  Naive me never had a clue.  Walking to the pool I searched for our friends and saw a woman across the way smiling at me.  I distinctly remembered registering in my brain how familiar she looked--cousin Liz, I thought--but kept cluelessly walking towards the couple.  Friend, Colleen, had to point out that Rob was there--didn't even see him --when this familiar/unfamiliar person stood up and said hello.  Suddenly I realized my clever as a fox sister had pulled the ultimate prank on me.

Both of them, without me even remotely suspecting anything, can be crowned Academy award winners of all as the instigators behind the biggest and best surprise...ever!  So, Jane Austen Emma, I guess all surprises are not necessarily foolish things.  Yes, I did feel a tad daft for being completely bamboozled, but it was well worth the end result.  Thanks, sneaky Susan and wily Rob.  You got me!

Of course, to celebrate surprises go to UW Carbone Cancer Center and donate so my sister and I can continue shocking the britches off each other. It's my turn to get her back!

Thanks for reading # 510 of 7777.







  

Tuesday, February 14, 2017

#509 A Vote For Greg is a Vote "Garding Against Cancer"



Working together is what we do to make sure cancer not only takes a back seat but gets kicked under the bus.  The UW Men's basketball coach, Greg Gard, has a campaign under way through ESPN supporting researchers by providing them with more resources to make cancer disappear or at least renders it to a chronic condition.  That is our ultimate hope; and being generous philanthropists, they are willing to work towards that reality.  "Show us the money, ESPN" and let's make it happen.

You can do your part by going to the website (below) to send Greg on to the next level of funding.  It is so simple I even did it-- once a day--takes less time than brushing your teeth in the morning.  Garding Against Cancer--one more way to make this playing field fair for all of us.

Sink a three pointer from your comfy chair and vote every day until he wins the big one. All you need to do is click here-- Vote for Greg Gard and it will then direct you to sign up for ESPN. Next, find Greg Gard's name and push the vote button.  Bingo!  You are done.  Oh, and no worries-- it won't cost you a dime.  Trust me, it is so easy and will make a significant  difference for our researchers at the UW Carbone Cancer Center.

After clicking on Greg's site, go to mine, More For Stage IV , and make a donation to further increase the possibilities to finding that elusive cure. It's there; and with more funding and your help this dream could win the most humungous prize of all.

Thanks for reading #509 of 7777.

Monday, February 6, 2017

#508 Let The Good Times Roll

Urban Sports Talk

This, my friends, is a happy post. One of the happiest posts I've written in quite a while.  What is the basis for all this delight?  Life continues on and on and on; and right now I am smack in the middle of it.  That's it.  Nothing more but ecstatic that I'm part of this universe.

If you remember the past few posts have had me whining about the literal pain in my neck and woe is me as I struggled to manage the havoc this new debilitating condition had rendered me.  Yes, this menacing pain has created havoc on my daily activities and has dealt me a poor excuse for an acceptable quality of life.  But, enough is enough. It's now "hi ho hi ho", it's off to life I go.

Leaving this merry old tune aside and speeding the message of good cheer along-- the story is the onc doc upped my pain patch to a new high which then propelled me into this feeling of elation. (On a side note, these mega pain killers may have led to this euphoric post but I digress).  I know, I know, it is not a cure and without this "bandaid" I'd be back in the fetal position moaning and groaning but for right now--let me say that again--RIGHT NOW--I can function like a normal (?) human being.  This makes me jumping for joy after the twelve days of hell that enveloped every cell in my body.

The stupendous news is that life really is not only good but amazing and I will appreciate each pain free moment with more gusto than I could ever imagine.  Heather McManamy's mantra was "Every day matters".  I understood it to a point where, yes, I do have a terminal disease and live every moment to its fullest; but I have not had extreme pain and had not personally experienced the horrible underbelly of what this despicable disease can do to fully be grateful for living a torture free life.

I'm there now and will forever acknowledge those good days when they roll around.  Not to sound like Patty the Preacher, but I would suggest that you ( especially those without cancer) revel in your good days--even if they number 365 this year.  Enjoy, relish, luxuriate in, adore--all of the above--and savor every minute.  It's the best gift we can give ourselves.

To help me keep reveling, go to UW Carbone Cancer Center and donate, donate, donate.  Gracias, mi amigos.

Thanks for reading #508 of 7777. 

Tuesday, January 31, 2017

#507 Discombobulated...again.

The Torture Chamber

Late post getting out today. Can you tell I'm a bit discombobulated?  Quick update--had the MRI but no results yet.  Stay tune to the drama of Days of Our Lives...

It is getting late on this Monday night as I stare at the computer screen thinking of a profound statement to make...and there is nothing.  Why am I at a loss of words when there is so much yet to say?

Cancer slowly creeps in leaving me totally exhausting or frustrated on a day to day basis. As someone once said, "If it's not one thing, it is another".  And the other is what has thrown me for a loop this time around and has left me wordless.

A brief history because you are probably shaking your heads trying to figure out what the heck the whining is all about.  Last week I received my monthly shots in each bum and one in my arm.  No problem; and as I walked out of the onc office a giddy feeling swept over me for the relatively painless ordeal.

Until..Wham!  The next day arrived with my neck screeching out in pain and a headache that should be X rated for the obscenities spewing from my mouth. Must be a reaction to the prior day's injection fest as I took a few extra pain relievers and slowly went about my day thinking that tomorrow has to be better--with the sun coming out, etc, etc, etc. A big negative on that score.  Right now it is pain 10, me--in fetal position-- 0.  For six days it has not let up and the mega pain relievers aren't making a dent in the torture chamber I'm locked in with the key thrown across the floor.

After a number of calls to various docs, I am scheduled for an MRI or better known as the tomb of terror.  Nervous? Apprehensive?  Scared shitless?  Oh yeah to all of the above.  And nothing to say except, "let's get 'er done".

Ahhh! The life of a metster.  Ups and downs and ins and outs but we keep plugging along hoping the next day will be a bit brighter, a bit easier, and less of a pain in the neck than last week.

I will not apologize for this whining blog--my good buddy, Bob, tells me it is completely unnecessary  for ever saying sorry about this mess--but will continue to shake the bushes for some more of your cold hard cash that may give me a few more years on this planet or at least something that will eliminate the side effects of these wonder drugs.  Please go to UW Carbone Cancer Center and donate.  It will brighten my day.

Thanks for reading #507 of 7777.


Monday, January 23, 2017

#506 GPS--Where In The World Am I?



Physical activity has always been a big part of my life and now with cancer cells taking residence in my bones, my body has been compromised and not able to handle any prolonged exercise.  To deem it frustrating is putting it mildly.  ^#*$($# is what I say on those days when moving hurts or getting out of bed is a struggle.

What happens when your identity--an active maniac--has been stripped, shredded and spit out as undoable?  I loved pushing myself to the limit and getting that "high" from the exertion.  There is nothing like sporting a sweaty body, bursting lungs and then collapsing from exhaustion after a hard workout.  Presently, even a minor exertion is completely out of the picture as I struggle to hike a mere few miles without repercussions the next day.

But then something happens and I rethink my limitations.  What began as an easy five mile hike turned into an adventurous nine miler as we tried to find the elusive car in a mountainous desert area.  Every trail looked the same, no one was around to help us out so it was planting one foot ahead of the other as we tried to climb our way out of this maze.  Was I concerned about my old cancer-filled body not making the journey and crumbling in a heap to be food for the desert rats?  Perhaps a moment or two made me cringe with moderate terror, but on the whole, the camaraderie of the group sharing hilarious stories motivated us all and eventually the lost car was within hiking range.  I, for one, was ready to get down on my knees and kiss the blessed mode of transportation but didn't want to look too much like a drama queen.  I pictured the headlines to read something about a terminally ill woman dragging her friends on a death march.

While I was hiking I thought of the similarities of hiking and cancer.  Day to day it is one step forward, a couple steps back. When my blood work is in the pits and my treatment is temporarily suspended until the white blood count behaves itself, I must be reminded to keep on going. The oncologist knows what he's doing and, as frightening as it seems, he tells me the cancer isn't raging through my body with the stoppage of medication.  We will get to the goal of finding the right combination, however, are not there yet.  For a metster, it is a scary time.

I must take a deep breath, and even though cancer--the ripper of dreams and who I am--tends to be my primary focus, I must remember those days when a nine mile hike unfolds in front of me and I conquer it.  Reconfigure and redo with new hobbies to be discovered is now my mantra while others are laid to rest.  It is not what I wanted but it's what has been handed to me.  Frustrating? Yes, but not life stopping so will continue onward with a half smile/ half grimace on my face.  Let the good times roll when they can.

As always, go to UW Carbone Cancer Center and donate so I may hike many more hikes but will promise to have a compass in my back pocket.

Thanks for reading # 506 of 7777.