Saturday, January 5, 2019

#555 An Anniversary of Sorts


My BHE keeps me sane.

                            "Life is what happens to you while you are busy making other plans."
                                                                      John Lennon

January 6th, 2012 (seven years if you do the math) I received the call that upended our world and spun us out of control. As with any traumatic event this one is so solidly embedded in my mind that it seems like it was only yesterday.  On the other hand, seven years is a long time to remember what life was like before that phone call. When the crying and disbelief subsided I thought how was I going to wrap my head around this, would I recover, and what about the lasting side effects?  I needed a plan because prior to hearing those dreadful words my biggest fear turning sixty were the wrinkles creeping around my eyes. Little did I realize what was in store for me on that cold January day.

After that fateful call I started the intense cancer regimen with surgery to remove the tumor, followed by energy sucking chemotherapy—and then to finish me off—six weeks of radiation blasts.  Finally I thought, after nine discombobulated months, life could return to normal and cancer would soon be a distant nightmare. 

Ha!  Normal and a distant nightmare? Dream on.  Plans do not always unfold as we would hope or envision them to do. If you've followed this blog you know recurrence with a terminal metastatic breast cancer diagnosis occurred a mere twenty months after the last radiation visit and now seven years into living with breast cancer I will share the lessons I have learned.

The physical part of ingesting strong anti cancer drugs and hormone treatments to control the estrogen is wearing and quite telling.  I would like to say I have aged gracefully but know I was shoved into this weathered appearance at a higher rate of speed than your average sixty-plus year old woman.  Okay, my hair has thinned and those wrinkles I was so worried about are tenfold but I am alive and still kicking thus should I really be complaining? Vanity has no purpose in this unchartered life.  Get over it I keep reminding myself.  Lesson one.

As much as I try to put a smiling face on to the world, some days the mental part can be the most difficult and turning up the corners of my mouth seems too much of an effort.  I struggle with the thought of my own mortality.  Yes, I could be hit by a bus tomorrow or, like my friend Heather often would lament, be eaten by a bear; but in reality, cancer has put a big bullseye smack on my life expectancy and it can be daunting to face that day after day.  Again, I follow the sage advice from Heather— every day matters—even the crappy ones.  Lesson two.

Some people in my situation see this whole experience as a gift--more empathy, more awareness to their surroundings, more appreciation for life, etc. etc. etc.  Bunk to that, I say.  This is not a gift.  I've learned things about myself and others I may have never known but to say it is a gift is like saying having one leg amputated would save me a ton of money when buying a pair of shoes.  No thank you. Lesson three.

But the gift that keeps giving are the supportive family and friends who have my back every single time.  One phone call needing assistance and they swarm in like an army of bees ready to do whatever is needed.  They are the living and breathing 911's of my life now.  Seriously, one phone call and they come running to help sans the lights flashing or sirens but with the same intensity of professional EMT’s. Humbled—lesson four.

Not really a lesson but one of my biggest verbal pet peeves—saying this is my “cancer journey".  I have journeyed to exotic places around the world and have a hell of a better time than this.  Skip that moniker and let's call it what it is...

       A really really &*%^#$ (fill in with your best swear word) disease.

Cells mutate, go rogue and become vile while taking up residence in places that should be left to their healthy comrades. Most of the time it is a random act attacking women and men who have been careful about their diets and included exercise as a regular life style. Or sometimes not.  What I have learned in these seven years with this giant load on my back is there is no rhyme or reason who will get that devastating phone call or the call to celebrate good news. Lesson five.

So I continue living day by day, learning as I go along and adjusting to this way of life that gives me a perspective a tad different from those of you with healthy cells.  Seven years since THAT phone call. As I reflect on this anniversary of sorts I intend to discover even more life lessons as well as hanging around for at least the equivalent of seven more dog years (remember 7x7 the formula for dogs).  

With this bit of knowledge bestowed upon you from one who sometimes thinks she knows the secret of living, please consider a donation to give those of us with MBC more anniversaries to celebrate.  Go to our One Woman Many Lakes MBC fund at UW Carbone Cancer Center--the More For Stage IV .  Thank you.

Thanks for reading #555 of 7777.

Saturday, November 17, 2018

#554 My Holiday Wish

Thanksgiving is fast approaching so will share my Holiday wish letter to our past supporters.
Happy Turkey Day to all!

Thanks for reading #554 of 7777.

Thursday, November 1, 2018

#553 November and Still Here!

A couple of metsters and our support team!
November 1st already.  Looking back, I've taken quite a break from my goal of writing every day to stretching it to once a week, then to a month...and now will it be once a quarter?  Life gets busy -- writing was shuffled to the back of burner but now I am back!

The onslaught of pinktober is officially over and I've been following the discussions on social media. There's hate, there's love and then there is indifference.  Let me address the indifference.

First of all, raise your hand if you have never met anyone with some type of cancer.

Next, raise your hand if you have a relative or friend or neighbor with this disease.

Now, raise your hand if you, indeed, have this beast living inside of you.

Maybe the small number of hands in the air of not knowing anyone lets you feel indifference to this disease because, hallelujah, it hasn't directly affected you.   Unfortunately, and I don't want to scare the crap out of you, the chances are good someone you know will be hit with the cancer bomb in your lifetime. Or maybe indifference isn't the right word and it might be because you simply don't know how to help (the Pollyanna in me wants to believe you care that we are dying and truly do want to help).

Your lucky day because I will make sure you are educated on this disease and then encourage you to share your newfound knowledge with your friends.

 Since cancer can affect almost any area on our bodies, I won't overwhelm you with all the known cancer facts but will narrow it down to what I know (and hate) best--metastatic breast cancer.

Here are the top ten facts according to our brochure we put together this past year (I told you I was busy!)

1.  Metastatic breast cancer is breast cancer that has spread beyond the breast to other organs in the body (most often the bones, lungs, liver or brain).
2. No one dies from cancer in the breast.  Deaths are due to metastasis to other parts of the body.
3.  There is no cure
4.  20-30% of people initially diagnosed with early stage disease will develop metastatic breast cancer.
5.  Three years is the average survival after an MBC diagnosis.
6.  Metastatic breast cancer can occur 5, 10 or many years after a person's diagnosis.
7. Less than 10% of all breast cancer research dollars goes towards Stage IV
8.  An estimated 150,000-250,000 Americans are living with metastatic breast cancer
9. Approximately 40,450 women and men in the US died in 2016 from MBC.
10. 100% of your donations to the The More For Stage IV fund at the UW Carbone Cancer Center (click on it) will directly benefit metastatic breast cancer research.

Now there are 10 powerful facts to share in November after the pink dust has fallen away and as the new month unfolds, we are again pushed aside, ignored or completely forgotten until next year. Guess what? My voice is louder than ever and will make sure you know we are still here and always need your support.

Last request, please go vote for the democrat running in your district!  Our lives depend on making sure our preexisting conditions are covered with reasonable health care benefits and they are the ones who will protect us.

Thanks for reading #553 of 7777.







Tuesday, September 18, 2018

#552 Attention Caregivers

Kayaking while I swim.  He never stops giving!


A guest blog from Rob (BHE-best husband ever):

People are very kind and often ask me how I’m doing. I often use the words that we walk a tightrope of hope versus reality. Or, as the canoe picture shows, some days the water is calm while others it is a category 5 storm. Let me share this article that expresses many of my sentiments and thoughts.


Rob

Thanks for reading #552 of 7777.

Thursday, August 2, 2018

#551 To Build or Not To Build--That Was the Question.


Drinking coffee on his new porch...thanks to his wife.
With a terminal disease lingering on my horizon and my number may be up before I am ready, it may seem projects around the house, purchasing expensive items or even buying green bananas would give me pause to reconsider...is it worth the investment?

Guess what?  That's not me anymore. I do not intend to live with dark persisting thoughts of EVERYTHING being my last hurrah and if making home improvements is in the cards, I am on board ready to redo the entire house if needed.  A few years ago we remodeled the kitchen and I questioned if it would be worth it due to my possible limited time to enjoy it.  Rob was hesitant at first, not because of my health, but because he is, well, Rob.  Those who know him well understand perfectly what that means. We forged ahead and of course love the finished product and kick ourselves for waiting so long.  So my next project to attack with the viciousness of a wild boar, (more details to follow of the scope of my ferocity) was a screened-in porch I have been longing for since we moved into this house.

 For thirteen long years I have politely mentioned (okay, downright nagged) my Best Husband Ever about adding a porch off the kitchen.  We had the perfect situation with minimal effort to put this blasted addition up without causing any damage to the environment, our health, the universe...etc. etc. etc. (you get the idea and can you sense my frustration?).  Rob, not quite the BHE at this point, decided thirteen years ago to dig in his heels and refused to budge about any discussion on adding this much needed attachment which, by the way, would greatly increase not only the value of our home but our quality of life since eating on the deck has proven disastrous due to the humongous influx of mosquitoes in our area. Okay, I digress, but again, can you sense my exasperation?  Usually he is on board with most of my homeowner improvement ideas but this issue for some reason was nonbudgeable (not a word but it fits) in his mind.

Finally, a brilliant contractor, (can't thank Chad enough)  showed him a plan that would work for our house without "putting our kitchen in complete darkness" (one of his fears of a porch) and wouldn't cost us an arm and a leg. Voila!  A mere month later with minimum disturbance to our daily lives we are now proud owners of a screened-in porch and guess what?  HE LOVES IT!  Every single day he sits drinking his morning coffee professing his love for this space and every single day I get to say lovingly back to him, "I know, dear,  I told you so." As we bask, mosquito free, on our newly built area I get to smile smugly when he tells me over and over how right I was...again.


Stay tuned for replacement of the downstairs carpet...

Thanks for reading #551 of 7777.




Friday, June 15, 2018

#550 Rob's 65th Birthday Wish

Cheers to the BHE! (Best Husband Ever)


June 19, 2014.  A bone scan.  On his birthday.  He insisted on accompanying me when I reassured him it was probably a running injury. "Lighten up," I said.  "Let's get this thing done and then go out and celebrate your big day."

As I entered the scanning arena, the young tech greeted me enthusiastically and gushed about my "adorable" shoes as I laid down on the extremely comfortable (sarcasm inserted here ) gurney.  It was a jovial group preparing me for the scan which led me to feeling more at ease about the outcome.  Moments later, after the procedure began, the mood in the room shifted and I craned my neck to see the pictures on the screen.  Needless to say, the red dots showing up on my hip and a few other areas made me reconsider my running injury prognosis--this can't be a good sign.

When the previous bubbly tech reappeared with a sad sack look on her face, I immediately sensed a hovering doom settle into the room. She quietly escorted me to the X-ray area without a word spoken between us.  At the time I clearly remember thinking, "Please, no bad news on his birthday."

Of course we didn't have any answers until the following day but the evening prior to THE phone call that would alter everything, Rob's sixty-first birthday, was a somber celebration.  At the time we had no clue what a metastatic diagnosis would mean only that it was not the news we had anticipated and thought life as we knew it would now be forever changed.

And changed it has become. As of this upcoming June 19th, I will have outlived the three year median life expectancy for anyone diagnosed with metastatic breast cancer.  I have gone through four radiation treatments, switched drugs twice and will be beginning my third line of treatment (on his birthday...again) which also means I have had progression twice and, a silly complaint, but have lost a good portion of my hair.  The positive side to all of this is being overwhelmed again and again by the support and kindness of family, friends and strangers.

But one thing has been constant and that is this incredible loving man by my side every step of the way.  He refuses to accept a grim diagnosis and has taken on this monster called cancer with a vengeance that would rattle even the most skilled opponent.  If you know Rob, you know his tenacious spirit and unwillingness to take no for an answer.  Our fundraising has exceeded both of our expectations (well, mine. He sees it as a challenge to find more).  And he pushes on to where we are going next, how we raise more money for our researchers and educating all those who are uninformed.  His networking skills are his strength and as a result have inspired others to give, donate, offer, pledge, bestow, etc. etc. etc. to our More For Stage IV fund.

 A side story about his tenacity.  He has become a top notch amateur researcher and well known in the medical circles, ie. my oncology department, as Dr. Google or Mr. I'll ask questions until there are no more to answer.  For the past two years he has attended the world's largest breast conference in San Antonio--he schmoozes with the researchers, takes notes and then returns to relentlessly pester my oncologist about any latest treatments that might work for me.  Dr. A. is always patient and understanding of his nonstop onslaught of questions and never once has he rolled his eyes.  Mine, on the other hand, are often rolling around my head.

My last oncology visit was sans Rob as it was a teaching session about my new treatment so no need for him to be there.  I was met with the usual hellos from everyone followed by the question, "Where's Rob?"  From the nurses to the receptionists, he is adored and admired for his unbelievable gift of caring and cancer knowledge.  According to them he is close to a walking metastatic encyclopedia if there ever was one and it makes me feel proud that others see him as I do--a stand-up kind of man who will do anything to keep his wife around a while longer.

Lucky me to have him by my side as we navigate through the scariest time in our lives.  When we said our vows forty years ago never in a million years would I think this one would be of such importance--"In sickness and in health".  Yep, he has been there for both--even on his birthday.

To wish Rob a very happy birthday, please consider a donation to UW Carbone Cancer Center. Trust me, he would honestly say it would be the best gift--ever.

Thanks for reading # 550 of 7777.


Sunday, May 13, 2018

#549 Mad As Hell



Alive and still kicking, thank you very much.




Outrage, infuriate, enrage, incense, anger, scandalize, offend, affront, shock, horrify

You pick the verb that would best portray what cancer patients (and anyone with a moral compass) would feel after hearing a statement from the White House--"He's going to die anyway"--and use it to confront the ignorance, apathy, indifference, lack of concern, etc. etc. etc. surrounding a terminal disease.  These words were spewed from a staff member of the President of the United States towards John McCain, a decorated war veteran, a respected member of Congress, and someone living with a terminal disease.  And no apology was given, no reprimand from the higher ups.  Nada.  This is what it means when we marginalize terminal cancer patients--the gig is up, let's not waste another dime on you poor bastards.

Excuse me for being so blunt but where the hell is the_______(see any of the above highlighted words)?  Those of us with a terminal disease must face living or dying every single day and, believe me, it does not sit well when someone so publicly dismisses us with the declaration--you are dying anyway--which has the ominous tone of: Let's stop the feeding, the care, the research because it won't make a damn bit of difference. Seriously? Is this the philosophy from Washington--where decisions are made about our health with regards to where funds go for lifesaving research?

Show me America still has a moral compass by clicking here to make a donation (100% goes to research) to the UW Carbone Cancer Center .  We are worthy and NOT DEAD YET.

Thanks for reading #549 of 7777.