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


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  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.
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?

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.
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.


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.