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.