#543 Top Ten Reasons

My #1 reason to keep on keeping on

Tis the season upon us to get our rear in gear for the big year end tax write off.  If you have plans to donate some of your hard-earned cash and want to make sure it goes to a good and worthwhile cause, may I suggest you peruse my ten best reasons where it should be given?

Top Ten Reasons to Give

10. The UW Carbone Cancer Center UW Carbone Cancer Center is one of the leading breast cancer centers in the country.

9.  Drs. O'Regan, Wisinski, Burkard (all are from UW) are three of the brightest and the best researchers around and dedicated to their profession.

8.  Metastatic breast cancer receives less than 7% of all research money except in the More for Stage    IV fund at UW where 100% is given directly to the researchers.

7.  113 will die today because a cure has not been found.

6.  It takes money to keep talented researchers in the field.

5.  Not one more person should have to hear the words, "You have a terminal disease."

4.  Research is our best hope.

3.  Our mothers, daughters, aunts, nieces, men in our lives and friends deserve better.

2.  Maggie, Heather, Mindi, Shannon, Beth... and the rest of the 120,000 who have died since my diagnosis must be remembered as we work towards a future for those of us still living.

And the number one reason why we (Rob and I) are constantly working on raising funds for the UW Carbone Cancer Center:

1.  More time with my precious and beautiful daughter and granddaughter and making sure their future is bright and cancer free.

Thank you for your donation to this worthwhile organization UW Carbone Cancer Center .  Because cancer does not discriminate in race, religion, gender or social status; the life you save may someday be your own or a loved one.

Thanks for reading # 543 of 7777.

#542 Texas, Tummy and Stars--What???

No, I have not taken a brief vacation to some exotic place, however, it does sound tempting right now. Alas, my absence has been due to a gurgling stomach(actually much more graphic than that but I will spare you the details) and a love/hate relationship with the bathroom's white porcelain buddha  during the wee hours of the morning before we were to leave for Texas.  At one point I came to the realization that I would not be on the flight that day to the San Antonio Breast Symposium--largest in the world--no matter how much I was wishing away my rocking and rolling gut.

 This is the second year I've had to abort the mission of going and, to say I was miffed, mad, pissed, furious, incensed, etc. etc. etc. (you get the idea), is an understatement.  My plan was to meet many of the metsters attending to form an alliance when approaching the researchers so they would understand our needs and requests to put us as a priority on research.  I also wanted to learn about the types of treatments on the horizon that may potentially save our lives.

While in a foggy stupor, due to the horrible early morning stages of movement...(TMI), I encouraged Rob to go without me--I would be fine.  I will admit I wasn't fine for a few days but with a little help from my friends I slowly recovered from this nasty stomach virus. While Rob was at the convention, he soaked up all he could to share with me even though his tummy was in a bit of a twist as well.

With plenty of time on my hands I was able to view the video from the pharmaceutical company, Novartis, who had filmed us in our home last spring.  We are our own worst critics so I cringed at my part but the dog and cat come across as shining stars.  Go to Afinitor Stories if you care to see both hubs and me in action...along with the dog and cat.

This is also the time of the year to get your tax deductions so go to UW Carbone Cancer Center and donate this month.  All donations go directly to research so your money will make a difference of making MBC a priority.  Thank you from the bottom of my heart (and gurgling tummy).

Thanks for reading #542 of 7777.

#541 Turkey and The Best of the Trimmings

Thanksgiving 2017 is in the official books as one of the best!  All three of our offspring plus our favorite daughter-in-law and son-in-law and son's girlfriend arrived safely throughout the week with constant celebrations as they slowly appeared at the door .  The much anticipated and beloved granddaughter also made her entrance with her mama and daddy and, if you are a grandparent, you have experienced the feeling of a "grandparent love fest".   Thank goodness my children know they have also been well loved so they didn't feel slighted or ignored--too much-- as I oohed and ahhed over this beautiful little girl.

These memories of bowling, hiking, running the Berbee Derby on turkey day, animal watching at the zoo and just hanging out will be cherished for the year but, alas, a few questions frequently pop up if you are living with cancer.  Will I be here next year?  If I am here will I be able to do the things we did or will I be bed ridden?  What if?  How will?  When????

Fortunately life right now is pretty darn rosy and the continuous upward bound roller coaster ride is one I am fully embracing.  To ponder those pesky questions of what may happen is not productive so a mental adjustment is often required to get back on track of "living in the moment" and basking in my stable state. Besides, the most adorable grandchild...ever...needs her grandma around to watch her grow into those big shoes so the "don't worry, be happy, " mantra has been resurrected.

At our last cancer support group at temple our rabbi read an article titled, 9 Thanksgiving Lessons I Learned From Cancer by Mache Seibel, MD.  I highly recommend taking a few moments today and read--in his words--"some things that aren't taught well in medical books".
9 Thanksgiving Lessons I Learned From Cancer .  If you have a loved one with cancer this may give some insight explaining our actions.

The week after Thanksgiving I still treasure the memories and how thankful I am for family and friends.  You also can delight in this wonderful state of thankfulness by supporting me and my 155,000 friends living with MBC with a donation to UW Carbone Cancer Center (More For Stage IV).  We will continually thank you as if our life depended on it... and guess what?  It does.

Thanks for reading #541 of 7777.

#540 Rob Gooze Is Da Man!

Here's to my rock star of a husband!

Since it is Thanksgiving week it seems entirely appropriate to declare my immense gratitude to my  husband who will be receiving the Husband of the Year award in our house.  Warning--it is a bit of a sappy blog but acknowledgement is due to the brilliant go getter and supporter that he is.

Of course he will be embarrassed by this post but I don't care because when it comes to picking a husband, I won the lottery a gazillion times over.  He has shown time after time how you continue to love a person despite obstacles that no one sees when they start out on this adventure of life and marriage.

  After my first diagnosis, instead of panicking and running to the hills,  I saw my beloved husband step up and figure out how we were going to get through a difficult year of chemotherapy, surgeries and radiation.  He insisted on going to every treatment, asking questions and making sure I had everything I needed when I would come home exhausted from the ordeal of the day.  Completing that hell of a year strengthened an already solid relationship and made us appreciate each other and every day more than ever.

One of the many talents of Rob Gooze

That was almost six years ago and now this... this hellish ride of a terminal diagnosis that, when given the news, sent us into each other's arms with fear searing through our bodies. Instead of backing out of our partnership and deciding this was not what he signed up for thirty-nine years ago, this incredible man has dug in for the long haul and has been standing beside me with his fists up taking on cancer as if his life also depended on it... and maybe it does.  He wants me hanging around for a long long time and he proves it with his ferocious tenacity of demanding answers and getting money into the hands of the researchers who can save my life.

By using his skills as a negotiator, logistics guru, schmoozer and all around "get things done" kind of guy, he has helped raise a ton of money (currently we have raised almost $600,000 in three years) and awareness for MBC.  Want a meeting with Paul Ryan?  Check, he arranged it.  Need interviews on television stations to spread the word?  Check, he did it.  Newspapers, magazine articles, you name it broadcasting the word about this disease-- he managed to make it happen. Design a webpage when it is not his expertise--no problem, got it done--www.onewomanmanylakes.org. One day he decided a brochure should be available to others so he convinced some marketing experts to advise him on how to do it and... Voila!  it resulted in a creative and impressive handout to get people involved.

Right now he thinks he is doing this for me--to keep me from succumbing to this wretched disease-- but I look at the bigger picture and see he is making a difference so not one more person has to hear those life changing words of, "You have a terminal disease".  That's the kind of guy he is and that's why I love him more each day and am so thankful we are riding in the same buggy together. As we approach the holiday of giving thanks I publicly and loudly send my gratitude to this super hero of mine for not only standing by his woman but whipping up the best omelets...EVER.    Love, love, love this man of mine.

To continue this love fest, please consider a donation to UW Carbone Cancer Center, and we can all be grateful for a Happy Thanksgiving.

Thanks for reading #520 of 7777.

#539 Wheee! It's a Ride

Even on cloudy days, look for the rainbow

Life is full of struggles from health issues to financial woes to something as simple as a dog depositing his...you know what on the freshly cleaned carpet downstairs. Sometimes I find myself totally undone by the simplest action from the dog yet find strength to carry on when life becomes more complicated. Often times, though, a mysterious twitch in my body can signal a full blown catastrophic meltdown. 

Case in point: My every day health can be like a ride on the scariest roller coaster ever built.  When I am flying upwards and feeling good, everything around me is grand--I swim farther, play harder, even cook dinner if Rob lets me in the kitchen.  However, that downward plunge is fast and furious when  an aching hip or back pain raises concern and my panic button goes into full alert.  Cancer does that--it can make a mountain out of a molehill.  

This past fall I had an aching back that wouldn't go away and each step I took I was sure it was the cancer cells growing by leaps and bounds. Thoughts crept into my brain of what's next on this bumpy road I'm traveling. I've passed the three year mark of median survival rates so... is this it--I've exceeded my limit?  These thoughts combined with the death of a well known advocate who seemed to tackle every obstacle with such gusto and determination left me completely unhinged. 

Fortunately for me the news is good.  After the medical scans were completed, it appears my ugly cancer cells are in retreat--not gone and forgotten-- but certainly not expanding into some type of army of doom. I can now BREATHE a sigh of relief and get back into the roller coaster for the next hair raising ride.  With cancer it's a never ending jaunt. 

So what to do with splendid news.  Travel to the Bahamas and grab onto this feeling and hope it lasts a tad longer.  The trip reinforced the phrase, Make Every Day Matter, and we certainly relished that motto by finding a pristine place called Cat Island (No abundance of cats.  Supposedly it was named after a Captain Catt).  

Swimming was magnificent in the bluest waters I’ve ever seen and the sandy beach stretched for a mile in front of our cottage. I seized every opportunity to be floating in that blissful state of suspension. Gliding along with a full view of the ocean floor and not one shark or nibble from a fish the entire time was a mini heaven for me.  Of course an official One Woman Many Lakes swim is now in the record books but it doesn’t describe the splendor of this swim. 

Our fishing adventure was one more of those memorable moments that will be cherished forever.  The three of us--Rob, the guide and I set off on another gorgeous morning to see if we could catch the elusive and speedy bonefish.  After Rob's numerous casting and a no show every time, he decided it was time for me to attempt this challenge of the fish face off.  Two casts later and I hooked the little booger, letting it run for a bit and then Bingo!  got it in the net.  I was thrilled and now poor Rob has to listen to my bragging rights to catching the only fish of the day.  Guess we will have to make a return trip next year so he can redeem his fish throne. 

Thanks for reading #539 of 7777.

#538 Beth Caldwell is a Super Hero

Long Lake--dedicated to Beth Caldwell on August 19

There are no words I can describe on how I am feeling tonight after reading Beth Caldwell's latest blog.  Rob and I met this incredible woman in Seattle after I had been diagnosed with metastatic breast cancer.  Our advocacy work was in its infancy and we were looking for ideas on what to do with our energy to make this disease a priority in the breast cancer community.  We listened and learned.

Beth was fierce, direct and I sat in awe of her knowledge and her passion.  Her "take charge" attitude was evident that day but didn't realize until later of her numerous accomplishments with her civil rights work along with her cancer work.  In our brief meeting I learned how important it is to advocate for myself, question cancer organizations' funding and search for the truth in giving.  She was unstoppable and that is the one lesson I will remember and continue to emulate as long as I am physically able to do so.

Grab the kleenex box and read her latest blog--but don't stop there.  Work backwards through the other entries.  I guarantee you will thank your lucky stars she has been in our corner as a hero to not only the mets community but to anyone else who needed support.  Cult of Perfect Motherhood by Beth Caldwell

Comfort and love across the airwaves to her and her beloved family.  It just isn't fair--GDMFSOBS! (My best combination of swear words I shared with her).

Tomorrow, instead of buying your overpriced latte (or whatever you drink), send a donation in honor of one hell of a woman.  Either donate to UW Carbone Cancer Center , Metavivor or Fred Hutch.

Thanks for reading #538 of 7777.

#537 Facts About MBC

The DC Die in

The entry below is what I have been posting for the past twenty-two days on Facebook. It was my attempt to counter the bombardment of Pinktober as we entered this stressful (for metsters) month.  Read, learn, educate and share.  Speaking to the legislators in Washington DC on October 13th along with others living with this disease, it felt empowering that our voices are beginning to be heard.  I will continue hollering and bellowing on what can be done and what we should be doing so please, join us in roaring.  www.onewomanmanylakes.org

From MBCN

1. What is Metastatic Breast Cancer?  (pronounced as Met-a-STA-tic) MBC also known as Stage IV is cancer that has spread outside of the breast to other organs such as bones, liver, lung or brain. This process is called metastasis. (pronounced as Me-TAS-ta-sis)
2. What happens when breast cancer spreads?
   Breast cancer that spreads to another organ, such as bones, lung, or liver, is still breast cancer and does not become bone cancer or liver cancer or lung cancer.  Under a microscope, the tumor cells will still look and act like breast cancer and will be treated as breast cancer.
3. Who gets metastatic breast cancer?
   
   
   No one brings metastatic disease on themselves. The sad truth is that anyone who has had an earlier stage of breast cancer can experience a metastatic recurrence and some women have metastatic disease on their initial diagnosis of cancer–despite mammograms and early detection!
4. Why does breast cancer metastasize? (pronounced as Me-TAS-ta-size)
   Researchers at this time can’t explain why metastatic disease occurs, but they’re working on finding answers. Early detection is a detection tool, but it does not a cure or prevent an early cancer from coming back in the future as metastatic disease.
5. What are the statistics on incidence of metastatic breast cancer?
   There are estimates that 20-30% of patients with an early stage cancer will have their cancer return as metastatic, even if they were told their early stage cancer had been “cured.” Another 8% of new breast cancer cases are found to be metastatic at their initial diagnosis.
6. What is the main difference between early stage breast cancer and metastatic breast cancer?
   Metastatic Breast Cancer (mbc) is treatable but no longer curable. Treatment is lifelong and focuses on preventing further spread of the disease and managing symptoms. The goal is for patients to live a good quality of life for as long as possible.
7. How is metastatic breast cancer treated?
   Depending primarily on the kind or subtype of mbc, patients may be on either targeted therapies or systemic chemotherapy. Radiation and surgery are also sometimes used.
8. What are the different kinds (subtypes) of metastatic breast cancer?
   Subtypes for early stage and metastatic breast cancer are the same: An estimated 65% of patients have Hormonal (estrogen or progesterone driven), also called ER+/PR+; 20% have Her2+(fueled by a protein identified as Her2 neu) and 15% have Triple Negative Breast Cancer (TNBC- which does not have any of the 3 above known biomarkers: ER. PR or HER2). These numbers are approximate, because some people have more than one subtype ( HER2+ and ER+) or their subtype may change over time.
9. How many women and men die of breast cancer each year?
   Approximately 40,000 die of breast cancer each year—a number that essentially is unchanged over the last 20 years. All deaths from breast cancer are caused by metastatic breast cancer.
10. How many people are living with mbc in the US?
    Although the National Cancer Institute collects statistics of patients who have an initial diagnosis of mbc, the NCI does not count metastatic breast cancer recurrences.  Studies estimate that there are over 155,000 women and men living with metastatic breast cancer in the US–and doing our best to live well!
11. Is metastatic breast cancer a chronic disease?
    Not yet, but that is an important goal. As researchers identify more and better treatments, MBC could become a chronic disease like diabetes or HIV/AIDS, where patients can be stable on medications for 20 or more years.
12. How much is spent on research funding for metastatic breast cancer?
    The Metastatic Breast Cancer Alliance did a study that found that of all research grants, funded by major public and private sources from 2006-2013, only 7% of funds studied metastatic breast cancer, even though metastasis is what causes breast cancer to become a deadly disease.
13. What is National Metastatic Breast Cancer Awareness Day?
    October 13 was sent aside by unanimous House and Senate resolutions in 2009, establishing that one day in October should recognize and bring awareness to metastatic breast cancer. One day is not enough but it’s a start for year round awareness of what mbc is and why it’s important for all of us. History of MBC National Awareness Day >
14. Do men get breast cancer?
    Yes, men do get breast cancer and they are often misdiagnosed initially. They represent about 1% of the new cases of breast cancer and 1% of the deaths from metastatic breast cancer. (410 deaths in 2012)
15. Do young women get metastatic breast cancer?
    YES. For young women under 40: 5% of the new cases of breast cancer and 3% of the deaths. Metastatic breast cancer is the leading cause of cancer deaths in this age group. For young women under 50: 27% of the new cases of breast cancer and 16% of the deaths.
16. How is metastatic breast cancer monitored?
    Usually MBC is monitored by periodic imaging tests (CT, PET or bone scans or MRIs), blood tests measuring tumor markers and assessment of how the patient is feeling.
17. How often are patients living with metastatic breast cancer scanned?
    Usually we are scanned every 3 months; if metastases remain stable or shrink, scans may be done less frequently (eg every 6 months).
18. What is scanxiety?
    Scanxiety refers to patient anxiety over scans and occurs as their scan date approaches. Good test results refer to stable disease (mets are not growing or spreading) or NED (no evidence of disease) on scans.
19. What is NED (no evidence of disease) and how does it differ from being ‘in remission’ or being ‘cancer free’?
    No Evidence of Disease means that the metastases are no longer detectable on an imaging scan. This is great news, but because breast cancer cells are still circulating in the body, treatment continues. ‘In remission’ is an older term and not usually used in metastatic breast cancer. Once you are metastatic, you are never ‘cancer-free,’ but being NED or being stable are still wonderful words to hear from your oncologist.
20. Why does treatment for metastatic disease seem ‘less aggressive’ than treatment for early stage disease? Why does everything feel less urgent, despite a much more serious prognosis?
    Treatment of early stage disease focuses on curing the cancer and therefore is immediate and aggressive. Because there is no cure for mbc at this time, treatment focuses on controlling the disease and permits a more measured, long-term approach to therapy, with hopefully more attention directed to long term quality of life and reducing or preventing adverse side effects of treatments.
21. People often ask ‘Why do you look so good, if you have an incurable cancer?’
    Metastatic breast cancer has its ups and downs. Sometimes, we may be feeling relatively good and are living with stable disease. Other times we may be experiencing a lot of side effects. If hair loss isn’t one of them, people may not notice. Even when the disease is progressing, we may still look ok, up to a certain point.
22. What are clinical trials and are they a ‘last resort’ when all other treatments fail?
    Not at all. Clinical trials are controlled treatment studies on new drugs and are the method used to obtain FDA approval of new treatments. They should be an option considered right from the beginning of treatment for MBC patients, along with standard treatments. A clinical trial may or may not be right for an individual and should be discussed with the oncologist.

Thank you for reading #537 of 7777.

#536 Can You Hear Me Roar Once More?

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

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

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

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

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

Thanks for reading #536 of 7777.

#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.

#534 THANK YOU!

The brave swimmers giving a thumbs up to our supporters.

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

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

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

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

Thanks for reading #534 of 7777.

#533 Unfair Hair and Other Injustices

Everyone likes a cute cat picture!

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

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

https://www.pinterest.com/explore/not-fair-quotes/?lp=true

I have been pondering the whole unfair life phrase recently as there have been changes going on that are out of my control.  How unjust can life be?  Women in their prime dying and leaving young children without their mothers is the first injustice that comes to mind.  We were dealt a rotten set of cards and the simple phrase of life being unfair seems to me a vast understatement.

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

https://www.pinterest.com/pin/267823509066068642/?lp=true

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

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

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

http://quoteaddicts.com/i/48792

Thanks for reading #533 of 7777.

#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.

#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.

#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.

#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.

#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.

#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.

#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.

#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.

#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.