#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.