Sunday, May 31, 2015

# 230 David's Wise Words

An entry from my youngest as he ventures off overseas today. Safe travels--and I mean, safe travels the entire year as I worry and fret over his well-being. Again, parenting--the job that never ends. Despite my reservations, I am immensely proud of him and his adventurous spirit even though my gray hairs are sprouting faster than my hair dresser can keep them colored.


Less than a year after returning from Peace Corps Togo, it looks like I will be heading on out again, only this time to Senegal. Many are wondering, and rightfully so, why a man would want to put himself through another year of pooping in a hole, unbearable heat, being the white man (which isn’t always a good thing) and the dreaded stomach problems that are associated with West African living. Which, truth be told, might be one of the least tourist friendly places in the world that isn't a war zone. 

Well, for one, Senegal is much better off than Togo was, which means paved roads, not as smelly holes in the ground, and diarrhea only 3 times a week, and not 5 times. So I’m taking a step up that's for sure.  


Also, my work seems pretty cool, so can not complain about that aspect. I get to live in a city setting, while going out in the bush and working with farmers and setting up trainings to improve their crop yields and food security. Pretty much, I get to hang with poor African farmers, which if you haven't done so yet, you should. 


It involves a lot of joking about the most mundane stuff and random laughing at the white dude who is trying to build a yam mound. I’m a simple dude with simple needs, so getting my hands dirty while working in unbearable heat is a sick fantasy of mine. Or maybe it was the malaria drugs that were causing me to think that. Or perhaps, as I'm sitting in a nice air conditioned room, with running water and solid electricity, while sipping on a nice cold glass of clean water, my mind has forgotten just how crappy it can be over there.  


But oh well, that's life. I figure, why not head on over there, do this work for a year, and then see where the wind takes me. I’m not so much doing it because I feel these farmers need my “help”. And I'm definitely not trying to save all the “poor, suffering” babies in Africa just so I can put a cute pic of me with a black baby on facebook and have everyone comment how amazing I am. 


I’m doing it because I enjoy working and learning from them, and I can relate to them. From my experience in Togo, I learned to go with the flow when working with farmers and I came to realize that most of them were a hell of a lot smarter than I was; the only difference being that they were raised in different circumstances. 


This is not me trying to save the world. This is not me trying to make a difference and “make the world a better place”. I look at it as a simple act of me doing my job which is something that I enjoy. I don’t think of myself as some mighty savior because the world needs bankers, teachers, construction workers, accountants, etc just as much as they need a dude planting trees in Africa. 


Actually, I'm pretty sure the world needs accountants much more than they need a planting dude. And just like an accountant isn't looking at leaving his job anytime soon to head to Senegal, I’m not looking at becoming an accountant mainly because my Jewish genes have failed me in regards to my accounting skills.  


So there you have it, a simple statement of me heading back to good old Africa, to do some random tree plantings, improve the food security over there, learn a new language and have ungodly terrible diarrhea.  Wish me luck.


Thanks for reading # 230 of 7777.

Saturday, May 30, 2015

#229 The Observer

My observations after a brief stay in New York City.

1.  No one walking around the streets wears six inch high heels.
2.  Friendly and helpful cab drivers if you begin the conversation.
3.  Look lost and someone will point you in the right direction.
4.  Everyone who is loud and obnoxious and taking selfies--especially around Times Square-- is probably a tourist.
5.  Beggars are creative--"I won't lie, need money for weed".
6. A minimum of a week to see everything in the Metropolitan Museum of Art.
7.  New Yorkers tend not to acknowledge the existence of the other 49 states let alone the remaining land outside the city borders.
8.   Perfect place for an insomniac--the city never sleeps.
9.  Stay in a classy hotel and you are treated with class.
10.  Pizza on the street--no more needs to be said.

Thanks for reading # 229 of 7777.

Friday, May 29, 2015

#228 I Love New York

Love New York!
Backstage with "Cynthia" from Beautiful-thanks Beth and Gillian for arranging this!

What is it about this city that grabs us every time we visit with promises made to ourselves that we will return every single year--and then never do?  It won't happen again--we will be back.

Three entertaining plays, enormous amounts of food, the humbling 911 museum and the one and only Metropolitan Museum of Art all tackled in three short days. Thrown into the mix was a visit with friends along with jaunts on the subway--always an adventure for us country bumpkins.   Oh! and I can't forget the people watching (including the painted nude women parading around Times Square) and the skyscraper gawking and THE Central Park strolling and on and on and on. 

If you are venturing out to the Big Apple anytime soon I would highly recommend seeing these exceptional Broadway shows.





Thanks for reading # 228 of 7777.








Thursday, May 28, 2015

# 227 For Good

In honor of being in New York and the play, Wicked;  and in gratitude of my supportive family and friends--this is for you.

For Good
by Stephen Schwartz

I've heard it said that people come into our lives for a reason,
Bringing something we must learn.
And we are led to those who help us most to grow
If we let them and we help them in return.
Well, I don't know if I believe that's true
But I know I'm who I am today because I knew you.

Like a comet pulled from orbit as it passes a sun,
Like a stream that meets a boulder halfway through the wood,
Who can say I' e been changed for the better?
But because I knew you, I have been changed for good.

It well may be that we will never meet again in this lifetime,
So let me say before we part:
So much of me is made of what I learned from you
You'll be with me like a hand-print on my heart.
And now whatever way our stories end,
I know you have re-written mine by being my friend.

Like a ship blown from its moorings by a wind off the sea,
Like a seed dropped by a sky-bird in a distant wood.
Who can say if I've been changed for the better?
(I do believe I have been changed for the better.)
But because I knew you--because I knew you--
Because I knew you: I have been changed for good.

Thanks for reading #227 of 7777.

Wednesday, May 27, 2015

# 226 Upcoming Swims

Mark your calendars!

As I have mentioned numerous times (ad nauseum), I am swimming the five Madison lakes in June and below is my schedule if anyone is in the area and wants to watch, kayak/canoe or swim with me.  Several good buddies from the Zone, my neighbor and others are venturing out in the lakes so feel free to don that suit and make a splash for MBC. We can make a difference!

Swims will start at 11:00, weather permitting.
In and out may change depending on winds as to the safest direction to swim

Tuesday June 2
Lake Wingra
Vilas Park beach to Wingra boat dock and back to beach 1.8 miles

Wednesday June 10
Lake Waubesa
Goodland Park to McDaniel Park next to the Green Lantern 2.2 miles

Tuesday June 16
Lake Kegonsa
Stoughton County Club to Lake Kegonsa State Park 2.4 miles

Tuesday June 23
Lake Monona
Olin-Turville Park to Olbrich Beach 3.0 miles

Tuesday June 30
Lake Mendota
Governor Nelson State Park to Memorial Union 4.5 miles

Thanks for reading # 226 of 7777.

Tuesday, May 26, 2015

# 225 A New Website!

My number one husband has been busy learning how and then creating a website for my swims.  He is so proud of his accomplishments that I must share with others.  This has all the information you may want to know or care to know about what we will be doing in June.

In his own words, "It's rough but if anyone out there cares to assist in improving it, let me know."  He's modest.  I think it's perfect.  Well, almost perfect, but since creating websites is not my expertise and I didn't have to do it, it is fine.

Please visit  http://onewomanmanylakes.net to view his masterpiece.

Thanks for reading # 225 of 7777.

Monday, May 25, 2015

# 224 Hindsight

Hindsight is always 20/20 so this is a letter I should have written to myself prior to my second diagnosis.  Was I naive about a recurrence? A big resounding "yes".  Did I have my head in the sand?  I'm not sure but at the end of my treatments it felt good to clap my hands together, raise them in a triumphant cheer and think that I was done with cancer.  Paid my dues now let's get on with living.

This is also a letter to those who have gone through the initial diagnosis and are now cancer free.  We metsters need your support and possibly (spit in the sand and turn around three times remove the curse--you will never need it)  it could help you.

Dear Me,
Your hair has grown back, chemo and radiation are a distant memory but do not, I mean, DO NOT think that you are on Easy Street.  Thirty percent of initial cancer diagnoses metastasizes and you could be one of them--even years later.

Start campaigning now to save your sisters and brothers who will be faced with the next possible challenge of a recurrence.  Yes, you feel good now and want that nightmare of a year to vanish so looking forward is important.  What is truly essential though is to stop and think about what will happen if it does come back.  Are there resources for you to maintain the quality of life you so desperately crave?  Will there be support or will you be alone in a terrifying place that no one seems to know about or unsure how to help.

Join those who face a stage 4 diagnosis.  Do not shy away from them. They need you. They need you to stand up and say, "Enough already!  Where are the funds for the forgotten group who only want to live to see their children grow up or hold their first grandchild or simply enjoy a long life?"

What to do now that I have your attention?  Start with writing to your representative in Congress and demand more funding for MBC or write to the many cancer organizations insisting more dollars go to stage 4.  The inequality is appalling as approximately only two to five percent of all cancer donations goes to metastatic research.

Congratulations on being a "survivor" but please get busy helping those who drew the short straw on cancer.

Love,
Me

Thanks for reading #224 of 7777.


Sunday, May 24, 2015

#223 Africa, Here He Comes

Love his selfie

The baby of the family is home for another week before he heads off on his next adventure in Senegal, West Africa (I am proud of him---really I am).  While on his brief visit here, he is committed to learning the Wolof language and has me as his language coach or more accurately, a listener, while he attempts to tackle this difficult task.  I am quite impressed how quickly he is mastering this dialect especially since it is an unusual one that is generally not heard on the streets of Wisconsin or anywhere else in the US.

Flashcards have been flying around the house and videos are watched as he corralled me into coaching him on his accuracy.  Since Wolof is not my second language, I have no idea if what he is saying is correct or mumble jumble.  I have decided that my actual job is to be the "encourager" and I repeat the phrase, "You are brilliant!" every time we have our flashcard moments. Does it help?  Not sure but it makes him smile and roll his eyes. Definitely worth the mom privileges of either bugging him or reminding him of his number one supporter. My hope is when he is there he can successfully communicate the following phrases and anything else will be icing on the cake.

Very Important Phrases for David's Survival in Senegal according to Mama Gooze:

1.  Where is the bathroom?
2. I am hungry.
3.  I need a doctor.
4.  Take me to my home.
5. Is this water clean?
6.  Where is the American Embassy?
7.  Leave me alone-- my mother will kill you if you hurt me.
8.  How much is it?
9. No, I don't need a wife.
10.  I want to go back to America to see my mother.

Thanks for reading # 223 of 7777.

Saturday, May 23, 2015

#222 A Million Dollar Massage

Massage for Women, LLC 
Lisa Steil - LMT, NCBTMB 
WI#3013-146
Located within Pivotal Point Acupuncture, call her directly at 608-358-6147.    Hours are by appointment only.
Lisa creates a safe and peaceful place for women to relax and enjoy massage. 


Go directly to Massage for Woman if you need that extra touch of human kindness.  Do not pass go or tarry along the way.  This woman has the hands of a saint (not that I've necessarily experienced a saint's massage) and you will float away revitalized and feeling like a million bucks.  She is also a philanthropic, compassionate person and would probably give you the shirt off your back if you asked or if she saw you needed it.

Love, love, love her and how she makes me feel every single time.  Lisa, your donation to METAvivor is in the mail and I appreciate every ounce of your goodness.  She is definitely clone worthy.

Thanks for reading #222 of 7777.

Friday, May 22, 2015

#221 Telling My Story

A random act of generosity--this warms my heart every time I think about it.  I recently was doing my  ongoing laps at the pool when a woman in the next lane--I'm only on first name basis with her--started a conversation  (not while we were swimming---obviously) that led to revealing my cancer diagnosis.  She had numerous questions and I was happy to give my pitch about my upcoming swims, awareness to MBC and fund raising--I tried not to rant too long as I am keenly aware of the glassy eyed look that sometimes creeps in when I begin my one sided tirades.  Afterwards in the locker room she approached me with check book in hand and a generous donation to Metavivor--no questions asked--just wanted to help.

Now when I get into the countless lakes this summer and wonder if anyone is paying attention, I'll think about my pool buddy and her kindness.  What surprised me most about her response is I didn't even have to ask--I just told my story.

Thanks to her and all of you who are listening.

Thanks for reading # 221 of 7777.




Thursday, May 21, 2015

#220 Top Ten

Those who have been diagnosed with cancer are aware of the "cancer card" we all carry.  It is our only consolation in living with this disease.  So in honor of David Letterman's retirement last night I present you with:


Top Ten Reasons for Using the Cancer Card

10. Messy house (Yep, no cleaning today, I have cancer)
9.  Boring party escape (Yawn! Time for me to leave because...I.H.C.)
8.  Weight gain? (No I will not put down this ice cream cone...I.H.C.)
7.  Discounts, free stuff, free trips (Sure I could use a new car...I.H.C.)
6.  Upgrades to first class ( I need to be comfortable on this long flight...I.H.C.)
5.  Temporary forgetfulness (Did I say that already? Cancer talking)
4.  Oops, a fender bender (But officer, it wasn't my fault cause I.H.C.)
3.  8:00 bedtime (I.H.C.)
2.  Kids, please call me ( Or I will embarrass you in my blog because I.H.C.)

and the number one reason for using the cancer card...

1.  Headache tonight,  sorry honey (I.H.C)

Thanks for reading # 220 of 7777.








Wednesday, May 20, 2015

# 219 The Big One That Got Away


“A hug makes you feel good all day.” 




Okay, Rob left yesterday morning to go on his beloved fishing trip with our financial advisor--of all people.  Make no mistake about it, I love this guy... until it comes to the "f" word.  Talk about kids in a candy store with an extra nickel to spend.  At the crack of dawn they were making their last preparations to hit the road and find those slippery "cold blooded vertebrae" that were just waiting to be caught... and released.  Side note--I don't get it.  That's all I have to say about that subject.  



Anyway, I stumbled into the kitchen with sleep still wrapping its arms around me when I greeted them as they scurried around grabbing coffee, treats for the road and whatever else appealed to these fish warriors.  Since my eyes were barely open it took me a minute to realize the quiet that had descended on the kitchen.  Poof!  Out the door and racing down the road without even a wave of the hand let alone the usual morning hug from my husband; and they were gone.  

I didn't care about a hug from the financial advisor --in my jammies, it didn't seem quite appropriate--but Rob?  What the heck?  We never begin our day without one of those good old bear hugs that envelopes your body and "makes you feel good all day" .  Or not saying good bye?  Was I in the midst of teenage boys with a one track mind?  Obviously.

I texted him on the road explaining to him in words that aren't for print but the "G" rated version was--YOU LEFT ME WITHOUT EVEN A WAVE GOODBYE LET ALONE A HUG!!!  

A quick phone call followed this exchange as I told him to give his precious fish a hug because obviously they are much more appealing than his previously adoring wife. He had about twelve hours before he returned laden with gifts to make amends.   The kitchen needs a new coat of paint, I could use a trip to Paris and a major shopping spree--the list is endless on how he will NEVER forget that hug again.

I know, I know.  Give the guy a break.  He has to live with me and all the cancer drama so he is allowed a slip every once in a while.  I'll contemplate that thought tonight as he dreams about his caught and released prized fish... or the hug that got away.

Thanks for reading # 219 of 7777.


Tuesday, May 19, 2015

#218 Wheeeee!

A quick Hallelujah post today!  Yesterday I had an MRI because of some issues on my neck and the back of my head and of course, whenever you have issues and a cancer diagnosis, red flags start flying so it was time to check it out.

 My onc doc was smiling as he came into the room to report no evidence of metastasis on the brain.  He's not sure what it is but at least cancer can be eliminated from the pile of maladies that we all tend to suffer as we age.  He'll be diligent about it and will check again in six months.  In the meantime Rob and I have been breathing a huge sigh of relief and can finally get a much needed stress relieved sleep.

The roller coaster of living with cancer can be harrowing as we negotiate through each up and down but; yippee! we are raising our arms in celebration over this hurdle.  Phew! Dodged that bullet for now.

Thanks for reading #218 of 7777.


Monday, May 18, 2015

# 217 METSMONDAY

Yep, it's MetsMonday again so back on my soapbox to rant and shout and scream.  My thoughtful daughter-in-law sent me this piece and correctly assumed it would be good blog material. Don't be deterred by the length, the content is well worth your time.

Living with Stage 4
In a culture focused on survivorship, those with metastatic breast cancer who will be in treatment for the rest of their lives can feel isolated and misunderstood
Oct. 24, 2014

 |  By Diane Mapes / Fred Hutch News Service

Teri Pollastro, a 54-year-old Stage 4 patient from Seattle, said, “People don’t understand the word metastatic to begin with. ... When I’d tell them I was Stage 4, they’d give me pity or stay away or see me a year later and think I was a ghost. They couldn’t believe I was alive."

A no-nonsense Texan of 60 years, Jody Schoger has a very no-nonsense way of educating people about her metastatic breast cancer. “Someone will say, ‘When are you done with treatment?’ and I’ll tell them, ‘When I’m dead,’” said Schoger, a writer and cancer advocate who lives near Houston.  “So many people interpret survivorship as going across the board. That everybody survives cancer now. But everybody does not survive cancer.”

An estimated 155,000-plus women (and men) in the U.S. currently live with “mets,” Stage 4 breast cancer that’s metastasized, or traveled, through the bloodstream to create tumors in the liver, lungs, brain, bones and/or other parts of the body. While treatable, metastatic breast cancer (MBC) is incurable, between 20 and 30 percent of women with early stage breast cancer go on to develop MBC. Median survival is three years; annually, the disease takes 40,000 lives. 

As with primary breast cancer, treatment for mets can often be harsh and unforgiving.  But dealing with an incurable illness and the side effects of its treatment aren’t the only burden MBC patients have to bear. Many also have to educate others about their disease, explaining over and over that no, the scans and blood tests and treatments will never come to end. No, the metastasized breast cancer in their lungs is neither lung cancer nor linked to smoking. No, staying positive and “just fighting hard” isn’t going to beat back their late-stage disease. As one mets patient in this Living Beyond Breast Cancer video put it, “It’s almost like having another job … My wish would be that the larger support circle would just get it more.”

A disease no one ‘gets’
Sadly, people don’t “get” mets. In fact, a recent survey sponsored by Pfizer Oncology shows just how misunderstood it is. Sixty percent of the 2,000 people surveyed knew little to nothing about MBC while 72 percent believed advanced breast cancer was curable as long as it was diagnosed early. Even more disheartening, a full 50 percent thought breast cancer progressed because patients either didn’t take the right treatment or the right preventive measures.

“They’ve built an industry built on four words – early detection equals cure – and that doesn’t even begin to define breast cancer,” said Schoger, who helped found Breast Cancer Social Media, a virtual community for breast cancer survivors, surgeons, oncologists and others. “Women are blamed for the fate of bad biology.”

The MBC Alliance, a consortium of 29 cancer organizations including the biggest names in breast cancer (think Avon, Komen, Susan Love), addressed this lack of understanding and support as well as what many patient advocates term the underfunding of MBC research in a recently published landmark report.  “The dominance of the ‘breast cancer survivor’ identity masks the reality that patients treated for early stage breast cancer can experience metastatic recurrence … [anywhere from] a few months [to] 20 years or more after initial diagnosis,” the report states. “Public messaging about the ‘cure’ and survivorship is so pervasive that people diagnosed at Stage 4 with MBC can be stigmatized by the perception that they’ve failed to take care of themselves or undergo annual screening.”

‘You end up on Mars’
Schoger’s breast cancer -- called invasive lobular carcinoma or ILC -- came back 15 years after her original diagnosis and treatment. “You think you’re going to be flying to Chicago and land at O’Hare and you end up on Mars,” she said of her April 2013 mets diagnosis.  “It’s not well known that you can have late recurrence. I even had an oncology nurse tell me ‘Oh, you’re cured’ at eight years.”

Schoger’s doctors threw everything at her cancer after her initial diagnosis: mastectomy, chemotherapy, radiation and the daily medication tamoxifen, a form of hormone (or endocrine) therapy designed to cut off the food supply of her estrogen-receptor-positive (ER+) breast cancer.

But with MBC, the treatment philosophy is different. “With primary cancer, they say, ‘We’re going to pull out all the big guns. We’re going to put it in permanent remission,’” she said. “With MBC, you use as little as possible to get the biggest effect. You attempt to stabilize the disease.”

For Schoger, that means a daily aromatase inhibitor (AI), which shuts down estrogen production even further to starve  her cancer, along with a monthly infusion of Xgeva, a bone strengthening agent designed to combat the bone-zapping side effects of her AI treatment. Schoger said she will remain on this therapy until it stops working. Then, like most patients with MBC, she’ll move on to something else. “With metastasis, you’ll have times where you’re responding well and your disease is stable,” she said. “And then there will be a scary time of progression. Then there will be a new treatment, a time of stability again, then – boom – progression. And it’s all sort of going down each time that happens.

“None of us knows which way our disease is going to go,” said Schoger, who has lost many friends to MBC. “Everybody hopes for the longest possible time for the first therapy you’re given. But some women have aggressive disease and just blow through their therapies.”

From ‘cured’ to Stage 4
Others, like Teri Pollastro, a 54-year-old Stage 4 patient from Seattle, respond surprisingly well. Diagnosed with early stage ductal carcinoma in situ (DCIS) in 1999, Pollastro underwent a mastectomy but did not receive chemotherapy, radiation or tamoxifen, since her cancer was ER negative. “They used the C-word with me, they told me I was cured,” she said. “Every time I went back to my oncologist, he would roll his eyes at me when I had questions.” In 2003, Pollastro switched to Seattle Cancer Care Alliance where she saw Dr. Julie Gralow, a breast cancer oncologist and clinical researcher at Fred Hutchinson Cancer Research Center. Gralow discovered Pollastro’s cancer had metastasized to her liver.

“My husband and I were in shock,” said Pollastro of her mets diagnosis. “You don’t go from being cured to Stage 4.” Pollastro went on Herceptin, a type of immunotherapy for women with HER2 positive metastatic breast cancer, and did six months of chemotherapy.

“I felt better right away with the treatment,” she said. “But the problem is, it stopped [working]. That’s what you can expect with mets. And there’s always some residual cancer. And that starts percolating.” And along with mets, she also had to deal with many misconceptions regarding her disease. “People don’t understand the word metastatic to begin with,” she said. “They’d say, ‘Oh now you have liver cancer? How could that happen? Doesn’t it go to the other breast first? And when I’d tell them I was Stage 4, they’d give me pity or stay away or see me a year later and think I was a ghost. They couldn’t believe I was alive.”

The Mercer Island, Washington., mother of two, who often counsels newly diagnosed patients, sometimes even found it difficult to relate to early stage breast cancer survivors. “They’re like, ‘I did this’ and ‘I did that’ and ‘I beat cancer’ and they think they’re going to be fine and I think, ‘Well, so did I,’” she said. “Or people will ask me, ‘Aren’t you worried about all that radiation you’re getting from your scans?’ and I’ll think, ‘Are you kidding me? You think I’ve got a choice here?’”

New targeted therapies
As new treatments are slowly being approved, MBC patients are starting to have more choices, though. Gralow said the Human Genome Project has led to a much better understanding of breast cancer with all of its subsets and behavior patterns. Therapies are no longer “one-size-fits-all” but targeted for each cancer subset. 
“We still have a long way to go and we are still losing too many women … but there is a lot more hope for many years of good quality life for a patient diagnosed with a metastatic recurrence now than there was two decades ago,” she said.

One new drug, Perjeta, has shown particular promise when teamed with Herceptin and chemo, bumping survival rates in HER2-positive mets patients by nearly 16 months. “That’s meaningful,” said Gralow. “If you look at the old textbooks, we used to predict that you’d live a year or maybe two at most. And if you were HER2 positive, it was much shorter.”

Pollastro, who was on Herceptin for seven years, has also benefited from new therapies. In 2004, she participated in a vaccine clinical study run by Fred Hutch’s Dr. Nora Disis and also received targeted radiation therapy at a cancer treatment center in Rochester, New York. As a result, she’s currently NED (no evidence of disease). But she’s still cautious about using the word “cured.”

“The longer I go, the less worried I get,” she said. “But I feel like I’m on a merry-go-round and I keep waiting for it to stop. I’ve lost a lot of friends and feel bad about that. I have a little survivor’s guilt. But It’s like musical chairs. I keep wondering, ‘When am I going to miss the chair?’ So far, I’ve been lucky.” Schoger, whose disease has stabilized but not disappeared entirely, said she too feels lucky.

“I feel like I’m on Easy Street,” she said. “I’m not on chemo right now, I’m on endocrine therapy and it’s shrinking the cancer and relieving symptoms.” As for the stigma surrounding mets, there are signs that that, too, may be starting to shrink, thanks to the work of advocates.

“This is the first year since I can remember that I’ve seen media reports that have included women with metastatic disease,” said Schoger. “And the MBC Alliance report was very blunt about how the survivorship story has masked the issues of the mets community. If an alliance of breast cancer organizations comes out and makes that strong statement, that’s phenomenal progress. That’s a great step forward.”


Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has also written extensively about health issues for nbcnews.com, TODAY.com, CNN.com, MSN.com, Columns and several other publications. She also writes the breast cancer blog, doublewhammied.com.Reach her at dmapes@fredhutch.org.

Thanks for reading # 217 of 7777.

Sunday, May 17, 2015

# 216 A Rainy Day

“Rain clouds come floating in, not to muddy my days ahead, but to make me calm, happy and hopeful.” 
― rajuda

My day was to be filled with yard projects but alas! the rain has begun and I am inside looking out.  I will heed Rajuda's wise words and remain "calm, happy and hopeful".  A good book will cure my woes of an out of control weed filled garden.

My new philosophy regarding those nasty little monsters that grow where they are not welcome is that they may be underrated and there might be beauty underlying their bad reputation.  With that revelation I will embrace the disgusting little yellow and green things that are choking out my flower beds and turn a blind eye to what I should be doing to improve the aesthetic landscaping.

Whoa, my neighbor is outside, the sun is shining and her lawn looks a heck of a lot better than mine so will close this blog and tackle the pervasive little buggers.  Disregard the previous paragraph because although there is no prize at the end of the summer, I hate to see the dandelions and the garlic mustard reign over my treasured flower beds while hers are plucked free of the roaming rascals.

Thanks for reading #216 of 7777.


Saturday, May 16, 2015

# 215 Nature on Steriods

"Nature is the one place that miracles not only happen, but they happen all the time."  
Thomas Wolfe
Barbara's flowers

Is it just me or have the vibrant colors of nature exploded outside my living room window?  Is spring this year more lustrous than previous years?  Do the tulips look unusually radiant with their yellows, reds, pinks and purple colors basking in the sunlight?  And the greens--everything is looking like a rainforest on steroids.

 Or could this be about me, after a cancer diagnosis, who now appreciates and observes more closely the ubiquitous natural environment that I used to take for granted.  Stupid cancer teaching another lesson.

My backyard

Thanks for reading # 215 of 7777.


Friday, May 15, 2015

# 214 Love Those Researchers

After my chilly swim on Monday, the next day we traipsed off to the University of Kansas Cancer Center to meet with Dr. Danny Welch and some of his research team. Dr. Welch is one of the leaders in the world for metastatic cancers. We were given a presentation from several brilliant post graduate students, a couple of gifted PhD fellows and even a precocious (looked like a twelve year old) MD/PHD student. Fascinating stuff even for the non science nerds. What I gathered from the power points was progress is being made--slowly--but going in the right direction thanks to the supportive grants from METAvivor.

While speaking with the researchers I was in awe of their passion and commitment to find a cure or at least another drug to prolong our lives.  They were also interested in meeting us "metsters"--there were about six of us-- to put a face on why they are doing this work.

Rob and I were quite impressed and encouraged them to keep on keeping on because our lives depend on their findings.  It was a morning well spent after my swim.

Speaking of the swim, and not to bore you too much, but if you haven't seen the broadcast, below is the link.  Remember, there was no time to put on mascara or lipstick as the microphone was shoved into my face right after I had taken off my hoodie.  Cover your eyes if it is too offensive and just listen to the message. Hopefully my TV commentary will get better with time and practice.

http://fox4kc.com/2015/05/12/woman-with-stage-4-metastatic-breast-cancer-swims-across-lake/

Thanks for reading #214 of 7777. 

Thursday, May 14, 2015

#213 GDMFSOBS

First of all, let me say Heather is an extraordinary person and I had the pleasure of meeting her yesterday; and although it was our first meeting, our two hour coffee chat never had a moment of  awkward silence that sometimes happens when two strangers meet--that's what happens when two mets sisters find each other.  Between the two of us we had plenty to share and laugh and swear about and the time flew by.  Before we knew it, it was time to say good bye with plans to meet again and again and again.

The consensus is-- do NOT mess with us.  We have a plan and hopefully will get the troops (all of you) behind us as we live each day looking for that elusive cure for our GDMFSOBS* disease.

Heather is articulate, wildly funny and simply outrageous to be around so with that force backing my One Woman Many Lakes campaign, nothing can stop us.  Plus, she has friends who sound as outrageous and witty as she is.  Bring them on.  Not sure if any of them can swim but they are young, good looking and certainly will add the glamour to my swimming escapades that is sorely lacking.  This is not a "selfie" putdown, but there is no denying the difference between 60+ women and 30+ women--especially in a bathing suit.  I know, I know, we 60+ have the wisdom but when you are in front of a camera that doesn't always shine through.

So leave the swimming to me, and Heather and her cohorts can be the articulate ones on camera.  We are doing this for one important reason--show us the money for research and a cure and if you do, we will quietly retreat into the background with gigantic smiles on our faces.

* Our coded swear word that may some day be revealed on this blog.

Thanks for reading # 213 of 7777.


Wednesday, May 13, 2015

# 212 A Fellow Metster

I have the absolute pleasure of meeting with a mets sister for coffee today and it is a story that needs to be shared.  Brava magazine was responsible for this remarkable article and I can't wait to meet Heather in person.

 This is exactly why I keep swimming and hollering and ranting.  Let's kick cancer right out of here and find a cure.

http://pubs.royle.com/publication/?i=247561&p=20

Again, I apologize for making you cut and paste this article.  It's definitely worth the read so please don't be deterred by my inaptitude on the computer.

Thanks for reading #212 of 7777. 

Tuesday, May 12, 2015

#211 Lake Number Two, Check


That's us--all smiles before we hit the waves




Kayaker Rob preparing the ramming machine

I hate to brag, but yesterday was quite the swim if I do say so myself.  We arrived at Lake Hillsdale south of Kansas City to see the 17 mile an hour winds whipping the lake into a frenzy of white caps.  Two delightful women from Metavivor met us at the beach and after seeing that I was determined to get into the water they stopped trying to convince me to hang up the suit and became my best cheerleaders.

The water was a brisk 66 degrees so not outrageously cold but enough to keep me from falling asleep.  After about ten minutes I settled into a routine of swimming ten strokes, looking up to site the direction and then being blasted by a wave.  Seriously the water level must be down now because I did my share of swallowing mouthfuls of the relentlessly pounding (clean, I hope) water.

Rob was a trooper following me along and guiding the way.  Only once did he ram me--he insists I ran into him but really, I am focused on swimming and his job is only to watch out for me so you tell me who is right on this point.

 After my little tizzy fit in the middle of the lake, he stayed clear--a little too clear-- of me.  At one time into this adventure  I stopped and couldn't find him--where was he? Had he tipped over, sunk to the bottom and left me to my own demise? No, he was answering his phone and the winds blew him a 100 yards behind me.  Cell phones--I could have drowned because of a phone call? I can see the headlines now: Husband's cell phone call couldn't wait so cancer patient sinks swimming to find a cure.

2.2 miles later and I was greeted by a fan club of five hooting and hollering on the beach.  The TV station showed up and taped me swimming so I mustered up enough strength to look good that last 50 yards.  A quick interview (I babbled) and congratulations from everyone and I was flying high on life.

My babbling pose

Swimming--good for the soul.  Raising money and awareness-- better for me and my 155,000 mets friends.  A cure for metastatic breast cancer--the best, so let's make it happen. Donate to METAvivor.org.

Thanks for reading # 211 of 7777.


Monday, May 11, 2015

# 210 Swimming Towards a Cure

Stroke stroke stroke--lake # 2 for this year.

Swim day today at Hillsdale Lake near Kansas City.  Wish you could join me as I tackle the two miles from one beach to the opposite side of the lake.   Think warm water temperatures, no creepy crawly things and an alert kayaker.  Pictures and stories will follow.

Swimming in a lake, raising funds and awareness for metastatic breast cancer, living life.  Just another day at the office.

Thanks for reading #210 of 7777.

Sunday, May 10, 2015

# 209 Mother's Day

“Mothers hold their children’s hands for a short while, but their hearts forever.” – Unknown

Happy Mother's Day!  

Best Mother ever!



Best kids ever!
Thanks for reading # 209 of 7777.

Saturday, May 9, 2015

# 208 Two More Days

My swim is just around the corner so am anticipating an all out effort on my part to get from one side of the lake to the other without banging into or getting banged into by Rob, the kayaker.  The local ranger called and informed us it was approximately 1.8 miles across so I will do a little zig zagging and make it over two miles.  An over two mile swim makes it much more impressive than an under two miler.

If you are on Twitter, I will be tweeting before and after the swim--at least that's what my master tweeter children tell me I should do.  Hopefully thousands will be flocking to the beach to cheer me on.  Okay, maybe not thousands but at least a few more people than last time.  The ranger was interested so I only need three more and my previous audience will be doubled.

Below is the press release that my PR man, Rob, has been sending out to the media.  I need to be calm and proactively practice speaking in front of a camera and not resort to babbling like an idiot. Please send positive thoughts for an articulate voice for the women and men afflicted with MBC, but most importantly, keep me from the babbles.


Wisconsin Woman Suffering from Late Stage 

Breast Cancer to Swim Lake Hillsdale May 11

Swimming quest across country to raise research money 

specifically for fighting terminal breast cancers

May 7, 2015 (Madison, WI)
Cancer patient Mary Gooze, age 63, of Oregon, Wisconsin, has decided to go on the offensive against the disease and use her remaining time to educate people about late-stage cancer and raise money for research to cure it. 
On May 11, Gooze will swim across Lake Hillsdale at 10:00 a.m. to raise money for the non-profit, METAvivor! (Hillsdale State Park is south of Olathe, KS, between Spring Hill and Paola, three miles east of US-169K-7 and 255th St. interchange.)

Although Gooze is struggling with late stage cancer, “I decided to focus my days doing something that I loved. I plan to swim across as many lakes as possible, bringing awareness and funding to metastatic breast cancer,” said Gooze. 

Since the cancer has spread to her bones, there are no treatments that can cure Gooze. Unfortunately, funding is sparse for research that explores how best to fight late-stage cancer and that’s why Gooze has chosen to literally dive into this fight. Her first swimming campaign of 2015 was at Lake Patagonia in Arizona. After Hillsdale Lake, she will swim all five lakes in Madison, Wisconsin and then on to northern Wisconsin and Minnesota to attempt more lakes.

Gooze is the 2015 recipient of the Wisconsin Coaches vs. Cancer Spirit of Hope Award honoring an individual who displays courage, passion and hope to those around him/her.

METAvivor is dedicated to the specific fight of women and men living with stage 4 metastatic breast cancer. At the time of METAvivor’s founding, no organization was dedicated to funding research for the disease and no patient groups were speaking out about the dearth of stage 4 cancer research.  While more and more people have taken up the cry for more stage IV research, METAvivor remains the sole US organization dedicated to awarding annual stage IV breast cancer research.

Thanks for reading # 208 of 7777.






Friday, May 8, 2015

#207 #RealHopeIs


Well said, Lori.  You are speaking for all of us.

http://youtu.be/NH4ED5opHZQ

Hopefully my computer talented daughter figured this out and you can open the site.  Ahhh!  Technology and the tango--two things I can not do.

Thanks for reading # 207 of 7777.

Thursday, May 7, 2015

# 206 An Early Mother's Day Gift

This is only a suggestion.  Mother's Day is around the corner and as much as you love your mother or your children love you don't you think a donation to either Metavivor.org or American Cancer Society would be a splendid gift for that special day?

Gifts from the heart are genuine but giving to save a life is priceless.  Candles or flowers or candies can wait.  Anyone with cancer can not.

Happy Mother's Day to all those magnificent mothers in the world.

Thanks for reading # 206 of 7777.

Wednesday, May 6, 2015

# 205 Tuna Love

Dinner prepared by my sweet husband. 

 I was delighted when I sat down at the table and saw that in his unique tender way, Rob was again showing me how much he loved me by preparing tuna in the shape of a heart.  Unfortunately in reality, after I pointed out his affectionate display of love, his comment back to me was, "I don't see a heart".

The balloon of love immediately fizzled as he was not quick enough to capitalize on the perfect opportunity to say, "Of course, my dear, I put love into every meal I make for you".  It would have earned him massive brownie points.

Ah! Rob.  The finest chef around but a tad slow on wooing a woman.

Thanks for reading # 205 of 7777.

Monday, May 4, 2015

# 204 An Evening to Remember


What an incredible way to spend a Saturday night as American Cancer Society's  Coaches vs. Cancer event honored me with the Spirit of Hope award.  I was quite humbled by their gracious act of publicly supporting me and even though I don't like the added attention especially in front of hundreds of people, I felt the love and good vibes flowing throughout the Kohl Center. Everyone in the arena had the same goal as Coach Bo and me--find a cure now.  Knowing how driven Coach Ryan is on the basketball court, he takes that drive a step further with the fight against cancer--and is determined to win.  

It was a rewarding evening with 1.2 million dollars raised that left me and others speechless.  Fortunately the TV announcer interviewed me before I became mute, however, I'm not sure that can be an excuse for my rambling.  

Congratulations to ACS for a beautiful and profitable evening where everyone walked away a winner.

Thanks for reading # 204 of 7777.

# 203 #MetsMonday

Tell me, why would you swim all those lakes and why the heck are you sitting in the Firefly for twelve hours on this gorgeous day?  Those were a few of the questions posed to me last Monday as I greeted people at the coffee shop on my #Metsmonday campaign.  I paused and had to think.  Why am I doing this?  I love to swim so that seems like an easy answer but I also am facing cancer without a cure and that's the tougher answer.  The reason is, it isn't just about me.

 There are thousands of "me's" but the difference is they have young children who have the same diagnosis--30 years my junior--and it is a very very scary time for them.  Reflecting back to my younger years with children hanging on my body demanding food, care, diaper changes, etc. etc. etc., I had no extra energy for anything besides survival mode.  Throw cancer into the mix and you are sliding down the edge on a steep cliff.  These women do not have one ounce of energy left to campaign, raise funds, scream their lungs out about this injustice to their bodies. They just want to see their babies grow up.

Me, on the other hand, have grown independent children, am retired and I have time to do this. It is my job now to reach out, ask the questions and demand answers to why we are not there yet.  Why there isn't a cure and why so many are still dying from this disease.

So I will jump into many lakes, holler until I'm hoarse and speak for those who are unable.  It's the only choice I have and I am gladly taking on that responsibility. There are over 155,000+ of us and if we don't help each other fight the fight, who will?

Thanks for reading #203 of 7777.

Sunday, May 3, 2015

# 202 That Was Punny


Thank goodness we live in the USA.  According to an article in qz.com, the silly little puns are banned in China.  Maybe the last one should be dedicated to the Chinese government...

From qz.com

Puns and other word games

"The late November ban on “the irregular and inaccurate use of the Chinese language, especially the misuse of idioms,” technically only applies to press, broadcast and advertisements, but it carries a chilling message to China’s netizens: the party is not amused by your clever use of wordplay to discuss verboten topics online."


So to the rest of us, let's hope these puns put a smile on your face.


To write with a broken pencil is pointless.

Show me a piano falling down a mineshaft and I'll show you A-flat minor.

When Peter Pan punches, they Neverland.

I did a theatrical performance about puns. Really it was just a play on words.

A bicycle can't stand on its own because it is two-tired.

There was once a cross-eyed teacher who couldn't control his pupils.

A small boy swallowed some coins and was taken to a hospital. When his grandmother telephoned to ask how he was a nurse said 'No change yet'.

The butcher backed up into the meat grinder and got a little behind in his work.

I was struggling to figure out how lightning works then it struck me.

A new type of broom came out, it is sweeping the nation.

From Punoftheday.com

Thanks for reading # 202 of 7777.

Saturday, May 2, 2015

# 201 Sisters



"Sisters function as safety nets in a chaotic world simply by being there for each other."
by Carol Saline 


Sisters. I'm lucky to have one on either side of me in the sibling order so that makes me smack dab in the middle of either drama or fun--and there has always been plenty of both. As I write, they are heading this way from Michigan--a six and half hour drive (oops, forgot my lead footed brother-in-law is driving so they will be here sooner rather than later) to spend the day and evening celebrating an honor that was bestowed upon me by the American Cancer Society.

To say I am thrilled that they are coming is an understatement. Spending that many hours in a car on very little notice says volumes of the importance of family and the ties that bind us but there wasn't a hesitation when they were asked if maybe they could get away for a quick jaunt to Wisconsin.

Growing up we had the usual trials and tribulations of sibling rivalry but the drama of those earlier years fades away as I remember the laughter and silliness that only three young girls can conjure up. Our poor father would temporarily be at a loss for words when we would explode into out "pee pee" laughing mode. I do recall a shaking of the head and a reprimand to stop what we were doing. Of course that only led to an eruption of giggles making him yearn for a male companion to combat the hysteria that frequently surfaced from the back seat of our car.

Ahhh! The memories of our youth. Not too much has changed but it will be a delightful weekend of catching up and, of course, major silliness thrown in for the sole purpose of driving my speeding brother-in-law and my eye rolling husband crazy.

Thanks for reading # 201 of 7777.