I have a Dream: A Cancer Cure

What does January 15th mean to you? 
Today is my dad's birthday. For a couple of more minutes. 
Today is also Dr. Martin Luther King, Jr.'s actual date of birth. 

January Fifteenth. 
My dad and Martin. Quite a day in the history of me. And of America. 
I shared my thoughts on their joint day here last year. I even made the article a "Linky" so that other bloggers could add their ideas on ways to honor the day. By all means check it out for inspiration. {Here ends the excellence-in-education portion of this article. If you came searching for bulletin board inspiration ~~ you may feel free to return to Pinterest. I won't be offended. Come back tomorrow, cuz I've got a great set of 'winter' ideas to share.}

January 15th, 2013. Start thinking pink. 
I've just had a chance to call my dad and I've serenaded him and so now I find my mind turns to the 'other' more recent, meaning of January 15th in my life. Today is also the third anniversary of the surgery of my bilateral mastectomy. 
A milestone, to be certain. Life altering. Life affirming. 

Let's go back to January 15th, 2010. Start thinking pink. 
I purposefully considered and then chose my father's birthday for this milestone in my life, because I thought just sharing this date for my body-altering event would loan me strength. As I awaited surgery with my heart pounding and head racing, I felt that the good-luck charm of my daddy's birthday cake hovering there on the calendar, would calmly and confidently move me forward into the unknown. I knew me well. 

So what thoughts do I have that are even quasi- appropriate here today, 
Jan. 15th, 2013? What can I articulate worth sharing? What has three years of reflection and healing brought me? What do I think you might benefit from reading? Let me mush on and then edit liberally. 

First thing. Keep in mind that we are just now back from a cruise to sand-swept islands, where everyone was clad in bathing suits for large slices of the day, so my immediate thoughts are probably skewed in the direction of body image. Mid January in the midwest is considerably different than on the islands. Months on end, wearing turtle necks and heavy wool sweaters is considerably different than time-on-end in extreme sunshine round swimming pools. 'Nuff said. Turns out displaying cleavage is an international obsession  attraction goal  reality.

Yes. There are still times I 'catch' myself gawking at that dramatic cleavage, obviously-on-display, apparently seeking answers to unknown questions on behalf of my own sunken, puckered, no-longer-bruised chest. {Have I mentioned previously that I chose NOT to have plastic surgery? That's a subject worthy of next year's rant.} There's a place in my grown-up mature brain that says, "Debbie this was your decision." Then the antagonist on my other shoulder says, something purely Reptilian and antagonistic that starts off with, "Yeah, but... and ends with: look at that!" 

The next series of interactions between these two cartoon characters on my shoulders usually includes reminders of the facts of history and the truth that Victoria had always kept her Secrets from me, this cantilevering of body parts had always exceeded my capability. That truth is followed by a wistful walk down memory lane that includes bittersweet stops to a dank gym-class locker room as I first notice that Prszby is bursting out of her training bra while I stand there is an undershirt with a ribbon. That memory is followed in quick succession by a summer camp comment that I thought was directed at my favorite appliqued butterfly t-shirt having bodacious curves. Then eventually, me finally catching onto that pimple laden 'compliment' not referencing the applique at all, but my own emergence from chrysalis. Finally my spin-the-bottle memory nonsense concludes the parade of time. Puberty. Gotta LUV it. 

My breasts served me well. They nursed my babies till they took their first steps. They did what they were designed to do. They performed with incredible capability and efficiency when called upon to provide life. A wonder of the world, my breasts. Small by Hollywood standards, but mighty in the greater scheme of things. Brilliant. Bravo. Breasts!

Fast forward a few decades. Relax. I'll keep this all PG-13, but let me raise an eyebrow just far enough to tell you that I continued to appreciate every aspect of having  my breasts available on a daily basis. True. My breasts were never part of my 'professional' package, I never counted on the cantilevering for my career, but they continued to serve me well in private. Nuff said. Wink-wink. Insert steamie-face emoticon here. Turns out to be a good thing that I never counted on cleavage for my career advancement. 

The truth is that three years is plenty of time NOT to mentally gasp when I step out of the shower in front of all of those mirrors. Yet 3 years is still apparently before I quit attempting to imagine all the pleasure sensations that are long since gone. Breast Cancer. Gotta HATE it. 

Having a husband demonstrate his support on a daily basis, through the 'in-sickness' part of the vows is a blessing beyond measure. I am richly blessed. I know that from the tips of my toes to the tops of my torso. He wins. My gift from heaven this man. Thank you, honey. From the bottom of my tear-stained heart. [I know of many other women not so blessed. I know first hand the stories of marriages ended with the intrusion of the beast. I know of families torn apart. I know of professions ended. There are anals of conversations filled with sadness and suffering unforeseen prior to diagnosis. Thank goodness in this day and age, there is a support system for survivors, just a click away.]

You wanna know what really prompted my going public with a few thoughts late in the day? I  just received the news that yet another brilliant woman I admired immensely, perished this weekend from the beast. Yes. That means that she died from Breast Cancer. Dead. Died. Forever. Dead. 

She was brilliant in so many ways. She was a professional musician as evidenced here, but to those of us in the BC community she was equal parts storyteller, poet, comedian, master-gardener, cheerleader, humorist and general all round Renaissance persona. Over this past year I have traded my daily screen-hours at BCO for hours amid bloggers, so I wasn't aware of our favorite fruit's final descent. My last Apple-interactions were indeed about faith and poems, during our mutual friend Saint's own last days. Apple offered us immense doses of each: poetry and faith, and we were profoundly grateful. I found the announcement of her death on FB. So I was caught completely off-guard.  I'm still rocked. Indeed. Knocked completely over.  A world without our-Apple? Who would want to imagine? What a loss. Words are inadequate. Pointless at a moment like this. Words. Words. Words. Sorrow. Sorrow. Sorrow. 

So on the third anniversary of my being cancer free (for my second diagnosis of early stage BC, hence the bilaterial. Yes. My first diagnosis was just months after I turned 50. Two plus years prior to this anniversary. I told you I have a LOT of cancerversaries.) I find myself absolutely aghast. Angry. It has nothing to do with my body image, but with this constant and never ending loss of brilliance. Loss of gifts in their prime. Loss of creativity. Loss of such magnitude. Where is the outcry? Where are the screaming masses? Where is the outpouring of emotion that turns the tide? What is it going to take? Who will we have to lose, that will galvanize the powers-in-charge to make monumental progress -- dare I say it? 

"I have a dream." 

My dream has just four letters. 

C-U-R-E

Yes. Three years is long enough to heal scars. With the ever present reality of shallow-end-of-the-pool early Lymphedema also in my system (the seldom discussed ramification in all of those pink BC pamphlets,) I continue to survive. Surviving is such a mixed bag on cancerversaries. There are so many components jumbled together in my ever-shifting stew: survivors guilt, triumph, memories of specific procedures both archaic and cutting edge, aftermath of complications, followed by more unforeseen complications, firing my surgeon-seeking a whole new team to undo complications, moving forward, clothes that never fit, that continual heaviness across my back and through my arm that never relents, pain always there, months and months and months and months and months of physical therapy required to enable me to lift my right/dominant hand above my head, pure delight at the dawn of this new day..... its all there for examination on January 15th. Stew indeed. 

In the end, I am ever so grateful to have my father at the helm still guiding and offering example by his firm foundation -- having his daily prayers on my behalf shore up the loose edges when I feel frayed. Sharing the day with Dr. Martin, I dream of lives that are whole from birth to natural death. I dream of lives of contribution that rattle on and on. 

Having January 15, 2013 and a screen in front of me, I pay tribute to those whom present day science has failed. I honor those we've lost. Imagining Apple and Saint together with AlaskaDeb, Bethie, HeidiHo, Connie1, CTG and Watson is a table of raucous giggles most glorious indeed. That their table must continue to add more chairs surely means that their Heavenly committee can move this research forward. These are women I met. Women I knew. Women science failed. Women my age and YOUNGER gone. Dead. Children without mothers. Tables set without mom. Holidays celebrated with no wife at the helm. 

I honor those still taking one step at a time on this Planet Earth. Surviving is the greatest honor available. I have the sash to prove it! I am deeply humbled to have that honor and responsibility. I will do everything in my power to 'survive' and THRIVE. Mary and Pat would accept nothing less. I am the poster-child for 'early detection saves lives.' We are each the best advocate for our own health. I am the cautionary tale. Listen. Listen I say! Do everything in your power to safeguard it. Get some exercise. Eat some veggies. Have your mammograms on a timely basis. Breath deeply. Relax. Seek balance. Join me in the prayer for a cure.  

-- Debbie -- 

Resilience is a gift. Mine seems to be continually tested. After my first set of surgeries in 2007 and the 36 trips to the hospital for radiation therapy and the prescription of Tamoxifan, I was supposedly to have less than a 1% chance of recurrence. Yup. less than 1% is what science predicted. You know that means one in a hundred ends up starting over with a second diagnosis. Yup. I'm the one in a hundred that statistic describes. Had to be somebody. I appreciate your continued support. I count on it. I count on your prayers. I count on your gentle hugs when we're together. We have daughters, a daughter-in-law and 2 grand-girls..... a total of 7 grandchildren. 

I dream of a day when this scourge is gone. Gone forever. I dream of a C-U-R-E. 

can I have an amen? 

Thoughts from a Breast Cancer Survivor at 5 Year Mark

October: Breast Cancer. Pink. Survivor. 

WARNING: not-for-the-faint of heart.

The best part about being five + years out? 

I'm back to my 'real life.'

My real life right now is one delicious, delightful, topsy-turvy whirlwind of joy.

My whirlwind includes travel. Professional thrills. 

Grand-kiddos. Blogging. New creative projects.

Periodically its well worth it to recognize how that joy is built. 

I am a survivor and every new day is reason for a party!

October is the month of pink. It's the month of pink walks and pink ribbons and pink heart-felt commercials and pink sporting events -- even football players wearing pink accessories. Everywhere you look there's a pink reminder. 

I am a two time survivor of early stage breast cancer, so the world being awash with pink fills my heart with a whole host of emotions not all of which can be appropriately expressed by the color pink. All this pink swirls together and creates a rather frothy pink reminder of the muck of my own roller-coaster madness of ups and downs in my own battle with the pink beast. 

Don't get me wrong right at the beginning of my wandering, scattered thoughts. 
I'm grateful. In fact I'm very grateful! 

I'm grateful for support. I'm grateful for the candor where 'we' can talk about this heinous disease. Decades ago I would have suffered in silence, as that was the norm. I would have held my tongue, as that was the expectation. I would have been isolated, as that was the reality. Now there are all manner of  pink support groups, and pink pamphlets. The pink doesn't stop there. There are pink yogurt lids, pink cars and pink airplanes. You name it. You can get it with a pink ribbon applied. All this pink in the name of Breast Cancer Awareness. 

Here comes some candor. In the year 2012, I think the world is indeed "aware." In fact, I was greeted on my flight this weekend by Delta flight stewards dressed in pink from head to toe. Aware indeed. Where does all of this money from ribbons and awareness get funneled? That is a burning question being asked by the sistah-hood of the sorority no one wants to join. There is even a movement within the survivor community to remind folks to "think, before you pink." 

It seems to some in the survivor community that our disease of disfigurement, scars and suffering has become something of an ad-campaign in the hands of a marketing machine. The "think, before you pink" sentiment is a reminder to learn where your contributions are headed. There are many ways to funnel your hard earned financial contributions into the hands of those doing research-- if that is your hope. Or perhaps you want your contribution to go directly to a patient wondering how she will pay for the gas to get to her daily radiation treatments. Think. Learn where your dollars are headed. Hence the THINK portion of the "think, before you pink." 

[Would you be shocked to know that there is an annual thread of photographs circulated in the BC survivor community where survivors take pictures of the.most.ridiculous.use.of.a.pink.ribbon? Pure craziness abounds, where some of these ribbons are applied. I'll never forget while I was still fighting the cumulative effects of daily radiation which was then followed by an agonizing case of shingles, that had been exasperated by the burning of my flesh for the best possible outcome, that I saw a pink ribbon on a massive bag of dog food. It was my first Pinktober. It just stopped me in my tracks and brought on tears in the grocery store. Dog food + Pink ribbon = BIZARRE. That's the thing about surviving. Ya never know when a whole new set of emotions will strike you in the pet aisle of your local grocery. Think, before you pink.]

Back to Delta and their years long campaign of pink lemonade offered on board every flight. Their efforts have raised millions with proceeds going to The Breast Cancer Research Foundation. BRILLIANT! I LUV'd reading of their campaign in the airline's magazine. Dedication to research. Millions. This little tangent is included as part of my ramblings, because it literally unfolded before my very eyes in the last couple of days. YEAH RESEARCH!

Now lets get a little more personal. My story. My experience in a nutshell.

A quick recap:

 I turned fifty. 

Went for my normal routine mammogram as I'd done many times before.

Not exactly fun, but I went skipping in + out of the process, not blinking. 

THEN. 

I got the call that no one wants to get. 

"We need you to come back. We have some concerns." 

That was on a Thursday. I was able to get a biopsy scheduled for less that 18 hours later. (Kinda unheard of. VERY grateful to get on with the battle.) News came back on Monday. 

As they had suspected: Ductal Carcinoma InSitu, does that look better in pink?  

This is the part where everyone tells me how lucky I am. 

I know nothing about Breast Cancer..... and have NOT sensed my luck at that point of my story. 

After two surgical consultations, I had a partial mastectomy the very next Friday. Barely over a week from dx-diagnosis to life changing surgery. Let's get on with this - was my response to it all, the sooner the better. From there I made 36 trips to the hospital to complete radiation..... to give me the very best odds against any sort of recurrence. I also began taking the daily medication, Tamoxofin with a host of its own side effects and concerns, but theoretically it could further cut my odds of recurrence in half. Let's take the aggressive route. 

Do it all. 

With the early stage, my age, my treatment choices -- 

my odds of facing Breast Cancer again, in the words of my oncologist were approximately 1 to 2 % or possibly even less. Cancer is an inexact science. 

You know the thing about odds? If its one in a hundred, someone STILL needs to be that person. I went on planning to be one of the fortunate 98-99.  

I gradually regained my life already in progress. I continued having diagnostic mammos every 6 months. Eighteen months later there was concern all over again. 

I was put on a 'wait-and-watch' regimen. (Kinda like hell on earth..... don't think about that pink elephant dancing in your hallway.) 

Turns out, I was indeed the one in a hundred. New tears. New tilt-o-whirl. New tests. Since I had already gone for the partial + rads route on the first episode, there was no alternative but to go full mastectomy the second time around. Many personal decisions were made on how to get me back to the life I loved as quickly and directly as possible. 

This is where my story goes from bad to worse. While the second diagnosis was also staged as DCIS, my sequel included an awful infection at the site of my chest wide incision. I'll spare you the details. Just suffice to say that 'it' was ugly. Seriously ugly. Hardly any shade of pink at all. 

The infection created a whole host of issues that included frozen shoulder and the very little discussed parallel hardship of Lymphedema. How can I summarize that chapter? That was the exact same time frame when my dearest friend, BC mentor and one of the all round world's-best-persons was dying of our pink disease.

Saint and Faith

While I was going to physical therapy several times a week to regain use of my right arm, we spoke on the phone anywhere from two times a day to a dozen. We were lifelines for each other. It seemed a little shallow of me to be concerned about my arm when she was losing all sorts of her capacity to be human. 

So we talked. And cried. And I read to her the support posted at our BCO (Breast Cancer Organization)  sisterhood, because at that point she could no longer see. She could no longer read. So I read to her and then typed out her responses. I read favorite scripture verses. I read poetry. And we laughed. We laughed at each other and we told stories. I told her daily that she defied her death sentence just so she could keep me company during those darkest hours. 

Saint and Faith. Faith and Saint. 

The pink beast took my dear friend. She was one of 40,000 'survivors' to have current science fail her in that particular calendar year. She died. Game over. I miss her like crazy. She was 'my people.' During those hundreds and hundreds of hours of phone conversations I did indeed have ample opportunity to reflect on my good luck. 

So theoretically I am five years and seven months past my first diagnosis, but I suppose I need to start that clock counting all over again. I am now two years and ten months and three weeks past the second diagnosis. The use of my right arm will never be the same. I have to always be aware of the risk and threat of Lymphedema and do my best to keep that chronic and debilitating condition also in the 'shallow end of the pool.'

In my five years I've learned much about myself. I've learned about the compassion of total strangers. I've also learned the harsh reality of 'friends' who shocked me with their insensitivity. Let me tell you that it is NOT appropriate to open the quilted jacket of a woman who has just had a bilateral mastectomy and say, "So, just how flat are you?" How could I make that up? Really? 

What would I suggest that you say to your dearest friend walking the line of keeping sanity in the midst of diagnosis and treatment? What upbeat insight? (I've been working on this article all day and will probably keep editing it over the days ahead.) 

• Suggest they go to Breast Cancer dot org: BCO. 
• Be present. No need for presents necessarily. Just be there.
• Ask your friend how they are doing and then listen. 
• Ask your friend what they need. Ask what they need to hear.  
• Send a happy card. Nonsense even. Thinking of you.
• Offer to fold laundry or run errands or sit and have a cup of tea.
• Don't tell of that acquaintance' wife who just died of BC. 
• Respect the decision making process your friend selects. 
• Be very wary of sending an email of the world's least known cure.
• Ask if your friend wants an entire assortment of pink ribbon jewelry and a whole new wardrobe of BC pink ribbon gear. The entire spectrum of reactions to the pink ribbon are to be anticipated and may change from day-to-day.
• Accept all of the emotions your friend expresses.
• Listen. Listen. Listen. 

Are we closer to a CURE today? What I know for sure is that primarily women stand to lose so much from this disease. It's certainly not just physique that is at stake. So many have lost their livelihood, their creativity, their drive, their professional standing, their finances and even their marriages. The time for 'awareness' has passed, in my humble opinion. The time for support has arrived. The time for a CURE is sorely needed. Learn how and where your contributions are headed. Beat the drum. Say a prayer. Imagine a world without Breast Cancer. Imagine a world without cancer at all! 



A group of 'kid bloggers' have joined together to offer thoughts of support on going pink. You'll find everyone's article grouped here below.I am so fortunate to belong to this encouraging group and I'm genuinely delighted to contribute my long ramble in the hopes of prompting one person toward self-care, or one person to receive encouragement. 

-- Debbie -- 

INDIE Award Reflections

Today is the first day of my life that I woke as the winner of a national book award. To say the air smelled crisper and the breeze blew sweeter may have been due to a shift in the barometer, but as I took myself out for my morning walk -- I swear the familiar sights of home had ratchet up to a new level on the joy-o-meter scale and seemingly over night.


Walking to the top of the big hill felt invigorating, rather than exhausting. Observing the nonexistent horizon line between water's edge and sky's fall was utterly fascinating this morning. Though I've remarked on this phenomena previously -- today was sheer marvel, utter poetry to the eye. Affirmation is an elixir apparently. Fixin' all that ails ya. Sumptin' like snake oil. Workin' out all the wrinkles with a shiny gold sticker. Validation is worth its weight in gold!


I walked and pondered, laughing to myself in a manner that could cast me as the village 'character.' You know. The one discussed by the long-term locals at the gas pump with a raised eye brow. Didn't matter. Had someone installed springs in my ol' faithful tennies? Coming to the local swimming hole I spied the slim swath of sand. Bing! My shimmery award is similar to a sand structure: fleeting at best, but fun in the moment. This morning I skipped about basking in the ephemeral after glow. I thought next of how it was possible that my project was selected.


There at the sand we had once shared, it seemed most likely that my dear now-a-genuine-angel-in-heaven friend, Saint, probably shepherded my book to the right judge at just the right moment. You do the math. This is my third book. I have entered every one of my books in every possible 'program' I could find for recognition. This is the first time to garner the win. This is the first season of my book being eligible & Pat being heavenward. (Read old post of Saint's joining the angels here.) Add it up. I just gotta think she had something to do with it. And I hummed the camp song, "If you get to heaven, before I do, just drill a hole and pull me through." Remembering when we'd entertain ourselves during her final phone calls with camp sing-a-longs, I thought about gratitude and loss. About promises made to one another. I thought about her impact on me. I thought about intentionality. I thought about celebration in the midst of it all. Thanks Pat. I give you all the credit in the world. When I was at an absolute loss as to how to proceed -- I would remember my promises, and I would tip-toe forward. I would tip-toe in gratitude for the opportunity to be willing to work.

Once I'd found that trusty sand-writin' stick I had plenty of thankin' to do. I thought of all my sisters-of-swell. The chosen few in our Breast Cancer community for whom lymph nodes have abandoned their functionality. I thought back to last summer and my absolute hissy fitS over being unable to use, to lift, to glide my heavy steam iron, the one I'd purchased specifically to press the fabric of my quilts -- steam & brute force were supposed to demand the pieces cooperate. No more. My arm wasn't up to the task. It was one of my swell sisters that suggested softly that I may need to adapt and use a lighter iron. I wailed for a while. I had a melt down or two. I kicked my feet and had a temper tantrum. I stalled. I wailed some more. All the while they listened. They cajoled and consoled and passed the cyber-brownies and eventually said, 'Enough! get on with it.' And I used a different iron. And I made progress. And I finished the book. And I thank you for those swell brownies!

The danger of receiving an award is immediately you realize how many debts you owe. Compiling the thank you list is never enough. It's never inclusive enough. It's never broad enough. It's never specific enough. So I'll thank everyone at BCO (Breast Cancer dot Org), members current and members who have had their membership expire far too soon. Thanks from the bottom of my heart. You are my mentors. You are my torch bearers. You are my cheer-leaders and co-conspirators.

My picture book, like most of it's traditional ilk, has 32 pages. That's 16 quilts to make. I had gotten off to a flying start after the release of my first book and had 4 quilts done in a heart beat. I loved bar graphs in elementary school: that's twenty-five percent done! Yippee, I'm off to the races.

That's when I received my first diagnosis of (early) Breast Cancer and the wheels came off my tricycle for a while. Eventually I got moving forward again and as time unfolded I got another EIGHT quilts finished!!!! Whoooohooooo. Three fourths of the way done!!!!! The finish line in sight. Well past the half-way hurdle. THUD. Diagnosis #2. THUD THUD THUD THUD THUD. In the end it took over five years to get all 16 quilts accomplished. FIVE years for goodness sake. I'm sure there's a moral to that story somewhere. Baby steps over time yada yada yada. Progress adds up, if ya keep movin.' Yesterday came the affirmation, the validation and the resounding victory -- that all of those efforts and stalls and screeching halts didn't matter. In the end it had added up to a finished project. And now? Now it has a shiny gold sticker.

It could have been Konakat joining Saint and Heidi-Ho in heaven that noodled & elbowed my book to the top of the pile. (To begin that list is just too much to ponder. I will let those 3 names represent the 40,000 women who will perish this year.) They were all such lovers of books. I know we've lost so much talent, so much laughter, so much joy. Thinking of them making their heavenly ruckus and sprinkling glimmers of shiny things into the lives of ones who would notice their antics, makes me sigh and smile.

Thanks to absolutely everyone at BCO for the listening ears, the swift kicks in the pants, the camaraderie, the encouragement and the support, the caring, kindness and understanding, the ever present safety net and sistah-hood. I accept these shiny gold stickers on your behalf and in your honor. It takes a village indeed. Today's gratitude goes to my cyber-family and to all who have had their lives come derailed with adversity. Here's to perseverance!!! Here's to baby steps & a lighter iron!! And pass the brownies of course!!!!

Click here for the definitive site for Lymphedema information.

Click here to see lots of old posts I remembered to tag: BCO Buddies.

Click here to enter to win a signed book: Contest.

Lymphedema Fashion Scarf

"Adversity has the effect of eliciting talents which, in prosperous circumstances, would have lain dormant." --Horace, Roman poet

I've made a commitment to the challenge, 31 Days to Build a Better Blog. It's a brilliant program. Recommend it highly!! I'm learning a lot in the process, though I personally am on the 31 'week' roll-out. [Talking now to myself: it's all about the baby steps, right? Take enough baby steps in the right direction and there is eventually some measurable progress. BTW: this summer I'm also on the 'what-in-the-world-is-Twitter-and-how-can-I-integrate-it's resources' plan, which may prove to be a 31 year cycle. LOL The only place that I seem to be making real traction is over on LinkedIN, where I do seem to be able to navigate, connect and learn. Maybe it's because people speak in full sentences there?] Not at all sure how this post fits into the 31DBBB, but here we go.

Since I actually do have some new 'readers' and I can tell this because I have figured out how to look at my blog analytics, whooop whooop, I probably need to preface this post with an announcement. "My name is Debbie and I am a two-time survivor of early Breast Cancer." I am also in the daily trenches of surviving BC's chronic 'dirty-little-secret' of Lymphedema. LE is indeed a potentially life ending diagnosis, but beyond that little attention getter, it poses a daily & never ending array of life-challenging agonies, concerns and frustrations. Don't be surprised if you've never heard of LE. Based on my experience & that of a goodly number of my 'swell' LE friends, neither has much of the medical community. Grrrrrrrrrrr.

Like my early BC diagnosis, I am also in the short-end of the LE pool and I'm making it my daily work to stay here. Due to my various surgical procedures plus radiation and its aftermath plus a variety of other complications and set-backs, I have lymph nodes that no longer function properly. Ya never know how significant your lymph nodes are -- until they get rearranged and quit smiling. My right arm (and yes I am right handed) no longer feels like it's mine. It doesn't feel like it belongs to me. It's heavy. It tires. It's dingy, pingy, Grumpy, sleepy and several of the other seven dwarfs as well, tho not Sneezy. I have a whole host of protective, proactive behaviors and exercises. You don't even want to know about the threat from mosquito bites, I kid you not! Genuine threat the skeeters. Grrrrrrrrrrr.

The long and the short of it? I need to protect my effected arm by wearing a compression sleeve. I also wear other compression garments for various reasons and purposes, but that's a whole different story and post. Today is about summer. Heat. Ugly sleeve. Intrusive questions from total strangers. [Like the waiter who looked at my compression sleeve and said with an air of knowing superiority, "Drug addiction issues, eh?" Nothing like an insightful waiter. How could I make that up?] This post is about my occasional desiring not to be a billboard for BC/LE. Going under-cover. Yes and fashion! Being the fashion maven that you've come to recognize here, you know how fashion plays a large part of my mindset. Here's what I wrote last month over at BCO.

When we were in Europe, earlier this spring, EVERYONE was wearing scarves. Scarves were available EVERYwhere, in every possible design.

I bought a 6 foot scarf that is made of one continuous piece of 'pre-pleated' fabric which measures about 20 inches in it's natural/scrunchie state. It measures about 40 inches when the fabric is pulled to it's max width or flattened.

Anyhow. Quite by accident, while in Europe I wrapped the scarf around my compression sleeved arm while wearing a tank top. A little tuck here and there and I could have one 'naked' arm and one bare shoulder. VOILA!!!!!

For the first time in the summer I felt like I didn't need to be 'on guard' from total strangers asking what I'd done to my arm. Oh happy day!!

Today, a delightfully warm summer day in the low 80's, we went to see "Jersey Boys" and I decided to use my European scarf idea again & wanted it not to flop/slip around so much --with me tugging. So I made the scarf into a 'tube' by sewing it closed at one edge to slide my compression sleeve'd arm into and then just draped the rest of the length of the scarf around my neck. The sewing it shut/tube is a more permanent solution for using the scarf as a dressy hiding spot. I hope that this makes sense.

I have been experimenting with scarves for the last month.

Having enough length in the scarf seems to be the real solution -- especially for the body-draping concept. I hope that the illustration gives the impression of just a scarf draped oh so casually across the shoulder (to the on-looker.)

The tube affair is the real camouflage.

As you may be realizing, I am now at the point of wearing just a sleeve for 'everyday' sitting at the theater events. I still wear my gauntlet when doing anything physical, flying etc etc.

I think with enough material in the scarf you could put a little stitch in the very end to create a mitten effect and still hide an entire gauntlet with ease.

The response from my LE cyber-friends round the globe has been awesome. They like it! They like it! I share here, just in case someone googles up LE and fashion (yeah, right!) My original post from BCO has been moved to the site specific for LE created by a trio of the kindest, most brilliant women on the planet called Step Up, Speak Out. It is an end-all, be-all site for support info and all things LE.

I hope that my sharing the same idea here, in this format gives some of my dear friends and supporters just a little further insight it what it means to be a survivor on a daily basis. If the post accomplishes that in the mind of one reader I have met my goal for the day.

***Oh and one more thing!!! When in doubt, out in the real world, if you meet someone with a "difference" in their appearance, count to 10 before you launch into a series of questions or insightful comments a la my waiter. If there's any wondering at all on your part, you can always fall back on the tested and true voice of your Nana, "If you can't say something nice, don't say anything at all." The classics are indeed classic for a reason.

Next post? An interview with a real authority on the world of dance and movement!!

Now. Back to painting my new skirt and vest combo. I am gearing up for Vegas next week and one of my favorite national conferences, "I Teach Kindergarten" where I have two workshops and a book-signing with Crystal Springs Books!!!! Wait till you see my newest ensemble!!! Fashion indeed!

Family (Literacy) and Friends

Blogging backlog, testy technology, foggy memory and attempting to sort things out..... For whatever reason my Picassa program for downloading my photos has not been chronologically correct this spring. Picassa has just randomly put pictures willy & nilly where ever it has thought would be the best way to confuse me. I've encountered this once before and if I'm blogging in real time it hasn't been too nutty. As I think back now, literally a couple of months after the Family Literacy Conference has come & gone, I do believe that these particular pictures are from the day-BEFORE my presentation. (So these pictures took place before those I've posted over the last couple of days..... not that there will be a quiz over any of this. LOL) The only reason that I knew that these photos existed and went searching diligently for them, is because of the last two images in this series above.

Those last two pictures are very near & dear to my heart. They are dear cyber-sisters from BCO (BreastCancer dot Org) who live just across the river in southern Indiana. There are tens of thousands of members at BCO -- unfortunately -- and the longer I remain active there, now offering support, where once I was the recipient of amazing support, you come to feel as though you truly know your cyber friends. But the three of us are significantly even 'closer' as we are three members of "Team January 2010" meaning women all going thru BC surgery in the same month: together. We three were truly on the same trajectory of anticipation and experience and have followed each other's stories very closely as a result.

I don't think she'd mind if I mention that in the two months that it's taken me to get these photos onto my blog, Gina, pictured in khakis in the last two pictures was actually diagnosed with Breast Cancer for a second time and has gone thru yet more surgery & its aftermath. So she and I consider ourselves to be two-time sistahs and have the unique experience of knowing what that second diagnosis feels like. Tall Robin is a musician and she has used my materials in her elementary music room setting. So it was an enormous thrill for me to meet the two of them!!! I am particularly blessed to meet my BCO sisterhood in my travels and these two are truly gems. In the hour we had to visit we all 3 yakked in unison nearly the whole time, just taking breaths in-between for the laughter to roll off into the hallway. Thanks to all my Team January buddies & especially to these two who made a point to track me down.

As I am re-thinking what having this blog is about, who it is for and why I keep adding to it, I periodically do indeed reference my trials with BC and how that fits into the whole picture. Some suggested I keep a whole separate blog about those travails. I knew that I couldn't keep all of that straight. It's all me, polka-dots, laughter, breast cancer, quilting, artwork, BC side effects, singing children, the whole of my ups and downs, all rolled into one, which is after all how my days unfold. Tangled together. One reality impacting the other.

There was just recently a thread (discussion) over at BCO entitled "Did I Make My Treatment Look Too Easy" and the person writing shared that she had been all 'happy-face' and nonchalant with her professional peers & buddies during her treatment and then was surprised that so many were lax in offering her support. The title of that discussion has really had me reflective. I've thought about what a 'dis-service' I may be to my fellow sisters, in that I am out and about and might appear to be traveling the world with big cheesy smiles as though nothing's happened. On one hand the fact is that both of my BC's were detected VERY early and consequently I've never had chemo or any of those ramifications. I certainly refrain from calling it 'cancer-lite' but the fact is that my experience is far from that of many women, whose work is truly impacted by treatment and its aftermath. Then there's the extremely unbelievable oddity that I would have Lymphedema ramifications, that are barely understood by anyone: layperson or professional.

As long as I'm on a ramble I just feel the need to point out that while I am able to appear to 'zip' about in blog pictures, the LE does raise it's ugliness in my stamina and also in what I even schedule to attempt. I have the great good fortune of having a husband who can now do the extreme driving that I had once done under my own power. He's there to lift in and haul out all of my gear and the boxes of books -- there is no way on earth that I could attempt such exploits solo any more. Hurrah for Allen!!! BOOOOHISSSSS for LE!!!!

BC is a strange concoction of initial shock, multitudes of pamphlets, numerous doctor appointments, marketing over-hype, personal experience, some individual yet genuine limitations, follow up dread, celebrity spotlight, and the stark reality that science is not yet providing all the answers. I write this post on the heels of learning that science failed our dearest "Konakat" a too young Canadian, who by all rights should have been a stand-up comediane. She was brilliant and funny, making hilarious descriptions of her decline as she spoke of chocolate in memorable ways. She was too amazing for you to have any sense in a quick mention here, but she will be utterly & forever missed. Her voice was so completely unique, witty and informed, upbeat even in the face of the unthinkable and now it is forever and all-too-soon silent.

Every now and then I feel the need to veer from the polka dots and share just a tad bit of why I am so THRILLED to continue my work, humbled/hobbled as I am at times. Despite all of the pink ribbons -- from dog food labels (truly THE most bizarre use of a pink ribbon ever IMHO) to license plates and everywhere in between.... we are still losing far too many brilliant women, far too early. This being my 1312th post I felt the need to get a little off my chest.... where there's not a whole lot of much anyhow. End of rant.

I promise a quick return to the beach tomorrow, in time for Father's Day, as I stumbled into those pictures in the cache of out-of-order photos. We will return to sunshine and lollipops, which is where I prefer to spend the majority of my time.

AMAZING Anaheim!!

Dateline. Anaheim CA. 2010 NAEYC. Sunshine. Record-setting-high temperatures for November. Safe arrival. Just a hop, skip and a jump across the country to land in the glowing, celebration setting of all things fantasy-like. Palm trees basking at the airport. Turn left at the main entrance to Disneyland and go a few more blocks down to the Convention Center -- where dreams really do come true. This is my seventh NAEYC in a row to make a presentation. My very first time, seven years ago in the rotation, was also here in Anaheim. A lot can happen in a mere seven years.

The first time I flew out to Anaheim, I came for a heartbeat...... without a hotel reservation. YuLing Yee from Akron, had promised that I could bunk in with her (unofficially.) Her flight got incredibly delayed and while I was awaiting her arrival, just biding my time in the lobby -- Mary Wonderlick from Chicago, waltzed through and gave me the key to her room. Seriously. Thousands of people milling about and Mary offered me a spot in her life raft.

This return to Anaheim felt triumphant on so many levels. I had my own room reservation!!!! Big triumph number one, right at the top of the list. [Thank you Zaner-Bloser!!] In the time since I first presented at NAEYC I have released THREE picture books as author/illustrator and I've released three more albums of recordings as well. AND I have a new project looming on the horizon with Redleaf Press arriving to the world early 2011! That's not to mention that both daughters have gotten married, we've added 6 grand-children to our tribe, moved, built a little place in Florida, been diagnosed with Breast Cancer -- TWICE -- had mongo complications from the treatment to the BC, resulting in Lymphodema/compression garmentS et.al..... well you get the picture. A lot has happened since I was last in Anaheim. So arriving back to the blue skies and palms was a celebration, in and of itself!!! Yippeee-ki-o!!!

'Restorative' Yoga

Today's Friday. You know what that means!! Back to the yoga mat. I forgot to label the pictures before posting them, but I think you can follow the photos to get the idea. The first thing is to have a yoga strap with a buckle. Two 'yoga-blankets' make for a gorgously supported pose. It is officially known as: Reclining Bound Angle Pose, or for the absolutely accurate: Supta Baddha Konasana. This is SERIOUSLY restorative...... as in truly & fully & completely restorative, to the very bottom of the soles of my happy feet, I feel restored after even just a few minutes. Remember: deep breathing, matching the inhale to the exhale. Go ahead, restore yourself!!

LE Yoga, Exercise #2

Here we are with some floor work. Stretching shoulder up and then down to the floor to "set it" into position. Always with the deep breathing.... matching breath in -- to breath out.