Cancer & the Blame Game

One of the lesser known facts about life in Texas:  the yellow haze.
          Every spring, for about a week, the pollen descends.  It  covers cars like a thick dusting of snow. You track it across the kitchen floor, the cat drags it in, you wash it from the window screens and wash it off those nice new black pants. And if you suffer from allergies?  Kiss your usual face farewell.  I'd take a photo of what my eyes look like right now but I'd hate to make you spit out your coffee.
          I was ruminating (yes, I've been known to ruminate, fulminate, and ponder about cancer related issues DAILY) about an emerging oddity in cancer culture a friend told me about Sunday. It's a new version of the blame game.
          The blame game -- especially as far as women are concerned - has been with us ever since Eve. Its range stretches from "what did you do to deserve that?" to "what did you do to deserve THAT?"
           Surely, this line of reasoning goes, you did something to get raped, abandoned, fired, or now, diagnosed with cancer.

           Here's how it works.
           Bad character, "You seem sorta down."
           Good character, "I am.  The coolest woman I know is dying of esophageal cancer. I'm flying out to see her this weekend - probably for the last time."
           Pause.  Bad character (how could I make this up?) "Did she smoke?"
           Good character, looks at the other, runs character analytics, measures the metrics of the friendship. "No, and you can blow it out yours."
        
           Another version:
           Good character.  "But I can't believe it.  She's the healthiest person I know, eats organic food,  exercises.  All that. And this is her third bout with melanoma."
           Bad character.  "Does she lay out?"
           Again. Why would I make this up?

           At best these exchanges are the grist for Miss Manners or the king of manners, Christopher Hichens.
           At worst these cases bode poorly on the capacity of one person to have empathy for another, for the capacity to share, to be human.
           When people use prevention messages to distance themselves from experiencing the pain of another's cancer, then we have more work to do than raise awareness.  Sometimes too much information is just that:  too much. Let's continue to deconstruct the fear so that people aren't so afraid of being diagnosed with cancer that they can't hear what another person is saying.
           After my friend told me about this I took the dog for a long walk then sat down on the deck.  I put my hands down on the armchair without thinking.  They were covered with pollen.  It's like these inhuman reactions to real human suffering.  I so wanted to wash it all off.

Stay real,
Jody 

Disaster Drill

Two words:  flash drive.
           Two more thoughts.  Buy one. Then compile your medical history, current medications and other pertinent medical information into a document and transfer it to the drive.  Zip that puppy into your wallet and leave it there. You can also store the document in Dropbox or another web-based program like Backupify just in case (in emergencies, sometimes we lose our wallets).
           Better yet:  Park all of your medical information on a mobile app (more below) so your phone becomes your personal medical library.
           You've just taken a big step forward in disaster preparedness.
           None of us can “prepare” ourselves for a disaster on the scale of the Japanese earthquake and tsunami of March 11 and the subsequent nuclear reactor failure. This would equate to imagining your current life – the streets where you walk the dog, all the neighborhoods,  the closest grocery and dry cleaners, the closest hospital and shopping center – obliterated and splintered into pieces for miles.  All of it washed away and covered in mud. Even journalists, those soldiers of information gathering in dire circumstances, have been shaken while covering this disaster.    
           Some of my first thoughts following news of the earthquake, before I'd even seen images or understood its magnitude, concerned cancer patients. What would you do, I thought, if you were in the middle of chemotherapy? Or recovering from a bone marrow transplant BMT? The week the earthquake hit I'd been visiting with Ann Gregory and her husband, Chris. They are BMT veterans. As she was about to undergo her second bone marrow transplant, Hurricane IKE hit the gulf coast. Her hospitalization at MD Anderson went on without a hitch. But the apartment where Chris was staying had a sewage backup as well as power failure. For a week he lived in their car in the MD Anderson parking garage.

Lovell A. Jones, Ph.D.

            Following Hurricane IKE, when thousands of Houston area residents were without power for close to a month,  MD Anderson operated successfully for significant time on generators before full power was restored.  Lovell A. Jones, Ph.D., MDA's director of the Center for Research on Minority Health, also serves as Principal Investigator of the  Secure Gulf Coast Consortium, seven academic and health institutions that are working together to improve disaster readiness in vulnerable populations from Texas to Florida. 
           He says the best thing any of us can do is to have all of our medical information on a flash drive. "Until the electronic medical record becomes a reality, the best thing any cancer patient can do to guarantee continuity of care is have all their information on a flash drive.  We've also found that we need to tell people to dedicate that drive to strictly to health info.  Nothing else."
           The SECURE project will be working with elementary school children on disaster preparedness in order to increase everyone's knowledge of preparedness, especially their parents.  What consortium investigators at Meharry Medical College have found already is that stress during events such as Hurricanes Karina, Rita and Ike seem to increase infant mortality following such storms.
           There are steps all of us can take to keep us from becoming a statistic before our time.  I've compiled some info below.  I hope you find it helpful.  For those in states bordering the gulf coast, I've also included the RED CROSS link on evacuation routes.  
           And by all means,  if you have helpful links or mobile apps to share please let me know and I'll add them to the list.  


Stay well,
Jody 

*Mobile Apps: 
    1) SOS4Life  Cool app (IPhone & coming to Blackberry) that holds your medical history AND  translates it into seven different languages.  
    2) IChemo Diary Merck. (Free download from Apple) Program to monitor your chemotherapy treatment and side affects.  
    3) In Case of Emergency:  (Free Blackberry download): to store emergency contact info.

*Ways to Prepare for a Natural Disaster -- Helpful, consise info./        http://www.breastcancer.org/tips/emergencies.jsp 



* "Coping with Cancer After a Natural Disaster"  -- Excellent summary from American Cancer Society 


* "Emergency Preparedness & Response" Center for Disease Control 


*Red Cross Shelters


On Twitter #FF @CDCEmergency @CrisisSocialMedia (#smem)

"Cover Your Butt. Schedule Your CRC Screening"

If you ask Roger Rojas the choice is simple. "I'm just hoping someone will listen," he wrote to me.
          He's talking about colorectal cancer screening.  A tweet he wrote this morning caught my eye: 
          "At work, not feeling well. Tried to convince co-workers to get screened for colorectal cancer, maybe they can avoid this pain and discomfort."  
         The father of three had few of the usual symptom associated with colo-rectal cancer and at 34, was not a candidate for the screening.  Yet his hope is that those of us who CAN be screened take the opportunity to do so.
         My two cents worth?  I scheduled my first colonoscopy at MD Anderson when I was 46 since my breast cancer diagnosis and family history raised my risk to some degree.  Let me tell you something.  This is nothing.  A pap smear feels more invasive than a colonoscopy, if that helps you at all.  And the prep?  I think it's designed for people who weigh 250 pounds and eat hamburgers and french fries.  I rarely eat red meat, enjoy a lot of fruit and vegetables and the prep wasn't nearly as bad as I expected.
          If you want to understand more about the procedure colon cancer advocate and CBS anchor Katie Couric talks with Harry Smith before his procedure at: http://bit.ly/bO3m8E
          For more terrific information go to the ColoRectal Cancer Coalition:  http://fightcolorectalcancer.org/
          Nip a cancer in the bud (butt)... so to speak.  Like breast cancer, if caught early colon cancer is easily treated.  The physician can remove the cancer by scope before more invasive surgery is necessary, and before the cancer has spread.  Do what you can.


Livestrong,
Jody


Photo courtesy of C3: Colorectal Cancer Coalition.

Fearless Friends

Last Sunday the Discovery Channel launched a seven-part series, "The Frozen Planet," an epic documentary of the earth's polar regions and the very real threat posed by global warming.

         
I could spend the rest of my life watching television like this, or studying animals in general and dolphins in particular.

Dolphins stay in small units, or pods, and communicate via an elaborate system of whistles, clicks, and squeaks.  We all know about the squeaks from Flipper and bad Disney films. But their group behavior is something that can constantly teach us.

Instead of casting a weaker or ill member aside, as many other animals do, a pod of dolphins will often surround an ill dolphin and work as a team to bring her up to the surface for air to prevent her from drowning.  In other cases, bottlenose dolphins have been seen biting and pulling through nets to save a captured companion or staying close to a female dolphin in labor.

While these "empathy-based" behaviors are difficult not to anthropomorphize, I'm sure that's exactly what led a friend to leave us with a beautiful figurine of a dolphin leaping from the ocean's surface when she and her husband moved from our community to Florida several years ago. The dolphin was her gift to us.

The tightly knit pod, she said, reminded her of the breast cancer support group where we all met. And that when one of our members - first Theresa, then Judy - sickened and ultimately died - we all pulled together, and brought our ill friends to the surface for air, so they might breathe easier, if only for a moment. We stayed with them, by them, around them, until there was nothing else we could do. Then water, life-giving and always mysterious, flowed in to fill the space.

In Loving Memory --
Judy Halinan, Denell Hilgendorf, Elizabeth McCready, Rachel Cheetham Moro, Susan Niebur, Monica Phillips, Anne Robinson, Theresa Walleye.

The term "Fearless Friends," was coined by Rachel Cheetham Moro in a tweet chat on January 23, 2010.  She died on February 6, 2012.  We will always miss her. 

Your Cancer Risk: Tune in Tues., 3/23

The ever-changing headlines on cancer screening guidelines can really get to you, especially if  you "did everything right" and cancer still moved in and set up occupancy.
        
Last fall the fury started with revised guidelines for mammography screening.  Then last month another shout-out erupted over PSA screening guidelines for men.  I'll leave that for DH and my brother (prostate cancer survivor) to discuss with their physicians for now.


As outlined last week in CancerWise, a publication of MD Anderson Cancer Center, there are four types of risk factors:


1) Behavioral.  This obviously, is one of the factors we can control and are known by survivors:  smoking, alcohol, exercise, diet.  Is there anything you need to change?  If so, let's do it!


2) Environmental.  Do you work in the sun?  Are you exposed to any pesticides?  This is an area we need to learn more about.  The obvious "asbestos factor" is not an issue for most of us, but what about all the additives in food, clothing furniture, etc....and all those fragrance sprays/candles/mists?   You'd think we smell like pigs with all the fragrance products out there.  I say: get rid of most, if not all of them.


3) Biological.  We can't do anything about this. Boys will be boys and girls will be girls.  We get breast, cervical, uterine, endometrial, ovarian cancers; men get prostate cancer.  Cancer risk increases with age; and skin color. For example, light skinned people like DH (northern European) are at risk for skin cancer and African American people are not.


4) Genetic.  Here comes the Catch-22 and a huge conundrum.  If only 5-10% of ALL cancers are inherited, then what else will we need to learn about our genetic make-up to help prevent cancer?  Obviously some mutation has occurred that is outside these other factors.


Let's find out more. On Tuesday, March 23, Dr. Therese Bevers of MD Anderson's Cancer Prevention Center will be on Twitter beginning at 1 pm. to answer your questions.  All you need to do is ask your question with the hashtag #CancerRisk included in your Tweet.  I'll monitor the conversation, so if you can't attend and have a question, let me know, and will make sure it is submitted!  You may have questions for yourself, about your children or friends.  This is a terrific opportunity for us to find out all we can.


Hope you can join me! Have the best weekend possible:)
Jody

Survivorship Guidelines. For real.

Late last week the National Comprehensive Cancer Network (NCCN), a nonprofit alliance of 21 comprehensive cancer centers, announced its first ever set of clinical practice guidelines for survivorship care.
     There are some 13.7 million cancer survivors in the United States alone. Of those, 2.9 million are breast cancer survivors. All of us have found our way through those first difficult months and years following diagnosis. Treatment itself was one thing. Trying to adjust to life after cancer was another.
      But by any measure the guidelines are good news for any man or woman in treatment now. The 100-page report covers eight distinct areas:

• anxiety and depression
• cognitive function
• exercise 
• fatigue
• immunizations and infections
• pain
• sexual function 
• sleep disorders. 

           Standards for evidence-based survivorship care are only being developed now. The first conference on survivorship science as an entity in and of itself did not take place until 2003. In 2004, the CDC and Livestrong published "A National Cancer Action Plan for Cancer Survivorship," which included the simple, yet powerful recommendation to establish an infrastructure for a comprehensive database on cancer survivorship. I don't know if that has transpired.  While that sounds smart to me, making smart things happen is not one of the hallmarks of our framented health care system.  
           Then as most of you know, in 2005 the Institute of Medicine published its landmark consensus report Lost in Transition, which made the case for survivorship care. Six years later Livestrong held a collaborative symposium of stakeholders, health care professionals and advocates to begin a consenus building project to articulate the "essential" elements in surivorship care. 
            A later IOM report, "From Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs," recommended that psychosocial screening be part of quality cancer care.  This is well covered in NCCN guidlines but why other concepts from Lost in Transition and Elements didn't become part of NCCN's report aren't clear, even though both reports are mentioned. NCCN surivorship care guidlines, for example, don't even support the need for a survivorhip care plan or treatment summary. While we all understand that there's no economic incentive in place for this let's get serious. A one page print out is not rocket science. Both "Lost" and "Elements" stress the need for education - of providers and patients - and coordination of care. NCCN's guidelines don't venture that far.
            NCCN's guidelines are directed at professionals. How this material will make its way from the nation's 21 comprehensive cancer centers to the community setting, where the majority of women are seen, is not explained. Color me skeptical but I see a packet of information stacked on an oncologist's already stacked desk. Neither were there any outside patient advocates or organizations on the committees as listed in the report. This makes no sense to me. You'd think that patient advocacy networks would be tapped for their assistance and guidance in moving this material to where it needs to be. Let patients know and let them help. No one is more invested in assuring the provision of good survivorship care than we are. 

          A few other take-aways to the report:

• at least 50% of (all) survivors suffer from some late effect of cancer treatment. The most common problems seen are pain, depression and fatigue.
• anxiety and depression affect up to 29 percent of all survivors; and some 19% meet the diagnostic criteria for post-traumatic stress syndrome.
• the increasing trend toward more treatment, combined chemo, radiation, hormone therapy and surgery can result in more late effects. One example was the study from last week on increased of heart disease for women receiving radiation therapy.

          Believe me, I am far from done with this topic. Sometimes It seems the more we do to treat - not cure - cancer - the more potential for problems there are down the road.  We can't go back and undo treatment we selected, decisions we made when faced with a difficult, confounding disease. I do believe we can do a better job with survivorship though, and these guidelines are one place to start.
          I hope you'll take a look at the report. You will need to establish an account but you can access the material by registering with your email address here:
       

#   #   #

Interesting note:  I just saw a news release from NCCN announcing that two additional cancer centers have been added to their network.  They are UC San Diego Moores Cancer Ceneter and University of Colorado Cancer Center.

About Denell

These days my friend Heidi, and her sister Rindala, and her sisters friends, and their two brothers, the families of their husbands and their wives, their mother, cousins, adopted brothers and sisters, classmates, co-workers, neighbors, students, all the saints who pray and a circle of influence that wraps the globe are in mourning.

The unexpected happened. The unimaginable. The eldest sister, Denell, died February 11, 2009 of malignant melanoma. She was 47. Her diagnosis had occurred eight months earlier.

Over a twenty-seven year career Denell taught in Lebanon, Cyprus, Jordan, Japan, Kuwait and before her illness, in Oman, where she taught fifth and sixth graders at The American National School at Muscat. She was a teacher, a leader, a friend, a daughter, the woman at the party you'd want to hear laugh.

As news of her death spread friends and former students immediately formed a group and posted photos on Facebook. An international community signed on and started writing. She loved chocolate, candles, lemonade, good humor. She was a fan of close-up face shots like the one above, with her sister Heidi (left) and Rin (in the middle). Two years ago I was in France with Heidi and she set up the same shot.

We all ache when our friends do. Sometimes we think we know what they are going through. Sometimes we don't. Stages of grief are a myth. It hurts like hell and then suddenly, it doesn't hurt quite as much.

What we do know is this: that you loved her. You will always miss her. And if you ever want to talk, we drop everything for that moment, just to sit, and listen.

Oasis

Happy camper Tracy Lukk taking a hiking break 3/10/11.
Photos by Mike Lukk, The Woodlands, TX.

"If you wish to experience peace, provide peace for another." ~Dalai Lama

For the past ten days I've been off the grid, cycling and hiking through the high desert country of southwest Texas with DH and four "ultra-milers' from The Woodlands. 

        While I was gone, nothing changed...but everything did. Life changed irrevocably for the country of Japan and the millions worldwide who life in earthquake zones.  None of us can read about an event of that magnitude without stopping in our tracks, taking stock and taking some action, from saying a prayer to making a donation (sources below). 

         At the moment the aftershocks were still resounding and the tsunami was yet to come I had found an oasis, mentally, physically and spiritually. We'd been hiking in the Chisos Mountains that day- just one section of Big Bend National Park - and had already climbed 2,000 feet to the plateau you see here where we stopped for lunch.  

        

 

The vista was breathtaking.

         

The climb had been rugged, the path rocky.  Mid-way, after hitting another section of switchbacks, my left hip started arguing loudly with me.  Go back!  Then my feet added in their two cents' worth.  Girl, this is your vacation!  Go back to bed!  But like the people of Japan, I had no idea what would come in the next moment.

And there she was right around the corner, without fear and largely disinterested in my aching feet and hips. Completely disinterested, in fact.

She stared.  We stared back.  In those warmed shared seconds I felt the extraordinary miracle of passing time.

Without moments of serenity -- the blessing of an unexpected oasis -- it's far too easy to lose your bearings.  Part of living with cancer or any chronic illness is training your mind to "replay" the unexpected oasis so it can feed you through the inevitable difficult days.  I'll now remember the quality of the air that morning, its clarity, and how the sun felt, almost directly overhead, as we stood motionless. 

Because the true oasis, as this was, is a rare event, like catching the eye of a hummingbird or being there, at the second the meteor makes it brilliant path in the night sky.  

I hope you have an oasis, too, that feeds your soul.

Hugs,

Jody

Livestrong CEO: Social Media Will Change Health Care Forever

I was fortunate enough to witness the inaugural conference of #SXSH yesterday in Austin and the incredible discussions on social media best practices and strategies for the health care industry.  The event, the brainchild of four twitterati rock stars, was real evidence of the power of social media for the public good.
          It was wonderful to  meet many people I admire on Twitter and discover how much online dialog accerlates real-life relationships.  And the event? No attitudes. No hierarachy.  No silos. Just possibility and the power of collaboration.
          In fact, this was probably the first conference I've ever attended where I actually wanted  to attend the networking event.
          Key words:  Authentic.  Transparent.  Real-time.  Collaboration.  Accessible.  Relate.  Innovate.  Champion.  Create!
          Livestrong CEO Doug Ulman opened the day with an inspiring talk about the role of social media in transforming health care. He compared the state of social media at the time of his own cancer diagnosis (remember Eudora?) and how it is now where on-line communities can help ...."patients make better informed decisions in real time."
       Doug, who knocked me out (I'm laughing at talking at once above) with his great warmth and sincerity,  gives three reasons why social media will change health care:

• It's free and accessible
• Information: available in 'real-time' (not something you find out six months AFTER you've selected a treatment, for example)
• Patient - centered and driven.

       "Social Media will change health care forever, " Ulman said.  "At the end of the day, it's people coming together and interacting that will change the paradigm."
       
       Ulman was just the beginning.  Additional highlights included:

• Jenn Texada, who discussed the both the rewards and challenges of monitoring social media activity for MD Anderson, the national cancer facility in Houston that serves more than 100,000 patients a year.  
• Greg Matthews, changes the game for Humana with an "innnotation team" that developed a pilot program of gaming for kids that monitored their activity levels with a pedometer.  Result:  a 35% increase in activity level.
• Small group discussions with Ed Bennett, University of Maryland Systems, and Dr. Bryan Vartabedian, http://www.33charts.com/
• Two extraordinary afternoon speakers, from Fabio Gratton, co-founder and chief innovation officer of Ignite Health.  His case study on #FDAsm: great example of technology solving problem of too much information through data aggregation.  
• Last address we were able to hear was the genesis of n the Pillbox system for rapid identification of pills http://pillbox.nlm.nih.gov /via @doctorblogs by David Hale (@lostonroute66).  Hard to grasp but until he developed this webpage a visual identification system (online) did not exist.  Talk about an incredible public service!!

        This was just a fast overview of some of the conference highlights.  If you'd like more in-depth reading, cut and paste #SXSH into your Twitter search feature and every tagged posts and links will appear.

        More to come.  Happy weekend all!

        Jody

Photos courtesy of Barbara Peyton, Barbara Peyton and Associates, Montgomery, Texas.   

Academy Awards Forget Farrah? Survivors Don't

American icon and Emmy-award winning actress Farah Fawcett was notably absent in the traditional memorial included each year as part of the annual Academy Awards ceremony, which aired last Sunday.   Roger  Ebert, writing on Twitter, quickly noted,  "No Farrah Fawcett in the memorial tribute? Major fail."

Major fail is right.  From a purely historical standpoint, based on the length or her career and her social impact she should have been there, along with Bea Arthur.

But perhaps the omission it as it should be.  Like icons before her (Marilyn Monroe comes to mind) Ms. Fawcett did not seem like part of Hollywood, or even of Hollywood.  In both cases, separating the woman from the image became as intriguing as the image itself.

In the real world I think Ms. Fawcett was an incredible artist who unintentionally saved her best public work until last.

She gave the most extraordinary gift of her intelligence, grace and spirit in "Farrah's Story," the no-holes-barred documentary that chronicled her struggle with the cancer that prematurely ended her life last summer.  Both she and Michael Jackson died on the same day.

In 2006 Ms. Fawcett was diagnosed with anal cancer, one of those cancers people don't talk about very much, if at all.  In the last 30 years its incidence has risen by 78% in women, according to an article in US News & World Report.   While only one in 640 women will be diagnosed with anal cancer over the course of their lifetime, not even half of anal cancers are detected early, when they are most easily treated.

The fact that this engaging woman, who fought on many fronts to retain her privacy, chose to let us in on this last chapter of her life certainly says more than I can. "Farrah's Story" shows us a rare courage and also the unflinching nature of enduring friendship and love. Alana Stewart is by her side filming through treatments, illness, laughter and tears.  If you've had cancer, you know what these moments feel like.  Of all the moments shared, one of my favorite is one all of us can identify with:  the two friends cooking dinner and laughter in the kitchen.

When the Academy of Motion Pictures Arts and Sciences decided "....that we can't include everybody" in their "memoriam" they rendered the rest of the segment meaningless.  

So to Ms. Fawcett?  What a life you lived.  Thank you.

Zeebrasem met krokante groentjes en honing-limoensausje

Dit is een zeer lekker gerechtje. Zeebrasem is één van mijn lievelingsvissen. Het is een zeer magere vis die slechts uit weinig vet bestaat en voor ongeveer 17% uit eiwitten. De vis heeft een zeer vast en smeuïge visvlees. Ik serveer dit gerechtje met wilde rijst en heel veel groenten. 

Serveer met wilde rijst en werk af door op de vis en de groentjes een beetje fleur de sel te strooien. 

Ingrediënten voor 2 personen: 

• 2 el ahornsiroop of honing 
• sap van 2 limoenen 
• 2 visfilets 
• olijfolie 
• 4 lente-uitjes, fijngesnipperd
• gedroogde of verse tijmblaadjes 
• 1/2 pakje sluimererwten 
• 1/2 pakje suikererwten
• 250 g jonge spinazieblaadjes
• 1 venkel 
• 1 el sojasaus
• Versgemalen zwarte peper
• Fleur de sel

Bereiding: 

• Voeg de fijngesnipperde lente-uitjes, sluimererwten, suikererwten en venkel in een wokpan en stoof alles krokant in een beetje olijfolie. Voeg er het limoensap en de honing of ahornsiroop aan toe. Laat even sudderen. Strooi er wat tijm over en de laatste minuten de spinazie en zet het deksel op de pan zodat de spinazie kan slenken. Kruid het gerecht met peper en voeg er wat sojasaus aan toe tot je de smaak goed vind. 
• Kruid de vis met peper, beetje limoen of citroensap en besprenkel met olijfolie. Steek hem 12 minuutjes in een voorverwarmde oven. 
• Serveer met de wilde rijst en de krokante groentjes. Als het gerecht op tafel slaat, werk dan af met een beetje fleur de sel. 

Hier heb ik de wilde rijst onder de groentjes gemengd. 

Recovering Your Arm After BC Surgery

On my closet wall there are a series of pencil and Sharpie lines with dates right next to them.

The first mark one was about shoulder height. That's all the higher I could raise my right arm following a mastectomy and lymph node dissection after my first four rounds of chemotherapy. The marks then climb in 1/2" to 1" increments until I became frustrated and stopped monitoring. Chemo started again and took up most of my attention. I would work on my arm many times over the next two years.  I wish I'd known a little more going in.

When we're first diagnosed with breast cancer, making the connections between cancer, treatment and all the related physical ramifications is a complete information overload.  Books.  Articles.  Web pages. Unsolicited Advice.  After most people recovered the shock of hearing about my diagnosis the next, most frequently-asked  question was, "are you going to lose your hair?"  


The fact is that for any cancer patient -- breast or otherwise --  there's a much larger dance going on than coping with hair loss. Hair eventually DOES grow back, and there are virtual communities of BC survivors and programs to help you manage your hairless appearance during chemo.  All of us are are grateful for people like Laurie Andreoni (http://www.titillatingturbans.com) and  "Look Good, Feel Better" http://www.lookgoodfeelbetter.org/ --a national program that helps women (AND men) look their best during treatment.


Recovering your arm is another story, especially following extensive lymph node dissection and radiation, as happened in my case.  Oddly enough, it wasn't until I asked my oncologist/radiologist that a round of lymphadema and physical therapy was prescribed to help get my arm working normally again.  I believe physical therapy should be standard treatment extensive work in the axilla -- underarm area -- but this is my take and part of my advocacy.  For you, today I'd like to pass on some resources I've come across that can help you recover your arm in a gentle, gradual way.


The Pink Ribbon Program
I've spoken with  Doreen Puglisi, M.S.,  an incredible survivor, college instructor and  exercise physiologist who developed a Pilates-based rehabilitation for women recovering from breast cancer surgery. Doreen   transformed both her professional -- then personal -- experience with cancer into a successful phased-program.    In just six years, the nonprofit organization she established has trained and certified more than 400 Pink Ribbon Program instructors in the United States, Australia and Europe to help women recover their mobility, strength, and range of motion following breast cancer surgery.   


The Pink Ribbon Program comes with an excellent guide book with a phased sequence of exercises that help you rebuild your strength and mobility.  


If I'd known about Doreen and the Pink Ribbon Program, I wouldn't have shoved an exercise video in the VCR and started stomping around with my ten pound weights (I know, what was I thinking?)  As it turned out I did work with a trainer who developed some exercises with flexible bands and very light weights that helped.  The Pink Ribbon Program would have been much better.


Two other programs I found listed on SHAPE magazine include, "Beat Cancer Boot Camp: Navy Seal-inspired fitness workouts: a two-month program inspired by the renowned Navy seal fitness program. http://www.beatcancerbootcamp.com/about.htm


The other is Livestrong at the YMCA, a free program that pairs a survivor with a fitness coach and instructors in a custom designed program that include a mix of aerobics, yoga, strength training, and swimming.  The program is available in  20 cities.  http://www.livestrong.org/site/c.khLXK1PxHmF/b.5119497/


Please let me know how your physical recovery went (or is going) for you.  I didn't receive helpful information at all from the Breast Medical Center at MD Anderson, other than an old photocopied list of "things to avoid."  I can only hope they are doing better in this regard now.  But even if they aren't -- we CAN.  


Take care,
Jody

Curry van groene groenten en geitenkaas

Ik ben dol op geitenkaas, vooral de meer gerijpte en dus drogere geitenkaas vind ik super lekker. Ik koop ze meestal in het 'Mekka van de kaas' in Gent, daar heb je super veel soorten geitenkaas. 

Ingrediënten voor 2 personen:

• 1 grote sjalot, fijngesnipperd
• 1 teentje look, geplet en fijngesneden
• 1/2 courgette, in kleine blokjes
• 1/2 venkel, in kleine stukjes
• 1/4 pakje sluimererwten, in 2 of 3 gesneden
• 100 g groene boontjes, in 3 gesneden
• 1 broccoli, in kleine roosjes
• 100 g erwten
• komijnzaadjes
• kerriepoeder
• paprikapoeder
• kurkumapoeder
• cayennepeper
• 1 takje tijm
• 2 blaadjes laurier
• 2 flinke koffielepels groene currypasta
• Versgemalen zwarte peper
• Zout of vissaus
• 1 l water + 1groentebouillonblokje

Bereiding:

• Was alle groenten. Verwarm een scheutje olijfolie in een stoofpot en bak de ui en de look even aan. Voeg enkele komijnzaadjes toe en laat ze even meebakken. 
• Snij alle groenten in stukjes. Voeg eerst de hardste groenten toe. Ik ben begonnen met de broccoliroosjes, de stukjes venkel, de sluimererwten, de boontjes en dan de stukjes courgette. Roer af en toe om en voeg indien nodig een klein scheutje water toe zodat de groenten niet aanbakken. Ik voeg de groenten één voor één toe, terwijl ik de ene soort in de pot doen, begin ik met het snijden van de andere. Zo krijgen de groenten de tijd om samen gaar te worden. 
• Voeg dan wat paprika-, kerrie- en kurkumapoeder toe en laat nog even meebakken. Doe het takje tijm en de blaadjes laurier er ook bij. 
• Voeg nu de groentebouillon toe en laat het stoofpotje 20 minuutjes sudderen. Voeg er ondertussen ook 2 koffielepels currypasta toe. 
• Proef en kruid eventueel nog met peper & zout of andere kruiden naar smaak. 
• Serveer de curry in diepe borden en brokkel de geitenkaas erover.  Werk eventueel nog af met wat schilfers parmezaan. 

Smakelijk. 

Aubergineschotel met tomaat & feta

Gerechtje met aubergine en feta. De geroosterde paprika zorgt voor een zoete smaak in het gerechtje. Je kan het serveren als hoofdgerecht of als bijgerecht met een stukje vlees. 

Ingrediënten voor 2 personen als bijgerecht en voor 1 persoon als hoofdgerecht:

• 1 rode paprika
• 3 tomaten, ontpit & ontveld
• 1 aubergine
• 1/2 courgette
• 1 rode ui
• 1 teentje look
• olijfolie
• zeezout
• versgemalen zwarte peper
• 2 koffielepels paprikapoeder
• 100 g feta
• 3 el fijngehakte bladpeterselie

Bereiding:

• Verwarm de oven voor op 200°C. Rooster de paprika in de hete oven tot het vel blaren vormt. Haal hem uit de oven en laat afkoelen in een plasticzak. Laat de paprika een 10tal minuten staan in de zak en dan kan je gemakkelijk het vel loskrijgen. Snij hem in stukjes. 
• Ontpit en ontvel de tomaten door ze eerst even onder te dompelen in heet water. Snij ze dan in blokjes. 
• Was de aubergine en de courgette. Snij het vruchtvlees in stukjes. Strooi wat grof zeezout over de courgette en aubergine en laat even trekken, zodat het vocht er wat uit kan. Dep ze dan af met keukenrol. 
• Pel de ui en de look en hak ze fijn. 
• Bak de ui en de look aan in een hete wokpan of koekenpan met olijfolie. Voeg na enkele minuten de stukjes aubergine toe en bak al roerend aan. Voeg na enkele minuten ook de courgette toe aan de pan. Kruid het groentemengsel met zout, peper en paprikapoeder. 
• Voeg tenslotte de reepjes paprika en stukjes tomaat bij het groentemengsel en stoof alles even mee. Meng dan de bladpeterselie erdoor en breng eventueel nog wat op smaak met zout & peper. Brokkel er op het laatste stukjes feta over en serveer. 

Lekker met ciabatta. 

Prophylactic Mastectomy? Study Shows Who Will Benefit

Do you remember your first bra?  I remember wanting one, certainly, then walking up a large wooden staircase with my Mother to the second floor of Herman's department store in Marshalltown, Iowa.  Herman's was on Main Street, naturally, and just a few steps from the courthouse, which stood deep in enormous, sheltering elms that were a hundred something years old at the time.

Once upstairs it was like we were on a stealth mission.  My mother somehow signaled that mysterious Morse code mother speak to the sales clerk, who honest to God, had glasses on a chain and a cardigan sweater. I was to follow her, and she led us  over to counter and removed two "training bras" (wrapped neatly in tissue paper) from a deep drawer packed with all kinds of equally wondrous garments.

Training?  My breasts didn't need training God knows, they needed saving.  Time will tell for sure but I believe that some protection from breast cancer can be put in place long before that first bra (yes, mine had a small pink bow) is worn for the first time.  Exercise, the real old fashioned kind, the kind the guys do, is an essential component, as is a diet leaning far from the meat and potatoes of my Welsh/Irish parents and much closer to the mostly-vegetable-with-meat-once in a while that I enjoy now.  Anything that smacks of hormones is to be avoided at all costs. I'm fairly certain my mother was given DES for miscarriage before I was born, a fairly common practice in the l950's.  The CDC sites a study which points a significantly increased risk (of breast cancer) in DES daughters over age 40, but emphasizes that further research is needed to confirm this link.  It's something I follow.

Between that first bra and l998 when my cancer was diagnosed,  treatment for breast cancer evolved.  Taxol. Tamoxifen.  Taxotere.  Herceptin.  Biophosphonates.  Breast conserving surgery.  In l998 the thought of having both breasts removed to avoid the possibility of another cancer in the unaffected breast seemed unnecessary to me.

This is how I viewed treatment 1) surgery to get rid of the cancer 2) chemo to squash any nasty cells that decided to take up residence in my liver, brain, stomach or spine 3) radiation to prevent recurrence on the affected side and 4) tamoxifen to lower my estrogen level and trick any remaining hormone seeking cancer cells to consider themselves fed.  

My type of breast cancer, an invasive lobular cancer, has a 20% chance of occurring in the other breast.  Had.  The way I looked at it; there was also an 80% chance that it wouldn't, and perhaps, with tamoxifen, even less.  None of the physicians I talked with at the time -- including oncologists and a plastic surgeon, even mentioned a prophylactic mastectomy, yet another woman from my husband's office who was diagnosed within the same month with invasive lobular breast cancer did opt for a double mastectomy.

Between l998 and 2003: there was a 150% increase in CPM (contralateral prophylactic mastectomy) in the U.S., according to oncologist Isabelle Bedrosian, M.D, from The University of Texas M.D. Anderson Cancer Center. Now oncologists will be able to provide women trying to make this difficult decision with results from the first population-based study.

Published in the Journal of the National Cancer Institute last week, researchers used the National Cancer Institute's Surveillance, Epidemiology and End Results (SEER)  registry, which now represents 26 of the U.S. population.  From that group, there were 107, 106 breast cancer patients who underwent mastectomy and 8,902 who of those had the unaffected breast removed as well.

What the researchers found:  "a clear survival benefit" for women under fifty with early stage (Stage I or II) disease that is hormone or ER negative.  

The researchers also found that CPM was not beneficial for women over 60, and that any benefit for younger women with early stage estrogen-receptor positive cancer was still not clear.  This study also excludes the subset of women whose cancer is positive for BRAC mutations.  This is a different subject entirely.

Let's keep working for ways to keep all of us, our sisters, our mothers, our friends, our daughters, free from cancer.  For today, at least, we have another bit of information to keep in our arsenals should this agonizing decision become one we need to consider.

Blessings,
Jody

Please, by all means, read about this study.  Its good to know:
http://www.time.com/time/health/article/0,8599,1968122,00.html