Being Invisible Girls

What would you do if you were seated on a crowded subway and saw a little girl falling asleep standing up?

“I think: someone needs to hold that little girl because she’s sleepy.  And all of a sudden the little girl looks right at me.  So  I hold my hands out and she climbed on my lab and she fell asleep,” Sarah Thebarge remembers.

That one action changed Sarah’s life.  “There are so many people in this world who feel lost, broken and rejected.  And so if I can do anything, even the smallest thing, to make someone not feel that way, I’ll do it,” she says.

Who is Sarah Thebarge?

sarahthebarge640She’s a writer, physician assistant, and graduate of Yale who, at age 27, was diagnosed with breast cancer.  “I was doing laundry and I put all of my white clothes in the wash…  I was just wearing a white t-shirt….All of the sudden if felt like a raindrop had fallen from the ceiling.  And I wondered if something was leaking up there.  I looked up at the ceiling and then down at my shirt and there was blood on my shirt.  I went to the bathroom and lifted up my shirt and sure enough it was bleeding…Only masses cause blood to come out and I knew I had cancer.”

Only about 1000 people are diagnosed with breast cancer before they are 30 and their cancer is often very aggressive.

Sarah’s story turns grim as her diagnosis of ductal carcinoma in situ, which Mayo Clinic says is “the earliest form of breast cancer,” returns as invasive cancer, a year after a bilateral mastectomy. And then it recurs twice:  once ,during chemotherapy.

During this period of time, Sarah’s boyfriend broke off their relationship; she had to drop out of her second masters program (this one at Columbia); a friend died of cancer; and, a truck hit her car. “EVERYTHING went wrong during chemo.”  Sarah got sepsis and nearly died.

A small town girl from a small town near Lancaster, Pennsylvania, Sarah had no family history of cancer.  Her father is a fundamentalist evangelical Baptist minister and her mother a homemaker.  “I …had to wear dresses to my ankles, couldn’t cut my hair, no woman in my family had ever gone to college.”

She describes her growing up this way. “I was raised in a pretty conservative home. My parents tried to balance…love with toughness.  As a little girl, I was really afraid… I was afraid that God was just waiting for you to mess up and then God would smite you. I was very focused on the rules and my impression of God was, if you kept all the rules you were on God’s good side and good things would happen and if you broke the rules, even the smallest infraction, then God was going to punish.”

But Sarah overcame her childhood to be the first woman in her family to attend college and graduate school at not one but two Ivy League Schools.   Cancer stopped her.  So, after the turmoil of treatment in Connecticut, she decided to sell all her possessions and buy a one-way ticket to Portland, Oregon.

She’d been in Portland almost a year, “I was still pretty broken,” she relates; when she opened her arms to a three year old girl on the Max.book_launch_slide  “It was rush hour I was sitting on the Max reading and this Somali woman gets on the train with 2 little girls.  And the train is really crowded…mom finds a seat and she has a chair for the 4 year old. The 3 year old doesn’t have a seat and this little girl was trying to sleep. Standing between her mom’s legs.”

While holding the three year old, Sarah struck up a conversation with her mom.  Before getting off the train, Sarah learned where they lived.  Fortuitously, before getting off the train the three year old put a pair of dice in Sarah’s hand.  “I went to their apartment to return the dice because I didn’t want this little girl’s first memory of America to be of someone who had tricked her out of giving up her only game.”   She entered their apartment to find mom and five little girls eating moldy bread dipped in ketchup.

“When I went in I realized how they were living.  Which is this totally dark apartment, no furniture, they didn’t have dishes, toothbrushes, nothing.  They just had the clothes on their back. The most dire thing was that they had run out of food…The mother was dumpster diving behind the Safeway giving her girls anything she could find to eat.”

Part of their difficulty came from illiteracy. “They’d gotten food stamps. But mom didn’t know how to use an oven.  So she spent all the food stamps on supplies to make Somali cakes (like cornbread). She can’t read, so she thought the word “broil” on the oven meant “on”  She put all the cakes in the oven to bake them, but it was on broil, so all their food scorched in a few seconds.  And there was a month before they got new food stamps. So she ended up dumpster diving.”

Sarah pieced together their story.  How mom and dad had fled Somalia’s genocide, how dad had abused mom and then left the family in Portland without money.  How mom had no job skills, didn’t know the language and had no support to help her raise five little girls. “She looked the way I’d felt when I first got to Portland…tired, scared, sad…  I thought… if it was the other way around…if I were dropped into Somalia under those circumstances…And I decided if someone found me in Somalia like that, I’d want them to HELP ME. So that’s what I did.”  She bought them necessities like pajamas, toiletries, food, clothing and her church chipped in furniture and dishes.

The “Invisible Girls” and Sarah are family now but it wasn’t an easy story.  Dealing with their first winter was just one more “new” situation they faced together.  Sarah describes one of these experiences this way,  “The first time I turned on their heat, the invisible girls ran around screaming that I’d set their house on fire!  They didn’t need heat in Somalia. So the only explanation for why hot air was coming from behind a wall was that there was a fire. And they knew that I was the one who’d started it!”

The book The Invisible Girls, published in April, details Sarah’s experiences as a cancer patient intertwined with meeting and connecting with this amazing Somali family.  The proceeds from the book are going into a college fund for The Invisible Girls.  Sarah recommends this book with, “I think it is an important read for cancer patients — to see that there’s life beyond the misery of treatment.  To see that it matters to the world that you try to survive (if that’s God’s will for you).”   Sounds like a book for everyone, doesn’t it?

The content of this blog post comes from the #HCHLITSS transcript from the Hashtag Project September 26, 2013 and from personal transcription of a radio interview on OPB conducted by Allison Frost on June 19, 2013.

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Sea-to-Sea: METAvivor and Metastatic Breast Cancer Awareness

1236342_223257914499618_934358087_n“…the biggest problem in the breast cancer business, and make no mistake, it is big business, is the fact that we’ve done nothing to change the death rate. NOTHING.” ~AnneMarie Ciccarella 

No Change in Death Rate From Breast Cancer Since 1970

Much media attention is brought to bear to advertise the breakthroughs in breast cancer research yet the truth is that the death rate from breast cancer is basically unchanged since 1970.  Actually, to be more precise, that is the death rate from metastatic breast cancer (MBC).

Sea-to-Sea For METAvivor

Real people are affected—people like little JJ and his father, Marine Lt. Col. Joseph Fagan.  Three years ago, Joe and Lainie Fagan were excited about the arrival of their new baby.  At age 29, and 34 weeks pregnant, Lainie received horrible news—she had metastatic breast cancer.  JJ was delivered immediately but his mama died nine months later.  “Joe Fagan and his wife Lainie were members of our local METAvivor group in Annapolis,” Dian CorneliussenJames (CJ) , founder of METAvivor explains.

“Joe approached me in February … said he wanted to tell people about METAvivor and raise awareness for MBC.  He wanted to do this by running across the USA … what did I think?” CJ says.  Needless to say, CJ was elated.

So February 1, 2014, Joe will start running.  The event is called Sea-to-Sea for MBC.  Joe will run from San Diego to New York City  3,845 miles, arriving in the Big Apple on Father’s Day.  He will be running through Arizona, Colorado, Kansas, Missouri, Illinois, Indiana, Ohio, Pennsylvania, New Jersey.  On the way he will meet with people who have metastatic breast cancer and recipients of METAvivor grants. “We plan for sponsorships and donations in kind to cover expenses. One hundred percent of funds raised through this fundraiser go to MBC research,” CJ states.

What is METAvivor?

METAvivor is an all volunteer organization founded 2009 to raise awareness of metastatic breast cancer and to fund research. Almost everyone working for METAvivor is a patient with metastatic breast cancer.

It’s hard to compete for media attention: the world of funding for breast cancer is primarily focused on prevention and awareness of breast cancer.  Pink, the color of breast cancer awareness, is everpresent, especially in Breast Cancer Awareness Month, October—what advocates for change call ‘Pinktober.’  “The pink community is enormous and has a huge amount of funding. They do everything with big splash … paid experts … “ CJ says.   METAvivor puts 100% of donations and fundraiser proceeds into its [research] grants. Others must raise millions to do what we can do with $250,000.  We want you to know that this week we chose 4 new grant recipients … Packages total $320,000!”

Metastatic Cancer

CJMany believe that the money that is donated to large philanthropic organizations is for research for a cure to breast cancer.  This is, unfortunately, not the case.  “We need to force a change in the conversation. Breast cancer doesn’t kill people. METASTATIC disease does. Their needs are URGENT,” AnneMarie Cicarrella,  Sea-to-Sea Run Volunteer, states.  “Prevention and early detection were noble goals but they have not worked.   How long will we practice triage in reverse?” CJ asks.

The primary goal of Joe’s run and for METAvivor is to bring *significant* attention to the metastatic breast cancer community. “  Their voices are lost in the pink hype,” AnneMarie says.

“This event is happening because the majority of public doesn’t even know what metastasis is.  We want to educate the public, raise awareness that 90% of all cancer deaths are from stage IV cancer,” says CJ.   Stage 4 is the medical terminology for cancer that has spread from the original site, like the breast, to other organs of the body.  It is fatal.  “We want to raise awareness that 100% of all “Breast Cancer” deaths are from MBC. …we want to raise awareness that only 2-5% of research funds go to stage IV cancer collectively,” says CJ.

The statistics–that 90% of all cancer deaths come from metastases, that 100% of all breast cancer deaths come from metastatic breast cancer, and that only two-to-five percent of research dollars go to studying stage IV cancer—are chilling.  But that is not the only problem with the numbers.   “Actually, the numbers of those with MBC are greatly distorted. WE ARE NOT COUNTED. We are counted only at initial diagnosis,” CJ relates.

What’s Not Happening in Research

METAvivor’s goal is to get commensurate funding, that is, funding for metastatic cancer that is equal to funding for awareness and prevention.  “Commensurate funding is the only way to stop the deaths of roughly 600,000 cancer patients every year in the US,” says CJ.  “Metastasis researchers are trying hard to find solutions, but at only 2–5% research funding … progress is snail pace.”

“We need these researchers to be funded. METAvivor is the only organization w peer-reviewed research grants solely for MBC. This is what Sea-to-Sea For MBC is trying to do.   Spread awareness.   Hear the patients.   Hear the researchers along the route.   Spread the word,” says CJ.

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AnneMarie explains her interest in metastatic research with  her mother’s story,  “Early detection doesn’t guarantee anything. My mom’s mets came after a 25 year dormancy.  My mom is a 2-time survivor.   She surpassed five years on both breast cancers.   She’s in the ‘good stats’, but she’s metastatic. ”  CJ also shared her experience.  “Only about 6% of BC is known to be genetic. I was told I was low risk .. .but am metastatic.   You never know,” she says.

“Metastatic cells can exist prior to one having a detectable tumor.   These cells do not respond to primary BC treatment.   Hence MBC,”  CJ highlights. “People can metastasize any time. Mets cells can lie dormant over 20 years.  Everyone is at risk.   Not to scare.   Just being realistic.”   Anne Marie points out, “All of the questions posed… why cells leave, what causes them to wake up from dormancy…this is WHY work of METAvivor is so important.”

At this point, when the cancer spreads to other places in the body, medicine can only offer treatments to stave off the spread.  One type of chemotherapy and/or radiation therapy is used, when it fails, another is used.  With metastatic disease, there is a cycle of one difficult treatment with side effects after another until there is no treatment left.  The patient dies.  “With metastatic friends, my hope is that they never run out of treatment options. Theirs are very limited,” AnneMarie states.

loriLori Marx-Rubiner, METAvivor Board member and Director of Nationwide Ambassador Program agrees, “We don’t know WHAT causes cells to leave the breast, we can’t distinguish those which will from those which won’t.   Studies are in their infancy…”  The fact that so little funding is applied to metastatic breast cancer is extremely frustrating for those whose breast cancer has metastasized.  “It’s good to try to prevent MBC.   BUT this does NOT help those who have already metastasized.   We want research to extend our lives with quality and ultimately to save lives.   This is not helped by prevention of mets research.  I’d like ALL chronic disease curable, I’ll settle for chronic.   I’d like to see my son marry, grandkids.  Many live years with MBC but life expectancy is still about two years. Quality and quantity…we need both!”

Volunteers NEEDED

If you want to make a difference and fund research to extend lives with quality and quantity, then be a part of Sea-to-Sea for MBC. There is a need for volunteers for the Sea-to-Sea for MBC event.  Take a look at the <a href=” https://t.co/VC2weNLrnC”>Facebook Page</a> and sign up!

“As metastatic cancer patient, more than anything we need the truth spoken, we need to be seen and heard,” says Beck Bills, breast cancer activist.

 

The Frog List

image“I can use all the prayers I can get!”

In August 2011, Jessica Rice had a little cough—‘nothing to worry about’–and a low grade fever that kept her out of work a couple of days. By early October the cough became “productive.”  She did what any healthy, 30 year old Vice President of Global Projects at Citi Corporation would do–she went to the CVS Minute Clinic for some antibiotics.  Since the cough had been around for a bit, they sent her to her primary care physician.  Convenience always paramount, she found a physician who practiced in the building where she worked.  He said she had allergies.

By the end of October, she’d been sent to a rheumatologist and was coughing up blood.  Finally admitted to the hospital November 8th, she relates,  “I left work Friday as someone who just seemed really sick, and by Monday, I was stuck in the hospital .. .with a mystery illness that wouldn’t get better.  Didn’t know if I would ever get to even go home at that point. ”  It took six days of testing to find out she had lung cancer.

Not a smoker, with no family history of lung cancer, Jessica’s diagnosis is an extremely rare cancer called bronchioloalveolar cell carcinoma in the diffuse form. With this form, surgery is not an option.  Her cancer is stage 4—there is no stage 5.

When she learned her diagnosis, she wasn’t told a prognosis, “I believe…there are far too many variables to give an accurate prognosis,” she says.  “I do ask my specific questions regarding timelines. For example: If I have zero response to this treatment and my tumors continue to grow at the same rate, how long until I succumb to them?”

Until she lost her hair, in August 2013, she didn’t even look sick.  “People didn’t understand why a normal, younger adult was being pushed around the mall in a wheelchair.  Or why I parked in handicapped spaces.  It was a bit annoying, watching people scan me up and down, trying to figure out my defect…” Jessica states.  “Seth (my fiancé) and I have coined it “the jaw drop” when people find out.”

Lung Cancer: The Facts

Currently, most people are diagnosed with lung cancer at stage 3 or stage 4.   According to radiation oncologist Dr. Matthew Katz, “Our ability for early detection is poor and earliest symptoms are pretty silent or nonspecific.”   As Jessica writes in her blog, “Lung cancer tops the list with the highest number of deaths for both men and women.  In fact, it kills nearly the same amount of people as colon, breast, pancreatic, and prostate cancers combined.”  Though her former life didn’t include this type of advocacy, Jessica is now using her writing and social media skills to share her story and bring the lung cancer experience to light.  In her blog post ‘Lung Lost Love,’ she continues to describe  the terrifying statistics around this disease “The 5-year survival rates for stages IIIa, IIIb, and IV are 14%, 5%, and 1%, respectively.” And she notes that, even if it is caught early, treatment doesn’t result in much improvement—5 year survival rate for stage IIa non-small cell lung cancer is 30%.

Jessica has been fortunate to have oncologists  that she can trust.  “My oncologist is up-to-date on the latest treatments.  And when I would ask about consulting with another doctor, he would encourage me, reach out to that doctor himself to discuss my case both before and after I met with them.”

One positive outcome is the proactive work these physicians have done on her behalf.  “The hospital pulmonologist and my oncologist (before I ever met him) sent my biopsies for EGFR and ALK testing automatically. It seems that some people have to request this from their doctors, so I feel fortunate that mine were up-to-date on the latest treatments and didn’t hesitate to take action. (I did test ALK+, and the targeted therapy crizotinib was my first line of treatment.)”  Since her diagnosis, she has had 6 different treatments including a clinical trial and radiation.

This past June, Jessica had a gran mal seizure.  Fortunately, she received emergency care and survived without severe disability.  Unfortunately, the seizure signaled that something had changed.   This brilliant woman–a Wharton business school graduate – (now age 32) has brain metastases.  In her blog she writes, “If abnormal organs are prone to defects then my brain would be the lightning rod of my body. My entire life it has been my blessing and my curse. It’s riddled with more IQ points than even I believe and an intuition that can border on creepy.”   She’s coined a phrase for the tiny metastases that can be seen on MRI scans as “brain lint.”

“My Frog List”

Awareness of her mortality ever present, Jessica wishes “someone on my medical team would talk to me about what I want towards the end. After my seizure, I know it could come anytime.”  Some of the things she wants are found on her blog. “The term bucket list was made most popular by a movie in 2007.  Everyone knows it means that these are the things you want to do “before you kick the bucket.”  Honestly, it seems a little cold and crude to me.  And, never one to blend in to the crowd, I decided to think of something a little more creative, a little more me.”  That’s why she calls hers My Frog List .  “My Frog List is what I want to do before I croak!”

Jessica grew up on a hobby farm.  She and her mother (her “best friend”) now own a small hobby farm in West Virginia.  “Our animals are our family,” she says.  Part of her frog list is about bringing home and family closer. “Sometimes I look for normalcy more than anything else,” she relates.  Her frog list would bring normalcy to her life. “My Frog List is relatively short. Top priority is to get my mom (and our animals) closer to me. Need to do this ASAP.  After mom is close, a Wedding and Honeymoon,” she says.

Making these dreams a reality is possible but only with the help of others.   Friends have set up a website to make the move, her wedding and her honeymoon a reality. “It’s comforting to know that I’m not alone – WE (Seth and I) aren’t alone – as we go through this.”

You can find out how to help by visiting Stage IV Blog and YouCaring.com.

“I really want to thank you all for … listening to my rambling, reading my blog, and sharing my story,”

Based on #HCHLITSS transcript September 12, 2013  #LCSM transcript September 5, 2013.  Thanks to the Healthcare Hashtags Project

Anyone Can Get Lung Cancer

deanas photo“My beloved mother was diagnosed with Stage IIIb non-small cell lung cancer in early June, 2012,” says Deana Hendrickson. “I knew virtually nothing about it…was heartbroken, and frankly angry, to learn that over half of those with lung cancer die within a year of diagnosis.”

The estimated new cases and deaths from non-small cell and small cell lung cancer combined this year are 228,190.  Deaths from lung cancer are estimated 158,480.  For both men and women, lung cancer is the leading cause of cancer deaths in the United States, claiming more lives each year than colon, prostate, ovarian and breast cancers combined.

One reason for the high mortality rate is that lung cancer is difficult to catch early.  Twenty-five percent of people who are diagnosed have no symptoms at all: the cancer is first discovered on an X-ray.  In others, coughing or shortness of breath are ignored or believed to be symptoms of flu or allergies. Often when symptoms become more severe, the cancer has spread.

Deana’s research also revealed that the 5-year survival rate for lung cancer is less than 16%.  “This dismal prognosis was made even more upsetting when I discovered that lung cancer federal research funding lags far behind other major cancers despite the fact that lung cancer is the number one cancer killer,” she relates.

Deana is on a mission to educate on this deadly disease. “I was so shocked by my own ignorance that I figured others must be just as clueless,” she says. She learned from experience the terrible stigma of lung cancer, “Mom and I learned first-hand about the stigma of a lung cancer diagnosis (the “did she smoke” factor, as if it’s a deserved disease).”

Between 15 and 20 percent of people who get lung cancer haven’t smoked a day in their lives.  Sadly the efforts made to dissuade cigarette smoking have had the effect of stigmatizing everyone who gets lung cancer. “I am the first to admit that I once thought lung cancer was a deserved disease. I’ve watched the commercials and read the ads linking smoking with lung cancer.”  Deana has changed her mind, “Smoking cessation and prevention efforts are wonderful…Unfortunately, these programs have…had the unintentional effect of perpetuating the perception that lung cancer patients asked for it. It took much thought and soul searching for me to realize that whether smoker, ex-smoker, never-smoker, no one deserves this awful disease, nor any disease for that matter.“

Exposure to second hand smoke, radon gas, asbestos, heredity and air pollution are some of the causes of lung cancer in non-smokers.

Deana is educating through twitter, founding the twitter chat the Lung Cancer Social Media twitter chat, hashtag #lcsm.  Based on the successful Breast Cancer Social Media chat (#bcsm), Deana is hopeful that the involvement of physicians, like chat moderator Jack West @JackWestMD and participant Martt Katz @subatomicdoc (who came up with #lcsm), will provide the kind of support and guidance to assure the chat is timely, supportive and accurate.  “I really wanted to have a hashtag to unify the lung cancer community; a “place” where we could all be as one group.”

Deana’s determination is based in loss.  “I was [my mother’s] primary caretaker,” Deana relates, She suffered terribly,” Deana remembers.  Deana lost her mother just nine months after she was diagnosed, in March 2013.  As she mourns she is taking action, “I’m a great believer in the power of people making the choice to do something, anything, to make the world a better place. In Judaism, it’s known as Tikkun Olam (literally “world repair” or repairing the world). That’s my inspiration.”

It’s Okay To Laugh, Cry and Feel Uncertain

6360_1109050649382_1320300607_282944_6468605_s1In 1990, Robert Harris and his wife and best friend, Cindy, had been married 10 years and had two boys, ages 2 and 5.  One day, Cindy complained of pain in her knee.  After going to an orthopedic surgeon expecting the usual sports related diagnosis, their world changed. Physicians discovered that she had Non-Hodgkin’s Lymphoma. Cindy went through chemotherapy and radiation. The family celebrated her “cure.”

For 16 years, Cindy was in remission.  During that time, the family moved from Maryland to Orlando, and watched their children grow up. Then, in 2006, while taking a neighborhood walk together, Cindy’s knee “gave out.”  Again Robert and Cindy went to orthopedic surgeons only to learn that she had a deadly form of cancer called Leiomyosarcoma.

“I very unexpectedly became an at-home caregiver,” Rob says.  Today Cindy has “been cancer-free, but had [her] leg amputated and [is] dealing with painful inflammation and erratic blood counts.  Chemo has affected [her] bone marrow. [and there is a ] Possibility of leukemia. [we’re] going thru testing now. Hoping for the best.  We are grateful for every day we have and look at it positively.”  Unable to use a prosthesis, Cindy is now wheel-chair enabled.

Robert Harris is best known online today as @Rob_Cares, a moniker he adopted after writing a book about caregiving and starting Rob_Cares LLC. “When I was told my wife had cancer, a 28% chance to survive and could die in 4 months, [with Leiomyosarcoma, Stage III]  I felt completely lost and helpless. Just like when 9-11 hit us. We didn’t know what to do.  I hated that feeling. As a result, I didn’t want anyone else to feel helpless, like I did.  I also wanted them to read our story and know that it’s okay to love, laugh, cry and feel uncertain.”

Published in July 2012, Rob’s book, We’re In This Together:  A Caregiver’s Story  is a 5 star hit on Amazon.  It is a #1 bestseller in the Physician and Patient Caregiver Category and continues to rank as the #4 top rated book in that category since it’s launch.  Why’s this book so special?

It is written from the heart.  “Most of us don’t practice medicine, yet, without warning, we are thrown into a medical environment and told to be a caregiver to our loved one. Without any experience, that is a daunting task. I wrote the book to help others become knowledgeable in their roles from the lessons I learned on my journey.”

The book chronicles both of Cindy’s cancer experiences, with 70 tips for caregivers interspersed with Cindy’s observations.  As Rob says, “I knew nothing when I became a caregiver. I was too proud to ask others for help or advice.  I was completely out of my element…in almost every regard. Whatever I learned was self-taught….”

Rob remembers a moment when he “dove into waters I had never encountered” at the drug store, “I had to learn about caring for a female in terms of their hygienic needs, etc. As a male, we are less attuned to beautifying ourselves and certainly not our mates. It was very uncomfortable for me when I had to shop for feminine hygiene products in the store for the first time. That was embarrassing. Thank goodness a woman approached me who could tell I seemed lost and didn’t know how to swim in that isle of the store. She asked for my list and located the products my wife was needing. Other than laughing at me (hysterically, I might add), she was very kind.”

From the mundane to the profound, Rob shares and provides guidance to legions of caregivers.  And there truly are legions-the numbers are astounding.  There are over 65 million American caregivers, a number that is 29% of the total population.  These caregivers devote 20 hours a week caregiving.  Almost a million and a half of those caregivers are children, between the age of 8 and 18.   Forty percent of caregivers have been diagnosed as clinically depressed.

Rob does the job of many caregivers.  “I attend all doctors appointments, quarterly check-ups, housekeeping, etc. Keep her spirits high.  I’m helping her adjust to her new life at home and making every day a great day for her. We have fun and laugh.”

That’s an important part of caring for himself as well.  “We love each day we’re together as a family. We created an acronym: ESD = Every Stinking Day live each day as if it’s our last,“ he says.

This strategy applies to everyone as well. “Everyone that interacted with us was in a positive frame of mind and happy as possible…. I communicated with “happy” family and friends only. If someone was negative or critical, they were removed from my inner circle until they changed their mood. That’s how we were able to remain upbeat during the most difficult of times.  We had a friend that would always say, “You poor dear.” She was ousted from our group as a result.”

Staying upbeat has been his goal.  “I wouldn’t allow myself to get stressed. Whatever was going to happen would happen.    Being stressed was not going to change our set of circumstances….To unwind from the stress of the events we faced, we laughed a lot, joked with others and made sure.   We would only watch happy shows and comedies/movies. I also went for runs for quiet time.”

Rob and Cindy use this strategy in their interactions with medical staff. “We played practical jokes on doctors, committed random acts of kindness and made friends with everyone.”  In fact they have made it their job to know their health care providers.  “The nurses, not the doctors, run the hospital.  They are in charge.  We treated everyone like family as soon as possible. I bought them snacks and drinks. We asked and learned about their families.  When doctors came in, we did the same thing. We made them tell us about them. Nothing professional. Some were resistant at first, but eventually, they warmed up to us. We made friends with them.  Most are our friends today.”

They made a deliberate effort to be connected. “Our goal was to be treated better than everyone else on the floor, especially when my wife needed them. “  Yet their idea of being positive and connected to others comes from having touched by death.  “My wife passed away and came back to life in December 2006. The doctors were right there for us the entire time.  Most people see angels and bright lights…She saw a shopping mall and Coach purses without price tags! Honest!” Rob states.

When asked how friends and family can help caregivers and patients, Rob is full of suggestions, “Communication is MV_3_12_RobHarris__197_WEBthe key. Call and ask what the family needs. If they say they need nothing, bring them food from a restaurant, come visit or just call the caregiver to see how she/he is doing. Outside contact is missed when stuck at home or a hospital. It’s important to stay in touch with friends and family.”

Rob’s first book is a love story but it is also about cancer.  “It puts cancer out in the open and all the emotional dilemmas that come with it. We’re human. My book speaks to that.”

Now, Rob is editing another book called, We’re In This Together: A Caregiver’s Guide which he hopes to have ready in the fall of 2013. This book will continue to describe his learning and also take a “psychosocial perspective.”  Rob says, “As men, we don’t share our emotions. I held them back, as well.  I learned as I went along that it was okay.”  And he promises that like the first book, “you’ll be laughing and crying.”

Rob Harris’s Book is available at Barnes and Noble, at Amazon, We’re In This Together:  A Caregiver’s Story and on Rob’s website.  This post is a summary of a twitter chat #HCHLITSS with Rob conducted on May 30, 2013 and personal communication.

From Outrage To Action: Dian (CJ) Corneliussen-James and METAvivor

“I started METAvivor out of outrage.”

Dian (CJ) Corneliussen-James Co-Founder of METAvivor Research and Support, Inc

Born from the outrage of four women, METAvivor Research and Support, Inc. is a non-profit with a purpose–To increase research funding for metastatic cancer.

Dian (CJ) Corneliussen-James  is one of those women.   A self-described shy child, Ms. Corneliussen-James  (or CJ as she likes to be called) is anything but retiring and reserved.  Raised CJby a progressive cause-oriented Pastor father and reserved Quaker mother, CJ got a taste of traveling as an exchange student in Germany 1968-9 and Rotary Fellow in Austria 1972-3.  After getting a masters degree, CJ joined the Air force in 1979 “to pay college loans.”  She stayed with the Air Force for 24 years.  “I had a great life– variety, travel, pay and promotions.”  During her time in the Air force she tracked and analyzed Soviet satellite activity, collected information against the Eastern Bloc, served as intelligence lead on the Joint Chiefs of Staff for the Somalia Conflict and resolved the cases of Americans lost during the Vietnam and First Gulf Wars.  In 2003 she retired as a Lieutenant Colonel and began a second career in the civil service as the Senior Intelligence Officer at the Defense Prisoner of War/Missing Personnel Office.

Three months after a clean mammogram she felt a lump in her breast.   Her world changed with the diagnosis of stage II breast cancer. . “Surgery, chemo, radiation, pills…Welcome to the Pink World,” CJ quips.   Her career was cut short with a subsequent diagnosis of systemic lupus and the spread of breast cancer to her lung – all in a period of 19 months.  She’s had a lobe of her lung removed as well as continuous chemotherapy since then. This year she had surgery for the collapsed remaining lung. “Recently a former HS teacher said I was the only one she knew who has been reincarnated several times in one life. “ CJ stated.

Although she retired, CJ didn’t stop working.  She turned her analytical mind, vast experience and understanding, to her disease and began to search for research on metastatic breast cancer (MBC).  What she found was a dearth of research on metastases of breast cancer and on metastases of all other cancers.

What are metastases?  People who have Stage IV cancer have metastatic disease.  Metastases means the spread of a cancer from the place of its origin, be that skin, breast, blood or lung, to other url-1organs throughout the body.  “The public doesn’t even know what mets is. Say you’re stage IV and they ask when will treatment end. The Answer: When I die, “ CJ explains.

“A few cancers kill without metastases. Ninety percent (90%) of  metastatic cancer patients die of metastases. One hundred percent (100%) of metastatic breast cancer patients die of metastases,” CJ states.

Why is there so little research on metastases?   CJ found that most of the funding from donations and taxes has gone to early detection, prevention and treatment.  “In the US only 2% of research funds goes to Stage 4 cancer….One study showed the American Cancer Society gave ALL stage IV cancers 2.3% of  its research budget in 2010. The Federal government gave 0.5% to stage IV cancers in 2005. “  The same is true for other organizations. “ACS, Komen, Avon, NBCC , ALL focus their funding on prevention and have NEVER defined CURE.”

Yet people are dying from metastases. “Prevention and treatment have failed to make a difference for most cancers.  Only lung and colon cancer have seen improvement…[with this type of funding.] “ CJ states.

CJ began making contacts, asking questions and collecting information.   Her quest led her to friendships and working relationships with well-known researchers and cancer advocates such as Danny R. Welch, Ph.D. and Clifton Leaf.  There are “Superb Stage 4 researchers and proposals.  But if [they are] funded at only 2%…they can’t do much with that, “ she says.

CJ’s physicians also sent other people with metastatic breast cancer to her for support.  She was shocked to find that virtually none of the support, research or activities that typify the very successful “pink” breast cancer movement extended to the metastatic breast cancer community. “People don’t like to think about stage IV. Too depressing. We’re in the closet…Breast Cancer events don’t address Metastatic Breast Cancer.  [These organizations] think it will dampen mood. No Metastatic Breast Cancer speakers, topics or literature. Metastatic Breast Cancer questions [are] avoided, “ CJ explains.    Metastatic cancer patients are not welcome at many support programs. “Newly diagnosed [MBC] patients not infrequently approach Breast Cancer groups for support.  Unfortunately, these groups often suggest to MBC patients that they are not welcome, or that they must not mention their diagnosis to the others for it would be too frightening for them in their fragile condition.  This can be devastating.”

However  CJ believes that Metastatic Breast Cancer patients are really better off with other metastatic patients.  “In all honesty,…only other MBC patients can provide true insight, advice and understanding.  Discussions concerning mastectomies, lumpectomies and getting through treatment to return to normal life are not helpful and only serve to remind the MBC patient that she has a much more difficult road ahead.”

In 2007 CJ officially established a local support program in Annapolis Maryland that within six months grew to 24 members.

Soon she was looking for ways to increase funding for metastatic breast cancer research.  “METAvivor was created to fill a critical gap in Awareness, Research and Support.  Many don’t realize stage 4  needs and the disparities in support and research.  Educating people is critical.”

Screen Shot 2013-03-24 at 7.26.33 PM

CJ and three other women who were part of the support group she had established in Annapolis created METAvivor in 2009.  “We had to be a nonprofit to raise funds.  The four of us followed the free non-profit checklist on Maryland’s state government site.  Our Goal was to do everything possible free or donated.”  And they achieved this:  METAvivor  is 100% volunteer and a 501c3.

Two of the four women who worked together to create METAvivor  died during its first year of existence.    “Patients are so devoted they work with us until weeks before death.  We would never ask or expect it, but they do.  [METAvivor is that] Critical…to them.”

One of the main problems with metastatic disease is finding the numbers.  “Numbers a HUGE issue. There is no code for Metastatic Breast Cancer. It is counted only if the person’s first diagnosis is stage IV.  There is [clear indicator] how many live with stage IV.   Others try to down the numbers. Stats are very hard to find.”  Yet even with people who are first diagnosed with stage IV cancer the figures are shocking, “One third of cancer patients die annually, most from metastases.  Stage 4 research needs one third of the research funds, not 2%.”

METAvivor expanded its support function and now helps people elsewhere establish their own support where programs are lacking. “The problem is that Stage 4 patients have unique needs.  They need dedicated Stage 4 SUPPORT.  We can combine with other Stage 4 cancer patients, but not with primary patients. “   Sadly there are only 40 support programs nationwide for MBC patients, ten of these in NY State.  “The vast majority of patients have nothing ,but MBC has far more than most stage4. It’s TRAGIC,” CJ states.

CJ and others at METAvivor are on a quest.  “For us this isn’t optional.  We are driven by a critical need and  a mission no one else does.  We can’t stop until we get proportionate research and support.”

CJ and METAvivor know that research on metastases in all cancers  is needed.  “Research for breast cancer does little to nothing for me. Research for stage IV anything DOES help me and all stage IV [cancer patients]. This is [the] critical point.  Progress in any stage IV cancer research helps other
stage IV cancers. We want stage IV research across board,” CJ states.  “This is a stage 4 problem…we need to rally the stage IV community of all cancers and have the healthy community help raise our voices … say enough already!  Help us promote 30% for 30%! They are welcome to 70% to use as they wish. No new money …need to redistribute.”

METAvivor created their ribbon in order to involve all metastatic cancer patients.  “Our Ribbon’s Ribbon_whitelinedblue/green base means stage IV. We hope other stage IV groups will use our base and replace pink with their color to show our common bond/cause.”

People with metastatic cancer need those who are not sick to speak up. “Everyone has challenges. I’m in remission and retired but help my 96year old mum and I have a husband newly diagnosed with cancer and I’m in ongoing treatment…

METAvivor Inc  is 60 percent patients and 40 percent not. All have challenges. Some live alone. Some are quite ill. Some are overworked. But all highly devoted,

We need more non-mets help pushing fairness for all terminal cancer.  It’s [healthy] people… that will help achieve parity in research.  Be vocal. Challenge organizations to increase research. “

To this end, METAvivor is starting an ambassador program.

“We will have teams nationwide, broken down into 11 regions, working on building awareness and promoting increased research for MBC and simultaneously for all stage IV cancer. …I am currently working with a very small team to build a comprehensive plan… In the meantime, if people wish to express their interest…, they are welcome to email their contact information and geographic location to me at cj@metavivor.org.

METAvivor has an extensive and growing awareness program with annual campaigns such as 30% for 30% (2011) and the Elephant in the Pink Room (2012).  It also offers donors the rare opportunity to donate exclusively toward metastatic breast cancer research and have 100% of their donation used toward that end.  METAvivor is in its fourth year of awarding annual metastatic breast cancer research grants and by the end of 2013 will have awarded more the one-half million dollars.  CJ served four years as President of METAvivor, stepping down this year to have more time to focus on her area of passion – advocacy.  She now serves as METAvivor’s first dedicated Director of Advocacy.

For more information please read  CJ’s post on 2% research http://t.co/KMdy1xO6o0 and her post on 30 for 30: http://t.co/0qCJ71tKPq

Based on March 21, 2013 transcript of #HCHLITSS twitter chat.

PTSD and Cancer Diagnosis

Reading blogs by those who have been diagnosed with cancer is illuminating.  At least for some breast cancer patient blogs, their experience has been confirmed by recently reported research.

A telephone survey of women who received breast cancer diagnosis confirms that almost 1/4 report symptoms of Post Traumatic Stress Disorder.  Alfred I. Neugut, MD, PhD of Columbia University  and colleagues reported the findings of the study conducted between 2006 and 2010  online in the Journal of the National Cancer Institute. Identifying and managing PTSD early on could help women with their experience of breast cancer diagnosis.  This is one of the first studies done to measure PTSD, the authors stated.

Thank you  MedPage Today for reporting this story.

Leading Breast Cancer Experts report on prevention of cancer through reducing exposures to chemicals and radiation in our environment. We can help to move this information forward into an action plan within the Obama administration by following a link described in Susan’s blog post. As Margaret Mead so eloquently stated, “Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.”

A4BC Founder's Blog

Yesterday I put an article in my Breast Cancer Newspaper about a federal committee of leading breast cancer experts that released a report about reducing our exposures to chemicals and radiation in our environment. Today I received an email from Jeanne Rizzo, R.N.
President and CEO of the Breast Cancer Fund stating that she is serves as a co-chair with the federal committee.

congressimagesThe report, “Breast Cancer and the Environment: Prioritizing Prevention,” concludes that “preventing environmental exposures is the most promising path to decrease incidence of the disease, and calls for a national breast cancer prevention strategy.”

The report’s first stop is the desk of U.S. Secretary of Health and Human Services Kathleen Sebelius, who must create an action plan to implement the report. This action plan can lay the groundwork for a national prevention strategy that will require commitment and hard work from the Obama administration and Congress.”

Write…

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Good news on Metastases Research!

Just a short note “quote”…

The Answer to How Breast Cancer Invades Bone

Researchers recently solved the mystery of how breast cancer takes root in the bone. Now, the discovery has led to an experimental drug for breast cancer that has spread to the bone.

At Princeton University, Society grantee Yibin Kang, PhD, found breast cancer cells use a protein called Jagged1 to upset the normal balance of bone builders and bone demolishers. Jagged1 recruits cells that normally break down bone to dig deeper into it. This in turn releases molecules that further spur cancer growth.

“We knew the bone is a fertile soil for breast cancer to spread to. But we didn’t know why. We didn’t know how to make bone less fertile soil,” says Kang, Princeton’s Warner-Lambert/Parke-Davis professor of molecular biology. “Now that we know, the next step is to design drugs to break that vicious cycle.”

Breast cancer spreads, or metastasizes, to the bone in 70% to 80% of patients with advanced breast cancer. These malignant cells invade the spine, ribs, pelvis and other bones, causing pain, fractures and other complications. Current treatments offer symptom control but little else, Kang says. “The hope is that with more options, more combined agents, we can effectively control bone metastasis and hopefully treat it as a chronic condition,” he says.

Kang and his lab team are now working with drug maker Amgen to test an experimental monoclonal antibody (a man-made protein) that blocks Jagged1 in mice.

Kang hopes his quest in the lab one day results in lives saved in the clinic. “What we try to do in the lab is to figure out what the enemy is capable of and how cancer achieves its goal of spreading and killing patients,” Kang says. “You have to know your enemy to defeat it.”

(Please be advised this is a direct quote from American Cancer Society)

Responding to Komen’s New Awareness

MBNCBuzz just posted this advertisement by the Komen Foundation.  It is the first time that the Komen Foundation has acknowledged metastatic breast cancer, Stage IV, in a marketing campaign.

The irony that Susan Komen died of metastatic breast cancer is not lost on those who live with it.   Recurrences of breast cancer are not uncommon.  Close to one-third of the women considered “cured” of breast cancer will suffer from a spread of the cancer called metastases.  This can happen many years after their initial diagnosis.  Over 90% of breast cancer deaths are due to the spread of the disease to other parts of the body, such as bone, lungs, liver and brain.  Although there is no exact numbers collected, a rough estimate is that around 162,000 women are living with metastatic breast cancer in the United States.  There is no information collected on historic trends.  Treatments to prevent metastases do not exist.  Treatment to eradicate metastases do not exist.

There has been much discussion in the cyber world of the foibles of the Komen Foundation.  One of the best descriptions of the use of monies by Komen was written by an financial analyst Rachel Moro in her blog The Cancer Culture Chronicles.  She explains in pie charts and graphs the intricacies of Komen’s spending and reveals how in 2010 only $66 million to research in a year when its total revenues were $389 million.

Those who live with breast cancer wonder where all the money that has been raised has gone.  They are concerned that funding for research to cure breast cancer has not been directed at what actually kills breast cancer patients, metastases.  So many loved ones have been taken by metastatic breast cancer.  One of those who has been lost is Rachel Moro.

This advertisement does not come close to the whole story of Bridget Spence’s life with breast cancer.  Her most recent post on My Big Girl Pants is a poignant reminder of the suffering experienced by those who have metastatic disease.  As of August 28, 2012 Bridget’s cancer has spread.  She is not able to be a part of a clinical trial.

The National Breast Cancer Coalition has set the year 2020 as the end of breast cancer deadline.  The organization has put together a Blue Print  for the End of Breast Cancer.  The Coalition is bringing together researchers in a series of summits.  Suggestions for research provided by just one of the summits include developing technologies to detect the first signs of metastasis . Another suggestion is to do longitudinal cohort study, to follow women from the time of diagnosis, comparing those who develop distant metastases with those who do not.  A third idea is to do this in conjunction with tissue collection and genome sampling.

Funds from the Komen Foundation could be used for any of these ideas.  As Ginny Knackmuhs stated in her post the best copy for this marketing campaign would be

“The true source of HOPE for metastatic disease is research. That’s why we at Komen are dramatically increasing funding for research into the cause of metastases (the spread of cancer) to stop it in its tracks and save the lives of the estimated 155,000 women and men living with metastatic or stage IV breast cancer in the US, as well as the lives of 30% of early stage survivors who will have metastatic recurrences in the future.”

Please look at all the links to blogs of women who are trying to make a difference.  Perhaps putting more pressure on the Komen Foundation to partner with NBCC or communicate with MBCC is in order.  Ask yourself what you can do to be a part of the solution.  This effort to save those with breast cancer needs ideas and action.

Cancer Language: Erasing Reality

culture:  the integrated pattern of human behavior that includes thought, speech, action, and artifacts and depends upon the human capacity for learning and transmitting knowledge to succeeding generations  Merriam-Websters.

The first  Sunday in June is set aside as National Cancer Survivorship Day.

It is described on the website as “an annual, worldwide Celebration of Life,” as “a day to unite together in a show of solidarity of collective cancer survivorship.”

Yet how do people who have cancer feel about this day?  A large number of bloggers have answered that

question.  Yvonne Watterson of Phoenix Arizona is one of those bloggers. She is part of a large cyber community, bloggers and twitter activists who tweet with the hashtag #bcsm.  “I have been educated by amazing bloggers. I knew nothing of metastatic cancer until #bcsm.”

With no family history, negatives on all her mammograms, and a love for fruits, vegetables and exercise, Yvonne was caught off guard by her diagnosis of breast cancer on November 11, 2011.  As she states, “I used to complain about the pace of life as a woman trying to play equally well the parts of mother, wife, friend, and boss.”   Not anymore.  And since that day she has written about her experience on “Time to Consider the Lilies.”

One of her fellow bloggers is Marie Ennis-O’Conner.   In Journeying Beyond Breast Cancer  The stimulus for this posting was the media’s coverage of Robin Gibbs death  ‘Robin Gibbs lost his long battle with cancer.’ In Why Words Matter,  she asked other bloggers the question, “Do you feel the exclusivity of the term survivor focuses attention upon those who are living, essentially erasing those who are dying from the disease?”    Yvonne took up the challenge to try to write about the language of cancer.

These women with breast cancer are trying to bring awareness that the terms, “battle,” “winning,” and “survivor” are all the part of the language of the cancer culture.  As Yvonne states, “Language is inextricably tied to culture,

and a definite cancer culture has evolved with a language all its own…There are so many messages out there suggesting that perhaps I chose to take on a battle and then did something to defeat an opponent.”  One of the most unsettling aspects of the language of this culture is the exclusion that so many feel.

“Those who are dying or have died are described as ‘losing’…  I don’t think we can really choose not to be victimized by cancer. It’s an unexpected assault, defying explanation.”

Yvonne believes the media treats breast cancer differently.  “…Breast cancer…has been sanitized by [the] media.  Too many pink euphemisms, myths and war metaphors are attached to cancer.  Is this a concerted effort to conceal the reality of it?”  Yvonne asks.

“I almost cried when I read Marie’s words about [erasing those who are dying],” says Yvonne. “It reminds me of a post I discovered by someone identified as Kelly K. Here it is:

“With no family history, no positive genes, I was diagnosed with stage III lobular triple positive breast cancer at 29 and mets [metastases] at 30. That year my oncologist practice selected me to be honored at a Komen luncheon. I spent a few hours …being interviewed for a video..[Komen] do[es] about the honorees’ breast cancer story…. Komen edited out every reference to my mets in the video….If that isn’t pink washing, I don’t know what is…”

Setting aside a day for “survivors” may seem innocuous to some but not for many in the breast cancer blogging community.    As Yvonne points out,  it “seems so insensitive and disrespectful to those who have been killed by the disease or those who are unable to live without being shackled to it.” For clarification Yvonne explained that the word “’Survivor’ …seems to focus on a stage of the disease that is more ‘socially acceptable.’ The often harrowing stories of those who are living with metastatic breast cancer are rarely publicized by mainstream media.”

In addition to erasing the fact that breast cancer spreads in 30% of those who are diagnosed, integrated in the culture of breast cancer is  “a wholly dreadful expectation that you should be more cheerful if you got the ‘good’ kind of cancer.”  Likewise guilt is part of the cancer culture.  “‘Prevention’ is wrapped up with ‘surviving’ and tends to make me think I could have done something to prevent the diagnosis.”

Somehow those with cancer must be like the contestants on the reality show “Survivor.”  They must outwit, outplay and outlast cancer.  Second guessing themselves is the fate of those living with this cancer culture.  “I  am still indignant about cancer showing up in my life and I am afraid of it progressing. Before the diagnosis, I hadn’t given it a second thought … it was the thing that happened to other people, perhaps women who missed their mammograms or who had a family history, but not to me. Why me? And so I go back to thinking I may have caused it,  which I know makes no sense whatsoever, but I can’t help it.”

So what word does Yvonne believe encompasses why one person has cancer and another doesn’t or why one person’s cancer spreads and another’s doesn’t.  “I don’t know the “right word” for those of us ensnared in the complexity of  cancer. But it seems more to do with ‘luck.'”

In her post,“he not busy being born is busy dying,”  Yvonne draws parrallels between avoiding the reality of cancer and escaping the “troubles” in Northern Ireland.  “I relate my experience with cancer to growing up in Northern Ireland. We didn’t live in fear every minute but knew we were lucky.’Devices of Detachment’ by Damian Gorman explores how Northern Ireland’s people distanced themselves from

junecaldwell.wordpress.com

violence. Seems we do same with cancer.”

I’ve come to point the finger
I’m rounding on my own
The decent cagey people
I count myself among …
We are like rows of idle hands
We are like lost or mislaid plans
We’re working under cover
We’re making in our homes
Devices of detachment
As dangerous as bombs.

#BCSM and the blogger community have been a lifeline for Yvonne.  “Were it not for this online community, I know I would be quite lost in the culture of breast cancer.”

There she has support and a place free of cancer culture expectations,  “I am so grateful for the solidarity and the safety I have found within the blogging community.  I think we all cry out ‘Why?’ and our collective attempt to see that this question is answered is powerful.  I believe we are unified in our search for answers to questions we are afraid to ask within a world that seems to ‘celebrate’ those who drew the long straw… But, for me personally, saying I survived cancer would be like saying I survived growing up in Northern Ireland. I would never say that. I would say that I was just luckier than others.”

Consider the lilies, how they grow: they neither toil nor spin; but I tell you, not even Solomon in all his glory clothed himself like one of these.”  (Luke 12: 27)

Motivated by Love

Dr. Susan Love’s Breast Book  was our “go-to” book when my mother was diagnosed with breast cancer.  We were able to understand the pathology reports because of it.  I know that we (my family of sisters) were all reassured by knowing there was someone “out there” researching and trying to find out more about breast cancer.  She has done so much to teach about breast cancer.

Now Dr. Love is trying to connect researchers with women.  An Army of Women

That’s right, if you have two X chromosomes you can participate!  She wants 1 million women to participate.  You don’t have to have had breast cancer, or even be related to someone who has had breast cancer, to participate.  All you need to do is sign up and answer a few emails a month.  I’ve signed up and I hope you will consider signing up as well.

Here is a video created by a twitter friend, who is a breast cancer survivor, that explains more about it.

Dance Like No One’s Watching

Do you live each moment unflinchingly?  Do you taste life the way you do the last bite of your favorite food or savor  its essence as you would the fragrance of summer’s final gardenia?

Crisp…the deep blue of an October sky…exhilarating…the ocean spray on a winter day… vibrant…the ecalls of cardinals in April…fresh…the laugh of a toddler

What if you were with a group of people who are all present…all noticing?

What if you were with a group of people who were all searching for three words to express this sense of be-ing and capture it?  Instead of New Year resolutions, finding three words to live by…

That’s what happened January 2, 2012 ….Soul Speech.

When you hear soul-speech, or in the case of a tweetchat, read and interact with people whose hearts are singing, you are lifted up and changed.

Soaring the stratosphere, the group that tweet under the hatchtag #bcsm, reached for Jupiter as each shared the three words that they will use as guideposts for 2012.

Stales: T3: Cancer’s taught me that the vision and goals will always change. Very few things in life can be “planned

Itsthebunk:  I’ve had it 3 X since 1994, so there’s been a LOT of evolving & personal growth. Still hard2 figure out where it fits in my “identity

Ihatebreastcanc: I used to think bc happened to “older” people or “other” people. But not me.

Bcsisterhood: T3: I was the girl who did EVERYTHING right & I still got breast cancer. James’s death again reminded me the best laid plans go south

#bcsm stands for breast cancer and social media…many of the participants have had cancer in one form of another…although most have had or are experiencing treatment for breast cancer. Some participants are or have been caregivers of someone who has cancer.  The participants of #bcsm are welcoming and not picky…they are supportive of each other and anyone else who wants to participate.

Their three words have meaning;

JediPD: “Serenity” covers all: conquers fear[,] builds courage[,] inspires elegance and calm

Lauriek: “Love”, “hope”, “bravery”

BethlGainer: Peace, perseverence, courage

JackieFox12: Mine are create, nurture, appreciate. I love this three-word concept. Resolutions are too much like homework.

BRCAinfo: love community peace

DrAttai: : My words were resilience, rejuvenation, and serenity

MaverickNY: T1: mine are rebuild, refresh, renew

BCsisterhood: Three things you need to survive most anything: God, guts & perseverance.

Brandie185: 3 words … I’m bad at this kind of thing, but I’d go with celebrate, enjoy, heal.

Now, pick one of your 3 words… and expand on that… What does that word mean to you and your vision for 2012?

jodyms: Discernment: making the most of what matters. Don’t sweat the small stuff

itsthebunk:I’ve used 2, 3-word phrases, which works 4 me. It’s all about emerging from the past & being back out in the world, building anew.

JediPD: We all live lives of uncertainty. Have Long term goals and short term plans. Buy green apples. Watch the sunrise. Smile. Live!

BCSisterhood: combo of “courage” & blind faith, & ability to *really* feel that I can have “it all” too. Being the phoenix & soaring

BCsisterhood: RT @jorunkjones@AllThingsCrgvr Yes, I hope to giggle my way through much of this year. Giggle, half full glasses & an open heart

When asked about making resolutions…

Bcsisterhood: @stales T2: We all have the resolution to live life and be healthy, but the truth’s a little scary because it’s out of our hands

Debmthomas: @stales T2 looking at a whole year can be daunting to anyone, ESP cancer survivor, so think for the next 24 hrs I will do …..

Annwax: @lauriek There is no reason why you asking to live well in longer terms, That is the human nature, and everyone wants that

Jackiefox12: T2 I don’t know if resolutions were harder to keep as survivor but I know they didn’t get easier. I’m not a fan of resolutions

Jodyms: T2: Each year makes the resolutions — or the three words – become more meaningful. Done with anything that’s extraneous

Chemobrainfog: T2 goal setting, yes I have goals but I still try to stay in the moment.

Jackiefox12: @BCSisterhood You know what they say, If you want to make God laugh, make a plan. But plans are important.

stales: T2: I set a mini one each night: That I get up the next morning, put two feet on the floor, & go

BCsisterhood: I’ve opened my heart to the possibilities of a new year & I’m looking forward to being surprised, pleasantly, I hope

Allthingscrgvr; T2 One day at a time, one foot in front of the other

How has (or did) cancer change your vision of yourself? Have you developed a new one yet?

Feistypbluegecko: T3 and I know longer take so much for granted, am more proactive

Jodyms: @JediPD I think we are, too:) I love watching what happens here every Monday. Cancer stinks. But talking about it w/friends rocks.

Bcsisterhood: @jackiefox12 Our resiliency knows no bounds. Mankind can, and does, survive the most horrendous things

Feistybluegecko:  Some goals can help us, building our strength for the times that might not be so easy, and giving us heart for when times are good 🙂

Annwax:  Life is a roller coaster ride, thr r times when u are on the top, and then u are on the bottom, you must stay on the ride of wellness

Feistybluegecko: For me, having these goals has been a reminder to make the most of good times, appreciate the good things

Annwax: Finding contentment in what you have, may help the uncertainty of what might come.

Jodyms: @talkabouthealth @jediPD – this is something @being_sarah and I discussed earlier: take time for tea, and looking for Jupiter.

Stales: FYI, jupiter is just below the moon tonight, go look!

Jackiefox12: T3 I learned I’m more resilient than I thought. And less squeamish 🙂 not sure that’s a vision!

Debmthomas: @jodyms love that, I write out what my “perfect week” would be like, what elements I need to feel good, then work them in

Jedipd: What a wonderful family of friends!

Chemobrainfog: just saw Jupiter wow!

Feistybluegecko: T3;) cancer shook me to the core, confronted me with reality of mortaity, made me take stock so I decided to recalibrate and refocus

Lauriek: T3- So much changed when I got cancer. Still struggling to find the new “vision” – 6 years post diagnosis and 5 years post mets

jackiefox12: My advice if in tx: it’s part of you, not all of you. You have love & laughter, family & friends. Be sad or mad or glad but be you.

Debmthomas: @stales …I was just thinking tonight that any day can be the first day of a new year, each day has great potential

Stales: Let’s make a plan to revisit our Three Words for the first #bcsm chat in July of this year! Okay? Deal!

Stales:  Good night, Moon! RT @chemobrainfog: Good night, Jupiter?

And they have fun!***

Does your soul speak?

Heart Song, Soul Speech, Dancing like no one’s watching…try it.

** My three words Dr Attai

***Shaping 2012 with 3 words

*** I can’t do it justice here.  Please visit the website to read the transcript!