N.E.D. The Movie And My Thoughts About This Special Time

Benefit Screening of Film Documentary:  N.E.D.   No Evidence of Disease

90,000 women will be diagnosed with a GYN cancer this year, and unfortunately one-third of them will die.  Often patients will say, “I didn’t know,” referring to the signs and symptoms, which often go unnoticed and undiagnosed until it is too late.  That is why it is so important for a film like No Evidence of Disease to be seen by a large audience.

Please join me for a special one-time screening of No Evidence ofDisease on Sunday, September 28 at the Edmonds Theatre. Proceeds from this screening will be donated to the nonprofit FORCE (Facing our Risk of Cancer Empowered www.facingourrisk.org) Please help get the word out about this film.  Making vital information about this intimidating subject accessible is no easy task, but No Evidence of Disease, through a compelling combination of storytelling and music, accomplishes it.

You can purchase tickets for this event at:  http://www.brownpapertickets.com/event/688161

In 2008, six cancer surgeons from around the country discovered their shared passion for medicine extended to music.  What began as a one-time gig playing cover songs for fellow surgeons turned into a rock band, named for the words every cancer patient dreams of hearing, No Evidence of Disease (N.E.D).

The award-winning documentary of the same name, No Evidence ofDisease, interweaves the harrowing experiences and remarkable courage of women, devoted families, and these dedicated musician-doctors. As music and medicine join forces in the fight for life, the surgeons are transformed into rising rock stars, and their patients and loved ones jump on the bandwagon, infusing the struggle for survival with heart, hope and Rock ‘n’ Roll.

Check out the trailer for the film here: https://vimeo.com/57960109.  The film was also featured in U.S. News and World Report:http://health.usnews.com/health-news/health-wellness/articles/2013/09/03/surgeons-form-band-ned-to-raise-gyn-cancer-awareness.

It would be wonderful to see you in the audience, and please help me spread the word. This is an opportunity to spend time with friends whilecreating life-saving awareness of this disease.  Your presence will have an exponential effect – the best tool for us to save lives is knowledge, and this screening is a great way to get it.

Deborah Binder

DX OVCA June, 2009 and currently “dancing with NED”

Questions? Contact me at 425-361-3942 or jaideborah@yahoo.com

Hello From sunny Seattle!

I am typing this section of my post with the new Hanx Writer app on my ipad.  To be honest, this is really fun.  I love the clickity clack and zingy sounds.  It Brings me me back in time.  High school typing class, white-out, correction ribbon and lots of do-overs come to mind. I am not the best typist.  So I am really happy that our most adorable fan favorite, one of my favorite actors, Tom Hanks, created this for me and you.

Well, speaking of entertainers, I have an exciting event to tell you about.  One of our sisters, Deborah Binder, is hosting an benefit up in Edmonds called "N.E.D. The Movie".

N.E.D. stands for "no evidence of disease". A state of N.E.D. is every cancer patient's dream.  It represents a time before we are "cured".

For me, while in front line chemo, I relied on faith to get me there, along with family and friends, but truth being told, I was not prepared. I prayed as often as I could but in the back of my mind, I needed to see it to believe it. I was N.E.D. for about 2 years, which is a gift from God.  Now I remain in my first recurrence.

Our N.E.D. time is precious and often fleeting. Make a plan!

I did not feel well enough to travel, and like everyone else, responsibilities of real life become more pressing as we make a valiant effort to get back to normal.  Insurance, medical leave and expenses demand that we get back to work.

I am all for a law that provides for at least 90 days of recovery during N.E.D. Going through aggressive cancer treatment is a full time job so getting a true vacation from cancer and stress would improve the recovery process, in my mind.  Ok, enough politics.

Make a plan and get the support of your family and friends.  It is up to us to lead this and let people know that when we reach N.E.D. we want and need to reward ourselves, and honor those who have helped us along the way.  

It is so difficult to make a plan when we are in a chemo cloud of pain, nausea, brain fog and legitimate uncertainty.  Sometimes all we need is a weekend of fun, or a mini trip to a favorite getaway.  Maybe it is a quiet celebration with loved ones. The months of N.E.D. are a treasure, a time when we get to visualize our lives as living with a greater purpose, with more urgency.

So while we are figuring out work and other day to day priorities, set aside time every day for your spiritual, creative and empowered self.  Do what you love if at all possible.

Celebrate this special time and communicate to others that although the treatments have stopped, our bodies, your body, needs time to heal.  It may take a few months or even years.  Allow them to process that this time of healing can take extra time, so ask for their patience.

Please visit the quaint city of Edmonds on 09-28-14 for this special event!  I will see you there!

Peace and blessings,

Servivorgirl

A Reassuring Voice For Women, Dr. Heidi Gray

Dr. Heidi Gray of SCCA Symptoms and Risk Factors  (Video Link)

Dr. Heidi Gray on Symptoms of Ovarian Cancer

By HARRY C. EDWARDS | Published: APRIL 26, 2013

Earlier this week Dr. Heidi Gray, a gynecologic oncologist at SCCA, was interviewed on KIXI’s Chat With Women about the symptoms of ovarian cancer. Ovarian cancer has been long thought to be a silent killer whose symptoms are non-existent. Dr. Gray, however, points out that most women who have ovarian cancer do have symptoms, it’s just that they are “vague” and often confused with something else. In the interview Dr. Gray spells out what women should watch for and also speaks to treatment options for patients who have been diagnosed with ovarian and other gynecologic cancers. You can listen to Dr. Gray’s interview here (it’s in the “Chat With Women 04-23-13” archive—Dr. Gray’s segment starts at 32:00 minutes).

For more information about the symptoms and risk factors for ovarian cancer, see the SCCA website.

This entry was posted in Cancer Screening, General. Bookmark the permalink. Post a comment or leave a trackback: Trackback URL.

http://www.sccablog.org/2013/04/dr-heidi-gray-on-symptoms-of-ovarian-cancer/

I met Dr. Heidi Gray in October of 2009.  She has kept me alive!  My deepest gratitude to her, her nurses and staff at the SCCA and The University of Washington Medical Center.

Click below for information about a brand new clinical trial at the SCCA:

http://www.seattlecca.org/clinical-trials/gyncancer-NCT00888615.cfm

Peace and Blessings,

Servivorgirl

Presidential Proclamation -- National Ovarian Cancer Awareness Month, 2014

http://m.whitehouse.gov/the-press-office/2014/08/29/presidential-proclamation-national-ovarian-cancer-awareness-month-2014

The White House

Office of the Press Secretary   

For Immedtate Release

Presidential Proclamation National Ovarian Cancer Awareness Month, 2014

- - - - - - -

BY THE PRESIDENT OF THE UNITED STATES OF AMERICA

A PROCLAMATION

Ovarian cancer is the most deadly of all female reproductive system cancers. This year nearly 22,000 Americans will be diagnosed with this cancer, and more than 14,000 will die from it. The lives of mothers and daughters will be taken too soon, and the pain of this disease will touch too many families. During National Ovarian Cancer Awareness Month, we honor the loved ones we have lost to this disease and all those who battle it today, and we continue our work to improve care and raise awareness about ovarian cancer.

When ovarian cancer is found in its early stages, treatment is most effective and the chances for recovery are greatest. But ovarian cancer is difficult to detect early -- there is no simple and reliable way to screen for this disease, symptoms are often not clear until later stages, and most women are diagnosed without being at high risk. That is why it is important for all women to pay attention to their bodies and know what is normal for them. Women who experience unexplained changes -- including abdominal pain, pressure, and swelling -- should talk with their health care provider. To learn more about the risk factors and symptoms of ovarian cancer, Americans can visit www.Cancer.gov.

Regular health checkups increase the chance of early detection, and the Affordable Care Act expands this critical care to millions of women. Insurance companies are now required to cover well-woman visits, which provide women an opportunity to talk with their health care provider, and insurers are prohibited from charging a copayment for this service.

For the thousands of women affected by ovarian cancer, the Affordable Care Act also prohibits insurance companies from denying coverage due to a pre-existing condition, such as cancer or a family history of cancer; prevents insurers from denying participation in an approved clinical trial for any life-threatening disease; and eliminates annual and lifetime dollar limits on coverage. And as we work to ease the burden of ovarian cancer for today's patients, my Administration continues to invest in the critical research that will lead to earlier detection, improved care, and the medical breakthroughs of tomorrow.

Ovarian cancer and the hardship it brings have affected too many lives. This month, our Nation stands with everyone who has been touched by this disease, and we recognize all those committed to advancing the fight against this cancer through research, advocacy, and quality care. Together, let us renew our commitment to reducing the impact of ovarian cancer and to a future free from cancer in all its forms.

NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim September 2014 as National Ovarian Cancer Awareness Month. I call upon citizens, government agencies, organizations, health care providers, and research institutions to raise ovarian cancer awareness and continue helping Americans live longer, healthier lives. I also urge women across our country to talk to their health care providers and learn more about this disease.

IN WITNESS WHEREOF, I have hereunto set my hand this twenty-ninth day of August, in the year of our Lord two thousand fourteen, and of the Independence of the United States of America the two hundred and thirty-ninth.

BARACK OBAMA

She Is Worth It. Stop The #OvaryApathy

Many women at high risk for ovarian cancer don’t know it  (link to FHRC research)

"75% percent of those at high risk for BRCA mutations have no idea they may have increased chance of ovarian cancer, Hutch study shows".  This is an alarming report from the Fred Hutchinson Cancer Research Center.  I have labelled this "Ovary Apathy".

The lack of awareness of ovarian cancer symptoms is a major barrier to fundraising and for gaining traction towards achieving screening protocols and hopefully a cure. Breast health education programs need to include gynecological health, especially ovarian health, in order to bridge this huge gap that can lead to late stage diagnosis of ovarian cancer. I fully believe that ovarian cancer awareness organizations need to partner with other well established female health campaigns to achieve their goals.  

Unfortunately it also appears that practitioners are not using available tools to identify the symptoms of ovarian cancer.  (see B. Schlappel et.al. below)  In other words, what does your doctor do to raise your awareness of ovarian cancer symptoms?

If our practitioner is not using already available tools to monitor for symptoms of ovarian cancer how are women to become more aware of it themselves?  According to the research below, "Only 20% of respondents (practitioners) reported that they were aware of an ovarian cancer symptom index"!

Herein lies the battle, the advocacy burden, the "responsibility" issue.

Those of us with ovarian cancer see this, and we are here speaking out loud to women, and men, everywhere. The MYTH that ovarian cancer only happens to older women also diffuses any sense of urgency to educate all women, in my opinion, about this illness. We love our ovaries, we need our ovaries. We need our ovaries just as much, if not more than our beautiful boobies.  Life on earth depends on our ovaries.  http://www.innerbody.com/image_endoov/repo07-new2.html

Our doctor needs to know about the symptoms index and our doctor needs to be interested in our overall gynecological health, including risks for ovarian cancer.  Our doctor is the one with the medical degree.  Our doctor is the one who should know that PERSISTENT bloating is a symptom of ovarian cancer. Our doctor should know that constipation can be a symptom of ovarian cancer. Our doctor should know that getting full quickly can be a symptom of ovarian cancer. Our doctor should know that abdominal pain could be a symptom of ovarian cancer.

Our private time with our physician is the time to have that preciously coveted 1:1 conversation where the most personal and potentially embarrassing issues raise an educated eyebrow.  We need to work together with our doctors to achieve optimum health, but it is disappointing to me that most physicians are not using the tools available to them to help us out. 

A curious, caring and interested well educated physician is the one who orders the transvaginal ultrasound or CT Scan and CA 125 blood test. The physician does the critically important bimanual exam that physically checks the size and shape of your ovaries. We need our doctors to use the tools and be more aware as well.  We cannot do this on our own.  

The unintended consequence of what seems to be over-arching ovary apathy is that  by the time ovarian cancer is brought into the conversation, it is after ovarian cancer has spread.  A female is now facing surgery, chemo and possibly loss of life.  She is in the prime of her life, she is possibly just a child, she is a grandmother, she is single and still looking forward to having a family. She is you. She is me. She is an actress. She is a mom. She is a daughter. She is an aunt. She is a sister.  

She is worth the time and effort it takes to arm her with information about ovarian cancer so that IF she feels them, she has the power to do something.  

Peace and Blessings!

#Servivorgirl

#OvaryApathy

#ovaryapathy

#stoptheovaryapathy

............................................................
Assessment of primary care providers' current clinical practices in determining a woman's risk for ovarian cancer

B. Schlappe1, A. Schwartz2, C. Wong1, R. Luebbers1 and E. Everett1
1University of Vermont, Burlington, VT, 2University of Wisconsin, Madison, WI

Objectives: Ovarian cancer is the gynecologic cancer with the highest mortality rate, yet it is also a disease with known hereditary risk factors and, more recently, a better-defined set of symptoms in early-stage disease. The purpose of this study was to assess primary care practitioner knowledge of ovarian cancer risk factors, current usage of standardized tools, and the willingness to adopt a clinical decision rules algorithm into their daily practice regarding the identification of women who are at increased risk for ovarian cancer.

Methods: A survey was sent via email to 481 primary care practitioners using an online survey tool. Topics addressed included: history-taking practices, hereditary and symptomatic risk factors for ovarian cancer, and willingness to adopt a clinical decision rules algorithm into their daily practice regarding the identification of women who are at increased risk for ovarian cancer.

Results: Preliminary data from 79 respondents was presented at the 2013 New England Association of Gynecologic Oncologists Annual Meeting. Final data are now available from 179 practitioners (37% response rate). The demographics of those who responded are: 37% family medicine, 11% obstetrics and gynecology, 18% internal medicine, and 9% nurse practitioner/physician assistant. Only 20% of respondents reported that they were aware of an ovarian cancer symptom index. With regards to hereditary nonpolyposis colorectal cancer (HNPCC) screening, 5% of respondents knew either the Amsterdam II Criteria or the Revised Bethesda Criteria, but only 1.5% reported using either criteria in clinical practice. With regards to family history, most respondents reported rarely asking questions that specifically evaluate for an increased risk of BRCA mutation. Sixty-seven percent answered that they would be willing to use a standardized patient questionnaire, and 72% were willing to use an electronic medical record tool.

Conclusions: Primary care practitioners in our population are underutilizing available standardized tools for detecting women at risk for ovarian cancer. There also appears to be strong support from practitioners for the creation of a standardized patient history questionnaire or electronic medical record tool to aid in increasing the capture rate of these women.

Robin Williams Video: Actor Sent A Terminal Cancer Patient AMessageBefore Suicide

Robin Williams Video: Actor Sent A Terminal Cancer Patient A Message Before Suicide

www.nikkifink.com

http://www.robinwilliams.com

This is my personal tribute to our most beloved and belated champion of laughter, the great Robin Williams.  He brought life, love, laughter and hope.  He tragically took his life on August 11, 2014 with the mind and hands of one consumed by some depressive disorder that rendered him unable to move through his challenges. He had early stages of Parkinson's and openly spoke of his battles with depression, to give back and help others.

Our hearts are broken.

I have depression. And....if you watched my sweet mom talk with Kathie Lee Gifford you would hear them talk about how my mom said sometimes that she had wanted to give up.  Mom followed that up with "but somehow it doesn't last". She, like millions upon millions, have had to battle some sort of serious depression in their lifetime.  You or someone you love may be suffering.

I was told a long time ago to decrease the amount of time I watch the news. This was before cancer. I did just that the day before Robin Williams died.  The headlines were filled with unspeakable human atrocities.  The news can be unbearable sometimes.

It is very difficult for me to have radio silence.  I am a news junkie, just like mom.  I am a bit of an advocate and feel compelled to "do something" on a regular basis, if I can when others need a voice. Millions of us feel like this. Robin was definitely one of them.

Robin Williams wanted to heal the world it seems.  He did so with his humor by uplifting the hearts of soldiers and the down-trodden.  He stood up for the oppressed with his sharp tongue, poking fun at the greedy with wicked heartfelt humor.  Robin Williams cared!

Each soul on earth has the potential to enlighten one or millions of other souls.  My mom lightened a precious few and Robin enlightened millions.

When the brightest light burns out, the world seems to stop. This light moved from the earth to the heavenly stars and shines with great brilliance upon us.

So to keep your heart light and your endorphins flowing, watch a few of Robin Williams' movies.

Give yourself some laughter therapy.

May our beloved Robin Williams Rest in Peace, Amen


Please link here for a biography of Robin Williams:

http://www.biography.com/people/robin-williams-9532797

Please link here for information about laughter therapy and cancer:

http://www.cancercenter.com/treatments/laughter-therapy/

Please link here for information about suicide prevention:
http://www.suicidepreventionlifeline.org

Peace and blessings,
Servivorgirl