The Seattle Great Wheel Turns Teal

The Seattle Great Wheel is a hometown favorite, not just because it's lighting displays are so colorful, but also due to the company's contribution to the Seattle community. 

After my treatment last week I went down to the Wheel, it was  pure TEAL.  As you may be aware, September is ovarian and gynecological cancer awareness month.  Being able to benefit from this beautiful display of color makes us happy. 

The folks at The Seattle Great Wheel care.

I have been exhausted and extremely scatter-brained. For example, I have actually misplaced purchased groceries three times in the last 2 months.  I am overheated all the time. My hands have not really worked well for almost a year now.

I just stumble along doing my best to make a difference.

Thank you Seattle Great Wheel. www.seattlegreatwheel.com

Please share this with 100 women.......you will make a difference.

I hope you enjoy the ride and the beautiful view.

Love,

Servivorgirl

annotations will not show when viewing from an Ipad, so sorry

Pierce Brosnan : Joining Our Forces To Disarm Ovarian Cancer

Pierce Brosnan shared with the nation a few hours ago the enormous pain and suffering he and his family endured due to ovarian cancer.  He lost both his loving wife and adoring daughter to this terrible disease.  

He stepped on stage during the Stand Up 2 Cancer Event on 09-05-14 with hopeful eyes and an urgent voice.  He brought with him a powerful message.  A message that the three most powerful non-profit organizations dedicated to ending ovarian cancer are teaming up to save lives.  

I feel confident and empowered.  I hope you feel the same.

Please watch this moving You Tube video clip and go to the OCRF website for their important press release and details about this unprecedented movement in ovarian cancer research.

I pray for his family and the souls of his dearly dearly departed wife and daughter.

Peace and Blessings,

Servivorgirl

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"Our First Ovarian Cancer Dream Team" Pierce Brosnan 09-05-14 <link>

New Stand Up To Cancer Ovarian Cancer Dream Team Announced

Ovarian Cancer Community Joins Forces to Fight Deadliest Gynecologic Cancer

A groundbreaking collaboration among three national ovarian cancer organizations was announced during the Stand Up to Cancer telecast on Friday evening, September 5th. Ovarian Cancer Research Fund (OCRF), Ovarian Cancer National Alliance (OCNA), and National Ovarian Cancer Coalition (NOCC) have teamed up with Stand Up To Cancer to fund a new Translational Research Ovarian Cancer Dream Team dedicated to piloting leading-edge ovarian cancer research that will help patients and save lives. Read the full press release here.

Ovarian Cancer Research Fund is a not-for-profit 501(c)(3) organization.© 2012 Copyright Ovarian Cancer Research Fund. All Rights Reserved

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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

Five Year Cancerversary

It is 4:00 pm Pacific Time in Seattle Washington.  I am sitting in a nice recliner at UWMC, receiving my Avastin.  I have received kudos from my oncology nurse for this milestone, a day that wows me.

Five years ago at 4:00 pm Pacific Time I was in surgery at a hospital in Sacramento.  Dr. Leiserowitz was doing a procedure called "debulking surgery" to remove ovarian tumors from my body along with tumors that had travelled and created a home throughout my pelvic, abdominal cavity and lymph system.

My mom and aunt Debbie sat anxiously in the waiting area until at least 6:00 pm for the surgeon to reveal any good news. There were 3 previous times when I was told that I could not and did not have ovarian cancer because I was too young.

Everyone was in shock.  I was angry, scared and in a rage.  My mom was so frightened and this whole ordeal took a toll on her health. This ordeal took a toll on everyone in my family.  I wish that would have been different.

The debulking surgery is the method used to systematically, with utmost precision, clean out the tissues and then have pathology properly diagnose the disease at hand.  We really did not know what would come from this surgery, pain and agony.

Mom said that the surgeon walked into the waiting room beaming with joy. He said that although the surgery was aggressive and that my cancer had metasticized throughout, there was only a tiny tumor remaining and that chemotherapy would take care of it.  He was highly encouraged and gave myself and my family great confidence.

In a sense I was optimally debulked.

Just before he put me under I told him to be aggressive and if I was going to need a "bag", so be it.  He was careful to ask this before surgery and at the time I was more hesitant, but on the day of surgery, I just knew I needed for him not to be held back in any way. It is what it is and needs to go.

I then moved to Seattle to be with family.  Mom was so gracious to allow me, at age 45, to move in with her.  I was single and had no family in Sacramento.

I thank God that mom and my sister were in Seattle.  I have been receiving excellent care from Dr. Heidi Gray, the SCCA and UWMC for my front line chemo and for my recurrence.  Dr. Gray has had to make adjustments in my treatment because my immune system was compromised even before cancer.  My recurrence was initially treated via carboplatin desensitization, then Lipodox and now Avastin.  I am tolerating the Avastin well so far and the idea is that I will remain in maintenance therapy.  I still show tumors on CT scans.

I AM ALIVE!!!

I never knew that this day would come.  Without God, family, community, my medical team, Dr. Gray, Dr. Leiserowitz and my friends and followers, I would not  be here.

How is life better?  In every way except for my mom being gone now. Had it not been for cancer I would never have been blessed to spend time living with her, having my dear sister right here and having a chance to begin a new life.  My aunt, brother, other family and friends have been here every step of the way.  My dad prays for me every day.

I pray to God and mom and St. Peregrine on a regular basis.  I am not as afraid of death, since mom died.  To be with her one day brings me joy.

I have been writing this blog about my life with ovarian cancer to help other people learn more about it but also learn more about what it is like to have ovarian cancer.

That I am here goes against the odds.

My sunny view from the window is absolutely beautiful. I am so grateful, so happy to be here.  I am always on the ready and prepared for what comes, good or bad.

I love my family with all my heart for without you I would have had nowhere to go.

My heart aches for mom and soon my sister and her family will be moving.  

Someone loving just said to me, "God is opening up a new opportunity".

I pray for all who are sick, to be healed and well.

Peace and Blessings

Servivorgirl

Power Morcellation Can Spread Hidden Tumors (considering a hysterectomy?)

The Dangers of Power Morcellation: This information is from the Recall Center about the dangers using power morcellators for hysterectomies.The link pasted below from The New York Times shares important research about the dangers of this procedure.

Ladies beware, please read.

• What is a Power Morcellator? A device used in hysterectomies to cut tissue into small pieces to be removed from the body. However, uterine cancers sometimes go undetected prior to the procedure. In these cases, the morcellator dices up and spreads unsuspected cancer inside the woman's body.
  
  
• Hysterectomy is the 2nd most common surgery among women in the United States
  
  
• By age 70, one out of three American women will have had a hysterectomy
  
  
• 90% of these surgeries are done to remove Fibroids (non-cancerous tumors found in the uterus)
  
  
• The average life span following accidental morcellation of sarcoma is only 24-36 months
  
  
• Only 15% of women who have leiomyosarcoma (LMS) that has spread (stage 4) will be alive after 5 years
  
  
• Women with sarcoma who are morcellated are about 4 times more likely to die from sarcoma than if they had not been morcellated

We have some great information about the device and it's dangers on our Power Morcellator page.

New York Times Article On Dangers Of Power Morcellation

Rivkin Center SummerRun and N.E.D. The Movie in Seattle

Seattle is soon to be hopping with events that raise money to support ovarian cancer research and F.O.R.C.E..

This post today sends you to important links that help us in this region to better support those effected by this cancer or who are threatened with possibly facing the reality of breast or ovarian cancer due to  the inheritance of a BRCA1 or BRCA2 genetic mutation.

On Sunday July 27, 2014 the Marsha Rivkin Center for Ovarian Cancer Research is hosting the SummerRun and Walk in downtown Seattle.  This is an annual event supporting a research center dedicated solely to ovarian cancer.  Please take a look at my site and see how you can help.

I am a "VIRTUAL WALKER" this year because my cancer fatigue and rheumatoid arthritis preclude me from walking at that early hour.  ;-)  I get really hot when walking too, which makes me sick....ugh.

Although a few potential jokes linger about me resting in luxury while everyone else walks, I am disappointed because it is important that we see as many people as possible on the walk.  So anything you can do to help us up here in the pacific northwest would be greatly appreciated.  This event grows stronger every year and with your help we can make it even more powerful.

Thank you.  To view my page or our team page:

SummerRun and Walk for Ovarian Cancer Research


In September, look forward to viewing an award winning screening of "N.E.D. The Movie". This is the documentary about the gynecology oncology surgeons, their awesome band and their loyal fans.  

Proceeds benefit F.O.R.C.E.  Facing Our Risk of Cancer Empowered.  I am BRCA 1 mutation positive.  Myself, along with thousands of others, are either currently facing breast or ovarian cancer or have a great risk of having one or both of these cancers in the future.  The genetic mutations increase these cancer risks.

F.O.R.C.E. helps us and those effected by this news.  I will post more about this event, the genetic mutations and F.O.R.C.E. as we get closer to the event.

F.O.R.C.E. was very helpful to me and my family when it was discovered that I have the mutation  Now we know more of what to do and when.

N.E.D. The Movie Coming to Seattle Area Soon

Peace and Blessings

Denise Archuleta  a.k.a. "Servivorgirl"

Early Detection Of Ovarian Cancer Initiated by Pelvic Exam

http://t.today.com/klgandhoda/new-pelvic-exam-guidelines-what-you-need-know-1D79871721

Meet Valisia Lekae:  She is a young beautiful star on broadway who was blessed to have had her ovarian cancer detected early.  She is seen in the segment hosted on Today with Kathie Lee Gifford and Hoda Kotb.  Valisia is now the spokeswoman for the National Ovarian Cancer Coalition and together they move forward with our cause.

http://www.valisialekae.com/www.valisialekae.com/NOCC_Spokesperson.html

The NOCC also recommends that women continue to get annual pelvic examinations. Here is a link to their news section where you can find more information about this very important issue.

http://www.ovarian.org/ovarian_cancer_news.php

I was shocked to learn of the recommendation that asymptomatic women could bypass the pelvic exam.  Some women who were asymptomatic do have ovarian cancer, and it is important to allow your gynecologist the opportunity to perform a complete medical exam.

The bimanual exams are uncomfortable, yes. But they should not be painful.  Medical exams are never fun but the discomfort of a pelvic exam is minimal compared to the agony of cancer surgery and chemotherapy.  I only say this because women still need to arm themselves with information.  You may not really know where a doctor stands on any given medical issue and unfortunately we need to constantly double check what the primary care doctors are doing.

I am looking forward to learning more about Valisia Lekae and am very excited that such a strong and beautifully talented woman is our spokesperson.

ACOG Practice Advisory on Annual Pelvic Examination Recommendations - ACOG

ACOG Practice Advisory on Annual Pelvic Examination Recommendations - ACOG

ACOG Practice Advisory on Annual Pelvic Examination Recommendations

June 30, 2014

Washington, DC — The American College of Obstetricians and Gynecologists (the College) has reviewed the recommendations from the American College of Physicians about annual pelvic examinations and continues to stand by its guidelines, which complement those released recently by the American College of Physicians.

The College’s guidelines, which were detailed in this year’s Committee Opinion on the Well-Woman Visit, acknowledge that no current scientific evidence supports or refutes an annual pelvic exam for an asymptomatic, low-risk patient, instead suggesting that the decision about whether to perform a pelvic examination be a shared decision between health care provider and patient, based on her own individual needs, requests, and preferences.

However, the College continues to firmly believe in the clinical value of pelvic examinations, through which gynecologists can recognize issues such as incontinence and sexual dysfunction. While not evidence-based, the use of pelvic exams is supported by the clinical experiences of gynecologists treating their patients. Pelvic examinations also allow gynecologists to explain a patient’s anatomy, reassure her of normalcy, and answer her specific questions, thus establishing open communication between patient and physician.

Of course, pelvic examinations represent just one part of the annual well-woman visit, which can help to identify health risks for women and which can also feature clinical breast examinations, immunizations, contraceptive care discussions, and health care counseling. Importantly, annual well-woman visits help to strengthen the patient-physician relationship.

“We continue to urge women to visit their health care providers for annual visits, which play a valuable role in patient care,” said John C. Jennings, MD, President of the College. “An annual well-woman visit can help physicians to promote healthy living and preventive care, to evaluate patients for risk factors for medical conditions, and to identify existing medical conditions, thereby opening the door for treatment. Annual well-woman visits are important for quality care of women and their continued health.”

For more information on well-woman visits, please visit www.acog.org/wellwoman.

The American College of Obstetricians and Gynecologists (The College), a 501(c)(3) organization, is the nation’s leading group of physicians providing health care for women. As a private, voluntary, nonprofit membership organization of more than 58,000 members, The College strongly advocates for quality health care for women, maintains the highest standards of clinical practice and continuing education of its members, promotes patient education, and increases awareness among its members and the public of the changing issues facing women’s health care. The American Congress of Obstetricians and Gynecologists (ACOG), a 501(c)(6) organization, is its companion organization. www.acog.org

50 YEARS AGO

I am in a complete state of awe, joy, sorrow, amazement, gratefulness and peace.  The woman at the top of this page is my beloved and dearly departed mom.  She goes by Jane.  She brought me into this world on this day 50 years ago.  It breaks my heart that she is not here today as I celebrate a milestone that I thought I would never see.

In this photo we are enjoying lunch at a little place in Ballard (Seattle).    It is called "The Barking Dog".  I remember that day so much because she was so excited to sit outside and get some warmer fresh air.  In Seattle it is not common to enjoy a meal outside because it can be chilly, even in the summer.

Once we got settled onto the patio we talked, laughed and shared a nice lunch.  These simple times with mom and other times with the people I love are what make me happy. 

I am grateful for these moments.  I am grateful for every drop of daylight. Every shimmer of moonlight. I am grateful for every conversation, meal, celebration, cup of coffee, family gathering and chance to say hello. 

I am grateful for every situation that tried my patience and gave me a chance to grow.  I am grateful for every person who made me look at myself and my life and challenge me to be better.  I am grateful for every way that I could contribute and give someone else a reason to smile too.

I am grateful for my family: mom, dad, sister, brother, nieces, nephew, aunts, uncles, grandparents, cousins, and all the wonderful friends I have made along the way. I am grateful for my doctors, nurses and support persons.  I am devoted to God.  I have stories to tell about the angels and saints. 

I also am grateful for the chance to be on the Today Show with my mom.  THAT was pretty amazing.  For my sister who rode the Seattle Great Wheel with me.  For my aunt, sister and brother, old boyfriends and Barb for literally plucking me off the ground after surgery to get me to Seattle for chemo.  For countless favors and kind gestures from others to keep me here....wow!

My sister especially gave so much of her precious time, of her heart, to be there and do what needed to be done.  All those trips to chemo, hospitals.  Plus helping with mom.  Both she and my aunt stayed with me before I moved to Seattle.  Oh and my brother drove my car to Seattle for me. 

Today I am on maintenance treatment with Avastin and starting a new regemin for my rheumatoid arthtitis, that has gone out of control.  With that I am resting up from the trauma of losing mom.  I am in a much better place than before.  I feel hopeful.  I feel like I am more on purpose.  Even though many things are changing all around me, there are things I am supposed to be doing.  I want to get them done.

I am very excited about what the future can bring. 

I was not actually planning that this post would be this way.  There is lots going on, especially with recent changes in recommendations for gynecological health care exams.  Cancer changes you and everyone around you.

I can write about all that another day.  Mom would want that, she was an activist at heart.

Today my dad called.  I spoke with my sister.  I received cards from my aunt and dad.  I have a special gift from my sister later today.  I am going to be talking with my aunt and brother today. 

Woweeeeeeee!

I am thrilled to be here to do all of this! I need nothing material.  I just want to give love and be loved.

The little video of the bees was taped at my mom's home.  She had beautiful lavendar bushes. They attracted the most amazingly large and puffy black and white bees.

Mom, until I see you again.....

Thank you God for this day today. 

Love to all.

Denise

The Eyes Have It

I was riding on top of the double decker bus, the night sky was void of stars and moon.  I had been standing on my seat when the driver took a sharp turn. I was jolted back into my seat just as a bright flash shot like lightening across the sky.  

When we pulled into the camp we were met with women and children running and screaming.  Something had crashed into the stadium fields just down the road.

I was escorted off the bus to the main lodge where I took my post as hostess.  

During this dream I am asked to decorate the main lounge with a stuffed Christmas Tree.  Wierd. I see my mom's father and he is assigned to find out what has crashed in the stadium.  He smiles gently, gives me a hug, grabs my hand then slowly fades into the background. I love you Grandpa!

Next I find myself kneeling next to another very dear relative who has been brought inside for cover.  She is out of breath, restless but somewhat elated.  I am nervous because I do not know what to do.   One of the workers assures me that I am the right person to help because she trusts me.

I am terrified because she has two irises in each eye.  She says she can see me clearly.  She repeats over and over, "I stopped the medication and everything is clear now".  She just smiles and smiles, looking wondrous and happy.

Her eyes haunt me right now.  I want to know what that means...... two irises in each eye.  

Then I wake up.  It is just after noon.  I am supposed to get my Avastin at 1:00 pm.  Late again.  Thankfully they will take me later on.   I have had the worst time with being so deep in sleep/nightmares, not able to wake up.

:-)

So to lighten the mood I am sharing a video from my friend Joe Hendricks.  He is an expert hiker. He brings us to a peaceful place apart from daily troubles.

I encourage you to visit his You Tube site.  Joe lost his sweet Heidi to breast cancer.  He is a true inspiration for me.  Thank you Joe for bringing joy.

I am home from a treatment, relaxing here with my kit kat Marilyn. Counting my blessings and praying for those in harms way.

VIDEO LINK: A Hike With Joe

http://youtu.be/cLcMeYEo6Ek

Peace and Blessings to all

Denise

aka #servivorgirl

More Research for BRCA Mutation Carriers

The latest research released by Penn Medicine further supports that much consideration needs to be done when contemplating risk reducing surgery to prevent ovarian cancer.  This information is geared towards women who have a mutation of BRCA1 or BRCA2. All women can benefit from these studies.

I am linking this article along with another article involving the relationship between the fallopian tube and ovarian cancer as well. The two articles provide an interesting perspective on how preventative surgery may be managed.  There is strong hope that removing only the fallopian tubes instead of ovaries AND fallopian tubes may be adequate protection from ovarian cancer.

In my personal opinion, had I known about my BRCA1 mutation at a younger age, and if we had this research available at that time, I may have considered just removing just my fallopian tubes in order to reduce the risk of ovarian cancer.  The premature removal of our ovaries causes dramatic changes and if we can help to avert ovarian cancer with fewer negative side effects, more women would agree to undergo risk reducing surgery.

It is exciting to see that researchers are discovering more options to help prevent ovarian cancer.

Here is a link to a proof of concept study at MD Anderson on using salpingectomy with delayed oophorectomy:

http://utm-ext01a.mdacc.tmc.edu/dept/prot/clinicaltrialswp.nsf/Index/2013-0340

http://clinicaltrials.gov/ct2/show/NCT01907789

If you are positive for one of the mutations, and have not had risk reducing surgery, please review these articles. They are meaty, but worth your time.

Thank you to my cousin for sending me this very important information from Penn Medicine!

http://www.uphs.upenn.edu/news/News_Releases/2014/05/rrso/

http://www.ajog.org/article/S0002-9378(13)00382-7/pdf

Peace and Blessings!

Denise
aka #servivorgirl

http://clinicaltrials.gov/ct2/show/NCT01907789