CDC Symptom Diary Card

Tuesday, December 23, 2014

Happy Holidays From Servivorgirl and Merry Christmas

My sweet cat Marilyn and I are rejoicing in the miracle of our Lord Jesus Christ.  This is a bittersweet Christmas. 

My heart aches.  I miss my mom.  I am also very grateful to be alive on this day to celebrate the season of the birth of our Lord.  I love my family, friends and treatment team.

To my friends who celebrate in other ways may you be joyful and with peace this holiday season.

Seasons Greetings to all.

Love,
Servivorgirl



Wednesday, December 17, 2014

The Perfect Tree

Missing you all and needing to say that I wish I had the energy to write more often.  I am still sleeping 12 to 15 hours per day.  I had the pleasure of getting a short respite with family over the past few weeks and some interesting new things happened while I was there. 

It is worth noting that my Avastin dosage has increased because I continue to gain weight.  (The weight gain is an entirely separate post, too complex to even discuss.) Ha!  

Anyways, I was walking on the kitchen floor and heard a cracking sound in my left foot.  The popping sound that accompanied a sudden surge of pain and inability to bear weight on said foot sent me to the ER.  I had only been there an hour!  Ha.  I am now wearing a big walking boot and do have a fracture in my left foot.  

Then for two days non-stop I was bedridden with terrible nausea and an evil headache.  What???  I am  on vacation.  

We missed the local tree lighting ceremony with all the holiday extras.  I felt terrible for my aunt. Instead of us walking around the town relishing in holiday cheer she was busy taking care of me.  I love my aunt so much.  I plan to visit next year for a do-over.

Then, yes there is still more, I had to go to the ER a second time because I had unexplained chest pain, neck pain and pain with shortness of breath.  Geeeeeze leweeeeze!

They treated me as if I was having a cardiac issue or embolism.  This has never happened before.  I was panicky to say the least.  When it first happened the noise of the TV was hard to bear and I could not turn my head.  The pain along my neck was on both sides, intense and sharp.

I was given a nitroglycerin patch, IV Lorazapam and some sort of blood thinner. The ER staff and physician were incredibly polite and efficient. They drew labs for cardiac enzymes, checked my legs and chest for blood clots and admitted me for overnight observation. They drew two more enzyme labs over the course of my stay and performed a stress test on my heart. I was very impressed and am so grateful for receiving such a complete cardiac work up. 

After all of THAT, my heart is in good shape, thank you dear Lord.  

What the cause of this mysterious chest episode was, I do not know. If it happens again then I will be referred to a cardiologist, per my PCP.

So this is where we get to the "perfect tree" part.  I return from my vacation exhausted, sleep 23 hours, and sadly realize that I can't get my Christmas tree without help.

I was delighted and thankful to find two ladies who selected, transported and set up a tree for me. To honor my mom, who passed away last November, I wanted to purchase my Christmas tree from Swanson's Nursery.  Swansons was her favorite nursery, such a beautiful place.

My Christmas tree is the perfect tree.  It represents real life.  The curved trunk, uneven branches, the way it appears as if it might just topple over at any moment.  I checked, it is secured tightly to the stand. It will never look balanced and even.  My tree this year is not a calming tree. It symbolizes unexpectedness and awkwardess, sufferig and loss, yet displays beauty and joy.

My Christmas tree is telling me to stay alert.  It is also taking forever to decorate.  As I write this post I am yet to hang the ornaments I received after mom died.  The box is here, it is the last box of ornaments to hang.  

I will do that tomorrow and post a photo when I am done.

As we embrace these next few weeks of holiday joy, from all cultures and religions, I pray you find your spirit renewed.  I will be blogging soon with more Christmas cheer.....I hope.

Merry Christmas
Servivorgirl

 



Wednesday, November 26, 2014

Happy Thanksgiving


This day we give special thanks for all the goodness in our lives.  We think of those we love, those we've lost and those who are in need.  Even in our worst moments there is hope from God's love.  Never forget that you are loved.  God Bless you and your loved ones this Thanksgiving holiday.

Thank you God for this interesting and challenging life, and for all the love from my family and friends. 

Missing mom.  I love you mom.

Peace, Blessings and Love

Servivorgirl


Thursday, November 20, 2014

The Holidays In Small Doses

Ladies, I am thinking about those of you who are on your first course, or any course, of intensive chemotherapy. This time of year is an exceptionally difficult time to be experiencing side effects from surgery and treatments.  

I had spent several hours drafting a lengthy and detailed post that I was hoping could assist you in preparing for Thanksgiving.  God had other plans.  It got deleted, poof!  It must have been too long, ha! 

Do as I do, they say.  Here is the abbreviated version.

Maintain the essance of the holidays with simplicity, in every way.  Truly, keep things simple.

Mimimize expectations.  Worry not about tradition and what people think.  Trust in the people who love you. Let people help you.

Your body, mind, emotions and spirit are in turmoil.  Simplicity will help you keep your feet on the ground.

If you are a woman of faith, ask for God's help.  Ask people to pray for you.

I sigh heavily remembering how overwhelming everything felt during that first course of treatment, still in severe pain from my debulking surgery.  Experiencing the holiday season in small doses is just easier. 

I did wonder about things like how many more holidays do I have with my loved ones.  That is normal, for the most part.  Spreading out the opportunities to be with the people you love may help deflect some of that worry in your heart. 

If there is only one major event to attend, an enormous amount of pressure exists to make the most out of THAT one thing.  Instead pencil in more options for smaller manageable events here and there. If by chance you are feeling beat up on the actual celebration day, your cup will still feel full.

Well, you know what I mean.      

As the old saying goes, don't place all your eggs in one basket.  

I just want to avail myself as a sounding board.  I love this time of year.  I am so thankful and grateful for my family, friends, doctors and to God that I am here.  What else can I say?

Hugs.

Peace and blessings,
Servivorgirl










Saturday, November 15, 2014

World Vision.org and Medgift.com

Sometimes we feel like the wind gets knocked out of our sails. Yesterday was definitely one of those days.  I have been spending time preparing to honor my mom on Sunday, as it would be her birthday. November is a hard month now, the anniversary of mom's passing, mom's birthday and moving through Thanksgiving, her favorite holiday.

Lot's of grief this month.  When I saw Diem Brown had died from ovarian cancer I cried.  She was a truly spirited and cheerful warrior. My tears reflected so much loss in our family and the knowingnes of another fighter removing her gloves.

I miss my mom so much.  Sunday I will celebrate her birthday with prayer and fond memory, looking at photos.  I feel kind of crazy, but it comforts me to talk to her whilst adoring her photo.  Sometimes I just stroke the hair in mom's photo and tell her how much I love and miss her.  I tell her I am sorry for being such a bratty teenager, for not being nice all the time, for fighting with her on our trip to New Mexico, for not spending enough time with her, for being a total failure as far as career goes and for not using my brain like I should have.

I can go on and on.  I pray that she is the first angel I see in heaven one day.

I am exhausted from treatments and grief but look for colors and light throughout each day, as I have nothing to complain about. 

I am sharing two different things today that I hope will inspire you.

1.   Here is a link to an interview with Diem Brown about her heartfelt charity, Medgift.com.  A patient gift registry that eases the burden when sick and in need.

http://video.foxnews.com/v/1513484978001/reality-star-launches-patient-gift-registry/#sp=show-clips

2.  I have sponsored a child via World Vision who shares the same birthday as my mom.  This sweet child and her family are in great need and World Vision is one of only a few international charities trusted by mom.  World Vision also helps children in the United States.

I felt a little funny filtering by birthdate, but I did accept the very first child that came up in the search.  I wanted to sponsor all the kids, ya know what I mean?  

So one unique way to honor a loved ones's passing is to sponsor a child in need. It is very fulfilling and most of all provides tangible resources and goodnes that can offer hope to the suffering.


I Love You and Miss You...........

Peace and Blessings,
Servivorgirl

Rest In Peace Sweet Diem Brown

REST IN PEACE SWEET DIEM BROWN



Please select the link above for one of the many stories about this young woman's life.  Ovarian cancer may have claimed her body, but her spirit will live forever.

This news has broken many hearts today.

A star on earth is now a star in the heavens.

May we find a cure so no more women die.

Sunday, November 09, 2014

When Susan Talks, People Listen

Those of us in the world of ovarian cancer can often feel that we are in a little bubble, off to the side, having a small voice in the big world of cancer.  We are reluctant participants, not all wanting to share our stories. When we do share, we do so in different ways.  Some keep their pain and suffering close, opening up only to close friends and family.  Some unveil their agony in the way of art, music and writing. Others reveal their angst in the way of talking and reaching out in person.

I know of one such angel that can comfortably speak about her ovarian cancer and her name is Susan Malman.  She is very outgoing, high spirited and courageous.  Her chummy personality has drawn many supportive people towards her.  She has stage 4 ovarian cancer, suffers greatly, yet creates the time and energy to go out into the world and have fun.  

Seriously, this chick loves to enjoy life.  She will find a way to go out to a concert, sing karaoke or meet her friends, all the while experiencing chemotherapy side effects.  Not much can keep her down.

When she is out and about she tells people about her cancer.  Susan puts herself out there because she wants to help other women to learn about what we know today to be common symptoms of ovarian cancer.  It makes a difference.

Susan literally helped to save one woman from being diagnosed at a late stage of ovarian cancer. Had Susan not taken time to express with passion the accounts of her life and struggles with ovarian cancer, one woman may have discovered her fate too late.  God Bless you Susan.

Here are Susan's humble words......

About a month ago I had chemo and went to the gas station up the street for some ice. The girl asked me what cancer do I have and I told her ovarian stage 4. She asked what are the systems. I told her and gave her a card with the sytems on it. She told me she has all the systems. I told her don't waste time, have certain test(s) done and insist on it.

She did. A month later, I saw her tonight. With a huge line, (she) came around the corner (she) gave me a big hug, and said "thank you because of your story and making me get checked they found I have the early stages of ovarian cancer. Now I am being treated".

So now I feel so good inside that after 3 years of fighting it I helped someone and saved their life.





Thursday, October 30, 2014

St. Peregrine Pray For Us

I have prayed many times for the intercession of St. Peregrine, the Patron Saint for those ailing with cancer and other very serious illnesses.

It is exceptionally difficult to convey the depth of emotion, faith and hope in prayer via my little blog.

I have prayed to St. Peregrine for myself, for people that I love and for my cancer bearing sisters and brothers.  I believe.

One evening, after nine days of praying the Novena to St. Peregrine, I knew I was sent a message.  I was in a hospital and a physician, who went by the name of Dr. Peregrino, stepped on the elevator.  I knew his name only because a nurse called out to him just before he stepped inside. 

The doctor looked right into my eyes as if he knew me. This happened directly after receiving exciting news that someone I love did not have cancer after all, it was ruled out.  Because of the intense way this man looked at me, his name, and the feeling I had at right at that moment, I knew St. Peregrine had heard me.

A prayer to St. Peregrine
Dear St. Peregrine, I need your help. I feel so uncertain of my life right now. This serious illness makes me long for a sign of God’s love. Help me to imitate your enduring faith when you faced the challenge of cancer. Allow me to trust the Lord the way you did in this moment of distress. I want to be cured, but right now I ask God for the strength to bear the cross in my life. I seek the power to proclaim God’s presence in my life despite hardship, anguish, and fear I now experience. O glorious St. Peregrine, be an inspiration to me and petitioner of these needed graces from our loving father. 

Amen.

If you visit this website, you will see many more prayers to St. Peregrine and learn about his history.

We need LOTS of prayers, especially with respect to the cost of chemotherapy.

I just read a very disturbing article on Times.com that Genentech is unnecessarily altering its distribution channels for Avastin and two other critical cancer medications, forcing the prices to go higher. This is a prime example as to why medical care must not operate via supply and demand frame of reference. 


Peace and blessings,
Servivorgirl

Monday, October 20, 2014

Ovariancancer101.org, What A Wonderful Group

Now back to the core of the reason I started this blog, to raise awareness for ovarian cancer.  I want to introduce you to an organization started by a womderful woman who sadly lost her mom to late stage ovarian cancer.  How it was discovered will shock you.

Ovarian cancer is very tricky indeed.  Scary tricky.  Please visit this site to learn about her history and also about a beautiful treasure being promoted to raise funds.  I personally do not raise money, but periodically will write about others who do.

This Christmas tree comes with gifts!


Decorated-Christmas-Tree-And-All-The-Presents-Current-Value-$7-400-Drawing-To-Be-Held-Saturday-December-13th-@7-45pm-Tree-shown-is-our-2013-tree/p/29213750/category=0


I would love to have a beautifully decorated Teal Christmas tree in my apartment this year.  Time to buy a ticket.

Please visit  Ovarian Cancer 101.org for more information.

My next post will be about one of my favorite Saints,  Saint Peregrine.

Peace and Blessings,
Servivorgirl


Wednesday, October 15, 2014

Ebola Protocol Manual

chttp://www.voanews.com/content/ebola-september-3/2436904.html


If you are reading this post in real time you are probably aware that most hospitals in the United States are not prepared to properly treat patients with Ebola virus and congruently keep healthcare workers safe.

I cannot imagine why this is a problem.  We have had plenty of warning and there are links that provide detailed protocol on how to meticulously protect both the patient, other patients and anyone who comes into contact with the patient and patient fluids.

Here is a very detailed link that is designed for healthcare administrators to understand fully the scale of supplies, type of personal protective equipment and how to donn and doff the equipment.

Although this is written for field hospitals, our US based hospitals need to follow the core elements exaxtly as written.  It seems to me that training would be based on this kind of manual.  

That nurses and other employees at the hospital in Dallas did not have this information as part of a required training is criminal.

This link advises on two pairs of gloves!  Head to toe coverage and a separate changing area.  It is 209 pages.  There is no excuse for any hospital administrator's lack of preparedness.

We as individuals also need to take personal responsibility as well.  No matter what the situation, we must at all times be aware of personal risk and safety, either as a patient or caregiver.  We need to speak up right away and if nobody is listening, keep talking until someon does. It can literally be a matter of life or death.

People with cancer just need to be minful that it is beneficial to us to always keep protective gear on hand, especially when travelling.  Items such as masks and gloves are very important because we cannot predict when or where we will encounter a situation wherein someone else is sick.  Keep these supplies in a sealed bag, such as a ziplock bag, along with alcohol swabs and antibacterial gel.

CDC Manual     The Pdf link is at the bottom.

I hope someone finds this manual useful, as it is very thorough.

Peace and blessings,
Servivorgirl







Saturday, October 04, 2014

The Male Side Of Breast Cancer

The colors on the wheel go round and round......round and round......round and round.

Before I begin my posts for October I want to thank "Curves" of Crown Hill, in Seattle Washington.  The owner of this franchise graciously allowed me to bring in gynecological awareness handouts created by the Seattle Cancer Care Alliance.  "Curves" was hosting an open house and I had some table time with many members while distributing valuable information about gynecological cancer awareness, and my story with ovarian cancer.

We utilized the information found on the CDC "Inside Knowledge" Campaign and I am pleased to report that many women stated that this information was very helpful.  This way they not only learned about ovarian cancer, but all the major potential symptoms of gynecological cancers.

I was pleased to do this and hopefullly a few more women will be able to work more effectively with their physicians, should they have a concern in the future.  It also brought to the surface an opportunity for several women to talk about either their own or another's battle with some form of cancer.  

Thank you "Curves".  I also decided to become a member.  The program is not hard on my smaller joints (currently in a bit of trouble due to RA) and I really need the extra support.  I am finding this program comfortable, adaptable and most of all, FUN!  I will post progress, if it's good.  Ha!

Now to Men's Breast Health:

To start October off I thought it would be important to incorporate some information about hereditary breast cancer, in men.  My search landed me on a very thorough and educational article written in Medical News Today. 

Men are not likely to see themselves as potential breast cancer patients.  They can and do get breast cancer.  We can see that men all over the country do support this cause. Most men probably never considered that wearing pink can help them too.  Please share......

Quote from Medical News Today....

'It is vital for everyone to be breast aware'

"Women are encouraged to frequently check their breasts for any abnormalities, such as lumps, discharge from the nipple or changes in appearance or texture. And although many men may not be aware of it, they should do the same.
The most common signs of breast cancer in men are lumps or swelling in the breast or lymph node areas, dimpling or puckering of the skin, nipple retraction, nipple discharge and scaling or redness of the nipple or surrounding skin."


Peace and blessings,
Servivorgirl

Tuesday, September 30, 2014

Gynonc Surgeons To Rock Our World In D.C. Oct 1, 2014

I have to say that I was elated and shining from within after attending a recent showing of N.E.D. The Movie  This uplifting documentary speaks so intimately and powerfully about the wrath of ovarian cancer, as voiced by the surgeons in NED The Band.  N.E.D. stands for "no evidence of disease".  That is our goal!

I had no idea what to expect, but what I felt was a sense of pure dedication and purpose.  These highly skilled and honorable gynecological oncologists are also gifted with musicality.  They use their events and cd inserts as a vehicle to start the conversation about ovarian cancer.  Their music though is for the masses.  They are a rock band through and through!

Please link to their homepage for more about their music, their movie and their mission.
N.E.D. The Band

I want to thank Deborah Binder for hosting the event in beautiful Edmonds, WA to raise funds for

Seattle F.O.R.C.E. Facing Our Risk of Cancer Empowered  and National Hereditary Breast and Ovarian Cancer Week

Here is a note from Deborah.... "I am so glad that you were able to attend the NED movie and that you enjoyed it.

Most gyn-oncs know N.E.D. because they have played many times at the national oncology conferences around the USA.  I first heard them one year in D.C. at the National Ovarian Cancer Alliance meeting.  I know that my doc.--Dr. Goff and Dr. Muntz know them.

Last October I traveled to Portland to see the movie--a fundraiser for the Southern Washington and Oregon Ovarian Cancer Alliance.  After I saw it I knew that I wanted to do a similar event for OVCA Awareness month in 2014.  I rented the Edmonds Theater (it's where I live and I wanted to use a small hometown theatre not a megaplex) and I rented the movie from Spark Media".

Hugs,
Deborah

....................................................................
if you live in the D.C. area........

Congresswoman Debbie Wasserman Schultz is hosting a movie event in D.C. on October 1, 2014.  Please spread the word so that more money can be allocated to fight these cancers.

Capitol Hill Screening
First Street Southeast
Washington

Website  LINK
Description Representatives Debbie Wasserman Schultz & Renee Ellmers present a Congressional screening of No Evidence of Disease, featuring a live performance and panel discussion with members of N.E.D. This special event will take place on October 1st, 2014 at 6:15 PM.
Email info@sparkmedia.org


N.E.D. The Movie Screenings link


Peace and Blessings,

Servivorgirl

Thursday, September 25, 2014

Fibronectin And Our Cancer


Ovarian Cancer Dream Team Call for Ideas Now Open

su2c logo
The American Association for Cancer Research is now accepting submissions of ideas for the new Stand Up To Cancer Ovarian Cancer Translational Research Dream Team Grant that will offer up to $6 million in research funding, which includes $3 million provided by the leading funder, OCRF.
The Stand Up To Cancer-Ovarian Cancer Research Fund-Ovarian Cancer National Alliance-National Ovarian Cancer Coalition Translational Research Dream Team grant provides three years of funding for research projects that must include therapeutic interventions for ovarian cancer and deliver near-term patient benefit through investigation by a multidisciplinary, multi-institutional Dream Team of experts. Proposals for the grant must describe plans indicating how the group will use a transformative and synergistic approach, and how the work will be translated into the clinic. To maximize creativity, innovation, and collaboration, the projects should span multiple disciplines and use modern scientific tools to attack research questions in a coordinated effort.
Letters of Intent for SU2C-OCRF-OCNA-NOCC Translational Research Dream Team Grant are due by noon ET, Nov. 7, 2014, via proposalCENTRAL.
Read the full press here.
FIBRONECTIN AND CANCER
Please take a moment to link to the article below, posted by the Ovarian Cancer Research Fund.   As a non-scientist, I found it invaluable towards my understanding of how ovarian cancer cells proliferate, specifically in the omentum.  Learn about fibronectin and its role in the spreading of cancer.
Peace and blessings,
Servivorgirl



Wednesday, September 24, 2014

A Hippo Has My Campus

I grew up in Colorado.  I consider the Denver metro area fairly easy to navigate. One of my jobs after college involved daily travel, criss-crossing across town helping people regain independence after illness or injury.  I really should know the basics and major Denver area streets, even if I have been away all this time.

I always had considered myself someone who was good with directions.  I always knew where I was, even when I was in a new city or town.  I rarely got lost.  I was never afraid to drive for the sake of driving.  I used to love to get in my car and go, just see where I would be.  I could never do that now, after all of this chemotherapy....eeks.

Even after moving to California, I was still the same, had a great sense of direction and rarely got lost.  It was one of the few areas that gave me confidence, my sense of direction.

Well, my sense of direction has gone kablooey.  I am not sad and will try to remember to adapt, but I find it extremely interesting that "navigation" is such a specific area of loss for me.  I also have difficulty with estimating time.  I am always late now.......sorry everyone.

I just got back from visiting family and friends.  It was one of the best short little trips ever.  Just plain fun and it was a real treat to see everyone.  I can affirm though that I definitely am not the same confident navigator that I used to be.  I got lost 5 of the 7 times I went to meet people.

I got lost going from the airport to see my dad.  I got lost going to and from my brother's house.  I got lost going to see an old friend, where I had been before.

I got lost going to Denver International Airport.  My flight back home was after 9 pm and there I was driving around the countryside in the dark, looking for alternate routes to Pena Blvd.  Maybe next time I will get GPS.  To be honest, I was a little nervous.....and somehow it all worked out.  I barely got to DIA in time, whew.  I thought I was going to miss my plane!

I have no idea how I found the airport.  I would have called to get help after a few more minutes of driving in circles, but I am sort of concerned that this chemo brain is getting worse.  It seems that I forget what I am doing, lose track of time and get lost on a regular basis.  Maybe it is not worse, just more noticeable?

I get lost going to my dentist every time.  So strange.  

I am linking a few interesting articles on brain function and chemobrain.  It is an area of high interest for researchers and it does seem that the hippocampus, an area responsible for navigation, can be damaged by some chemotherapy agents.

I can't believe I got lost going to the airport.  Ha!  I think I should get a GPS, what do you think?


http://www.ncbi.nlm.nih.gov/pmc/articles/PMC45501/

Low Doses of Cisplatin Can Damage Hippocampus


What Happens When A Neurosurgeon Cuts Out Your Hippocampus

Love, 
Servivorgirl

Thursday, September 18, 2014

Penn Team Finds Ovarian Cancer Oncogene in "Junk DNA"

http://www.uphs.upenn.edu/news/News_Releases/2014/09/zhang/

For those of you interested in genetics, here is a fascinating article relating new findings with "junk DNA" and it's effect on BRCA genes and mutations.

I am not a scientist myself, it takes time to read.

What impresses me is that this particular type of research enables us to create a way to stop cancer if the links are proven and consistent.

There is always hope.  I thank my cousin for sending this to me from Penn State.


Peace and Blessings,
Servivorgirl






Tuesday, September 16, 2014

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



Saturday, September 06, 2014

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

su2c logo

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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Thursday, September 04, 2014

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 Diseasethrough 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 herehttps://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 wordThis 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


Tuesday, September 02, 2014

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

heidi-grayEarlier 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 ScreeningGeneral. Bookmark the permalinkPost 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

    Saturday, August 30, 2014

    Presidential Proclamation -- National Ovarian Cancer Awareness Month, 2014

    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

    Monday, August 25, 2014

    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.

    Thursday, August 21, 2014

    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:

    Please link here for information about laughter therapy and cancer:

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

    Peace and blessings,
    Servivorgirl