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

Survey Respondents Needed

Detailed Ovarian Cancer survey respondents needed!

Please help those who help.  The Ovarian Cancer National Alliance, in conjunction with Ovarian Cancer Australia and the Australia New Zealand Gynecological Oncology Group (ANZGOG), are asking women who were diagnosed with ovarian cancer at least six months ago, and received treatment, to complete a confidential survey about concerns they faced post-treatment.

This is important in order to assist in developing better treatments and interventions in the future.

The following survey should take approximately 20-30 minutes and asks about the treatment you received and the impact it had on your quality of life. All answers are confidential.

https://www.surveys.unsw.edu.au/f/158683/1409/

Thank you for your time and contribution.

PS....  I am coming up on my 5 year survival date on July 29, 2014.  I am so grateful, so humbled.

My Avastin treatment continues to chip away at my remaining tumors.   My rheumatoid arthritis is out of control, but that will hopefully get remedied soon.  Sleep ..... sleep....sleep.  Ha!

Enjoying the light and love from family and friends.  Thanking God for each new day.

Peace and blessings,

Denise Archuleta
aka  #servivorgirl

Fight To The Death "Right To Try" laws

.....as they say.  It is a fight to the death for all of us.  No matter your situation, if your life is in jeopardy you fight to the death.

I am relieved to see that Colorado has just passed legislation that allows terminal patients more options to extend their life on earth.  I cannot imagine the heart break knowing that a medication exists that could save the life of the one you love, but they can't have it.

The important thing for each of us to consider is to what length do we want others to go to in order to keep us alive.  Having an Advance Directive is important, especially if you have an illness like cancer.   It is important that your loved ones know your wishes.   It is not easy to think about, let alone write out.

http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3289 (link to information on advance directives)

Our mom, God rest her soul, took time to write it out and to articulate her wishes when it came to heroic measures.  Although she did not have cancer,  the only thing that kept us grounded during her final hours was knowing that her wishes were honored.  We are never prepared for these tragic situations. Never.

We tend to think that logic will rule, but desperation and pain take over. Sometimes the only thing that keeps loved ones on a single page is an Advance Directive. We beg God, we beg doctors, we scour the internet looking for answers that will save our loved ones.  We pray for miracles. 

Miracles may now come for some in Colorado and people can make it known that they want experimental drugs as a last resort.

Here is a link to an article about the Colorado legislation from The Huffington Post:

Right To Try    Please follow to read the article in full.

I think the naysayers have never really needed to fight tooth and nail for their own lives.  One said this jeopardizes the approval process and delays release of those experimental medications to the masses.  Well, that issue, if it is real, can be fixed because the FDA can make adjustments for this.  Paperwork, red tape, money and more money..............none of those concerns has a real pulse.

As long as an informed patient or legal guardian with a durable medical power of attorney fully understands all the risks, are willing to take the risks and absolve the drug manufacturer of liability, the patient should get their last chance for life. 

We want to swim, not sink.  When someone you love is drowning you want to throw them a lifeline.

Thank you Governor John Hickenlooper of Colorado!

Thank you for showing true compassion!

I pray that all states pass this kind of legislation..

It gives us hope.

Peace and Blessings,

Denise
aka "servivorgirl"

Link To Medical Directives by State

CANTALOUPE

I am thinking today about cantaloupes.  What?  Yes, the cantaloupe.  I love this time of year.  I love the sweet, fresh, full flavor of the cantaloupe.  Why is this important?

Several years ago I was having one heck of a time with eating.  Ever since my optimal debulking and chemotherapy treatments my digestive system has been out of whack.  This is very common for women with ovarian cancer and can cause serious and potentially life threatening conditions related to blockages.  It is very important to get our digestive health in order.

I went to a Naturopathic Doctor, on the recommendation of the survivorship program at the SCCA.  It was one of the best referrals ever made.  When it comes to digestive health, seeking out natural remedies in addition to the reliable standards (Miralax) can add quite a bit of positivity to our lives.

For some perspective:  Many chemotherapy agents cause severe nausea and abdominal pain.   The irony of taking antinausea meds is that they cause major constipation that causes more nausea. Pain medications cause constipation that causes pain in the abdomen.  

Someday this will not be the case, but it rings true for now and when on harsh chemotherapy, the battle ensues.   Unfortunately many of us never fully regain optimum digestive motility.  Over time though, we adapt and create a new way of eating and living.

My N.D. recommended taking digestive enzymes and another supplement with slippery elm.  He also recommended that I eat 3 cups of cantaloupe per day.  His suggestions truly helped to increase my motility and decrease my agony.   It was a little on the expensive side to eat this much good cantaloupe, but well worth the cost.  If only we had a garden.

Eventually I was able to eat a raw salad again, thanks to his advice.  I am very grateful for this recommendation and for the ability to eat raw vegetables.  

I am posting a few links about cantaloupe.  They include nutrition and enzymatic benefits.  You will also see important information about how to purchase, store, clean and slice them.  

***Extra caution must be taken when handling a cantaloupe, especially for those of us with a compromised immune system.***

I hope you enjoy the benefits of cantaloupe as much as I did.  Cantaloupe can be a very good fruit for people with cancer, eye disorders and other digestive disorders because it is easy to digest and filled with lots of nutrition.  

One note from the site "God's Healing Plants"

EAT THEM ALONE

"Melons are very easy to digest. This is due to their high liquid content – they are all 90% or more water. So melons digest almost immediately. They require virtually no digestive action by the stomach and pass through the digestive system very quickly; however, this can only happen if the stomach is empty. If melon is eaten with other foods that require more complex digestive action in the stomach, it can no longer pass through quickly and gets “stuck”. Even though the melon is already broken down sufficiently to pass quickly through the stomach, in effect, it gets trapped there as it must wait for the other foods to be properly digested. As the melon sits and waits in the stomach, it begins to ferment, leading to bloating, gas and other digestive issues.

Due to this fact, it is important to remember the following rule for all types of melons in order to promote healthy digestion: “Eat them alone or leave them alone.”

God's Healing Plants 

World's Healthiest Foods 

Enjoy!

Peace and Blessings

Denise Archuleta

aka "Servivorgirl"

Are Your Health Concerns Second Class?

DO YOU HAVE A BLOG OR ONLINE CAMPAIGN THAT COULD SAVE A LIFE?

If so, your ability to reach people will be severely hampered because a few companies want to control  the speed of the internet.

I watched this and now I really see how dangerous this is for everyone.  We must retain net neutrality.

http://front.moveon.org/what-happens-when-cable-companies-try-to-rip-us-off/

I try to avoid politics but this effects everyone.

Help preserve my blog and your right to equal access to information on the internet.

Teal hugs,
Denise Archuleta
#servivorgirl

Be Confident

Communicating with a medical professional about intimate details, especially anything resting within our torso below the belly button. Honestly speaking, who wants to talk about potentially embarassing issues?  Your doctor has heard it all and seen more than you pry want to know about. Challenging them by asking for help using colorful details to describe your problems may work in your favor. Who knows? I have learned, and many have agreed, that journaling our health issues helps us to share information with certainty. Looking back, it is invaluable information that could have helped my doctors better understand what my body was fighting.

Our primary job is to create the dots and let the professionals connect them. We don't always know what we are looking for, but we always know what we feel inside our bodies.  That and keeping ourselves educated can go a long way towards longevity and a better quality of life.

This post is designed to provide an overview of ovarian cancer and is a good one to share with your female friends.  Ovarian cancer is complicated, almost never on anyone's radar and does have symptoms that should drive an inquisitive and compassionate doctor to search for answers.

Over the past 3 years I have seen a rise in the number of people dedicated to raising awareness of the most common symptoms of ovarian cancer.  The most effective awareness campaign is one that reaches patients and the medical community.  

I say this because some of the most common symptoms, persistent bloating, abdominal pain, getting full quickly, frequent urinatation, along with things like unexplained constipation, severe fatigue and lower back pain may not send you to your gynecologist.  You may wind up getting a colonoscopy before you get a transvaginal ultrasound and CA 125.  

Ask your PCP to tell you everything they know about ovarian cancer.  

We desperately need a true screening test and a CURE!

Please read this very informative article:

http://documents.cancer.org/acs/groups/cid/documents/webcontent/003130-pdf.pdf

WORLD OVARIAN CANCER DAY MAY 8th

Please share this information with your friends and family.  Ovarian cancer sneeks up on women, striking often times deadly blows, but we can do something to help avert the trauma.

First, pay attention to the following:

Symptoms of ovarian cancer can often be confused with other less serious conditions such as gastrointestinal disorders. Symptoms include:

• Increased abdominal size / persistent bloating (not bloating that comes and goes)
• Difficulty eating/feeling full quickly
• Abdominal or pelvic pain
• Needing to pass urine more urgently or more frequently

Please visit the World Ovarian Cancer Day site for more information:

http://ovariancancerday.org/

More to come.

Peace and Blessings from Denise Archuleta

aka "servivorgirl"

BRCA 1 Mutations: Treat Earlier

This latest important research shown in Fred Hutchinson Cancer Research Center News

http://www.fhcrc.org/en/news/center-news/2014/02/ovary-removal-by-age-35-to-reduce-cancer-risk-.html

Ovary removal by age 35 to reduce cancer risk?

Fred Hutch researchers weigh in on new recommendation that women with BRCA1 gene mutation have ovaries removed by age 35

Feb. 26, 2014

By Linda Carroll

Women who have a mutation of the BRCA1 gene can protect against breast cancer (shown) and ovarian cancer by having their ovaries removed by age 35, a new study has shown.

Photo by Science Photo Library / via AP images

Women who’ve inherited mutations of the BRCA gene could dramatically reduce their risk of breast and ovarian cancer by having their ovaries removed by age 35, a new study suggests.
The international team of researchers who followed nearly 6,000 women with BRCA mutations for an average of 5.6 years found that preventive removal of the ovaries, called oophorectomy, reduced the risk of ovarian cancer by 80 percent and the risk of death from any cause by 77 percent, according to the study published in the Journal of Clinical Oncology.
The study also found that women with the BRCA1 mutation were at a much greater risk of ovarian cancer than those with BRCA2 mutations.
“To me, waiting to have oophorectomy until after 35 is too much of a chance to take,” said Dr. Steven Narod, a professor of medicine at the University of Toronto and the study’s lead author. “These data are so striking that we believe prophylactic oophorectomy by age 35 should become a universal standard for women with BRCA1 mutations. Women with BRCA2 mutations, on the other hand, can safely delay surgery until their 40s, since their ovarian cancer risk is not as strong.”
Narod and his colleagues followed 5,787 women with the mutations, some for as long as 16 years. At the study’s outset, 2,123 women had already had an oophorectomy. Another 1,390 received the surgery during the course of the study, while 2,274 eschewed the surgery.
For women carrying the BRCA1 gene, the researchers estimated that delaying surgery until age 40 raised the risk of being diagnosed with ovarian cancer to 4 percent, while waiting till age 50 hiked that risk to 14.2 percent. This is compared to the rate among those who had an oophorectomy before age 40: 1.5 percent.
Experts agreed that the new study underscores the importance of early oophorectomy in women carrying the BRCA1 mutation.
“Until now, our recommendations for prevention of ovarian cancer have been identical for women with BRCA1 and BRCA2 mutations. This study changes that,” said Dr. Elizabeth Swisher, medical director of the Breast and Ovarian Cancer Prevention Program at Seattle Cancer Care Alliance and a professor in the department of obstetrics and gynecology at the University of Washington. “Women with BRCA1 mutations are at higher risk of ovarian cancer in their late 30s while women with BRCA2 mutations have no appreciable risk until after age 40. Therefore, women with BRCA1 mutations should ideally have their ovaries and fallopian tubes removed by the age of 35, while women with BRCA2 mutations can safely wait until age 40.”
There are, of course, downsides to having the ovaries removed. What women find most troubling is the immediate end of childbearing and the early entrance into menopause.
“There are both medical and quality of life downsides from the early menopause,” Swisher said. “I would recommend that women take estrogen unless they have previously had breast cancer.”
‘It’s a very personal decision’
The decision is one that each individual woman has to make with her doctor, said Dr. Larissa Korde, director of the Prevention Center at Fred Hutchinson Cancer Research Center.
“Women considering this have to look at a couple of different things: the risk of ovarian cancer and how  an oophorectomy affects breast cancer risk versus how early menopause affects general health,” Korde said. “You have to consider the side effects [of early menopause] like hot flashes and vaginal dryness, and the effects on bone health and cardiovascular health.”
Earlier oophorectomy might allow some women to keep their breasts.
“If you have your ovaries out there’s a significant protective effect against breast cancer,” Korde said. “If women have not had breast cancer and their ovaries have been removed we often prescribe short term hormone replacement therapy and breast cancer screening. That’s an option some women opt for.”
Ultimately Korde said, “it’s a very personal decision. Women have to deal with what their feelings are, what they’re afraid of, what risks they’re willing to take on and what side effects they’re willing to live with.”
Read more:
To screen or not to screen? Cutting through mammography confusion

PALLIATIVE CARE: An Introduction

I have not forgotten my ovarian sisters or their families.  Our family has been grieving the loss of mom.  My life has been enmeshed with my mom's life for many years, and each moment of joy and pain is equally treasured.  We honored her life last weekend in Colorado, with family and friends from all around the region.  My sweet Aunt said that she felt uplifted at the end. My sister worked so hard on the arrangements, thank you sis.  We chose to share mom's joy, her smiles, elegance and cherished life events.  Her suffering made us stronger.  Now she rests in peace, with God.

As a person with cancer it is important to do all we can not only to learn about our cancer and treatments, but learn about resources that can assist us with our suffering. Palliative care can be an essential ingredient in the complex and everchanging recipe for our care.

My mom had the blessing of speaking with two palliative care nurses a week or so before she died.  They gave her attention, validated her integrity and spoke with and to her as a whole person. They assured her that they were THERE to ease her suffering, and she was so happy about that.

I had asked several years back if the hospital offered palliative care, and at that time they did not.  This service came to her too late, but it is not yet offered as a standard service.  It is still relatively new and if you think you need it, please ask about it.

Indirectly, I believe that mom's primary doctors were offering palliative treatments, but without defining it as such, her treatments were not coordinated. This happens far too often.

Mom suffered great abdominal pain, nausea, fatigue and emotional exhaustion from grappling with the ups and downs from multiple hospitalizations and an overall downward trend in her quality of life.  Plus a critical element, family education, really never happened.  

When an individual is deemed to have chronic pain and suffering from a serious illness, the caregivers and patient need to be on the same page.  To leave the education up to the patient places an unfair burden on them.  The patient may not want to appear needy and the palliative care team knows HOW to educate without undermining a patient's dignity.  How I wish mom had received this help earlier....

Had palliative care been introduced sooner, she may have had an overall better quality of life. Her family would have had support in supporting her better in the way mom wanted.  We all did the best we could, and every life experience is a lesson.  Mom had type 1 diabetes with all the trimmings, she suffered greatly.  In her suffering she still managed to shine a beautiful smile, joyful laugh or deep regard for her loved ones.

Cancer patients greatly benefit from palliative care.  This type of program has the purpose of enhancing quality of life by managing pain, stress and any other major issue inhibiting our ability to live as best we can with our illness. Please go to the lnk below to learn more about this treatment plan and to see if you or a loved one could benefit from this type of care.

Peace and Blessings

http://www.caregiverslibrary.org/caregivers-resources/grp-end-of-life-issues/hsgrp-hospice/hospice-vs-palliative-care-article.aspxhttp://www.getpalliativecare.org/whatis/

Mom's Obituary I LOVE YOU MOM!

I am so thankful that over the past few years a few of you have taken time to know our mom.  I miss her so much.  I never knew a heart could ache like this.  

I am pasting a link to her obituary.  One day I will see her again.

  Mom, I love you forever.  God rest your sweet soul.

Painting The Heavens

My aunt and sister did such a beautiful job of writing up mom's story, love you!

Feng Shui

I awoke today (Sunday) at 8pm.  I had slept 18 hours, basically straight through except to feed sweet Marilyn and get a glass of water. 

So contrary to the burst of energy felt a few days ago when a Fung Shui master came to my humble abode and assisted me with arranging my space to create the optimum living space for me.  One that facilitates healing, comfort, spiritual growth, family and creativity.  After she left, I felt much more capable of finishing my move.

I found the rather reasonable fee well worth it, for she saved me from making several purchases for furniture that I really don't need.  Yay.

My "stuckness" today is that I still need a piece for the TV, a TV and a pretty storage area to hold the unfinished projects from mom, photos, and my project stuff.  Plus I work part time from home and want my desk area to generate creative positive energy.  I need to finish the project, sigh.  After I am done writing, I will play with Marilyn and order my stuff.  Yes I will!

I recently moved from a very small one bedroom quiet apartment to a two bedroom in the same building.  I am totally and completely exhausted from moving mom's things, my things and now needing to finish setting up my things.  I am tired of things, to be honest.  Most definitely tired of moving.  This last move will either be number 29 or 30 for me.

But mom's things are beautiful, her pottery, art, photos, furniture and other pieces bring me comfort.  I want to honor her memory properly and display them with care.  No clutter.  No tacky arrangements.

The consultant surprised me.  She was bright, cheery, well trained, almost two decades, and just knew what to do.  I let her know I was still in treatment for ovarian cancer recurrence, mom had just passed away and that I needed help to create the ideal space.  We chatted, she was very comfortable to talk with.  Then she rolled up her sleeves and started moving things around. 

I had mom's painting and prints all lined up along with nicely framed family photos.  We spent lots of time planning the placement of each piece to be in harmony with the energy of the baqua, or life layout.

It was amazing to see how she placed each piece just perfectly and suddenly the area radiates, the piece is more vibrant and you want to be in that space.

I need a handyman to help me hang prints.  I need to still buy the storage units, media table and TV.  After that it's a matter of ongoing shredding and setting up the pottery for display.  I want to get to work on the photos project. 

I am also chronically fatigued, behind on tasks related to moving, etc.  I just am overwhelmed.  When my apartment is finished, this space will be a part of my healing as opposed to just a place to stay and pay rent.

I have always been very sensitive to my surroundings.  My mom used to sort of complain that I was too particular.  I separated my food.  Can't stand to be in dirty places or dark spaces.  I would make a terrible archeologist for example.

My mom is allowing me an opportunity to fully create this space and I am excited. 

Below I am pasting a link about cancer fatigue and also a link to Cynthia Chomos.  She really made it easier to blend my mom's belongings with my few little things into an arrangement that honors the work she did and inspires me to thrive.

I am weighted with worry because I am adding Enbrel to my arthritis treatment plan.  Basically Enbrel works by blocking Tumor Necrosis Factor to fight inflammation.  My Avastin fights to cut off blood supply to my tumors.  So Enbrel could make it easier for my tumors to flourish.  I have run out of options.  Part of my terrible fatigue could be from the bad arthritic flares that started  back in September.  I need to get my arthritis under control, and the risk to my cancer is small but there.  I just would be devastated if something went wrong.  I am tired of crying when I have to open a difficult container.  Ha

So anything we can do to create a healthy living space will help us feel better.  I have always operated that way.  Please take a moment to look at these links.  Cynthia was the exact person I needed to get me started here in this new place. 

................................................

Feng Shui

http://www.cynthiachomos.com/index.htm

Cancer Fatigue

http://www.cancer.gov/cancertopics/pdq/supportivecare/fatigue/Patient/page2

Mom in one of her gardens.