Tag Archives: ovarian cancer

5 Lessons From An Ovarian Cancer Survivor

This is a guest blog post by MyLifeLine founder, Marcia Donziger.

5-tips-ovarian-cancer

marcia-photoIn 1997 I was 27, happy, free, and traveling the world as a flight attendant. Newly married and ready to have a baby, I felt strong and invincible. My future was unfolding just as I expected it to. Until the symptoms appeared ever so subtly. Squeezing cramps around my waist. It hurt to pee. After a few weeks, I marched my invincible self into my doctor’s office, told her I diagnosed my own bladder infection, and may I please have antibiotics.

She decided to investigate a little further. After an ultrasound, she discovered a grapefruit-sized tumor growing on my left ovary. “Could it be cancer?” I asked. “No,” my doctor assured me, “you’re too young to have cancer.”

Surgery was scheduled to remove my “benign tumor.” I was excited to get it over with, so I could go on with my life and have babies. After 5 hours of surgery, I woke up in the recovery room, my body uncontrollably thrashing in pain. My doctor hovered over me and broke the news, “I’m sorry. You have ovarian cancer. You’ve had a complete hysterectomy. We took everything out.”

What I heard loud and clear was “Cancer. You can’t have children.”

The diagnosis came as a shock. Stage IIIC ovarian cancer had taken over my abdomen, resulting in an emergency hysterectomy that I was not prepared for. The intense grief hit immediately. The loss of my fertility was most crushing. I had always wanted to be a mom.

Halfway through chemo treatments, I celebrated my 28th birthday, but there wasn’t much to celebrate. My marriage was dying. Cancer puts tremendous stress on a couple. Some couples can handle it together like champs. We didn’t. We divorced 1 year from the date of my diagnosis.

After treatment ended, I looked in the mirror to see what was left. I was 28 years old, ravaged physically and emotionally, divorced, and scared to date as a woman unable to have children.

Who would love me now?

Now, almost 20 years later, I feel strong again (although not invincible).

With the benefit of time and perspective, I’ve distilled that traumatic cancer experience into 5 life lessons:

  1. Trust grandma’s reassurance, “This too shall pass.” As an ovarian cancer survivor herself, my grandma is living proof of this timeless wisdom. Stressful events don’t have to be permanent. We don’t have to be victims. Although cancer is extremely painful and unwelcome, the bright spot is we are forced to build character traits such as resiliency, emotional courage, and grit.
  2. Create your own joy in the midst of crisis. There are ways to uplift yourself during the chaos of cancer treatment. For example, I took a pottery class throughout my chemo months to find solace in distraction and art, which helped soothe my soul and ease the journey. What would make you happy? Do something just for you.
  3. Stop doing what you don’t want to do. If you were doing too much out of obligation beforehand, try to change that. You are only obligated to make yourself happy. No one else can do that for you. The key is to use this wisdom to prioritize your time and honor yourself, so you can be healthy for others. Drop what doesn’t serve you. Drop the guilt. Life will go on.
  4. Connect with others. The emotional trauma is hard to measure in a medical test, but it’s real. Anxiety and depression can go hand-in-hand after cancer–it did for me. In response to the emotional challenges I experienced, years later I founded MyLifeLine.org Cancer Foundation to ease the burden for others facing cancer. MyLifeLine.org is a cancer-specific social platform designed to connect you with your own family and friends to ease the stress, anxiety, and isolation. Gather your tribe on MyLifeLine. You are not alone.
  5. You are lovable after cancer. No matter what body parts you are missing, you deserve love just as you are. Cancer tore down my self-esteem, and it took significant effort to build it back up. I am dedicated to personal and professional growth now. Look into your heart, your mind, your spirit. Try fine-tuning your best character traits, like generosity or compassion. Never stop growing and learning. We are not defined by the body.

To wrap up my story–I learned that when one door closes, another opens. Today I am the proud, grateful mother of 11-year-old twin boys. Born with the help of a surrogate mom and an egg donor, my dream finally came true of becoming a parent. Where there is a will, there is a way. Never give up on your dreams!

Honoring National Hereditary Breast and Ovarian Cancer Week

This week marks National Hereditary Breast and Ovarian Cancer (HBOC) Week, a time to raise awareness and recognize those affected by hereditary cancer.

HBOC week transitions between Ovarian Cancer Awareness Month and Breast Cancer Awareness Month and recognizes anyone affected by hereditary breast or ovarian cancer.

Hereditary Breast and Ovarian Cancer Fast Facts

  • About 20 to 25 percent of women diagnosed with ovarian cancer have a hereditary tendency to develop the disease.
  • The lifetime ovarian cancer risk for women with a BRCA1 mutation is estimated to be between 35% and 70%.
  • Women who have one first-degree relative with ovarian cancer but no known genetic mutation still have an increased risk of developing ovarian cancer.
  • The lifetime risk of a woman who has a first degree relative with ovarian cancer is five percent (the average woman’s lifetime risk is 1.4 percent).
  • Women who have had breast cancer have an increased risk of ovarian cancer.
  • Both women and men can inherit cancer-causing gene mutations, and both men and women can pass such mutations to daughters and sons.

Additional Resources:

National Hereditary Breast and Ovarian Cancer Week

Ovarian Cancer Awareness Month: Gratitude for Cancer D-Day & Today

Melissa Bowen, Executive Director; Marcia Donziger, Founder and Chief Mission Officer; Tricia McEuen, Director of Administration

Guest Post by Marcia Donziger, our Founder and Chief Mission Officer

Did you know 1 in 71 women will be diagnosed with ovarian cancer in her lifetime?  Each September we celebrate Ovarian Cancer Month in an effort to raise awareness about the vague symptoms that precede a diagnosis.  At MyLifeLine.org, we partner with Ovarian Cancer National Alliance, Colorado Ovarian Cancer Alliance, and Sharsheret, to promote ovarian cancer education, which we believe will save lives.

But for me…. ovarian cancer means more than collaborative partnerships.  For me…. it’s personal.

As a woman diagnosed at the age of 27 with Stage IIIc ovarian cancer, I went through a dark time.  According the stats, only 22% of women live another 10 years.  Although I can’t remember what I had for breakfast yesterday, I do remember the smallest details of my Diagnosis Day (D-Day).  Today, I’m 44 and grateful for every birthday.

It was March 1997 when I was living the “normal” life of a 27-year old – newly married, just bought a house, working full-time, and traveling.  That’s when I started feeling some vague symptoms like bloating and abdominal discomfort.

I asked my doctor for antibiotics assuming I had a bladder infection.  Never in a million years would I have guessed a grapefruit-sized tumor was growing on my left ovary.

“Could it be cancer?” I asked.

“No”, my doctor said confidently. “You’re too young to have cancer.”

On March 31, 1997, I was wheeled into the pre-op room on a gurney and started on an IV.  That’s when the medical assistant came in with a clipboard.

“Sign at the bottom”, he yawned, apparently bored.  I squinted to read the small print.  “I consent it is possible…. to die…or have a hysterectomy…”

I looked up at the assistant in a panic.  DIE?  HYSTERECTOMY?  Sure, I knew there was risk in surgery to remove a benign tumor, but I hadn’t considered the possibility of a hysterectomy or death.

My doctor had told me verbatim “You’ll be back to work in a week.” These risks were never discussed.

After five hours of surgery, I woke up in the recovery room, my body uncontrollably thrashing around the gurney in pain.  I still felt as if knives were stabbing through my belly and back.

The doctor was hovering over me and matter-of-factly said, “I’m sorry.  You have Ovarian Cancer.  You’ve had a Complete Hysterectomy.”

So I lived.  But the other worst-case scenario happened, and I was devastated.  What I heard loud and clear was “Cancer. You. Can’t. Have. Children.”

My New Normal:  Ovarian Cancer spread throughout my abdomen and lymph nodes resulted in a hysterectomy.  Infertility meant experiencing intense grief and loss for the future I had dreamed of.  Six months of chemotherapy meant an endurance game of illness, and if I was lucky, recovery.

Halfway through chemo treatments, I celebrated my 28th birthday.  But there wasn’t a lot to celebrate.  My marriage was crumbling.  Cancer puts tremendous stress on a couple.  Some couples can handle it together like champs.  We didn’t.  We divorced one year from the date of my diagnosis.

There I was – 28, ravaged physically and emotionally, divorced, and dreading life in the single world, as a cancer survivor without the ability to have children.  But that’s a topic for another blog.

Ten years ago, I got married to a wonderful man.  Today my husband and I are the proud parents of twin boys – now age 8 – who were born with the help of an egg donor and surrogate mom, Katrese.  She and I became fast friends during the pregnancy, which was very healing for me.  She was even one of the founding board members of MyLifeLine.org.

Today, I feel grateful.  Grateful for that traumatic day the C-Word crashed into my life and burned up the future I’d planned.

Today, I get to rebuild my future and help MyLifeLine.org grow as the Chief Mission Officer and be an advocate on behalf of survivors and the people who love them.

Today, I get to be a Mom to 2 incredible children.

Yes, that’s right.  Today, I am grateful for the ovarian cancer diagnosis that turned my life upside down and caused me to go down a new, uncharted path.

Today, I am confident there is beauty beyond the pain and the fear.

Today, I ask you, what are you grateful for?

To learn more about ovarian cancer’s warning signs, or how to support a loved one, visit our partners:

Ovarian Cancer National Alliance

Colorado Ovarian Cancer Alliance

Sharsheret for Jewish women

 

Gratitude Campaign Badge
USC’s Gratitude Campaign

Solo Survivor, a MyLifeLine.org Member’s Story

Tracy has made it her personal mission to advocate on behalf of singles with cancer, and even has a book being published on this very topic. As a friend who read her manuscript, I am so excited about the book release and will update everyone as soon as it hits bookstores in 2013. In the meantime, be sure to subscribe to her blog listed below.

On behalf of all cancer survivors, thank you Tracy!

Marcia Donziger
Founder and Chief Mission Officer, MyLifeLine.org

Solo Survivor, a MyLifeLine.org Member Story
By Tracy Maxwell

I have been an ovarian cancer survivor for more than six years now.

Because I am a single woman, my energies have been focused on helping single survivors, providing connections for them, and writing about my own experience with the hope that it will resonate with others.

My own story began on New Year’s Day 2006 when I experienced severe abdominal pain that landed me in the ER in the middle of the night. Many tests, needle sticks and barium ingestions later, I was told I had a cyst that burst on my right ovary. “Nothing to worry about,” I was assured, but told to follow up with my gynecologist about it. That follow up led to the discovery that the cyst had returned and to many months of watching to see what it would do. Finally, surgery was deemed necessary to remove the bugger, and pathology revealed that it was cancer. More surgery and six rounds of chemo took away my summer and fall that year.

The end of treatment began a new era for me, one that included advocacy and connecting with the larger cancer community through a variety of sources.

On my one-year cancer-versary, I began a blog called A Single Cell.  Each month I would post about some aspect of being single and dealing with cancer. I was thrilled last fall when a publisher found my blog and offered to turn it into a book. I am completing final edits now and My Dance With Cancer: A Solo Survivor’s Guide to Life, Love, Health & Happiness will be released next spring.

A Note from the Colorado Ovarian Cancer Alliance

A Note from the Colorado Ovarian Cancer Alliance

September is Ovarian Cancer Awareness Month!

We need more ways to battle this disease – more research, better detection tools and better treatments.  The statistics are rough, recurrence high, which is all the more reason why information about this disease is so important for all women to know.

 

My name is Pep Torres and I’m the executive director of the Colorado Ovarian Cancer Alliance.  I lost my mom to this disease 27 years ago, back when treatment was tougher than now – no anti-nausea medication or ports.  Sadly, not a lot of advances have been made in all those years.

 

Here is the good news – there is a movement happening!  A group of smart, caring and passionate people are working diligently to shift the status quo. Researchers, gynecologic oncologists, advocacy groups and survivors and their families are all working together harder than ever.  We want to catch this disease earlier so it doesn’t come back and if it does – stop recurrences at ONE and dare I say it …………….find a cure!

 

Our time is now – we are building on hope.

 

 

Please take a moment to think about these symptoms – remember them and as you speak with others remind them to know their family’s cancer history.

  • BLOATING
  • FEELING FULL QUICKLY
  • ABDOMINAL PAIN
  • FREQUENT OR URGENT URINATION

* If you or someone you know experiences these symptoms for more than 2 weeks – please see a Gynecologist.

* Does your family have any history of ovarian or breast cancer? – if yes, please talk with a genetic counselor

Pep Torres

pep (@) colo-ovariancancer.org

www.colo-ovariancancer.org

 

 

OvarianCancerWearTealDay

Lucky – An Ovarian Cancer Survivor’s Story

Guest Post by Marcia Donziger, our Founder and Chief Mission Officer

September is Ovarian Cancer Awareness Month, which has personal meaning for me.  Here’s why.

As a 15-year survivor of Stage IIIc ovarian cancer, I am lucky.  According the data, only 22% of women live another 10 years.  Although I can’t remember what I had for breakfast yesterday, I do remember the smallest details of my diagnosis day.

It was March 1997 when I was living the “normal” life of a 27-year old – newly married, just bought a house, working full-time, and traveling.  That’s when I started feeling some vague symptoms like bloating and abdominal discomfort.

I asked my doctor for antibiotics assuming I had a bladder infection.

Never in a million years would I have guessed a grapefruit-sized tumor was growing on my left ovary.

“Could it be cancer?” I asked.

“No”, my doctor was adamant. “You’re too young to have cancer.”

On March 31, 1997, I was wheeled into the pre-op room on a gurney and started on an IV.  That’s when the medical assistant came in with a clipboard.

“Sign at the bottom”, he yawned, apparently bored.  I squinted to read the small print.  “I consent it is possible…. to die…or have a hysterectomy…”

I looked up at the assistant in a panic.  DIE?  HYSTERECTOMY?  Sure, I knew there was risk in surgery to remove a benign tumor, but I hadn’t considered the possibility of a hysterectomy or death.

My doctor had told me verbatim “You’ll be back to work in a week.” These risks were never discussed.

After five hours of surgery, I woke up in the recovery room, my body uncontrollably thrashing around the gurney in pain.  I still felt as if knives were stabbing through my belly and back.

The doctor was hovering over me and matter-of-factly said, “I’m sorry.  You have Ovarian Cancer.  You’ve had a Complete Hysterectomy.”

So I lived.  But the other worst-case scenario happened, and I was devastated.  What I heard loud and clear was “Cancer. You. Can’t. Have. Children.”

My New Normal:  Ovarian Cancer spread throughout my abdomen and lymph nodes resulted in a hysterectomy.  Infertility meant experiencing intense grief and loss for the future I had dreamed of.  Six months of chemotherapy meant an endurance game of illness, and if I was lucky, recovery.

Halfway through chemo treatments, I celebrated my 28th birthday.  But there wasn’t a lot to celebrate.  My marriage was dying.  Cancer puts tremendous stress on a couple.  Some couples can handle it together like champs.  We didn’t.  We divorced one year from the date of my diagnosis.

There I was – 28, ravaged physically and emotionally, divorced, and not looking forward to life in the single world, as a cancer survivor without the ability to have children.  But that’s a topic for another blog.

In 2003, I remarried to a wonderful man.  Today my husband and I are the proud parents of twin boys – now age 7 – who were born with the help of an anonymous egg donor and surrogate mom, Katrese.

Katrese and I became fast friends during the pregnancy, which was very healing for me. She was even one of the founding board members of MyLifeLine.org.

Today – I feel like the definition of lucky.  I get to help MyLifeLine.org grow as the Chief Mission Officer and be an advocate on behalf of survivors and the people who love them.  I get to be a Mom to 2 incredible children.  It is the hardest job – the cliché is true – but also the best job.  Without the ovarian cancer diagnosis that started my journey, I would not be so lucky.

To learn more about ovarian cancer’s warning signs, or how to support a loved one, visit our partners:

National Ovarian Cancer Alliance:

http://www.ovariancancer.org

Colorado Ovarian Cancer Alliance:

http://www.colo-ovariancancer.org/

Sharsheret for Jewish women:

http://www.sharsheret.org/

If you feel inspired, Friday September 7th is Wear Teal Day.  Help educate the women you know about the symptoms of ovarian cancer. You could save a life.

MyLifeLine.org Staff in Teal

What Are Symptoms of Ovarian Cancer?

 September is Ovarian Cancer Awareness Month. About 22,000 women will be diagnosed with ovarian cancer in 2011 and approximately 15,400 will die from ovarian cancer (source).

Symptoms of Ovarian Cancer (source):

  • Bloating
  • Pelvic or abdominal pain
  • Difficulty eating or feeling full quickly
  • Urinary symptoms (urgency or frequency)

The Ovarian Cancer National Alliance is one of our nonprofit partners. They offer many great services for patients. Check out their programs and services. Also, check out Ovarian Cancer National Alliance’s KISS and Teal Campaign http://www.avonromance.com/kissandteal/

Another notable organization devoted to ovarian cancer is the National Ovarian Cancer Coalition’s. Their mission is to raise awareness and promote education about ovarian cancer. The Coalition is committed to improving the survival rate and quality of life for women with ovarian cancer.

 National Ovarian Cancer Coalition Programs:  

    * NOCC 1-888-OVARIAN (1-888-682-7426) toll free information and help line

  * Comprehensive on-line ovarian cancer resource www.ovarian.org

    * Publication and distribution of informational literature about the disease, its symptoms andrisk factors, treatment and care issues, and community outreach to diverse populations and healthcare providers throughout the United States

    * Availability of peer-to-peer support

    * Special education and awareness projects

    * Distribution of a national newsletter circulated to a grassroots national network of women living with ovarian cancer,families, friends, healthcare professionals, physicians, NOCC Chapters, supporters and the interested public

    * Physician and health care professionals education through a Symptom Card program and Continuing Medical Education (CME) programs

    * Aggressive September Ovarian Cancer Awareness Month national public information campaign and special public awareness and education projects

Guest post on Ovarian Cancer National Alliance’s Blog

Kim, Director of Strategic Partnerships for MyLifeLine.org,  and a breast cancer survivor, wrote a guest post for the Ovarian Cancer National Alliance’s blog.  Check out the post on Ovarian Cancer National Alliance’s blog  http://bit.ly/ndmKwm

ovarian cancer national alliance logo

Unfair – poetry by a two time ovarian cancer survivor

We’re starting a new feature on our blog with poetry written by cancer patients. Here’s the first one from Lynette.

Unfair

I have cancer, he does not

Until now forever one

Common life, we plan our future

With each other all the way

Cancer comes and draws a line

Separating him and me

 

I have cancer, he does not

All the focus goes on me

I’m the patient, he the carer

Doctors, scans, reports and treatment

All about my precious health

No-one asking how he is

 

I have cancer, he does not

He’s supportive, loving, patient

But it’s thrust now in our faces

That which couples always know

But they never want to look at

Death will surely part our ways

 

I have cancer, he does not

Not for us the sweet forgetting,

of the imminence of death

Every joy and love in this life

Now accompanied by this –

One day it will be no more

 

I have cancer, he does not

Feelings now are sharp as knives

Deeper love means deeper wounding

As I cherish every moment

Every look and voice and gesture

All unutterably dear

 ———

Lynette was diagnosed with ovarian cancer in August 08, at the age of 64. She had an operation and went on chemo for 6 months. It recurred in November 2010, and she is now going through her second lot of chemo. The poetry has been written since her recurrence, and the mylifeline site has been a great chance to share it with friends and family.

If you would like to submit a poem for our blog, please email blog@mylifeline.org with your poem and a short bio.

Marcia, ovarian cancer survivor

The History Behind MyLifeLine.org Cancer Foundation

By Marcia Donziger, our Founder and Executive Director

I was 27 and thought I had a bladder infection.  Turned out to be a tumor on my right ovary.

At first, my gynecologist was not concerned.

“Could it be cancer?” I worried.

“No”, she replied, “You’re too young to have cancer.”

I was married and trying to get pregnant at the time, so I scheduled surgery immediately to get it over with.  The doctor assured me the worst that could happen is I’d lose one ovary, and still be able to have children.  She was confident the tumor was benign.

On surgery day, I was wheeled into the pre-op room.  That’s when the medical assistant approached me with a legal form to sign, agreeing to the potential of having a hysterectomy.  My doctor and I never discussed this.

Five hours later, the surgery was over, and I was in the recovery room.  My body thrashed around in pain, and I still felt knives stabbing throughout my stomach and back.

That’s when my doctor broke the news. “I’m sorry, but you have Ovarian Cancer.  We had to do a complete Hysterectomy.”

Through the pain, I heard, “You have cancer.  You can’t have children.”

The irony was that my doctor was six months pregnant.  Her belly at my eye level felt like multiple stabs in the heart.

Stage 3c Ovarian Cancer spread throughout my abdomen.  Infertility.  Followed by a bowel obstruction.  And six months of chemotherapy.

One of things I struggled with most was keeping friends and family up-to-date with what was going on.  I felt the daily burden of not communicating effectively with those I loved who were so concerned.

In 2007, I founded MyLifeLine.org to help all cancer patients and caregivers easily communicate with friends and family during the treatment process.  MyLifeLine.org Cancer Foundation believes a strong support community is critical for cancer patients.  We provide free, personal websites to cancer patients and caregivers to easily connect with family and friends, because no patient should ever feel alone. Learn more at www.mylifeline.org.

I would love to hear how an experience you’ve had with cancer inspired you to do something in the fight against cancer. Please share your comments.