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Stories of Inspiration

Adjusting My Sails

By May 14, 2021June 14th, 2021No Comments

As an avid sailor and lover of all things nautical, Kathy Heck alongside her husband Eric has learned that living with a diagnosis of ovarian cancer is much like being a sailor, calm seas are sometimes met with rough seas, and adjusting one’s sails is needed to stay afloat.

“I’m pleased to say I just celebrating my 6th plus year cancer-versary of living with ovarian cancer. And I celebrated my 58th birthday in March 2020. My husband and I are avid sailors and refer to our cancer journey as making “sail adjustments”. There have been many sail adjustments over the years, but we always look forward to the smoother seas that are often just past the horizon.

In December 2013, my husband and I were getting ready to live our dream. Throw the dock lines and point our sailboat south and live on our boat. We were in the process of getting our major medical tests completed to make sure we were healthy before we set sail. The last on my list was my annual gynecological visit. Unbeknownst to us, our lives would forever be changed. The tests revealed cancer cells, which sent me to a gynecological oncologist. After many more tests, blood work, and a radical hysterectomy, I was diagnosed with advanced-stage ovarian cancer at age 52. This new world was scary and unknown, but one thing I mentioned right away to my oncologist was that my mom passed away from Breast Cancer. We agreed that BRCA testing was the next step to my prognosis; which resulted in being BRCA negative. This important information has helped on several occasions with my treatment plan. Over the past 6 years, we have learned to adjust our sails and live with this disease. We enjoyed hearing the wonderful word NED after my frontline treatment and we did get to throw those dock lines off and point the bow to the Bahamas, and for 6 months Eric and I lived aboard sailing. But, we have all learned that ovarian cancer is similar to chronic disease and recurrence is often part of our journey. So we returned from the Bahamas and once again back to the chemo lounge. One of my recurrences required an echocardiogram prior to starting new chemotherapy. The echocardiogram test showed that I was born with a heart valve that was stenotic. I was now thrown into two medical worlds. I needed to be on new chemo for the recurrence, but I also needed immediate open-heart surgery to replace the valve. Boy, what a sail adjustment we were facing; but we weathered that storm; open-heart surgery was a success and 5 weeks later I returned to the chemo lounge!

I have learned to actively live with and adjust to the reality that I am living with cancer. Yes, I’ve had many forms of treatment, chemo’s, clinical trials, and PARP inhibitors. But I’ve also learned a lot about myself. I’m much stronger and more determined to enjoy life, I’ve found empowerment and inspiration in volunteering, mentoring fellow teal sisters, and being able to share my voice – it has given more purpose to my already great life. Some of us are scared, some of us struggle to see beyond the treatments, side-effects, and things we might be losing in our lives. When I boarded this ‘boat’ I decided to keep my life afloat by living life to the fullest and fight to remain positive while doing so. We lose control over many things, but we can control our attitude and outlook knowing that each impacts our quality of life and can serve to counterbalance the fears and the doubts of the medical storms. I decided to live with joy, with adventure, and with the hope that the course I charted might help fellow survivors sailing in similar storms, adjust their sails, and head towards Hope. Eric and I have continued to travel and enjoy our time on the water. In addition to bringing our friends and family together annually at the Philadelphia Together in Teal run/walk, I have spoken for the NOCC to medical students annually, took part in focus groups at research companies, hosted fundraisers at the teahouse I own, and secured respite retreats for fellow Survivors. September is important for Teal awareness, and October is especially meaningful to me, as I have honored my mother by taking part in the 3 Day Breast Cancer walk for the past 12 years. My “pink” friends now wear teal for me.

In 2014, when I was diagnosed with ovarian cancer, I never thought the day would come when we had to make the decision to stop all treatments. This past September 2020, after many months of sickness and hospital visits, I knew my body was telling me, adjust your sails once again. ‘Quality of Life’ in our final days has been our best decision. So, I made the decision to enter hospice in September. Our decision was not made by the medical team but our personal team of my family and closest of friends. I hope by showing folks that you can “live on hospice”, it takes the scariness out of hospice. Eric and I recently took a drive to the lake where he had proposed marriage many years ago. And the day after making this difficult decision, over 30 people came to our house as we did our own ‘virtual’ walk for Together in Teal in my neighborhood – using my father’s scooter decked out in teal of course! We are still living with cancer and enjoying our time together. Like my dad, Bob said during his final months, “I’ve lived a great life and when my time comes, I’ll be ready”. No matter when my time comes to say goodbye, I will adjust my sails once again.

Kathy Heck

Kathy Heck is a member of the Delaware Valley NOCC committee board and recipient of the Zena Cohen Volunteer award. She is the only recipient to receive the award twice.

 

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Stages of Ovarian Cancer

Before ovarian cancer - healthy ovaries

Stage 1 - Cancer is confined to one or both ovaries

Stage 2 - Cancer spreads within the pelvic region

Stage 3 - Average stage of diagnoses is stage 3C; cancer spreads to other body parts within the abdomen

Stage 4 - Cancer spreads beyond the abdomen to other body parts

 

National Ovarian Cancer Coalition

Stages of Ovarian Cancer

Stage 1

The cancer is confined to the ovary or fallopian tube

1A - The cancer is confined to one ovary only

1B - The cancer is found on both ovaries

1C - One or both ovaries are found with cancer cells spilling out from the ovaries

1C1 - Accidental rupture of the capsule by the surgeon during surgery

1C2 - Rupture of the capsule occurred before surgery

1C3 - Cancer cells are found in the fluid of the pelvis/abdomen

Stage 2

Growth of the cancer involves one or both ovaries with pelvic extension

2A - Extension of cancer to fallopian tubes or uterus

2B - Extension of cancer to other pelvic organs

Stage 3

Growth of the cancer involves one or both ovaries, and the cancer has spread beyond the pelvis

3A - Microscopic cancer cells found in upper abdomen or lymph nodes

3B - Visible tumor found in upper abdomen less than 2cm in size

3C - Visible tumor found in upper abdomen greater than 2cm in size, including disease on the surface of liver or spleen

Stage 4

The cancer growth is widely spread throughout the body

4A - Cancer is found in the fluid around lung

4B - Cancer is found inside the lungs, liver or spleen

National Ovarian Cancer Coalition

National Ovarian Cancer Coalition

30 Years of Courage

1991   

NOCC begins as a grassroots organization founded by advocates and survivors in Boca Raton, Florida

 1995   

NOCC incorporates as the country’s first national organization providing awareness and education about ovarian cancer.

1996   

The first national ovarian cancer information hotline is established (1-888-OVARIAN), now averaging 10,000 calls each year.

1998   

NOCC proclaims a week in September “National Ovarian Cancer Week,” with a declaration from President Clinton. “Walk for a Whisper” 5K Walk/Run is initiated.

2000   

NOCC and the ovarian community proclaim September as “National Ovarian Cancer Awareness Month.”

2002

The organization produces television PSA about early detection and distributes to 30 states.

2003

Ovarian.org received the Oncolink.com Award from OncoLink, the first online cancer resource founded by University of Pennsylvania cancer specialists.

NOCC receives the National Points of Light award in celebration of the success and impact volunteers have made in their communities.

2004

NOCC launches “Body Image/Body Essence” art exhibit by sculptor John Magnan as a tribute to his wife’s journey with ovarian cancer.

2006

NOCC launches the “Break the Silence” national education campaign.

2007

The “Break the Silence” campaign reaches 100M impressions.

NOCC helps launch the first consensus on ovarian cancer symptoms.

2008

NOCC moves its principal place of operation and state of incorporation/registration from Boca Raton, Florida to Dallas, Texas.

NOCC advocates help to double Department of Defense funding for ovarian cancer research to $20M per year.

2009

“Newly Diagnosed Patient Kit” is launched. DVD resource is made available in Spanish and Mandarin; 450,000+ pieces of literature are distributed nationwide.

2010

The Faces of Hope® program and term “Run/Walk to Break the Silence on Ovarian Cancer” are initiated. 

Annual fundraising events are branded “Run/Walk to Break the Silence on Ovarian Cancer®.”

2011

NOCC partners with The Dr. Oz Show to create his Break the Silence on Ovarian Cancer® campaign.

Over 1200 newly diagnosed women receive NOCC’s TEAL PACKET®

The “Ann Schreiber Ovarian Cancer Research Training Program of Excellence: A study by Dr. Ruth Perets” is supported by NOCC with a $50,000 contribution.

2012

NOCC supports quality of life research with the GOG 0225, LIvES Study, which is ongoing and conducted by the University of Arizona Cancer Center.

2013

More than 4,000 Faces of Hope TEAL totes are distributed.

2014

More than 575,000 pieces of education and awareness literature are distributed nationally.

NOCC affirms its commitment to research with the newest  initiative, collaborating with Stand Up to Cancer, Ovarian Cancer National Alliance, and Ovarian Cancer Research Fund to support the “Ovarian Cancer Dream Team.”

NOCC is featured in the highly coveted showcase window at 10 Rockefeller Plaza in midtown Manhattan.

2016

NOCC reaches its milestone 25th anniversary.

NOCC becomes an official charity partner for the New York Marathon and launches its first platform for endurance enthusiasts across the U.S - Team Teal®.

2017

Rejuvenate, the first event of its kind, is introduced by NOCC for survivors as a retreat experience centered around the mind, body and spirit; it later expands to a national series.

Not Knowing is Killing Us is launched as a hard-hitting national awareness campaign. 

2018  

NOCC's signature Run/Walk Series is rebranded and Together in Teal® Ending Ovarian Cancer is brought to life in communities across the nation.  

2019

Team Teal®, NOCC's endurance platform, expands internationally with participants in Greece and Canada.  

Together in Teal® Ending Ovarian Cancer is hosted at New York City's Intrepid Sea, Air & Space Museum, a national historic landmark.

2020

In response to the pandemic, NOCC introduces programming offering relief to women and their caregivers including home meal delivery, Comfort for the Soul, and online professional counseling through Comfort the Mind.  

Teal Hearts Network, a series of regional survivor support groups, commences in a virtual setting.

Together in Teal(R) hosts its first virtual experience, No Boundaries, and unites participants in 50 states and 9 countries.  

Signs and Symptoms

Ovarian cancer signs and symptoms include:

  • Feeling the need to urinate urgently or often
  • Trouble eating or feeling full quickly
  • Pelvic or abdominal pain
  • Bloating
  • Back pain
  • Upset stomach or heartburn
  • Fatigue
  • Constipation or menstrual changes
  • Pain during sex