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Stories of Inspiration

How a Teal Postcard Led Me Here

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

Up until my thirties, my only medical history consisted of having a history of ovarian cysts which even required surgery to remove them; but ovarian cancer was not in my vocabulary. When I started to spot (bleed) and have some abdominal pain, my first thought was “oh I probably have another cyst”. I guess technically, I was right. I made an appointment with my general practitioner, who referred me to my gynecologist, who then brought on a gynecological oncologist “just in case”. After ultrasounds, internal ultrasounds, and MRIs and discovering the cysts had basically spread everywhere, I was booked for surgery. Originally, my surgery was meant to be laparoscopic (small incisions with a 7-10 day recovery time), however, after my MRI it was advanced to full laparotomy, requiring a larger incision with 6 – 8-week recovery time. I was nervous.

After my surgery and a week in the hospital, my recovery was hard. Physically, emotionally, spiritually… hard. I ended up having a full hysterectomy that left my body pretty beat up. I was unable to care for myself and had to rely solely on family and my new girlfriend to help me. The smallest of actions digesting food, bathing, and walking were all painful. I won’t even tell you what going to the bathroom was like! I had always been an athlete and focused on fitness, but this wasn’t something I could just “walk off”. Understanding that I was not strong enough and had to ask for help was very difficult for me to accept, but I didn’t really have a choice.

My initial results of my tumor scan came back as “borderline”, meaning ‘not exactly’ cancer. My tumor samples were sent for further testing, so for the first few weeks of my recovery, I still didn’t know my full results. I finally got a call around week 3 or 4 that after further testing it was confirmed that I had Stage IIIC Low-Grade Serous Carcinoma. This was crushing, and even harder because I then had to call my parents and let them know. I had to say it out loud, “I had cancer”.

I soon met with my new oncology team and learned more about my diagnosis and what my choices were for treatment. Since I had low-grade cancer, my options were a little bit different in terms of care. I was told I could just wait and see if I had a recurrence or I could try chemotherapy. The current chemo treatments were not shown to be effective in treating low-grade cancer, however, was a requirement to have if I ever wanted to be considered for a potentially helpful clinical trial. Awesome, the ball was in my court for this decision. As I am not really a wait-and-see kind of person, I chose to move forward with the chemotherapy.

It was now April 2015 (just a few weeks past my 31st birthday) and I was patiently waiting for my 2nd or maybe 3rd infusion appointment when I noticed there was a postcard on the front desk that read “NOCC 5K Sept 2015”. Since my surgery, my body had gone through extreme unwanted weight loss and then followed by weight gain that I had intentionally gained so I would be strong enough for treatments. I was just starting to be able to feel strong again in my core, I could take longer walks, and even at times ride a bike. However, the chemo often reminded me that I was still in treatment. In my head, I could still move, but there were times when I would try to jog to catch a train and I would end up collapsing to the ground. After some deliberation, I decided that I was going to participate in the NOCC 5k run. Running was something I have done many times before for various fundraisers and foundations, but this one would be different. It would give me a reason to move, and reason to get stronger, and a reason to focus on something other than my cancer!

I finished my treatments in July and when September 2015 finally rolled around, I was ready. I was new to the NOCC event and was excited to see so many people wearing the teal and of course to get my t-shirt! You could feel the energy of the crowd as the race got off to a start, which gave me the boost I needed to run and cross the finish line. Being surrounded by so many people who were also affected by this disease was empowering. For this first time in a long time, I felt strong again and I have been running in that race ever since. I even managed to make it onto the top 3 survivor finishers list, which was rewarding in itself but also an amazing feeling to be able to stand next to other women who I know felt just as proud of themselves to be there.

My treatments might be over, but the medications, mental breakdowns, scans, and “new normal” adjusting continue. I started off with monthly appointments, which moved to quarterly and now every 6 months. I also get MRI scans twice a year or more if there is an issue I am concerned about. It took a little while to get used to getting in that MRI tube, but I have learned to relax (as long as I can choose the music). I take medication every day and am fully menopausal in my 30s. I have to remember that my bones are getting more brittle and to be wary of how much calcium is in my diet. It also took a few years for my hormones to settle, to get used to the hot flashes and the surprise crying, but I got there.

Since my first race, I have really become a part of the NOCC tribe to try and help spread the word about this silent disease that often gets detected too late because its symptoms are often disguised as PMS or just ignored. Over the last 5 years, I have found comfort in being part of something that is bigger than myself. Not only has it allowed me to help educate others but also to grow my own network of support. Through the NOCC I was able to participate in a lecture for medical students to understand the point of view of ovarian cancer patients, when I moved to another state, I had the NOCC Cancer Connect resource to help me feel confident in choosing a new care team, and during the pandemic joined the virtual Teal Hearts peer to peer support sessions where survivors had a place to know they were not alone.

I don’t like to say that I am in remission or that I beat cancer; to me, I was never in a fight, I was just in treatment. Even saying ‘survivor’ feels a little strange because to me it’s ongoing, I am living with this diagnosis. Each year, I make the drive back to Philly (well pre-covid times) to remind myself that I am not alone and to reconnect with the people that I ran alongside when I started this journey. With the help of that teal postcard, I can stay motivated, live with a larger purpose, and hopefully help other women that have been affected by ovarian cancer.

Tiffany Stout

Tiff lives in Richmond, VA with her wife Beth, and their cat Luna, and dog Bert. Tiff loves the outdoors and during the pandemic has been exploring national parks, finding new bike trails, and trains to improve her prior-year NOCC 5k race time. Tiff proudly placed as the first female overall finisher in the 2020 virtual 5k!

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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