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Stories of Inspiration

Worry Less and Focus on the Good

By July 9, 2021July 23rd, 2021No Comments

For much of my life, I had worried about getting ovarian cancer. There was no known gene mutation in my family, but I had a number of ovarian cysts in my twenties and then needed a hysterectomy at 44 for fibroid tumors. My husband had lost his mom to ovarian cancer in 1980, and for whatever reason, I was always worried about it being my fate as well. So when I had my hysterectomy, I asked my gynecologist to take out my ovaries and fallopian tubes because of my fears. He indicated I would need them to help me get through menopause.

 

Fast forward to June of 2019. I was 54 years old. I was in Colorado with a big group of my teacher friends to celebrate the end of the school year. While there, I began noticing that I was feeling a lot of pressure when I would urinate, and it often felt difficult to hold it when I had to go. I thought that odd and decided to go to my gynecologist when I returned home. My gynecologist chalked it up to menopause and having had three babies. When I reminded him of my fear of ovarian cancer, he agreed to do a transvaginal ultrasound; I think more than anything to set my mind at ease. He also ordered routine blood work. He did not for a second suspect ovarian cancer. As I walked out of the office, he said, “You would be noticing weight gain and a swollen belly.” When my ultrasound results came back, it noted a benign cyst on my right ovary. Phew. I could rest easy that it wasn’t ovarian cancer. My bloodwork looked good, too.

 

As the summer went on, however, I started to feel a lot of pain in my ribcage and began to suffer from bouts of diarrhea and then constipation. I felt a lot of pressure in my rectum. I decided to see my internist. I shared that I was feeling a lot of pain in my ribcage, almost as if I had worked out really hard…but I hadn’t. I also shared the new symptom of rectal pain and bouts of diarrhea and constipation. I was leaving to go on a trip to Europe with my husband and grown kids and just felt concerned that something was up. He didn’t seem concerned and told me to take ibuprofen for my rib pain. He also suggested I might have IBS, but that didn’t seem likely since I was 54 at the time and had never struggled with GI issues. Off to Europe.

 

While on vacation with my family, my GI issues increased, and one day, when we rented bikes, I told my husband that my legs felt heavy and tired. I had difficulty keeping up with my family. I was growing really concerned and so perplexed. When I returned to the states, I saw my internist, who still wasn’t concerned but ordered a CT scan for the next day to take a look. He was heading out on a long vacation, and he said his colleague would be covering and would call with results. And that is when my life as I knew it came to a crashing halt. August 7th, 2019, I got the call. The radiologist noted omental caking and a small cancerous tumor on my right ovary. The internist filling in for my physician asked me to come over to the clinic so they could do a CA125 blood test. It was 960. At this point, my gynecologist, who was beyond shocked, was thinking it was primary peritoneal cancer since there really were no tumors felt during a pelvic exam and only a small tumor on my ovary.

 

My sister, who is my biggest cheerleader, began researching gynecological oncologists in our area. I was debulked on September 4th, 2019. It was three months from the beginning of my symptoms to my surgery. My omentum was loaded with tumors and removed, including my ovaries, fallopian tubes, and appendix. My organs and diaphragm were covered with implants, but there was no cancer found in my organs. I did have a 9 cm tumor pressing on my sigmoid colon, explaining all the GI issues. I ended up with a temporary ileostomy because they had to resect my colon, and the surgeon wanted to give it time to heal. I developed an ileus in the hospital and wound up with an Ng tube. I was pretty miserable. Those are hard days to revisit. My final diagnosis was stage 3C serous high-grade ovarian cancer.

 

I did 18 weekly taxol and carbo infusions from October 2019 to the end of January 2020. My CA125 was 9, and a CT indicated some areas to watch, but nothing of major concern. I learned I was BRCA negative through genetic testing, and my husband’s profile also revealed no familial gene mutations. I was relieved not to have to worry about my kids. Next up: Covid 19. Ugh. I had just spent months in my house quarantining because I was immunocompromised. I was so ready to get back out in the world, but it wasn’t meant to be. My husband, daughter, and I spent a lot of time here at the house reading, watching Netflix, taking up painting, knitting, and walking the dogs.

 

While it wasn’t ideal, I will always cherish the memories of the fun we would drum up while staying safer at home. My CA125 had fallen to 6.7 following treatment, and I was scheduled to have an ileostomy reversal in June. Following the reversal, I took a break from getting my CA125 checked because my oncologist said it would probably go up due to inflammation from the surgery. When I did finally get it checked, it was at 12. Hmm….maybe just inflammation still. A few weeks later, it was 23…then 95. I was in recurrence. Today I finished up my final chemo regimen of carbo and doxcil and will continue to receive Avastin for at least six months. I had recurred seven months out of frontline treatment, and this time, I am praying for a long remission. I am vaccinated and ready to recover from this final chemo and then get out there and travel while I can.

 

Ovarian cancer has taught me to slow down and find joy in the simplest of things. Before cancer, I always rushed around with a list of things to do for work and home a mile long. That is no longer a standard operating procedure for me. I now say no more often to commitments that feel overwhelming or that don’t align with what matters most to me. Instead, I make spending time with my husband and kids a priority. I want to make as many memories as possible with them. I love to sit in my “she shed” and read and listen to the birds. I now understand how fragile life is, and I am grateful for every day I am given.

 

I am not sure why I worried about getting ovarian cancer…that is a mystery to me. Somewhere in my soul, did I know it was my fate? Or, might my worry about it actually have played a role in causing it? I can’t say. What I can say is that if you are newly diagnosed, it is possible to have a quality life again on the other side of diagnosis and treatment. I was devastated by the phone call I received on that August afternoon, and my mind prepared for the worst, but I have to say, I have had some of the most joyful moments of my life in the midst of my journey. Hang in there! I highly recommend connecting with your local ovarian cancer community to get connected with a mentor. It is so helpful to have someone to talk to who has been there and truly understands. I have a wonderful mentor named Michelle.

Jennifer Nichols

Jenni and her husband are parents to three grown kids and one amazing daughter-in-law who bring them so much joy and laughter. They are also parents to two golden retrievers, Archie and Oakley, who are amazing therapy dogs. Jenni continues to work part-time as a Reading Specialist. She plans to volunteer at her cancer center as soon as volunteers can return!

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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

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.  

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

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