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Caring for the Caregiver – Kerrie’s Story

“Oh yeah, your wife has cancer and will need chemotherapy. Now I’ve got to get back in there and finish.” As the surgeon turned and walked away, my world crumbled. Everything slowed down and felt muted. I stumbled back to my seat in the hospital waiting room. A friend hugged me, and we sat in shock. My mother-in-law feverishly texted and called family members, all while saying, “I knew it. I just knew it was cancer”! But I didn’t! I didn’t know or believe that! My amazing, wonderful, healthy 38-year-old wife had a less than 2% chance of having ovarian cancer. We knew there was a mass from a CT scan, but there was a very good chance it was benign. How could this be happening? We didn’t know anything about ovarian cancer.

This was January 24th, 2019, and it would be a day that changed my life forever. Weeks after the surgery, pathology revealed that she had been diagnosed with stage 3B high-grade serous epithelial ovarian cancer AND stage 1B cervical cancer.

I knew there was no way I could help her fight and take care of her the way she deserved if I continued to work. I made the difficult decision to leave my career and focus solely on being her caretaker. From that day on, I have been by her side through everything. Through two major surgeries, 14-hour chemotherapy sessions, alternative treatments in Mexico, immunotherapy clinics in California, every doctor visit, every blood draw, every scan, every day of my life, fighting cancer with her. It’s been three and a half years, and I’d love to say she’s cancer-free. But she is not. She is in her 2nd recurrence. We are currently looking for clinical trials that may be a better and more effective treatment option. We spend a lot of time researching, reading clinical trials, and looking for anything that may help. We focus a lot on quality of life because that’s the most important thing. She feels good and looks great, and we will never stop looking for her cure.

As a caregiver, it is very important to take care of yourself too. This can be difficult because you constantly have to put someone else above yourself. You have to make the best decision for them, but it may not be the best for you. Having support from friends and family is crucial. You must have someone you can talk to. I mean, really talk to, unabashedly. You need a safe space to share your feelings, sorrows, fears, and hope. I found having monthly sessions with an energy coach most helpful for my mental health. I did not have these sessions until my wife had her 1st recurrence. I immediately noticed a difference in how I could cope with the situation even though nothing had changed.

I also try to connect with nature as often as I can. I find comfort working in my garden, taking a walk in the park, a trip to the mountains, and feeling the sunshine or the rain. It helps me to feel present. Cuddling with my dogs always makes me happy! They have been essential in keeping my spirits up. To take care of my physical body, I schedule a monthly massage. I also suffer from migraines, and being a caretaker has forced me to find a better solution to my own health issues. I can’t take care of my wife if I’m out of commission with a migraine. After suffering for almost 30 years, I found a medication that works. Combining all of these helps me be my best for her, myself, and us.

What would I like others to know about the caregiver role…… it’s the hardest thing I’ve ever done in my life. You literally wake up every day and face life or death. You make decisions that have life or death consequences. People have no idea how stressful that is and what it can do to you both mentally and physically. I never in a million years would have thought that my wife would be diagnosed with a rare cancer and that I’d be her caregiver at 41. But that’s exactly what happened.

My experience is probably different from many because I care for my young spouse. Many caretakers are caring for a parent or someone much older. You can feel helpless at times. You may feel like there’s nothing you can do. There will be dark days. There will be sorrow, immense pain, and heartbreak. But there is also strength, courage, love, and yes, even joy. We all have an unknown future. Caring for my wife with ovarian cancer just throws that in my face daily. We are forced to face it more than someone else (who isn’t battling cancer). Every day I remind myself- I will not let the fear of tomorrow steal the joy of today.

If you are new to caregiving, I would advise you to get organized. Take notes, lots of them. Your loved one will be overwhelmed. You probably will be too. But write down all your questions for the doctor, nurses, pharmacist, therapist, and anyone else you may be seeing or meeting for treatment. Make notes about medication, times, and side effects. My duties have ranged from full-time caregiving (after surgeries and chemo treatments) to something as simple as getting her supplements and medication and making appointments.

As this is now a chronic disease, her health changes, and so do my caretaker duties. When she is well, I initially found it hard to let her do things again because I felt like I should be doing them. But I learned that if she wants to do something herself and she can, I should let her. Ovarian cancer support groups can be a wealth of knowledge from people going through a similar experience and may be helpful for some people. And lastly, don’t forget about yourself. You are important too! You are the glue holding it all together. Be kind to yourself.

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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