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Caring for the Caregiver – Paula’s Story

By July 15, 2022No Comments

My caregiver journey began in December 2020 when my Mom was released from the hospital in Little Rock, AR. I was there to pick her up and stopped briefly by her house, packed up some items, and then onto my home in Memphis, TN.

While healing from an ongoing bout with pneumonia, Mom discovered a lump on her right chest area. Of course, my thoughts were to call the PCP and have her examined at the earliest. After mammography screening and biopsy, this was in contrast to another testing that revealed that the tissue from her lung area did not match. The oncologist called and said it was not breast cancer but ovarian cancer, as confirmed by a senior pathologist. Fast-forward, Mom, started receiving chemotherapy last June and continues battling this silent dreadful disease.

During this process, I made it my goal to advocate and be a quick study on meds that Mom would have to undergo. It has not been easy to watch Mom undergo chemo treatments and struggle at times. She has her good days and not-so-good days. She manages to push through and has a beautiful smile that will light up any room! Mom’s faith and fighting spirit help her with her daily journey. It’s an honor and blessing to be able to be a primary caregiver for my Mom. I truly would not have it any other way to be able to care for Mom.

Leaning on my faith, family, support of sorority sisters and friends, and connecting with organizations such as CancerCare and your organization, NOCC, has provided valuable information and resources and helped us through this process. Also, I have made it a top priority to keep my health and fitness in check. I realize I can’t care for Mom if I am not well.

When it comes to caregiving, I want others to know to be patient and do things to engage your loved one. I strive to keep things as normal as possible. Having my Mom here has allowed me to rediscover my love for flower gardening. Growing up, Mom always had a love of beautiful flowers and plants. Last year, I covered my deck with all the plants she loves. One of her favorites is the Coleus species. I did make sure to continue with having blooming flowers back this year too! I think as a caregiver, it’s very paramount to keep home away from home, home. It’s a big change to be uprooted from your environment and your independence. I intentionally ensured Mom knew she was not a guest but lives here with me. I told Mom from the jump that I would take care of her no matter what.

My advice is to take things slow. Be kind, be patient. Embrace the fact that 80 percent is ATTITUDE, and 20 percent is stuff such as chemo, etc. I suggest ensuring you understand the nutritional needs of your loved one as well. This is mission-critical getting through treatments and quality of life. Mom stays connected with her home church in Little Rock through digital media platforms and still logs into conference calls for daily bible study, and this keeps her going, and because of her faith, she truly believes that her outcome is in God’s hands. I marvel at how strong and courageous Mom has been during her journey, and this strengthens me to face another day.

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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