Grateful for Ten million , five hundred and ninteen thousand, two hundred minutes

The song, Seasons of Love from the Broadway show, RENT is a favorite of mine. 

"Five hundred twenty-five thousand six hundred minutes.
Five hundred twenty-five thousand moments so dear.
five hundred twenty-five thousand six hundred minutes.
How do you measure,
Measure a year?"

For this year's Cancerversary the verse might read...

"Ten million , five hundred and nineteen thousand, two hundred minutes.

Ten million , five hundred and nineteen thousand, two hundred moments so dear.

Ten million , five hundred and nineteen thousand, two hundred minutes. 

How do you measure, 

twenty years?"

Here's how I would measure the past twenty years. 

It all started counting on July 29, 2005.  I woke up from surgery and heard Dr Rodriguez, my gynecologic oncologist say to me " I am sorry Dee, you have stage 3B ovarian cancer. I will do everything I can to make you well. " My plans for my future changed in an instant on hearing those words. 

Those early months included a phase 1 clinical trial,  nine cycles of chemotherapy, fatigue, neuropathy, loosing my hair and so many blood tests and scans. My chemo schedule took over my life. I never knew if low blood counts would cause chemo to be postponed and how that would impact time with family and friends.   I missed out on many family gatherings.  I worried if I would survive a year, let alone five years. (Only 30% of women diagnosed with late stage ovarian cancer live five years. ) I was thrilled when I was able to attend my niece's wedding in May of 2006.   I finished treatment disease free with the help of my wonderful gynecologic  oncologists, Drs. Rodriguez and Gibbon and the caring nurses and staff at Rutgers Cancer Institute. My family and friends were there every step of the way. 

In 2006, Dr. Gibbon set me on the path of ovarian cancer advocacy by suggesting I attend the LiveStrong Survivors Summit in the Fall of  2006.  I came back with a plan to start a gyn cancer survivors support group at my cancer center , started writing this blog and began volunteering with a local non-profit , Kaleidoscope of Hope Ovarian Cancer Foundation to raise funds for research and awareness of the disease. 

Hanging teal ribbons at the Cancer Center

I went back to my high school teaching job. I was happy to work at a school where I had the support of the administration and  fellow staff members during my treatment and on my return.  

After missing so many family gatherings during treatment, the next  two and a half years included many wonderful times.  We visited my son in Switzerland where he spent his Junior year abroad. There were also graduation celebrations including my son graduating college, my daughter graduating with her masters degree and latter that May she was married.

At the two year mark my follow-up plan was to have a CT scan , CA-125 blood test and check-up every 6 months. In late 2008, a follow-up CT scan, showed a recurrence on my liver and spleen even though my CA-125 was normal at 17. At the time, I was upset knowing I would once again be disrupting the family schedule and plans with my treatments. But I also felt somewhat at ease since I was familiar with the cancer center nurses and staff and knew the side effects of taking carboplatin and taxol.  I decided to have surgery to remove my spleen and resection my liver in November followed by 6 rounds of carboplatin and taxol chemotherapy starting in January. I experienced one stumbling block though during chemo.  On my second chemo (eleventh chemo overall) I had a severe allergic reaction to carboplatin where I ended up in the hospital and had a Cardiac catheterization.  Thankfully my heart was functioning properly.  I finished the last four chemo cycles with taxol only even though it caused an increase in the neuropathy in my toes and led to toe nail loss.  In the spring of 2009, I was disease free once again. My husband and I celebrated by going on a cruise to Alaska with our Rutgers Football tailgating friends. 

As time progressed, I wondered when my CA-125 would rise to 35 , a signal my cancer may have returned or when a CT scan  would show a recurrence. I stressed at every scan and follow-up oncology appointment.Scanxiety is real!  Many survivors talk about finding a new normal. For me I think of it as a different normal. 

Being diagnosed with ovarian cancer and being in treatment was hard, scary and physically challenging. My faith helped me through so many rough patches as did so many of the survivors I met online especially those ladies on the ACOR listserve.  I won't say having cancer was good or a blessing. Rather my cancer diagnosis lead me to travel down a different path that of cancer research advocate.

 

 

Connections to other LiveStrong advocates led me to the Research Advocacy Network and MedX. A friend started #bcsm ( Breast Cancer Social Media) on Twitter ( now X). I met Christina Lizaso , an ovarian cancer advocate on a #bcsm chat about fear of recurrence and together we started the #gyncsm ( Gyn Cancer Social media ) chat and community on Twitter. We offered support, shared information and connected cancer survivors, caregivers and gyn oncs, researchers and other health care providers during chats.  Interacting and working with some of the top ovarian cancer gyn oncs on Twitter/X opened doors I didn't know patients or survivors could open. The #gyncsm community partnered with researchers and published papers on the needs of women with ovarian cancer,  gynecologic cancer caregiver support services and the needs and perspectives when considering PARP inhibitors. I provided the patient voice for two editions of a book I co-authored with Dr Don Dizon. I became an ASCO ( American Society of Clinical Oncology) member and served on the clinical practice guideline committee as well as on three ASCO guideline panels (Anti-emetics, Neoadjuvant Chemotherapy for OC and Germline and Somatic testing). I joined SGO and served on their Communication Committee. Some of the best moments in my advocacy work was presenting at two ASCO Annual meetings (a Fireside chat and a Social Media as an Educational Tool presentation) and working with other advocates on two abstracts accepted for presentation at the SGO Annual meetings in 2023 and 2024. 

After my Fireside Chat presentation with Dr Dickson at ASCO 2019.

 

Since my recurrence, I have been able to be a part of so many joyful and fun events.   I shared the joy of the birth of my two grandsons, my son's wedding and when he was awarded his PhD. My children led me to travel more too. I visited Australia with my son when he gave a presentation there and flew to Fiji to visit my daughter when she lived there with her family. 

In 2010 we welcomed Amber a mixed breed dog into our home. Her high energy level lead to our participation in dog Agility. It was a sport I knew nothing about but it has lead to amazing friendships. 

As you can see from reading this post that I have been blessed to measure twenty years. 

Today, July 29, 2025 I am most grateful for the compassionate, excellent care provided by my gynecologic  oncologists and their nurses, the love and support of my husband, my children, their spouses and grandsons and the prayers and support of my friends. 

Dee 

Every Day is a Blessing.  

A Teal Sister's Story - Pieces of Me, Perfectly Imperfect

I have know Kimberly Simmons-Emory for over 10 years. She is a fellow ovarian cancer survivor and amazing advocate. We met in person in 2017 and I knew she had a strong faith, loved her family and  generously gave of herself supporting other women through the Georgia Ovarian Cancer Alliance.  Recently, she published her memoir, Pieces of Me Perfectly Imperfect .

 

In her book, she shares details about her adoption, how she met her husband, found and met her sisters and faced the loss of people she loved. She poignantly shared what it felt like to be diagnosed with ovarian cancer at a young age and the friendships she formed with fellow survivors as a cancer survivor.  She highlighted her friendship with Benita, an ovarian cancer survivor. I smiled to myself as I read that section because I was blessed to have met Benita in person during a visit to Atlanta for a survivorship conference.  Kimberly did a marvelous job describing the caring Benita I knew.

I don't often read a book and underline sentences that touch me but if you picked up my autographed copy of the book you will find many underlined sections.  I hope these quotes will entice you to read  Pieces of Me Perfectly Imperfect.

"The requirement to love, protect, and guide is for the adoptive parents, other family members have a choice. In my case, I cannot recall being recognized as the "adopted" daughter ; I was Dot and Mitchell's daughter."

"We have well played tunes in our heart that make us dance to the beat, but we are occasionally interrupted because life plays its own songs."

"Sometimes we have been too hard on ourselves...We decline to see ourselves through God's eyes ...God abstracts the good, bad and ugly parts of our lives and renders every part good. "

"Change can not be controlled, but holding on to control can be changed."

"Love yields gratitude and forgiveness."

So you see this book was more than just Kim's story it offered glimpses of her faith, thoughts, emotions and advice. You will find the broken pieces of her life as well as the joys. You will see challenges, support and love. At the the back of the book you will find the  Treasured Traditions section, a place where Kimberly shares family recipes. I can't wait to try Thelma's Glorious Lemon Pound Cake.

On the book's website , Kimberly writes "I pray you will reevaluate those moments that crushed you and find beauty, courage, strength, and peace within the pieces". I hope everyone, not just cancer survivors will read this book and find the value in it that I did. 

Happy Birthday Kim and thank you for sharing yourself with all of us. 

Every Day is a Blessing!

Dee

The Threads of My Life

Graceful Hope was started by the Rocha family. Grace Rocha and her daughter Erika were both diagnosed with ovarian cancer and treated at Rutgers Cancer Institute of New Jersey,  were I was treated. Sadly Grace passed away in 2008 and Erika, initially diagnosed at the age of 16,  passed away in 2011.

I first met the Rocha family in 2012 when they asked me to share my survivor story at the 2nd Benefit. This past weekend I was once again honored to speak at the 5th Annual Graceful Hope Benefit for Ovarian Cancer Research. This year the funds raised were being presented to Rutgers Cancer Institute of NJ.

Here are portions of my speech - The Threads of My Life.

Speaking at the Graceful Hope 5th Annual Benefit

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Some survivors say Cancer is a Gift others say it most definitely is not. For me I think of Cancer as a thread in the fabric of my life and over the past 12 years many new threads have been added.

Graceful Hope has became a thread in that fabric starting in 2012 when I had the privilege of sharing my story with many of you. 
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In the late spring of 2005 I went to the ER for intense pain on the left side of my abdomen. That led to a series of tests and a referral to Dr Rodriguez at RCINJ. I woke up from surgery on July 29^th to learn I had stage 3b epithelial ovarian cancer. I can still remember the words Dr. Rodriguez said to me as she left the recovery room - “ I will do everything I can to make you well.”  She offered me hope as I joined the almost 700 women who would be diagnosed in NJ that year.

She also offered me a phase 1 clinical trial of standard chemo along with selenium which I decided participated in. Nine cycles and 7 months later I was told I was disease free. The thread as survivor added to my fabric.

As my hair grew in and I became stronger I went to follow-up visits at CINJ.  I heard about the LiveSTRONG  Survivors Summit in Austin , Tx . Attending that summit weaved another thread in my story that of being an advocate.  It was an incredibly empowering experience and laid the groundwork for my involvement in a number of organizations, educating about symptoms and blogging .

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Life slowly returned to a new normal. I went back to work. I watched my son graduate college, my daughter receive her graduate degree and marry in May 2008.

In Oct that year, after a routine CT scan Dr. Rodriguez called me to say that my cancer had returned in two spots one on my liver the other on my spleen. This time I knew a lot more about ovarian cancer so I looked at the three treatment options I was offered and decided I would have surgery first – which included removing my spleen and resectioning my liver - and then six chemotherapy treatments. In the spring of 2009, I heard there was no evidence of disease.

I’ve gone back to yet another new normal, which includes spending time with family which grew by  two grandsons and a daughter-in-law , dog agility, and of course advocacy. I feel I have a responsibility to all the women diagnosed with ovarian cancer who are no longer with us to be their voice and to speak up for the needs of women dx with the disease. Since my recurrence a major portion of my time is spent on research advocacy work and supporting other survivors.

In 2013, along with another ovarian cancer advocate I cofounded the Gynecologic Cancer Social Media Community on Twitter which we call #gyncsm. And another thread was added to my life. Along with our co-moderators, three  gynecologic oncologists and a psychologist,  we hold monthly chats on topics of interest to those impacted by gyn cancers. Because of my work with gyncsm I’ve had the amazing opportunity to attended the Am Society of Clinical oncology Annual Meetings and became an advocate member of the society ...

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There are times the neuropathy in my toes bothers me.  Chemo brain frustrates me. And I still get anxious waiting for test results.  But the threads of my life have including many blessings. I’ve had the opportunity to meet amazing women diagnosed with ovarian cancer like Tina, Dawn and Terry.

In the past almost 12 years I have seen progress for women with ovarian cancer – new medicines, targeted therapies, IP chemo, recommendations that women with OC to receive genetic testing, research into immunotherapy and circulating DNA. And it is survivors, caregivers and friends  like you – those passionate about raising awareness and finding a cure that are helping make a difference. 

It is wonderful to be here as you celebrate your 5^th event. The Graceful Hope family has weaved their thread into my life and my heart. Thank you.

Dee
Every Day is a Blessing!

A Weekend of Butterflies and Lipstick

This past weekend was great one for survivors in NJ.  The weather was great and the feeling of connectedness to other cancer survivors was strong.

Saturday:
 I attended the Wings of Hope event in honor of National Cancer Survivors Day at the Cancer Support Community-  Central New Jersey in Bedminster. I have participated in CSC-CNJ programs since 2006. The day began with a Walk for Hope.  Origami butterflies purchased to honor or in memory of a loved one diagnosed with cancer were displayed on sheer curtains There were tables of crafts for children, a drumming circle, a basket auction and lots of water and Rita's ice. The sun was bright and the temperatures were in the 80's.

I was thrilled that my two good friends and ovarian cancer survivors Carole Fagella and Lynn Franklin received this year's Spirit of Courage Award for their work as advocates raising awareness of ovarian cancer. Congratulations Carole and Lynn!

Spirit of Courage awardees

Sunday:
The Cancer Institute of NJ's National Cancer Survivors Day Celebration took place at the Hyatt Regency in New Brunswick on Sunday morning.

I was so excited to see so many survivors in the ballroom. And was thrilled that so many oncology nurses and social workers came to celebrate with us.  The event began with a delicious buffet meal and a welcome by the Director of Oncology Nursing Services Janet Gordis-Perez. She introduced the keynote speaker Geralyn Lucas. ( Check out Geralyn's video about getting a mammogram .)

Geralyn Lucas

Geralyn is a seventeen year breast cancer survivor and author of the book Why I Wore Lipstick to my Mastectomy. She told us how she found her "inner cleavage" and described the interaction she had with her cab driver on the way to her mastectomy. She made us laugh and she made us tear up when she invited other breast cancer survivors up to the stage to put on lipstick and share how they celebrate life.

I think this was my forth or fifth time at the CINJ Survivors Day celebration. And the first one where i felt a bit sad at the end.  Last year the ladies from my support group and their caregivers filled a table.This year it was Nick and I and one other ovarian cancer survivor.  I sure do miss Pam, Rita Kay and Ann.

Dee
Every Day is a Blessing!

What Words Do You Use?

The other day someone asked me "Do you have cancer or have you had cancer?" I answered "I had cancer because I have no evidence of disease right now but... I know it can come back at any time. I can go back to having cancer."  I don't particularly like having to qualify my statement but that is just the way it is to be a woman who had ovarian cancer. And there are women throughout the country dealing with the same question. The NCI on it's SEER webpage says "On January 1, 2009, in the United States there were approximately 182,758 women alive who had a history of cancer of the ovary. This includes any person alive on January 1, 2009 who had been diagnosed with cancer of the ovary at any point prior to January 1, 2009 "

That question got me to thinking about the terms I use to talk about my journey with cancer.

I call myself a cancer survivor. I have some friends who also call themselves survivors. They take on the title as a honor. In other words, they have been there, done that and they are still here.  I have other friends who shy away from that term. Some because they are still in treatment ,others because they only had surgery and not chemotherapy or radiation and some just want to put the cancer behind them.

I have said I kicked cancer's *ss - twice which denotes I had a fight with it. I have also said I have battled ovarian cancer for 7 years. I know people who despise the use of war terms when it comes to dealing with their cancer. I think of it in those terms because I have not been able to find another term which denotes studying the situation, pulling together my resources ( doctors, treatments and family/ friend support) , deciding on a plan and then overcoming a danger that is a threat to my life. I don't care that the threat is not an external threat but an internal one. I don't care that the treatment is no longer on my front lines any more. But I continue to deal with the side effects of the battle and must stay prepared to fight by doing follow-up blood tests and scans. I still deal with  emotional issues knowing it can come back. It feels like I have a cloud over my head. Right now while I have no evidence of disease it isn't raining. I deal with cognitive issues which has slowed down how I process information . I need to write things down or I will forget to do things or I will just  totally miss things I am supposed to be doing. I still deal with neuropathy issues and have been trying a number of  non-prescription ways to deal with it. So yes I am still in the battle.

I have never said  I have been cured.  Nope not even back in 2006 before I recurred. My doctors say I am living with a chronic illness which might "flare up" at any time.  For me this disease makes me feel a bit like Eeyore-  I have a cancer cloud over my head . It might not be raining now but it could in the future. What do I do about that cloud? I get involved in things that are not cancer related. I paint , I read, I take my dog to agility classes.

Let's get back to my journey. One of the definitions of journey is "the passage or progress from one stage to another."And that what my experience with cancer has been like . I've progressed from that newly diagnosed patient, through the patient in treatment , to the patient trying to find her new normal, to the patient who has a recurrence, to the patient in treatment again , to the patient once again trying to get back to normal. For me at least,  normal is the constantly changing terrain of being a person who was diagnosed with ovarian cancer .

What words do you use to describe your experience with ovarian cancer?

Dee
Every Day is a Blessing!

In One Word

Yesterday I read an article in U.S. 1 magazine about a project done by Westminster Choir College called "Giving Voice to Community". "Giving Voice to Community" is based on NPR's "Story Corps" and "Anthropological Wordsmith Picture Show". The project asks those attending Westminster Choir College concerts to be photographed with one word of their choice. Those who participate are not given any guidance as to what the word should represent. See some photos here.

That article got me thinking of what word I would choose.

The first word that popped into my mind was "SURVIVOR". But does that word make cancer the focus of my life? I admit that many times it is. I call myself a cancer advocate so I am reading about cancer, talking to other survivors , trying to raise awareness of ovarian cancer , volunteering with ovarian cancer organizations and raising funds for cancer research. That happens just about every day.

I am also a survivor who worries. This week I worried that my port might not function correctly. It functioned like brand new. I worried as I waited to see my doctor. And when her nurse practitioner came in to do the exam because my doctor had to see a newly diagnosed patient I was a bit hesitant. But then I thought to myself " You are 3 years out of surgery for your recurrence and 2 and a half years out of chemo , your CA-125 is 11 isn't it time to move on?" . The exam went well. So I am good for 3 more months.

So yes, I am a survivor. But I would choose the word

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I am more than just a cancer survivor , I am a wife, mother, grandmother, friend, advocate, engineer, teacher, blogger , crocheter, painter, Disney fan & dog owner. And I hope to add more to life in the years ahead.

Dee

Every Day is a Blessing