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