Words That Changed My Life

Nineteen years ago today I heard the words, "I'm sorry Dee you have stage 3 B ovarian cancer and I will do everything to make you well." I would not be writing this blog if not for my diagnosis. What path would my life have taken if I had not heard those words? I will never know.

On this cancerversary, I am ever grateful to the two women gynecologic oncologists who brought me through two of the toughest moments of my life - my cancer diagnosis and my recurrence. Thank you Dr Lorna Rodriguez  and Dr Darlene Gibbon for your surgical skills, for offering me a clinical trial on initial diagnosis and for prompting me to apply to attend the LiveStrong Survivors Summit in 2006. Yes, all the advocacy work I have been able to accomplish is all because of these two amazing physicians. Their support through the years has been invaluable to me. 

I am thankful too for the wonderful advance practice nurses, infusion nurses and the pharmacists at Rutgers Cancer Institute of New Jersey. They listened to my concerns, answered my questions and comforted me when I was anxious. 

When I was initially diagnosed I was tested for mutations in the BRCA 1 and 2 genes. Today we know that BRCA mutations cause 10% of the ovarian cancer diagnosed. Just this year, a study in Nature  titled Identification of potentially actionable genetic variants in epithelial ovarian cancer: a retrospective cohort study included this table of other mutations associated with ovarian cancer. 

Look at how extensive that list is today! We know so much more about risk factors and the mutations that cause ovarian cancer. Researchers have given me hope as they report at SGO and ASCO meetings  progress on the development of novel treatments that have led to FDA approvals the drugs bevacizumab, parp inhibitors and antibody drug conjugates for Folate receptor alpha + expressing tumors.

While my life has changed in so many ways, one thing has remained the same after nineteen years.  There is NO screening test for ovarian cancer. There have been many good efforts but not one test has turned out to be specific and sensitive enough to detect ovarian cancer. We have more work to do but I know the dedicated ovarian cancer researchers I have met through the years will continue working to find a test and therapies to extend life. 

Here's to seeing what the future will bring for me and all women diagnosed with ovarian cancer!

Dee

Every Day is a Blessing!

A Powerful Memoir - Between Two Kingdoms

The first time I read the writings of  Suleika Jaouad was in her the NY Times column  "Life Interrupted" . She wrote about her leukemia diagnosis and treatments.  In 2022, I shared in this blog a piece Suleika wrote for Nancy's List ( https://nancyslist.org/). That post mentioned her best selling memoir, Between Two Kingdoms , A Memoir of a Life Interrupted.  Back then I added it to my Goodreads "Want to Read" list.

A few weeks ago while browsing a bookstore in Princeton, I saw the book, bought it and started reading it.

In the first few chapters I got to know more about Suleika's family and background. She attended Princeton University, right across the street from the Labyrinth bookstore where I purchased her book. As I read further along I started to dog ear the pages. I tend to do that with books I own so I can come back and reread or share the words. As you can see, I frequently dog eared pages in this book. 

 

Suleika's story as a young cancer patient and survivor is a powerful one. She found the perfect words to describe how she felt both physically and emotionally from diagnosis , through the various treatments and as a survivor. We are thrown into a system we know nothing about so we try to learn as much as we can. We are fatigued from treatments yet we want to still "do" things.   I remember feeling how life went on for others while I couldn't get out of bed. Or that others were annoyed over someone cutting the line at the food store while I wished I could get out there to the food store. Suleika stated is as - " The world is moving forward and I am stuck." So many times as I read the book I thought to myself - " I felt that way" even though my diagnosis was different and I was diagnosed at an older age. 

" To be a patient is to relinquish control- to your medical team and their decisions, to your body and its unscheduled breakdowns. Caregivers have a similar fate." The way in which Suleika described how her diagnosis, treatment and survivorship  affected her mother, father, brother (who provided the bone marrow for her transplant) and boyfriend was especially poignant. We survivors experience the disease, tests, treatments alone - yet our family is equally affected both emotionally and physically.    

Suleika described feelings of loss - facing infertility due to chemotherapy and a bone marrow transplant. She shared the decision and the process to harvest her eggs. She was like so many young women diagnosed with ovarian cancer I have spoke who face infertility.

Especially moving was Suleika's description of the relationships that developed with other young adult  patients, in particular those who died because of their disease. " I think of how the Taj (MAHAL) embodies both love and grief. So did my friendship with Melissa . In life, I'm realizing, you don't get one without the other. "  I understand that so well with the loss of friendships that developed only because we were Teal sisters. I still miss and think about Rita Kay, Carole, Pamela, and so many more.

Suleika faced what so many of cancer patients do regarding being told we are NED ( No Evidence of Disease) and the fear of recurrence.  " The nagging voice in my head that whispered: Don't get too comfortable because one day I'm coming back".

I loved how Suleika learned to drive and took a cross country trip with her dog, Oscar,  to visit strangers who wrote her after reading her NYT column. I couldn't stop reading about each stop and the people - planned and unplanned - she met along the way . "May I be awake enough to notice when love appears and bold enough to pursue it withoug knowing where it will lead." 

As I read Suleika's website I learned she began painting while in the hospital and continues to paint. I started painting too when I in chemotherapy. She is having an art exhibit at the ART yard June 22 - September 22, 2024 in Frenchtown NJ. I regret having waited so long to read this book but I will make a point of going to see her art work. 

 This book  is a keeper and I highly recommend it. 

Thank you Suleika Jaouad for sharing your experience with all of us.

Dee

Every Day is a Blessing!