Aspirations for 2025

Wishing you all a Happy and Health 2025. 

It's time once again to put together my list of what I aspire to do in 2025. 

• Let's start off with something that has been on my list since 2014. Yes, Visiting Maine remains on my list. Maybe this year?
• Amber is going to be 15 years old this year. I hope to continue to take her on those long walks.
• I will continue to create art - watercolor in particular.
• Exercise is on my list. I'll continue taking lessons and playing Pickleball and dancing in Jazzercise class.
• As the #gyncsm chat on X/Twitter came to a close I started thinking more about the types of advocacy work I am involved with. My ovarian cancer experience, now twenty years old is valuable on some levels but is out of date in other areas. I have no experience with any of the new treatment options. So some activities - updating this blog with the latest ovarian cancer research news, reviewing cancer research grant applications and being a patient advocate advising clinical trials and mentoring other women diagnosed with ovarian cancer will continue.  Slowly, I will scale back other time commitments. I will finish the terms of my appointments on different committees but I will not accept new positions in 2025.
• I look forward to spending more time with Nick, my children, their spouses, my grandsons and friends.
  

I think my word of the year will be SILENCE. The world is a noisy and busy place. I tend to be on the move a lot. So I'll make an effort to just be quiet - no TV, no social media, - just be. 

Dee 

Every Day is a Blessing!

Christmas Ornaments

This year our one large Christmas tree is filled with lights and ornaments, there is no ribbon, garland or tinsel to be found.  After many years of marriage, the ornaments represent memories through the years including older family ornaments,  hand-made ornaments from our children and grandchildren and ornaments from places we have visited.

My grandson was looking at the tree and asked if this ornament really was a bell. 

 

Yes, inside it is a tiny bead clapper. It makes a sweet sound. Like the bell in Its a Wonderful Life("When a bell rings an Angel gets its wings" fame. That bell ornament hung on my tree when I was growing up. 

Then I pointed to this ornament from my childhood. 

 

It is made from an egg shell that has ribbon, glitter and paper glued on it. My guess is that it is from the mid-1960's.  This is the last of its kind so it hangs high on the tree.

Then he found this ornament, holding a photo of our first pug, Kona. 

He looks a little smaller than my grandson's new black pug puppy who is pictured below waiting for a treat with his brother Walter and cousin Amber.

 

At times, looking at those older Christmas ornaments, decorations and Christmas dishes made me think of loved ones who are no longer here to share these memories with - my sister, dad, Aunt Dora and Nick's mom, dad and brother. Our family traditions -  such as  making my Aunt Dora's Christmas Love Knot cookies and hanging those old ornaments on the tree helps to keep their memories alive for all of us. 

Wishing my readers, JOY this holiday season! Thank you for letting me share my holiday with you.

Dee

Every Day is a Blessing !

Eleven Years of Supporting and Educating the Gynecologic Cancer Community

In 2013, Christina Lizaso and I founded the #gyncsm chat and community on Twitter/ X. This year, eleven years later, we made the difficult decision to cease hosting the #gyncsm chat. You can read more about our decision on the #gyncsm blog.  Our last chat will be Wednesday, December 11, 2024 at 8pm ET with special guest and long time #gyncsm chat supporter, Cervivor. 

 We have done so much - in addition to changing our logo through the years.

We held a total of 108 chats (including this December chat).  We covered many topics including risk factors, caregiving, parenting, working while being a cancer patient, personalized medicine, treatment side effects, how to work and communicate with your health care team and survivorship.  These chats were possible because of the many individuals, organizations and groups that supported us. 

We had support from gynecologic oncologists who volunteered their time to be our  health care moderators and others who joined the chat as guests sharing their expertise. We had researchers join us to talk about their research and new treatments available to women diagnosed with gynecologic cancers. We chatted multiple times about every gynecologic cancer including the more rare types such as vulvar, sarcomas, GTD and primary peritoneal cancer. We held two digital health fairs and invited cancer support organizations to share the resources they provide to cancer patients and their caregivers. We've talked to cancer health equity experts about how to best provide cancer health care to all women. We've had chats focused on the emotional impact of a cancer diagnosis, fear of recurrence and how to talk to your children and family about your diagnosis. We've talked with genetics counselors about hereditary cancers, genetic testing and mutations. We raised awareness of pelvic health, pre-habilitation and nurse navigators. We discussed types of advocacy from research advocacy to advocating for yourself or your loved one. We talked frequently about clinical trials from the types of trials to how to search for and enroll in a trial. Annually, we shared the latest research news from the ASCO and SGO annual meetings. And we can't forget about the insights gynecologic cancer patients provided to each other and to researchers during our chats.

Personally, I have been blessed to be part of the  #gyncsm chat. I am so grateful to have worked with Christina these past 11 years to bring support and education to the gyn cancer community. Working on the chat and sharing information has opened doors for me to expand my advocacy work. I not only meet some of the top gynecologic cancer researchers in the world but have had the opportunity to work with them. I've co-authored a book, presented at oncology meetings, and worked on SGO, ASCO and NCI committees. I also have had the opportunity to be a patient advocate on a number of clinical trials. And  I learned from the gyn cancer patients and caregivers in our community- what a courageous and motivated group. I am sad to see the chat end but so appreciate the opportunities provided to me by the chat. 

I will continue to share research information on X using the #gyncsm hashtag and our blog will remain active so that members can have access to the resources and chat transcripts. 

You can find me here and as womenofteal on X, , Facebook, Instagram, Threads and Bluesky. 

 

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

Early Clinical Investigators - crucial to ovarian cancer research

Last week, I was invited to speak about my advocacy work and my experience with ovarian cancer during the DOD Ovarian Cancer Academy . The Academy began in 2009 through the Congressionally Directed Medical Research Program Ovarian Cancer Research Program (CDMRP  OCRP). Dr. Michael Seiden stated  “the amount of science that needs to be covered to really get a global understanding of ovarian cancer is massive...it brings special opportunities for researchers... because there’s a lot of room to make a difference, but it also requires the ovarian cancer community to work hard to recruit young scientists, young clinical researchers into the field because we need more individuals to commit their time, energy, and talent to the problem.” The Academy is a virtual career development process which provides early clinical investigators (ECI) from the US and abroad with mentors, networking and peer support.  The leaders of the Academy (Dr Ronny Drapkin and Dr Kenneth Nephew) serve as a resource and foster collaboration among mentors and early investigators. 

On Wednesday,  I shared my story as a survivor and advocate along with advocates and survivors, Katy Loewy, and Rebecca Esparza.  I was honored to be given an beautiful advocacy award from the Academy. 

 

While I can't share the research ideas presented during the Academy, many of the proposals were basic research proposals that did not involve patients in clinical trials but research that took place in the lab using different models. There was an interesting discussion among the Academy leaders, mentors and ECIs regarding the use of different ovarian cancer cell lines, mouse models and patient tissue from tissue banks. I learned that it can take over two years to develop these models and this development is not covered by the grant proposals but must be funded by other means.

On Thursday,  I took part in a mock grant review. We reviewed an early investigator's grant proposal and then presented our evaluation as we would during an actual grant review meeting. I found the research avenues taken by these early career investigators can have a major impact on the lives of women with ovarian cancer. The mentoring by experienced investigators will help to keep a pipe-line of ovarian cancer investigators full and it gives me great hope for the future. I can't thank Drs Drapkin and Nephew for this amazing opportunity.

It was a beautiful day on Thursday. That afternoon I had the chance go to the top of the Space Needle. Spectacular views!

 

What a way to end such an amazing trip. 

Dee 

Every Day  is a Blessing!

Walking Alone But With A Purpose

September is ovarian cancer as well as gynecologic cancer awareness month. Each year since my diagnosis, I commit to doing an activity related to raising awareness and funds for research. This year on Sept 8th I registered for and walked the Kaleidoscope of Hope Ovarian Cancer Foundation Walk in Morristown, NJ. Since 2006, I have been involved with KOH through walking, serving on the Board of the Foundation and donating to support research. 

It was a cool crisp September morning with a beautiful blue sky when I arrived at the park to walk. I said hello to a number Board members and other supporters I have known for years. This year, I was planning to walk with a friend who is currently in treatment for a recurrence of ovarian cancer but she was unable to join me.  As the DJ played music and the Board members welcomed everyone to the event the families and teams including dogs wearing teal gathered at the starting line.  

I waited behind a bit and then I started to walk by myself. I got passed a few times by others but I continued to walk the paved path through the woods. There was so much to see!  

There was a great blue heron that flew over, a white heron by one of the three ponds I passed,  a golden retriever puppy being trained in the open area by the pond, different types of wild flowers  trees, and fungus. The time alone gave me time to reflect. I thought how walking alone - though surrounded by lots of other people - was similar to facing  an ovarian cancer diagnosis. Even though we can have a wonderful caregiver, and support from family and friends, we face our diagnosis alone. We may discuss with our doctors treatment options but we ultimately make that final decision. We get brought into surgery by ourselves. We enter the CT machine by ourselves. We may even read our test results on the portal by ourselves. The choices we have to make are not always easy but women make the best decisions they can. 

I got about 2 miles from the start and decided it was time to turn around. I walked a short way back and ran into a friend and his son. His wife died from ovarian cancer a few years ago. It was good to catch up with them. And I thought to myself how good it is to have the support and love of family and friends when you are diagnosed with cancer even if we face so much alone.

Special thanks to my family and friends who donated over $500 in support of ovarian cancer research.

Dee

Every Day is a Blessing!

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!