Friendships, Joy and an Anniversary

Past December posts have included photos and stories about the ornaments on my tree. This year there are three new additions and they each bring their own story.  

This year's Mount Vernon ornament is of George Washington kneeling in prayer. Over the course of 2025, I have said many prayers for friends and family members. Those Prayers were not always answered.  Over the past few days,  the losses I experienced break through the festivities and happy times and tinge it with sadness. 

The next ornament was from a friend of 30+ years. This time of year, the value of those long time friendships means so much. This friend came from a time before cancer and has remained by my side when I was diagnosed and is still part of my life's journey today.  It sounds cliche' but those friendships are a blessing. 

Since my cancer recurrence I moved to a small  55+ community. The move 15 years ago has brought new people into my life. These neighbors have become friends. We go out to dinner regularly,  we play pickleball and hang out at the pool and laugh and share our reviews of the new restaurants in town. They haven't walked my entire cancer cancer journey but they have added a sparkle and joy to my life. One of these new friends gave me the ornament you see below.

 

I hope that your friends, old and new, will bring you JOY this holiday season. 

On December 30th, I celebrate the 18th Anniversary of this blog. I am not as consistent now as I was during the first ten years of blogging to post but please stick around! In the new year, I'll be writing posts on newly approved FDA drugs for treating ovarian cancer, antibody drug conjugates currently in clinical trials and the importance of biomarkers and genetic testing in cancer patients. 

Wishing you all a Happy and Healthy New Year. See you in 2026!

 

Dee

Every Day is a Blessing!  

Finding our WAZE

I haven't written a blog post in quite some time. It seems that life got in the way of my writing. Then, once I had time,  I couldn't seem to find the spark to get me writing, until yesterday. 

We were heading out to an appointment and set up Carplay to use Waze on the built in screen in my husband's car. That got me thinking about how I found my way to different places when I first learned how to drive. This was many years ago, so what follows might not make much sense to some of my readers and for others - yes, we are that old! 

I would ask my Dad for one of his ESSO road maps.  I'd look up the street coordinates and using  the rows and columns, find my destination. Then I would plan my route. I'd usually write down the directions -  Take Route 22 till Route 82 and go north etc. I would bring those notes in the car with me and off I went. I tried to gauge how long it would take based on how far away my destination was. If there was road work I'd just have to hope they had detour signs telling me where to go. And if there was traffic, I'd just sit in it. I wouldn't take other roads because I wasn't sure if they would take me closer or further from destination. 

Yesterday process for directions was different. We plugged in the address in the app and the screen in the car  highlighted our route in blue on a map as a voice gave us directions. The screen showed us our speed and our arrival time. As we drove, I saw so many other Waze users ( cute little icons)close to our route. Most were getting on or off the NJ Turnpike. Then the app gave us notifications about two cars on the shoulder of the road. These notifications came way before we even saw the vehicles. This happens because other Waze users tell the app they just passed a disabled car on the shoulder or they saw a police car.  The app also told us how far it was to our next turn. And soon it told us we had arrived at our destination on the right. 

Now you might ask why am I talking about directions and traffic alert applications.  What did this have to do with cancer? Over the past 20 years, I have gone from reading books about ovarian cancer, seeing brochures about peer support programs in my gyn oncs office and looking at flyers about support groups on the bulletin board in the waiting room. Just like using a paper map to find a location. 

Today, I read published journal articles about ovarian cancer online the day they are published.  I interact with fellow survivors and health care professionals on various social media platforms from Inspire and Smart Patients to Facebook, X and BlueSky. The ability to find support and information online is like those fellow Waze drivers giving me an update of traffic ahead. Those drivers have already experienced the traffic accident and can warn me of what lies ahead. Just as there are fellow cancer survivors who can act as a "driver" to tell me what side effects to expect when in chemo, what it is like being in a clinical trial or how important it is to have genetic testing.  

I know we do have cancer centers and organizations that offer resources and support such as  OCRA, FWC, SHARE, FORCE, Cancer Hope Network, and others. But are those resources readily available to all women with a gynecologic cancer as easily as those drivers on Waze can warn me of cars on the shoulder?  Or are women turning to AI or Dr Google to find answers?   We all know that some sources can be misleading and offer solutions that may even be harmful. 

So lets all make an effort to have information available for women diagnosed with gyn cancers and make sure that information is from reliable and accurate sources.  We can help "drive " and support the experience of women with cancer. 

 

Dee 

Every Day is a Blessing  

 

 

 

#GCAM Diagnosis and Types and Stages of Ovarian Cancer

I spoke about how there are symptoms of ovarian cancer( gloating, freq urination etc) in my previous post. What happens when you go to your gynecologist or primary care physician with these symptoms? Your doctor may image your pelvis with an ultrasound. If something is abnormal you may have a CT or MRI. You also may have a blood test for a protein in the blood called CA-125. The marker is raised in most serous ovarian cancers ( I'll discuss the types a little later in the post) but it may not be elevated  in other types . It can  also be elevated if the women is still menstruating which is why the CA-125 is not used as a screening test for ovarian cancer. The Foundation for Women's Cancer has an informative book on CA-125 ( https://foundationforwomenscancer.org/wp-content/uploads/2023/07/FWC_CA-125-Levels-Your-Guide.pdf )

If these test come back abnormal it is important to see a specially trained gynecologic oncologist. Studies show that survival rates for women treated by a gyn onc are higher than those who have treatment.   

Staging OC 

It is important to know if the cancer has spread from the ovaries to other areas of the pelvis or abdomen. Two organizations the  International Federation of Gynecology and Obstetrics and the AJCC  (American Joint Committee on Cancer) have systems for staging called the FIGO and TNM staging systems.  Both look at the size of tumors,  Lymph node involvement and spread beyond the ovaries. 

The stage is determined by the amount of spread and size of  tumors. 

 Below is a diagram of the stages from FWC. 

 Types of OC 

 The most common type of ovarian cancer ( 85%) is Epithelial ovarian cancer. The develop on the Fallopian tubes or on the surface cells of the ovaries. These epithelial cancers can be from mutations in the BRCA1 or BRCA2 genes. Epithelial ovarian cancer can be high grade or low grade. Knowing the difference provided information to develop the best treatment. There are a number of histological ( structure at the cell level) subtypes of epithelial ovarian carcinomas :

Serous - most common type may be high grade or low grade 

Endometriod 

Clear Cell

Mucinous

Transitional Cell  

 

Germ cell cancers make up about 5% of OC diagnosis. Germ cell cancers start in cells that are found in the follicles or eggs in the ovary. Usually adolescents or young women develop this disease.   

Teratoma

Dysgerminoma

Immature Teratoma

Yolk Sac tumors 

Mix germ cell tumors 

Sex cord- Stromal Cell Cancers develop in the cells that produce female hormones ( such as estrogen). 

It is important when treating ovarian cancers that information about the histology, molecular structures and morphology be considered. 

 

Next week I'll share resources on Treatments. 

 

 

Dee

Every Day is a Blessing!  

  

 

Sources https://foundationforwomenscancer.org/gynecologic-cancers/gynecologic-cancer-types/ovarian-cancer-primary-peritoneal/ 

https://www.cancer.org/cancer/types/ovarian-cancer/detection-diagnosis-staging/staging.html

https://pmc.ncbi.nlm.nih.gov/articles/PMC8774015/ 

https://my.clevelandclinic.org/health/diseases/6186-ovarian-germ-cell-tumors 

https://www.mskcc.org/pediatrics/cancer-care/types/germ-cell-tumors-sex-cord-tumors

#GCAM Ovarian Cancer Risk Factors

Since there is no screening test for ovarian cancer understanding your risk for the disease is important. 

Family history is a strong risk factor for being diagnosed with ovarian cancer. 

Does your family - mother, sibling or daughter have ovarian cancer?  According to the American Cancer Society your risk is 4 times the general population. If your mother, sister or daughter has been diagnosed with breast cancer your risk is increased by 70%. This increased risk is due to mutations in the BRCA1 and BRCA2 genes. If you are of Ashkenazi Jewish ancestry you have a 1 in 40 chance of having a BRCA1 mutation placing you at risk for ovarian cancer and breast cancer. There are a number of online resources that can help you have that conversation with relatives about family history. The CDC has an app My Family Health Portrait: Cancer app you can use to collect family history.

Other risk factors for ovarian cancer include:

Lynch Syndrome ( 12% lifetime risk of ovarian cancer)  

Your history of other cancers( breast, uterine, colorectal) 

Your history of endometriosis ( Associated with Low-grade serous carcinoma, Clear cell carcinoma, Mucinous carcinoma, Endometrioid carcinoma)

Age ( the median age of diagnosis is 63)

Early menstruation, no childbirth,  child birth after 30 , no oral contraceptive use  and infertility 

Obesity

  

We may not be able to prevent cancer but there are ways to reduce your risk of ovarian cancer? 

If you use oral contraceptives for five years you can reduce your risk by 50%. Multiple pregnancies ( ovulating less)  and pregnancy before 26 years old can also reduce your risk. 

Another way to reduce risk is to have your Fallopian tubes removed. Many High grade serous ovarian cancers originates in the Fallopian tubes.  The surgery to remove the Fallopian tubes when done during another gynecologic surgery such as a hysterectomy is called opportunistic salpinectomy. This surgery leaves the ovaries intact. 

For women with a BRCA1 or 2 genetic mutations risk can be reduced by having a  bilateral  salpingo-oopherectomy where the fallopian tubes and ovaries are removed surgically. Primary peritoneal cancer may still occur after this surgery but it is rare. 

Sources : https://ocrahope.org/for-patients/prevention-risk/ , https://www.cancer.org , https://www.basser.org/brca/brca-ashkenazi-jewish-community

 In my next post I'll talk about diagnosis and types of ovarian cancer. 

 Dee

Every Day is a Blessing! 

#GCAM Symptoms of Ovarian Cancer

I follow the Foundation for Women's Cancer and loved the design of this graphic for #GCAM. I would change the hashtag #ASKHER to #ASKME. 

 

 

There is NO screening test for ovarian cancer. That is why it is so important for women to know the symptoms of the disease. If these symptoms last more than 2 weeks please see your gynecologist. 

bloating, 

urinary symptoms (urgency or frequency), 

pelvic or abdominal pain,

 difficulty eating or feeling full quickly

Mentioning the pain I was having on the left side of my pelvis to my gynecologist during my annual exam made a difference in my life. I thought it was nothing - a pulled muscle maybe. But she knew it didn't sound right and she sent me for a transvaginal ultrasound.  I was on my was to a diagnosis. 

Next post will be about Family History and Risk Factors for Ovarian Cancer. 

Dee

Every Day is a Blessing! 

September is OVARIAN CANCER AWARENESS MONTH

I am not sure where the month of August went and here we are starting September. If you have followed me for any period of time you are probably already aware that September is Ovarian Cancer Awareness Month. Teal is the awareness color for ovarian cancer. 

Teal Awareness Ribbon for Ovarian Cancer Awareness Month 

 Let me start with these important facts:

There is no screening test for ovarian cancer. 

Approximately 20,890 women will be diagnosed with ovarian cancer in the US in 2025. *

Approximately 12,730 women will die in the US in 2025 due to  ovarian cancer.* 

 

I have been an advocate for ovarian cancer research for 15+ years.  While we have made strides in treatments( VEGF inhibitors, Anti-body drug conjugates,  immunotherapies) there is no cure.  That is why raising funds for research is so important. 

This year due to NIH funding cuts raising awareness of ovarian cancer and more importantly funds for research take on a greater urgency. I will be posting symptom and risk information as well as other resources throughout the month in my small effort to raise awareness.  

I will be raising funds for research this year by walking on Sept 28, 2025 at the Kaleidoscope of Hope Ovarian Cancer Foundation walk at Loantaka Brook Park in Morristown. Join me, my family and friends as we walk as Team Determined. We are walking to honor the memory of a dear friend, Mary Lu, who passed away in July due to ovarian cancer. Donate to Team Determined at https://www.classy.org/team/766060. 

If you live in other areas of the country, check to see if there will be walks or other fundraising events being run by ovarian cancer organizations by you. Or donate to support research through OCRA or Foundation for Women's Cancer .

Thank you in advance. 

 Dee

Every Day is a Blessing!  

* https://www.cancer.org/cancer/types/ovarian-cancer/key-statistics.html

 

 

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.