Rare Disease Day 2024

 

 

February 29th is Rare Disease Day®.

Rare Disease Day is an annual awareness day dedicated to raising the understanding of rare diseases and calling attention to the special challenges faced by patients and the community. Worldwide 300 million people are living with rare diseases.  To learn more about rare diseases and to read stories of those living with rare diseases visit the Rare Disease Day website at https://www.rarediseaseday.org/ .

These gynecologic cancers,

Ovarian cancer
Ovarian carcinosarcoma
Ovarian epithelial cancer
Ovarian germ cell tumor
Ovarian low malignant potential tumor
Ovarian small cell carcinoma

Uterine Carcinosarcoma
Uterine sarcoma
Vaginal cancer

Vulvar cancer

Fallopian tube cancer

Gynandroblastoma

Endometrial stromal sarcoma

Gestational trophoblastic tumor 

Leiomyosarcoma 

are considered RARE by NIH's Genetic and Rare Diseases Information Center. 

In the US, diseases that affect less than 200,000 people are considered rare.In the EU a disease is rare if it affects no more than 50 per 100,000 people.  In 2023, roughly 19,710 women in the US were be diagnosed with Ovarian cancer. Ovarian Cancer is a rare disease!

Why is Rare Disease Day important? 

Research funding to develop screening tests or treatments in rare diseases may be more limited than more common diseases. Due to the limited number of people with the rare diseases accruing to clinical trials is difficult. Trial designs are being modified to better understand rare diseases. As a person with a rare disease, especially people of color and indigenous people, it may be more difficult to find treatment centers and emotional support at diagnosis.Raising awareness through this day is important in the US and globally.

You may find additional information about Rare Disease Day on the  NORD - National Organization for Rare Disorders, Inc website . 

Do you have a rare disease? What would you like others to know about your disease? 

Dee

Every Day is a Blessing!

 

 

Memories and Change

One thing I can say on this journey with cancer is that Change is Inevitable. 

In 2006,  after I finished treatment for ovarian cancer,  I started attending a gyn cancer support group at  The Wellness Community of Central New Jersey which later became the Cancer Support Community of Central NJ  and is now Crossroads 4 Hope. I was so happy to be with other women who had been diagnosed with a gynecologic cancer. They "got it". I would drive from Edison to Bedminster to touch base with some amazing and inspiring women.  I attended art classes that were offered, educational sessions and my favorite presentation "Bogeyman in the Closet "dealing with the worries of recurrence.

I stopped attending the group during my recurrence and started up again when I finished treatment.

As my advocacy work grew, I not only attended the support group but also made presentations to other cancer survivors too. In 2008, after attending two LiveSTRONG Survivor Summits, I presented Advocacy 101. In 2011, I spoke on Reading Between The Lines in which I offered advice on how to critically read cancer research news.  In March 2012, I presented Survivor to Survivor: Understanding Cancer Research, on understanding how researchers report trial results in journal articles. 

After moving further from Bedminster,  I missed a number of in-person meetings but managed to attend a few every year. I loved this group. There were a few women who had been going for a number of years like me and a new group but it didn't really matter because there was always an atmosphere of strong support and understanding. 

When the Covid Pandemic started all the groups were switched to online Zoom meeting. I once again joined in.  The women in this group were newly diagnosed ovarian cancer and endometrial cancer survivors. I was the "old timer". We spent time talking about treatments, and genetic testing along with Covid testing, masking, vaccinations and our higher risk of contracting Covid. We lost two women during Covid. Although I never met them in person, I still felt their loss. 

In December,  the last meeting of the gyn cancer support group was held. There were 3 women in person and two of us online. The five of us were the core group on Zoom during Covid. There is hope to have some special programs for gyn cancer survivors in the future. In the meantime we can stay in touch through email. I am sad but understand the reasons for stopping and I appreciate the opportunity to have met so many amazing women and their families too, through this support  group.

Today as I was checking my contact list on my cell phone for a friend's number,  I ran across Lois's number, then Dawn's , then Carol's , then Rosemary's, then Diane's.  All these women were friends and their lives were cut short due to ovarian cancer. Some of them almost 10 years ago some two years ago.   I hesitated for a little bit as I came across each name. I thought of the impact they made in my life as survivors, advocates and friends. Wonderful memories of fundraising events sharing delicious food, meetings in the diner, support group meetings and KOH walks. We were all very different and I am not so sure our paths would have crossed if we had not all had a cancer diagnosis but I am so glad they did. 

Then I hit delete. I don't need their numbers, I just need the memories of having them in my life. 

Dee

Every Day is a blessing.

 

So Long 2023 - Welcome 2024 !

For those of you have followed this blog know that I don't make resolutions for the new year but rather I make a list of  aspirations.  When I was thinking about what aspirations should be on my list this year,  I realized I still have not visited Maine.  How long has visiting Maine been on my list? I went back and checked my posts and Visiting Maine shows up for the very first time in my first post of 2014. 

From Only In Your State website

It has appeared on the list every year since then - 10 years! And it will stay on the list this year too, along with :

Spend more time with my children, their spouses and grandchildren.

Practice more watercolor painting.

Spend less time on social media and more time connecting in real life.

Continue to play Pickleball, practice Yoga and dance in Jazzercise class 

Continue to take long walks with my dog Amber - a great quiet time in my day.

Continue to do the advocacy work that brings me joy - grant reviews and learning about and sharing research news

What do you aspire to do?  Remember it might not happen right away  but we can always reach for it. 

I've seen some folks pick a word of the year.  I thought that silence would be a good one - sometimes I am so busy doing things that I never experience silence except for when I take a walk with my dog.  I read a list of words a friend share with me and thought boundaries would be a good word too. I need to set better boundaries when it comes to advocacy vs other aspects of my life. Then I thought I would try using a word of the year generator and it gave me :

PROSPER

I like it! I can aim to prosper in so many different areas of my life. Have you picked a word?

Happy New Year! 

Dee

Every Day is a Blessing!

Ending Another Year of Blogging

 

On December 30, 2007 , I started writing this blog. It began as a place to share my story, support women diagnosed with ovarian cancer in New Jersey and to raise awareness of the disease. It has developed over time to be a place where I not only share my personal news but also share all aspects of cancer research from bench studies to clinical trial results. I have also reported news about latest treatments after attending oncology meetings.

This year's popular posts were 

Ten Years as a Community and Chat 

ASCO23 Day 4 (6/5/23) Gyn Cancer Posters, Poster Discussion session & Misc topics

The Importance of Obstacles - 18 Years Later

Authoring this blog has opened doors for me in cancer advocacy and I appreciate all of you who have read it through the years. It has been a privilege.

 

Wishing you good health and happiness in 2024!

See you next year.  

 

Dee

Every Day is a Blessing!

 

 

 

 

 

 

 

 

Joy and Peace 2023

Today my family and I celebrate Christmas, the birth of Christ. Whether you celebrate Christmas or Hanukkah or Kwanzaa or Diwali or another holiday, I wish you Joy and Peace this Season.  

 

Dee

Every Day is a Blessing! 

Living with a Question Mark and Exclamation Point

The Washington Post recently released an interview with Susan Gubar, ovarian cancer survivor and literary scholar. Susan wrote the book Memoir of a Debulked Women, which I read a number of years ago, as well as a number of New York Times articles about her cancer experience.  This article was titled Survivor reflects on living with cancer and the ambiguity of remission (Nov 11,2023). As I read the article on my phone I thought of the similarities of our experiences. Susan is now 15 years out from her diagnosis.  

When asked about remission she called remission the sword of Damocles. My goodness that is so true. 

She then went on to share how she has been on a drug holiday for the past few years and her Remission? has become a Remission! . Why the switch to an exclamation point? It was because of her gratitude for the unanticipated time with her family. I never thought of Remission! before because for so long I was waiting for the "other shoe to drop". It took me a few years to work through those emotions of going from a person who may have five years of survival( The 5 year survival rate for women diagnosed with late stage ovarian cancer is 30%) to being a ten year survivor and then a  fifteen year survivor  and counting.  

Since I finished treatment for a recurrence on my liver and spleen fourteen years ago, it really has been just that - a time of ! . I have seen my son marry, welcomed two beautiful grandsons into the world and spent time with my husband traveling - Alaska, the National Parks, Fiji, New Zealand,Australia, England. I even got to visit a number of states on my way to visiting all 50 states. 

The extra time for me has also meant using the time for advocacy. It is my way of showing gratitude to my team of physicians and nurses at Rutgers Cancer Institute of New Jersey, to the researchers working to cure gynecologic cancers and also a  way of giving back to my teal sister community for their support. 

The next question Susan was asked dealt with anxiety. She spoke about "scanxiety" - It is a real thing by the way. Her way to handle it is with distractions - new recipes a good book etc. Like Susan, even after eighteen years of yearly check-ups and CA-125 testing, in the two weeks before testing , my world becomes one of doubt and anxiety for what may lie ahead. For those who may not remember,  I had a normal CA-125 (17) and felt good when I actually had lesions on my liver and spleen. So it is no wonder why even if I feel good, I have a feeling of trepidation every September. Now though, my test results appear quickly in my portal. No more waiting days to hear the results. My phone will show a text that there is a new result uploaded to MyChart. I am on reading the results in a matter of minutes. That is a good change since I was first diagnosed. 

If you get a chance read the article to get a better understanding how survivors like Susan and I deal with surviving a cancer diagnosis.

Lastly, I want to once again say how grateful I am for the excellent care I received and still receive at the Rutgers Cancer Institute of New Jersey. 

Happy Thanksgiving !

 

Dee

Every Day is a Blessing!

A Radio Interview !

 

Alka Agrawal and I met through the Rutgers Cancer Institute of New Jersey's Cancer Community Action Board. Alka is the general manager of EBC Radio 1170 radio located in Monmouth Junction, NJ.

EBC Radio is the largest South Asian radio station in the United States through radio,  app and website. They have over 500,000 listeners.

Alka invited me to tell her listeners about my experience with ovarian cancer and the importance of raising awareness of ovarian cancers and all gynecologic cancers during September, Gynecologic Cancer Awareness month. I was a bit nervous at first having never been on the radio before but Alka made me feel comfortable.  I shared how I was diagnosed, considered a clinical trial and my cancer treatments. I also shared my involvement in cancer advocacy.  I spoke mainly about ovarian cancer but did talk about the five main gynecologic cancers - ovarian, uterine/endometrial, cervical,vaginal and vulvar.

I was honored to share my story with the South Asian community in NJ and across the country through EBC Radio.

If you click the arrow below you may listen to a clip from my interview. Correction : The American Cancer Society estimates that ~ 19,710 women will be diagnosed with ovarian cancer the US in 2023. They also estimate that ~650 women in NJ will be diagnosed with the disease. That would be 3% not 1/3.

Dee

Every Day is a Blessing!