Thursday, November 11, 2021

Advocacy - the Good and the Loss

Since my last post, my advocacy work has been time consuming but worth it since I felt good about the "work" I was doing. There were two Scientific Review Board meetings, two ASCO Evidence Based Medicine Committee meetings, two #gyncsm chats ( Genetic Testing and Gyn Cancers , Talking to Family and Friends about Cancer and Cancer Risk), two Citizen Scientist Workgroup meetings, a Community Cancer Action Board meeting and support calls for Cancer Hope Network. I also was involved in submitting two journal articles.  I can't wait to share them early next year. 

Those were the good things. But with those comes the sad parts. During a support group meeting in October the moderator asked me why I didn't write about those sad parts.At that time it was too difficult.

I met Nadia through Twitter. In December 2020, she reached out to me via direct message on Twitter.   She had been diagnosed with stage 3 high grade serious ovarian cancer.  Nadia Chaudhri was a neuroscientist in Canada. She taught, had a lab and mentored students. She was married with a young son. We didn't speak too much about treatments except for maintenance therapies. But we did talk about emotional issues. How to find a new way to live after ovarian cancer,  sharing the best times with our loved ones and talking to children about our cancer. In February, she told me the lesion was gone . We talked about savoring that good news. In DMs, we talked how I plot my CA-125's and how much to this day I still get anxious when I need to go for that blood test.

She shared on her public Twitter account about ovarian cancer, her treatments and hospitalizations, and her family. She gained thousands of followers.  In May, she learned her cancer had recurred. In a Tweet , she shared how she told her son she was dying of cancer.  GMA published her story Mom gets outpouring of love from Twitter after revealing she has to tell her son she is dying ( In a DM, I shared that my mother passed away when I was young and how I thought that telling her son was a loving act.

In September , Ovarian Cancer Awareness month, she shared her story on the GMA website to raise awareness of symptoms in  Mom dying of ovarian cancer shares what she wants women to know about the deadly disease ( . She also raised funds to support underrepresented scholars in her research area.

On October 5th, at the age of 43 Dr Nadia Chaudhri died. 

I read a tweet saying she had passed and sat at my desk and cried. I never met Nadia in person yet her life affected me so, so strongly. I had a hard time explaining to my husband as he saw me crying how a women I only met because we had ovarian cancer could have such an strong affect on me. I still can't explain it except that Nadia was an extraordinary woman. 

Every Day is a Blessing!