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 (https://www.goodmorningamerica.com/wellness/story/mom-outpouring-love-twitter-revealing-son-dying-77674650). 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 (https://www.goodmorningamerica.com/wellness/story/mom-dying-ovarian-cancer-shares-women-80167654) . 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. 

Dee

Every Day is a Blessing!

Blogs and A Decision

For the past few weeks I have spent most of my time with my children and grandchildren. It was a fun time swimming and exploring new things, drawing and creating things with them. Now that they have headed to their new home, I have time to get back to writing posts for this blog. But I had a problem. What do I write about? Seems that for the past week I have had "bloggers block". 

Then yesterday, in a Facebook group I belong to, I ran across a post by a women with ovarian cancer who shared a link to her latest Cabernet and Carboplatin Blog post "Identity". As I read the post I could relate to how she was feeling and I loved how Carol wrote. I thought to myself that her blog would be a great one to add to the list of ovarian cancer blogs I created on Listly.ly (https://list.ly/list/NRQ-gynecologic-cancer-blogs ). There is a link to the list in the right column of this blog. 

The list I created a few years ago includes blogs written by women diagnosed with ovarian cancer or their loved ones. It does not include single blog posts by patients, survivors or caregivers appearing on other independent, patient or awareness organization websites. It had been so long since I did an update that I had to look up the password to access the list.  I added Cabernet and Carboplatin. Then I "googled" ovarian cancer blogs and found two other blogs that I was not familiar with but liked the posts I read. So I added these blogs written by young women, Finding Cyril - The Musings of a Young Woman Diagnosed with Ovarian Cancer and Let's Kick Ovarian Cancer - A Journey with Ovarian Cancer at Age 26 , to my list.

After making the adds I started going through the list. Afew of my survivor friends, including a few from the UK are still writing.  Then I found a few blogs in a row where new posts haven't been made for over two years. Why did these women choose to stop writing their blog? In one case I am friends with the woman on Facebook so I know she is doing OK. But in many of the other cases the last post related to decisions about hospice and facing death or posts from family members. I was overwhelmed with sadness that after so many years so many women's lives are still  lost to ovarian cancer.

Now I am in a quandary. Do I leave those blogs where women haven't posted in a number of years? Or do I delete those blogs from my list?

Then I thought about my "On this Day"  that showed up this morning on Facebook.

Eleven years ago my friend Courtney had posted:

"Hey Dee... just wanted to say hello and thank you for the cards you've sent my way. They've made me smile :) Hope you're having a good summer! "

She passed away in 2011, yet this morning I read that memory and I smiled and thought how blessed I was to have known this dynamic and amazing young woman. 

So for now I will be leaving those blogs in my list. My way of never forgetting the women whose journey ended but who lives blessed so many of us.

Every Day is a Blessing!

Dee



 

Two Different Goodbyes

The past week was not a good one for me. Sadly though, it was not an unusual one for me as I approach 10 years of survivorship. Something very similar happened in 2012.

At my support group meeting on Tuesday I said goodbye to J. She shared with the group that her cancer had spread and after years of being in various treatments and clinical trials she had decided to stop. She was moving home to be with her mom in another state and would be leaving in about two weeks. She invited us all to make a trip to visit her. My heart ached as I watched her share her feelings with us. She is brave and strong and scared. I held back tears. And I did a good job until she left the room. 

I came home and sent and e-mail to fellow group member and friend, Linda. I told her how much I missed her at the meeting and asked how her treatments were going.  She didn't e-mail back but I thought that she was back in the hospital for another treatment.

On Thursday J texted me. She had just gotten off the phone with Linda's husband. Linda had passed away on Tuesday.

OMG! I couldn't believe it. Not another woman I had grown to care about taken too soon. I put my cell phone down and yelled "I hate this". My husband came over and hugged me as I cried. Memories came flooding back.

Linda and I had talked countless hours on the phone. She would call or text and ask me about trials.  We discussed parp inhibitors, surgery options and social security disability. We talked about our supportive husbands and the impact of our disease on our families.  I loved hearing her talk about the tap dance lessons she took and the recitals she participated in.  Over the 7 years we knew each other we attended a number of ovarian cancer awareness events. I finally got to meet her husband in person at a Survivors Day event last year.

Linda's  last text to me was before our April support group meeting. She told me it was ok for me to tell the group members about the secondary cancer she had, that she had been in the hospital and had broken her wrist. She finished her text with "I like you and trust you." I wrote back " I like you too. Hugs ". I will miss those phone calls and texts.

And... I will continue to text and e-mail J as she moves home and shares special times with her family. And I am hoping to make that trip to see her.


Dee
Every Day is a Blessing! 

Have The "Talk"

Updated 11/6/13
I am not referring to the "Birds and the Bees" talk we have with our young children although that one isn't always easy either. I am referring to having the end-of-life talk. I see many of you quickly moving on to a different website. But wait. Stick around. I know this is hard. It is rough writing about it as it is having the TALK.

You can talk about end-of-life issues before someone is ill or they are moving into an assisted living or need extra care at home but it seems in our society that doesn't happen very often. I think very few people feel comfortable because it hurts, no matter which side of the table you are sitting on.

Since my first surgery back in 2005 I have had an Advanced Directive. An Advanced Directive is a legal document that will provide your medical team with your care preferences if you are no longer able to make those decisions. In NJ there are two parts to the Directive, a Proxy Directive and an Instructive Directive.

The Proxy Directive, also known as the Durable Power of Attorney for Healthcare,  allows you to appoint a person to make medical decisions for you when you can't make them yourself. This can be temporary or long term and goes into effect only when you are not able to make the decisions yourself.

The Instructive Directive, also known as a Living Will, is a document that tells your health care team and your family what life-sustaining treatments you want or don't want under different conditions. Life-sustaining treatments include any device or procedure that would extend your life by taking over the function of some body organ. The treatments can include surgery, a ventilator, drug, therapy or providing fluids or nutrition.  Again, the document goes into affect when you are not able to make the decisions yourself.

Why am I even mentioning these documents? These documents are a good place to begin the discussion about end-of-life issues with your family and to get you to think about what you want to happen. I am a bit of a control freak so I worked out in my mind what I wanted to do before I spoke to my family. I hope it makes it easier for them and my health care team when the time comes. It is also a burden I don't want them to have to carry or feel guilty about later on.

Who do you trust to direct your care when it comes to health care decisions? Is that person comfortable being your health proxy? Ask them. And be sure to discuss with them the situations you may face and make them aware of the times when you want life-sustaining treatment or situations when you don't. I have a second proxy lined up if my first proxy for some reason can not make the decisions at the time I need them to be made.

Now think about under what conditions you want life-sustaining treatment. What treatment do you want or not want if you are permanently unconscious? What treatment do you want or not want if you are terminal? Do you want a treatment if it will only prolong imminent death? Or do you want a treatment if it may be ineffective? Or if your condition is irreversible and the treatment may have little benefit do you want the treatment ? You can even pick and choose treatments under different conditions . For example, you want fluids and nutrition but not surgery.

You don't need a lawyer to fill out these forms. Many are available online.  Make sure your family knows where your documents are located. You can always update the directive at any time for any reason. Just make sure you and your health care team are working with the most recent document.

If you live in NJ take a look at this site for more information and copies of the documents you can print out and fill in. http://www.state.nj.us/health/advancedirective/index.shtml

Additional information on end-of-life and palliative care may be found here on the CancerNet site.

I know the talk I had with my husband back in 2005 was not easy but I feel better knowing I have a plan in place.

Dee
Every Day is a Blessing!

Laurel of Arlington a Woman of Teal

Late Saturday night I learned that Laurel died from ovarian cancer.

I never met Laurel in person.Yet,  I felt as close to her as if she lived next door. Laurel was a online friend. I met her through a very special Facebook group which includes women from the UK and the US. What binds this diverse group of women is a diagnosis of ovarian cancer. We celebrate the good times and sadly we share the pain of loosing a member.

I can't share what we talk about in our group - it is confidential. What the group does best is listen - well in the case of our group read - what each other has to say. With the time difference between the US and UK there is usually someone online ready to listen and respond.  Sadly, that meant Laurel wrote and we all read her post saying that there were no more options for her. And we read when another in our group had to share the news that Laurel had passed.

Here is what I can share about Laurel. She was a single mother of two girls. She lived in Texas and was only a few months shy of turning 32. Yes, she was just 31 years old. Too young for this disease you say? I agree but sadly it happens. And as cliche as it sounds she was a fighter for herself and her daughters.

People often ask me why I spend so much time advocating for ovarian cancer survivors and funding for ovarian cancer research.

Here is yet another reason- Laurel Phillips. Rest in Peace my friend.

Dee
Every Day is a Blessing!