Monday, January 27, 2014

The Friends You Make

I am a member of a private group on Facebook. We from the US and the United Kingdom and are ovarian cancer survivors.

Kim lived close to me in Delaware. Over the past 3+ years we became friends. Kim was a special lady.  When another woman in the group, L,  had problems getting insurance in her state Kim wrote a letter to the governor on her behalf. She spearheaded an effort to help L's daughters when she passed. She was always ready to offer support in any way she could. She gave me her list of favorite Bible quotes. Those that gave her strength and hope. Over time I learned she loved wrestling. I watch it with my husband on Monday nights. I remember a series of posts back and forth on Facebook about the wrestler Fandango in the WWE. She made me laugh.

This morning on Facebook I read that Kim succumbed to the disease. Although we had never met in person I felt the same way I did when I learned friends from my support group had passed.  The disease caused our paths to cross online and we became friends. My one regret. That I never got a chance to give her a hug in person.

Rest in Peace my friend.

Every Day is a Blessing! I am blessed to have had Kim in my life.

Friday, January 24, 2014

Biomarkers for Early Detection of Ovarian Cancer - Webinar

I plan on joining this webinar on Monday the 3rd. Thank you to Elda Rainey of Research Advocacy Network for sharing this information. 

You are invited to participate in an
EDRN Educational Webinar
February 3, 2014  at 1 pm EST
Biomarkers for Early Detection of Ovarian Cancer
Michael J. Birrer, MD, PhD
Principal Investigator, Early Detection Research Network (EDRN)
Director, Gynecologic Oncology Research Program
Massachusetts General Hospital Cancer Center

Registration is not required. To add this meeting to your calendar program (for example Microsoft Outlook), click this link:

To join the online meeting on Feb 3rd at 1 pm EST (Now from mobile devices!)
1. Go to
2. If requested, enter your name and email address.
3. If a password is required, enter the meeting password: Advocates$11
4. Click "Join".
Meeting Number: 732 681 403
Meeting Password: Advocates$11
To view in other time zones or languages, please click the link:

To join the audio conference only
1. Please call one of the following numbers:
Dial In Number: 1-240-276-6338
2. Follow the instructions that you hear on the phone.
Your Cisco Unified MeetingPlace meeting ID: 732 681 403

Every Day is a Blessing!  

Tuesday, January 14, 2014

"I'm free to be me and you're free to be you"

"This morning I was listening to my I-Pod and heard the song "Free to be Me" by Francesco Battistelli. The line gave me the prompt I needed to write this post. A post I have pondered writing since Sunday night when I read the first of two articles about cancer survivor and blogger Lisa Adams. But before I talk about Lisa let me tell you some things about my blogging experience.

When I was first diagnosed I didn't know any woman who had been diagnosed with ovarian cancer.  So that other women diagnosed with the disease would not feel alone and to keep family and friends up-to-date on how I was feeling I began writing this blog.  It is my way of giving back but I think I also write it for selfish reasons too. It helps me heal. When I write about the long term physical and emotional issues I experience as a cancer survivor it helps me come to grips with the situation.

I know there will always be people who will disagree with what I write here or what I post on my twitter account.  There were people who were unhappy with the treatment choices my healthcare team and I made. At times I may have written about things that are upsetting to others. It is as difficult for me to share the emotion I feel when a friend and fellow patient passes as it is for my readers to read the post. When I write about the frustration I feel with cognitive decline (chemo-brain) due to treatment there may be readers who feel I am just complaining.  After all as we age, don't we become forgetful?  When I describe the fear and anxiety I still feel eight years after diagnosis ,as I wait for CT scan and blood work results, do some readers want to tell me to "get over it already"? I bet some of them do.

At other times my posts have prompted discussions about the usefulness of the CA-125 test for the general population and whether or not Avastin should be approved for ovarian cancer patients. My goal in this blog is always to post the scientific facts and then add a dash of my take on the research. My readers have commented and sent me e-mails about a number of posts I have written. Many newly diagnosed women have e-mailed me about how my story gives them hope. Just as I have learned and been inspired by reading other patient blogs.

 I follow Lisa Adams, a metastatic breast cancer survivor on Twitter ( @AdamsLisa) .   Recently two authors wrote pieces about Lisa. I read the first article by Emma Keller "Forget Funeral Selfies. What are the ethics of tweeting a terminal illness" in the Guardia on Sunday night. Ms Keller thought Lisa over shared on twitter. Is over sharing unethical? When I recurred I wrote about removing my spleen and resectioning my liver, the recovery process, my scars, and each and every chemotherapy treatment including the one that put me in the hospital. I guess I over share on this blog. Are all cancer survivors who write or give talks about their experiences with surgery and chemo and radiation over sharing?  In my opinion, no. Does Ms Keller see any benefit to others? I don't remember reading that but can't be sure.  I would go back and reread the article but it has been taken down.

All I do know is what I have experienced. I have learned from reading about the experiences of other ovarian cancer survivors who had recurrences. I have learned from metastatic breast cancer survivors who I follow and have shared their thoughts on the #bcsm chat. Ms Keller is not forced to read Lisa's blog or follow her on twitter if what she reads makes her uncomfortable. It is similar to if you don't like what you see in a TV show don't watch it .

Ms Keller's  husband, Bill Keller  wrote an Op-Ed in the NY times titled " Heroic Measures" . In the article he tells us his father's death was humane.  Then he writes "my first thought was of my father-in-law’s calm death. Lisa Adams’s choice is in a sense the opposite.  " Yes, I know this is an op-ed piece and that is his opinion.  He has every right to it. But why choose Lisa? Why not one of the other patients who have metastatic breast cancer and share their story on social media. Why not speak to other women treated at Memorial Sloan Kettering or one of the other NCI comprehensive cancer centers? Why not simply talk about the culture in this country to keep on treating at all costs. I tweeted to Mr Keller: " might want 2 join the with (Tues 9:30pmEST) & Wed 9pmET to get a better understanding of EOL/Pall". That would be a great discussion and one we should have.

Later in the article Mr Keller  talks about the cost of aggressive treatment and even mentions the unknown cost of therapy dogs. I remember reading Lisa's tweet about the dogs. I was thinking how neat.  I wish I could train my dog to do that. But I digress. What about the benefit those dogs play in the quality of life of the patients as MSK?  By the way, Mr Keller most therapy dogs and their handlers are volunteers and visit patients at no cost to the patient or hospital.

What we should all learn from these articles is that ultimately the decisions we make about treatment, palliative care and  end of life issues and whether or not we share those decisions on social media are ours alone. No one should judge or ridicule those decisions.

After all  "I'm free to be me and you're free to be you."

Every Day is a Blessing!

Sunday, January 12, 2014

Learning About Cervical Cancer- #gyncsm chat

This past Wednesday, January 8th,  I co-moderated the #gyncsm chat. The topic of this month's chat was Cervical Cancer. We were so lucky to have Tamika Felder, a 12 year survivor and founder of Tamika and Friends and Katie Brown, survivor and Director of Support and Advocacy for Lungevity, share their cervical cancer experience with us. 

As a gynecologic cancer survivor I knew that the Pap test is for cervical cancer not ovarian cancer. I knew that almost all cervical cancers are caused by the Human Papilloma Virus. I even knew about the vaccinations available to prevent cervical cancer ( Gardasil and Cervarix). 

But this chat taught me so much more. Here are some of the key points I learned about . .

  • United States 2014 cervical cancer estimates - 12,360 est newly diagnosed cases of #cervca and 4,020 deaths
  • Worldwide estimates: 500,000 cases and 250,000 deaths per year. 
  • Any woman can get cervical cancer. 
  • Early stages have no symptoms.
  • Curable if caught early. Caught early with the Pap test.
  • The vaccination can prevent the disease.
  • Do you know where your Cervix is? Tamika mentioned that many woman don't know.
  • There is a stigma/ shame  associated with cervical cancer.
  • There are 4 types of HPV.
  • Only 1/3 of girls eligible for the vaccine have taken it. 
  • Treatment of cervical cancer can affect fertility. 
If you want to learn more and view some excellent resources check out the #gyncsm blog at 

Every Day is a Blessing! 

Thursday, January 2, 2014

Hello 2014

 I am happy and truly blessed  to be welcoming in 2014.  As I have written in the past I do not make New Year's Resolutions. I make aspirations instead. Last year they worked out pretty well.

Here are my aspirations for 2014:

Visit my children and grandchildren in Alabama and California.
Advocate for ovarian cancer patients and research
Attend some Agility Trials with my dog Amber
Create more paintings
Continue - or maybe increase- my physical activity.
Visit the state of Maine- the only state east of the Mississippi I have not yet visited

Looking forward to a good year.

Every Day is a Blessing!