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!

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