Tuesday, April 26, 2016

A Rudderless Ship

In a recent #gyncsm chat we asked the question,
What needs and concerns did you have when you were first diagnosed and treated? How were they addressed? What was lacking?

My response was
Most lacking was when treatment ended the first time. I was a rudderless ship. Looked for other women dx for support

I was great at staying on track with treatments and blood work and CT scans. Don't get me wrong it wasn't easy but I was focused on what I had to do.

Then I finished chemotherapy number nine and saw my gyn onc. She did her exam , checked by blood results and CT scan and said "See you in a month" What? That's it. After spending multiple 8 hours days each month for seven months at my cancer center, I was set loose. What do I do? Where do I go now? Sure I was happy to be disease free but I was worried about a recurrence. I didn't know how to live having had cancer.  My ship lost its' rudder.

I still needed a two hour nap every afternoon. My hair was not even at the peach fuzz state. I was pale and lacked eyebrows and eye lashes. I couldn't concentrate and reread many chapters in every book I attempted to read. There was only 2 month left in the academic year but I was still too exhausted to go back to teaching and work an 8 hour day. That would have to wait until the fall.

I started to research what others had experienced. I was thankful to find the book  Dancing In Limbo:Making Sense of Life After Cancer. I felt much better after finding out that I wasn't the only one who felt lost after treatment. I also found a local chapter of the National Ovarian Cancer Coalition (NOCC) and at their monthly meeting became friends with other women who were out of treatment. I found the classes and workshops and networking groups at the Cancer Support Community of Central NJ helped me move into my survivorship stage more smoothly.

I so wish someone had handing me an information  sheet about the physical changes I would experience or continue to experience after chemotherapy. But more importantly I wish someone would develop a survivorship plan with advice on dealing with the emotional and mental issues too.

What was the hardest thing you had to deal with when you finished treatment? 

Wednesday, April 6, 2016

Is Cancer A Gift? A Book Review

Have you ever been asked if cancer was a gift?  I’ve thought about how I would answer the question many times. Sometimes I say, yes it has been a gift of sorts. It is not one I would buy myself but having cancer has certainly gifted me with a number of wonderful relationships and opportunities that I would never have had without my ovarian cancer diagnosis. Other times, I think cancer is the worst part of my life. I hate it and the organs it has taken, the lives it has taken, and the pain it still inflicts ten years later. 

Nancy Stordahl (@NancysPoint) writes the blog, Nancy’s Point (www.NancysPoint.com). I‘ve followed her on Twitter and read her blog for a few years. Recently she published a memoir about  being diagnosed with breast cancer. Nancy decided to take on the question of whether or not cancer is a gift not only inside her book but in it's title, Cancer Was Not a Gift & It Didn’t Make Me a Better Person

Why would I, an ovarian cancer survivor, want to read a book about breast cancer? What I’ve found over the past ten years is that regardless of the type of cancer, the lives of a person diagnosed with cancer or who had a loved one diagnosed with cancer have many things in common.  I also have a personal connection with breast cancer. Both my sister and my maternal aunt passed away from the disease. Lastly,  I wanted to hear Nancy's reasons for stating cancer was not a gift in her title. I already knew she disliked the term journey. (I use the term journey all the time to describe the time since my diagnosis ten years ago.)

Last week, I picked up the book and began reading. It was as if I had met Nancy for a cup of tea and she was telling me about herself  growing up, falling in love, facing her mother's cancer and her own. Although we grew up in different parts of the US our childhoods were similar. She was the youngest of three sisters as was I. We differ in that she had a younger brother.  Early in the book she described weaving Juicy Fruit gum wrappers into chains. I remember doing the same thing. I could smell the sweetness of the gum as I read that part of the book.  That was it , I couldn't put the book down.

Nancy chose to not only write about her breast cancer diagnosis (2010) in this memoir but also her mother's breast cancer diagnosis (2004).  She poignantly describes her mom's experience. She talks about learning of the BRCA2 mutation in her family and the impact this knowledge had on her and her family.  Reading the book you can feel the love Nancy had for her mother and how important it was for Nancy to be at her mother's side as her health declined.  Once again I felt this strong connection.  I thought about the last few days of my Aunt Dora's life. I also felt this strong need to be with her till the end. It just so happens that her mother's birthday is the same day as my Aunt's birthday - June 8th.

When Nancy learns that she has breast cancer she shares with the reader her darkest feelings of loneliness and fear.  She expresses her concern about hair loss and ability to work during treatment and she grieves the loss of her breasts in a way that we all can relate to. But her book is not gloomy rather it is frank. It is a story of a life. The loving relationship she has with husband and family is weaved into her story. Her need to protect them from the damage being caused by the "Deleterious  Mutation" and to have them understand her feelings of loss and fear is apparent. As is her love of her two dogs, her " secret keepers " who console her as she cries. 

She speaks about her role as caregiver and as patient.  She describes the waiting rooms with "answers to cancer in tidy 4x8  pamphlets. " and  how patients are asked to be "more adaptable than machines". She describes the actions of the doctors and nurses who get it right. And points out the ones whose don't.  A quick, "You'll be fine" on exiting the room may not be what a patient needs to hear. You are so right, Nancy.

I could go on and offer you more examples of why I loved this book so much but I want you to go to the order page on Nancy's site, order it, read it. This way you can smile, laugh and cry like I did as Nancy shares her story with you. 

"Cancer does not define me, not totally anyway." Very true, Nancy.

Every Day is a Blessing! Blessed to have Nancy share her story with the world.