Monday, February 2, 2015

From the Past to the Present

In 2005 when  I was first diagnosed I didn't know about ovarian cancer or its treatment. I remember looking online at the Barnes and Noble website for books related to ovarian cancer. I wanted to know what all the medical terms meant and what to expect from chemotherapy and loosing my hair. Most of the books I saw online were written for medical professionals. Then I found 100 Questions and Answers about Ovarian Cancer by Dr Don Dizon, Dr. Nadeem R. Abu-Rustum and ovarian cancer survivor Andrea Gibbs Brown. The reviews by patients were good so I ordered it.

When the paperback arrived I started to read through the first few sections on the basics, staging and treatment of ovarian cancer. Here were medical terms but this time definitions in lay terms were included. I underlined terms and sections I wanted to be able to find later and wrote notes in the margins.  Further into treatment, I read the sections on side effects and the CA-125 test. I highlighted what Andrea said about what she did about eating light small meals while in chemotherapy. I finished treatment and the book went on the shelf. 

When I recurred I once again referred to the section showing the various drugs used for chemotherapy. And then I was NED again and the book went back on the shelf. In 2010 when we moved to our new home the book came with me and went back on the bookshelf in the loft.

Dr Don Dizon is one of three health care moderators of the #gyncsm tweet chat, which I co-moderate. (Information about the #gyncsm community and chat may be found on our blog.) For a little over a year Dr Don Dizon's advice has helped to  develop the community and chat topics. I also learned about his work at Massachusetts General Hospital (MGH) Cancer Center and with the American Society of Clinical Oncology and of course his experience working with patients with gynecologic cancers.

A few weeks ago Dr. Dizon e-mailed me and asked if I would be willing to write the patient comments for the 3rd Edition of 100 Questions and Answers about Ovarian Cancer. As I read the e-mail I thought to myself "Gee the title of that book sounds familiar". So I went to my bookshelf , pulled out the book and saw that Dr Dizon wrote the book I used years ago. I flipped open the book and saw the notes and underlines I had made. It only took me a few minutes to check my calendar and answer yes to his request.

Then I went to work responding to the same questions the doctors had already provided medical answers to. I wrote about my symptoms,  my experience in a clinical trial and how I made the decision to treat my recurrence. I wrote about the members of my care team, dealing with the emotions of a cancer diagnosis and where I went for support.

When I wrote about loosing my hair I smiled to myself as I remembered the large beaded earrings I would wear with my scarves and hats. I also remembered the emotions I felt when I learned I recurred and when women in my support group died because of the disease.  It wasn't always easy to find the right words ( thank you "chemo brain") but after a number of edits ( 5-6) I finally felt comfortable sharing the answers with Dr Dizon. With his approval, last Thursday I submitted my answers to the editor at Jones and Bartlett Publishers.  I am honored to have been asked to share my experience with others and  hope that it will help women and caregivers as much as Andrea's comments helped me.

The book is scheduled to be published at the end of March. I'll be sure to let my readers know when it is available. 

Every Day is a Blessing!  


Anonymous said...

How exciting,


Nancy's Point said...

This is another fine example of collaboration between doctor and patient. I think it's wonderful that your comments will be included in the new edition. Undoubtedly, both you and Dr. Dizon will help many women through your efforts. Congrats to you both and thank you as well.

Dee said...

Thank you Susan and Nancy for your comments. It was truly a privilege to share my story in this format.


Renn said...

That is so awesome, Dee! When will the new edition be released? I have a close friend who was diagnosed with OC and she finds out her pathology next week.

Dee said...

Hi Renn,

Thanks! I'm honored to be part of this project.
It is scheduled to be published the end of March.
If your friend has questions she can contact me via e-mail.