Sunday, January 31, 2016

My Extraordinary Healer

Over the past few years I have read CURE® Magazine. I have especially like reading the the stories written by patients about their relationships with their oncology nurses. The Magazine runs a contest in which patients nominate their oncology nurses for the Extraordinary Healer® Award for Oncology Nursing. Contest finalists attend the Oncology Nursing Society's (ONS) Annual Congress where the winner is announced.

Last year,  I decided it was time for me to write about my relationship with Carla, one of the many special oncology nurses at the Rutgers Cancer Institute of New Jersey. Although we didn't win the contest we were still honored to have my nominating essay as part of the collection shared in  CURE® Magazine's book,  extraordinary healers volume 9.  CURE® produced the book with the support of Novocare, Takeda Oncology and Amgen. Thanks Novocure, Millenium Takeda Oncology and Amgen for supporting this project.

Cover Vol 9 extraordinary healers
My essay / photo of Carla and I

My Essay page 2

Imagine how happy I was when I turned the book over and saw this quote from my essay. 

"What makes an extraordinary nurse? One who listens to their patients during their very first treatment and provides excellent oncology care - with a large dose of compassion when the unusual occurs."

Carla certainly made a difference in my chemotherapy experience. She is more than my nurse she is my friend.

If your life has been touched by an amazing, compassionate oncology nurse I urge you to nominate your nurse this year for CURE® Magazine's Extraordinary Healer® Award for Oncology Nursing.
For more information please see: 

Every Day is a Blessing! And my life was blessed by Carla.

Monday, January 11, 2016

More than just BRCA1 & 2

Most women diagnosed with ovarian cancer have heard of the link between germline mutations in the BRCA 1 & 2 genes and ovarian cancer. The Society of Gynecologic Oncology recommends that all women diagnosed with ovarian cancer have genetic testing for those mutations. Studies have also found that Lynch Syndrome ( formerly known as “hereditary nonpolyposis colorectal cancer” (HNPCC) ) places a women at increased risk for ovarian cancer. I wrote about these germline mutations in a blog post in September 2015.

On December 30, 2015 JAMA Oncology journal published the article

Inherited Mutations in Women With Ovarian Carcinoma

This study of 1915 women looked at the importance and prevelance of other germline ( passed from parent to child) mutations associated with ovarian cancer.

They found that 18% of the women studied carried
"pathogenic germline mutations in genes associated with OC risk. PALB2 and BARD1 are suspected OC genes and together with established OC genes (BRCA1, BRCA2, BRIP1, RAD51C, RAD51D, MSH2, MLH1, PMS2, and MSH6)"

So we now have 11 genes suspected of causing hereditary ovarian cancer. (Since the article is behind a paywall I could not access the complete study.) A commentary on that research can be found here. The commentary raises the issue that the mutations to BRIP1, RAD51C, RAD51D  and BARD1 have not been well characterized and have uncertain clinical use at this time when compared to BRCA 1 & 2. 

The commentary states that investigators should look at "different paradigms for identifying key new factors and mechanisms underlying OC risk" I look forward to those studies.

Every Day is a Blessing! 

Additional Sources:
Ovarian Cancer Risk and Prevention
Lynch Syndrome
Hereditary Breast and Ovarian Cancer

Friday, January 1, 2016

Here We Come 2016

I had a wonderful 2015. I attended my son's wedding, raised over $3000 for ovarian cancer research at Rutgers Cancer Institute of New Jersey, and walked a 5K at Disneyland with my daughter to celebrate my 10th cancerversary .

I spent lots of fun times with family and friends. But there were some more challenging times too. My husband had some health issues and a surgery and I dealt with a knee injury, neuropathy and chemobrain. I also said farewell to three women who I met through an ovarian cancer support group and the Graceful Hope Foundation - Jeanne, Linda and Corinne. I know this sounds corny but I do feel blessed to have lived another year. 

For the past few years my first post of the new year includes a list my aspirations for the coming year. Resolutions are so 2010. I looked back at the aspirations I made at the beginning of this year. It seems like most of the things I looked forward to doing last year (in italics) are what I still want to do this year so I'll repost the list and add some new items.
  • Continue to visit my children and grandchildren(Visiting my grandsons will be more difficult after they move overseas in May.)   
  • Visit India
  • Continue to advocate for ovarian cancer patients and research through this blog and the #gyncsm community
  • Learn more about non-profit management and social media 
  • Apply to attend the Biennial Survivorship conference and ASCO annual meeting
  • Help my dog, Amber, achieve her Excellent title in Standard Agility ( Amber did get her AKC Excellent title in Jumps with Weaves)  
  • Register Amber for UKI agility
  • Continue to increase my physical activity and flexibility so that I can be a better dog handler and improve my health
  • Continue to paint (Would love to try my hand at trompe l'oeil and pieces of furniture)
  • Visit the state of Maine
  • Take an online course - maybe art history, public health or theology
I hope the year ahead is filled with lots of adventure and few doctor visits for all.

Every Day is a Blessing!