Tuesday, May 17, 2016

Mixed Emotions

Sometimes I find myself so deep in my advocacy work and spending time with family ( my son and his wife visited for a few days)  that I don't have time to write blog posts. I apologize to my readers. 

This past weekend, I attended events for two ovarian cancer organizations. The Teal Tea Foundation (TT) held their 10th Anniversary Gala on Saturday.  And the Kaleidoscope of Hope (KOH) Foundation  held their Annual Awards Luncheon on Saturday. Both NJ based foundations raise funds for ovarian cancer research and awareness.

But in the post will not be writing about the wonderful work these foundations do each and every year.  Rather, I want to share how I felt as one of the survivors in the room.

When I arrive at each one, I am proud. Proud to be involved in organizations that are making a difference.  I am hopeful. Hopeful for the future as I listen to the researchers talk about their work.  Yet, I am sad. So sad that I at times I have to hold back tears. 

Why? You're healthy you say. You should feel good. Yes,  that is true but surviving without your friends by your side is difficult at times.

My friends, three in particular, whose lives were lost due to a gynecologic cancer, were missing from these events - Anne, Shari and Carole. But do you know who was there? Their husbands - Don, Dave and Bob.

I watched the faces of these supportive caregivers as their wives were honored and again as they watched survivors receive a special gift. I glance at my husband who had that look - knowing that he was thinking how it might have been him. 

Don't get me wrong it was wonderful to see Don, Dave and Bob. They knew me during those "no Hair Days". But I got well and their wives did not. So in a way the relationship changed.

It is hard to describe the nervousness and funny feeling I get in the pit of my stomach when I first see these men.  Sometimes I worry about what I will say. Do I remind them of a time filled with pain? I'm not sure what I am feeling - survivors guilt maybe?

I haven't seen Don since last year's TT event. We reminisced over the times he brought Anne to support group because she wasn't well enough to drive herself. He told me how he loved hearing all of us laugh at those meetings as he sat in a nearby lounge. That funny feeling started to go away.  Don smiled as I told him about the heron who regularly visits the pond behind my home. Anne loved herons and asked that we think of her when we see one. I think of her a lot. 

It took me until the last 15 minutes of the TT Gala to walk up to Dave. Shari passed away July, 2014. Like Don, the last time  I saw him was last year's TT event.  I walked up to him and said, " I was friends with... " he stopped me mid-sentence and said "Sure I know who you are. Dee, how are you doing?"  and I got big hug and the funny feeling went away. We talked about our families and he repeated more than once how strongly he feels that supporting research is the only way we can make a difference in the lives of women diagnosed with ovarian cancer. I totally agree. Together we are focused on finding a cure.

I've seen Bob a number of times since Carole passed away in February. We both now serve on the Board of KOH. One of the reasons I returned to the Board of KOH was because of Carole and her dream of finding a detection test and a cure. I am happy that I will be working with Bob because we are on the same page when it comes to the importance of research . Seeing him more frequently  keeps the funny tummy feeling from kicking into high gear. 

At events like these two I especially feel the loss of these women but I am glad that I have the chance to see their husbands and families, even if it means I feel such mixed emotions.

I know there are bereavement groups but does anyone know of a group / organization the reaches out to the countless partners, spouses and family members whose loved ones lives were taken by ovarian cancer?

Every Day is a Blessing! Blessed to know that Teal Tea and Kaleidoscope of Hope Foundations are focusing their efforts on research.

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.

Monday, March 28, 2016

Our Voices Were Heard at The SGO Annual Meeting

As you know I was not able to attend the SGO Annual meeting in person but followed the research news and announcements on Twitter. Annie Ellis, a friend and fellow ovarian cancer survivor did attend the meeting. In my two previous posts on the meeting, I included a number of her in-person tweets. 

But Annie was more than a research advocate in attendance, she was a co-author of the presentation  "Survivors Acceptance of Treatment Side Effects Evolves as Goals of Care Change over the Cancer Continuum" presented by Dr Melissa Frey, NYU Langone Medical Center.

There are a number of meaningful endpoints in clinical trials - overall survival (OS), Progression Free Survival (PS), patient reported outcomes (PRO) and quality of life (QOL). In September 2015, an FDA workshop was held on alternative endpoints. The study presented at SGO by Dr Frey brought focus on the patients perspective on these endpoints.

Melissa Frey MD, Annie Ellis, Laura Koontz PhD, Savannah Shyne MPH, Jing-Yi Chern MD , Jessica Lee MD and Stephanie Blank MD undertook this study to determine whether survivors’ acceptance of treatment side effects changes over the course of living with the disease (NED, recurrence). To do this, Annie Ellis developed a survey and reached out to the ovarian, primary peritoneal and fallopian tube cancer communities for responses to questions related to treatment side effects and patient goals. Over three hundred women participated in the survey. I was one of those 300 women.

45% of the women had a treatment goal of overall survival
41% of the women had a treatment goal of quality of life
12% of the women had a treatment goal of progression free survival
2% of the women did not respond to the question

In response to the question "What is most meaningful to you"  most women chose either overall survival or ability to engage in daily activities.

The overall response to the questions "When asked what they expected from treatment" appears below.

When you separate out the responses of women who have had a recurrence 16% expected a cure and 53% remission. These findings are significant.

Participants were then asked what side effects they would tolerate to get a cure, remission or stable disease. This slide summarizes those responses.

Looking at just those women who have recurrent disease ( n-162) whose expectation is a cure their responses to what side effects they would accept are presented on this slide.

In conclusion:

I look forward to the development of the survivors' decision tool.

Did you take part in the survey? Were the results what you would have expected?
If you didn't participate, which side effects would you tolerate to get a cure, remission or stable disease?

Thank you Annie and all the co-authors for asking women diagnosed with ovarian cancer to share their expectations with the gynecologic oncology cancer community, for reporting those results to the community and for allowing me to share parts of the presentation with my readers.

Every Day is a Blessing! Blessed to have engaged ovarian cancer research advocates like Annie Ellis working with researchers dedicated to understanding the needs and expectations of survivors.

Wednesday, March 23, 2016

SGO News via Twitter - March 21-22

I appreciate the use of the #sgomtg hashtag by those advocates, gynecologic oncologists and researchers attending the SGO Annual meeting. It has allowed those of us unable to attend to stay on top of the research that can impact the lives of women with a gynecologic cancer.

This blog will cover tweets from the meeting dates March 21-22, 2016 .
The presentation by Dr Frey will be covered in a separate blog post.

You may find more information on enhanced recovery pathways in this journal article. (Enhanced Recovery in Gyneocologic Surgery http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3913481/ )

CSC= cancer stem cell

Thank you to all the researchers who consider the needs of their patients as they develop better treatments, detection tests and a cure.

Every Day is a Blessing! 

Monday, March 21, 2016

SGO News via Twitter - March 19-20

Since I was unable to go to San Diego for this year's annual  SGO ( Society of Gynecologic Oncologists) meeting, I've been following the meeting's hashtag #sgomtg on Twitter instead.
Here are the tweets I favorited for the March 19-20th. 
ctDNA - Circulating DNA(https://www.genome.gov/27556716)

SNP = single-nucleotide polymorphism ("most common sequence variation in the human genome is the stable substitution of a single base" (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2410167/)

I appreciate the ability to have interactions with the gyn oncs and other advocates attending the meeting.

Check back on Wednesday for the tweets I found most interesting for the last two days of the meeting.

Every Day is a Blessing!

Thursday, March 17, 2016

ASCO's The State of Cancer Care in America (2016) and Clinical Cancer Advances

I have been busy spending time with family the past few weeks. The blog posts should be more regular going forward. Thanks for understanding. 

ASCO ( American Society of Clinical Oncology) produces a number of important reports each year of interest to survivors, advocates and caregivers.

The State of Cancer Care in America 2016  reports on the trends in oncology care in the US. The report found that there is a  shortage of oncologists in rural areas, there remains inconsistent insurance coverage for cancer patients and the cost of cancer care continues to rise.
Below is an infographic which summarizes the information and recommendations made in the report. You may read the full report here.

The second report of importance to survivors is Clinical Cancer Advances 2016. For the past 10 years, ASCO has been producing this annual report. Earlier this year ASCO asked advocates and survivors to share how advances in research impacted their lives. You may read the report here.  I was honored to have my story chosen to appear in this year's report . You may find it on Page 41 ( 43 in a pdf reader).

Every Day is a Blessing!