Tuesday, August 31, 2010

Do You Read "Conversations"?

Back in 2005 while I waited for my gyn -onc to give me the OK to have chemo, I picked up a newsletter. Conversations- the International Newsletter for those Fighting Ovarian Cancer was the first ovarian cancer publication I ever read. And I continue reading it to this day. ( Happy 17th Birthday Conversations!)

There are many helpful tips from other survivors, a calendar of events being held across the country and in June and December the issues are dedicated to long term survivor stories. I love those. But I think the best part of the newsletter is going to the inside page which lists survivors. Every July there is my name - Dee , NJ.

Thank you Don and family for continuing the publication Cindy started. You have touched the lives of many women.

For more info check out the Conversations website. Would you like a copy of the newsletter? Fill out the form on their website or contact Don at :

P.O. Box 7948
Amarillo, TX 79114-7948
United States of America

Phone: (210) 401-1604
Fax: (210) 247-6169

Every Day is a Blessing!

Sunday, August 29, 2010

We Survivors are "Companions on a Journey"

What a beautiful Sunday !
The closing hymn at mass this morning was by Carey Landry, Companions on the Journey.( Lyrics located online at Seasons of the Spirit. ) I listened closely to the words and on the way back to Theresa's house I thought about the connections I have to other women who have been diagnosed with ovarian cancer.

"We are companions on the journey,
breaking bread and sharing life;
and in the love we bear is the hope we share "
We survivors share a hope.

"We have been gifted with each other,"
I know it sounds corny but every one of the women I have met have been a gift in my life. I celebrate as friends get good news and cry with others when the news is not what they expect.

"We will seek and we shall find"
Online and in support groups we seek the help of other survivors and social workers and they are there for us.

"to walk side by side with hope in our hearts, "
We do walk side by side with each other.

Yesterday, when we were out ,we passed an electronic billboard on Rt 70 advertising the Vicki Welsh Fund 6th Annual Whisper Walk for Ovarian Cancer to be held September 26th in Kansas City, Missouri. It was great seeing awareness being raised all over the US. And here I was 1000 miles from home and yet I felt a connection to all the women in Missouri and Kansas who are companions on this cancer journey with me.

Every Day is a Blessing! And I "believe in the love of our God".

Tuesday, August 24, 2010

2nd annual Spokes of Hope: A Cancer Advocacy Ride

My friend , kidney cancer survivor Dr. Ken Youner is the founder of the Cecile and Ken Youner Fund for Cancer Research. The fund has raised $28,000 so far and has supported Dr. Amato Gracia a cancer researcher at Stanford University.

From Ken's e-mail-
"On Sunday, Oct 10, 2010 you have the opportunity to do three of your favorite things. Ride your bike, eat, and yes help support those of us fighting cancer and help directly fund cancer research (OK 4 things). Join the Spokes of Hope: A Cancer Advocacy ride (meet time 8:30AM in front of hospital) at Englewood Hospital-in Englewood NJ 07631. We will then ride to the John Theurer Cancer and the Tomorrow Childrens Fund at Hackensack University MC in Hackensack NJ of course. We then ride back to NYC via the GWB and enter Central Park for a loop to The new Tisch Cancer center at The Mt Sinai MC on Madison Ave and 96th St. The ride is in memory of my beloved wife Cecile who died in 2008 of acute leukemia while battling stage 4 breast cancer. "

If you are in the NJ/ NY/ Conn / PA area and a cyclist who wants to ride for a reason please join Ken. More information can be found here.

Every Day is a Blessing!And my life has been blessed by having survivors like Ken as friends.

Monday, August 23, 2010

Just 5 words

I belong to a number of online groups for ovarian cancer survivors. Over the past 5 years, I have grown as close to these women as I have the women in my support group.

A fellow ovarian cancer survivor on one of these lists asked us to use 5 words to describe our life as a OC survivor. Here were my suggestions:

More research dollars desperately NEEDED!
 Finding strength to keep fighting.
 Treatment + Doctors+ Faith+ Family = Survivor
 Teal sisters talking- Please listen.

Every Day is a Blessing! - Well look at that ....5 words

Saturday, August 21, 2010

A Zeal for Teal Brunch- Celebrating Ten Years of Kaleidoscope of Hope Foundation

The Kaleidoscope of Hope Foundation is celebrating ten years of passionate advocacy and raising funds for ovarian cancer research by hosting A Zeal for Teal Brunch on October 10,2010.The event will take place at the Hyatt Regency in New Brunswick, NJ.

The Foundation will present honor doctors dedicated to the care and the treatment of women diagnosed with ovarian cancer. They are George Coukos, MD, PhD, Director, Ovarian Cancer Research Center, University of Pennylvania Abramson Cancer Center, Lorna Rodriguez, MD, PhD, Chief of Gynecologic Oncology, The Cancer Institute of New Jersey, Brian Slomovitz, MD, Gynecologist Oncologist, Carol G. Simon Cancer Center, Daniel H. Smith, MD, Gynecologist Oncologist, John Theurer Cancer Center at Hackensack University Medical Center, Mario M. Leitao, Jr., MD, FACOG, Memorial Sloan-Kettering Cancer Center and Darlene Gibbon, MD, Clinical Director of Gynecologic Oncology, The Cancer Institute of New Jersey.

The MC will be Jenny Allen . Jenny is an ovarian cancer survivor and writer/ performer of the show "I Got Sick Then I Got Better" . I wrote about the show after seeing it earlier this year.

The event will include the brunch, entertainment, a 50/50, and silent auction . Check the KOH website for information about attending and sponsorship opportunities. Cost to attend is $50. All proceeds from the event will be used to support the mission of KOH to support ovarian cancer research and to raise awareness of the disease.

I am proud to be a part of a NJ based organization that has done so much in its first ten years to raise awareness and funds for research.

Every Day is a Blessing!

Wednesday, August 18, 2010

BEAT comes to the US

Back in February of this year I wrote about the BEAT Campaign in the UK which is the awareness campaign for OVACOME. ( Bloating, Eating , Abdominal , Talk)

I just knew it was a catchy way of remembering symptoms. OCNA, NOCC, GCF and OCRF launched a "Recognize the signs & BEAT Ovarian Cancer Campaign" ( Bloating, Eating, Abdominal , Trouble) for September , Ovarian Cancer Awareness Month in the US. See the poster above.

I hope to hear that the BEAT campaign has made a difference in raising awareness of the symptoms of OC. Women need to know what symptoms to look for- and remember all women are at risk for OC - young, middle age and mature.

Every Day is a Blessing!

Saturday, August 14, 2010

"Get Back Up Again"

For the past few days I have been thinking about two friends of mine.

A and C learned in the last week that they have recurrences of their gynecological cancers. I met both of these women about three years ago at two different support groups for gynecological cancer survivors. In these group settings we have laughed together, shed some tears together and celebrated when we became disease free. We e-mail each other between group meetings with updates and jokes.

Their recurrences have gotten me thinking about how I felt when I recurred, the thoughts that went through my mind and my switch back in to cancer fighting mode from the new normal I found as someone in remission. Oh, and lets not forget how terrible I felt for having to put my family through yet more rounds of chemo. I remember my loss of freedom and control due to my surgery and chemo. I really hated having to postpone seeing people and not eating certain foods because of low counts.

So to my two strong friends and all women in chemo I offer these verses of the song "Get Back Up Again" by Toby Mac because you all know that your family and friends are here to help you get back up.

You turned away when I looked you in the eye,
And hesitated when I asked if you were alright,
Seems like you're fighting for your life,
But why? oh why?
Wide awake in the middle of your nightmare,
You saw it comin' but it hit you outta no where,
And theres always scars
When you fall that far

We lose our way,
We get back up again
It's never too late to get back up again,
One day you gonna shine again,
You may be knocked down,
But not out forever,
Lose our way,
We get back up again,
So get up, get up,
You gonna shine again,
Never too late to get back up again,
You may be knocked down,
But not out forever ...

Every Day is a Blessing!

Saturday, August 7, 2010

SRA Reading Programs and Chemo Brain

When I was attended Catholic elementary school we used the SRA reading program. It was an individualized reading program where you read a short story and answered multiple choice questions to check your reading comprehension. After completing the stories at one color level you would move on to the next color level. I remember the goal was to get to Purple (or was it Gold?) at your grade level and move on the next grade's program.

I loved to read back then and still do. One of the first things I did when I moved to our new home was to sign up for a Mercer County library card. Hightstown has this quaint brick library right by Peddie Lake. I've visited it a number of times since we moved in. I've borrowed cookbooks, novels , and a book on the history of Hightstown.

During my last visit to the library I noticed a book called A Kingdom Strange The brief and tragic history of the lost colony of Roanoke. I borrowed it because it deals with a similar time in history and region of Virginia that my son has researched for his master's thesis in history.

So I started to read it. I read the first 5 pages on the first day, started over on the second day and read the first 5 pages and 15 more. The next time I picked up the book a few days later I had to go back and read over the previous 2 pages to get my place. Frustrating. I noticed over the past 4 years that I can't remember details of what I read as well as I used too - I used to be a "Purple" level reader. I can remember themes but those details - character names, dates - they just are difficult for me to remember. Before I wrote the post on the Elizabeth Berg character I reread the last 5 chapters of the book. When I spoke to my son I told him I was reading the book. I also mentioned that I didn't know that the leader of the Roanoke colony committed suicide because he left the colony to get aid and when he returned everyone was lost. My son said " Mom - I wrote about that in my thesis" . I read his thesis about fear in Jamestown in the early 1600's twice so I was a bit upset that I did not remember that big detail.

I know that I am more easily distracted now. I need to write myself notes to remember to do things and I've started to take notes on long articles & books that I read so that I can remember content better. Maybe I don't remember because I am trying to do too many things at one time or that I am getting older. But I think a big portion of not remembering what I read is chemo brain. I seemed to have gotten worse after finishing the chemo for my recurrence.The American Cancer Society has an interesting page on chemo brain. I experience many of the symptoms listed there. As cancer survivors live longer we sure need more research into the issues of what causes chemo brain and ways to prevent it.

I enjoy reading too much to give it up so I'll just keep plugging away even if I am back at the "orange " level. I'll just reread things if I have too. And keep correcting and revising things that I write.

Every Day is a Blessing! I am blessed because I still have good eyesight and can read- even if I don't always remember what I read.

Thursday, August 5, 2010

Supporting the Financial Needs of Women with OC

The recent One Force To Make a Difference Symposium brought together ovarian cancer organizations in the NJ area. I learned about a foundation that goes beyond awareness campaigns and supporting research but also provides financial support for women diagnosed with ovarian cancer. The foundation was started in 2009 to honor the memory and legacy of Mary Anne Mazanec, a teacher and volunteer.

The Mary Anne Mazanec Ovarian Cancer Foundation 's mission is : "to provide assistance and support for patients and families in the area affected by ovarian cancer; to support the cancer research efforts of Dr. George Coukos at the Abramson Cancer Center of the University of Pennsylvania; and to promote awareness of ovarian cancer."

If you know a woman in the NJ area who would benefit from the support of the Foundation please fill out the Financial Assistance request form found on this page.

Thank you to the family and friends of MaryAnne Mazanec for supporting the needs of women with ovarian cancer.


Every Day is a Blessing!

Tuesday, August 3, 2010

Elizabeth Berg and her Special Character

I am a fan of the author, Elizabeth Berg. I just finished a book by her called The Last Time I Saw You. The story is about people who get together for their high school reunion- their 30th if I recall correctly- and their expectations of who they each became.

I didn't expect it when one of the characters, a women named Candy, learns she has ovarian cancer shortly before the reunion. I don't want to go in to a lot of the details about her reaction to learning about her diagnosis ( in case some of you want to read it) but I will say I can totally get how she felt. I must admit that I was a bit afraid as I got further in to the book that Candy would die. Instead at the end of the book we see Candy go to her doctor for a follow-up visit and again Elizabeth Berg accurately portrayed her anxiety but also her hope for the future.

Thank you Elizabeth Berg for portraying an OC survivor in your book. So if you haven't read The Last Time I Saw You borrow it from the library or buy a copy and give it a read. And if you did read it what did you think about Candy?

Every Day is a Blessing

Monday, August 2, 2010

A Wedding , Christening and Friends

This weekend was a busy and fun one. The bonus was that Terry came to visit for the weekend.

On Saturday we went to the wedding of a family friend. Mike and Sinead were in the same class in elementary school until fourth grade. Then Sinead and her family moved. Fast forward to almost 20 years later. Sinead's sister "friends" Mike's sister on Facebook. And shortly thereafter Mike and Sinead started to date. Yesterday they married in a beautiful ceremony and celebrated at a reception that included family from as far away as Ireland, Irish step-dancing, lots of music and a candy table. The phenomenal wedding cake resembled the black,white and yellow pattern on their invitations and was either lemon or orange flavored- depending on the layer.Delicious.

On Sunday, we attended the christening of Adina. She is the two-month old daughter of my daughter's best friend, Beckie. My daughter was honored to be chosen as Adina's godmother and we were all invited to the ceremony and party after. I was pleasantly surprised to find that the priest who performed the christening was one that we knew from fifteen years ago and haven't seen in about 6 years. He knew both my children when they were in elementary school and here he was speaking to my daughter about the role of a godmother. He spoke to the parents about how wonderful it is to look at their baby's hand and imagine what those hands can do in the future. To look at their feet and wonder where those feet will take them. He asked how will those hands do the work of God? Yes, if the parents show them God's love. There certainly was a lot of love for Adina from her family and friends.

This weekend showed just how people from your past can come back into your life at any time and in some very special ways. Best wishes to Mike and Sinead and for Beckie, Morgan and little Adina.

Every Day is a Blessing !