Six Years and Counting

Today July 29th is my six year "cancerversary".

Six years ago today I awoke from surgery to hear the words " Dee, I am sorry . You have ovarian cancer . Stage 3". Wow, how my world has changed since Dr. R spoke those words. There were lots of bad times during and after treatment and when I learned I had a recurrence in 2008 but each of those bad times were followed by some pretty incredibly good times.

And I am still here. Thanks in no small part to my gyn-oncs at CINJ, my loving husband, my fantastic children, wonderful family and supportive friends.

I am loving every minute of this life of mine.

Dee

Every Day is a Blessing! Thanking God today for the blessing of life!

LiveSTRONG at the Y is now at the Princeton Family YMCA

Here is an e-mail from Denise at the Princeton Family YMCA>

"LIVESTRONG at the YMCA is a twelve-week, small group program designed for adult cancer survivors. This program fulfills the important need of supporting the increasing number of cancer survivors who find themselves in the transitional period between completing their cancer treatment and the shift to feeling physically and emotionally strong enough to attempt to return to their normal life.

Our goal is to help participants build muscle mass and muscle strength, increase flexibility and endurance and improve functional ability. Additional goals include reducing the severity of therapy side effects, preventing unwanted weight changes and improving energy levels and self esteem. A final goal of the program is to assist participants in developing their own physical fitness program so they can continue to practice a healthy lifestyle, not only as part of their recovery, but as a way of life. In addition to the physical benefits, the program provides participants a supportive environment and a feeling of community with their fellow survivors, YMCA staff and members.

YMCA fitness instructors work with each participant to fit the program to their individual needs. The instructors are trained in the elements of cancer, post rehab exercise and supportive cancer care. Our first program will begin on Monday, August 1^st and will run every Monday and Wednesday from 1:30pm to 2:45pm for twelve weeks.

The program is free for cancer survivors and the participants will have access to the YMCA facility for the full twelve weeks, not just on program days. We hope to add an additional class in the evenings sometime soon but at this time, we can only offer it during the day. I noticed that you are the Coordinator for MCCC so I hope that you will pass this message along to your local survivors. We welcome everyone at any stage in their cancer journey and they can contact me directly if they are interested in participating or learning more.

Thank you!

Best,

Denise

Denise Soto

Development and Communications Director

Princeton Family YMCA

59 Paul Robeson Place

Princeton, NJ 08540

609-497-9622 x209

Fax: 609-497-2140

dsoto@princetonymca.org

www.princetonymca.org

This is a fabulous program and I am happy to see it expand to Y's throughout the state of NJ.

Dee

Every Day is a Blessing!

"The Road less traveled by"

My cousin Marion invited me to her home on LBI( Long Beach Island,NJ) . So yesterday I decided to take a ride down to see her. When I lived in Edison I always just hopped on 287 to the Garden State Parkway to route 72 to get there. But now that we have moved there are a few different routes - Route 33 to the Garden State, or Route 33 to route 9, or Route 539 to 72.

I decided yesterday to take the road less travelled by. It was wonderful. I saw towns I had only heard of, I passed horse farms, landscaping businesses and a winery( Creme Ridge) . I passed through Fort Dix and the Greenwood Forest and eventually ended up on 72 west of the Garden State. It was a treat to take this back road.

When I came home today along that same road less travelled by I kept thinking how wonderful it was to travel this route. Even when I was stuck in a construction area in downtown Allentown I got a chance to look at the wonderful old homes.

We rush, myself included, to get to places we want to be and miss so much along the way. When I was in treatment I remember taking the time to stop and look at everyday things. I wasn't moving anywhere too fast those days so I tended to notice little things. I would sit out on the patio in Edison and just watch the birds and see how the wind bent the flowers and carried the leaves to the ground. But lately it seems that I haven't been doing as much of that although I do love to watch the ducks and heron in the pond behind my house.

So I urge you to take the out of the way route to where you want to go . It might take you longer but it will be worth the time. You never know what you might discover! And Thanks to Robert Frost for the line from his "The Road Not Taken"

Dee

Every Day is a Blessing! I am blessed that my cousin gave me the opportunity to take a road less travelled.

To See HeLa Cells and Read about Them

Last month when I attended Survivors Day at CINJ, I visited Dr Scotto's lab. At the end of the tour, Dr. Scotto told our group that she had set up a microscope so that we could view HeLa cells. HeLa cells are the cancer cells from Henrietta Lacks. I was thrilled to actually see these cells that in the right growth medium will continue to grow and replicate... and grow and replicate ... and grow and replicate . I remembered reading news articles about these cells and how they have been used for years in medical research from HIV to polio to cancer. Alongside the microscope was a copy of The Immortal Life of Henrietta Lacks by Rebecca Skloot.

A few days later I bought a copy of the book and began reading Henrietta's story.The book's author researched Henrietta and her family. Henrietta was a black woman who lived in Baltimore and died in 1951. But it was not until 20 years later that her family knew that HeLa cells were from Henrietta's cervix. The doctors never asked Henrietta or her family if they could take and use the tissue samples. The initial research happened before there were government regulations guarding our privacy and tissue use. I wish that more people knew her story and her cell's role in understanding so many diseases in the past 50 years. And her cells potential to help us understand so many more diseases will continue since researchers may purchase these HeLa cells today from ATCC, a private non-profit biologic research center.

When I entered my clinical trial I was specifically asked whether or not I would allow my tissue to be used for research. It is not easy learning you have cancer. Being given an opportunity to possibly help other women by allowing researchers to gain a better understanding of the disease by studying your cells, that was easy.

Thank you, Henrietta.

Dee

Every Day is a Blessing! I highly recommend that you pick up a copy of The Immortal Life of Henrietta Lacks and read it.

Lean On Me

I decided to take a walk this morning . The temps here in NJ have been in the 90's for the past few days so the earlier in the day the cooler the temperatures. I decided to walk downtown toward the Peddie School and then over the lake by way of the old green metal bridge. I love looking at the houses from the 1800's and the birds and squirrels by the lake. Believe me, I don't break any land speed records since my left foot ( darn numb toes) doesn't always cooperate. While walking I listen to music on my i-Pod.

Today the song "Lean On Me" came on. For those who don't know the song here are some of the words.

Lean On Me Lyrics

Songwriter: Bill Withers

Sometimes in our lives
We all have pain
We all have sorrow
But if we are wise
We know that there's always tommorow

Lean on me, when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
'Til I'm gonna need
Somebody to lean on ...

You just call on me brother, when you need a hand (Chorus)
We all need somebody to lean on
I just might have a problem that you'd understand
We all need somebody to lean on...


If there is a load you need to bear
That you can't carry
I'm right up the road
I'll share your load
If you just call me...

Call me (if you need a friend)
Call me (Call me)

Lean On Me Lyrics © Interior Music Corp

After hearing that song all I could think about were the ladies in my support group. We sure do lean on each other . Our little group facilitated by J. has been meeting since May of 2007. We have lost members to ovarian and endometrial cancer , members have gone into remission, members have had recurrences, members have been on standard treatment, members have been on clinical trials, and members have been on chemo after chemo with no "holiday".

Yet we continue to gather once a month. Why ? Because we need to be with others who know EXACTLY how we feel. Others who know the anxiety we feel when we are due for a test or when our CA-125 starts to rise. Others who have advice when our toes or fingers are numb. Others who can describe what it is like to have brachytherapy. Others who can recommend a doctor who practices acupuncture.

We listen to each other. We ask each other questions. We cry when the news is bad. But we also celebrate and laugh. Yesterday we cheered one woman who had finished treatment, tossed aside her wig and took a trip to the Jersey shore. We celebrated my future grandson. We celebrated planning trips to Europe. Heck we even celebrate being able to wash a car.

I can't tell you how much it means to have these women in my life. I know that over the past 4 years I have certainly leaned on them. Thanks ladies!

If there are other woman who think they need to Lean on another survivor check out this page for a list of Ovarian Cancer support groups in NJ and the Delaware Valley.

Dee

Every Day is a Blessing! I am blessed by the women in my support group.

Baby on the Way

It has been a fun past few days. My daughter,Theresa, came east for her baby shower on Saturday. We missed Andy but knew his battalion needed him keeping things running smoothly in Kansas while they are in Iraq. Baby G was showered with so many gifts- some homemade, some store-bought but all were given with love.

I am slowly growing into my future role as Grandma Dee. When I go to the store I gravitate toward the baby section looking at all the cute clothes. Then I move on to the toy section looking at stuffed animals and bath toys and little red wagons. I think that between Grandma Carol and I this little guy will be a very spoiled little tyke.

Dee

Every Day is a Blessing! I am blessed to be here looking forward to my first grandchild.

Supporting Wounded Warriors and Cancer Survivors

Eric Charsky is both a veteran and a cancer survivor. He recently founded the Volontie 1 Foundation. The mission of the foundation is to "help wounded veterans and cancer survivors rehabilitate mind,body & spirit." He helps these survivors by offering a weeklong clinic aboard a yacht. Survivors and wounded warriors get a chance to bond with each other, share resources and learn new skills as well as skills to rebuild their lives.

Please check out the Volontie 1 website . Be sure to watch the "Cancer Support on a Boat" video to learn more about the program.

Thank you Eric for providing this unique experience for our wounded war veterans and cancer survivors.

Dee

Every Day is a Blessing!

Genome Study and a Greater Understanding of Ovarian Cancer

I have wondered many times over the past 5+ years:

What makes my ovarian cancer tumor different than other women's tumors?

What about my tumor has allowed chemotherapy drugs to work effectively so that I would go in to remission, more than once? One possible answer might be the Selenium trial I was on.

Why do some women's tumors , even if they have the same subtype of OC, the same estrogen , progesterin analysis, still continue grow when exposed to the same chemotherapy?

Well, some of these questions have the potential for being answered. More than 500 ovarian serious adenocarcinoma tumors were examined as part of The Cancer Genome Atlas Research Network Study (TCGA). This was reported in the June 30th issue of Nature by the NCI.

What are some things they learn? Mutations in the gene TP53 which would normally prevent cancer from forming was found in 96% of the samples tested. The study found 68 genes that could be targeted for treatment by current FDA approved or experimental compounds. The study identified subtypes of the disease based on patterns in RNA transription from DNA. They also found that when the small molecule ( methyl compound) is added to the DNA the gene activity is affected.

I urge you to read this NCI press release and the summary in Nature for more information on what will definitely affect future areas of Ovarian Cancer Research.

Dee

Every Day is a Blessing!

Speaking for all Ovarian Cancer Survivors

I had the pleasure of meeting Susan Leighton when I attended the ASCO meeting in June. Susan was also one of the Focus on Research Scholars ©. With our common focus on ovarian cancer research and our we attended many of the same sessions and quickly became friends.

Susan was asked by the Ovarian Cancer National Alliance to represent all ovarian cancer survivors and provide testimony to the Senate Appropriation Subcommittee on Defense. She was urging the subcommittee to provide flat funding of $20 Million for ovarian cancer research. You can read her own words here. There was also a nice article on the website Alabama Live regarding her appearance on Capital Hill.

Way to go Susan!

Dee

Every Day is a Blessing!