Women's Health Summit- April 14,2008

HealthCare Institute of New Jersey’s Ovarian Cancer Health Summit:
Featuring Congressman Rodney Frelinghuysen (NJ-11)
April 14, 2007
8:30 AM- 12 Noon
Morris Museum
6 Normandy Heights Road , Morristown, NJ

The main program, "Facts about Ovarian Cancer" will cover new screening tests, latest treatment information and research breakthroughs for Ovarian Cancer. A key note address will be given by a researcher from the National Cancer Institute-NIH.

The morning will include a health fair with exhibits by a number of organizations- Kaleidoscope of Hope Foundation, Northern NJ-NOCC, as well as pharmaceutical and medical device companies, and hospitals. There will also be a number of free health screenings. Breakfast will be provided.
RSVP by April 7 908-212-0333

The Health Care Institute of New Jersey is a trade association for research based pharmaceutical and medical technology industry in NJ.
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I've registered for the event and look forward to an informative morning.

LiveStrong
Dee

Blood Test Day - Redesigned CINJ site

This morning I went to CINJ for my port flush and bloodwork. It was good to see Fanina and Joyce , two of my Oncology nurses.Along with CA-125, they also tested for BUN & creatinine. The results are needed before I could schedule my 6- month CT scan. By noon CINJ had called back to let me know that I am scheduled for my CT scan on April 9th. Now I just have to stay calm until then.

The CINJ website has been redesigned and Joyce's photo is on the top of one page. The entire Gynecological- Oncology Department, Physicians and nurses( my life savers) are at the top of the clinical trial page. Do check it out here. I am really pleased with how the page looks and thank whoever was involved in the design for making it easier use.

I am also happy that my friend Brian , NJ resident, testicular cancer survivor, LAF supporter and fellow Summit delegate was deemed "Cancer free" yesterday. I am so happy for him and his family.

LiveStrong
Dee

Ovarian Cancer Fundraisers

There are some important functions and fund-raisers for ovarian cancer taking place in NJ during the next few months. Check them out!

"Teal Night For Life"
April 5,2008 8pm to closing
The Olive Branch Restaurant ,
37 Bartlett Street , New Brunswick, NJ
Teal night for Life will be raising funds for Team JLO. Team JLO is a 5K race team created to race funds and spread awareness for the Sandy Rollman Ovarian Cancer Foundation 5K on April 26, 2008.The team is racing in honor of Janice Lopez, aka JLO. Janice and her family worked with me to Turn the Town Teal ( a program sponsored by the Kaleidoscope of Hope Foundation) last September. We had fun hanging ribbons on trees along Amboy Avenue and Municipal Blvd in Edison and Main Street in Woodbridge. Come for the drink specials, great food , live music and great prizes. For more information contact Chuck Lopez at 732-738-7482.


Also on April 5th:

Spring Gala 2008 ( and Silent Auction)
Kaleidoscope of Hope Foundation
Westin Governor Morris Hotel
Morristown, New Jersey starting at 7 p.m
This year’s event–a catered cocktail reception with open bar and carving stations, plus our annual silent auction also includes music by the Intentions. Spring Gala 2008 marks the day we announce the names of those individuals and organizations involved in ovarian cancer research who’ll receive financial awards based on our 2007 fundraising efforts. This year we will honor Novartis for its generosity and advocacy.Tickets to Spring Gala 2008 are $150 per person for open seating. For reservations or more information call Kaleidoscope of Hope at (973) 644-0500 or contact gala chairperson John Stewart at stewartjf@verizon.net.



Coastal Jersey Parrot Head Club
Raising Funds for Ovarian Cancer & Birthday Bash
June 1, 2008 1-6 PM
Saw Mill Cafe Green Room
1807 Boardwalk , Seaside Park , NJ

All proceeds will benefit research at the Cancer Institute of NJ. My friend, Pam, is an Ovarian Cancer survivor and is secretary of this organization. So join these Jimmy Buffett fans for some fun for a good cause. You may purchase tickets online at their site or contact Susan Howe at SUSANMHOWE@yahoo.com.

LiveStrong
Dee

South Carolina Trip

I made a trip to Columbia, SC with Theresa after her shower. I enjoyed the warm weather but not the tornado's that went through the area last Saturday.

I was able to spend some time visiting places I had not been before. I spent one afternoon while Terry was teaching at the McKissick Museum on the University of South Carolina Campus. They had three exhibits- one was about South Carolina in World War I. They showed a number of posters that advertised war bonds. The second exhibit had photographs by Michael Eastman of the Aiken-Rhett house in Charleston. That gave me even more reason to make a trip to Charleston. The third exhibit was Natural Curiosity- The University of South Carolina and the Evolution of Scientific Inquiry into the Natural World. It just happened that a professor at USC in this area had originally taught at Dickinson College.

On Tuesday, I visited two of the Historic Homes of Columbia. I walked the 6 blocks from Terry's apartment to the Historic Columbia Foundation museum store and was able to get tours of the Hampton-Preston Mansion and the Robert Mills House. I learned what Columbia was like during the time of the Civil War as well as the architecture of the time. I wasn't aware that the kitchen in those times was outside the main house. Think of it as when we go outside to grill. They were afraid of fires caused by cooking in the house. I wasn't sure why that was a concern since each home had at least 4 fireplaces. The Robert Mills house was designed by Mills who also designed the Washington Monument. His designs all stressed symmetry so to balance the doors in a hallway he might put in a fake door just to have one on both sides. Jewel the docent who gave me the tours was fabulous to listen too. She dresses in period costume for some events they have at the homes.
The photo above is me in front of the Hampton-Preston Mansion.

My flight home on USAirways included a 3 hour delay due to weather and a bumpy ride for most of the flight. Now if only they kept the luggage inside during the delay so that I would not have to dry my good clothes after I took them out of the bag. But I made it safely and that is what counts.

LiveStrong
Dee

Still Time to Apply to the LiveStrong Summit

There is still time to apply to the LiveStrong Summit. Click here for a link to the application.

You can sign up for the workshops on Grassroots and Advocacy, Grassroots and Elections and Grassroots and Fundraising. And yes, you can make a difference in our country's fight against Cancer!

Knowledge is Power.
Unity is Strength.
Attitude is Everything.

LiveStrong
Dee

Lance Mackey and Arlen Specter

Lance Mackey won this year's Iditarod. He is a 37 year old thoat cancer survivor. Sports Illustrated has an article about the race.

This morning I was watching the Today Show and saw Matt Lauer interview Pennsylvania Senator(R) Arlen Specter about his new book Never Give In: Battling Cancer in the Senate. He was diagnosed with Hodgkin's disease and continued working in the Senate during his treatment in 2005. One thing that Senator Specter spoke about was the reaction people had to seeing him bald. He said people had "That look" in their eyes which made him feel like they were wondering when he was going to die. I can remember many looks like that. Always being the advocate I thought to myself - I wonder what his voting record on cancer research funding has been ? I might have to check that.

LiveStrong
Dee

I've Been Accepted!

I am thrilled to have received an e-mail letting me know that I have been accepted to attend the LiveStrong Summit 2008 in Columbus, Ohio in July . I had such an awesome time at the Summit in 2006 in Austin that I can't wait to register and meet some old friends and make some new friends. I will wear teal in the hopes of meeting other Ovarian Cancer survivors. I am looking forward to attending the Advocacy workshops.

Unity is strength- Knowledge is Power and Attitude is Everything-

LiveStrong!
Dee

Bill of Rights for Adolescent and Young Adult Cancer survivors

SeventyK is a relatively new Adolescent and Young Adult
Cancer Advocacy campaign created by Dr. Leonard Sender,
oncologistfrom Children's Hospital of Orange County .
On his website he has this Bill of Rights :

We are neither pediatrics nor geriatrics,
we have unique needs- medically, socially, and economically.
However, the rights and dignity of adolescent and young adults are
equal and vital to all individuals.
We deserve to have our beliefs, privacy,
and personal values respected.
Access to care is a right not a privilege.....

Click here for the complete Bill and more info.

As a younger older adult ;o) I feel that the young
survivors do have special needs the cancer community
have to consider.
I support their Bill of Rights.

Website - www.seventyK.org

LiveStrong
Dee

I Made the Call

This afternoon I called the offices of Representative Frank Pallone. Congressman Pallone is chair of the Subcommittee on Health which is part of the House Committee on Energy and Commerce. I left a message for his Health Liaison - Alana. ( It seems that Nancy who was there last spring is no longer there.) I told her I was a resident in NJ and OC survivor. I asked her to urge Congressman Pallone to sign the Dear Colleague letter to Support Johanna's Law requesting $10 Million and also to sign the Department of Defense Dear Colleague letter to support OC research at the level of $25 million for fiscal year 2009.

I hope that all the calls we make today will make a difference!

LiveStrong!
Dee

Call in Day March 12th- Johanna's Law Funding

The Ovarian Cancer National Alliance and NOCC are asking for your help on March 12,2008. Call your Representative to support appropriations for ovarian cancer programs in the House of Representatives. This is the last year for authorized funding of Johanna's Law. We are asking our Representatives to sign-on to the "Levin/Burton letter" in support of $10 million for Johanna's Law.

Go to this page for more information .

Or call 202-225-3121 and ask the operator to transfer you to your Representative's office. Once you are in contact with the office ask for the Health Legislative Assistant. Explain that you are the Congressman's constituent and a survivor/ caregiver/ advocate and ask him/her to have your Member sign the Levin/Burton letter in support of $10 million for Johanna's Law.

LiveStrong !
Dee

Fun Shower Weekend

After stopping to see Matt in Virginia on Thursday night, Theresa got home early Friday afternoon. She arrived in time to go with us to pick up Andy from Newark airport. It was great having Terry and Andy home for the weekend.

I woke up on Sunday feeling very happy that we were not living in Columbus, Ohio ( with their 20 inches of snow.) All along I had this fear that we would have to cancel Theresa's shower because of a blizzard. Andy's parents , grandmother and aunt drove in from Pennsylvania. Then off we went to the shower which we held at Main St Trattoria in Metuchen. Theresa's maid of honor did a great job decorating the room and wishing well and getting the games and prizes organized. Her bridesmaids and cousins helped keep everything organized and everyone loved the food. All the guests brought such great gifts which Terry had a fun time opening. It was a fun time - I only wish I had more time to get to talk to all the family and friends who came! The wedding will be here before you know it!

Dee
LiveStrong

DeLauro - King Dear Colleague Letter

Believe it or not the Department of Defense (DoD) has Medical Research Programs.

Now is the time for the House Appropriations Subcommittee to support an increase in funding for the Ovarian and Prostate Cancer Research Programs (CDMRP) for the fiscal year 2009. Two members of the House - De Lauro and King have asked their colleagues to sign a letter to support an increase in funding for the programs.

As you may know there is no early detection test for ovarian cancer, so most women are diagnosed in late stage when survival rates are decreased. One in 69 women will develop Ovarian Cancer.

More than 218,000 prostate cancer cases are diagnosed each year and more than 27,000 will losetheir life to the disease.

The letter requests the subcommittee allocate $25 million for (OCRP) the Ovarian Cancer Research program and $100 million for the Prostate program.

Please write or call your representative . You can send him/her an e-mail through this Ovarian Cancer National Alliance site.

Thirteen years

I woke up last night about 2 am and the first person that popped into my mind was my sister, Roberta. Then it dawned on me that Bert, a 5 year breast cancer survivor, passed away 13 years ago. She was diagnosed and had a mastectomy at 42 years of age. She took the usual cocktail of drugs at the time . I can remember her talking about 5-FU which she would call the "5-F_ _k you" drug because it made her so sick. She also experienced all those wonderful side effects like hair loss and weight loss and her one arm was swollen. I do recall she had some very nice wigs that really made her look like herself although I bet she never thought so. (I never thought my wig made me look anything like the real me. ) She liked her doctor at Morristown . But when she recurred, she had a bone marrow transplant at Hackensack one of the few hospitals at the time in the state that were doing the transplants( If I remember correctly.) She spent weeks in isolation so that she could spend some quality time with her two children, Alycia and Robert. She was tired but I never remember her really complaining when I would visit but then that was probably to protect me her "little" sister! She still went about her daily chores as best she could taking care of the house and making meals for her husband, Mike and the kids as her mother-in -law and Aunt helped her.

Thirteen years ago people were still guarded about mentioning they had cancer.She wore a wig all the time. I visited usually with my own two small children in tow so I never really got a chance to talk seriously about her cancer. I tried to keep things upbeat and fun thinking that she wanted time away from the disease. I hope I was right about that. Two years ago when I was going through my treatment I would think how great it would have been to call Bert and ask her how she got through it all. I still miss being able to say "Love Ya" to her on the phone.

Her children are adults now- Alycia a pediatric resident working at the same hospital she received her transplant in and Robert who is working and living in Manhattan. They are responsible , compassionate and fun loving adults, who my sister would be proud of. I certainly am!

Dee
LiveStrong

Campaign responses to Cancer Policy Questions.

Please view the Cancer and Politics posted by Brendan Burns in the LiveStrong Blog.

Here is part of a response from Senator Obama.
"Senator Obama takes fighting cancer quite personally - he lost his mother to cancer, and often discusses the emotional toil of watching her worry about fighting with insurance companies in the final days of her lives. In the Illinois State Senate, he championed legislation expanding insurance company coverage of mammograms - a key law in the fight against breast cancer. In the US Senate, Obama was a lead sponsor of Johanna’s Law. Signed into law in January 2007, the law will educate women and increase awareness of ovarian cancer."

Senator McCain said "Yes " to increased funding for research and mentioned the role of advocates in getting the funding increased.

Senator Clinton had already responded during the Iowa Presidential Forum .Her responses in pdf format can be found here.

Dee
LiveStrong

Two Years

A lot can happen in two years.

I am happy to say that it is two years since my last chemotherapy treatment. I had 9 cycles in a Clinical trial that used Selenium along with carboplatin and taxol. There was one spot on my liver that was still of concern . But after a PET scan showed it did not exhibit any activity I was told I did not need anymore chemo. It hasn't always been easy , this journey back to my new normal but it has been interesting!

I went to DisneyWorld with my husband a month after chemo finished.
I attended my niece's wedding without a wig or scarf two months after chemo finished.
I attended the Lance Armstrong Foundation Survivors Summit in Austin , Tx 7 months later.
I attended the Houston Bowl in December 2006 and cheered Rutgers on to victory.
I visited my son in Switzerland as he spent part of his junior year abroad, April 2007.
I grieved with the other Hokie Parents on April 16th.
I attended the Lance Armstrong Foundation LiveStrong Day in DC in May 2007.
I celebrated my daughter's engagement to a fabulous young man in June 2007.
I visited Ocean Isle Beach, NC with friends in August.
I joined my niece's husband and her friend and we walked for Team - 3 Beat CA in Philly 8/2007.
I attended another Rutgers Bowl game, this time in Toronto Canada. I saw Ray Run!
I gave a workshop on Advocacy at the Wellness Community of Central NJ in January 2008.
I was asked to be on the Board of Directors of the Kaleidoscope of Hope Foundation, Jan 2008.
I worried as my mother-in-law had pacemaker surgery.
I met some totally awesome survivors in my CINJ and Wellness Community Support Groups and on the ACOR list.
And as Lee Womack's song gives a choice - well , I've danced for 2 years. And with NED (no evidence of disease) no less.

I can't wait to dance for the next 2 or 5 or 10 years!

Hope you all LiveStrong!
Dee

Welcome Home Erin!

I heard last night that Erin a fellow "3 Beat CA" Philly Challenge team member is finally home from the hospital. Erin is a long time friend of my niece and her husband. She was diagnosed in 2005 with bile duct cancer. She had surgery and chemo around the same time I was in treatment. In 2007 she was placed on the liver transplant list. In December she received news that a liver was available so she traveled into NYC for the surgery. Now after 60+ days in the hospital she was able to come home. Welcome Home!

Erin is such a strong and dynamic young lady. I hope her recovery at home goes well.Please keep her in your prayers.
Here is a photo of myself, Erin and Kevin the "3 Beat CA's" at the 2007 Challenge.

Dee
LiveStrong!

Thanks Senator Menendez

I am really happy to report that on February 25,2008 Senator Menendez ( NJ) signed on as a cosponsor of S.2569
Title: A bill to amend the Public Health Service Act to authorize the Director of the National Cancer Institute to make grants for the discovery and validation of biomarkers for use in risk stratification for, and the early detection and screening of, ovarian cancer.

On behalf of all the Ovarian Cancer survivors in NJ - Thank you Senator!

Dee
LiveStrong
PS: Thanks also to the Senator's aide Regis Barbou.