Thursday, July 31, 2008

Defense Appropriations Bill - OC Research $

Chairman Murtha of the Defense Appropriations subcommittee announced on July 30th that the Defense Appropriations Bill has been marked up. The bill includes $25 million for Ovarian Cancer research. There bill still needs to go to the full committee and be approved. Then it goes to the full House to be approved and then approved by the Senate. But it is a start. Thanks to the NOCC for keeping on top of this bill and to everyone who asked their elected officials to support increased funding. The bill also included $150 million for peer-reviewed research for breast cancer, $80 million for prostate cancer research and $25 million for lung cancer research.


Tuesday, July 29, 2008

Three Years!

Three years ago today was the day I was diagnosed with Stage III Ovarian Cancer. July 29,2005

Today I went to see Dr Gibbon, my gynecological oncologist and the surgeon who operated on me. We caught up on family news and I shared photos of my daughter's wedding. We talked about how I was feeling and my stable CA-125 result. Then it was time for my least favorite part of my visit but incredibly important internal exam. After the examination she smiled and said everything was good and to see her in 3 months!

Another 3 months to LiveStrong. Great news for me and my family.


LiveStrong Summit 2008- OSU Stadium and Heading home

We took lots of photos at the end of the Summit by the stage and out in the lobby. Since our plane did not leave until 5:20pm a few of us decided to leave our bags put and walked over to the stadium for the second time. This time we were able to view the field. The stadium looked even bigger from the inside. We returned to pickup our bags , got on the bus and headed out to the airport.

On our arrival we learned that most flights were canceled. They were having some strong lightning strikes and high winds in the Newark area. Our Continental flight was not even listed on the sign at that point. So we had a bite to eat and headed to the gate. Sure enough we get there and are told the flight is delayed. Our plane was in Boston and scheduled to go to Newark before it got to Columbus. The delay actually brought together some other NJ LiveStrong delegates that we had not met before. At 6:30 they announced that they were putting a plane that was in Newark into service for our leg of the trip. We headed on the plane around 10 and got to Newark around 11:30. The ride was a bit bumpy but we had one of the best landings I've ever had. It was good to be home and share with my husband the great things we did at the Summit.


LiveStrong Summit- Day 4- Closing Ceremony

Sunday was another sunny day. We checked out of our hotel, dropped our bags off at Weigel Hall and went to breakfast under the tent outside of Mershon. The final session began with the Track recognition awards. The winning commercial from each track was played and they were awesome. I am biased but I think our pink track was the loudest!

The closing session was a panel discussion with Dr Bernadine Healy, Dr Sanjay Gupta and Dr. Gordon Gee. Sadly, Dr Gee lost his son-in-law in an accident in PA during the Summit. He shared with us a moving description of how his son-in-law died in a "magnificent way". ( My condolences to the Gee family.)

As the event ended and the lights came on after survivors spoke on stage I felt sad. Sad to leave my friends from the 2006 summit. Sad thinking about Holly ( Cape Cod) who was at my table in 2006 and was no longer with us. Sad that Dr Pausch had died. Sad to have to say goodbye to my new friends.

Working to make Cancer a National Priority!

Monday, July 28, 2008

More to come

I will finish reporting on Day 4 tomorrow. After my doctor's appt.
Tired but LivingStrong

LiveStrong Summit- Day 3 Stephanie Spelman and the Zoo

Our Saturday morning started with a keynote speech by Stephanie Spielman , wife of Chris Spielman NFL linebacker. She spoke of her battle with breast cancer and how she started her foundation and raised $1 million in 6 months.

During the morning session our advocacy tract learned how to approach leaders, recruit others to our cause and how to use persuasion tactics. We were asked to write a an "elevator "speech to persuade an elected official to make cancer a national priority. Jorges gave an incredible speech linking cancer as a priority to the Declaration of Independence. We were also asked to write a letter to our senators to support the Access to Clinical Trial Act.

For the afternoon we learned about vote counts and how to identify talking points when speaking to elected officials. Then it was simulation time. Each person in our group was asked to speak to a senator about supporting a bill to increase funding for cancer. I had to speak to Senator"St. John". We did not know how our senator would respond and we only had 3 minutes to make our point. I happened to get the toughest senator - she basically told me "No" . So politely I left her my hand made business card and thanked her for seeing me.

As other groups were finishing up Kevin and I walked a few blocks and visited the Ohio football stadium. Now that is one large place. I thought the Lane stadium was large but this one is even larger.

We returned to our track's meeting in time for the awards ceremony. My pink moose group won the Unity award. As we headed toward the buses we met Linda Armstrong, Lance's mother. She is a very nice woman who posed for photos and chatted with us.

After a 30 minute bus ride we arrived at the Columbus Zoo directed by Jack Hanna. We had dinner and then were given tickets to the zoo which was open until 9 that night. I saw the tiger, red pandas, penguins, manatee , elephants , rhino but was sad that the koala was all curled up in the tree asleep for the night.


LiveStrong Summit- Day 2, Pink Moose

After having a light breakfast we headed into the Mershon Auditorium for the opening session. We heard Dr. Richard Carmona, the 17th Surgeon General of the US. He spoke about the new National Call to Action on Cancer. The document gives steps you can take to take to reduce your risk for cancer.

After Dr Carmona's speech, the breakout sessions started. We took a walk through the OSU oval and ended up at Postel Hall where our PINK track on advocacy was meeting. Mandy Ellerton from Grassroots Solutions was our track leader. After a talk about "power" we broke down into smaller groups. I was part of the pink moose- Go Moose!( bring both hands to you head and spread your fingers like a moose's antlers)

In the morning , we learned how to plan a media event and we listened to the LiveStrong Army Upstate(SC) leader talk of events that she held.

After lunch we were charged with making a 60 sec commercial about why cancer should be a national priority. Each group was given small video cameras and we started outside to begin talking about what should be in our commercial. We were all really focused and started shooting - even enlisting one of the food cart people to help us out. When we brought the camera inside we learned that the commercial had to be filmed all at once. Back outside we went to try to reproduce the commercial- amazingly we were able to complete it in record time. We all watched each group's commercial. It was incredible that each small group of strangers could produce such outstanding work in 40 minutes.

The regular day ended back at Mershon.In the middle of the lobby area, we got a chance to meet Dr. Sanjay Gupta from CNN. He was nice enough to allow his photo to be taken with Kevin and to talk to Alycia on the phone. (Thanks Dr Gupta for being so approachable.) That afternoon we heard Doctor Freeman, Ralph Lauren Cancer Center, was the doctor who started the patient navigator system. He gave an inspiring talk.The photo is of Lance and Dr Freeman

As the LiveStrong Army - Central Jersey leader, I attended a dinner sponsored by the LAF for all Army Leaders throughout the world. It was a fun gathering at the Buckeye Hall of Fame restaurant. I got a chance to meet leaders from Nevada, Oklahoma, Georgia, South Carolina , Hawaii, Rhode Island and Germany. I also caught up with Courtney another OC survivor who I met in Austin in 2006.

LiveStrong Summit- Day 1, Part III Town Hall

Back at the hotel I changed into my "Vote Yellow" t-shirt and met Kevin for the short walk overto the statehouse for the opening reception. We met Bob K and his mom and Matt Z and a few other's whose names I don't remember.

Around 5:15 we got on the bus that took us to Mershon Hall for the Town Hall meeting.

We were told not to bring cameras or cell phones to the event. Security was high for the presidential candidate. We handed all items in our pockets and our pocketbooks to the police to be inspected then walked through a security machine just like at the airport.

We were there pretty early and we got excellent seats in the 6th row on the left. Paula Zahn moderated the event and both she and Lance Armstrong asked questions of the candidate.( Sen Obama was in Europe and unable to attend.) Not only were Summit delegates in the audience but also Ohio government officials, OSU administration and local cancer researchers( like Dr. Kupps who I visited earlier in the day). On the stage with the candidate were some of our more active LAF volunteers with questions of there own to ask( Check out for more info and photos of the event.) Ron from New Hampshire was actually able to ask his question.

In a nutshell Senator McCain said he would reverse the trend of cutting (or keeping level) support of NCI, NIH and the CDC. Too bad there wasn't more time for the delegates to ask their questions.

We went back to our hotel and had a bite to eat in Darbys and got ready for a busy first day of the conference.


LiveStrong Summit- Day 1, Part II Visiting an Ovarian Cancer Research Lab at OSU

With a few hours until the Town Hall, I called Dr. Selva Karuppaiyah a researcher supported this year by a Kaleidoscope of Hope Grant. He graciously invited me to visit his lab.

His mentor and Ovarian Cancer researcher, Dr. Kuppusamy picked me up at the hotel and brought me to his lab in the Tzagournis Medical Research Facility on the OSU campus. I had a wonderful and informative visit. Selva told me about the good results he was having with his research on drugs that will prevent the STAT3 protein from signaling the cancer cell to reproduce. I met the undergraduate who was helping him this summer and learned about how drugs tested in Selva's lab are being tested on mice. I learned about research on using oxygen to make cancer cells more receptive to anticancer drugs. The engineer who works with the research group was eager to show me the hyperbaric oxygen chamber that holds the mice for that segment of the testing protocol. I also saw a machine in use that allows scientists to accurately measure cancer cell growth in live animals.

I felt very proud to know that KOH funding is helping support this cutting edge research!Thank you Dr. Selva , Dr Kupps and all your researchers and support staff.


LiveStrong Summit- Day 1, Part I Arriving in Columbus

Kevin and I flew out to Columbus and checked into the Hyatt Capital Square. The hotel was right across the street from the Ohio Statehouse. Since we were able to check in to our room early and it was too early to register we had time to just walk around the city. We literally walked completely around the Statehouse. What an interesting building. This photo is the dome at the Statehouse

On this walk we saw the John McCain bus outside the Renaissance Hotel. We took some photos by the bus and one of the secret servicemen that the Senator would be leaving soon if we wanted to see him. I thought if I got a chance to shake hands I could tell him I was an OC survivor and that I wanted him to support increased funds for cancer research. As it got closer to when the Senator was to leave the hotel Columbus police pushed us back to the end of the block. As we waited there, we met Michele from Massachusetts who was also a delegate. Senator McCain left the building and went directly to his bus. I've got a few photos of him in the distance. Never did get to ask for his support.

Then it was off to register inside the Statehouse. We picked up our goody bag and our t-shirts for the Town Hall meeting as well as our name tag and info about Columbus. I was able to introduce Kevin to Brian, Dave, and Ron. We met up again with Michele and decided to have a bite to eat at a local pizza restaurant.


Wednesday, July 23, 2008

LiveStrong Summit 2008

Well the time has finally come to attend the Summit. I am off tomorrow to Columbus with my nephew , Kevin. I can't wait to catch up with old friends ( Brian, Courtney, Scott, Crissy, Crystal, Dawn) and make new ones and of course learn more about Advocacy.

I appreciate the hard work everyone at LAF and their volunteers have done to make this happen. I also appreciate my husband for his understanding and support for all my cancer advocacy work.

I will have limited access to a computer while I am there but I promise to tell you all about it on my return.



Tuesday, July 22, 2008

Practicing for the LiveStrong Challenge

It has finally gotten a bit cooler with a nice breeze here in NJ. So when my friend asked me to meet her for lunch in New Brunswick today I jumped at the opportunity. Nick dropped me off in New Brunswick. We had a fun lunch at Old Man Rafferty's and were able to share all the great things the two of us have been up to since we last got together in May. I wore my comfy shoes so after lunch I walked home. This was not the first time I walked home - I had done it a few times last fall from CINJ.

I walked up Albany Street , across the Albany Street Bridge and saw two men on the Raritan River on Jet Skis . Can't say the last time I saw Jet Skis on the old Raritan- Rutger's crew shells -yes but not Jet Skis. I window shopped in Highland Park and then headed down North 8th toward home.

When I got home I checked the distance on Google Maps and saw that I walked 2.5 miles back from the restaurant. All that in under an hour at what I considered a leisurely pace. So I should be ready for the 5K walk in Philly on August 24th.

I'm looking forward to it!

Monday, July 21, 2008

Newton Motorsports Pro Tennis Classic - New KOH Benefit

Great news for KOH!
Press release:

SPARTA, NJ, June 16, 2008 – The eyes of the tennis world shift to the beautiful lakefront town of Sparta, NJ on Sunday, August 10th. The inaugural Newton Motorsports Pro Tennis Classic represents an unprecedented opportunity for area residents to see high level, world-class tennis played right in their backyard at the Lake Mohawk Tennis Club. The interactive and exciting format of the event, which begins at 1:00 PM, features pro sets of singles and doubles accompanied by music.

Jan-Michael Gambill is a three-time ATP tournament winner and former world ranked #14 player who was voted one of People Magazine’s “50 Most Beautiful People in the World” in 2000. He holds career wins over tennis icons Andre Agassi, Pete Sampras, current world #1 Roger Federer as well as former world #1 Lleyton Hewitt, whom Gambill defeated to win his first career ATP title in 1999. Gambill will arrive in Sparta in top form, having spent the month of July playing for World TeamTennis’ Boston Lobsters, who made Gambill their first round draft earlier this year.

One of Morristown’s own, Justin Gimelstob returns to New Jersey holding career wins over legends such as Agassi, Patrick Rafter, Mark Philippousis, and three-time French Open Champion Gustavo Kuerten. Gimelstob has also teamed up with Venus Williams to win Grand Slam Mixed Doubles titles at the Australian Open and French Open. Currently a leading television commentator and blogger for Sports Illustrated, Gimelstob represented his country as a member of the U.S. Davis Cup team in 1998 and 2001. Earlier this year, he was drafted by the Washington Kastles of the World TeamTennis Pro League.

Both Gambill and Gimelstob are excited to bring professional-level tennis to Sparta. “I’m looking forward to returning home to be a part of the very first Newton Motorsports Tennis Classic,” Gimelstob says. Gambill promises, “We’re going to put on a show for the tennis fans of New Jersey and, coming from the Pacific Northwest, I’m looking forward to a fun weekend in the lake town of Sparta, which I hear is beautiful.”

Mark Macler, event organizer for Skyland Events and a Sparta resident, noted that hosting this event is a true honor for the community, giving area residents an opportunity to experience professional-level tennis while supporting the two outstanding charities that will be the beneficiaries of proceeds from the Newton Motorsports Pro Tennis Classic.
“After a careful review of some very deserving groups, we have selected The Kaleidoscope of Hope Foundation for ovarian cancer research and the Newton Memorial Hospital Foundation as the recipients of event proceeds.” Macler further noted, “To have players of Jan-Michael and Justin’s stature willing to assist with such a phenomenal cause is a blessing for our event. We hope people from across New Jersey will come out to support these wonderful groups and to see world-class tennis in our own backyard leading us up to the U.S. Open.”

Sunday’s tennis action will cap off a full weekend of activities along the Sparta boardwalk. It all begins with event sponsor Sparta Athletic Club’s junior tennis clinic on Saturday, August 9 from Noon to 2:00 PM. This free clinic is open to any child between 10-18 years of age interested in learning about the sport of tennis and will feature many of the event’s stars assisting club pros. Interested parents should contact Sparta Athletic Club at 973-729-9141 to complete required paperwork and confirm a position.

A ticket package may also be purchased for the Pro-Am, which offers a limited number of lucky patrons the once-in-a-lifetime chance to play with and learn from touring professional tennis players, along with photo and autograph opportunities. This package offers one playing spot in the Pro-Am, as well as admission to the event.
Sponsorship opportunities and Pro-Am slots remain available on a limited basis. Interested parties may contact Mark Macler, Event Director, at 973-729-5010 or 610-996-0280 (mobile).
Tickets for the event, Pro Am and VIP/Sponsor party are available by phone at 973-729-5010, mail or online at

I am looking forward to a fun day!

Getting that Blood pressure in Check

Last Thursday I woke up feeling terrible, nauseous,dizzy, headache, tired - just plain icky. I took my temperature- normal then my blood pressure. Now that one was very high- both systolic and diastolic. Of course the first people I call are the nurses at CINJ, who directed me to call my PCP since he prescribed my blood pressure meds and if he can't see me to call back.

My PCP said to come right in. His nurse and he both confirmed the high pressure and he asked what I was doing different. I thought about this and realized that I was taking a new batch of blood pressure meds- actually a new and different generic brand of my blood pressure meds. My PCP called the mail order company ( which shall remain nameless) which filled the order and spoke to a customer service person- no pharmacist was available - about my prescription. The customer service person insisted that it was filled correctly and when my PCP asked to have them ship me the other generic that I had been taking for 6 months they said "No , We don't carry it any more." And that was that. Thinking that my body was not using the generic drug as it had the previous generic my doctor gave me another prescription for the brand name drug and told me to see him the next week.

Off I went to my local Pathmark pharmacy and the very understanding pharmacist there called the insurance company and got approval to fill another prescription. I came home with the brand name drug and started taking it.

Guess what happened - my pressure came down and I started feeling better. I went to see my PCP this morning and my pressure was back to where it should me . Hurrah!

All I kept thinking through all this was that I have the Lance Armstrong Summit to go to and I don't want anything to get in the way of my trip to Ohio.

Soon to be LivingStrong in Ohio....


Thursday, July 17, 2008

QVC Raising funds for OCRF

QVC will be hosting Super Saturday live from the Hamptons ( NY) on Saturday July 26,2008. Kelly Ripa and Molly Sims will host the event from 2-4 pm which will benefit the Ovarian Cancer Research Fund.

I will be in Ohio at the LiveStrong Summit on the 26th so I hope my friends and internet buddies will make a purchase for a good cause!


Wednesday, July 16, 2008

One Week till the LiveSTRONG Summit

So how do you like that logo???It is my new Central Jersey LiveStrong Army logo. Thanks to Aschley from LAF for sending it my way.

I am really getting psyched about attending this year's LiveSTRONG Summit in Ohio. I can't wait to meet up with some old friends from the Austin Summit and of course meet some new survivors and caregivers too. I will miss Kendal and Dianne, two other OC survivors from the first Summit ,who can't attend this one due to work and family commitments.

Since I am a LiveSTRONG Army Leader - I will be volunteering to staff one of the info tables. We also get to meet each other - face to facae- at a dinner Friday night. But I also need to catch up with Courtney and Chrissy and Kevin that night too. Busy times.

A big Hello to Ken Youner- Northern NJ Army Leader and fellow LiveStrong Day 2007 delegate.

Tuesday, July 15, 2008

SGO OvaSure (TM) Statement

The Society of Gynecological Oncologists issued a statement on July 2 regarding the test OvaSure(TM) .

After reviewing OvaSure’s materials, it is our opinion that additional research is needed
to validate the test’s effectiveness before offering it to women outside of the context of a
research study conducted with appropriate informed consent under the auspices of an
institutional review board."

For the complete statement click here.


Saturday, July 12, 2008

Tony Snow 1955-2008

Just the other day I was wondering how Tony Snow was doing. I liked the fact that he wore his LiveSTRONG bracelet all the time even with his business suits. He also wrote some powerful words about having Cancer which I read and printed out. I was hoping things were going well for him.

This morning I woke up to the news that Tony Snow had died.
That stinks.

My thoughts and prayers go out to his family and friends.


Friday, July 11, 2008

Star Ledger article- OC Awareness

Just wanted to share a news article in my local paper about a Newark woman, Stephanie Wilkins, who passed away from ovarian cancer earlier this year. Her friends and family are hosting an OC Awareness Day at local food stores on July 12. Please read the article here.

They also are planning a walk in September in Branch Brook park called Walk and Remember. It will raise funds for the Lynne Cohen Foundation for OC.

A Wonderful Trip

I just returned from a fun cruise to Bermuda. We sailed out of Norfolk on a Royal Caribbean cruise ship with two other couples. We had lots of fun even though after 5 days we still couldn't remember how to get to our stateroom when we got off the elevator. We docked at Kings Wharf and made use of the ferry and buses to tour the island.

Bermuda was just beautiful. The people were friendly, the beaches were clean , the houses so colorful and the water the most wonderful shades of blue.

This photo is of Horseshoe Bay.

Monday, July 7, 2008

Welcome McCoy !

My niece and nephew have a new addition to their household.

A Viszla puppy named McCoy. McCoy is named after " Law and Order's" Jack McCoy . This dog is so - so cute. We stopped by to see him and had so much fun playing with him.

You can even follow his antics on his blog.



Thursday, July 3, 2008

Another CA-125 result

I made the call this morning to the Nurse Help Line at CINJ to find out my CA-125 result


Another keeper. I always get a little nervous( ok maybe more than a little) before the test and I stay that way until I get the results. My Gyn- oncologist appointment is later this month so I have the blood drawn when I get my port flushed. Yes, I still have my port. Doesn't bother me so I figure it can stay until it does bother me.

Hope Everyone has a Happy 4th of July!!!