Tuesday, January 29, 2008

Tough Entry

Well I have kept my last few entries to OC facts and info. But I think I can finally write about what the past few days has been like.
Yesterday I attended the wake of Emma, the 5 year old daughter of a young lady I taught about 10 years ago. Her mother,Elizabeth, is the same age as my daughter and her sister Anna is the same age as my son. Elizabeth,Terry,Matt and Anna were all good friends in elementary school. Elizabeth recalled the fun times they used to have on half-days when I would have teacher meetings and her Mom would watch the kids at her house. Elizabeth was incredibly strong yesterday and over the past few years. Emma was a happy, pretty little girl who brought joy to everyone. It saddens me that during her short 5 years she spent so much time in various cancer treatments. Emma was / is an Angel!

At the end of last week I learned that Cindy O , who is a member of the ACOR Ovarian listserv, was entering hospice. She is known for her Teal Shoes and great sense of humor. She answered lots of my questions when I was first diagnosed and has helped so many other women. Cindy's son attends Virginia Tech so we e-mailed back and forth a few times last April.

I have to get used to having some OC survivors in my life for only a short time but I am stilled blessed by each and every one of them.

Then I got an e-mail from one of the men I became friends with at the LiveStrong Summit. Brian has really done an incredible amount of fund raising for the LAF in NJ. Well, he found a lump and is scheduled to see a doctor at CINJ tomorrow. I pray that that lump will be benign.

So it has not been a really fun couple of days. Thanks goodness things on the home front and wedding front are going smoothly.

Sunday, January 27, 2008

OC in The News

Oral Contraceptives Give Substantial Long-Term Protection Against Ovarian Cancer

Use of oral contraceptives during a women's life-time gives substantial long-term protection against ovarian Cancer - and the longer they are used , the greater the reduction in risk. Read the summary here:


Tuesday, January 22, 2008

Breathing a Sigh of Relief

Today was my 3 month visit with my gyn-onc at CINJ. My CA-125 bounced up in December and down in January. It didn't go back down totally to my November reading but down just the same. So this exam / visit was important to me. First her nurse came in and did the typical - medications, pain, fatigue, bowel and bladder questions. Then in came my doctor and the first thing she said to me ( After giving me a hug and discussing the Rutgers bowl game and the Giants so it really wasn't the first thing but the first medical thing) was "so your CA-125 was 18.7 in Dec then 17 in Nov so I call that stable". Now that sounded good to me. Then on to the complete physical.Not my favorite part of the visit but a necessity I know. Everything was good. She believes that the pain I had on my left side by my ribs was in fact muscular- (I seem to have a lot of that kind of pain) and probably caused by moving Grandma's stuff. Oh we talked about that too.
So I am free for 3 more months when I will have another exam and CT scan. OK time for the giant sigh of relief! And more wedding planning. And figuring out how to celebrate two years out of treatment in March.

Speaking of Grandma's stuff- we were back to the apartment on Monday cleaning out both bathrooms of all the misc stuff including rugs and toilet bowl covers.Then I started going through some stuff in the second bedroom. I found memorabilia and pictures from her and grandpa's trip to Italy in 1975 so I took it home . Today after the doctors I put it in a scrapebook and will bring it up the next time I see her.

Wednesday, January 16, 2008

First Ovarian Cancer bill of the year!

Well my advocacy work begins for 2008. Tonight I e-mailed Senators Lautenberg and Menendez about cosponsoring this Act.

"Take Action on the Senate Ovarian Cancer Biomarkers Act "

"The Senate will soon introduce the Ovarian Cancer Biomarkers Research Act. This bill will authorize the National Cancer Institute to make grants to public and nonprofit entities to establish research centers of excellence devoted to the discovery of ovarian cancer biomarkers.
This research to discover biomarkers has the potential to lead to the development of an early detection test, or help target treatments for ovarian cancer patients. Ovarian cancer has no effective screening test. This bill will help the federal government increase its focus on ovarian cancer, the deadliest gynecologic cancer."

Senators Dole and Boxer are introducing the the Bill in the Senate.

If you want to send an e-mail to your senators go to http://www.ovariancancer.org and click on Advocacy. A template is provided, so it is easy to send an e-mail to your senators.

Tuesday, January 15, 2008

A New Week

I spent the end of last week moving Matt into his new apartment in Blacksburg. Things went pretty smoothly I only wish the apartment was on the first floor and not the third. Boy , did I get a workout. I came home a bit bummed that Matt and Terry were away again.

Sunday night it was supposed to snow- 3-6 inches but on Monday morning I woke up to a light drizzle and no white stuff on the ground. Even though I am not teaching any more I still got the excited feeling that we would have a snow day.

I spent most of today(Tues) cleaning out drawers and organizing all of 2007 OC papers- insurance slips, bills , prescription receipts and articles that I printed out about clinical trials and new drugs. I sent off a small article I wrote for the Northern NJ NOCC newsletter. It was on the Omnibus bill that was signed into law and will support the Ovarian Cancer Control Plan and Johanna's Law- OC awareness and Education. Slowly but surely Congress is realizing that we need a screening test and education about this disease.

I only wish things were going better in NJ. Our work is cut out for us. I hope they reintroduce the law that will require insurers to cover a pelvic exam, ultrasound and CA-125 for women who are at risk or showing symptoms.

Speaking of CA-125 mine came back at 17 down a bit from last month and still normal. :o)

Saturday, January 12, 2008

Kaleidoscope of Hope Foundation Board Meeting- Jan 8

This was a busy week. Tuesday night I traveled to Madison to attend my first Kaleidoscope of Hope Foundation Board meeting. I am honored to have been asked by KOH founder Lois Myers to be a member of the board of directors of the foundation.

KOH is an awesome organization of volunteers that raise funds for Ovarian Cancer research and awareness. Check them out at www.kohnj.org

In 2007 they supported research at NYU, Fox Chase, Hackensack Hospital and they supported a Fellowship in Gynecological Oncology at the Cancer Institute of NJ.

The meeting covered an large number of topics and everyone kept to the agenda - I was amazed at how much work got accomplished. Everyone is looking forward to the Spring Gala to be held at the Westin Gov Morris Inn in Morristown on April 5,2008. I will be looking for Kaleidoscopes to use as the award that is given out at the Gala. I didn't know how many different designs there were for kaleidoscopes or how expensive they could be. On the board ,I will concentrate on Advocacy Issues and Turn the Town Teal activities.

This is a great group and I look forward to a successfull year.

Advocacy 101 Workshop - Jan 7

I have been working with Ellen Levine ( program director at the Wellness Community) and Betty Gallo over the past few months to put together a workshop on advocacy. I was happy that on Monday night Jan 7th we gave our Advocacy 101 Workshop to 7 other cancer survivors / caregivers at the Wellness Community of Central NJ. I talked about my LiveStrong Day experience and how to contact your legislators and Betty spoke about her work as a prostate cancer advocate. Betty's husband was a Congressman from NJ who passed away from prostate cancer. She helped to create the Dean and Betty Gallo Prostate Center at the Cancer Institute. She is an incredible women. I hope to make an impact on ovarian cancer awareness and research as she has with prostate cancer.

At the end of our talks we had some interesting discussions about survivorship issues- insurance, caregiver help etc. Then all the participants in the workshop agreed that we should meet again in March as a group. We would like to bring the various cancer survivor groups in NJ together to advocate survivorship issues at the state and national level. Ellen has agreed to let us meet at the Wellness Community. This is very exciting!

Tuesday, January 8, 2008

International Bowl Game Toronto Jan 5, 2008

We made the trip to Toronto to watch Rutgers play in the International Bowl. The 8 hour drive up was uneventful but cold - the temps dropping to 5 degrees on the way up. The Westin Harbour Castle was beautiful and the view from our room of Lake Ontario was incredible.
The game, held at the Rogers Centre was fun. Rutger won 52-30 over Ball state. Ray Rice had an incredible day with over 250 yards, 4 touchdowns and an 90 yard touchdown run. Wow!My niece and her husband joined us for the weekend as did our friends and fellow season ticketholders the Tankiewiczs and Bobals. We ate dinner one night at an Irish pub. It was a nice way to end the 2007 RU football season and a fun was to start 2008.
( I am still learning the ins and outs of this blog so here is a photo addition to the posting.)

Wednesday, January 2, 2008

Happy New Year

Happy New Year!
I've added a few links and information about local support groups. I am still learning the ins and outs of setting up this blog so I am sure there will be layout changes coming.

I have been busy organizing the Advocacy 101 workshop on Jan 7, 2008 at 7pm at the Wellness Community of Central NJ. I will be speaking along with Betty Gallo ( Dean and Betty Gallo Prostate Cancer Center - CINJ) and Marian Morrison (American Cancer Society).