More Words

Yesterday on Facebook, CINJ posted a link to the NY Times Well Blog entry "With Cancer , Let's Face It Words are Inadequate" by Dana Jennings, an editor who is post prostate cancer.

I read it with interest. When I got to the end I felt that reading Dana Jennings' entry was like listening to the women in the different support groups I attend talking about WORDS they use to describe themselves and WORDS they heard - good and bad. Even when you limit the discussion to patients who experienced Gynecological Cancer patients there is still a wide range of opinion on what words we use. One word is not better than another they are just that - different. And differing opinions makes life interesting.

For the record:

• I had one of those not so good cancers.Right now I am disease free.
  
• I am on a cancer Journey. It is with me for life. Sometimes the fun of life gets rained out like a baseball game but most of the time the journey is like a football game - played in all kinds of weather.
• I do not think of myself as a victim or unlucky. I did not do anything to cause this cancer the genes in my cells went ( in unscientific terms) a little nuts. Back in 2005 I was sad that I had cancer. Now I accept cancer as part of my life.
• I do not think of myself as brave or a fighter. I've done what I had to do to live- surgery , chemo (9) and two and a half years later- surgery and chemo( 6) again. I lost my hair and was tired and my toes and fingers still tingle and I have trouble remembering names of things but if I recur I will do what I need to do all over again.
• I have been told on occasion " You have such a positive attitude". Ask my family and very close friends and they will tell you the negative does slip in there.
• I am a survivor- I have experienced something that other people have not. NCI studies have shown that 30% of the people who live the cancer experience may exhibit post traumatic stress syndrome just like others who have experienced highly stressful and life-threatening situations. So I am a survivor!

I will continue to LiveSTRONG.

Dee
Every Day is a Blessing!

Words from an OC Survivor

I participate in the online OCNA Support Community. Another women posted this essay about her experience with Ovarian Cancer . It really says it all. Thanks Ch*******s for letting me share it.


Ovarian cancer crept into my life undetected. I didn't know it was there, and so I didn't fight, kick or scream. It simply moved into my abdomen and made a home. I don't know how long it had been there before it was detected. Years, maybe. It stole life as I knew it.

It sits on a cliff above my consciousness. It is always there, and I know it. I try to ignore it most days, but it is waiting. At some point it may hurl itself into my life again, and I will have to battle once more. I am watching. I am waiting.

If it attacks again, I won't be so shocked or surprised. I am more prepared. I have an army of supporters and knowledge that I didn't have before. I am aware that the thief may come back, but I don't choose to live my life in fear. I will remain optimistic that I will remain cancer free.

The thief may ultimately take my life, but it won't be today. It won't be tomorrow. I can live life to the fullest, savor every moment. I won't hold back anything. I will ignore minor problems and enjoy all the wonderful people and times in my life. For the moment, the thief is handcuffed, and I am glad.

Dee

Every Day is a blessing! Today I was blessed with warm sunshine and a bunny visiting my backyard.

Call your Representative TODAY!

The following was received from the Ovarian Cancer National Alliance:

We’re struggling to get Congressional support for the Dear Colleague letters for Johanna’s Law and the DoD Ovarian Cancer Research Program. These programs are so important, but If we don’t get enough Representatives signed onto these letters, the programs won’t get necessary funding.

First Call - for Johanna's Law

1) Go to http://capwiz.com/ovarian/dbq/officials/ and enter your zip
code.

2) Call the office of your Representative in the House. State that
you are a constituent and that you need to speak to the Health L.A.

3) When talking to the Health L.A., state what city/town you're from,
and briefly tell them about your organization.

4) State that you are calling to request that the Representative sign
onto a Dear Colleague letter requesting $10 million for Johanna's Law, so
the CDC can continue its gynecologic cancer education and awareness
programs.

5) Say that the tentative deadline for signers is this Friday. Ask
when would be good a good time to follow-up to see if the Congressman
signed onto the letter.

6) Tell them to contact (if your Rep. is a Democrat) Sarah Dash in
DeLauro's office or (if your Rep. is a Republican) Brian Fauls in Burton's
office.

7) Thank them for their time and then ask if you can speak to the
Military L.A. about a Dear Colleague for the Department of Defense's
Ovarian Cancer Research Program



Second Call - for DoD Ovarian Cancer Research Program

Call the office of your Representative in the House a second time. State that
you are a constituent and that you need to speak to the military L.A.

1) When you're on the phone with the military L.A., state you are a
constituent, what city/town you're from, and briefly talk about your
organization.

2) State that you are calling to request that the Representative sign
onto a Dear Colleague letter requesting $30 million for the Department of
Defense's Ovarian Cancer Research Program.

3) Tell the L.A. that the deadline for signers is next Wednesday (the
17th). Ask when it would be a good time to follow-up to see if the
Congressman signed on.

4) Tell them to contact (if your Rep. is a Democrat) Dan Zeitlin in
DeLauro's office or (if your Rep. is a Republican) Brian Fauls in Burton's
office

Keep track of whether your Representative has signed onto the Johanna's Law Dear Colleague letter by going to http://tinyurl.com/JL2011. Page will be updated when we are notified Representatives will sign the Dear Colleague.

Dee
Every Day is a Blessing!

OVA 1 Test Available

Ova1 test a bio-marker blood test to determine if ovarian masses are cancerous or benign was approved by the FDA on March 9, 2010. The test developed by Vermillion, Inc uses five biomarkers combined in one test. It is available through Quest Diagnostics. The test should be use in conjunction with regular physician exams and radiological tests.

Quest Press Release

News Article

Vermillion, Inc Site

Although Ova1 in a study at 27 hospitals found 92% of the cancers versus 72 found by normal methods there were also a number of false positives.

Dee
Every Day is a Blessing!

Sometimes What We Wonder About Actually Happens

Yesterday, I went to my local NOCC meeting( Northern NJ) . The group meets at the Carol G Simon Center in Morristown, NJ on the first Saturday of the month. I haven't been to a meeting in a few months so it was great getting together with everyone and learning that due to the efforts of the members of the NNJ-NOCC , awareness of Ovarian cancer in NJ is on the rise.

At one point in the meeting we learned that a member, after being treated with a chemotherapy agent for six months, had her cancer continue to grow. This is not unusual with regard to ovarian cancer- sometimes the chemo drugs work, sometimes they work for a while and then are no longer effective and sometimes they don't work at all. When they don't work the woman is switched to another drug. One member spoke of her mother's tumor tissue being tested so that the doctors knew what chemos would work and which ones would not. We wondered if there was a drug response test. (Turns out that there is one and it is called ChemoFX. ) If there is one , why when a women is diagnosed with ovarian cancer aren't her tumors automatically tested? Why put a women through the chemo and all those side-effects, if it won't work? Why use a drug and its associated expenses( the drug itself and its administration) if it won't work?

So today I decided to look in to this ChemoFX test. On its website I found a link to an article dated February 27, 2010 which announced that the NCCN( National Comprehensive Cancer Network) recently updated their Principles of Chemotherapy section of the Oncology Guidelines for ovarian , peritoneal and fillopian tube cancer to include chemosensitivity/resistance tests. They updated the guidelines based on studies presented at ASCO that showed an association between the tests prediction of response and progression free and overall survival. It was stated that some member institutions have used the test to help choose among chemotherapy treatments.

So all our wondering around that table in north Jersey actually makes sense to experts from NCCN.

Dee
Every Day is a Blessing! Today I am blessed to have friends who call just to say Hi!

I added a page to this blog and then another and .....

Over the past few months I was looking into moving my blog to a Wordpress blog since I noticed that the Wordpress blogs allowed a blog to have pages. I found that over the past 2+ years I have accumulated a large number of links to pretty valuable information about ovarian cancer. I wanted to organize all that information in a better way than to just add another link to the list of interesting sites. Well, the other day after I updated this blog I found a blogger gadget that would allow me to add pages. It is amazing how little things like new gadgets could make me so happy. Anyway ...I got to it and after a bit of a learning curve started to add pages. Here is what I added:

• OC Support groups - this page lists OC support groups in NJ as well as online support groups and one-on-one support
• OC Resources - There are 13 links of general OC resources from the symptom consensus statement to the NCI to staging information from ACS. There is also a list of NJ ovarian cancer foundations and national OC organizations.
• Local Events - this I will update with ovarian cancer and general cancer survivorship events in the NJ/NY/PA area. I've 3 events posted so far but more to come
• Products, etc - this page lists products like an OC cookbook, OC shirts and wonderful cards. I also included two foundations one that provides "Bling" to cancer patients in the hospital and one that will match volunteers/ employees with cancer organizations.

You can find a link to the pages on the left of this blog.

Still not done... I decided to move my blog list to the left column and only show 5 blogs with the ability to show all. I also moved Ovarian Cancer news by Google to the left also.

Well I hope all you followers like the new pages and I hope new readers will find them helpful.

Dee
Every Day is a Blessing !

"Do These Genes Make Me Look Phat?"

FORCE ( Facing our Risk of Cancer Empowered) is a non-profit whose mission is To improve the lives of individuals and families affected by hereditary breast and ovarian cancer. They will be holding what looks to be a very fun and funny benefit in April in New York City. More details are listed below and can be found on their website.

The 1st ANNUAL NIGHT OF LAUGHTER, LIVING AND LOVE

Do these GENES make me look PHAT?

To benefit FORCE: Facing Our Risk of Cancer Empowered

Presented by: Hudson Terrace

Join Host Judy Gold and friends
Peter Bales, Mike DeStefano, Jim Florentine, Valerie Jean Garduno,
Jessica Kirson, Frank Liotti and Special Surprise Guests

Monday, April 12, 2010, 6:00 p.m. - 9:00 p.m.

Cocktails l Hors d’oeuvres l Live Auction

Hudson Terrace
621 West 46th Street
(between 11th and 12th Avenues)
New York, NY

*attire gene (jean) chic

Tickets:

VIP tickets: $1500 for table for 4 – reserved seating
General admission: $175 ea or blocks of 10 tickets $1500

Dee
Every Day is a Blessing!