CDC Symptom Diary Card

Friday, December 24, 2010

Merry Christmas

I thank God for this Joyous Day. 

Merry Christmas to all of you!


Thursday, December 23, 2010

Repost from the Ovarian Cancer National Alliance Johanna's Law

 
THE OVARIAN CANCER NATIONAL ALLIANCE 
APPLAUDS ENACTMENT OF JOHANNA'S LAW:
THE GYNECOLOGIC CANCER EDUCATION AND AWARENESS ACT

Washington D.C. - December 23, 2010. The Ovarian Cancer National Alliance is pleased that the President has signed and enacted Johanna's Law: The Gynecologic Cancer Education and Awareness Act.  The 2010 version of Johanna's Law continues to authorize the Centers for Disease Control and Prevention (CDC) to develop and implement campaigns to raise awareness and educate women and medical professionals about the signs and symptoms ofgynecologic cancers.  The law allows the CDC to work with national organizations to leverage public-private partnerships and avoid duplication of services and materials.  Further, in order to advance these efforts, CDC funding may be available to support public or private non-profit organizations in their efforts to increase awareness of gynecologic cancer symptoms. The Ovarian Cancer National Alliance continues to work with Congress to increase funding for - and support authorization of - Johanna's Law. 

This is a reauthorization of a previous law.  The law was originally enacted in 2007 and provided up to $16.5 million over three years to the CDC for awareness and education through a national public service campaign that includes written materials and public service announcements. The CDC-led campaign, Inside Knowledge: Get the Facts about Gynecologic Cancer, seeks to raise awareness of the five main types of gynecologic cancer:  ovarian, cervical, uterine, vaginal and vulvar.  Since 2007, champions and advocates worked to secure funding to implement the law through the annual appropriations process.

Rosa DeLauro, Representative from Connecticut and ovarian cancer survivor was one of the champions of the bill.  "No one should have to depend on luck, and this bill will help to educate women, raise awareness of health care providers, and ultimately, save lives," she said.
"As a cosponsor, I am very pleased with the passage of Johanna's Law. I believe it will help inform young ladies as well as physicians about gynecological cancers," stated Representative Dan Burton. "It is extremely important that this be caught early. That is why this law is so important, because it gives women the opportunity to find out about the problems they may face so their survival rate can be increased substantially. A lot of women have lost their lives or had their lives shortened because they were misdiagnosed or the cancer was not noticed at all. This legislation not only improves awareness for the public but also for professionals in the medical field."

According to Dr. Karen Orloff Kaplan, CEO of the Ovarian Cancer National Alliance, "Johanna's Law is absolutely essential because it provides for robust educational programs for women and those who care for and about them - the only way currently to reduce the number of deaths from this hideous disease." Death rates from ovarian cancer have remained unacceptably high for more than 30 years; currently, fewer than half of women survive five years from diagnosis.  Because there is no reliable early detection test, awareness of symptoms is key to detecting ovarian cancer.  "Because ovarian cancer is the deadliest gynecologic cancer, it is crucial that the message about symptoms be front and center in this campaign."

The Ovarian Cancer National Alliance is the foremost advocate for women with ovarian cancer in the United States. To advance the interests of women with ovarian cancer, the organization advocates at a national level for increases in research funding for the development of an early detection test, improved health care practices, and life-saving treatment protocols.  The Ovarian Cancer National Alliance educates health care professionals and raises public awareness of the signs and symptoms of ovarian cancer. The Ovarian Cancer National Alliance is a 501 (c) (3) organization established in 1997. 
Ovarian Cancer National Alliance
910 17th Street, NW Suite 1190
Washington, DC 20006
(202)331-1332
ocna@ovariancancer.org 

Monday, December 20, 2010

Vocational Rehabilitation Update

Fabulous day with UW Voc Rehab department.  I now feel a sense of hope and confidence that there may be work I CAN do.  I met with a wonderful woman who was kind and sincere.  She took some time to warm up the conversation with nice holiday talk and then proceeded to discuss WITH me my needs and wants.

After at least an hour of talking about my vocational history, medical history, and potential hurdles we created a workable plan of action.  First thing being first, I have nothing to wear to an interview.  She will reconnect me with the state DVR to assist with wardrobe and possible free computer training.  I am going to spend some time on my own laptop to get re-familiar with the basics.  I'll probably need to be re-tested on my computer skills...ugh.  I've never really been a computer "expert", but I do learn new tasks fairly easily (maybe I need a little more time now than in the past).

The ideal scene is for me to first land a part time job that has afternoon hours, that's not sales and in a low-stress setting.  I expressed that because of my fears of recurrence and difficulty working under high stress levels, it was really important that I work with/for people who actually like me.  It sounds so "grade school" but at the end of the day we spend 30% to 50% of our time on job related activities.  That being said, why would I want to spend my last few years in an environment that's really stressful or around negative people who don't like me.  I just don't want any part of it.

I am not going to compete with anyone for a CEO job, not now.  In the past, I had dreams of owning my own company and having a stable retirement.  I could still start a non-profit group that helps women with ovarian cancer, and I'm sure I will, but I can't do that without first being stable myself.  I am not planning on using my job to fulfill my social needs, I just don't want to work around a bunch of sharks.  I want to have the chance to enjoy work for once in my life  ;-)

When it's determined that I can handle part-time work, the goal is to progress to full-time work.  That could be either growing the current part-time to a full time, or getting a new full-time altogether.

All this will depend on how or when a cancer recurrence appears.

I let her know that ideally I want a job where I work from home. If I work from home and have flexibility with my projects, then if I have a recurrence, I can restructure my workload around chemo, etc.

If I don't get the ability to work from home, then I run the likelihood of losing my job every time I get a recurrence.  That I cannot bear, I just don't want to do that.  Can you imagine?  Our economy is really not in the best of health, as everyone knows, so the last thing I need is to have to find a new job every time I finish a chemo program.

Here's where I find myself wondering why I never got married. I always wanted to be married, but no guy ever wanted me that much, so I'm alone.  I have my mom, dad, sister, brother and aunt.  I have a few good friends.  But I am alone, for the sake of my personal life.  It would be so wonderful if I had a hubby who took care of me, but I don't.  So I will forge ahead and do the best I can.

That's a whole new area of depression, that I don't want to talk about right now.

Anyway, I'm on the right track.

Be Love