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Unread 05-22-2002, 09:51 AM
Just Venting

I was just watching the noon news coming out of Phila. One of the lead in stories was about Michael J FOx and Mohammed Ali (having been sponsered by Arlene Spector, a PA senator) testifying on Capitol Hill for Parkinson's research funding. I wish no one ill health, but come on. THis is probably Michael J Fox's third time pleading with Congress. We are all aware of the visits by celebrities to Washington to lobby for various disease research. Who is our advocate for ovarian cancer research? I know that an exact diagnostic blood test is close. But you know what? I want a gosh darn cure for people with Stage III and IV!!!! I just wish I knew how a regular person like me could become politically active and get to lobby congress for more research money!!!!! Any advice welcome. Does anyone else have days like this?

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Unread 05-22-2002, 11:58 AM
Just Venting

I decided to put my mouth where my brain is. I just called my own Senator's office. Four years ago while still a college student in DC, my son Jeff interned for this senator. I mentioned this as well. In hopes it would catch the senator's eye. Ya never know. Of course I was speaking to an aide. He listened pleasantly enough, and said he understood my frustration.
An intake person will be getting in touch with me. It is so frustrating for me. I feel perfectly well, am only working parttime, and I feel such a need to do something in regards to ovarian cancer. I'm just not sure where to put or use my energy. I'll let you know if anything happens. Perhaps I should email Michael J Fox and find out his secret to getting their attention on Capitol Hill.
I think I will............ oxkarenann
Unread 05-22-2002, 12:41 PM
Hi Karenann

Anger is good when we can turn it into action.
I agree that ovarian cancer needs more attention and research. I didn't have that one. Just uterine, cervix and vulva which don't get alot of attention or education either from what I can see. But, I would love to see more research going into ovarian cancer detection and cure. Atleast the one's I had gave off early warning signals and women can take action in the early stages.
FYI, I just ordered Fran Drescher's Book "Cancer Schmanser: which I can't wait to read. She has been doing the talk show circuit to promote the book and because she says she wants to raise "awareness" on these cancers. She has aligned with the Gildna Radner centers which I understand have 8 chapters going.
Perhaps you could get some information from the GR center's on what you can do or even write to Fran Dresher via her publisher and see how far she is taking her activist project and if there is a place for you there. I would think the American Cancer Society might have some volunteer committees or links to activist organizations.
Anyway these are just some random thoughts I had that I wanted to pass on for what it is worth. I bet once you start digging a bit you will find lot's of places to put your time and talent!
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Unread 05-22-2002, 03:52 PM
Just Venting

Unread 05-23-2002, 11:37 AM
Just Venting

Way to go

A and for you.

In a past life, I used to read a lot of feminist stuff, and I remember a saying - that the world would be a different place is each of us wrote 5 letters (this was before email) a week on issues we cared about.

Karenann, today you did one little step to make the world a better place

Unread 05-23-2002, 12:51 PM
Just Venting

Thats great that you did that Karen!!!!
I saw that news article last night and I agree every diease needs this type of backing by the gov't. I think that if dear Gilda were with us, she would indeed be a strong senate advocate for ovarian cancer. Her clubs do such wonderful work for patients of all types of cancer.

Good for you!! You should be very proud of yourself!!

M. xoxo
Unread 05-23-2002, 01:59 PM
Just Venting

WOO HOOO !!! Karenann!! You go girl!

WE just had our annual Relay for Life here in town and my son's school usually has a team in it. This year, because of my treatments, I couldn't get it together, so we collected money, raised almost $1000.00, thats pretty good considering theres only 150 students. Anyway........since I am being treated for leukemia, they were going to ear mark the funds for the Leukemia foundation but I asked them to PLEASE make sure that the gyn. cancer area got our donation in honor of my dear sisters here!! Guess what? The American Cancer Society sent a letter of appreciation and said that they very rarely get a donation request for this area! I know $1000.00 isn't much, but its a start!

Hang in there ladies, awareness is just around the corner!!

Unread 05-23-2002, 02:17 PM
Just Venting

Dearest Susan
Time and again on hystersisters I am just bowled right over by you and your wonderful, unselfish attitude. We should all aspire to be just a little more like you! So often my heart is jealous of all the attention breast cancer gets. I even hate to admit this. Then I see what you just did for gyn cancer in the midst of you battling leukemia, and I am literally brought to my knees.
I think knowing you will eventually make me a better person. I can hope anyway!!!!
Much love karen
Unread 05-23-2002, 06:03 PM
Just Venting

I very rarely reply but often just check in to see what is up on this site. But I had to reply today.
Karenann, I too used to be almost jealous of the attention that breast cancer gets. I am ashamed to admit this but while I was having radiation treatments and driving 1 1/2 hours for the 15 minute treatments I got a call from the american cancer society looking for donations. The woman went on to say that a cure needs to be found for breast cancer and I was tired and scared and I got angry and told her that a cure has to be found for all cancers and I told her I was in the middle of my own cancer battle and it wasn't breast cancer. Breast cancer seemed to be politically correct to talk about and raise money for but other women's cancers were barely mentioned. Breast cancer survivors could get a prosthetic breast but I had lost my vagina to cancer, it had shriveled up to less than an inch in length and had tightened all up from scar tissue from the radiation. I could have sex with my husband without a breast but now what would I do without the ability to have sex with him and what would happen to my marriage? And when I went back to work and people said "you look great, glad to have you back" and they expect your life is back to normal because you look normal you can't really say "well, I lost my vagina" to your family and friends. You just deal with it alone at home. My husband happened to be very supportive and 4 years later I ended up having my vagina rebuilt and the story ends happily. For years I went back to my gyn/onc and cried to him that I wished I would have had breast cancer. He finally hooked me up with a reconstructive surgeon. After that I went back to the hospital at the urging of my reconstructive sur. and gyn/onc and talked to other patients who were having the same problems I had had to give them support. I also do all I can to spread the word about gyn cancers and how they are serious and we need to push for a cure. It is great that breast cancer gets the attention that it does but all gyn cancers need that attention. When I got cervical cancer friends told me "oh, they just freeze that off, it's not like real cancer". Cervical cancer isn't even reportable to the tumor registry. Yet many lives will be lost this year to that cancer.A cancer survivor spreads the word better than anyone else that we must push for a cure.
shullet2 you are an inspiration. My prayers are with you.
Unread 05-23-2002, 07:40 PM
pardon the repeat

But a while back I posted this in another context. Add my rant with a particular turn to it. A while back I was studying up on when they followed up with preventive radiation after uterine and cervical cancer. I was stunned when I sorted out what the newest clinical trials are claiming. Basically, when you sort it all out they are claiming they can save money by not doing followup radiation because there is no statistical increase in survival time. HOWEVER they clearly say there IS increased risk of reoccurence. The point is that they figure if it reoccurs in the vagina they can just remove that when the time comes and survival doesn't change. It is as though they just figure we can live without that particular part of us. I guess a breast is out there so they can't just ignore it. They make such a big fuss about doing breast reconstruction and, hurriedh, yours is the first I've ever heard of vaginal reconstruction. What is this? It isn't worth saving if the guys can't see it? Sorry. The whole sneaky quality of these studies sets me off. Instead of studying how we can save our anatomy and instead of fighting to return us to normal, "they" are instead bargaining away our not so spare parts.

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