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Too many metastases means terminal. Too many metastases means terminal.

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Unread 05-29-2004, 10:12 AM
Too many metastases means terminal.

You Go Girl!!!!! I am so proud of you. You are so strong and such a good advocate for yourself. I also believe your example will be an inspiration to others in their fight against this disease and insurance companies.

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Unread 05-29-2004, 10:58 AM
Too many metastases means terminal.

s Linda

I'm sorry I am so late coming to your post.
Kaiser Permanente has a reputation for being quite stingy with referrals. It sounds like you have been an excellent advocate for yourself. Too much of our current health care system is about making money by any means possible. Too often health organizations hope that we just accept their no and walk away.
Saves them bucks. We then need to complain loudly and forcefully. Go Linda.
Last summer my son fractured C5 in a car accident. His fracture was unstable and he had immediate surgery. Bypassed the halo frame. About three weeks post surgery he developed horrible nect pains. I literally spent three eight hour days on the phone begging for approval for another CT scan of his neck. It kinda makes you understand the term "postal."
Now what would have cost my insurance company more, to agree to a CT scan or caring for a quadriplegic 20 year old for the rest of his life.

Unread 05-30-2004, 07:47 AM
Too many metastases means terminal.

OH, Tenacity!
Great work! Way to go! It's so refreshing to see someone actually get what they need from their insurance company - it shouldn't be so difficult though!

I'm glad you have found a new ONC that is functioning with more than two brain cells. I really wonder about some of these docs in oncology. My husband is an ER doc and literally has to argue with their ONC group to admit their end stage patients that are dying and in horrific pain. Because of that, any patients that he dx with CA in the ER, he goes in, shuts the door, gives them the referral to their group because he is required to, then tells them to RUN to a different hospital. Some of them just seem to have completely lost their compassion. I don't get it!

Anyway - sorry to get off on a tangent. I think these new folks have got it going ON! WOO!

You seem to have such a great attitude! And that is at least 99% of the battle in my book. Have you ever read Perfect Health by Deepak Chopra? He is an MD but also is an ayurvedic medicine Dr. The book talks about learning to meditate and connect with your body on the cellular level and the mind's ability to heal the body. It's a good read. Personally, I am not very good at the meditation thing, but then, I haven't had any real "reason" to do it as of yet!

Please keep us posted! Lots of thought snad prayers coming your way!

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Unread 05-30-2004, 09:07 AM
Too many metastases means terminal.

Linda , my thoughts and prayers are with you at this time. I am new to this board and I cant get over the help and compassion you get from here. I am waiting for results from pelvic mass she found on my ovary. Seems small next to what you are dealing with. BUt I feel your a fighter and keep on the Doctors etc . YOu have to because your the only advocate for your self. I found out the hard way. But if you ever need to talk to you can email me just to vent. Good luck and Keep that fighting spirit up .
Unread 05-30-2004, 05:11 PM


You are amazing and an inspiration to all of us fighting off this terrible disease. I want you on my side if I ever hit a brick wall!

Sounds like you've made some progress, good for you!!! I'll be praying for you. Am really happy to hear that you haven't given up hope.

Unread 06-01-2004, 09:26 AM
Too many metastases means terminal.

Linda -

I'm so proud of you! You certainly deserve the screen name "tenacity." My brother has a very rare disease called Wegener's Disease which took a long time to diagnose because most doctors have never heard of it because of the rarity of the disease; he's even written up in some published medical reports. It's some kind of immune disease and a rheumatologist diagnosed it. To treat it he had to take cytoxin which can cause bladder cancer. They check him every 3 months for the bladder cancer and he has had some cancer cells in the bladder which they treat. He's doing very well and Wegener's has been in remission for 10 years. In April he found out he has the very beginnings of prostate cancer. He was worried that the bladder cancer had metastasized to the prostate. His oncologist assured him that he had 2 separate cancers. So, I'm sure the same can more than possible for you. Keep the faith!! You go, girl!! Carol
Unread 06-01-2004, 07:02 PM
Too many metastases means terminal.

I am praying for you as I type this. And I just want to say that I am in awe of you. Your spirit is remarkable and as I read your posts I was reminded of a speech that Winston Churchill gave in which he said "Never, Never, No No Never give up!!!" Hugs to you dear one. Also I read what you said about clinical trials and you mentioned Lance Armstrong. Several months ago there was a series of articles in our home town newspaper about a local oncology nurse that participated in a bike ride cross country with Lance Armstrong for the sole purpose of raising awareness of clinical trials. She said that Lance was alive today because of a clinical trial!
Unread 06-02-2004, 06:00 PM
Too many metastases means terminal.

Dear Linda:

I want to reach out beyond the constraints of this computer and give you a big fat hug. Your story really touched my heart and I want to say a big prayer for you tonight at my little alter. In one of my classes, we were assigned a project- to create an alter. It must contain a piece of our past, a piece of our present and a piece of the future. I have photos of my friends, cards and well wishes, candles, postcards of New York, Paris, Venice, places I wish I could go. It has helped me. I can lay in bed, light a candle by my alter and see the warm glow cast on my life.

Why not try it, Linda? You may find peace in that little, highly personal space.

Much Love-
Unread 06-03-2004, 07:28 AM
Too many metastases means terminal.

Huge 's

I just read your post and I can feel that you are a strong person, you will beat this thing. You have my prayers and best wishes

God Bless and watch over you
Unread 06-03-2004, 07:49 AM
Too many metastases means terminal.

I have read your post over and over and I still don't know what to say. You are on my mind day and night.
Whatever you do, do NOT just give up and quit. I get so tired of everything having to have a medical answer. And I am the worlds' worst at hounding them until they give me medical answers. But there comes a point where you have to listen to that voice deep inside yourself.

Please keep us updated on your progress.....yes, I said progress!! as in "progress toward beating this blasted thing".

Keeping you in my daily prayers,
Nancy J

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