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Rachel update .......help !


Susan

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:cry:

Stan and my dear Rachel called me this afternoon after leaving the Oncs. office- The news is not good, her films show tumors in the brain, kidney (not sure if it is unilateral or bilateral) and lungs.

the Dr. guesses 4-6 weeks - How can they say that???? Even they admit they can't say for certain- but 4-6 weeks !!! I am hoping that they are wrong and if they are not that the next 4-6 weeks will be memorable and pain free.

My heart is aching for her- Please keep those prayers coming her way-

She sounded good- strong for those of us that she loves but I know she is frightened-

please help me help my friend by offering me any advice that you may have learned along this bumpy road-

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I just checked, she posted 6/14/05 that she was NED, full body. What the hell is going on?

This can't be.

Does anyone know what happened or how this can happen in a month? We here scans not NED when she posted her great happy dance post?

Jen

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Oh Susan, I am sorry. The only advice I have is to let Rachel lead the way. I found with Earl if I mentioned anything about now or the future, he didn't want to hear it. But he loved talking and laughing about things we had done. But I am sure each person is different.

Please let our dear friend know that we are hoping and praying for her, there is always hope.

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This certainly stunk up my Friday. :cry: I can't believe what I'm reading and for the onc to give such a short time frame......I mean, why not more treatment?

And nobody can know how long. I find it hard to believe Rachel asked...

Please pass our continuing love and support along to Rachel for us, Susan, and tell her we are here for her.

I really don't know what to say beyond the fact that I just don't believe this. And I don't believe the doctor so abruptly put a time frame on things. I hope Rachel finds a way to deal with the fear this must have struck in her...and perhaps continue looking for tx that might help.

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Susan,we are praying very hard for Rachel.

I can feel the distress in your words.Remember that many of us have had short term death sentenses laid on us.I for example was given 6 months back in April 2003.I was again given only 3 months, 2 1/2 months ago.Yesterday I was out playing golf,and tonight I was shopping and walking with my wife.I may meet my maker in two weeks like they say but I feel ok rite now all things considered.The point at hand is try not to be too upset because they (the docs)don't really know how long anyone has other than going by outdated statistics.

Lets all keep pullin and prayin that Rachel proves them very wrong.

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Dear Susan,

Don't you just love Frank's post, and his words are so true. They thought my husband would be gone in 6 months or less, and right now we are counting down to 2 years coming up on August 7. Don't despair. One of my favorite sayings I hear on this site all the time is "It ain't over till it's over."

Did Rachel or her husband say anything at all about treatment or if they plan to fight this? I know that cancer in bone marrow is different kind of fight, but I understand it has been fought and won.

Again, please don't despair. Hang on to hope, Susan, and please tell Rachel we love her and miss her.

Love,

Peggy

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Dear best friend, Susan,

Allow me to answer you from 2 perspectives. First, MY best friend was dx'd with terminal ovarian cancer at age 33. We were together the next 2 years and as Ginny said, Karen led the way for us. She was so brave that I felt no right to be floundering around. It was a difficult time but we made it together. It was not to be that Karen's life was saved and part of me went with her, so I do feel your pain and sorrow. I am afraid nothing any of us can say will be able to remedy that for you :cry: .

Next, in the fall I was told there was NO light at the end of my tunnel and most likely would not see flowers this spring. And you can see how wrong those words were. I am here. I saw flowers. In fact I planted some and then picked them. So prognoses can be far from reality.

So dear Susan, just know that Rachel's cyberfriends are praying with you for her, and we also are praying for you, dear girl.

My most heartfelt prayers for Rachel and you,

(((Susan and Rachel))),

Kasey

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I hate hearing this. Rachel is such a sweet and caring person. She is a wonderful friend to all of us here and some of us have been blessed to have been able to meet her in person.

I wish I knew what to say, but I believe the others said it best. Please know that I am saying so many prayers for Rachel, her family, you, and all those who love her. Please let her know.

((HUGS))

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thank you all (again, over and over...) for your kind words.Let me try to answer some questions that some of you have asked- please forgive me for not replying to each of you separately, I just thought it might be easier to do a general response...my mind is still spinning.....

Some of you asked about her previous tests- yes they were NED- Her radio-onc told us several months ago that although at that time she had tests that also showed NED - it would surely at some point rear its ugly head someplace- and that is what it has done this time.

Her PCP shared an email with me that the ONC sent him today- What he stated is that The disease is "progressing rapidly" and that he is recommending Hospice when she returns to Alaska at the end of next week- From his email I see also that I misinformed you earlier-according to his email it is not in the kidney but it is in the Liver.....along with the lungs and brain-

In response to why the ONC gave them a time frame....I think that both Rachel and Stan were so shocked by the news that they probably asked the ONC what the results "meant" and that is when he gave them an estimated time frame- they don't like it when they are asked about "time" but they answer to the best of their knowledge and always say that there is really no way of knowing-I am praying that they are way off.......her group of physicians have really been great and at the end of his email the ONC even mentioned that "it crushed me when she told me that her 50th birthday is next week..."

I am traveling right now and on the east coast- I plan on returning home when they are scheduled to return Ketchikan- our 50th birthdays are two weeks apart and I plan on celebrating with her when we both get home- we always said we were going to go to Greece for our 50th- who knows...we might still get to do it -

Again, thank you all- I am hoping that this all makes sense,that I have answered your questions and isn't too rambling and jumbled......I know you all understand- thank you, thank you, thank you!!!!

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Susan,

This breaks my heart for Rachael. She is so very sweet and kind. As for the time frame...forget it. If they are close then that is the news around here. We don't take the docs word each time. There are too many of us still alive and feeling pretty good for that.

Tell Rachael we all love her and that she is in our prayers. We hope to hear from her and you soon.

Nina

Happy early birthday to both of you.

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Damn... this diesease is just incidious. Although I know it is hard to "ignore" what the doctor said... I think Rachel needs to try her hardest to do just that. Will is a very strong thing so is positive thinking... I wish Rachel both of these things in the next few days so she can continue this fight.

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