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A long update on me and the plan


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I just have not been able to post. I am have been too upset and sick.Thank-you for the emails.

Brain mets were confirmed (2) and I just finished WBR (20). I am a dishrag from it.

New node in other lung not sure what it is.

New stuff in right lung is now considered fibrosis.

Pet showed met to liver, Abd. MRI said it isnt a met.

Pet shows hot spot on T-10 of spine, not confirmed could be DDD.

I have had this bizarre left flank pan for a month now that they cant figure out.

Didnt have ovaries removed last week as I was too sick from WBR and got my first horrific period in a year the week I was scheduled. Not sure if I will have surgery. Ovaries are not confirmed yet as mets as its quite unusual, but possible and they are huge.

I have also had a lot of weird neuroendocrine symptoms since a week before I got the bad news ie, diareah, dizzy,feel weak, no appetite, tachy heart etc...

Start Topo tommorow or next week. Making decision tonight. Usually, you get a break for a week or two before you start chemo after WBR. I can start right away, but I am so blown I am not sure what I should do. My radiation Doc allowed me to have tx's on the weekends too to get me to chemo quicker.

Mentally, I am a mess. I am very depressed and can't help but think about the poor prognosis. I almost cant handle reading the board because of the bad news and the way it possibly illustrates my own future. I just cant seem to pull out of the hole I am in. Chardonnay and fudgesickles arent even working this time. My plan is to just put one foot in front of the other and try. I am so upset that my family must go through this, again. My husband is also ill w/ Hep. C and is now being worked up at NIH.

I hang onto the few extensive's who are still surviving and can only hope. Wish more extensives would post.



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Hi Jen..

I was just thinking about you this morning and wondering how you are doing and then here you are!

So good to have some words from you, even if it is not the best of news, it is still news!

You do have your share of stuff between you and now sick hubby. You will get through all of this. I do like your plan. It is the only thing that I can think of doing sometimes too. Amazingly, when things seem so out of control and it seems as if there is no solution or end in sight, something always comes down the pike that shows the way.

You are doing a great job, Jen. You have grabbed ahold of every resource available and fought hard. All the hard blows will pay off, Jen. You have a whole crew of great professionals and friends on your side. You are a remarkable woman and I admire your strength and courage!

love, Cindi o'h

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I am not good at replying, but I saw that you were looking for extensives to respong. I feel bad that you feel bad. I have been in treatment since Oct 2004. They put me in hospice in Nov 2004, thinking I was supposed to die. I didn't know why I was in hospice. I thought I needed to rest (what a dummy!) I got better practically overnight, and I had wonderful physical therapy and chemo, my dr. would not do any more than 6 months, my tumors are almost all gone, lungs and liver. I sstill get bone treatments. I don't know where I go from here; I just am glad I got to go back to work, an I feel great. I don't know what else to expect, but for now I am very heppy to be anywhere. If I can help anybody, pls let me know. I have great optimism, because the alternative is something I'm not interested in.

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