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Unread 02-26-2003, 09:10 PM
Frustrated & Sad

Due to a mix-up in scheduling (doctor was at one hospital, I was at the other), I was unable to meet today with the gynecological oncologist who will handle my case and my surgery.

I did, however, meet with a gynecological oncologist resident and gyn onc fellow, both of whom said my tests and scans likely indicate Stage III. Aside from the primary 8 cm tumor next to my uterus, there is apparently also another, "less-defined" mass (2.5 cm x 5 cm), which appears to be on the omentum. My left ovary looks fine. And that's about all I know.

I am blessed that they were able to fit me in for surgery next Thursday, March 6th. But I am also terrified.

My CA125 is 161. Does that mean anything? Or is it just a figure used to measure progress? They said that if they find what they suspect, my treatment would likely consist of 6 cycles over 18 weeks of Carboplatin and Taxol. I was fine for most of the conversation, until we started talking about losing my hair. Though I knew this, I lost it at that point.

Also, a friend offered to donate blood, in case I should need it. Has anyone else had friends give donor-directed blood? Is it necessary?

I'm usually so, so strong. But I'm emotionally struggling (hopefully only temporarily).

I worked so hard last year to build a foundation to launch my own business, and now it appears I will have to cancel every contract for the year. And everytime my sister calls me, it grates on my nerves and I don't feel like talking to her. She mostly always yells at me, and she is the one person in the world that I struggle to get along with. Now, with this looming, she is deeply concerned and trying to call all the time. But it irritates me, and I feel like a horrible sister. I am feeling guilty that I want to talk to my friends instead of her.

Sigh. I wish I had a kitty. But I'm allergic. Living alone when dealing with this is a little rough.
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Unread 02-27-2003, 12:47 AM
Big hug!

I'm so sorry you're having such a rough time. I can't answer a lot of your questions, but I wanted to lend some support. Regarding the CA-125, I understand it's a useful indicator for some types of cancer, but not all. So I'm not sure how important it is in your case. Regarding blood donation, I had to sign a release saying it was ok for them to give me blood, but they said it's rarely needed in this type of surgery. I lost a very minimal amount of blood in both my hyst and my staging surgery. You might ask your doc if having your friend donate is a good idea. I had asked about banking some of my own blood prior to my first surgery and was told not to bother.

It must be awfully hard to be dealing with this alone and having to worry about your business too. You're not alone though, because we're all here even if we can only give you virtual 's. I think you need to do whatever is going to help you cope best and not worry if that means talking to friends rather than your sister. You have enough to deal with right now. You're NOT being a bad sister! Can you screen her calls with an answering machine so you only talk to her when you feel up to it? Do NOT feel guilty about this. It's ok to do what you need to do to take care of yourself when you're in such a stressful situation. I'm sorry you can't have a kitty!

Take care and keep us posted on how you're doing!

Big !!

Unread 02-27-2003, 04:05 AM
Frustrated & Sad

s Sirensong

This time of waiting and just not knowing for certain will be the hardest part for you!!! There are moments when it can be sheer agony. But somehow we get through it. (I had to wait seven weeks from the time of my ultrasound showing masses until surgery.)
One day at a time. Prepare yourself for the surgery and recovery.
Try not to stress about too much about events after surgery.
If you find out it is cancer and you need further treatment, there are quite a few of us here that will become your dearest buddies. Giving advice, tips, hugs and holding your hand all through the process.
You are in my thoughts and prayers.

s karenann
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Unread 02-27-2003, 05:58 AM
Frustrated & Sad

Hugs to you...concentrate on you and not what others are going to think...allow yourself some moments of'll get through this and be well once again...
My thoughts are with you...I wish I had more to offer you...I'll let the other ladies handle that- they are wiser than I...
Best wishes!
Unread 02-27-2003, 07:09 AM
Frustrated & Sad

I would not worry about the CA-125. Yes it is elevated, but it can be elevated from any kind of abdominal inflamation - and with the appendix that may be the case.

The loss of blood with a hyst is usually not terrible, but if the directed donation makes you feel better go for it!

This is a terribly emotional time - the only comfort I can give is that living through it is easier than the anticipation.

Come back and visit as often as you need. This group is great

Unread 02-27-2003, 08:41 AM
Agreeing with the Others

The anticipation time is the hardest. You are wise to have a gyn/onc doing this. They're the experts. If you need help afterward if you need chemo, just ask--been there, gone through that--several of us have. It's scary to think of--but do-able if needed. Big :hug" and I've put you on my er list.
Unread 02-27-2003, 10:20 AM
Frustrated & Sad

You guys are all so great. Thank you SO MUCH for your, kind supportive notes (which made me cry as I read them). I am so grateful to know that you're all out there. I have many wonderful friends here and scattered throughout California, but talking to people who are going through the same thing just fills a different need. So thank you.

Karenann, I cannot believe you had to wait seven weeks. That must have been agony.

Ellen, thank you for adding me to your prayer list. I greatly appreciate it. I went to the prayer board and thought about posting something, but after reading through all the posts, I felt selfish and decided against it. Maybe my role is just to pray for others. I have lots of people praying for me already.

Dorrie, I'm not personally worried about the blood at all. My friend just wanted to do it and he kept asking and asking -- probably because he doesn't know how else to help.

Amy, thanks for "freeing" me to just not want to talk to my sister that much right now. Her dramatic mood swings are just hard on me, and I want to minimize stress right now. I will try to be a good sister but will put myself first.

And Ericka, thanks for just being there and caring enough to respond.

Hugs to all of you!
Unread 02-27-2003, 10:24 AM
Tummy Pillow?

Oh. And sorry to post again, but . . . I keep reading about tummy pillows but haven't really been able to find anything that says *why* they're so important. Can someone direct me to something that explains why I should get one? I couldn't even find a definition in the shopping mall, but it sounds like everyone gets them.
Unread 02-27-2003, 10:55 AM
Frustrated & Sad

Any small pillow works as a tummy pillow - even a cuddly stuffed animal.

In the early hours and days after your hyst, holding something close to your belly will make standing, bending, walking and coughing easier. It is hard to describe but if you aren't holding something close it feels like your insides are gonna drop (they won't). I used a regular bed pillow, others like a small special pillow. Hystersisters sells a totebag you can stuff like a pillow.

Now for me, bringing my very own bed pillows and old flannel pillow cases was the big one.

Unread 02-27-2003, 12:05 PM
Frustrated & Sad

Be strong Sirensong and look after YOU! I too will undergo surgery on Wednesday 5th Mar and will be thinking of you on the other side of the world. You are not alone. Please feel free to email me. We are the same age (37) I believe and while I am blessed to have a wonderful hubby and 7 year old son, I can understand your solitude. I know when I found out that I was going to have to have my hysterectomy it was really overwhelming but I soon learnt to reduce my stresses by simplifying my life. For some this is a possibility and others it isn't I know. I have known about my possible ESS for about 6 weeks now and have only just recently told my Mum and Dad because I was not sure of their reaction and while I love them to pieces I just knew that if they fussed too much it was just going to worry me more. All I can say at this point is be informed, I found the more informed I was the less scared I was even though the information you are getting can be really scary. Knowledge is power. Know what the possibilities are for you so that You can be the one in control by making the decisions right for YOU.

Big big hugs from the other side of the world.



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