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I hate this disease

froggy1
Posts: 208
Joined: Nov 2008

I am having platelet problems with gemzar and was researching old posts. I have been on the board for a while and came across so many posts from those who didn't make it. I found myself crying. These ladies were the best of the best and so helpful to all of us.
It distresses me that there are so many new members and so few "old" members. I can only hope they have gotten so much better that they left the board.
Kisses to heaven for Sandra, Linda D., Bonnie R. Terry, and all the others that have been here...
Luv, Ginny

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

Ginny

I noticed that no matter how positive I intend to be, it is still so easy to let my mind take me into scary places. So what helps me is to imagine something to believe that makes me feel better--whether or not it is true (as long as it isn't complete denial about my situation).

Likewise, when a stranger is rude to me, I just think "boy are they having a bad day--maybe they just got some bad news." I am like Voltaire's character Candide which leaves me open to be ridiculed by "the realists" but it works for me.

I have to live for today and plan for the future but not dwell on the infinite possible outcomes of my life. Believe me, I have a GREAT imagination and know way too much--hahahah!

The way I see it is that because I drive around seeing my various doctors every week, I am probably more at risk to die in a car accident than from "The Situation."

Unless you are sure that someone is no longer a survivor, I think it is great to think that they have recovered and gotten on with their life. I am planning to be one of those people. I can understand why someone would leave this discussion board because reading some of these postings can stir up painful memories.

I admire the survivors who keep in touch on this discussion board and offer support to the rest of us. I especially admire the survivors who are still in treatment and manage to maintain a good outlook much of the time despite whatever their doctors are saying or blood tests/scans are showing.

The way I see it, you ain't dead til you stop breathing and none of us are getting off the planet alive anyway.

Carolen

nancy591's picture
nancy591
Posts: 1059
Joined: Sep 2009

Unfortunately those women froggy mentioned are deceased.

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

Sure, Nancy, I understood that. I was directing my comments to the sentence above the departeds' names:

"It distresses me that there are so many new members and so few "old" members. I can only hope they have gotten so much better that they left the board."

take care,

Carolen

kayandok
Posts: 1223
Joined: Jun 2008

sorry to hear that you are having platelet problems. I had gemzar too, but because I had my speen removed, my platelets are always high, instead of low.
I hope they can bounce back soon. Is the gemzar working?
hgus,
kathleen

froggy1
Posts: 208
Joined: Nov 2008

Funny,
I thought my spleen was gone, too! 'Will have to check on that!
I have only had one round of gemzar, but it did take my count down from 22 to 18, after having four rounds of doxil not work at all. My CA125 is not a good indicator. What is "normal" for some, means cancer for me. My baseline was set at 5...:( When it was 16, there were four spots that lit up on the PET.....not small ones, either! 'Having "emergency" labs drawn at the hospital on Sunday to check the platelet levels.
Thanks for asking, Ginny

msfanciful
Posts: 580
Joined: Nov 2009

Hi Ginny,

I share your same sentiments. I've taken a break from the boards because of the very reasons that we've lost some beautiful angels as you've listed.

They truly were awesome ladies who touched each and every one of us in the most meaningful ways. I must admit, I too have tried to move on to other endeavors and get back my life while I have the opportunity to do so. :-)

We are blessed Ginny and I know you are tired, but don't give in; is the gemzar beginning to show some improvements?

Stay strong and I'm hoping for the best for you.

Love,

Sharon

poopergirl14052's picture
poopergirl14052
Posts: 1159
Joined: Nov 2010

Ginny, I know exactly how you feel. It is frustrating at times and down right scarey. I also had my spleen removed and I continue to get carbo/Taxol. Hope your platlets level are better and you can continue tx....val

kikz's picture
kikz
Posts: 1270
Joined: Jun 2010

When I first found this board it felt like someone had thrown me a life preserver. You are kindred spirits. It helped so much to share my feelings of fear, despair and lonliness because I felt no one really knew what I was going through. As I felt better it was also great to share the good knews. But there were also times I cried after reading about the loss of a great lady and couldn't come back to the board for awhile. I am always drawn back however because of the initial feelings of communicating with people who really share my situation.

Thank you to all of you.
Karen

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