Not the happiest camper...

kikz
kikz Member Posts: 1,345 Member
My count doubled from 23 to 46 so now I will be scheduled for a ct scan. The onc told me I would have a petscan but the NP said the ct is better(?). I took it well; I wasn't really surprised. I only got emotional when I told her I hate the thought of putting family and friends "through it" again.

The onc said she's known cases where the CA 125 is 100 and there is nothing. I hope I am that lucky. But luck is not something I usually have. If I pick out lotto numbers you can be sure none will come up; I don't win pools or bets. So how the hell did I get lucky enough to win the ovarian cancer jackpot?

I thought I would totally fall apart but I came home, told my mom and we went shopping for the groceries for her 88th birthday party I am giving her tomorrow. She told my cousin I could cancel it but I don't want to curl in a ball. That has never been my style and I don't intend to start now.

I am still holding out hope. It ain't over until this chubby lady sings and I refuse even if I have to put duct tape over my mouth.

Thank God I have this place to come to. You ladies are my rock. Otherwise I would have to hold all this in. I don't want to be a dark cloud in people's lives. That is what bothers me the most.

Karen

Comments

  • LaurelWillow
    LaurelWillow Member Posts: 13
    That's **** news
    While it may be true that it is "nothing" it can still be terrifying to know that your numbers are rising. Always post here. Everyone knows you are not Ms. Doom and Gloom but a normal person faced with dreadful and incomplete news.

    So glad that your mom is turning 88 and is paving the way. Mine is 77 today and focusing on her helps.

    Sending you best wishes,

    Laurel
  • lovesanimals
    lovesanimals Member Posts: 1,366 Member

    That's **** news
    While it may be true that it is "nothing" it can still be terrifying to know that your numbers are rising. Always post here. Everyone knows you are not Ms. Doom and Gloom but a normal person faced with dreadful and incomplete news.

    So glad that your mom is turning 88 and is paving the way. Mine is 77 today and focusing on her helps.

    Sending you best wishes,

    Laurel

    I'm still holding out hope for you too
    and I'm glad you didn't cancel your mom's birthday celebration. The waiting and not knowing is going to be hard enough as it is. Keep us posted, of course.

    Hugs,
    Kelly
  • JoanC
    JoanC Member Posts: 231
    Darn It!
    Karen,
    WOW, it is hard news but it could be not as bad as it seems. Glad you are keeping busy with your Mom's birthday party. The waiting is the really hard part. When is your CT scan? I know there are a lot of things that can make your CA125 rise...I will keep the good thoughts going your way.
    (((HUGS)) and prayers
  • Gottalovelife
    Gottalovelife Member Posts: 45
    I hate those darn numbers!!!!!!!!!
    Mine started going up after 4th chemo treatment back in 8/11. Has been going up ever since went from 18-25-32-57-32-34-37-47.4-47.2 & just had it done again last week Drs. Office called & said it was 83 & wanted me to get cat scan. This all happened yesterday, so it was a day from he**, heck I havent gotten my eyebrows back yet from chemo and all these women talk about curly chemo hair, not mine, baby fine and very thin so I still have to wear darn wig when I go out. But went for ct scan at 4 yesterday and thank goodness radiologist was on hand & he showed me the pictures from time before which was 2 months ago because of my numbers going from the 30's-40's--and everything was still clean. Praise God! So haven't talked to Dr yet to see what next step is hopefully just to get another CA125 check again in a couple weeks and pray they go back down. I think it is just so horrible that these numbers can play such havoc on our life, I lost it yesterday when the nurse called me & told me it was 83. Just didn't expect it, so you did good to carry on with life, mine came to a stand still yesterday. Like you luck does not seem to be on my side, but lucky enough to have gotten this horrible disease. Just wish they could find out what is causing the numbers to go up, need some kind of peace, can't stand the constant worry and sick of cat scans that's for sure. So good luck to you and these numbers are not always a good sign for some of us. Keeping us all in my prayers.

    Cindy
  • kikz
    kikz Member Posts: 1,345 Member

    I hate those darn numbers!!!!!!!!!
    Mine started going up after 4th chemo treatment back in 8/11. Has been going up ever since went from 18-25-32-57-32-34-37-47.4-47.2 & just had it done again last week Drs. Office called & said it was 83 & wanted me to get cat scan. This all happened yesterday, so it was a day from he**, heck I havent gotten my eyebrows back yet from chemo and all these women talk about curly chemo hair, not mine, baby fine and very thin so I still have to wear darn wig when I go out. But went for ct scan at 4 yesterday and thank goodness radiologist was on hand & he showed me the pictures from time before which was 2 months ago because of my numbers going from the 30's-40's--and everything was still clean. Praise God! So haven't talked to Dr yet to see what next step is hopefully just to get another CA125 check again in a couple weeks and pray they go back down. I think it is just so horrible that these numbers can play such havoc on our life, I lost it yesterday when the nurse called me & told me it was 83. Just didn't expect it, so you did good to carry on with life, mine came to a stand still yesterday. Like you luck does not seem to be on my side, but lucky enough to have gotten this horrible disease. Just wish they could find out what is causing the numbers to go up, need some kind of peace, can't stand the constant worry and sick of cat scans that's for sure. So good luck to you and these numbers are not always a good sign for some of us. Keeping us all in my prayers.

    Cindy

    Thanks all
    I am actually having a petscan which my onc told me I would have if my count didn't go down this time. The NP is the one who ordered the ct scan. I told her I thought I was having a petscan and she said no the ct is better. I had talked to the doctor in the waiting room shortly before and she was still talking petscan and told me she would let the NP know. I got a call from the NP late afternoon telling me she had spoken with the onc and the doctor wanted a petscan. She said you kept talking about the petscan but I didn't get it. I didn't get it either based on my conversation with the onc.

    Anyway... I asked what the test was like and she said I go in a tube and it is dark. I am claustrophobic but told her I'll do what I have to do so she prescribed ativan.

    The test is Wednesday evening. I haven't talked to my son yet. I just hate to.

    Well, I have to start working on the food for the party. I don't feel like I have a lot of energy this morning. I wish I could just kick back and watch tv mindlessly. I guess I can do that tomorrow.

    Have a good day ladies.

    Karen
  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    kikz said:

    Thanks all
    I am actually having a petscan which my onc told me I would have if my count didn't go down this time. The NP is the one who ordered the ct scan. I told her I thought I was having a petscan and she said no the ct is better. I had talked to the doctor in the waiting room shortly before and she was still talking petscan and told me she would let the NP know. I got a call from the NP late afternoon telling me she had spoken with the onc and the doctor wanted a petscan. She said you kept talking about the petscan but I didn't get it. I didn't get it either based on my conversation with the onc.

    Anyway... I asked what the test was like and she said I go in a tube and it is dark. I am claustrophobic but told her I'll do what I have to do so she prescribed ativan.

    The test is Wednesday evening. I haven't talked to my son yet. I just hate to.

    Well, I have to start working on the food for the party. I don't feel like I have a lot of energy this morning. I wish I could just kick back and watch tv mindlessly. I guess I can do that tomorrow.

    Have a good day ladies.

    Karen

    Pet/ct scan is better
    You drink some white stuff and then they start IV with radio active glucose..then you rest in cool room for one hour. Then you go to the machine and lay down with your arms over your head and in moves slowly in the tube...takes about 20 minutes. I was scared a little so I closed my eyes until it was done. The next few times I went I wore my chemo cap and pulled it down over my eyes..much better. This scan will light up any cancer cells. You will have to be on a no carb diet prior to the test. Make sure you have labs done..they need to know your creatinine for kidney function. I am praying your scans are free of cancer. Until then enjoy time with your mom and her big day. My mom is turning 90 in a few weeks..I always tell her she is lucky to live so long...don't think I will...Blessings...val
  • myfmlyrox
    myfmlyrox Member Posts: 7
    kikz said:

    Thanks all
    I am actually having a petscan which my onc told me I would have if my count didn't go down this time. The NP is the one who ordered the ct scan. I told her I thought I was having a petscan and she said no the ct is better. I had talked to the doctor in the waiting room shortly before and she was still talking petscan and told me she would let the NP know. I got a call from the NP late afternoon telling me she had spoken with the onc and the doctor wanted a petscan. She said you kept talking about the petscan but I didn't get it. I didn't get it either based on my conversation with the onc.

    Anyway... I asked what the test was like and she said I go in a tube and it is dark. I am claustrophobic but told her I'll do what I have to do so she prescribed ativan.

    The test is Wednesday evening. I haven't talked to my son yet. I just hate to.

    Well, I have to start working on the food for the party. I don't feel like I have a lot of energy this morning. I wish I could just kick back and watch tv mindlessly. I guess I can do that tomorrow.

    Have a good day ladies.

    Karen

    Never had a PET - only CT. What's the difference?
    Sorry to hear your news, Karen, but keep up the positive thoughts. Knowledge is power, and you have to just keep fighting the fight. I have only had CT scans - what is a PET scan? My numbers are in the 300s, chemo nearly every week for over a year, and I am still working and living life to the fullest as much as possible. Enjoy preparing and celebrating your mom's birthday!!! What an amazing gift, for you and for her. My mom passed away 7 days after my debulking and hysterectomy surgery 2 years ago. She was diagnosed with pancreatic cancer on March 31 and died on April 9 - she didn't have a chance. She was 70. (there are some things worse than the battle we are dealing with) I was able to be with her for her last 12 hours here on earth, and was able to tell her how much she means to me, one last time. I miss her every second of every day. But I am comforted by knowing that she knew how much I loved her. We were very close - she was my best friend. She had turned 70 the previous Sept., and I took her to Puerto Rico for a week - just the 2 of us. Very special memories indeed! Rejoice in every day, every moment that you have with your mom. Live, love and laugh, and try not to dwell on the uncertainty of this disease. Life is so short, live with no regrets. There are only so many things that are in our control, and from what I can tell, there isn't much control when you have OVCA - accept for the way we react to it and live with it. Crawl up like a ball - YES- watch TV aimlessly YES, Sob for a few minutes - YES. THEN we get up and put on our big girl panties and push through! Hugs to you AND your mom on her special day!!!! Patti
  • Pattyn
    Pattyn Member Posts: 47
    myfmlyrox said:

    Never had a PET - only CT. What's the difference?
    Sorry to hear your news, Karen, but keep up the positive thoughts. Knowledge is power, and you have to just keep fighting the fight. I have only had CT scans - what is a PET scan? My numbers are in the 300s, chemo nearly every week for over a year, and I am still working and living life to the fullest as much as possible. Enjoy preparing and celebrating your mom's birthday!!! What an amazing gift, for you and for her. My mom passed away 7 days after my debulking and hysterectomy surgery 2 years ago. She was diagnosed with pancreatic cancer on March 31 and died on April 9 - she didn't have a chance. She was 70. (there are some things worse than the battle we are dealing with) I was able to be with her for her last 12 hours here on earth, and was able to tell her how much she means to me, one last time. I miss her every second of every day. But I am comforted by knowing that she knew how much I loved her. We were very close - she was my best friend. She had turned 70 the previous Sept., and I took her to Puerto Rico for a week - just the 2 of us. Very special memories indeed! Rejoice in every day, every moment that you have with your mom. Live, love and laugh, and try not to dwell on the uncertainty of this disease. Life is so short, live with no regrets. There are only so many things that are in our control, and from what I can tell, there isn't much control when you have OVCA - accept for the way we react to it and live with it. Crawl up like a ball - YES- watch TV aimlessly YES, Sob for a few minutes - YES. THEN we get up and put on our big girl panties and push through! Hugs to you AND your mom on her special day!!!! Patti

    You are strong
    You are a strong woman and you WILL get through this. I am going to say a long and special prayer for you tonight. Hang in there......patty n.