Update from Carlene........reply feature not working?

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Hissy_Fitz
Hissy_Fitz Member Posts: 1,834
edited March 2014 in Ovarian Cancer #1
I posted a reply ( a LONG one) to Michelle's post days ago, but now I notice it's not there!

I will try and recap more briefly, as I am just about done in for the day.

I spent 16 days in the hospital and was released on Oct 12th. I was scheduled for surgery on Sept 29th but had to be admitted on the 26th thru the ER, due to a bowel obstruction.

My CA125 was 4,000 when they did my pre-surgery labs. I was staged at 3C and they removed my ovaries, tubes, 8-10 inches of intestine and scrapped my omentum. My recovery seemed to be going according to plan, but then everything went to hell in a handbasket pretty quickly. After my NG tube was removed, I started vomiting bile and it had to be reinserted. There is a reason they wait until you are under before they put those things down your nose. They installed my port so I could receive "food" thru it. I got a huge bag of ugly white stuff every 24 hours, as well as 2 pints of blood. YUM!

The first time my port was accessed, it was evidently not done properly and fluid started backing up into my breast. I looked like I had one breast implant. So they sent me for a die test and fortunately, the port itself was in good shape.

The last 3 days or so in the hospital were all about treating the nausea and vomiting. They tried everything and just couldn't get on top of it. But I finally got to come home.

Yesterday was my first chemo treatment. I had a reaction and they stopped the infusion for about 45 minutes, administered oxygen and stuff thru the IV, then started it up at a slower rate. In 10 days I go back for labs and will get a new CA125 results then.

I had my hair cut short and ordered a wig. I am fortunate that my insurance will pay $350 toward it, so I got one made of human hair.

And to make everything even more perfect, my incision has not healed properly, so my doctor opened part of it back up and I have to have home health care nurses come twice a day and pack it.

Nutrition is a real issue. I cannot eat much and have lost over 30 pounds. I am trying to eat well, but still add calories - something I never thought I would find myself doing.

I thank all of you for your concern and kind thoughts. You ladies are my inspiration.

Carlene

Comments

  • saundra
    saundra Member Posts: 1,370 Member
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    Dear Carlene
    We are certainly glad to read your post and hear from you. Sounds like you had just about everything to go wrong in the hospital and I am sorry that had to happen to you. I gained the weight back pretty rapidly. Be sure to take your antinausea meds as soon as you get home from the chemo infusions. If you get Taxol/Carboplatin like the rest of us, you will have to deal with constipation problems so be sure and ask what to take for your shorter bowel. I had to start stool softeners two days before the chemo and keep on afterwards. The first couple of chemos caused lots of leg bone pain and I used pain pills for that but they do cause constipation. I take L-lysine to prevent mouth sores and have not had one! I take L-glutamine and Vitamin B-6 to help with the numb feet and hands and those have been kept at a minimum. I treated myself to ice cream everyday to help gain some weight. For some reason highly seasoned food was the most tasty for me and didn't make me sick. I had little nausea with all of the chemo I have had. I did eat smaller and more frequent meals as my stomach had shrunken during the hospital stay. Glad to have yu back. (((Hugs and Prayers for your recovery)) Saundra
  • kayandok
    kayandok Member Posts: 1,202 Member
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    Dear Carlene,
    I am so sorry that you had to go through all that. I take it you had an infection in the incision? I also had that with my last surgery in January and was not fun. It does heal, but you have to be faithful to do the packing. I always have nausea post surgery from all the drugs, but once first line chemo (carbo/taxol) started I didn't have any. Like Saundra, I had the bone/muscle pain on day 4 though 6 or so. That does lift. I took ibiprofin, but it didn't seem to help much. As soon as you start eating, you will gain the weight back. I have lost 30 pounds or so a couple times now. I always marvel at how it comes back, although I would have preferred that some wouldn't :) I did notice that the energy comes back too, with the weight.
    Take a deep breath and let the chemo do it's thing.
    Warm hugs,
    kathleen:)
  • monsta927
    monsta927 Member Posts: 20
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    Hi
    I am so glad to hear from you. Everyday I tell my husband 'she's not back yet'...boy now I can see why!
    I am so sorry for all that you have been through, I can't even imagine.
    I have thought of you and prayed everyday, and will continue to do so.
    Please keep us posted as much as you can.

    Lot's of love and prayers!
    Michelle
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
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    monsta927 said:

    Hi
    I am so glad to hear from you. Everyday I tell my husband 'she's not back yet'...boy now I can see why!
    I am so sorry for all that you have been through, I can't even imagine.
    I have thought of you and prayed everyday, and will continue to do so.
    Please keep us posted as much as you can.

    Lot's of love and prayers!
    Michelle

    Michelle, you are a sweetheart
    I very much appreciate the prayers from all of you wonderful ladies. I just keep telling God that if he is trying to test my faith, it's a waste of time. I have unwavering faith that either way, this ordeal will end in a miracle - either the miracle of healing or the miracle of life after death.

    The home health care nurses say my incision is clean and looking good. It was never infected; a portion of it just did not heal from the inside out, but tried instead to heal from the outside inward.

    My side effects are diminishing, I hope. Day one was nausea and fatigue; day two was muscle and joint pain (and more fatigue); day three was one tiny mouth ulcer (seems to be healing), but I still tire VERY easily.

    Yesterday I ate an orange wedge with my lunch. I had no idea it would taste so good. I ate five more.

    I saw my wig yesterday and go back Wednesday for the final styling and fit. I get my first set of lab results on Thursday and am anxious to see what the CA125 is. My doctor says don't take those numbers too seriously, as they are not static from one person to the next. Some patients have levels that shoot up like a bottle rocket, only to come down more quickly and to a lower level than someone who started with a much lower "count".

    Carlene
  • LPack
    LPack Member Posts: 645
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    Michelle, you are a sweetheart
    I very much appreciate the prayers from all of you wonderful ladies. I just keep telling God that if he is trying to test my faith, it's a waste of time. I have unwavering faith that either way, this ordeal will end in a miracle - either the miracle of healing or the miracle of life after death.

    The home health care nurses say my incision is clean and looking good. It was never infected; a portion of it just did not heal from the inside out, but tried instead to heal from the outside inward.

    My side effects are diminishing, I hope. Day one was nausea and fatigue; day two was muscle and joint pain (and more fatigue); day three was one tiny mouth ulcer (seems to be healing), but I still tire VERY easily.

    Yesterday I ate an orange wedge with my lunch. I had no idea it would taste so good. I ate five more.

    I saw my wig yesterday and go back Wednesday for the final styling and fit. I get my first set of lab results on Thursday and am anxious to see what the CA125 is. My doctor says don't take those numbers too seriously, as they are not static from one person to the next. Some patients have levels that shoot up like a bottle rocket, only to come down more quickly and to a lower level than someone who started with a much lower "count".

    Carlene

    YES!
    Carlene,

    Your first paragraph says it all!! I have told satan he is wasting his time like he did with Job!!

    Sounds like you are doing good...............keep us posted!!

    In His Grip,
    Libby ☺