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Good news, bad news, good news, bad news AHHHHHHHHHHHHHHH

sleepy524's picture
sleepy524
Posts: 20
Joined: Oct 2010

So we have decided to up our wedding. Cancer has taught us that we will have limited time together. It is not a question of if it is a question of when per his doctors. They feel they will get him into remission in time but that with his conditions he will get it again and again until the treatments stop working. My reply to the doctor, sounds like a good idea to start finding new treatments then. My last post the doctor said tumors were all but gone. Just a few weeks later they tell us his CEA went from a 25 to a 66??? Explained not to panic rads could cause the increase. Panic? WTH is panic? Ohhh you mean what I am doing inside that everyone keeps telling me to stop doing? Then they tell us the PET scan that showed no tumors was mistakenly done w/out dye and with colorectal cancer it should ALWAYS be done with dye so we should not count on those results. He says this time around is better then his first fight, side effects less devastating. But I have seen him unable to stand on his own, needing help to sit up, crashing for 16 hours.

In the meantime my heart is aching, is he better, it is so hard to tell. The doctors have bascially told us in a sense he is terminal but they wont put a life expectancy on it. He promises he will stay with me until he is 99. In the mean time I cant seem to take care of myself. Taking care of him, my three kids, his two in and out for visits, working I leave the house at 7 and get home at 7. I have had headaches for six weeks straight, the pain in my body from my fibromyalgia hurts so bad I want to cry. I would like to confront cancer and physically beat it to death. Hit it so hard over and over for every day it has been in our lives, for taking my friend's loved ones, I wish I could physically beat it down. I would give anything to save him from this, to take away the feeling that even WHEN we win this fight we will constantly be waiting for the next.

Carrie King's picture
Carrie King
Posts: 48
Joined: Sep 2010

Trying so hard to think of something comforting to say. However as I was told, this is the "new normal". However much I hate that and refuse to believe it.

My husband has told me to enjoy each moment and that worrying about him isn't going to change whatever is/is not going to happen.

Some phrases that I am trying to remember are:

No regrets.
Enjoy each moment.
And one my husband has said and gets me right in the heart is -- love me while I am still here.

I am trying so hard not to make all our time together cancer related even though it is constantly on my mind.

I read last week 90 Minutes in Heaven. I don't know your religious beliefs however this made my heart more at peace for when I do lose a loved one.

Please try to take care of yourself for him and the kids.

3Mana
Posts: 829
Joined: Aug 2010

Sleepy,
Only God know how long your hubby will be here. I feel sorry for the roller coaster that you've been on. It's hard to get your hope up one day and have them knocked down the next.
It's just a year ago that my hubby got his diagnosis. We were shocked cause it started out just as a back ache and we never expected to hear the "C" word. And I never thought he would be gone 2 months later.
Be strong for your kids & be sure and take care of yourself. I know stress is not good for Lupus. Cancer sucks and it's so hard to watch someone you love go through the suffering.
I'll say a prayer for him! "Carole"

Ron773
Posts: 2
Joined: Jan 2011

I find as caregivers, we are very hard on ourselves. There are so many demands on our time and emotions it can be difficult to see straight. No doubt you have a lot going on, but I'm sure you're handling it amazingly well! Like someone else said about "the new normal", it can be a real challenge to learn to live with getting jerked around by cancer. But unfortunately, we can't control this insidious disease, only how we handle it.

I hope you have someone in your life (friend, sibling, parent, American Cancer Society Volunteer) you can rely on to help ease the burden so you can take care of yourself.

Wishing you all the best.
Ron

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

Hey Girl!
Thanks for the update. Upping your wedding is a great idea. Focus on something positive for a change. You know that you both have to live for the moment. Cherish each and every minute of the day together. Remission is good. Go with it for as long as you can. You have to ask for some help from someone, somewhere! You can not continue doing all of this on your own, you are the one who is going to be crashing! I think your screen name should be changed to sleepy24/7!!! Hang in there my friends, you are both doing the best you can. hugs to you both.
Tina in Va

skipper85's picture
skipper85
Posts: 231
Joined: Sep 2010

It's a great idea to up your wedding date. Doctors can't predict anything. Only God knows what's really going to happen since he's the one that decides. I know you're a great caregiver but you need to take some time to care for yourself. This stress is not good for the fibromyalgia. I hope you can get it under control soon and have less pain.

((HUGS & PRAYERS))

Skipper

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