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Roller coaster again

eibod
Posts: 160
Joined: Mar 2011

Thought we were in for a rest, but husbands scans show more tumors in the liver, lymph nodes and rectum. No surgery possible, so back on the chemo, avastin and nulasta(?). Radiation for three weeks as well for pain. Dr said this was the last option, Erbitux
wasn't working anymore, and we will have to see if the other will work. We were very surprised since last scan was taken in July and looked like improvement, didn't show lymph node involvement or the new liver spots. Question for every/anybody: he will go for hours and hardly talk at all, says he does not want to talk. Then out of the blue, he will turn so chatty you can't believe he is the same person.(although even then he will not talk about his condition) Is this a coping method? am not sure how to respond, it drives you nuts!! These last 2 years have been full of ups and downs, as I am sure it always is with anyone with this illness. Someone should write a book on how you are suppose to feel and act. I try to act normal and positive, just scream when I am by myself. I am not a pillow fluffer, but I am scared and do not want him to know that. Thanks for listening.....Brenda

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

and share it with your husband's Oncologist.

There are a couple of HER2 drugs, and he might be willing to try one of them off-label to see if it gives the Erbitux a needed kick in the behind.

Certainly worth a try.

eibod
Posts: 160
Joined: Mar 2011

Thanks, I went to the site and read the article. I will indeed mention it to the dr.
Am glad you guys keep up with these, Thanks, Brenda

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

For me, (I won't even try to speak for your husband's thoughts) but, I went through very quiet periods, where I was trying to think of all I needed to do, to get done in case the worst happened, checking over my mental check list, did I say I love you, did I tell you where my will was, I can't believe this is the way my life is turning, what is my family going to do without me, sadness at the thought of leaving everyone and thing I love, cancer sucks, is this a damn dream I'm never going to wake from, will this chemo work, for how long...All those things and many more would be twirling in my mind, my answers to my own questions as well, you just get so lost in thought you forget about the world actually revolving around you and those around you, and those were my quiet times.
Then at other times I wanted to talk to chat up those around me in order to feel alive, didn't matter what I talked about, sometimes something from growing up, to the guy wearing a dress walking down the sidewalk, just to let everyone know and MYSELF know that Hey I'm still here!!!
It's a world (the cancer one)that one hopes was a dream and you get to wake up, and everything's right side up again, and sometimes we get lost trying to sort it out and become quiet.
Hang in there, and by golly find yourself a quiet moment where no one is at home and just go ahead and scream your heart out, and you can't be positive every moment every day, you're allowed to speak your feelings out loud to him, and hold him and be held and be sad for a moment or two, THEN you have to get up smile and start being positive again.
My heart goes out to you and yours,
Winter Marie
PS: It used to drive me nuts when my family were all positive all the time, made me think I was the only one scared out of my gourd. Maybe, just maybe he needs to know he isn't the only one feeling scared.

eibod
Posts: 160
Joined: Mar 2011

Marie, thanks for your comments. All those things are probably going on in his mind when
he gets really quiet and thoughtful. And I know he is scared, as I am. Maybe you are
right, maybe I should not be so positive all the time, but I don't want him to give up
hope. I find it easier to be looking for the best, afraid if I stop being positive I will
loose what little strength I have left. Than I would not be any help to him. Brenda

marqimark's picture
marqimark
Posts: 242
Joined: Jun 2011

Sorry to hear about your husband's set back. The no surgery is distressing.

I wasn't stage four like your husband, but I remember that I was just sick and weak and my mind wasn't what it should have been. Couldn't eat coundn't read couldn't spend quality time with my thirteen year old (see picture). Chemo really knocks people out.

My wife moved into the livingroom and slept in the easy chair for three months. I cannot image how she would cope if I had been stage four like your husband.

You need a support group of your peers. Maybe your husbands clinic sponsers a group for families of cancer patients. You shouldn't have to try to be strong all on your own and your husband does need your strenght.

mark

eibod
Posts: 160
Joined: Mar 2011

Mark, Appreciate your thoughts. You are right about the support group, guess I have sort of turned to this site as a support group. It has sure been a lot of help to me. I may
not comment on it a lot, but I read the posts. There is so much strength from you
guys on here,it is a blessing to everyone. Thanks, Brenda

chrissy83's picture
chrissy83
Posts: 17
Joined: Oct 2010

This is exactly how i felt and still feel.I have just been upgraded to stage 4 im a mother of two babies under 2 im only 27 and the last thing i want to do is talk about this evil cancer.
My husband also doesn't talk about it but i think it bottles up inside of him which scares me as i know he will fall in a heap at the end of all this....For me as the patient the last thing i want to do is constantly be reminded i have cancer.I don't want to give this cancer anything more then it has already taken from me and my family....I find that people don't always respect my wishes and this makes me a very angry person... I want to live each day as if i was normal .I can't stand talking about my condition some people might think i'm in denial but sooo what if it gives me peace i beleive people should respect our wishes....I know its hard for family as they care :)

mukamom's picture
mukamom
Posts: 402
Joined: Oct 2010

I just want to run away...

eibod
Posts: 160
Joined: Mar 2011

I am sure we all want to run away at times, but you just have to deal with things later???

eibod
Posts: 160
Joined: Mar 2011

Chrissy, I am so sorry to hear about your upgrade to stage 4. It is awful at any age,
but you are so young and my heart goes out to you. I admire you for your courage, and
agree that you should live as normally as possible. Thoughts and prayers are with you.
Brenda

buckeye2
Posts: 428
Joined: Jul 2011

Brenda, My experience with dealing with this is almost exactly the same as yours. Of all the things I have done in my life, I want to get this one right. What I think right looks like is making this difficult journey as emotionally painless as I can for my husband and keep things as normal as possible. If he wants to talk, I talk. If he doesnt, I turn on that conservative talk radio station I hate but he loves to distract him. I am not always successful at my goal as sometimes I fall back into "me" mode where my needs trump everyone elses. I wish you got better news. The thought of potentially losing the love of your life is the scariest thing. Lisa

eibod
Posts: 160
Joined: Mar 2011

Thanks Lisa. We have been married a long time, it would be hard to be alone. I agree that
it is important to "get this one right". My friend keeps telling me to make sure I don't
omit doing or saying something that I would wish I had. But I don't always know what that
is. I feel like that means I am planning on the worse, when I am only hoping for miracles. I wish you the best. Brenda

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

"Someone should write a book on how you are suppose to feel and act."

Hi Brenda, your post is a timely one. I'm actually doing just that right now since I got out of my last treatment. I'm writing a book on the journey through cancer with all of the feelings, emotions, thought processes, decisions and and such that we go through.

I'm about 3/4 done with it now and hope to get it published if someone will have me.

My wife has been at this with me for 7.3 years now and can easily understand your feelings along with those of Buckeye2 (Lori) and the others. She doesn't tell me alot of what she feels and doesn't want to hear anything too much from me.

Your husband is probably going through the process of self-examination and is some serious contemplative thoughts, I'm sure.

I've been writing the book for 3 months and hope to have it finished by or before year's end and then I'll try and shop it around. I'll probably open a post when it is completed and it's for people just like you and Lori that I'm writing this book for - my way of trying to reach beyond the confines of our daily lives to try and impact another life and somehow try and make a small difference - even if for only a breath or two.

I sincerely hope you get the opportunity to read it - it's my life work now and I would like nothing better than for someone to benefit from it.

So, stay tuned to the Sundance Channel...
"Story Matters Here"

-Craig

eibod
Posts: 160
Joined: Mar 2011

Craig, have read your posts before but had no idea that you had been dealing with this for
7 years. I have been keeping a journal since his dx, as I am sure a lot of spouses do.
I don't know why, except to be able to put on paper what you feel and to feel some relief
at doing so. I would really like to read your book, it would be nice to know that I was saying what needs to be said, doing what needs to be done. I will definitely stay tuned.....

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