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worried and need to vent

damama24
Posts: 175
Joined: Nov 2009

I don't post a lot but do read the discussion boards daily. I'm just really bummed and worried as I sit here alone at my computer. I was dx in August of 09 with stage IV colon cancer with mets to liver. Started on Folfox Sept. 2 2009. After 6 rounds dr stopped oxi because of severe neuropathy and I continued on the rest of the folfox combo plus avastin until March of this year and CT scan showed progression. I knew the chemo had stopped working about a week before the scan as I had pain in my right side again just like I did before I started chemo. So I wasn't suprised at the results of the scan. I started on Iriontecan and Vectibix on April 21st.After the first round the pain in my side went away and I hoped that that meant it was working. Earlier this week I started feeling pressure in my right side again and then yesterday the pain started. I just know that means its not working and its progressing again. I've been on almost every chemo approved for colon cancer and none of them have worked for very long. I already know that my insurance will not approve any trials already tried that route. I guess I'm just thinking that the end may be near and I'm just not prepared to face it. I started this journey ready to fight and do what was needed to win. But, as chemo after chemo has failed to work my resolve is crumbling. I guess I'll pray ever so much more for a miracle. I can't talk to my family about this because they just don't understand the fear that I'm desprately trying to hide from them.I'm sorry I rambled on and whinned about my situation but I just needed to get it out. Thank You all for being there with information and hope when I needed it. I think of all of you often and rejoice in all your wins in this battle. I hope that one day I may score a win for myself. Blessings to you all.
Deb

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Re:
"I guess I'm just thinking that the end may be near and I'm just not prepared to face it. "

"I've been on almost every chemo approved for colon cancer and none of them have worked for very long."

"I can't talk to my family about this because they just don't understand the fear that I'm desprately trying to hide from them."

Well, first of all, if you don't tell anyone what you fear, they won't know
you're fearing anything. How can they understand what you aren't helping
them understand?

And having been on almost every chemo, and having it fail, doesn't matter.

You should be getting second and third opinions from other physicians
not of the same group or association, and/or out of the immediate area.
There are different chemo regimes and blends; where one may fail,
another might work. You are not going to get a full, comprehensive
diagnostic opinion from one or two local physicians.

And there are also other alternative ways to go, and other alternative
medicines to try, including one or two that haven't been "approved"
in this nation, but are used successfully elsewhere.

Fear all you want, just as we all do, but for *&^$*%# loud, don't give up.
There's no need to give up, or lose all hope..... not yet, anyhow. You just
began this journey and you may have a long, long way to go.

And as far as not being ready to "face the end"...?

You don't seriously think you will ever be, do you? Does it matter
if it's due to an incurable disease, or a gun shot, or from old age?

When we start to realize that we are not immortal, that we live and we will die,
and it's only what we do between the two ends is what really matters,
is when you will find that seeing the "end" is easier to understand......

I didn't say "easier to accept", just easier to understand.

Try to make each day better than the last, get other outside opinions,
and don't be afraid to try alternatives.

And don't be afraid of feeling afraid. Own it; it's yours.

Better days -will- come.

John

classicman's picture
classicman
Posts: 34
Joined: May 2010

I too agree its ok to be afarid I myself only had Stage 1, and had 3 surgewrys, but i was so so scared, and I have been done with treatments since Janurary 2010, Some one wrote once its ok to be scared of the uncertanty, I really wish it wasn't true, but i assume its human nature to worry, and br scared, But dont give up, Best wishes, and Hope to you.. Rick

chicoturner's picture
chicoturner
Posts: 285
Joined: Apr 2009

Hi Deb, you can be afraid, but don't let it cripple you. Keep talking to your Docs, really read what John wrote about alternative choices. Don't quit. It seems when we get really down is when we find another option or chance. Keep fighting and it trials are what you want, fight the @$%## ins. company. It is your life! Check with your med center or the ACS, they have advocate programs that might be able to help you fight. Let your family get involved, you might be surprised at what resources they can find if they know! They will want to help you! Hang in there. You are in my prayers. Jean

dorookie
Posts: 1736
Joined: Jul 2007

I sure wish I were there to give you a big hug! I know the fear you are talking about, and especially how hard it is when you feel like your all alone. My caregiver to this day still says she wishes I would have talked more about my feelings during my treatment, instead of choosing not to talk at all. I guess what I am trying to say, is maybe give some one in your family a chance and talk to them, just like writing it down I believe it would make you feel a bit better, and you might be surprised at just how much they do understand. Enough of my rambling..

Please try to stay strong and keep your faith, you are not alone, there are many people here that will support you, listen to you, and probably shed some tears with you. I am praying for you now, not only for you to be healed but for some peace of mind, so that your body can rest and heal itself too. Stress is a killer, I truly believe it was a BIG factor for me getting this.

God Bless & Sending Hugs

Beth

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

I'm sorry you're so scared right now. It's very understandable. But I do think you need to confide in someone. The group here is great, but it would also be wonderful if you really let it all go with someone in your family or a close friend. Cyber hugs are good, but one you can really feel would do you a world of good right now.

You're on my prayer list!

*hugs*
Gail

damama24
Posts: 175
Joined: Nov 2009

Thank you all for your words of encouragement. I'm trying to stay positive and believe that ther are alternatives out there for me. As for second and third opinions I know they are important but they also require money, which is in short supply now. I am already recieving treatment at a major research hospitial and would have to venture pretty far from home to see other doctors. That is just not possible given my limited resources. I know it is my life I'm talking about but I refuse to leave my family with crippling debt and no way out of poverty because of my illness. That was a decision I made long before my dx of cancer. I don't mean to make light of any of your kind words and hopefulness, but some things just are what they are. I would talk to my family about this if I could but unfortunately they don't want to hear it. They aren't indifferent to my situation just don't want to look on the darker side of this disease.It just makes them feel helpless and then affects the quality of their lives. I don't have the right to dump all my burdens on them. Sorry if I sound negative or that I'm giving up. I'm not just being real about my paticular situation. Thanks again for all you kind words. Blessings to you all. Deb

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Re:
"I know it is my life I'm talking about but I refuse to leave my family with
crippling debt and no way out of poverty because of my illness."

"I would talk to my family about this if I could but unfortunately they don't want to hear it.
They aren't indifferent to my situation just don't want to look on the darker side of this disease."

Without being able to get other, outside opinions, your may be reducing your choices
and ability to survive to be with your family.

You should be taking a member of your family to the physician's office with you with
each and every visit. You should be doing that for a number of reasons, and the
most important one, is to insure that everything the doctor is saying, is being remembered.

Too often we become filled with anxiety and worry as the doctor is talking to us, and we
miss some important dialog. With a family member with you, they will be listening as well,
and be able to recite and help you remember the dialog later.

That family member will also be able to relate to the rest of the family, your true condition,
and help them understand the seriousness of having cancer.

You should always get other opinions. Limiting yourself to other opinions is limiting
your chances for survival.

I wouldn't want to leave my wife with nothing in the bank and in debt, but many people
end up that way anyway. If she had cancer, I wouldn't care if I had to live in a cardboard box,
if spending the cash meant the possibility of saving her life, that is all that matters.

You do what you have to do to survive, and worry about the pettiness of having money
if and when that time comes.

Money ain't everything.

Life is.

Good thoughts and wishes are headed your way!

John

sheri22
Posts: 278
Joined: Jan 2009

As long as you wake up in the morning you are still here and it gives you another day to fight talk to your family and close friends about this they might be able to help you
hope you have better days soon

Sheri22

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

I'm sorry you are feeling bad.I think you should try ACS,and everyone else you can think of,and fight with your insurance company if you have to.Just don't give up,I think most of us know how you feel.Don't let yor resolve crumble,try and stay positive however hard it is.I will pray for you,you have to win the battle.

coolvdub's picture
coolvdub
Posts: 410
Joined: Aug 2009

All I can say is wow, you have been through a lot. As others have said, don't give up. I know all to well that is really hard to do some days, but as a wise man once asked me. How do you eat an Elephant? One bite at a time was the answer. I know how overwhelmed you can feel about things, but if you can just remember how to eat an Elephant when lifes curveballs come your way, you can get through this. I will be praying for you and your family.

Don

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