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Stance to endure

katenorwood
Posts: 1731
Joined: May 2012

Hey everyone,
I was talking with others on how to proceed with issues I'm having. I'll tell you ....10 people will tell you 10 different things. Today I still am unsure of a darn thing. As I have told you guys my dx (adenoid cystic carcinoma) is not cureable, with few tx options. This is not to say people with this dx don't live full wonderful lives before reoccurrance or mets ! Holy cow, up to 20 yrs and sometimes never. I asked the H/N doc where I was at with this...and he came at me with this one. I said dude I've lived with this in my body for at least 15 yrs. that I can track. My primaries didn't know about ACC. And then he said o.k. you are 11 months into this dx since surgery. I guess I'm just one of the few that lands in the land of oz, and as quite a few of my doctors have said in muddied waters. I see the battles that many on this board are enduring and winning....and I will stay in the fight. But I'll admit I'm getting a little worn down and frustrated. I received more papers to fill out for my upcoming appointment on the 27th. (Thorasic surgeon) And all I could see is mets...mets...mets. Seriously on their referrals to the new guy on the block. I will celebrate today with my children and grandchildren....and of coarse my wonderful husband. It is soooo hard to stay upbeat and smiling. I'm tired of that feeling of defeat....and to accept what is happening to my body. It hit out of the blue and blind sided me. (as I'm sure each and everyone of us has felt) I'm not asking for sympathy-good lord NO ! Just someone tell me what I'm feeling is normal, and it's o.k. to be pissed off. This is from the lady who is usually upbeat and ready to take on the world. HA ! Katie

hwt's picture
hwt
Posts: 1655
Joined: Jun 2012

I know it is difficult and the emotions run high. Please take this Thanksgiving day to put the worries aside and enjoy your blessings and family. Today is a gift. You can worry tomorrow if you chose too.

ratface's picture
ratface
Posts: 1209
Joined: Aug 2009

and pissed off are both good places to begin and exactly where you need to be. From there it's all uncharted waters for anyone who hasn't sailed here before, so the list gets narrow for sure. You can ask ten people what to do but unless they have been where you are, well you know the answer to that. Put it aside for today, it's too much to wrap your mind around all at once. You don't have to be thankful for any damn thing today, you just have to be.

VivianLee5689's picture
VivianLee5689
Posts: 541
Joined: Aug 2012

It is Thanksgiving and a time to be thankful, but I am having a hard time with that today. Just finding out two days ago that David has either Multiple Myeloma or Plasma Cell Leukemia has broken my heart. Wasn't it bad enough to go through the head and neck cancer? I could sit here all day and write why this is so unfair and that I don't know where to go, because I don't. In the end we still have today, we still have each other. I still have David, even if he doesn't talk much, doesn't eat and looks totally miserable. He is still alive. I am going to hang on to that for today. I am so sorry for the hand you have been dealt. At this point all we can do is go on living and fight like h***. Cancer really is on my naughty list this year.

luvofmylif
Posts: 344
Joined: Sep 2012

So sorry for all that you go though and you have every right to feel any d---- emotion you want to feel. I know how hard it is just seeing my dear husband go through this. Fear permeates me at times. So, I can only imagine how much more our loved ones with cancer deal with.

As we all know we only have the here and now...the today , so I am mentally just trying to be thankful for this. I won't sit here though, and tell you how you should be. But, I hope you keep fighting and I hope you enjoy today with your loved ones. Thats one thing I have learned more then ever. The joy in life comes from people , not from things.

You should vent on this site anytime you need to , if it helps even in some small way for you to continue on your course. We are all bonded together through this one word called "cancer".

Joan

ditto1
Posts: 628
Joined: Mar 2012

to feel enough is enough, or scream or what ever no one on this site would not understand. I know we all try to raise others up and thats a good thing but we all also know how hard this journey is. So the one thing I learned over the last 7 months its been like a roller coaster, up and down. I posted from both mind sets up and down. So you try to enjoy today, and take the one day at a time approach (sometimes I fail to do it myself). So Happy Thanksgiving to you Dear Katie and your family.

phrannie51's picture
phrannie51
Posts: 3411
Joined: Mar 2012

I say that and then giggle cuz I'm sure there are some people in the world who'd rather be pronounced normal by just about anybody else than me...LOL. Today is today, and this is how you feel...you're in "muddied waters"...that means you can't get any vision of what is before you...I've also picked up over the last few months, that you're not the kind of person who accepts defeat easily. So yeah, being pissed off seems completely within the realm of normal to me. I think it'd be kind of abnormal to feel upbeat and smiling all the time going thru what you're going thru.

I do know this, tho...it's how you feel today...tomorrow will come and your perspective will shift, and how you feel will shift with it. You are a natural born fighter, Katie...I know tomorrow will be a better day.

p

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

It is hard to stay upbeat all of the time when you really are worn down. Just accept the fact that you have the right to be depressed but WE do not give you the right to quit. Hang in there and happy Thanksgiving.

Denny

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

I totally understand you and your feelings. My ability is to feel with people - maybe even too much. It seems to me sometimes that I want so badly for everyone to be ok that it really makes me depressed. When my Dad was diagnosed our worlds colapsed. You ask yourself why, especially because he's been thru so much already in the past (cat with nine lives as I like to say). And then I met all of you here and I realized how wonderful people you all are with your own lives, families, happiness, joy and sorrow, problems. And then I wish also for all of you to win this cancer and I "jump around" when I read somebody is NED.
So I also feel you Katie, especially with this dx of yours ... You're always so compassionate, helpful and warm to others. And it is completely normal that you just can't always be cheerful and happy and that you're worn out. I think that when those days come when we feel really down and depressed we actually "reset" ourselves and after that we feel a lot better. We all need those days to just be ourselves, to show all our sorrow and worries. To show that we can't be strong all the time.
And what is most important: If we do everything we can and there's really not much we can impact on, then just leave it to destiny. It will be as it is suppose to be.
Few months ago we had a big baloon accident in our country. 30 people on board. Baloon fell down and among them 4 people died (3 of them were a family!) when in the mean time few people got out without a scratch!! All in the same baloon with completely different destiny. So just keep in mind that we can't have everything under control - sometimes we just have to BE and go with the flow! It will be ok in the end!
You're in my thoughts and prayers!

CivilMatt's picture
CivilMatt
Posts: 2640
Joined: May 2012

Katie,

What you are feeling is normal and it is o.k. to be pissed off (excuse my use of the “p” word, you asked me too). Man if I could, I would walk through your door, pat you on the knee and tell you it will be alright girl. A little bit of mad Katie, a few this sucks and then a helping hand to get back on your horse. I at least have to try and help you, which is what Katie would do for me. I do not pretend to have a crystal ball for any of us, but I do know that “dark Matt” is scarier and more difficult to live with then “hopeful Matt”. If it is alright with you, after “dark Katie kicks a little butt, please put her away and bring back “hopeful Katie”.

Best,

Matt

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Definately OK to be pissed off. In fact, I think you're better off if you're pissed from time to time. I think PO'd is one of the ingredients in a can of WhupAss. Luckily for me, I can only imagine how it'd feel to see "mets" multiple times on a report - hate that you don't have to imagine.

Hope you enjoyed your Turkey Day.

katenorwood
Posts: 1731
Joined: May 2012

Thank you ladies and gents !
I ramble on....yeah still po'd, but after being with my grandchildren I feel refreshed and ready to kick butt ! We listened to the victrola...and I laughed so hard when the younger children looked and looked for the plug in. I taught them each how to use the crank...and showed them how to put the needle down on the records. I have tons of Christmas albums from the dirty 30's...and even the 14 month old was dancing and singing ! I had the past, present and future with me all in the same room. I got teary eyed, and raised my voice in joy of the here and now. You all have lifted me up, and I felt your strenghth. Thank you ! Katie

Grandmax4's picture
Grandmax4
Posts: 544
Joined: Dec 2011

so wonderful, I love kids way more than adults..my Grandbabies can cheer me up , make me laugh, and p me off....praying for you, and love your spirit..it's ok to me angry, just don't let it spoil what is!!

luv4lacrosse's picture
luv4lacrosse
Posts: 1345
Joined: Jul 2010

Hang in there, you have way too much to live for. Go see a pro about your feelings and get on some meds to help you cope.

Mets / recurrabce sucks, but it is the hand we are dealt with.

Prayers and positive mojo from my family to yours.

Mike

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