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Feeling lost

Posts: 1914
Joined: May 2012

Feeling a bit lost and unsure.  It's been 19 months since my dx of adcc.  Many of you know it's been kind of a wild, uncharted ride I've been on.  I did a relatively dumb thing...cancelling my ENT appointment last month.  I found a pretty large lump just below the resect site of my original tumor.  Feels identical to the original.....and I freaked.  My lungs are weak, doubt I could go through anymore surgeries.  I been thinking about biopsy to be sure, and then what ?  The inner fighter in me says trials...maybe ?  Chemo, rads maybe again.  I think alot of days I've accepted things....and other days I say hell no....fight some more Kate.  I am having problems swallowing, and get really bad (what I call charlie horses) and pain on that right side. 

On a lighter note.....I've been spending alot of time with my grandkids.  I look at them all with such awe, and gladness in my heart.  I am a very blessed woman, and have been doing alot of thanking the higher power for this.  Not sure where I'll end up with all of this, but my only hope is that these doctors have learned something from me to maybe help the next person with this crappy rare dx.   Hugs sent to you all....and sorry for being so down.  Katie

Posts: 839
Joined: May 2013

is many, many ((HUGS)) to you and prayers for you.  I can't say I'd know what to do in your situation, but I do know how sweet and kind hearted you are.  You've been very nice to me and I truly appreciate it.  If you choose to fight some more...we are right here with you.  You never fight alone and you have the CSN army on your side :)  Whatever you decide, know that we're all here for you, with you and sending prayers up for you.  

Posts: 80
Joined: Apr 2013

Dear Katie,

This is a crazy, scary journey for sure with lots of unknowns. I understand why you cancelled your ENT appt. however, with that said, you cant fight what you don't know. Reschedule...  And know that we are all here for you should you need us. You are never alone -  even though it feels that way at times.  *Hugs*

CivilMatt's picture
Posts: 4303
Joined: May 2012


You are in a scary place (health wise), with decision not quite clear.  I hope when you line up all your options the positives outweigh the negatives and you are hopeful to fight again.

I’ve read some of your posts on the other forums and I think (I know) how troubled you are.  I hope there is something good just ahead for you.

Your Oregon buddy,


Hondo's picture
Posts: 6643
Joined: Apr 2009

Learn something from someone who has been there and back three times. Don’t give up, fight and fight and fight until your last breath putting yourself always in the hand of God. Is it hard yes indeed will you make it know one knows but if you don’t try only then is everything a lost. I have been through hell in the last 10 years and I fight everyday for one reason and that is to be a part of my grandchildren’s life. To me the pain is well worth it when I hold one of them in my arms. 


CherieLW's picture
Posts: 472
Joined: May 2013

This is such a sweet picture!

debbiejeanne's picture
Posts: 3095
Joined: Jan 2010

dear katie, u r allowed 2 feel lost and down sometimes!  that's 2 b expected.  i wish i could give u a big bear hug.  i'm sorry today is so rough 4 u.  i pray it gets better.  sending u lots of prayers and positive thots.  also sending u a cyber hug (  ).

God bless you,


phrannie51's picture
Posts: 4672
Joined: Mar 2012

I run a bit like Sunshine.....I understand why you canceled your appointment....but rescheduling and getting in there would be prudent....there are more ways to skin the surgery cat than putting you under.....if it even comes to that.  FIRST it would have to be deemed something to removed.....with this disease, it might not be a duck...regardless if it appears to resemble the last duck.....still doesn't make it so.

When you're feeling down.....come here.....talk about it...get it out.  This is a huge burden to carry alone.....there is no rules here that say being up and feeling bouncy is a requirement for posting.  Matt and John can always make a person giggle....Fight on, sweet lady....


Posts: 213
Joined: Sep 2012

Boy can I relate to your post, I am about a year out od dignoses, but have been fortunate enough to have one clean pet scan under my belt.  The side effects from treatment, are still giving me problems, and one that I am having the hardest time with is the mental struggle, I had just gotten married before being diagnosed, and we dissolved the marriage within this last year, had two sons go to the military, lost my job and my house, feel like I am loosing my mind. I was always so strong almost imortal, then cancer came and showed me my mortality, and I have been really screwed up since. There were a few times during treatment I believed I wouldn't make it through the night, and there were nights where I pounded on deaths door begging it to open, but it wasn't my time. I have to agree that you should reschedule your ENT appointment, it may be scar tissue, and for me knowing is always better than not knowing. I know you had a rough ride, but you were always there for anyone who needed help or advice, let us be there for you now. I too believe in God, or a higher power, and have spent a lot of time thinking about all that has transpired, I have a prayer in my heart for you......


jim and i's picture
jim and i
Posts: 1788
Joined: May 2011

Never feel that all is lost. God still performs miracles! Hugs and prayers.


Skiffin16's picture
Posts: 8286
Joined: Sep 2009

I can only offer to fight if you can and still have a quality of life you can live with...

That's a tough decision that unfortuantley only you can make or decide...

But I'm here with you, and will be for the long haul...


CherieLW's picture
Posts: 472
Joined: May 2013


You are one heck of a fighter. I cannot honestly say what is best as I have not had to endure any of this.  Watching dad go through it, I see how hard it is...I watched him fight, I'm watching him win now.  I know it is scary just knowing that you can feel a lump, but getting it checked out is probably the best thing.  Hoping that it is nothing big, but please keep us posted! You are such a strong person, you really are.  I admire anyone who has had to go through this...

Praying for you!


Posts: 1914
Joined: May 2012

Tracy                Matt             John

Sunshine          DJ                 Cheri                   Debbie

Thank you for being in my corner always....sometimes it gets overwhelming.  I'm a fighter at heart and will continue to be.  I can and will figure this out. 


You have been an inspiration to me, and seeing you in that picture only wants me to fight this demon all the more !  Yes...I hear your words, and am taking them to heart my friend !


I love the analogy you used.....I say quack, quack....alot now !  I get a couple months of freedom, and pow in the kisser I get it again.  This post sounded like a poor me thing, I didn't want that to happen.  It's not me...just the darn circumstances.


I defineately have the feelings you do.  There have been moments throughout that I wanted to say NO MORE !  But most days I muddle through, and think o.k. I made it this far.  In actuality guessing it's kind of out of my hands.  I can make the best possible decissions on tx's...if they are available.  And then the rest is up to my maker.  I did put it in his hands awhile back...as I never could handle all this entails without my faith.

You people always amaze me.....you are such caring, loving people.  And I thank God for you all each and every day !    Katie              

Posts: 839
Joined: May 2013

feel ashamed!!  Feel mad.  Feel hurt.  Feel scared.  Feel frustrated.  Feel determined to FIGHT and win.  Definitely feel loved.  Feel like you have victory. But, never feel ashamed.  You are a warrior!!  

phrannie51's picture
Posts: 4672
Joined: Mar 2012

Maybe the post sounded a little poor me to you when you reread it....I didn't pick that up.....(and gawd knows if there was, who cares....everybody deserves a little of that around here!!!).....I heard you saying what you felt....what was going thru your head....the stuff that unless it gets poured out somewhere tends to grow and become more than any human can bear....Spill your guts, girl....it's good for the soul.


fishmanpa's picture
Posts: 1216
Joined: Jan 2013


I cannot fathom what you're going through. I've been asked many times since this journey started what I would do should I be in the same situation. I really don't know! Reading your post and seeing hwt's recent post as well as other's facing bad news makes my heart sink and skip a beat, especially in light of my upcoming scan. 

I can only hope, should it be my fate, that I will handle things with the grace that you do. Please see your doctors. They can help with aleviating symptoms and making you more comfortable.

All I can do is offer my prayers and positive thoughts. 


VanessaSLO's picture
Posts: 283
Joined: Jul 2012

like others have said - I mean all of that! Don't give up, fight, fight, fight!! Look at Hondo's wonderful picture! You have your family so please, don't give up!! Look at your grandchildren and let them give you the needing strength! You were always here for all of us like a sunshine! When my Dad was going thru his treatment last year, your warm and supporting words helped me to feel protected, to feel loved and with knowledge that someone over there virtually supports me and gives me strength!!

You're one of the sweetest people I met here on this board! Please, call those doctors and DO fight some more! God will bless you, because I believe that good things happen to good people! I'll keep you in my thoughts and prayers! God bless you and your family!

hwt's picture
Posts: 2330
Joined: Jun 2012

Keep paddling with me...........

donfoo's picture
Posts: 1644
Joined: Dec 2012


Thank you for all you have done for so many of us here, always so supportive and understanding. Getting cancer is scary for us all but having it return surely is the most scary feeling of all so don't fret about your posting. We all know you have a lot of fight and will reconsider seeing the ENT and knowing what you are needing to fight; and you will fight! Prayers and thought for you, don

Posts: 269
Joined: Jun 2012

I am sure you are scared and I can see myself doing the same thing, not that it would be the right thing to do but I can see myself doing it. My grandchildren were one of my biggest inspirations to fight thru my treatment. Wanting to be here for all of their big and little moments, I don't want to miss a one. So that being said, I think I would get myself to the doctor, remember it isn't cancer until they say it is. Praying for you.

Duggie88's picture
Posts: 703
Joined: Feb 2010

I have bveen blessed with two Katies in my life, I married one and aquired one as a fellow fighter on here. I don't want to lose or see harm to either one which brings me to my request of you. Please reschedule your ENT appointment and make a POSITIVE grand appearance. In the event of bad news lets twist what you stated and hopefully they learned from others that they can apply to your situation. I vote for the hell no............and fight some for Kate. Fight for the enjoyment of seeing those grandkids grow older. I know only you can fight but your friends on here can help you laceup the gloves. We are all in your corner. I now have another request for Father Joe at Sunday dinner.

Thoughts and Prayers


patricke's picture
Posts: 498
Joined: Aug 2006

Hey Katie, I can't begin to imigine how many mixed intense feelings that you must be experiencing, given all that you have been through and now looking at what may be another shoe.  I can only urge you to hang in there and don't quit.  See the the doc and find out what is going on and what the plan will be.  I'm hoping for the best for you. 


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