Sorry I haven't logged in..

Sorry haven't logged in for awhile. Been down in the dumps I guess. Things just get worse instead of better. Beginning to wonder if I can beat this. Has been one hill after another to climb to get this far. Had hoped I would have finished treatments by now. 

Did get the * power port * and got the stitches out yesterday. Doc said looked good and healing fine.

But have some *proud flesh* ? the home health nurse called it, that checked my Peg tube today. Not sure what that is.. but going to call the Doc who put it in on Monday.

I had a couple choices and I hope I made the right one.

I could either have the ENT go in and reduce the mass ( tumor), which would mean I would have to start all over with scans, MRI's, mask.( already made )...etc.

Or continue and leave it the size it is and hope for the best. I chose to leave it and start treatment sooner. I know the ENT not happy with this, but felt it was my choice.

Today I talked with the guy who is planning my treatment. Said I should know something by next week. Issue is .. where the tumor is located and size of it.. my eye sight is at risk. So he is wanting this planning to be as accurate as possible. Found out he did his schooling at MD Anderson.. worked there for a year after graduating. And he said this is one of the most difficult cases he has seen. That it is not impossible to treat but very complicated. Knowing that did help me feel better. 

I hope that while life is not always fair, everyone is doing the best they can. 

Prayers and hugs,

Kritter

Comments

  • KTeacher
    KTeacher Member Posts: 1,103
    Thank you

    Thank you for posting.  You have a plan and you are moving forward.  We can't keep second quessing ourselves.  It sounds like your tumor is large and radiation should help shrink (kill) it so it is smaller to operate on.  I am someone that lost an eye to cancer.  If it happens, you can go on.  Each day is a gift.  Stay in touch.  We will help, encourage you on.

  • wmc
    wmc Member Posts: 1,804
    Thanks for letting us know.....

    Sorry it is not going better then it is but you will get through this. Remember God will never give you more than you can handle. I was always told this by my Mother. Well he sure can push you to the edge sometimes, but never over. Just keep telling your self I can handle what ever comes, and you will. It worked for me, and I was on the edge a few times, but allways seemed to have the strength to handle it. I now breath through my neck, but I won't get many colds because of it. Oh, I can't snore either, so some good came from it. The best that came from it is, "I am still Alive" and have a second chance on life and it's great. Try to keep positive, I know some days aer hard to so just take one day at a time, only Today matters. Will keep you and your family in my prayes. Over look the negitive and celebrate the each and every positive one. You are a SURVIVOR...............

    Bill

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    kritter, i'm sorry you are

    kritter, i'm sorry you are down but i think that goes with the dx and tx.  it will get better the closer you get to being done.  i'm glad you have such a good doc and feel good about him.  try to stay positive and let us help you when you get down.  we will be here to lift you up.  we have or are going down the road you are on and we've pretty much felt/feel what you are going though.  don't be afraid to come here when you don't feel well, we'll understand.  praying for things to go smoothly and for your spirits to get lifted up.

    God bless you,

    dj

  • Thinking of you Kritter.

    Thinking of you Kritter. Sending a big hug x x xx

  • CivilMatt
    CivilMatt Member Posts: 4,721 Member
    logged in now

    Kritter,

    I would not describe you as “difficult”, but instead “unique” and as such they want to get your plan correct. 

    Your decision to hold off on surgery was logical; after all it is still an option.

    It is Halloween, try to relax, have some candy, put your mask on and have some fun.

    Best,

    Matt

    And don’t be a stranger, at least no stranger than the rest of us.

  • donfoo
    donfoo Member Posts: 1,771 Member
    one step forward

    Hi,

    I could not figure out what has happened since Oct 1, your last profile update. Generally, it is desirable to shrink the tumor before doing chemoradiation as the radiation has less of a mass to hit hard. They do this with surgery which removes it or induction chemo which shrinks the tumor. 

    Have you requested a second opinion? That could help you with your treatment plan. If you have not had your case in fromt of the tumor board and getting recommendations from one specialist, please consider getting more review. Better yet, if you can get to a major CCC like MDA or MSKCC, do that right away as these facilities have the most experience dealing with complicated and complex cases. Best of luck.

  • Duggie88
    Duggie88 Member Posts: 760 Member
    Kritter

    Yeah.................What Matt said. Hang in there, Treatment seems to drag on like Groundhog Day with Bill Murray. As far as being a stranger, trust me I am alot stranger than you.

     

    Fight on.........the victory dance is fun.

     

          Jeff

  • hwt
    hwt Member Posts: 2,328 Member
    Duggie88 said:

    Kritter

    Yeah.................What Matt said. Hang in there, Treatment seems to drag on like Groundhog Day with Bill Murray. As far as being a stranger, trust me I am alot stranger than you.

     

    Fight on.........the victory dance is fun.

     

          Jeff

    Kritter

    Your emotions are understandable. My favorite poem is Footprints in the Sand. If you are not familiar with it, you might draw strength from it. Prayers for you. You can do this! 

    Candi

  • Kritter
    Kritter Member Posts: 147
    Logged in..

    Hi everyone and thank you for the words of encouragement. From what I understand the tumor is very large, and they don't want to do removal surgery before the radio/chemo, the ENT wanted to try to reduce it, as according to the NP..with the size it is now it would be too disfiguring. Both of my eyes could possibly be affected. If I lost one I am sure I could handle that, but not sure if I lost both. 

     

    My Grammy used to tell me that God never puts more on our plate than we can handle.. well like I used to reply.. I am ready for dessert ! I have climbed a lot of hills in my life but this time.. as Marty Robbins sings. * Lord this time you gave me a mountain.*  It’s just going to be harder to climb, and I hope I can get there.

     

    Everyone on here is just so amazing to me, it’s like I read your words of encouragement and I feel better. But at the same time sad that you have been there before me, to feel the sadness and know you went through tough times as well. 

     

    I should know this week what they are going to try. and the Doc’s I have did go to MDA and train there. So I feel good that they are taking time and doing this right, I just get impatient. And at times angry that my PCP would not listen to me the last couple of years so he is no longer my Doctor. I have a new one now. 

     

    I can’t wait for the victory dance.. but I still say.. Normal is a setting on my dryer !... I have never really been the type to ask for help. I have always been the one offering help. This is new to me, I am just not sure what to do at times.

    Prayers and Hugs, Kritter

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    Kritter said:

    Logged in..

    Hi everyone and thank you for the words of encouragement. From what I understand the tumor is very large, and they don't want to do removal surgery before the radio/chemo, the ENT wanted to try to reduce it, as according to the NP..with the size it is now it would be too disfiguring. Both of my eyes could possibly be affected. If I lost one I am sure I could handle that, but not sure if I lost both. 

     

    My Grammy used to tell me that God never puts more on our plate than we can handle.. well like I used to reply.. I am ready for dessert ! I have climbed a lot of hills in my life but this time.. as Marty Robbins sings. * Lord this time you gave me a mountain.*  It’s just going to be harder to climb, and I hope I can get there.

     

    Everyone on here is just so amazing to me, it’s like I read your words of encouragement and I feel better. But at the same time sad that you have been there before me, to feel the sadness and know you went through tough times as well. 

     

    I should know this week what they are going to try. and the Doc’s I have did go to MDA and train there. So I feel good that they are taking time and doing this right, I just get impatient. And at times angry that my PCP would not listen to me the last couple of years so he is no longer my Doctor. I have a new one now. 

     

    I can’t wait for the victory dance.. but I still say.. Normal is a setting on my dryer !... I have never really been the type to ask for help. I have always been the one offering help. This is new to me, I am just not sure what to do at times.

    Prayers and Hugs, Kritter

    kritter, your grammy was

    kritter, your grammy was right so fight on my friend.  you can and will do whatever it takes to kick a$$!  i am praying your eyes will not be affected and look forward to seeing you do that victory dance.  please keep us posted on your progress.  keeping you in my thoughts and prayers.

    God bless you friend,

    dj

  • wmc
    wmc Member Posts: 1,804
    Kritter said:

    Logged in..

    Hi everyone and thank you for the words of encouragement. From what I understand the tumor is very large, and they don't want to do removal surgery before the radio/chemo, the ENT wanted to try to reduce it, as according to the NP..with the size it is now it would be too disfiguring. Both of my eyes could possibly be affected. If I lost one I am sure I could handle that, but not sure if I lost both. 

     

    My Grammy used to tell me that God never puts more on our plate than we can handle.. well like I used to reply.. I am ready for dessert ! I have climbed a lot of hills in my life but this time.. as Marty Robbins sings. * Lord this time you gave me a mountain.*  It’s just going to be harder to climb, and I hope I can get there.

     

    Everyone on here is just so amazing to me, it’s like I read your words of encouragement and I feel better. But at the same time sad that you have been there before me, to feel the sadness and know you went through tough times as well. 

     

    I should know this week what they are going to try. and the Doc’s I have did go to MDA and train there. So I feel good that they are taking time and doing this right, I just get impatient. And at times angry that my PCP would not listen to me the last couple of years so he is no longer my Doctor. I have a new one now. 

     

    I can’t wait for the victory dance.. but I still say.. Normal is a setting on my dryer !... I have never really been the type to ask for help. I have always been the one offering help. This is new to me, I am just not sure what to do at times.

    Prayers and Hugs, Kritter

    Like your Grammy........

    My mother said the same thing to me. I do feel he pushes you right to the edge some times, but never over. I prayed to have just the streight to handle what ever it was to be. My prayers were answered 10 fold. Less then five people thought I would make it but I knew I would. I will keep you in my prayers as well.

    Bill