Update.. surgery again

Been to see the Doc's the last two days and I have to go back into surgery next week on Wednesday. ENT Doc going to go back in and whittle away on the tumor to get me breathing better before the chemo/radio starts. They did this last July and that is how the tumor in my nasal passage was found, they thought it was polyps. 

He is worried due to me only breathing through my mouth right now as it will have a * made only for me* device from tongue depressor sticks. Couldn't use the devices they had. My mouth gets very dry , very quick and always sipping water/tea. 

Still waiting for treatments to begin as they found some lymph nodes they didn't like and had an MRI.. last week, so should know soon, as they are sending me to talk about getting a port put in on next Tuesday. Dang I gave blood yesterday to get ready for surgery and OMG that hurt so bad she ended up using both arms to get it. I feel like a pin cushion.. already. 

Only gained 4 pounds since July.. can't taste.. can't smell.. blasted PEG tube and I keep fighting.. so they are talking about going ahead and starting me on some tube feeding to get my weight up. I just don't have the desire to eat. And my head feels like a bouncing basketball some days.. 

I know it will all be okay soon, just going through the steps and waiting is nerve wracking. 

Prayers and Hugs ! 

Kritter

Comments

  • wmc
    wmc Member Posts: 1,804
    The things we go through.......

    It is just amazing some of the many things we must go through or at least deal with. But we all do, everyday, we just keep pluging foward down the bumpy road of TX, to recovery. Then we keep pluging now we made it to the recovery stage. [Guess we're just a bunch of plugers]. The recovery is on a very slow timetable with everyone just a little differant, but the same too. Always telling ourself to keep positive, then something happens that to everyone else is no big deal, like you got some tast back. That food had some flavor like salt of maybe you could tast peper. To us, that is major, like tell the newspaper big. Maybe you could swallow for the first time in months. Every thing we acomplish is a big deal and very major. Then you relise you have less mucus and arn't coughing as much. Before you relize, 8 days ago was your one year mark. There is so many ups and downs most people don't understand, or really want to really hear. So we come to this site where everyone does understand what we say and mean as well. Yes there will be a few real friends that will be there for you through your fight but not as many as you thought. But on this H&N it's open 24/7 with some of the kindest and most understanding people [Friends] you will every find and they will help you go down that road to hell and back, and always be there with a kind word of encouragement.

    Kritter, this is why you will fight and beat this. Yep food has no tast, today, but it will soon. There will always be prayers and best wishes and you will never need to ask. But always feel free to ask. Remember venting is good and just putting down in writing helps a lot.

    Have a good day today and a better one tomorrow.

    Bill

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    dang, Kritter, you've got a

    dang, Kritter, you've got a lot on your plate.  so sorry you have to have another surgery but to keep you breathing, i guess its for the best...lol.  praying all goes well for you.  I understand about being a pin cushion, I hate needles and I only give them 2 times and then i make them get omeone else.  i think the needles is the worst part of any medical procedure.  hang in there, hoping tx gets started soon.

    God bless you,

    dj

  • Kritter
    Kritter Member Posts: 147
    wmc said:

    The things we go through.......

    It is just amazing some of the many things we must go through or at least deal with. But we all do, everyday, we just keep pluging foward down the bumpy road of TX, to recovery. Then we keep pluging now we made it to the recovery stage. [Guess we're just a bunch of plugers]. The recovery is on a very slow timetable with everyone just a little differant, but the same too. Always telling ourself to keep positive, then something happens that to everyone else is no big deal, like you got some tast back. That food had some flavor like salt of maybe you could tast peper. To us, that is major, like tell the newspaper big. Maybe you could swallow for the first time in months. Every thing we acomplish is a big deal and very major. Then you relise you have less mucus and arn't coughing as much. Before you relize, 8 days ago was your one year mark. There is so many ups and downs most people don't understand, or really want to really hear. So we come to this site where everyone does understand what we say and mean as well. Yes there will be a few real friends that will be there for you through your fight but not as many as you thought. But on this H&N it's open 24/7 with some of the kindest and most understanding people [Friends] you will every find and they will help you go down that road to hell and back, and always be there with a kind word of encouragement.

    Kritter, this is why you will fight and beat this. Yep food has no tast, today, but it will soon. There will always be prayers and best wishes and you will never need to ask. But always feel free to ask. Remember venting is good and just putting down in writing helps a lot.

    Have a good day today and a better one tomorrow.

    Bill

    Everyday a different day..

    Thank you so much, that is one reason that I joined this site. The caring and concern shown by people on here is amazing. 

    I had a bad day today, but it got better. Made some decisions about my health care Doc's.. and now I feel so much better. 

    Seems like you said a lot of people have stopped calling or coming by, but I don't blame them. This is changing me in a way I don't go out or do the things I used too. But that is only temporary. I have never been known as normal.. that is a setting on my dryer. ~smile~.

    I am looking forward to tasing again.. smelling again.. but taking one day at a time to get there.. 

    Prayers and Hugs ! 

    Kritter

  • Kritter
    Kritter Member Posts: 147

    dang, Kritter, you've got a

    dang, Kritter, you've got a lot on your plate.  so sorry you have to have another surgery but to keep you breathing, i guess its for the best...lol.  praying all goes well for you.  I understand about being a pin cushion, I hate needles and I only give them 2 times and then i make them get omeone else.  i think the needles is the worst part of any medical procedure.  hang in there, hoping tx gets started soon.

    God bless you,

    dj

    Big plate..

    Alwas something new every day.. or a new issue to deal with. Surgery was cancelled. Supposed to be starting Chemo possibly next week as was told my plan is about ready. Meeting with surgeon on Monday to talk about date for port. Was hoping to have it in before Chemo starts but not delaying due to it. I just hate eedles so this bad for me at times.. I know how you feel.. 

    Prayers and Hugs ! 

    Kritter

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    staying positive

    Kritter,

    When it rains it pours.  You are certainly getting off to a rough start.  Hopefully, it will balance  out.

    The big picture is you getting through in one piece with these times only hiccups to a strong finish.

    Keeping my fingers crossed for you.

    Matt

  • phrannie51
    phrannie51 Member Posts: 4,716
    Kritter said:

    Big plate..

    Alwas something new every day.. or a new issue to deal with. Surgery was cancelled. Supposed to be starting Chemo possibly next week as was told my plan is about ready. Meeting with surgeon on Monday to talk about date for port. Was hoping to have it in before Chemo starts but not delaying due to it. I just hate eedles so this bad for me at times.. I know how you feel.. 

    Prayers and Hugs ! 

    Kritter

    There's a good chance

    that not very long after they start rads and chemo, the tumor will start to really shrink....maybe not the first week, but I'll bet you notice something by the end of the second week.  It amazed me (and delighted me) to see lumps disappearing, and the ENT saying things like..."down 20%"......"down 60%"....the 60% was at the end of the third week.

    You go girl!  The port, once in place will take you away from facing needles all the time.....I loved mine so much I kept it almost 2 years :).

    p

  • Kritter
    Kritter Member Posts: 147
    CivilMatt said:

    staying positive

    Kritter,

    When it rains it pours.  You are certainly getting off to a rough start.  Hopefully, it will balance  out.

    The big picture is you getting through in one piece with these times only hiccups to a strong finish.

    Keeping my fingers crossed for you.

    Matt

    Hi Matt

    Matt,

    I sure hope you are right... some days I don't think I can get through this. And treatments haven't even started yet. 

    They cancelled my surgery, my Radio/Onc, said it would change things and I would have to be re-scanned and start over. My ENT thought it would get me open to breathe better. And I got an attitude with my primary care Doc today and I canned him and got a new one. 

    But I feel better now, and hoping things start running smooth for me soon. 

    I hope things are going well for you..

    Prayers and Hugs ! 

    Kritter

  • Kritter
    Kritter Member Posts: 147

    There's a good chance

    that not very long after they start rads and chemo, the tumor will start to really shrink....maybe not the first week, but I'll bet you notice something by the end of the second week.  It amazed me (and delighted me) to see lumps disappearing, and the ENT saying things like..."down 20%"......"down 60%"....the 60% was at the end of the third week.

    You go girl!  The port, once in place will take you away from facing needles all the time.....I loved mine so much I kept it almost 2 years :).

    p

    Phrannie

    That will be making me smile for the dirst time in a long time when they say * down 20% or more * on this tumor as it is very large I am told. 

    Tumor.. Could be what is giving me * attitude* .. as some days.. I stay in bed and away from people so not to hurt anyone's feelings. Other days I don't even feel sick. 

    I now the port will help some.. but will still have to be stuck at times... 

    You are just the sweetest person... 

    Prayers and Hugs !

    Kritter 

  • donfoo
    donfoo Member Posts: 1,771 Member
    one day at a time

    Every one of us is unique and our journey is unique as well. Nobody can predict what each day brings so you really have to take note of today and enjoy what is all around you. Go outside, take a deep breath of fresh air, look at the trees and leaves, listen to the wind. Each day is precious and not appreciating it is a loss.

    You will get through this, just do it one day at a time.

    Don't fret much over your primary as you are at the point where all your medical care comes from specialists. Humm.. I'm a 16 months post and still have not seen my primary, no need. All my appointments are related to post tx care. Guess I should check in with her.

  • Goyca
    Goyca Member Posts: 220
    Kritter I hate to read that u

    Kritter I hate to read that u r having another surgery... But as said before, if its ur better option then let it be. I wish u good luck in this. And stay strong :)

    forget about waiting. Try to make it one day at once . It's easier to be at the present. :)

     

    sending u hugs and prayers.

    Goyca

  • Hondo
    Hondo Member Posts: 6,636 Member
    Surgery

    Wow sounds like you are going through a lot before treatment even begins. I will continue to keep you in prayer everyday and hope the doc can bring you some help in breathing soo.  

     

    Tim Hondo