Noob with floor of mouth cancer

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  • ozymandible
    ozymandible Member Posts: 324 Member
    edited March 2021 #42
    Another thing... if you're

    Another thing... if you're following this thread because you won the cancer lottery... if you take pain pills and get to the point where you need gobs of them call your doctor and ask for more and if the pain  gets really bad start keeping track of when and what you take so you don't take too many.

    I started doing this because there were a few really bad nights that I doubled down on some items and I am afraid of ODing or blowing up my liver.

    Will drop by sometime after the chat with the anesthesiologist.

    Later.

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited March 2021 #43
    Thanks mg.  Yes, it is a  big

    Thanks mg.  Yes, it is a  big plus to be able to eat by mouth.  I can still taste everything and it still tastes good.    Really not looking forward to the NG tube and not being able to swallow and all of it.  Am trying to cook halfway decent meals for all the cool kids who can still chew but none of us have the same appetite we used to .

    My husband is trying to drop a few, my daughter has braces so between the three of us there is much lost enthusiasm and we're all a bunch of foodies.

    I am using protein powder in my shakes like the nutritionist suggested because I can't chew beyond scrambled eggs.  I will have to start doing some kind of jamba juice knockoff with spinach or kale in it too I suppose.  Will have to maintain supply of frozen fruit to use.  Not really digging the fruit too much right now though.  I blended up some salad with a hint of dressing and was thoroughly underwhelmed!

  • wbcgaruss
    wbcgaruss Member Posts: 2,451 Member
    edited March 2021 #44
    ozy As Far As

    Insurance goes I recently had something rejected and the nurse told me when they do that they just resubmit it and it will be covered eventually. I assume most 0ffices will resubmit as often as necessary. Also as far as pain or any other meds taken during cancer treatment I kept a sheet of paper handy and noted when I took each med as you can be stressed or tired and wonder did I take that pain med so here you have a record and don't have to wonder about it-Take care-God Bless-Russ

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    #45
    ozymandible said:

    Thanks mg.  Yes, it is a  big

    Thanks mg.  Yes, it is a  big plus to be able to eat by mouth.  I can still taste everything and it still tastes good.    Really not looking forward to the NG tube and not being able to swallow and all of it.  Am trying to cook halfway decent meals for all the cool kids who can still chew but none of us have the same appetite we used to .

    My husband is trying to drop a few, my daughter has braces so between the three of us there is much lost enthusiasm and we're all a bunch of foodies.

    I am using protein powder in my shakes like the nutritionist suggested because I can't chew beyond scrambled eggs.  I will have to start doing some kind of jamba juice knockoff with spinach or kale in it too I suppose.  Will have to maintain supply of frozen fruit to use.  Not really digging the fruit too much right now though.  I blended up some salad with a hint of dressing and was thoroughly underwhelmed!

    ozy,

    I was able to get through treatment, without ever using my feeding tube - but I feel I was the exception, not the norm.

    Solid food became impossible for me, though - at one point. My girlfriend made smoothies that really pulled me through. She spent a lot of time researching them, has helped other people that I've met on here - and if you'd like me to get you in touch with her, I'm sure she'd be glad to help you, too. (Just PM me - if you're interested.)

    I read through your posts on here - and you still strike me as incredibly strong and positive woman. 

    I hope you have a nice day!

    Curt

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited March 2021 #46
    OMG God is sooo good.  

    OMG God is sooo good.  

    I had another good day.  I ate a ginormous breakfast of sausage, scrambled eggs, tater tots and bread soaked in hollandaise sauce!

    Just when I thought my chewing days were over.  Of course I only chewed on the good side.  I think this happens on days I have faithfully taken pain pills every 4 hours and thoroughly numbed my mouth with lidocaine.  I was just like Meg Ryan in that movie.  ?

    I scheduled my pre op C19 test.  Aside from that I only have three zoomie things until Commando Time. ?

    The Boy will take me to get my C19 test and drop me off on surgery day.  Just have to keep it together until then so The Seeing Eye Kid doesn't freak out.  She is a such a fragile little sweetie....

     

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited March 2021 #47
    I got my PET/CT reports and I

    I got my PET/CT reports and I'm a bit worried.

    "Enhancing partially necrotic(?)right oral tongue mass measuring up to 3.5 cm compatible with biopsy-proven squamous cell carcinoma.  Suspicious right level 1B and 2A lymph nodes measuring up to 8 mm.

    Asymmetric enhancement along buccal surface of the right mandibular body. Recommend correlation with direct visualization."

    I am getting the distinct impression that it possibly has gone into my lymph nodes AND my jaw even though they told me it wasn't likely.  "Partially necrotic" isn't sitting well with me either.  I guess I really did have "death breath".  :(

    Anyway, nothing new to report here.  Ran a few more errands.  The big day is getting closer and as scary as it is I'm looking forward to getting this taken out.  Maybe I won't hurt so much but I do hope there will not be too big of a chunk missing out of my head...

    Thanks for reading, commenting or just following along and hanging in there with me.

    :  )

  • ozymandible
    ozymandible Member Posts: 324 Member
    #48
    They didn't say what stage it

    They didn't say what stage it is.  Must be at least three.

  • wbcgaruss
    wbcgaruss Member Posts: 2,451 Member
    #49
    ozymandible said:

    They didn't say what stage it

    They didn't say what stage it is.  Must be at least three.

    ozy Talk To

    Whoever is responsible to interpret this for you which usually is your ENT or Radiologist or whoever is heading up your treatment. These medical terms all sound well sort of dire but you will find many times once they explain them in terms the average person understands it's not as bad as it sounds technically. And ask them the staging on it.-Take care-God Bless-Russ

  • ozymandible
    ozymandible Member Posts: 324 Member
    #50
    I had zoom meetings with the

    I had zoom meetings with the palliative specialist, the speech therapist/rehab nurse and a nurse who advises people and helps them manage care of NG tube, trach, etc.

    Palliative specialist said I could double down on pain relief.  Today is the worst day yet for pain.  I want to curl up in a little ball and go to sleep but ot hurts too much.

    One thing I did was put one of those disposable mouth guards(for people who grind their teeth)in my mouth.  It's in there upside down just to try and keep my tongue off my teeth because my nerve pain increases greatly when my teeh touch my tongue.

    It feels someone tried to strangle me today.  I can't wait until they cut this crap out of me already and I pray I don't end up needing radiation because that scares me even more than this surgery.

    Sorry for whining.  :)

  • wbcgaruss
    wbcgaruss Member Posts: 2,451 Member
    #51
    ozymandible said:

    I had zoom meetings with the

    I had zoom meetings with the palliative specialist, the speech therapist/rehab nurse and a nurse who advises people and helps them manage care of NG tube, trach, etc.

    Palliative specialist said I could double down on pain relief.  Today is the worst day yet for pain.  I want to curl up in a little ball and go to sleep but ot hurts too much.

    One thing I did was put one of those disposable mouth guards(for people who grind their teeth)in my mouth.  It's in there upside down just to try and keep my tongue off my teeth because my nerve pain increases greatly when my teeh touch my tongue.

    It feels someone tried to strangle me today.  I can't wait until they cut this crap out of me already and I pray I don't end up needing radiation because that scares me even more than this surgery.

    Sorry for whining.  :)

    OK ozy Glad

    You got all your meetings taken care of even though it is online but that is convenient as you can be at home and avoid risks. It is good they increased your pain meds as you need more for now no sense in being in pain all the time. Hey don't worry about whining a little that's OK as you have your challenges to deal with but we are praying and rooting for you. Here is hoping and praying your operation goes exceptionally well and is a smooth operation and have greatly skilled docs-Take Care-God Bless-Russ

  • ozymandible
    ozymandible Member Posts: 324 Member
    #52
    Thanks Russ! (and any lurkers

    Thanks Russ! (and any lurkers who wish me well) The Boy took me to the drive through C19 testing place today.  We ran a couple of errands and had a quick bite to eat with my mom and did a couple more things to get his room ready.  It was a beautiful day and it was great to spend some time with him just hanging out when we got to town early before the test.

    Was tired when I got home so I took a nap.  The Seeing Eye Kid(who stayed home to look after her dad)made knock off Chik Fil A sammies for dinner.  Very nummy.  The Seeing Eye Kid is very good at those.  :)

    Just a couple more days to go.  Gathering what I need to pack for my trip.  Gave the Seeing Eye Kid log in info, credit cards and instructions for shopping while I'm gone.

    Looking forward to ditching this almost continuous earache and not having to marinate my mouth in lidocaine.  It smells like the hospital!  Gross!

    :) 

  • ozymandible
    ozymandible Member Posts: 324 Member
    #53
    I have another tip to post. 

    I have another tip to post.  When they did the C19 test, they swabbed my mouth and my nose.  I numbed my mouth beforehand but couldn't do anything about my nose.  I was afraid my mouth would be the worst but that was okay.  I only groaned and whined about my nose.

    When I got home it was nagging me all the rest of the day.  My daughter said hers bothered her for almost a week but she had sinus surgery on one side and wouldn't you know it that's the side they picked.  It's got a real narrow part so the qtip really hurts when it goes in.

    So what I did was get my sinus rinse bottle, put the warm water and packet in and added a couple of drops of lidocaine and lavender oil and shook it up real good before rinsing my sinuses.  

    It never bothered me again.

    This is my last day at home.  I am scurrying about and straightening everything, washing all the bedding and I'm completely packed except for eyedrops and my electronic entertainment and communication devices.  My clothes are laid out.  I guess I'm as ready as I'll ever be.

    The pain is getting worse by the day.  I put some of the triamcinolone acetonide dental paste on there that my ENT guy prescribed for my mouth sores back in the day and it burned like I don't know what.  I guess cancer cells really don't like that stuff.  : ).  It was always a hassle to use anyway.  Diatomaceous earth worked better, was cheaper and a heck of a lot easier to put on but my mouth is so sensitive after getting cancer I'm not about to try that.

    Hurt like hell this morning.  I used lidocaine, lavender drops and watered down peroxide to numb and help get rid of the dental paste and coated it with a little olive oil.  I'll have to try coconut oil and see how that works.

    Tonight The Boy will be sleeping over so we don't miss our go time.  We're probably going to order pizza for dinner.  I'm so doped up now if I go to sleep sometimes I'm afraid I won't wake up.  I could just be worn out though from racing all over the house straightening and cleaning.

    Later.  Gonna clean the litterbox and check on laundry and cook brekkie and..... blah, blah, blah to stay busy, haha.

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited March 2021 #54
    I am back home.  Worst week

    I am back home.  Worst week of my life I can't imagine what it's like for all t he rad folks.  My husband went to hospital ywo days after I did.  They put him on a ventilator and sedated him.  He is still there.

    My kids picked me up and helped  me unpack all my supplies and set up tye drool sucker machine.  I only fed three times today too tired.

    Trach wound dressing blew open so when I was taking a shower I got a little bit of water in there that I had to cough up.

    Can't believe I made it.  I was so stressed out worrying about my family... Clung to the cellphone desperately.

    I didn't feel like I was going ton come out the other side until RN Suzy Lee came along ike an angel straight from heaven.  She worked sonhard and made me feel so safe and cared for.

    Now trying to taper oxy and deal with liquid diet but its great to be alive.

    Hopefully can get good sleep after not sleeping for a week.

    Thanks to everyone.

  • wbcgaruss
    wbcgaruss Member Posts: 2,451 Member
    edited March 2021 #55
    ozy So Glad

    You are home safe. Sounds like you had a tough time but you made it. Those nurses are something ain't they. They were a sincere blessing to me too anytime I was in the hospital and for that matter, all the folks who helped me and treated me were a gift from God. They treated me like family and it sounds like Suzy Lee treated you that way also. Continued Blessings to you now as you recover, Wishing You the Best-Take Care-God Bless-Russ

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited March 2021 #56
    Just wanted to say something

    Just wanted to say something else here so nobody misses anything.  No matter what I did I could not keep the damned secretions down.  I lost it one night because all I ever did was suction cough and try to swallow before I choked to death.  It was becoming such a struggle that I was becoming very weak.  It was exhausting. My daughter was staying up with me the way I used to stay up with my husband just praying I could keep up the vigil and not doze off was terrified he might not wake up.  

    I went to ER, had a follow up at the HNC unit and went home and finally it got better.  I had to just ride it out.  Was nothing they could do about it.  If you havecthe same surgery I did you'll probably have to just suck it up too.  Looking back, I feel very stupid.  It really was a bad week though.  A perfect storm.  Right around the day of my surgery, all hell broke loose.  I made sure errands were done, easy meals planned,  bills paid that would be coming due and people checking on my mom and kids who were worrying...

    My husband went to ER.  He is still there in hospital now.  My boy, who helped the admitting department with my husband's information after the hospital he went to called my cell and I had to decline the call because I quite literally was unable to speak went to ER after trying to get his tonsillitis taken care of  3 or 4 times at urgent cafe clinics.  My cat was beginning to lick all her fur off because my husband and I were gone.... It was just one thing after another piling on and piling on.  These were things I hadnt foreseen or planned for although I did mention that maybe husband should go to hospital but he refused maybe trying to make sure I went and had my surgery done...

    Maybe if all this stuff didn't happen I would hav handled things better a handful of other major things not germane to the discussion here...

    Bottom line is you CANNOT get around it it is tough and mean and breaks some people.  I thought about little kids who get cancer and how on earth do they get through?  They must have awesome parents.

    Anyway, I have made it through another shower, the tube feeding which I was too weak to do at the start is old news and here I am shuffling circles around the others but we'll all get there one step at a time.  

    They are saying tube might come out next week so maybe no radiation but Ill keep all the stuff around a while just in case.  When I learn how to eat without choking to death I wonder who I can donate unused supplies to?  Bueller?  Anyone?

    A final note on my treatment facility and the nursing staff they really made things a lot easier during checkout we got everything we needed it was coordinated perfectly.  That is such a blessing.  It really is hard on families who may have little to no help and a suffering relative to drive all over town looking for specialty items.

    So my positive mental attitude went away for a while.  Yours might too but dont worry about it we are all doing the best we can here.

    Thank you.

  • wbcgaruss
    wbcgaruss Member Posts: 2,451 Member
    edited March 2021 #57
    ozy Glad You

    Persevered and got through a tough time.

    It actually brings back memories for me but I did not have secretions my problem was post-radiation and recovery with thick stringy saliva and yes I guess secretions also that I could keep under control when awake with saltwater and baking soda mix rinse but when falling asleep overnight in the recliner I would wake up with my air cut off not being able to breathe and coughing and gagging and doing anything I could trying to clear out this stuff and more than once thought I might die and I did not have a suction machine but probably should have.

    We all go through a difficult time with this cancer treatment, some more than others, and yes many times we have to suck it up as you say or basically deal with it the best we can and we do and somehow get through it. Seems insurmountable somewhat at the time but looking back we realize it really was very tough and we are Blessed we got through it. No need to feel very stupid because you are dealing with situations you never dreamed of and never imagined you would face anything like this. This cancer and treatment can be and usually is a tough and brutal situation to deal with.

    So with your inner strength and will to survive and the help of your daughter you made it through and now you know how tough you are and you can handle anything that comes up in the future even if you get hit again with a bunch of the unexpected's like you did this time.

    ozymandible you are an amazing woman with an amazing daughter and amazing family-Best Future Wishes to You-Take Care-God Bless-Russ

     

  • ozymandible
    ozymandible Member Posts: 324 Member
    #58
    Good news and bad news.

    Good news and bad news.

     Good news is I have been given permission to goof around with liquid soup, coffee, consomme, juices and whatnot.

     Bad news is depending on what pathology says a month of radiation and some chemo very likely.

     Husband is still in the hospital. 

    Struggling through a cuppa just taking it in.  Still got my NG tube-I guess I'll need it for a while.

    Trying not to get upset at all.  Messes up my fluids and makes it hard to breathe.

    Wounds healing beautifully except for the blowhole in my throat.

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited March 2021 #59
    The Dr and I discussed

    The Dr and I discussed replacing one feed with soup or broth by mouth.  Yesterday, I drank one cup of water at the Drs office.When I got home I had a cup of coffee light and sweet.  Later my daughter made me a manuka honey/apple cider vinegar drink that tastes like kombucha or kvass. Finally I made a potato soup mix out of potato flakes and stuff made a cup of potato soup with a spoonful of heavy cream and butter.  That stuff was soooooooo good but potatos were still a bit grainy even after I put the stick blender to it.

    Today I'm going to try congee(no meat just powder/liquid spice and flavoring and stick blended)and green tea.

    Might try and make some strained chicken stock tomorrow.

    Real food and drink tastes sooo good but it takes me a long time to drink/eat.  

  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #60
    Good Info

    Thanks Oz for posting all your progress.  All of it is so informative and helpful.  Keep up the good fight.

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited March 2021 #61
    Still sipping at different

    Still sipping at different liquids all day.  Coffee, tea of all sorts, watered down juice.  Ate two cups of cream of potato soup today.  After I get some supplies in I will start doing smoothies too.  Will add Instant Breakfast, protein powder, peanut butter according to flavors.  Peach nectar....  Doing this because I hate Boost and Ensure.  Lost a couple pounds since trying to eat by mouth more though....  Guess I need to try harder...

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