The Countdown Begins

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fishmanpa
fishmanpa Member Posts: 1,227 Member

And here we go! I'm now "T" minus 9 for rads. Two more chemos to go! I can see the finish line!

Unfortunately, I hit the wall pretty hard this week.

Dehydration, despite my valient attempts to drink as much liquid as possible are not cutting it. I've been getting fluids (IV) every day. Solid foods went bye bye a couple of weeks ago. I'm drinking Ensure+, a very high calorie whey protein shakes made with milk, fruit etc. One shake (about 20oz) contains approx 1K calories. I'm barely able to do soups with anything other than broth. That brings the eating to play. My weight, while stable at the moment is at risk of dropping as the after effects of the treatment really start kicking in after it's over. My RO feels I'm hitting the pinnicle of pain and discomfort as I've been pretty sick the last few days. The fatigue alone was hard to fathom. They're already talking about having me stay an extra week just to have fluids put into me. They're trying to avoid a PEG after the fact. I just want to go home! I'm going to call my PCP and see if I can get juiced at his office. I've been here long enough!

Pain has been an issue since December with the three surgeries. It's "set in" according to my RO. Add to that thrush and mucositis and the mouth pain is and has been pretty intense. He talked to me about a fentanyl patch as a possibility but they ended up going with a 12 hour time released Oxy and a short acting liquid dose 30 minutes before eating. A little Magic and Magic Mouthwash is in that mix too. 

Swallowing is an issue and the exercises are brutal as I'm battling nerve issues that are impeding healing. I had a scope done and while there is improvement in the healing of my throat, the radiation is tearing me up a bit. My uvula is taking a beating as are certain areas in the top of my mouth, nasopharynx etc that are taking a big hit. All this presents issues and challenges that warrant a close eye. I'll be seeing my RO again Monday after chemo. 

As you can see, there are a few obstacles to overcome but they're not any different from the many all of you faced. All I can do is continue to put one foot in front of the other and keep moving forward. Treatment is brutal, but you'll survive....

"T" - minus 9 


 

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
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    You will make it

    You are on the launching pad.  My mucositis peaked a little after the end of rads.  Don't do anything fancy in the replacemet department.  You need fluid and calories, nothing else matters at the moment.  Adding a bunch of stuff to your ensure plus is likely to further irritate the situation, and won't make a difference in the short haul.  Just keep chugging along.  You'll get by without a PEG, but you will drop some weight also.  All of that's ok.  TEN, NINE, EIGHT......

     

    Pat

  • donfoo
    donfoo Member Posts: 1,771 Member
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    Great report!

    All in all you have been through you are weathering the battlefield pretty well. Of course much easier to say from the bleacher seats. But you are doing really well and enduring and maintaining your position on the three key areas. They say everything is different for cancer patients going through treatment but I would be willing to stick my neck out and say one that seems nearly universal is the keen sense everyone needs to focus on during radiation/ CRT and that is

    NUTRITION - HYDRATION -  PAIN MANAGEMENT

    You nail those and you squeak through, maybe beatup to various degrees but able to declare victory and wear the "I survived" T shirt standing up, more or less.

    Even though you got some road ahead of you, I am confident you can putt-putt over the finish line intact.

    Hang in there and keep the faith!

    One foot in front of the other, count the steps!

    don

     

     

  • Ingrid K
    Ingrid K Member Posts: 813
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    sorry you're hurting

    Mr. T,

    This is the worst part of the journey as you are finding out firsthand ...but keep the target in sight.

    You are down to single digits....that is HUGE.

    You've got this....keep up the hydration and as much nutrition as you can possibly stand.

    sending you some extra strength.

    p.s. Maybe Marcia can try and make up some of the Magic Mineral Broth (see recipe in SuperThread).   it is very easy on the throat and tummy, and contains all the good stuff.

     

  • Hard12Find
    Hard12Find Member Posts: 218 Member
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    sounds like pretty much what I went through!!!

    Except I had a peg installed early...thank goodness. Sounds like you are doing all the right things, just hang in there and keep counting down to NED!!!!

    Jim

  • rachel12yrsuv
    rachel12yrsuv Member Posts: 435
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    9,8,7,6,5,4,3,2,done!
    That's

    9,8,7,6,5,4,3,2,done!
    That's what I can't wait to hear T! I know your hurting, and somedays just don't feel worth it, but hang in there the Lord is going to pick you up and cross that finish line! Then you get the reward fo all your efforts and NED it is for you.

    You know what my friend I was going to post a complaint about my situation and then as if a message straight from Jesus I remembered where I had already walked and decided if you could do it was grace and dignity then so can I, so without trying thank you for inadverantlly helping me. I pray everyday T that you and Marcia get to rejoice at your next gig when this is all over. We all preach Nutrition, Hydration and don't be a hero get pain meds, but I am also gonna tell u that you need to rest when tired, your body heals then, and besides how can the pac-man I sent u eat all the bad stuff if not resting?

    Hang in there and it will all be over, and just as time flies with our children, you'll be on this site 12yrs from now gaining strength from someone like you!


    God Bless you my friend,

    Rachel
  • Roar
    Roar Member Posts: 269 Member
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    Keep it up

    Stay focused and keep up the good work- the end is in sight- and then it's all downhill- almost

  • NJShore
    NJShore Member Posts: 429 Member
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    Way to go!

    T - minus 9,

    I am so very proud of you. The strength that you entered this battle with still is shining through your words. Your determination is to be admired.

    One other option you might want to investigate, it to see if you can be infused at home. Most insurances will cover it. It's very easy, and something your Marci could help with too. When Dan went in the hospital two days before treatment was over, the MO felt so badly for us that we had not been home in so long, she made it happen. It was awesome when he was hurting, to not have to move him around for liquids. He would have worn half of them out of his system just getting to and fro. This way he could sleep in his chair for a few hours while the bag dripped. The nurses show up every three days and change the IV site. And one delivery guy every week with more liquids. And it's open 7 days a week!

    You might want to make that suggestion and see what happens.

    Glad to hear you are hanging in, you are entering the home stretch.. keep up the good work.

    I'll say a little prayer that maybe it doesn't get any worse than today.

    Kari :)

     

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Other Than That....

    How the hell are you, LOL...

    Like Pat said...hydration and calories... (and Don) pain management...

    You can do it, I'm sure of it, but...one thing you said caused my ears to perk right up..., as I've heard it before... And my nurse gave me hell, LOL...

    You said "attempt", my word was simpler, "try"... My nurse said if you are trying, you're not getting enough in you..., LOL She was a ba.ll buster (pardon my French), no slack from her.... But she was right..., that's when she turned my wife on to "tenting"... gently pinching up the skin on the back of the hand. If you pull it up and it stays "tented up", slow to return, you need fluids... If it snaps back quickly, you are probably good to go...

    Shelley drove me nuts..., settled in, nice and relaxed, and...BAM, pinch my frieakin hands....

    Hang in there, get your hydration, both bags at the facility, and as much as you can get in you, along with 4 - 6 Ensures each day minimum .

    John 

  • cureitall66
    cureitall66 Member Posts: 913
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    Coming along as expected.....

    T,

    I think you are coming along as is expected for the journey. Being able to have the energy to come on here and post is saying alot about your mental state right now....you're doing well, my friend.

    I agree with Pat, keep doing what your doing and don't try to change to much up....you getting it managed the best that can be at this point in time. Hopefully you won't need that PEG, but it's nice to know if you need it, it won't take long to get it in.

    Hang in there!

    ~C 

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Coming along as expected.....

    T,

    I think you are coming along as is expected for the journey. Being able to have the energy to come on here and post is saying alot about your mental state right now....you're doing well, my friend.

    I agree with Pat, keep doing what your doing and don't try to change to much up....you getting it managed the best that can be at this point in time. Hopefully you won't need that PEG, but it's nice to know if you need it, it won't take long to get it in.

    Hang in there!

    ~C 

    Henry Gross

    T, I keep having flash backs of times of old....

    Henry Gross ~ Plug Me Into Something...

    Must be your post and all of this 420 , wacky tobacky talk..., LOL..

    One More Tomorrow ~ All My Love... But then again, there is Shannon...

    JG

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
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    single digits

    T,

     

    All the above plus swallowing.

     

    I am glad you are weathering the storm, keep it up.

     

    Matt

  • jim and i
    jim and i Member Posts: 1,788 Member
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    It will be over soon

    Praying for pain relief and speedy recovery.

    Debbie

  • phrannie51
    phrannie51 Member Posts: 4,716
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    WHOOP!!!!!!

    Gawd, this was a milestone I lived for the first 4 1/2 weeks of treatment....single digits.....whoo hoo for you!!  You're almost on to the road to recovery....so close to that final day when you get to ring the bell and make that ever so important decision of what to do with your mask. 

    Truly, if it's possible...have Marcia make up some of the magic mineral broth.....it was manna.  I was skeptical when I read the recipie, but damn is it ever good even when your buds are fried.  AND it goes down the throat like silk.  It makes a lot, so I just kept it in freezer bags in the freezer, and pulled out a bag when I wanted some.

    It's not time to dance around the kitchen yet, but you can start planning on which shoes to wear. Laughing 

    p

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
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    WHOOP!!!!!!

    Gawd, this was a milestone I lived for the first 4 1/2 weeks of treatment....single digits.....whoo hoo for you!!  You're almost on to the road to recovery....so close to that final day when you get to ring the bell and make that ever so important decision of what to do with your mask. 

    Truly, if it's possible...have Marcia make up some of the magic mineral broth.....it was manna.  I was skeptical when I read the recipie, but damn is it ever good even when your buds are fried.  AND it goes down the throat like silk.  It makes a lot, so I just kept it in freezer bags in the freezer, and pulled out a bag when I wanted some.

    It's not time to dance around the kitchen yet, but you can start planning on which shoes to wear. Laughing 

    p

    you are a tasty gal

    Phrannie,

     

    I thought you were the mac-n-cheese and don’t forget the 4% milk (I got to have some of that).

     

    Matt

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

    you are a tasty gal

    Phrannie,

     

    I thought you were the mac-n-cheese and don’t forget the 4% milk (I got to have some of that).

     

    Matt

    Ya know...

    I can't even look a macaroni in the face these days....and haven't had a gallon of milk in the fridge for months now....it appears that mac'n'cheese soup for months pretty much burned me out for pasta. Laughing

  • Roar
    Roar Member Posts: 269 Member
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    Tough chemo days

    The tough part is almost over - when I got to the end they added another 8 rad sessions- for me the chemo days were the toughest- make sure you get down as much water as you can tolerate a day before chemo, the day of and the days following- you want to keep your kidneys flushed- the more you pee the better- seems as though I was where you at just yesterday and its been 4 months- stay strong and positive 

  • donfoo
    donfoo Member Posts: 1,771 Member
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    Ya know...

    I can't even look a macaroni in the face these days....and haven't had a gallon of milk in the fridge for months now....it appears that mac'n'cheese soup for months pretty much burned me out for pasta. Laughing

    what?

    P,

    I thought you were all over that milk thing? It seemed it worked really well when you were going through rads. Now, your taste is off on milk? I am still trying to get onboard with the ever rocking world of taste buds swaying back and forth. Foot in Mouth

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
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    t, u r n the home stretch now

    t, u r n the home stretch now so hang in there and stay strong.  it will b over b4 u know it.  i'll be praying that the problems you are having will pass and you can have smooth sailing for the rest of your trmnts.  take care.

    God bless,

    debbiejeanne