First Follow Up

Hi ‘T’,

That sounded like a meal fit for a king, I crown thee “T King of the early eaters”.  You know, I could eat, I chose not too (it felt to blasted weird).  Hey you still have that PEG or are you PEGless, just wondering how you consumed that feast.

Go to rehab, learn the exercises and work that shoulder, it can’t hurt and it most likely will help.

My chemo onc said to me “you are cured”, I told her that it sounded nice, but I’ll believe it some time in the future.  Like you I opted for the full-meal-deal (surgery, rads, Erbitux).

Keep healing,

Matt

donfoo said:

Yeah give me a PEG so I can

Yeah give me a PEG so I can say I GLORIOUSLY enjoyed that seafood mixup. sounds great. I too afraid I'd get a bite or two down than see that GLORIOUS meal see its UNGLORIOUS demise on the way to the disposal. wants to make me cry thinking about it.

Sounds like things are moving along as can be expected and no new surprises. Those scans will be coming up pretty soon.

On the topic of rebuilding, my thoughts are evolving but I want to make sure that all the nutrition and hydration first go toward tissue rebuilding from the damage inflicted during the treatments. I do not want to spend a single calorie or gram of protein on strengthening my upper body while my throat is still mending for example. Just when and how that happens, I will be watching you! LOL

Take care. don

 

Gosh, you made me hungry just reading about the birthday celebration. Now, if I could just figure out a way to turn hamburger into shrimp & lobster.  LOL

I'm so glad to hear that your recovery is going well, albeit a little slowly for you, I bet. You just keep chuggin' along, my friend. Sorry though, that your shoulder is giving you fits, but hopefully the therapy will fix you right up.

Take care,

Luv,

Wolfen

She is right it does take a year or better to get the mouth back to what will be the new normal. I remember my teeth hurting and almost feeling like they were loss while chewing. It's funny how so much change takes so long to come back to the point that one day we just realize its back. It is safe to say that even two plus years down the road you will notice changes.

With your discription of Marcia's birthday celebration sounds like the taste thing is on track. Did you take notice that celebrating her birthday this time had a whole lot more meaning than previously? Even little things like right after I am done posting this I am making a cup of coffee and I am going to go outside with the dog and just stare into the woods and enjoy the quiet. I always had that luxury before treatments but now it has so much more meaning. Just my thought for today.

Enjoy the weekend "T". I am happy your recovery is well on track. Life is good.

      Jeff

fisrpotpe said:

tracking

your tracking is well on the way to an exciting new normal. 

 

congrats on the news and years to come game plan. 

 

john 

Birthday wishes to Marcia and congrats on a rather uneventful report. I was room temp for everything, including water, atleast 6 months if not 9 months. I tolerated hot before cold. I could take milk and Ensure straight out of the fridge and it seemed like milk helped the food go down easier than water did. A year post, when I get a shake or eat ice cream, the first bite or two are difficult but then my mouth adjusts and it tastes good. I'll say a little prayer that physical therapy works as well for your shoulder as it did mine, The therapist gave me some elastic bands to work with and insight of a couple of weeks, I made great strides. Initially, I could not raise my arm to wash my own hair. Following therapy, I could cross my arm over my head and touch the opposite ear.  Good luck!

Candi    

Great stuff Tim, When you are performing, (I know you are a solo act) do you stand or sit on a stool to play and sing? Rehabing the sjoulder is great, it's a goal and will help distract from all the other crap as you mend. I had my last rad and chemo on June 17th 2009. My taste is totally back, saliva is 80%, am now 180 lbs (went down to 145), I drive a pickup for NAPA 3 days a week, nine hour shifts. Voice has been back since 3 months after rads, of course I don't sing for extended periods, just the odd song with my guitar maybe twice a week, so I don't now how it would hold up in a 2 hour concert. So it won't take long for you to get up to speed. Am going to see Peter Frampton with B.B. King in Lancaster in August. I would love to see your act, maybe I will take the trip to WV to see you play, in a few months let me know where you are playing, you have my e-mail address. Denis

alligatorpointer said:

Living while recovering

Don, your comment seems to be a put-down of trying to live as fully as possible during the recovery phase.  It is a very positive act to go out to dinner in celebration of a loved one's birthday and find happiness in eating even a few bites of delicious food and then take the leftovers home to enjoy later.  It was delightful to read T's post about doing exactly that. I admire his positive attitude and determination to live as fully as possible while he is recovering. Each survivor copes in his/her own way.  Whether or not a PEG is used as an aid to supply the body with the nutrition needed for healing is something that nobody else should be judgemental about.  Your suggestion that overall fitness should not be attempted during the long healing process required by the throat does not make any sense to me.  My son completed tx (35 rads with concurrent 7 weekly cisplatin) in Sept. and was motivated to regain his physical fitness in order to pursue his passion for downhill skiing this past winter.  Because he was determined to ski (he skis expert trails) he got back out on the slopes in December and within a few weeks was able to ski 4 to 6 hours four days a week.  He finished the ski season the end of April with a total of 60 days on the slopes.  He had a PEG placed at the beginning of treatment but did not use it until the last two weeks of treatment and for two weeks after treatment.  He would have lost a lot of weight and been much weaker without the benefit of the PEG.  The PEG also helped him maintain adequate hydration.  In addition to the cans of Jevity, he poured water into the PEG (Smart Water with electrolytes) and also tried to swallow sips of water frequently to maintain his swallowing muscles... but used the PEG to get the required 3000 calories needed for healing.  He used MUGARD during treatment and did not have any mouth sores or thrush although his throat was very sore at the end of treatment and swallowing was painful.  He used the cream his Rad Onc prescribed for the skin on his neck and had only a mild sunburn-type redness which never blistered.  He had a PET scan in Nov. and it was clean ... NED.  He now has 95% of his saliva and taste bud function and eats anything he wants with no swallowing problems and loves to cook gourmet meals for himself and friends.  Now that ski season is over, he is keeping fit by roller-blading, hiking, camping.  He is 51 years old and embraces life.  I guess what I am trying to tell you is that while there are similarities in terms of the general experience with this type of cancer, the details are different for each patient.  Each patient deserves support and respect for what they are facing and how they choose to deal with it.  I will also be watching T... with much admiration ... and cheering him on in his quest to recover and live as fully as possible.

So sorry you read my post so wrongly, I was wanted to celebrate T enjoing a meal. People need to lighten up, life is better when not a stressed out and making stuff up or minimally wasting good cycles misintreping a jest in kind.

All that other stuff, don't know. I was just trying to communicate if you are just brining in minimum nutrition then it seems common sense the body uses those first to rebuild all the damage done first, then start rebuilding mass and other stuff. And by not breaking down tissue on purpose and that is what hard exercise does, then why give the body even the opportunity to get into more of a nutrition deficit. But hey, I am no med pro or even a nutritionist so only basing my viewpoint on common sense or maybe that should be layman viewpoint. If your son has no trouble getting sufficient calories for both rebuilding cancer damaged tissue AND building new core strength so much the better. Again my point is if your body is nutritionally challenged, then do not risk getting full recovered first, that is all. Maybe you just got up grumpy today, but i don't even know you and don't appreciate your note taking a comment and fully personalizing it for your use as it certainly does not bring anything positive to me if I may so respectfully offer that opinion.

I have heard of ppl consuming thousand of extra calories each day and the body not gaining much back at all. That tells me the body is using all those extra calories to rebuild core lost tissue and functions.

donfoo said:

sorry

So sorry you read my post so wrongly, I was wanted to celebrate T enjoing a meal. People need to lighten up, life is better when not a stressed out and making stuff up or minimally wasting good cycles misintreping a jest in kind.

All that other stuff, don't know. I was just trying to communicate if you are just brining in minimum nutrition then it seems common sense the body uses those first to rebuild all the damage done first, then start rebuilding mass and other stuff. And by not breaking down tissue on purpose and that is what hard exercise does, then why give the body even the opportunity to get into more of a nutrition deficit. But hey, I am no med pro or even a nutritionist so only basing my viewpoint on common sense or maybe that should be layman viewpoint. If your son has no trouble getting sufficient calories for both rebuilding cancer damaged tissue AND building new core strength so much the better. Again my point is if your body is nutritionally challenged, then do not risk getting full recovered first, that is all. Maybe you just got up grumpy today, but i don't even know you and don't appreciate your note taking a comment and fully personalizing it for your use as it certainly does not bring anything positive to me if I may so respectfully offer that opinion.

I have heard of ppl consuming thousand of extra calories each day and the body not gaining much back at all. That tells me the body is using all those extra calories to rebuild core lost tissue and functions.

On both our parts, Don.  Yes, you don't know me because I do not post very often ... but I do read through the threads on here every day and have been concerned about recent threads that seemed to be advocating peglessness (new word?) although there seems to be more of a pro-choice attitude evolving.  Sorry if I mis-read your comment to T and failed to recognize it as the light-hearted humor you intended. And no, I did not "get up grumpy today" nor did I have any interest in "personalizing your comment for my use".  I simply misunderstood your sense of humor and apologize for thinking that you were being judgemental about the use of a PEG. All the details I wrote about my son's recovery were simply given to help you understand where I am coming from in witnessing a positive experience for PEG use and regaining physical fitness early on.   One of the problems with emails and written comments is the lack of vocal cues and body language.  I am sure that you had a mental image of me with a frown just as I was not able to see the smile behind what you typed.   I am among the caregivers who found this forum during a time of desperate need.  The reassurance given by the faithful members who stay here and continue to post messages of hope and caring made it possible for me to stay strong through a frightening health crisis.  I wish only the best for you and everyone else reaching out to each other on this board. 

Good read T, sounds like you are progressing nicely....and the meal sounds awesome to me... As you know, I love seafood.

I was just reading over your thread and see the obvious confidence in your recovery, your general attitude and calmness..., you seem at peace. I see the real T shining through thesse days.

I'm reflecting your first few months or so on here, your fears, worries, anxiety, etc...

You see now what we were telling you back in those days...

You will survive, you will make it through..., and more than likely your voice will make it through as well...

Very rough treatment, but very doable....

And you did it...., congrats,

~John