Ringing the Bell and other things.
Hi Folks,
A BIG THANK YOU to ellamenno, Joe, P and Helen for asking about what's going on as well as a BIG THANK YOU to EVERYONE for your encouragement and support.
Today I rang the bell!
6 chemos and 30 radiation treatments officially ended at approximately 8:35am Wednesday April 24th, 2013.
Here's a pic of Marcia and I posing for the camera this morning 
Although you may not see it with the smile I have on my feace in this photo, the last few days have been horrific. I had my lat chemo on Monday and it knocked me on my keister! The radiation has peeked as well as I can actually feel like I'm burning. Despite liberal use of Specia; Care Cream. my neck is pretty red, even a bit raw in places. Although I'm not peeling, it may be a matter of days before I get some skin burn symptoms and reaction that will require a prescription. The general fatigue, nausea and malais is the worse it's been.
My RO wanted to see me after chemo on Monday and he as well as the team was very concerned about the pain level and loss of weight I've been dealing with. He wasn't too happy about either. Over the last few days, the level of mouth pain has increased and thus I've been unable to consume the amount of calories to maintain my weight. The mouth pain is so intense at times that my fluid intake is suffering as well. The bottom line was that I needed a PEG. In order to consume enough protein and liquids to insure proper healing, a PEG is/was necessary.
Today, after I rang the bell and got a bag of fluids, I went to outpatient surgery and had a PEG installed. I had a slight complication which, with the help of one of the surgeons, on the phone, I was able to fix. Other than some soreness, I'm fine. I won;t be able to use it until Friday as it has to heal. That was the fix I had to do. We got in around 6pm or so. When I got to my room, I took off my short and noticed the area where the tube left me was oozing blood. The dressings were soaked. I cleaned and changed the dressings and by the time I woke up from my nap ( a few hours later), the wound was soaked again. I called the surgeon on call and got one of the two that did the procedure! He wasn;t too concerned and had me re-dress it and apply dorect pressure for about 10 minutes. He said it should slow down substancially or stop. If it didn;t, he said to come to the ER and have him paged. Sure enough the bleeding stopped! He'll be stopping in when I'm getting my fluids tomorrow morning to take a peek. Other than being pretty sore (after all, they did poke a hole in my stomach), I'm fine. The nutritionalist will be coming by as well to go over feeding tube usage and nutrition. The hospital will be prescribing a supplement to use with the tube (can't remember the name). Apparently, it is sent by USPS/UPS directly to my home. I'll be given a supply to last a few days until the package arrives.
So folks, that's the dealo! I made it. It was brutal but I survivrd. I accomplished my goal of getting through treatment without a PEG even if only by a few hours.
I'm looking forward to going home and sleeping in my own bed I'm also looking forward to being able to seeing "da boy". Thank again for your courtesy, encouragement and support!
Positive thoughts and prayers
"T"
Comments
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We were wondering where you were!!
When I saw the pic of you and Marsha my first thought was...."are you sure you're maintaining a good weight?"....the difference between it and your profile pic is significant....then I saw they decided a PEG was in order...sorry you ended up with it, I know you wanted to get thru this whole thing without...ah, but it will be a relief to know your getting what you need (that's stress you don't need). Tho my tube was put in before I started treatment, like you I didn't need one till after radiation was over....but I sure needed it then!
So now let me say...WHOO HOO...DONE! It will be way different getting to stay home most of the time, except for appointments....you get to sleep when you need to, just hang and stare at walls (I did a lot of that)....let your body heal up....things will be tough for a couple of weeks, but then you'll start seeing the improvements....
You done good, T.....and you've been an inspiration to many others....
p
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"T"
Way to go! I'm so very glad for you that this portion of the journey is over & proud as a mom of you. Hope you don't mind another mom. LOL
The bleeding is very scary. Remember, we've been through it 4 times now. So just a suggestion if it happens again. Hubby's was finally put to a halt with stitches that were left in. Now that the rads & chemo are over, you'll probably find that the PEG is one of the easier laps in the race. Here's to smooth eating for a while to keep those calories coming.
You keep smiling that great smile, my friend.
Luv,
Wolfen
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T
I am happy for you to be at the completion of treatment, and wish you the best during recovery. Hang in there, it gets better.......slowly but surely...
Jim
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Congrats!!!
You summed this up well--Brutal, but survivable. That's what every newbie needs to know. It's very tough, but there is a light at the end of the tunnel.
YOu are now into the next stage of this experience, which will bring its own challenges. But, you'll start to fell better, little by little. My advice is to not measure your progress daily--measure it weekly. You take two steps forward and one step back--focus on the forward steps, not the backwards ones.
Mike
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well done T !
I'm sorry you ended up having to have the peg placed....but it will help you through the healing process. I'm so happy you're through the tx phase. Love the picture of you and your gal ringing that bell ! Katie
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Hi "T"
I realized yesterday mid-day that it was a celebration day for you, but with meetings and other things I had to take of I didn't have the time to check in. The problem with my job is more often than not my personal life takes a back seat. This morning I realized it just before heading to work so I figured I better check and see...............there you were. I knew you could do it and now that it's over you could look back and say F U........ I made it............you may have kicked my **** but I won the battle. Speaking of battle I gotta get my **** to work.
"T" seriously, enjoy the day..........you just made mine.
Jeff
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congrats T, I have kept upDuggie88 said:Hi "T"
I realized yesterday mid-day that it was a celebration day for you, but with meetings and other things I had to take of I didn't have the time to check in. The problem with my job is more often than not my personal life takes a back seat. This morning I realized it just before heading to work so I figured I better check and see...............there you were. I knew you could do it and now that it's over you could look back and say F U........ I made it............you may have kicked my **** but I won the battle. Speaking of battle I gotta get my **** to work.
"T" seriously, enjoy the day..........you just made mine.
Jeff
congrats T, I have kept up with your posts and you are such an inspiration! I'm so happy for you!
Patti
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The nightmare
is over T, there may still be a few bad dreams, but each day will bring you closer to your goals. I am so happy for you, you have truly been an inspiration to so many and will continue to help new patients know, it's awful, but doable.
Marcia, you're a doll, keep this boy around, I think you've reeled in a keeper~~
Really I'm just blown away by your kindness,T.~~even when I knew you were not feeling good, there you were letting us know through an update..love you!
In the words of Jon Bon Jovi~~create a memory
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Inspiration
Was so happy to see you have finished this part of your journey. My husband is just starting his, so you are truly an inspiration to us. We are scared, but coming here and hearing your encouragement and watching everyone rally around each other is such a blessing, as this site is. Congrats for being able to ring the bell!!!! Keep up the great work
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t, it seems like u just
t, it seems like u just started yesterday and here u r, finished. wtg!! keep up the good work. now u start your road 2 recovery. congrats on ringing that bell !
God bless,
dj
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Congratulations on completion!!
Hi. Congratulations on completing your treatment. That is a major step. Sorry about the PEG but I fought mine as well. I had a mini breakdown trying to use it the first time as I didn't really feel comfortable using it. Thanksfully, a friend of mine is a nurse and she came over and showed me how to use it. Once I started using it I was really glad I had it. It took the stress out of eating. Also, initially I had some stomach distress while eating. I was convinced at one point that something was wrong and the tube wasn't working. I met with my nutritionist and she told me to slow down the intake of formula. In a week I was doing much better and toward the end I could "eat" a can in about 10 minutes. You will begin to feel much better once you are getting the calories that you need to heal. Congratulations on completing treatment.
I was Stage III tonsil cancer T1N1M0 and finished treatment in September 2012.
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T,
CONGRATULATIONS!
You and
T,
CONGRATULATIONS!
You and Marcia look so happy and relieved that YOU ARE DONE! If I didn't know I wouldn't know from that pic that you were a SURVIVOR, I just would think you were a rock star celebrating you albumn. Lol
Sorry that you needed the peg at the very end, but aleast while you deal with the gama of side effects while healing the last thing you'll need to worry about is fluids and nutrition just pump them. After all my complaining about dysphagia, with the Ensure Plus I swear I never felt stronger and healthier in my life! Which ever one you choose that will help to build you up and keep you up.
You know what's next REST da-boy is waiting for Daddy to take some much needed uninterrupted naps!
When your touring again, make sure I know when your in Philly so Christopher and I can come and see your show! :-)
You are such a man of faith, and the Lord God has blessed you with the strength to pull through, the support and love of Marcia and us(lol), your amazing upbeat personality, an awesome team of Doctors at one of the most reknowned Hospitals in America who not only irradicated your illness but also kept your best interest at heart, Praise God and all the blessings he has rained upon your family!
SO HAPPY FOR YOU, WHEN YOU ARE BACK TO YOU GO OUT TO EAT WITH YOUR LADY AND CELEBRATE GOOD TIMES, COME ON!
God bless my strong friend,
Rachel
Big Hugs0 -
T!
Thanks for the full report out. I know you been feeling bad - the less you post, the more you feeling bad. Sorry about the PEG, it's like a mud race, see who makes it to the other side with some traction. I sort of figured if you got to the end of rads you were back on land but guess not. I'll readjust my target to declare PEGless. LOL
Very happy to hear you are done with rads but no surprise things still cook for a bit. Joe reported in and it does take time on the other side of treatment. Origianlly, I used to metaphor of a hill, the top being end of rads; the more I watch the more I need to come up with a new model as from all I gather gravity does not appear to help much on the other side; a lot more controlled steady descent back to your new normal.
I'm sure you are trilled with being back home as well. For those of us who do not travel to treatments, that must really take its toll as well. In that way, I feel fortunate being able to crawl into the bed in back where I find peace and comfort and quiet in familar surroundings. plus the cats too.
Glad you are on the mend, look forward to your posts.
don
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Tdonfoo said:T!
Thanks for the full report out. I know you been feeling bad - the less you post, the more you feeling bad. Sorry about the PEG, it's like a mud race, see who makes it to the other side with some traction. I sort of figured if you got to the end of rads you were back on land but guess not. I'll readjust my target to declare PEGless. LOL
Very happy to hear you are done with rads but no surprise things still cook for a bit. Joe reported in and it does take time on the other side of treatment. Origianlly, I used to metaphor of a hill, the top being end of rads; the more I watch the more I need to come up with a new model as from all I gather gravity does not appear to help much on the other side; a lot more controlled steady descent back to your new normal.
I'm sure you are trilled with being back home as well. For those of us who do not travel to treatments, that must really take its toll as well. In that way, I feel fortunate being able to crawl into the bed in back where I find peace and comfort and quiet in familar surroundings. plus the cats too.
Glad you are on the mend, look forward to your posts.
don
Ding Dong...that is one big bell...well deserved! It gets easier from here :-)
God Bless,
Candi
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Yippee
"T"
Way to go! It feels so good psychologically to be done with treatment. Now on to the healing process!
My husband finished 2 big rounds of Cisplatin and 35 radiations treatments over 6 weeks last Friday. Have to say, this week is the worst that he has felt. Had appt. with MO today and he is also going to get a PEG if he can't endure 5-6 Ensures a day. I am nagging away and I know he is tired of hearing it.
Good luck to you. Get lots of rest and calories /protein for the healing process.
Pam
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Like we say back home
Good on you mate
0
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