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Ringing the Bell and other things.

fishmanpa's picture
fishmanpa
Posts: 1105
Joined: Jan 2013

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 :)

ringbell1

 

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"

phrannie51's picture
phrannie51
Posts: 3636
Joined: Mar 2012

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

wolfen's picture
wolfen
Posts: 1176
Joined: Apr 2009

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

Hard12Find
Posts: 201
Joined: Sep 2012

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

Mikemetz's picture
Mikemetz
Posts: 334
Joined: Nov 2011

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

 

katenorwood
Posts: 1812
Joined: May 2012

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

Duggie88's picture
Duggie88
Posts: 528
Joined: Feb 2010

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 ass but I won the battle. Speaking of battle I gotta get my ass to work.

"T" seriously, enjoy the day..........you just made mine.

      Jeff

Patti1967
Posts: 186
Joined: Mar 2013

congrats T, I have kept up with your posts and you are such an inspiration!  I'm so happy for you!

Patti

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

I had no doubts you would make it through.....

With some luck, faith and positive mojo, you'll be hollering a tune before you know itt...

JG

Grandmax4's picture
Grandmax4
Posts: 579
Joined: Dec 2011

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

 

Sunshine60
Posts: 74
Joined: Apr 2013

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 :)

debbiejeanne's picture
debbiejeanne
Posts: 2299
Joined: Jan 2010

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 !   Cool

God bless,

dj

 

lorig01
Posts: 67
Joined: Jul 2012

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.

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

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 Hugs

donfoo's picture
donfoo
Posts: 1166
Joined: Dec 2012

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

 

hwt's picture
hwt
Posts: 1854
Joined: Jun 2012

Ding Dong...that is one big bell...well deserved! It gets easier from here :-)

God Bless,

Candi

MICH4EL's picture
MICH4EL
Posts: 73
Joined: Mar 2013

You made it!  Great job!

M

 

denistd's picture
denistd
Posts: 488
Joined: Apr 2009

Way to go Mark, get that guitar all tuned up and shiny for the next gig. Denis

Lovethesun
Posts: 12
Joined: Apr 2013

"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

Roar's picture
Roar
Posts: 239
Joined: Mar 2013

Congratulations!!! Seems like yesterday you started treatment- for me anyway- I know not for you . Stay mentally tough and keep up  The fight. You are now a warrior.welcome to the battle- keep up the good work

ausrebel53's picture
ausrebel53
Posts: 74
Joined: Dec 2012

Good on you mate

Ruben and Jude's picture
Ruben and Jude
Posts: 152
Joined: Apr 2013

Congratulations "T". Glad to hear the treatments are done. Whoo hoo. AND you did meet your goal, so now a guy's gotta do what a guy's gotta do.

God bless and continued success.

Ruben and Jude

 

dunedintech's picture
dunedintech
Posts: 67
Joined: Apr 2013

Now get some healing action going on!

C

 

Kcre30's picture
Kcre30
Posts: 7
Joined: Mar 2013

I see I wasnt the only one who was wondering if you were ok. What a relief to be at the end of this, just when you might have wanted to wave the white flag! My husband his last radiation on Monday. thought he would be a little more excited, but feeling a little too cruddy to muster any excitement. I think we both secretly hoped he'd feel noticably better by the end of the week. from what I've gathered we might have a ways to go yet.

Did you keep your mask as a souvenir? 

It seems like a few people here are on a similar treatment calendar and are just winding down or have just finished. I'm looking forward to hearing how the recuperating goes for everyone.

Kcre30's picture
Kcre30
Posts: 7
Joined: Mar 2013

I see I wasnt the only one who was wondering if you were ok. What a relief to be at the end of this, just when you might have wanted to wave the white flag! My husband his last radiation on Monday. thought he would be a little more excited, but feeling a little too cruddy to muster any excitement. I think we both secretly hoped he'd feel noticably better by the end of the week. from what I've gathered we might have a ways to go yet.

Did you keep your mask as a souvenir? 

It seems like a few people here are on a similar treatment calendar and are just winding down or have just finished. I'm looking forward to hearing how the recuperating goes for everyone.

phrannie51's picture
phrannie51
Posts: 3636
Joined: Mar 2012

lay it in the parking lot, and then run over it on the way out?? Laughing  So far that's been my biggest tempation....put it in the driveway and run over it a few times with the Jeep.

p

CivilMatt's picture
CivilMatt
Posts: 2866
Joined: May 2012

T,

Very good, very happy to hear of your completion (words can’t fully describe the experience).

Now (slowly), get out your bucket list and live life and share your delightful nature with others.

Finally, Marcia, you should relax (some) not too much, but some.

Additionally, Kitty cat, ‘T’ is purrfectly normal and no you can’t play with his new friend (PEG).

Lastly, Silver Sulfadiazine Cream, if the burn is bad and drink, swallow, drink, swallow, it is not really over yet.

Best always,

Matt

cureitall66's picture
cureitall66
Posts: 846
Joined: Aug 2012

Glad you are finished with this part of the journey....yes, rough...but doable! After a few weeks down you will start to feel better. Hang in there!

~C

ILMM13
Posts: 28
Joined: Feb 2013

Congrats on finishing your treatments, "T".  I've been hoping you were doing ok.

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

I'm so happy you got to ring the bell! I will ring mine for you in the morning. I would do it now but it's a very loud bell and wake everyone up.

Sorry you had to get the PEG but honestly it's more of a lifesaver than a burden. I assume with your positive attitude

fishmanpa's picture
fishmanpa
Posts: 1105
Joined: Jan 2013

Hi Folks,

Thank you for all your kind words :) 

The last two weeks have been exceptionally difficult. So much so that it's taken every bit of energy I have just to get through the day. I can barely stay awake for an hour without drifting off into a dream state let alone type something coherently.

Friday morning Marcia and I went to the hospital for the last round of fluids and follow-ups which were all done from the chemo infusion room. I got two bags of saline (one with dextrose) and a bag of magnesium. My bloodwork is passable but needs monitoring. I'll be going Monday to have blood drawn and then the team will let me know whether to report back to the hospital for a blood transfusion. My red and white counts are down a bit. The level of detail and care that I've experienced at Johns Hopkins has been above and beyond. We'll be heading back there regardless in the next two weeks to have the PEG followed up on. There are these little "buttons" sorta holding everything in place that need to be removed and the whole thing adjusted. It's a very strange feeling indeed to have fluid drip directly into your stomach but I see the allure for sure. My throat is raw and there's no way I'm getting anything in but sips of water. I tried some broth and an Ensure and promptly tossed my cookies after a sip. Looks like I'm in this for the long haul. They prescribed me Osmolite. I'm expecting a delivery tomorrow. 

Speaking of tomorrow. It's after 3am Saturday the 27th. We arrived home at around 8pm Friday night. I was exhausted from the drive and promtly crawled through the door and passed out in my comfy chair. I've been up and down since then. It's SO good to be home! Socrates didn't take long to cozy up to me and he's pretty much been with me since.    

The toughest part thus far has been the finish. This is by far the worse I've felt the entire time. The skin on my neck is peeling and I have a prescription of a burn cream that gives me some relief. Later this morning I will take my first official tube feeding. We're shooting for a 1/2 a can and the other 1/2 3-4 hours later. The goal is to get to 7 cans daily which will be 2500 calories. Of course, anything I can take in orally is a bonus.  

Concerning the mask. Yes, I took mine with me. I don't own firearms but I have friends who do. Once I'm well enough I plan on taking the mask to a range, borrowing a friends 12 guage shotgun and blowing it to itsy bitsy pieces! 

"T"

Duggie88's picture
Duggie88
Posts: 528
Joined: Feb 2010

Hi "T"

It will get better. I remember the osmolite days, gives the phrase breakfast of champions a whole new meaning. Enjoy the two best days of therapy one can have......Home Sweet Home.

      Jeff 

jcortney's picture
jcortney
Posts: 406
Joined: Sep 2012

The next two weeks are all you need to get through and then the worst is past.  For me, it was important to have a date on the calendar to point to.  Then, just about every day you will see some improvement.  Think about what a big deal that is.  For the last couple of months every day has been getting worse; the scale will finally tip and you'll recognize it.  There will be some of the two steps forward one back, but the forward will way out weigh the back and you'll KNOW IT.

So dig in, cross off the days, hug Marsha, pet the cat and be proud of yourself that you made it though.  Good Job!

Joe

phrannie51's picture
phrannie51
Posts: 3636
Joined: Mar 2012

treatment, but I know you'll be getting your cans of food down in a few days....it is weird, huh?  Glad tho for now, you're just taking in what your stomach can handle.  The one thing worse that trying to swallow with the sore sore throat, it's having it come up from an urpie tummy, with stomach acid in the mix.  The damn tube just creeped me out the entire time I used it....like when you first pour food down it, you get this coolness in your esphagus....strange feeling since it's going up from the stomach instead of down from your mouth....

At least now, no matter how crappy you feel....they won't be pouring anymore chemo into you, and there are no rads left to do....so you can kick back and heal....If you end up with a transfusion, know you're going to feel 75% better after it....I had 3 or 4 during treatment, and couldn't believe how much they pepped me up (well, maybe that's an over statement...LOL...but at least I quit feeling like death warmed over). 

I LOVE your idea of shooting the mask.....we have lots of guns in this house, and I haven't done any target shooting since I was a teenager.....that sounds like a great thing to do with it.

p

katenorwood
Posts: 1812
Joined: May 2012

Well now I have this image of all of our masks lined up at a target range, with all of us blowing the hell out of them.  Not a bad idea.....think we'd need a permit or anything ?  Continued healing T.  One step at a time, and let Marcia have the reigns for awhile.  Hugs sent !   Katie

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