Previous Thread
Next Thread
Print Thread
Page 4 of 5 1 2 3 4 5
#21623 12-09-2006 06:06 PM
Joined: Apr 2006
Posts: 378
"Above & Beyond" Member (300+ posts)
Offline
"Above & Beyond" Member (300+ posts)

Joined: Apr 2006
Posts: 378
Hi Steve,
Captain Georges is just one of those great places that stay with you. It seemed like the tables of food went on forever. Glad to hear you're going there again.

Jack had the issue you're talking about of not getting enough calories by the food he could eat. So he started drinking cans of formula to keep developing his swallowing ability. It's not bad cold and with syrup. You can also use it as a base to add ice cream and make a high calorie shake. Over time he was able to take in more food at one sitting and then cut back on the cans.

I think continuing to supplement with the formula keeps his calories and weight at the right level. The point is the PEG tube is out and it's still food that he's taking by mouth.

Your family dinner at McDonald's sounds like a blast. It's on to Wendy's next. Here in NJ we are no longer recommending Taco Bell. Today we went out to lunch with friends and Jack had onion rings, fries, an egg cream, and a BIG bacon cheeseburger on a kaiser roll. He was able to eat half in the restuarant, which was probably a normal portion anyway, and finished the rest for dinner. A couple of months ago he would have had to take the top of the roll off the roll so it really does get better.

Hang in there, you have good support from your family and you're getting there. Before you know it that tube will be history and you'll be the one looking back.

Regards JoAnne


JoAnne - Caregiver to husband, cancer rt. tonsil, mets to soft palate, BOT, 7 lymph nodes - T3N2BM0, stage 4. Robotic assisted surgery, radical neck dissection 2/06; 30 IMTX treatments and 4 cycles of cisplatin completed June 06.
#21624 12-11-2006 06:38 PM
Joined: Oct 2006
Posts: 383
Platinum Member (300+ posts)
OP Offline
Platinum Member (300+ posts)

Joined: Oct 2006
Posts: 383
I had an appointment with my Chemo Oncologist today and he was thrilled with my oral intake and overall progress at this point. My bloodwork all looked great and I don't have to have another blood test for 3 months. He said my team had reviewed my status last week during conference and my RO was very pleased with my progress as well. He said everything "felt and looked" real good at this point. Man I felt so GREAT after the visit. When I left it was spiritual, emotional, and a very positive feeling. Another uplifting day of moving forward!!!!! Next step, my ENT next week.

I agree Joanne, it will be nice to loose the PEG tube. It sounds as though Jack handled lunch wonderfully. That's weird you mentioned he had onion rings. For some reason I was intensely craving onion rings this evening. I even looked in the store tonight for maybe some onion petals or chips (something small), but had no luck. I will have to pick up some at a restaurant real soon. Still not to the point of eating out, but I can give them a good fight here at home.

I must say Jack has inspired me to get back in the kitchen. I roasted a chicken and prepared new potatoes and green beans tonight. The family enjoys seeing me in the kitchen again. (yesterday it was a pork shoulder roast and potato cakes!!) Not everything I'm fixing works well for me but it's all therapeutic.

Does anybody know if Mark got Stoj's prescription yet? (LOL)

Thank you all for the support and suggestions.

Steve


SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!

**** PASSED AWAY 10/8/16 ****

#21625 12-12-2006 10:52 AM
Joined: Sep 2006
Posts: 493
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Sep 2006
Posts: 493
Steve,

Great news and you are doing very well good luck with the ENT.

No way Mark gets my scrip...it just comes naturally.

Stoj laugh


Tim Stoj
60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
#21626 12-12-2006 05:36 PM
Joined: Apr 2005
Posts: 2,676
JAM Offline
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Apr 2005
Posts: 2,676
Dear Steve, Are you available to cook for the rest of us laugh . We can book in advance. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
#21627 12-13-2006 03:12 AM
Joined: Oct 2006
Posts: 248
Gold Member (200+ posts)
Offline
Gold Member (200+ posts)

Joined: Oct 2006
Posts: 248
Its funny reading this post made me think about the choices we make in life.I look at the charachters on this post and I was thinking I could go out with Tony and Tim and chase women all night, or I could go visit Steve F. for a fantastic meal,I could go out with an ultimate sirvivor and watch a great high school basketball game with Minniea or I could spend sometime with Joanne and visit some real heroes those that have to face the most difficult decision we will ever be confronted with and that is knowing when to say goodbye and striving to find that inner peace we're all searching for, or I could go help my friend Amy because being a caretaker sucks. Which one would I do? Sorry Tony and Tim I'd be dead in a week if I had to live thru that single life again, Also to Joanne and Amy I am sorry But sometime you,ve got to just get away from this cancer shit. So Minniea get ready we're going out tonite to watch a basketball game.


Mark D. Stage 3 Nasopharynx dx10/99 T2N3M0 40xrad 2x Cisplatin 5FU. acute leuk 1998.
#21628 12-13-2006 02:15 PM
Joined: Apr 2006
Posts: 378
"Above & Beyond" Member (300+ posts)
Offline
"Above & Beyond" Member (300+ posts)

Joined: Apr 2006
Posts: 378
Hey I'm with you on that one Mark, sometimes we all need to get away from this cancer shit and talk about other stuff. Basketball is good. We're planning on spending Christmas day in NYC seeing the tree, store windows and misc lights/decorations - NO cancer invited. Just Jack, myself, the tourists, and 8 million of our closest friends. Should be a nice quiet day. We saw the decorations in the Inner Harbor in Baltimore last night, went to see the laser light/really big pipe organ at Macy's in Philly tonight just so we see how other cities do it. I'm thinking NYC is going to win this one. BUT Jack had swordfish and crab bisque in Baltimore last night and lobster bisque, steak and lobster tail in Philly so clearly these are 2 fine cities to visit. Maybe it's the Christmas spirit?
Regards JoAnne


JoAnne - Caregiver to husband, cancer rt. tonsil, mets to soft palate, BOT, 7 lymph nodes - T3N2BM0, stage 4. Robotic assisted surgery, radical neck dissection 2/06; 30 IMTX treatments and 4 cycles of cisplatin completed June 06.
#21629 12-13-2006 02:45 PM
Joined: Apr 2005
Posts: 2,676
JAM Offline
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Apr 2005
Posts: 2,676
Gee, I think the last time I got the "brush-off" was when I was trying to lure the captain of the football team away from his cheerleader girlfriend. Just to set you straight, Mr.D, were you to come spend some time with us in Cherokee Village, we would choose among golf,trout fishing, canoeing the Spring river, tubing the South Fork, pontooning and fishing on our lakes and end the evenings with drinks and dinner on our deck. smile Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
#21630 12-13-2006 03:07 PM
Joined: Apr 2006
Posts: 378
"Above & Beyond" Member (300+ posts)
Offline
"Above & Beyond" Member (300+ posts)

Joined: Apr 2006
Posts: 378
Now that's an invitation - throw in some Christmas lights and I'll bring the wine. Maybe we could convince Steve to cook?
Regards JoAnne


JoAnne - Caregiver to husband, cancer rt. tonsil, mets to soft palate, BOT, 7 lymph nodes - T3N2BM0, stage 4. Robotic assisted surgery, radical neck dissection 2/06; 30 IMTX treatments and 4 cycles of cisplatin completed June 06.
#21631 12-13-2006 03:48 PM
Joined: Sep 2006
Posts: 493
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Sep 2006
Posts: 493
MD,

You crack me up. You started the ball rolling with this one and then you try to bail. :p

I'm not living the single life either and I don't miss it one bit. Although I don't remember it much either since I've been married for 19 great years.

On Friday I'm going to see the Christams lights at Wild Adventures in rural Valdosta GA. Somehow I don't think it will compete with NYC, Balt or Philly. But anytime I spend with my wife and son not thinking about cancer is a great time to me.


Tim Stoj
60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
#21632 12-13-2006 07:15 PM
Joined: Oct 2006
Posts: 383
Platinum Member (300+ posts)
OP Offline
Platinum Member (300+ posts)

Joined: Oct 2006
Posts: 383
You all are hilarious!!
Amy & JoAnne, I'd be glad to bring a smoker, grill, and fryer down and we can fix everybody up!! My oldest daughter and her boyfriend bought me a new upright cabinet smoker for my Birthday back in September and feeling so bad at that time it's still boxed up. Now I'm itching to put it together and get "busy" with it!! (been looking at it thinking, something's going in that thing for Christmas. It's going to be in the 50's the rest of this week so assembly is going to be my project. But I think it would work on your deck preparing a feast for all of these rascals! (Of course the tubing and fishing sounds wonderful as well)

It's really cool to hear you all speak of getting out and getting on with life!! I went with Janet tonight to a high school symphony concert that my younger daughter was playing in. The first activity of hers that I've went to in quite a while. It was really a nice concert and there was a gentleman there wearing a shirt with a quote on it that really made me reflect on what we've all endured. The quote was from Ghandi,

"Live as if you were to die tomorrow, Learn as if you were to live forever."

I am sure everyone here can relate! So truly enjoy your family and friends and "get out there and live!!"

Steve


SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!

**** PASSED AWAY 10/8/16 ****

Page 4 of 5 1 2 3 4 5

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5