Hi everone;
I thought I had made an introduction earlier but I was in my profile tonight and did not see it so a little late but here it goes.

I was diagonosed in January with base of tongue/floor of mouth Squamous Cell Cancer after sporting ear aches/and a lesion for several months and two negative biopsies. I was seeing an oral surgeon who would not give up on trying to get me better. Since the biopsies were negative he was treating me for Gland stones which he said sometimes will cause lesions. In January '06 he decided to clean the lesian and stitch it up to get me some relief. He said while he was in there he was taking a couple more deep biopsies "just for insurance". Thank God he was relentless! He had me right back in the office with "the news".
After two opinions that were almost identical I had a neck dissection in February on the right side with removal of 25% of my tongue, floor of mouth, tonsils, and right side saliva glands & lymph nodes. My ENT told me the margins were clear, one was questionable but within a comfort zone for him, and he would suggest no radiation, chemo at that point. (he doesn't seem to be a big advocate of radiation)
Everything went well enough and I recovered very good. Got back to work, was eating very well, basically back to normal.
Then, in between follow up visits I starting getting that familiar soreness and spasms in my tongue again. I went back to my ENT who was very glad I responded immediately. He scheduled me for an outpatient biopsy where he could put me out and really get a good look while taking a biopsy. The biopsy was negative but my ENT wasn't satisfied with that. (another blessing) He referred me to another ENT in the area, who is also an associate professor at our University.
My new ENT scheduled a PET/CT which revealed a new tumor on BOT, now on both sides. He suggested that we proceed with Radiation & Chemo prior to another surgery. (He said that my next surgery would be a "real one" and we should try to resolve this with Radiation and Chemo first)
So just prior to Labor Day I embarked on a journey of 35 IMRT and 3 x Cisplatin. I finished up treatment the third week of October and my doctors seem "positive" thus far with what they see. I recently cancelled a visit with my ENT because I was so sore and "burnt" that I could barely open my mouth. My RO told me there wasn't any use to see my ENT again until he could get a good look in my mouth, plus they meet weekly and discuss all patients. My RO also told me that they would not do another PET/CT until January due to the residual effects of the radiation. I've now lived so many of the things that you all share on this site and it has been great to learn about many of them prior to running up against it.

It is a pleasure to be part of this awesome group of people who have a great amount of courage and compassion to help others.

Steve,

Hang in there and lets hope the chemoradiation did the trick. We were all anxious before our first post Tx scan, especially after the scan and before the results are told to us. I don't know why they just can't call us as soon a they know the results. Why the additional torture?

David, I'm not dead sure about this, but I believe in some states they are not allowed by law to give results over the phone, etc., but only in person.

Pete

Pete,

I'm sure a Doctor/State Representative sponsored that bill!!

Well, what a positive visit with my RO today. He felt very "encouraged" with what he sees and feels thus far. He is also happy that my weight loss has stopped (exactly where I was 3 weeks ago) and very pleased that I'm pushing through the pain to try and experiment with different things to eat. (so far it's a few eggs and soups, but it's a start!! last visit drinking water was still a struggle and he said he wanted to see me immediately if I lost another pound.) He wants me to focus on some exercise such as more walking to build up my stamina. He scheduled me to see my ENT in three weeks for another viewpoint at this time.
I have some new hope this evening!!

Hi Steve,

Well you sound better and that's great. Pretty amazing what a positive visit can do. Completing treatment and making it through that immediate "it's getting worse" period is a huge milestone and I want to welcome you to the other side of recovery. The fact that your weight has stabilized is excellent and you will build up your stamina again. Walking is how Jack started out followed by short bike rides. At first it was just around the block but little by little he increased what he could do and so will you.

In addition to the eggs and soups, try custards, protein mix shakes with ice cream or yougurt, puddings, casseroles, things from a crock pot, souffles, stews, cottage cheese, pureed dinners, and more ice cream. Your body will tell you what works and what doesn't but don't be afraid to experiment. David has found a good high calorie shake that he's pleased with.

Don't forget to keep up with your mouth stretching exercises to prevent trismus. If you already have that the therabyte jaw exerciser works well.

Onward and upward. You have reason for that new hope.

Regards JoAnne

Hi JoAnne;
Thanks for the encouragement & suggestions. You are correct, The eating is all about experimentation. I can eat a few bites of cottage cheese, and I managed a little bit of cereal that softened in milk, but anything else I've tried with milk sets my mouth on fire. (Including Yogurt & Ice Cream - Boo Hoo! Strange, but thankful to be eating so soon) My wife bought me a variety of instant puddings but I haven't gained the nerve yet.

I am not familiar with the therabyte exerciser. Is it an OTC thing or prescribed? My RO did suggest yesterday a speech therapist for mouth exercise and therapy. He said my ENT could set that up as long as I felt OK with it. (I think he could tell that I was kind of like "am I talking that bad?") There again, just a couple weeks ago I was using a dry erase board to communicate??? (how soon we forget) He reassured me that things would continue to loosen up and improve as long as I "exercise" my mouth and continue to eat and swallow frequently, but he feels a therapist could help a lot in my efforts there. (I would entertain comments, feedback about utilizing therapy as it wasn't felt to be needed after my surgery in February)

Yes, you are correct though, the other side of recovery sure helped my attitude today! (Plus, what a feeling to come home yesterday & "high five" the kids) Now to build on that momentum!

Best Wishes to your husband & self.
Thank You,
Steve

If you are having trouble opening your jaws, you do need to begin now to gently force them to open. You can begin by doing it yourself, with "jaw power" and also with your hands. I could not open my mouth wide enough to allow a spoon to pass at first, and my surgeon warned me that I needed to begin to work on it before it become a permanent problem. He ordered the Therabyte (very simple device, but very expensive....covered by insurance when prescribed, but available without prescription--search on the internet for information...They have a website) and until it came in, I worked on opening from time to time all day long.....I still do at one year. Check with your surgeon to be sure that there is not some medical reason to wait for this exercise, but you don't want to wait too long. My surgery was in January also, but I didn't have the radiation that you have had. I see that you express mostly problems with eating because of the radiation and not with trismus, but if you have difficulty physically opening your jaws, then you do need to ask...now...about exercising them.

Take Care.

My favorite when I was trying to eat again: mashed potatoes--plain or with a little gravy!! How wonderful to have something that tasted like FOOD and wasn't sweet like all of the puddings and liquids. Potato soup is wonderful too..very soothing. Someone brought me some black bean soup.....so ugly looking and so absolutely wonderful!!.....I, too, even without radiation, was and still am very sensitive to spicy foods, but the potato and bean dishes were very soothing.

Steve,

I was able to eat Chicken POT PIES when I was about 4 or 5 months out from treatment. The cheap ones, they are small. Keep that in mind when you are able to eat a little more.

I know I was so happy to be able to eat anything. So happy for you as well. I can not eat spicy foods or use pepper.

Take care,
Diane

Steve,

I am 3 months out and I can eat and swallow anything I want. I still can't taste much and I still have that dry mouth thing but I can eat. I started with mashed potatoes, mac & cheese, fruit cocktail and kept trying more challenging things to gain my confidence back. I was sensitive to cold and red sauce initially but nothing bothers me now.

I also found yawning helped stretch my mouth more naturally. I also open my mouth as wide as I can when I think about it and I really don't have any opening problems.

Hang in there, it only gets better now.

Steve,
Glad to hear you're making good progress. Who'd have thought that eating would ever be as daunting as it is post TX?

Like you I had severe limitation opening my mouth. I could barely force the tip of my finger between my teeth.

A good bit of my problem was surgically related since I had 50% of my mandible removed and reconstructed with titanium and fibula. There was a degree of muscle mass lost as well during the tumor removal and rebilding the inside of my mouth.

I asked my dental oncologist about the therabite and he said that while there was potential benefit to using it, patient compliance was a bit of an issue. It's like the stationary bikes we all have in our garage; they really help, all you have to do is use it ;^)

They are expensive, so you really have to be dedicated to making use of it.

I have a relative who is a theraputic massage therapist, and he spent about 45 minutes massaging the jaw hinge, my neck and my shoulder. End result was over 100% improvement in my ability to open my mouth, and with additional treatments it's continued to improve.

I have just started seeing a speech therapist as well, and I think it's a great "next step".

I notice that my speech clarity suffers under very specific circumstances, and the therpaist is confident we can develop coping techniques to eliminate the problem.

Wayne

Thank you all for the feedback and suggestions.

I tried mashed potatoes on Thanksgiving and they didn't work too well (the swallowing thing). That, of course, was then. Things get better daily so I'm up to trying them again. The potato soup sounded like a great option too, and the suggestion of pot pies sounds awesome as well. They're so inexpensive I may have to give that one a try now. (thanks August & Diane)

I will check out the therabyte on line and investigate it further. My wife said she can understand me fine, and friends I see, folks on the phone say they feel I'm speaking well, (I hope they aren't just patronizing me)
My wife says that after I speak for a while I do lisp some and sound as though I've had a mild stroke, so I might pursue the therapist aspect, not only from an eating/excercise angle but speaking as well. It sounds like you find it beneficial Dragan.

It's very strange how all of us have the same, yet different sensations and issues post treatment. We could make a great eating team David! My taste is already coming back some, I just can't swallow, and you can swallow but still can't taste well. I know that you are farther out post treatment than I am but I remember in another post you saying that with the exception of some post treatment swelling and soreness you hardly skipped a beat with being able to eat OK. That's wonderful considering others struggle for many, many months. I feel blessed to be eating what I am right now.

I guess we all have a somewhat similar journey, just with different bumps (and smooth spots) in the road!! Thank you and Bless you all!!

Steve

Steve, here are more "slippery" things to try. Chicken thigh and leg meat in small bites, soft cooked rice in chicken broth, jello made with fruit juices [for extra calories and nutrition] rather than all water, angel hair pasta with non-spicy red sauces[ add ground beef if you can tolerate it] Scrambled eggs [add a little chicken broth to eggs before cooking, add spinach,cooked broccoli and\or a good melt-able cheese during cooking]. Sounds like you are doing pretty well. Amy

Hi Steve, It's funny Jack had a hard time with mashed potatoes too even when he was eating harder things like a hamburger and nachos with melted cheese - go figure. For some reason potatos were like cement in his mouth whether they were baked, mashed, with butter or gravey. It just didn't work for him for 5 months and made absolutely no sense. He also had a problem with pudding and ice cream unless it was in the protein milk shakes. Red sauce took 5 months and spicey is still hard for him.

At 2 months post treatment we did a road trip to Virginia see my nephew compete in the junior olympics. Jack still had his feeding tube but was experimenting with eating so he could get rid of it. We found one of those great all you can eat southern seafood buffets and that was the turning point. There was several rooms of food to try and he had a great time going from dish to dish to see what worked and what didn't. He found crab imperial and oysters rockerfeller worked that night - and would go back and stand at the buffet until they brought out new hot batches of the stuff that he liked.

You're on a roll - go find a buffet.

I think the therabyte was worth it for Jack, we got a prescription so it was covered by our insurance. You do need to make it part of your daily routine or it's useless, David is right about that. Jack went to a speech therapist following treatment and also found that helpful. His speech was very good but as he got tired that lisp thing was there. People who didn't know his voice extremely well would not have noticed but it bothered him. There are exercises that will improve your swallowing as well as your speech so it's worth a consult. The muscles in your mouth need exercise just like an arm or leg, and it's the type of thing you can learn and do yourself. Considering everything you've just gone through, the rehab is the good part. It makes you feel like you're doing something positive and you see results.

Regards JoAnne
PS ...and we got to see my nephew win a gold medal so it really was a good trip

Thanks for the tips Amy & JoAnne.

The Juicy Jell-O sounds excellent and since eggs are working I'll have to try them scrambled with some broth. A seafood buffet (along with the road trip to Virginia) sounds like a plan. I love seafood and our oldest son is in Virginia Beach, VA, so that entire suggestion works great. (He's in the Navy and stationed in Norfolk)
Great reason to see the Grandkids as soon as the doctor visits slow down! (hopefully the first of the year!) We would have to do it around the two younger children being out of school though, or else con their older sister, who just moved back to the area, (after her stint in the Marines-talk about ultimate sibling rivalry!!! LOL) into staying with them for a few days.

The more I hear about the benefits of a speech therapist the more positive I'm feeling about considering it. And JoAnne, like Jack, I'm probably more conscious about my speech than anyone else is, so it would probably help me mentally as well.

Thanks All. Best Regards,

Steve

Just a couple of food suggestions that worked well wih my son who also loves seafood: 1) crab salad with thinkly sliced and chopped celery and onion (or onion powder) and lots and lots of mayonnaise with tiny sea shell noodles. My son likes the fake crab but I've combined fake and real crab also. 2) Potato soup recipe that I got from a chef at a well known restaurant: Chop a peeled potato in very small cubes and cook with chopped onion in water until the potatoes are very soft and water has boiled almost away. Mix a can of cream of chicken soup (1/2 can) with a little cream or milk and then strain the chicken out. Add soup/milk mixture to potato. Stir and add more milk or cream until soup is at desired consistency. Serve in a cute bowl and sprinkle grated cheese on top. The chef I got this from also garnishes top with chopped green onion and bacon bits but I leave this off for my son.

Hi Steve,

What a coincidence the buffet I'm talking about is in Virginia Beach. It's the oldest and biggest one down there so I'm sure your son knows it. There's a big antique dive suit and stained glass on the ceiling. My 13 year old nephew thought it was awesome.

You're right that going for speech therapy can give a mental boost, that's exactly what happened with Jack. He didn't need too much but enough to establish a home exercise program and feel like he was taking control of the situation.

Jack said to tell you that speech therapy made him more aware of the functions of the inside of his mouth and how doing certain things changed his ability to speak and eat. Same with the therabyte.

Before the diagnosis and surgery he never thought about how the tongue or soft palate worked, just something he took for granted. This helped him understand what he was dealing with. I think he also needed something to be motivated about once the treatments ended. You go from all this intense activity to waiting around to see if it worked and that made him nuts.

Onward and upward. We ran into someone we haven't seen since June and they commented on how much better his speech sounded. Those are the moments that keep you going.

Regards JoAnne

Thanks JoAnne for the insight. I'll have to ask my son about the buffet next time we talk. He loves seafood as well so I'm sure he has probably heard of it or eaten there. He's been on two different subs ported there on two seperate occasions. We've visited a few restaurants/buffets when down there, but I don't recall visiting one like you are describing. Both my son & I love to cook (a curse for me right now!!) so we grill/cook at their home a lot when we visit, otherwise we would have probably uncovered it. We will search it out next trip. (which hopefully will be soon)

Jack is so right concerning taking the workings inside the mouth for granted. (Oh, the small stuff we overlook!) I appreciate the insight and am going to talk to my ENT about therapy this coming visit in a couple of weeks.

Ann-Marie, I'll have to give the crab salad a shot very soon. I think I'll wait a while on the Potato Soup though. The reason being a few weeks ago I gave some cream of Chicken soup a shot. The milk in it really burnt and stung! Well, I got brave last night and since things change daily I decided to give some cream of potato soup a shot. I did get about a cup of it down before the burn got to be too much!! It's weird how things react differently. I can handle small amounts of cereal (in milk) but not things like the cream soups. Speaking of seafood I actually just had some cheesy tuna helper!!! Woohoo!! Most folks would not really view that as seafood but I'll take it.. LOL

Thank you all,

Steve

Hi Steve,

Absolutely cheesy tuna helper counts as seafood, and if you can eat it then it's gourmet. The name of that buffet is Captain George's. That's a big Navy area, we went to the maritime museum down there and there were a lot of ships in port. Very impressive place. Is your son also a diver by any chance?

You'll get back on that grill sooner than you think. Jack is the cook in our family and those were dark days when we were relying on me for food. You know it's bad when he'd rather do tube feedings. Tonight we are eating a nice beef stew that Jack made in the crock pot and it does feel like we're getting back to normal.

By the way, the Easy to swallow, easy to chew cookbook on the products link of our website has some good ideas if you're interested. It's on the home page.

This too shall pass.
Regards JoAnne

Hello JoAnne;
For some reason that name sounds so familiar. We went for a commissioning of the USS Cheyenne during Thomas' first stint down there (about 10 years ago) and all went to a nice buffet by the Port, but I don't recall the name. It was excellent though!! He'll be calling towards the end of the week and I'll have to ask if that was it. He is not a diver but a torpedoman. After leaving the Cheyenne (it's currently docked, standard for a sub after the first few years out) he went back to school in San Diego, then Hawaii, then he went to work in the actual torpedo facility in Williamsburg, then all the way back to Seattle, where he was asked to join the USS Georgia (another sub). So now back to Norfolk!! You are correct, it's awesome down there.

I'm in the same boat as Jack, head chef for the house. The poor kids had a lot fast food during my treatment, not that Janet isn't an excellent cook, but bless her heart, working, caring for my needs, hauling me to all those appointments, being there every step of the way, and taking care of the house and the kids, left no time for her. I don't know how she done it all! Yes, she cooked some, but not like we normally do. So I can't wait to get back into it. I actually got up this morning before they did and made some Strawberry muffins for their breakfast. Everyone enjoyed them!! I even tackled one after everyone got going today. The first few bites (micro bites) I really got some flavor and then my taste buds lost it, but it was great. Took an extrodinary amount of water to work it down but well worth it.

Thank you for the suggestion on the book. I had found that book on Amazon when I first started attempting to eat again a couple weeks ago. Janet went out searching for it at the bookstores but nobody actually stocks it. I have been paranoid to order it without seeing it, thinking it was probably just basic soups, etc. Also, thanks to you mentioning it I went into the OCF links and explored some more this morning. Found a whole world of unexplored territory!!! What a website here!!

Regards,

Steve

Hi Steve,

I'm glad you went exploring on the links on this website, it's quite an amazing wealth of information. We ordered that book through the products page link here and it came fairly quickly. Not too expensive, under $20 as I recall. I'm viewing it as a procedure manual for the cooking challenged, but there are also good tips to improve swallowing in general so it's been helpful. There's a nice variety of recipes in there other than soups.

Those little bites of muffin are big victories, and I'll bet it did taste good. Jack's speech therapist encouraged him to experiment - mind you that was after the video swallowing test that determined where the food was going and that it was safe - but he really took that advice to heart. The first time he hacked up something that didn't quite make it was a little scary but you get over that. He still "repositions" his food as needed but less and less. Small bites, small meals, lots of water, it's all part of the recovery process.

Your son has had quite a career and you're clearly very proud of all your kids. They're wonderful motivation to get through this aren't they. You sound like you're doing well, hang in there and good luck with the ENT visit in a couple of weeks. There's a lot to be said for a positive attitude. I believe that continues to help Jack.

Regards JoAnne

I also suggest you don't give up on something if you choke on it in the first couple of swallows. I found that if I coughed it up and then went back tried again, I could often eat it. Like my muscles were saying 'oh, now I know what to do with it'. As Joanne say, very small bites and lots of water or milk or any other liquid like apple juice that you can drink. I also found applesauce helped get many things down. Keep trying, it does come back.

Take care,
Eileen

Diane;
I got brave tonight and tried your suggestion of the chicken pot pie. I baked two of them. Janet asked why I was fixing two and I told her that I was going to prepare them and then have one for later, as I didn't want to microwave one later due to the crust not baking. Then I grinned and said, "like I can swallow that crust anyway." We laughed about that!! Well, the crust did not work, but glad I fixed two of them. There was a little discomfort (a small price to pay) but I ate both of them!! (with plenty of water of course) Another wonderful victory!!!

Thank you all so much for the "experiments" and advice. It is sincerely appreciated.

Steve

Steve, I don't think I could eat anything by mouth for about a yr or so but yesterday I faced my biggest challenge. (A peanut butter and Marshmellow fluff sandwich) I was determined that it was going down. Thanks to a half gallon of milk the mission was a success. Good Luck to you!!!
Mark D.

Steve, I find that anything in a casserole with cheese works well.

Try angelhair pasta with a tomato\spinach sauce [+ground beef if you can tolerate it or pureed tuna or shrimp] Amy

Way to go Mark with your "mission" on the "fluffer nutter" sandwich. It's amazing the things we used to take for granted are now milestones!! Yes, minniea, it seems that any noodle base (as long as they're small or chopped up fine) goes down pretty fair at this point, even with cheese. I still get some burn, even with lots of water, but as JoAnne, Eileen and others have mentioned to me it's all about positioning and taking proper amounts.

JAM, the angel hair pasta is working. Janet (my wife) actually made some the other night. She sat a seperate bowl aside just plain in case I couldn't handle the red sauce (even though it was really mild with very little spices added). I got through it!!! That was a victory due to the red sauce. Most tomato or acid bases are still very irritating and flare up the sores still in my mouth. (all trial and error at this point) Man it was a great feeling.

Now, for the biigest step yet!! I actually bought into having Mcdonalds with the kids tonight!! Janet said she was treating them tonight and asked if I wanted to try something. (during week 3 of radiation I ate there about every meal as it was the only thing I was getting flavor out of) So I gave it a whirl. Well after about 7 or 8 fries my son ended up with them, and the family was done eating long (about an hour) before I was (naturally), but I thoroughly enjoyed a double cheesburger!!! With the exception of about a third of the bun I broke that thing up in little pieces and had a blast with it!!

I feel real positive and blessed that so many things are working for me at this point. It sometimes is a challenge mentally due to the amount of time involved and the amount of water needed to have a meal but it's a small price to pay to still be able to eat!! I'm still struggling with getting enough calories by mouth though. It feels like I need to eat from the time I wake up until I go to bed and it's still not enough, so I'm still using the tube some. Does/did anyone else feel this way?

Thanks,

Steve

Steve, I'm so happy to see you doing so well. I think it is fantastic that so many people on this site are less than a year out of treatment. You can offer each other so much assistance and support. People reaching out to help one another is amazing and to go thru what oral cancer survivors have to go thru is so hard on your own. Thanks to Brian we have created a wonderful little family here. There is one member that I think needs our help right now, It is Tim Stoj-- First he thought he was going to die and now he thinks he's a handsome ladies man! Well tim if your doctor prescribed you some anti- depressants do me a favor and give me that prescription!!!!
Steve keep posting enjoying your input. By the way even after 7 yrs I still have to force myself to drink 3 or 4 ensures to maintain my robust 160 lb. frame.
Mark D.

Hey JoAnne;
We talked to our son a while ago and he had it out before I finished the question! It was Captain Georges that we ate at our very first visit down there. I remember the food much better than the ambiance but you and Jack are right, the food was very good. It will be worth another visit on our next trip down there. Thanks for reminding me of it.

Mark, the comment about your daily ensure intake is something I'm beginning to relate to. It just seems like a true challenge to get enough by oral intake alone. Sounds like that can continue to be an issue. Thank you for the reply and insight.

Steve

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

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

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

Dear Steve, Are you available to cook for the rest of us . We can book in advance. Amy

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.

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

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. Amy

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

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.

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

Good quote, I'll try to remember that one. Mark is hilarious for sure. Have fun puting that smoke together.

Keep Smiling
Tim Stoj

Amy and Joanne your invitation is very seductive, and I don't think I could keep up with you two before my cancer dx. I believe exhaustion will get your hubbys before any disease does.I'll compromise with you and still take Minniea to the hoop game and will meet you guys on Amy's deck for drinks after. Tim, I'm so glad your doing so well,I used to sit with my Dad and watch all the old shows and I miss those days.

Steve, how big is the smoker? I'd like to propose, ribs, a fresh pork shoulder, brisket and the obligatory turkey. My deck is big enough for a bunch of people. Mark- you are going to have to do or say something really clever to get back in my good graces "A woman scorned"-well you know the rest. Amy

It's a 34"X16"X14" upright, dual fuel. I think it can handle your order. If not I can always pack the barrel smoker in the back of the truck!! I never got into that assembly project today. My son had a Dr. appointment this morning so Janet and I went to that with him, then he and I hung out the rest of the day.

He talked me into testing new waters today. He wanted to go to CiCi's Pizza for lunch. Out to eat??? "Not sure, haven't done that in months. What if I get the choking or a sneezing spell?" "Well, OK, I'm game." I figured that I could eat some pasta, but he pushed me some and guess what; I had PIZZA!!!!! Not just a litlle bit, but a lot, almost 4 slices!! (Jo Anne you called it, search out the buffets!!) It worked, I ate, I even swallowed a few bites without watering it down! Then we Christmas shopped and goofed off together the rest of the day. It was so much fun. The minute I sat down tonight, BAM, out like a light. So tomorrow it's going to be another nice day and the Smoke Hollow No.9 is getting unpacked.

Happy Trails,

Steve

Good on you, glad you had a great day.

Steve, I'm the simple type a Hot Dog would be great for me. The only bad part is I can't open my mouth
wide enough to bite the roll. (Amy can be difficult but I have to say somrthing clever to get back in her good graces) Science Vs. Emotion

Amy forgot that I fall under the side of Emotion so it may take some time for me to say something clever.

Yeah, plus the bun would be like trying to swallow a large wad of cotton even if we got it past the mouth. LOL

However, the hot dog sounds very tasty!!! I guess we could do like the professional contestants you see on TV. Dunk the buns in cups of water first. HA HA

Steve

actually you can cut up hot dogs into little pieces or take the top off the bun to eat it. They're moist so it works. I think that's how Jack started, he loves hot dogs and was determined to work around the trismus. Now he can eat them with no problem. Street carts with hot dogs is a big NYC thing. Of course dunking in the cup of water works too but it's very Coney Island Hot Dog Eating Contest. Steve, pizza and quality time with your son? Not too shabby.

Regards JoAnne

Hey JoAnne;
Guess what I fixed the kids for dinner tonight? You got it-Hot Dogs (Coneys) & fries!!!

Q2: Guess what Steve had for dinner? ding/ding!! Cut up hot dogs!!! Yummy. (no nerve to even attempt the buns) You are absolutely on it. They were very moist and fairly easy to maneuver, plus a huge amount of calories even without the bun.

Mark, I thank you for the mention of hot dogs!

PS: Yes, Thursday was really great. I woke up expecting a mediocre type of day. (My Mother passed away on December 14, 14 years ago) Spending the day with Darrell was a huge plus.
A lot of the pizza at CiCi's Buffet is very thin with a soft crust, and the ones I selected had little to no tomato products so it really helped with swallowing and not breaking out my mouth too much. If you do find something that you like, or works well, they have no problem making pizzas by request. They are located in about half of the U.S.

I must say that the "quality time" outweighed the pizza by a mile! Thank God for the enjoyment of Family (and friends)!!

Steve