Update on treatments, etc, and a couple of questions.

Almost 4 weeks into the radiation, and for some reason, luckily, other than the old dry mouth and some mucositis, and hair falling out on the right side of my neck, tightness of the neck muscles, and a sore shoulder still from the surgery, no major side effects. Yet. Still getting the feeling of pressure around my neck, but each day its' less and less, so hoping in a few weeks that will be done with. Massaging and stretching my neck muscles a little each day trying to work this out. Anyone have any suggestions? A couple of times I've been in bed and tried to adjust my t-shirt thinking it is binding around my neck, then realized I wasn't wearing a t-shirt. I hate when that happens.

Did start out doing Cisplatin for chemo, but after 3 rounds had to quit, would get ringing in the ears from just slight to "baby that was a real attention getter". Oncologist had thought the chemo was strictly optional this time because of the small amount of tumor involvement, cut of the chemo post haste. Also asked if I had anything like the tingly nerves in the legs when I moved my head (dont' remember the name he used, but we know what he's talking about). Seemed aggravated when I told him yes, since last Christmas from the first go around with all this. I get the feeling he definately would not have started chemo again if he had known that previously.

Also, he's decided that probably I only need about 5300GY instead of the 6000, again because of the small amount of tumor involvement.

So, feeling pretty positive at this point. For some reason, I have this feeling deep down that this will be the last I've heard of this, other than check ups, etc. I really didn't feel this way after the first go around, like I was fully expecting the cancer to reappear someplace. I know if it does reappear again, I'll be totally devestated but also have the feeling it will be so far metasticised that my goose will be cooked anyway there won't be much to do except get on with it.

My poor wife has been handling all this very well, from having to deal with visa nonsense to be with me in H.K. for treatment, to just dealing with me. She gets angry because I don't eat big meals, and has a hard time understanding the hassle of the dry mouth part, but I know it's because she cares that she hollers at me about it. When we started the process for getting married everything was ok, but during the 4 weeks it took for the marriage bureau to get the paperwork done and issue the certificates, things kind of went to heck and I wound up with this recurrence. I give her a lot of credit for sticking with me.

Thankfully, will be done with this in a week and a half, and can get back home to finsh moving into the new apartment and get settled again. If there's no major issues, planning to get back to work in mid June for half days. Probably the worse thing for me is the sitting around most of the day, or trying to keep myself occupied. With 2 a day treatments, the lull time between the two is the toughest. Only so much walking around Hong Kong one can do, and with a shot immune system, and SARS scare here on top of that, a lot of wanderingt around isn't all that smart to begin with. Besides, then one starts to impulse buy (yes, retail therapy) and does one really need a Gucci PDA cover? Even if it is copy Gucci?

My mental state this time has gone from real high to real low, corrsponding with my energy level. I know it's still another several months of recovery, using the rule of one month for every week of radiatin, I wasn't due to really get over the first time until June or July, and her it is May and I've done another 6 weeks of treatment. It will be December, if I'm lucky, before the strangeness gets done with. From my last experience, I now know I need to pace myself, rest before I get tired, and try and keep my mental attitude in proper mode.

Question for the more athletic folks here. One of the unfortunate side affects of all this is I've lost the beer gut and the love handles, I kind of look like the folks that have managed to stay to the end of "Survivor" kind of droopy fleshed, not a heck of a lot of muscle tone, etc. The new task will be also to try and get back in shape, which to me is a tricky proposition since the idea is to put on weight and get some decent excersize, but not so much that you burn all the calories you take in, which is limited because I suppose for a while at least I'm still going to not be able to eat a whole lot because of the dry mouth etc. Any good suggestions, thoughts or book suggestions? Not on a PEG tube, and my normal diet consists mostly of Cantonese food, (lots of veggies, lean meat, soup, rice or noodles) or Korean food. Ensure isn't available normally, as well as most "western" foods. Any suggestions would be appreciated.

Thanks for your support everyone, I guess today I'm in a good mood, weather is nice and will be heading out for more "retail therapy" later, as well as a search for dinner. For those who are just going into treatment that read this, you are going to have down days, up days, but at the end of it all it does get better, and I think recovery is as much mental as physical. Dont' give up.
Bob

Hey Bob-
I am new here, get my diagnosis today, and I am SO HAPPY for you!!! I hope everyone here's stories lead to the path that yours has taken. Sounds like you are making the best of your situation, despite being so far from "home" and doing quite well. I commend your positive attitude and I hope I can keep one as well, assuming I will be on this journey before too long!
Desiree'

Bob,
I am impressed that you are doing so well. Tell your wife to chill on pressing you to eat. Eating is still a big challenge for me 8 months after radiation ended. Last night I went out with a friend and his girlfriend and her sister, who they wanted me to meet. It was her birthday. We started at one steak house, where they drank and I ate a bowl of soup. Then, at my suggestion we went to the Palm...we had a table full of steak and lobster...I just sat there, talked, drank water, and enjoyed the evening while they ate all that lobster and steak. The funny part is that I don't even miss that stuff...it does not look very appetizing to me at this point, probably because I know that I cannot eat any of it.
If it wasn't for the Boost and Ensure I would wither away.
Your attitude sounds great. Keep doing well.

Danny G.

Desiree, hope everything goes well for you. Just try and remember to keep a positive attitude. I know that's difficult when it seems the world is crashing down, but at the end of the day we just have to pick ourselves up and crunch along.

Danny, I know what you mean about not even missing some of the foods. My favorite foods used to be pizza, or pretty greasy cheeseburgers and fries. (White Castle preferably) Now there's absolutely no interest. Ok, I do miss the White Castles, but other wise I don't feel like I'm missing much.
Bob

Bob, it is so nice to hear from you, and overall it sounds as if you are doing spectactuarly well. Thanks for saying you do not wander around Hong Kong. Every single time SARS comes on the news I worry about you! As far was getting back in shape, I recommend weight training, beginning slowly of course. I also ran, starting out slowly and in a foolish moment bought one of those scales that measures body fat percentage. I can see I have made good progress increasing muscle mass. When you describe not even being interested in what you cannot eat I understand completely. I thought it was strange at the time that I could sit and watch others eat things I had previously loved. All back to normal now. Found out that even an occasional small glass of wine is a do-it-youself dry mouth kit, but had a beer yesterday that tasted great and didn't dry me out. So perhaps you can look forward to that down the line. I am SO glad you discontinued Cisplatin. I did too, and my hearing is altered -- seems more accute and some things bother me as being too loud. Just another small price to pay for being cured, and greatly preferable to being deaf as a post (grin). Hang in there. Your attitude is good and you seem to on the fast track back to good health.
Joanna

Edit. Oops! That is you, Danny, who is not interested in the food. Have been told that there is still chemo in my system this far out, so I will use that all-purpose excuse of chemo brain. Going to have to find something else when that is no longer available to me.

Bob,

Since you are in China / Hong Kong maybe you will be interested in trying some Chinese medicine to help you recover.

http://www.taoistsanctuary.org/pages/Chinese%20Herbal%20Medicine/cancer.htm

Joanna,
I failed to mention that I even tried a drink last night...a Cosmopolitan. I expected the vodka to really burn. I was only able to drink a few sips but I was surprised that the alcohol did not burn too badly. Next I want to try beer.

Danny G.

Sounds like you are doing great Bob!

As to the foods issue, one of the things I promised myself was a king cut prime rib just as soon as the pain subsided. Lucky me, my friends called me up and said "we're going" They took me 40 miles to a place with superb beef. That was a great time. For some reason beef medium rare (or rarer) doesn't need much salivia to be consumed!

Let me know if you want me to dryice pack some beef and ship it over.

Tell your wife I think she is great, I thank her.

On the excersise thing, I am not your jock type but I find that streching (yoga maybe) and normal walking (at first) worked pretty well at keeping things in shape. I think an occaisional hard make you sweat kind of thing is ok (like splitting 2 cords of firewood or digging a canal or something), But I would not try much while your food intake is limited. Also make sure you are getting a lot of protein in your food. Your body is having to replace all the good cells in the radiated area at a tremendous rate and it will need lots of protein. (see the beef comment above)

Lastly no one has commented on my blender foods yet and I'm not sure why...I know you can make several thousand calories complete with high protein (lower sugar) and taste a lot better than ensure fit it into a mug and get it past your sore throat pretty easily. It ain't low fat either. Let me know if you have a blender and if you are interested in how to do it.

Take care

Ditto Mark,
The first meat I ate was a filet mignon cooked very rare. I had to cut it into small pieces but was it tasty! It's a funny thing about the taste buds also. Natural flavors seem to work most of the time but processed food still doesn't taste very well. I am kind of surprised that after only 50 days, I can taste most things already. Chicken seems to be the worst - it might start out moist but after chewing it it goes down like sandpaper. Pasta's work really well for me - I can usuually swallow it without sipping water with it. The trick is small bites and small swallows. If I take too big of a bite it tears up the side of my throat where the tumor was. You have to be creative when you don't use a feeding tube.

Been in transit so haven't had a chance to answer.

Found the same thing Gary, Mark, about the not too well done beef, can deal with it fairly well. Something I found out last week was I was able to deal with lamb chops, apparently just fatty enough to have some decent moisture in them. Last time I had lamb was umpteen years ago and didn't care for it. Guess tastes have changed. Also goose or duck is good, kind of oily for some people but if it's cooked well it's pretty tasty. A few weeks ago went out to a restaurant with friends for what we call "rubber ducky" basically smoked duck. Between that and the Guiness to help wash it down, seemed like heaven. Have gotten a craving for chilli dogs for some reason lately. The chilli's not too hard to come by here, but a decent hot dog is-go figure. As far as processed foods, it's been so long since I"ve eaten anything out of a can, frozen food or jar that on the rare occasion that I have, it tastes like the packaging it came in.

WZ I checked the website on the Chinese herbal medicine, going to have to print out the article. Was in a Chines drugstore today, you wouldn't EVEN believe some of the critters they had in there in addition to the more commercially available products. Luckily they were dried and not still on the hoof. As it is, my wife makes some sort of soup out of a certain type of mushroom that goes give a good energy boost. Kind of an aquired taste, but ok once you get used to it. I'll have to get the recipie and post it.

This time around luckily I"m got getting any radiation to any area of the mouth, so no sore mouth, just very dry. One and a half weeks left, and feel pretty good, if not tiring easily.
Thanks for your thougths.
Bob