diagnosed with lymphoma

[vicente solano]

Ratface: Just because I don´t know what else to say to show you my support -plenty of eloquent members already, thank God, are doing that marvellously- doesn´t mean that I don´t think about your predicament and the valiant way you are handling it. Have a good night.

 

[citrine]

Earplugs and Green Tea ice-cream......you are going to be fine
I hope you have a great day ((hugs))

 

[ratface]

It's been a bad week. The driving of DS to college was too much too soon and just took all my energy. Today thursday I have some energy. One more day before the weekend, Thank- God. I'm surviving on soaked cereal, icecream, shakes, and jello. Everything taste so bad. I hope to eat real food again some day.

 

[Dawg52]

It's been a bad week. The driving of DS to college was too much too soon and just took all my energy. Today thursday I have some energy. One more day before the weekend, Thank- God. I'm surviving on soaked cereal, icecream, shakes, and jello. Everything taste so bad. I hope to eat real food again some day.

You will and you will appreciate it more than ever. Better days are ahead.

 

[bbbamI]

Try anything that you think won't hurt your mouth. Even if you didn't like something before, maybe it will taste good to you now.

Rest and play when you feel the need. Listen to your body.

You will eat real food again....

 

[FinallyRetired]

It's been a bad week. The driving of DS to college was too much too soon and just took all my energy. Today thursday I have some energy. One more day before the weekend, Thank- God. I'm surviving on soaked cereal, icecream, shakes, and jello. Everything taste so bad. I hope to eat real food again some day.

I'm surprised you had the energy to drive him to college. I don't think I have that much energy yet. I know it must have been super hard for you, but I'm glad you did something like that to get your mind off the treatments at least for a little while -- and to do something good for your son.

Just think how good a hamburger will taste at some point in the future.

 

[Janet H]

A few years ago I helped out a friend during a similar treatment course. Here were some his favorites (although now he won't go near most of them). The last was his fave and one of the few 'not sweet' things he ate regularly. You could cut the recipe pretty easily making a cup of white sauce and 2 eggs.

• oatmeal - the real stuff with diced apples cooked in.

• tapico pudding (the real stuff). Watch the pudding packs - there is a lot of salt in some flavors

• Banana shakes with real bananas. In a blender: 1 whole frozen banana, a few ice cubes, vanilla, milk. A touch of sugar or honey.

• Rice with cheese sauce

• Rice with creamed eggs on top

 

[freebird5825]

You can get through this. Keep your eye on that sunrise.

 

[Amethyst]

Banana shakes with real bananas. In a blender: 1 whole frozen banana, a few ice cubes, vanilla, milk. A touch of sugar or honey.

Hey Ratface,

Maybe if that other guy said beer tasted like bananas to him, your banana milkshake will taste like beer! Worth a try, anyway!
Another thing, when I was a teenager I went through a phase where I made myself a banana milkshake every day. I quit when I noticed all my clothes were getting tight...that stuff puts weight on like nobody's business. So, get busy with the bananas and the blender...you need the calories. Maybe add some chocolate sauce!

Rooting for you, and thinking of you every day.

Amethyst

 

[ratface]

The problem with food choices is that you need to be aware of where your digestive tract is headed. I take so many meds for so many side effects that some cause constipation. Eating bananas and rice could really be counter productive at times. Pain meds are notorious for this. I limit those as much as possible. Am rebounding nicely this weekend with the energy levels and just plan to eat, rest, and possibly make it to the library. And yes I have to get chocolates for the Radiation crew which has been great to me. It seems everytime I come in the machine malfunctions and they joke about magnets in my pockets. If they only new??

 

[bbbamI]

Uh oh...sounds like you might need some prunes.....

I'm so tickled you're feeling better this weekend.

 

[vicente solano]

Ratface: Have the docs given you an estimate of how long will lyour ordeal take and when you´ll be your usual self?

 

[freebird5825]

...Am rebounding nicely this weekend with the energy levels and just plan to eat, rest, and possibly make it to the library. And yes I have to get chocolates for the Radiation crew which has been great to me.

Sounds like you're evening out a bit.
Good plan for the crew - chocolate is indeed the universal TY currency.

 

[SarahW]

Ratface--try some baby foods, especially the fruits...applesauce, prunes, peaches. Those should be easy to swallow. Hope you feel better soon.

 

[ratface]

The baby foods might be a good choice but I draw the line at diapers. I'm still able to swallow and am forcing even awful tasting stuff down. Loosing ten pounds in a week will make you at least try and eat something.

Vincente the game plan from this point forward is to finish the chemo and radiation. I'm halfway there. 4 weeks down. Stay out of the hospital with complications as malnutrition or infection due to poor white blood counts. Maintain some reasonable amount of weight and keep the swallowing reflex and saliva somewhat flowing. The jaw has to keep moving otherwise a condition I think called trismus occurs which is like lockjaw. There is also a condition called thrush which can cause problems in the throat. I also have to keep the radiation burns under control around the neck as it is starting to look reddish. If the swine flu dosen't get me then we wait I think 9 weeks for the radiation and chemo to clear out. They tell me radiation keeps on giving after the last treatment for weeks. These are rumored to be the worst weeks of all, the last 2-3 post treatment. We then do another pet scan and look for cancer. If it's still there the options begin to get worse. Possible neck disection or tongue resection. I anticipate a neck disection to remove lymph nodes that may have traces of cancer. Anyone know who the best neck disection guy/girl in the US might be?

 

[mews]

Keep going, ratface!

about your jaw - can you chew gum? that might help even if you are drinking/half-drinking most of your food.

If no gum allowed:

I used to work with a guy who chewed rubberbands as a nervous habit - For medical reasons, I'd let you do it without shrieking and running from the room. (For medical reasons only, ok? )

good luck,
mew

 

[SarahW]

...the game plan from this point forward is to finish the chemo and radiation. I'm halfway there. 4 weeks down.

Yay! Halfway there sounds encouraging, at least from where I'm sitting. I hope the second half of treatment goes swiftly and you can put all this behind you.

 

[bbbamI]

I wish I knew the perfect doctor for you, but I don't. I assume you would want someone in the area where you live. Perhaps investigating surgeons in your area will give you conviction...adding strength to your resolve.

A heartfelt hug from TX to you....

 

[Bestwifeever]

Ratty, don't cross the need-a-surgeon bridge until you come to it--with God's grace you might not need to even come near that bridge.

I'm glad you're finding things to eat and keeping that jaw working out, too.

 

[ratface]

The neck disection is fairly common practice with head and neck cancer. There are also variations of it as to how much is disected and disturbed. My ENT said it was routinely done on everyone years ago before beginning the radiation and chemo. He also said they used to pull all of your teeth. My ENT has been the only one taking a wait and see attitude which I commend comming from the surgeon. The RAD Oncologist and Chemo Oncologist keep bringing it up as a posibilty down the line. I have a lot of time on my hands and it's a good oppurtunity to research alternatives and drive myself insane. One of the most recurrent themes I keep hearing from cancer patients is to take a very active role in your own treatment options as there is so much variation in practice and you only really get one shot at it. Since My cancer is already in the Lymphatic system and we know it's traveling in the "stream", just not how far down stream it's gotten? The theory here is that my neck has two sides and only one side to date is under control of the beast. We simply remove all the water from one fork in the stream and use the other side. It is not uncommon to get 30-50 nodes removed from your neck and have them all come back negative. I've committed myself to the initial treatment at this facility but will travel anywhere in the country for a good surgeon if need be. I want someone who has done a few of these, it involves cutting nerves and removing the jugular vein on that side.

Actually MD Anderson in Texas is the world renowned Head and Neck Facility in the world. Sloan Kettering is also top notch. One day you clean out the gutters and the next you plan on having your tongue removed.

 

[Dawg52]

God Bless you man. I don't have any advice other than to say just follow your doc's plan. Take one step at a time. I know you want to plan and look at every possible turn you may have to take, but don't let it drive you nuts.

Hang in there and think good thoughts.

 

[Sue J]

Sending another {{{HUG}}}

 

[ratface]

And week number five comes to an end. Swallowing has become very painful but really no other complaints. The neck radiation burns are also beginning to be bothersome. Because of the holiday weekend I get to skip radiation on Monday and then my third round of cisplatin a week from today. Doctors all seem very pleased with the progress to date. Everyone have a great and safe holiday.

 

[REWahoo]

Ratface, thanks for keeping us in the loop on your progress. Five weeks of treatments behind you and the doctors are pleased with your progress. That must sound pretty good to you.

All the best.

 

[smileydog]

Ratface, Keep up the good work! Sounds like you are doing all the right things. All the prayers and support from your friends on this board can't hurt either. Soon all this will be behind you!

Your courage and perseverance is inspiring!

Hang in there!