The last four weeks have been difficult. Although everyone said the end of the radiation treatments isn

HiJack,
That sounds very similar to my experience. I wouldn't be too hasty to get off the pain meds. I was on them for a good 2-3 months post treatment. Even in post Tx, pain management is a major component of recovery. I has been proven scientifically to improve healing. Make sure that Eric is managing the constipation issues carefully.

My expectations were the same as Eric's post Tx and the outcome was the same also. One must have patience as the healing process post Tx is VERRRY slow. Measured in 3 week increments I was told and that was about right.

I was constantly experimenting with foods and my wife was very gracious in buying a lot of food that ended up in the garbage. I would get urges for certain foods and then couldn't eat it. Keep experimenting - many of those foods be ok again eventually. The only thing I still have difficulty with are overcooked meats and breads. The dogs are still getting the pizza crusts these days. I don't do well with dry things in general. I can do chips if I have dip with it, bread with olive oil (and balsamic vinegar of course) or lots of butter.

Pasta's are the easiest to swallow. Cream sauces seem to work better that tomato sauces (at least in the beginning while my throat was sensitive to acids). Watch the food temperature early on -lukewarm is best.

I have to laugh at the folks who post how good they feel after a week of radiation. Are they going to be in for a big surprise or what (and humbling experience) in the very near future!?!?

I can say that now because I am over 6 months post treatment. I still have some off days. There are still some minor effects from the radiation.

He should actually start feeling a small amount of improvement in the next few weeks.

Jack,

Thank you for updating us on Eric...it's good to hear that he has overcome some of the side effects of cancer and the treatment.

There are times when he won't even realize he's better because some things are in small increments. You know I am 20 months out from radiation and I still experiment with foods. We just realized the other day that my saliva varies daily. (maybe it's just me) I can eat something one day and we go buy more, then "wam" can't eat it the next. (the dogs love it)

Anyway, you please don't be a starnger. You have valuable advise and encouradgement to offer other caregivers and patients.

Dinah

Gary thanks for the feedback and encouragement.

Dinah Thanks! I haven't meant to be a stranger, I have been sort of overwhelmed with work and life and I seem to go through periods where I hate the damn computer. It is great to see everyones posts and I will keep contributing both as a participant and financially. This board is one of the best uses I have ever seen for the internet. I have given the web address to several other cancer patients I met and all have benefited.

Today I took Eric for a 3 hour drive. It was in the high 70's (great for the Pacific Northwest in Autumn) and we had a nice time. The trip started with him stating, "I wish I had never gone through radiation," and ended with him in a good mood.

The turning points was when we got out of the car and walked through a wheat field next to the Puget Sound. Without noticing both of us stepped in dog poop. When we realized it, it was no big deal. Eric sat on a rock and spent ten minutes cleaning his shoe. When he was done he was oddly satisified. I think successfully completing such a mundane, everyday, vital talk was great for his psyche. From then on he was in a better mood. I didn't know that dog poop could accomplish that, but then I am learning new things about cancer recovery all the time!

Talk to you all later,

Jack

Last week really had highs and lows. One of the things I hate about cancer is it has a way of creeping in the back door right after you think things are going well. In AA they refer to alcohol as "cunning, baffling and powerful." I think that is just as true of cancer.

Monday and Tuesday Eric was as emotionally low as I have seen him in the twenty-five years we have been friends. His attitude was, "I wish never had radiation. I'd rather be dead." What seemed to bring this on was a sense that he wasn't getting better; his muscles are atrophied and going away, he has lost about 40 pounds, he still has pain in his throat, he can't get enough Boost and water down to maintain nutrition and hydration and I believe the narcotics he is taking are taking a severe emotional/spiritual toll.

On Tuesday I took him to the local hospital ER for fluids. The nurse on duty happened to be a very good friend of mine so he received the VIP treatment. They gave him a room, lots of encouragement, lots of positive comments about his healing and a strong invitation to come back anytime he needed hydration.

The next day we went to the UW for his regular weekly post-rad appointment. They decided he needed some fluids again and they also had a long discussion about his nausea. The head of Rad/Onc came in along with the resident and several nurses and they asked alot of questions and they went outside to talk. When the resident came back in he suggested regula (sp)? to help clear Eric's stomach and help with nausea. Eric's nutirition/hydration problem is that he feels so full from drinking five Boost plus daily that he can't force down enough water. It isn't the throat pain so much as the full stomach feeling that prevents him from drinking water.

After that suggestion the resident said, "We'll try this but although it is very unlikely, if your nausea continues we want to do a CT scan of your brain in case a matastasized tumor is there and making you nauseous."

Eric, the nurse and I all stopped in our tracks. Did he really just say there might be more cancer in Eric's brain? Eric is still trying to heal from Radiation and is at his emotional low of the whole experience!

I felt like crying. Eric grew very withdrawn and the little positive ground that had been gained earlier that day immediately evaporated. A few minutes later we walked the basement of the hospital to take the elevators to the cancer infusion center on the 8th floor. I told Eric this would be ok. They are covering every possibility and the chance of cancer in his brain causing nausea is very remote. In fact, almost everyone on this board has suffered various degrees of nausea and there are many reasons why, brain tumor not high among them. He didn't say much except that he didn't think he could go through this again.

When we got to the infusion center something perfect happened. The two nurses that really like Eric were both there and for some reason all but one of of the ten stations were empty. After a few minutes I told the nurses what happened and they were in disbelief. They said was it Dr. XXXX? And Eric said yes. They said he is a great resident but in this case he shoudn't have been thinking out loud. I let the nurses talk to Eric and I thought about what I should do.

I decided to go back to rad/onc and talk to the doctor. I went down had him paged and said, "I know that this isn't logical but in order for Eric to believe that his brain doesn't have a tumor we need to have that scan." He was very nice and said he would schedule it despite thinking it wasn't necessary. I went back upstairs and told Eric, and his nurse give me a high-five and said she had planned to call them and tell them the same thing, that they had opened this door and now they needed to close it.

So, next Wednesday we go down three hours early for a brain scan. They were good enough to schedule it so we can get the results before we leave that day. I know Eric like all cancer patients will have to deal with the possibility of recurrence, but I didn't expect it to be this quick.

Finally, yesterday was his birthday. He had a pretty good day. He felt ok physically and emotionally. If he can keep having more days like yesterday, he'll get better. I just wish he could get some solid food and enough water. I sense he is getting close, but his patience wore thin awhile back.

I will be out of town for a few days, but I will post again next week after the brain scan. Thanks for everyones help and encouragment... I see light at the end of the tunnel, it is just a really long path.

Jack Hovenier

Today was a GREAT day. It sure feels good to have small victories over cancer.

First, Erics' scan was CLEAR! We knew it probably would be, but it was very reassuring to hear it.

Second, Eric finally ate some solid food today. It has been six weeks since he has had any nutrition other than boost. He ate a few chunks of beef from a stew and some carrots.

It feels like he is turning the corner to recovery... and at least today everything feels peaceful.

Jack

Congratulations to you both, Eric and Jack. So happy to read some good news! Glad you can share the other and know that we are with you and that you are in my prayers.
Bon Appetit, Jack!
Judy U