Well today seems to be a little better than yesterday. I think the cold I caught a couple weeks ago is starting to end. Don't have the nasal congestion, and have been coughing up less. Today I did worked on stacking some wood in our basement, that my inlaws were kind enough to drop off, hopefully will stop the furnace from running as much. Took my mind off things for a bit, and actually worked up a sweat. So been putting a lot of Gatorade through my peg tube to stay extra hydrated. Today I even tried some Rootbeer that had gone flat, and was able to drink it by mouth probably only had 4 ozs--but even that feels like an accomplishment. The progress over the past few days is encouraging. Hoping I will be in much better shape by the time I have to go to my follow up appointment with Dana Farber on April 15th.

Paul

David,
I sure hope I will be able to say everything is just about back to normal when I'm 16 mos out! It's so good to hear that you are almost back to pre Tx normal!!!

007,

I hope so to. Sixteen months doesn't sound like a long time when you type it or look back on it but man it sure felt like when I was going thru it. Since it does seem to drag on, and you recover in tiny bits and pieces you get to these stages where you think that you have finished recovering. But now, even if I don't recover any further, I'm way pleased with how much I did recover. I won't win any cooking contests but I do enjoy everything I eat without limitation. I hope this fall you will be posting as a happy eater again.

Christine,

Thanks for the suggestion of Yoo-hoo, I haven't had it since I was a kid, but picked up some today on my way back from a Chemo follow up appointment, and am able to drink it. It felt good drinking something cold, and it didn't burn my tongue. My bloodwork came back good from the Chemo appointment, and they said it looked like I was doing well. Hopefully the progress continues. It's amazing how much it boosts the spirits to be able to drink something.

Paul

Paul:

Im glad that the yoo-hoo works for you. Thats one thing I drank throughout my treatments even with a sore mouth. Ive since moved up to chocolate milk which is thicker and more calories.

It sounds like you are making some amazing progress. With just finishing treatments last week, you must have alot of energy to be stacking wood. Be careful of exerting yourself too much. Right now your body needs extra calories and rest to heal from the ordeal of treatment. For me, I was in bed for 3 weeks after treatment and even ended up in the hospital.

Have you tried eating food? The easiest food for me was yogurt. Dannon banana is very creamy without the chunks most yogurts have.

Hi Christine,

I haven't attempted food yet. I am not able to drink large amounts by mouth yet. Usually about 2 ozs or so at a time, but at least it is a start. Still coughing up a thick and slight green mucous. Hoping that will go away soon. My throat is pretty sore, so being able to drink the Yoo-hoo cold feels good on it even for the few seconds that it is happening. The suprising thing is I can taste the chocolate, although I haven't had a Yoo-hoo in at least 20 years, so I am not sure if it tastes the same as I remember it. The most taste comes fromt he initial sip, I loose most of the taste after that. My mother-in-law picked me up a couple packs of Boost Plus, which I believe has 360 calories, so I have been putting 1 of those in my feeding tube each day, and along with the jevity it brings me to about 2100 calories per day, plus I take in at least another 20 ozs of fluids during the day--a few by mouth most by the peg tube.

My pain isn't too bad, but I am wearing two 25 mcg Fentanyl patches, althought I think when my wife changes them in a day or so, I will just have her put on one.

Paul

Paul,

Be careful when you ween yourself off of the pain meds. I stopped using them cold turkey and broke out into sweats and chills. I had to go back on them and I eventually went down to 12.5 fentanyl patches and gradually reduced my dose of Oxycodone. That seemed to work.

As far as attempting food, I started out having cream soups for lunch and pudding. It took a lot of practice swallowing to get those muscles working again. I eventually worked my way up to frozen dinners that had mashed potatoes and gravey.

Paul:

The patches need to be monitored by your doctor. It should be decreased very gradually. You feel ok now with using the two 25 patches. If you decrease to just one right now you may unfortunately feel pretty bad. Its the worst right when treatment ends.

Your calories are pretty good at 2100 per day. Even more would be good, right now your body is burning calories so fast trying to heal. My doc told be try for 2500-3000 calories per day so healing would be easier. Your liquid intake is very good.

Im glad the yoo-hoo works for you. That was one of the few things I could drink and taste throughout my treatments. Its as thin as water but has more calories and vitamins.

Have you tried any over the counter meds for your mucous? The peg tube sure comes in hand when its time to take yucky medicine!!!!

Paul,

Get more calories into your body right now. I was told and I did drink 3000 + cals a day post Tx and I know it helped my body recover quicker and better. Try the Carnation VHC with 560 cals in the same 8 ox can.

Re taste being stronger the first sip or mouthful. You will find that to be the case for many more months to come. It's as if your taste buds get overwhelmed after the first pass. Anyway that's a normal part of your recovery process so don't be discouraged if you continue to experience that for a long time.

Well I am going on 4 weeks now. Last Tuesday I met with my Dr. at Dana-Farber and he said I seemed to be healing well since my treatments. It was encouraging, as he seemed very positive about where I am at so soon after finishing my treatments.

I am still getting the majority of calories through my feeding tube, by pump at night. I have been able to drink Yoohoo, cocoa at room temp, was able to drink coffee at room temp--but it didn't taste good as it once did. Have been able to eat Jello as well, am considering trying some scrambled eggs tonight, hopefully I will be able to eat them.

Unfortunately, I still have very thick saliva, and over the past 4 days or so I have found it intolerable to swallow-as it makes me gag. I believe is due to the swelling in my throat and at the back of my mouth. Still have some green mucous, so I think I still haven't completely gotten over the cold I had.

I have been trying more foods, found fresh watermelon and cantaloupe burn my tongue a little, hoping to try some scrambled eggs tonight, and possibly some pancakes or french toast covered in syrup.

Paul