oral cancer. My personal journey

Pat and I have been in Florida for the past 2 weeks and haven't been able to get to a computer so I have not updated my blog. Sorry.
I feel wonderful. My weight is holding steady. I still have almost no taste and very little saliva. I do have a problem though that started to develop recently. I seem to have a wad of something in my voice box. I am constantly clearing my throat. It is always worse in the morning and mostly gone by the late afternoon. It is never completely gone however. It was beginning to worry me. I guess that I will probably worry every time that I have anything strange going on with my body. I called the radiation doctor this morning and talked to his nurse. She told me that what I was experiencing was common and was caused by the thickening of my oral fluids. She asked me whether I was staying well hydrated and I said that I probably wasn't. She told me to drink lots of fluids to thin the mucous. So today I will chug-a-lug. She also suggested Benedryl. I will purchase some today.
I have gone to several meetings while in Florida. I met a woman the other night who obviously was just getting her hair back. She had had chemo for breast cancer. I met another woman who was 30 years old and had had a brain tumor removed 9 years earlier. It seems that We are surrounded by cancer and cancer surviviors.
I have been getting lots of exercise. I ride my bike several miles most days. As I said before; I feel great!

oral cancer. My personal journey

The feeding tube was removed today. I feel like a whole person again! I thought that some stitches would be needed, but I was wrong. The doc says that the hole will heal in three or four days. In the mean time there will be some seepage, and a 4x4 bandage has been applied and will need to be changed daily. My weight has actually gone up a couple of pounds. We had pork roast with mashed potatos and gravy for dinner. I couldn't taste any of it. I pray that I will get my taste back some day. I can taste sweet though and am happy about that.

oral cancer. My personal journey

The doctor doesn't want me to have the tube removed yet. He says that many of the people who have it removed this early start losing weight and then want it put back in. I have an appointment with him on Wednesday. I will decide by then. I really am getting enough calories though. I eat what everyone else is eating even if I can't taste it, and I mix up two shakes a day by using a can of formula each time blended with fruit, honey and fortified milk or yogurt. Each shake gives me approx. 550 calories. I haven't used the tube in 3 days. I am confident that I can eat enough. I believe that the hypnosis has helped. My only concern with having the tube removed is that the PET scan on March 25th might show something and then I would have to have it put back in. Still; I don't know whether I want to leave it in for 5 more weeks. It really is an inconvenience. The dressing has to be changed every day even if I am not using the tube for feeding. It has to be flushed every day with water also, and I am afraid that I am going to get it caught on something and pull it out.
The temperature today approaced 70 degrees. My sister and brother-in-law are visiting. We went to York town and walked all along the river, and then we took a drive down to Jamestown. Motorcycles and convertibles were everywhere. Everyone wanted to be outside today. The warmth felt wonderful

oral cancer. My personal journey

My wife and I have been trying to think of ways that I can get my oral calorie count up to 2500 calories a day. I want to get rid of this stomach tube. I decided to try taking the tube formula orally. I was afraid that it might have a terrible taste so I put a can of it in the blender then added a banana and 2 heaping tablespoons of honey. It tasted really good. I couldn't believe it. I ate enough today, even without that can of formula, that I got about 1800 calories anyway. I only used 2 cans of formula today. There are 160 calories in an 8 ounce glass of grape juice, and 160 in an 8 ounce glass of whole milk so I began drinking 2 glasses of each today. Both of these items are easy to get down. I also found that I can increase the calorie count of a sweet potato by slathering it with butter and then adding a couple of tablespoons of brown sugar. The rest of the food that I ate today was no different than taking medicine. It had virtually no flavor. I ate it because I had too, but I got it dwn okay. Maybe this hypnosis thing is helping. I wil try to get another session before I leave for vacation on the 12th of February. I will call the doctor tomorrow and make an appointment to get this tube removed.
I had another great day today. It's amazing how joyous life can be when I live only one day at a time.

oral cancer. My personal journey

My taste seems to be coming back a little. Food doesn't taste like it should, but most of it does have some taste. I had oat meal cooked with raisins yesterday. I used fortified milk and a generous amount of honey, and it tasted pretty good. I experimented with other foods during the course of the day. Olives had a flavor but it was different from what I remembered. I had shrimp with cocktail sauce and could taste the cocktail sauce just barely. I am hoping that this is a begining and that things will steadily improve. I have been making myself eat 1000 or more calories a day even if it doesn't taste good. The other 1400 comes through the tube. That ends up being roughly four eight ounce cans a day. I have talked to other folks who didn't have the tube installed and for the most part they aren't doing well with their weight. It is really hard to force yourself to eat when all food tastes unpleasent. Actually the tube is not that unpleasant. I am certainly glad that I chose to have it and would highly recommend it to others.
I sent an email to the hypnotherapist today asking her for another session. I am not ready to give up on that yet. My returning taste may be because of the hypnosis.
I feel wonderful. I have told people that I have never felt better both physically and mentally. My ears are still a little plugged. My taste is still way off. My mouth gets terribly dry from about 3:00 AM until I get up, and my throat is still a little sore and swollen. None of this stuff gets in the way of the joy that I feel every day. I have been blessed and I know it. I still live in today. Tomorrow will take care of itself