Tuesday 12-15-09

Only 5 more radiation and 2 more chemo sessions left!

I have not updated the blog because I was just so overwhelmed with the constant pain that I pretty much did nothing on Saturday, Sunday and Monday. I also had a case of the blues, caused by the constant pain, but I woke up feeling much better today and am back to my abnormal self!

I have started taking Vicodin on a schedule now (4 times a day), to try and control the pain. I have ulcers on the very tip of my tongue and all along each side which causes my mouth to hurt when I eat, swallow or talk. The ulcer on the tip of my tongue is the most troublesome one. It is hard to keep the pain numbed because the lidocaine wears off fairly quickly and the tip of the tongue is constantly rubbing against my teeth or any food that I try to eat. It will lead to downward spiral if I am not careful. When I try to eat, my tongue hurts so much it kills my appetite and then I don't want to eat.....If I don't eat, I lose too much weight and don't take in enough liquids and dehydrate. Today the doctor asked if we should go ahead and schedule a day for me to come in between Christmas and New Years to have fluids pumped into me. I declined because I am still doing ok taking in liquids and that is confirmed by my blood work. Pictured below is the ulcer on the tip of my tongue. The sides of my tongue are covered with these ulcers as well.

As I have mentioned before, I see the radiology team on Tuesday and on Friday, and the Oncologist on Friday. Last Friday, the radiologist switched me to a new mouth rinse. This one is called Triple Mix. It is Maalox, Benadryl and Lidocaine. When I use it (about 6 times a day) my mouth goes numb like when you have shots at a dentist. This is good for pain, terrible for my clothes because I drool out any liquids I try to take after the rinse. When I brushed my teeth Friday night it was a complete mess, I have had to learn new skills :)

Here is a picture of my radiology team, the lead doctor is the one on the right side of the picture, Dr. Le.

Something else both teams have told me is that even though I finish radiation next Tuesday, the following week should actually be my worst. They have observed this with all the other patients and want me to anticipate this issue. They said that after about a month I should have a surge of recovery and then it tapers off and gets incrementally better taking about a year to fully recover.

At today's session with the radiology team I was also given another process for skin care. I now have to use what is called the Domeboro wash. It is a special skin treatment for the areas of my skin that are showing severe reaction to dryness and radiation, so the middle of my back and both sides of my neck need to be soaked with the wash using gauze pads and letting them sit on the areas for about 20 minutes 3-4 times a day. I am now using Aloe Vera lotion, hydrating cream and the Domeboro wash on my skin.

Also, as you may have noticed in one of the pictures above, I have not shaved since the day before Thanksgiving. My face is too sensitive to handle even an electric razor, so I have the start of a beard, and appropriate for the season, it is pretty much white.

Today's chemo session was uneventful, just as I always hope it to be, and leaves me with only 2 more of these sessions to go. I am just looking forward to getting all this behind me.