The Taber Family Blog

Not much has changed with my condition in the past week or so. Which is actually good news, since I was a bit worried my mouth would get to a point where eating might be a REAL challenge. So here’s where I’m at today.

I still have difficulty eating, but I’m able to swallow pretty well, and just have to plow through things like cream of wheat, jello, protein drinks and such. My mouth is pretty ragged and my tongue is particularly raw and very sensitive. My teeth seem like their doing ok, since I do the swish and swallow medication a few times a day to keep any problems from becoming problems. I don’t really take any pain medication because I really have no pain. I have discomfort most of the time, but not pain. The Erbitux rash is still with me, but pretty much just a red rash on my face, chest and back and not nearly as explosively pimply as it was weeks ago. My mouth is dry nearly all the time, especially when I wake up in the morning. The mucus in my mouth has begun to make me heave pretty badly if I don’t clear it out real quick in the mornings. Seems like a mental thing but I have a hard time controlling it and once the heaving starts it’s hard to stop it before my whole body is involved and hurting.

Well that was an uplifting bit of information wasn’t it? Sorry about that.

Overall, I think I’m doing surprisingly well for this late in the treatment. The ability to eat my own food is a huge mental “win” for me. I feel like I’ll be eating on my own the entire length of this process. I’m not nearly getting the recommended 2000 calories a day; probably closer to less than 1000 most days. I’ve lost nearly 20 pounds so far. Denise says I’m too skinny and is always encouraging me to eat more frequently, but I don’t feel skinny.

And finally the radiation burns to my neck are a bit more pronounced week to week. I keep trying to save my skin with various moisturizing lotions each day and for the most part they seem to help. Since the radiation is targeting my jawline down to my entire neck, I’ve lost a lot of beard and neck hair and don’t have to shave any longer. My beard is so thin, there is not much left of it. I can pull the hair out with little or effort at all. So each morning when I wake up, I find my own pillow has contributed to even more beard thinning. And for about the past week, my hairline on the back of my neck has risen quite a bit. If I had paid for this type of haircut, I would have asked for my money back! Well all of that will certainly grow back months from now, so I’m not worried about it. If those are the prices to pay for getting rid of this disease, then I’m all for it.