Thursday, August 14, 2008


Photo of niece R. and my old car.

Went to the cancer support group again last night. I asked the group if those who have/have had oral cancers had found ways to deal with the dry mouth, the deteriorated tastebuds, the sore throat from the radiation treatments. A couple of people went off about losing their teeth because of the effects of the radiation, how it messes up the gums, and weakens the jaw bone. I freaked out. My oncologist never told me this. Of course I cried. Everything makes me cry. Afterwards the PA who was one of the facilitators took me aside and said that losing teeth is not the case for everyone, and that one person's cancer/treatment is very unique to everyone elses. She tried to assure me that this probably wouldn't happen to me. Still. I've been twice to the group, and the first time made me feel awful finding out that cancer is a "chronic illness," and that I will not in fact be "cured." I told this to one of the radiologists this morning, and she said, don't go back to the group. You don't need to get that kind of information that makes you feel so awful. I think I will take her advice. It's true, many of the people in the group have "worse" cancers than I, but I feel like I'm getting way more information than I can handle right now.

I was newly angered that I never heard from the Yale cancer docs whom I went to for a second opinion. They never got back to me. So I came home last night and wrote an email to the directors of the Yale cancer center with my complaint, and sure enough, I got a call from both those docs this evening. Head of the medical oncology unit, and the head of the ENT department. The former apologized (one tiny point for him), and the latter said that they might not have done surgery, but might have done "seed" placement of radiation, followed by the conventional radiation treatments. I was glad they got back to me, but why oh why do I have to get all worked up and write forceful emails before I get a response from the various bureaucracies I am dealing with? Lesson to all reading this: do not hesitate to track down the people who are supposed to be responding to you, but don't, and let them have it. The squeaky wheel gets the grease is a cliche for a reason.

I also called my dentist who, when I told him I had tongue cancer, said, "Oy." Again, I apparently was supposed to have had a check up with him before the radiation treatments began, but my oncologist didn't tell me that either. I need to know why she was not concerned about my teeth, but she is away this week.

I scored a couple of nice things in bulk trash today. The best is a retro turquoise hutch that, with the help of two guys hanging about on the street whom I paid, got the heavy piece into my Forester. I now have some new scratches in the cargo area of the car, but oh well. Has to be initiated sometime.

Got snail mail from MP in Romania today!! Made me happy to hear from her that way.

Gas prices are down to $3.89, which is good. Just confirms that gas prices are completely manipulated.


Erin said...

I agree with the radiologist. If you feel a group would be helpful I would see if anyone can recommend a different one.

Have you tried any of the dry mouth toothpastes? J's mom used those when she was having chemo.

Also, I want to see pictures of the hutch. It sounds lovely!

Kim said...

nice to see R!
I agree, too, if it's not a *supportive* group that's helping, don't go to it.
I'm with Erin, I'd love to see the hutch! Good score!