Oncology 101

I wanted to save my next update until I actually had something to say. After nearly 3 hours at the cancer center, I have plenty.

This may be pretty stream of consciousness. My apologies.

Because the cancer had moved to my nodes, my diagnosis was changed from Stage I/II to Stage IV. On the upside, stage IV mouth cancer has a very high cure rate. On the downside, the side effects of radiation are fairly horrible. I don't have to get tattoos, though. I am getting my very own, custom made face mask-- think fencing, only in white plastic. The tattoos will go on it instead of on my face and neck. Because it is impossible to hold your head still for 30 minutes of treatment, they put the face mask on you and BOLT IT TO THE TABLE, therein insuring you will hold still.

The majority of mouth cancer patients undergoing radiation end up with a feeding tube. They prepped me for this right at the start. Going to the doctor and hoping I have not lost weight will surely be a new experience for me. I see the oral surgeon this afternoon to talk about fluoride trays and teeth pulling. He will take a panoramic xray and determine the quality of my teeth and my jaw bone. Any teeth that are the least bit weakened will have to come out as they will more or less disintegrate during radiation, and the wound won't heal. Talk of hyperbolic chambers and...I don't even want to go there. At first peek, she only felt there was one with a pretty deep filling that may need to go.

She is recommending a shot of ... I can't remember, but it will help protect my remaining salivary glands from some of the radiation to hopefully avoid permanent dry mouth and again, tooth loss. The shots are horribly expensive (like $400 each) and I'd need one every day of radiation (5 days a week for 7 weeks), in the stomach. So, first the insurance company gets to decide. The typical side effect is nausea, which is not great when calories are a premium.

The recommended diet looks just like Karissa's diet. Whole milk, creamed soups, add powdered milk to everything, milk shakes, Ensure. At least I've had three years of practice at it.

There is some flexibility in the radiation schedule so as to not totally destroy the Bat Mitzvah and beach house plans. And they run a shuttle bus from Florence daily, so I wouldn't have to drive myself in.

I see the medical oncologist tomorrow afternoon for his take on all of this and the decision on chemo/no chemo. And Karissa see the doctor to see if the fluid has cleared up in her ears, or off to the ENT. Karina, Karissa and I all see the dentist on Friday. Monday it is back to Portland to see Dr. Dierks again and see if my neck has healed. While driving to Dr. Dierks, ECares is calling me on my cell phone to do Karissa's developmental eval for 3 1/2 so she can be retested for speech and those pesky optional Ss and Hs. Tuesday, back to the oncologist to be fitted for my mask. About two weeks after that, I'll start radiation treatments five days a week. Thank goodness Karina will be home for the summer. I just have to schedule around swim team practice and meets.

Whew! Oh, and the truck wouldn't start this morning (Karissa likes to play with the map lights when she gets out and I forgot to check. In a way, it worked out for the best. Kelly had a meeting he didn't think he could rearrange, but when he had to come get me because I was stranded, he came to the appointment. I would have been pretty freaked out if I would have been there alone.

They made us a copy of the transcription of my surgery, if you are into that kind of thing.

AND, she snaked a tube up my nose/down my throat to check the back of the surgical site. Kelly got to look at my vocal cords through a scope. Not so much fun for me.

Here is the new challenge: high caloric foods which are soft and/or easily swallowed. I am also taking recommendations. I have "kind of" been given a license to eat for the next two weeks since it will be a long time before swallowing will be easy and my taste buds come back. Crab is already at the top of my list. What would you eat if it was you???

Love,
Kiara