Kevin's Dead Cat

After surgery sliced off an entire tumor and 1/3 of my tongue, plus six weeks of radiation therapy, I've been re-learning how to eat, drink, and talk with my newly re-constructed tongue and coping with side effects. But the cancer came back and I don't know what's going to happen next.

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Location: Los Angeles, California, United States

I don't want life to imitate art. I want life to be art.

Tuesday, March 29, 2005

Nothing's gonna change my world
Nothing's gonna change my world...

For the past few days I've been researching different chemotherapy drugs, radiation procedures, and comparing all their side-effects to prepare myself for this morning's meeting with the oncologist. I've been trying to get my mind in a place where I can go through things like possible hair-loss, hearing-loss, nausea, pneumonia, and anything else I discovered on the Internet. I even made a list of questions for the doctor based on message board postings and dubious online articles. And it was all for nothing.

I told Dr. S everything that's been happening and everything I'd been told since I boarded this crazy train. He examined my tongue, neck, and abdomen.

The good news is I won't be losing my hair, hearing, or going through radiation again. But I may lose my tongue.

Since radiation didn't work the first time, he doubts another six weeks of that or chemotherapy will make the cancer go away. He said that chemotherapy will make me sick, but it will not cure my cancer. At best, it will shrink the tumor or prevent the cancer from spreading.

He said that the cancer cells I have are "well differentiated" meaning that they are as close to normal cells as cancer cells can be. If they don't spread to other parts of my body, it won't kill me. I didn't ask, but based on my research I think if I don't do anything there will be tissue and bone loss when it spreads to my gums, jaw, face,... you get the idea.

I have a CT Scan scheduled first thing tomorrow morning. They're going to scan from my jaw all the way down to my abdomen.

He advised me to undergo surgery again. Since radiation didn't work, and he doesn't believe chemo will do much good, that's what my next step should be. I have an appointment with Dr. McNicoll's office next Wednesday morning. I guess it's Dr. Lueg's turn to take a crack at me. He would've performed my tongue reconstruction the first time if his schedule hadn't been so tight. I don't know what my chances are for a complete reconstruction, but I do know that they can't reconstruct taste buds. I'll never taste anything again.

I left the doctor's office and went grocery shopping.

When I got home, I sat down and let everything wash over me: the post-surgery and post-radiation depression I'd been fighting, the anger from the cancer coming back after everything I've been through, the looks I got from some family friends and relatives during Easter (as though an expiration date was stamped on my forehead), and the fear of not knowing how this is going to change my life AGAIN!!!

You could've heard me howling from as far away as Ventura.

I didn't eat dinner last night because there were people around, and the pain was just too much. So I had a very long, very slow lunch. Then I went to work on scraping paint and rust off my window panes while blasting David Bowie. Yesterday, Agnieszka gave me a copy of Young Americans. I've been playing the chorus of "Across the Universe" on a loop on my stereo and in my head ever since.

The other day, I gave some advice to one of the survivors on the ACS message boards who hadn't been able to eat for 11 months because of her tongue cancer. I told her to keep reminding herself that "there is more to you than what you've lost or what you miss."

It's time to take my own advice.


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