Thursday, May 31, 2007

Conversations with an 18 year old

The Type That Should Never Have to Happen

"Do you think I keep gagging because of the tumor?"

"I wouldn't think the tumor or cyst would cause you to gag."

"No, the brainstem tumor."

"Hmm...well, I've heard about the hiccups with a brainstem tumor, but I'm not sure about gagging. We'll have to ask the doctor about that."

"Maybe it's making my neck stiff too."

"I think that's probably stress Steven. I'm not sure, but I don't think these tumors would make your neck stiff unless maybe there was a problem with the flow of cerebral spinal fluid...

(Scared-silly silence.)

...And there's not, as far as we know."

"But the brainstem tumor will do that?"

"If it grows a cyst, yes."

"But that won't happen for another five or ten years, right?"

"I'm not sure. You're still at an age of fluctuating hormones, and they think that causes these tumor to be more active...

(Too much information. Silence. The stare.)

...And the scans show lots of edema in the brainstem, and I think that's a good indication for you that a cyst will grow before that. But we just don't know."

"That's not good."

Research.

Fundraising.

More later!

4 comments:

tongue in cheek said...

Oh. I just want you to know I am hear listening. And praying.

diary of a genetic defect said...

At least you are honest with each other. It would be terrible if he felt he could ask for fear of upsetting you. Thinking of you all often.

diary of a genetic defect said...

edit - couldn't ask

Beverly said...

You're so right about open communication, but it has been hard to find the right balance because of Steven's age...if he were younger I would share less an protect more. If he were an adult (in the sense of being totally independent...not just an age of 18 years) I would blurt out more than I do.

Steven had pre-op meeting this morning, and I told him everything that I would ask or information that I would volunteer ahead of time. That way I didn't surprise him with anything!

We saw a counselor at the cancer center not long after diagnosis. This man was very helpful in simply saying that as long as Steven was willing to talk to me, that was all that he needed.

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