Tuesday, March 22, 2011

Next step: radiation and related suckiness

What has happened so far: I'm done with the three rounds of induction chemo. Apart from a handful of bad days where I couldn't eat solid food, and some other minor side effects (hair loss, slight ringing in the ears, a constantly runny nose — somehow I didn't realize my nose hairs would fall out — minor fatigue), it was surprisingly easy.

So now it's on to Stage Two. Thirty-five sessions of radiation, five days a week for seven weeks. Oh, with a weekly chemo session thrown in, but at least that's just one drug (Carboplatin, for those keeping track).

Because they're zapping radiation into my face, which is pretty much prime real estate, I have to wear a custom-built plastic mask to hold my head completely still. I'll look a lot like this (though obvy without the chest hair. As far as you know).

The mask is constricting but not uncomfortable, and I don't have issues with claustrophobia. I just close my eyes and breathe and try to relax. Oh, and apparently I get to take it home at the end of treatment. Some people make them into art projects; one guy uses it as an ice mold to float in a punch bowl at parties. The possibilities are endless!

For the first couple of weeks, I won't notice much in the way of side effects.

And then ... things will start to go downhill. The combination of the chemo and the rays will start to blast out my taste buds (which will make things taste strange and then make things not taste at all), and I'll lose my appetite. Then I'll lose my salivary glands, which will instead start to weep mucus (frickin' A!) that I'll have to spit out every few minutes.

Eventually, it seems, the inside of my mouth and throat will be so raw that eating will be extremely painful. And I'll have no appetite and no energy, so I won't want to eat anyway.

At this point, the Thing To Do is get a tube fitted in my stomach, through which I can deliver specialized liquid nutrition directly. Bypassing the middle man, so to speak.

However. It is my absolute goal not to have to do this. I can't quite explain why, apart from On General Principle. I eat. I write about eating. So as long as I can hold out — as long as the pain is bearable and I have the willpower — I'll do my damndest to keep my weight up, get my RDA of calories and nutrition, the way humans are supposed to, and avoid the tube.

One thing that will help, I think, is acupuncture. I did a couple of short sessions during chemo, and the last round of mucositis, which I expected to be most severe, was the most manageable of the three. I take this as a sign that I should do more.

Once the seven weeks are up, it can take another few weeks before things slowly start to improve, and around eight weeks before things are more or less back to normal.

Taste buds can take up to a year to come back fully; some tastes may be permanently altered. So that will be ... interesting.

I'm going to keep writing about as much of it all as I can. But there may be chunks of time when I don't post much. Don't worry; I'll be back.

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5 Comments:

Blogger -mt said...

This comment has been removed by the author.

8:01 PM  
Blogger -mt said...

Oh baby! You have such courage to spill this all out. Just when I think I'm having a rough week (which I am) you reset the marks. Stay with us, let us stay with you every step

8:03 PM  
Blogger adele said...

Good luck!

I don't know what else to say that isn't going to sound trite or corny. (My father had cancer and chemo was rough. He did make a full recovery, though.)

12:30 AM  
Blogger Linda said...

Go get'em, Carolyn. You are one tough cookie. (Which I know you will be able to continue to eat! Without a tube!) We're all rooting for ya!!!! xoxoxoxo Love, Lindr xoxoxoxoxox

8:54 AM  
Anonymous Saul said...

Carolyn--
It was great to see you last week. Thinking of you during this time. Anxious to hear your Zakim thoughts!

10:37 PM  

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