Friday, July 19, 2013

Reader Discretion Is Advised

Testing.    Testing.   One.  Two.  Three.


Is this thing still on?

I have been trying to write this post for more than a week but haven't felt well enough. We'll see how it goes this evening. Might have to compose in short shifts.

If I had written it on Tuesday it would have been a different piece. It would have said I was in hell.

Or perhaps I'm a big baby.

I'll warn you that I'm going to describe some side effects that are pretty disgusting. Read on at your own risk.

Remember back when I described how cancer treatment works? It works via DNA damage and takes advantage of the fact that cancer cells already have more than normal cells, and if you induce additional damage (in both the cancer cells and the nearby normal cells), the cancer cells will finally do what overly-DNA-damaged cells are supposed to do: commit suicide. The scientific term is apoptosis.

Well, the radiation therapy is cumulative. I didn't notice any effects of radiation for the first three weeks. I was the happy newbie who would greet the radiation techs with a smile and good cheer and happily have my head bolted to the table for my daily overdose of x-rays.

On Saturday, just as I was emerging from the Chemo Tunnel, radiation effects kicked in.

It was not a gradual process.

The radiation is inflaming and/or killing the lining of my oral cavity, roughly encompassing the back half of my mouth and my throat down to just above my voice box.

The cells do not inflame or die quietly. They are mucous membranes. They produce mucous. Mucous mixed with the spilled contents of dead cells.

Apoptosis Stew.

Imagine the cold you've had in the past that produced the most mucous ever. Now multiply it by some large number.

We're talking constant, high-volume mucous production here.

A production rate so fast that at times I can barely spit it out fast enough. I sometimes literally feel like I might drown.


So now imagine trying to sleep. I lie down and within a minute my mouth is full of mucous. I have to get up and spit. Repeat.

Somehow the first few nights I would manage to fall asleep anyway. Only to wake up an hour later with a throat full of thickened mucous. Go to the bathroom and close the door and spend a few minutes retching and coughing and working to get that mucous out of my throat and into the drain. Back to bed. Repeat. I woke up every hour almost like clockwork. Then by maybe 5:00 AM I'd be dehydrated enough that the mucous production would slow and I might sleep for two whole hours. But only to wake up with twice as much accumulation, and more thickened and deeper in my throat.

A few nights of that sleep-deprivation and my emotional state was not good.

I've said to a few friends: I wonder if the CIA ever considered using this treatment regimen as an "enhanced interrogation" technique. Earlier this week I would have told them anything they wanted to know, true or not. I was a broken man. I cried frequently. Even publicly.

It's still the same but I seem to have found some coping mechanisms.

I discovered that taking a puff of marijuana would dry up the secretions for a few hours. It left me with a very dry mouth, but it felt worth it. But I realized later that it wasn't a free lunch. The mucous was still be produced, just at a lower rate and thicker. I would end up with a serious accumulation of mucous cement in my throat that had to come out somehow.

Similarly, I tried stopping hydration several hours before dinner to try to get that 5:00 AM effect closer to bedtime. That also "worked", but had the same subsequent payback.

That morning I had such thick mucous so far down my throat that my body tried vomiting to get it out. But my stomach was empty so there was no "carrier" to carry the mucous up and out. Just painful retching. It took a lot of fluid intake and a couple of hours to finally loosen it and get it out.

Have I painted a rich enough picture of the mucous situation?

Today was radiation treatment 21 of 35: exactly 60% done. But remember that the radiation has a delayed effect. So I'll continue to have increased radiation effects for approximately two weeks after my last radiation treatment on August 8. I'm going to be dealing with this mucous for another month.


A couple of nights ago I put a pan right next to my pillow so I can just lift my head and spit into it, or sit up and spit into it. Not having to get all the way out of bed will hopefully let me get back to sleep more quickly. Last night I think I had a couple of 2-3 hour stints of sleep for the first time in a week.

My team at Dana Farber always has a pocketful of strategies for the problems I encounter. But for this problem the solutions are limited. I take tussin to thin the mucous, making it easier to spit up and out. I hydrate well every day.

They suggest that I try to sleep sitting up so the mucous will just drain. But mucous draining into my stomach make me nauseated. It made me vomit once.

I can rent a suction machine like the dentist uses to suck saliva out of your mouth. But they wouldn't recommend that I leave it in my mouth while sleeping. And it would only work in my mouth - it seems like more than half of the mucous production is happening in my throat.

One thing we did start, today, is more frequent IV infusions of fluids. I'm going to get them 2-3 times per week for the rest of treatment. The hope is that staying very well hydrated will keep the mucous loose and easy to get out. It works - I felt the mucous loosen soon after being hooked up today - but it also means sleeping is going to be difficult.

In the big scheme of things even this mucous problem might not be the end of the world. But let's recap my treatment experience so far:

  • Week 1: Chemo Round 1 and the disorienting and unpleasant side effects of the anti-nausea drugs.
  • Week 2: A volcano of stomach acid (since controlled). Then thrush.
  • Week 3: Feeding tube placement surgery and recovery. Loss of taste due to chemo.
  • Week 4: Chemo Round 2. Drug side effects better managed; not quite as disoriented and unpleasant. Loss of taste augmented with unpleasant metallic taste.
  • Week 5: Drowning in the mucous ocean.

It's a constant process of surprising new problems followed by a period of developing new coping mechanisms.

I suspect other people deal with this regimen better. For my particular personality the cumulative and concurrent nature of all of these lesser unpleasantnesses is pure torture. Especially combined with the knowledge that I have to endure it, and worse, for several more weeks. I don't even feel like I can celebrate being past half way because I know what I've gone through is the easy half. For example, sometime soon the radiation effects are going to progress to mouth sores. Lots of mouth sores.

In other news, I'm on 100% tube feeding now. I haven't put food in my mouth in almost a week. It's just too disgusting. The last thing I could eat was Cream of Wheat but now that is too disgusting also. Due to the apoptosis stew and the chemo-caused metallic taste in my mouth. I am managing to drink a cup of broth most days so that my swallow muscles don't atrophy completely. Apparently if I let those muscles atrophy relearning how to swallow is more difficult than one might imagine. So far I don't have a lot of swallowing pain. I will.

In case you missed it, here's what I tweeted this morning:

I realized today I'd "forgotten" I'm fighting cancer and come to believe I was undergoing pointless horrible torture a la Kafka.

That's where I've been all week.


  1. snot funny.

    What are you doing with your time apart from all the suffering. Are you able to watch Le Tour? are you too exhausted to go walk outside?
    I'm impressed how brave you're being and thanks for keeping us all updated. You will win and be even stronger after going through this.

    1. See my replies to this comment here:

      and here: