Wednesday, July 24, 2013

Ultraviolence

A few posts ago I wrote that we thought we had found the solution to the painful morning process of clearing mucous that accumulated and thickened during the night due to the over night period of not hydrating.

I really did think we had figured out that problem and could maybe sail for a few days with no major issues.

But starting yesterday the morning travail was back.

Yesterday I had two huge coughing fits in the morning. One of them was in the car. They start with the tickle in my throat but they turn into uncontrollable fits of spastic coughing, gasping, retching and vomiting. And blood.

They last about 5 minutes or more. After a few coughs there is nothing left to cough up, but the coughing persists. It involves considerable throat pain.

I spend the time bent over a receptacle, sobbing and swearing and trying to relax and make it stop. And with multiple strings of tenacious mucous hanging from my mouth and nose to the receptacle.

I don't know how to stop it. Eventually it stops on it's own somehow.

I described these events to my doctor as "Throat Violence."

This morning was Throat Ultraviolence. The worst one yet.

I think it was made worse by the bolus feeding of Ensure I had just done. The retching brought a froth of Ensure up into my esophagus so I had phlegm at one end and food froth at the other. I would cough hard and then my body would try to involuntarily inhale. I was terrified I was going to aspirate a bunch of that mess. I had to voluntarily slam my epiglottis shut several times to prevent aspiration. The spastic nature of my "breathing" (i.e. coughing and gasping) just seemed to push the mess back and forth in my throat with no progress. I was afraid of drowning.

It was 6:30 AM and I had come downstairs to the TV room for a change of scenery, since I had been awake since 4:00. So I was also alone. Somehow Wonderful Wife heard my coughing over the sound of the air conditioner upstairs and joined me and tried to comfort me through the latter portion of the unpleasantness and slow resolution.

When it finally subsided, I felt completely crushed. Spent. Afraid of it happening again. Afraid of it happening every morning for the next month.

Afterward I curled up catatonic in an upright ball on the sofa for an hour. Upright because I can never lie down. Lying down almost immediately leads to more coughing.

I needed to go to the hospital in an hour for radiation and hydration. I couldn't stop crying and I was imagining walking through the lobby sobbing.

I started a gravity feeding so at least I would have some calories to go on.

I realized I had to come out of my catatonic cave and acknowledge that the terrible thing was no longer happening. I tried to find a happy place in my memories. I paid attention to whatever was on the TV to take my attention off my fear. I took deep breaths. Little Sister massaged my head for a long time.

Then I got dressed and ready to leave.

The air conditioning blowing on my face in the car helped. By the time we got to Dana Farber I was able to face the world without crying. I made it through radiation treatment alright.

Then we went upstairs for hydration. That's the one good thing that happens to me at the hospital: the thing from which I emerge better than when I arrived.

Of course the first thing the infusion nurse asked me was "How are you doing?" I answered "Horrible" and burst into tears. She immediately came over and touched me and started asking why. Wonderful Wife and Little Sister were able to tell her most of it. I was able to calm myself and tell her the rest.

We confirmed to her that I am taking the tussin (expectorant) every four hours around the clock and trying to hydrate as much as possible.

We talked again about a suction machine and decided to request they order one for home. It can't hurt.

The nurse offered me Adavan in my IV. She said they use it a lot in the infusion center, it calms people down and even puts people to sleep.

Please!

It worked just like she promised. I did calm down. And I did fall asleep for a while.

Apparently the hydration is going to be a constant battle. I feel like I'm doing a lot and yet I still have dry periods during which the mucous accumulates in my throat and thickens. That means Throat Violence to come.

Some of that accumulation is due to the sinus infection. I've been on antibiotics for four and a half days now. I think I'm noticing a decrease in the amount of opaque, chunky, yellow mucous that is its hallmark. Hopefully it is resolving. If so I hope that lowers the level of violence.

Way back at the beginning, Big Sister and Friend Paul told me that the worst period would be the last two weeks of treatment and the first two weeks after treatment ends. Tomorrow marks two weeks until the end of treatment. So I guess I'm entering the hell month.

This is hard. And I'm frightened.

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