Not feeling too bouncy

toon cute bunny with big eyes hopping up and down with paw up

So my brain finally stood up, brushed off the dust, and asked when I was going to write on Substack. I’d been in a post healing cancer treatment trance the last few weeks with pain so exquisite that I had to take some heavy pain pills just to keep from screaming.

It’s like this— when they strap you down with a hood and radiate the hell out of your mouth, then the after the treatment you are left with an open burn wound in your mouth that takes about that long to heal. Everything from the tongue, cheeks, throat, and various skin swells, You are either trying to not cry or trying not to bite something accidentally.

Then the taste buds send out surrender signs and everything tastes like sawdust if you can get it into your mouth. It stings, burns, and complains to such a level that even your subconscious can only think of pain.

You forget how to walk. (Thank God for the walker.) You forget how to breathe. You forget that there is anything out there but pain. When you try to talk it hurts so badly that the only thing you want is that no one calls you, no one talks to you, and no one expects you to speak.

After speaking and sounding like a person with a swollen tongue, which you have, you give up. It isn’t worth making it more painful by speaking. No one understands you anyway. People who thought you were smart, look at you with pity as if you had a lobotomy.

(clearing throat)

Anyway for days I couldn’t swallow without making the hair on my head hurt. I finally cut my hair off so that I didn’t accidentally pull my hair, making the pain worse.

Enter encouragement.

The one little thing that helped me through it all wasn’t my resilience. I almost threw that out the window. It wasn’t my personal spirituality. It was a simple tube connected to my stomach.

Instead of starving, I was able to feed myself with the G-tube. As the burn healed slowly, I was able to pour more protein drinks down the stomach. There is a limit (1 cup about every 1 1/2 hours) that I can put in the stomach. I even put my meds down the tube.

I knew that I would get more energy if I could just eat food. I would test it every few days just to see if I could swallow. My world narrowed to eating and trying to stand without fainting.

Here is the very sad part— I couldn’t even read much the first few weeks and reading is THE activity I do every day. It is my escape. Then I discovered narration (basically stories on YouTube). Sci-fi stories of what would happen if humans went to space and met other spacefaring species. What about our indiocyncracies of domesticating animals and predators? What about our creativity and emotions? It made me laugh and I felt my brain start to wake up.

Stories took me out of the pain and into other worlds. It reminded me of my childhood when I was first introduced to Andrew North, E. E. (Doc) Smith, Isaac Asimov, and others and when I gulped down pulp fiction like candy.

So my status today? I’m beginning to eat real food. It still tastes like sawdust, but my smeller is coming back. I’m hoping that food will taste good soon. I still have enough pain in the afternoon and evening to make it hurt to eat, but I am walking and doing very light chair exercises.

I’ve wasted away to a weight that I had before I became an adult. I’m hoping to make that better too.

It is no shame to clutch onto something that will take you out of yourself and give you hope. No shame at all.