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Chemo

Maybe I should explain myself and my relationship to E2.

There was a time I was a student and afficionado of some artistic endeavors: writing, music.   Maybe even physics, which may be mankind's most creative pursuit.

You could ask me why I stopped.  Anything I say is inaccurate.  The feeling is difficult to put into words other than a trite, "I had other things pressuring me."   This sentiment bears some truth.  There's a question in the air - can you go through 6 decades on this planet without a major life altering event?  In the past I would have said, "depends." 

Now I say, "no."  Life altering events are what is supposed to happen.  They are the very definition of pressure.  And I've had those, and I swear, the last thing on my mind was writing.  In the past I would have written about it in diary form here.  Nearly 20 years ago when I found this place, I couldn't imagine a day without writing.  Then, as if I'd been pithed by some cosmic biology student - that portion of my being simply ceased.  I can't hear its heartbeat. It doesn't breathe.

Soon, I went a year, then two, then more, without writing anything other than e-mail for work. It didn't bother me.

My creative side was still engaged, though.  I found myself building things - electronic things, and machines.  I tried to make a small business out of buying broken electronic equipment on eBay, fixing them, and selling them.  Well, the fun was in the fixing, and it turns out it's hard to sell previously broken things, no matter how fixed they are. 

But I still fix broken electronics and I still make machines with my mill and lathe and Miller welder.  Maybe those things  took the place of writing and synthesizer music.

And I did have several medical mishaps - one I wrote about here, where my chances for survival, depending on to whom you speak, were either 25% or less than 25%. 

I survived those two events (caused at the hands of a human surgeon, who slipped or something) only to be told 2 years after the latest one, that I had leukemia.

Yes, cancer.  Oh well.

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My brand of leukemia, called Chronic lymphocitic leukemia comes from a deletion of the 11q-ATM gene and the 14q gene in all my DNA.  Amazing how they can figure out these things.  Even more amazing to think - holy cow, where did they go?

One physican I spoke to said, "Haven't seen a case of CLL yet that wasn't caused by radiation."

Ok, but where was I exposed to ionizing radiation?   Hmm.  Could it be 10 years working at RCA with a desk close to the cobalt 60 source?  Could it have been 30 years extensive intercontinental travel - where every transoceanic flight imparts the equivalent of a chest X-ray?   Maybe I was abducted by UFOs in my sleep?

Nobody knows.  And it's futile to spend brain cycles trying to debug the un-debuggable.

Though I am an engineer, and I believe there's nothing made by humans I can't fix.  And I was made by humans (just ask my parents).  So I should be able to fix this, right?

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If you have to get a type of leukemia, then CLL should be your choice.  Yes, it's incurable.  And yes, inevitably it's fatal.  But it's treatable and statistically, you probably won't die of it (but people do).   So while it's not nothing, there are worst fates.  CML would be one.

 

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Geek Leukemia Joke

 

Me to a good friend:  "Well, they figured out what's wrong with me that caused the leukemia. I'm missing 2 genes on my chromosomes in all my DNA.  I have gene deletions."

My friend: "Ok.  But you made a backup, right?"

 

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I have told that joke to every doc and nurse treating me.  They all look at me like I've burst into flames. 

There is no humor in the medical world that doesn't involve biology or people in the ER who have fallen off ladders in terrible christmas light erecting accidents.

 

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So I'm sitting in the chair in the chemo infusion room, getting serious poisons dripped into my veins, and I tell that joke to my attending PA.   She tries to stifle a giggle.  I tell her it's ok to laugh.  She shakes her head.  Fiddles with my IV. 

Is this how it's going to be?  Serious to the grave? 

Maybe I should practice my standup routine. 

 

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I'm not sure there's much to say about chemo than has already been said here by denizens past of E2.  I'm on a well worn path.  Some have died : (grundoon, dannye).   Some still walk among us (riverrun). 

The effects are what you know.  If you don't, you can watch youTube videos.  Plenty of people have recorded their chemo experiences.  So you know of hair loss and nausea.  Weakness and chills.  Insomnia. 

Chemo is absolutely diabolical.  It was said that it's "poisoning yourself and hoping the cancer dies first."  But it's not that.  It's quite clear it's killing something, but it's not out to get you.    Unfortunately, you happen to be in the way when it attacks. 

And it hurts you in ways nobody talks about, because the former listed effects are the most visible to others.

The way it tears you apart are numerous.  All of these things contribute to a breakdown in the human personality.  The psyche is invaded.  Chemo brain is a real.  They tell you about it in the oncology ward.  Don't expect a clear head.  You'll forget and make mistakes. 

How about this:

The famous senior-citizen cliche' is :  you walk into a room and can't remember why you're there.

Well, I have another one.

You go into the bathroom, stand in front of the toilet - and can't remember if you've peed or not.

Nothing is sacred.

 

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One thing that really bothers me, and I didn't think it would:  I can't  taste anything.  Or rather, I should say, everything tastes like it has been soaked in seawater. 

Makes for a lousy morning cup.  Ruins the prospect of sitting for a nice meal with family. (COVID not withstanding - and I should say, that to add to my misery, I spent 12 hours with fever/chills courtesy of Moderna.  At least I have an immune system.)

But the very first thing it did was to turn me from a normal human being to a cancer patient.

That one is a little more difficult to put a finger on.  Maybe it's the destruction of daily routine.  Maybe it's the alteration in energy levels.

It's the feeling that everything you love, including your own impact upon the earth, is under attack.

It's the feeling that for once you have the worst flu you have ever experienced - and it's never getting better. 

This is why most oncology offices have posters on the walls urging patients to seek counseling for depression. 

 

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I'm on 2 types of prescription chemicals - with lots of non prescription stuff thrown in for good measure (prednizone, benedryl...)  One is called rituxan, and the other is bendeka.   I'm not sure which of those creates experiences that make you wish you were dead - but one of them does.

 

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In America, where I live, cancer is a very profitable business for someone. 

I still have a day job and I get my health insurance through my company.  So the unaltered oncology bills come to my house.

Every time I visit the oncology center for an infusion, the charges add up to $125k.  That's 1/8th of a million dollars and it goes to the companies who produced those drugs.

Now, I am a capitalist and the last thing I would do is to deny any organization a right to profit from their ideas and labor.

But this does seem a bit steep - especially since the alternative is death.

Sure, it's not their fault you got cancer, and you can deny treatment.

That would be the brave thing to do.  Face death rather than financial ruin.  (Lucky for me, I do have insurance, so it will only cost me tens of thousands of dollars instead hundreds of thousands).

 

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I go every 4 weeks.  For the first week after infusion, I question my ability to persevere.  That's the experience that makes people say, "You are so brave..."

I swear - if anything good comes from this experience it will be if I can convince people to stop telling cancer patients they are brave.  There's no bravery here.  If you gave me the chance to chicken out and run from this thing - I'd be outta here in a heartbeat.

This is not bravery.  It's fear of death.  It's resignation.  As my youngest daughter has said to me, the one who now puts out the worst west-coast forest fires for the USFS - "Dad, the only way out is through."

There is no choice.  This too shall pass.

 

 

I said that to the PA who popped the IV into my vein 2 weeks ago when she asked me how I was doing.

 

Me: This too shall pass.

Her:  Excellent attitude.  It makes me feel good to hear you say that.

Me: It was all I could think of.