What chemo felt like in retrospect/My Uncle

This is a copy of an email I sent to my cousins last night.  My “uncle,” through my family of tangled branches (read story,)  has a cancerous brain tumor and has to be watched in the the hospital 24/7 as he tries to make a run for it every chance he gets.  He can not express himself right now, and I am trying to imagine what he might be experiencing without an ability to speak it.  Perhaps in writing this someone else going through chemo (mine was ACT for breast cancer) or their family member, will also have a glimpse inside what a treatment can feel like.

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Oh, I’m so sorry.  I hope that somewhere inside he knows this treatment is for his good.  Chemo and hospitals are brutal.  Necessary evils I wish we did not have to face.

The following is just my unsolicited response.  Ignore it if it doesn’t resonate with you.  I got so much advice I did not ask for or need this year I nearly puked.  People think they know your situation when they have no idea, and yet they still give it because they love us.  And so I will give mine because I love you.  Just throw mine out the window if it isn’t useful.  Still, I have thought about what your dad might be experiencing and tried to compare it to what I’ve been through to see if there is some compassionate understanding I might contribute to help you.  I don’t know if it will.

I know there are a millions different kinds  of chemo and his is certainly far different from mine.  I will share with you what I experienced in retrospect in hopes that maybe something is similar to what may be happening with him and that he can not articulate to you.   Maybe I can share what might be going on in his brain.   My chemo would hit me like a tank about 2 or 3 days after and I would be completely depleted for many days.  Chemo was unlike anything I had experience before.  I lost my ability to connect the dots quickly, it was like life was moving in slow motion.  I saw what was happening, but could not process it at the normal speed.  Perhaps that is happening in Uncle’s mind as well.  I remember feeling like I needed the world to be quite. Everyone just please speak softly or not at all.  Please stop moving, turn the lights down, don’t do that thing.  Shut the fuck up!!  Noise, motion, light were incredibly annoying, and I could not handle them. Chemo can make you crazy, and it’s a perfectly normal way to respond to your body being poisoned.  We can only handle it with an ounce of grace if we are aware.  One step over that awareness line and we are depending on instinct.  A hospital room would have been hell, with everyone coming and going all hours of the day for days on end, for me at that time.  If you had put me on chemo on top of that and then taken away my ability to speak clearly I would have made every attempt to escape.  I would have been so agitated you would have had to have 10 nurses on me.  I would have thought that everyone conspiring to keep me there had been abducted my aliens and that I needed to get out so I could save them.  They were clearly the crazy ones.  It would have been the truth from my standpoint at the time.

The steroids they gave me to lessen the nausea made me want to jump out of my skin at the same time the fatigue made me want to collapse into it.  It was like being in your worse state of anxiety and wanting to get up and run away from everything and everyone, while at the same time being unable to even expend enough energy to form a word or walk across the room.  It was incredibly frustrating, and every other second I felt one or the other impulse and sometimes at the same time.  I remember getting up and down off the couch over and over and going nowhere.  My mother could simply sit and watch me.  Occasionally I would yell at her for good measure.  It was something like being skinned alive, but on the emotional level.  However, I had the great fortune of cognitive recognition and believed that the chemo would/might help me.  I also trusted that there was enough time between each treatment to recover just enough so I could handle the next treatment, though I did not always feel that way.  He may not know this at all, in which case it feels like someone else is trying to kill him on top of the struggle he is already experiencing. So if there is a cognitive laps issue combined with the physiological one…   He may only recognize his body’s fight instinct (stay alive and stop letting them poison me) and unconscious flight response and not have access to the conscious analytical system that keeps that fight or flight response in check.  Without it his body and mind tell him to brake bail and make a run for it.  Even with it, you seriously wonder if it’s worth the effort.  Run, that would be the perfectly natural thing to do if you didn’t have the consciousness component working with you. I sure would have! Get me outta here!  I am shaking just writing this and remembering that sensation.  Of course, he wants to get away from it, the lights, the sounds, the hospital…. it feels like the poison it is and unless you can rationalize it why would you make yourself feel worse to feel better?  Any sane person would want to escape that.  I know you are doing everything you can to break through to him, rationalize and reassure him.  Maybe he is already there.  Or maybe he comes and goes.  I don’t know. Maybe share my story.  Tell him that I would have made that run for it with him, but Helen Brown told me to stay put and eat my zucchini cookies until I felt better and eventually I did.  I feel better now and have time to love my family and friends.

I will be in Seattle around July 15th for tests and would love to come see you all if you’re still there.  I want to tell him how much I love him.  How much being a part of his family has meant to me and my sense of belonging to the world. Please share this for now in the event we don’t have this time for whatever reason.  It’s important to say now.  Love to you, your family, mother and brother.

4 thoughts on “What chemo felt like in retrospect/My Uncle”

  1. Kim that was helpful to me now if Roger can learn to speak softly that would help. We will be going up each week to babysit Evelyn so we will be with Vern some days. this will help to know that we need to just sit and be patient with him and ourselves. Let us know when you come up we are staying and Jim’s and it’s fairly close to UW hospital. My Phone # is 1-360-580-4902 We would love to see you!

    Love

    Joan and Roger.

    1. Joan & Roger, thank you. I can’t imagine that Vern would be very quiet if it were Roger either. Those brothers! Yes, I will let you know when I’m up next. Things are going well, aside from being on spin cycle with vertigo, but that’s temporary. Hope to see you in July.

  2. I’ve just started your blog – and I’m loving it! Laura Mundt introduced it to me and told me you’re an LC grad – class of ’90 or ’91?

    I would love to get in touch.

    Suzy

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