Friday, October 18, 2013

The horcrux of chemo

Ok so I am really not amused about the upcoming chemo. In fact I feel kind of sick just thinking about it to be honest. The core of what I am really afraid of is feeling really sick, like deathly sick. I have been there before. I've seen it. I've felt what it felt like to want to be dead. Maybe that won't happen again, I really hope. But it scares me. When I had open heart surgery back in 1996 my blood count got really low. Whatever that is, the number got too low and more too low and then ground level low and then flat on the ground low. One day I had some visitors in the room - and I tried to open my eyes to glance at them in a hello-like manner, and I found that I could not. Open my eyelid. It was too heavy and I felt too sick. I was nauseatingly dehydratedly nauseated and tired and hatefully alive. Then another second went by and that second was dreadful. The breath coming in was a horrible feeling of pain. The breath going out was sickening. Then it happened again. And again. Second after second after minute after minute after hour after hour of miserably awful awfulness and I thought "I wish I were dead" - and the thought of "fighting" to be alive was so distant that it was on another planet. I truly realized that if this was the way to be, or deadness, I'd choose death. It was kind of a comforting thought. An ace in my sleeve. Finally god materialized above me in the form of a doctor who proclaimed that ok I guess we could give her blood. I will spare you the details of the wait for that and the futile IV pricks that happened before the blessed vampire juice flowed it but I will say that it was literally (yes I know that word) amazing when it happened - within an hour I was completely better and up and hungry and me.

Now what is happening to me in a few days is not the same story, but at the core of my fear, is a creeping dread that I will know again what I knew on January 6th 1996. I am going to be given a medicine that is so toxic that it can't be hung from an IV bag - it's "too dangerous to drip" whatever that means. If a drop spills on the nurse it will hurt her. She will have to wear gloves and masks and protective gear to handle it. So the "red devil" will be put in a huge tubular syringe and "pushed in" to me, right to my heart. What if a drop hits the floor? Will the drop of Adriamycin burn through the tile, and then the cement? Will it wend its way down to the next floor, aciding through the plumbing, straight down in a mathematically perfect line right through the air-conditioning unit, will it steam through the ceiling and the light and drip on to the head of a new baby in another room and drill a hole right through the new baby's forehead and the underlying bunny blanket from Target? It's the horcrux of chemo and I am afraid of it.

BUT - Adriamycin is supposed to WORK. The idea is if I do it now, it will kill the cancer and it won't come back. If you ever take it, once, you may never again. So I hope it will work this time. It will never be in my arsenal again. Shoot now? Or hold it in my quiver in case these rogues come back? I choose now.

"Fire all of your guns at once and explode into space."


I found another blog about Adrian. Oops I mean Adriamycin. if you'd like to read it:


Now wait a second Amy I thought you were the one with the great attitude and all that. Well I do feel like I am going to be ok and that I will not die of cancer soon, but I reserve my right to hate this part.

Things to say to someone who has cancer (just a few - there are many more):
What are you going to wear to chemotherapy?
Uh, um, like, um, I dunno what to say, uh (this is dear and darling and special - telling someone you care about that you don't know what to say is acknowledging them and this is absolutely perfect - all the person with cancer wants is to know that you see them)
Thinking about you.
Do you want to hear a horrible joke?
I got you some socks.
What happened today?
Tell me about it.
I read your blog and ______________________.
Did I tell you about so and so and oh my god_____________________!
I will get in touch with Fred/Myrtle (or whoever their partner/secretary/cabana boy is) and find out when I can do this or bring that or whatever
I'm taking your kids to the movies for four hours!
Whassup dude?
What do you think about Obamacare/Kim Kardashian/ACL/space travel/gluten-free diets/that creepy guy/Garrison Keillor/Jon Aeoli/kittens/shrimp fajitas/teen pregnancy/Christmas travel plans/low-waisted jeans and the resulting muffin tops/fancy gin versus cheap/progressive taxation/whole bean coffee/all the hipster crap on South Congress/gay marriage/Facebook/the paleo diet/Emmylou Harris/dubstep/letting teenagers go to concerts alone/Brazilians/Project Runway/bacon/facial cream/the government shutdown/natural childbirth/the 8th grade curriculum/etc. IN OTHER WORDS - WHATEVER THE HELL YOU NORMALLY TALK ABOUT - THE CANCER PATIENT HAS NOT CEASED TO BE A REGULAR PERSON WHO IS STILL INTERESTED IN WHATEVER THEY ARE INTERESTED IN.

Things not to say to someone who has cancer (just a few - there are many more):
Let me know if I can do anything (the person might not need another "to do" action item on their list "letting someone know" is an action item.
Have a great weekend!
Nothing. This is the worst thing. It's truly bizarre and surreal when you run into people that you know know. You know they know. And. They. Say. Nothing. It's kind of terrible.

I think Adriamycin is Yoshimi
Her name is Yoshimi, she's a black belt in karate
Working for the city, she has to discipline her body
'Cause she knows that it's demanding to defeat those evil machines
I know she can beat them
Oh Yoshimi, they don't believe me
But you wouldn't let those robots eat me
Yoshimi, they don't believe me
But you wouldn't let those robots defeat me
Those evil natured robots, they're programmed to destroy us
She's gotta be strong to fight them, so she's taking lots of vitamins
'Cause she knows that it'd be tragic if those evil robots win
I know she can beat them
Oh Yoshimi, they don't believe me
But you wouldn't let those robots eat me
Yoshimi and you're violent
You wouldn't let those robots defeat me
Yoshimi
 - lyrics by The Flaming Lips

23 comments:

  1. I love you! So what are you wearing to chemo? I know when Bill started, it was really really really really long the first time, then each time after that got a bit shorter until it settled out at about 2 hours per infusion every other week. Comfy clothes are in order, and a soft lap blanket <3

    Scared is not a fun place to be, I know. I'm going to start looking up awful jokes for you, it won't take away the scared, but maybe provide a brief diversion.

    Sending spicy hugs.

    p.s. I LOVE your blog!

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    1. Best thing I heard all day - thanks!

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    2. I'll be wearing socks by Macy's, and a sweatshirt ensemble from Ye Olde Navye

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  2. Yoshimi!!! She rocks and we'll get you through this I promise.

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  3. I read your blog and I thought "I can see why Mona really likes this girl. She's funny, intelligent, raw, but mostly irreverent". And I like irreverent. I'm happy for you that you have friends who care about you. And I'm sorry that you're going to feel so crappy :(

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  4. Yoshimi totally made me cry - but with a sense of power- like I could feel the power of your seeing the scary toxin in this relentless way that will ultimately protect you to the core. I have a friend whose life was saved by this same red devil, Yoshimi, and I still have that friend cuz Yoshimi kicked his cancer's ass. His wife says you may give them a call any time.

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    1. Thank you. I'm trying to figure which Kate you are - I know a lot...this blog is so weird cuz I can't tell who is commenting ...?

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    2. Sorry - just saw this. Ward. V's teacher. I figured it would show you the full name. I just made another comment and realized I'd used you're instead of your. Some English teacher I am.

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  5. So what do you think about mom jeans? Especially the ones that are ankle length.

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    1. Not great. There are newer high waisted jeans that are cute but the old fashioned Lee etc jeans - not so cool

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  6. If there were silly times at our Family Reunion, they were all worth it because I got to connect with you. I'm not even sure I would be reading this if it weren't for June. And that was before all of this. I do remember you speculating about how much more dramatic short hair can be. So I wish for you quick growth and dramatic new short hair. But until then, you will have so much to endure it's hard for me to get my head around it.
    I admire that you are so real and raw and honest about your fear. You are inspiring for me. What to say? What not to say? Mostly I just want to say that I'm thinking of you & holding you in my heart as I think of your poor heart helping the red devil do it's deed and clean you out!

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  7. Check this clip -- Bones asks, "What is this, the Middle Ages?" That's what they'll be saying in a hundred years about chemo, just as when we look back at mercury poisoning to treat syphilis.
    http://www.youtube.com/watch?v=MMaGnpVaSGQ

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    1. I love it. Exactly! My doctor told me that in a year or so she thinks they'll drop the Adriamycin forever but simply can't "quote the science yet" to do it now...and that if it were HER she would take it - so I shall too. I do wonder what the future cure will be

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    2. Where we figure out how to enable the immune system to recognize cancer cells and defend against them. As we teachers know, focus on the strengths.

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  8. Nothing worse than the unknown, save for weeks of anticipating the unknown. We will be thinking of you as you endure all of this. I won't ask if you need anything, but be sure to ask if you do.

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  9. You're teaching all of us, Amy. A warrior with her sword held overhead, leading your troops forward. You are Yoshimi.

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  10. <3 You, Amy! Your friend, Margaret, who braved living in Battle Creek, is wonderful! I still want to take you to lunch.

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  11. Ok Amy, fuck all that pain!!! You will not have it. I profess no major pain!! Just because others might have doesn't mean you have to. I believe and I know you believe things will go smoother than Dr expects because of the power of your wonderful spirit. I'm with you in mind and body each day....thinking positive, sending healing energy your way as well as strength for your family through this. They need to pick up the slack and I'm sure they will when time comes or needs. BTW, I think this blog is a little difficult for people because we get an email update from you but can't respond directly from there. Have to open link to get here. Fwiw...n
    Just in case you didn't know. Peace and calm and blessings and strength and courage and healing and laughter and rest and family and friends and faith and trust and hope. May the light shine upon you, for darkness has never overpowered it and it never will.

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    1. Amy, thanks for update, I am thinking of you. When does the chemo start?

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  12. Test comment to see if it notifies me

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