Games

Up for a game? It’s word association game. Easy and fun. (Mostly for me, but whatever…) Ok, so I’m going to say a word, you’re going to say a word. Easy. Trick is, you have to hold it in your head. And when you’re done reading, post it in the comments. K? Thx. (Maybe get a piece of paper right now. lol)

Are you ready?

First word. CHEMO. (Hold it in your head / write it down … whatever you have to do … but you can’t change your word, ok? Can’t.)

Thumbs up
Way to go!

Note: I’m playing this game with you because I watched an interesting interview the other day. The interviewer was asking 4 sets of twins questions about themselves – including how they think. She played this game with each set and it was rather amazing how many they answered the same. It got me thinking about how people think about chemo. 

The Game I’m Playing

This post is going to explore the game of getting this chemo thing right – the balance between managing side effects well and not managing them well. The getting it right. The trial and error. The game. 

Why? I’ll tell you. Yesterday I had my 3rd treatment. (Yup, I’m 1/4th done the chemo! WOOT WOOT!) The day before, in my obligatory pre-treatment meeting, I talked to my Onc (that’s short for Oncologist) about cutting back on some of my pre-meds. Why? Because I think I’m smarter than her?? NOOOOOOO. Because I’M A PERSON THAT DOESN’T LIKE TO TAKE DRUGS. I perseverate about taking an Advil, for Christ’s sake!!

You might wonder … why don’t you just do what they say? Take the drugs? Answer:

  1. I want to be an active participant in my health care.
  2. I want to maximize the good effect of the drugs while minimizing the negative. 
  3. I don’t want to suffer unnecessarily.

How do I Play this Game?

I have to know what the drugs do, then analyze the effects they are having on me, and then see if I can tweak it. I talked about these drugs a bit in a previous post, my apologies. But now I need to say more about them. Here’s my current analysis:

Drug #1 – Paclitaxel (chemotherapy)

  • common name: Taxol
  • purpose: effectively kills breast cancer cells 
  • visuals: clear fluid in a drip bag that comes out of a special door and is checked twice by nurses and once by me
  • dosage: determined by my weight and height – I have ZERO CONTROL over this dosage and treatment plan
  • repeats: 12 (once / week for 12 weeks)
  • what it does to me:
    • triggers the puke response in my brain which to get it the hell out of my body (so far this has resulted in a very sore gut, as I’m not a puker)
    • goes to all fast growing cells and KILLS THEM – cancer, lining of stomach, hair, lining of esophagus, skin, lining of mouth, lining of nasal passages, toenails and fingernails, eyelashes, eyebrows, pubic hair, leg hair (ok you get the idea)
    • heartburn
    • nasal cavity pain
  • positive side effects (aka silver lining): smooth skin, lots of time for reflection, meet new people, look at life differently, increased respect for modern medicine, weight loss (ok, this is hypothetical – it has not happened)
  • worst thing: side effects are cumulative – the drug is not fully eliminated each week – I will feel worse and worse
  • word to best describe it: toxic

Paclitaxel

Drug #2 – Diphenhydramine (“pre-med”)

  • common name: Benedryl
  • purpose: prevents allergic reaction to the solvent that is in the chemo (I know, right?)
  • visuals: long thin hot pink capsule (taken orally just before chemo)
  • dosage: 50 mg (2 pills)
  • repeats: every time I have chemo (12 weeks)
  • what it does to me: can’t talk properly, wobbly, incredibly sleepy, needed an assist to the washroom
  • postive side effects: basically stoned
  • my response: cut it back to 25 mg on Treatment 2
  • result: better 
  • word to best describe it: loopy

pink pill

Drug #3 – Ondansetron (“pre-med”)

  • common name: Zofran
  • purpose: prevents nausea & vomiting by blocking seratonin (which causes vomiting)
  • visuals: oval beige pill (taken orally just before chemo – and I have to remember to bring it)
  • dosage: 16 mg (2 pills)
  • repeats: every time I have chemo (12 weeks)
  • what it does to me: causes me to not have a shit for at least 3 days after taking it and then it’s HELL, PURE HELL 
  • my response: cut it back to 8 mg on Treatment 3 
  • result: earlier gut pain, face is a bit tingly (remember it? … that slightly queasy feeling?), too early to tell you about poops but you can check in with Annie at any time, as I send her poop emojis 
  • word to best describe it: questionable 

ondanestron

Drug #4 – Ranitidine (“pre-med”)

  • common name: Zantac
  • purpose: prevents heartburn by decreasing the amount of acid that the stomach makes  
  • visuals: clear fluid in a drip bag (I got more OTC – over the counter – as well as a stronger one with a script)
  • dosage: no idea
  • repeats: every chemo 
  • what it does to me: mild headache (not sure it’s from this particular drug, but it’s the first side effect listed)
  • my response: enjoy it while it lasts (about 36 hours)
  • result: watch my diet closely 
  • word to best describe it: awesome
zantac
This one I NEED, I know it works, and it doesn’t seem give me other bigger problems.

 

Drug #5 – Dexamethasone (“pre-med”)

  • common name: Decadron 
  • what it really is: corticosteroid 
  • purpose: fights nausea, hypersensitivity
  • visuals: clear fluid in drip bag
  • dosage: 20 mg
  • repeats: every chemo 
  • what it does to me: sleeplessness, hyper in first 48 hours, water retention, stimulates the appetite 
  • what studies say it does: early pre-trial studies demonstrate that Dex is contraindicated for Paclitaxel! WHAAATTTT? This means that the more steroid, the less the Taxol works. So this is a big problem for me!!!! I’m going through this and the Dex is making it less likely to work??? 
  • my response: reduce the steroid as much as possible!
  • result: cut it back by 1/2 to 10 mg on Treatment 3
  • word to best describe it: danger
dex problem
My onc rolled her eyes when I asked her about pre-trial studies that indicate that too much steroid reduces the effectiveness of the Paclitaxel. WHAT?? AN EYE ROLL?? But then she said she’d reduce it by half. HUH?? Maybe she doesn’t like it when patients ask questions and want to take control of their own health. 

Conclusions:

  1. It’s a game of measures. How can I get the greatest effect of the Paclitaxel (chemo) with the least amount of suffering?
  2. It’s challenging, this constant self care!!! 
  3. I bet most chemo patients don’t know half of this shit.
  4. Oncs are human. They get annoyed by patients with questions and demands. (Do I do that with parents who push back?? Do I roll my eyes?? Jesus God I hope not.)

Your final task:

Now that you know more about the game of measures, I’m going to give you another word, and you have to say the first word that comes to mind. Ready? (and yes, that means you’ll have two words…)

CANCER

 Now post your two words! Thx for playing! 

29 thoughts on “Games

    1. Nemo and Boom. I think in pictures, feelings, a word is just a key to finding that whole body experience somewhere in my brain. So Nemo, rhymes with Chemo. My kid’s movie was finding Nemo. Every f’ing Disney movie starts with mom dies. WAIT, you have to keep going, do not get sidetracked. Because mom didn’t die for my son, she just left home. And his dad, just like Nemo’s dad, didn’t cope as well as he might. He fast forwarded through that part anytime he was in the room. But Chemo is like Nemo. You get dealt something to deal with and you do what you are doing right now, you figure it out. You keep exploring and actively engaging and are persistent as you know what and eventually the Universe gives in because it has to agree to say Uncle. And Boom comes before chemo when the feeling of being sucker punched happens when you first hear the word Cancer. Then it’s Nemo or Martin (Nemo’s dad) and you are obviously Nemo all the way.

      1. Best comment ever! I pay attention to the way I talk about and deal with this. I don’t want my kids to be traumatized. I try hard to be just as bossy and weird as I usually am. Seems to be working.

  1. First Question ‘Chemo’: Ian’s Response: Poison
    Second Question ‘Cancer’: Ian’s Response: Loss
    (not too positive I know, but I’ve lost my dad and my wife and of course cousin, uncle… so yeah. LOSS)

  2. Treatment sucks (I’m with Paul on this one). But good for you for speaking up, being informed, and making choices about your health in collaboration with your doctor. From someone who knows, doctors (all of them, even the best) are human, and it should be a foundation of their provision of care to ensure you are informed, consent, and actively participate in these decisions. ❤️

  3. Chemo: challenging (I know you said this in point #2, but I’d made that association before I read that far…honestly!)

    Cancer: new outlook (okay, 2 words)

  4. Language warning:
    Chemo: shitty. Cancer: shittier. Sorry, but those really were my words. I have some baggage, maybe?
    You do know that I’m carrying all of these posts around in my head, right? And sharing them with people I know who are going through this (and keeping them, in case I ever go through this)

    And yeah, face it, we all do the eyeroll sometimes, and then most of us apologize.

    Keep it coming.

    In other news, stopped by North Shore today, and got to see your beautiful boy. It was lovely.

    1. I’m over the eyeroll. I forgive easily. Why not?? Life is short. And ya, everyone does the eyeroll sometimes. 😉

      Glad you find the blog posts shareable!!
      J

  5. Crappy, sucks…..
    Thanks for the treatment room visit yesterday. I LOVE your outlook (1/4 done; that is a “half full” approach!)
    Also love the learning and info I get, everything from amazing cakes to highly effective Digize!
    As my card said, you are one “tough cookie”….

    1. Hey Shelley, thank YOU for your visits to the “suite”. You are like a ray of sunshine in there! So many other people / visitors are shades of beige and grey. And your timing is always great – you manage to visit before the Benedryl completely knocks me out and leaves me unable to keep my eyes open! xoJ

    1. It’s interesting that as I go through this I often think of my dad’s journey with cancer. And Laurel’s too. And Scott’s. I think of how brave they were. I think that they give me strength.

  6. Cancer and sucks
    Hats off for taking as much control of these meds as you can. I’m learning from older people that docs may feel they have your best interest in mind – but what someone else thinks is best is not necessarily what you prefer. Whose life is it, anyway?!
    Self-advocating takes so much energy … like (not) responding to eye rolls. Feel the energy from all of us replenishing you. 💕💕

  7. Chemo – frightening
    Cancer – terrifying
    Having lost a sister and a mother to cancer I know first hand how terrifying and frightening those two words are. I wish I had you in my life when I was going through the challenge as I would have understood so much more about cancer and chemo. Knowing more would have helped to eliminate my fears. Your strength inspires me my friend. Love and hugs

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