Observations on Chemotherapy- Living With Lymphoma Week 7.5

Blech...

Blech…

I thought an end of the week wrap-up might be good since I finished my first week of Chemotherapy this week.  There are several things that I hope will be insightful to both those headed for this process and for those of you who have seen it, but never experienced it yourself.

I wasn’t sure what to expect with the chemo.  I knew I would be sick, but how sick was sick?  Were we talking “Oh crap, I’ve got the flu,” or were we talking “I’ve got Meningitis and I’m sick as a dog?”

Meningitis is going to be my measuring stick since that is just about the sickest I have ever been.  I contracted it during my recovery from the Acoustic Neuroma surgery, and it was MISERABLE (you can check out how miserable, including the Spinal Tap I got on my birthday in the brain tumor book)

So how was the first week of chemo?  (and note that I all statements about this stuff are “so far”, as I’m sure it will get worse)

Flu sick.  Really nasty, yucky, probably Bird or Swine bad: Flu.  At least with all the Zofran and Ativan they had me on.  Add to the flu a bucket of thick, wet concrete in the pit of your stomach?  And you’ve got my first three days after chemo.

Now, don’t get me wrong – this was no Cancer Pride Parade or anything.  Sitting on the couch wondering if you are about to barf in your lap in the next instant for three days is no fun.  Blech.  The first two days, especially, were very much stomach based.  By Thursday the stomach stuff eased off a little and the headaches and dizziness took over.  My guess is that the headaches were probably there the whole time, but only when the stomach stuff calmed down did I notice them.

The weirdest thing about the whole week was that I’d wake up every day feeling pretty good.  This isn’t so bad, I’d think.  Then spend the rest of the day plunging into the depths of discomfort.

The Lovely Bride and I do learn our lessons well.  The “Skillet for 2” type meals that we had gotten were perfect.  She was able to prepare them without issue and it was a good serving size to keep me from putting too much in my stomach at once.  Having her able (and willing) to make dinner was really nice when I felt like complete crap.  And no cold, lumpy tomato soup this time.

One thing I learned this week was that no matter how many times you hear the phrase, “Don’t forget that chemo doesn’t just kill the bad cells, it kills a lot of the good ones, too” — you have not the slightest idea what that means until you have felt it mess with the lining of your stomach…

Speaking of stomachs and digestion – I need to touch on the importance of hydration during chemo for anyone headed for this process (bodily function warning for those of you not dealing with chemo).  STAY HYDRATED.  And I’m talking really well hydrated, here.  Why is it so important?  Basic hydration is important for your health, obviously, but it’s also extremely important to your digestive tract.  Turns out Zofran (anti-nausea) doesn’t just try to keep things from ejecting from the top end – it has the same effect at the other end as well.  So what, you ask?  I found that it made the sick feelings much worse.  Take all the creepy pills they tell you to help with it and get as far ahead of your hydration as you can.  Forewarned and all that…

There have been some interesting tangential conversations and effects of the past week, as well.

First, thank you for sharing my experience – keep in mind that the goal of all these articles and posts is to help new and future patients get a feel for one person’s experience.  The medical community is great at treating us, but not always spectacular at communicating things on personal terms.  Even though my experience might differ from that of someone else, it will at least lay the groundwork to help them prepare.  So for their sake?  Keep sharing!

Then, I had a conversation with someone this week about the fact that they felt uncomfortable posting fun or happy things they were doing on Facebook while I was sick.  Good grief, don’t do that.  I had some great advice from an old saxophone player once – he told me that everyone’s experience is different.  Don’t dwell in it, man, embrace it.  The world didn’t stop turning when I saw that PET Scan (though it might have paused a bit for me), so don’t let yours stop, either.  Besides, I like seeing what everyone is doing while I’m keeping my bucket company.

I found myself wishing that I was working on my fiction writing instead of talking about all this lymphoma crap.  Then I remembered the number of people who have contacted me about how the brain tumor book inspired them or helped them prepare.  I think this is more important writing than my hero saving us from whatever.  So – the fiction stuff can wait – or just get fit in where there’s time.

Crazy Meme Lady strikes again!

Crazy Meme Lady strikes again!

I joked early on about how this was going to be a good weight loss program.  I had no idea.  I lost five pounds this week.  Good thing? YES.  Need to get control over it? ABSOLUTELY.  I need to lose some weight – I’m even a fat guy according to the government.  Problem?  I think I’m probably losing muscle mass and other “good” weight.

Solution?  I need to get me to the nunnery.  Wait – that’s not right.  I need to go to the gym and get back on the bike.  There, that’s what I meant.

Our new apartment complex has a nice fitness center, and I have my bike with the stationary trainer in the apartment.  I’m hoping the combination of those two things will both keep my strength up during chemo and help my body find a healthy weight to settle into as we progress.  Of course, that still requires me to be motivated to do it… But the thought of riding my bike next year at a good, healthy weight should keep me motivated.

 

So – how do we wrap up the first week of chemotherapy?

Lessons learned:

  • Stay hydrated!
  • Take your meds as scheduled – the Drs know what they’re talking about!
  • Worry less – even though you’ll be sick, you can handle it – I promise.  I found the nerves just made it worse.
  • Be ready domestically – laundry done? meals figured out or ready? dog/kids/etc… all planned for?
  • Exercise when you feel up to it – I really think that’s going to help.
  • Try not to go Code Blue during the infusion… (if you missed that, you can find it here)

Thanks again for all the kind comments, prayers, and well wishes.  The Lovely Bride and I are doing okay – we’re just taking it one day at a time for now.

Don’t forget to keep sharing 😉

5 Responses to Observations on Chemotherapy- Living With Lymphoma Week 7.5

  1. Patricia April 19, 2014 at 9:39 am #

    I am the person worried about posting fun things to soMe. I am Chiris’s sister and living large in Japan. I feel so bad posting the fun things I am doing but also know he wants me to live large and share it with him. I appreciate any feedback on this because it is tearing me apart.

    • sandy naglowsky April 19, 2014 at 8:55 pm #

      Awww Patricia , what a thoughtful sister .I am with Chris on this one. I bet he enjoys everyones escapades of daily life to take his mind off his problems if only for a little while. Even I would love to hear all about Japan…lol—keep him entertained

  2. Barb & Jim Whited April 19, 2014 at 12:49 pm #

    Hey Chris, have you read up on our bodies ‘fight or flight response’? It is a common physi/emotional response to stress/fear and I know another person in SMSA who has it with hospitals and needles. In an ER situation after sailing, he almost went south because of the severe BP drop. Don’t know if anyone has talked to you about this, but read on it and maybe the docs will have something to help with it. Like putting on ear phones and playing music you really like to keep your head on something else while they set up the infusions. Just an idea. Here’s the Wiki link: http://en.wikipedia.org/wiki/Fight-or-flight_response

    • cmichaelmiller April 19, 2014 at 4:25 pm #

      Thanks Barb, I’ll check it out. I think they are just going to install a port to avoid having to mess with the whole IV thing entirely. It will just be one more thing for the Crazy Meme Lady to play with.

      Now – who can help Pat? Lovely Bride and I are pretty deep in the well and don’t have much time for looking around, so I think it’s actually harder emotionally for people watching from a distance…

  3. Miki & Tom April 20, 2014 at 9:59 pm #

    Hey Patricia, just be yourself, and all that entails. Chris is holding up his end of the bargain. And Chris, keeping your sense of humor is key — we enjoy reading your ramblings around all that difficult chemo — you are the quintessential survivor!

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