Monday, December 5, 2016

CC02: A Dozen Chemo Thoughts

Six Days Down!
Fifteen to Go.

1. If I had to pick a word to describe how I felt each day after chemo this week, it would be tired. (If I had more energy, I would have picked a better word.) I had a lot of different side effects (including minimal nausea, light and noise sensitivity, headaches, and dizziness), but the biggest one was a feeling of constant exhaustion.

2. As exciting as Ambien dreams are supposed to be, sleeping pills haven’t been much help. It’s ironic - all I want is to sleep, but I can’t seem to sleep through a night anymore. I knew this was to be expected, though. A side effect of the steroids they’re giving me is slight insomnia. No news on when the Schwarzenegger muscles will show up.

3. Smell sensitivity has been a big problem for me. I’ve been self-sequestered to our bedroom because downstairs, there are too many smells that might trigger my nausea (our puppy, Tobi, and food smells both have caused issues). Another reason I chose to stay in the bedroom is because I can control the amount of light that comes in. I’m essentially living in the Batcave now.

4. I have renewed a fiery hatred for Gatorade (henceforth dubbed Haterade), which I had to drink consistently in order to replenish lost fluids from chemo. One of the effects of Cisplatin (one of my three main chemo meds) is that it drains your body of electrolytes. I have never enjoyed Haterade, and this only confirmed it. On the plus side, I discovered that Vitamin Water has electrolytes. See ya, Haterade.

 5. Since I had a full week of chemo, I learned that having a routine helped somewhat normalize this experience. Each day, I got a little more used to the routine of driving to the oncology office, getting hooked up, passing the time (by sleeping, writing to my students or watching Netflix documentaries about cats), coming home, eating lunch, and taking a nap. Each day was a different length of time, but they all more or less followed the same pattern, which was a nice spot of consistency during a really strange time.

6. Chairs for chemotherapy patients are the most comfortable chairs in the world.  The infusion chairs are essentially upscale recliners, but each is slightly different. I spent each day finding a new chair until I was comfortable. I would be in a chair for at least three hours, so it was important. I also had to keep my mom’s needs in mind, because she needed a chair with lots of room to spread out (to color in her adult coloring book, obviously).

7. I am a man who loves his food, but sadly, the only meal I can consistently eat and enjoy is lunch. Thankfully, this blow was somewhat softened by the wondrous creation that is Chick-Fil-A chicken nuggets, which I ate for lunch twice this week. I also had extreme cravings for Joe Corbi’s frozen pizza, but those are only available through fundraisers. Luckily, my grandma had some and graciously donated them to me. I think I’m a worthy cause.

8. I am basically a walking pharmacy. I am on approximately a million medicines (compazine pills and sancuso patch for anti-nausea, dexamethasone for steroids, vitamin B6 and B Complex for neuropathy, Ambien for sleeping, baking soda/salt rinse for mouth sores, lotions for skin care, random over the counter drugs for other side effects, etc etc). To add to the ‘old person’ persona I’m creating with midday naps and early meals, I had my mom purchase me a daily pill organizer. 25 going on 85.

9. As much as I don’t want to complain, chemo and cancer still suck. Period. I have had some really bad days, and I’ve had some days that were so-so, which I know is par the course. Chemo isn’t fun. I can’t control that, nor do I want to pretend that this is all rainbows and sunshine. But what I can control is my attitude about this experience. Luckily, as I write this, today has been the best day since I began chemo.

10. To help with keeping a positive attitude, I’ve made a point to wear crazy pajama pants to chemo. It may seem insignificant, but making a goal to interject little things like this keeps my spirits up. I am by far the youngest patient in the oncology center, and I see the smiles in other’s faces as I walk around with my “chemo tree” in Captain America pants.

11. I love hearing feedback from people about my cancer journey. I have heard from numerous people on Twitter who are cheering me on and sharing cancer experiences. Several people have also reached out via email to share their stories and thank me for sharing mine. It feels good to know that, while I wouldn’t choose to have cancer, I can choose to do something positive with it. It's less about getting recognition for myself and more about bringing this issue to a wider audience.

12. One of my favorite moments from week one of chemo was from Mallory on Sunday. I am sick of drinking fluids, even though I know I need them. We were watching Rudolph, specifically the scene where Santa doesn’t want to eat. Mrs. Claus was saying, “Eat, papa, eat!” Mal turned to me, held up my water and said, “Drink, papa, drink!” It was a genuine moment of laughter from me and got me to drink my water all day.

I’m currently undergoing chemotherapy to cure my cancer. Each Monday, I’ll post my thoughts on this experience. These may be reflections on my prior week’s treatments, musings about my newly-altered life, or anything else that comes into my “chemo brain.” Follow along with my journey each week.

10 comments:

  1. OMG, Justin! Cancer aside...this has got to be one of the best blogs I have ever read...seriously! I hate that you have to go through this (insert mad face emoji) and yet reading your blog made me smile (insert smiley emoji). Your blog speaks volumes about your character and your wonderful spirit at your core. I appreciate your honesty and yet love your insertions of humor. Laughter is always good no matter what. Thank you for sharing your journey with us. I look forward to reading next Monday. Until then, hang in there. Only 15 to go...that's better than 16! :) Sending you lots of Wisconsin hugs and love... ~ Heidi

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    1. Heidi, I always welcome and appreciate your support. Stay awesome!

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  2. Keep up that positive attitude Justin! It's a cruddy road to be on. I'm sorry and it sucks :( If you need people to share the load a bit and help keep you going you know where to find a ton of support.
    Excellent post by the way! #8 was of course my favorite :)

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    1. You just liked #8 cause finally you felt youthful compared to me ;)

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  3. Great post mate. Very interesting to hear about your drug cocktail. I'm only going to get one they've mentioned called Carboplatin. The list of side effects is pretty scary. A lot of them seem similar to what you are mentioning. On Monday, I get the um, preserve future fertility material process. On Wednesday I have a GFR (a nuclear medicine renal check). I'm not quite sure why. Did you get one? Anyway, I love your attitude in coping with the repeat process. Bad days are fine too! I hope you don't feel that you have to be strong all the time.

    Cheers

    Rob

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    1. You'll become a walking medical encyclopedia soon! I wonder if Carboplatin is similar to my Cisplatin. Maybe a different world regional thing?

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    2. I think it might be the same thing, just branding. I'll check next week.

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  4. Wow. First, thanks for sharing. As a husband & father of 2 small kids I sometimes worry myself about what if I get sick & the thought of cancer at a young age scares me.
    Reading you're words helps to ease my mind of many of the unknowns and what-ifs that I have. Thank your for sharing!
    BTW killer pjs!

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    1. Thanks for reading, Sean. I want to bring the unknown to the light for this exact reason! Today's PJs are just plaid blue; saving an epic pair for next week.

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