The Problem With Words (Post #23)
So, chemo is fun.
Said no one.
Ever.
I understood, before beginning treatment, that I was essentially declaring chemical warfare on my cancer, and thus, my entire body. It’s been rather unpleasant. I mean, I know war is awful, and my soldiers are just mercenaries hired to get the job done (kill my cancer), but the whole science experiment aspect of things is not pleasant for this control freak. As one friend told me, “I can’t imagine pumping my body full of poison, and then just having to wait and see how your body responds.” Yup. That’s about it. Delightful. 😑
My first infusion was just over a week ago, and, honestly, it’s been a week of self-discovery. Rather humbling self-discovery. The infusion itself (known as Day 1) was easy-peasy, even the frozen mitts and booties were tolerable. I felt a bit wonky that night, but relatively normal. The next day (Day 2) I had a good old-fashioned tummy ache, along with a headache, but managed fine. I thought I was off to a great start! Then on Day 3, the myalgia started. Myalgia is defined as “muscle aches and pain, which can involve ligaments, tendons, and fascia, the soft tissues that connect muscles, bones, and organs.” If Dr. Zhu mentioned this, I wasn’t paying attention. I was assured that I’d suffer fatigue and hair loss and that nausea and/or vomiting were also probable, but there was no discussion about full body aches. To say I was taken by surprise would be a mild understatement. Even my trusty cancer binder full of information let me down! Apparently, it's not common, but some patients get Taxane Syndrome, a reaction to docetaxel. Day 4 brought more myalgia, the promised fatigue, and nausea. 😖
Day 4 was awful. (Updated to reflect the correct day - chemo brain?) Words actually fail
me, which is unusual. I like words. I actually love to play with words. I especially enjoy writing, which, of course, uses words. And I can usually make them cooperate with my brain, but despite knowing more than one language, I find myself unable to describe how I felt on Day 4. Not only did every part of my body ache, muscles, bones, ligaments, organs, skin, etc, made worse by the side effects of a GCSF injection, but I had a discombobulating feeling of impending doom that stole any enthusiasm for the future. Frankly, I was wondering how people survived chemo, and felt much more empathy for those who eschewed it! And I was worried that I wouldn't be able to stick it out through another 15 weeks of treatment. That was the crux of it. I didn't want to give up but was worried I wasn't strong enough to continue. Pain robbed me of coherent thought, so even praying was beyond me. At this point, I cranked the music and let it pray for me. Partial lyrics for “Give Me Jesus” by Danny Gokey are below:
Give me Jesus
Give me Jesus
You can have all this world
But give me Jesus
How am I feeling? Well, let me give you a quick rundown of the side effects I’ve experienced or am experiencing:
Facial flushing - This was a rather wild surprise. I can suddenly look like I’m about to self-combust or sing karaoke, or something. 😡 This may or may not be accompanied by full-body sweats. Oh, and speaking of flushing, I’ll spare you the details, but if you see any good deals on toilet paper or Imodium, please let me know! And did you know that I have to double flush? Yeah. Apparently, I’m toxic. I have to put down the lid before flushing (Duh, I was raised in a barn, not born there!) then flush twice. I’m also not allowed to share towels or anything else for the first week post-infusion.
I mentioned body aches and pains. Again, I don’t think words can accurately describe how painful this actually is. I felt as though I’d gone several rounds with Sugar Ray Leonard…with my hands tied to a hook in the ceiling. My torso was tender to touch and I actually checked for bruising! Of course, there was none. Well, I guess, I shouldn’t say “of course...”
Increased bruising is also a side effect. It hasn’t been too bad, but I’ve noticed an increase in the GBIV colors of the rainbow all over my body.
One side effect I couldn’t find information about was muscle spasms. These were generally limited to my legs and abdomen. As a matter of fact, you can actually see them move! It’s like I’m pregnant with quads who have aspirations to become WWF stars. If you ever want to play a weird game of jiggly whack-a-mole, give me a call! Thankfully, the abdominal spasms went away after the first couple of days.
I’m incapable of regulating my body temperature. At any point in time, you can find me wearing a tank top and shorts, wrapped in an electric blanket while sipping an iced drink. Confused much? I may or may not be wearing fuzzy slippers. I’ve become very adept at taking my temperature, as I’m not allowed to take any antipyretic (fever-reducing medication) without checking my temperature first. A reading of over 38.3C is an automatic trip to the ER, and below that, I’m supposed to wait an hour and recheck…without any meds on board. The risk of infection is ridiculously high, something about knocking out white blood cells? Hence, even a hangnail is cause for concern if it becomes infected. 🙄 (Talk about drama...)
Seams have become my enemy. Shucks, clothes are my enemy! Before chemo, I read an article that insisted that one invest in soft pajamas. I chuckled. I’m not laughing anymore. My neck has a rash where my collar has rubbed against my skin, and my pajamas are ridiculously soft. Oh, and don’t even dream of scratching an itch, you may break open your skin and cause an infection. For real. I don’t expect you to believe me, so…(photo)
Weird rashes abound! Not only do I have a weird flushed/contact dermatitis type rash, but I am sprouting acne in places I didn’t know could grow acne and at a rate that would scandalize adolescent me. Yet, my skin has never been dryer. As in, January in Alberta dry. Just remember, don’t touch!
Weight loss. I’ve always had a rather efficient metabolism, I was just better at out-eating it! Well, I lost ~5 pounds in 6 days. This is not welcome news, which feels weird in itself, but weight loss now is not something to be celebrated as it could mean either a reduced dosage (don’t want) or a delay in treatment (really, really don’t want). I’m praying that new meds will settle my gastritis and allow me to eat a bit more. As someone who has had to exercise self-control with regards to eating in the past, not having any desire to eat at all, is definitely strange.
Related to poor appetite is another side effect, mouth and throat sores. Thankfully, my amazing pharmacist compounded a bottle of Dr. Akabutu’s Mouthwash which helps numb the discomfort. I had no idea you could get sores in your throat…
Taste bud changes. I was warned about this, but again, it’s difficult to explain. Things that have been a favorite my entire life (ice cream) are no longer tasty. Tonight I had a bite of chocolate cake and actually checked to see whether someone had dumped gravy on it - it tasted more savory than sweet! Weirdly, as I chewed, it became sweeter! So yes, eating is an adventure. Sadly, my old standby, peanut butter, is also no longer tasty. 😔
Chemo brain has already settled in, hopefully not to stay. I’m the mother of three, two of whom didn’t sleep through the night until they were 2, so I understand brain fog. I recall making coffee but forgetting either the grounds or the water, losing items quite regularly, and all the other fun activities that accompany Mom Brain. However, it wasn’t until this week that I spent a good 20+ seconds reefing on the tap of the bathtub, wondering why it wasn’t working, only to realize that the arrows and the word “Open” were going the opposite way. I laughed. What else could I do? I was on the honor roll, honest!
Thankfully, the anticipated nausea has been minimal and I only had one bout of projectile vomiting. I’m so very grateful.
Oh, and my hair has started to fall out. This is accompanied by a painful, itchy scalp, so being bald might be a relief!
So suffice to say that I no longer experience the former feeling of disbelief, where I questioned whether or not this was actually my life, that I was actually a cancer patient. There’s no escaping that reality these days. However, this post is not supposed to read as the Second Book of Lamentations. I realize that I’ve basically listed a litany of woes, but this is not a cry for sympathy. My goal when beginning my blog was to keep friends and family up-to-date with my journey and to educate anyone who happens to read it. That is my goal with this information. I had no idea what to expect from chemo and I hope and pray that my experience doesn’t scare anyone away from treatment; that is not my intent. I only want to allow a glimpse into what I’ve affectionately dubbed “Hell Week” (after the worst week of Navy Seal training…I know, I know, feel free to snicker 😊). I could certainly be doing much worse. I’ve heard from other women whose reactions and side effects are much, much worse than mine. I've also read of women who worked throughout their treatment, with only a rare bad day. And honestly, this was just the first battle in a 4-month treatment war. I feel much more prepared for the second infusion, both mentally and pharmaceutically. Not only that but today is Day 8 and I finally feel like myself again! It’s almost uncanny - like I don’t quite recognize my former self.
So where was God this week? Well, remember the poem “Footprints in the Sand?” It’s been going through my mind a lot. The last stanza is fitting:
"My precious child, I love you and will never leave you
Never, ever, during your trials and testings.
When you saw only one set of footprints,
It was then that I carried you."
The night we arrived in Hinton, I kinda' crumped. I regretted going, was in pain, and couldn't get the thought of the drive home out of my mind. (It was fine. Also, I love morphine. 😁) Again, music ministered to my soul as nothing else could. I had the chorus of the song "Tremble" looping through my mind, as that was the only part with which I was familiar. As I'd never read the lyrics, I had no idea how fitting they were! I'm thankful that I learned about the power of the name of Jesus in a new way this past week, even though I'm hoping to never repeat the agony that accompanied the lesson. So thank you for your prayers once again. You prayed me through this past week.
Peace, bring it all to peace
The storms surrounding me
Let it break at Your Name
Still, call the sea to still
The rage in me to still
Every wave at Your Name
Breathe, call these bones to live,
Call these lungs to sing
Once again, I will praise
Your Name is a light that the shadows can't deny
Your Name cannot be overcome
Your Name is alive, forever lifted high
Your Name cannot be overcome
Jesus, Jesus, You make the darkness tremble
Jesus, Jesus, You silence fear
Jesus, Jesus, You make the darkness tremble
Jesus, Jesus
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