When I was first diagnosed with Leukaemia, almost exactly four years ago, I wrote a series of blog posts.
My head was full of a million things, as tends to happen when someone tells you that you have cancer. It’s like a brain explosion of questions looking for answers; fear, looking for reassurance; panic, desperately seeking calm. It’s every single thought and feeling all happening at the exact.same.time.
Don’t bother looking for those post-diagnosis entries here though. With the exception of this one, I didn’t publish any of them.
Originally, my plan was to file them all under the moniker, “Stupid things you do when you’re diagnosed with cancer.” But once I published the first one it occurred to me that—actually—the myriad thoughts and feelings running rampant in my brain and body were anything but stupid. They were a genuinely legitimate reaction to traumatic news.
In fact, once I gave it a healthy dose of self-reflection, (true to my “act first, think later” nature) I figured that anyone who has been diagnosed with cancer might be really offended at having their personal experiences filed under the “Stupid” category. Of course, I was writing about my experiences, not those of others, but still, maybe there would be resonance?
So, I tucked those posts away and chalked it up to yet another stupid thing I did when I was diagnosed with cancer. Yes, I see the irony.
At one point, I thought about renaming the posts: Understandable things you do when you’re diagnosed with cancer, or Perfectly Reasonable things you do when you’re diagnosed with cancer…but those don’t quite have the same sort of catchy ring to them, do they?
Nobody wants to hear about perfectly reasonable responses to life’s events. And, quite truthfully, that would really minimize the things I could write about on a daily basis.
So, why do I bring all this up now? Excellent question!
My hair follicles feel like they are spontaneously combusting. There are a gazillion tiny little explosions happening all over my scalp and I’m trying desperately to not scratch every little itch and tickle.
In short, my hair is falling out.
And how does this tie into previously stupid/understandable/perfectly reasonable things I’ve done before? Another excellent question!
When I was diagnosed almost four years ago, I went hat shopping. Because, of the million thoughts and feelings running through my head at the time, one of the loudest of them was, I’m going to need a hat because chemo will make my hair fall out and I will be bald.
Perfectly reasonable, am I right?
I’m not even sure that it was the bald part that evoked as much panic in me as it was the fact that I look terrible in hats. Seriously. Terrible.
It was one of the things I wrote about in that series of unpublished posts.
Growing up in the Great White North, I never really had the need for anything other than a toque in winter and the one time I had tried to shop for a hat—fourteen years earlier—ended in disaster…
I needed a hat for my first tropical vacation. I had tried a few on my own when I was out and about but didn’t really find a style that suited me. A good friend who, coincidentally, looks fabulous in every type of hat, laughed off my concern.
“Don’t be silly,” she said matter-of-factly. “You’re beautiful, of course you look good in hats!” And so we went hat shopping together.
Ever the optimist, she brought me the most current styles to try on in the colours that suited my skin tone.
It wasn’t long before she realized that I might actually be on to something. And the shopping event deteriorated rapidly into her bringing me every concoction of fabric and material that even slightly resembled a hat and then laughing until she was doubled over and could no longer breathe.
Laughing at me, in that hat. And the next hat. And the next hat. Until, after several hours of hilarity at my expense, she declared, “You’re right. You DON’T look good in hats!”
Of course, naturally, this memory came flooding back as I contemplated having to repeat this traumatic episode all over again in earnest. Because I would be bald.
So, here we are, my follicles erupting and strands of hair cover the back of my shirt like lava flow as I write this post.
And do you want to know the worst part?
After all the mental agony of processing this potential event both four years ago and more recently, when we decided to go ahead with chemo, I still don’t have a hat.
I don’t even have a toque, because after years of trying to find one that didn’t make me resemble the Pillsbury Doughboy or the Michelin Man, I ended up just buying ear covers. After all, I had a head full of hair; I just needed something to keep the extremities warm.
And so here I sit. Hatless and losing hair by the handful. In an October that, where I live—inexplicably—is looking more and more like the dead of winter.
In all seriousness, my doctor has suggested that though it will significantly thin, I will likely not lose all my hair. My team pharmacist’s opinion differs a bit. She says that we really don’t know that for sure, it’s different from person to person and it’s hard to determine where the hair will fall out and in what pattern (evenly vs. clumps). (But, she offered to write me a prescription for a wig, should I need one. Phew!)
My girls are kind of excited to kit me out with various rainbow-coloured options, just for fun. I admit it might be nice to try some colours other than white for a change. We’ll see how it goes.
Or maybe I’ll just give hat-shopping one more earnest try?
Never having walked this road before, I don’t know what’s normal or to be expected and what’s not–other than what I’ve been told. Each new or different thing presents yet another opportunity to be a beginner all over again. In short, I’m still chewing on baby food here, people.
After a couple of really good weeks, I hit a small bump in the road last week and ended up in the ER on Wednesday to determine the cause of a mystery fever.
One of the side-effects of the chemo is that, in addition to killing the cancer cells, it also effectively kills some good cells too: which means that my immune system is a little compromised. In short, I’m susceptible to infection. A tiny cold can rapidly become pneumonia without the ability to fight. (But they keep telling me to live my life, so I’m trying to balance these two things: living and not dying.)
The hospital ran a battery of tests to rule out any infection, gave me some good drugs to kick the fever and a splitting headache, and sent me home to recover. I had a couple of frustrating days at home, feeling generally unwell and anxiety-ridden. But, after a weekend of rest, I’m feeling a million times better and re-assured that the chemo is doing what it’s supposed to be doing.
Round Two starts at the end of this week and I covet your prayers and good thoughts as we head into more unknowns and new beginnings. All the IV Cytotoxins will be given on the same day, instead of over two days, as with Round One. That’s new. And I’ll have two days of oral drugs at home, which I am determined to manage better (having learned the benefits of split dosing after last month’s all-twenty-pills-at-once failed experiment). If you didn’t hear about that, I wrote a little update about in this Instagram post.
My plan for the weekend is to lay low and take it easy.
Plus, a couple of sort-of-related things on my mind
Speaking of laying low and taking it easy, I’ve finished binge-watching Call the Midwife and need some good recommendations to pass some downtime. (I’m not a fan of anything gruesome, morbid or horror-filled, so you can pass on recommending anything resembling those) Thanks in advance. Go!
When not binge-watching Netflix, I’ve managed to do a good chunk of reading and will be updating my book review posts on Instagram soon because I am so.far.behind. It’s not a terrible problem to have.
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I’m doing my best at navigating the twists and turns of this life with faith, hope and humour. I’d be so honoured to share the journey with you. Putting one foot in front of the other, and—hopefully—not in my mouth.
Based on my previous track record, I don’t promise that my posts will be consistent, or inconsistent, but I’ll try for amusing. At the very least, I hope you’ll come away encouraged.
Thanks so much for visiting,