This might not sound like a very big deal to you, but yesterday, I was able to give a near-perfect thumbs up. That got me pretty excited because for the past four months, I haven’t been able to straighten my thumbs, at all.
In February, I developed a reaction to letrozole, a hormone-blocking drug I’ve been on since finishing treatment for breast cancer in October. I’d been taking the drug for four months without any side effects but in February, for some reason, that changed.
It started with the mid joint in my right thumb clicking and moving sideways as if it was coming out of the socket. It wasn’t painful, at first, but it was truly weird to watch. A few days later, a burning sensation settled into the joint, and then, soon after, the same thing started to happen in my left thumb.
I knew that joint pain is a common side effect that many women experience when taking letrozole, so I phoned the pharmacist at the Cross Cancer Hospital with my concerns. She felt that if it was drug-related, it would’ve shown up sooner but suggested I go off the drug for two weeks to see if things changed. Nothing did. I could still watch my thumbs slide sideways but I used naproxen, an anti-inflammatory, to deal with the pain and resumed taking the letrozole.
In March, my dad died and COVID hit. I dealt with grief, funeral arrangements and pandemic fear all at once. The chaos helped take my mind off the pain in my hands, but in April, as I began to clean out dad’s house and do some repairs, my joints made it very clear that they weren’t liking what I was asking them to do.
By May, I can’t bend my thumbs and the joints begin to change shape. Soon, the rest of my fingers swell and other joints start to complain. Pain shoots through the bones in the top of my feet, my hip sockets feel restless and my right shoulder starts to ache at night.
It’s mid-pandemic and Dr. Hinshaw gives daily updates of infection and death rates and tells us to stay home. I’m alone at my dad’s house in Lacombe, so I stay put and increase the amount of naproxen to help address the pain, but the pain just gets worse. I acquire all the personal protection equipment I can get my hands on and drive to Edmonton to see my doctor who prescribes a stronger dose of naproxen. After seven days, I call her, crying. The new meds aren’t helping. Back I go for a different prescription with the hopes that these pills will do a better job.
There is still a lot of work to be done on dad’s house but all of my siblings at this point are either back to work or unable to travel, so I continue on my own. I repair what’s broken, fill nail holes and paint walls; I sell off furniture and take care of the lawn and garden. At the end of the day, I slather on analgesic cream, wrap my body parts in ice packs and soak in an Epsom salt bath. At night, I toss and turn in bed trying to find a position that doesn’t hurt. To pull the blanket around me, I clasp the material between the palms of both hands and pull with all my might. I’m worried at how much strength and dexterity I’ve lost in my hands.
Dad was 89 when he died. His body had been through a lot and the way he walked showed it. The older he got, the slower he got. He hunched more and picked up his feet less. I am quite sure that I’m starting to look like him. Getting out of bed takes huge effort. I feel beat up and old.
I go to a cannabis store and enquire about CBD oil. The dose the employee recommends does nothing and by the end of the week, I’m taking three times the suggested amount. I try smoking weed. Again, it does nothing. Twice, I swallow the new pain meds with a shot of vodka. It allows me to sleep for a couple of hours but I wake up to my conscience telling me that the rock star approach to numbing myself isn’t the answer.
Gripping smaller items is near impossible. I can’t do up buttons or the hook and eye closures on a bra. I can’t pull up jeans or tie shoelaces. Elastic has become my friend. It’s hard to hold a screwdriver and the pressure of pliers or scissors on my thumb joints just about drops me to my knees.
One day, I reach up to paint the area above the window when my fingers just give up. The brush falls on my face and lands with a splatter on the floor. I stand there exhausted and exasperated as I wipe off the paint and tears in one motion. Later, in an attempt to secure blinds at the top of the window, I drop the screwdriver and it goes like a lawn dart into my foot.
A few days later, the pain shows up in my neck and ribs. I’m certain that what I’ve got is rheumatoid arthritis because, one: I have all the indicators and two, it’s 2020—developing an autoimmune disease amidst a pandemic would be the icing on this shitstorm cake of a year. I call my doctor and request to be tested.
After hours of lab tests and an EKG, the results show nothing to indicate rheumatoid arthritis. That’s great news, so what’s the deal with this pain? I want to scream.
My doctor prescribes a five-day dose of prednisone, a corticosteroid that suppresses the immune system and decreases inflammation. Again, with the immune system! There are no ifs ands or buts about me self-isolating at this point; I’m not going anywhere.
It takes only one pill for me to feel relief. By the second day, I’m able to squat in the garden to pull weeds. I’m overjoyed. By day five, the pain is minimal, and I feel confident that I can now stay on top of any residual pain with the first level of naproxen I’d been taking up until things got crazy.
Wishful thinking.
In less than a week, the pain is back and its more ferocious than ever. It feels like my bones are on fire and the joints are exploding.
I phone my doctor and leave a detailed message. I need help, stat. The next day, she calls back to say her research confirms it’s definitely letrozole related. Officially, it’s called arthralgia, she says, and 20% of women taking this drug experience some form of it. A small percentage have an extreme reaction. My case is one of those few. Nice.
I’m frustrated that my initial call in February didn’t yield these results, but in hindsight, I also wasn’t writhing in pain and chasing anti-inflammatories with vodka then, either.
My doctor suggests I go off letrozole for up to six weeks to really make a difference. This means going without the hormone blocker that keeps out the estrogen that my type of breast cancer considered a fuel source. Is it a chance worth taking until we can find a different blocker? Yes, I say. I want to stop hurting, and I need to sleep.
She prescribes a tapered dose of prednisone: over a four-week period, I will take 161 pills starting with 10 pills per day for the first week.
The relief, again, is almost immediate. I feel the best I’ve felt in five months and what’s more, I feel hopeful. The fog lifts and I realize how miserable I’d been with what had become chronic pain.
I also realize how sneakily depression had crept in. I lost my will to write—not that it mattered; I couldn’t write anyway. My fingers were so swollen, they’d hit two keys at once. It took me three days to write one sentence. To actually write a full article was completely overwhelming. My brain felt like it was encased in cement.
Like everyone, I’d lost any sense of normalcy, and like so many people, I lost work, too, but on top of that, I lost my father and now, my physical and mental health was in a perilous state. The grief from the collective loss was like a cast iron pan to the head. It dulled everything I had going on…everything but this godawful pain that hung on like a pitbull in a game of tug-of-war.
I try all the homeopathic methods, too. My cupboards now hold enough capsules of collagen and liquid Omega 3 oil to grease these pipes for years.
I can almost bend my thumbs, I write in my journal after the third day taking the tapered dose of prednisone. By the fourth day, I can move every finger, fast, like someone working the valves of a trumpet. I can use a hammer (with one hand!) and I can get out of bed without wincing.
What I still can’t do is work the buttons on my jeans or the clamp things on pant hangers. I can’t operate a corkscrew, squeeze a lime or change the gears on my bike, and I won’t be playing thumb wars, probably ever but with continued physio (I literally twiddle my thumbs twice a day for 10 minutes), I hope that soon, I’ll be throwing my thumbs up faster than the Fonz, himself.
I wanted to write this post for a few reasons: I needed to get the motor running again and prove to myself that I can form a sentence and get a paragraph written in less than a week. Secondly, I wanted to encourage people to listen to their body and seek answers from medical professionals when you know something isn’t right, and thirdly, for women experiencing bone pain side effects from letrozole, please don’t let it get to the point where you’re sitting on your deck, naked beneath a bath towel, sobbing into a mason jar of alcohol. That’s just not a good scenario on all sorts of levels.
To those enduring chronic physical or emotional pain: I see you. If I take anything from my experience, let it be to practise more empathy. And for those who are still reading, I hope you feel the same: in the fallout of divisive politics, in the face of privilege versus inequality, and in the quiet suffering of those who don’t show it: the world needs empathy now, more than ever.
Thank you so much for writing this! I most certainly read it to the end. I hope you continue to get relief and stay healthy. 2020 will be most definitely one of the worst of years for so many reasons.
Thanks, Kris. Is it New Years Eve yet? lol … can’t wait to put this one to rest.
Twyla there is a instrument I call it a button holer that will help you do up buttons on your shirts or pants. Works wonders. Do you have an OT friend. They will know where to get one.
I could’ve used that button holer a few months back, for sure! I’m good now, thankfully. Whew.
Thinking of you Twyla and my heart hurts for what you have had to endure. May you know you are in my thoughts and prayers and I hold you in my love.
That’s so lovely. Thank you, Lynette xo
I needed to hear this today. Thank you. I enjoy your posts. May you continue to face your recovery(ies) with grace and the knowledge that others are feeling validated by your honest, thoughtful words. May many blessings come your way and dampen the shitstorm of the year 2020.
I really appreciate that, Marilyn. And yeah, 2020 can go suck it.
Jesus, Twyla… This is terrible. I’m happy you’re feeling better but what the hell have you been going through? Sending you a firm but gentle hug.
Some might say I’m being tested, but for what, I’m not sure: Hunger Games? Battle of the Amazons? Zombie Apocalypse? Whatever it is, I’m READY. Thanks for the hug 🙂
Sorry to hear you’ve been going through all of this. You finally get through one thing to get another. Hope youre recovery continues to get better and you can get back to normal routines. Get those siblings to help. You cant do it all. Wish I was closer so I could help. Thinking about yiu. Take care cuz!💝
Thanks Sherry…Just a couple of things left to do and I’m feeling MUCH better. I got this! 😀
Again Twyla, you have transformed your personal hurt into a shared healing response. Thank you. We all are benefactors of your insight. I’m sending hugs with a true understanding of your circumstances.❤️❤️❤️❤️❤️
Thank you so much, Michael… too often we don’t want to be a bother, and we don’t want to go see a doctor because we think we’ll just “get over it”. I just want women on letrozole to know that this side effect can be a monster and to not let it get to the point where it did for me. And to also go easier on yourself when you’re hurting. Why do we think we need to be SO TOUGH? Oy. Thx for the hug. xoxo
There is NOTHING worse than chronic pain. It changes you, your life. I too have been experiencing this and been turning to so many types of relief with nothing working. It’s not from the drug you talk about, and still trying to get to the bottom of it. Not participating in the things we enjoy in life is devestating. Thanks for sharing and shedding light on this. As women, we often suffer in silence. Thanks for speaking up. Hope my pain goes away soon too.
I’m sorry to hear of your situation. I completely understand how you’re feeling … I had some enlightenment through Dr. Gabor Maté’s books (especially the one, Hidden stress, When the Body Says No). I’d highly recommend reading it if you haven’t yet. I hope you get some respite, Alison.
Twyla I am so glad you’re on the mend and have alleviated your source of pain. None of us know what the other is experiencing until we bravely share. Thank you.
Thanks, I appreciate that, and you’re right. Everyone has something going on, we need to be kinder.