• Cheryl

Wednesday "LUMP" Day Fireside Chat: Life On Arimidex

It snowed last night. This morning, the sunshine is bright, but the temperature is still chilly enough that it's taking awhile to melt the thin layer of snow on the ground. It's days like this that I love my fireplace. Casey installed a year or two ago, and it instantly became one of my happy places: in the evenings during the winter, I'll turn it on and curl up in the loveseat in front of it and read until dinnertime. Sometimes it's cold enough - or dreary enough - that we'll turn it on in the morning and leave it on till we go to bed. I love summertime, but this is the time of year I start dreading warmer weather because that means I lose my fireplace till fall.

Today is a fireplace day, and I was pleased when I got up this morning that my body isn't as stiff as I anticipated, which brings me to the topic of today's "Wednesday Lump Day: Breast Cancer Awareness" blog: Arimidex.

I mentioned last week that I need to take an aromatase inhibitor for the next 10 years, as part of my breast cancer treatment. The one I've been prescribed is Arimidex. As of today, I've been on it for exactly 10 months. As with any medication, there are a number of side effects that people may or may not experience, and I'm no exception. Arimidex can raise your cholesterol, and mine is definitely going up, so I need to be careful. Arimidex can cause hot flashes, and I definitely get those, both day and night (I'm still trying to figure out how to manage those - any advice is welcome!). And Arimidex can cause joint and muscle stiffness, which is the first side effect I started experiencing almost right off the bat.

BC - Before Cancer - I wasn't a gym rat, but I was in decent physical shape, especially for my age (I was 47 when I was diagnosed). For years, I'd worked out at home with The FIRM, a company that put out a series of workout videos and training systems and equipment you could use to set up your own home gym, so to speak. They've since gone out of business, but you can still find a lot of their stuff on Amazon or eBay or even at Goodwill, and I SWEAR by them! I was up to doing a lot with 12-pound dumbbells, which doesn't sound like much but kept me as strong and toned as I wanted to be. I'd also taken weekly yoga classes for a couple of years and still did some practice at home now and then, plus I regularly speed-walked on our treadmill, doing two miles in half an hour. I wasn't buff or ripped, but I was active. I felt good physically, and I felt good about the way I looked.

Enter cancer, and that sidelined me during treatment, of course. Once I'd healed from treatment, I underwent a full hysterectomy, which also sidelined me. And while I was recovering from THAT surgery, I started taking Arimidex. It wasn't until August or so of last year that I felt healed and recovered enough from both surgeries and the radiation to start working on getting back into shape. I expected to be stiff and sore since it had been so long, and since I'd lost so much muscle and gained so much scar tissue. And I was certainly stiff and sore. But unlike the normal stiffness and soreness that comes from pushing yourself during a workout, THIS didn't go away in a day or two; in fact, it got worse, and worse, until I felt like I'd been repeatedly run over by a truck. My entire body hurt to move, and my feet and ankles alternated between feeling like they were impaled with white-hot pokers and feeling like they were being bashed with a sledgehammer. At one point, I was standing at the top of the stairs and discovered that I couldn't get down them, because my feet and ankles wouldn't flex to take the steps.

At my one-year "Wellness Clinic" follow-up with my surgical oncologist, I described how I was feeling and learned that this was due to the Arimidex and was actually quite common. And it was compounded by the fact that I now also had no ovaries and was no longer producing estrogen, the lack of which was/is wreaking its own havoc on my body. I kept trying to push through, but I eventually had to accept that my old FIRM workouts were/are now too hard on my body. So was/is speed-walking. And that was a tough pill to swallow, no pun intended. This was the first time in my life I was confronted with something I could no longer do, something that the cancer had taken from me - up till that point, I'd refused to allow it to derail my life. This was a sign of the new normal, and it was hard. I was bitter. I confess that sometimes I still am.

Fortunately, I could still do yoga - in fact, not only could I still do it, but it actually relieved all the stiffness and soreness. I joined a studio in September and began taking between three and five hour-long classes each week: vinyasa, alignment, gentle stretching. It wasn't giving me the muscle tone and sculpted form I'd lost, but it WAS giving me flexibility, stretching all the scar tissue that took up my torso from collarbone to down yonder, kneading my muscles and massaging my joints so that when I got up in the morning, I felt almost like I used to feel. Yoga gave me my body back, and it made me so happy to realize that I could still be ME.

Then came COVID-19. Like all other non-essential businesses, the studio closed. We were ordered home. My yoga DVDs, while good, aren't the same caliber of workout that my classes were, and over the past month, the Armidex has crept back in and taken control again. And not just in my feet and ankles, but throughout my entire body. The longer I'm on it, the worse the stiffness is getting. Anytime I get to my feet, either when getting out of bed or standing up from a chair, I hobble like a 90-year-old woman. I can't walk normally - I have to take very small steps and raise my knees in order to move my feet because my feet and ankles don't like to flex. I can't just crouch down tie my shoe or pick something up off the floor - I have to lower myself very slowly, because it's so painful. My elbows actually hurt to touch. My hands are stiff. And all of this is perfectly normal. Just another day in the life on Arimidex.

It's so frustrating. Casey and I go for long walks every so often when the weather permits, and that helps loosen me up a bit. I do my yoga DVDs, and they help a little. I've been doing the "50 Squats A Day" quarantine challenge. But none of it is enough to get me back to where I'd gotten myself by early March. I hate the way I feel. I hate the way I look. I hate all my flab that used to be muscle. I hate all my weakness that used to be strength.

So yesterday, I decided to see if I could maybe EEEAAASSSEE my way back into my weight training - not jumping back into my FIRM workouts, but just doing some weightlifting exercises on my own, very short sets with little to no weights to start. Maybe if I SSLLOOWWLLYY build up my strength over an extended period of time, rather than pushing myself to get back to my former physique as soon as possible and assuming that I can naturally do what I used to be able to do easily, it won't be so bad. So that's what I did yesterday - my daily 50 squats (no weights), a few yoga stretches, and then a range of upper- and lower-body moves, using three-pound dumbbells for my arms and no weights at all for my legs and ankles. And I went to bed last night wondering just how I'd feel this morning.

When I got out of bed, I could walk fairly easily. This. Is. AWESOME! So I'll do yoga tonight, and try weights again tomorrow. I'll take it day by day.

I've been doing some research on Arimidex and learned that some people do better on generic forms produced by different manufacturers. This is something I'm going to bring up with my medical oncologist the next time I see her - maybe taking Arimidex made by a different manufacturer will lessen my side effects and make them more bearable.

I'll be honest - there are times I consider quitting the medication and taking my chances with recurrence. My particular risk percentage is relatively low. What if I'm going through all this for nothing? But there's no way to be certain of that. There's no way to know if, after ten years, my cancer never comes back because of the Arimidex or just because it was never destined to. And if I were to take myself off the medication and one day hear "You have breast cancer" again, I would always wonder if it was my own fault - if I could've prevented it by just sucking it up and dealing with how awful I felt. So I continue to take that tiny white pill every day. To me, it's not worth the risk.

The coronavirus will eventually go away. The yoga studio will eventually reopen. And in the meantime, I'll keep experimenting at home to see how best to push myself physically and get back to my old self and feel good again. NOT being physically active, and not being physically fit - or as physically fit as I can possible be right now - isn't an option for me. It's a challenge, but I don't want to give up. I don't want cancer to take it away from me for good.

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