(Almost) Six Months on Letrozole

WARNING: IF YOU ARE STARTING ON AN AROMATASE INHIBITOR, I highly recommend that you not read this and instead give yourself the chance to gauge the medication’s effects without being influenced by someone else’s experiences. Note that I started letrozole just out of menopause, so my side effects from this drug have been more dramatic than they might be for a women who’s been postmenopausal for longer.

First a bit about aromatase inhibitors: according to breastcancer.org, “Aromatase inhibitors work by blocking the enzyme aromatase, which turns the hormone androgen into small amounts of estrogen in the body. This means that less estrogen is available to stimulate the growth of hormone-receptor-positive breast cancer cells.” Think of this as starving a hormone-positive cancer of its food.

Aromatase inhibitors have been shown to be more effective than tamoxifen, with fewer serious side effects, although they are certainly not risk-free as they can cause “more heart problems, more bone loss (osteoporosis), and more broken bones than tamoxifen.” (breastcancer.org)

When it was time to start letrozole, I took a different tack than when I began tamoxifen. For the latter drug, I did all the research I could, researching relevant studies, digging into possible side effects and visiting lots of forums to learn about what other women were experiencing.

I wish I hadn’t. I think all the negatives affected my perception and made me anxious about taking the medication.

The letrozole pill looks so teeny and cute – how bad could the side effects be?

So after two years of tamoxifen, when my hormone levels suggested that I was postmenopausal and it was time to switch to an aromatase inhibitor, I stayed away from clinical literature about letrozole. I decided to give it a chance, since my oncologist felt that I had confused the effects of anxiety about taking tamoxifen with the actual effects of tamoxifen.

Okay, then. As I was leaving my oncologist’s office, letrozole prescription in hand, he added that some women complain of “joint pain”. I think he felt it was his duty to warn me.

My experience? I’m finding it harder to recover from workouts. I train with free weights and am a rower (currently, indoor) and the change in my resilience and stamina is striking. In 2018, a year after finishing up chemo, I was able to power through tough workouts and felt like I’d gotten most of my pre-cancer strength back.

Fast-forward to now, just two years later, I feel old. My joints are creakier and I’m having increased muscle pain and overall stiffness. I’m experiencing bone pain in the leg that I broke skateboarding when I was 12. Yeah, I push through workouts, but they’re taking their toll on me.

I’m fortunate to have a full complement of gym equipment at home, so the COVID-19 lockdown didn’t hinder my workouts. To get some fresh air, I incorporated more hiking into my routine, in addition to my regular workouts.

It was too much and left me with hip pain that made it difficult to fall asleep. So I took a rare break from vigorous workouts and for two weeks incorporated more gentle movements and focused on yoga, which I had been doing intermittently.

When I started ramping back up, I didn’t feel rested, I felt weak! Weights that had been easy to lift a couple of weeks before felt challenging. I had to restart the process of building my strength. You could pass it off as simply “age”, but I’m only 54, and the drop in strength and energy has felt precipitous, even demoralizing. While it’s true that I went through menopause during the last two years, it was a medication-induced menopause and I was literally shoved through the change.

Letrozole has been shown to be very effective in preventing cancer recurrence, presumably because it works to keep estrogen levels low. However, most women on letrozole are in their 60s and have been postmenopausal for a number of years. For a woman in her 50s, the aging effect of estrogen suppression has felt dramatic.

My libido dipped even lower than I’d experienced with tamoxifen, something I was warned about by my GP and gynocologist (both females). My male oncologist didn’t talk about it. I believe this is a seriously underreported side effect of aromatase inhibitors and one that many women suffer from in silence, because they don’t feel comfortable bringing it up.

Likewise, I feel my appearance changed. Now, this may simply be my perception of myself, as my post-chemo hair transitioned from super-cool and spikey to thin and limp (and, now, untrimmed!), and my eyebrows never recovered. But it’s not just in my head: A bus driver recently tried to offer me a senior citizen discount, whereas four years ago someone had told me they thought I was in my late 30s! That’s a big difference. The fact that the lack of estrogen is making me look like I’m older than I really am has become distressing:

And that difference is felt in my relationship with my family. There have been times that I’ve looked at my husband (four years my junior) and my high school-aged kids, and I feel like don’t belong with them. I feel like a stranger, an old lady that’s just hanging around. That hurts a lot.

And on my worst days, I feel dark clouds rolling in, bringing with them frustration and hopelessness. Is it letrozole or menopause? Does it even matter? Take a woman, throw her in a bag, tie it to a tree branch and then beat it with a stick. That is how I feel when I have to take a pill that does these things to me. No control, no future, lots of pain. The longer that I continue with medications like this, the more I feel that they are pointless, since I’m starting to not care whether or not the cancer comes back. And that’s the worst side effect of all.

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So, this blog is about being honest about the cancer experience. But it’s also about mindfulness. I have to open the door and let the negative feelings into the room so that I can offer them compassion and a kind ear. I sit with them for a while, and eventually, I feel better.

Floating Above It: A Visualization

Sometimes, you really need to get away.

I’ve written about pulling back to get perspective, but this isn’t about that. There are times that you can’t handle looking at a situation, and even less getting close and curious about it. Once in a while, you need to cut your losses and allow yourself to check out for a bit.

From time to time, I have dreams in which I’m fighting an adversary (like a monster), and I leap up into the air and float over the baddie’s head. Not all the way up into the sky, but just-just-just out of reach of their clawing hands, where I’m safe.

That’s what it feels like to release my hold on the earth and allow myself to imagine floating upwards. It is a freeing and positive feeling, often helped by music containing binaural beats and a gentle relaxing drone, as if I were being softly cradled and rocked by the sounds.

Be a bird, just for a little while.

And then I travel. In my mind, the most pleasant view is that over the water, as if a camera had been set free to follow a broad river, meandering along its twists and turns. Or head across the sea towards the shimmering horizon, as the sun descends to kiss the earth in the late afternoon.

Or letting go of gravity and rising upwards into bright, puffy clouds, so far up that the landscape below blurs into purples and blues as you float high above.

This is not about being present and grounded. There will be other opportunities to sit with difficult emotions and create space for them. This is about being able to give yourself what you need during the more difficult times and escape for a short while, breathing into the spaciousness of being somewhere else.

Take a deep breath and enjoy your flight.

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While it is true that avoiding difficult emotions is not a recommended practice, consider this your glass of wine. Just for today, just to catch your breath.

Please, Wear the Mask

This post is not about politics. It’s about compassion.

Wear the mask.

I have an 18-year-old daughter who works at a local bakery-cafe. While most of her hours were cut, she’s started to get calls to come in again. She’s there to take your order for chicken soup and salad and fresh-baked baguette. She also wears a mask and gloves, for your safety. As her mom, I’d appreciate it if you wore a mask for hers.

She’s not to blame for what’s going on. She didn’t create the virus nor does she have any control over how long the country will be closed down. She’s also not getting hazard pay, nor does she get an allowance. She earns all the money she has. Her job was to pay for fencing lessons, which she has had to stop, but now she’s saving up for college expenses.

My daughter is there to serve you. If you come in without a mask because you feel it’s your right not to wear one, she’s not going to toss you out the door. She’ll give you your food. You risk giving her a virus.

And by extension, giving the virus to the rest of us in her family.

Just wear the mask.

We do this for your family, too.

For a few minutes, when you’re in the cafe, wear the mask. It’s not a political statement. It’s a statement of caring and compassion and understanding that we are all inextricably linked to each other. What is good for one of us is good for all.

And I mean, for all of us down here on the ground level. We’re not the movers and shakers, we’re simply the doers and the survivors. We’re not the millionaires who quarantine in luxurious surroundings and get to break the rules with indemnity. We’re your neighbors who share your concerns.

You’re angry? You have the right to be. But you have no right to take it out on my child.

So please, wear the mask. Compassion looks good on you.

Rethinking “Essential”

Years ago, I went through earthquake disaster training at work. I was designated a point person for our floor of the building, and therefore given a sticker for my ID that read, “Essential Personnel”. A friend of mine, upon seeing this, quipped, “Does that mean they dig you out first?”

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Three months ago I would have never imagined getting a rush from finding a bag of flour tucked way back on a store shelf.

We now have a new measuring stick by which to judge what is “essential” to our lives. Clearly it’s not the trendy shoes or sporting events that we think we can’t live without. It’s the doctors and nurses that we take for granted, mail carriers and Amazon delivery people that we gripe about when our package is late, grocery store clerks and restaurant cashiers to whom we don’t give the time of day They are the blessings in our lives.

When we return to normalcy, take some of this back with you.

These days, leftovers are perfectly acceptable. The food long ago shoved into the back of the freezer transforms into a delicious dinner. And the unexpected shipment of hand sanitizer at the local warehouse store brings immeasurable joy.

How refreshing to truly appreciate these seemingly little things that we have, right now, in this moment.

Eventually, we’ll emerge on the other side of this. And I hope, in the midst of all the finger pointing and contentious debates, we pause and think about what has transpired. Consider how quickly our realities changed. Consider those who have lost jobs, lost loved ones, lost hope. Consider the people who have dedicated themselves and risked their lives to keep things moving, keep others healthy, keep you fed.

As we resume our busy lives and the din of the city increases again, I hope and pray that we don’t lose this appreciation. Respect and gratitude are not partisan concepts, so we should stop acting as if they are.

I can assure you, I will never take cleaning wipes for granted again.