A Year on Letrozole

Warning: This is going to be a bit of a gripe-fest…

This coming week marks my one-year anniversary of taking letrozole, an aromatase inhibitor designed to reduce the risk of recurrence of my breast cancer by reducing the levels of estradiol (precurser to estrogen) in the body.

Aromatase inhibitors are problematic. Significant numbers of women discontinue taking these medications prior to the planned end of treatment, and this is due mainly to side effects (Kadakia et al., 2016, The Oncologist).

A year into this, I can completely relate. When I was on tamoxifen, the side effects were less well-defined. With letrozole, they’re unmistakable.

Most infuriating are the physical ones, especially the arthralgia (joint pain). I’m an ardent exerciser, regularly engaging in rowing, lifting weights and interval training. Arthralgia puts obvious limitations on my workouts. Maintaining muscle is harder and as a result I need to work out more intensely. So I push it, but it feels like I’m treading water with an anvil tied around my neck. I know that working out and building muscle is going to be tough at age 54, but I question the benefits of a drug purported to lessen the chance of cancer recurrence when it’s affecting my ability to engage in something (exercise) which is strongly associated with a decreased risk of cancer (Cannioto et al., 2020, JCNI). It doesn’t seem to make sense.

No matter how tired I am in the evening, some nights are restless and NOT refreshing.

Another effect of the drop in estrogen is fatigue, which can be intense by the end of the day. Then, okay, I go to bed early, but my sleep quality is hit-or-miss. Sometimes I experience weird “restless leg” symptoms. This is a “gripping” or aching sensation that can only be aleviated by moving my legs. Any position that feels comfortable at the moment soon won’t, and I do an awkward dance as I move around in bed. Not a great recipe for falling asleep. Luckily this doesn’t occur every night, but when it does, it impacts the next workday.

As a side note, I usually take magnesium supplements before bed, not only to aid in muscle recovery, but also to help with sleep. I don’t know what my nights would be like if I didn’t take them regularly, and I’m not willing to find out.

Over time, the pain in my joints and limbs has increased. It’s most pronounced in my fingers, toes, ankles, hips and elbows, and I’m generally most achey as I’m going to sleep and when I wake in the morning. Sometimes it’s bad enough that it wakes me at night–usually a burning sensation in my fingers and toes–but that happens only occasionally.

By the way, in case you’re wondering if that’s bone metastases instead of side effects, trust me, I’ve already thought about that. I’ve also done the obligatory googling, and while I’ll let my oncologist know about the pain at my next appointment, I don’t think it’s metastasis. These symptoms are just your garden-variety letrozole side effects.

One of the most striking physical side effects (that I could actually show to other people!) didn’t kick in until about Month 8 of taking the letrozole, when the stiffness in my fingers escalated to the point where several of them would lock up in the morning. If I made a fist and then attempted to open my hand, a few of my fingers would “stick” and, as I continued to try to straighten them, they’d suddenly sproing open.

I’ve already mentioned the physical fatigue, but there’s a deeper, darker side to this, which I’ve written about previously. The rest of my family — husband and two teenagers — are up and lively in the evening as I’m dragging my sorry butt to bed. I feel a strong disconnect from them. More specifically, I feel old, which is not surprising, since decreased estrogen is associated with ageing. I feel like I don’t belong with my family anymore, like there’s a distance between us. So, I’m taking a medication to help prevent a possible recurrence of my breast cancer, but the price I’m paying for that reduced risk seems pretty steep.

The disconnect from my family makes me feel alone…and old.

Adding to that feeling of disconnect is the sudden drop in my libido. Perhaps this would have been easier to take if I were single, or divorced (which is the direction it sometimes feels this is heading). I’ve already written about the issue here so I won’t rehash all my frustration. Suffice it to say that while sexual side effects are mentioned in the scientific literature and in doctors’ offices, they’re not really talked about from the standpoint of the effect they have on relationships. This is one of those intangible issues that is difficult to quantify and even more difficult to discuss.

There are also cognitive problems that involve (1) concentration, (2) focus and (3) memory. Listen, I need all three of those for work. I cannot express how crippling it feels trying to learn new convoluted financial software when my brain simply refuses to cooperate. Truly, taking a mindfulness break helps immensely, but it simply doesn’t solve the problem. It just keeps me from putting my fist through my monitor.

Ah, yes, irritability. Put that down as another side effect.

This would be me. If I were a baboon. And used the Oracle Financial System.

So I’m a year into letrozole and I’m searching through the scientific literature to see what, truly, are the rates of recurrence for women who discontinue the medication prematurely, and what other factors come into play in terms of reducing risks.

My goal is to get through at least five years of combined endocrine therapy (tamoxifen and letrozole), and I’m already more than halfway there, having finished two years of tamoxifen before I got on the aromatase inhibitor train. I mean, only two more years of this.

Maybe I’ve hit the high mark of side effects and they won’t get any worse? Maybe?

~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Note: the side effects I’ve mentioned are not the only ones that occur with aromatase inhibitors. These are simply the big ones for me. Before you start any treatment, make sure you discuss with your oncologist what sort of adverse reactions you can expect and what you can do to mitigate them.

The Magic of the Exhale

If there is one thing that I can point to that has had the most profound effect on my reaction to anxiety-provoking stimuli, and also brought more calm into my entire day, it is deep, diaphragmatic breathing.

Diaphragmatic breathing (sometimes referred to as “belly breathing”) is an effective way to bring air into the lungs than simply inhaling into the chest. As the belly pushes outward, it pulls the diaphragm down, allowing the lungs to fully inflate.

This deep breath, in conjunction with my favorite breathing pattern — Dr. Andrew Weil’s 4-count inhale, 7-count hold, 8-count exhale — is what I call my magic pill. I have found this type of breathing to be very soothing. Dr. Weil based the 4-7-8 pattern on pranayama, an ancient yogic breathing technique, but the benefits are well-supported by modern science (Gerritsen & Band, 2018, Front Hum Neurosci, for example).

Neuroscientifically Challenged presents a short video introduction to the vagus nerve: “2-Minute Neuroscience: Vagus Nerve (Cranial Nerve X)“. It’s everything you never knew you really needed to know about the vagus nerve.

For me, it is the extended exhalation that is key. When the length of the exhale equals or particularly exceeds that of the inhale, a signal is sent to the vagus nerve. The vagus nerve is the 10th cranial nerve, and the longest one, running from the brain down to the abdomen, innervating a number of major organs along the way. The vagus nerve is also a major part of the parasympathetic nervous system (think: “rest and digest”) (Breit et al., 2017, Front Psychiatry).

The extended exhale has been shown to increase heart rate variability (HRV), slow down the heart rate itself and relax the body. HRV “represents the healthy fluctuation in beat-to-beat intervals of a human or animal’s heart rate. … Higher HRV is associated with stronger vagus nerve function, lower chronic stress levels, better overall health, and improved cognition” (Bergland, 2019, Psychology Today).

When I notice that I’m rushing through my day or experience wakefulness in the middle of the night, I have learned to turn my attention to my breath. Regardless of whether or not I’m feeling anxious, I often find myself breathing more rapidly and shallowly (chest breathing). As soon as I become aware of this, I take a deep, diaphragmatic breath and deliberately extend the exhale.

That first deep breath makes me realize how much I needed to slow things down.

That first deep breath is like putting the breaks on a runaway locomotive. It make take several more breaths to fall into that full pattern. I don’t force it — I simply allow each breath to be slower and deeper than the previous one. The sense of grounding feels amazing. I keep a lot of tension in my neck and shoulders, so I take care to release those muscles with each exhale. The result is that I feel a gentle sinking and relaxing.

One of the ways that I’ve benefitted most significantly by taking a “breath break” like this is that it has linked my formal, “on-the-cushion” meditation to the rest of my life. Even after I had established a daily meditation practice, I struggled to bring that same sense of calm into the rest of my day. Breathwork was the missing piece of the puzzle.

This deep breathing slows the overwhelming rush of sensations and provides an immediate connection to “now”, inviting stillness and spaciousness. Noticing my breathing in the midst of chaos exercises mindfulness. All this results in a sense of contentment and well-being.

Who wouldn’t want that?

When You’re The “Default”, You Don’t See The Problem

While it might not seem like a cancer/meditation/mindfulness blog is the place to bring up the issue of racial disparities, I feel this is exactly the right place for it. Because we should all be talking about this in every situation.

I am white. I grew up with people on television who looked just like me. I had dolls that looked just like me. Companies marketed their products to people who looked like me, using advertisements with actors who looked like me. Even the crayon color called “flesh” looked like my skin, and I didn’t question it. I had school friends who were black, but I didn’t understand their experience. So I really understood nothing. As a child, I didn’t see the problem.

But the problem is massive and we haven’t made much progress since the days of the 20th Century civil rights movement. The main thing that’s changed is that we now have video phones so we’re bearing witness to events that have been going on all along, but unseen by the white community.

You cannot turn 400 years of oppression around with non-discrimination laws, congratulate yourself and proclaim everyone “equal” (read: shouldn’t be complaining), because the inequality has been in our system for so long that it’s what the country runs on. It lubricates the gears of society. And there are people in power who like it that way.

This needs to change and it needs to change now.

If you don’t think that being white infers an automatic privilege, try being a black teen in a hoodie, walking through an affluent white neighborhood.

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?”

~~~~~~~~~~~~~~~~~~~~~

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.