(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.

Thoughts On Random Twinges

It won’t come as a shock that I’m so grateful to have cancer treatments behind me. While it’s true that the ‘me’ in the mirror still looks so different from the person I used to be, memories of cancer slowly fade into the background as concerns about current life take precedence. The more time that passes, the more likely I am to think that treatment wasn’t that bad. Hey, maybe parts of it were pretty good?

Nothing shocks me back to the frigid reality of cancer like an unexpected flash of pain in my breast. I don’t mean those post-surgery “zingers” that I was warned about. Those I’ve gotten used to and consider familiar. The ones I’m talking about feel different. I stop breathing for a second, trying to define the sensation.

I feel stupid forgetting how nasty a beast cancer is. These pains throw me into high alert. It’s an unpleasant sensation, because it transports me back to an uncontrollably dark point in my life. I’m so mindful and present in the “now” that it’s almost too intense.

Then the pain stops. Um, okaaaaay?

These are sensations that someone who’s never gone through cancer would consider to be weird annoyances. But to a former patient, they mean something else. I’m primed to worry about anything new, no matter where it is.

Twice so far, I’ve experienced a sudden weakness in my arms. Both times it was in the morning not long after rising. My arms felt heavy and uncomfortable. This is not normal. It’s worst for about a minute and then gradually disappears, but my focus on it is so sharp that I’m not sure if it’s really gone even after a half hour, most of which I’ve spent googling “sudden temporary weakness in both arms” and getting unsatisfying results.

“Relax, it’s only Ebola.”

Incidentally, not a single one of those search results mentions cancer.

That echoes what my oncologist said: “You know, it doesn’t have to be cancer.” Yeah, I know, but in my mind the Big “C” still seems like the scariest bully on the block. I shudder at the thought of another round of treatment.

Clearly, things have gotten weird when you read that your symptoms might be due to ischemic stroke — and breathe a sigh of relief.

Addendum to Anxiety

I am just coming off a bout of particularly intense anxiety, so this is a good time to write an addendum to my last post. This episode of anxiety was striking in its intensity, hit me much harder than I expected and took a lot more out of me. The trigger was something that happened to someone I love, so I had no control over it but felt all the emotional pain.

It’s now been almost a week. Intellectually I’m over it but its physical effects linger and threaten to pull me back in. This is a change from the past because I used to be able to shake these feelings more easily. Now anxiety casts a long shadow that remains after the worst has passed. I get flashes of the stressful event and I re-experience that despair.

As it did with my cancer diagnosis, my weight plummeted over the past week. The reason: my reaction to anxiety is in the gut and intestines. A cold, tight, miserable feeling — emotional pain made physical. As days go by and things seem to fall back into place, meditation grounds me and staying mindful keeps me focused on the “now” and not ruminating on what has happened. But while I can calm myself, the physical effects of the nausea hold on. 

That nausea, then, serves as a reminder of the event and re-triggers the anxiety. In times of distress I fear eating because the nausea is even worse with food in my stomach. But not eating weakens me and increases the sense of agony. This transitions into a depression of sorts. Quite simply, at this point I can’t win.

What causes even more anxiety is the link between stress and inflammation, and thereby inflammation and cancer. While I’ve been assured that it’s not the case, there’s a part of me that still implicates stress in the proliferation of my cancer. 

As my weight drops I am reminded of that same fear I felt after my diagnosis, that the drop in weight would worsen my outcome because I still had to go through chemo and its effects. So all that fear is concentrated and deep in meaning. One event triggers multiple memories.

This seems like an impossible situation. Anxiety brings worries of cancer, which cause more anxiety. I’m afraid of being afraid. Doesn’t that sound ridiculous?

The cycle runs its course as time passes. The intensity fades. Slowly I regain my emotional footing, but I’m still attached to the expectations I had before the event that triggered this anxiety. Those expectations will eventually transition into a new reality, but until I am truly able to practice non-attachment, I am destined to repeat this.

Invisible Effects: Anxiety

This is tough to write.

One of the reasons this blog is currently anonymous is that there are topics I want to cover without the fear of being judged. As many strides as have been made in dealing with mental health issues, there still remains a stigma associated with things going on in your headspace.

If there’s one thing that cancer did, for better or for worse, is force me to face the fact that I have a problem with anxiety. I’ve often wondered how different my cancer experience would have been, had I been able to go through all of this without the uncontrollable fear. I expect that I would have been less angry, less nauseated, less desperate. I’m sure that other people experience anxiety with their diagnosis too; mine devoured me.

Cool, calm, collected…and so not me.

This deserves a description: if asked to describe myself as a dog breed, I would like to say that I’m a Great Dane or a Mastiff (hopefully less drooly), watching the world coolly, not getting too excited about anything. But that’s not who I am. I’m a Chihuahua — but not a nasty, bitey, snarly guy with a Napoleon complex. I’m one of those pathetic little dogs that just sits there and trembles with a paw raised. I get anxious, and how. But in the past, the bouts of anxiety always passed rather quickly, perhaps in a matter of hours or, at worst, a day or two. My mind would work through it, and that would ease the tension. That’s why I’ve always been able to handle it.

But going through cancer blew that to pieces. When I experience anxiety now, it hits me like a freight train. The effects are immediate: a cold punch to my gut followed by nausea and weakness. When I focus on being mindful and present, I can slow my breathing and heartrate but I cannot get rid of the nausea, so I can’t shed the overall feeling.

This sensation is horrible. Meditation works wonders, but I cannot yet make enough space for my anxiety to be able to step back and observe it. It’s in my face, and that’s terrifying, but not necessarily apparent to those around me. It’s a dirty little secret that has affected my quality of life.

That can be harder to deal with than cancer. And I can’t believe that I let myself write that. But apparently, I’m not the only one who feels that way. Dr. Stephen Ilardi, Associate Professor of Psychology at the University of Kansas with a private practice in Clinical Psychology, teaches a Calm Master Class called “Rethinking Depression” (Calm.com) in which he describes the experience of a former cancer patient who battled Hodgkin’s lymphoma. While undergoing particularly difficult cancer treatment, the patient was visibly ill and suffering but received an enormous amount of support from those around him, and that helped him through the disease.

Several years after he recovered from his cancer, the young man experienced a bout of serious clinical depression, but he didn’t “look sick” the way he had from the lymphoma. As a result few people around him understood the level of psychological pain he endured, and he received little support.

After his depression finally lifted, the patient declared that if he had to chose between once again going through the cancer or experiencing depression, he would take the cancer even though its treatment was pure physical torment. 

That speaks volumes regarding not only the agony of psychological distress but also how critically important it is to take it seriously. Mental health issues deserve more attention, and even though we’ve come a long way in understanding their impact, we need to do better. In the context of cancer, I feel it’s imperative to address the psychological repercussions of the disease, in addition to the life-threatening physical ones.

Which is why I’m writing. I can’t help but think how much worse this would be if I wasn’t actively engaged in coping techniques.