“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.”
A few days ago, I was hurrying across the room to open the door for a workman who was coming to fix holes in our walls resulting from a plumbing emergency.
In our haste to make space for the workman, we emptied the contents of a closet (where one of the holes was) into the middle of the room that I was crossing, and as I scurried, one of those wayward closet inhabitants tripped me. I crashed onto the floor, twisting the joint of my left big toe and falling onto my right arm.
I tried icing, but I could easily ice only one body part at a time as I tried to work at my computer, and since I needed to be able to walk, the foot got preferential treatment. As a result, while the bruise on my foot looked terrible, I could put pressure on it and as long as I limped, was able to get around.
My arm was another matter. For the remainder of the day, I was wondering whether I had fractured anything. Rotating my wrist was excruciating, bending my elbow any amount was painful and even just having the arm hang down hurt like crazy. I couldn’t grasp things with my right fingers. The only non-painful position was if I supported my right hand with my left.
Why am I telling you this?
Because I’d written some time back about how I found it difficult to find gratitude for “little things” because doing so felt forced.
Well, that morning, I ate those words.
Because when I think back now of how wonderful it was to be able to open a jar of pickles by myself, or even raise a fork to my mouth, I get hit between the eyes with the concept of finding gratitude for everything.
I found gratitude for the fact that I fell on the carpeted floor and not onto one of my son’s tools (that he had left lying around — I need to talk with that boy), that I am still allowed to work remotely and can do so from the comfort of my bedroom, that we have a car with automatic transmission (no shifting!), and that we had enough bags of frozen veggies that I could easily rotate through as they thawed and keep icing.
The next morning, I experienced a tsunami of gratitude for feeling better, getting more mobility and being able to avoid a visit to urgent care. That one trip knocked some sense into me and reminded me that it is not nearly as difficult to fill my cup with joy for things I’ve been regularly taking for granted.
So, that trip I took helped me discover that I don’t need to wait for gloriously grand things to occur in order to feel gratitude. Multiple reasons for a grateful attitude are all around me, every day.
I mentioned a few posts back that in addition to stopping letrozole (an aromatase inhibitor) which had originally been prescribed to me as long-term endocrine therapy for breast cancer, I saw a cardiologist. I was experiencing what felt like irregular heartbeats. Since arrhythmias have been associated with aromatase inhibitor use, I wanted to make sure that I wasn’t going from one problem to another.
The cardiologist I met with ran an EKG, listened to my heart and told me he really didn’t think I had any issues. However, he ordered an echocardiogram and a Holter monitor just to be on the safe side. I did both tests.
A week ago, I met with him to go over my results. He was pleasant as always, asked me how I was feeling–I was feeling great, actually, since I was pretty positive that I’d imagined any heart issues because I’d experienced little since I turned in the Holter monitor for analysis. So, if anything, I was a tad embarrassed for blowing things out of proportion. Geez, I’m such a hypochondriac!
That’s good, he said, equally pleasantly. “Because we found something.” Equally pleasantly.
I had not expected that. What I was expecting was, “everything looks normal.”
However, looks like there were some arrhythmias: supraventricular tachycardia and supraventricular ectopics.
My doc wasn’t concerned. He said that based on other data (72% left ventricular ejection fraction [LVEF]) my heart was healthy and strong.
Ooookay. But I was a little shaky that my concern about extra beats had been confirmed. Because I hate fearing that something’s wrong and finding out that I was right in fearing it! I’d prefer that it be all in my head.
Then we delved further into the echocardiogram. I shifted uncomfortably in my seat.
On the plus side, lots of things were normal. That’s good.
However, way back in early 2018, while I was receiving infusions of Herceptin, my then-cardiogram showed pericardial effusion (fluid where it shouldn’t be), but in a subsequent echo it had “fixed” itself. Well, that was back now. Also trace mitral and tricuspid regurgitation: my valves are a touch leaky. My cardiologist wasn’t too concerned about it. “Wear and tear,” he said.
But he also noted that I had a marginally “dilated proximal ascending aorta.” Right after which he noted that I was tall, suggesting that there could be error in the extremes. But neither one of us was 100% sure whether that was a change from the previous echo, based on how the report was written. And he questioned some of the values, saying that echocardiograms weren’t perfect or always accurate.
At the same time, he wanted me to come back in a year for another echo. Just so that we can be sure that the dilation hadn’t progressed. “Then we worry,” he said.
I left the office with questions swirling inside my noggin and decided to do some computer research, which I immediately regretted.
First of all, “dilated proximal ascending aorta”, when googled, brings up a gazillion results about aneurysms.
I know I don’t have an aortic aneurysm. But I have to wait a year to see if the dilation progresses. That’s 365 nights of staring at the ceiling. And I have to make sure to remain calm and not harrass myself into elevated blood pressure, because that can put more stress on the blood vessel and dilate it even more.
Oh, and the supraventricular tachycardia and ectopics? Those are improved by exercise (um, yep, been doing that) AND by staying calm.
Try yoga and meditation, the websites suggest.
Okay, yep, been doing that too.
So where am I with all of this now? Obviously, I need to keep doing what I’ve been doing. But this really does underscore a couple of things:
1) Meditation and mindfulness are critical to our well-being. These are habits to establish now (yesterday!) and not stop. Ever. 2) Cancer casts a long shadow. You might be fortunate enough to earn the title of “cancer survivor”, but that doesn’t mean that it’s all giggles and rainbows afterwards. Cancer treatments are tough and while we’re furiously obsessed with doing whatever we can to minimize the chances of cancer returning (because that’s Job One), someone at some point needs to start thinking about what happens once the cancer is gone and we have to clean up after the long-term effects of the treatments.
Could my heart “issues” (I don’t know if they are serious issues yet) have been caused by Herceptin infusions, radiation to the chest and aromatase inhibitors? Yes, they could have. But could the fact that I am highly reactive and have a strong response to stressors played a role in this? Yes, of course.
And does it really matter? No, in all honesty it makes no difference. Whatever happened has passed. My only path through this is a calm heart and solid grounding on the Earth. I’ll know more about my physiological state in a year, which gives me another twelve months of daily meditation and exercise, and an even better appreciation of how my mind generates agony.
When is a “chemo port” not a chemo port? When it’s a heart rate monitor. Except that my emotional brain can’t tell the difference.
For anyone unfamiliar with cancer chemotherapy, a chemo port, or subcutaneous implantable catheter, is a device implanted under the skin (usually on the chest) that is accessed during an infusion to enable easy mixing of the chemo drugs with blood within a major blood vessel. This avoids a good deal of injury to any smaller blood vessels, were you to get chemo drugs via an IV to your arm. (For more info, see this post.)
As much of a blessing as the chemo port is, having a foreign object pushing up from the chest wall under your skin can give “Alien” (as in the movie) vibes. For me personally, the implanted chemo port was more psychologically taxing than I anticipated, and as soon as all my infusions were done, which took a year, I had it taken out ASAP.
So almost three years after its removal, the chemo port is spooking me again, this time in the form of an extended Holter monitor for continuous heart rate recording, which I’ll have on for almost two weeks. It’s taped to the skin in a fancy patch that you can exercise and shower in, and supposedly you forget that you’re wearing it and go on your daily routine as normal.
But for me, it’s bringing up the spectre of chemo port, and memories of discomfort and pain I felt having that bulge stretching my skin of my chest. I chant my mantra of “it’s ON, not IN” in an effort to distinguish between the port and monitor, but the longer than it stays on, the more anxiety I feel about it.
All those emotions about the lack of control over my own body, feeling so abnormal and outwardly looking “sick” (not to mention fear of death) are rushing back. The Holter monitor peeks up from the neckline of my shirt, hooks my car’s seatbelt and often seems to be in the way. I find myself moving away from other people in fear of having them knock it or hug me too tightly and cause pain, even though the monitor doesn’t deserve the same apprehension that the port did.
I’m removing the Holter patch today and sending it back for analysis, so that’ll be a big relief. But the power of this reaction is another reminder of the depth of fear that the cancer experience placed within me.
So why am I wearing the heart rate monitor anyway? I was having little cardiac “episodes”, particularly over the last year, and this was one of the (many) reasons for discontinuing aromatase inhibitors. Mainly these were sensations of skipped or extra beats or an odd “fluttering”. I’ve already had an EKG and echocardiogram, neither of which apparently showed anything abnormal (I haven’t received a final report of my echocardiogram but had been told that the cardiologist would contact me if he found anything problematic, and it’s been a week and a half, so I’m guessing everything’s okay?).
The Holter monitor was the last step in looking for arrhythmias or similar issues. And wouldn’t you know it? The further I’ve gotten from stopping aromatase inhibitors, the fewer episodes I’ve experienced and haven’t felt anything distinct since I got the monitor. What I’m feeling is very occasional, subtle “sensations”…but these may turn out to be nothing. I’m okay with that. As a matter of fact, I’m not even worried about what the data might show.
That shouldn’t be surprising, given that it was my “scan-week” of the year, but even I was taken aback by how I’d felt.
For at least two weeks prior, I’d had that low grade, persistent anxiety simmering, the kind that you can *mostly* ignore during the day, but wow, does it rear its ugly head at night. I’d fall asleep, only to wake several hours later and then the mental battle of focusing on my breath vs. intrusive thoughts would begin. You’d think that by now I’d be better at shifting my focus, but meditation is always a work in progress.
Tuesday was my 3-D mammogram. That’s the one that verifies that I’m still in remission from breast cancer. Oooo, just a tad bit anxiety-provoking, but since I had seen my oncologist not even two weeks before and he’d already checked me out, I wasn’t overly frightened. I admit, it didn’t help that I couldn’t bring my husband for support (hello, COVID), but I felt positive going in.
And everything looked good. For that day it calmed my scanxiety.
But by Tuesday evening, I was frightened again.
This had ceased to be about breast cancer. Now it was all about my heart. I mentioned in a previous post that I’d been having little “heart episodes”. My blood pressure monitor kept signaling “irregular heartbeat detected” and my heart rate monitor would show funny spikes when I was working out. The app I was using for measuring heart rate variability (HRV) would show heartrates up to crazy numbers like 262bpm, and from time to time I’d get heart palpitations.
To complicate matters, the Herceptin I had been given for my triple-positive breast cancer is known for its cardiotoxicity and there are heart-related side effects associated with the endocrine therapy that I’d been taking for the past three years.
But on top of that, my heart would pound when I got anxious. No matter what I did, I couldn’t ignore it–I could hear it. And that pounding made me even more anxious.
That sounds like a never-ending loop right there.
Somehow I made it to Thursday and my cardiology appointment. The mere thought of having a scan that focused on my heart was anxiety-provoking but the medical assistant engaged me in conversation and kept my mind occupied. Even my blood pressure came out as in the 120s/80s (can’t remember the exact number), which was quite normal. She ran the EKG and went to get the doc.
So right now this story is running long, but the bottom line is that my EKG was perfectly normal. The cardiologist, an older man with a gentle voice and pleasant and calm demeanor, asked a lot of questions…and ultimately told me that he didn’t think my heart had issues.
But he suggested that we run a couple more tests: echocardiogram and 14-day monitoring. That way we could rule out anything serious.
And I, the one who hates scans and the anxiety they bring, felt so much relief that he was willing to humor me, so that I would definitely know if those “episodes” I’d experienced were real or not.
I have everything scheduled now. And wouldn’t you know it: I didn’t experience any weirdness all weekend. No perceived skips, no palpitations. I am rarely aware of my heart beating and no longer hear it in my ears.
So I had several days’ reprieve.
Sunday night I felt it again. Let’s see where this goes.
I had mentioned to my cardiologist all those technological gadgets that I had, my blood pressure monitor with irregular heartbeat detection, my heart rate strap that can measure R-R intervals, my watch that has optical heart rate monitoring capabilities. And he said, the new tech has its benefits but it can be inaccurate.
It was just few days short of four years from my diagnostic mammogram, the one after which I was told I had triple-positive breast cancer.
If you or someone you love has been through this experience, you know the drill: surgery, chemotherapy, radiation, maybe monoclonal antibodies, endocrine therapy. Yours may come in a different flavor, but the dish is the same, give or take.
Last Thursday, following three years of endocrine therapy (two of tamoxifen and one of letrozole [aromatase inhibitor]), I called it quits, with my oncologist’s permission. The side effects of the letrozole became too much for my joints, my brain, my intimate relationship, and possibly even my heart. My doc said he knew it when he saw me and agreed that enough was enough.
Keep in mind the song that all of us cancer folk sing: “everyone’s experience is different.” Based on my personal situation, and after a medical consult, this was the right decision for me.
I wanted to know what to watch out for, so my doc said:
1. Unexplained weight loss 2. Persistent cough 3. Neurological issues (i.e., seeing things that aren’t there, blurred vision, etc.)
Obviously, there are other signs of cancer recurrence, but those are what my oncologist wanted me to be particularly wary of. And then he noted that he couldn’t remember the last time one of his HER2+ patients had a relapse, so effective is the Herceptin that we’re given. But it has heart risks.
Since I’ve been off letrozole only a few days, I’m still experiencing most of the side effects–it will take several weeks to shake them.
I almost don’t know what to do with myself, and I’d be beside myself with joy if it weren’t for a possible heart arrhythmia (!) that I am experiencing. I’ve already scheduled an appointment with a cardiologist.
Yeah, I’m miffed that there’s always something with cancer. A week prior to my onc appointment I’d been in my car at a traffic light when I felt heart palpitations, sort of–and then I started seeing dark spots, like you do before you faint. The episode passed, but I had been having those brief palpitations for months, minus the spots. Maybe once a day? Maybe less.
And over a year ago, I went in for a regular health check-up, during which time the nurse practitioner checked my vitals and noted that there was some irregularity in my heartrate.
Just like with my cancerous lump, I waited, thinking would go away. But chemo and especially Herceptin are cardiotoxic, and aromatase inhibitors have been associated with heart arrhythmias. So just as soon as I got off the cancer carousel, I’m getting on the cardiac one–until I’m able to rule out problems.
I have both a 3-D mammogram and an EKG next week, and I’m way more worried about the EKG. Who would have expected that from a breast cancer survivor?
In my last post, I whined about the repercussions of taking aromatase inhibitors (in my case, letrozole) as a way to diminish the amount of estrogen in my body, for the purpose of reducing the risk of breast cancer recurrence.
While I also mentioned letrozole’s effects on my exercise habits, in this post I wanted to drill down on one aspect in particular: muscle loss.
Before I go further, I need to add a disclaimer. Since the time the first photo was taken (the morning before my first chemo infusion), three and a half years passed and I went through menopause. Notably, the menopause was pharmaceutically-driven, starting with tamoxifen and then, after my hormone levels were low enough, continuing with letrozole. However, my body now is dealing with the same aging effects as someone who had transitioned naturally.
Except that my transition came before its time.
The below photo is from April 27, 2017, before I headed to the infusion center for my first dose of chemo. I had been training as normally as I could, under the conditions of lumpectomy and port placement that I wrote about here, and finding work-arounds for exercises that I’d been told not to do.
While I lost some size and strength throughout my chemo infusions (here are all the photos), I was able to bounce back and had a particularly strong 2018 (sorry, don’t have good photos of that). But as the endocrine therapy with tamoxifen continued in 2019, to be replaced by letrozole in 2020, I could feel the effects of low estrogen.
On December 11, 2020, I struck the same pose again for sake of comparison.
As far as muscle appearance is concerned, I have experienced a slow downhill slide. My shoulder is not as peak-y, the biceps itself has decreased in size and I even find it more difficult to hold this muscular contraction. In addition, there’s more looseness in my skin, particularly at the back of my arm, which in part may be due to loss of collagen, also affected by estrogen levels (nice dermatological review by Shah & Maibach, 2001, Am J Clin Dermatol).
I’m busting my butt trying to increase the amount that I’m lifting, but I’m not making progress. Not surprisingly, the decrease in estrogen plays a role in this. As stated by Chidi-Ogbolu & Baar (2019, Front Physiol), “estrogen improves muscle mass and strength, and increases the collagen content of connective tissues”.
It makes sense then that lack of estrogen is going to be detrimental to maintaining muscle. To that point, Kitajima & Ono (2016, J Endocrinol), working with animal models, have found that “estrogen insufficiency leads to muscle atrophy and decreased muscle strength of female mice.”
Not just mice, obviously.
This information comes as no surprise to any woman who’s gone through menopause, I’m sure. But the experience of being slammed through menopause instead of having the opportunity to transition more gradually is yet another frustrating way that having cancer pulls the rug out from under you and reminds you that you are not in control of your life.
Slowly, yoga is becoming more important in my life and my view of fitness is changing. Good thing too, since I can’t keep beating myself up like this.
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.
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.
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.
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.
So it’s Saturday and I’m sitting in my general practitioner’s waiting room, having been able to secure an emergency appointment. That morning I started seeing light flashes (photopsia) in the outer periphery of my left eye. Very weird, sudden and striking, like little comets whizzing up and down along the curvature. I know I shouldn’t immediately rush to the uncurated internet for information, but who can resist when you need answers fast? After a quick search I saw some of the possible causes, including retinal detachment and Vitreomacular Traction Syndrome (VMT). My symptoms were pretty spot on as I realized I had some significant floaters in my eye too, more than usual.
Great. I am taking the aromatase inhibitor, letrozole. And so far, it’s been highly effective in dropping my estrogen/estradiol to basement levels. Like, 80-year-old granny levels. Except that I’m 54 years old.
So now I’m waiting to see whether what I experienced really does have to do with my unnaturally-low-for-my-age estrogen, or if it’s nothing to worry about. My GP’s office couldn’t do a retinal scan, but as soon as I get approval from my insurance, I’m jumping on the first ophthalmologist appointment I can get.
Before cancer, I would have brushed the symptoms off as just some passing oddity. I doubt I would have taken action unless the symptoms had persisted, and even then, it might have taken weeks. I wasn’t primed to react.
But now, while I am *not* panicking, I’m also not waiting. Like it or not, cancer taught me that when it comes to worst-case scenarios, the worst is a distinct possibility.
If this does end up being VMT syndrome or similar, and if it can be reliably linked to medically-induced estrogen suppression, I’ll be deciding between risking loss of eyesight vs. risking the return of cancer.
One of the most popular posts on this site has been, “I Didn’t Expect THAT: Breast Changes“, so I thought it might be useful to revisit the subject now after a few years have passed since my initial lumpectomy for breast cancer.
Before my surgery, I had been frustrated by the lack of information about how much tissue would be removed along with my tumor. Or maybe I was just too afraid to search. In either case, I had prepared myself to lose a good chunk of my left breast. All the “after” photos of lumpectomies that I found on the internet were not pretty.
However, my tumor was only 1.6cm at its longest, and was on the outer upper quadrant of breast, and this turned out to offer me the best of all possibilities. There was amazingly little breast size lost. I was impressed. So was my surgeon.
So, fast forward to now, three and a half years down the road. The scars, one for the lumpectomy and the other for lymph node excision, remain very uninteresting in a good way. Only three sentinel lymph nodes were removed, and the scar for that sits up in my armpit. The lumpectomy scar is situated a bit further down and into the side of my breast. But it’s not obvious.
The biggest issue I have had with the lumpectomy scar is that the scar tissue there feels like a biggish lump itself. Not frightening for me anymore, but when I went to a new gynecologist who, I suspect, forgot that I had had breast cancer (HOW? That’s the main thing I talked about!), she felt that area and said, “Oh, there’s something here” in that ‘I’m-going-to-say-something-scary-in-a-calm-voice’ kind of way.
Yes, it was just my scar tissue, but for a split-second I wanted to let myself freak out. Didn’t, but wanted to.
But the bottom line is, as time has gone by, the scars remain inconspicuous, and if not for the fact that my affected breast is actually a touch firmer and larger than the healthy one, something attributable to radiation treatment, there’s no obvious sign that I had breast cancer.
Not a bad deal considering what could have happened.
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.
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.
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.
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.