“If you want a happy ending, that depends, of course, on where you stop your story.”
Orson Welles director, actor and producer
Honestly, this blog is supposed to be funny, but sometimes it’s hard to get there.
I am a cancer survivor. You cannot imagine how good it feels to write that. This blog was established to help me document my journey, process my experiences and, ultimately, inch away from thinking of myself as a cancer patient and towards being a mindful, peaceful and accepting (that’s a tough one!) creature on this Earth. Be warned, some of my posts are self-indulgent and unnecessarily wordy; I have much respect for anyone willing to slog through them.
Right now, this blog is anonymous: I need to stumble through my feelings, complain when I feel like it and be blunt when necessary — and I need a safe space to do it without fear of judgmental glances. While my goal is to keep this light-hearted, I realize that I have the pleasure of being a survivor and chuckling about my cancer experience; there are many who are not granted that opportunity. Writing this blog is a privilege.
Cancer sucks. It’s an indiscriminate spectre that has haunted the lives of practically everyone at some point, whether relatives, friends or ourselves. For me, cancer cannot pass into faded memory quickly enough, but at the same time, I am infernally curious about the disease and how it has changed me.
So here are my facts:
In early 2017, I was diagnosed with triple-positive (estrogen+, progesterone+ and HER2+) breast cancer. The lump was 1.6cm in diameter, removed at the end of March, along with three sentinel lymph nodes that were revealed to be unaffected. Chemotherapy (Taxotere & carboplatin) started a month later and lasted the entire summer, 6 hefty courses, one every three weeks; adjuvant therapy (Herceptin, a monoclonal antibody) also started at this time, but went for 17 courses, ending in April 2018. Daily radiation treatment lasted six weeks through autumn of 2017. A 3-D mammogram in February 2018 showed nothing, in a good way. That marked my first year without the tumor.
I wish I’d been able to write in 2017, but my head wasn’t there. I was not processing, I was existing and enduring. After my final Herceptin infusion, my port was removed and I turned around to see what had happened. It took several months of writing before I tossed out my first post in September 2018, privately at first, and then, “Hello, world!”
It’s going to be a bumpy, unpolished ride. Bear with me.
The drive to conquer my fears is why I insist on playing Phasmaphobia even when I dread the thought of it.
Phasmaphobia is marketed as a “horror” video game, the kind that I actively avoid. The concept is simple: you and up-to-three other networked players enter a haunted building, set up equipment and collect evidence of a ghostly presence. There are different tasks to complete but the ultimate goal is to gather enough data to be able to determine what type of ghost is haunting the premises.
Oh, yeah. And also to get out alive.
Because depending on how long everything takes you to do, sooner or later, the ghost is going to hunt you.
Now, there’s a lot more that I could say about this game, specifically about how it’s set up quite intelligently to be unnervingly terrifying. And there’s Articifial Intelligence involved, which means that the ghost can recognize some of the words that you say (hint: don’t cuss!) that will get it angry and on the hunt faster.
But this post is not a review of the game.
This is an observation that this silly game picked me up and threw me to the ground. It was a reflection of real life, because it perfectly reproduced ME, under acute stress.
By that I mean, tight chest, rapid breathing, elevated heartrate, shaking hands, the whole shebang. I get that gamers go through that, but for me, this meant more. These reactions were exactly the kinds of physiological responses to anxiety that have increasingly plagued me through the years.
People who can handle high levels of stress with cool distance have always impressed me. In fact, I’ve come to see that as a superpower. Being able to maintain mental space around you so that the walls don’t come closing in, squeezing breath out of your chest. That ability to think clearly when things are falling apart around you.
I have often thought, what would my experience be like if I could just dampen that physiological response. Well, Phasmaphobia has given me a chance to practice that.
I imagine myself going into that onscreen home, doing what I need to do, seeing the signal that the ghost is on the hunt (flashlight starts flashing and the front door closes and locks), and very calmly moving to a hiding place and waiting out the event. Declaring to the ghost, “You don’t scare me! I had cancer!” This is, after all, just a game. I’ve been through far worse things in my life.
But, no. Really, I’m kind of a mess. I can’t breathe, I can’t maneuver through a doorway, I drop things and do stupid stuff.
But I’m also stubborn. And playing this game with others like my husband who is unimpressed by the potential terror and shrugs off my disbelief that he’s not unnerved at all (note: he’s also played way more video games) makes me all the more determined to use Phasmaphobia as a “safe space” to practice my calming skills. I can remind myself that the fear is not real, that I’m only looking at a screen and that I walk away from the computer at any time. I don’t have to feel this way.
I am currently a work in progress. But I’ll get there. And once I do, my self-confidence will open the way to conquer other terrifying situations.
Following up on last week’s exercise post, I wanted to focus on two recent studies that really drive home the benefits of physical activity for breast cancer survivors. If you’re not exercising now, here’s why you should consider it.
In 2017, Hamer and Warner published a review in the Canadian Medical Association Journal (Open Access link here). They analyzed 67 existing studies in an effort to ascertain what lifestyle factors were most important in reducing the risk of breast cancer recurrence in survivors.
The results were striking: of all the lifestyle variables that the researchers looked at, exercise came out on top. They found that engaging in moderate exercise resulted in a 40% decrease in cancer recurrence. This included easily-adoptable, low-cost programs such as brisk walking.
I want to stress: they weren’t talking about doing crazy-high amounts of exercise, but simply adhering to the current physical activity recommendations for US adults, which are as follows (summarized by the American Heart Association and taken from their website):
Sadly, only 13% of recent breast cancer survivors actually met those exercise guidelines, and that number dropped even more as time went on. Consider how that affects overall cancer rates, when we talk about our chances as survivors: if the vast majority of the population is not engaging in a beneficial habit, the reported recurrence rates will reflect that. However, if you do incorporate exercise into your life, one could argue that your chances of recurrence are significantly improved over the numbers usually cited.
In addition, an increase of at least 10% of body weight after breast cancer diagnosis, which unfortunately happens often, increased both risk of recurrence and mortality. Again, patients who exercised were able to avoid this weight gain, improving their chances for disease free survival.
Nonetheless, while it seemed relatively straightforward to achieve the percent reduction in recurrence, the researchers stressed two very important points: (1) this reduction came after finishing treatments, not in lieu of them, so one should not assume that exercise would necessarily take the place of conventional cancer treatments, and (2) sadly, some cancers will recur even if the survivor is doing everything “right” and so if there is a recurrence, it should not be taken as the individual not doing enough. That’s the cruel unfairness of cancer.
The second study was original research with high-risk breast cancer patients by Cannioto et al. (2020), published in the Journal of the National Cancer Institute (Open Access link here). The study participants filled out a questionnaire about their exercise habits at four time points: (1) when they enrolled in the study after diagnosis (this question asked about pre-diagnosis exercise habits), (2) during chemotherapy, (3) one year after finishing treatment, and (4) two years after finishing treatment.
Once again, exercise was shown as having a significant impact: women who met the guidelines for physical activity (150 minutes/week of moderate exercise) before, during and after treatment had a 55% lower risk of recurrence and 68% lower risk of dying than those who didn’t meet the guidelines.
Even those who only started exercising after finishing treatment still had a significantly reduced risk of both recurrence and death compared to those who didn’t exercise at all. Additionally, benefits were also seen for those who consistently exercised, even if they didn’t fully meet the guidelines. So it seems that any exercise that these high-risk cancer survivors did was still better than not doing anything at all.
The same holds for you!
Both of these studies convey the importance of engaging in physical activity. Exercise is critical for the well-being of all humans, but even more so for breast cancer survivors. Think: when we receive a cancer diagnosis, we are ready to undergo potentially dangerous treatments, risking debilitating side effects that leave us bald, exhausted and wretched.
So why not engage in something as beneficial for body and spirit as moderate physical activity to help prevent the possibility of having to repeat the cancer treatment again?
A few more bits of information:
The easy-to-read executive summary of the US Physical Activity Guidelines for Americans can be found here.
For a plain-language synopsis of the Hamer and Warner (2017) review, see this Healio interview with co-author Dr. Ellen Warner.
Keep in mind that terms such as “moderate” and “intense” are relative to YOU. someone just starting out is not going to be able to handle the same level of intensity as a highly-trained individual, and there’s nothing wrong with that. Start where you are–it’s okay.
Finally, Dr. Robert Sallis, chairman of the American College of Sports Medicine’s Exercise Is Medicine inititative, has said, “If we had a pill that conferred the proven health benefits of exercise, physicians would prescribe it to every patient and healthcare systems would find a way to make sure every patient had access to this wonder drug.”
Although this is a blog about cancer and mindfulness, I hardly think there is any lifestyle habit as effective as exercise at helping survive cancer. And what better time to discuss this than the start of a hopeful new year?
I’ve been certified as a personal trainer by the American College of Sports Medicine (ACSM) for well over a decade, and although I haven’t actively taken on clients, I’ve had enough time to develop my own fitness philosophy. I must stress, this is a conceptual post and not designed to guide you to specific exercises (although I mention some modalities as examples). However, if you’ve had trouble getting your head around how to maintain an active lifestyle, these ideas may help.
In my experience, there are three critical aspects to a successful exercise program: (1) consistency, (2) progression and (3) balance.
This is the most important concept of my three and worth spending the most time on.
Consistency is the concept that seems to be most difficult for people, and it’s usually the “make-or-break” aspect of fitness. It’s quite simple to get motivated to start a new program, whether it be signing up for classes, planning out home workouts or simply deciding to go for a brisk walk every day.
The hard part is sticking with it. But I can promise you, that’s where the magic is. Be realistic about how much time you have to devote on a daily basis and what your exercise will consist of. This should not be something far out of your realm of experience or else it will be too difficult to maintain. Make it familiar.
For example, if you do not already have a consistent history with a piece of exercise equipment (say, treadmill), do not purchase one under the assumption that the high price tag will surely motivate you to use it. It will not. The greatest workout you’ll get with it is carrying it to the basement or attic after you can no longer stand the guilt of watching it gather dust.
If you can’t maintain your workouts, you will have to go through the “beginner” phase every time you summon the wherewithal to restart again.
That also means going through “beginner soreness”. Honestly, there’s little pleasure in a Groundhog Day-like experience of not being able to get past the little aches and pains you might feel after getting your body into motion again. Don’t do this to yourself.
How to avoid it? Look at exercise as a lifelong habit, not something you do just to “get in shape” for a specific event like a wedding or reunion. Take smaller bites of exercise, something very doable that you won’t dread, especially if you have negative associations with workouts. Set goals like “train 5 days a week” and plan them out, not “lose 15 pounds” or even worse “look better” (what’s that?). It’s more motivating being able to tick off a specific, finite goal than never reaching one that’s vague, arbitrary and even judgemental.
And DO consider it “training”. You are training for living the rest of your life with more ease, maintaining your flexibility, balance, strength and endurance just that much longer. As in the tale of the tortoise and the hare, starting something that seems “not vigorous enough” but that you can see yourself doing, say, every day, in a year will put you miles ahead of someone who started an ambitious and complicated exercise program and burned out in a matter of weeks.
Look at it this way: the trillion-dollar exercise industry is betting on you giving up, and so it always comes up with a new shiny object to tempt you with. Often the program is unsustainable and the promised results are unrealistic. You don’t need that. You need consistency.
Again, decide what you can do and do it regularly. Realize there will be days when it won’t be possible to get it done. That’s okay – no guilt, no shame. But then get right back to it as soon as you can. Think of every workout as something positive and precious that provides you with health benefits that no one else will be able to take away. Each day you exercise is one more step towards establishing a habit that will lead to a lifetime of fitness.
IMPORTANT: Put up a high-visibility calendar where you can mark off your workouts and easily see how consistent you are.
But what if it gets TOO easy? That’s when the next pillar comes in…
Once you’ve established an exercise habit, your body will eventually adapt to what you’re doing. This is a very good thing. It also means that it’s time to change things up a bit, always giving yourself permission to dial back down to what you’d been doing previously if you have a harder time getting going on any given day.
The trick is to maintain consistency while also challenging yourself. For example, if you were doing a walking program, incorporate bodyweight exercises (squats, modified push-ups) that you can do along the way. Climb more hills. Pick up the pace.
If you want to get a PhD, you don’t keep taking freshman-level classes. Challenge is where growth happens. We get an unmistakable sense of satisfaction putting in the work and seeing results.
This is also where your self-confidence blossoms. And that’s exactly the bouyed spirit that keeps you going.
Don’t ramp everything up at once. Add a little at a time, but definitely make it count. Be realistic about whether or not you’re challenging yourself: if you need to push it even more and can do so safely, go for it. If you honestly try but can’t do as much as you expected, halve the amount and try again. Don’t beat yourself up. You will get there. But don’t short-change yourself either.
Most importantly, unlike high school PhysEd class, you’re in charge. That also means you’re responsible for your own progress. Some workouts will be better than others, but always remember, doing anything is STILL better than binge-watching Netflix with a bowl of chips on your lap. Congratulate yourself for making the decision to exercise!
Hey, why not watch Netflix while marching in place? It still counts so write it down!
So let’s assume that you’re being consistent and gradually increasing the duration/intensity of your workout. That’s perfect, but there’s one more pillar to consider…
In this case, I don’t mean balance as in being able to hold tree pose throughout your entire lunchbreak. I mean are your workouts well-rounded? I’ve seen runners do little else but run. If this is you, incorporate some variety into your life. Your running will improve if you are also training for strength and flexibility.
Here’s a simple analogy for balancing out your workouts: imagine getting a massage regularly, but on only the left side of your body. That side will feel great, but you’re missing something. Your right side needs some love too. Eventually that imbalance will affect you negatively.
Exercise programs are best when they are a melange of endurance, conditioning, strength work and staying limber. It is extremely tempting, once you become adept at an exercise modality, to keep at it at the exclusion of everything else. After all, you’re an expert in it. But you’re also opening yourself up to injury and that’s something no one needs.
Take the time to explore different modalities. Often a type of exercise (say, yoga) can cover a number of bases, but you will still need to supplement with other exercises to stay truly well-rounded. Even strength training (which I consider critically important, btw) can have a cardio effect, but much will depend on how your workout is structured.
Do some research but don’t over think this. Just make sure that you are supporting all your body’s needs. Taking the runner’s example again, strength training will help you maintain muscle mass that you might lose from too much running, and it, along with flexibility and mobility work, will help prevent overuse injuries.
This doesn’t mean that you have to significantly increase the number of workouts you do, just that you have to be creative in what you add to your exercise session. The idea is to incorporate what else your body needs to keep it humming optimally. And then, write it down.
Bottom line when you’re just starting out? Move. Even if you don’t really know what exercise you “should” do, just find a way to move. Dance. Wave your arms over your head. Break up sedentary times as much as possible. If you sit for an hour, stand up and walk in place for three minutes, swinging your arms. Don’t be afraid to work up a sweat.
Then keep doing it.
Above all, make it pleasant, so that you look forward to exercise as a break from those things in our environment that keep us sedentary. The human body was meant to move. That is its natural state. Give it the opportunity to do what it’s supposed to do, then let it recouperate and nourish it with healthy food. The idea is to start now and keep going for the rest of your life.
Being an avid exerciser enable me to recover from cancer treatment much more quickly. Up until my last couple of infusions, I was rowing and lifting weights within a week after each chemo (mine were spaced three weeks apart). In an out-of-control situation like cancer, exercise was one constant that made me feel like I still had a grip something, and that made the whole experience better.
This being the last week of 2020, it’s a good time to write about establishing new positive behaviors. I myself am working on biofeedback practices to increase my heart rate variability, commonly referred to as HRV, and balance my autonomic nervous system (ANS) since I have a history of being very “sympathetic”-heavy (that is, “fight-or-flight”).
This is particularly critical for me as a cancer survivor since stress is closely associated with inflammation which is linked to cancer. So bottom line, I consider getting good at calming myself a matter of life or death. Most of my life has been a runaway train as far as stress is concerned.
To achieve this, I’m using a smartphone app called Elite HRV (but I’m sure there are others). In the biofeedback section, the app recommends two daily breathwork sessions of at least 20 minutes each. Now, that got me thinking about whether I had that kind of time available. As it is, come hell or high water, I meditate at least 30 minutes a day, often using a variety of apps and a mixture of guided meditation and breathing practices, in addition to informal meditation sessions.
But adding another 40 minutes? Seems unlikely, since I’m often going from morning to night without much of a break, especially because my bedroom is also my COVID-office.
Still, is it really unlikely? Yes, it’s true that I’m working longer hours, but I’m still making room for non-work things that are critically important to me, like exercise. So I find time for what matters.
And if I review my workday, I know I experience periods of “zoning out”, often when something on my computer or phone catches my attention. These breaks aren’t long, but it’s not uncommon for me to get caught up in focusing on something else along the way…before you know it, that can be 10 or even 20 minutes.
And sometimes it’s really long. Case in point: over the weekend, my daughter and I ended up (and I seriously don’t know how we started on this, but…) watching several hours’ worth of YouTubers streaming video games. I don’t even play a lot of video games, but I was tired and became transfixed. And we did do this for several HOURS because one YouTube video often leads to another. That’s a chunk of my life that I will never get back, and in retrospect, that time could have been spent more wisely.
Now I realize that it would have been so simple to retreat to my bedroom for less than the length of one of those videos and eke out some quiet time to turn inward. I could have returned to the videos afterwards without feeling like I’d missed anything.
All I need is that little reminder, the mindful awareness that meditation and breathwork are available to me at literally any time. Even if it’s not a full 20 minutes. Five or ten minutes interspersed throughout the day will still offer benefits, so they’re still worth doing–and I’m talking about in addition to my regularly scheduled sessions. And who knows? Once I begin, I may find it possible to stretch those few minutes into a few more minutes. And a few more.
This is particularly important because as lovely as it is to have a longer calming meditation, the ultimate goal for me is to seamlessly incorporate mindfulness into my everyday activities, so that I am always able to take a deep breath and pause before my ANS gets triggered into “fight or flight”. It is especially those little blips of meditative time–a minute or two here or there–that help reset my nervous system.
Taking a mini-break for mindfulness may seem so simplistically obvious but I’m willing to bet that many of us don’t even entertain that possibility. We’re convinced we can’t shoehorn another thing into our busy days. If a sticky note by our computer reminds us to take five deep breaths, for example, and we begin incorporating that into our day, we see that there is more room for pausing than we imagined. Just opening up that breathing space can not only invite more consistent practice, but also slow the hectic pace of our lives.
I meditate. It is a daily habit that I engage in with the best intentions, but I am a victim of my wandering mind. Some days are better than others, most days I struggle with distractions.
Often, I can be halfway through a sit before I realize that I’ve been clenching my jaw or tensing my brow or gripping some other part of my body, thinking I’ve been relaxed but I’ve been kidding myself.
There are times that I’ve managed to stay with my breath, and then start getting excited that I’ve stayed with it that long, and then start imagining how I might look, staying with my breath…and of course, then I’m no longer meditating.
So it goes, day in, day out. Everyday, once or twice a day, or maybe even more. Some days feel like a complete waste, like I’ve got a freeway running through my head and have no idea what I’m doing.
But once in a while, I get a few moments of golden light. They may just flicker in and out, but when I look back at those moments I know everything flowed.
And those mindful sessions make all the other ones worth the effort. Every time I pause before reacting. Each time I recognize my body’s physiological response to a stressor. When I remember that I don’t have to respond with anxious energy. That I get to chose what happens inside my head. That I can just say, “Sh-h-h-h.”
That I can stand back and observe the storm without getting sucked into the whirlwind.
I meditate and often don’t do it well. But I still meditate. As of this posting, 1,380 days in a row, originating with the most frantic breaths shortly after my cancer diagnosis. Even through chemo, when I thought I wouldn’t make it through the night. Sloppy meditation sessions that seemed to be going nowhere.
Those imperfect meditation sessions have changed over time, imperceptable on a daily basis. Perhaps they have worn away a few rough edges the way constant drops of water oh-so-gradually wear away a stone. And just as an indentation forms where the drops hit, so meditation has molded a little basin for me, a bit of extra space in my mind that provides just that much more breathing room.
I am still at the very start of my mindfulness journey, so imperfect and stumbling. But even with the little that I have achieved, I am light-years ahead of who I was before I started, wide-eyed with fear and not knowing how to stop the rush of emotions.
It was terrifying then because I didn’t realize what was happening. Now I know, and that makes all the difference.
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.
If you’ve had cancer, you know that the information presented to you following your diagnosis is like a crash course in medicine.
All of a sudden you’re hit with explanations of complex bodily processes, unpronounceable medicine names, and a deluge of statistics. You need to digest all of that and agree to a specific treatment plan, of which there may be several for your type of cancer. It can be overwhelming. But then again, what about cancer isn’t?
Making the “right” decision for you can be difficult. Many of us gravitate to the Internet for information, but that can be a minefield of questionable value. With some luck, we eventually get to PubMed, which is Ground Zero for medical information. PubMed is the National Institutes of Health’s (NIH) database of published research on a variety of topics. These articles focus on biomedical fields, but the range is quite broad.
There, you can find the background information for the treatment decisions that your oncologist has made about your specific situation.
I would venture that bringing a relevant scientific article to your oncological appointment beats mentioning an ad for a new medicine where the announcer says, “ask your doctor if [insert med name here] is right for you”. But of course the commercial is easier to understand, while the research article is written in “science-ese”.
So, if there’s something that can serve as a true ally as you navigate through your cancer experience, it’s being science-literate. That doesn’t mean you need a PhD in some medical research field. But it does mean understanding how researchers set up experiments, what they’re actually studying, and whether those results are valid for your situation. And then being able to search through clinical studies and see whether they can inform your decisions on cancer treatments.
For digging deeper into the specifics surrounding clinical research, I highly recommend Coursera’s free class, “Understanding Medical Research: Your Facebook Friend Is Wrong.” I use PubMed at work and have studied research design in Psychology, but I realized that I needed a crash course in evaluating clinical studies if I wanted to use scientific literature to make informed decisions about my health. “Understanding Medical Research” is an excellent survey of the types of studies out there, basic research design, terminology, relevant statistics and how to judge whether the study is useful for your personal situation, not to mention warning flags to watch out for.
The course is free if you don’t need the Coursera certificate. And the instructor, nephrologist F. Perry Wilson, MD from the Yale School of Medicine, is entertaining and occasionally silly, making what could be a dry subject much more palatable.
This might not be the first online class that you’ll want to tackle right after your cancer diagnosis. For that, I would highly recommend seeking out a mindfulness meditation class. But after you’ve gotten relaxation skills under your belt, learning about how to access medical literature and decipher the results may be one of the most important things you can do for yourself.
If you’re not ready to commit to a course on understanding medical research, below are two informational links that can still get you on your way to figuring out what all the research means:
The National Cancer Institute (NCI) has a blog that explains findings from the latest cancer studies in lay terms, called “Cancer Currents”. The sidebar on the right allows you to zero in on more specific topics. This is the most science-based information that you can get on cancer, keeping in mind that studies can only speak to what they have specifically been designed to research.
For some general information on clinical studies, NIH’s webpage on “Understanding Clinical Studies” is a good place to start. This is a one-page easy read with a infographic that explains basic facts about clinical studies.
Since this week is the Thanksgiving holiday in the US, it’s a good time to revisit the practice of gratitude. I wrote some time back about my nightly practice of writing down three things for which I was grateful. It was a lovely way to close the day on a positive note, as I would always be able to jot something down, even if my day was difficult.
However, after a number of weeks of this, I found it harder to be consistent. I would skip days, and often on the days that I could find something to write in my journal, the process would feel forced. The more I had to work to pull out little things to be grateful for, the less meaningful they became. Eventually, and regrettably, I stopped the nightly practice altogether.
Apparently, this is to be expected. Psychologist Sonja Lyubomirsky and colleagues from UC Riverside found that journaling once a week was more effective for boosting happiness than doing so more frequently. I can see why this would be. Everyone has stressful days that can wring any semblance of happiness out of us. Yes, while I found something to be grateful for any given day, if the overwhelming feeling was that of negativity then I was simply going through the motions of trying to find something–ANYthing–to write down. For me, this waters down the effectiveness of the exercise.
But writing on a weekly (or less) basis allows me to focus on the most powerful feelings of gratitude, and those have a stronger uplifting effect on me. They last longer and evoke a joy that daily journaling couldn’t.
In my life, there have been times that have felt very dark and heavy. In the moment, I have not always been able to find anything positive in them. Take, for example, cancer. Those weeks around my diagnosis were literally the most terrifying of my life, because I felt that this situation could actually cost me my life.
Quite frankly, if someone had told me then that I should stop and think of all the things I was grateful for, I might have told them to go to hell. The intensity of what was taking place right then–the shock and disbelief, the despair, the sheer fear–was too great to let in any light. For someone to have suggested that I should essentially “look on the bright side” would have felt like they were dismissing the reality of what is cancer.
But as I passed through those worst weeks, I noticed things that bobbed up to the surface that I could be grateful for, so much so that at times I was overwhelmed with gratitude for how events had unfolded compared to how things could have been. I still had cancer and my life was still upended, but I felt a sense of grace about it all.
So if were to give one piece of humble advice to someone going through desperate times, it would be to remain open to the possibility that no matter how dark things may seem right now, when you finally have a chance to take a breath, you may see that glimmers of hopeful light have been shining through all along.
As my interest in and personal practice of yoga has increased, I’ve noticed something peculiar about images of yoga. They send a message that you have to be young, slender and unnaturally flexible to be a “real” yoga practitioner. That seems daunting to anyone who doesn’t fit that mold.
I noticed something similar after I became certified as a personal trainer. I myself loved the feeling of strength and freedom I got from exercise; however, many people I spoke with were reluctant to go to a gym because they felt they needed to be in a certain physical condition before they even started. At the same time, they were daunted by the idea of striking out on their own. Even worse, in personal conversations with experienced exercisers and even other trainers, I found many would poke fun at those who were just starting out.
Come on, everyone has to start somewhere. An expert is just a beginner who stuck with it.
I thought yoga would be different, given the emphasis on one’s inner state. But I had to get over my apprehension about trying to fit an older creaky body into the unbelievable positions modeled by the yoga teachers I saw online. It was daunting. While I still felt strong, I seemed to lack that which yoga demanded. There were many poses that my old injuries and life-long inattention to flexibility would prevent me from doing.
I mean, google Flying Dragon pose and you’ll see why. Heck, it doesn’t even have to be as exotic as that. Go to Pinterest and search for yoga images – the results seem almost outrageous, with every yogini outdoing the one before them. Is that what we’re supposed to aspire to? I don’t see anyone even close to my age. Are they all in physical therapy? Or traction?
My spine doesn’t bend like that.
But this is yoga, right? There are quite enough poses that most everyone can learn and use to build a regular yoga practice, no matter what the images on the Internet suggest. More importantly, there are modifications for whatever your own body will allow. Can’t put your forehead on your knees in forward-fold? Then how about a ragdoll variation. Guess what, it’s still yoga.
That doesn’t mean that what those super-bendy instructors are doing isn’t impressive. But I view them much as I view someone free-climbing Yosemite’s El Capitan. With awe and admiration for their abilities. And then I delight myself by finally being able to touch my toes again, thanks to my yoga practice.