What used to feel like a jumbled mess of emotions and sensations before, now makes sense to me. Intense feelings don’t come at me as quickly as they used to and there’s more space between a stimulus and my response to it.
There is a PAUSE.
That doesn’t mean that I’m perfectly calm and don’t get frightened, anxious or frustrated. I do. You can see that in some of my posts, because I try to be very honest about what I’m experiencing in the moment. But no matter how deeply I dip into fear, I don’t stay there.
I can find the CALM amidst the CHAOS.
When things get intense, I know how to feel into my body. I recognize the physical sensations and I focus on releasing them. Smoothening them out. Breathing through them.
All those abilities were always available to me, but I resisted calming myself. I am aware that on some level I used to feel that anxiety was a necessary way to express my fear; that it was necessary to descend into fear to express my emotional state to others, so that I would be taken seriously. While it sounds odd to read that now, it was only through learning that I was able to soothe myself that I learned I didn’t need to commit to the torture.
I return to the PRESENT.
When I start thinking about fretful things in my past or fearing the possibilities of the future, I can now recognize that my mind has drifted away and I can pull myself into the present, feeling into my bodily sensations. I can break through the dark tumult that’s enveloping me. And suddenly, the noise is gone and I’m standing with my feet firmly planted in my room. I hear the birds and I find peace.
I know I am SAFE.
I realize that there were behaviors that I engaged in during times of anxiety in the past, like pacing back and forth, that actually soothed my nervous system. Just as rhythmic rocking soothes a child. My body was wise and knew what I needed. When, years ago, the burden of my workload chained me to my desk and prevented me from movement, my anxiety skyrocketed and became almost unbearable. That was a clue, but at that point in my life, I didn’t know how to listen to my body.
Now I know what I must do to calm down and I allow myself to do it. But this change didn’t come about suddenly.
It takes PRACTICE.
Practicing mindfulness meditation when I am at peace allows me to build up the habit that carries me through difficult times. I practice daily. Somedays I can focus on my breath perfectly; other times I lose myself in thought shortly after I’ve begun. Regardless, I don’t give up. Even the “bad meditation” days are better than no meditation at all. Each session strengthens my mindfulness habit.
Ever get the funny feeling that something’s wrong?
Like things are a bit “off” but you can’t be sure? I’ve been dealing with that ever since I got off letrozole, an endocrine therapy for breast cancer with a reputation for being difficult to take.
As of this posting, I’ve been off letrozole for 117 days exactly–yes, I’m counting. I’m still shaking off side effects like stupid-crazy joint stiffness, but at least I can tell things have improved.
That’s not what I’m talking about here.
Right now I’m having some “really intense” memory and focus issues. I’ve put “really intense” in quotes, because I talk in superlatives so that my concerns are taken seriously. It’s a bad habit, especially when speaking to an oncologist, because it’s a sure way to end up in an MRI tube. Again.
In the past, my oncologist suggested that my memory problems might have been related to anxiety and not the medications I was on. That’s quite possible, although it’s hard to tease apart “anxiety” and “med side effects”. I mean, simply being told you have cancer causes an immediate spike of the Stress-O-Meter. For someone as anxiety-prone as me, it’s like I’m constantly red-lining.
Now I’m off the endocrine therapy and my memory and distractibility seem to have gotten even worse. What I had before wasn’t like THIS.
It’s kind of like saying, “This hurts. I think I’m being hit on the head with a hammer.” But then you actually get hit by a hammer, and think, “WHOA, now THIS is being hit on the head with a hammer!”
If thoughts are beads on a string, my beads are dropping off at a constant rate, leaving me wondering what I was about to do three seconds ago. And getting distracted by shiny objects. Couple that with having to learn a complex new financial system for work (grrrrr, Larry Ellison), not having helpful documentation to do so and having to go through that while being mainly confined to my bedroom for over a year…yeah, it’s a mess.
Because my breast cancer was HER2+–which has been associated with metastases to the brain–my anxious little self immediately thinks, “Wait, maybe this is cancer’s spread stealing my thoughts???” I think that I will forever be jumping to that as the first possibility.
That’s not completely unreasonable, either. According to “Medical News Today”, memory problems are listed as one of the symptoms of brain metastases, along with headaches, stroke, seizures, confusion, dizziness…okay not really experiencing any of those.
And the Mayo Clinic metastasis website asks: what are the most likely causes of my symptoms? So, I admit, a brain tumor probably isn’t, given all the other more likely possibilities: menopause, work stress, loneliness, lack of purpose…and *cough* listening to Twitch video streams while I’m trying to focus.
So really, these memory issues could be a completely normal effect of menopause, but in the cancer context the possibilities are frightening. It takes a lot of perspective to be able to look at what’s going on and realize that it’s not aberrant or dangerous. I feel like an idiot for jumping to the worst conclusions, but here I am…
When I look back at the past decades, I feel exhaustion sweep over me.
Cancer was not the only negative thing to come up in my life. There have been quite a few horrible things that have taken place, and at times I get overwhelmed by the thought of them.
This is not where, at my age, I thought I would be, and that’s disappointing.
But I realized that part of this disappointment is the lens through which I view things. Granted, I’ve had my share of misfortune, but when my life seems to be sinking into bleakness, it’s time to do something about it.
This calls for a change in perspective.
So I have undertaken a project. I am writing out the story of my life, but with a slightly different bent: when I come across a negative event, I pause and consider whether I can find something in it to be grateful for. I write about how I overcame it, rather than how bad it was, or how unfair and so unlike what others have had to deal with. I place emphasis on the outcome to avoid getting mired in anguish.
A difficult person in my life? I’ve learned that I’m not responsible for their happinesss, only for my own. A disastrous financial situation? I’ve found that what I perceived as a terrifying outcome can be overcome, and there is a light on the other end and a path by which to maneuver through it. A frightening health crisis? I now know I have met head-on the most daunting disease I ever feared that I would have and somehow made it through treatment.
I am still here. Re-framing the bad stuff is work in progress and it’s not always easy to let go of my familiar, well-worn, negative narrative, but, yes, I am still here.
I’ve discovered that my life is a story of perseverence. There have been numerous hardships and it’s true they’ve left deep scars, but I am aware of how they may twist my attitude, which has removed some of their negative punch. While I may look around and wonder why things have gone a certain way, I also see what I’ve learned and how I’ve matured.
If you want to give this a try yourself, there are a few things to keep in mind: This is something for you to undertake about your life, not to be forced into by another person, nor push someone else into.
This is not about looking through rose-colored glasses or feeling that your concerns are not taken seriously, nor is this a squelching of negative emotions instead of dealing with them. It’s a step to the side for a different view. This doesn’t mean that those events were not disastrous or those who perpetrated bad things don’t deserve punishment.
You have a right to be upset. You are heard.
Re-framing your life in this way means that you give evidence to the exquisite being that you are, and to the power that you have within yourself. If you feel as though you’ve been chewed up and spat out, be gentle and start slowly.
When you’re ready, invite healing by releasing the burden of negativity and, pen in hand, allow yourself to reveal your strengths.
“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.
My recent post, Just Show Up, about releasing the need to fight through breast cancer treatment, left out an important concept.
My cancer diagnosis was what I deemed the “worst-case scenario” from the viewpoint of everything that came before. The overwhelm was a tidal wave that caught me and spun me around. Disoriented, I struggled to breathe and find my footing, but it was too much and I was poorly equipped to deal with the news.
I went through the motions, stumbling through the appointments that now multiplied in number. There was so much information to wade through, decisions to make, upcoming treatments to fear.
Then a co-worker whose wife had been diagnosed with cancer some years before sat down with me and gently offered a valuable piece of advice.
I didn’t have to handle everything at once. Some the decisions could be made later. Each day would bring answers and more clarity. There was no need to load up on all the information. It didn’t help anyone get through these days, all it did was weigh them down.
The path through this entailed focusing on what needed to be done now, and then working on doing that and only that. Just taking that one easy step forward.
All that stuff in the past and the things to come, you can release them. Don’t carry that extra burden with you. Just focus on what’s happening now. And now.
The thing about cancer is that the news hits you hard at once.
And it’s not like you get time to get used to it, because the diagnosis is LOADED. All those scary things that you’ve ever associated with the “big C” rush at you and there’s no real way to protect yourself.
It would be terrifying for anyone, but those of us currently in mid-life grew up at a time when cancer treatment was not as refined or targeted as it is now: visions abound of hospital beds, bald heads, bodies wasting away, vomiting, hopelessness. Most cancers were frequently fatal and diagnosis was the beginning of the end.
As we’re trying to process what this all means for us, for our future and for our families, others try to prop us up with cheers of, “Be a badass!” “Stay strong!” “You’ll beat this!” “You’re a fighter!”
So between juggling the cancer news and the “hang tough” messages from those around us, everything gets overwhelming. Our oncologist lays out a treatment plan and suddenly we need to learn a different language. Tumor types, chemo drugs, clinical terms, side effects.
I distinctly remember wanting to hide under my bed and wait for it to go away. There was so much I needed to do and I didn’t know how to get through it all. It seemed like an immense amount of work for one person.
And then it hit me. All I needed to do was show up.
I didn’t need to be the warrior that everyone was pushing me to be. The mere fact that I was going to my appointments on my scheduled day was enough. I wasn’t going to win a prize for being the best “infusee” or for absorbing the most radiation the fastest.
I didn’t have to fight. All I needed to do was endure and allow. To accept what was going on and move through it. And to breathe.
I brought my office work with me to my first infusion. I was going to be there for at least 5 hours so I figured I should use the time “wisely”. I fired up my laptop but soon the Benadryl that I was given to prevent adverse reactions kicked in and brought on drowsiness.
Suffice it to say I might have answered an email here or there, but did little else. The same thing happened during the next infusion, and the one after that. Eventually I realized that the wisest way I could spend my time was by giving myself permission to rest and ride out the treatments.
When infusion day rolled around, I learned to put aside my work duties and family responsibilities, and simply be. It was such an uncomplicated concept, the benefits of which rippled out beyond my treatment. Why did it take cancer to teach me that?
If there is a time that I’m going to feel anxiety, there’s a good chance it’ll be during my yearly mammogram. This year it came around the same time that my oncologist gave me permission to stop letrozole (and there was stress preceeding that appointment), but also great fear associated with my perceived cardiac arrhythmias, for which I have several visits with a cardiologist lined up.
To top that off, a family stressor followed on its heels, which I won’t go into but one that portends difficulties in the future. This last anxiety-provoking event used the previous stressors as a springboard and exploded into something even bigger. I was primed for anxiety and it took me for a ride until I found the traction to dig my heels in and slow down.
The worst part is, none of this stuff will simply go away.
Often, when people speak of anxiety-provoking events, they’re described as stressful things like a tense meeting with the boss or college finals or tight work deadlines. Admittedly these are all nerve-wracking, but they are also time-limited.
Then we have something like cancer.
I remember listening to a talk about anxiety where the lecturer tried to give the audience perspective about what was really going on, and he asked: what’s the worst thing that could happen? “You’re not going to die,” he assured us. And it’s true: let’s say that you fail all your final exams, but you’ll survive, even if you have to retake the classes.
Cancer survivors can attest to the fact that we suffer a different flavor of anxiety. There is no deadline on our stresses. They are thick and cling to us, like caramel sauce on the inside of a coffee cup, thinned by the passage of time, but leaving a film on our lives. Our hope is to get past the two-year mark, then five. Ten, if we’re so lucky.
Often, we hear about the success of treatments only to realize that the success is based on the majority of patients lasting until the end of the study, which might have been only five years.
Having someone tell you that you have a 95% chance of surviving five years is, well, underwhelming, especially for those of us who had premenopausal breast cancer. I mean, yeah, I HOPE I can last five years.
So, what to do? If there were ever a time to practice non-attachment, this is it. For some of us (present company included), it is excruciatingly difficulty to release expectations–I want, even NEED, to be assured that everything will be okay and then rest easy with that.
But I promise you, clinging to the desire for things to be different only causes suffering. It also robs you of the joy of what you are experiencing right NOW–a beautiful sunrise, the softness of a pet’s fur, the richness of a cup of coffee, the coziness of a warm blanket. We are so wrapped up in fears of what the future holds that we miss the magic of what is before us.
Now is the only moment that exists, so truly, it’s the only moment that is real and certain.
Everything else is either history or what we concoct in our minds.
So this time of the year, I have to sit back and sense the Earth under my feet, feeling into how it supports me. This is what it feels like to be here now. No matter how many times I remind myself of this, I know I’ll have to do it again when the next stressor hits. That’s okay.
This isn’t the first time I’ve written about anxiety and it certainly won’t be the last. But practicing mindfulness, every time I go through this experience, I reign in my emotions a little earlier and start feeling better a little faster. When I look back at what happened I realize I’m making progress, and that’s what really matters.
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.
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.
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.