“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.
Decades ago, my introduction to yoga took place in my parents’ library, a small paneled room with wall-to-wall, floor-to-ceiling books. There I found an illustrated guide, replete with black and white photographs of odd contortions and strange nasal flossing. It seemed weird.
I had barely begun elementary school, and at that age was a natural-born yogi, as many young children are. Lotus pose? I could get my legs into position without using my hands. King Pigeon was no big deal, and nothing hurt when I folded myself up. I didn’t have a regular yoga practice at that age, but I would get occasional exposure to yoga moves at school, and I imagined all yogis wore diaper-like pants and lived on mountaintops.
High school provided an opportunity to do more. One of our French teachers practiced yoga, and I took a season of classes with her. Really, I remember little from that time. At that point, I was still limber but not as lanky, and yoga wasn’t particularly exciting. Volleyball was my game and I had no appreciation for how yoga could improve my playing. Had I practiced it properly, yoga could have helped immeasurably and prevented many a lost serve. But I lacked introspection and so barreled on as before.
Yoga resurfaced in my life now and again, but obsessed with more active ways of sweating, I steered away from it. I swam, ran and eventually strength-trained my body into shape. Yoga didn’t have a place in my view of what fitness should be.
Holding poses for a prolonged time? Not for me. Sweating through hot yoga? You’ve got to be kidding. A friend sustained a serious back injury from a yoga teacher who tried to force her into a pose. That was it; I was done with the idea of incorporating yoga into my already packed fitness routine.
Then I got cancer.
And I realized that my mind was victim to free-ranging anxiety. Desperate, I immersed myself in learning to meditate. I know they say that you need to find calm in the midst of chaos, but being thrown into chaos is not the best place to learn to be calm. I limped through cancer treatment and clung to the hope of peace. The only relief came from my love of fitness and drive to exercise as soon as the worst side effects of each infusion had passed.
Still, I pushed yoga away. Not interested. I needed to get my body back to where I’d been pre-cancer, not do slow movements that might tweak something and burned too few calories.
But the more meditation I did, the more mindfully I moved, yoga kept coming up, like a refrain in a song. Movements paired with breath.
And then, it hit me. Movements paired with breath. I was all about the breath by then. Yoga provided the movements. And I found bliss.
When I opened myself up to yoga and invited it into my workout routine, something magical happened: my body started stretching out. All that tension that I’d carried for decades that had gradually tightened me up started releasing. My fingers found the floor in a forward bend again, and gently brought my palms with them. My heels easily pressed against the ground in a downward dog, with little peddling required. Moves that I could once do became available to me again.
So here’s the thing about breast cancer: after surgery, you lose some mobility in the affected side. Even now, side bends stretching my left side “pull” uncomfortably compared to my right side. Anyone who’s had lymph nodes plucked out of their armpits knows that that area stays tender for a good long time. Often, this brings an imbalance to the body.
My workouts had consisted of pounding myself through rowing, conditioning intervals, strength training with heavy weights and swinging kettlebells around. But without yoga, something critical was missing. Initially, I was afraid that “sacrificing” exercise sessions to yoga would result in faster decline of my physical ability and a push towards a more sedentary existence. Oh, how wrong I was! If anything, yoga has moved me towards vitality, flexibility and a sense of youthfulness that straight strength training had never allowed. Yoga opened up my whole body and allowed it to breathe freely.
What this has offered me is another way to look at how my cancer journey is progressing. After the aches and pains associated with never-ending adjuvant therapies, I admit I felt it was all going to be downhill, and that all I could do was desperately cling to my workout routines as my abilities gradually slipped away. Yoga brought back an element of fitness that I’d forgotten, and now, even though I know that I will be lifting less and rowing slower as time goes on, there is a new, perhaps more gentle world of fitness that I have yet to fully discover.
In my last post, I mentioned yogi Eddie Stern’s breathing app. If there were ever an app that exemplified the beautiful simplicity of mindfulness, this is is!
There are several things that make this mobile app perfect: (1) it does one thing and does it well, (2) it is uncomplicated, and (3) it’s absolutely free, with no in-app purchases.
This app is designed to help guide you in breathing. It is based on the concept of resonance frequency breathing, which is deep, slow, diaphragmatic breathing, between about 4-7 breaths a minute, depending on the individual — true resonance is considered to be six breaths a minute. Resonance breathing, “where oscillations in heart rate (HR) and breathing synchronize” (Pagaduan et al., 2019), has been shown to improve heart rate variability (HRV), which is “a key marker of health, mood, and adaptation” (Steffen et al., 2017). You may be familiar with HRV if you’re in training for a sport.
As Eddie Stern describes in his app and on his website, “by breathing at resonance, we enter into an even balance between the two branches of our autonomic nervous system, the sympathetic…and the parasympathetic…” The sympathetic is known as “fight-or-flight” and parasympathetic as “rest-and-digest”, and in our everyday lives, we tend to spend too much time with the sympathetic nervous system in charge.
The Breathing App helps us balance out the two systems via resonance breathing. There are several elements to this app: (1) an informational page, with instructions on setting up and using the app, including info on the science and creators; (2) the breathing ball, which helps you visualize the breath; and (3) the sound breath guide, which provides a tone that guides your inhales and exhales.
You set the timer from 1 to 30 minutes, choose your inhale:exhale ratio (2:3 or 4:4 [for kids]; 4:6, 5:5, 6:6 [true resonance] or 5:7), and decide whether you’ll watch the ball or look at a starry sky, with or without the sound.
And that’s it.
There’s nothing to buy and practicing with it is simple. Of all the mindfulness/meditation apps that I use, this is one of my favorites and I use it to augment my yoga practice. Give it a try!
Fun fact: some well-known names are credited as participating in the development of this app, including Deepak Chopra and musician Moby!
Please note: I’ve included links to various items below, none of which I’m compensated for. If I’m writing about them, it’s because I think they’re excellent and worth recommending to others.
In my never-ending quest to bring more peace into my life, and with the extra time I’ve found in COVID-19 lockdown, I’ve been taking advantage of online class on platforms such as edX and Coursera, and have been impressed with the breadth of courses that are available.
Currently, I’m mid-way through a class on Coursera from New York University (NYU) connecting yoga and science, called “Engineering Health: An Introduction to Yoga and Physiology,” and I am thoroughly enjoying it. This class can be audited for free, or $49 gets you access to the quizzes, a certificate once you’re done (that can be posted on LinkedIn) and no time limit on access to the materials.
The course is taught mainly by three individuals: (1) Prof. Alexandra (Ali) Seidenstein, lecturer and research scientist in the Chemical and Biomolecular Engineering Department at NYU, who is also a yoga teacher; (2) Eddie Stern, NYC-area yoga teacher and author, co-founder of the international Yoga and Science Conference and creator (along with Deepak Chopra, Sergey Varichev and musician Moby) of the highly-rated Breathing App for mobile devices; and (3) Prof. Tommy Lee, senior lecturer in the Chemical and Biomolecular Engineering Department at NYU. In addition, there are interviews with other scientists who have studied or made use of yoga in their research. For me, as someone who’s always looking for scientific validation, this combination of yoga and physiology is very gratifying.
First and foremost, the class teaches basic physiology. If you took survey classes in high school and college, the material will be familiar, and it’s presented in a clear manner with lots of visuals. Topics include physiological systems such as nervous, respiratory, cardiovascular, immune, digestive and much more. Additionally, there are discussions of homeostasis, epigenetics, and the effect of stress on human physiology.
But woven in between all of these topics are instructions on breathwork and yoga movements for beginners, and this is what really ties the course together for me. The yoga is expertly taught by Eddie and Ali, both of whom make the experience very positive and not intimidating. With each lesson, they take the time to connect the physiology topics with what is being taught in the yoga class. This is a novel approach that I have found very empowering: there is a direct link between the work being done in the yoga lessons with functioning of the body.
For me, making that connection leads to a sense of self-efficacy and patience with myself, as it is with consistency of practice that we make change. Even more than that is the feeling that I can affect my immunity against disease (and cancer?) by keeping my stress levels in check. I have always felt that stress played a role in the development of my cancer, and although I cannot prove this, knowing that there is good science behind using such relaxation techniques as yoga and meditation in prevention of inflammation and subsequent disease gives me a sense of control in a situation that has often felt completely outside my control.
As mentioned, I am only at the midpoint of this class. I look forward to the second half and will report back about my overall impression once I am finished. In the meantime, if this post has piqued your interest, I highly encourage you to check the class out!
While it might not seem like a cancer/meditation/mindfulness blog is the place to bring up the issue of racial disparities, I feel this is exactly the right place for it. Because we should all be talking about this in everysituation.
I am white. I grew up with people on television who looked just like me. I had dolls that looked just like me. Companies marketed their products to people who looked like me, using advertisements with actors who looked like me. Even the crayon color called “flesh” looked like my skin, and I didn’t question it. I had school friends who were black, but I didn’t understand their experience. So I really understood nothing. As a child, I didn’t see the problem.
But the problem is massive and we haven’t made much progress since the days of the 20th Century civil rights movement. The main thing that’s changed is that we now have video phones so we’re bearing witness to events that have been going on all along, but unseen by the white community.
You cannot turn 400 years of oppression around with non-discrimination laws, congratulate yourself and proclaim everyone “equal” (read: shouldn’t be complaining), because the inequality has been in our system for so long that it’s what the country runs on. It lubricates the gears of society. And there are people in power who like it that way.
This needs to change and it needs to change now.
If you don’t think that being white infers an automatic privilege, try being a black teen in a hoodie, walking through an affluent white neighborhood.
I feel that I need to revisit the whole letrozole thingie, just to be fair.
In my last post I expressed my frustration with the continued side effects of the estrogen-supressing aromatase inhibitors designed to reduce the risk of cancer recurrence. Cancer survivors face a considerable amount of pressure from our oncologists to stay on these medications, but everyone agrees that their use does not come without health risks or hits to one’s quality of life. The latter is a squishy concept that is not easily quantifiable.
Deciding whether to take medications for the length of time prescribed, or stop them early, comes down to an individual’s tolerance of both the side effects and risk.
So after all the complaining in my last post, the big question I have in front of me is that, given that I’m already postmenopausal — regardless of the fact that it was the medication that pushed me into menopause — if I were to stop letrozole, would I experience a significant improvement of my complaints? And if I could reverse the side effects how long would it take? None of that is clear.
Granted, there remains additional risk in taking an aromatase inhibitor, particularly long-term, as the cessation of estrogen production contributes to aging and age-related maladies, including heart issues, bone loss and broken bones. And certainly, there is gradual collagen and hair loss, not to mention suppression of the libido.
But if we ignore that for now, I have to admit that not all days are as bad as how I described them. I don’t lie in bed staring at the ceiling while every single side effect hits me all at once. I experience them here and there. And most of them are tolerable.
My fear is about the future. If I’m feeling this now, what will it be like in another six months or a year? What if things go downhill gradually and I don’t realize it until later when I’ve slid so far down that nothing is salvageable. That’s completely ignoring the realities of the “now” for the imagined troubles of tomorrow. That is not being mindful!
But unfortunately, with medications such as these, the future is a factor that must be taken into account, and with that comes anxiety. Of course, anxiety always makes things worse. For me, it’s one of the most difficult side effects of cancer, because it magnifies all the negatives, both real and imagined.
I realized after I submitted the last post, after I complained about all the things I was experiencing, that not everything was as horrible as I thought. Things are not “normal”, and the situation is still applying a frustrating pressure on my quality of life. But maybe, for now, can I hold on and get the most out of the benefits of letrozole, and then re-evaluate tomorrow?
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.
I’ve written about pulling back to get perspective, but this isn’t about that. There are times that you can’t handle looking at a situation, and even less getting close and curious about it. Once in a while, you need to cut your losses and allow yourself to check out for a bit.
From time to time, I have dreams in which I’m fighting an adversary (like a monster), and I leap up into the air and float over the baddie’s head. Not all the way up into the sky, but just-just-just out of reach of their clawing hands, where I’m safe.
That’s what it feels like to release my hold on the earth and allow myself to imagine floating upwards. It is a freeing and positive feeling, often helped by music containing binaural beats and a gentle relaxing drone, as if I were being softly cradled and rocked by the sounds.
And then I travel. In my mind, the most pleasant view is that over the water, as if a camera had been set free to follow a broad river, meandering along its twists and turns. Or head across the sea towards the shimmering horizon, as the sun descends to kiss the earth in the late afternoon.
Or letting go of gravity and rising upwards into bright, puffy clouds, so far up that the landscape below blurs into purples and blues as you float high above.
This is not about being present and grounded. There will be other opportunities to sit with difficult emotions and create space for them. This is about being able to give yourself what you need during the more difficult times and escape for a short while, breathing into the spaciousness of being somewhere else.
Take a deep breath and enjoy your flight.
While it is true that avoiding difficult emotions is not a recommended practice, consider this your glass of wine. Just for today, just to catch your breath.
This post is not about politics. It’s about compassion.
Wear the mask.
I have an 18-year-old daughter who works at a local bakery-cafe. While most of her hours were cut, she’s started to get calls to come in again. She’s there to take your order for chicken soup and salad and fresh-baked baguette. She also wears a mask and gloves, for your safety. As her mom, I’d appreciate it if you wore a mask for hers.
She’s not to blame for what’s going on. She didn’t create the virus nor does she have any control over how long the country will be closed down. She’s also not getting hazard pay, nor does she get an allowance. She earns all the money she has. Her job was to pay for fencing lessons, which she has had to stop, but now she’s saving up for college expenses.
My daughter is there to serve you. If you come in without a mask because you feel it’s your right not to wear one, she’s not going to toss you out the door. She’ll give you your food. You risk giving her a virus.
And by extension, giving the virus to the rest of us in her family.
Just wear the mask.
For a few minutes, when you’re in the cafe, wear the mask. It’s not a political statement. It’s a statement of caring and compassion and understanding that we are all inextricably linked to each other. What is good for one of us is good for all.
And I mean, for all of us down here on the ground level. We’re not the movers and shakers, we’re simply the doers and the survivors. We’re not the millionaires who quarantine in luxurious surroundings and get to break the rules with indemnity. We’re your neighbors who share your concerns.
You’re angry? You have the right to be. But you have no right to take it out on my child.
So please, wear the mask. Compassion looks good on you.
Years ago, I went through earthquake disaster training at work. I was designated a point person for our floor of the building, and therefore given a sticker for my ID that read, “Essential Personnel”. A friend of mine, upon seeing this, quipped, “Does that mean they dig you out first?”
Three months ago I would have never imagined getting a rush from finding a bag of flour tucked way back on a store shelf.
We now have a new measuring stick by which to judge what is “essential” to our lives. Clearly it’s not the trendy shoes or sporting events that we think we can’t live without. It’s the doctors and nurses that we take for granted, mail carriers and Amazon delivery people that we gripe about when our package is late, grocery store clerks and restaurant cashiers to whom we don’t give the time of day They are the blessings in our lives.
These days, leftovers are perfectly acceptable. The food long ago shoved into the back of the freezer transforms into a delicious dinner. And the unexpected shipment of hand sanitizer at the local warehouse store brings immeasurable joy.
How refreshing to truly appreciate these seemingly little things that we have, right now, in this moment.
Eventually, we’ll emerge on the other side of this. And I hope, in the midst of all the finger pointing and contentious debates, we pause and think about what has transpired. Consider how quickly our realities changed. Consider those who have lost jobs, lost loved ones, lost hope. Consider the people who have dedicated themselves and risked their lives to keep things moving, keep others healthy, keep you fed.
As we resume our busy lives and the din of the city increases again, I hope and pray that we don’t lose this appreciation. Respect and gratitude are not partisan concepts, so we should stop acting as if they are.
I can assure you, I will never take cleaning wipes for granted again.
There are few things more terrifying than the unknown.
I experienced this with my cancer diagnosis, although it would be the same with any catastrophe that significantly alters your life, such as losing a job when you’re already financially strapped. You’re hit with the news and then…everything stops. It doesn’t matter who else is talking or what other information is relayed, because the gravity of the situation stops up your ears and you hear nothing else.
A powerfully negative event throws up a wall that you cannot see around. When the future is undefined, it can take any form. This is a positive and liberating concept when you’re embarking on a new venture — “the sky’s the limit!” But in the case of something that’s painfully life-changing, our minds race to frightening prospects, often culminating in a terrifying extreme that we can’t see our way out of.
This is where you pause and breathe. Get your facts together and see what your options are. Things get easier when the darkness in front of you parts and you see a path to follow. After my cancer diagnosis, it was when I met with the oncologist who explained the possible variations of my condition, what the treatments would be for each, and yes, even what the potential outcomes were.
Sitting there, digesting the information, I finally felt like I had something to hold on to. If the diagnosis was a hulking monolith, smooth and slippery, blocking my way, my doctor’s words gave me handholds with which to climb.
Right then, the future looked more manageable. I still desperately wished that it had been different, but I saw the path through the ordeal and it gave me something to follow as I strode forward.
April 27, 2017 was a Thursday. It was also the day of my first chemo infusion. If you’ve ever gone through chemotherapy, you’ve sat through the full disclosure of all potential side effects. There’s so much that it can be disorienting.
But on that Thursday when my husband and I went to the infusion room, I learned that there was a process. Everything doesn’t hit you at once, you take it in steps as you make your way down the path.
I’m still walking. But at least I’m still walking.