“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.
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.
With everything that’s going on right now, it would not be surprising if you were having trouble sleeping.
I myself have an internal alarm that wakes me up around 3am, giving frightening thoughts a chance to land hard punches. It’s far easier to keep negative emotions at bay during the daylight hours, but our defenses are down when we’re groggy. Before I know it, I’m already on that hamster wheel, getting nowhere and working up an anxious sweat in the process.
There’s a lot to worry about in the time of COVID-19. Take your pick of stressors: finances, physical health, relationships, emotions. At night, our brain wants to fix everything that we’re hit with during the day, but obviously, that’s not the time for it. Few things are as critical for dealing with stress as a good night’s sleep, which you won’t get if you’re trying to calculate how many months’-worth of rent you have left.
The mistake we make is trying to let go of things completely. When “danger is imminent”, as in, the worst-case scenario is a distinct possibility, it’s unrealistic to pretend it’s not. I promise you, as a former cancer patient, I had terrors breathing down my neck. I could not simply “let go” of them. They were life-changing and oh-so real. But with a little effort I could loosen their grip on me.
Your concerns need some respect. So instead of trying to avoid them, try gently putting them aside. You know they’re still there, they know they’re still there, but you’re not butting heads. This may take some mental calisthenics.
Ask yourself, “Can I do anything productive right now?” If the answer is no (hint: unless the house is on fire or there’s a tiger loose in your bedroom, the answer is no), then create a mental shelf for your anxious thoughts. You can build one for yourself, right there lying in bed, no hammering required.
Find yourself a jar with a secure lid. I know you have one somewhere in your mind. Scoop your thoughts in there, screw the lid on tightly and place the imaginary jar on that imaginary shelf. This may take several tries — unpleasant thoughts are slippery — but that’s okay. Make sure the shelf is across the room from you. The jar will still be there in the morning when you wake, thoughts swirling inside. But in the darkness, you’ll have some space between them and yourself.
As you lie in your bed, take a deep breath, feel the weight of your body on your mattress, feel the softness of your sheets on your skin. Look at the shelf, way over there. Way, way over there, and you safe in your bed. Allow yourself to relax.
That’s what you need most in the wee hours of the morning. So rest easy now. Tackle the problems tomorrow.