(Almost) Two Years on Tamoxifen: A Change in Plans

This weekend would have marked two years of taking tamoxifen, the estradiol-blocking medication that is supposed to keep my hormone-positive breast cancer from recurring.

As it turns out, there will be no such commemoration. Several weeks ago, I started noticing a funny cramping feeling in the general area of my uterus. It was light and under any other circumstances, I would have ignored it, but use of tamoxifen is associated with an increased risk of endometrial/uterine cancer, so it kept me on edge.

It’s worth noting that the increased risk is actually for postmenopausal women, and to the best of my knowledge, I was not yet postmenopausal. That’s why pre- and perimenopausal women are started on tamoxifen but taken off of it as soon as they go through menopause. Still the sensation, although intermittent, didn’t go away.

I finally called my oncologist. As it was, I was wary of tamoxifen – I already blamed it for a number of other negative things that I experienced: fatigue, hair thinning, low libido, cognitive issues, mood swings, general misery…all of those and more were listed as possible side effects.

I complained about the light cramping to an oncological nurse, who was surprised that I didn’t have a recent pap smear on record, because according to her, the oncologist wanted me to have one yearly. Mind you, pap smears are for cervical cancer, and I wasn’t at an increased risk for that. But whatever. The nurse gave me her blessing to stay off tamoxifen until I next saw the oncologist.

Conveniently, my oncologist appointment was in three days.

I was stressed, because if there’s one thing that being a cancer survivor made me good at, it was stressing. So much so, that my blood pressure hit 165/95 at my appointment. I couldn’t get over how ridiculous that was and how my thoughts had generated that sort of a reaction. I don’t think my pressure was even that high before my cancer surgery, at a time when my anxiety was raging and everything felt out of control.

I had a prolonged discussion (negotiation?) with my oncologist. In the end, we decided the following: I could take a month off tamoxifen and meet with him again in six weeks. In the meantime, I would go to my gynecologist to rule out endometrial cancer. (Incidentally, a week later at the gynecologist’s office my blood pressure was back down to a very reasonable 102/64.)

No more tamoxifen? Yeah, I feel like celebrating.

My oncologist and my clinical counselor (who I discovered had spoken to him about me) thought that some of the worst side effects that I was experiencing were not due to tamoxifen, but anxiety. My onc suggested that if nothing improved after a month off tamoxifen, I should consider anti-anxiety meds.

But he also checked my hormone levels to see where I was in my journey into menopause. A few days later, I got the news: I was officially postmenopausal and was told to not restart tamoxifen.

So, okay, no more tamoxifen. I was also quite happy that I managed to transition through menopause without any significant hot flashes. The downside of this was, however, that I would be put on an aromatase inhibitor, which came with its own set of side effects, not the least of which was significant bone pain and bone density loss.

Or at least those were some of the effects that I remembered from the last time that I read about them, which was a while ago. This time, I’ve decided, I won’t go back and research all the negatives of the medication. Anxiety does hit me hard, I have to admit, and I want to be sure that I’m really experiencing what I’m experiencing and not simply being influenced by what I’ve read.

So I’ll give the new medication a fair shake and give myself a break by not getting worked up by what *might* happen. As the gynecologist said, looking over my bloodwork, “Actually, you’re really healthy, except for having had breast cancer.” I’m going to go with that and see where it takes me.

What Do We Really Know About Cancer?

Some of the recurring themes in my conversations with my oncologist have been that there’s so much we still don’t know about cancer and that the truth will likely be much more complex than we realize.

The recommendations offered as ways to reduce the risk of cancer should not be misconstrued as sure ways of preventing the disease. Thinking we can prevent something gives us a sense of security, which is what we crave. With cancer, we don’t yet have a clear view of how the processes that initiate a DNA mutation translate into our everyday world behaviors or environmental influences, if they even do. What we know is mostly correlational, which means that there seems to be a connection between two things, that they occur together. But that does not mean that one causes the other.

Consider this example: the growth of grass that comes in spring is correlated with the appearance of robins searching for worms. But it would be incorrect to say that the appearance of robins causes the grass to grow. That’s confusing correlation with causation.

In the case of cancer, we don’t have significant causal information when it comes to providing guidelines to humans about what to do and what not to do to prevent the disease. We can offer suggestions, although as in the case of the robins, we can be way off in terms of the way that one thing might affect the other.

Perhaps most unsettling is that as humans, we’re used to being the top predator. What we don’t have as protection inherently (claws, fur, huge teeth), we can use our big brains to manufacture. Cancer, however, still exerts its dominance over us.

We are trying, of course, and learning more all the time. Witness how far we’ve come with treatments, and how we’ve affected the survival rates. That’s a significant and positive step – as a breast cancer survivor, I can attest to that.

But not being able to effectively address the cause means that the treatments, as effective as they may be, take a huge toll on the patient both physically and psychologically. Many of us struggle in recovering from treatments that are considered highly effective, while others succumb to either the disease or the treatment itself.

So as the Breast Cancer Awareness Month of October comes to a close, it’s a good time to celebrate all the positives associated with our medical advances, but also keep an open heart for those who continue to suffer from any type of cancer.

And many of those do not have the benefit of being highlighted in pink.

Falling Back Asleep: Nighttime Relief

As calm as I may be during the waking hours, nightfall poses a unique challenge. How many of us have struggled in the darkness, surrounded by those scary thoughts that we thought we had dealt with during the day?

The darkness seems to make us more vulnerable to flying thought-gremlins. They creep in at night when our brains can’t reason them away. I’ve fought those little buggers for much of my life and they’ve been responsible for many hours of lost sleep. It wasn’t until I got serious about meditation that I developed means of protecting myself against them.

These are my best recommendations for returning to dreamland:

Drop into your bed. After waking to Dementor-esque anxieties circling you, realize that they’re flying, ephemeral creatures. And if you’re up there with them, it’s time to come back to Earth and settle into your bed. That is where you really are and you are safe. Focus on how it feels to have your body contact the bed, how the bedclothes feel against your skin. Rustle the sheets and listen to the sound. Take three deep breaths and listen to the exhales. You’re not “up there” with the swirling thoughts. You’re down here where it’s calm.

At times when there’s too much noise in my head, I will put a soothing voice in there from a meditation app like Calm, Plum Village or Insight Timer. Sometimes a guided meditation is enough to quiet the negative clamor.

Practicing stress release during the day will make it easier to do the same at night.

To support nighttime attempts at falling asleep, establish a sense of calm during the day. Practice being present — as opposed to chasing thoughts down rabbit holes. Pay attention to your reaction to various stimuli. Take conscious breaths, meditate, and use whatever tools work for you.

For instance, I have associated certain images with a calm state and I use them as anchors during the day (e.g., setting up a safe space). I have them pinned up by my bed and at work so that as I work to release stress I look at them, and as I look at them I release stress. The more I do this, the more powerful the association. I draw upon those images and feelings at times when things seem out of control. Practice during the day and you will have more peace at night.

Appreciate the nighttime wakening. Odd as it may seem, this can be a positive opportunity. Each such interruption allows you the chance to ground yourself and learn how to gently drop off to sleep. Stressing about being awake does you no favors and only adds to your wakefulness.

This doesn’t mean that there aren’t bad or frightening things actually happening in your life — sometimes there are and they can be very serious. I struggled with this when I got my cancer diagnosis. But at that moment in the middle of the night, lying in your bed, you have a temporary reprieve. Your only responsibility then and there is to go back to sleep. There’s nothing on fire.

Unless there really IS a fire, in which case, RUN. But most of the time, it’s just our fiery thoughts. And we can learn to douse those flames.

This will take practice – it’s not a one-time pill. But once you have done this enough times, you’ll find that not only is the relief wonderful, so is the knowledge that you are capable of determining how you react to things. That provides a satisfying sense of strength and a peaceful sense of control over what may seem like an out-of-control situation.

“Dropping Down”: A Meditation Analogy

One of my greatest obstacles to meditation is distraction. I’m particularly susceptible to having my mind wander off because of the drug tamoxifen that I’m taking for breast cancer, the side effects of which include difficulty with concentration and focus.

A wandering mind, however, is not limited to those with cancer medication side effects. If you meditate, you’re pretty much guaranteed to struggle with focus at some point. I use the analogy of a cave to describe what this feels like and how to deal with it.

I sit in a darkened cave, warm and comforting, the only light coming from a hole far up above, where the noisy world buzzes. There’s nothing wrong with that, but right now is the time to devote to my meditation cushion. I focus on my breath. As I sit, a thought emerges and I notice a rope hanging down from above. Before I realize it, I’ve grabbed hold of it and start climbing.

These thought-ropes are so tempting to grab onto, pulling us up and away from the meditation cushion.

The further I climb, the easier it is and the louder the world gets. My surroundings brighten, but I’m no longer meditating. I’m actively engaged in what’s going on up above, perhaps agitated, perhaps excited. I’ve lost track of my breath.

“Drop down,” I tell myself gently. And I slide down the rope, into the welcoming darkness below, until I find my place back on my cushion in this womb of Earth. One deep breath and I’m grounded again, calm and rooted.

I can’t stop what’s going on in the world above, but I can choose whether or not to climb a rope.

This experience repeats itself, like a flowing dance between the meditative breath and wandering attention. Another thought catches me and I reach for its rope, making my way back up swiftly.

“Drop down,” I tell myself again patiently. I let go and return to my place in the cave, surrounded by the supportive darkness. Another deep breath and I’m calm again.

So many thoughts, so many tempting opportunities to climb out of my cave too soon. Some days, I swing from rope to rope, only hovering over my cushion, never quite managing to ground myself. On other days, it’s easier and the path to a peaceful meditation session is straightforward. The darkness of the cave soothes me and reminds me that I am safe, and that I can choose whether or not to cling to a thought.

My distraction is a constant, but that doesn’t matter as long as I can drop back down. And I can always drop back down.

Making Peace with Street Noise

Is it possible to re-imagine annoying city noises?

At the least, living in an urban area with a high level of noise pollution is annoying. At worst, being subjected to car alarms and emergency vehicle sirens at any time of the day and night is very jarring and stressful. And I’m speaking from personal experience here, as following our last move, we ended up with a bedroom overlooking a very busy Southern California street.

The stretch of road outside our apartment unit is one of those that give cars enough distance between traffic lights to really accelerate as they blast by. It also leads to one of the major hospitals in the area (hello, ambulance traffic), and this being a big city with big city issues, there’s no shortage of opportunities for the police to be called out, sirens blaring.

There are many days that I wish I weren’t where I am. But wishing doesn’t change anything.

Drawing on mindfulness helps, however, and this is how:

Re-interpreting noise as different sound elements turns an “idiot street racer” into a thunder-like rumble. Much less annoying.

Much of the stress I experience from these various car noises is due in part because I know what they mean. I know that the sounds are the constant stream of cars going down the street or a high-pitched siren wail. But what if I were to accept that I’m living in a noisy city and to define the street noises as simply various sounds?

What if I were to break down the sounds into their characteristics? Would it be easier to handle the noise if I stopped judging and explored each sound as if I were hearing it for the first time?

This is far more doable than one might imagine. Yes, alarms and loud tail pipes are decidedly unpleasant, but they don’t punctuate my soundscape nearly as frequently as do the regular cars driving by. The cars speed through with whooshes of different pitches depending on the vehicle and how quickly it passes.

Sounds of passing cars transform into soothing waves – with the occasional jarring reminder that things are not entirely pleasant.

These sounds rise up and pass away like waves on the ocean – in fact, that whoosh can be soothing, just like the sounds of the ocean can lull you to sleep. Even noisier cars and motorcycles take on a rumbling quality, like thunder. Allowing oneself to re-interpret these sounds, to let go of annoyance, makes even the more jarring noises easier to handle.

When you can’t run away from the noise, make space for it, invite it in and accept that this is what’s happening now. Inevitably, it will pass, to be replaced by another noise and another opportunity to re-imagine it.

Sanctuary: Creating A Safe Space

There have been times when things in my life have gotten intense and I feel the walls closing in on me (cancer, I’m looking at you). Those are the times that I need to back off and give myself space to breathe. Being a very visual person, one of the methods I’ve employed is finding an image and associating a calm mind with it.

This becomes my safe space. Whether you prefer to call it your “calm space”, “sacred space” or even the oft-ridiculed “happy place”, the idea is the same. Find the visual elements that you find soothing and comforting — perhaps a place in nature, a place from your past where you felt safe, even a fantasy land that you create for the purpose. Real, imaginary, familiar or visited only in your mind, it doesn’t matter. What matters is that it resonates with you.

When I did this most recently, in the preparatory phase for Eye Movement Desensitization and Reprocessing (EMDR) therapy sessions to help with anxiety that I’d never been able to shake, I made a new Pinterest account to collect images.

I highly recommend this for anyone going through stressful times. We all need a buffer between ourselves and this hectic, unpredictable life, and this is one way to do that. Collecting and pinning these images is relaxing in itself!

I have always been drawn to natural settings with lots of greenery, so I searched for elements such as gardens, greenhouses, water, hanging vines, flowers and fish. This is a place created exclusively for me.

As if from another time, this space offers vines, a beautiful pool, elegant architecture and the feeling of a hideaway. https://www.pinterest.com/pin/701998660650066569/

It is is easy to find many images that capture the feeling I’m after: a sense of closeness and security in a place of natural beauty, where I can be alone (unless I chose to let someone else in), a space impenetrable from the outside.

There’s nothing quite like watching koi to bring peace to your day: https://www.pinterest.com/pin/701998660650161590/

The sound of running water is luxuriously soothing, and the vibrant color of koi brightens everything. The above image may have been at the side of a house, but in my mind, it could be a hidden corner that only I can access.

A beautiful path, lined with flowers, that gives the feeling of being tucked away in an elegant and exclusive setting. https://www.pinterest.com/pin/701998660650067012/

Not all spaces have to be confined, as this vine-covered path above illustrates. It provides room to wander and breathe deeply while still feeling secluded.

This could be the magical entrance to your fantasy space: https://www.pinterest.com/pin/701998660650254229/

Your calm space can be made up of different images that show different elements of it. Each space needs a portal through which you enter, so why not make it magical?

It might be enough to have a safe area from which you can look out onto the world, but still feel secure in a colorful, fragrant setting: https://www.pinterest.com/pin/701998660650066950/

Once I had gathered a variety of images that evoked the feeling of grounding and peace that I sought, it was time to name it: one word (or phrase) that enables me to conjure up my calm space. I settled on Halcyon, but realized later that it didn’t give me what I needed (I’m picky about words and their meanings). Then I came up with Elysium, as it suggested an other-worldly place in the heavens.

I thought that name fit perfectly. Except that as we continued in the preparation phase for EMDR, I had a hard time maintaining focus on one particular image. I had chosen so many! So I thought about what I really needed.

It was breathing space. A place to pause when things come at me too quickly. Ironically, after pinning so many glorious images on Pinterest, I returned to a photo that has served as the background for my two monitors at work. When I arrive in the morning and log in, this image grounds me and I find myself taking a very deep breath, like a sigh:

THIS is my sanctuary.

This image speaks to me. It combines nature with a sense of spaciousness, yet feels secluded enough to impart a feeling of security. And my name for it? Sanctuary. So simple and to the point, and yet encompassing so many different emotions and meanings for me.

The next step has been feeling into the sensations that this calm space evokes. What does that feel like in my body? And then holding onto that feeling, saying the name, imagining the setting. You can “charge” the image with meaning in this way ( à la Pavlov).

The associations that are formed in the process create a sense of calm that I can draw upon to center and ground myself during periods of high stress. It’s not a pill to end all woes, but it can be a powerful tool for dropping yourself down into a more peaceful state. I encourage you to give it a try.