(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.

Releasing Stress Bubbles

I’m constantly working to keep anxiety under control. For me, one of the most common feelings associated with stress is that of it being “in your face”. There is no buffer and therefore no easy way to give yourself time to pause. Emotions rush at you.

I’ve developed visualizations to give me some space. I’ve already written about getting perspective and keeping anxiety at arm’s length, but sometimes I need another way of freeing myself from stressful thoughts. So I use bubbles!

Oooo, bubbles!

When I get caught up in thoughts of a stressful situation and I feel like the images are right in front of me, I imagine pulling back from the scene. What is transpiring before me continues, but I slowly move away, and as I do, the periphery of my vision starts bending inward. As I pull back, I realize that I am inside a bubble with finite edges.

I keep moving backwards through the wall of the bubble until I’m standing outside it. The actions within are still taking place, but they’re no longer coming at me. I watch from a safe distance, feeling secure.

I may allow the bubble to float away or I can pop it if I choose. Or I may stay with it for a while, observing without getting drawn back in.

Sometimes this becomes a game, particularly if I wake in the middle of the night and find myself in the grip of fearful thoughts. It’s usually not enough for me to back out of one bubble. There may be many. Sometimes I leave a bubble and then realize that I’m standing in another, even bigger one.

When my mind is particularly active, the bubbles keep coming.

But eventually, I get to the point where I am standing outside of all the bubbles, watching them floating before me, the figures or events looking small and not menacing at all. That is the perspective that I need to create myself breathing space.

The metaphor of a bubble is a lovely one because bubbles by themselves are playful, beautiful and, of course, ephemeral. Just as the bubble does not last forever, the events in our lives, no matter how stressful, don’t last forever either. The bubble reminds me that all things pass.

I’ve even brought a little container of soapy water with a bubble wand to work. Blowing bubbles (when no one’s looking) in my office slows my breathing and requires some focus. A controlled exhalation is needed to not pop the prismatic ball of soap-water before I can send it on its way, taking my worries along with it.

A stressful event taking place inside a bubble seems less frightening.

When I cannot do this indoors, I may take a break and head outside, letting the bubbles float off into the breeze. I might make someone else smile in the the process and that gladdens my heart.

It’s silly and fun and reminds me not to take everything so seriously. And if I can send my cares off in bubbles, giving me even a temporary reprieve from anxiety, then perhaps what might have seemed like an overwhelming crisis may feel more manageable.

“Fly the Friendly Skies”?

What if the skies aren’t guaranteed to be friendly?

While I’ve not been a nervous flyer in the past, I’ve haven’t flown since 2005 (!) and I’m starting to feel unsettled about our upcoming trip. It’s going to be a cross-continental red-eye during which I’ll be Tetris-ing myself into a plane seat (I’m 5’11”) and trying to sleep upright. Then there’s that plane change in the wee hours of the morning, at a time when any sane person would be fast asleep.

After writing a post on the importance of sleep, I’m going to go against my own advice and really screw up my family’s sleep cycle. So there’s that. But I’m also feeling prickly about making it through security, finding storage room in the overhead compartments, making our connection on time, picking up the rental car and remembering how to get to my parents’ home on a few hours’ sleep.

Oh yeah, and hoping that the plane doesn’t drop from the sky. That’s a biggie.

Life: enjoy the flight.

For a cancer patient, plane flight is one of those things you’re supposed to avoid. While I’m well past “patient” stage, my white blood cell count remains abnormally low, so breathing recycled air in cramped quarters is a bit of a concern. Taking Tamoxifen brings with it a risk of deep vein thrombosis, which is associated with long plane rides, and I’ve been warned about breast cancer survivors developing lymphedema due to the changes in air pressure during airflight.

Okay, okay, okay, realistically none of that will cause me problems. And all those other worries about the trip? They only matter if I’m thinking about them. When I’m not thinking about them, they don’t exist (*crossing fingers*).

Of course, the risk remains. I can sleep calmly on the flight with 99.99% confidence that we’ll get to where we need to go without mishaps, but there is that 0.01% that hangs in the back of my mind. Whether or not I give it attention depends on me. My life is not going to be any better if I’m fretting about it.

Cancer is the same way. There is no guarantee that I’ll stay cancer-free and I have to live with the possibility of recurrence for the rest of my life. That is disconcerting, particularly to a card-carrying worrier like me, but when I detach from that and simply appreciate where I am, I find that my days are a lot brighter. So for both air travel and life, the best course of action is to sit back, relax and just enjoy the flight.

Pulling Back for a Broader View

The World Is Too Much with Us

The world is too much with us; late and soon,
Getting and spending we lay waste our powers;
Little we see in Nature that is ours;
We have given our hearts away, a sordid boon!
This Sea that bares her bosom to the moon,
The winds that will be howling at all hours,
And are up-gathered now like sleeping flowers,
For this, for everything, we are out of tune;
It moves us not. –Great God! I’d rather be
A Pagan suckled in a creed outworn;
So might I, standing on this pleasant lea,
Have glimpses that would make me less forlorn;
Have sight of Proteus rising from the sea;
Or hear old Triton blow his wreathèd horn.

William Wordsworth

At times, the manufactured world feels like it’s closing in on me. Admittedly, that’s not what Wordsworth meant when he wrote his famous sonnet, although his poem, written to protest the spiritual collateral of the Industrial Revolution, is sharply appropriate for describing our current relationship with Nature and how we’re mucking it up.

But I’m going to sidestep that for a second and draw a different parallel. Because as I get drawn into day-to-day worries, when I wallow through the weeds of common stressors, I miss the overall beauty of this Earth and the fact that I get to walk on it.

My anxieties seem all-encompassing and fill my field of view, although the reality is that I’m just a speck. That’s not to minimize the significance of what I’m feeling while I’m feeling it and how it affects me, but once in a while I need some perspective. When I pull back to take a wider view of things (say, like from the height of the International Space Station!), things look different.

It’s so much quieter up here. I think I’ll stay for a bit.

Away from the noisy hum of machines and the incessant jabbering of humans, Earth seems pretty peaceful and quiet, which I never get in a large city. There’s always some whirring or buzzing here, traffic on the street and planes overhead. Not even earplugs provide complete relief.

In the same way, there’s a lot of chatter in my head. It gets so overwhelming at times so I need to apply “mental earplugs”: a grounded seat, darkness, lengthened breaths.

Suddenly, I’m no longer dragged by the runaway freight train crashing about in the space between my ears. For a moment, on a small cushion, those things that seemed important float away in imaginary bubbles and, if only for a moment, everything is still.

Keeping Anxiety at Arm’s Length

These are the most difficult mental calisthenics I’ve ever done.

The most frightening part of anxiety for me is that when scary, intrusive thoughts hit, they are right in my face. It feels as though there is no buffer zone so they come at me fast. I am highly reactive — nausea, cold bowels, rapid breathing, sweating, buzzing head. No opportunity to pause and consider a response. I am thrown into “flight” mode.

I don’t get panic attacks the way others have described them: heart beating so hard it feels like it’ll burst out of your chest, or hyperventilation to the point of getting lightheaded, even passing out. But I still feel anxiety intensely and physically.

So my practice lately has involved allowing stressful thoughts into my line of sight, but softening them, so that they appear blurred and more distant.

I establish this by immediately focusing on my body sensations as soon as I’m aware of the physical sensations of anxiety. That means feeling down to where my skin touches my clothing and focusing on the sensation of pressure on my seat and feet (if sitting) or the entire length of my back (if lying down).

Once my attention in on my body, I revisit the stressful thought, but as if squinting with my “inner eyes”, sometimes looking at it from the side instead of head on. I acknowledge its presence, but fuzz out the details, and most importantly, I keep it at a distance from me so that I have some space. Then I bring in deep breaths, slowing them down and allowing them to calm me as much as possible.

This is not even remotely easy. On some level, I’m still reacting to the thought and do experience a fear of bringing it closer to me. But the soothing nature of the breath helps temper my reaction. I think of this as exposure therapy, a form of cognitive behavioral therapy, except where everything takes place inside my head.

Establishing the breath as a self-soothing “anchor” takes time and consistency in practice.

Lately, I’ve been having more success with this, particularly when I wake in the middle of the night, which is one of the most frightening times for me to experience runaway anxiety. This self-comfort would not be possible without established meditation and relaxation techniques — I’ve used the breath to soothe myself through cancer diagnosis and treatment, but the great majority of my meditation practice takes place when I am not stressed.

That fact, along with consistency in practice, has been critically important to me. In order for the breath to serve as an effective anchor, it must be recognized as one. And that means building up “anchor-like” peaceful associations over time so that the link is not easily broken.

None of this is a quick fix. But as with many things that are not quick fixes, the process of achieving success is part of the success itself. And that is a very reassuring thought.

Between the Past and Future: A Cancer Survivor’s Perspective

I attended a workshop on cancer and stress given by the social workers at my cancer center. Since I like to take advantage of every opportunity to explore what’s going on inside my noggin I was looking forward to the presentation, but I didn’t realize that I would be offered a curious vantage point at the same time.

Sitting in the front row as I always do, I was joined by a woman who was awaiting the results of her second breast tumor biopsy; her first had confirmed cancer but another tumor was discovered shortly thereafter.

She told me about her racing thoughts, lack of appetite, inability to sleep — all those symptoms of intense stress that I also experienced as I awaited diagnosis. How odd it was to revisit this through her, now that I had a comfortable seat on the other side of that experience.

I commiserated with her, briefly offering up my own experience, and assured her that some of the anxiety would mellow once she had a definitive diagnosis and accompanying treatment plan. That’s the only thing I assured her of, knowing the nature of cancer, but I hope it gave her comfort seeing how far I’d already made it on the cancer journey.

And then, ironically, I realized that the woman sitting directly behind me was someone I had sat next to during one of my chemo infusions in 2017. I re-introduced myself, and while she didn’t remember me, she said she’d been through so many chemo sessions that it was hard to differentiate one from the other.

When I met her in 2017, she had hair and a good dose of energy. We talked about our kids (hers were grown) among other things. She was being treated for lung cancer but we didn’t dwell on the particulars. That’s not generally what you talk about during chemo. You gravitate towards non-cancer topics.

Things don’t always turn out the way we predict they will.

But now, she wore a ball cap to cover her bare head and walked with a cane. She seemed frail and was accompanied by a caregiver — several years of cancer treatment, not to mention the cancer itself, will do that to you. I’m not sure what her prognosis was, but given what I knew about her and the fact that she was still doing chemo, it probably wasn’t favorable.

There I sat, trying to stay present, next to my past and in front of my potential future. I had the good fortune of surviving the one and a decent chance of escaping the other.

There is no crystal ball with which we can gauge the future, deciding whether or not we like it, and if not, opting out. So here’s to making the best of the time that we have.

Who Let That Monkey into the Courthouse?

My right heel has been hurting — for the past week I contemplated
claiming plantar fasciitis to get out of jury duty.

Okay, I knew that excuse wouldn’t fly, but I was stressed about getting pulled out of everyday life, with an already overfull plate, to do my civic duty. The more I thought about it, the more I worked myself up into a lather.

Mindfulness couldn’t cut through the noise in my sleep-deprived head. This agony of anticipation made several things crystal clear:

My nemesis. This monkey will pull your lungs out through your nose.
  1. I ruminate enough to rival a massive herd of cows. Hello, monkey mind! I’d been thrashing through all the unknowns, unfettered irritation and unfounded fears in my head. This was the monkey-on-my-back, screeching madly.
  2. My physiological reaction to even the anticipation of potential stress is out of control. Granted, this reaction was lubricated by a hefty pint of caffeinated coffee from the courthouse cafe. But when the voice over the loudspeaker called out names in alphabetical order, my heart pounded as the list approached where my name would be. I knew what was happening and that it was ridiculous, but simply couldn’t stop.
  3. Instead of patiently waiting to see what happens, I really really really want things to be a certain way. I punished myself by clinging too tightly to expectations. I mean, tight enough to turn my knuckles white (knucklehead that I am).

All of this opened the door to a boatload of suffering. Great. So much for being mindful. My morning as a prospective juror was fraught with anxiety.

Even after several years of daily meditation and mindfulness bells and “take 5” reminders, even after trying to be all zen about it, I was still a mess. Disappointing, by my judging eyes. But also, very human.

Things didn’t improve until I started pacing at the back of the jury lounge briskly enough to feel conspicuous. The motion soothed me, like rocking a baby. It was self care, which is the first casualty of my anxiety.

It was the only mindful thing that I could manage, but it kept the monkey busy as we zigged and zagged around other people to avoid a collision.

Once I racked up a good 3000 steps and a bunch of odd stares (don’t care, don’t care, don’t care), the pressure released a bit. Okay, that and the fact that I’d made it through the first two rounds of juror calls without hearing my name and it was already time for lunch. That combo was like the “pffft” from a fizzy bottle of kombucha. I was feeling better.

I returned from a long lunch break with my reasoning mind in charge, calculating probabilities. Three sections of seats, fifteen rows each, a minimum of three people per row…not counting the folks at random round tables and working on laptops along the walls…hey, that’s a LOT! Safety in numbers! The odds were in my favor, otherwise known as, “if your group is being chased by a hungry leopard, don’t worry about outrunning the cat, just outrun your friends.”

You mean, NONE of this stuff is real???

So the reasoning mind wrestled the crazy monkey mind into a half nelson. But alas, the reasoning mind was still a slave to expectation, with its own monkey-on-the-back. It was a tenuous peace, unstable and easily shattered by the voice over the loudspeaker, but it enabled me to approach the situation with less reactivity even if temporarily.

Guess how this messy day ended: a thousand deaths later (around 2pm, to be exact) the voice from the loudspeaker released us from service, giving me a year’s reprieve and kicking the monkey to the curb. And it was at that moment that I realized how tightly worry had gripped me, and it wasn’t even real. Everything had taken place in the space between my ears.

I thought about how my agony had been self-generated. And that’s a topic for another post.