There’s more to the story I began in Part 1 and what better time than the start of a new decade to relate it?
I have a monkey. Those of you aware of your monkey minds know exactly what I mean.
But at this moment, “I have a monkey” means something more tangible. After giving it some thought, after going through struggle after exhausting struggle over all the negative chatter in my head, it was clear that I needed to change my strategy.
A quick Amazon search provided the result I needed: a gloriously soft, appropriately small, unbelievably cute plush monkey that would serve as my previously-maligned nemesis. It is a physical representation of my MonkeyMind (my little MoMi), but not one that I’d want to stay away from. This one begs for soft cuddles.
(To be clear, I bought a stuffed toy from the Amazon site, not an actual primate from the Amazon!)
How can something so darling be a nemesis? It shouldn’t be.
This is not about avoiding thoughts or wrestling my mind into submission, which I’d been trying to do. This is about acceptance of something that is a part of me.
Instead of tossing and turning at night, instead of succumbing to anxiety, instead of frantically trying not-to-think about what’s bothering me, I take that comfy manifestation of my worries and shower it with affection. I hold it gently, and then I hold my thoughts gently too.
The best part of this is that MoMi, a representation of that which upsets me, is actually so easy to hold and love.
What does my MonkeyMind need? The same thing this world needs a lot more of: LOVE.
Not gonna lie, I really did not want to go on yet another medication, but for this appointment, I left all the journal articles at home and put away the boxing gloves. I promised my oncologist that I would stay off the forums, stay off PubMed, quit overthinking things and give letrozole a chance.
The reason? My oncologist thinks that my earlier frustration with tamoxifen was, to put it bluntly, in my head. And my clinical counselor suggested that what I complained of could be explained by anxiety. But I swore that my memory and focus issues started with tamoxifen.
You know what? I’m not so sure now.
The fact is, everything that I was experiencing could have been caused by anxiety (or menopause). And even more striking were the things that I didn’t experience. Not only did I not have significant hot flashes (maybe a “warm flush” here or there, easily countered by taking off a sweater), I never had night sweats. Heck, I had more night sweats before my cancer.
No weight gain, either, which had been another big concern of mine. I’ve been disciplined in maintaining healthy fitness habits throughout my adult life, probably to the point that most people wouldn’t tolerate. Tamoxifen didn’t manage to mess with that, which was extremely gratifying.
While I really want to peg the concentration problems, distractability, flagging libido and other negatives on estrogen-blockers, a retrospective look at my emotional history suggests that (1) I’m highly suggestible (I need to stay off the internet!), (2) there have been loads of anxiety-amplifying events in my life, even before cancer, that I haven’t handled well, and (3) I would be better off shutting up, taking the pill and working on getting my mental state in order.
I mean, I already knew most of this. But some things need to hit me between the eyes a number of times before they actually register.
So, while my oncologist warned me about “a little joint pain” (eek!), I’ve avoided anything but a cursory glance at what I might experience on letrozole, besides what reactions would necessitate calling the doctors.
We’ll see how bad these side effects really are.
A FINAL NOTE – According to what was written on the bottle, this stuff can cause dizziness and impair my ability to operate a vehicle. Seriously? I didn’t expect that, but here’s what I’m going to do with that tidbit of information: I’m going to view letrozole as a reason to get to bed earlier, since I’ll obviously have to take it in the evening. And I’m going to tell myself that this is going to help me sleep. Who knows, maybe it will?
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.)
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.