Frantic Shanti

A Year and a 1/2 with Tamoxifen: Collateral Damage

For those unfamiliar with the drug tamoxifen, its purpose is to block estradiol receptors in an effort to decrease the chances of developing hormone receptor positive breast cancer. My own tumor had been estrogen and progesterone receptor positive, so tamoxifen is pretty much standard fare for women in my situation.

The trick is, however, to make sure women keep taking the medication, and the side effects may make that a challenge. The current recommendation for pre-menopausal women with hormone receptor positive cancer is ten years of tamoxifen. When I posted after a year of taking tamoxifen, I was experiencing minor side effects but had managed to avoid the worst hot flashes and night sweats that many women complain of. And even the side effects I had I couldn’t completely pin on the drug.

After a year and a half of tamoxifen, the landscape has changed. My estradiol level, which was 36 pg/mL when I started in November 2017, has dropped to 22 pg/mL. I’m still not having a significant problem with body temperature regulation, although this may change with the summer months.

There are, however, other distressing issues that are becoming increasingly problematic:

1. Memory lapses. I’ve written about this in a number of other posts, but it deserves mention again because it’s not getting any better. I struggle with distractability and loss of focus, which compromise my ability to do my current job. There are details that I simply miss, and I have a hard time juggling things in my head. Yes, I write everything down and follow my own advice, but there are days that I want to give up and go home.

Bottom line, even with workarounds, my concentration makes me ineffective at times. That alone could be a deciding factor in how long I will last on this medication, but it’s not the only one.

2. Fatigue. This has become more noticeable and is affecting my workouts. I feel like I’m losing ground on my fitness. While I’m no stranger to working out even when I don’t feel like it, there are days that I feel beat before I begin, and like I’ve been run over by a truck by the time I’m done. Exercise is such a crucial part of recovery and good health — and a very important part of my life — that it seems ridiculous that my treatment should be getting in the way of it!

Detachment from affection feels lonely and isolating.

3. Loss of libido and emotional attachment. This would be easier to take if I were single and living alone, but dealing with this side effect in the context of a relationship is getting progressively more difficult. It is not simply romantic desire that has dwindled; feelings of affection for my husband and children have dulled. I know I love them and feel a strong sense of responsibility for them, but there’s a numbness where there used to be warm emotions. It breaks my heart because I don’t want to feel this way.

4. Depression/mood swings. On the plus side, I know what’s going on and am actively working with my counselor on dealing with these fluctuations, but these are side effects of the drug, so as long as I’m taking it, I feel like I’m trying to bail water out of a sinking boat with a spoon.

5. Argh, again with the hair! After regrowing my hair following chemo, it has been thinning from tamoxifen. This may seem insignificant in the grand scheme of things, but if you’ve ever lost your hair to cancer treatment, you know that it can be a emotional experience. Getting your hair back is a big deal, but thinning hair brings back a sense of helplessness and lack of control.

Notice that the effects above are not readily apparent — even the thinning hair might not be as noticeable to an observer as it is to me. It’s easier to understand visible health-related consequences, but we as a society have a hard time getting our head around (or expressing concern for) the importance and impact that emotional factors have on quality of life. You can’t see my concentration difficulties or depressive mood or grief over numbed affection, but they affect me as strongly as do any physical symptoms.

This is a good place to stop and mention gratitude. The fact that I write this post as a former cancer patient on a maintenance drug to help keep my cancer from re-occurring…that is a privilege. My good fortune is not lost on me, and it is something I think about every single day. We have come a long way in treating my type of breast cancer and I am the beneficiary of those advances.

But there is also an expectation that now that chemo and radiation are done and my scans are clean, I should be “back to normal”. I would like nothing more than that, but I’m not there.

This brings me to a deal I made with myself: I promise to do my utmost to last through five years of tamoxifen. However, years 6-10 remain to be seen. At some point, the scales will tip and quality of life will win out over whatever purported percentage of increased survivorship the full decade of the drug can offer me. This offers me some strength to push on and focus on the present, doing the best I can with what I have.

Portals

The journey back to my hometown included a trip to my alma mater, less than an hour away from my parents’ house. Just like much of the Northeastern US, the school has a lot of history that is reflected in its architecture.

A rather majestic entrance to a library…

Doorways and passages hold a particular interest for me, not only because they can be works of art within themselves but also because they have a symbolism that resonates with me.

A door offers an opportunity to pass through and see what’s on the other side. It may improve our situation or worsen it, but even if it’s the latter, there’s always another door in the not-too-distant future that we can open.

I don’t believe that we ever truly run out of portals to open and thresholds to cross.

Doors can be deceiving. They may look foreboding, but lead to glorious things.

Some doors you want to stand and admire before opening.

And in lieu of a proper door, windows serve as adequate portals in a pinch.

Shinrin-Yoku – Forest Bathing in New England

I had the pleasure of returning to my hometown in the Northeast of the United States for a long-overdue visit. Flying into the airport, the difference between the landscape there and the sparser chaparral of my current home in Southern California was striking. The abundance of greenery in the form of old growth trees reminded me of what I missed so much about living in Connecticut – walking through forests, real forests, and reveling in being surrounded by the lushness of nature, awash with feelings of serenity and renewal.

Accept the invitation to slow down and appreciate the beauty around you.

Shinrin-yoku is a Japanese term that means “forest bathing”, a form of nature therapy or ecotherapy, the benefits of which have been studied extensively beginning in Japan and South Korea, but now being practiced throughout the world. The concept is simple: slowly walk through a forest and experience it with all your senses.

Walking slowly, breathing deeply, there’s so much to experience..

While the practice is uncomplicated, in our busy world it is easy to forget the importance of spending time in nature and truly being present as we do so, connecting with an ancestral part of us that we usually ignore. There is much to be gained by doing so. Taken from the site Shinrin-Yoku.org,

The scientifically-proven benefits of Shinrin-yoku include:

Just as impressive are the results that we are experiencing as we make this part of our regular practice:

A perfect place to sit and enjoy simply being.

I can personally attest to this. Simply being in the presence of the trees, walking down a forest path under a majestic green canopy, listening to the wind in the leaves and songs of birds, it is unlike anything that I have experienced in the urban hustle-and-bustle of the Southern California lifestyle. Even in the higher elevations, I do not find what I found during my trip home.

While I cannot easily return to that experience several thousands of miles away, I can make an effort to find the “green” in my everyday life, to pause, reflect on and appreciate the nature around me. And taking a deep breath, I am calm.

“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.

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.

Sleep, the Ultimate Good

I hold sleep as one of the most critical elements of self-care in our lives. Get enough sleep and the whole world looks brighter. But ignore the call of the mattress and dire consequences await.

This is especially true for me, as I slog through the ever-changing side effects of my current anti-cancer therapy (Tamoxifen). The amount and quality of sleep I get sets the tone of my day and determines my resilience to work and life stress. In addition, sufficient sleep has a significant positive effect on my cognitive functioning, which took a hit from cancer treatment.

But this is not limited to my personal experience. The more we learn about the science of sleep, the more we understand how our electronics-driven lifestyles disrupt sleep patterns and affect us as a society.

Dr. Matt Walker (UC Berkeley) is a strong proponent of sleep, and for good reason. He outlines in his TED talk (19:19) below some of the latest research on the repercussions of not getting enough shut-eye, and it’s not pretty. As a cancer survivor, I find this information particularly sobering. While I’ve written about the downside of placing superhuman expectations on ourselves, having THIS kind of superpower, getting sufficient sleep, is literally life-preserving.

Let’s start with “testicles”…

Dr. Walker’s two main suggestions for good sleep? (14:16 in the video)
1) Keeping a regular sleep schedule, retiring and rising at the same time regardless of day of the week.
2) Keeping your bedroom temperature at about 65°F (no mean feat without A/C in the summer months!).

For many of us, improving the amount and quality of our sleep will take concerted planning and possibly sacrifices. We live in a 24-hour-a-day world and sometimes we try to keep up with that ’round-the-clock pace; ultimately, however, we pay the price for it. There should be no question that sleep is critical to our well-being and it’s time that we give it the priority that it deserves.

Why Do We Demand Superhumans?

“…and a shoutout to Sharon in Accounting for submitting her financial report on time from her hospital bed, even with spotty WiFi. Way to show that losing both arms in a car accident doesn’t mean you can’t type with your nose! Everyone else, what’s your excuse?”

We in the US seem to take particular pride in demonstrating our inability to maintain a sane balance in our lives, viewing those who don’t exhibit an indomitable will as not trying hard enough.

Persevering in the face of adversity is laudable. But then, is experiencing difficulty doing so a weakness? Or just confirmation that we can be vulnerable and have limitations, and that’s perfectly acceptable?

It’s not always possible to rise to the occasion. Cancer patients experience this. They are told to “be strong, you can beat this!” “Never give up!” They are supposed to be warriors with limitless energy for the fight.

Lemme tell ya, sometimes you don’t feel like a fighter. Sometimes all you can do is just show up, and that’s a victory.

But there’s always that one person who manages a quasi-superhuman feat while undergoing a particularly grueling treatment. We’ve all heard about their inspiring story because they’ve been held up as a shining example of what can be accomplished even in the darkest of times and most difficult of situations. So if they can do it and you can’t, what’s wrong with you?

Maybe there’s nothing wrong, maybe it just means that the most important thing in your life is to focus inwardly on your healing in whatever way you need to. Why should relentless productivity overshadow self-care?

Every being has limits, and where exactly they lie will vary between individuals and depend upon their circumstances. Not having the energy to push on where someone else did does not make you a lazy or unmotivated or selfish person. It just means that, yep, you’re still human.

A wise man once said to me, “There is no special place in heaven for people who don’t take care of themselves.” It’s time to stop acting like there is — so go home and get some rest.

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.

Cancer’s No Big Deal…Except That It Is

You’d think that by now, over a year since finishing most of my breast cancer treatment, I would drop the subject and get on with things. But, no, cancer isn’t like that — and apparently, neither am I. Just when I think I’ve moved on, something else comes up. So here goes:

Breast cancer has had me see-sawing between two states of mind.

On the one hand, when I was going through treatment, I didn’t want people to feel uneasy talking to me (because they do!). I downplayed the cancer diagnosis and tried to be as matter-of-fact as possible, all with a pleasant smile and carefree shrug. Yeah, surgery-chemo-radiation, no biggie. My focus was on mitigating their uncomfortable reactions — in my mind, they were the ones needing the comforting and support.

That’s because telling someone I had cancer often made them squirm. They didn’t know the “right” thing to say, afraid of hurting or upsetting me, even though the reality was that what was inside my head was far worse than anything they could have said. So I always tried to crack a joke about my bald scalp or discolored nails as if to tell them I’m cool with it.

This extended into post-treatment life. Since I feel a little distance between the disease and me, I don’t always remember that I can catch people off guard when I talk about cancer. People still blush and stumble on words, looking like they want to change the subject. I always try to make it no big deal.

But on the other hand, the reality is that cancer is serious. Treatment can be all sorts of horrible and there are no guarantees about anything. Everyone who’s had breast cancer has to live with the uncertainty of its return. And with the large number of women who have experienced or are still wading through different stages of treatment, there’s a lot of suffering going on.

I know, I know, I know. Things will be fine.

Except when they’re not.

And so, I struggle with people telling me not to focus on the past. Obviously, that would be helpful. But it’s not easy, because even when treatment is over, the fear remains. Cancer strode in like an arrogant rake, dragged me around the block a few times and left an indelible mark on my psyche. My health is back and I’ve regained a lot of physical strength, but there’s that niggling fear that cancer will return and take it all again, and the emotional pain associated with that potentiality stifles any celebration. It was easier to focus on getting through chemo and radiation than to wander into the Wild West of the future.

So I fight with myself. Sometimes I need to talk about how miserable it was and how angry it made me (one side of the seesaw), all the while not wanting to make people uncomfortable about it (the other side). That, of course, is not a successful combination. Ultimately, I put on a brave face, take a deep breath and quietly hurt inside.

But don’t worry, after I write about it, I can shake off these feelings and I’m okay.

Except when I’m not.

A Loss…and a Laugh

I lost my Costco card today. Somewhere between the entrance and the check-out line. It’s not the end of the world since I was promptly issued a new one, but the old one had a photo of the pre-cancer me on it.

Reminders of that “old me” are disappearing as I redefine who I am. Yes, life is constantly in flux and change is inevitable but I’d be lying if I said it doesn’t hurt.

Cancer has been about loss for me. Loss of weight, loss of hair, loss of concentration, loss of physical fitness, loss of over a year spent in treatment. Loss of a friend to the disease. Out of nowhere, losing that one seemingly insignificant warehouse card brought this all back.

There have been gains too, and much to be grateful for. I could draw up a long list. But today I can’t write about them.

Today I longed for what was gone. Tomorrow will be better.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

The clouds parted, the sun shone forth and nothing really changed but my attitude.

So, after all that angsty serious talk, I got home and realized that my old Costco card was in my back pocket all this time. D’oh! I’d forgotten that I’d stuck it there!

Wow, I felt silly. They say hindsight is 20/20…well, looking back at how darkly I’d taken this, it did seem a bit ridiculous that I’d packed so much meaning into a piece of plastic.

And in a swoosh, the clouds cleared out, the sun peeked through and the world looked different. I still have that new post-cancer photo on my Costco card, but I’m laughing at myself and it doesn’t seem that bad.

Same situation, new perspective.

And then, if we realize that we can change our perspective…?

Stepping Off and Slowing Down

During a recent mindfulness retreat, we did a walking meditation outside.

The idea was simple: walk slowly, as if taking steps for the very first time. Sense how it feels to shift all your weight onto one foot as you lift the other, then extend that lifted leg, place that foot down and shift weight onto it as you lift the other leg. Rarely do we slow down enough and realize how complex a movement that is, we’ve been doing it for so long.

As I walked along the paved path, I moved fluidly. There was nothing in my way and the pavement was flat. Perfect to move me along even though I was taking extra care with my steps.

But as I came up to the lawn and stepped off the path onto the grass, I sensed a change in my movement. The lawn was bumpier, clover blossoms all around with honeybees that I wanted to avoid. My steps slowed even more as I trod gingerly.

The living, growing lawn required more balance and called for increased attention to what I was doing.

Ah, those man-made paths…getting us to where we need to be.

As I made my way through this walking meditation, I was intrigued by how my experience differed between the two surfaces. Our human-constructed paths are designed to get us places and purposefully point us in the direction that we must go. The hard pavement requires less thought about balance and it is usually clear of hidden obstructions. As a result, we pay less attention to what we’re doing in the moment and more to replaying scenes from the past or what’s to come in the future. We whiz through, perhaps arriving at our destination with little memory of how we got there.

Once in a while, get off the path, enjoy the journey and see where you end up.

But the grassy blanket laid down by nature gently commands us to observe the journey. That path has many possibilities and sometimes we don’t know exactly how we will travel when we set out. We give it more thought as we progress, perhaps changing direction several times, but being aware of the reasons for doing so. We may arrive at our destination with a fresh mind and greater appreciation of the journey.

Certainly, we cannot always leave the paved path. We have responsibilities that must be met and those may require efficient travel in the shortest time possible. But what a shame if we never take the opportunity to wander off and slow down our pace, delighting in where we are right now.