Balancing Side Effects vs. Quality of Life

“Remember that your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects.”

I can’t tell you how many times I’ve read that statement on the informational leaflets from various bottles prescribed for me. When it comes to a disease like cancer, it might as well say, “You think these side effects are bad? Hohoho, just try not taking your meds!”

This does not give warm, fuzzy feelings of hope. Then again, there’s not much about cancer that’s warm and fuzzy.

It can feel like the treatment is as bad as the disease.

I, admittedly, am generally accepting of the advice given by knowledgeable professionals. When my oncologist laid out a treatment plan, I didn’t argue, although when offered a choice between an effective targeted therapy versus an even more effective but also more toxic one, I opted for lower toxicity.

For me, it was a quality of life issue. If I’m “cured” of cancer but end up with severe heart problems…well, I’d rather take my chances with a less damaging option.

Cancer still remains life-threatening, now as it did decades ago. The difference is that patients are living longer and some go completely into remission. Survivorship should be considered a factor when designing a treatment plan, as should long-lasting repercussions of side effects.

So if I had one request of oncological health teams, it would be that they look beyond simply bombarding the cancer and consider the physical and mental condition in which they leave the patient, being sensitive to the possibility of ‘overtreatment’ in their exuberance to squash as much of the disease as possible.

Should you use a sledgehammer when a rubber mallet might be sufficient? Is “just to be sure” a justification for side effects than can compromise your quality of life, however long that is?

It’s not always easy to find that sweet spot between acceptable risk and tolerable side effects.

There is no “right” answer to this as everyone’s situation and risk tolerances are different. So if I could have a second request of the medical community, family and friends of the patient, it would be that they respect the limits and decisions of the one who’s going through this.

To be able to weigh the risks and decide what’s acceptable and where to draw the line — that might offer at least a semblance of control in the crazy roller-coaster ride that is cancer.

Permission to Let Go

My mind is usually abuzz with thoughts about what I have to do, what happened in the past and what the future may bring. Imaginary conversations take up space in my head, dragging me down down rabbit holes. All that unnecessary mental activity can get exhausting.

Meditation offers a reminder that I don’t have to do that.

I recently attended another mindfulness retreat. It had been a stressful week with many worries. As I took my seat, thoughts swirled in my head about everything that had been going on. It felt like I was juggling plates over my head, trying to keep everything in the air. I was tensing without even realizing.

Whoa, buddy, how about giving it a rest?

And then it hit me like a bolt from the heavens: I could choose to let go of it all. There was nothing that I had to do and nowhere to be, except sit in stillness exactly where I was.

We practiced mindful movement. I have a habit of challenging myself by trying to make poses more difficult to make my muscles work harder, and I’ve found myself doing this even during retreats.

But this time, I let go of striving and took a simpler route. No need to set personal records, hold the pose longer or deeper; I wasn’t competing against anyone.

I didn’t need to do every movement perfectly, I needed to mellow out. It took more than a few breaths to bring myself down and feel the ground beneath me.

Sometimes I need a reminder that I can simply choose to stop the noise.

Not worrying about who was watching, what they thought about me or how I looked — what a concept. I gave myself permission to set all those pressures aside, and for the first time that week, everything calmed down.

Obviously, this is not something I do enough of. If I forget that I can simply let go during a formal mindfulness practice in a supportive community setting, then it’s not surprising that I tie myself up in knots during everyday life.

And everyday life is what really matters.

I’m still not good at this. But maybe each time I stop myself, I do so just a bit earlier. With time, I will get closer and closer to stopping before I even start. And that’s something I can look forward to.

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.

I’m not forgetting how lucky I am.

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 close up of one of the library doors.

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.

What’s on the other side?

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

Here’s an invitation to enter…
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.

“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.

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.

It’s okay to be just human.

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.