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.

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.

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.

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.