Two Assumptions I Wish Doctors Didn’t Make About Cancer

Cancer can turn you into a stress-ball on its own, thankyouverymuch, but there are things that healthcare workers do that may worsen matters.

While there is always room for improvement in the many subtleties of physician-patient interactions (with subtleties being the operative term here, as anxious patients may be zeroing in on the “feel” of interactions and not just the spoken words), there are two big assumptions that I wish doctors would realize that they’re making:

Eat your vegetables and you won’t get cancer? I wish it were that simple.

The first assumption I’ve experienced has been made by non-oncologist physicians. They seem to be just as likely as the rest of the population to confuse correlations with causations. One doctors had been surprised that I had gotten cancer (hey, join the club) because my lifestyle “should” have been protective. Another told me to get a handle on my anxiety because that could make my cancer worse.

Both physicians, you could argue, were justified in saying what they did, as the messages we are bombarded with suggest that we have some control over our risk for cancer. However, read the fine print and you’ll see that in a great number of cases the risk factors that a cancer patient has don’t differ from those of someone who doesn’t develop cancer. But even doctors miss the fine print…

I brought this up to my oncology team which was quick to point out that as long as we don’t definitively know what causes cancer, we can’t make assumptions about whether or not someone will get the disease. So, yeah.

The other major assumption is one that I’ve gotten from the oncological community, and that is that on some level, most patients with a given cancer have the same health profile. Ironically, this concept is often mixed in with the conflicting assertion that everyone’s cancer experience is different. Granted, when you’ve seen a gazillion cancer patients, similarities emerge, and consciously or not there’s probably a tendency to pigeonhole people. Still it’s frustrating to be treated like I fit into a slot when I really don’t.

Effective communication is a critical part of quality physician-patient interactions.

My own oncologist has realized that, thankfully, but he has done a good job of listening and I do a (*cough cough*) good job of talking. Perhaps a bit too good, since he’s mentioned that it would be best if I scheduled my appointment to be his last of the day, so that we don’t face as many time restrictions. But therein lies my point: oncologists need to ask and patients need to share, otherwise, the patient remains a two-dimensional entity and it’s more likely that assumptions will be made about them.

So if there’s a take-home message from any of this, it’s that good communication is an essential part of effective treatment. This is not an easy feat, as physicians have a limited amount of time with each patient, and patients might not think that a given aspect of their experience is relevant. Believe me, it is, and the more that we talk about this and get into the nitty gritty of it, the easier it will be for everyone involved.

How Mindfulness Helps with Exercise Motivation

Exercise has been an integral and indispensable part of my cancer recovery and my life as a whole. I’ve maintained a personal trainer certification (ACSM-CPT) for over a decade and even though I don’t train professionally, I keep abreast of new research and love a challenging workout.

Still, there are days that even I find myself dreading the session I have planned. For those times, I engage in mental calisthenics and rely on a mindful attitude. If you’re struggling to find motivation to exercise, this may help you too.

Note, motivation is something you generate yourself. It is inside you, but you have to coax it out. Be gentle. Hiring a personal trainer to beat you with a stick when you’re not up to a workout is not going to make you look forward to exercising more. But the following concepts might help:

Consider that a workout is made up of a series of movements.

Stop looking at a workout as a massive monolithic thing. Doing so can be overwhelming and make it more likely that you’ll talk yourself out of it before you even begin. Instead, consider that it’s made up of distinct parts, steps that you take one at a time.

Stay in the moment and keep each movement fresh.

Stay present and focus on the part of the movement that you’re doing at the moment, truly feeling into it. If you’re on a rowing machine, concentrate on each individual stroke making sure that you’re using proper form as you reach, push with your legs, and pull the handle. If you’re lifting weights, focus on where your body is in space, on contracting the muscle as you lift, on exhaling as you do so, keeping your body properly aligned. If your exercise is a brisk walk, be aware of how you’re stepping, pushing forward, swinging your arms. These movements become a meditation in and of themselves.

What matters is the here and now.

Release thoughts of how much longer you have until you’re done. Focus on the stroke, step or rep that you’re taking at this very moment. And then when you’ve completed it, consider the next movement with the same fresh attitude. Just as you would if you were focusing on each breath during meditation.

If you can’t finish your workout, that okay. You can try again tomorrow.

Practice self-care.

Do not force yourself to finish an entire workout if you *really* don’t have the energy to–but that means truly listening to your body’s limitations, not discouraging voices in your head. You are better off making a concerted effort at doing, say, half your distance or only one set per weight lifting exercise and doing it well, instead of making yourself so miserable that you don’t exercise again for another week and a half.

If you’re thinking, “I’m not up to doing the entire workout”, ask yourself, “Well, how much can I do?” and at least start. Consistency is key.

Let go of expectations.

Release preconceived notions of how your workout will go and how tired, miserable or sore you’ve already decided that you will feel. Look at each movement with fresh eyes. Employ a beginner’s mind. Get curious about how everything feels.

While it’s true that you’re exercising your body, your mind has a lot of influence on what will happen. The kind of exercise session you have is up to you. Decide to use your best form, draw on as much energy as you have in the moment, and exercise as much as you have planned. And if you cannot go as long you anticipated and have to stop earlier, let that be okay. No matter how much exercise you do, you are still better off than having done nothing. No one can take that accomplishment away from you.

And tomorrow, experience it anew again.

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.

“The Human Side of Cancer”

I first learned of Dr. Jimmie Holland’s work through her obituary in the New York Times, following her passing on December 24, 2017. As a psychiatrist at Memorial Sloan-Kettering Cancer Center, she was credited with pioneering the field of psycho-oncology, which addresses the stuff that goes on in your noggin while you’re making your way through cancer treatment.

Years ago, Dr. Holland became frustrated by the fact that cancer patients were questioned about how every inch of their bodies felt, but oncologists neglected to ask about the state of their emotions. I’m grateful for her recognition of this fact and I completely agree with her. The psychological experience of cancer is a critically important element in treatment, one that is too easily overlooked by hospitals and physicians in their rush to address physical symptoms.

The late Jimmie Holland, a psychiatrist who happened to be married to an oncologist, understood the many psychological pressures affecting cancer patients.

I highly recommend Dr. Holland’s book, The Human Side of Cancer: Living With Hope, Coping with Uncertainty, which still sits by my bedside even though I finished reading it well over a year ago. While I read it cover-to-cover, it works just as well as a reference text, set up so that you can go to the section most relevant to you.

For me, with a background in psychology, this book was exactly what I was looking for, but certainly psychology degrees are not necessary to utilize what’s on these pages. The book was written for both patients and caregivers, for those undergoing treatment and those on the path of survivorship, dealing with a poor prognosis or experiencing a recurrence. There is information appropriate for all these varied situations and all types of cancers.

The book is divided into 16 chapters, followed by a listing of resources. The chapters are as follows:

  1. What Is the Human Side of Cancer?
  2. The Tyranny of Positive Thinking
  3. The Mind-Body Connections and Cancer
  4. The Diagnosis: “I Could Die of This”
  5. Working Together
  6. Coping
  7. The Human Side of Cancer Treatments
  8. The Human Side of Specific Cancers
  9. All Medicine Doesn’t Come in a Bottle: Psychological Treatment
  10. Alternative and Complementary Therapies
  11. “I’m a Survivor–Now What?”
  12. Staying Healthy
  13. The Goal is Control
  14. The Last Taboo
  15. The Family and Cancer
  16. How Do I Go On?
At some point, I had to stop tagging pages because, honestly, I wanted to tag everything.

I enthusiastically plowed through this book because Dr. Holland was writing exactly about the things I’d been thinking about. Most of the parts that I tagged for future reference were in the center (chapters 7-11), but in its entirety, the book is invaluable. Dr. Holland provided numerous examples of situations that her patients experienced in addition to offering practical advice on a variety of topics. So many sections spoke directly to questions that I’d had, such as, “Did Stress Alter My Immune System and Cause My Cancer?, “Are All These Problems [from treatment] Worth the Long Term Gain?” and “Am I a Cancer Patient or a Cancer Survivor?”, to name several. I was surprised by how many issues that had been bothering me showed up in the pages of this book.

Cancer is never an easy topic, but thoughts about potential outcomes and treatment consequences are the reality that cancer patients live every day. This book addressed everything about that reality, and it was perfect for where my head was at the time I was reading it: having had surgery, chemo and radiation, still undergoing monoclonal antibody infusions. My hair had just begun to grow back in and I was happy that the “worst” of my treatment was over, but I was facing the uncertainty of the future.

I remember reading The Human Side of Cancer and being excited by how relevant the material was to my life, and simultaneously wondering why this wasn’t required reading for anyone receiving a cancer diagnosis. Or every oncologist on the face of this planet.

If you are a cancer survivor, current patient or caring for someone who is, I encourage you to get a copy of this book. You might not realize how much you need it.

Paying a Compliment, the Happiest Transaction

~There are precious things that cost nothing.~

I’m currently taking a class via Coursera.org by Prof. Laurie Santos of Yale entitled, “The Science of Well-Being“, which I expect to cover in more depth in a future post.

The purpose of the class is to present research on happiness, why we don’t have it (the things we think will make us happy, don’t) and how we can get it (what actually makes us happy may be surprising).

Of the many studies that Dr. Santos discusses, one in particular caught my interest. University of Chicago researcher Nicholas Epley investigated the impact that social connections have on our happiness (“Mistakenly seeking solitude“). Briefly, he found that individuals who made even superficial contact with someone else during their commute to work on a train not only felt happier, but the person with whom they struck up a conversation likewise felt happier that day.

Making an effort to bridge the gap between us benefits everyone.

But this can be uncomfortable to do. Quite often, people taking public transport keep to themselves. Even if we know that striking up a conversation might be pleasant – and even increase our happiness – we may feel too self-conscious to engage with a stranger.

This made me think: some of the most rewarding interactions that I’ve had with strangers have consisted of merely eliciting a smile from them. That is a very brief connection with another human that ends up bringing both of us joy.

And the best way to do that? Pay them a compliment. I have been gifted with the most beautiful and sincere smiles from others by complimenting them on something about them that was genuinely laudable, resulting in good feelings that last an unexpectedly long time. Try it and see!

This world needs more diverse people finding common connections with each other.

Furthermore, when you open yourself to finding something to compliment about another person, it is amazing how quickly you can locate it. Your eyes see things more brightly and happily, and that feeling is passed on to your recipient along with your kind words.

Then, if their smiles last long enough for their good mood to positively benefit someone else, perhaps that simple act of a compliment can send a ripple that becomes something so much bigger.

What a lovely gift to the world.

Finding Peace Among the Koi: A Visit to Deer Park Monastery

This past Sunday, July 28, the monks and nuns of Deer Park Monastery (Tu Viện Lộc Uyển) graciously opened their grounds to the public for a Day of Mindfulness. This Buddhist monastery, in Thich Nhat Hanh’s Plum Village Tradition, is nestled in the Escondido highlands, in northeast San Diego County.

My daughter and I were delighted to join in since the monastery is within a reasonable drive from our home. It was going to be a hot day, and I figured that there might not be a big turnout, even though this seemed to be the only Day of Mindfulness offered during the summer months at the monastery.

I couldn’t have been more wrong! Apparently, many were in need of a Day of Mindfulness, and 400 of us showed up.

This was our first trip to Deer Park. Following a welcome with singing, we participated in a walking meditation. My daughter and I were clearly more focused on taking mindful steps and enjoying the beauty of our surroundings instead of exactly where on the grounds we were, and as a result, had trouble locating the small meditation hall where all the first-timers go following the walk. By the time we figured out where it was, the room was already packed with people. We managed to eke out a small space at the very back for ourselves to sit and listen.

I have never sensed such peace and spaciousness in the midst of so many bodies. The monk who spoke was gentle and funny, originally from Sweden, and it was a pleasure to listen to his introduction to the practice of mindfulness.

Following this explanation was a short break, and my daughter and I headed for tea. Cups in hand, we sipped as we sat outside in the shade behind the Tea Room, feasting on the glorious sight of the hilly terrain, serenaded by birds and wind chimes, and cooled by mountain breezes. Not what you would expect on a 90+ degree day during the summer. This felt so peaceful.

Done, we waited for our turn to wash our cups. Dharma sharing was next, but we never made it back to the small meditation hall. I admit I have a weakness for koi, and the lotus pond under the trees called to us.

At the lotus pond, I lost myself and found bliss.

We sat and watched the fish. I had had a difficult week, but those worries had not followed me to the monastery. In fact, all I felt was bliss and a lightness of being. Any thought that might have agitated me sat about six feet away, teetering precipitously on a rock surrounding the pond, ready to lose its balance, plunge into the water and be gulped up by one of the majestic koi. There, I was not bothered by anything. I don’t remember the last time I enjoyed such peace. We sat in silence for an hour and a half, breathing in, breathing out and filling up our senses.

I rarely go into the Southern California sun without my umbrella, and on this Sunday it not only saved my scalp, but also a tiny life.

The only break in the calm was a disturbance at one end of the pond. A bee was furiously treading water, looking like a teeny motorboat driving in circles. I rescued it with the end of my umbrella so it wouldn’t become fish food. The koi, I presumed, were well fed, and the world needs all the honeybees it can get.

I could have kept the fish company for the rest of the day, but lunch was upon us, so we made our way down the dining area (we were finally figuring out where everything was!). Everyone stood quietly in line as the scent of curry wafted through the air.

Four hundred visitors descended (ascended?) upon the monks and nuns diligently preparing our delicious lunch. By the time we got to the food, some platters were empty, but there was still more than enough to put on our plates and enjoy a mindful meal.

A much-needed reminder to slow down.

I had practiced mindful eating before, but this was a novel concept for my accompanying teenager, who often ate paying more attention to her phone than to her plate. We chewed silently and slowly, savoring every bite. The tastes of the curried tofu, rice, steamed carrots and salad were vivid, the colors on our plates glowed brightly. My daughter, halfway done, leaned over and whispered to me, “This is the most delicious salad I’ve ever eaten, and I’m already full!”

Ah, if only we could enjoy such preciously appreciated meals at home! At least I had one convert now.

We waited in line to wash our dishes – the sensation of soapy water followed by a cool water rise was refreshingly pleasant on such a hot day.

Our last stop before departing the monastery grounds was a visit to the bookstore. There were more people than books, and it seemed like the two nuns handling the payment transactions were a bit overwhelmed by everyone’s enthusiasm for making purchases. We indulged in coconut ice cream and visited the donation box before heading home.

Floating Cloud Stupa – we admired it from afar and look forward to visiting it the next time we are on the grounds.

We are looking forward to our next trip to Deer Park Monastery, with a visit to the Floating Cloud Stupa, which we only saw from afar this time. When we return, we won’t get “lost” again, because no matter where we are on the grounds, that’s where we want to be.

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.