“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.

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.

A Mini-Guide to Surviving Chemo Brain; or, “Wait, what were we talking about?”

While it’s not my intention to write advice columns for breast cancer patients, because I posted ‘getting through chemo‘ tips, I might as well follow up with what I’ve learned about handling the memory and focus issues associated with chemo brain.

Note, first, that chemo brain may not be all chemo. There may be various factors involved (chemo, tamoxifen, onset of menopause, even the tumor itself) and it’s difficult to tease out which one is the main culprit. Be that as it may, it still sucks when you’re standing in your closet, wondering why you went in there…for the tenth time today.

I put a lot of blame for this lack of focus and fleeting short-term memory on the estrogen-blocking drug tamoxifen, which is given to women with hormone receptor positive tumors. I can’t tell you how many physicians have assured me that it’s a “great drug” for decreasing risk of tumor recurrence. And an equally large number of women who have told me that their lives improved after they got off it.

Regardless, for now chemo brain is a fact of my life, so in the spirit of accepting what I cannot change, here are my best practices for making sure that chemo brain doesn’t get me fired from my job:

At least I know it’s there…
  • Write down your thoughts. And do it immediately. I’ve actually lost thoughts as I was scrounging for a writing utensil. If I have to remember something, I put it in writing, often on a sticky-note that goes on my computer monitor or bathroom mirror. Some place that I look at multiple times a day. I do this to excess, with notes everywhere, but it works. It also decreases my stress levels because I know the thought has been recorded.
  • If you can’t write it down, repetez! Repeat it in your head. Sounds obvious and overly simplistic? Perhaps, but you only need to do this until you either no longer need the thought, or get to a place where you can jot down a note. Of course, I ruined the last part of a meditation retreat for myself because a load of great post topics popped into my head and I had no place to record them. On the bright side, I realized I could juggle seven items in my head for a half hour if I concentrated on them!
  • Narrate what you’re doing. I’ve had to resort to this, especially when working on a multi-step process where accuracy counts. Yes, I’ve made mistakes on the “I-must-be-smoking-crack” scale, and this is often one of the best ways to avoid that. When I hear myself say what I’m supposed to be doing, I stay on task and am less likely to wander off.
  • Avoid distractions. This is probably the most critical piece of advice I can offer. Distractions are death to my thoughts because I go down rabbit holes before I’m even aware of what happened. The Google page of my Firefox browser at work suggests articles to read based on my browsing history, and let me tell ya, there are few feelings worse than suddenly realizing that you are lost deep in an article on body language when you should have been finishing up a report that’s due in a hour. How’d that happen? Anything that breaks my concentration — even a tickle of a distraction — can sidetrack me for minutes before I come to my senses.

Bottom line is, stay present. If there were one general rule of thumb to preserve your functioning while in the grips of chemo brain, that would be it.

The above hints may seem obvious, but I went through a lot of frustration until I accepted that my brain had changed and it couldn’t be ‘business as usual’ anymore. Once I started working around my limitations, things got a lot easier.

Getting Through Chemo

My previous post was about the side effects that I experienced from my first chemotherapy infusion for breast cancer. However, side effects are specific to the individual and depend on a variety of factors. My greatest concern was that someone about to embark on chemotherapy would read about my experience and immediately assume that it would be theirs, also.

So I’m aiming this post directly at newly-diagnosed breast cancer patients, in an effort to provide helpful (I hope!) suggestions for getting through cancer and chemotherapy. The below is not supposed to be an exhaustive list — rather it contains random things to consider (in no particular order):

You’ve got this.
  1. You can get through this. And I don’t mean that in a “rah-rah” way like a well-meaning friend who makes it their personal crusade to make sure you “think positive” for a positive outcome. That’s BS. But please know that there are medications and suggestions available to manage chemo symptoms, with a lot of advances made in the last decades, and you should make use of all of them. Ask your oncologist.
  2. Take it step-by-step. If there’s one thing that a cancer diagnosis is, it’s overwhelming. Once you get past the initial shock, there may be more diagnositics to run and a host of treatment options to consider. You don’t have to take on everything at once. Sit down. Breathe. Clear your head.
  3. Know your sources. Everyone and their cousin may have some miraculous piece of advice that they claim helped someone. Great for them. Everyone’s situation is different, so stick with reliable sources. This will generally be your healthcare providers, but if you feel you need to, get a second opinion. Or a third one. It’s your right because it’s your health. And tread gingerly through the internet!
  4. Everyone’s situation is different, as mentioned in the point above. It’s worth repeating, again and again. As a matter of fact, a number of us have made this our mantra. I have suffered more from the fear of going through what someone else did than I actually did from the thing itself. That says a lot. You have a right to your own experience so feel free to protect it.
  5. Stay informed. Once you get reliable sources, keep on top of information related to your condition. Too stressed or tired? Ask a close friend or relative, or in the absence of those, make use of the nurses at your cancer center. There is a push in medicine today to fully support the patient, and that includes providing information.
  6. Ask for/accept help. If someone offers to clean your kitchen or prepare a meal, take them up on it. I had a mom offer to pick my son up from school on the days after my chemo and it made a huge difference! Talk to your healthcare provider about getting assistance at home if you don’t have anyone to help you.
  7. You didn’t do anything to deserve this. Let me be the first to absolve you of responsibility. People do not purposefully bring cancer onto themselves, nor do we know enough about what causes most cancers to make you liable for your disease. Someone suggesting that? You have my permission to kick them in the teeth. (Just kidding! Don’t do that; save your energy for recovery.)
  8. Prepare your area. A bedside table with all the things you’ll need to ride out chemo side effects at the ready will make things easier. I used a chair without a cushion to keep necessary medications and a glass of flat ginger ale on hand.
  9. Set your boundaries. You may not want visitors/advice/your aunt’s casserole and that’s okay. If you have a partner or friend to act as a gatekeeper, perfect, but if not, feel free to pull the cancer card and ask people to leave you alone, guilt-free.
  10. Make use of freebies. Ask your nurses about organizations or individuals who offer services at low or no cost to cancer patients. I was told of a salon that provided free head-shaving, wigs and scarves and scarf tying lessons, and of an aesthetician who gave free facials. There is a program called “Look Good, Feel Better” that provides high-end makeup and application tutorials, including helpful things like drawing on eyebrows. See what’s available in your area.
  11. Distract yourself. And do so with pleasant things, whether it’s watching rented movies, taking a drawing class, going for a walk. Be mindful as you’re doing so, truly enjoying each moment. Your cancer center may have various activities available for cancer patients.
  12. Breathe. I know I said this before, but it’s worth repeating. Breathe.

I’ll see you on the other end of treatment!