“If you want a happy ending, that depends, of course, on where you stop your story.”
Orson Welles director, actor and producer
Honestly, this blog is supposed to be funny, but sometimes it’s hard to get there.
I am a cancer survivor. You cannot imagine how good it feels to write that. This blog was established to help me document my journey, process my experiences and, ultimately, inch away from thinking of myself as a cancer patient and towards being a mindful, peaceful and accepting (that’s a tough one!) creature on this Earth. Be warned, some of my posts are self-indulgent and unnecessarily wordy; I have much respect for anyone willing to slog through them.
Right now, this blog is anonymous: I need to stumble through my feelings, complain when I feel like it and be blunt when necessary — and I need a safe space to do it without fear of judgmental glances. While my goal is to keep this light-hearted, I realize that I have the pleasure of being a survivor and chuckling about my cancer experience; there are many who are not granted that opportunity. Writing this blog is a privilege.
Cancer sucks. It’s an indiscriminate spectre that has haunted the lives of practically everyone at some point, whether relatives, friends or ourselves. For me, cancer cannot pass into faded memory quickly enough, but at the same time, I am infernally curious about the disease and how it has changed me.
So here are my facts:
In early 2017, I was diagnosed with triple-positive (estrogen+, progesterone+ and HER2+) breast cancer. The lump was 1.6cm in diameter, removed at the end of March, along with three sentinel lymph nodes that were revealed to be unaffected. Chemotherapy (Taxotere & carboplatin) started a month later and lasted the entire summer, 6 hefty courses, one every three weeks; adjuvant therapy (Herceptin, a monoclonal antibody) also started at this time, but went for 17 courses, ending in April 2018. Daily radiation treatment lasted six weeks through autumn of 2017. A 3-D mammogram in February 2018 showed nothing, in a good way. That marked my first year without the tumor.
I wish I’d been able to write in 2017, but my head wasn’t there. I was not processing, I was existing and enduring. After my final Herceptin infusion, my port was removed and I turned around to see what had happened. It took several months of writing before I tossed out my first post in September 2018, privately at first, and then, “Hello, world!”
It’s going to be a bumpy, unpolished ride. Bear with me.
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.
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:
What Is the Human Side of Cancer?
The Tyranny of Positive Thinking
The Mind-Body Connections and Cancer
The Diagnosis: “I Could Die of This”
The Human Side of Cancer Treatments
The Human Side of Specific Cancers
All Medicine Doesn’t Come in a Bottle: Psychological Treatment
Alternative and Complementary Therapies
“I’m a Survivor–Now What?”
The Goal is Control
The Last Taboo
The Family and Cancer
How Do I Go On?
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.
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.
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!
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.
Although I don’t do so often, I can still knock out a proper cartwheel.
Since it’s a “wheel”, you only need a lot of space moving forward, not width-wise, so presumably, it should be possible to cartwheel down a hallway. After all, gymnasts manage this on a balance bean only a few inches wide.
But that’s not what happens to me. Even when there’s physically an ample amount of space for gymnastic endeavors, psychologically there is a perceived narrowness.
That lack of space exists only inside my head, but it’s powerful enough to hinder even an attempt at a cartwheel in our apartment.
I imagine limbs thwacking against walls coupled with lots of pain and regret.
This post, of course, is not about cartwheels. It’s that I often approach life events in a similar way. There is a narrowness of view and fear of pain, and these limitations take up real estate inside my head. While in reality, there’s enough space for emotions to express themselves and enough time to work out any arisen problems, those imagined walls confine my actions.
Were I to close my eyes and trust my abilities, cartwheeling through the little hallway from my galley kitchen to our dining area would be no big deal.
But faith in myself has been eroded away and my sight is influenced by not only things that came before but also the discomfort of what may come in the future.
Breaking through these barriers takes work, and while I’m up for it, it is a process. The trick, of course, is to generate enough confidence to cartwheel down that hallway while I still remember how.
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.
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.
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.
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.
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.
This is not the post I was originally going to write.
I was going to relate the feelings of loss that I’ve experienced. And if I feel them, cancer sufferers who are in worse situations are hit with a tenfold intensity.
However, I decided against that. As I noted earlier, attitude influences our perceptions of a situation. That’s certainly not earthshaking news, but the extent to which that happens constantly smacks me upside the head.
There are bright spots in cancer. My Nurse Navigator, herself a triple-negative breast cancer survivor, would say, “You’re gonna either laugh or cry,” and as patients we do find things to laugh about. It’s just that we want to be the ones to point those things out. Calling yourself Yoda because you have a few long hairs on your head can be done in a light-hearted way. Having your neighbor laugh at your bald pate after a strong gust of wind rips your head scarf off, not so cool.
Sitting down and plunking out a humorous piece used to be really easy. There were so many things in life to laugh about, and it was no sweat to find the funny in everything. But it’s a harder squeeze now with cancer in my rear view mirror.
Not that I want to hide behind doors in Groucho glasses ready to nail people with seltzer water. But being able to generate a little bit of lightness would be appreciated. And when you throw financial stressors, cancer, work pressures and gradually dissipating self-esteem into that environment, pulling out a sincerely funny post seems almost impossible.
This is not how I want to go out, as the grumpy old lady who sits by the window all day, watching the kids in the neighborhood and ratting them out for the smallest infraction. No, I’d rather be the fun old lady who brings out popsicles and water balloons and gets in trouble along with those kids.
Same old lady. Different attitude. Yeah, I can swing that.
Not all of us can do great things. But we can do small things with great love.
Attributed to Mother Theresa
I have disappointed myself.
Thirty years ago, I would have assumed that by now I would be doing great things, making a big difference in the lives of many beings.
I would have been well advanced in my field and a person of consequence.
But life is full of twists and turns and things don’t always go according to plan.
There are obstacles along the way, and maneuvering around them can force you onto a side path. Sometimes that path strays too far from your original purpose and you end up so far away that you cannot make it back.
You may find yourself in a place that’s unfamiliar and unexpected. For me, it was a realization that I will not get to where I thought I was going.
So I cannot make grand decisions to benefit all. But perhaps I can do little things with a kind heart that will benefit someone. I may not change the world, but in a small way with great love I can do my part.
One of the most intense emotions that I felt after being diagnosed with cancer was anger. I felt betrayed by my body and the medical community. I’d done everything that I had been told I was supposed to do to bring my breast cancer risk down to as close to zero as I could, and still cancer found me.
In reality, until we discover what causes cancer, we can never eliminate our risk of the disease. Of course, I wasn’t thinking like that. I had been completely blindsighted (as, I’ve learned, so many are) and was furious about it.
So when I read a suggestion about finding things to be grateful for, I scoffed at it. Until I actually thought about what I could potentially be grateful for.
The result was overwhelming. In the midst of what had gone wrong, there was so much that had gone right! So many things that could have been worse, so many lucky coincidences that improved my situation. So much to be grateful for! Where my way had been obstructed by brambles and thorns, now lay a welcoming path.
I sat slack-jawed, humbled by my many blessings, as if they had been planned out to benefit me. If I had to develop invasive breast cancer, then so many things were working together to make my journey easier.
I kept a gratitude list and continually added to it. Invariably when I sat down to write my mood would gently soften. Even so, I struggled. There was a perpetual tug of war between hot emotions and the soothing breeze of gratitude. Many times the heat would overtake me.
Time has passed and distance offers perspective, and while I am not perfect in making space for all the frustration associated with repercussions of my treatment, I understand the importance of working on it.
Every night, therefore, right before bed, I make a list of five things that I am grateful for. They don’t need to be big and they don’t even need to have taken place that day (although often they have). If they’ve evoked gratitude, they qualify.
I can always find at least five things and that is a heartening thought.
Settling into bed, thoughts of wonderful things fill my head and put a smile on my face, shepherding me to sleep. There is no better way to end the day.