I AM STRONG that means Sometimes I get frightened and that’s okay Sometimes I feel vulnerable and that’s okay Sometimes I cry and that’s okay Because although the past feels heavy and the future is unsure I am here NOW And today feels like a DEEP BREATH
Some of the recurring themes in my conversations with my oncologist have been that there’s so much we still don’t know about cancer and that the truth will likely be much more complex than we realize.
The recommendations offered as ways to reduce the risk of cancer should not be misconstrued as sure ways of preventing the disease. Thinking we can prevent something gives us a sense of security, which is what we crave. With cancer, we don’t yet have a clear view of how the processes that initiate a DNA mutation translate into our everyday world behaviors or environmental influences, if they even do. What we know is mostly correlational, which means that there seems to be a connection between two things, that they occur together. But that does not mean that one causes the other.
Consider this example: the growth of grass that comes in spring is correlated with the appearance of robins searching for worms. But it would be incorrect to say that the appearance of robins causes the grass to grow. That’s confusing correlation with causation.
In the case of cancer, we don’t have significant causal information when it comes to providing guidelines to humans about what to do and what not to do to prevent the disease. We can offer suggestions, although as in the case of the robins, we can be way off in terms of the way that one thing might affect the other.
Perhaps most unsettling is that as humans, we’re used to being the top predator. What we don’t have as protection inherently (claws, fur, huge teeth), we can use our big brains to manufacture. Cancer, however, still exerts its dominance over us.
We are trying, of course, and learning more all the time. Witness how far we’ve come with treatments, and how we’ve affected the survival rates. That’s a significant and positive step – as a breast cancer survivor, I can attest to that.
But not being able to effectively address the cause means that the treatments, as effective as they may be, take a huge toll on the patient both physically and psychologically. Many of us struggle in recovering from treatments that are considered highly effective, while others succumb to either the disease or the treatment itself.
So as the Breast Cancer Awareness Month of October comes to a close, it’s a good time to celebrate all the positives associated with our medical advances, but also keep an open heart for those who continue to suffer from any type of cancer.
And many of those do not have the benefit of being highlighted in pink.
I try to avoid “stream-of-consciousness”posts, but occasionally I’ll let one through.This one stings a bit…
I am tired. Physical fatigue is easy for me; getting emotionally wrung out is exhausting.
Events that have taken place over the past several years have demanded a release of expectations, a relinquishing of normality, how I think life “should” be.
Cancer was the big one. I used to wake in the morning, hoping that my diagnosis had been a bad dream. That I could laugh and shake my head, thinking, “Phew! Glad THAT wasn’t real!” And then go about my day, forgetting the fear and immersing myself in blissfully boring everyday life.
But that’s not what happened. I would wake in the pre-dawn hours after sleep had left me to the darkness, coldness spreading through my belly as I remembered that I had cancer. And in the midst of the fear of dying was that wrenching feeling of having to let go of wanting things to be different. Still desperately holding on when it was too late to do so.
Attachment leads to suffering. I know this, but I cling nonetheless, stubbornly refusing to accept change.
I was given a bit of news several days ago, too disorienting for me to even define in this post. Like cancer, it caught me off guard, and I cling to wanting things to be different. To be “normal” and uninteresting. I’m compelled by my need to fix it, make it comfortable and easy to accept.
Yet another thing I wish I could control. But I can only paw at it from the outside.
Now I’m engaging in emotional calisthenics, to try to find a notch on this slick surface that I can stick my finger into and get some sort of grip.
I wish this wasn’t the case. I’m disappointed that I feel the way I do. I tell myself, I should be more tolerant of what happens. But it’s the hope that things will stay the same that makes change so difficult.
I twist my thoughts into origami, trying to find a comfortable shape. It takes a lot of massaging to smooth out the edges and make this morsel easier to swallow. Every time I mull it over, it cuts me again.
At some point it is no longer the matter itself that causes pain. It’s all the emotion layered on top of it.
So I’m tired. Letting go, yes, but so slowly. You’d think that it would get easier with practice but even the process hurts.
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:
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 doctor had been surprised that I had gotten cancer (hey, join the club) because my lifestyle “should” have been protective.
This physician, you could argue, was justified in saying what he 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.
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.
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.
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.
“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.
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?
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.