“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.

Invisible Effects: Anxiety

This is tough to write.

One of the reasons this blog is currently anonymous is that there are topics I want to cover without the fear of being judged. As many strides as have been made in dealing with mental health issues, there still remains a stigma associated with things going on in your headspace.

If there’s one thing that cancer did, for better or for worse, is force me to face the fact that I have a problem with anxiety. I’ve often wondered how different my cancer experience would have been, had I been able to go through all of this without the uncontrollable fear. I expect that I would have been less angry, less nauseated, less desperate. I’m sure that other people experience anxiety with their diagnosis too; mine devoured me.

Cool, calm, collected…and so not me.

This deserves a description: if asked to describe myself as a dog breed, I would like to say that I’m a Great Dane or a Mastiff (hopefully less drooly), watching the world coolly, not getting too excited about anything. But that’s not who I am. I’m a Chihuahua — but not a nasty, bitey, snarly guy with a Napoleon complex. I’m one of those pathetic little dogs that just sits there and trembles with a paw raised. I get anxious, and how. But in the past, the bouts of anxiety always passed rather quickly, perhaps in a matter of hours or, at worst, a day or two. My mind would work through it, and that would ease the tension. That’s why I’ve always been able to handle it.

But going through cancer blew that to pieces. When I experience anxiety now, it hits me like a freight train. The effects are immediate: a cold punch to my gut followed by nausea and weakness. When I focus on being mindful and present, I can slow my breathing and heartrate but I cannot get rid of the nausea, so I can’t shed the overall feeling.

This sensation is horrible. Meditation works wonders, but I cannot yet make enough space for my anxiety to be able to step back and observe it. It’s in my face, and that’s terrifying, but not necessarily apparent to those around me. It’s a dirty little secret that has affected my quality of life.

That can be harder to deal with than cancer. And I can’t believe that I let myself write that. But apparently, I’m not the only one who feels that way.¬†Dr.¬†Stephen Ilardi, Associate Professor of Psychology at the University of Kansas with a private practice in Clinical Psychology, teaches a Calm Master Class called “Rethinking Depression” (Calm.com) in which he describes the experience of a former cancer patient who battled Hodgkin’s lymphoma. While undergoing particularly difficult cancer treatment, the patient was visibly ill and suffering but received an enormous amount of support from those around him, and that helped him through the disease.

Several years after he recovered from his cancer, the young man experienced a bout of serious clinical depression, but he didn’t “look sick” the way he had from the lymphoma. As a result few people around him understood the level of psychological pain he endured, and he received little support.

After his depression finally lifted, the patient declared that if he had to chose between once again going through the cancer or experiencing depression, he would take the cancer even though its treatment was pure physical torment. 

That speaks volumes regarding not only the agony of psychological distress but also how critically important it is to take it seriously. Mental health issues deserve more attention, and even though we’ve come a long way in understanding their impact, we need to do better. In the context of cancer, I feel it’s imperative to address the psychological repercussions of the disease, in addition to the life-threatening physical ones.

Which is why I’m writing. I can’t help but think how much worse this would be if I wasn’t actively engaged in coping techniques.

Treating the Whole Patient

Falling ill in the 1960s, my grandmother was never told by her doctors that she had pancreatic cancer. That seemed to be a fairly common tact when the outcome was bleak: there was no question the end was coming once you got a diagnosis, so why stress the patient even more? 

And survivorship? What was that? Surviving was a long shot and anyone who did make it through was told to be happy that they were still alive. Lingering side effects were considered a small price to pay. But with the advent of more effective treatments, the population of survivors has grown significantly. These days, there is a future for cancer patients, and with that a growing need to address the distresses that may plague former patients for many years to come. 

There are the physical repercussions that we often hear about, such as neuropathy, lymphedema and heart troubles. But more attention needs to be paid to what goes on in the space between patients’ ears. The psychological effects of cancer diagnosis and treatment can be just as, if not more, debilitating and long-lasting. 

It’s the pain no one else sees that hurts the most.

I am fortunate to live in an area of the United States with exceptional medical care and several highly reputable cancer centers. However, I’m even luckier that the particular hospital system my family is part of has gone to great lengths to make sure that they treat the whole patient, offering outstanding psychological support at the cancer center. Not only are there support groups and a variety of classes, but there are exceptional clinical counselors available to deal specifically with mental health issues associated with cancer. Based on what I’ve been told by patients at other facilities, such an enhanced level of emotional support is a rarity.

This is disappointing. We have finally chipped away at the stigma surrounding cancer and have improved the survival rate, but we have much more to do to support patients and survivors in treating the emotional effects of the disease.