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Catherine Boulay Foundation Learn About Cancer

The New Abnormal: How a Regular Person Becomes a Doctor

I was normal… once. I went to parties. I ran. I carried on normal conversations, like a normal person. I laughed easily. Then my acceptance to medical school arrived with a 48-hour deadline to accept and 2 weeks to matriculate.

Medical School

Waving in the darkness to my parents, I slowly rolled down the driveway, my momentum stolen by a U-Haul replete with the treasures of a 22-year-old: bedding, some posters, a reading lamp and a stereo with ginormous speakers. It was August 1986. By nightfall, I had driven 12 hours and shook hands on a room in an apartment with my new roommate, an absolute stranger, who felt kindness or perhaps pity toward this homeless student. We unpacked the U-Haul.

The first semester of medical school began post haste. Feeling unworthy, I spent most days and nights with my head in either an anatomy book or a cadaver. My circuit of apartment to class to lab to dinner to library was broken only on weekends, when it became apartment to library. Each book highlighted (blue was my color of choice), then outlined, then condensed, then committed to memory. Throughout the semester, the sky, my travel companion to the library, progressed from brilliant blue daylight to strawberry twilight to inky blackness. I returned the 12 hours to home only at semester’s end, with an honors grade in anatomy, to breathe and to escape the discomfort of daily chest tightness.

Waving in the darkness, my mother tried desperately to gain my attention as I loaded the car in the driveway for a family ski trip. Bags were packed in the trunk and skis on the roof rack when a faint voice pierced the morning stillness.

“Rick,” she hissed in a way that, to this day, still gives me shivers.

“I’m packing the car, Mom. I’ll be in in a minute.”

“Come in now… please. And keep your voice down. You’ll wake the neighbors.”

I approached the front door. “Did you forget anything?” Mom said.

“Don’t think so. It all went in pretty easy.”

“That’s not what I meant. Aren’t you cold?” she whispered, slowly pointing up and down at me.

Apparently, Mom was unimpressed that I would venture outside wearing nothing but long johns in full view of the neighbors. But unlike the classic elementary school nightmare of embarrassment at finding oneself outside dressed only in underwear, the medical school student just replies with a blasé, “Our bodies are just a bunch of pulleys and levers. The real me is hidden somewhere inside. Nobody cares. And if they do, they shouldn’t. It’s just a body.”

Oncology School

“Have you led these conversations before?” asked Nan. She’s the institution’s beloved social worker, with the wisdom of Solomon, the patience of a saint, and the wardrobe of a Broadway diva, harkening back to her primary career.

“Not really. But I’ve heard enough of them,” I responded naively.

“Maybe I’ll come along and we can do this together,” Nan offered.

Gynecologic oncology fellowship, or oncology school as I call it, built on the surgical and medical techniques I learned in residency. The curriculum focused on radical procedures and the intricacies of chemotherapy management. Although I was considered a trainee, this apprenticeship allowed more independent patient treatment. The educational, technical, and research components were highly regulated; the art of medicine, much less so. Helping folks understand and manage their impending death was such an art form.

I had never subscribed to the “It’s time to get your affairs in order” line. It said little and worried everyone. One of my mentors was known for his deliberate and methodical approach to getting this point across. It began as snowflakes, gentle and meek.

“Ya know, ma’am,” he’d confess in a broad Chicago accent. “Things aren’t lookin’ so good.”

The patient generally looked back quizzically.

“I mean there’s a lot of unusual stuff growing in your CAT scan.”

Quizzical look turns to concern.

“Ma’am. Don’t buy the big jars of mayonnaise.”

Look of concern turns to realization. “Oh. I understand.”

And just that quickly, snowflakes blew into a snowstorm. And if the “mayonnaise” line didn’t work, there were plenty of other avalanches to convey the gravity at hand. “You’re in a room with a hungry tiger. You have a shotgun and fired twice. And ma’am, you missed.” Or the endearing, ”You’re in a boat with a leak, so you put a finger in it. But then there’s another leak… and another. Pretty soon you got more leaks than fingers. And ma’am, you’re in a sinking ship.” One cringeworthy metaphor after the next, which surprisingly never offended any patients, who instead seemed relieved to know the truth. But, once again, not my style.

Nan and I stopped back after rounds to visit with Tonya*, a young mother dying of cervical cancer. Tonya, alone in her room, stared through the hospital window, which overlooked a brick exterior wall of an adjacent hospital wing, housing folks who looked back while also pondering life’s unjustness.

I began. “Tonya, did you understand what Dr. Black was saying on rounds today?”

“It was pretty clear,” she began, eyes welling. “I don’t have too much time left.”

“I’m afraid not.” I whispered, gazing downward.

“But what am I supposed to tell my kids? I won’t be there for their birthdays or graduations. Or anything! This is so unfair!”

Thoughts of my children, the same age as Tonya’s, instantaneously projected me into the same terrible situation. I opened my mouth to speak and merely squeaked. But even if I did have a voice, I had no words to utter.

Nan, speaking from wisdom and compassion, jumped in and took control of the conversation. She began to set up a plan to address all of Tonya’s concerns. “Let me get you some paper, right now. We’ll make a list of the important events that you’d like to share. Then we’ll write letters so you can let the kids know exactly what you’d like to say to them at those moments. And if you’re comfortable with the idea, we can make some videos for special days too. We’ll have your husband bring in the camera and I’ll give you a makeover. It’ll be hard, but we’ll help you. We’ll also plan a family meeting with the children and gently let them know how the next few months may go.”

I watched and learned as Nan thwarted mortality with paper and pencil. She was amazing. And walking back to the office after this experience, Nan took my hand and assured me that these conversations would get easier.

Attendinghood

Eager to share her day, my wife launched into a breathtaking and breathless run-on sentence that would make Nathaniel Hawthorne proud. But it was 9:00 PM. I had been operating since 7:00 AM and I was spent.

“I’m sorry, my ears are tired and I’m exhausted. I’ve been operating for 14 hours.”

“Well, the taxes are done, if you could look over that and sign them. And the trash needs to go out, but I can do that,” she responded, miffed to be put off once again. “Dinner is in the fridge.”

“Thanks, but I’m not hungry, I ate lunch at 4:00.”

It was an exhausting day—but also a really interesting one. It began with an 8-hour case of tertiary debulking of recurrent ovarian cancer. I’ve treated Paula* for 7 years now. She functions well despite small-volume disease, now chemo and radiation resistant, which causes her bowel to intermittently obstruct. Surgery began robotically, but after 2 hours getting through adhesions, I opened her up. The next 6 hours saw three small bowel resections and a large bowel resection with a colostomy. All the while, my internal newsfeed read (in Paula’s voice), “I don’t want another stoma. I had one before and it was awful. I don’t want another stoma.” And though I did the right thing for the disease, I wondered if I had done right by my patient.

The next case, a quick robotic hysterectomy for a uterine precancer, lasted less than an hour. I had operated on several members of the patient’s family who had all done well. This case kept the streak going.

The final case of the day came billed as a robotic removal of a pelvic mass. In truth, we performed a hysterectomy on a dude. Born 70 years ago with ambiguous genitalia, Mike*, raised male, developed breasts as a teenager resulting in bilateral mastectomy and testosterone treatment. Now, an old hairy married guy with a pelvic mass on ultrasound, he either had a cancer or a uterus, both difficult to discuss. Fully expecting someone to say the wrong thing, I spent the day alerting the OR staff of Mike’s situation and the appropriate language to use. The case went well: no cancer, only a uterus, resected robotically and then carefully removed through Mike’s belly button. The buzz in the OR suite that day was about this case. Though it was late, I sent him home, as per his request, decreasing the likelihood of anyone making a verbal faux pas.

All in all, a pretty cool day, but HIPAA and exhaustion prevented any discussion of it. My wife went to bed. I fell asleep on the couch.

Medamorphosis

Most of us choose the medical profession for a rewarding career of getting folks through the most difficult days of their lives. A desire to be helpful. A hope to be needed. A need to feel important. However, the individual experiences of this noble endeavor change physicians deeply. Our normal deviates markedly from most. The study of medical sciences quickly dehumanizes, as we discover that life is a series of biochemical reactions and the body, a physical construct subject only to the laws of physics. Clinical medicine reinvigorates our humanism, but similar to other first responders, reinforces that lifetimes play out as a series of dramatic and spectacular events loosely interconnected with humdrum. We just happen to be involved in managing everybody’s furor, so our personal lulls are hijacked. The simple discussion of “How was your day?” falls by the wayside.

We live abnormally.

We are not the life of the party. In fact, if two medical folk meet at a party, they cling to one another like social life preservers. If three gather, then the entire conversation becomes medicine. If I am solo, I describe my work in gory detail to innocent bystanders often resulting in tears on the part of my listeners. I generally leave early, carefully rolling my wet blanket into the trunk for later use.

We leave our loved ones high and dry. “I’ll be home in a half-hour,” means “See you in the morning.” I cannot begin to tell you how many birthday parties—my own birthday parties—I’ve missed, returning late to a quiet house, a slice of cake, empty beer bottles, and some wrapped presents. Our kids remind us of the times we weren’t there for them.

Yet we endure. We know no other life. The career we chose came with a lifestyle, generally left out of the algorithm when we adopted it. Yet, in every career there are tradeoffs. Balances. Life is imperfect. And despite its abnormalcy, the career that chose me suits me quite well. In fact, I love it. I cannot see myself doing anything else. It’s important to me to be important to someone, and it’s a privilege to care for a fellow human being on her worst day. And as for the family, well, they accommodate. I don’t truly believe they fully comprehend my battles. My choices. My eccentricities. But at least they see my patterns, and love me anyway.

As for parties, if we haven’t seen each other since college, better just leave me off the guest list. I’ve changed.

This article was recently published on ASCO Connection.

Catherine Boulay Foundation's Close to Home Video Series

Redefining Cancer: The “New Normal”

New Normal ( /njuː/ /ˈnɔːm(ə)l/ ): A previously unfamiliar or atypical situation that has become standard, usual, or expected.¹

“I never expected this. This whole cancer thing,” continued Jane toward the latter part of her prechemotherapy visit. “One day you’re fine. You’re working and doing your thing, you know? Then you get sick and someone tells you its cancer. It’s shocking! Your whole world turns upside down. Surgery and chemo. Doctors and nurses. I just wanna go back to the way it was before. I just want my old life back.”

Every other American man, and one in three American women will be diagnosed with cancer during his or her lifetime.² These statistics give credence to the impression that so many folks seem to carry a cancer diagnosis, especially in the elderly, where cancer is most common. Presently, over 15 million Americans find themselves classified as survivors.² Each one shocked, stunned and horrified to be considered amongst the ranks. Each one desirous of returning to a former life and lifestyle.

Cancer, defined biologically as an abnormal proliferation of atypical cells, generally involves less than a percent or two of the total body weight. Yet, this tiny biological intruder soon confronts everything we are and everything we hold dear. Bodily changes from the disease itself and subsequent treatment often affirm the stereotypical images that we associate with a cancer diagnosis: fatigue, baldness, surgical scars, pain, stomas, drainage tubes, nausea, mediports and difficulty getting around. Subtler, yet equally vexing, are the social adaptations to our environment: depression, anxiety, fear, interactions with others, workplace issues and expectations of our future. Additionally, spiritual questioning and bargaining with (and occasionally cursing at) God or other higher powers often occurs as folks wrestle with the meaning of their own existence.

Yet despite these intense challenges, survivors endure and often thrive.

So how can this be? How can you successfully navigate these treacherous times? Cancer survivorship requires transformation of the status quo. Cancer survivorship demands a new lifestyle, a new normal. Fortunately, human beings come preequiped with resiliency and creativity and problem solving skills aiding in the transition to the new normal. In fact, many of the changes occur organically and reflexively, without our specific attention paid to it. Surgical scars fade over time. Drainage tubes, wires and mediports are removed when no longer necessary. Medications control nausea and pain. And hair, almost always, sprouts, though often curlier and wilder than before. Some changes remain long-lasting and require adaptation. Bowels may run while limbs limp. And a glimpse in the mirror may no longer jive with the remembrances of our precancer bodies. Though less visible, the psychosocial and spiritual changes can manifest in profound changes in behavior. Time, our most precious commodity and lamented as it slips away in early survivorship, becomes a gift generously shared with those who need it. The depression and anxiety of “Why me?” gives way to “Why not me?” as we discover that we are no different from others along the cancer journey. We quickly learn to live in the “now” and allow the future to remain out of reach, without the ability to control it. And an apparent vengeful God reveals a merciful side. As my wife, a 10-year leukemia survivor, describes herself, “I’ve become a new and improved version of me.”³

The difficult but powerful lessons learned along the cancer journey define the wisdom of cancer survivorship. Each teaching, forged in the flame of adversity, challenges our perceptions of our bodies, our resilience, our courage, our universe and ourselves. Under such stressors, we must change. We must adapt. Everything about us is different. And there is no going back to before. Why would we go back to before, negating these hard earned lessons of survivorship? We’ve established a new normal.

As every survivor experiences cancer and its treatment differently, each transition to the new normal varies. You’d expect those diagnosed with more aggressive cancers and prolonged, toxic treatments to struggle with their new normal. That is often, but not always the case. Likewise, survivors with early stage disease requiring less aggressive interventions may get to their new normal relatively easily. But again, given the profound changes to self identify as a cancer patient, even those with indolent disease may stumble. And although 70 percent of cancer survivors live at least five years after diagnosis², some with very advanced or treatment resistant disease tragically do not live long enough to establish a new normal. While others, cured of their disease, live with significant limitations in quality of life. I stand in awe and admiration of those remarkably resilient individuals, who, in the early part of their cancer journey, utter a sentence that begins, “The blessing of my cancer is that…”

Jane’s comment on wishing to return to the life that she knew before cancer is, as you can imagine, quite common in early survivorship. As an oncologist, I never challenge it. It is real and it is honest. But I often return to the concept later on in the cancer journey, after establishment of the new normal. Answers to simple questions like, “How’s everything going?” cue me in to the survivor’s adaptation. When patients reveal thoughts that are not focused on the self, symptoms or disease I know there has been growth toward the new normal. Topics of grandchildren, hobbies, and work goals brighten my day. But when I hear of advocacy work or spiritual reckoning or a sentence that begins “I never ever thought I’d do this but…” then my heart leaps. I know that profound inner work has accomplished the new normal.

At this moment, my thoughts on Jane’s comment reflect the beauty of the inner growth along the cancer journey. Cancer and its treatment are beastly. Period. It will strip you bare and leave you quaking. But as you recover, you will see the world anew. Platitudes become truths. Gratitude replaces fear. And although your body, mind or spirit will not work as it did prior to your diagnosis, they will be acceptable to you. You will make it so. As for turning the clock backward to the time before the struggle, that will not work. That can not work. For you are no longer the same person. You have been tested and developed the skills of survivorship. You have earned your new normal.

This article was recently published on cure.

(1) Oxforddictionaries.com

(2) American Cancer Society, Cancer Facts and Figures 2018

(3) Close to Home: Cancer Survivorship PBS13 and Catherine Boulay Foundation produced cancer survivorship documentary, 2016

Catherine Boulay Foundation Learn About Cancer

Cancer, Redefined: Survivor

sur•vi•vor (sərˈvīvər/) noun : A person who is able to live their life despite experiencing difficulties.

“I can’t wait to get through my cancer treatment so I can go on living my life. I want to be a survivor,” said my patient with a newly diagnosed ovarian cancer.

You are a survivor, my dear. You already are.

Cancer survivorship begins at diagnosis. The commonly accepted definition of “survivor” within the cancer community is simply a person diagnosed with cancer. So once the terrifying sentence, “I’m so sorry, the biopsy shows that you have cancer,” leaves your doctor’s lips and pierces your soul, you begin life anew as a cancer survivor. And although nothing actually changed, everything changes.

The notion then, that disease outcome (whether you live or die) determines if you are a survivor is therefore erroneous. The accepted definition presupposes no end result of the diagnosis. So if you choose treatment for a curable or controllable cancer or reject therapy for any reason, you remain a survivor until separation of body and spirit. Resultantly, survivors experience their journeys uniquely. Folks enduring harsh surgical, chemotherapeutic or radiation therapies for aggressive disease often feel an increased urgency compared to those offered “watchful waiting” for more indolent (non-life threatening) cancers. However, a sense of mortality, or even an existential crisis, commonly hijacks all cancer survivors, regardless of the anticipated outcome of their disease.

Life after diagnosis (AD) feels completely different to that before cancer (BC). Time in survivorship, often viewed through a lens of palpable mortality, assumes new meaning and increased value – a preciousness of days often reserved for the birth of a child, and a sense that each passing minute holds wonder and mystery to be cherished. And with it, a burden to find and capture and distill the value of each moment.

This newly felt sense of urgency can manifest in a couple of different ways. Survivors describe time wasted akin to a mortal sin. My wife, a leukemia survivor, laments waiting in the grocery store checkout while screaming in her head “Here I am, dying of leukemia, and you’re holding up the line looking for exact change? C’mon lady, I got some living to do.”

Alternatively, as a cancer physician and caregiver, I found meaning and beauty where I never had before. One night, after catching a particularly beautiful sunset, bike-riding home from work, I grabbed my daughter from her highchair and took her outside to share it. Holding her closely in my arms I whispered, “ Look, God painted the sky for us.” She looked at me and said, “Dad. It’s really cold. Can we go inside?” I must conclude that urgency and beauty and time are relative experiences where value is perceived differently by all involved. But I am very certain that survivorship intensifies life’s colors.

Survivorship is not static. It is my theory, not yet supported by data, that survivors traverse a predictable pattern of timeline and milestones. The first phase “shock and awe” commences at diagnosis and carries through the first year or two AD. This period is characterized by chaos and turmoil of mind, body and spirit resulting from cancer and its treatment. The next phase, “finding the new normal” in years one to three AD, encompasses healing, recovery and acceptance of those changes brought on by cancer and its treatment. Shortly thereafter, the “advocacy” phase begins, in years three to five AD, as activities of giving back to the cancer community through mentoring, raising awareness and fundraising. Generally, after year five AD, folks “move on” allowing cancer to take a back seat to more traditionally activities of life thus appearing more like the lifestyle in the time BC. This timeline can be disrupted by recurrences and other traumatic cancer-related events including cancer or treatment-related death. It may also accelerate in particularly resilient individuals.

The term “survivor,” accepted by the medical community and most others along the cancer journey, leaves many cold. Some prefer more descriptive and colorful monikers avoiding the bland, vanilla-like nature inherent in the word “survivor.” For instance, some refer to themselves as ”cancer thrivers,” demonstrating that cancer has not limited them in any way. A quick run down of twitter handles such as @WomanofTeal, @BreastAdvocate. @LivingBeyondBC, @AliveandKicknDD, @CancerConnector and @GBM_WARRIOR can give you a sense of some folks’ preferred titles. Although no single word is universally accepted, negative terminology such as “victim” should be avoided.

Presently, over 15 million cancer survivors live in the United States. And due to earlier detection and better treatment, this number is projected, by the American Cancer Society, to grow to 20 million by 2026. That’s a lot of people. A lot of people sharing a similar story of fear, courage and resiliency. A lot of survivors. Survivors who may not all agree on a single name to describe themselves, but share consensus that each precious and vibrant minute of life is to be cherished.

Next in our series “Cancer, Redefined” we will explore the surprisingly often misunderstood word, “cure.”

This article was recently published on cure.

Catherine Boulay Foundation: The Power of a Word

Cancer Changes Everything

I would have been very happy being a GYN oncologist. A doctor taking care of patients. Even in an era of snark and dissatisfaction and burnout, there still remains something quite noble in caring for another individual. Taking the skills you’ve learned over a career and applying them: surgery, how and when to operate; medicine, who may respond to aggressive treatment and who is best to palliate; research, curiosity to find the next cutting edge or debunk unsupported standards of care; education, teaching these skills to fellows and residents and medical students while encouraging their understanding of the “why.” After all, isn’t that what doctors are supposed to do?

Then cancer invaded my home and changed everything.

A decade ago, my dad was diagnosed with prostate cancer. I lamented all our uncompleted plans, especially skiing out west. Shortly thereafter, in our mid-40s, my wife was diagnosed with leukemia (CML). At that time, I had limited understanding and expectations of the disease. My uncle, diagnosed with CML a generation prior, had suffered, died and was buried, all within 3 years. His adoptive son, once again fatherless. I expected the same, tacitly strategizing how to bring up our two young daughters, ages 9 and 13, solo. Although I’m a decent dad, I sucked at the things that interested my kids: crafts and Girl Scouts and conversations about boys. Ironically, the man who made a career in treating women knew next to nothing of girls.

I embarked on our family’s cancer journey without effective tools. Hope was casually tossed onto the dung heap with the other frivolities I had in the previously discarded, “living in the now” and deep connection to others. I charged into the fight with my knowledge and intellectualization. My brain, my strongest asset, had generally served me well. I had reams of information at hand: literature searches, colleagues, medical conferences, and experience. Furthermore, the defense mechanisms preventing me from experiencing my patients’ cancers, compartmentalization and intellectualization, helped me get through most of my toughest days. Trouble is, that which I had cherished, my brain and its defenses, could not protect me from life. I needed to go through this journey.

And on this journey, my patients were my guides.

Lesson one: Hope. You cannot move forward without an acceptance, or at least an understanding, that things will somehow work out. Even if, especially if, you cannot understand “why” or have little conception of what the bigger picture is. Hope is a force, an energy, a connection where all things work together for good.

Lesson two: Living in the now. Why spend time ruminating on past mistakes, past failures? They cannot be corrected, but can be learned from. Why spend time worrying what the future will bring? The future will bring what it will, whether or not I chose to worry about it. The present is all that is in our control. We can enjoy a beautiful sunset or share deeply with a friend or laugh at the unexpected.

Lesson three: Feel. Life is to be experienced. Enjoyed. Mourned. Each experience, little or large, is ours to be cherished.

Previously, I guess I understood cancer as an oncologist: I understood its breadth. The manifestation of disease. Now, as a cancer caregiver, I understand its depth. The series of changes in mind, body, and spirit that begin with the words, “I’m so sorry, your biopsy shows that you have cancer.” The complete disruption in life and lifestyle. The disappearance of hope. The isolation. And when my books and knowledge failed me, I had the best teachers that anyone along the cancer journey can ask for. I had my patients. And for them, their kindnesses, their wisdom, and their love, I will be forever grateful. For they saved the life I no longer knew I had. They recognized my hopelessness and delivered me from the abyss. And that is what doctors are supposed to do.

And so for this GYN oncologist, being a GYN oncologist is no longer enough. Although I love, and will always love, the tools of my trade and the intellectual curiosity, understanding and sharing the wisdom of cancer survivorship now seems to be my life’s calling. For this is how we heal. This is how the broken are made whole. Now, surviving cancer is no longer a pipe dream. It is the new reality. Seventy percent of those diagnosed with cancer live over 5 years. Learning how to live well after diagnosis should be our goal. That which we brand as “quality of life” should be a primary goal.

As cancer cure and control continue to rise, narratives of the wisdom of survivorship will multiply. And the stories like my family’s: a middle-aged doc and his well-since-retired, 10-year prostate cancer survivor dad on their multiple skiing trips to Colorado; or a middle-aged doc and his 9-year leukemia survivor wife celebrating the college and medical school graduations of their daughters; or a middle-aged doc celebrating survivorship events with his patients and learning from them how to manage life after cancer, these stories will become the norm. The expected. This is how we rise up. This is how we move ahead. These are the stories of cancer survivorship.

This article was recently published on ASCO Connection.

Catherine Boulay Foundation Learn About Cancer

Cancer, Redefined

“Before we start, when you talk to us about how you plan to take care of my wife’s cancer, make sure that you use language and terms we all understand,” said every husband of every patient I have ever treated.

After completing my undergraduate college degree in biochemistry/molecular genetics with minors in chemistry and psychology, I began medical school: a four-year accelerated program that was a roller coaster ride in human biology and disease. Prior to med school, I had taken exactly one biology class, and that was in high school. Despite biology, anatomy and physiology having not changed too much in the prior seven years, I still had a lot of catching up to do. I spent the first two years of medical school seated in front of a book, 12 hours a day, with chest pain. There was much to learn and I wasn’t so sure I was up to the challenge. My daughter, on the other hand, a current third year in medical school, has a different experience. “It’s not that the concepts are difficult. It’s just that there is so much of it, so fast.” But, she was a Biology major in college. And the high school valedictorian. I was neither. And for that matter, neither are most people.

For me, the language of medicine was most daunting. Super-long, complex, compound words filled each of the 700 pages in each of my books. It may as well have been Latin or Greek for all that I could decipher. In fact, much of it was. And in the beginning of each new course, there was more new language. With time, my trained brain sorted this alphabet soup and word salad into digestible patterns of information. I began to instinctively dissect these previously unintelligible phrases into manageable chunks that made sense. “Hepatobiliary adenocarcinoma”, initially read as hepato-what of the adeno-who but now immediately translates as “a liver or bile duct glandular cancer.” I began to understand and use the language in which doctors communicate. A language that I call “Medicalese.” Although initially cumbersome, Medicalese proved to have advantages over regular English, or “Human” as I now call it. Medicalese was far more precise. For instance, in “Human” I had an arm bone. In “Medicalese”, my radius, ulna or humerus provided the skeletal support of my upper extremity. Furthermore, each bone had terms that described the sections (ramus, epiphasis, intrarticular portion), the joints (ball and socket, symphasis) and the functions (structural, calcium sink and marrow production of cellular components of blood). And now, as Medicalese is my primary language, if you were to tell me that you busted your arm, I would have no fricken idea what you meant.

My primary job as an oncologist is to create a cancer treatment plan that meets the goals and values of each patient. Success requires me to be bilingual. I must be fluent in Medicalese to understand cancer: the disease, its treatment options, its prognosis and future expectations of the disease and its treatment. I must also understand the nuances of Human to understand my patient: her goals, that which she is willing or unwilling to tolerate, her values, her culture, her religious beliefs, her strengths, her limitations. Subsequently, in discussions with a patient, I constantly find myself mentally translating, back and forth, between Human and Medicalese. I often feel like I work for the U.N. with two languages scrolling simultaneously through my brain. Occasionally, during a patient conversation when word searching for an appropriate English phrase, I’ll close my eyes and search the memory banks saying, “In Medicalese we call it ‘proprioception.’ I’m trying to think of the Human word for it.”

Conversations with other clinicians, on the other hand, are precise and efficient. Sure, the words can be humongous, but their meanings are exacting. And when the terms get too long, we abbreviate. All doctors know that a GBM is a glioblastoma multiforme, the brain tumor that Senator McCain was recently diagnosed. Furthermore, these three letters not only identify the specific cancer, they telegraph its prognosis and treatment as well as anticipated side effects and complications. That’s a lot of information from three letters. This is the benefit of Medicalese. And according to W. Edwards Deming, as each system is perfectly designed to get the results that it gets, doctors often fall back into their efficient, primary language whether or not the intended audience is fluent in Medicalese. For us, it’s a language of convenience. For patients, gobbledygook.

Expecting our patients to comprehend Medicalese is both unfair and unwise. Yet in our haste, and for the sake of brevity and efficiency, we occasionally slip up. Patients, caught in the vulnerability of their disease, feel uncomfortable asking for clarification. The result is a noncommunication on the most important issue of their lives: their disease and its treatment. This scenario plays out every day to every doctor and every patient. And as a result, people make bad decisions regarding their health. Sometimes, really bad decisions. After all, this is not like getting the car fixed. The mechanic examines my car, reports to me in effusive language, and all I hear is that my car needs a new set of balls and has some sort of disharmony going on. He fixes it. I give him my credit card. Done.

Medicine, especially cancer and its treatment, is not only very complex, it is also rapidly changing. Making the right treatment decision for you requires an understanding of a vague and foreign landscape replete with enormous words, pretty charts and graphs, crazy biostatistics, novel concepts, new discoveries and an ever-growing list of nonpronounceable drugs. Understanding this landscape is the key to managing your disease. As we docs are not always reliable in conversing in Human, Cure Magazine has allowed me the honor of presenting a new blog series, “Cancer, redefined” to better define some of the newer cancer concepts, treatment philosophies, and options in the current climate of personalized medicine. I hope that you find this series both enjoyable and informative. We begin next time with the word “survivor.”

This article was recently published on cure.

Catherine Boulay Foundation: The Peer-to-Peer Consultation

The Peer-to-Peer Consultation: you are not my peer.

I am a GYN Oncologist. I work in the high stakes realm of cancer care. I strategize complex treatment plans involving surgery, radiation, chemotherapy and the newer biological agents to treat the myriad of disease that we call collectively “cancer”. Cure, or at least control, requires urgent and timely administration of these modalities along with various imaging or blood work to assure that the treatment prescribed is effective. I love my job as each day; I am privy to observing the resiliency and grace from those of whom I am fortunate enough to care. Oncology remains a profoundly rewarding profession.

But the care I provide comes at a cost. In addition to the human toll the prescribed therapy takes out of the patient and her family, there is, of course, a financial burden. Chemotherapy can cost tens of thousands of dollars per month and imaging, such as a PET scan can cost upwards of five thousand dollars per test. In efforts to control cost, insurance companies have implemented numerous policies to reduce the number of what they consider to be “nonindicated” tests. My favorite (yes, I’m being facetious) is the peer-to-peer consultation.

Most patients are unaware of this, but your physician is likely your biggest advocate when it comes to getting your care covered. At least weekly, and occasionally daily, insurance companies deny payment for some cancer treatment that I prescribe. In my career, I cannot think of a single aspect of the cancer care continuum that HASN’T been denied: surgery, chemotherapy (I once had to cancel a patient’s scheduled chemotherapy which was both effective and well tolerated, 3 months into treatment due to an insurance company refusing to pay for more treatment. They also wanted their money back for the three previous treatments. In the end, they covered the service), consultations to other medical professionals such as Genetics and physical therapy, medications to cover chemo induced nausea, imaging such as CT scans and PET scans, oh and this is a good one – back billing of a patient’s estate for the three grand after she died, for a test to see if the chemo would be effective. It was not.). As expected, as the cost is so high, denial of payment equates to a denial of service. After a series of denials and re-requests (which can delay treatment for weeks), the final step in the process of getting the service paid for is the “peer to peer consultation”.

In the peer to peer consultation, Peer 1 (that sounds too much like a store so let’s say) Peer A, the insurance company physician, almost never trained in oncology and Peer B (i.e. me) discuss, by phone, the medical scenario of the patient and why she is in need of the previously denied, prescribed service. It may go something like this (in fact this one happened last month):

Peer A – Insurance Doc: (matter of factly) “I’ve reviewed your patient’s case and see that you would like the denial of services for her PET scan overturned. Is that right?”

Peer B – me: (pleasant, business casual) “Yes that’s right. Let me tell you her story.”

Peer A – Insurance Doc: “Sure.”

Peer B – me: “This patient has a history of recurrent metastatic cervical cancer. She is presently in remission. She was initially treated for stage Ib squamous cell carcinoma with radical surgery. She recurred in the pelvic a year later and was treated with concurrent chemoradiation therapy and was in remission for another year. A PET scan then found two lung lesions. These were NOT seen on a CT scan prior to that. These lung lesions were removed surgically and she’s been in remission for the past year. I would like to do a PET scan to make sure no small recurrence is present as she is at such high risk having recurred twice already.”

Peer A – Insurance Doc: “You said she’s in remission, so there’s no need for a PET scan.”

Peer B – me: “Her CT from three months ago was normal, but as I mentioned, in the past her CT was falsely negative and her recurrence was only identified on a PET scan, giving us time to effectively treat her and get her back into remission.”

Peer A – Insurance Doc: “Let me check the policy… Wait, do you know if PET scans are approved for cervical cancer.”

Peer B – me (now annoyed): “Yes, PET scans are approved for cervical cancer and may have saved the woman’s life. What is your specialty training?”

Peer A – Insurance Doc (now annoyed): “I’m board certified in Family Medicine. Oh, here it is. The policy states that if the CT is positive, then the PET will be covered. So I’ll approve a CT scan.”

Peer B – me (trying to maintain composure): “I’m board certified in GYN Oncology. And in oncology school we review the data to determine the most effective treatment and follow up. Clearly, CT scanning is suboptimal in this patient. She really needs a PET scan.”

In the end, the PET scan was denied. I couldn’t convince Insurance Doc by scientific reasoning or rational argument, that his circular logic was faulty and the patient may pay with her life for Insurance Doc’s inability to look beyond policy. Her CT was approved, performed and was normal for whatever solace that gives us.

I have been doing peer-to-peer consultations for at least five years now. In the past, a discussion of the clinical scenario and available patient data would not infrequently overturn the denial. Not so much now. My approach of educating the insurance physician reviewer to present oncology standard hasn’t changed, but is now rarely successful. My tone may have degenerated a bit over time as the frustration of getting care covered has increased. And I wonder aloud, didn’t we have the same degree? Didn’t we have the same training? Didn’t we have the same idealistic view of changing the world one patient at a time? Didn’t we take the same oath that began primum non nocere – first do no harm? So when did our paths diverge? Our values and goals to provide our patients with the utmost in cutting edge and compassionate care, once the same, have strayed. And although it may have been so in the past, presently I must conclude: Insurance Doc, you are not my peer.

This article was recently published on KevinMD.com.

Catherine Boulay Foundation: Trust

Trust

“I love a happy ending,” Mary Clancey said as we completed our interview documenting the surgical removal of her 140-pound ovarian cancer. It is, however, the beginning of our story, the development of a trusting doctor-patient relationship, that I find fascinating. As her lead surgeon, I met Mary a mere 4 days before the big event. She told me from the very beginning that I was the man for her. She was confident that I could get her well. And I still wonder, “Why?”

After a visit to the emergency department because she could no longer walk, Mary underwent a CT scan revealing the enormity of her problem. She was then transferred 60 miles to our facility for care. I saw the scan before I saw Mary, but it did not prepare me for the physical ravages of a body under tremendous duress. She lay recumbent on her left side, the only position she could tolerate. Her left leg swelled nearly three fold due to a blood clot within her veins. She whispered and took shallow breaths as the mass compressed her diaphragm. She could barely eat and general activities of daily living (toileting and bathing) were nearly impossible. In staunch contrast to her compromised physical state, her mind and spirit remained focused, resilient, and above all, charming. She could no longer live like this. She wanted and needed surgery to reclaim her life.

Though Mary and I discussed options, she really only had one: an aggressive and life-threatening surgery often performed, but rarely on a tumor this big. So her recovery would be difficult to predict. How would her body respond to losing half its weight in a few hours? Would she be able to breathe or need a ventilator? Would her heart function better or worse no longer perfusing the 140 pounds of resected tissue? Would the blood clot break loose stopping her heart? Would her likely cancer need further treatment? Though we could not know the answers to these questions, Mary signed the “informed consent” document stating that she understood the goals, risks and benefits of the proposed surgery. How could she understand when we didn’t? Yet, she trusted.

My ultimate goal was to remove the cancerous mass safely and intact. Preoperative assessments by colleagues were required: cardiology to evaluate heart reserve, radiology to place a venous filter to catch any wayward clot, plastic and general surgery to repair her distorted abdominal wall and anesthesiology to assess the intricacies of putting Mary to sleep. Each intervention carried risk. And each required a separate informed consent document, one paragraph describing the procedure followed by two pages of potential resultant harms. Throughout this four-day process, Mary remained jovial and expectant of a full recovery. When I told her, that we would need to remove her umbilicus (“for my belly button collection,” I said), she had her son bring me a mason jar of belly button-like chocolates.

At surgery, we fastened two operating room tables together, one for her, the other for the mass. Once asleep, we placed Mary on her side. This position put less stress on her heart and lungs while facilitating removal of the mass. After incision, the huge blood vessels supplying the ovarian mass (inconveniently located behind it) were cut, tied and burned. I wasn’t taking any chances. The mass itself was then detached from nearby structures and simply rolled out onto a waiting sterile cart.

Our pathology colleagues weighed and examined portions of the specimen and determined it to be malignant. We repositioned Mary onto her back and completed the cancer staging operation. Our plastics and general surgery team then repaired her abdominal wall, removing a further 40 pounds of redundant skin. The success of the 5 hour procedure resulted from equal parts training, MacGyverism and luck.

After completion, we transferred Mary to the ICU where she recovered under the watchful eye of the intensivists. For ten days she required a ventilator, as her diaphragm muscle could no longer breathe on its own. Yet despite a breathing tube, Mary remained optimistic and met each goal. She joked via touch screen that she could once again see her ankles. And she walked. For the first time in weeks, still attached to a ventilator, she walked. And she trusted, but why? There are many answers, though none, in my estimation, explain why people put their lives in my hands every day. I asked Mary several weeks postoperatively why she consented. Her response was definitive. “You made me feel comfortable. I just knew you could do it.”

As the guy who consults Consumer Reports for anything over 100 bucks, I found this answer unsatisfying. I wanted something more quantifiable.

Everyday, I ask patients to trust me with their lives. And everyday, with little hesitation, they comply. And I still wonder how this happens. Do my graying temples and quiet confidence telegraph technical proficiency? Am I riding the coattails of the trust of the doctors who referred these patients to me? Is there some institutional aura glowing behind me? Or in these urgent circumstances, any port in a storm will do. But perhaps there is something more.

I think the doctor-patient relationship is a sacred space. It defies definition or measurement. And in this space I am my best self. The idealized version of me. Judgment, preconception and blame are left outside the door. There is no room for that here. In this intimate space, honesty, transparency and mutual respect quickly form the basis for deep and trusting relationship like no other.

It is here we discuss your abortion, your sexual orientation, your son’s suicide, your mother’s cancer and the stressors of your difficult job and tremendous family pressures in a confidential and healing manner. It is here that I will share the meaningful and private aspects of my life relevant to your journey. Things I rarely talk about outside this relationship. We will converse on the hopes and expectations you have of your unborn baby. And when no more can be done for your illness and death is nye, we will decide how best to manage your last few days weeks on this earth with quality of life, as you define it, being our only goal.

It is in this space where I can say “I love you” out of deep respect for who you are and the grace with which you’ve carried yourself throughout your illness. So, when we make the decision for a life changing and death defying surgery, it is simply an extension of this powerful relationship. A faith that within the doctor-patient relationship, we bring our best selves each time. That together we will preserve your health. Mary and I do. We trust.

This article was recently published on cure.

Catherine Boulay Foundation: The Power of a Word

The Power of a Word

She had known many losses over her forty years.

Her husband died several years ago. She lived in a car. Her eight children were under the protective care of her sister-in-law. After her recent diagnosis of cervical cancer made at a local emergency department, she required a four-week psychiatric admission for depression. Recently discharged, she was admitted under my care for treatment of her cervical cancer.

“I can feel a mass on your cervix,” I began. “The CT scan and my exam show that mass to be only in the cervix. That’s good news. This is curable, but will take some work to get there. First, I’ll have to find the results of the biopsy done in the ER last month.”

My words were met with hollow eyes and a vacant stare.

“What are you most afraid of?” I continued.

A whisper followed a long pause. “My kids,” she replied, barely audibly.

Her response was only a partial answer, the subject of a longer sentence. A thought, which when completed, sounded more like “My kids… after I die. How will they get on?” After all, there was really only one thing she had left to lose.

Although much has been researched, explored and written on the subject of cancer, its prevention and treatment; relatively little is understood about cancer survivorship; the way our minds and bodies cope with and react to cancer diagnosis. For instance, the American Cancer Society Annual Report 2016, describing the most up to date information of cancer facts and figures, reports that 92% of cervix cancer patients with local disease are cured. And due to effective prevention with HPV vaccine, smoking cessation and effective screening with pap smears, the risk of dying from this disease continues to decrease every year. Women with advanced disease are living longer due to recent interventions with newer active biological agents.

However, despite the increased cure rates, relatively little is understood of the long term consequences of cancer and its treatment for the two thirds of people diagnosed, who can expect to live at least five years. From Cancer Patient to Cancer Survivor: Lost in Transition describes several goals of survivorship care, all of which are geared toward general biological functioning and prevention of future cancers. And although understanding the psychosocial burdens of cancer (i.e. the day to day consequences of a cancer diagnosis) is advocated by major national cancer treatment societies, research into their understanding has been largely left to nongovernmental organizations such as Livestrong.

Cancer does not only affect an organ or a body. Cancer affects people and the society in which they live. Cancer affects the way we think about others and ourselves. Cancer affects the way we behave and interact. In short, a cancer diagnosis changes everything. As people are living better and longer after a cancer diagnosis, it is now time to understand how cancer changes our day-to-day behaviors, our interactions, our fears and hopes, our work and family lives, our finances, and our societal biases. It is time to understand how this one word can change everything.

I never found the result of the biopsy that proved her cervical cancer diagnosis. Instead, as her treating oncologist, I would need to perform the biopsy myself. Reexamination clearly showed a golf ball sized mass protruding through the cervix. A 30 second office procedure removed the mass. The pathology report proved this to be noncancerous.

She will quickly recover from the procedure. But it may take a lifetime to recover emotionally from the burden and trauma of a four-week misdiagnosis of cancer. A word so feared that merely assigning it could render us nonfunctional.

This article was recently published on Thrive Global.