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The New Abnormal: How a Regular Person Becomes a Doctor

Catherine Boulay Foundation Learn About Cancer

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.

Redefining Cancer: The “New Normal”

Catherine Boulay Foundation's Close to Home Video Series

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

Click Here to Purchase Tickets For You Will Be Found: April 14, 2018

Catherine Boulay Foundation Presents You Will Be Found: Songs & Lessons in Cancer Survivorship

This all new and original interactive presentation of song and story is geared toward cancer survivors and those who love them. “You Will Be Found: Songs and Lessons of Cancer Survivorship” explores the powerful lessons of cancer survivorship, beautifully underscored with songs in the style of Josh Groban.

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Cancer, Redefined: Survivor

Catherine Boulay Foundation Learn About Cancer

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.

Cancer Changes Everything

Catherine Boulay Foundation: The Power of a Word

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.