Essays

Essay 1: Reflections on Career

My career as a Physician Assistant has given me immeasurable gratification since I graduated from the Duke PA Program in 1996. It has taken me to different countries and to many different settings and communities. But perhaps most important, it has afforded me the honor and privilege of contributing something to the lives of other people. In 2004, I was diagnosed with leukemia (ALL) and have undergone two allogeneic bone marrow transplants. My experiences as a patient have certainly shaped my approach to the practice of medicine, and I am teaching my young son about the rewards of helping others in ways that lessen suffering. Indeed, as both a practitioner and a patient, there is nothing more meaningful than this.

Essay 2: Breaking Bad News: A Patient’s Perspective

The follow-up phone call from the hematologist came very early on a Saturday morning, which boded very badly for me. Just the day before, I had been discharged from the hospital after a four-day admission for fever and red blood cell aplasia. The working diagnosis at discharge had been “probable mononucleosis-like viral syndrome pending the results of a bone marrow biopsy.” But getting a wake-up call over the weekend could only mean one thing: I had something considerably worse.

He had barely introduced himself before telling me — over the course of about 5 seconds — that I had a “life-threatening” blood cancer (acute lymphoblastic leukemia), that I had a prognosis of “50-50” at five years, and that I needed to be readmitted to the hospital on an “emergent basis” to begin induction chemotherapy. Speechless at this point, I barely even remember how the interaction ended, though I am fairly certain that the last thing he said to me was, “You should do well, but good luck!” Needless to say, I am still suffering the emotional repercussions from this calamitous physician encounter.

As clinicians, we will find ourselves in the position of delivering catastrophic diagnoses to patients like me. What follows is a set of practical guidelines – the mnemonic for which is P-PAUSE — which we can follow to mitigate the immediate psychological impact and its aftermath.

Prepare your schedule. Presenting a serious diagnosis to a patient cannot be done well under rushed circumstances – whether it is over the phone or in person — and it can be devastating for a patient to sense that his provider is distracted or would rather be somewhere else. Set aside a reasonable block of time for you and your patient, which may mean that you have to rearrange other appointments or ask for assistance from your colleagues to answer pages.

Prepare your preface. Assigning adjectives to results, like “bad” or “unfortunate,” comes across as judgmental, which can in turn make the patient feel bad or unfortunate, too; remaining objective and direct is crucial here. Therefore, it is best to avoid prefaces such as, “I have bad news,” “Unfortunately,” “I’m afraid I have bad news,” “Regrettably,” and the worst offender, “You failed the test.” Instead, use a phrase like this, “I have the results of your [test]. It shows the following, which means that it is [diagnosis].” While the words we choose should be impartial, we can utilize body language to impart sympathy and alliance with a patient: make eye contact, move your chair closer to him, or lean your body in a bit. In this way, we make ourselves available for our patient without suggesting disapprobation.

Avoid emotional extremes. It is important to demonstrate a certain degree of emotion to your patient, as doing so conveys engagement and genuine caring. Indeed, a strong empathic response from a physician is an invaluable tool that we can use to attenuate a patient’s anxiety. Conversely, being detached or overly stoic can suggest indifference, or worse, condescension. Just as important, however, is tempering your response to the personality of your patient. In other words, it is certainly acceptable to cry and feel devastated by the news, but much less so if your patient is not where you are on the emotional spectrum. In fact, immediate acceptance of a catastrophic disease is not a realistic expectation, and patients may display varying degrees of denial or even disinterest. Fashion your emotional response with the personality of your patient in mind.

Use caution when discussing prognosis. There is value in knowing a patient’s prognosis for a given disease, as it guides treatment decisions. (Note: discussing prognosis within the context of hospice referrals or end-of-life care is beyond the scope of this article.) However, we must appreciate two things here: that prognosis statistics apply only to large groups of people, and that the same disease can behave very differently in different people. Making this clear up front reflects an appreciation of your patient’s uniqueness and can also be used as a tool to impart hope in seemingly dire cases where aggressive treatment is necessary but positive outcome is uncertain. (Many of us have seen firsthand what I refer to as the “living out my prognosis phenomenon”: patients seem to die on their assigned due dates.) Furthermore, handing down a prognosis right away may not be appropriate, especially if your patient is having a difficult time accepting the news. Here again, knowing the personality of your patient and maintaining hope are absolutely paramount.

Secrets: don’t keep them. Obvious withholding of information from a patient can engender fear and confusion, especially if questions are deflected or dismissed. A common slip for PAs in particular is the “partial reveal”: the results are back but the patient must wait until the supervising physician is available for a full explanation. In this situation, it behooves you to keep results to yourself until you are ready to explicate them in a comprehensive manner.

Explain options, have at least three. Communicating that your patient has options for their treatment gives him a heightened sense of hope, control, and empowerment as he faces what could be the biggest challenge of his life. Giving options also suggests that a partnership with your patient has been formed. In some situations, there may be only one definitive treatment, but you may be able to finesse its timing, location, and the use of adjuvant therapies in order to give your patient some decision-making ability.

In 2005, I was told by a physician that I was a candidate for palliative care only. Today, I find myself in remission. Over the years, I have personally experienced the pitfalls that I have described in this article and that can be averted using these guidelines. Hippocrates once said, “Healing is a matter of time, but sometimes also a matter of opportunity.” We can seize this moment as a potent opportunity to provide comfort, empowerment, and hope to our patients as they face serious illness. But take P-PAUSE: you have a scared patient waiting for you on the other side of that examining room door.

Essay 3: Reflections on Medical Judgment and Error

There comes a time in every doctor’s career when he or she will step out of an examination room, close the door, and think: “Uh-oh.”

The sinking feeling that accompanies you at that moment is just inevitable from time to time, as no amount of classroom and textbook knowledge can prepare us for the degree of unpredictability that one encounters in actual clinical practice, where highly variable patient personalities and biologies collide with disease and the limitations of available diagnostic tools and treatments. And occasionally, even our own personal limitations and biases hinder us. In this essay, I will present three actual patients that I had to illustrate the complexities of clinical decision-making and judgment. In doing so, I hope to provide the opportunity for self-examination and for a group discussion about ways to optimize both the patient-provider experience and treatment outcomes.

Patient #1: Eddie M.

Eddie was a 39-year old auto mechanic from a small, working-class town in western Iowa. He was referred to the Iowa City VA Hospital Oncology clinic by a local VA satellite for further evaluation of a supraclavicular mass.

In a somewhat laconic manner, Eddie described the mass as slowly progressing painlessly in size over the past three months. At first, he thought nothing of it, until it began to affect the range of motion of his neck. He reported no other symptoms, no past medical history, no family history of cancer, no work or hobby exposures, and a smoking habit — about a pack a day since his late teens.

On exam, Eddie appeared quite healthy, with the physique and musculature of a high school wrestler. Disrupting the smooth contour of these well-developed neck and shoulder muscles was a somewhat alarming subcutaneous growth, about 20 centimeters around, nestled above his left clavicle and insinuating itself into his trapezius muscle. It was fixed, firm, and nontender. The remainder of his physical was normal: no suspicious skin lesions, normal-appearing HEENT anatomy, no palpable lymph nodes, clear lungs, unremarkable abdominal and rectal/prostate/genitalia examinations, and no bony tenderness on palpation of his entire skeleton.

Given its ominous appearance, the tumor was biopsied promptly using a fine-needle aspiration, but the pathology raised more questions than it answered: the final conclusion from the path report was poorly-differentiated carcinoma of unknown primary (CUP) — a diagnostic puzzle, to say the least. Despite histologic and immunohistochemical evaluation to aid us (in differentiating epithelial carcinoma versus lymphoma, melanoma, sarcoma, or germ-cell), we were not able to definitively identify the primary source of this neoplasm based on pathology alone. Additional studies, which included comprehensive lab testing (including tumor markers) and a body CT scan, were normal.

Given his extensive smoking history, location of the tumor (in the upper part of his body), and the fact that adenocarcinoma accounts for a vast majority of CUP, we decided on a provisional diagnosis of metatastic lung cancer, and soon after, initiated a Carboplatin/Taxol chemotherapy regimen. (Carbo/Taxol is considered first-line treatment in disseminated CUP and has been shown to have an initial response rate of 63% and a long-term response rate of 16%.).

Eddie didn’t have great odds, but he was young and otherwise healthy, with an excellent performance status. We pushed ahead with this aggressive chemotherapy regimen and were encouraged by a very rapid initial response (tumor shrinkage) following 2 cycles of chemo every 21 days. This response was extremely short-lived, though: after the third round, Eddie presented to me looking considerably thinner, weaker, and somewhat demoralized. When he took off his shirt, I could see why: the tumor looked markedly larger than it had at his previous visit. Within a couple of days of that office visit, Eddie required admission to the hospital for fevers. A new chest CT scan showed enlarged para-aortic and mediastinal lymph nodes. He stopped eating, and he became much weaker over the course of his hospital stay. He developed night sweats, and his fevers never defervesced. At this point, given the extremely poor prognosis of CUP, we assumed that nature was simply taking its course, and we initiated a hospice referral; things seemed pretty clear to everyone involved, including Eddie, who willingly agreed to palliative care.

How rapidly Eddie’s condition had deteriorated! Observing his marked decline over the weeks left me feeling unsettled and caused me to question whether there were something else we could do for this patient. I brought up the option of a bronchoscopy/mediastinoscopy to provide us with more pathology data – or could we even go back to the supraclavicular mass, this time utilizing a different biopsy method — like core biopsy — which might yield us more sample? Eddie was discharged to home with a follow-up appointment the following week, at which point attention was paid primarily to symptom management and not to the decision regarding further diagnostic evaluation. Finally, one month after his hospital discharge, the supraclavicular mass was biopsied for the second time using another fine-needle aspiration, the least invasive method to obtain tissue within the context of a deteriorating functional status. By the time the final results were in several weeks later, Eddie was too weak and incapacitated to receive further treatment for his malignancy, which turned out to be an aggressive but potentially chemo-responsive non-Hodgkin’s lymphoma. He died in hospice soon after.

There were many “uh-oh” moments here, but the question that lingers most in my mind is why we weren’t more aggressive in pursuing an alternate diagnosis after his initial treatment failed so quickly. There are several possible reasons why. First, there was a cognitive bias in place, that is to say, the initial diagnosis of CUP and its grim prognosis established our thinking that no matter what we did, Eddie wouldn’t do well; when he failed treatment right away, this belief was just reinforced, and no one thought to question it. Second, an attribution error had occurred: because Eddie was a smoker, and poorly-differentiated CUP is very often lung cancer, we assumed that he probably had lung cancer. This is certainly fair, as CUP requires us to make judgment calls like this to guide treatment. But in this case, the attribution turned out to be false.

Much more troubling are two other errors that clouded our clinical judgment in this case. One is mistaking low health literacy with a lack of motivation for wanting the most aggressive, comprehensive care available. Eddie was uneducated and not highly self-aware, nor could he articulate well what his needs were; after all, he never actually insisted on a repeat biopsy. In hindsight, this certainly could have been because he felt resignation — a premature acceptance of what he believed to be an inevitable result. But it is the physician’s job to avoid clinical inertia, to eschew this premature acceptance, to provide options, and to question pre-existing data. We did so only tentatively, and we didn’t act on our questioning right away. Rather, we waited until it was too late.

The second: in a hospital setting, decisions are often made as a group, and if the group is working under a set of assumptions or beliefs, a “herd mentality” develops over time. Who questions the herd? Who decides to be the one to speak up and say, “This doesn’t feel right, we need to discuss changing directions, or doing something very different – and soon.” In actual practice, this is difficult to do sometimes, especially when you find yourself surrounded by people who have more experience than you do. You find yourself aligning yourself with the herd, even if that means shelving your concerns.

Patient #2: Pat C.

One of the very first patients that I ever had as a PA in a community health clinic in Iowa, Pat C. was a 52-year old woman who had multiple chronic health issues, including hypertension, chronic hepatitis C with Child-Pugh class A cirrhosis, major depression, tobacco abuse, and alcoholism. Pat downplayed her conditions and tried (unsuccessfully) to hide her drinking from me, often presenting to appointments smelling of alcohol and slurring her words slightly (i.e.: drunk). In spite of this problem list, she was actually quite stable, and our first year working together was essentially comprised of intermittent physical exams for cirrhosis progression, laboratory surveillance, and the occasional heart-to-heart discussion regarding her substance abuse. Needless to say, appointments with Pat were difficult because of the ongoing heavy drinking, which seriously hindered any actual management of her conditions; even using anti-hypertensive medications seemed potentially risky.

During one particular visit, Pat mentioned that she had found a mass in her left breast. She had felt it for quite a while, but had found her breasts to be pretty lumpy in general. She didn’t think it had grown recently, but for some reason, it stood out to her. On exam, it was mobile and felt like a small lima bean, and — in line with my patient’s personality — I underplayed it. I ordered a routine mammogram (not a diagnostic one), which came back unremarkable.

Eight more months would pass before this breast mass would come back to haunt us. During that time, Pat’s alcohol abuse continued, and the psychosocial needs that it generated seemed endless, essentially overwhelming our clinical interactions. There had been no follow-up of the normal mammogram, and we had moved on to other, seemingly more pressing concerns, like her liver function and her emotional tribulations. In passing, though, Pat mentioned to me that she thought the mass had grown a little bit. Thinking back to the mammogram months before, I headed straight to a general surgery referral, already feeling like perhaps we had lost some ground. And we had: the mass turned out to be a stage IIb breast cancer.

A testament to Pat’s overall constitution and emotional fortitude, she did quite well with treatment, finishing on schedule with few complications. The oncology service — in conjunction with hepatology — at a major teaching hospital close by had offered to treat her using attenuated doses of chemotherapy, but only if she abstained from drinking alcohol. She agreed, though I suspect she drank during chemotherapy and radiation. In any case, she made it through, and I was left with some explaining to do.

There are several elements to this case that can help me explain the improper work-up of this breast mass. First and foremost, it is important to appreciate that mammograms can miss cancerous tumors, between 8-10% of them. As busy clinicians, sometimes we rely too heavily on the results of such a test when making a decision about how to proceed with making a diagnosis; we can feel a false sense of reassurance. We encounter patients all the time who look horrible clinically, but whose labs or x-rays are normal. Does that mean that they have nothing serious going on? To the contrary, what this means is that perhaps we haven’t found the right test, or we haven’t given the disease enough time to declare itself in a more apparent way. And there are certain diagnoses that can’t even be made using a test. In Pat’s case, the “normal” mammogram alone made the diagnosis for me, and it should not have done so.

Second, clinical judgment can sometimes get clouded when a patient has what I call, “Alot Going On.” Pat had several chronic conditions within the context of active alcohol abuse and frequent psychosocial instability. With patients like her, we sometimes fail to organize our clinical priorities appropriately: a patient’s sea of complaints and needs becomes overwhelming and drowns out our own thinking about certain matters. We find ourselves possibly dismissing things that to a less complex patient would seem quite pressing and significant. But patients like Pat cannot organize their problems for us, nor protect us from feeling overwhelmed by them. That job is ours.

Finally, clinicians may find themselves asking the question, “Well, even if it were [insert diagnosis], what would we be able to do about it in this patient anyway?” So did I fail to prioritize a possible breast cancer in this patient because she was an active alcoholic? Or worse, because I thought the cirrhosis would probably “get her” in the long run? If I did, it was not intentional, but all of us should be aware of our personal biases, and how they might nuance our approach to certain types of patients and the clinical decisions we make for them.

Patient #3: Giovanni “Gio” V.

Mr. V. – he actually preferred to be called “Gio” – came to see us in the VA Heme/Onc clinic from Moline, Illinois. He was a very sprightly 81-year old gentleman with advanced pancreatic cancer and recent-onset obstructive jaundice. Management thus far had consisted of watchful observation following a modest debulking surgery several weeks prior. Fortunately, Gio was not in too much discomfort; in fact, his demeanor was positively buoyant. In the first 30 minutes of our encounter, I had the pleasure of hearing about his three sons and his daughter, of whom he was quite proud, and about his late wife of over fifty years. “When I walk down the street, I hold my head up proud,” he told me, referring to the gratification he felt from his family. At one point, he slipped his hand in his pocket and pulled out a couple of wrapped hard candies. “I always carry these so I can put a smile on someone’s face,” he told me, as he placed them in my hand. And of course, I smiled; he had succeeded there.

The business at hand was how to approach this obstruction. Options included chemotherapy (low-dose gemcitabine), biliary stent placement, or symptom palliation (hospice). After talking to both Gio and his concerned children, who had dutifully accompanied their father to this appointment, it was pretty clear that everyone’s first priority was his life’s quality rather than its quantity. Indeed, decisions about cancer treatment in the geriatric population require us to consider the ways in which a shorter prognosis is actually more optimal than subjecting an elderly patient to the harsh side effects of drugs, surgeries, or both. What with pre-existing functional status limitations, renal clearance issues, and nutritional deficiencies, the chances of adverse reactions and further impairment are much higher; aggressive treatments can seem almost barbaric and cruel. Gio’s quality of life was intact so far, and no one wanted to compromise it in any way. Chemotherapy was taken off the table.

Even so, our team felt that a meeting with GI and Interventional Radiology was appropriate – essentially as an exercise in exploring all the options thoroughly so that the family could make an informed decision. This took place the same day. When they came back to the clinic to debrief on it, they told me that IR seemed to think that stent placement would provide the best long-term palliation. They were made aware of the possible complications (bleeding, infection, perforation, death), but also told that the alternative – the obstruction’s inevitable progression and subsequent morbidity – probably outweighed these risks. After a brief discussion with the family, it seemed to me like they were satisfied that an intervention like this was in Gio’s best interest. The very next day, Gio underwent the stent placement. With his usual graciousness and enthusiasm, he had handed out candies from his jacket pocket to the nurses who prepped him for the procedure.

After it, Gio never regained consciousness and he died in the hospital three days later.

We never identified exactly what went wrong, but it was likely that Gio’s unforeseen mortality was multifactorial. The procedure may have seeded a blood infection, perforated a lumen, or caused a cerebrovascular accident. We also considered a possible adverse reaction to anesthesia, or to the post-op morphine that was administered when he became agitated. In any case, we gave IV antibiotics, fluids, and Narcan. Things got worse (thrashing, fevers upwards of 104, and heart failure). Finally, he sustained a cardiac arrest with failed resuscitation. Needless to say, his stunned family was almost relieved.

Our team held its own private M&M on this case several weeks later. We all felt that we had somehow robbed Gio of several weeks to months of quality time left with his beloved family; his death served as a potent reminder that as medical practitioners, we hold the power to make things considerably and irreparably worse for any given patient. Naturally, we all felt that the stent procedure had been a mistake. Gio had valued quality of life over quantity, and he had never expressed any desire for aggressive intervention. In any case, we learned a couple of things from this situation.

First, the importance of tailoring a management plan that is patient-specific — in other words, the treatment has to fit the patient’s unique personality. This requires listening to the patient and appreciating his priorities, sensitivities, and concerns – and in turn, setting aside our own priorities and values. Looking back, Gio had demonstrated a high quality of life and a vivacity that far outshined the need for a risky, invasive procedure. But this was largely ignored, his priorities outmatched to those of a medical team that is so often driven by protocols, risk-benefit analyses, and statistics. These certainly help guide treatment decisions, but we cannot allow them to trump the needs of an individual patient, nor do they provide the sole rationale or reason for a medical decision. Informing patients and families so that they can make a sound decision requires an integration of the objective medical data and the highly subjective aspects of a patient’s personality and needs.

Second, the practice of medicine often requires the use of restraint. That is to say, just because we have the technology and capability to put a stent in someone’s biliary duct – and this is an impressive feat, indeed – it doesn’t mean that we have to use it. We find ourselves writing prescriptions, ordering fancy and expensive tests, or inclining towards more “definitive” yet highly invasive procedures….just because we can. But we have to stop and think: is this really in the patient’s best interest? In practice, doing “less” for a patient should not be conflated with not doing “enough.” In fact, in Gio’s case, continuing watchful observation – doing “less” – would have prolonged his life.

Discussion Questions

1. If you saw a patient fail treatment for a presumed diagnosis in a rapid fashion, would you question the diagnosis? Would you do so if your attending wasn’t on the same page?
2. Do you ever feel biased against patients with substance abuse problems? Like, why bother?
3. Do you feel comfortable with how sometimes doing nothing for a patient is really something? When less is actually more?
4. Have you ever had an “uh-oh” moment? If so, what happened?

Essay 4: “Who Did Your Hair?!” How to Avoid the Social Pitfalls of a Cancer Survivor

In the end, it was my inability to get up off the living room floor that finally compelled me to investigate further the symptoms that had not, only two weeks before, seemed quite so dramatic, or from my vantage point lying on the carpet, so potentially life-threatening. It was November 2004, and as it turned out, it was cancer. Bad cancer.

Cancer survivors like me are everywhere these days. We are people who, through some unexplained and perverted twist of fate, have come face to face with a cancer diagnosis and possible death, and who have had to fight unimaginable physiologic battles for months, sometimes even years. We are patients who have “made it through,” but we are not the same as we were before. And socially, our physical and emotional transformations can impact us negatively. People say things, do things, or ask me certain questions that are so seemingly inconsequential to the naked eye, but for me provoke an emotional tailspin of staggering disproportion. It’s astonishing to watch, but not in a good way.

In my case, the exact diagnosis was acute lymphoblastic leukemia (ALL), which had the unfortunate side-effect of stopping new blood formation in the bone marrow, which in turn happens to be necessary to maintain an upright posture. Within 24 hours of my diagnosis, I entered the time of my life that I now refer to as the complete and total destruction of my self as an epicurean being without hair. I have had it all: the chemo, the radiation, the possible side-effects, the bone marrow transplant, the relapse (“the mistake the lab made”), more chemo, and then graft-versus-host disease from the transplant, a condition in which the transplanted stem cells have immunologic activity against one’s own tissues, including cancer cells. This most likely explains why I am still alive, and I have, indeed, “made it through.” But here’s the rub: aside from the “ravaged” look I sported during the year 2005 and half of 2006, I have never looked worse (not counting a brief period in my early teens when I had untreated acne, braces, and bad clothes all at the same time). The phrase “chronically-ill appearing” has been used to describe me (I know this because I’ve read my medical records from Clinic — where the lighting is extremely unflattering — and let me just say that I deeply regret doing so). People see me and think, “I can’t put my finger on it, but something just isn’t quite right with that girl!” Is she a heroin addict? Does she have an eating disorder? Was it some kind of accident? No, no, and no. I got cancer, and I had to endure some kick-ass cancer treatments which just so happened to kick my own ass also. It was worth it. But I have come to realize now that there are rules for social interaction that apply to cancer survivors like me, rules that — if followed correctly — can help us avert the pitfalls that threaten our sense of well-being and our friendships, and that inadvertently place us, shuddering, on the periphery of mainstream society.

Rule number one is that it is best to avoid making comments about our appearance. Generally speaking, we all want to hear that we look good; I can’t tell you what I wouldn’t do to once again experience the workplace sexual harassment of my pre-cancer life (or to never again be the subject of yet another scrutinizing “gaze” and then the inevitable, “I’m worried about you!!”). That said, we have had physical changes – some bad — and we are self-conscious about the physical differences (real or imagined) that we now have. I have been told innumerable times by well-meaning friends and family that I look so much…better. It’s true: I do indeed look better than I did bald and retching into a bucket. But this comment serves only to confirm that I definitely looked like crap before and, while I don’t look good exactly, I do look better than I did lying in a hospital bed white as a sheet with a tube coming out of my neck. It’s just useless information. To make matters worse, my own twin sister has pitfalled me several times with the joke, “You look like a million bucks!” Like me, my insurance company thinks this is hilarious. I am what a million dollars will buy you these days (though my sister might argue that I should have been capped at two-fifty, and unless I start being a more “productive” member of society, she may have a point, as my plans to start a foundation have yet to materialize). I am beginning to wonder if they overcharged me, considerably. Now we find ourselves treading on the slippery slope of self-worth, both in terms of money and our contributions to the greater good of the world. It behooves you to keep your thoughts about how we look to yourselves.

Rule number two: use caution when sending cards that have catchy clichés on them. These often gratuitous tokens of your thoughtfulness that you send during our treatment — and in my case for years afterwards — can easily annoy or be utterly meaningless to us. Some examples are: Here’s hopin’ you’re copin’! Get well soon, and my personal favorite birthday card, How old would you be if you didn’t know your age? These are cute and well-intentioned, but quite frankly, they ring hollow. We just don’t feel like rhyming right now, folks. And translated into the language of the cancer survivor, “Get well soon” really means “Try not to die (soon),” and we all know it. As for birthday cards, they are wonderful reminders of our survivorship status for obvious reasons. But the answer to your question is: about eighty (I’m thirty-five), suggesting that this particular offender is best given to your spirited and irreverent great-aunt who still drives and takes Pilates.

Rule number three is a hard one to consistently follow because it feels natural to end all of your conversations with cancer survivors with a resounding “GOOD LUCK TO YOU!” Hearing this over and over can cause extreme anxiety, as luck has betrayed us in the past. Our relationship with luck is very complicated; the very definition of ‘cancer survivor’ suggests that we are both lucky and unlucky at the very same time. Am I lucky – overall – because I’m still alive and have “beaten the odds?” (Whatever that means; we’ll delve into statistics later.) Or am I pretty darn unlucky, relatively speaking? Do I have less luck now than most people? Is my bad luck going to “stick,” or did I just go through a bad-luck “phase,” not unlike my bout with acne and braces? Do I look like I need luck? Is that what you are really trying to tell me? Is there something you know that I don’t know? Attention all acquaintances and especially doctors: when it’s time for social disengagement (writing us off), nothing good comes from wishing us good luck. Instead, try: “I hear you’re getting an oil change for your car. Have a great time with that!”

Bringing up your personal religious convictions is a potential quagmire and comprises rule number four: tread lightly around faith-related topics and don’t impose your beliefs without first confirming that we agree with you. Such seemingly benevolent and helpful statements as “God doesn’t give you things you can’t handle” and “God has given you this challenge to teach you something” suggest – albeit in a subtle way – that God is responsible for assigning illness and catastrophe to certain people. ‘Finding God’ in the depths of despair is a phenomenon that, for many of us, is no coincidence and very real. In the midst of some of my greatest suffering, I experienced a growing sense of faith, which I am pretty sure was not related to my (judicious) use of IV sedation. Our relationships with God are intensely personal, and, if I dare speak on behalf of my peers, based on the idea that God didn’t bring about our afflictions, suffers right along there with us, and is there to help heal us. We are all entitled to our beliefs, including the belief in God’s non-existence, but people who say these things are sometimes so profoundly mistaken — and therefore faith-wrecking — when we consider that some things just can’t be handled (people die), and sometimes the illness is so catastrophic and the suffering so great that there’s really nothing to be learned, at least not from down here. And in my mind, nothing saddens God more.

I’ve been asked about my prognosis on three separate occasions. This is wrong. The last rule for optimal social pitfall circumvention is: don’t ask us, “How long have they given you?” — ever. The first time that this question happened to me was the most difficult and the most poorly handled on my part. At the playground with my young son one afternoon, an acquaintance of mine, after declaring (loudly) that I looked better, casually inquired in front of children how long the doctors said I had to live. Naturally, her innocent query caught me off guard (and engendered massive emotional conflagration), but being the professional patient that I am, I proceeded to delineate for her the evidence-based statistics as they pertain to post-transplant, post-relapse ALL. This didactic explanation under the monkey bars took about twenty minutes, and by the end of it, we were both pretty freaked out. Fortunately, I have learned over the years less regrettable and more protective maneuvers such as, “Statistics don’t apply to individuals, only to large groups of people, so it’s hard to say what anyone’s prognosis really is,” or the more straightforward rejoinder, “I dunno.” The only applicable statistic for anyone, really, is 0 or 100%, and it’s easy to calculate: if your heart is beating, it’s 100%, which is encouraging. Still, I respectfully enjoin you to relinquish your curiosity or camouflage it more appropriately. Or use Google.

During my freshman year in high school, I ate lunch everyday alone. The cafeteria – and the intricate social maneuvering that it required – was too utterly petrifying for me to handle at the tender age of thirteen. Instead, I snuck food into the library, where I could eat in relative peace and study (I did well that year, academically). As I got older and more mature, my identity as a pretty cool gal emerged, and by twenty, I had honed the ability to walk into any room and just make it work, you know? Getting cancer absolutely dismantled this ability. The tubes are out and the hair is in, but I once again find myself in that vast hollow vacuum of a high-school cafeteria: I don’t know where to sit, or if I’m really supposed to be here at all. And getting ensnared in the predicaments that my rules are designed to prevent aggravates these feelings of social isolation. As cancer survivors, we have experienced some great losses, and for some, the most anguishing is this perceived loss of communal affiliation and approbation that comes from being healthy. But don’t worry about me: now that more people are aware of the rules, I already feel so much better. And, luckily, there’s a 62% chance that I’ll be back to normal again someday soon…God willing.