Saturday, September 29, 2012

No Evidence of Disease (Idle Words)

What a read. This will be considered on my list for "must read stories" of 2012. Thanks for Om Malik for steering me to this one. 

No Evidence of Disease (Idle Words)


No Evidence of Disease

Diane Person and Stephanie Bourque

My girlfriend Diane met Stephanie last October at a free makeup event for women with cancer called Look Good Feel Better. It was one of the curious get-togethers you get invited to when you are ill. Women showed up, got a make-up kit, and listened to some instruction in how to use it, including useful tips on drawing in the eyebrows (the most visually unsettling side-effect of chemotherapy).

Diane is not normally a makeup person, but she decided to attend on the principle that there should be some kind of benefit, any benefit, from being sick. She and Steph were the only two younger women present at the event, and they hit it off immediately.

Diane, who is 33, had just started chemotherapy for recurrent cervical cancer. Her initial tumor had grown undetected while she was serving in the Peace Corps in Romania. It was surgically (robotically!) removed after her return to the States in the autumn of 2010.

Surgery for cervical cancer has a very high success rate if you catch it early, and our oncologist had been optimistic. There would be no need for chemo. After the operation, Diane would have to come in for regular checkups, and if she made it through two years with no evidence of disease, it was likely the cancer was gone for good.

Once you've had cancer, no one will ever tell you you're healthy. The best you can hope for (and it's wonderful) is the little phrase ‘no evidence of disease’, often shortened to NED. This is less comforting than what you really want: a 100% guarantee that your body is cancer-free. But for many types of cancer the detection methods remain primitive. Absence of evidence is the best you can get.

The first few check-ups turned up nothing. Recovery is a strange time; it's not clear when you're allowed to start your normal life again. Diane and I traveled to Japan, and signed up for a summer language school in Monterey, and tried to figure out what came next.

And then there was the exam that was a little equivocal. An ultrasound showed a mass in one ovary, and a PET scan found some anomalous glucose uptake. The oncologist did not think it was cancer. It was normal to see the gonads light up in a PET scan, she said, and it was normal for ovarian cysts to form after a hysterectomy. But the cyst was large, and it would have to come out.

So... what are you doing later?

I knew the news was awful when the normally wry, sarcastic Dr. Powell gave me a hug outside the operating room. Oncological surgeons are unsentimental people. You don't want them hugging you.

No one could give us a helpful answer on survival rates, because the cancer had come back in an such an uncommon place. With two operations behind her, Diane now faced the rest of the cancer triad, chemotherapy and radiation. We met with new doctors who used slippery language about ‘still considering this curable’, and adapting to the ‘new normal’ (otherwise known as the ‘old shitty’). We had appointments in the kind of places that are decorated with tactful posters about end of life care. It was a long way from the festive optimism of early stage cervical cancer, with its minimally invasive robot surgery and >95% cure rate.

After hitting the five percent jackpot, we would not have been comforted by the statistics on further recurrence even had they been good. And the statistics sucked. Diane's case history was idiosyncratic and hard to match to the literature. But I couldn't help but notice that the tables in the papers had captions like ‘two-year survival rate’, and the percentages in the tables weren't high.

Cancer comes with an entourage: fear, loneliness, and isolation. Diane didn't go to the makeup event expecting to make a new friend, but it was a way to get out of the house. She came home excited about having met Stephanie.

Stephanie was ten years younger than Diane. Her illness was acute myeloid leukemia (AML), a type of blood cancer in which cancerous precursor cells completely take over the bone marrow. Steph had gotten her diagnosis while studying abroad in Spain, and had been treated there long enough to put her into remission and send her home. Now her life was on hold, and the cancer was coming back.

Her long-term prognosis was poor. Steph was reticent in talking about it straight out, but after she and Diane became better friends, it became clear that she did not expect to survive a year. Her only hope lay in a difficult and risky transplant procedure. I couldn't imagine having to face this at 23, but of course no one gets to make the choice.

round 1

Chemotherapy is a word that covers many miseries. For some people, it's weekly pills that cause fatigue; for others, it may mean daily injections that will make you wish you were dead. For Diane, chemo was a series of intravenuous infusions administered every three weeks, for a total of six cycles.

The actual treatment was not eventful. We would arrive at Kaiser on a Thursday morning, chat with David the chemo nurse, and then sit for seven hours as he hooked Diane up to a series of plastic bags. First came the hundred-dollar nausea pill, then saline, abraxane, cis-platin, and saline again. And a sensible dinner.

It took some hours for the side effects to reach full strength. The first couple of times, before the nausea came to stay, we were even able to stop at the Japanese market to pick up treats, and take a walk on Bernal hill. But with chemotherapy, the trend is downward.

The night after the infusion would be okay, the next one not so good, and then the weekend was awful, like a severe flu, until the acute effects gradually faded over the following week. With each cycle the recovery got less pronounced. The first few rounds, Diane made little graphs of how she felt in the first ten days after chemo. Here is her graph for cycle 2:

And six week laters, the graph for cycle 4:

She stopped making graphs after that.

The nausea took a while to set in, but it was cumulative and it did not fade. It took skill to find foods that would get past it. For a while, I had success with plain sushi rice wrapped in an omelette. After that, we fell back to the food of last resort: McDonald's happy meals. It was good when Diane could sleep a lot, but often the drugs she took to control side effects left her restless and antsy.

Our landlady, a decrepit eighties rock star, had chosen this time to renovate. The windows were full of workmen, and we would often wake to the sound of power sanders and scraping. The equally decrepit dog would stomp around upstairs and bark for hours when she was not home. I have never been so miserable along so many dimensions, and I wasn't the one getting chemo.

Into this world, Steph would come to visit. It was good to have her around. She was smart, acerbic, and talkative. Cancer had derailed her life right at the time when most people get to jump into adulthood and independence, and she did not hesitate to express her feelings about that. She did not hesitate to express her feelings about much of anything. She and Diane would sit and knit together, watch TV, or on intrepid days go down the hill to attend a restorative yoga class. I would go off for a while into my computer world, happy that there was someone else in this extremely confining world of disease and home renovation.

The friendship (and the makeup kit) was one of the few silver linings in a bad year. Steph and Diane could talk to each other without bullshit or all the emotional work that goes into conversations between the healthy and the well. They were on the same side of that invisible barrier. Stephanie was unsentimental, and her sense of humor was even darker than ours. It was a nice change from the near-Canadian levels of earnestness that ordinarily accompany cancer chat. I admired her lack of self-pity, given the harshness of her diagnosis. But she was an angry person, and the enormity of her anger could be unsettling, even though it was never directed at us, but only her doctors and family.

Cancer is a crucible that tests every relationship you have. One of its first lessons is that having your relationships tested sucks. At 33, Diane found herself in the role of patient zero for many of her friends, their first time confronting real illness. Some of them disappeared. Others wrapped themselves so tightly in platitudes that they might as well have not been there. Still others accepted the news, but did not seem to internalize it, talking and behaving as if nothing out of the ordinary had happened, as if the best way to deal with the cancer was to ignore it. And a few sterling people came through, offering comfort, giving rides, showing up, and finding creative ways to help.

In many ways, it was worse for Steph, who was barely out of school. I know that when I was in my twenties, my friends would have found it a spiritual trial to lend me fifty bucks, let alone help me deal with something like cancer. Steph was so young that some of her treatments were still taking place at the pediatric hospital. The people she knew were fresh out of college and starting a brand new life. So she and Diane formed a strong bond, though for Diane it came at the price of knowing she might lose her closest friend with little warning.

From what we could tell, Steph's home life was weird. Her mother, as described to us, was some combination of nemesis and chauffeur, shuttling Stephanie between medical appointments while having towering arguments with her daughter. We saw Stephanie's mom sometimes when she dropped Steph off, but never interacted with her. Steph often seemed slightly manic, and it was hard to tell how much of her family drama was exaggerated or self-inflicted, or magnified by illness. But it didn't really matter.

Treating Steph's cancer meant replacing her bone marrow, either through a transplant (if she could find a matching donor) or with an infusion of umbilical cord blood, which is rich in undifferentiated cells. The doctors would first have to destroy her bone marrow with full-body radiation and chemotherapy, then inject the donor cells and keep Stephanie from dying of infection long enough for the graft to take hold. The first few weeks were the time of maximum risk for infection, and she would have to spend them in a sterile hospital room. After that, the danger would come from graft vs. host disease, as the transplanted cells tried to mount an immune defense against her own body. This condition could become chronic, but it was at least treatable.

Steph had her transplant operation in November. As many people do, she declared it her 'zeroth birthday', and posted a picture of herself holding a carefully sterilized cupcake from her treatment team.

To our immense relief, she told us there was no post-operative infection, and her doctors sent her home to recover when the graft took, only three weeks after the transplant. The donor tissue had successfully moved into her bones and started making blood cells. It went about as well as these things can go .

But then her recovery seemed to stall out. Her native cells, which should have been destroyed by the radiation she got before the transplant, were still showing up in her counts. Her doctors told her she was at high risk for a relapse, and she had to decide whether to try going through the whole procedure again.

I wish I could say Steph opened up and talked frankly at this point. But she was always oblique, always deflected attempts to be direct about her illness and to what extent she was willing to fight it. Diane got the impression that she was focusing now more on the day-to-day, and on enjoying the time she had, and less willing to undergo difficult and risky treatment. But aside from a few earnest blog posts, everything about her status was communicated through jokes, hints, and banter, and it was hard to get Steph to give us the full picture.

For Diane, the New Year brought radiation. The procedure itself was quick. After the first two visits, when they calibrated the machine, she could be in and out of the cancer center in ten minutes. But getting there meant half an hour in the car every day, for six weeks, and that meant vomiting and misery.

The radiation treatments ended in February. Towards the end of that month, when Diane was beginning to recover from the side effects, and Steph had recovered enough from her graft, I suggested that the two of them take a trip somewhere. The tacit understanding was that it might be the last opportunity for Stephanie to have a vacation, sit on a beach, and feel like a normal human being. Because of her immunosuppressed status, it was risky for her to fly, and risky for her to be in a new place. But she responded to the idea, and thought it was worth the risk.

The trip carried some dangers for Diane, too. Coming so soon after pelvic radiation, airplane travel could lead to serious complications, including lymphedema. But given the situation, it was a risk she was willing to take to be with her friend.

Steph and Diane spent five days on Kauai, sitting on the beach, washing their hands a lot, getting stared at by tourists. Stephanie had brought along a list of hospitals in case there was a crisis, but luckily they never had to use it. I got a nice postcard, and the two of them returned happier than I'd seen them in a long time.

Through the course of her illness, Steph had to endure weekly bone marrow biopsies - an awful, painful procedure that requires jabbing a thick needle into the hipbone. At one point she even posted a photo of the disturbingly thick needle they used for this. And while the graft had taken, the biopsies showed her old cells were still present, and had not been entirely replaced.

We had a couple of bad scares with her; nights when she would be admitted to the hospital with a fever. Many times she was too weak to correspond or chat, and the only point of contact between her and Diane would be a game of online scramble. As the spring went on, Stephanie developed signs of necrosis in her hip joint (a common complication after cord blood transplant) and had to spend a couple of weeks on crutches. It was possible she would require hip surgery or replacement.


In the middle of July, Steph posted a series of messages on Facebook. Something was wrong at home. She was half-crazy with sleep deprivation, bouncing from hospital to hospital in search of a place to just lie down and rest, and had finally landed in the emergency room at CPMC. It was hard to piece together what was going on. Diane drove to the hospital to see her, and waited with her until she was checked in to the psychiatric ward. The next day, Steph's psychiatrist suggested she could have her discharged if she had somewhere to stay. We figured Stephanie could sleep it off at our place, calm down, and we could talk about the situation once she was rested and more lucid.

But that never happened. For the next two days, Steph was either fast asleep or endlessly talking. She had always been a talker, but now it had become a river of words, pressured speech that jumped from topic to topic. Whatever was happening to Steph resembled mania. She was riffing on everything, telling stories, and finding it hard to listen.

It had me puzzled. I wondered if Steph had abruptly stopped taking some drug and was experiencing a reaction from withdrawal. I also knew there had been CNS involvement in her leukemia, and worried that this might be a neurological symptom of her cancer. On the third day, Diane drove Steph home to pick up some medical paperwork, and things got even stranger. Stephanie locked herself in the shower, started breaking things, shouting threats against her own mother (who was not home at the time), pleading with Diane to leave, and crying.

Not knowing what else to do, Diane called Steph's psychiatrist, who seemed just as surprised. Her only suggestion was that Diane not leave Stephanie alone. But towards ten o'clock, Stephanie came out of the bathroom, dressed, and declared she was "going for a run", leaving Diane by herself. Diane called a friend of Steph's who lived nearby, and eventually they collected Stephanie and left her in the friend's care. Diane came home exhausted.

While we were still discussing what had happened at Steph's house, the psychiatrist called. She had been speaking with Stephanie's mother, and had an urgent question for Diane.

"How certain are you that Steph has cancer?"

Well, it was a ridiculous thing to ask. At this point Diane had known Stephanie for ten months. She had seen Steph through the worst of her treatment, seen her lose her hair, her frequent bruises, her jaundiced complexion, the wound under her clavicle where the I.V. port was put in, dozens of pictures of her in the hospital, months' worth of Facebook posts encrusted with comments from family and friends.

She had also been to Steph's house, seen vials of drugs, stacks of medical paperwork, all the various medical stuff you accumulate as a cancer patient. She had met and spoken with Steph's mother, who for months had driven Steph to chemo appointments, and who cared for her after the cord blood transplant. Unless you assumed that Steph's whole family was complicit, it didn't seem possible for it to be an act.


There were things that didn't fit. The mildness of the graft vs. host complications after her transplant, and how quickly the complications had faded. At the time, it seemed like incredible luck, and we didn't question it. But it seemed to fit a pattern where alarming symptoms would show up for a while, and then fade away unresolved. There was the way Steph deflected all attempts to visit her in the hospital, and never gave a straight answer about exactly where she'd be. There was the box of surgical tubing, scalpels, and bag of fake blood in her room, which Steph had dismissed as a gag gift.

And there were the photos. Stephanie had posted lots of photos from the hospital to her Facebook feed, and they had not seemed peculiar in that context, but looking at them all together revealed a disturbing pattern. There were lots of pictures of hospital 'stuff', examining rooms, and equipment. But none of those pictures ever showed Steph, or anyone we might recognize. The photos that Steph posted of herself were all tightly cropped on her face, with only a pillow or blank wall as background. While she wore a hospital gown and had an oxygen tube, they could have been taken anywhere.

Her photos didn't look anything like the photos I'd taken of Diane in the hospital, where there was always medical junk somewhere in the background - outlets, wires, IV stands, posters, whiteboards, gas valves.

And the photos I had were full of people. There were only two photos Diane could find that showed anyone from Steph's medical team. Both were pictures of a nurse in full surgical scrubs holding Steph's bag of umbilical cord blood right before the transplant. In one of them, the nurse was mimicking a cradle with her arms. The picture was taken against a blank white wall, and for some reason the nurse was wearing a wig. Her face was completely covered with a mask, but looking at the photo, and at the nurse's eyes, I had no doubt that it was a picture of Stephanie.

On the one hand, it seemed to beggar belief that a young woman would make an entire illness up out of whole cloth, for no apparent reason. That she could lie so outrageously, and for so long, to one of her closest friends. On the other hand, something extremely fishy was going on. Diane told the psychiatrist the truth, which was that we had no direct evidence Stephanie was sick.

The psychiatrist, meanwhile, had had her first conversation with Stephanie's mother. She learned that Steph had not spent a night away from home in months, even after the transplant. Stephanie had told her mother that it was an outpatient procedure, which the psychiatrist called "a medical impossiblilty".

Stephanie's mother also said she had never been allowed to come in to chemotherapy, or to meet her daughter's doctors. Stephanie had threatened to call the police if her mother tried to enter the hospital.

And Stephanie had a curious morning ritual. Was it normal, the psychiatrist asked, for a cancer patient to be shaving her head every day?

Normal was not a word that leapt to mind.

“You think that was a real psychiatrist?” I asked Diane after she got off the phone.

Yes, she was an actual doctor; Diane had seen her in the hospital wearing ID, interacting with staff, doing doctorly things.

“She's not very good at her job, is she?”

The final confirmation came through UCSF, where Stephanie had supposedly had her transplant. They had no record of her as a cancer patient. The whole procedure, from weekly biopsies, to chemo, to hip necrosis, to sudden fevers, to 0th birthday cupcake, had been a fabrication.


I sent Stephanie a draft of this post, curious what she had to say, and she made the good point that I know nothing about her real medical status. “For the record,” she wrote,

“I wasn't lying about everything. I was treated for cancer, and I did lose my hair. I was told that, should I relapse, my only treatment option would be an allogeneic stem cell transplant.”

“I did lie to some people (Diane included) about some of the details of my treatment over the past year, but please do not assume you know the "truth" about me or my medical conditions.”

And this is sound advice. I don't know anything about Steph's real cancer status (though I have a hunch!). All I know for certain is that she feigned a life-threatening medical procedure and grueling course of treatment for ten months, and did it well enough to fool her family, therapist, and friends.


People who do fake cancer seem to fall into three groups. The first is the easiest to relate to — regular old swindlers like Jessica Vega who do it for the money. Cancer is an efficient way to open pockets, and while repugnant, the scam doesn't hold real deep psychological interest.

The second group are people like Suzy Bass or Ashley Kirilow, who pretend to have cancer in order to get an emotional fix from their loved ones and community. They seek attention and sympathy from healthy people, and tend to steer clear of the medical system, perhaps for fear that any real scrutiny will expose them.

And then there is the third group, the professionally ill, who are drawn towards the medical system like trainspotters to a railroad track. They are a disease of the medical system itself, subverting its resources and draining time and energy from those who can least afford to spare either.

Ironically, this fakery has itself been medicalized under the rubric of factitious disorder. It's defined as a chronic and intentionally deceptive pursuit of medical treatment, to the point of self-harm, for no apparent benefit other than assuming the role of patient. The Mayo clinic has a page describing Munchausen syndrome (one subtype of factitious disorder), and by reading it, you can see that the disease template is an uncomfortable fit. There's no known cause, no treatment, not even a consensus about how to confront 'sufferers', or minimize the damage they do, or advice to give them about getting better.

And really, what are you supposed to do if you suffer from a factitious disorder? Go to the doctor? You're already at the doctor! And anyone who wants to get better, by definition doesn't have the disease.

Almost everything that happens in a hospital depends on the assumption that patients and doctors are on the same team, working together. But a factitious patient is an adversary, and will go to astonishing lengths, including self-harm, to get a diagnosis.

I am not a doctor, so I am not qualified to say whether Stephanie suffers from factitious disorder. In my mind, she's not so much a medical parasite as she is a cancer remora, eager to attach herself to a genuinely sick person and go along for the ride. Had Diane's cancer not gone into remisison, I'd like to think that Stephanie might have come clean about what she'd done, in order not to sap attention from a dying friend. But I have a hard time believing it.

I have wondered to what extent Steph (and people like her) are broken, and to what extent they're just bad. That is one of the questions of mental illness — at what point does being crazy excuse you for being an asshole?

But I also feel I've met my lifetime quota of worrying about the inner life of Stephanie Bourque.


Being duped is humiliating. You backtrack and see how unconvincing the props and scenery look in the light of day. The storefronts turn out to have been cheap painted wood, the mountain landscape is just a flimsy canvas. But that feeling is normal. The lies only needed to be convincing in the moment, and their very audacity made them easy to sell.

Given a choice between thinking something is an odd coincidence, and deciding that your best friend's entire identity, down to the scar on her chest, has been constructed to deceive you; that she has gotten up every morning and shaved her head just to fuck with you, you are unlikely to choose door number two.

The unusual thing about Stephanie is that she played this out in real life, and duped even her family. Fake cancer is much more common through the Internet, for obvious reasons. Cancer is an intensely lonely experience, and the Internet offers a way to connect with the only people in the world who really know what you're going through. This intense bond of love and support attracts some very broken people, who are the bane of online support groups.

Referring to this elaborate lie as 'some of the details of my treatment' is characteristic of Stephanie. In every communication with her, there's that note of victimhood, of righteous anger at being misunderstood, of being at the immovable center of a vortex of events that are private to her.

"I am working really hard to put my life back together, and though I do not need/expect you to care or understand my life or my "problems", please try to be compassionate or at least patient, I don't deserve to be attacked publicly.There is no need to publish some story about me out of anger and misinformation."

And so I've sat on this story for a while, for fear of writing it out of anger. But everything I've learned about people who fake serious illness makes me skeptical that the world has heard the last from Steph. And I know there are still people in her life who are genuinely sick, and who don't know that her medical drama this year was a fabrication.

Of course, Stephanie's medical journey continues. Shortly before she shut down her cancer blog, she used it to announce her latest test result - NED. Her focus now has moved to getting her physicians to correctly diagnose her with Ehlers-Danlos syndrome, and on treating a chronic heart condition that causes her pulse to race when she stands up. This is something we failed to notice in the time we knew her, but she has posted incontrovertible proof:

Sarcasm aside, I really hope Steph finds a way to get better. I don't think her problems have anything to do with her heart rate, but they are real enough, and can only continue to hurt her and the people who love her most.

Diane, thankfully, is doing well. I don't want to jinx anything by saying more than that. But in a year or so, I want to bake a batch of (real) zeroth birthday cupcakes.

Joo Janta 200 Super-Chromatic Peril Sensitive Sunglasses have been specially designed to help people develop a relaxed attitude to danger.

Tony Burkhart
C: 6148668625
O: 614379DATA

Posted via email from Tony Burkhart