The Myth of Medicine

The concept of the myth has always intrigued me. Not, as it is historically characterized – the fabulous stories of gods and heroes- or the more populist idea of an untruth or counterfactual, but rather as a metaphor. Myth as a way of explaining something that is difficult to put into words, that defies rational explanation: the meaning behind the meaning. Like those Russian nesting dolls, they are multilayered, with understanding hiding within significance which is in turn hiding under context hiding behind appearance… A myth is the meaning of a flower. It is a poem.

And yet it need not be so abstract, so elusive. All of us have myths: they are our stories –who we are, or at least how we have come to understand ourselves. As the famous Swiss psychiatrist Carl Jung said in his autobiography: Thus it is that I have now undertaken, in my eighty-third year, to tell my personal myth. I suppose the challenge, however, is to disentangle the reality from the fantasy… Or does it really matter? And are they both merely different colours of the same myth? Joseph Campbell, the author of many books about mythology, said: “…the only way you can describe a human being truly, is by describing his imperfections. The perfect human being is uninteresing… Aren’t children lovable because they’re falling down all the time and have little bodies with heads too big?”

We are, for all intents, our mistakes. Our foibles. Our myths. And that which we appear to be, we are not –or at least that may not be how we see ourselves. So, for the doctor, which is the more important –because to treat the person, we have to find them first?

I am reminded of a patient I saw  long ago when I was a freshly washed gynaecologist just setting up my practice in an era of militant feminism. Ms Debrashen –that was her title, she insisted, just like mine was ‘doctor’- was a frail-looking eighty year old but dressed in jeans and a sweat shirt that had I’m Talking to You written in Gothic script on the front. I suppose I should have been intimidated, but her smile was so disarming, I couldn’t help but return it as I greeted her in the waiting room. She extended a bony hand to shake before I could even free my own from her chart, and would have led me  down the hallway to my office if I hadn’t stepped in front of her to make sure she went through the correct door.

“So what can I do for you Mrs. Debrashen?” I said, still smiling, as she plonked herself down on a chair beside my desk.

Ms Debrashen,” she corrected me, but not unkindly. “I want you to do a pap smear. I haven’t had one in years, and my family doctor refuses to do one on me.” As she said this, she replaced her smile with a flinty stare that brooked no nonsense. I will be obeyed, it said for a moment, and then relaxed into a more Canadian, please. “I don’t know what got into him; I’ve gone to him for years, but he just climbed up onto his doctor horse and said I was too old.” She sighed theatrically and shrugged angrily. “Too old? Too old to be screened for cancer..?” She shook her head in disbelief. “Does he think I’ve lived long enough already?”

I took a carefully disguised deep breath and let it out slowly. Quietly. I decided to start with a thorough history in case there were some extenuating circumstances. Most cancer agencies throughout the world, and certainly the one in my own province here in British Columbia, have said that there is no indication for continuing to do pap smear screening after the age of sixty-nine. Only if there were recent abnormalities in the pap or as a followup to recent treatment for abnormal cells would it be justified. And of course, then it wouldn’t be screening, per se, but followup.

I took what I felt was a complete history and then, as a tactical decision, asked about her pap smear history at the very end. But no, all of her past pap smears were normal, she insisted.

She sat back in her chair, folded her arms across her chest and stared at me with a rather smug but expectant expression on her barely-wrinkled face.

“The Cancer Agency in British Columbia usually recommends not doing any more pap smears after you turn seventy,” I said, rounding it off for simplicity.

A curiously satisfied smile captured her face –as if she were laying a trap for me, but had to be careful not to give it away. “And why is that, doctor?”

“Well…” I started, not totally comfortable explaining to a woman of her age about the increasing belief in those early years of virology, that the abnormalities of the cells of the cervix registered by the pap smears were in fact the result of some sexually transmitted agent.

Her smile turned into a chuckle when she noticed my obvious embarrassment. “We are not always as we appear,” she said, the merriment evident on her face. “We write our own myths, then wear them, you know… Doctors no less than their patients.” I suppose I must have looked puzzled, because she sat back in her chair as if she were settling in to tell me a story. “Both you and I are Matryoshka dolls, and we only unveil the deeper ones when and if it serves our purposes.” She softened the severity of her latest array of smiles. “You are only looking at one of the dolls –the one you expect to see.”

I smiled the tolerant doctor-patient smile, and started to say something, but she waived it away with a flick of her hand.

“You didn’t ask me much about my sexual history, did you?” I think I blushed and she immediately seized upon it. “Too embarrassing, right? And yet had I been twenty or so, you would have jumped on it immediately when I told you I wanted a pap smear.” I didn’t have to answer –she had me. “But despite my age, and my failing eyesight, I can still read…” She pretended to look out of the window behind my desk to ease my discomfort, but I could tell she was actually watching me out of the corner of her eyes. “The current thinking is that abnormal pap smears are the result of sexual transmission, I understand. Like a disease.” She risked at direct glance at my face and when she could see the astonishment on it, she left her eyes resting there. “So, how would you get a new sexual disease, I wonder?” She let her words dangle for a moment to tease me. “I suspect there are only two mechanisms –either my partner is dallying in another realm, or I myself have strayed into a new kingdom.”

I tried to keep my mouth from falling open -I loved her words.

“But suppose I knew all this, but was unwilling, or afraid to share that aspect of my story with you because it didn’t conform to what I have always wanted to believe about who I am? And what you wanted to believe…” She stared at me for a while with innocent cow-eyes. “Or, on your side of the curtain, suppose you didn’t want to risk offending me because it would be like talking back to your grandmother. Belittling her. Disrespecting her…” She straightened herself in the chair as if she were about to get up. “So you see we are both trapped in our stories.” A huge smile spread from ear to ear as she rose to her feet. “But we’re only trapped as long as we don’t recognize them as surfaces. Clothes…”

She pointed at the examining room. “Let’s do the pap smear, now. I’m going to be late for my friends,” she said, and then started for the door, as I still sat immobilized in my chair.

“I was a Social Anthropologist in my previous life,” she said, looking back over her shoulder and winking. “Just thought you’d like to meet one of my deeper dolls…”

 *

I’ve never forgotten Ms Debrashen over the years. She taught me to question assumptions. Interrogate them. But it made me wonder just how much I can know about anybody. Some of those deeper layers are inaccessable even to the person from whom I’m trying to obtain a history. So overlayered with hope and retrospectively altered memories, some are forever hidden in the myths they have become. Perhaps for clearly displayed symptoms and signs, my medicine can work. I can treat a prolapsed uterus, or an elevated blood pressure, but in a way, that is almost like mending a sweater, or washing a shirt. It is hard to see the skin they hide beneath. And I am at a disadvantage peering through the murky water in which they stand to find something they’ve dropped or hidden. …

She made me appreciate the words of Hamlet when he repudiates his mother for insinuating he is pretending grief merely to get attention:

Seems, madam? nay, it is, I know not “seems.” ‘Tis not alone my inky cloak, good mother, Nor customary suits of solemn black, Nor windy suspiration of forc’d breath, No, nor the fruitful river in the eye, Nor the dejected havior of the visage, Together with all forms, moods, shapes of grief, That can denote me truly. These indeed seem, For they are actions that a man might play; But I have that within which passes show, These but the trappings and the suits of woe.

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The Tail and the Dog: Cause and Effect in Medicine

Does the tail ever wag the dog? Is an issue ever so compelling that cause and effect are reversed? Or at least suspended..? Sorry, I wonder about such things.

I remember reading a book many years ago by the British philospher A.J. Ayer called The Problem of Knowledge. In it he discusses a religious sect that believed its members were either born to go to heaven or born to go to hell. They spend their lives assuming and acting as if they were in the Heaven group, no doubt hoping to influence how they were born -the future influencing the past when you think about it. Effect influencing Cause. The very idea intrigued my teenage brain but I was unable to replicate the switch no matter how I tried. No matter the subterfuge, no matter the wording of the premise, I still ended up with a faulty syllogism.

But my misgivings have decreased in the intervening years and although I’ve never met a member of that sect, I believe I have encountered situations with eerie similarities. Disturbing parallels.

*

“I don’t think you’re really listening to me, doctor,” said the thin, immaculately coifed woman sitting across the desk from me. She’d been talking without interruption for five minutes or so. Sixty-five, and well into her menopause, she had short, greying hair, and a severe, noticeably-wrinkled face. She stared at me as if I had just insulted her and I could see her pale bony hands forming fists and silently massaging her lap as she spoke.

I’d just met her and was trying to understand why she’d been referred to me. “I’m sorry,” I said with a smile. “I was just trying to get a more complete history…”

“I’ve told you the relevent history doctor,” she interrupted impatiently. “You have to learn to listen!” I could tell she was deliberately italicizing words. The sigh that I tried to disguise did not go unnoticed, however, and her eyes sharpened like knife blades and attacked my face. “My doctor assured me you would listen to me.” She sounded almost petulant.

“Well perhaps I was too focussed on background details,” I said to mollify her, then sat back in my chair to indicate that I was, indeed, listening now.

“I have cancer, doctor. Nobody can find it, but I know its there as surely as I know this desk is hard.”

I kept my expression neutral and nodded for her to go on and explain things yet again.

“My sister died from squamous cancer of the cervix and my mother died of adenocarcinoma of the stomach,” she said, the terms obviously well-rehearsed. “And my uncle had some other kind of cancer that nobody could find until he died…”

That was certainly a lot of cancers I had to admit, but I couldn’t think of any obvious connecting factors. Stomach and skin derive from different tissues embryologically but the cervix cancer was almost certainly related to HPV –a sexually transmitted virus. And she didn’t know what type of cancer had killed her uncle.

Apparently satisfied that she had made her point, she straightened up in her chair and folded her arms tightly across her chest.

I nodded my head to encourage her to continue, but she merely slashed at me with her eyes, the skin of her face now tied so tightly I wondered if it would tear. I could see she was challenging me to contradict her. I managed a little smile but I didn’t really feel like it. “What makes you so certain you have cancer, Emily?” I thought maybe using her name might soften her face. “Is it the family history of so many cancers, or some symptoms you are experiencing?”

That seemed to catch her off guard and she unlocked her arms so her hands could wander back onto her lap. “It’s more of a feeling, doctor; it’s hard to explain.”

I sighed audibly and studied her face. It had gradually lost its anger and the skin seemed looser, older. She looked fragile now. Frightened. “Let me see what tests your doctor has done so far…”

“They’re all normal,” she said softly before I could even look at the referral letter. “I’ve been pestering my doctor for several years about my concern…” Emily looked almost embarrassed. “She did both abdominal and pelvic ultrasounds because I told her I was having pain. Then she did a whole bunch of blood tests to check my liver and kidney function but nothing showed up.” She stared at her hands for a moment. “I even convinced her to do a CAT scan of my head…” She looked up at me with a shy little smile hovering about her lips. “Headaches,” she said to ward off a question she could tell I was about to ask. And then she buried her eyes in her lap again. I could almost see her trying to think of something to convince me to keep searching.

“I’m tired all the time and I’ve been losing weight…” But even she didn’t seem convinced. Sad, burrowing eyes peeked out at me from behind deep ridges of skin that had come out of hiding as her anger dissolved. She chuckled half-heartedly. “I’m becoming so neurotic about this that sometimes I wonder if I’m creating a lot of these things out of whole cloth…” Her face brightened at the idiom.

Then she shook her head slowly. “You know, my cancer is almost like a religion: you have to take some of the tenets on faith alone. They don’t make sense, and you’d rather just ignore them, but something makes you go on. You still believe, because there’s something to it, something you suspect is true, even if you don’t understand why.”

I’d never thought of undiagnosed illness like that. I looked through the test results I’d been sent, but found nothing suspicious. No clues. Nothing that even suggested a direction for further investigations. Her pap smears were up to date and all normal; she’d  had a colonoscopy and had somehow convinced a gastroenterologist to investigate her stomach and esophagus. And a dermatologist had done some biopsies a couple of years ago because she had a few moles on her arms and legs. “Would you mind if I examined you?” I thought I’d better ask.

She shrugged and shifted in her chair. “You won’t find anything, but yes. You’re my last hope.”

Given the history, I have to say she had no more hope than I did of finding something. Anything. But I did a thorough examination –I took her blood pressure, I listened to her chest and checked her breasts for lumps. I palpated her abdomen for masses and pain. Lymph nodes filter out infections, but sometimes also tumor cells in the process of spreading, so I even felt for the lymph nodes in her groin to see if they were enlarged. People who run frequently have the occasional small lumps in their groins from incidental cuts on their toes, but she had some that were really quite large and painless, and on one side only.

Curious, I asked if she did a lot of running, or if she’d injured her foot or leg recently. She shook her head. “Do I look like a runner, doctor?” She had a point.

I was puzzled by the lumps, so I redoubled my search for an explanation. What had caused them? The only thing I could find, after doing the usual gynaecological examination, was a multicoloured, dark mole hidden in a labial fold near her vagina. It was on the same side as the lumps.

I finished my examination and asked her to come into the other room when she’d dressed.

“Did anybody mention they’d seen a mole near your vagina?” I asked, when she returned.

She shook her head. “I have moles everywhere,” she said, rolling a sleeve of her sweater past her elbow and showing me her arm. “I think everybody has been more focussed on my cervix because of my sister.” She couldn’t help smiling. “Even my GP just whips a speculum in whenever she’s in the area.”

“What about the dermatologist you saw?”

She chuckled. “He wouldn’t go anywhere near there.” Suddenly she stopped talking and looked at me. “Why? Is there a problem? The other moles were just benign nevi…” She had obviously been reading about her diagnoses.

“It’s an unusual place for a mole,” I said, somewhat hesitantly. “I think it should be removed.”

She studied me for a moment, nodded her head slowly, purposely, while the skin on her face tightened and then relaxed. Her eyes softened and she reached across the desk to grasp my hand.

“Thank you, doctor.”

I must have looked puzzled, because the smile on her face broadened in response.

“All these years…” she said, slowly, softly, and almost to herself. “I knew there was something; I just didn’t know where.”

“But…” I hadn’t even mentioned my concern about malignancy in the mole. If anything, I hoped I’d underplayed it so she wouldn’t panic.

She squeezed my hand. “I’d rather be on a path –any path- than wander around, lost.” She sat back in her chair, almost satisfied at the turn of events. “Our remedies oft in ourselves do lie, which we ascribe to Heaven.”

Wow: All’s Well That Ends Well. I wonder if she’d memorized that for just such an occasion. Perhaps she felt that discovery was tantamount to remedy for her… Vindication. Validation. I also wonder if Ayer would have understood.

Breast and Ovarian Cancer Screening

I am sometimes troubled by the concept of risk. I mean how can we possibly decide whether or not a risk is acceptable? No matter the statistics, if the issue under consideration doesn’t happen, then the risk assumed was acceptable. So far, so good. But of course the converse is also true: no matter how low the risk, if it does occur, well…

Ours is a culture of prediction. Statistics. Guessing. I rationalize buying a lottery ticket by convincing myself that if I don’t buy it, I won’t win -no matter how low the odds, no matter how unreasonable it would be to assume that I would be the one in –what?- ten million who wins the jackpot. Or anything, for that matter…  And no matter that without a year of such profligate spending, I could treat myself to a sumptuous dinner at a good restaurant.

Of course, we all live in hope, and if the lottery ticket funds some worthwhile government project, then it is an almost enjoyable form of indirect taxation. Assimilable because it is freely chosen. Optional.

It is a different proposition entirely if the risk is one to which we do not wish to subscribe but have no choice: genetic defects in a developing pregnancy, cancers, diseases, to name but a few. It is likely to our advantage to interrogate these, if possible. Of course, the question then becomes who should undergo the screening. Only those at the highest risk –those with a family member with the condition, say- or everybody? Just in case.

Screening always seems to be bathed in a soft, warm glow. If you can test, then why not? Just pop in to your local lab and get that PSA; find out if your prostate is betraying you. Demand yearly mammograms as soon as you feel concerned. As soon as a friend or even a friend-once-removed has a cancer scare. And at any age, because you never know…

If only screening was that good; if only all negative tests were reliable –and, for that matter, didn’t have to be repeated at intervals to keep pace with the ravages of Time wreaking its not so subtle havoc on our aging bodies.

Screening for specific inherited genetic mutations for breast and ovarian cancers are the relatively new species of Wunderkind: BRCA1 and BRCA2. These are tumour suppressor genes broadly speaking; we all have them, and they are located on chromosomes 17 (BRCA1) and 13 (BRCA2). But if they contain defects -mutations- they may no longer function efficiently and so be unable to winnow out mistakes such as tumours from proliferating. The mutations are inherited in an autosomal dominant manner and women with these particular mutated genes have a lifetime breast cancer risk of 50-85%. .

So why not screen all women for these genes? Indeed, a recent study published in the Proceedings of the National Academy of Sciences (USA) suggested just that: http://www.pnas.org/content/111/39/14205.abstract

On first reading, it sounds like a reasonable approach. But I’m not so sure. First of all let’s put the whole issue into context. Less than 10% of breast cancers (and <15% of ovarian cancers) seem to be associated with BRCA1 or BRCA2 mutations. And, although even less common, there are hereditary breast cancers associated with other genes, so there might be a false sense of security from testing only the BRCAs.

And then there’s the uncomfortable fact that there have been over a thousand different mutations in BRCA1 and 2 discovered so far. You’d have to know which one to look for. Of course, some populations have more prevalent mutations –so called Founder effects– which might simplify the search. Two per cent of Ashkenazi Jews, for example, carry specific mutations of BRCA1 or BRCA2. And there are other populations carrying unusual founder mutations that might facilitate searches in them as well: people from the Netherlands, Quebec, Iceland, to name a few. Or in still other groups -some families, for example- if the particular mutation resulting in their tumours has been identified, then the process is obviously easier.

The most successful screening is in people with identifiable risks, however. With breast cancer, such things as family history -especially a young age of developing the breast or ovarian cancers (the younger, the more chance there is a risk that can be  inherited), or a family history of so-called triple negative breast cancers –progesterone, estrogen and HER2 receptor negative. Males with breast cancer (yes it happens) are another, albeit infrequent clue to increased risk.

But screening everybody? Let’s get back to risk assimilability. Just what risk is acceptable? Less than 50%? Less than 25%? No risk at all..? Sometimes the answer is easy: a 50-85% lifetime risk of breast cancer if specific BRCA1 or 2 mutations are present is likely not tolerable. But what about the odds if only 2% of the population had that risk, as is the case for BRCA1 and 2 mutations in the Ashkenazim? Or if the chances of those mutations are even lower: 1/800-1/1000 as it is in the general population?

And what if you are not a member of a high risk population, or if there are no cases of breast or ovarian cancer in the family? Should you still be screened? And if so, with what? Remember there are many different mutations possible on the BRCAs -not all of which may result in an increased cancer risk. And there are other genes than BRCA that may play a similar role sometimes. So if you are just concerned that you might be at some risk, or worse, merely curious… Well, its best to remember that we are all exposed to dangers each day that we don’t even think about -and there’s no avoiding them: everything from tripping and falling down the stairs, to slipping on some ice; from having a heart attack, to getting hit by a car crossing the street to shop. We have to put things in perspective: life is a risk, and we are fragile creatures. Remember Shakespeare’s Hotspur in Henry IV:

‘Tis dangerous to take a
cold, to sleep, to drink; but I tell you, my lord fool, out of
this nettle, danger, we pluck this flower, safety.

So, if there is reason to believe there is a risk on the horizon, then it’s best to mitigate it. But don’t go looking for it in places it doesn’t exist.

 

 

 

The Cancer We Think We Know…

In those early, once-upon-a-time days when I thought I knew everything and before humility had forced itself upon my stage, a haggard middle aged woman named Mary walked into my office a week early for her appointment. It was in the young days of my career and as it happened, a patient who was scheduled for that time had not shown up. So, I agreed to see her.

She had a wild look in her eyes, and they immediately pinned me to my side of the desk. Well-groomed despite her jeans and tattered grey sweatshirt she could have been mistaken for someone ten years her junior. But she had been referred by a family doctor that I, of decidedly conventional western medical training, had come to associate with fringe issues -homeopathy, hair analyses, colonic cleansing and the like- so I prepared myself for sifting through a ream of details I could not hope to understand.

“I don’t feel well, doctor,” she started, her voice as serious and worried as her face. “I’m 41 and for the last six months I’ve had a constant ache in my lower abdomen on the left side -my pelvis, actually. My periods are light, non-painful, and as regular as a calendar with no intermenstrual spotting; I have never had any pregnancies, operations or illnesses. I’m not on any medications, don’t smoke, and have no allergies. In fact, you’re the first specialist I’ve ever been referred to.” She managed a brief smile. “I had my family doctor order an ultrasound 4 or 5 months ago months and it showed a thin, normal appearing endometrial lining of the uterine cavity, but a 4 cm. complex cyst on the left ovary. A repeat ultrasound last month found it was still there, albeit somewhat smaller.” She hesitated briefly and then added: “I’ve had this kind of cyst before but usually without symptoms, and the cyst is always  gone by my next scan.” She looked at me for a moment and finally said, “So now I’m worried, of course.”

I have to admit I was a bit taken aback that she’d already answered most of the questions I had intended to ask, so I just sighed when she appeared to have finished her summary. “You seem to know your way around medical words…”

A smile appeared briefly on her lips, but one that couldn’t disguise her anxiety. “I have a PhD in pharmacology and am doing some research at the Cancer Agency so I guess I’ve picked up a few words…” She was sitting bolt upright in her seat, but the expression on her face said she wasn’t finished so I waited for her to speak. And anyway, I was running out of questions to ask.

“I’d like you to take everything out,” she said, suddenly leaning forward over the desk.

“Meaning..?”

“Meaning uterus, tubes, ovaries… everything!” She took a deep breath. “Look, I’m really afraid that all these cysts I’ve been getting on my ovaries are telling me something. There’s not a shred of cancer in the family, but I have this feeling about my ovaries that I can’t explain: I know  there’s cancer in one of them. Don’t ask me how I know it -I just do. And it’s only a matter of time before it becomes obvious in one of the ultrasounds… maybe too much time.

“I don’t want any kids; I’m not in a relationship; and I’m willing take hormones…” She blinked. “But I can’t take cancer.”

I’d been writing all this in her chart, but I put down my pen and looked at her. “Do you mind if I examine you and then we can talk about it?”

She agreed with a shrug of her shoulders. “Okay, but don’t tell me the recurrent cysts are just the result of anovulation…”

I had to smile at that one: it was precisely what I had intended to tell her. Anyway, I couldn’t feel the cyst and I told her so when we returned to the office after the examination. She seemed surprised.

“Are you sure? I mean I’m not questioning your findings, but why would it just disappear when it was still there last month? And a complex cyst as well,” she added, obviously aware of the possible ramifications implied by the term and searching my face for answers.

“Would you mind if I repeated the ultrasound?” I could see my findings had not reduced her concern in the slightest. “And maybe I’ll order some tumour markers, just in…”

“They’re usually not very helpful at my age.” The words seemed to escape her mouth before she could stop them, so she plastered an embarrassed smile over her lips. But she did agree to the repeat ultrasound.

*

I’m afraid I forgot about her until she returned a couple of weeks later, after the ultrasound.

“Well, it was normal,” I said as soon as she sat down. “But I suspect you already know that.”

She nodded. “I still want you to operate, though.”

I sighed, looked at the ultrasound report again and then at my notes in her chart. “But that left ovary is completely normal in appearance now -both of them are. The uterus looks normal… everything  looks normal.” I riffled through the few lab tests I’d managed to convince her to take. “Your periods are normal, so I admit that it makes non-ovulation as a cause for the cysts less likely, but the tumour markers are normal, the…” I glanced at her face. “No, I’m not putting too much reliance on them, but at least they’re reassuring as well.” I could see her fidgeting in her chair all the while staring at me. “Look, I can’t just take everything out in a woman your age without some good reason.”

She crossed her arms and a stern expression captured her face.

“So, how about we consider a couple of options?” I suggested, looking her in the eyes. She blinked, and I took that for an agreement. “The first is that we repeat the ultrasound in, say, six months and then…”

She shook her head firmly, and stared at me. “What’s the second option?”

“We get a second opinion -a female gynaecologist, maybe. If she agrees, then maybe she can do the…”

“I chose you, not another doctor,” she said slowly. “If the second doctor -the female– agrees, will you do the operation?”

I have to admit I felt a little flattered by that, and I suppose it’s why I agreed. But by the time she got a reluctant agreement from the other doctor and I was finally able to book the surgery, it was six or seven months later.

I went to see her on the ward the day after the surgery. “Everything went well, Mary. The uterus and tubes appeared normal, and the ovaries were both outstanding-looking citizens.” I don’t know why I said that; I suppose I was trying to make her realize that I was happy with what I’d seen.”

“When will we..?”

“Get the pathology report? It’s probably going to take about a week. But I’m not expecting any surprises, you know,” I said with a smile as I gently squeezed her hand.

But her eyes were wiser than my words. “Now that my ovaries are out, that bad feeling I used to have is gone; you got the cancer. I can tell…” Her voice faded as she closed her eyes and drifted into a narcotic-driven sleep.

*

I called her to come in to the office as soon as I got the report.

“It was cancer all along, wasn’t it?” she said in a soft, worried voice even before she sat down.

I nodded slowly and reached  across my desk for her hand. “But it was in the uterus, not the ovaries…”

Her face softened, and her shoulders relaxed; her response was a statement rather than a question: “That’s a better cancer to have, though, isn’t it?” Then she smiled and squeezed my hand this time.

 

 

 

What’s in a name… Cancer?

Words are important. Quite aside from meaning, each has its own shade, its own temperature. Rose calls forth a mood, an emotion, an expectation that is quite distinct from, say, daisy. Words are little coloured post cards that tell stories and paint pictures; each word elicits a miniature portrait in the brain. Together, they tell stories, individually they hint at direction: plot.

We must never underestimate words. Strung together, they are greater than the sum of their parts; considered separately, they are the clothes of narrative: the shoes and socks so necessary for travel. Science, however -more specifically Technology- has travelled so quickly along the route, it has left words trailing in its wake. Unable to keep up with the pace, and often frazzled at the pace, words, tired and dishevelled, have often done double duty: the same old articles of apparel keeping up appearances and providing some continuity for those watching breathlessly from the sidelines. A narrative is difficult to follow, let alone understand, if there are no recognizeable links with what went before. Even neologisms build on standard and widely understood words or phonemes: retrologisms, as it were…

I was therefore intrigued -although not altogether surprised- at the e-publication of a paper to be published JAMA Intern Med ( http://dx.doi.org/10.1001/jamainternmed.2013.8405 ) that dealt with how the use of the word ‘cancer’ influenced the way patients made decisions about their treatment options -even when the condition they were asked to consider was pre cancer, not actual cancer. Just that word, in whatever context, was enough to alter their choices. In many instances -especially in medicine- the words we utilize are maladapted, anachronistic and, in fact, misleading…

In the days when cancer was, by and large, only detectable as a fait accompli, who would have thought it necessary to create a word describing a ‘not-quite cancer’, or a ‘not-yet cancer’? And yet there are precedents; although in not quite the same context nor perhaps an entirely appropriate analogy for a sequentially evolving concept, the Inuit of northern Canada have always used different words for different types of snow, for example. To a southerner, snow is snow; it all seems the same to an inexperienced observer, and not worth the picayune divisions. And yet the unique words help identify each type as separate, and behaviourly distinct… Often temporally distinct, as well.

I see this confusion not only among my patients but even with some of the non-specialist doctors who are confronted with a pathology report containing words like adenocarcinoma in situ, or perhaps just carcinoma in situ describing the biopsy of a cervix from a woman sent to my Colposcopy Clinic because of an abnormal pap smear. The cancer (carcinoma) word is there for sure, but some how the suffix in situ -meaning not invasive, or ‘contained’ is missed. And even if it is seen and deciphered, the phrase seems to imply that it is in fact a cancer that has been serendipitiously discovered before it has spread… although it is not! But so emotionally charged is the word -the idea of a cell, a process out of control- that it automatically elicits such a response; it’s almost involuntary: the quick withdrawl of a finger from a flame even before the brain has had time to process the sensation. A triumph of atavism over intellect.

While not necessarily, nor even predictably so, we like to think of cancer as having a precursor. In other words, we like to think there are early stages on its path to malignancy where the cell is not yet out of control and where this identification may allow modification -or elimination- of its otherwise inexorable progress. The explanation often chosen is that in its normal state, a cell is controlled by a series of checks and balances: how it grows and how quickly; how it differentiates and under what circumstances; how it adapts to changing conditions; how and when it dies and under what influences or instructions, and so on. If that control is lost -or even modified- the cell will undergo changes accordingly. And thus, the malignant transformation theory goes, at the beginning of the journey it is under control, and at the end of the road, out of control. So, the trick is to find it as it travels along that route -before it arrives at the other end.

And just as the destination is not the same as the stops along the way, those intermediate steps should not have the same names. If I start in Vancouver and end up in Calgary, why should I call Kelowna, or Banff pre-Calgaries? No, it would be too confusing, not to say misleading. They are what they are… And what they are not is Calgary.

We need different words, new words, words untainted by the whiff of dread, and unsullied by the expectation of disaster. “What’s in a name? That which we call a rose by any other name would smell as sweet.”… Really, Juliet? “The lady doth protest too much, methinks”.

The Miracle (part 2): a woman’s story in 2 parts

“Emily.” It was the doctor’s voice, and he was leading her into a seat in his office as if she were an old lady. “Emily, it’s good to see you again…” his voice trailed off as he inspected her. “But you were supposed to have come back to see me a month or so ago, remember?”

Why was everybody always asking her if she remembered something or other? She was here wasn’t she? And besides, he knew she couldn’t keep running back to him with every little complaint until she was sure.

“Now remember last time you were in, you said you were having some…ah…” He referred to a folder that lay open on his desk. Couldn’t he remember, she wondered? It hadn’t been that long ago. “You were having some trouble with your bowels,” he continued as if he hadn’t really forgotten. “Constipated, bloated, vague discomfort in your pelvis…”

‘Vague discomfort’? Had she really said that? She became aware that he was drumming his fingers on the desk. It was all very funny, really. He was obviously expecting her to say something but all he would do was look at her quizzically over the bridge of his glasses. His straight, mouse-brown hair was too long for his thin body, she thought. And he was wearing the same creased grey suit as last time. What kind of a doctor only owned one suit?

Finally he ventured to speak again. “What’s been happening lately?” But she only smiled. “Bill told me you’ve been quite sick…” Again the look, and again she refused to be manipulated. “He said you’ve had some more pain and have started to vomit.”

She shrugged. Damn that Bill! This was all supposed to be so different. Why did Bill care anyway? He was never around much and even when he was, he was merely there. But so was she -trees in a meadow: untouching, indifferent, one or the other always in the shade.

Doctor Brock looked annoyed and was having trouble disguising it. “Bill said you wanted to see me Emily.”

She stared at the open file in front of him filled with writing in blues and blacks. Why would he use different colours, she wondered? And some things looked as if they had been underlined; this puzzled her as well. She didn’t think she’d ever told him enough to underline. She blinked, trying to resolve whether or not the line went through or under a sentence. Even doctors made mistakes. The chart was too far away to see clearly, however, so she leaned forward slightly, and as she did he cleared his throat.

“What did you want to see me about Emily? You’re still feeling unwell, aren’t you?”

There he goes again, she thought -just like Bill: he hadn’t asked, he’d stated -accused, actually. As if feeling unwell was wrong -no… expected. She was amazed at the stupidity of the man. How could she confide in someone who couldn’t understand how she felt about it all? She should have gone to a woman.

He sat back in his comfortable leather chair, determined to wait her out. Why was he so stupid? No, obtuse; she knew he wasn’t stupid exactly, just unable to relate to a woman’s needs at a time like this. She stared at him, confronting him silently with her unblinking accusation. She needed someone else; she was sure of it.

He coughed at her quiet threat, as if the noise might dissipate it -make her blink first, maybe. But she was determined. “I’m sorry doctor, you just don’t seem to understand.”

The sudden flurry of words made him jerk forward awkwardly in his chair. She got up to leave. “But you haven’t even told me what’s wrong, Emily. How can you expect..?” She was through the door before he could finish.

“It’s a woman doctor I need,” she told Bill in the car. He may have heard, but he didn’t turn his head or even shrug; it didn’t really matter anymore.

*

Dr. Heath was very young -something the Yellow Pages didn’t mention. But at least her door had the usual trappings of confidence: a sedate, cream-on-plastic plate with the requisite number of letters after her name -a few extra, even, as if to invite entry.

As soon as she got inside, though, Emily realized she had made a mistake. It was cheery enough, with heavily carpeted floors and a large double-glazed window with a view of the city; the plants were nice, if a trifle under-watered; and there were pictures on the walls of babies: babies with hats, babies in diapers, babies at breasts… It wasn’t the office that bothered her. It was the age of the patients that seemed strewn about like clothes: teenagers -all of them. Some pregnant, some with skirts up around their waists -a rogue’s gallery of young people, all staring impudently at her as she crossed self-consciously in front of them to the front desk.

The receptionist couldn’t have been much older, and as Emily gave her name she thought she caught a fleeting smirk that never quite surfaced. “You’ll have to fill in this form for the doctor, Emily. And I’m afraid she’s running a bit late today.” It wasn’t an apology, simply a statement. Take it or leave it.

The form was simple enough: allergies, major illnesses, medications and the like. Nothing too personal -she liked that. The doctor, however, was.

Dr. Heath was a pleasant little thing of about twenty-five, blond, smartly dressed and with eyes that seemed to hunt like spotlights when they hit. She fastened them on Emily. “My nurse mentioned something about you being late for your period, Emily,” she said noncommittally.

Late? That was a laugh. But Emily nodded. “It’s been four or five months now.”

The doctor didn’t seem surprised -or at least her eyes were calm. “Were they regular before?”

Emily closed her eyes impatiently. Of course they were regular. What was she getting at? She took a deep breath. “Yes.” And then she opened her eyes and stared out the window.

“I see,” said the doctor. But Emily didn’t believe her. Her eyes were too steady to be real; nobody was that calm. Dr.Heath wrote something in the chart then looked up again. “Any other symptoms?” She actually smiled when she said that, but Emily was not taken in.

“Maybe you should just examine me, doctor.” It was a simple statement, made calmly, quietly, but the doctor’s expression immediately changed.

“I’m afraid I’ll need to know a few more things about you before we get to that.”

“I’ve filled in the form, so it should all be in there, doctor,” she said confidently. You had to get control of these things early.

Dr. Heath stared at her intensely for a moment, obviously deciding what to do, then shrugged and pointed to a narrow door that Emily had not noticed when she entered. The doctor looked smaller now -pale even. “You’ll find a gown on the table in there. Please undress from the waist down. I’ll be there in a moment.”

It was long moment and Emily could hear voices through the door, but not clearly enough to understand. The doctor’s though, sounded excited, agitated. Had she made the doctor uncomfortable? Emily thought about it for a moment and then rejected the notion: she’d been civil. They were both adults.

The examining room was cold but she stripped to her underwear and sat on the examining table huddled under the flimsy gown. Soon it would be over. Should she tell Bill? He would eventually find out, she realized, but could she count on his support? She chuckled at the thought.

Dr. Heath suddenly appeared at the door, smiled wanly, and asked her to  lie back. “Where does it hurt, Emily?” she said softly.

Emily lifted her head. “Hurt? Who said it hurt?”

The doctor straightened her shoulders a little. “I’ve talked to Dr. Brock.”

“You had no right…” she started, tears forming in her eyes. “What I told him was… just between us.” But she realized how silly that sounded and looked down at her feet.

“Emily, Dr. Brock was concerned. I’m concerned.”

“You had no right,” she repeated, fighting back a sob. “I suppose my husband talked to you as well…” The doctor nodded. “You’re all trying to make it all so… so abnormal,” she said grabbing for her clothes. “Can’t any of you accept it for what it is?” Her cheeks were wet now.

Dr. Heath didn’t move. “What is it Emily?” she said in a soft, sad voice. Emily glared at her and finished dressing. “What is it?” she repeated and grasped her shoulders.

Emily broke free and forced her way past the doctor. “A miracle,” she said between sobs.

“Emily!” There was no mistaking the tone this time. “Emily I’ve talked with your doctor…”

She was through the door but she stopped by the window, near the doctor’s cluttered desk. The cars had their lights on now and it was raining; the sky barely cleared the tops of the buildings. Why was it always like that, she wondered.

“Emily, please listen to me…”

But she just shook her head. Tears rolled gently down her cheeks and she made no effort to wipe them away. Why should she listen? She was living with the proof right here in her abdomen. Her hand reached involuntarily for the palpable swelling growing quietly inside. There. It moved again; she was certain it did. Nothing they could say or do would convince her otherwise. Perhaps another doctor… Yes, that was it, another doctor -an older, more experienced one this time.

The Miracle (part 1): A woman’s story in 2 parts

It was still there, no doubt about it. She patted her stomach warily, as if she were afraid it would go away with too critical an examination. But it was real -or as real as any present could be inside a box- hidden away, untouchable: Schrödinger’s cat…  Some things required faith; not everything in life was a punishment.

Up till now it had been a draw. Meaning, purpose, goal -whatever one called it- was a childhood memory, or maybe a fantasy. The fabric of her life, like an often-mended blouse, was intact but barely recognizeable. Even Bill, who had promised so much at first, had not so much the power of a colored thread in any dream she wove. Nothing distinguished him from a thousand others. He was like a picture that had hung above the bed for years: describable in an instant, but noticed only when missing. He added nothing to her life, subtracted nothing. Were other men the same, she wondered, looking vacantly around the room?

She was sitting in the front room – the back room, actually, since it looked out over an ill-kept back yard of aging trees and spotty grass. It was raining as usual and the rotting boards of the patio seemed to stare blankly at the clouds like old men waiting in their beds to die. The furniture was the same, she thought, itemizing it one by one as if she were still a stock clerk after all these years. A china cabinet made of some cheap wood by her grandfather a century or so before, stood at fragile attention across the room, arthritic and brittle with age. She ticked it off mentally with a sigh, noticing the lack of dishes on its shelves. Like her, it merely occupied space.

A lot of the furniture was like that, though -the couch on which she sat, for example. Even looking at it, she was hard-pressed to name the colour. Its utter banality saved her from the need to classify it as to style or pattern. It merely was; it existed, and was allowed to, simply because it was there. No other reason. Nor did the coffee table distinguish itself, except that it was not the floor, nor was it the same color or texture as the blue-green rug. The room was an occupied space; it was not the kitchen, it was not the bedroom… The room and what it contained -including herself- could best be characterized by what they were not; some inscrutable pique of nature had defined them all by inference only.

Maybe that’s why her life had never changed: Nothing is difficult to rearrange. Until now, that is. She allowed herself a little smile and glanced at her unseen present, her secret. For a moment in her mind, it seemed to glow, the colors expanding and wavering with her breath. What did they call those color-filled boxes you held up to the light and turned? Kaleidoscopes? In the grey, unpolished world she now had a kaleidoscope of her very own.

A brief pain lanced though her lower back, followed by a burning sensation in her groin. Not yet, she thought, clenching her fists tightly against the jolt. But this wasn’t the first time she’d felt its complaint. There was also the pressure -the constant, dragging pressure that made her feel as if all her pelvic organs were going to drop out- and the bloating, to the point of nausea. All to be expected however, and she smiled again, embarrassed by her sudden wealth.

It had been a couple of months since she’d begun to feel different. At first, only the pressure and discomfort after eating -nothing major, and really only noticed because she had nothing else to notice in her life. Well, that wasn’t quite true: Bill had seemed more attentive to her. He said she was losing weight, not eating -that she was changing on him. Bill didn’t like people to change because then he never knew what to expect. But what did it matter what he thought? She could see where she was gaining weight… She was different, and that was that.

Bill seldom confronted her with the change, but she could tell he was concerned. Communication was not something he entered lightly and he often changed his mind on the brink of a sentence. Recently he had been trying to fathom the problem from a distance with inquisitive glances and a puzzled look on his face -attempts, in other words, to make her admit there was something wrong. Admit? What he really wanted was a confession. As if she had done something wrong by not being the routine, predictable Emily. She shrugged and sighed inwardly. Maybe if he just talked about it… Or about something: the weather, the supper, her hair, the time of day -anything. Maybe then it would be alright… Or a least better… But of course in a grey and toneless world, words are just passing clouds, indistinguishable after a while from everything else.

She was interrupted in her reverie by Bill -not the man (he seldom came into this room), but the voice… the command, rather. Ever since she had known him, even his questions had been commands garnished over. Then, at least he had tried to disguise them; now he seldom bothered.

“Emily, what are you doing? You’ll be late for the doctor.”

“In a minute, Bill.” Oh how she hated him sometimes. Hated? Was that true, or was it just painful when he surfaced abruptly from the background where he lived? Possibly where they both lived. Until recently she couldn’t have said where she lived, but of course all that was different now.

She rose slowly to her feet, dizziness stirring the room like pudding -but it didn’t last: things like that are not designed to last. Markers -that’s what she called them- events that rimmed a change of state: up, down, standing or sitting… She did not dwell on the thought, and the dizziness passed as quietly as it had arrived.

She ventured a few tentative steps across the carpet but towards the window and not the door as she had intended. A movement outside had caught her eye and she was captured by the damp, leaf-strewn lawn. A four o’clock wind was mindlessly poking at the balding trees that stood like a living fence around the yard. They, too, were brown, but not what had attracted her. There was also the patio, rambling and broken, where a chair leg had teased the ancient boards apart. It was brown as well. And so was the grass under the rhododendron bush that squatted like a disheveled toad in the middle of the yard, untidy, unadorned… But it was the lawn’s problem, not hers.

She sighed and looked away. But not soon enough; there, almost hidden under a yellowed leaf beside the railing of the decaying deck, she saw it. Only the tail was visible now, but a smeared, red line marked its erratic trail. While she watched, the tail twitched once. A cat, brick-still on the rail above, studied the movement for a moment, then pounced. Emily quickly shut her eyes as a wave of nausea rolled over her.

“Emily! What’s keeping you, woman?” This time it was the man who entered the room. Balding and short, he kept fingering a caterpillar-like moustache on his marshmallow face. He looked out of place in the room -like some waxen, glistening beetle that hadn’t yet scuttled out of sight. His head was perspiring and the dim light from the yard speckled it with tiny shadows. “Emily, I thought I asked you to hurry up!”

She looked at him -or rather, through him- like she had the window. “What? Oh, the doctor… I’d forgotten,” she lied.

He stared at her with unreadable insect eyes. “Forgotten?” he hissed, “You asked me to make the damned appointment in the first place. Christ woman..!” He stomped his foot in anger, but to her the gesture and the words were empty. “I can’t understand you,” he sputtered, choking on his saliva. “For a month you’re sick, and when you finally decide to do something about it besides complain, you forget.”

“I’ve never complained,” she interrupted softly.

His face grew red, and he paused long enough from fingering his moustache to wipe his forehead with his sleeve. It was a sloppy habit, she thought, and blinked twice.

“No, you never complain!” he continued. “Not you. Not in words, anyway; words I could handle. No it’s all the other things: the sighs, the groaning at night… No, you don’t complain, you torment.”

It was meant to be cruel she realized, but it had no effect. The words just disappeared into the cracks of the floor hitting nothing: water sucked down a drain.

He turned abruptly and left the room. “I’ll be in the car,” he shouted at the hallway, then vanished as if he’d never been. She could hear him fussing around by the front door, banging things or dropping them in frustration, but he might as well have been outside for all it mattered to her.

The tail was gone now, she noticed; so was the cat. She shuddered at the hidden, unfair struggle going on somewhere outside, but even as she did, it occurred to her that it probably wasn’t like that at all. Life and death likely snuck past her each day unseen… Like her life.

A sudden spasm of pain shot through her pelvis leaving her nauseated. And a horn somewhere continued its insistent complaint. She smiled as the pain eased slowly from her back. Unseen could be a wonderful thing: it was a gift not yet unwrapped.