October 10, 2010 - A Doctor Who Gets It

Betsy de Parry, a lymphoma survivor and blogger whom I frequently cite in these pages, has published a truly remarkable letter from an oncologist and specialist in rare adrenal cancers, Dr. Gary Hammer. It’s an open letter he wrote to cancer survivors everywhere, in response to an open letter to doctors Betsy had written a few days before.

Dr. Hammer notes in his letter that virtually all his patients die under his care. That’s because the prognosis for adrenal cancers is generally poor. The best he can promise his patients is to buy them a little time, and to enlist them as allies as he and his colleagues chip away at the frustrating search for a cure.

It takes a very special doctor to persevere in medical practice under such circumstances. At the very least, a “thick skin” would seem to be an emotional necessity – surely, not easy to maintain alongside a pleasing bedside manner. (I have a feeling, though, after reading his letter, that Dr. Hammer is one of those rare individuals who can integrate both.) The type of medicine he practices also affords him a rather remarkable vantage-point from which to view the experience of patients living through their last days.

Both letters are worth reading in their entirety, but I’d like to share with you, here, a selection from Dr. Hammer’s. It shows he’s truly been listening to his patients, in the deepest sense:


“Perhaps the most frightening words a person might hear in his or her lifetime are ‘You have cancer.’ This truth revealed fractures our reality. It challenges our relationship to our inner world, forcing us to re-evaluate who we are.

However, embedded within this experience lived is a gift. The little-known secret is that the gift is not just for the afflicted but also for their entire circle of relationships, including spouse, children, friend and caregiver alike. The only requirements to receive this unique communion: vulnerability and presence.

As a physician engaged in the care of people with a particular rare cancer – where those under my care almost always die – I am thankful for the sharing of truths that have been unveiled to me by these men and women in this, their most vulnerable and internal sanctuary.

In this place of finding themselves dying, brave people have let me into their space where three truths seem to be unveiled again and again as defining gifts of sacredness. These truths can be embraced as three reflections of the word ‘presence:’ conscious engagement, the experience of present time (the razor-sharp now) and the gift of emotional authenticity.

Through these patients, I have come to an understanding that if we are fortunate to actually have time while we are ill, and we are brave enough, what happens as our vanity, our beauty and ultimately our physical identity is stripped away is that we are granted a chance to become our own sacredness — as it becomes all that is left.

Sadly, when people die suddenly, they rarely have the luxury of such time, such a place. But equally as tragic is that most folks never risk to venture to this vulnerable place while living when they do have time. Having our own death close by in life — be it through illness or conscious reflection — sharpens our internal lens by stripping away all that is not present, all that is not presence.”

Based on my experience, I’d say that having a deadly cancer is something like getting off the local train that is the normal pace of life and boarding another. The new conveyance is a bullet train that bears us on rapidly, roaring through many of the normal stages of adult development without stopping, to a windswept, elevated platform overlooking a barren plain – the place where we may contemplate our own death. It’s the terminus, the end of that particular line, a station most people will never glimpse until they are far advanced in years, if at all (those who die suddenly may never see it). We who have wrestled with the cancer angel are familiar with that stark vista, and also know how bewildering this headlong, high-speed journey can be.

Even more bewildering is the return trip. It happens in the flash of an eye. If we’re fortunate enough to see our disease go into remission – or to enter into the extended watch-and-wait “treatment” that’s really a non-treatment – we may suddenly find ourselves seated again on the lurching local milk-run. Around us are our fellow-passengers, snoozing away to the soft, rocking motion of the train. We look around the cabin and at first see only others who are sleeping.

But wait, over there, across the aisle: was that a movement? It was. Another person awake. She and I make fleeting eye contact. Yes. It’s someone else who was on the express, someone who knows.

And what’s that, several rows ahead? Someone else is stirring. A passenger yawns and stretches before he turns around, idly scanning the passenger compartment. He gives me a brief nod of recognition before laying his head back down on the shoulder of his sleeping wife, trying (perhaps in vain) to join her in slumber. Another fellow-traveler. When he closes his eyes, does the stark vision of that empty, elevated platform, surrounded by barren, moonlit prairie, rise up in his imagination?

It’s a wonderful thing to encounter a physician who’s taken the time to know his patients in such an existential way, to try to vicariously experience something of what we’ve been through.

Blessings to you, Dr. Hammer. May your tribe increase. And “thank you” to Betsy for initiating this fruitful exchange.

August 23, 2010 – What the Biograph Knows

Last Tuesday, I went for a PET/CT scan. This is perfectly routine: I get scans at intervals, alternating between the PET/CT and a regular CT scan with contrast. It’s how Dr. Lerner and I figure out if we’re still watching and waiting, or if it’s time to take a more proactive stance.

A year or so ago, the testing interval was every 3 months. Now, the doctor has spread the schedule out to every 6 months. That’s because my lymphoma has been so lackadaisical of late – a good sign.

The scanner lives on the back of a tractor-trailer truck pulled up to a loading dock at Jersey Shore University Medical Center. It’s there a couple days a week. What hospitals it visits the other days of the week, I’m not sure.

Here’s what I recall of the experience...

I’ve been through this enough times to know exactly what to expect. Pin-prick on the finger-tip, for the instant blood test to make sure I’m not diabetic. IV needle inserted in the crook of the arm, into which the technician injects a hypodermic-full of liquid out of a thick, cylindrical, silvery-metal case (that’s lead casing, to protect the technician from the radioactive glucose solution I get to have coursing through my bloodstream for the next several hours – lucky me). The IV needle comes out right after that, then it’s 45 minutes’ R&R in a comfy lounge chair. During that time I’m instructed to sit quietly, even nap if I want. Only then am I ready for the scan.

That entails lying flat on my back, perfectly motionless, for 30-45 minutes, arms extended straight back over my head. I know from experience how the muscle-pain that develops in my arms, after 20 minutes or so of this unnatural posture, is the worst part.

Just before climbing onto the narrow table that will slide me through the machine’s donut-hole, I notice an inscription on the device: “SIEMENS Biograph 6.”

The manufacturer, of course, is Siemens, the medical-equipment giant. Biograph 6 is evidently the model name and number.

Ya gotta think of something while you’re lying on your back, trying to keep from counting the minutes, so I start musing on that word, “Biograph.” Obviously, it’s a trade name dreamed up by the Siemens marketing people. “Bio” means life, and “graph” means writing. Put the two together and the name suggests a chartful of medical data – which is, essentially, what this high-tech test produces. Makes good marketing sense.

It also calls to mind, of course, the word “biography.” Coincidentally, during the 45-minute rest period before my scan, I started reading a biography: The Most Famous Man in America: The Biography of Henry Ward Beecher, by Debby Applegate. Her book’s a fine example of the genre: a collection of facts about the famous preacher’s life, but also so much more than mere facts. The facts are presented so as to conjure up the real person, as though he could step right off the page.

That’s what a good biography does. Yet, I wonder as I lie there: What is it that a good Biograph does?

I suppose the thing that’s most important to the medical community is the way its visioning software slices and dices my body into thousands of paper-thin segments, which it then analyzes, looking for the rapidly-metabolizing tissue indicating a possible malignancy. (I don’t feel a thing while all this high-tech butchery is going on, by the way. Except for the pain from my hyper-extended upper arms, I could probably fall asleep there inside the donut-hole.)

Likewise, a biographer like Debby Applegate gathers and arranges a whole lot of facts about her subject’s life – scanning it, as it were – before sitting down at her word processor. Once she starts to write, though, her goal is not to simply pour out the unedited facts, performing the historical equivalent of a data-dump. No, the biographer’s aiming to put Henry Ward Beecher back together again, so he arises in the reader’s mind as a 3-dimensional personality.

I heard Debby give a talk about her book at the Presbyterian Historical Society Luncheon at our denomination’s General Assembly last month. She spoke of Beecher in a way that intimated he’d become very real to her. I recall her making an offhand remark about how she’d been “living with” Beecher for quite a number of years, as she researched and wrote the book.

The similarity of names makes an unlikely association in my mind to the Marx Brothers’ film, Go West, in which Chico and Harpo are walking up and down a railroad platform as Chico repeatedly calls out, “Mr. Beecher, we’re here to meet you!”

“Are you looking for John Beecher?” asks a serious-looking businessman in a suit. “I’m John Beecher.”

Chico’s eyes narrow suspiciously. “We don’t recognize you, do we, Rusty?” (Rusty is played by Harpo, who emphatically shakes his head “No.”)

“Naturally you don’t recognize me,” sniffs Beecher, officiously. “We’ve never met.”

“Then how do I know it’s you?”

Typical Marx Brothers lunacy.

Does the Siemens Biograph know it’s me? Having sliced me up into a thousand pieces (or, more precisely, into millions of little ones and zeroes), how will it put me back together again?

The technicians running the scanner couldn’t be more cordial or professional, but even so, the whole process is designed to produce a numerical output that falls far short of describing who I really am.

Following protocol, the technician checked my hospital bracelet as I came in. It was his way of answering Chico’s question from the movie: “Then how do I know it’s you?”

Yet, he doesn’t really know me. Nor will the radiologist who reads the results and reports them back to Dr. Lerner. To the inquisitive electronic eye of the Biograph, I’m just a biological system, nothing more.

There’s a famous scene in Shakespeare’s The Merchant of Venice, in which Shylock muses on the alienation he feels as a Jew, living in a Christian country:

“I am a Jew. Hath not a Jew eyes? hath not a Jew hands, organs, dimensions, senses, affections, passions? fed with the same food, hurt with the same weapons, subject to the same diseases, healed by the same means, warmed and cooled by the same winter and summer, as a Christian is? If you prick us, do we not bleed? if you tickle us, do we not laugh? if you poison us, do we not die? and if you wrong us, shall we not revenge?”
[The Merchant of Venice, Act 3, Scene 1]

One of the things we cancer patients appreciate the most is when someone treats us as a real person, not a mere medical case. I’ve been fortunate to get that sort of response from Dr. Lerner and from most of the people who’ve cared for me, over the past five years or so of tests and treatments.

We’d be foolish to expect that sort of thing from the Biograph – although, as we look to our fellow human beings who wear the lab coats and the nurses’ uniforms, is it out of line for us to hope for a little personal interest in our biography?

August 3, 2010 - Clinging to the Tail of Possibility

On vacation in the Adirondacks, I read a remarkable article from the August 2 New Yorker magazine. I was tipped to the article by my brother, Jim – though I later learned from Claire that members of her hospice team have been passing it amongst themselves, causing lively discussion in their weekly staff meeting.

I think “Letting Go: What should medicine do when it can’t save your life,” by Atul Gawande, may set off at least as much debate as his June 1, 2009 article, “The Cost Conundrum: What a Texas town can teach us about health care.” (which I discussed in a July 20, 2009 blog entry, “Where Not to Get Sick.”)

Gawande is a general surgeon who practices at Boston’s Brigham and Women’s Hospital, and who teaches at Harvard Medical School. He’s operated on a lot of cancer patients. Some benefitted mightily from his expertise, and others’ last days would likely have been more tolerable without the invasive procedures. Yet, hindsight is always 20/02, and ahead of time it’s always a tough call.

It’s his physician’s perspective that leads Dr. Gawande to question the lack of agreed-upon procedures for end-of-life decision-making in America. For a country with some of the most advanced medical care in the world, our practices in this area are remarkably haphazard.

Gawande points out that the financial costs of successful cancer treatment can typically be graphed as a bell curve: there’s a steep climb from the time of diagnosis to a sort of plateau, as very expensive scans and treatments are deployed. Then, there’s a drop-off in costs as the patient recovers. In the case of patients whose treatment is unsuccessful, the frequent result is half a bell curve. We throw some very big money at solving problems that are – statistically speaking – unlikely to be solved, sending the line of the graph soaring upwards. Because it’s a human life at stake, doctors typically follow the lead of patients and their families, ordering such last-ditch treatments if that’s what they want. In many such cases, the patient dies anyway, often after many days, or even weeks, of intensive care. If the ICU stay is long, those days can end up costing as much as – sometimes even more than – the cancer treatment itself.

These are agonizingly difficult decisions, some of the toughest in medicine. When to pursue extraordinary, experimental treatment? When to throw in the towel and admit that maintaining a reasonable quality of life for the patient whose health is in a tailspin is more important than the increasingly quixotic search for a cure?

Gawande remarks that nearly all categories of dying patients and their families – with one exception – are ill-prepared to wrestle with such complex, emotionally fraught decisions. When, as too often happens, everyone’s energies are single-mindedly fixed on the search for a cure, doctors fail to raise the what-if question of death at all. It seems to them premature. Yet, when that likelihood suddenly looms large, and quick decisions have to be made about such interventions as feeding tubes and ventilators, patients and families scramble to wrap their minds around the new state of affairs. Unable to achieve unanimity, a great many families fall back to the default position, which is to press on relentlessly in search of a cure – even though the doctors may know, full well, that chances of extending such patients’ lives by more than a few weeks are slim.

Granted – as Claire reminds me, based on her hospice ministry experience – there are some cultural and ethnic traditions that inform this process. Orthodox Jews, for example, typically make decisions within a moral framework that nearly always opts for treatment, no matter what the chances of success. African-Americans and Hispanics, bearing cultural memories of parents and grandparents to whom the system too often denied advanced care, are more likely than others to press for it, even against medical advice.

Referring to science writer Stephen Jay Gould’s oft-quoted 1985 essay, “The Median Isn’t the Message” – in which Gould tells the story of how, upon learning he had mesothelioma, he decided to take his place among the tiny percentage of patients who survive, and did – Gawande speaks of the “tail” of the statistical curve. That’s the narrow portion that stretches a good distance into the future, and includes the fortunate few patients who manage to beat the odds and survive a deadly cancer. It’s good to remember, when faced with such stories, that the statistical median is just that – a median. Always, there are some who do better than clinical expectations, others worse. An awful lot of people, though, are trying to ride the tail of statistical probability – far more than will end up actually being on it. Gawande writes:

“I think of Gould and his essay every time I have a patient with a terminal illness. There is almost always a long tail of possibility, however thin. What’s wrong with looking for it? Nothing, it seems to me, unless it means we have failed to prepare for the outcome that’s vastly more probable. The problem is that we’ve built our medical system and our culture around the long tail. We’ve created a multimillion-dollar edifice for dispensing the medical equivalent of lottery tickets – and have only the rudiments of a system to prepare patients for the near-certainty that those tickets will not win. Hope is not a plan, but hope is our plan.”

I mentioned above that Gawande identifies one category of patients and their families who are better prepared for end-of-life decision-making. He’s talking about those who have received hospice services. Alone among the specialties of modern medicine, the hospice movement is not afraid to face death head-on and talk about it with patients – well before the anxious moment in the little family waiting room just off the ICU, when a doctor (or, just as likely, a critical-care nurse) sits down on the vinyl-covered furniture with the family and informs them a decision needs to be made about discontinuing life-support.

Patients who have signed on for hospice care have already decided they’re not going to cling to the slim tail of possibility any longer. They’re going to strive for the best quality of life they can construct in the here-and-now, placing their hope somewhere other than joining the tiny percentage who defy medical expectations.

I can’t begin to recall the number of grieving family members I’ve spoken with who told me they wished their loved one had gone on hospice earlier. Claire confirms for me, from her experience working with bereaved family members, that this is a nearly-universal comment. Curiously, the vast majority of hospice patients live no longer than a few days. That’s not because hospice care is somehow bad for them – quite the opposite. It’s because, by the time most patients make this decision, they’re already so far gone that hospice functions as little more than a transfer-station between the hospital and the funeral home.

It’s not meant to be that way. The hospice ideal is for weeks or even months of active, but mostly palliative, treatment. The hope is that the hospice experience will provide a gracious space for patients and their families to work through the full range of issues – medical, emotional, spiritual – they need to deal with at the end of life. Surprising as it may seem, there are even some patients who go on hospice for a time, then go off it – their improvement has been such that the “six months or less to live” criterion of hospice admission no longer applies to them.

So, signing up for hospice care is not giving up, as some fear. Far from it.

The key to a higher quality of life for the dying, Gawande points out, is communication. One of the things hospice team members do exceptionally well is to encourage patients and their families to share their thoughts and feelings about dying, then to listen attentively and respectfully to what they say. Next, they help them think through what goals they have for the rest of their lives, and do whatever they can to help them attain them. “You don’t ask, ‘What do you want when you are dying?’” explains one expert. “You ask, ‘If time becomes short, what is most important to you?’” Gawande observes:

“People die only once. They have no experience to draw upon. They need doctors and nurses who are willing to have the hard discussions and to say what they have seen, who will help people to prepare for what is to come – and to escape a warehoused oblivion that few really want.”

The asking of such questions was meant to be a central part of the new health-care legislation recently passed by Congress, but politics blocked it. The Tea Party mob ignorantly slapped the label “death panels”on the funding for these vital conversations, then pressured Congressional leaders to excise it from the bill – which they did, so as not to lose the bigger battle. This is a terrible miscarriage of justice for the dying: the sacrifice of a proven care approach that offered real promise for enhanced quality of life.

When the only goal worth talking about is to beat the disease, Gawande concludes – no matter what that may mean in terms of unproven, experimental treatments – the statistical outcome in nearly every case is going to be disastrous. Which general would you rather have leading the troops into battle? George Armstrong Custer or Robert E. Lee?

“Death is the enemy. But the enemy has superior forces. Eventually, it wins. And, in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who knew how to fight for territory when he could and how to surrender when you couldn’t, someone who understood that the damage is greatest if all you do is fight to the bitter end.”

This article is a good read, for anyone whose life has been touched by cancer – either their own or that of a loved one.

September 6, 2009 - Positively a Survivor

Today I come across a helpful website for cancer survivors from “across the pond.” It’s the MacMillan/CancerBackup website – evidently, a recent merger of two cancer-support sites.

There’s a lot of helpful stuff here about feelings and relationships, and how they impact the lives of cancer survivors. One item I found myself nodding along with addresses the whole subject of “being positive” – that common advice others often extend to us. Some of us may find ourselves thinking we ought to keep a positive attitude all the time, and that this is somehow essential to our wellness. Not so, says this website:

“When you talk to people with cancer, even the most positive of them will admit to low times when they felt depressed and anxious. No one can be positive 100% of the time. It’s important that you don’t feel that you must always stay on top of things. Being positive doesn’t mean having to feel happy and cheerful all the time. It’s a positive thing to acknowledge and talk about your feelings – even when you’re feeling tired, worried, depressed or angry.

There may be times when you want to talk about a difficult topic like the chance of the cancer being cured or making a will. Comments about being positive are then not always helpful - in fact, they can be very upsetting.”

Sometimes, you just can’t respond positively to cancer. There’s sadness associated with it, anger, even depression. It does no good to try to stuff powerful feelings like these, to deny that they’re present, out of a mistaken belief that keeping a sunny attitude is somehow therapeutic.

I think the most therapeutic thing, actually, is to try to keep closely in touch with our true feelings, to acknowledge them, to deal with them appropriately. This doesn’t mean bleeding all over our friends and family, emotionally speaking. But it does mean freeing ourselves from any prejudgment that there’s a particular way we ought to be feeling.

Most of us, I suspect, would do much better if we’d seek to banish that little word “ought” from our thinking, when it comes to feelings.

August 25, 2009 - Be Your Own Advocate

Here’s a rather shocking statistic from a recent study: 25% of abnormal medical test results never get reported to the patient.

Part of this is due to the negligence of certain doctors and their staffs – although, in some cases, it has to do with the national shortage of primary-care physicians. Often, it’s the primary-care physician who wrangles the test results and reports them to the patient. If someone’s getting their basic care from a doc-in-the-box or an emergency room, the lab or specialist may not have a clear idea of the chain of command. (In case you don’t know, a “doc-in-the-box” is a nickname for a walk-in clinic, at least here in New Jersey.)

Whatever the reason, this number is way too high.

Actually, something like that happened to me with my colonoscopy several years ago (results were normal in that case). I didn’t hear from the gastroenterologist, and I simply told myself, "I guess no news is good news." On a subsequent visit to Dr. Cheli (my primary-care doc) a few months later, I asked him if he’d heard the results of my 50th-birthday colonoscopy. He hadn’t, and had one of his nurses call back, then and there, to the office of the gastro guy. Then, I overheard him talking on the phone to one of that doctor’s office staff, chewing them out for not sending the results to either of us. Good thing there was no abnormality – although his office evidently didn’t have a fail-safe procedure in place for checking back in the event of results that never came.

All of this just goes to show us patient types: in this crazy, dysfunctional medical system, we’ve got to be our own advocates. If we don’t look out for our own interests, it’s very possible no one else will.

A word to the wise...

So, what about the rest of you? Have any of you had difficulties with test results not getting reported to either you or your primary-care doc? Sound off in a comment, below...

March 2, 2009 - Power of Blog

One of the tough realities of following cancer blogs is that, from time to time, someone you’ve come to know and respect in this strangely intimate medium dies. This is what’s happened in the “Clusterfook” blog written by Lisa, a young wife and mother who’s been dealing with ovarian cancer for several years now.

One of the last topics Lisa blogged about was what she called “power of blog” – a concept similar to power of attorney, but having to do, instead, with who would take over her blog. As she entered hospice care, she had to find someone to whom she could entrust her username and password, so as to inform the blogosphere of her death.

Her husband is not evidently much of a computer person, so she turned to a fellow blogger. On Saturday, February 28, Lisa’s friend, Karl, posted news of her death.

Just over a month ago, Lisa mused about the reactions of some readers, who said they found her blog “too depressing.” I never had that reaction, myself, as I read her words. I found Lisa consistently blunt and down-to-earth as she described her decline in health, but she seasoned those grim facts with a quirky sense of humor and a passion for living her days to the fullest.

Here are a couple of excerpts from that post of January 26:

“As heart breaking as death is, I’m doing O.K. with everything that’s happening. Do you hear any ‘woe is me?’ in my writing? Do I sound like I feel sorry for myself? Am I crying out for pity?

No, no and no.

Every day I strive for inner peace and so far I’ve found it. I consider myself one lucky chick-o-dee, perhaps I should say I’m a blessed chick-o-dee to have such calm and inner peace.

That’s not to say that I don’t cry. Crying is a release of emotion for me but I’m not crying every day. Usually I cry when having deep, heartfelt discussions with family members and friends. Those moments when we are brutally honest about how we feel about each other and say to each other the things we should be saying but usually never have the courage to say. Then the day comes when it’s too late to say what we’ve always wanted to say.

If you ask me, it’s a gift to have those opportunities right now. My advice to you is don’t wait until you are facing death to tell those dear to you how you really feel about them. Whatever is holding you back…let it go.”

In a post just prior to that one, Lisa related what it had been like to tell her 8- and 11-year-old girls (whom she calls by the pseudonyms “Cam” and “Teeny”) that she was dying:

“Telling Cam and Teeny the truth, that I’m not going to get better, was one of the most heart breaking things I’ve ever had to do. It is NOT easy to tell your children that you are dying. Listening to them cry was one of the worst things I’ve ever heard. Not being able to fix it is the worst feeling in the world....

Dude [that’s her blogging nickname for her husband] and I decided to deliver the news to the girls last Saturday afternoon, a few hours before they had to go to church. Teeny has been consistently lighting a candle for me every week and she finds a lot of comfort in going to mass with Dude. Cam doesn’t complain about going nor does she get real excited. Dude and I thought they might find some extra comfort in going to church after talking to us earlier in the afternoon.

I’ve been too sick to go to mass for a while so Dude takes the girls by himself. He said that each girl was snuggled up as close and as tight to his side as they could be during mass. And of course, Teeny lit a candle as she always does. When she got home she told me that she still believes in the hope that I’m going to get better. God, how I wish that little ray of sunshine was right....

My kids are strong but they have been dealing with cancer in their lives for five years. I hope the lessons they’ve learned and continue to learn make them stronger and don’t scar them. Although how do you tell an 8 and 11 year old there’s a lesson to be learned when their mom dies?

Well, I’ve got them surrounded by great people and a good support system that I hope pulls through for them. That’s how you do it.”

Lisa’s blog has a subtitle: “It Is What It Is.” I can remember repeating that phrase on numerous occasions, myself, during the acute phase of my illness. I can remember taking an odd sort of comfort in it. There’s something strangely liberating about shedding all the myriad worries and distractions of everyday life in order to focus on one, true thing: living as well as you can.

One of the reasons “It is what it is” is comforting is that it reflects a fundamental truth: a cancer diagnosis is a lot scarier through the windshield than it is in the rear-view mirror. Eventually you adapt, your family adapts, your friends adapt, as together you learn to face the future, whatever it may hold. A few people around us are never able to do that, and withdraw – but most manage to make the transition eventually.

Yes, it is what it is. And, sometimes, it can even be beautiful – like Lisa’s indomitable spirit. Truly, that’s the “power of blog.” Prayers and good wishes go out to all who love Lisa and miss her.

February 7, 2009 - Dumbth

Yesterday I slit open an envelope mailed to me by Care Allies (formerly Intracorp), the agency that pre-approves medical tests for my insurer, Highmark Blue Cross-Blue Shield. I guessed what it was before I opened it: a routine pre-approval for the PET/CT scan I’m having this coming Wednesday.

I usually take only the briefest of glances at these letters and put them aside. As long as I see the blessed words, “we have determined that the requested services are medically necessary,” I figure I have nothing to worry about.

This time, though, I saw something in the description of the test that concerned me. The letter reads:

“APPR: PET IMAGE W/CT, SKULL-TH 78815”

“They’ve made a mistake,” I thought to myself. “Care Allies has approved me for a CT scan of the head – not the scan of the neck, chest, abdomen and pelvis I typically have. This could be trouble, if they’ve approved me for the wrong procedure.”

I went right off and dug up the paper script Dr. Lerner had given me. That made me even more concerned, because I didn’t see anything there about neck, chest, abdomen and pelvis. The handwritten script reads:

“JSUMC, PET/CT Scan, DX: Lymphoma for restaging.”

“JSUMC,” I know, means “Jersey Shore University Medical Center.” “DX” means “diagnosis.” But it sure looked to me like Dr. Lerner had left off the list of body parts that are essential to a CT scan prescription. (Previously, I’d had problems with a Care Allies CT scan pre-certification that mentioned some body parts, but omitted the others.)

I called Dr. Lerner’s office and was put through first to someone in the billing department, then to one of the nurses. She said she’d do a little checking, and called me back a few minutes later. There’s nothing to worry about, she assured me. Everything was submitted correctly. Because this is a PET/CT scan and not just a CT scan, it’s automatically a scan of the whole body, so individual sections of the body don’t need to be specified.

“Then why does the letter I received from Care Allies mention the skull?” I asked.

“The ‘TH’ probably stands for ‘thorax,’" she replied. "It’s a PET/CT scan, skull-to-thorax.”

Mystery solved. But why, I’m led to wonder, can’t the people at Care Allies who compose these letters to patients avoid using arcane jargon and abbreviations? It seems to defeat the purpose of such a letter, which is communicating with non-medical professionals. I’m not sure, actually, that even for medical professionals “TH” would scream out, “thorax.” Clearly, this letter serves the needs of the insurance bureaucrats rather than the patients.

The late comedian Steve Allen once wrote a book called Dumbth, in which he catalogues a whole lot of misuses of the English language that are, for lack of a better word, just dumb. Its title is a word of Allen’s own invention, that describes writers’ thick-headed refusal to recognize that words they’re using just aren’t communicating. His definition:

Dumbth (pron. dumth) adj: a tendency toward muddleheadedness, or willful stupidity appearing in all segments of American life

Thank you, Care Allies, for thoughtfully seeking to communicate the details of the medical procedure for which you’ve pre-approved me. I’m afraid I have to nominate you, though, for the Dumbth Award, for your clumsy way of communicating that makes life needlessly difficult for patients like me.

October 8, 2008 - Better Living Through Web Crawling

There have been lots of technological developments in recent years that have revolutionized cancer treatment. One of the most revolutionary of all, though, is a change whose impact is indirect, even as it is massive.

You’re participating in it right now, as you read these words. It’s the Internet.

A September 29th article in the New York Times highlights the many different ways patients deal with this vast ocean of medical information at their fingertips:

“Information gives some people a sense of control. For others, it’s overwhelming. An acquaintance of this reporter, a New York father coping with his infant son’s heart problem, knew he would be paralyzed with indecision if his research led to too many choices. So he focused on finding the area’s best pediatric cardiologist and left the decisions to the experts.

Others, like Amy Haberland, 50, a breast cancer patient in Arlington, Mass., pore through medical journals, looking not just for answers but also for better questions to ask their doctors.

‘Knowledge is power,’ Ms. Haberland said. ‘I think knowing the reality of the risks of my cancer makes me more comfortable undergoing my treatment.’” (Tara Parker-Pope, “You’re Sick. Now What? Knowledge Is Power,” New York Times, September 29, 2008)

My personality type is obviously closer to the second of these two patients than to the first. One of the first things I did, even before my diagnosis was definite, was to high-tail it to library. What I couldn’t find on the library shelves, I began searching for – voraciously – on the internet. Before long, I had a basic knowledge of lymphoma and the underlying biological systems that are affected by it. My doctors know vastly more than I, of course – I never pretend otherwise – but at least we’re able to converse together with some degree of mutual understanding.

Not everyone’s like this. I know some fellow patients who put themselves, wholly and completely into their doctor’s hands, saying, “Please don’t overwhelm me with details, Doc. I trust you, and I trust you to tell me what I need to know about my condition.”

There’s no right or wrong here. It’s a matter of style.

Vive la difference.

October 1, 2008 - Stable Is Good

“Everything looks pretty stable.” That’s Dr. Lerner’s assessment of my recent PET and CT scan results, as we meet together for an examination this afternoon. He delivers the news in his best physician deadpan style, one I’ve grown used to over the course of our many consultations.

The doctor goes on to explain that the areas that were lighting up near my neck on my earlier PET scan are no longer lighting up on this recent one, and that there’s a small, new area lighting up on my lower back. “The problem with PET scans,” he quickly adds, “is that there are a lot of false positives – these areas are pretty small, so they could be nothing.”

They all look fine on the CT scan, he continues.

I ask about my residual abdominal mass that had measured 17% larger on my last CT scan – a measurement Dr. Lerner figured at the time could still be within the statistical margin of error (it seems the radiologists don’t start getting alarmed until such a mass shows 25% enlargement). It doesn’t look any bigger at all, on this most recent scan.

Round about this time the phone rings. Dr. Lerner apologizes for the interruption, then takes the call. It’s evidently from another doctor who wants to confer about a patient. The receptionist brings in a thick file, and Dr. Lerner spends 3 or 4 minutes sharing details similar to my own case – something about the growth rate of certain tumors, I can’t follow it all. After hanging up, he comments, “It’s nice to be able to tell someone good news for a change.”

“I guess my test results are good news, right?”

“Yes, they are,” he replies, “for your situation.”

It’s not exactly a ringing endorsement – and it’s delivered in that same deadpan style, friendly but not overly cheerful – but I’ll take it. What I think the doctor means by that last qualifier – “for your situation” – is that, with an indolent lymphoma no one looks for cure, only stability.

Stable is good. Guess I’ll watch and wait some more.

June 24, 2008 - Far from Paperless

An editorial in today’s New York Times highlights a sleeper sort of problem with big implications for anyone who goes to see a doctor: American medicine’s stubborn refusal to embrace computer technology when it comes to medical records.

The numbers, from a recent survey conducted by researchers at Massachusetts General Hospital, are eye-opening: “a paltry 4 percent of the doctors had a ‘fully functional’ electronic records system that would allow them to view laboratory data, order prescriptions and help them make clinical decisions, while another 13 percent had more basic systems.”

“This,” the editorial continues, “is a startling contrast with other industrialized nations. A 2006 survey by the Commonwealth Fund found that nearly all doctors in the Netherlands and the vast majority in Australia, New Zealand and Britain were using electronic medical records. Denmark has a comprehensive health information exchange that allows doctors to see all medical care and testing provided to a patient. They can even see whether a patient has filled a prescription, which is information that most American doctors lack.”

When I read something like this, I think of the several-inches-thick manila file folder with my name on it at Dr. Lerner’s office. Everything else in that office is shiny and high-tech. Sophisticated machines analyze blood samples in seconds. Medications are stored in a smart refrigerator, to which nurses can gain access only by keying in a security code and a patient I.D. number. Even patient appointments are managed by a computer scheduling program.

But patient medical records? That otherwise high-tech office is still in the era of dog-eared, photocopied pieces of paper stuffed into bulging files.

This is in stark contrast to the Memorial Sloan-Kettering Cancer Center, where I go for my second opinions. Most of that hospital’s record-keeping is paperless. When I checked in for my first outpatient visit several years ago, there wasn’t even any insurance paperwork to sign: they had me sign with an electronic pen, on one of those machines they use in department stores for credit-card signatures.

There’s a huge cost to maintaining and archiving paper records. There’s also a significant potential for errors, especially when it comes to prescriptions. Jokes about doctors’ poor handwriting aside, there are computer programs that can flag medication interactions and simple scribal errors, as a back-up check on overworked doctors and pharmacists.

Why is it that American doctors have been so slow to embrace this technology, when they’re on the cutting edge of so many other innovations? The Times editorial writers have a theory: “The chief reasons American doctors cite for not moving into the electronic age is the high cost of buying and maintaining the equipment, the inability to find a system that met their needs and a concern that a system would quickly become obsolete. Other industrialized nations have moved faster because of strong national leadership in setting standards and helping to finance adoption”

To these reasons I would add another one: fear of litigation. With medical-malpractice lawyers potentially tracking their every move, doctors are fearful of letting go of every little piece of the paper trail.

It all boils down to the inefficiencies of America’s patchwork quilt of small, independent medical contractors, living in fear of predatory attorneys. Countries with a national health system have a powerful incentive for adopting record-keeping standards and developing computer systems (and backups) that work. They also typically have some limits in place when it comes to medical-malpractice lawsuits.

It’s the patients who pay the price of these inefficiencies, of course – both in financial terms, and in terms of human error.

Time for a change?

June 6, 2008 – Game Face

A June 1 article by Jan Hoffman in the New York Times (“When Thumbs Up Is No Comfort”) comments on the recent buzz concerning celebrity cancer patients Patrick Swayze (pancreatic cancer) and Ted Kennedy (brain cancer).

Swayze “made a pointedly public appearance at a Los Angeles Lakers game, looking strong-jawed and bright-eyed. He released a statement about his lively schedule and good response to therapy.”

Kennedy “left Massachusetts General Hospital... flashing crowds a thumbs up, competed in a sailing race. International headlines cheered, ‘Fight, Ted, Fight!’”

Celebrities with cancer, Hoffman goes on to observe, seem to feel they have to put on a brave, public face. The toothy smile and the thumbs-up gesture are obligatory. Hoffman quotes Barron H. Lerner, the physician author of When Illness Goes Public: Celebrity Patients and How We Look at Medicine: “If Ted Kennedy wanted to stick up his middle finger, that would be the more appropriate finger, but he’s doing what he is supposed to.”

Our celebrity-besotted culture looks to movie stars, athletes, politicians and others in the public eye to serve as iconic examples of steadfast, stoic endurance – when, really, these people are no better equipped for such a role than the rest of us. I’m sure Swayze and Kennedy had their private moments of anger and despair, before composing themselves and putting on their game face for the cameras.

To a certain extent, lots of us cancer survivors feel an obligation to put on our game face and keep it on. We feel that way whenever someone looks us in the eye and earnestly asks, “And how ARE you doing?” Not long after our first remission, or after we’ve reached some plateau in our treatment, we find we’ve become adept at delivering short, cheery but not very informative answers. Such an answer is easier to supply than the lengthy, more accurate summary of a complex medical condition.

When folks ask me that question, they’re plainly hoping for a smile and a thumbs-up, little more. In the interests of accuracy, I really ought to say something like this: “Well, I’m no longer in remission, but I’m experiencing no symptoms and my only treatment at the present time is ‘watch and wait.’ I’m feeling a bit frustrated the doctors can’t do more to cure me, but I’m doing my best to stick with the program. I’m finding it a bit hard to get on with my life while the cancer monkey’s still clinging resolutely to my back, but then I remind myself there are lots of promising, new treatments out there for my type of non-Hodgkin lymphoma – some available for immediate use and others soon to emerge from the research pipeline. This gives me hope, but even so, not a day goes by that I don’t say to myself, ‘I have cancer,’ and feel twinges of anger, anxiety and sorrow.”

I won’t dump that torrent of words on the casual inquirer, of course. It seems more important, both to my questioner and myself, that I keep up the game face.

Is that dishonest? I don’t think so. It’s just a survival technique.

Hoffman also touches on the subject of the military metaphor for cancer (something I’ve addressed in earlier blog entries). Citing Dr. Gary M. Reisfield, a palliative care specialist at the University of Florida, Jacksonville, Hoffman says: “Over the last 40 years, war has become the most common metaphor, with patients girding themselves against the enemy, doctors as generals, medicines as weapons. When the news broke about Senator Kennedy, he was ubiquitously described as a fighter. While the metaphor may be apt for some, said Dr. Reisfield, who has written about cancer metaphors, it may be a poor choice for others.

Metaphors don’t just describe reality, they create reality,” he said. “You think you have to fight this war, and people expect you to fight.” But many patients must balance arduous, often ineffective therapy with quality-of-life issues. The war metaphor, he said, places them in retreat, or as losing a battle, when, in fact, they may have made peace with their decisions.”

Ask me no questions, I’ll give you no game face.

May 5, 2008 - How Doctors Think

This morning, I finish reading How Doctors Think, by Jerome Groopman, M.D. I’d give this book an unequivocally positive recommen- dation. It’s one every patient should read.

That’s no exaggeration. I really mean it.

The book’s important because of the light it sheds on a mysterious chemistry: that of the doctor-patient relationship, particularly when it comes to diagnosis. As we patients lay down our magazines and make our way from the waiting-room into that medical holy of holies, the examining-room, many of us look for something magical to happen there. Doctors, clad in their priestly, lab-coat vestments, shuttle from room to room. We’re a little in awe of our doctors. They have the gift. The whole medical system is designed to maximize their precious time, so more patients can have their few brief moments in the presence of the gift of diagnosis.

The higher you climb up the ladder of medical specialists, it becomes less likely your doctors will occupy themselves with routine matters like asking medical-history questions or taking vital signs. Nurses and aides – and, in teaching hospitals, doctors-in-training – typically perform such tasks. If the system is working as it should, their careful observations will be laid out before the doctor as he or she performs the cognitive process leading to diagnosis and treatment. If the system’s not working well, the doctor’s understanding of the patient will be superficial, and mistakes become more likely. Decisions may be made in a two-dimensional way: mechanically matching up symptoms with slots on a treatment-protocol flow chart, ignoring the living, breathing, thinking complexity of the human being who’s sitting on the edge of the examining-table.

Groopman unpacks the mysterious, priestly work of diagnosis and treatment for us laypeople to understand. He probes the meaning of the diagnostic gift, and asks how it can best be utilized. He reminds us of a very old-fashioned idea: that medicine is an art as well as a science.

Groopman’s point is that a clinical consultation in a doctor’s office is an act not only of number-crunching scientific analysis, but also of communication. In the examining-room, two people come together and talk. What they say – and, often, what they don’t say – can mightily determine the outcome.

I come away from this book with a renewed appreciation for two types of physicians: the unsung, relatively underpaid family-practice doctors whose intuitive diagnostic skills are honed to a fine edge, and those specialists who possess the strength of character to buck the system’s pressures to think only in terms of numbers, not the person. It’s no wonder Groopman’s final chapter is entitled, “In Service of the Soul.”

I think back to my own experience of diagnosis. Groopman could have used it as an example in his book. I go into David Cheli’s office for an annual physical. Aware that I’m nearing 50, I mention the fact that my father nearly died of a dissecting aortic aneurysm. I know these can be hereditary, I tell the doctor. Is this something I should be checked for?

“That’s unlikely,” says Dr. Cheli. “You don’t smoke, and your blood pressure is fine.” He sends me on my way, with the usual encouragement to lose weight and exercise more.

At the next year’s annual physical, I mention an aneurysm again. I’m not reporting any symptoms relevant to such a diagnosis, but it’s been on my mind, for some reason. Thinking back to that time, I now realize that maybe, on some subconscious level, I was aware that the mid-section of my body felt somehow different. If you’d asked me directly about it, though, I would have scoffed at the suggestion. (In retrospect, I realize I was experiencing one symptom relevant to lymphoma, night sweats – but I wasn’t attuned enough to mention it to the doctor.)

What I could articulate, on a conscious level, was a vague anxiety that I could end up like my father someday – being airlifted to a major medical center for a herculean operation to replace a split-open section of my aorta with a nylon substitute. It wasn’t a rational thought – but, as it turned out, it did have a kind of truth behind it.

Who knows what went through Dr. Cheli’s mind, at that point? Here’s a patient – overweight and a bit stressed-out, but otherwise healthy – worrying for the second year in a row about a medical condition for which he doesn’t fit the profile and doesn’t have the usual symptoms.

What Dr. Cheli did was send me for an ultrasound scan of the abdomen. Did he have a reason for doing so, other than my repeated question about an aneurysm? Was he ordering that relatively inexpensive test simply to give me peace of mind, or did he intuitively suspect something else was up? I don’t know. But, I’m awfully glad he did order the ultrasound. It was in the grainy images on that screen that the bulky tumor in my abdomen was first revealed.

The light bulb goes on for me, this morning, as I read these words from the Epilogue to Groopman’s book, about the thoughts that may go through our minds, as patients, as we talk to the doctor: “Our notions sometimes come from knowing a friend or relative with a similar symptom, or ideas may have been sparked by looking on the Internet. Our thoughts about our unrelieved symptoms often focus on the worst-case scenario. Such self-diagnosis is a reality that neither patient nor physician should ignore. Since the doctor may not address it, you should. ‘I’m most worried that what seemed like acid reflux could be the first sign of cancer,’ one patient might say. Or another might recount to the doctor how her friend was told she had indigestion but it was actually a brewing heart attack.... A thoughtful doctor listens closely to these worries.” [Jerome Groopman, How Doctors Think (Houghton Mifflin, 2007), p. 261.]

Thanks, Dr. Cheli. Thanks for listening.