August 31, 2010 - Creativity and Cancer Survivorship

Today I run across this little gem, an edited-down version of a talk by Monty Python member John Cleese on the subject of creativity:



Cleese may sound like an odd choice, at first, to give this sort of talk, but in fact - alongside the brilliant loopiness of his television and film projects - he’s long had interests in being a serious academic. For a while he was Rector of the University of St. Andrews, where I did my Ph.D. (alas, just before my time there, so I never met him). He transformed the Rectorship - until then, a largely honorific, student-chosen position - into one that engaged with the University administration on a number of issues of importance to students.

The advice Cleese gives here is down-to-earth and practical: especially what he says about the importance of “sleeping on” a problem, and also of constructing boundaries of space and time for regular, serious reflection.

Running his remarks through my theological filters, I’m struck by how many times he dances right up to the line of saying something spiritual, but never quite steps over it. (No surprise there, because he doesn't believe in God.) For example, when he attributes creative breakthroughs to the work of “the unconscious,” he could have said “the Holy Spirit” - but doesn’t. When he’s talking about the need to carve out time for focused pondering, he could have said “quiet time for prayer and contemplation” - but doesn’t. Certain parts of the Christian spiritual tradition, such as monasticism, insist on a daily schedule (the liturgical hours) that’s meant to nurture precisely the sort of creative engagement Cleese is calling for, and have produced some wonderfully creative people (ranging from Thomas Merton to Dan Berrigan to Sister Wendy of the art-appreciation videos). We Protestants may be a bit behind the curve on that one, but even we have traditions of spiritual practices that foster creativity and holy insight.

So, what does all this have to do with cancer survivorship? Cleese doesn't mention any connection, but I was led to reflect on something many of us survivors have experienced: how the enforced down-time of a chemotherapy regimen crashed into our otherwise busy, over-committed lives and forced us to spend time reflecting on things we’d otherwise never have thought about (or perhaps not until some long-postponed retirement - and maybe not even then, judging from what I’ve heard from some retired people who report being busier now than when they were working).

It was during the enforced down-time of my chemotherapy, for example, that this blog was born. Since having that experience, I haven’t even needed to try to schedule time for creative reflection. I’ve simply done it (at times to the detriment of some of my more routine obligations, but what’s a credit-card late fee or two, if you’re staying more spiritually grounded as a result of obsessing less over the small stuff?).

Whatever stage of the survivorship journey we’re in - whether in treatment, in remission, in relapse, or in that blessed land some are bold to call “cancer-free” - it helps to let go of the urgent worries from time to time and put them to rest for a while, even if only for the few hours of a good night’s sleep (if that’s possible, health-wise). It also helps to set up those boundaries Cleese is talking about, so we can grab a little time for ourselves, away from the frenetic rounds travel to one medical establishment to another, and trying to respond to some of the demands of our normal lives when we’re not doing that.

Stephen Covey, in a memorable illustration I’ve referred to earlier in this blog, called it “sharpening the saw.” If you don’t stop your ceaseless sawing - back and forth, back and forth - from time to time, and pause to sharpen the saw-blade, you’re doomed to steadily decreasing effectiveness.

So, let’s hear it for self-care, on the cancer-survivorship journey! A major part of self-care is refreshing ourselves at those creative wells, where our spirit is free to engage with the Spirit of the Lord.

August 27, 2010: Cancer-Fighting's New Cocktail Party

An article in Business Week, "Cocktails Are Next For Cancer-Drug Makers," highlights what its author calls a new development in cancer treatment. Comparing newly-developed cancer drug combinations to the drug cocktails that have been successful in treating HIV/AIDS, the author says:

"For more than a decade, cancer researchers have been crafting drugs to disrupt the precise cellular processes that fuel cancer, creating a $51 billion market in 2009. So far, the survival benefits have been measured in months, not years. That's because cancer, like the virus that causes AIDS, evolves rapidly to evade a single treatment. Rather than mixing and matching approved drugs, researchers are developing new, targeted combinations that work in tandem to block cancer.

'We're looking to see a radical change in terms of stopping the disease in its tracks,' says Tal Zaks, head of global oncology drug development at Sanofi in Paris. 'The return on investment here is not going to be just evolutionary; it has the potential to be revolutionary.'"

I don't get it. What's so new about chemo cocktails? I got R-CHOP (Rituximab, Cyclophosphamide, Doxorubicin, Vincristine and Prednisone) five years ago. Isn't that a targeted drug cocktail?

R-CHOP is concocted of three chemo agents and a steroid, linked up with Rituximab, a monoclonal antibody that does the targeting.

How is this different from what the Business Week article is talking about? Can anyone enlighten me?

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 16, 2010 - The Big C

This evening, I take a look at Showtime’s new “dramedy” on cancer – The Big C, starring Laura Linney. We don’t have Showtime on our cable contract, but I happen to notice that the full first episode is available as a preview on Showtime’s website.

I presume the 30-minute video I saw was the whole episode. There was a little disclaimer about it having been edited for online viewing, but I take that to mean that the curse words were muted (which they were).

Laura plays Cathy, a Minneapolis high-school teacher who’s just learned she’s got stage 4 melanoma. She declines treatment, and decides not to tell anyone, not even her family. The first episode is all about her bouncing from one wildly inappropriate, self-destructive behavior to another: impulsively deciding to have a swimming pool dug in her front yard, without getting the necessary permits; treating an obnoxious summer-school student with a savage cruelty the writers likely intend to be funny, but isn’t; telling off the cranky, reclusive old lady who lives across the street; overindulging in goopy desserts, liquor and even a cigarette she confiscated from a student.

Yes, I know diagnosis is a terrifying, world-shaking time – and everyone deserves to be cut a little slack in the midst of it – but no one is that crazy.

Linney does a spectacular role of acting the part, but it’s the script that’s over the top. This is a shame, because we cancer survivors could really use an actor of her caliber telling our story. She gets it right on the gut level, in a way that makes viewers identify with her, but she’s shackled by that unrealistic script.



The scene showing her interaction with her doctor is particularly problematic. She tells someone she’s going off to the dermatologist, but this guy is doing more with cancer treatment than any dermatologist I’ve ever heard of. I suppose, in retrospect, he’s really meant to be her oncologist, and the dermatologist story is a little cover-up on her part, but the script never reveals that.

Even as an oncologist, though, he’s unrealistic. There’s a flashback showing Cathy in his office, viewing her tumor on an x-ray film. It’s clearly an x-ray, not a CT or PET Scan.

He also admits to Cathy that she's his "first." First what? Cancer patient? (Not likely, given his years of specialist training.) His first terminal patient? (Again, not likely he missed that experience, if he's been an oncology resident). His first patient to decline all treatment from the get-go? (Maybe a little less unlikely, but not much.) His first melanoma patient? (If that's true, Cathy would be well advised to run as fast as she can, putting as much distance between herself and this rookie as possible.)

So, the writer and director would have us believe that a sensitive and intelligent professional in her late 40s or early 50s, with everything to live for, is going to chuck it all, declining treatment and keeping her diagnosis secret from everyone in her life, based on something she saw on an x-ray film in her doctor’s office? No follow-up tests. No second opinion. Not even a careful weighing of the treatment options, before coming to that momentous decision.

“I’ve always loved my hair,” Cathy tells her doctor, explaining why she’s ignoring his medical advice and declining treatment. “I cry every time I get it cut.”

Now, maybe that’s a feeble attempt at a joke on her part, but if that’s not the case (and there’s no clear indication it is), then the Minneapolis Board of Education is saddled with an astoundingly airheaded high-school history teacher.

The scene is both medically and psychologically inaccurate, and that’s a real missed opportunity – especially since what happens in her doctor’s office is the premise on which the whole series is based.

What, Showtime was too stingy to spring for a decent medical advisor?

Washington Post reviewer Hank Stuever makes a similar point:

“I’ve known people whose loved ones avoided treatment and kept cancer a secret until it was too late. Cathy’s decision is ‘The Big C’s’ most difficult hurdle – a wildly selfish and passive-aggressive act that is difficult to find funny. It also doesn’t seem believable in Cathy’s case – she just seems too smart and articulate to deliberately withhold something like this, unless she’s just being mean. Whatever her reasons, Cathy’s secret cancer does provide ‘The Big C’ a doorway to a fascinating story arc, in which the people in her life come across as unfailingly more selfish than she’s attempting to be.”

While this first episode does a not-so-good job of portraying the personal and medical aspects of a newly-diagnosed cancer patient’s life, it does depict one thing accurately: our society’s fear of cancer. The series, of course, is really about death, and what it means to go on living in its shadow with strength and dignity. It’s significant that the disease chosen as the vehicle for this philosophical and psychological exploration is cancer. The problem is that not all cancers are alike, and not even a metastasized, stage 4 melanoma is a reason to decide to forgo all treatment, especially for a newly-diagnosed patient.

Those quibbles aside, I do recommend the series, based on what I saw. I’d watch it myself if I had Showtime. Guess I’ll have to rent the subsequent episodes on DVD, once they’re available.

What To Say When a Friend Has Cancer

Here's an insightful article, shared by Betsy de Parry on the Patients Against Lymphoma group on Facebook. "Vital Tips to Keep Hope Alive Through Cancer" is a blog post by Lori Hope, a lung cancer survivor, on the CarePages website.

Lori's main focus is on what not to say to friends who have cancer. It really is helpful to think ahead of time about how to use our words in helpful, healing ways.

Sometimes the thoughts that first come to mind aren't all that therapeutic for friends with cancer. They may even make life more difficult. Such comments say more about ourselves, and our anxieties, than about the other's needs.

Here's a brief, digested form of Lori's pointers. For the full list, click on the link to the full article.)

• Don’t inadvertently blame the victims by hinting that they may not be thinking positively.

• Don’t blame the victims by asking about possible risky behaviors they may previously have engaged in, like smoking. This is an absolute no-no. (You may be wondering about it, but don't ask.)

• Don't share stories about people you've known who've had the same form of cancer, but didn't survive (Lori says she needs to hear at least five success stories to counter one such horror story).

To that one, I'd add a codicil: Don't share stories about people who had a completely different kind of cancer, thinking it will somehow be encouraging. The word "cancer" covers a vast family of diseases, making it very hard to generalize from one type to another.

So much for what not to say. Now, here are a few positive suggestions:

• For friends who may find it hard to be continually confronted by discouraging statistics, offer to help with research - but don't forward articles without first reading them through completely.

• Try not to be gloomy. Humor is therapeutic, so help your cancer-survivor friends find things to laugh about!

• Every once in a while, remind your friends you’ll be there for them, no matter what. Some survivors have the experience of losing longtime friends who simply drift away, because they can't handle the situation emotionally. It's always good to be reminded of friends who are still there for us.

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.

July 13, 2010 – Bendamustine Rising

Thanks to Betsy DeParry of the Patients- Against-Lymphoma group on Facebook, for posting excerpts from an article about Bendamustine in the treatment of indolent NHL.

Bendamustine (trade names Treanda, Ribomustin) is a chemotherapy agent that’s been around for decades. It was developed in East Germany during the Cold War, which is perhaps why it was slow to catch on in the U.S. and Western Europe. It’s receiving a lot of attention these days as a treatment option for NHL, either in conjunction with Rituxan or on its own.

The full article is found in the issue of the American Journal of Health-System Pharmacy (2010; 67: 713-723). Authors are Anjana Elefante, Pharm.D., B.Sc.Phm., Clinical Pharmacist, Department of Pharmacy; and Myron S. Czuczman, M.D., Chief, Lymphoma/Myeloma Service, Department of Medicine, Roswell Park Cancer Institute, Buffalo, NY.

Here are some excerpts from Betsy’s excerpts:

“Bendamustine is an alkylating agent that has a unique, multifaceted mechanism of action. Compared with other alkylators, bendamustine produces more-extensive and long-lasting DNA damage. Bendamustine also inhibits cell-cycle checkpoints, leading to mitotic catastrophe and apoptosis.”

Sounds pretty dire, eh? Well, the “DNA damage... mitotic catastrophe and apoptosis” is actually referring to cancer cells, so that’s not such a bad thing.

“Bendamustine is approved for the treatment of CLL and for indolent B-cell NHL that has progressed during or within 6 months of treatment with rituximab or a rituximab-based regimen. In Phase II and III trials in patients with indolent NHL and CLL, bendamustine has demonstrated response rates of 67–84% as a single agent and median durations of response of 7–21 months. Additional clinical trials are examining bendamustine as a single agent and in combination therapy for the treatment of hematologic malignancies and solid tumors. Adverse events associated with bendamustine are typically mild to moderate and can usually be managed with supportive care.”

Sounds pretty encouraging.

“NHL is the most common hematologic cancer and the sixth most common cancer in the United States, with an estimated 65,980 new cases and 19,500 deaths occurring in 2009. The histological subtypes of NHL fall into two major classes: indolent (slow growing) and aggressive (fast growing). Lymphomas with indolent histologies include B-cell follicular lymphoma, marginal zone lymphoma, small lymphocytic lymphoma, and cutaneous T-cell lymphoma. Lymphomas with aggressive histologies include diffuse large B-cell lymphoma, lymphoblastic lymphoma, and Burkitt lymphoma. Mantle cell lymphoma is classified as an aggressive lymphoma but possesses characteristics of both indolent and aggressive disease.

Treatment of indolent NHL depends on the histology and stage of the disease. Because indolent NHL is often asymptomatic in early stages, it is generally advanced (stage III or IV) at the time of detection. Treatment for indolent NHL typically involves a combination of chemotherapy and immunotherapy, such as cyclophosphamide, doxorubicin, vincristine, and prednisone (CHOP) plus rituximab. Alternatively, other chemotherapy regimens may be used in combination with rituximab, including cyclophosphamide, vincristine, and prednisone and fludarabine-based regimens. Radiation and bone marrow or stem cell transplantation are treatment options in selected patients.

Indolent NHL is generally incurable. Patients typically follow a course of remission and relapse requiring multiple rounds of therapy with rituximab, chemotherapy, or both. Eventually, most patients become refractory to chemotherapeutic agents, rituximab, or both.[20] Therefore, new treatments are needed to prolong the duration of remission and overall survival for patients with relapsed and refractory indolent NHL.

Bendamustine is useful in that it shows little cross-reactivity with common first-line indolent NHL therapies. It is effective in patients refractory to rituximab, chemotherapy, or both...”

What about side effects?

“Bendamustine is generally well tolerated. The most common serious (grade 3 or 4) adverse events are hematologic in nature. Gastrointestinal events are also commonly observed but are usually mild to moderate in severity. Adverse events can often be managed with supportive therapies or dosage modifications.”

Translation: like other chemotherapy agents, it can throw your blood counts out of whack and it can make you vomit. Yet, they say these side effects can be pretty much kept under control with other drugs.

In the oncologist’s lexicon, “well tolerated” doesn’t mean you feel good. It means the doctors don’t usually have to cancel the chemotherapy because it’s making you so sick you can’t stand it.

In any event, this is another bit of encouraging news for me, for whenever it should happen that “watch and wait” ends and “go and do something” begins.

It’s good to have more than one arrow in the quiver, to be sure.

Necrology

This week I'm attending the Presbyterian Church's General Assembly in Minneapolis. I'm blogging about it on my Monnmouth Presbytery Clerks' Corner blog.

Yesterday was the opening worship service, with several thousand people in attendance at the Minneapolis Convention Center. At one point in the service, it was announced that the Necrology Report would be presented, in the form of a list of names projected on the large screens over our heads.

"Necrology" is an odd word, but to those who frequent Presbyterian official meetings above the local level, it means a report of recent deaths. The General Assembly's Necrology Report is a list of ministers who have died during the previous two years, since the Assembly last met.

Flashing the names up on the screen was a creative way of presenting this information, without having to go through the tedious exercise of reading the list aloud. As we listened to some wonderful music, I scanned the names as each page was put up there, to see if there were any I recognized - any honored members of the older generation.

Bam! There was a name I recognized, but not from the older generation. It was Karen, a seminary classmate with whom I had worked side-by-side for a couple of years after we graduated, when we were both associate pastors. She died in a freakish accident: a burst blood clot in her lung, while she was on a high-altitude hiking trip. By the time the mountain-rescue team got her back down the mountain, it was too late.

Then there was Carter's name. I had never met her in person, but she and I were on the writing team for The Immediate Word, an internet sermon resource for preachers. Every week, we would speak via conference call, as the team planned the next installment. She had died suddenly of a massive heart attack.

In my mid-50s, I'm at the stage of life when I can expect to hear about this sort of thing more frequently - members of my generation who are dying.

I was very much aware of the fact that, with my cancer experience, I could very well have been numbered in that company. What would others have thought as they saw my name flashed on the screen, I wondered?

We cancer survivors have to deal with ever-present reminders of our mortality. To us, they take on a meaning that I suspect is very different than those who have always enjoyed good health.

June 7, 2010 - Is Google Making Us Ignore God?

Came across a thought-provoking article today by Ernesto Tinajero on Sojourners Magazine’s “God’s Politics” blog. It's called "Is Google Making Us Ignore God?"

Here’s an excerpt:

“God calls on us to meditate on God and God’s word. However, does the fast intake of information from TV, film, and especially the Internet make us less likely to experience God? According to new research, electronic gadgets actually change how we think and focus. Nicholas Carr famously asked ‘Is Google Making Us Stupid?’ Will it also make us ignore God?...

The theological perspective is that this busyness of the business of modern life draws us into the world of Martha and away from sitting at the feet of Jesus. We are being called to distraction, and the quiet, still voice of God goes unnoticed – unnoticed in the flood of ever new links to follow, unnoticed in the hectic pace of modern life, unnoticed in the flood of events, information, and distractions. Through it all, God continues to call us to sweet voice of prayer. Yes, the call I am heeding –returning to simplicity and healthier life – may seem too simple to make a difference. Yet, does it make it any less true?”

I wonder what the implications of this 24/7 deluge of distractions are for our immune system, and for the cancers like lymphoma that sometimes beset it?

Judaeo-Christian religion has a time-honored solution: it’s known as sabbath. Periodically creating for ourselves islands of spiritual peace – places and times for encountering the divine – ought to be central to any long-term program of recovery.

June 6, 2010 - Our Most Elusive Possession

Great column a couple days ago, from New York Times columnist Nicholas Kristof. Instead of gallivanting around Africa or someplace crusading against injustice, as he often is, his June 4th column is very personal.

That’s because he’s had a cancer scare: diagnosis of a kidney tumor 90% likely to be malignant, then surgery – and then, against the odds, a biopsy revealing he’s in the lucky 10%. The tumor was benign.

Still – and understandably – Nicholas had a scare, that led him (as cancer has led so many of us) to examine his life a little more closely. Here’s the result:

“This is trite but also so, so true: A brush with mortality turns out to be the best way to appreciate how blue the sky is, how sensuous grass feels underfoot, how melodious kids' voices are. Even teenagers' voices. A friend and colleague, David E. Sanger, who conquered cancer a decade ago, says, "No matter how bad a day you're having, you say to yourself: `I've had worse....’

I don't mean to wax lyrical about the joys of tumors. But maybe the most elusive possession is contentment with what we have. There's no better way to attain that than a glimpse of our mortality.”

Preach it, brother!

A few verses from the First Letter to Timothy come to mind:

"Of course, there is great gain in godliness combined with contentment; for we brought nothing into the world, so that we can take nothing out of it; but if we have food and clothing, we will be content with these."

- 1 Timothy 6:6-8

June 3, 2010 - Touched By an Angel

“During my illness, I had the presence of an angel that came and visited me...” This is a remarkable video, from the Livestrong website. The speaker is Matthews Brown, a leukemia survivor. It’s just under 4 minutes long, so it won’t take too much time away from whatever else you’re doing.



In the course of my ministry, I’ve heard some remarkable stories of spiritual experiences. I’ve never seen an angel, myself (at least, not the supernatural variety). Based on what I’ve heard from others, though, I’d say Matthews’ experience is unusual, but not as unusual as all that. Things like this happen to people more often than you may think.

We’ve all heard the truism, “God never gives us more than we can handle.” I found that to be true of my own cancer experience. From the square marked “Go,” it looks like it's a long way around the spiritual Monopoly board, but you do find yourself “passing Go” from time to time and collecting $200.

Let us give thanks for unsolicited, grace-filled experiences, through which we learn what remarkable spiritual resources are available to us, and how deeply we are loved!

If you’re a cancer survivor, how has the spiritual side of the experience been for you?

May 16, 2010 - What To Say or Do When a Friend Gets Cancer

Here’s a helpful video clip from the Today Show, featuring Lori Hope, author of the new book, Help Me Live: 20 Things People with Cancer Want You to Know:

Visit msnbc.com for breaking news, world news, and news about the economy

When I was sick, I was so fortunate to have so many friends from the church bring over food for the family. We never got tired of those gestures, repeated every other day or so for months. It wasn’t an economic thing; it was a way of giving us time with each other.

Of the clueless comments cited by survivors in the video clip, the one I remember hearing is “I know exactly how you’re feeling.” To me, that’s probably the number-one thing not to say. I’s meant to be a helpful comment, but it’s so patently untrue. Every person’s journey is different. Sure, there are points of commonality, but we do well to respect each other’s differences.

I also remember people quizzing me about what I might have done that brought on cancer. Is there any dietary or environmental link that leads to lymphoma, they wanted to know. I figure these comments had more to do with the person making them than with me. They saw what I was going through, and they were trying to reassure themselves that the same thing wasn’t likely to happen to them.

I do have to confess, though, that when I hear of someone diagnosed with lung cancer, I really have to refrain from asking if the person ever smoked. Maybe it’s a carryover from my experience with my father, who died of smoking-induced emphysema complicated by lung cancer. I want to reassure myself I’m not a risk.

Whether the loved one persisted in unhealthy, cancer-causing behaviors is neither here nor there. Such a question has nothing to do with begin supportive. It’s more an attempt to satisfy our own morbid curiosity, and to allay our irrational fears. So, I really work hard to avoid asking that one, myself.

April 20, 2010 - Hope IS a Miracle

This past Sunday, I preached on the story from the Acts of the Apostles about the raising of Tabitha. It’s one of a small number of biblical passages that recount not merely a healing, but the raising of a person from the dead. Although the Apostle Peter performs the miracle, it’s clear he sees it as the work of the risen Christ.

Preparing my sermon, I was struck by a rather unusual detail. Before performing his miracle, Peter cleared the room. Why was that?

I figure it was because Peter was none too sure of his ability to do anything helpful. This isn’t a sick woman, he thought to himself. It’s a dead woman. Dead is dead (unless, of course, you’re talking about Jesus’ resurrection, but that’s a story for another day).

You’d think, had Peter been more confident, he’d have practiced a little showmanship. You know, given the miracle some pizzazz. Wow the crowd.

But, no. Peter will have none of that.

When in doubt, pray. Having no other option, that’s what Peter decides to do. Falling to his knees, he offers fervent prayers to God: to get him out of this situation, to do something to help this grieving community – and, yes, even this poor, deceased woman, wherever in heaven or earth her soul may be.

After praying, Peter turns to Tabitha and simply says, “Tabitha, get up.” She does! The crowd outside is astounded when they see their beloved Tabitha, alive again. It just may be, though, that the most befuddled person in the village that day is Peter himself.

Many of us have been there before, in situations that seemed hopeless. It’s a story repeated time and again, in hospital corridors and family waiting rooms, as a doctor says to an anxious family, ”I’m sorry, there’s nothing more we can do.”

We’ve all heard of deathbed miracles, of course, but we also know these are few and far between. I told the folks in church on Sunday that the one miracle I have seen, time and time again, is how hope – that most persistent of Christian character traits – has a way of arising out of even the darkest of situations.

Sometimes that hope is as simple as being able to persevere, to get up and face another day without falling apart emotionally. Sometimes it’s the ability to let go and die with dignity. Sometimes it’s reconciliation with a loved one that we never imagined could have happened.

On his knees, alone in that small room except for the corpse stretched out on the bed, Peter may have feared his hope-reservoir had run dry. But then, when he least expects it, God breaks in once again, revealing new possibilities.

Such hope differs from what usually passes for hope in our culture – at least, as the word is used in everyday speech. Eugene Peterson points out that what a lot of people call hope is in reality something different. It’s wishing, not hoping – and wishing and hoping are not the same thing:

“Wishing is something all of us do. It projects what we want or think we need into the future. Just because we wish for something good or holy we think it qualifies as hope. It does not. Wishing extends our egos into the future; hope grows out of our faith. Hope is oriented toward what God is doing; wishing is oriented toward what we are doing.”

Peterson goes on to say that we can picture wishing as though it were a line coming out from us with an arrow on the end, pointing into the future, pointing toward that thing we most want to possess.

Hope is just the opposite. It’s a line that comes from God out of the future, with its arrow pointing towards us:

“Hope means being surprised, because we don’t know what is best for us or how our lives are going to be completed. To cultivate hope is to suppress wishing – to refuse to fantasize about what we want, but live in anticipation of what God is going to do next.” [The Contemplative Pastor: Returning to the Art of Spiritual Direction (Eerdmans, 1993)]

To me, that’s a beautiful and liberating insight. Yes, we all want certain things in this life. Yet, our wishes and God’s intentions for us may not always coincide. At times, God may have an entirely different plan – which means that, for us, the way of freedom and peace lies not in somehow pulling God around to our way of thinking, but rather letting go and trusting God to be in control.

April 13, 2010 - Cancer Concern Center Article

An article in today’s Asbury Park Press has some nice things to say about the Cancer Concern Center, a local organization that provided help to me at one of my lowest points, as my chemotherapy was coming to an end.

Until that time, I’d been toughing it out, turning to no one other than God and my family for support. The night I ventured down the street, to the rented commercial office space where the Cancer Concern Center support groups hold their meetings, was a revelation.

I felt less alone in what I was experiencing. Others had been there, too, and were more than willing to offer support and advice. There was concern – as promised in the organization’s name – but also friendship and even laughter.

From the article:

“The Cancer Concern Center, now in its 13th year, provides weekly support meetings, meditation and yoga classes, massage and Reiki therapy, nutritional workshops and new wigs to local residents. All the work is done by a volunteer staff, and all donations go to client programs.

‘Everything we do here revolves around the women and men who have the courage to walk through our front door,’ said Lisa Montalbano, volunteer office manager at the Cancer Concern Center. ‘We keep cancer survivors from slipping through the cracks of depression and despair.’”

So true.

There are other support-group providers with a national profile, like The Wellness Community, that have meant a lot to me as well. This is a local, home-grown organization. Here in Point Pleasant Beach, we're proud of what they do.

April 5, 2010 - An Idle Tale?

Preparing my Easter sermon based on Luke 24:1-12, I was struck by the reaction of the male disciples to Mary Magdalene and the other women who brought them news of the empty tomb and of the angel’s message: “Why do you seek the living among the dead? He is not here, but has risen.”

Their first response was to consider it “an idle tale.”

“Idle tale” translates an uncommon Greek word whose meaning is “nonsense” or “delusional.” If the women’s breathless announcement is in fact the first Christian proclamation, then it means we preachers started out with a score of 0 and 1 from the get-go.

Which is no big surprise – because the resurrection isn’t exactly an easy truth to absorb. In contradicts one of the most foundational of human experiences: that dead is dead, and there’s no coming back.

I thought about that sort of thing a lot when I was feeling ill from my chemo treatments. What if the treatments were unsuccessful and I was soon going to die, I asked myself? What if, someday soon, I was going to shut my eyes not only to this world, but to everything else? What if this life, this consciousness, that is me would suddenly blink out of existence? What would have been the point of it all?

My mind danced with that bleak idea from time to time, but didn’t invite it home. I kept returning to the truths of my faith, and especially this truth that is the resurrection.

I told the folks in our church yesterday that this whole “idle tale” response is actually a sort of backhanded testimony to the truth of the resurrection. If you were to set out to make up a story about a man being raised from the dead, would you be so quick to admit that some of the people who most wanted to believe it to be true rejected it, at first?

Similarly, if you were going to go out and make up a story about a man being raised from the dead, would you include details that made you, yourself look like a clueless doubter – as was the case with Peter? If you were interested in spreading a made-up story in the intensely male-dominated Roman world, would you make women the first witnesses of the resurrection – women, who were considered, back then, to be second-class citizens, whose testimony the male-dominated society considered unreliable?

Of course not. There are an embarrassing number of loose ends connected with the Easter narrative. Four different gospels tell the story, as well as certain passages from the letters of Paul – all of them differing from the others in one detail or another. If your purpose were to make the whole thing up, you would have managed your sources a little better.

The result is that it’s impossible to put the various Gospel accounts together in a single narrative – just as it would be if there had been multiple witnesses recording their impression of a single, dramatic incident, each from a different angle.

The resurrection is jarring and unexpected. The great Reformed theologian Karl Barth says somewhere that it’s “not a natural ‘therefore’ but a miraculous ‘nevertheless.’” Archbishop of Canterbury Rowan Williams – a distinguished theologian as well as senior leader of the worldwide Anglican Communion – likens it to the Big Bang. When we celebrate Easter, he writes, “we are really standing in the middle of a second ‘Big Bang,’ a tumultuous surge of divine energy as fiery and intense as the very beginning of the universe.” (Tokens of Trust, p. 95)

These are outrageous claims – but in their very confusion, contradiction and sheer outrageousness, they’re true to life, in an odd way. Such a mind-bending, paradigm-busting event could never be encapsulated in a tight, little spin-controlled story.

With all those lights of inquiry shining upon it from so many different angles, the resurrection is like a person moving across a room, lit up by a strobe light. You know how that looks: a person lit by a strobe seems to move in a series of jerky, disjointed snapshots, rather than the seamless, smooth motion of movie film. Under such lighting, you can get a general sense of what’s happening, what various events are taking place – but not how they flow from one to the next.

There are still significant gaps in our understanding of the resurrection – and always will be, this side of heaven. That doesn’t mean it’s not true. It means it’s a truth too big, too complex, too wonderful for us to fully comprehend.

April 3, 2010 - When All You Have Left Is Yourself

Today I’m reading an unusual article in Cure magazine online, "Keeping the Faith," by Kathy Latour. What’s unusual about it is that it deals with the topic of cancer and spirituality with attention to spiritual community.

I find that refreshing, because there’s lots of talk about a sort of generic spirituality when it comes to cancer survivorship. “If it makes you feel good, do it” is the all-purpose mantra. The problem with this sort of approach is that it ends up being a do-it-yourself activity, like trimming your nose-hairs or working out with a Thighmaster.

I think this individualism comes out of good old American separation-of-church-and-state thinking – something I’m in favor of when it comes to politics, but which is woefully inadequate in all but the most superficial discussions of religious faith. Take that line of thinking to its extreme, and you’ll end up like poor old President Eisenhower – who supposedly let himself be quoted saying: “Our government has no sense unless it is founded in a deeply felt religious faith, and I don’t care what it is.”

Some presidential scholars insist that’s an apocryphal remark, and it may well be – but, it catches the spirit of the age. (Eisenhower was a Presbyterian, by the way – though, if he really said that, I suppose he missed Sunday School the day they were teaching Calvin’s high conception of the church.)

In cancer support groups, “guided meditations” abound – those stress-relieving exercises that begin: “Close your eyes, pay attention to your breathing, and imagine yourself walking across a grassy field...”

Now, I can understand the appeal of that approach, to those who arrange chairs in a circle for their cancer-and-spirituality workshops. You can be Christian, Muslim, Buddhist, Jew or South Sea Islands cargo cultist, and still get something out of a guided meditation exercise. Whether the glowing figure walking towards you across that grassy field is Jesus or the Bodhisattva Maitreya makes little difference, because it’s happening in your own, private mental world. No muss, no fuss, no cross-denominational misunderstandings. Everybody leaves happy.

Outside of houses of worship, spiritual support groups are often led by people without any strong (or strongly evident) religious affiliation – the “I’m spiritual but not religious” sort of person. You’d think hospitals and agencies would seek out seasoned religious professionals – nuns who work as spiritual directors, say, or Muslim teachers of Sufi prayer – as long as they’re committed to interfaith dialogue. But, no. Charitable-organization program directors aren’t known for sticking their necks out, so they smile beneficently on psychiatric social workers with no theological background who say, “I can do that,” or on generic “interfaith ministers” holding degrees from unaccredited seminaries (or, God forbid, even internet “ordinations”).

That’s why the article I’ve been reading is so refreshing. The author, Kathy Latour, interviews Harold G. Koenig, M.D., of the Center for Spirituality, Theology and Health at Duke University – a prostate-cancer survivor himself – as he describes a discussion group he co-facilitated called “Engaging the Spirit.” It was a place “where cancer patients and survivors explored spiritual and faith questions as they traveled the cancer journey.” Knowing his group was composed of people from a variety of faith traditions, Harold began each discussion with a simple question: “How’s your spirit?”

OK, that’s a workable generic opening question, but Harold’s point is that the discussion need not remain in that level: “I learned from those who took part that no matter how someone defines his or her faith, in a group of cancer survivors there exists a common quest to understand existential questions about life and death.” When that quest is pursued through religious community, there comes an awareness that “God has a purpose for them and is in control and they don’t have to be. This is where mental health comes from.” Such a strongly-held conviction, the article continues, “frees them and reminds them that their illness can result in ‘something good.’”

From his own experience as a survivor, Harold upholds the value of “a belief system that frames your diagnosis in the context of your life and what you believe happens after life. If you have no framework to place that in, all you have left is yourself and it isn't enough. You can't carry the full load – you weren't meant to.”

A great many recent research studies of spirituality and health, Harold maintains, conclude that people who follow a particular faith tradition “need and use fewer health care services because they are healthier, more likely to have intact families to care for them, and have greater social support.”

The Rev. Isabel Docampo, associate professor of supervised ministry at Perkins School of Theology, “says her fear and depression after facing surgery for life-threatening cancer of the salivary gland came not from a crisis of faith, but from the pain and sadness that she felt from the idea she might leave her 21-year-old son, Ben, and her husband of 18 months, Scott Somers, also an ordained minister.”

“The way I have always looked at life is that it is what it is,” Isabel reflects. “Life is a struggle and God has been there for all the blessings and all the bad stuff, and God is going to be here for the cancer.”

Amen to that.

I wouldn’t want to face cancer knowing that “all I have left is myself” – nor some individualized spirituality I’d made up out of whole cloth, either. One of the great strengths of submitting oneself to the discipline of a particular religious tradition is knowing it’s not all about me, nor will it ever be so.

Now, on to my Easter sermon...

March 29, 2010 - Survivors' Tips from Dr. Laura Liberman

When I attended the Lymphoma Research Foundation’s national meeting in New York last fall, one of the most helpful presentations I heard was by Dr. Laura Liberman, a radiologist on the staff of the Memorial Sloan-Kettering Cancer Center. Dr. Liberman spoke not so much as a physician, but as a cancer survivor. She herself has been successfully treated for lymphoma.

She evidently gave the same talk again at a more recent event at MSKCC, and they’ve posted an online video of it. It’s just 30 minutes long, and is well worth it.

Laura’s experience was, like mine, one of tables being turned. As a pastor, I’ve visited with many cancer patients, and have tried to give them what help I could. She and I both found it disorienting, at first, to assume the role of a patient. In fact, the title of Laura’s book is I Signed As the Doctor – the first several times she signed consent forms for medical procedures, she made the mistake of signing on the line marked “Doctor,” rather than “Patient.”

Here are Dr. Laura Liberman’s cancer survival tips, a baker’s dozen:

1. Reach out to your friends.
Some people can’t deal with your cancer (it’s not in their nature), but many will be grateful for the opportunity to step up and help.

2. It’s OK to cry, but try to keep it to 20 minutes a day or less.
This is no joke. An oncology nurse gave her this advice. Laura actually found it helpful to try to fit her crying into that period of time (20 minutes at a stretch, four 5-minute crying jags, whatever worked). I didn't do much crying myself, being the typical male in our culture, but I appreciate the importance of giving ourselves permission to feel sad.

3. Ask people to pray for you.
Laura’s of the opinion that prayer, from any and all religious traditions, is a good thing. If nothing else, you may receive a sense of positive energy coming toward you, and it allows friends want to do something to help you who may have no other way to do so.

4. Find doctors you can trust.
You don’t want Dr. House from TV, she says. You want someone who’s empathetic as well as technically skilled

5. Take it bird by bird.
A literary reference to Anne Lamott’s book of that title. Lamott tells the story of how her brother was frustrated at the magnitude of his grade-school report assignment on “The Birds of North America.” Their father gave him the sage advice to “take it bird by bird.” So, too, with cancer. The big picture can feel overwhelming, especially at the outset. Take it one medical procedure at a time.

6. Be sensitive to your family.
Be honest with your kids, but don’t overwhelm them with more information than they can handle. Make sure your kids know you will still be there for them.

7. Be your own advocate.
Do your own research. Bring someone with you on doctor’s visits – not only to help you advocate for yourself, and also to listen for details you will probably miss. Laura suggests “bringing your own anesthesia” – not the big stuff you need an anesthesiologist for, of course, but she sings the praises of something called Gebauer ethyl chloride, a topical application you can get at the pharmacy with a prescription. The stuff numbs the skin; it’s what they spray on kids’ skinned knuckles in the emergency room. Emla Cream, she says, is also useful, though you have to apply it a half-hour before. Not every doctor, she says, is alert to the value of preventing minor pain, like that of a needle insertion, with such topical preparations. Bring the stuff with you, though, and the doctor’s unlikely to object.

8. Find silver linings (it’s an opportunity to get new hats!).
Laura says she indulged herself, when she was losing her hair, by buying herself an embarrassing number of fashionable new hats. People want to say “You look great,” she points out – but when they can’t, you can always ask them, “Do you like my hat?”

9. Discover your inner Zen.
By this, she means whatever it is that brings you to a place of inner peace. There’s an awful lot of waiting associated with being a cancer patient, and all that downtime can lead to excessive worrying. One friend advised her to pretend each doctor’s visit is a trip to the airport – if you don’t have to wait that long, you’ll be pleased. Get an iPod, she also advises – so you can listen to music during all those waiting experiences. Putting songs onto your iPod is something teenagers can do for you.

10. Keep your sense of humor.
Nothing about cancer is a joke, but if you can focus on things that make you laugh, that’s a good thing.

11. Play the cancer card.
Every once in a while, it helps to mention that you have cancer. Sometimes people will give you special consideration (she’s got a good story about this on the video about getting a cab in New York).

12. Savor celebrations. It’s not all about the cancer!
Celebrations are important at any time of life, but especially when you’re sick. “The way you make life good is by incorporating good stuff into it.”

13. Use your experience to help others.
Give back, pay it forward, or whatever you like to call it. This can help you feel you’re going through this experience for a reason

Good advice. Check out the video!