March 28, 2007 - Only Human

Today, another high-profile political figure has brought cancer into the headlines. Just days after Elizabeth Edwards' revelation, White House Press Secretary Tony Snow has revealed that his colon cancer has returned, and has spread to his liver and other parts of his abdomen. In 2005, he had surgery to remove his entire colon, then six months of chemotherapy. Now, he's facing unspecified further treatments and surgery.

Like Elizabeth, Tony's a fighter. "I'll be back," he's vowed. For now, Tony's assistant will be handling the press briefings, while he's at the proverbial undisclosed location, weighing his treatment options.

According to press reports, Tony's one of those unfortunate people who's on the losing end of the genetic lottery. His mother died of colon cancer when he was 17. This family medical history has made his doctors hyper-vigilant – they've sent him for scans every two to three months, in recent years. But these most recent tests have only alerted them to an outcome that was already genetically predetermined. While the doctors haven't used the word "incurable" in his case, they've made it clear that only a small percentage of patients with Tony's diagnosis and staging are ever cured.

One news article points out that the seeds of Tony's recent recurrence were probably already planted, even before his 2005 surgery. The malignant cells were already growing in his body. They were just too few in number to show up on the scans. That's one of the frustrating features of cancer: it only takes one strand of DNA with its cancer-switch in the "on" position, to start the disease's progression. By the time symptoms appear, malignant cells already number in the millions.

We imagine our bodies as static: that we have the same colon, or lungs, or liver as we had in our teens. Yet, the reality is, we are dynamic creatures. Our cells are constantly dying and being reborn, at a furious rate. Guided by their incredibly intricate DNA blueprints, our bodies are constantly reinventing themselves. From time to time, one of those reinvention experiments blows up in the laboratory – and that's cancer.

More than most Press Secretaries, Tony is a media figure in his own right. He was a Fox News commentator and talk-show host before the Bush Administration tapped him to be the President's media point man. He's one of those cool, calm, collected, always-in-control individuals. He carries himself well in his tailored suits, and responds to the pit bulls of the Washington press corps with dignity.

They say that, as Tony was being introduced to the press corps for the first time, someone noticed a yellow "Livestrong" bracelet from the Lance Armstrong Foundation, peeking out from under the cuff of his sleeve. When asked about it, he teared up a little. "That's because I had cancer last year," he replied.

Sadly, Tony's use of the past tense was premature. He didn't know it at the time, but he still had cancer as he uttered those words. The question for the future is whether his condition can be managed. I certainly hope so.

This story, and others like it, remind me I'm not alone. There are millions of us cancer survivors out there, and we feel a certain kinship with one another. We're only human. And, as human beings facing this disease, we need to stand together.

Live strong, Tony.

March 26, 2007 - Incurable Hope

I've been thinking about the recent news stories about John and Elizabeth Edwards: her cancer and his race for President. She's a breast cancer survivor, who's just learned that her cancer has come back. It's metastasized to the bones. For the first time, the doctors are calling it "incurable."

I feel for the two of them, standing before the TV cameras, the eyes of the nation upon them, and uttering that dread word. It brings to mind, in a small way, my own experience in standing up before the church I serve, and telling them of my own cancer diagnosis. It's such personal information, but, for people who hold positions of public prominence, it's not privileged information. It's got to be shared. I struggled mightily with the questions of when and how to share it. I'm sure they did, too. Finally, they just came right out and said it. What else could they do?

There's been much debate about the other decision the Edwardses have made: that John will stay in the Presidential race. Reactions from the chattering classes have run the gamut from "What courage!" to "What selfishness!" (This, despite the fact that Elizabeth stood right there beside her husband, and declared in no uncertain terms that she supports his decision 100%. She's no slouch, when it comes to speaking for herself.)

I think most of the negative reactions are based on misinformation. The word "incurable," as applied to cancer, doesn't mean what it used to. Not so many years ago, if a doctor told you your cancer was incurable, the next words were likely to be, "I'd advise you to get your affairs in order." These days, a great many incurable cancers can be effectively managed, for a very long time.

Most forms of diabetes are incurable, too – but no pundit would dream of suggesting that a candidate withdraw from a political race if his or her spouse received that diagnosis. "Cancer" is a word that continues to evoke all sorts of irrational fears. Maybe the Elizabeth Edwards story can provide a teaching moment for the general public, in that regard.

Sure, Elizabeth's further medical treatments, whatever they may end up being, will put added strain on her husband. The two of them give every indication of being a close and loving couple. How could cancer not have such an effect? This news is a reminder that politicians are people, too.

In this era of political handlers, image management and "spin," we seem to have forgotten that simple, down-to-earth truth. Lincoln fought depression. FDR used a wheelchair. Churchill was a little too fond of his whiskey. If there had been such people as image consultants when these men entered politics, would their names ever have made it onto a ballot?

In his column in today's New York Times, Bob Herbert writes, "John and Elizabeth Edwards are giving the country a world-class lesson in courage and candor." Indeed.

So, let's lay off John and Elizabeth Edwards. From where I sit, the "courage" label looks to be the best one to apply to them. They've determined, in light of this disheartening news, to keep on doing what they've been doing for some time: living with cancer.

More power to them.

March 20, 2007 - A Good Death

Today I receive an emergency call, to come to the critical-care unit of Jersey Shore University Medical Center. It’s Bill, one of the elders of our church. He’s dying.

Bill has been in “the Unit” for some weeks, being treated for complications of CLL, Chronic Lymphocytic Leukemia. He’s been in and out of hospitals for the past couple of years, but this time it’s pneumonia, and it’s not going away. His leukemia has flared up, his immune system is depressed, and it’s hard for his body to fight off the invaders. On Saturday, they put him on a ventilator, but the downward spiral continued. Earlier today, the doctor told Bill and his family there’s nothing more that medical science can do for him. He had a grim choice: stay on the ventilator and live a little longer, or remove it and let nature take its course.

Bill, who’s quite conscious and lucid, made the decision himself (thus, sparing his family a hard choice). Taking a pad of paper, he wrote, “Let’s get started.” Soon after I get there and say a prayer with Bill and a dozen or so family members, all of us holding hands around his bed, the nurse asks us to step out into the hallway for a few moments, while she and a technician remove the tubes. We return a few moments later and begin the vigil.

I’ve been in hospital rooms with dying people numerous times, but I think this is the first time the patient has ever been completely lucid as the ventilator was removed. To me, this makes the moment all the more powerful. I feel in awe of this man, who’s able to face his own death with such calm determination. Will it be so for me, when my moment comes?

The nurse increases the morphine drip, then turns off the computer monitor displaying his vital signs. She’ll keep track of the numbers from her monitor out in the nurses’ station, but here in the room the screen is blackened, except for the word, “Privacy.”

Time stands still, as it often does in such situations. The morphine beckons Bill into a merciful sleep, as his life slowly ebbs away. There’s no single moment when we can all say to each other, “There, it’s over.” Death (at least, this kind of death) is more of a process than a single pinpoint in time. It’s not as it so often is in the movies, when a too-healthy-looking actor says something profound, then falls back into the pillows. Yet, there does come a time, after the breathing has stopped, when the family members raise their heads, look up at one another and confirm, with a glance and a sigh, “Yes, he’s gone.”

We say another prayer. Hugs. Tears. First discussions about funeral plans. This is a close and loving family. They hate to be here, but at the same time there’s no other place in the world where any of them would rather be. They’re here for him. Joy and sorrow intermingle, in a sadly beautiful way. I feel it, too, because Bill was my friend. Then, the family goes off to get some well-earned rest, and I drive over to the church to conduct the monthly meeting of the Session, our governing board. It’s another one of those abrupt transitions, that are part and parcel of this peculiar job. From death to Robert’s Rules of Order in less than one hour.

It’s a somber meeting. Not so many years ago, Bill was one of the elders actively serving on the Session, and sat at this very table. He was well-known and well-loved in our church. We go through our essential business, but there’s not much joy in it.

Cancer has claimed another victim. Bill was 73, but he could otherwise have expected to live much longer. He was in excellent physical shape, having run several New York City Marathons as a younger man. He loved his wife, Jean, his children and his grandchildren. He had a lot to live for.

But, it was not to be. “Death is a mystery,” says the Church of Scotland liturgy I often use at funerals. A mystery, indeed. We can only trust that someday, in some other place very far from this one, it will seem less so.

"Listen, I will tell you a mystery! We will not all die, but we will all be changed..." (1 Corinthians 15:51)

March 17, 2007 - A Gap in the Record

Today, I officiate at a St. Patrick’s Day wedding ceremony. The couple chose this day to honor the bride’s Irish heritage, but they had an uninvited guest: a fellow Irishman named Murphy (as in Murphy’s Law – “If anything can go wrong, it will”).

Last night’s rehearsal took place in the middle of a Nor’easter – sleet, snow, high winds, the works. Not all the wedding party made it to the church, but enough did that we muddled through.

Today – the wedding day – one of the missing groomsmen never does arrive (airline flight canceled), the church roof springs a leak (melting ice dams) and the groom’s father arrives on crutches, having slipped on the ice outside his hotel and broken his ankle. Before the ceremony, Murphy’s Law ruled, but not after we got started. Everything goes just fine, from “On behalf of the families, I welcome you...” to “You may exchange a kiss.” I’m happy about this couple’s prospects. They’re fine people, and their unseasonably icy wedding day will provide some colorful stories at a future anniversary party.

Afterwards, I do as I usually do, and record the essential details in my pastoral record-book. This book is a sort of events diary, a log of significant liturgical occasions at which I’ve officiated. I started it years ago, before I was even ordained, on the advice of one of my mentors in ministry. It includes baptisms, weddings and funerals, as well as the titles and scripture texts of all my sermons. It’s an old-fashioned sort of record: pen-and-ink entries on archival-quality paper. No electronic data storage here (which, given the rapidly-evolving world of digital storage media, is a good thing).

Anyway, as I record the new entry, I notice there's a gap in the record. Between December 30, 2005 and June 10, 2006, there are no weddings. That period of time coincides with the months when I was undergoing chemotherapy.

I do something like a dozen weddings a year, on the average. It just so happened that, when I was diagnosed with cancer, I didn’t have any weddings on my calendar for many months. That was just as well, as it turned out – I didn’t have to call anyone and beg off. I didn’t accept any new wedding bookings for a while, directing all inquiries to Robin (our associate pastor). It’s hard to make firm commitments when you’re getting chemotherapy.

Now, my file of wedding applications at the church is bulging again. It’s another sign that life is returning to normal.

The gap in my pastoral record-book is a reminder of what I’ve had to go through, in this strange season of my life. The beginnings and endings of this season are indistinct; it took two or three months to diagnose the cancer, and even now I don’t know for sure whether I’m out of the woods. It was a time when nothing was happening, and everything was happening. I’m still living into a full realization of what it is I’ve been through, and am still going through.

March 14, 2007 - A Doctor Shortage?

News articles about the aging of my own "baby boomer" generation abound. The news media has been sounding that particular drumbeat for so long, I hardly notice it any more. Yet, one article I saw today made me sit up and take notice.

It comes from Newsweek, and has to do with a predicted shortage of oncologists in the years to come. It's not that the absolute numbers of these specialists is decreasing (although the article does talk about "a slowing growth in the supply"). The bigger issue is that the demand for their services is going up.

Three factors seem to be exacerbating the problem. First, as we boomers age, there are getting to be more older people in general – and we all know that, statistically speaking, the likelihood of contracting cancer increases with age. Second, people who do have cancer are living longer – a good thing, to be sure, but it also means that oncologists' relationships with their patients are continuing over much longer periods. Third, as cancer treatment becomes more complex, fewer and fewer family-practice physicians are directly involved in treating cancer patients. Nearly all cancer patients are now being referred to oncologists, who manage most aspects of their care.

As the doctor shortage worsens, it will become harder to get an appointment with an oncologist in the future. Some oncologists may begin referring patients back to their primary-care physicians for some aspects of their care, with the oncologist consulting from a distance – although the continuing trend toward highly-specialized cancer treatments makes this move problematic.

The Newsweek article also reports on a troubling personal characteristic of many younger doctors entering the oncology field today: they evidently don't have as strong a work ethic as their elders. Younger oncologists see significantly fewer patients per week, on the average. Some are intending to retire early, and others are seeking to work part-time during certain phases of their careers.

I'm aware of how hard Dr. Lerner works to keep up with his roster of patients – and, in talking with other cancer survivors, I hear similar stories about their own doctors. The need is great, and growing bigger all the time. The medical establishment is only just beginning to wake up to this looming problem, and to take steps to address it (increasing the number of oncology residency slots in teaching hospitals, for example).

A year ago, slogging though chemotherapy side effects, I was wondering whether my treatments would succeed in putting me into remission. The fact that I now have the luxury of worrying whether, years into the future, I'll still be able to get in to see my oncologist speaks volumes about how far I've come. Yet, it's a worry, all the same.

March 10, 2007 - Drugs that Heal, Drugs that Harm

Back on April 10, 2006, when I was in the midst of my chemotherapy treatments, I attended a workshop at the local hospital on managing cancer fatigue. It turned out the event was sponsored by the manufacturers of Procrit, a drug that helps boost red-blood-cell counts. I walked away with all kinds of swag with the Procrit name emblazoned across it, then wrote about the experience in this blog (photo above is from April, 2006).

Today, a New York Times article informs me that the FDA has raised questions about the safety of both Procrit and its chief competitors, Aranesp and Epogen. Evidently, there’s new evidence linking these drugs to heart problems and premature death.

It’s not that the FDA is completely banning these medications, which have undeniable benefits in helping chemo recipients keep their blood counts up and avoid transfusions. The government regulators are just encouraging doctors to be much more cautious in prescribing them, avoiding them whenever there’s an alternative.

This story highlights the paradoxical nature of many cancer medications, including many of the chemotherapy drugs themselves. They cause immense difficulties for patients. Some of them are even possible carcinogens. Yet, using a complex, lesser-of-two-evils calculation, doctors have no choice but to prescribe them, anyway. It’s a roll of the dice, but a calculated one.

This makes me think of a scene from one of the Star Trek movies. A team of starship Enterprise crew members, including the inimitable Dr. McCoy, have traveled back through time and landed on Earth in the 20th century. Walking down a hospital corridor, Dr. McCoy passes a patient on a gurney who’s writhing in pain from an inflamed appendix. The good doctor reaches into his bag of tricks and gives the patient a pill. In no time at all – to the utter amazement of his 20th-century doctors, who haven’t seen McCoy slip the guy the drug imported from the future – the patient leaps up from his gurney, completely cured, without surgery. Dr. McCoy goes quietly on his way, muttering something about the appallingly primitive nature of 20th-century medicine.

Last spring, I was fully prepared to receive Procrit or Aranesp. Dr. Lerner had mentioned these drugs to me as possible treatments, should the chemotherapy depress my blood-cell counts. Fortunately, I got through all six chemo treatments without having that kind of difficulty. If I hadn’t, though – and if I’d received Procrit or Aranesp – I expect I’d be reading this article today with a great deal more anxiety.

These drugs have been around for fewer than 20 years. Medical science is still working the kinks out of them – as is true of so many cancer treatments. It makes me wonder what unforeseen, long-term side-effects may emerge, down the line, from the treatments I have actually received.

Even more, what will the Dr. McCoys of the twenty-second or twenty-third century think of treating cancer patients with chemotherapy, radiation or even surgery? Will they look on these treatment strategies in the same way today’s doctors look on bloodletting? Will there even be such a thing as cancer, in that enlightened era?

We’re creatures of our time and place, no doubt about it. We cancer patients gratefully accept the treatments and medications we do receive – but, we also watch our backs, because who knows when an article like this one will come out, calling into question yesterday’s conventional medical wisdom?

March 9, 2007 - All Clear, Sort Of

Today, Claire and I go to Dr. Lerner’s office, to hear the results from the PET/CT fusion scan and accompanying CT scans I had several days ago. I go in first, for my port flush and blood draw. Then, Claire joins me in the examining room, as we wait for the doctor.

We both wonder why we haven’t heard anything beforehand from the office staff. With every other scan I’ve had since my chemo ended, someone from the doctor’s office has phoned us with a brief synopsis of the results, letting us know things looked basically OK. This time, the phone didn’t ring. Does this mean there’s bad news coming?

How easily our minds embrace the worst possible outcome!

As it turns out, there’s been no call because there’s been nothing to report. The test results have only arrived today, Dr. Lerner tells us. He’s reading the radiologist’s narrative report for the first time, in our presence, although he did have a chance to examine the films a little earlier.

The news is basically good. “The belly is fine,” the doctor tells us, in his measured, dispassionate, Hippocratic tones. No change in the size or appearance of the scar tissue remaining from the abdominal mass. No other hot spots on the PET-scan films, either – with one exception. A “sub-mandibular lymph node” – one located just below my right jawbone – is lit up, indicating it’s a bit swollen.

Dr. Lerner asks if I’ve had a cold recently. Well, as it so happens, I have. About two weeks ago. Sore throat, nasal congestion, then a cough that settled in my chest. It lasted the better part of a week. I remember this clearly, because it was the first illness I’ve had, since finishing chemotherapy in May. That seemed rather remarkable to me, to have such a long run of good health without even so much as the sniffles.

That could account for the swollen lymph node, the doctor tells us. The radioactive sugar solution from the PET scan heads right for areas of high metabolic activity, shining a searchlight on the fastest-growing cells. Cancer is one possible explanation for swollen lymph nodes, but a simple infection – like the common cold – is another.

Dr. Lerner has me sit on the examining-table, while he feels for swollen nodes. He takes a much longer time palpating my neck this time, just below my right jaw. He says he feels nothing out of the ordinary: “nothing to write home about.” If I had an infection several days ago, when I went for the scans, it’s gone now.

We’re relieved, of course.

Even so, the doctor asks me to come back in two months, for both blood work and a physical exam – one month sooner than usual. It’s just a precaution, he assures us.

We wish there were a more resounding affirmation, but we’ll take what we can get.

March 5, 2007 - Gang Member

Several months ago, I wrote of what it felt like to be turned down for supplemental life insurance, due to my recent medical history. An article in today's New York Times reminds me of an even more dire consequence I could have experienced, but – thankfully – haven't: losing my medical insurance.

The story is about a North Carolina woman named Vicki H. Readling, who's exactly my age: 50. She's a real-estate agent, whose income is about $60,000 a year. Even though she works for a large brokerage firm (Century 21), she's considered an independent contractor, and is therefore not eligible for any group medical insurance.

In 2005, Vicki had surgery for breast cancer. Early in 2006, her medical insurance – a continuation of a policy from her prior job at a furniture company, for which she'd been paying the premiums – ran out. She tried to buy a new, stand-alone policy, but found out that – due to her cancer history – it would cost her $27,000 a year with a $5,000 annual deductible.


So, she's doing without insurance. She's supposed to take pills to protect against recurrence of her cancer. These cost $300 a month. She spaces them out, taking a pill every other day, instead of daily, as prescribed. She also forces herself to get by with fewer visits to the doctor.

More than that, Vicki – who was engaged to be married in June – has decided to postpone marriage, because her fiancé could potentially be liable for her medical costs. He owns a house; she does not. If she were to face catastrophic medical bills, his house could be seized to pay off the debt.

Vicki describes how she feels, every time she stands in front of a medical receptionist's window, unable to produce an insurance card:

"When you go to any medical person and they ask for your insurance card, you are so ashamed because you have to say, ‘I don't have insurance.' You just feel like you are dirt.... What did I do wrong? Why am I being punished? I just don't understand how I could have fallen through this horrible, horrible crack."

So, that's how we treat the sick in this country: like dirt. Our broken health-care funding system forces sick people to extreme measures, like diluting the strength of their prescriptions, postponing doctor's appointments and forgoing marriage. It's beyond unfair. It's immoral.

There, but for the grace of God – and the Presbyterian Pension and Benefits Plan – go I. Tomorrow, I go for a PET/CT fusion scan, with an accompanying set of CT scans. I've been having tests like these every three months. The cost of tomorrow's scans will wipe out my 2007 medical deductible in one fell swoop: I'll pay out hundreds of dollars, all at once. But, I'm one of the lucky ones. It could be many thousands (the actual cost of the tests) - unless I were to do as Vicki has been doing, and decide I simply couldn't afford them.

I'm fortunate because, unlike Vicki, I belong to a gang. It's called Highmark Blue Cross/Blue Shield. From time to time, my gang sends some of their muscle over to my doctor, the local hospital and the outpatient radiology place, and "suggests" how much they ought to charge people like me. Fearing the loss of a big chunk of their business, the medical providers knuckle under. Then, they turn around and raise the rates for individual patients like Vicki, who have nobody to do the "negotiating" for them.

It's a corrupt system. That's the only way to describe it. We're so afraid of universal health care in this country, that we've turned the health-care marketplace over to gangs.

It's not the medical providers' fault. It's the whole system.

It's time for a change. Let's all write our Senators and Representatives. And, the next time we vote, let's remember people like Vicki Readling.

March 2, 2007 - The Write Way To Heal

Today, I run across a news article about a Harvard medical researcher named Susan Bauer-Wu, who’s been working with cancer patients. She’s discovered the exercise of journaling to be therapeutic for the people she’s working with. She calls it “expressive writing” or “journal therapy.”

It’s simple, and about as low-tech as you can get: the only equipment needed is a pen and a notebook. From the article:

“The research suggests that by spending 30 minutes each day for four days to write out their innermost thoughts and feelings, patients can significantly boost mental and physical health.

And experts say nearly everyone who tries journal therapy stands to benefit.

‘Many people are so surprised at how it really works,’ said Bauer-Wu, director of the Cantor Center for Nursing and Patient Care Research at the Dana Farber Cancer Institute in Boston. ‘Even people who were reluctant to do it, who say, “I’m not a good writer, I can't write well, or I don't like to.” They'll go through the process and have that “A-ha” moment. They'll tell us – “Wow, I never realized this about myself, or about this disease – it just came out onto the paper.”’

Expressive writing therapy is just that: Patients are encouraged to express whatever is on their mind, letting their hopes and fears flow out in a natural, unrestrained way. It’s akin to keeping a journal, but more focused on the things that might be bothering you or triggering stress.”

I wonder if maybe that’s what I’ve been doing, in keeping this online journal. My approach is a bit more high-tech than pen and paper, but it’s not all that different. Bauer-Wu is right: I have found it therapeutic to keep a written record of the things I’ve been going through. I doubt if I would ever have begun it, though, were I writing simply for myself. The thought that others (family, friends, and various and sundry web-surfers) might find my ruminations helpful has kept me going, lo these many months.

Some experts are claiming, the article goes on to say, that journal-writing reduces stress and boosts the immune system. Well, I’ve got a cancer of the immune system. It’s not hard to understand why that would be helpful.

Interesting stuff. Now, if I could only get my medical insurance to reimburse me for the cost of my internet access....