February 22, 2011 – It Pays to Shop Around

Here’s an eye-opening statistic: “Most Americans will spend more time comparison-shopping for flat screen TVs than searching for the best doctor possible.”

Kairol Rosenthal, an author who cites this statistic, is a cancer survivor who proudly tells of how she works the system:

“I approach the challenges of the system as if I’m on a personal vendetta. I crush the system like a superhero who has grown a hundred times my size. I sleep at night knowing I have done everything within my power to influence my outcomes. This is my definition of well-being.”

That’s beyond proactive.

Not everyone would put it so zealously, but she’s got a point about the importance of getting second opinions. We don’t survive cancer by just sitting back and waiting for medical professionals to do things for us. We’ve got to question, to research, to learn. We’ve got to insist that our doctors give us the time and information we need to make informed decisions. We’ve got to learn the art of negotiating with insurance companies. We’ve got to keep track of those test results and make sure they get forwarded to the proper specialists. We’ve got to become our own best advocate.

I’ve been fortunate, that way. I feel blessed to have the sorts of doctors who give me far more than the time of day, and aren’t put off by talk of second opinions. But that doesn’t mean I can slack off on my homework.

There is an alternative, of course. We could just sit home and watch that flat-screen TV.

February 19, 2011 – Incidentaloma

A couple weeks ago, I had another of my periodic PET/CT scans, which are becoming as routine as that sort of thing can possibly be. When I called Dr. Lerner’s office for the test results a week later, the nurse called me back and said the PET scan had revealed some unexplained “uptake” on the left side of my thyroid gland, in the area of the small nodule detected last time around.

On that earlier occasion, Dr. Lerner had referred me to Dr. Jay Sher, an endocrinologist. After subsequent tests, Dr. Sher pronounced the nodule too small to be concerned about, and not large enough to biopsy. He did say it bore watching, though.

Well, it’s no longer so small. On Wednesday I had a follow-up CT scan and ultrasound. Yesterday, I got a call from Dr. Lerner, who informed me it’s doubled in size, from about .80 cm to about 1.60. A centimeter and a half still sounds pretty insignificant to me, but I suppose in the world of endocrinology that calls for a closer look.

So, that’s what we’re going to do. As soon as I hung up after Dr. Lerner’s call, I phoned over to Dr. Sher’s office – it was just before closing time – and left a message. Dr. Lerner’s staff is faxing the scan results over. Someone from Dr. Sher’s office wil call back on Monday, presumably with a referral for an ultrasound-guided needle biopsy.

Dr. Lerner assured me there’s nothing to worry about just yet – most thyroid nodules are benign – but, still, it’s not something to leave unexamined.

Doing a little online research, I came upon a retrospective research study that calculated a malignancy rate of 28.8% in small thyroid nodules discovered in this way. I even learned there’s a name for this phenomenon. Abnormalities that show up on scans ordered for some other purpose are called incidentalomas. As high-tech scans proliferate, more and more of these tiny, mostly benign tumors show up – tumors that would, in an earlier era of medicine, have gone unnoticed.

That’s both a good thing and a bad thing. To the extent that incidentalomas turn out to be something truly serious, early detection is a fortunate – sometimes even lifesaving – coincidence. Yet, most of the time they’re just benign growths. Still, they trigger anxiety in patients who would otherwise go through life blissfully unaware of their existence.

I’m not feeling especially anxious about it, myself. I’m more annoyed, I suppose, that I have to go through this whole biopsy thing again. Having stumbled over the rock, though, we’ve got no choice but to turn it over and see what may be crawling around underneath it.

Be Your Own Advocate

"Can you make me better, Doc?"

When we're first diagnosed, that's the question many of us may find rising to the front of our minds - whether or not we ever voice it. We look to our doctors to be healers, to cure our illness, to make us better.

Few of us travel very far down Cancer Road before coming to realize there's a lot more to it than that. There's so much to learn about the disease and its treatments.

I can remember the hours I spent reading Elizabeth Adler's Living With Lymphoma: A Patient's Guide (still the most informative book I've found about the biochemistry of this disease). Suddenly I found myself reading, with great interest, all about the chemical components of human lymphatic fluid - a topic I never dreamed I'd have the least interest in. Having cancer changes that in a hurry!

Today my friend and fellow lymphoma survivor Betsy de Parry published an article, "Candid Cancer: An active role in your care matters." Reflecting on her experience as a long-term survivor, Betsy asks:

"So why not just tell the doctor to fix it? The short answer is that medicine has come much too far and become much too specialized for us to simply be passive participants. In many cases, there are treatment choices, and we can only make sound decisions if we understand them. And aside from cancer's physical impact, there are emotional, practical and day-to-day challenges that we need to face and address....

In fact, if there is one thing I've learned from all the survivors I've talked with over the years - survivors of many types of cancer - it's that many of them are healthy because they became their own best advocates and learned everything they could about all treatment options. Many were told they'd be 'lucky' to be alive in a few years. Others simply refused to accept the next recommended treatment and searched for different options. They talked with other survivors and got second or third or fourth opinions."

So, don't be shy. March into your doctor's office with a notebook in your hand, and demand all the time you need to get your questions answered. Bring a friend or family member if that will help you remember what's said. Four ears are better than two.

Don't be overly considerate of your doctor's ego. It's no insult to say you want a second opinion. Good oncologists are used to this. Those who bristle at the suggestion are the ones you need to watch out for.

Don't be passive. Let your doctor know you want to be a full participant in treatment decisions. Ask for full explanations of why one treatment may be better than another, and ask for time to consider the various options, if that's appropriate. Go to the library or onto reputable websites (like www.cancer.gov) to get the full story (or as much of it as your non-medical mind may be able to comprehend). There are lots and lots of good resources out there that seek to explain cancer so ordinary folks like us can understand it.

Jesus tells an odd little tale in Luke 18:1-8 that's often called the Parable of the Importunate Widow. That's an old-fashioned way of saying, "the Parable of the Pushy Broad." In the story, a poor widow is seeking justice from an unjust judge. He's a jaded bureaucrat who can't be bothered with shuffling case files from his inbox to his outbox any quicker than he absolutely has to. This widow, though, makes a pest of herself. She just keeps knocking on his door until he's obliged to rule on her case. Jesus ends by saying something to this effect: "If even a pushy broad like that can get some action out of a corrupt judge, won't our God of mercy pay even more attention to your prayers?" It's a word to the wise.

So, speak up for yourself. If you don't do it, who will?

Your doctor will respect you for it.

An "N" of 1

I ran across this reflection today, in a Chicago Tribune article, from breast-cancer survivor Catherine Drew Gilpin Faust, President of Harvard University:

"I [remember] my meeting with my physician after the results of the exploratory biopsy. He was telling me what they found and what his thoughts were about what I ought to do.... I'm trying to digest this news, and I start peppering him with questions. What are the percentage chances of this? What are the percentage chances of that? And he answered all my questions, then he said, 'But just remember, whatever you have you have at 100 percent.' And that was such an important comment for me, because I realized, you know, whatever I learned, I was an 'N' of 1, and I had to figure out what that meant within this larger framework of all this information. I also thought it was an interesting thing to have a physician [who was] in a research medical center who was obviously a doctor doing clinical work as well as treatment to be able to remember that, that a patient is an 'N' of 1, not just one in a whole line of statistics. I've often thought of that as I've faced health challenges."

That's a rather perceptive comment on the part of her physician: "Whatever you have you have at 100 percent." Lots of us get stymied by statistics. We get preoccupied by the question, "What are my chances, Doc?" - and by whatever percentage answer the doctor may be so bold as to give us.

I don't fully understand the "N of 1" business. That's mathematics-speak, and I'm not so fluent in that language. I take it to mean, though, that each case is unique. There's no sense buying trouble by assuming someone else's cancer experience will turn out to be our own. Our experience is bound to be different in some way or another, because we're different.

I remember meeting with a friend not long ago, days before he succumbed to his cancer. He was recalling some of the treatment decisions he and his doctors had made along the way. Before deciding on some rather invasive surgery, the doctor had said he felt obliged to tell him that the chances of the surgery being successful were only about 5 percent.

"That's OK, Doc," my friend told him. "I figure I'm going to be in the 5 percent." (He wasn't, as it turned out, but he exercised his prerogative to think that way.)

That was his decision. Other patients in similar situations may decide differently, and I figure that's OK, it's their road they're traveling and no one else's. Yet, my friend chose to exercise his freedom of choice and not let statistics rule him.

He intuitively understood what President Faust is talking about. He knew he was an "N of 1."

The same would go for someone making the opposite choice, even if the odds looked very much better. I've known older patients who declined surgery or treatment when the chances of success were as high as 50 percent. The explanation went something like this: "I've lived long enough, and at my age, I can't expect to live much longer. I choose not to accept the harsh side effects and long recovery the doctors are talking about. Quality of life is important to me. I want to enjoy the days I have left."

According to "N of 1" thinking, that's OK, too.

Yes, there's a lot of science involved in the treatment of cancer. But there's also an art to it.

It's the art of living.

"If I take the wings of the morning
and settle at the farthest limits of the sea,
even there your hand shall lead me,
and your right hand shall hold me fast."

- Psalm 139:9-10

Not the Best Health-Care System

A few minutes ago, I happened to catch a few minutes of news coverage from the U.S. House of Representatives. Members of Congress were taking turns reading from the U.S. Constitution. This was the first time in history, the newscasters informed us, that the entire Constitution has been read aloud on the floor of Congress.

It took me back to my old Sunday School days. Our teacher used to ask us kids to take turns reading through a passage of scripture aloud, with each person reading a single verse.

Have we come to this? I know remarks have been made about the Tea Party movement treating the U.S. Constitution as a fundamentalist might treat the King James Version of the Bible, but when I saw it in action just now, the effect was chilling. John Calvin called the human race "a perpetual factory of idols." It would seem we've found ourselves a new one.

The U.S. Constitution is a remarkable historical achievement, and a model for democracies the world over. It is worthy of our respect and honor. But, to treat it as holy writ? I think there's a reason why this is the first time in history this stunt has ever been pulled: because previous generations - including the framers of the Constitution themselves - had better sense. I can imagine Ben Franklin rolling over in his grave right about now.

One commentator has estimated the cost to taxpayers of this little publicity stunt at $1.1 million.

Let's see, now... what does this story remind me of? Could it be when, in Nehemiah 8, Ezra the scribe reads the law to the people of Israel, freshly returned from exile to a ruined Jerusalem? Isn't it just a wee bit of hyperbole to imply that a mid-term change of party leadership in one of the two houses of Congress is a parallel situation of nationwide repentance from apostasy?

"And Nehemiah, who was the governor, and Ezra the priest and scribe, and the Levites who taught the people said to all the people, 'This day is holy to the Lord your God; do not mourn or weep.' For all the people wept when they heard the words of the law." (Nehemiah 8:8)

Oh, pull-eaze!

What really concerned me, though, was to hear the new Speaker of the House, John Boehner, lambasting the recently-enacted healthcare reform legislation and vowing to repeal it. I don't recall him ever mentioning the words "healthcare reform" without prefixing it with "job-killing." I lost track of the number of times he said "job-killing healthcare reform."

Is that all they've got? Just take their talking-point and repeat it again and again, ad nauseam? I don't recall potential loss of jobs being a major debating point when the legislation was first passed. Why didn't the opposition make a point of it the first time? Even if a significant number of jobs were to be lost because of this legislation - seriously doubtful, but let's grant the point for a moment - is preserving a modest number of jobs worth it, if most of working America continues to be just one medical crisis away from destitution?

Come to think about it, in making the job-loss argument, isn't Mr. Boehner conceding that the healthcare-reform legislation is, in fact, creating a system that's more cost-efficient than the one we've presently got? Wouldn't the elimination of a limited number of administrative-support jobs be, sadly, necessary, in order to accomplish the financial efficiencies that everyone agrees must be the goal if healthcare is to become affordable again?

Mr. Boehner, by the way, is the same man who, in the midst of a debate on tobacco-growers' subsidies in 1995, personally distributed campaign-contribution checks from tobacco lobbyists to his fellow members of Congress on the House floor.

Yes, he did. On the House floor. (He later apologized for it, explaining that it wasn't technically against House rules, then led a campaign to reform the House rules to prohibit what he'd just done. To protect the country from people like himself, I suppose.)

Mr. Boehner went on to repeat another phrase endlessly: "the best healthcare system in the world" - as in "they are trying to take down the best healthcare system in the world."

Mr. Boehner can be admired, perhaps, for his patriotism, but it's blind patriotism when it ignores the facts. The last time the World Health Organization published a healthcare-ratings table of the nations of the world, in 2000, the United States ranked 37th. France was number 1 - something even the conservative magazine Business Week admitted, in 2007, is a pretty impressive achievement.

In claiming the U.S. healthcare SYSTEM is the world's best, our new Speaker of the House is at best mistaken, and at worst engaging in a baldfaced lie. Yes, the healthcare available to certain people in the United States, and to certain well-heeled foreign nationals who fly here for treatment, is among the world's best. Yes, our nation is at the forefront of medical research. But our healthcare system - the overall structure whereby healthcare is delivered to the citizenry at large - is costly, inefficient and just plain broken for huge numbers of sick people. Worst of all, the sicker you get, the more you pay.

(That, by the way, is one thing the author of the Business Week article cited above admires about the French system. In France, the sicker you get, the less you pay.)

I don't seriously think this move to repeal last fall's landmark healthcare bill will succeed. There are still enough votes in the Senate to protect it. Contrary to the anti-healthcare talking-points, a huge majority of the American people still favor it. This is mere political posturing, just as reading the Constitution aloud on the floor of the House is political posturing.

Yet, those of us who are concerned for the health of all Americans - not just the holders of Cadillac medical-insurance policies like members of Congress - ought not to be complacent. This move is a major threat to the health, happiness and survival of millions of hardworking people. It seeks to perpetuate a corrupt system whereby big-business interests siphon off billions of dollars in profits, while poor and middle-income people die unnecessary deaths.

Remember, this is the man who once handed out checks from tobacco lobbyists on the House floor. That shows whose side he's really on.

January 3, 2011 - Just the Facts

Today, I run across an updated fact sheet on Relapsed/ Refractory Follicular Lymphoma from the Lymphoma Research Foundation.

Although my initial staging was "B-cell, diffuse mixed large and small cell," the assumption Dr. Lerner and I have been making is that the relapsed cancer we've been monitoring for the past four and a half years is follicular lymphoma (a small-cell variety). It seems to be behaving in the indolent fashion typical of follicular lymphoma, anyway. After making its first appearance 8 months after my final round of R-CHOP chemotherapy, it's been snoozing.

We've still not been able to get an excisional biopsy of the relapsed cancer. The affected lymph nodes that keep showing up on my scans are not in an easy place to access surgically. There was one attempt to do so, with a swollen lymph node at the base of my neck. That brought me all the way to the operating table, but was called off at the last minute when the surgeon could no longer feel the affected lymph node.

Based on what I've learned about the disease, I'd say the fact sheet is a good one. It reflects some of the latest developments in research. It doesn't mention idiopathic vaccine treatments, though, that are still being researched.

The fact sheet communicates some wonderful news: that, thanks to the energetic researchers working in this field, there is now a range of possible treatments to choose from.

Here's another write-up, from the National Cancer Institute website. One line from that summary of recent research that catches my eye is this one: "For patients randomly assigned to watchful waiting, the median time to require therapy was 2 to 3 years and one-third of patients never required treatment with watchful waiting (half died of other causes and half remained progression-free after 10 years)."

I'm already past the 2 or 3 year median, and have a pretty good chance of landing in the one-third of patients that never require further treatment.

At such time as further treatment may be called for, I think I'd lean in the direction of radioimmu- notherapy (a single dose of Bexxar or Zevalin). Either of those medications seems to me to strike a good balance between effectiveness and quality-of-life issues. I'd rely heavily on Dr. Lerner's recommendation, of course, and would also go for a second opinion with Dr. Portlock, as I did before.

Stem-cell transplant is potentially the most effective treatment of all - but that's riskier, involves multiple side-effects and presupposes that a compatible donor could be found (we've already discovered that neither of my two brothers are a good match, so I'd have to depend on the national donor registry).

So, those are the facts (at this point in time).

December 27, 2010 - Putting the "Death Panel" Myth to Rest

A New York Times article published on Christmas Day reports the good news that sanity has finally prevailed in the halls of government, as further regulations connected with the landmark healthcare-reform legislation enable Medicare funding for advanced end-of-life planning.

This news comes - to my mind, anyway - with a particular sense of relief. Opponents of healthcare reform have cynically and cruelly exploited dying people for their own political gain, by raising up the myth of government "death panels." According to that improbable scenario, government bureaucrats would have played a role akin to that of the infamous Dr. Mengele at the Auschwitz concentration camp (he was the camp physician who decided, with a wave of his baton, which new prisoners would go to the barracks and which would be sent directly to the gas chambers).

What the original legislation, in fact, provided was money to pay for annual doctor's office visits - for those critically-ill patients who want them - at which the various options for end-of-life care would be explained. One significant option is hospice - the part of the medical community in which Claire works, providing bereavement counseling and support.

The recent news is that the Obama administration has quietly restored this funding - not through legislation this time, but through regulation-writing (it had been in the original bill, but was pulled out in reaction to the "death panel" kerfuffle).

I'm especially glad to see this funding restored because of situations I've seen arise time and again in my ministry (and which Claire sees much more often in hers). Far too often, patients avoid having the hospice discussion with their doctors and family members until death is imminent and it's too late for them to derive much benefit from hospice care. When patients' time on the program is measured in hours rather than days, there's not a lot the hospice team can do for them.

Hospice care is not intended to be delivered in such an accelerated time frame. Yes, it's designed for patients who are expected to live fewer than six months, but a lot can be accomplished in that period of time, improving significantly patients' comfort and quality of life.

Talking about hospice is NOT giving up on patients. Quite the contrary, it's about empowering seriously ill patients to live the remaining portion of their lives as they wish. If patients and their families decide to continue aggressive treatment, so be it. If they opt, instead, to go home to a hospital bed in the living room, with advanced pain control and unlimited visits from their grandchildren, then that's their decision and it ought to be respected.

Irrational fear of "death panels" has kept people off hospice care who should have been receiving it much sooner - and would very much have wanted it, had they understood the patient-centered philosophy behind it. This restored funding will allow doctors to plan significant time for consultations that will equip patients and family members to make their own, carefully considered decisions about backing off from aggressive treatment and focusing more on palliative care.

Time and again, I've heard bereaved family members say they wish their loved one had signed onto hospice earlier, but they just didn't have a sense of what hospice is all about until it was nearly too late.

Chalk this one up as a triumph for patients' rights: to make their own, well-informed healthcare choices.

December 23, 2010 - A Champion Gift-Giver

There's lots of talk, this time of year, about gifts and gift-giving, but here's a gift-giving story that will warm your heart. It comes from the sports pages, of all places.

Matt Hoffman is a defensive end for the Rowan University football team, here in New Jersey. Recently he was one of three runners-up for the Gagliardi Trophy, which is given to the most outstanding football player in Division III of the NCAA. It's that Division's equivalent of the Heisman Trophy.

Matt had put himself on the National Bone Marrow Registry's list of potential stem-cell donors some time back. Last November, his number came up. Matt's blood chemistry, it seemed, was a good match for a non-Hodgkin lymphoma patient, a stranger to him, who urgently needed to undergo the transplant procedure.

The only problem was, for Matt to say yes to the request to donate meant he would have to take some powerful medicines, whose side effects would prevent him from playing in the final football game of his Junior-Year season.

The voting for prestigious sports awards like the Gagliardi Trophy is heavily dependent upon statistics. For an outstanding player like Matt Hoffman to miss even a single game is a really big deal. It can mean the difference between being the trophy recipient and being the runner-up (as Matt turned out to be).

Matt didn't hesitate. He told his coach he couldn't play that day, because he had to go into the hospital to donate stem cells. For a stranger.

A few weeks ago - in the moments before the Gagliardi Trophy awards ceremony - Matt had the opportunity to meet the man who received his stem cells. The National Bone Marrow Registry puts a one-year moratorium on sharing the names of recipients, but after that year had elapsed - and with the consent of both parties - they brought the two men together. Matt had the opportunity to meet Warren Sallach, a 59-year-old road maintenance worker from Texas, who continues to be in full remission more than a year after receiving his stem cells.


It was an emotional occasion for both of them. Matt called it "one of the best moments of my life."

I'd be hard-pressed to think of a better gift-giving story than that. Matt Hoffman may be a runner-up for the Gagliardi Trophy, but he comes in first for an even more prestigious trophy, in my book.

Merry Christmas, one and all!

Why I Do It

Sometimes I wonder why I write this blog - why I started it in the first place; why I kept it up during some very difficult days, when I hardly felt up to it; why I keep doing it, more than 5 years after my diagnosis and more than 4 years into watch-and-wait so-called "treatment."

An answer has turned up in Britain's Guardian newspaper, as a psychologist speculates on why people write illness blogs. Here, a fellow cancer blogger, Sue Eckstein, quotes Dr. Tom Farsides:

"I'm just one of many hundreds of people who blog about their illness or trauma, and, according to Dr Tom Farsides of Sussex University, this is not surprising: 'Writing is an effective way of processing and coming to terms with challenging and potentially traumatic events,' he says. 'But blogging is more than the mere act of writing. It also fosters senses of both control and social connection, each of which is crucial for psychological wellbeing.'"

Oh, yeah. That's why.

December 7, 2010 – Remembering Elizabeth

Sad news, this evening, of the death of Elizabeth Edwards. Evidently, in the end it happened very quickly for her, which is a mercy.

The “late unpleasantness” of her husband’s irresponsible behavior has dominated the headlines in the past year or so, and many of us were very sorry to see that burden added to those Elizabeth was already carrying. It speaks to the strength of her character that, through faith and sheer determination, she somehow found the inner strength to be there for her family, to face the television cameras with her head held high and to continue to use her celebrity status to exercise compassion for others.

Her books, in which she candidly shared her life story, have been an inspiration.



Newsweek’s Jonathan Alter, himself a lymphoma survivor, shared a frank exchange he had with Elizabeth about her Christian faith, and the doubts she sometimes experienced, about both her cancer and the tragic, accidental death of her son, Wade:

“When I arrived, Elizabeth told me that cancer had essentially freed her to say whatever the hell she wanted. Then she proved it, by questioning the one thing all presidential candidates and their spouses must embrace - religious faith: ‘I’m not praying for God to save me from cancer. God will enlighten me when the time comes. And if I’ve done the right thing, I will be enlightened. And if I believe, I’ll be saved. And that’s all he promises me.’ But did she believe? Here she went further than any public figure this side of Christopher Hitchens.

‘I had to think about a God who would not save my son. Wade was – and I have lots of evidence; it's not just his mother saying it – a gentle and good boy. He reached out to people who were misfits and outcasts all the time. He could not stand for people to say nasty things about other people; he just didn’t want it. For a 16-year-old boy, he was really extraordinary in this regard. I wish I could take credit for it, but I can’t. You’d think that if God was going to protect somebody, he’d protect that boy. But not only did he not protect him, the wind blew him from the road. The hand of God blew him from the road. So I had to think, ‘What kind of God do I have that doesn’t intervene - in fact, may even participate - in the death of this good boy?”

That’s so like Elizabeth Edwards. She always told it like it is. Unlike so many people in public life who live elegantly fabricated lives, she was real.

Elizabeth will be well-remembered by those of us in the cancer community as a determined survivor, an encourager of others, an activist for change - and yes, a woman of faith. Let us offer prayers of thanksgiving for her life and witness.

December 2, 2010 – 5-Year Cancerversary

Hard to believe it’s been five years already, but it has. Five years ago today, I was diagnosed with cancer.

So much has happened since then. Those early days of uncertainty and fear, knowing that life would never be the same again. Telling the kids. Telling the church. Arranging for time off, to coincide with the predictable valleys in the chemo cycle. Persistent thoughts of dying, even though Drs. Lerner and Portlock and everyone else in the know kept assuring me I have one of those so-called "good" cancers - one that usually responds to treatment.

Once the treatment train had left the station, it picked up speed incredibly fast – or so it seemed. One day, I was given the news. The next, I was being wheeled into an operating room to get my port implanted.

My story didn’t unfold quite that fast, of course. That was just the way it felt to me. There was actually about a month between diagnosis and my first dose of chemo. I can’t recall much of what I did during that time. Once cancer enters your life, it’s hard to think of anything else. I felt numb.

Used to be, patients who reached their five year cancerversary without recurrence were considered cured. I still run into people who think that’s the case. In reality, cancer is such a multifaceted phenomenon that it’s impossible to generalize.

In my case, remission only lasted eight months – although, in truth, the cancer was probably there all along, lurking below the radar of those high-tech scans. “Watch and wait” was Dr. Lerner’s recommendation, confirmed by Dr. Portlock. Just sit tight. No need to shoot any arrows from the quiver until we absolutely have to. You have no symptoms. So, just sit tight. Trust us. This really is a sensible approach, even though it sounds like lunacy.

So, here I am today. Still watching and waiting. I’ve no idea how long it will be before the burgeoning population of cancer cells will reach umpteen million (or whatever the magic number is) and we’ll be discussing which treatment to try next.

Already, there are NHL treatments out there that weren’t available at the time I was diagnosed. Most aren’t quite ready for prime time, but it won’t be long now. Chances are, by the time we’ll be thinking seriously about treatment again, there will be some options available that weren’t even conceived at the time I was first setting out, five years ago.

There’s reason for hope, to be sure. Lord willing and the blood counts don’t rise, I’ll be here to observe quite a number of cancerversaries yet to come.

November 18, 2010 – Help! I’m a Market Segment

I ran across this link recently, describing a subscription newsletter issued by a financial-information firm, communicating the latest news and statistics on “the global NHL market.”

Yes, that’s right. The “NHL” in “NHL market” refers to non-Hodgkin lymphoma. There are actually financial analysts out there who make it their business to study the strength of companies developing drugs and other therapies to treat NHL.

We all know that health care in this country is profit-driven, but this displays the seamy underside of that reality. Some of these technological developments tracked by this service represent life and death for people like me. We follow this information in order to stay as healthy as we possibly can. Subscribers to this newsletter follow the same information in order to make a buck. Lots of bucks, actually.

I read this stuff and I end up feeling vaguely dirty, for no particular reason. How does it strike the rest of you, especially folks who are dealing with cancer?

November 7, 2010 – Gratitude on the Radiation Table

Paul Bresnahan is an Episcopal priest who served with me on the writing team for the internet sermon resource, The Immediate Word, back when I was working as the team’s convener. Recently I came across a blog post of his, reflecting on his own cancer experience. Here's an excerpt:

“Prostate cancer struck me well over a year ago, and I have been living with Jesus as I always have and then journeyed through surgery and now radiation. God has given me the privilege of sharing my journey with others who gather with me in the waiting room at Massachusetts General Hospital in Boston. We share our joys and sorrows, our hopes and our fears, our aches and our pains.

We cheer one another along. Last week when I was called for a radiation treatment, I quipped: ‘My turn to shine.’ My companion for the day told me that the entire waiting room erupted in laughter as I left the room. ‘Who is that man?’ several asked. ‘He is my parish priest,’ was the proud answer. And thus the witness to Jesus' love and healing touch tickled those within the Cox Center for Cancer Treatment at one of the world's great hospitals.

Inside the treatment facility, as I lay on the table with a giant metal fork rotating around me and beaming its rays within my body, I saw the hand of God and sensed a healing touch within me. I saw no vision other than the hand of science and medicine ministering to me out of the gifts God so generously bestows upon the care giving community in my home city. The beaming rays of radiation give me the gift of healing and of life, and I am brim full of gratitude.”

It’s so true that the eye of faith can sometimes glimpse the hand of God in all kinds of things. Even a piece of radiation therapy equipment.

October 29, 2010 – On Meeting Oneself

Yesterday, my 54th birthday, I caught a National Public Radio interview on the car radio with singer/ songwriter Sheryl Crow. Amidst the usual light chat about music, songwriting and the like, the interviewer asked Sheryl about her experience as a breast cancer survivor. She had this to say:

“Once I was diagnosed, once I was handed that diagnosis, it was very apparent to me that my life was never going to look or feel the same to me again. And... my lesson... in my diagnosis and laying on the radiation table every single morning for seven weeks was, nobody can take care of me but me. And I wasn't doing that. I was putting everybody's needs before me and, so it was really, you know, I met myself on that radiation table every day and I had to reflect and had to remember who it was I came in as, and had to really sort of redefine my life.”

The line that jumped out at me at the time was: “I met myself on that radiation table every day.”

That sort of thing is part of the cancer experience, especially during treatment. The diagnosis crashes in, like a bolt out of the blue. The normal, everyday activities of life come to a screeching halt. Suddenly, it’s just you, your medical team and your treatment.

Mostly you, though. And a whole lot of time.

You have time to think. To reflect. To reconsider. You may not feel real great, and that may keep you from doing some of the activities most of us usually fall back on, to keep busy and avoid introspection – reading, media, computer. The thoughts flow wild and free. No scenario’s left unturned, when it comes to imagining the worst possible outcomes.

Somehow, out of that chaotic mix there arises a new synthesis. The new normal. We haven’t chosen it, but there it is. At the end of the day, it’s our normal, so we’ll take it. It beats the alternative.

I hear you, Sheryl. What you say is so true.

October 10, 2010 - A Doctor Who Gets It

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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

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

October 9, 2010 - Comic Relief from The Onion

OK, this one's a bit out of the ordinary for my blog, but I can't resist posting a link to this "news" story from The Onion, the internet satirical newspaper. It's called "Teen With Cancer Vows It Won't Keep Her From Being Mean, Moody Little S**t."

(Sorry for the profanity, both in the headline and in the article, but you'll see how it makes literary sense in this case.)

The article gave me a good chuckle, but it also points out how we who have cancer are who we are. The disease strikes randomly, without regard to personal virtue (or lack thereof).

It's also a sly send-up of all the adulatory talk that goes on about people with cancer. When you get the disease, you find that people are a little more inclined than usual to say complimentary things about you.

Was anyone ever lauded for approaching their so-called "battle" with cancer like a total weenie? I'm sure many have taken precisely that approach. But they never say anything about that when they're hanging the medal around your neck at the Relay For Life.

Don't get me wrong. Cancer can be transformative. I believe it has been in my case, and mostly for the better (although - true confessions time - four and a half years later, I could stand to ditch the procrastinating, devil-may-care approach to personal financial management that I fell into during my chemo-treatment days).

For all the times we survivors may joke about "playing the cancer card," the diagnosis doesn't give us a free pass for treating others with disrespect.

I suppose the experience of dealing with cancer does lead some of us to rethink, maybe even reform, our lives. Others, maybe less so.

Are we somehow obliged to approach our disease like the opportunity for transformation it just may turn out to be? I don't think so. It's an individual thing.

We all do well to try to avoid judging others in that regard. Those who want to take the weenie approach have every right to do so. And they probably still deserve a medal around their neck.

Deep down, I'm enough of a Calvinist to believe that we're all sinners, and that chemo and radiation have little effect on that particular malady.

That cure lies elsewhere.

October 5, 2010 - This Is the Day

This excerpt from a Presbyterian News Service release tells the story of the death several days ago of singer/songwriter David M. Bailey:

"David M. Bailey, a singer/songwriter who moved audiences as much with his story of personal courage in the face of terminal cancer as with his music, succumbed to Glioblastoma on Oct. 2 in hospice care near his home in Charlottesville, Va. He was 44.

The son of Presbyterian missionaries, Kenneth E. and Ethel Bailey, Bailey was raised in Beirut, Lebanon. He spent some of his youth in Germany — where he learned to play the guitar and began writing songs — before returning to the United States....

In July 1996, he was diagnosed with Glioblastoma, a particularly virulent form of brain cancer. He then quit his corporate job and turned to songwriting and performing full-time.

'They told me I had six months. They were wrong,' Bailey said. 'Despite what you might hear, hope is a very real thing, and with every passing day, there are more and more reasons to hope.'

For 14 years he defied that diagnosis, writing and performing virtually non-stop, covering 45 states and 21 countries. His concerts were deeply personal, brutally honest accounts — rendered in a musical style that has been compared to James Taylor and Cat Stevens — of his struggles with his illness and his determination to make the most of whatever time God gave him.

His signature tune was 'One More Day.' The chorus goes:

'One more day when you can hold your children
One more day you can hold your wife
One more day when you can watch the grass grow
One more day when you can live your life.'"

It calls to mind the familiar scripture verse: "This is the day that the Lord has made; let us rejoice and be glad in it." (Psalm 118:24)

It's a lesson David taught us: how to live in the now, praising God for all good gifts. His music - and that lesson - will live on, through his recordings.

Prayers and good wishes go out to his family.

September 29, 2010 - Watch Those Cancer Cells Get Zapped

Thanks to Betsy de Parry for posting a link on Facebook to an animated slide show about how targeted therapies (like Rituxan, the drug I received) first locate, then take out, cancer cells.

It's on the website of the National Cancer Institute. The presentation is in a lot of different segments. You need to click on the links in the menu to the right to move on to the next one.

It's nice to see those cancer cells getting zapped, even if it's only an animation!

September 15, 2010 - WLAD

Just what I need - another acronym in my life!

(Just kidding.) Actually, I'm glad to talk about this particular one. WLAD stands for World Lymphoma Awareness Day, which happens to be today.

And to think I almost missed it!

Not that it's any great celebration. It's just one of those education-and-p.r. vehicles, beloved of medical educators and professional fund-raisers.

There's clearly a need for it, though, because of statistics like these:

* Less than 50 per cent of people know anything about lymphoma, despite the fact that it's the 5th most common cancer, worldwide.

* Almost three quarters (74 per cent) of people don't even know that lymphoma is a form of cancer.

Check out the "Know Your Nodes" online mini-quiz, if you haven't already.

It's hard, sometimes, for survivors like me to explain lymphoma to others. It's a cancer, yes, but as a systemic (rather than localized) cancer, it can be hard for people to understand why the doctors can't just go in there with a scalpel and cut the bad stuff out.

It's also not influenced by any causal factors, like smoking or poor diet or exposure to environmental toxins (at least, not any cause that researchers have been able to puzzle out).

Apart from the occasional swollen lymph node protruding from the base of the neck or maybe in the armpit, if there are symptoms, they're invisible to most casual observers. Lots of people with lymphoma don't LOOK sick - except when they're getting chemo treatments, which can make them look a lot sicker than their disease ever did.

There are a lot of us around the world who have it, though, and it IS life-threatening (although, thankfully, we've got a whole lot of effective treatments that can keep it at bay for a very long time, even if some forms of it can't be cured).

So, Happy WLAD, everyone.

Be aware. Be VERY aware.

And do enjoy what's left of this beautiful fall day!

September 11, 2010 - 9/11 Every 2 Days

That's the title of an article by Betsy DeParry, whom I've come to know a bit through the online lymphoma community, and through reading her cancer memoir, The Roller Coaster Chronicles. What she's referring to is a well-publicized statistic that 1,500 people die every day from cancer in this country. Approximately 3,000 people were killed in the 9/11 attacks, which means cancer brings about another 9/11 every couple of days.

Cancer doesn't garner the same level of response - and understandably so, from a psychological standpoint. The 9/11 attacks were sudden, brutal, inhuman - and completely unexpected for most Americans. They turned life in our country on its head, and we're still living through a lot of the aftermath.

We're wrapping up one war and still deeply embroiled in another. After conducting those wars in a way our nation has never prosecuted a war before - essentially putting the costs on a credit card, neither raising taxes nor asking for financial sacrifice from the general public - our economy is in a shambles.

More than that, a lot of us are living with a level of fear and anxiety we've never known before. The contentious, fear-driven debate over the construction of the Park 51 Muslim community center in lower Manhattan - not to mention the media's hysterical response to the bigoted wing-nut minister who wanted to hold a Qu'ran-burning party - is ample evidence of that.

I understand the Federal budget is so loaded down, now, with expenses for national security - and those programs are being administered by such a vast, disconnected profusion of agencies, funded in some cases by money from secret budgets - that no one really knows exactly how much we're spending, nor for what.

Betsy doesn't make any observations like these in her article - they're my own, and I'll claim them - but she does recall how, ironically, it was on the anniversary of 9/11 several years back that she received the single radioimmunotherapy (RIT) treatment that has kept her cancer-free ever since. For her, personally, 9/11 is a day of celebration.

That, of course, is an ambiguous legacy, as she herself reflects:

"Yet eight years after winning FDA approval, the two RIT drugs are still caught in the health system's for profit stranglehold that has limited access to between 5 and 10 percent of the patients who might benefit from them. That's like sending the finest emergency crews and state-of-the-art equipment to rescue 5 to 10 percent of the victims of any tragedy and sending the bucket brigade to help the rest. Wouldn't we all be outraged? Just as maddening, targeted therapies like RIT have been hailed as the future of cancer care, but interest in developing RIT drugs for other types of cancer has waned because the RIT drugs for lymphoma have not been commercially successful.

Cancer claims 1,500 Americans every day. That's 9/11 every two days. And it's simply unacceptable, especially when lifesaving treatments like RIT are available for some.

Yes, I'm grateful that eight years ago today, RIT restored my health and kept my family whole, but my celebration is tempered with respect for the families who lost loved ones on that tragic morning a year before RIT rescued me. And my individual triumph over cancer is overshadowed by sorrow for the families who will suffer so long as profit takes precedence over people."

Are we really saving lives with all the wild spending on domestic-security programs and research into arcane military technologies, many of which may never see the light of day on a battlefield? No one can say. Yet, it's far more certain that the money we're NOT spending, as a nation, on delivering health-care technologies we've already developed and tested to sick people who truly need them is causing more deaths than any terrorist attack ever did.

On 9/11, let us honor the memory of those who have died, and the pain of those who miss their loved ones still. Yet, let us also redouble our efforts at bringing life and health to those who can still be saved.