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!

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.

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?

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.

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 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...

August 22, 2009 - Laughter Yoga

This little video is endearing – and not just because it features the always-amusing John Cleese as narrator. I’ve heard of India’s “laughter yoga,” but have never actually seen it before, in action.

I figure this stuff has got to be therapeutic – but, if nothing else, it looks like great fun:



I’m especially intrigued by the observation that it doesn’t seem to matter whether the laughter is forced or natural: the therapeutic benefit is the same.

Of course, as the doctor points out in the video, even if participants are forcing their laughter at first, after a few moments of looking at all those goofy faces, only a rock could keep from laughing in response.

Maybe laughter really is the best medicine.

July 15, 2009 - A Common Story

Last night, Claire and I, along with our daughter Ania and niece Elizabeth, went to a midnight premiere of the film, Harry Potter and the Half-Blood Prince. It did not disappoint.

We’ve been fans of the Harry Potter books for some time, and have eagerly awaited each film as it’s come out.

I was struck by how many people showed up at our local multiplex (they were showing the film on at least two of their screens, possibly more). It’s a remarkable thing how many people of all ages have come to know and love these stories: enough to fill cinemas across the country till half-past three in the morning – and on a workday, at that. Judging from the comments we overheard, a great many of our fellow Potter-o-philes are very familiar indeed with minute details of J.K. Rowling’s teenage-wizarding yarn.

It’s a great thing to have a common story.

I was led to wonder how many people, in these days of secularism, feel such a passionate connection with the biblical story? Once upon a time, novelists, playwrights, screenwriters and other creative types could assume their audience could easily recognize biblical allusions. For example, I’ve been listening to a recording of Steinbeck’s great novel, East of Eden, as I drive around in the car. The book’s loaded with biblical symbolism. Were Steinbeck writing today, would he bother to tie his story so closely to archetypal biblical tales like that of Cain and Abel? Would his readers care?

The success of the Harry Potter oeuvre – and Tolkien’s Lord of the Rings before it – speaks to this secular culture’s hunger for a common story, a deeply moral tale grounded in religious sensibilities.

Every time I attend my monthly Leukemia and Lymphoma Society support group (and it’s been several months now since I’ve been there, due to schedule conflicts), I’m impressed by the power of the common story we cancer survivors share. The details, diagnoses and treatments may differ, but there’s a deep well of common experience. In a very real way, the story of my fellow group members is my story too.

Yes, it is a great thing to have a common story.

June 25, 2009 - Farrah, Jane and "Let It Be"

News has just come through, today, of the death of actor and model Farrah Fawcett. I wrote about her cancer struggle in my May 16th blog entry. Her television documentary, Farrah’s Story, was a graphic account of the last months of her life.

While the film attracted some negative comments from critics, who branded it as reality-show exploitation, I saw it differently. It seemed to me a courageous (although rough-around-the-edges) statement from a dying woman whose deepest desire was to “not go gentle into that good night.”

Sure, Farrah’s story was hardly typical. She was an enormously wealthy woman with the means to jet all over the world seeking alternative cancer treatments. She was also more vocal than some about the problem of how cancer was affecting her physical beauty (hardly surprising in a woman who, in her prime, was a fashion icon). Yet, whose cancer story is ever typical, anyway? We’re all individuals, and in our respective responses to this disease we each display our own interior beauty.

This morning I walked across the street to St. Mary’s By-the-Sea Episcopal Church to attend the funeral of a neighbor, Jane, who died at mid-life after having been diagnosed about a year ago with a pretty-much untreatable form of cancer. She left behind two teenage daughters and a whole churchful of friends.

Jane designed the funeral service herself, down to every last detail. While it wove in and out of the Book of Common Prayer liturgy, the musical selections and personal testimonies were hardly typical funeral fare. We sang along with the choir to Pete Seeger’s “Turn, Turn, Turn” and listened to a talented guitarist sing the jaunty medley of “Somewhere Over the Rainbow” (as styled by the by the late Hawaiian singer Israel Kamakawiwo’ole) and “What a Wonderful World” that’s been making the rounds of indie singers.



We finished by singing the Beatles’ “Let It Be” – a baby boomer anthem if ever there was one. I’ve always heard the song’s mention of “mother Mary” was inspired by a dream Paul McCartney had of his own mother, whose name was Mary. After checking it out on Wikipedia, I learned his mother died when he was 14, of cancer. As she came to Paul in the dream, he was blessed with an overwhelming feeling of comfort and peace. According to Wikipedia, he later told an interviewer: “It was great to visit with her again. I felt very blessed to have that dream. So that got me writing ‘Let It Be’.” Speaking to another interviewer, he shared how in the dream his mother had comforted him: “It will be all right, just let it be.”

Some have assumed, I know, that “mother Mary” in the song must surely be Mary, the mother of Jesus, but of course that’s not the case. So, it doesn’t make sense, as some have done, to sing it in church as a celebration of that Mary. It turns out, though, in this context, “Let It Be” has a compelling personal (if not exactly liturgical) rightness.

From what I know of Jane – a deep-thinking, highly organized person – it’s likely she knew this story, and included it in the service for that reason. It’s the message she would have wanted her own daughters to take away from the experience of losing their mother:

“And when the night is cloudy,
there is still a light, that shines on me,
shine until tomorrow, let it be.
I wake up to the sound of music, mother Mary comes to me,
speaking words of wisdom, let it be.”

May 16, 2009 - Farrah's Story

It’s hard to believe it’s been a week already since my last blog entry. Life has been overflowing, of late – not so much with rich and wonderful experiences as with the sort of minutiae that distract from the main thing.

Anyway, last night I did manage to take some time to view Farrah’s Story on NBC TV. For several years, Hollywood celebrity Farrah Fawcett has had anal cancer that’s now metastasized to her liver. Her prognosis is not good. For the past couple years, she’s brought a video camera along on most of her medical visits. Her intention, at first, was simply to keep a personal record of the complex medical information the doctors were feeding her, but eventually it occurred to her to make a documentary out of the footage.

This is the program that premiered on NBC last night. As the documentary airs, she’s no longer receiving chemotherapy, but is said to be receiving other anti-cancer drugs. It does seem, sadly, that her doctors have just about run out of options.

The film records Farrah saying, long before she reached this stage in her treatments: “So I say to God – because it is, after all, in his hands – ‘It is seriously time for a miracle.’”

It’s a gritty, realistic documentary. It pulls few punches in displaying the pain and exhaustion that so often go along with aggressive cancer treatments. So eager was Farrah to receive the most cutting-edge treatments that she left the care of her Los Angeles doctors for a time, and flew to Germany. There she had found a surgeon willing to undertake the tricky removal of her anal tumor, as well as another doctor who was willing to directly destroy her liver tumors, one by one, with a painful laser ablation treatment that involved sticking needles directly into her abdomen.

Farrah evidently wanted to show it all: a rather surprising move, for a movie star who’s spent her life carefully managing her public image. “There were things that I thought were too invasive to film,” Farrah’s friend and collaborator Alana Stewart explained, in an interview. “But Farrah said, ‘Film it. This is what cancer is.’”

The treatments seem to have bought her some time, little more. Hers is the story of a cancer survivor who's determined to do everything possible – even pushing the limits of the possible – to aggressively turn back her disease.

Because Farrah Fawcett is who she is – a world-famous celebrity, and a very wealthy woman – she has access to treatment options few other patients can consider. The film portrays her flying back and forth to Germany on a chartered jet, and staying, during the time of her treatments, in a picturesque alpine chalet that looks like it comes straight out of Heidi. Here’s a woman who’s lived her adult life at the pinnacle of privilege, but at the end of the day, she’s like any other cancer patient. Cancer is a great leveler, that way.

Towards the conclusion of the film, Farrah even loses her trademark mane of blonde hair. I found it a strange experience to watch some of her close friends describing what a horrible sacrifice this was for her, as though a coiffure were life itself – but then, I had to remind myself, these are Hollywood people. Their aging faces display the craft of the cosmetic surgeon. For them, physical beauty takes on disproportionate importance. It seems less so for Farrah herself, actually, than for those around her.

In the film, Farrah’s longtime companion Ryan O’Neal pays tribute to her inner beauty – and that’s the impression I’m left with, from this rather roughly-edited, but very realistic film. Farrah’s Story is the tale of a survivor. Whether or not she gets the medical miracle she tells God it’s “seriously time for,” there are miracles aplenty of strength, perseverance, community and love.

March 2, 2009 - Power of Blog

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

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

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

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

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

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

No, no and no.

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

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

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

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

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

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

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

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

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

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

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

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

December 30, 2008 - Christmas Haste

Christmas has come and gone, without a blog entry. That’s mainly a function of my being so busy.

It was a good Christmas. Ania was back from Chapman University for the holidays, and Ben continues to be living here at the house, as he works full-time giving guitar lessons. My mother, Shirley, is now living back in New Jersey, having moved up here from North Carolina in September. Brother Jim came down from Boston for the holiday. From Claire’s family, we welcomed her sister Eva and her daughter Elizabeth (who also live in our house), as well as her brother Victor from Baltimore, with his kids, Chelsea and Nick; and Claire’s sister Ramona, from New York City. There were a few friends here, besides.

It made for a full table at Wigilia, the traditional Polish Christmas Eve vigil supper from Claire’s family tradition, which we somehow squeeze in between the 7:00 and 11:00 pm Christmas Eve services. (Here’s a picture of Claire spreading some straw on the dining-room table, assisted by Murphy the cat – the straw goes under the tablecloth, and is symbolic of the straw of the manger.)

A few days before the holiday, we had about 30 members of the Youth Connection group here for pizza and snacks, after their annual Christmas caroling expedition to homebound and nursing-home folks.

As for the Christmas Eve services, we had the usual children’s service at 4:00, followed by Candlelight Services of Lessons and Carols at 7:00 and 11:00. My sermon, “A Hasty Christmas,” focused on that line from Luke’s Gospel that describes how the shepherds “went with haste” to Bethlehem.

It’s a perfectly ordinary phrase, but to me it seems to offer a basis for reflecting on how many of us tend to approach the holiday. There are two kinds of haste: the stressful kind that pushes you, and the wondrous kind that pulls you. While the shepherds may have had good reason to fear the angels (who, in good biblical tradition, were anything but gentle emissaries of sweetness and light), I like to think they rushed down off that hillside because of the wonder of Word-made-flesh that was apparent in that humble stable.

From the sermon:

“There is another kind of haste, besides the sort that pushes us. There’s also the haste that pulls us. It’s the same sort of haste grandparents feel, as they’re waiting in an airport lounge to go visit their new grandchild for the first time. It’s the sort of haste a young man feels, when he’s off to pick up that special young lady to take to the prom. It’s the sort of haste that says, ‘Come on, let’s go – every minute we delay is a minute we won’t be there!’

It’s the sort of haste we’ve all come to know, when Christmas is at its very best. It’s not the tyranny of the to-do list, but the joy of a churchful of people singing carols; the glow of the candlelight, passed from hand to hand during ‘Silent Night’; the swell of the organ, as we roll into that first stanza of ‘O Come, All Ye Faithful.’ It’s the sort of haste that beckons us onward, that wins cold hearts over, that pulls us out of the December doldrums and sets us gently down into a holy place, a place of light and love and faith.”

One of my growing edges, in these days of watch-and-wait monitoring of my lymphoma, has to do with maintaining the right kind of haste in my life. Better to be pulled than pushed. Better to be motivated by wonder than by worry.

It's a tough balance to maintain – but I’m working on it.

August 19, 2008 - Wind Is Relative

This evening, Claire and I go for a moonlit sail on the Toms River, on the boat owned by our friends Myrlene and Eric. We’re also joined by our friend Bill, the executive presbyter of Monmouth Presbytery.

Myrlene and Eric invited us on a similar trip about 10 months ago, but not at night. This cruise is timed for optimal enjoyment of both sunset and moonrise. Conditions tonight are near-perfect. The moon is just past full. The vision is glorious.

Last time we sailed, I was struck by the fact that sailboats need to tack in order to get much of anywhere (see my October 3, 2007 blog entry). That means they proceed in a zigzag fashion. That seemed to me symbolic of the sort of progress I’m making as a cancer survivor. Straight-ahead movement is not always possible. Sometimes tacking is the only way to get there.

This evening, Eric gives us another lesson. As I’m standing behind the wheel, steering the boat under his supervision, he explains what it means to “fall off.”

This nautical expression doesn’t mean stepping off the side of the boat and ending up in the drink. It does mean to turn the prow of the boat away from the direction of the wind. The opposite of “fall off” is to “head up” – to point the prow in the direction from which the wind is coming.

Perhaps the most important item of information a sailor needs to know is the direction of the wind. As Eric gives me tips on which way to point the boat so we stay in the channel, he doesn’t just say, “Turn right” or “Turn left” (nor even “Turn to starboard” or “Turn to port,” as I would have expected). The language of absolutes is not useful here. The wind changes, as does our position relative to it. Other realities – such as the location of the channel and its marker buoys – do not. They belong to the earth. Our mast and sail, pointed heavenward, belong to the sky. Our forward progress depends on our constantly adapting to breezy, insubstantial realities. Keeping the boat in the channel involves a multitude of small adjustments, based on numerous relative factors – chief among them being wind direction.

Scripture speaks of the Holy Spirit as wind. The Hebrew word ruach and the Greek word pneuma both mean “breath” or “wind.” As we navigate through any of life’s challenges – but especially the challenge of living with cancer – we need to remain aware of the touch of the wind upon our face. Always we seek to discern the direction from which the Spirit-wind is blowing.

That wind varies in intensity. Sometimes it’s a soft kiss upon the cheek. Other times it’s gale force, unmistakable. The wind also varies in direction. Sometimes we feel it on our face; other times, from the back. Whichever way the wind is blowing, some forward progress is still possible – just not always by the most direct route.

Sometimes we fall off. Other times we head up. Whatever the case, we need to heed the lessons of the wind, and adjust our progress accordingly.

June 29, 2008 - Reflections of a Pancreatic Cancer Survivor

The other day I came across an article written by the Rev. Bill Forbes, a fellow Presbyterian minister. Bill’s a member of a highly exclusive club: pancreatic cancer survivors.

Bill used to be pastor of a large church in northern New Jersey. Shortly after leaving that position to become a vice-president of our denomination’s Board of Pensions, he was diagnosed with pancreatic cancer, and given just months to live. Now, more than two years later, he’s still with us. So far, he’s beating the odds.

The article Bill wrote appears in The Presbyterian Outlook – a small, independent magazine not widely known outside Presbyterian circles. His thoughts on survivorship are wise, and deserve to be more widely known.

Here are some things he says pancreatic cancer has taught him.

“Each and every day of life is a gift.”

“My effort to live a life and ministry of encouragement shapes my life today as never before.... Pancreatic cancer has assisted me, indeed it has endowed me, with a mandate to re-order my priorities. I don’t ‘sweat the small stuff’ nearly as much as I used to!”

“Prayer shapes and guides my life more than it did pre-diagnosis.”

When people learn that a friend has cancer, they often feel at a loss for words. Here’s what Bill suggests they say:

“When you know of someone who faces challenges – a serious illness, a family tragedy, a professional crisis, or a personal conundrum, don’t avoid them! Avoidance is tantamount to isolation. When someone faces the direst need, there is a tendency to feel forgotten. Questions such as ‘Why hasn’t your hair fallen out?’ or ‘What caused your situation?’ or ‘What kind of treatment will you have next?’ or ‘What is your prognosis?’ or ‘How are you handling the loss of your job, your spouse, your child, your... ?’ translates into ‘How does it feel to be without hope?’ And that’s not what those who suffer need.

Each of us has suffered or will suffer at some time in our lives. The Book of Job was a preview of what can happen to the most faithful and to the least faithful. Yet, the greatest gift we can offer to one another is encouragement – encouragement through spoken or written word, through deeds however small or gracious, through intercessory prayer and through the kindness of recognition: ‘I know this is a difficult time for you and I am holding you in daily prayer.’ God’s gift of life is truly amazing!”

Just one more example of how cancer changes a person.

June 20, 2008 - At the General Assembly

I’m in California, attending the Presby- terian Church (U.S.A.) General Assembly in San Jose, and staying with my brother Dave at his loft apartment near Berkeley.

The General Assembly is a great place for reunions with friends from around the church. In the exhibit area, I encounter Barb, a friend of ours from the days when I served as assistant dean and director of admissions at the University of Dubuque Theological Seminary in Iowa. I hadn’t seen nor talked to Barb for four years – since the last General Assembly I attended, actually.

Barb hasn’t heard of my cancer history, so I fill her in. She updates me on a health crisis she faced, as well – about the same time as I was undergoing chemo, it turns out. In her case, it was a kidney infection that turned into a blood infection that nearly killed her. It was touch and go for a while.

Barb is a spiritual director, and interested in healing ministries. She’s a leader in the Order of St. Luke, an ecumenical community of Christians who practice healing prayer. She tells me in some detail how, as she was lying in a hospital bed, drifting in and out of consciousness, she had a vision of descending into a sort of dark cavern, that she was sure would lead to her death. Then, she felt the power of countless prayers of believers who were praying for her. Those prayers were like strong arms grabbing hold of her and pulling her back up into the light.

She wasn’t afraid to die. She felt oddly indifferent to that possibility. I tell her I had something of the same feeling around the time of my initial diagnosis, when the thought hit me that my life could be significantly shorter. I felt sadness over experiences I would have missed, but as for death itself, “It is what it is, and if that’s what it is, so be it,” I tell her.

Barb acknowledges she felt much the same.

Barb was in her late 70s at the time she was going through this. I was 49. Yet, I don’t think age has a whole lot to do with it. Our experiences were similar.

We look at one another, slowly nodding our heads. We’ve been to the same far country, and the journey has changed us, in ways we’re still coming to understand.

And some think the General Assembly is only about ecclesiastical politics...

April 26, 2008 - Comfort and Strength

I’ve subscribed, this month, to a short-term “e-course” on Spirituality and Illness, through the website, SpiritualityAndPractice.com. There are brief, daily readings that arrive by e-mail, and an online message board participants can use to communicate with one another. Yesterday’s topic was “Find a Source of Comfort.” I was struck by the following excerpt from a book, No Enemies Within: A Creative Process for Discovering What’s Right About What’s Wrong, by Dawna Markova (Conari Press, 1994):

“When I was in the hospital, the one person whose presence I welcomed was a woman who came to sweep the floors with a large push broom. She was the only one who didn't stick things in, take things out, or ask stupid questions. For a few minutes each night, this immense Jamaican woman rested her broom against the wall and sank her body into the turquoise plastic chair in my room. All I heard was the sound of her breath in and out, in and out. It was comforting in a strange and simple way. My own breathing calmed. Of the fifty or so people that made contact with me in any given day, she was the only one who wasn't trying to change me.

One night she reached out and put her hand on the top of my shoulder. I'm not usually comfortable with casual touch, but her hand felt so natural being there. It happened to be one of the few places in my body that didn't hurt. I could have sworn she was saying two words with each breath, one on the inhale, one on the exhale: ‘As... Is... As... Is...’

On her next visit, she looked at me. No evaluation, no trying to figure me out. She just looked and saw me. Then she said simply, ‘You're more than the sickness in that body.’ I was pretty doped up, so I wasn't sure I understood her; but my mind was just too thick to ask questions.

I kept mumbling those words to myself throughout the following day, "I'm more than the sickness in this body. I'm more than the suffering in this body." I remember her voice clearly. It was rich, deep, full, like maple syrup in the spring...”

I’ve been thinking about that word, “comfort,” ever since. It’s built from the Latin word fortis, which means “strong.” To comfort others is, literally, to make them strong. It is to build a fort around them, so they may withstand whatever threat may come.

It’s what that nameless Jamaican cleaner did for the woman telling the story. It’s significant to me that she was the only one who came into that hospital room without a specific, healing task to perform (at least, as “healing” is typically defined by the medical professions). Yet, this woman - an angel, really - had a way of healing by her very presence.

We’ve pretty much lost that sense of the word, in our culture. “Comfortable” has degenerated into “comfy” – as in a comfy chair. When we speak of “creature comforts,” we usually mean something that makes us softer, rather than stronger.

It calls to mind these famous words of the prophet Isaiah. They mark a continental divide in that biblical book, as the prophet changes from confronting a sinful people to comforting an exiled people:

“Comfort, O comfort my people, says your God.
Speak tenderly to Jerusalem, and cry to her
that she has served her term, that her penalty is paid,
that she has received from the Lord’s hand double for all her sins.” (Isaiah 40:1)

“Comfort” calls to mind, also, an old Fanny Crosby gospel hymn – one I haven’t thought of for a very long time – “All the Way My Savior Leads Me”:

“All the way my Savior leads me –
What Have I to ask beside?
Can I doubt His tender mercy,
Who through life has been my guide?

Heavenly peace, divinest comfort,
Here by faith in Him to dwell!
For I know whate’er befall me,
Jesus doeth all things well.”

This is the sort of comfort that goes far beyond simply saying “There, there” to a crying child. “Heavenly peace, divinest comfort” gives people of faith the strength to go on.

March 15, 2008 - The Bucket List

Yesterday, Claire and I went to see the film, The Bucket List, at our local second-run movie theater. We don't get out to many movies in theaters, and this is one we'd meant to see on its first time around, but missed. We're glad the Beach Cinema in Bradley Beach gave us a second chance.

In case you haven't seen it or read about it, the film is about billionaire executive Edward Cole (Jack Nicholson) and blue-collar mechanic Carter Chambers (Morgan Freeman). These two men are sharing a hospital room on a cancer ward when they both learn they have fewer than six months to live. They decide to stop behaving as though they are already dead. Bankrolled by Edward's substantial fortune, they check out of the hospital and live their lives to the fullest in the short time they have left. Living life to the fullest, for Edward, involves field trips like skydiving, visiting the Pyramids and getting a tattoo – macho activities that set the ol' adrenaline a-pumping. Carter's ideas are more modest and more values-driven – "witness something truly majestic," "help a complete stranger" – although he enthusiastically joins in on the race-car driving and touring the world on a private jet. All these are detailed on a scrap of paper from a yellow legal pad they call the "bucket list": the things they want to do before they kick the bucket, which they then scratch off the list, one by one.

It's a buddy movie for the cancer set. In any other circumstances, these two men would have been unlikely to become friends, due to differences in background, wealth, temperament and religious beliefs. Yet, they do become friends. The thing they have in common is cancer, and an awareness that their days are numbered.

The film's plot has been savaged by some critics for being contrived, but the fans evidently loved it. It was the number-one film in theaters for a time. Surely, a large part of its appeal is the chemistry between these two accomplished actors, but I think it also has to do with the way the film fearlessly takes on big, philosophical questions like the meaning of life, death and religious faith. The Bucket List doesn't supply a lot of answers, but the journey is a fine ride.

I was especially impressed by the role religious faith plays in the film. Edward, the over-the-hill hedonist, is a frank and rather prickly agnostic, declaring that the sum total of his belief is "We live, we die and the wheels on the bus go round and round." Carter gently declares his faith in God, although he admits it's not based on empirical evidence. That's what faith is all about, he tells his new friend. To him, faith is clearly not a truth distilled from empirical analysis. It's not something you deduce. It's something you do.

Does Edward get the message? The film hints that he does, leading him to a sort of personal redemption, through repairing some long-sundered family relationships (I won't say more than that, so as not to be a plot-spoiler).

I've never been as sick as the two men in the film, but the scenes of them learning of their cancer diagnosis did strike a chord. News like that sure does pick you up, turn you around and put you back down in a different place.

Everyone should see this film. It's a gem.

January 20, 2008 - The Song Goes On

During the worship service this morning, I pick up the hymnal that’s been set out for me on my chair, and I realize it’s got a name gold-stamped onto the front cover. It’s not my name. The name belongs to Carol, a former member of our church’s Chancel Choir, who died several years ago.

There aren’t too many personalized hymnals in our church, but the Chancel Choir does have a nice tradition of offering one to choir members who are celebrating significant anniversaries of singing with the choir. In Carol’s case, she qualified for that award a very long time ago, indeed: at the time she died, she had been a choir member for more than 50 years. I believe someone asked her sister, Ginny, if she’d like to have Carol’s personalized hymnal as a keepsake, and she declined – so, it made its way into the general supply of hymnals that we use in the sanctuary. From there, it made its way somehow onto the pulpit platform, and ultimately to my chair.

As I sing the first hymn, I find myself thinking about Carol. How many Sundays, I wonder, did she hold this hymnal? Now, it’s found its way into my hands. In a certain sense, I’m carrying on her song today.

That’s the way it always is with worship. Week after week the congregation gathers, but each Sunday it’s a slightly different group. As we lift our voices in song, a first-time visitor may be sharing a hymnal with someone who’s been a regular worshiper for dozens of years. When church members die, and – in the old euphemism – “join the choir celestial,” they’re no longer a part of our community here. But, we remember them fondly, and like to think of them as joining their voices with that company of which the book of Revelation speaks:

“Then I looked, and I heard the voice of many angels surrounding the throne and the living creatures and the elders; they numbered myriads of myriads and thousands of thousands, singing with full voice, ‘Worthy is the Lamb that was slaughtered to receive power and wealth and wisdom and might and honor and glory and blessing!’ Then I heard every creature in heaven and on earth and under the earth and in the sea, and all that is in them, singing, ‘To the one seated on the throne and to the Lamb be blessing and honor and glory and might forever and ever!’” (Revelation 5:11-13)

Ever since I unwillingly accepted the label of “cancer survivor,” I’ve become acquainted with certain other survivors who, well, didn’t survive. I remember them, though: their courage, their perseverance, their grit, their humor. One of the things you have to get used to, in cancerworld, is that there are a certain number of goodbyes. They go with the territory.

There are people I’ve become acquainted with through their cancer blogs, who are no longer with us. Some of these blogs I’ve monitored on nearly a daily basis, but then there comes a day when the entries abruptly stop. Usually, a family member posts a kind message, thanking all those who have followed the loved one’s progress, but informing them that the journey is ended. I’ve felt some sadness on such occasions – even though my acquaintance with the blogger was limited to cyberspace exchanges of mutual support.

Claire just learned, the other day, of the death of a man who had been part of our little band of cancer survivors who addressed the Genentech national sales meeting in Las Vegas a year ago (see my January 27, 2007 blog entry). I remember feeling impressed at this man’s positive attitude, despite the heavy odds he was facing (odds that were greater than mine, since he had a relatively rare cancer, and had already undergone a number of different rounds of treatment). He spoke to Claire and me about his church community that meant a great deal to him, and also about the joy he’d found in his relatively new marriage. The man was fairly bursting with life. Yet, now, death has claimed him.

Do such vibrant voices simply die away, like a forlorn echo? Or do they go on, in the providence of God?

As I look down at Carol's name, gold-stamped onto the hymnal's cover, I feel certain that they do. I can muster no evidence that would convince a determined skeptic. Yet, I feel that I know it to be true. "Blessed assurance," as they say.

We come round to the final verse:

"For Thy church that evermore
Lifteth holy hands above,
Offering up on every shore
Her pure sacrifice of love,
Lord of all, to Thee we raise
This our hymn of grateful praise."