Thursday, July 12, 2012

July 12, 2012 - More of Us All the Time

There are more of us cancer survivors all the time.

According to a June 14, 2012 Reuters news story (“Number of US cancer survivors to increase by a third by 2022"):

“The number of Americans living with cancer will increase by nearly a third to almost 18 million by 2022, according to a report released on Thursday by the American Cancer Society and the National Cancer Institute.



Researchers found that even though the incidence rates of cancer are decreasing, the number of cancer survivors is on the rise due to a growing - and aging - U.S. population. The incidence of cancer rises dramatically with age.

The report concluded that the expanding population of cancer survivors makes it increasingly important that the medical community understand their unique healthcare needs.”


While these statistics may sound at first like bad news, they’re actually not.  Two very positive factors influence these numbers.

First, those of us who do have cancer are surviving longer, thanks to ever-more-effective treatments.  The interval between diagnosis and death is growing greater all the time.  For some of us, even though we’ve been diagnosed with cancer, we’re not dying from it, but from other causes.

Second, people are living longer in general.  Because the chances of contracting cancer go up with each year of our lives, that means there are people being diagnosed with cancer today who, in earlier generations, would never have reached that point, because they would have been carried off by some other ailment that’s more likely to be curable today.

Many cancers are a sort of genetic time bomb.  Certain genes are programmed to go haywire when a person hits a certain age.  If more of us are living to that age (whatever it may be) than in earlier generations, that translates into more cancers.

The emphasis in all these statistics is on the word “living.”  More and more of us are living with cancer, not dying from it.


That means survivor issues are going to loom larger in importance for the medical community.  The combination of more-survivable cancers and longer lifespans in general means a great many of us are journeying through uncharted territory.  Never before have there been so many of us asking what it means to be a cancer survivor.  Never before have there been more of us living with cancer.


We’re living. We’re surviving. We’re people with cancer. Hear us roar!


Wednesday, July 11, 2012

July 11, 2012 – Would You Want to Know?

An article in the July 9 New York Times (Gina Kolata, “A Life-Death Predictor Adds to a Cancer’s Strain”) lays out a grim but philosophically-fascinating scenario.

Imagine you have advanced cancer of the eye. If the tumor has grown large, you’ll very likely lose the eye, which is bad enough – but that’s not all.  A new option for genetic testing of your tumor reveals, with a very high degree of accuracy, which of two subtypes of ocular melanoma you have. Half of all patients have the first type, and are likely to recover completely. Those unfortunate ones who fall into the other half face a 70-80% likelihood they’ll be dead in five years, from metastases to the liver.  This second type of eye cancer is incurable.

According to the Times article, there’s some debate in the medical community over whether doctors ought to offer this testing option at all.  Most patients, it seems, have said they would rather not know if they have an incurable disease. And for those who do, learning of the incurable nature of their disorder – so soon after the initial diagnosis – could very well send them into an emotional tailspin from which they may never recover.

“Why would you want that information when we don’t have anything we can do for you?” one oncologist asked. “That is the fundamental question that has caused people to pause.”

It’s not that the test is medically useless. Some doctors point out that, if they can discover the cancer as soon as it jumps to the liver, they may be able to control its spread for a while. Even after it moves on to the lungs or bones, there are further treatments that can slow its inevitable progress, buying even more time and sparing the patient some pain that would come with a faster-moving cancer.

“Would you want a horrible death that is relatively short,” one doctor asks, “or a death that is slower?”

Of course, those who agree to the test and find out they have the curable variety are much relieved, and rejoice at the good news.

I think I'd want to know.  I’d want to have as much time as possible to scratch a few more items off my bucket list.

So, what do you think?  Would you want to know?

Tuesday, July 10, 2012

July 10, 2012 - MyCancerCircle.com

There are a great number of helpful websites offering support for those dealing with cancer and their families, but one of the most helpful I've seen is a new site, My Cancer Circle. Cancer patients and/or their caregivers can arrange for a complimentary web page, which gives them a central place from which to disseminate news, coordinate support (such as meals delivery) from family members and friends, etc. It's got calendars, blogging tools and other features to provide a central place for getting the word out and coordinating the efforts of various folks who are trying to help.

It looks to me like the marriage of a project-planning team's intranet site and a cancer blog.  Great concept.

If you set up a circle, it's private. Members have to be invited in order to get a login and password.

I've seen other sites that attempt to do something like this, but this one looks like the most full-featured I've seen so far.

Check it out!

Wednesday, July 04, 2012

July 4, 2012 – Preaching from a Wheelchair


I’m spending the Fourth of July in Pittsburgh, at the Presbyterian Church (U.S.A.)’s 220th  General Assembly, which is meeting all week. Presiding over the General Assembly is an elected Moderator, an officeholder who’s sometimes an ordained minister (a position we sometimes call “teaching elder”) or a lay leader (a “ruling elder”).  For the past couple of years, Cynthia Bolbach, a ruling elder from Washington, D.C., has been our Moderator.  On Saturday, as planned, she passed the Moderator’s cross and stole to the Rev. Neal Presa, whom this Assembly had just elected as her successor.

Cindy has served the church during a difficult time.  At the 2010 General Assembly, the church opened the door just a crack, removing a constitutional provision that barred those in committed same-sex relationships from ordination as deacons, ruling elders or teaching elders. Now it’s up to the ordaining bodies – presbyteries in the case of ministers, or local-church sessions, in the case of ministers – to decide who’s suitable to serve.

Because it’s the Moderator’s job when the Assembly’s not in session – which is most of the time – to travel around the country, even the world, promoting and interpreting what the church is doing, Cindy’s had to deal with more than the usual number of angry Presbyterians who just don’t understand why the national church would allow such a thing.

By all accounts, she’s done a marvelous job. As with no other issue, the question of the ordination of gays and lesbians  brings out the worst in some people. Again and again, Cindy has walked into confrontational situations and faced anger, in some cases even outright meanness, with patience and grace.

She’s not walking much any longer. During her moderatorial tenure, Cindy was diagnosed with cancer.  She’s not shared the particular type of cancer she has, nor her prognosis – preferrring to keep that information private – but she did let it be known that her swan song here in Pittsburgh is taking place during a round of chemotherapy treatments.

Cindy preached, and presided over the opening session of the Assembly, from a wheelchair. This is something she chose to do.  She had a very able Vice-Moderator, the Rev. Landon Whitsitt, who could certainly have carried on in her absence, but it was obviously important to her to finish the job herself.  On both days when she was in front of the Assembly, Cindy seemed low on energy, but she fulfilled her role with grace and good humor.

Cindy simply did what people with cancer most want to do.  She kept on living.

I don’t think she’ll be much in evidence during the rest of the Assembly.  Having passed the mantle to her successor, she may have gone back home to continue her treatments, for all I know. Or, she may be simply taking it easy, conserving her energy for the things she most wants to do.

Whatever the case, whether here in Pittsburgh or back home in Washington, Cindy is surrounded by the prayers of a grateful church.  We admire her strength, perseverance and faith.

Sunday, July 01, 2012

July 1, 2012 - A Tale from the Insurance Wars

Just thought I'd pass along this little item someone sent me on Facebook, which speaks for itself:

"This is my duaghter JoJo. United Health Care dropped her from my group plan in 2009 and gave us no reason. That same year the CEO of UHC-Group made $770,000,000. It would take the average family physician 4,400 years to make the same amount.


Part 1 of "Obama Care" in 2010 saved my daughter's life. It made it illegal for insurance companies to drop people for no reason. She got the brain surgery she needed. United Health Care was ultimately fined $10,000,000....


Yes we can..."

I don't know anything about that CEO who accepted such obscenely large compensation, nor how he sleeps at night. If you met him on a golf course, he'd probably be a likable person. Somehow he must manage to compartmentalize this stuff in his mind, so he doesn't have to face the twisted, self-serving ethics that are deeply embedded in his company's corporate culture.

It's not just an isolated case of corporate wrongdoing. The UHC-Group compensation case may have been the most egregious example of runaway executive compensation in the healthcare industry, but there are plenty more stories like it.  It's a systemic issue. And it's the system that needs to be fixed.

As the people of our nation rally the political will to do that, personal stories like this one help.

Monday, June 25, 2012

June 25, 2012 – Tweaking the Cocktail

If ever there were a good time to be a lymphoma patient (not that I think there ever is), it’s now.  Every annual meeting of ASCO (the American Society of Clinical Oncologists) seems to offer news of some new variation on treatment protocols that promises a heightened survival rate.

The latest one for follicular lymphoma – as I learn today from an e-mail bulletin sent around by the Leukemia and Lymphoma Society – is a new combination of Rituxan (the monoclonal antibody drug I received along with my CHOP chemotherapy) and an old drug that’s been around for a while, Revlimid:

“John Leonard, M.D., of Weill Medical College of Cornell University presented promising results for a Phase III trial of a new Rituxan combination to treat patients with follicular lymphoma (FL). Dr. Leonard reported that using Revlimid plus Rituxan very much increased overall response rates for relapsed FL patients (73% in this trial vs. 50% for Rituxan only in previous trials). A Phase II trial of this combination for newly diagnosed FL patients is already underway.”

Revlimid, its manufacturers admit on their website, is an “analogue” of Thalidomide – one of the scariest names out there in the field of pharmacology. OK, let’s be real: Revlimid is Thalidomide, but with the drug’s notorious history I can understand why they’d rename it.  I still remember, as a kid, paging through an issue of LIFE magazine with its chilling, black-and-white photos of the children born with horrible birth defects as a result of that drug.  From 1957 to 1961, Thalidomide was commonly given to expectant mothers to prevent morning sickness.  No one knew that many of the children born to these unfortunate mothers would have no arms – other than small, vestigial appendages that could in no way substitute for the real thing. Very sad.  (Not to mention, a gold mine for the trial lawyers.)

As a cancer drug, Revlimid is evidently effective: and, as long as the patient isn’t an expectant mother, it’s supposed to be safe (or, at least, as safe as most other cancer drugs, all of which have a certain risk to them).  Lots of chemo drugs come with a warning label saying they’re not for expectant mothers, or may cause sterility.  Doctors have raised that sort of warning with me, at various times as I prepared for treatment, but when I tell them Claire and I are not only done having children, but that I’ve had a vasectomy, it lays those concerns to rest pretty quickly.

It’s not cheap, though: Wikipedia.com reports that Revlimid (medical name, Lenalidomide) costs an average of $163,381 per year.  Ouch.

Dr. Leonard’s work is only a Phase I trial, with Phase II now underway, so this drug cocktail is a long way from being ready for prime time.  I’m glad to know someone’s out there, though, with the medical-research equivalent of a cocktail shaker, trying out new drug combinations.  From early indications, chances are that this one may be in production in several years’ time, so it's one more reason to be hopeful, should the day come when I need treatment again.

Saturday, June 23, 2012

June 20, 2012 – Looking for Burglars in an Empty House

Today I drive to Memorial Sloan-Kettering’s satellite facility in Basking Ridge for a follow-up visit with Dr. Boyle, my thyroid surgeon.

The worst part of the trip, it turns out, is the drive up there.  I-287, a ring-road around New York City, is one of the most congested highways in the country.  Today, it’s a parking lot.  Given the time of day, there has to have been an accident or breakdown or something, but I don’t stick around to find out. Already running late, I bail out at the nearest exit (once I creep up to it), and use my GPS to chart out an alternate route on back roads.

I’m an hour late when I get to the place, but they manage to adapt.  First is a thyroid ultrasound – one of the easiest medical tests ever, from the patient’s standpoint.  Lie down on your back on a gurney, in a darkened room, while the technician squirts pre-warmed goo on your neck (that’s a technical medical term, I believe) then slides a sensing device all over your neck for five minutes or so.

It occurs to me, as I’m lying there looking up at the ceiling, that this follow-up test is something like looking for burglars in an empty house.  I no longer have a thyroid gland, and Dr. Boyle was confident, following the surgery, that he’d removed the entire thing, leaving no thyroid tissue behind.  I had the radioactive iodine treatment last fall, just in case.  Today’s visit is likewise one of those “just in case” situations.

The visit with the doctor himself is brief and uneventful. After ascertaining that I’m having no difficulties, and that I’m continuing to see his colleague Dr. Fish, the endocrinologist, to make sure I’m taking the most appropriate daily dose of Synthroid (the replacement thyroid hormone), he tells me I’m doing fine and that he’d like to see me in a year.

That’s encouraging.  I wonder about the necessity of today’s test and consultation, but I suppose it fits into some kind of standard follow-up protocol.

I didn’t think we’d turn up any burglars.  What would they be looking to steal, anyway, after the scorched-earth policy of my thyroidectomy?

Tuesday, June 12, 2012

June 12, 2012 – Huh?


Every once in a while you run across a news story, and the only possible reaction to it is.... “Huh?”

That’s how I responded when I read a news article just out, that claims there’s conclusive evidence that overweight men have a better chance of surviving diffuse large B-cell lymphoma than those of more normal weight.

Like I said: Huh?

That news runs counter to every bit of medical advice I’ve been hearing for most of my life.

The article is of particular interest to me because (1) I’m a man, (2) I’m considerably overweight, and was so at the time of my lymphoma diagnosis, and (3) I have something very similar to diffuse large B-cell lymphoma.

OK, my grading was actually “B-cell, diffuse mixed large and small cell.”  That means I had some less-dangerous small cells – the kind present in indolent, “follicular” lymphoma – mixed in with the large ones.  It was the presence of the aggressive larger cells, as discovered by the second-opinion pathologists at Memorial Sloan-Kettering as they reviewed my biopsy slides, that put me on the chemotherapy bandwagon straightaway (do not pass GO, do not collect $200).  Otherwise, watchful waiting would have been a viable option.

The only time in my life when I’ve been of statistically normal weight was a period of time in my very late teens and early-to-mid-20s.  Both before and after that time, I’ve struggled constantly with my weight.  My failure to turn around my tendency towards obesity has been one of the greatest sources of guilt and shame in my life.

Ever since cancer has come onto the scene, it’s been even worse.  It’s hard to marshal the emotional energy to change my eating patterns when I’ve been through the sort of struggle I have.  There’s a part of me that says to the rest of me: “Why should you suffer through a diet when you’ve already suffered through so much else?  Live a little!”

Then this article comes along, suggesting that the spare tire I’ve been carrying could very possibly have been my life-preserver.  Go figure.

The article’s appropriately cautious about the study’s results.  The researchers don’t want anyone to go out and start lobbying for hot-fudge sundaes to be included in the treatment protocols.  Quite sensibly, it makes the point that obesity is a proven risk factor for all manner of very bad things that could happen to a person, medically, and that there’s every reason to lose those extra pounds.

But still, it makes you think.

And this one I’ll be thinking about for a very long time.

Monday, June 11, 2012

June 11, 2012 – Robin Roberts, Survivor


A remarkable television moment this morning, as ABC Good Morning America broadcaster Robin Roberts delivers an emotional announcement that she has myelodysplastic syndrome (MDS), and is starting treatment that will ultimately result in a bone-marrow transplant.

This isn’t the first time Robin has been in the news with a very personal medical story.  Five years ago, she received successful treatment for breast cancer, and spoke about it on the air. Today, she sat on a couch with other members of the Good Morning America team gathered around her for support, and told her viewing public of her diagnosis.  A helpful stagehand had attached a box of Kleenex to the couch with velcro.  She didn't need it.

It’s really worth watching the video clip of Robin’s Good Morning America announcement.  It’s a fascinating mini-case-study of what it means to live with cancer, in community with others. The reactions of her colleagues sitting on either side of her are just as illuminating to watch as she herself is.



Although Robin didn’t use the “C” word on the air, MDS is considered to be a blood cancer in the same family as leukemia and lymphoma.  Treatments are similar.  Robin has the good fortune to have a sister who’s a perfect donor match (which tells me she’s going to have an allogeneic stem cell transplant, generally considered to be the most effective).  Good for her.

At such future time as I may have to have a stem cell transplant, a donor’s not going to be so easy to find.  Both my brothers have been tested, and we’ve learned that neither one of them fits into the 25% of siblings who are typically a good match, so I’d have to rely on finding a volunteer through the National Bone Marrow Donor Registry.

Robin is planning to continue working, even though a PIC line may be visible on her arm (not a big deal for most people, but in the image-conscious world of TV journalism, it’s significant). She will, of course, eventually be out on sick leave for an extended period of time, as she goes into isolation for the actual transplant.  Yet, in the months leading up to that time, as she receives various drugs to prepare her for the big event, she’s going to keep going before the cameras, living life as usual.

While this may sound extraordinarily courageous to some viewers – and, indeed, to some of Robin’s colleagues sharing the couch with her – to anyone who’s been in that situation it’s not so surprising. What most of us want to do, once we’ve gotten over the initial shock of our diagnosis, is to keep on living our lives.  This is the second time around for Robin, when it comes to cancer treatment. While she’s obviously emotional going before the cameras to tell her story, it makes sense to me that she wants to keep on keeping on, with a minimum of fuss.  In Robin’s own words, “It’s about focusing on the fight, and not the fright.”

If her viewers catch sight of a bandage on her arm, indicating the presence of her PIC line, then it will be a helpful reminder that there are far more people living with cancer than dying from it.

Tuesday, June 05, 2012

June 4, 2012 – The High Cost of Dying


An article in the June 4 & 11 issue of Newsweek lays it on the line, as far as the high cost of medical treatment in this country is concerned.  Case in point: Terence Foley, who died in December of 2007 after years of treatment for a rare kidney cancer. His wife, Amanda Bennett, tells their story in an article excerpted from her new book, The Cost of Hope: A Memoir (Random House, 2012).

Simply as an exercise in accounting, the figures for Amanda’s husband’s final month or so of treatment are jaw-dropping: $33,382 for one hospital stay, $43,711 for the next, and $14,022 for his final three days of life.

Amanda doesn’t begrudge the more than 90 grand her family and their medical insurer laid out in order to buy her husband a few more weeks, even though his quality of life was poor. She says she would have given approval for even more spending, had someone convinced her it would bring any real hope of achieving a remission or cure.

But that’s the root of the problem.  The higher you climb up the pyramid of the medical-treatment establishment and into the rarefied air of physician egos - not to mention the threat of legal liability - the more reluctant many specialists are to admit that any of their patients are likely to die on their watch.  They find it easier to simply order another MRI and hope it reveals something different than the last one did.

In a related video on the Newsweek/Daily Beast website, Amanda passes on a bit of practical wisdom one of her husband’s doctors shared with her, in a rare moment of candor: “We’ve got a terrific medical establishment. We do great things.  But we’ve never made anybody immortal.”



Several years after Terence’s death, Amanda gathered up her late husband’s medical records as she began researching her book.  As she commenced reading, she became aware of something no one had noticed at the time.  Everyone on Terence’s medical team knew his chances of survival were slim, and getting slimmer.  Yet, no one had been perceptive – nay, courageous – enough to blow the whistle and say, “Wait a minute, I think some of this may be getting excessive.”

In Amanda’s words: “I didn’t realize that they had prodded and X-rayed and scanned and tested him even though they thought he was dying.  Soon.  The discharge record after his four-day stay expresses regret that they could offer no more than ‘comfort care.’”

But still, during those days the tests and procedures just kept coming.

It’s true, we’ve got an amazing medical system in this country – especially in teaching hospitals like the University of Pennsylvania Medical Center, where Terence received his care.  I feel the same way about Memorial Sloan-Kettering, and even – for more routine needs – about our excellent community hospital, Ocean Medical Center. The problem is, in whatever hospital, once a crowd of specialists starts milling around a patient, each putting shoulder to the wheel of the aggressive-treatment juggernaut, it’s very difficult to stop it, nor even to slow its progress enough to assess whether every possible treatment is a good idea.

Amanda found that, in a major medical center like UPenn, it can be hard to simply keep track of all the people who are making medical decisions: “Over the stay, at least 29 professionals – nurses, physical therapists, a nutritionist, and nine M.D.s – attended to his needs.  We had never met any of them before, and I don’t recall meeting the majority of them even then.”

Typically, the specialists deal with only one tiny segment of the patient’s medical issues, reserving judgment on other problems that belong to a colleague’s turf.  OK, maybe a cardiologist wants to order a CT scan to take another look at how the heart’s doing – but is that costly scan really better than less-expensive diagnostic methods, if the patient’s kidneys are about to shut down for good?  Amanda began to suspect she was “the only person seeing Terence as a whole person instead of just a single piece of his body that needed attention.”

Moreover, Amanda found that most doctors have only the sketchiest awareness of how much certain tests and procedures are going to cost.  Medical insurance in America has evolved into such byzantine complexity that another sort of specialist – an insurance expert – is required to run the numbers.  This rarely happens until after the treatment has been ordered and completed. The consequence?  It’s all but impossible for patients and their families to make intelligent decisions, in real time, based on what certain treatments are going to cost.  Heck, the doctors themselves don’t even know.

It’s no wonder they don’t, because every insurance company is allowed to function like a vacationer shopping for a weekend hotel deal on Priceline.  Each company’s got their own William Shatner “Negotiator” character, whose job is to intimidate doctors and hospitals into allowing the insurance company’s executives to name their own price.  The result?  In going over her late husband’s medical records, Amanda and her researcher found that “the same CT scan, in the same hospital, cost $776 or $2,586, depending on which insurance company was paying.”

Is this free enterprise?  Sounds more like piracy to me.  (Although, in fairness, maybe that’s too strong a term.  “Privateers” is more like it.  Students of naval history know the privateers functioned more or less like pirates, except for the fact that their captains carried government-issued Letters of Marque allowing them to “name their own price” for captured enemy shipping.  Arrrgh, mateys, haul down the Jolly Roger and raise the comely pennant o’ Blue Cross/Blue Shield!)

In the overcrowded insurance marketplace, our medical-billing machinery has achieved such a level of complexity that it’s become a major cost center in and of itself.  Amanda cites a figure of 31% for the average cost of paperwork, much of it related to billing.  That’s nearly one-third of every healthcare dollar.  Granted, some paperwork will always be necessary, but even so, a shockingly high portion of every health-care dollar is devoted to paying for the insurance companies’ overhead, just so we can fool ourselves into thinking we’re maintaining free enterprise in an open marketplace.

Does preserving competition in the world of medical insurance result in such massive savings that they offset this absurdly-inflated cost of paperwork?  Not a chance.  But few people ever think about that.  We’re paying to solve one problem, only to create another that’s costing us even more.

I know from personal experience (based on the years we lived in Britain) that a single-payer system like Britain’s National Health System doesn’t have that problem.  That’s because there’s no patient billing, no multiple mailings, no collections. The government gets the bill, not the patient.  Think of it: No patient billing. Just imagine how much that would save us in paperwork!

But, no, we couldn’t do that.  Not here in America.  That would be – cover your tender ears, now, children, because I’m about to utter an ugly word –  “socialism.”

(Of course, everyone in America who's older than their mid-sixties already benefits from a government-funded medical-insurance system – Medicare.  I suppose it must stop being socialism, though, once the recipient passes the golden age of Medicare eligibility.)

Amanda points out that, in the last Presidential election, Sarah Palin stirred up a tempest of outrage with her dire warnings about “death panels” – which were, in fact, merely Medicare’s proposal that the confusing, ever-shifting constellation of medical professionals treating seriously-ill patients sit down and talk with each other every once in a while.  Amanda has a very different take on it: “The scary phrase suggested a harsh group of executioners ready to pull the plug on Granny to save money. I began to think of it in a different way: wouldn’t it have been great, as death became inevitable, to have had some help figuring this all out?”

She ends her article by observing that the cumulative, seven-year bill for her husband’s care was a whopping $618,646.  While she admits she honestly doesn’t know – had they realized the true cost – how much of his treatment they would have declined, she does know this about the kind of person her husband was: “I believe he would have liked the chance to play a more active role in how we spent enough money to vaccinate 600,000 children in the developing world.”

Were I in his place, I think I would, too.

Sunday, May 27, 2012

May 27, 2012 – Back from Bermuda



Claire and I have now returned from the Kick Cancer Overboard cruise to Bermuda.  Many thanks to those who contributed to the organization so we could have this opportunity!

Kick Cancer Overboard is a plucky little non-profit that’s taken on a rather unusual mission: giving away free cruises to people who have been affected by cancer.

Lest this sound to you like a frivolous mission, consider this.  When people have been through a struggle with cancer, either as patients or caregivers, often the last thing on their priority list is their own recreation and relaxation.  Cancer very often drains its victims of energy, enthusiasm, and – especially in this dysfunctional healthcare-funding system – of financial resources. Who can afford a vacation, under such circumstances?

Yet, often, a vacation is just what the doctor ordered (or would have, had he or she known about Kick Cancer Overboard).

You can view a video about Kick Cancer Overboard here.

(Passing under the Verrazano Narrows Bridge, outbound.)

On the cruise, Claire and I met a young couple, just married a few days before, after she had completed surgery and chemo for breast cancer.  Their wedding was a hurried affair at City Hall – rather than the church wedding they’d planned – so she could receive much-needed healthcare benefits from his employer.  This cruise was their honeymoon: the only one they could afford, I’m sure.

We had a lengthy conversation with a woman and her twentysomething niece, both of them grieving the recent loss of their sister and mother to a rare brain cancer.  The niece, daughter of the woman who’d died, felt exhausted and drained from having been her mother’s caregiver during her final illness.  The cruise was a Godsend to them both, and a way for them to reconnect with each other after their painful experience of loss.

There were whole families on the cruise, accompanied by their young, cancer-survivor children, some of the kids still showing the hair loss and facial swelling that come from chemotherapy.

Claire and I volunteered to conduct a brief, Sunday-morning worship service in the stunning chapel on our ship, Royal Caribbean’s Explorer of the Seas.  I was pleasantly surprised by how many of the group attended, even though it was 8:30 in the morning on the first full day of the cruise.

I read the story of Jesus’ healing of the paralytic from Luke 5:17-26 – the one where the man’s friends cut a hole in the roof to lower him down to receive help from Jesus.  I spoke of how important it is to assemble a posse when we’re facing something like cancer, for these people will do whatever needs to be done so we can get the help we need.

I also spoke of how Jesus’ instruction to the man is “Take up your bed and walk.” We need to assume the role of partners in our own healing.

All in all, I was impressed by the folks behind Kick Cancer Overboard – who for this year’s cruise  managed to donate themselves, or raise corporate and service-club contributions for, something like 45 all-expense-paid trips.  Their goal, they say, is to fill an entire cruise ship!

Given their energy and commitment, I think they just may get there eventually.



Thursday, May 03, 2012

May 3, 2012 – Cancer Changes Everything...and Nothing


Saw a perceptive blog posting today on the New York Times website by Suleika Jaouad, a young woman who’s undergoing a bone-marrow transplant for leukemia.

She makes the usual observation – something I remember well, after going public with my diagnosis – that she’s experienced a whole range of reactions from people.  Some seem able to process the news, others get flustered.  Some friends are right there for you, others go AWOL, at least for a while.

Cancer’s a big, big subject, and it calls forth a range of emotions.  Suleika admits being surprised and troubled by this at first, but then when she got a little distance on the situation, she became more philosophical:

“But in the year since my diagnosis, my feelings of hurt have given way to understanding. How can I expect anyone to produce the perfect, reflexive response to such sudden and unpleasant news? Cancer can catch even the best of us off guard. Sometimes the emotions come pouring out. Sometimes they stay locked inside. I've realized that it's nearly impossible to summon the ‘right’ words while simultaneously processing the news that someone you love has a life-threatening illness. I find myself counseling my friends and family that there is no perfect thing to say – but that they just have to say something.”

I’d want to add, “Sometimes you don’t need to say anything at all, just be there.” But I think that’s what she means.

What is it that makes us yearn for a script to bring to our most significant human interactions?  We seek the perfect words, whatever that means. Sure, words are important, but in the last analysis, it’s seldom the words our friends and family say that’s important.  It’s who they are, and how their loving presence intersects with ours.

Cancer changes a lot about our lives, but that’s something that doesn’t change.

Wednesday, May 02, 2012

May 2, 2012 - Are You Running for Me?


A few months ago, our friend Thelma – also a cancer survivor – told me of a local organization called Kick Cancer Overboard, that has an unusual mission: offering free cruises to cancer survivors and their families.  Thelma told us she’s going on one of those cruises, in this case to Bermuda.  About a hundred other survivors and family members would be joining her.  What’s more, she wanted to recommend my name as well.

“OK, why not?” I said to her, not thinking it would amount to anything.

Well, come to find out, Kick Cancer Overboard is offering a place on the same cruise to Claire and me.

Not only that, a friend of Thelma’s by the name of Ginny is running in a half-marathon this weekend, and is doing so to raise money for Kick Cancer Overboard in my name.

Our cruise tickets are already paid-for by other donors, so – strictly speaking – Ginny’s not raising money so we can go. It is true, though, that the money she raises will replenish the organization’s coffers, allowing others to take advantage of the organization’s kindness in the future.

Ginny’s set a goal of $2,000 in pledges.  Already, Thelma tells me, $600 in gifts have come in.  Never before have I asked readers of this blog to make any financial contribution, but in this case I’d like to extend the opportunity to honor Ginny’s efforts this Saturday and support Kick Cancer Overboard.  If you like what I’ve written here over the years, it would warm my heart if you’d be willing to make a gift – small or large, it doesn’t matter – to allow other survivors to get a little respite from what they’re going through.

There’s a special web page devoted to Ginny’s efforts, where you can make your gift.

I realize that, in the great constellation of efforts out there to support and heal those with cancer, giving away cruises may seem trivial and even a little wacky.  Yet, having been through the cancer experience twice now – first lymphoma, then thyroid cancer – I know very well how unrelenting this all can be.  Taking a little break, a little sabbath, in the midst of it all, can be therapeutic in itself.

I’d love to see Ginny reach her goal, and am honored she’s doing it in my name, a person she’s never met.

At the end of the day, there’s still a lot of kindness in this world.  Why not perform a random act of kindness and make a contribution to extend some kindness to another cancer survivor, who can enjoy this sort of break in the future?

Thanks for even considering it!

Friday, April 06, 2012

April 6, 2012 - Godforsaken


Today’s Good Friday, and it fell to me to give the sermon at our local Community Good Friday service, sponsored by churches of the Point Pleasant/Bay Head area.

I’ve preached many a Good Friday sermon in my time, but today I was struck by the words of Jesus from the cross, “My God, my God, why have you forsaken me?”  Jesus is of course quoting Psalm 22:1, one of the gutsiest laments in the Hebrew scriptures.

Many Christians find it hard to stomach this awful scene depicting the Son of God in abject despair.  Some of them deal with their discomfort by staying away from Good Friday services altogether (or, at least, from worship services like ours that strive to regard the hard reality of the crucifixion without blinking). If relentlessly practicing positive thinking is your thing, and if – like some of my Baptist friends – you just can’t hold back from cheerily uttering that Pollyanna proclamation, “It’s Friday, but Sunday’s coming!”, you’re probably numbered among this group.

Other than boycotting Good Friday, the other way to manage such cognitive dissonance is to imagine Jesus wasn’t really so Godforsaken as all that.  Following the lead of the Gospel-writer John – who, unlike Matthew, Mark and Luke, is more inclined to portray Jesus as omniscient, and eerily aloof from even his own sufferings – they seek to to rationalize away his sense of abandonment.

That view of Jesus is actually heretical, as the church has traditionally viewed it.  The traditional doctrine of the Incarnation declares that, during the 33 years of his earthly life, Jesus was truly God and truly human. In a reversal of the state of affairs that’s prevailed through much of history, Christians in our highly-churched American culture are more likely to struggle to accept Jesus’ humanity than his divinity.

In the Garden of Gethsemane, as he wrestled with the decision he had made, he could only turn to God in prayer – just like any of us.  He could only ask God to “take this cup away from me.”  He didn’t say, “What do you think, God, hasn’t this show gone on long enough – isn’t it time, now, for me to overturn this cup?”

Throughout his earthly life, Jesus suffered and struggled, feared and doubted, bled and died – much like any of us.  The scriptures teach that he was unlike us in one respect – that he did not sin, and therefore went to the cross blameless – but in every other way he was human.  And that is why he was impelled to cry out: “My God, my God, why have you forsaken me?”

Do you think he didn’t really mean that?  Do you think it was just a line in a play, spoken for our benefit?  Do you think he knew all along that it would come out OK in the end, that this death – that was even then wrapping its cold, bony fingers around his neck and starting to squeeze – was not really death, as we know it from the experience of others (and will one day know it ourselves)?

No.  When Jesus cries out, “My God, my God, why have you forsaken me?” I take him at face value.  I believe he means what he’s saying.   I believe he truly feels Godforsaken.

That’s a colorful word, “Godforsaken.”  It hardly even sounds like an English word at all.  It’s more like one of those intricate, compound German words: schadenfreude or weltanschauung, or even the lowly pepper-cookie, the pfeffernusse.  The German language has that capability of combining shorter words together in a long string.  I’m glad that, in this instance, the English allows us to do so, because no other word captures the sense of abandonment and desolation, the fear and anxiety, the doubt and despair, that’s caught up in that word, “Godforsaken.”

Sometimes we speak of “a Godforsaken place.”  That expression is reserved for the driest of deserts, the most isolated of islands, the most barren of landscapes.  The geography of the human heart it describes is equally desolate.  That’s what Jesus was feeling, there on the cross.  The pain he felt in his body was only the half of it.  The sense of abandonment that tore at his heart was just as agonizing, maybe even more so.

Those of us who have had to cope with that unwanted guest, Cancer, gate-crashing our lives perhaps know something of what this means.  There may have been times when the word “Godforsaken” accurately described the way we felt.

Christian essayist G.K. Chesterton captures the sheer absurdity of God’s son crying out “Why have you forsaken me?” as he observes:

“When the world shook and the sun was wiped out of heaven, it was not at the crucifixion, but at the cry from the cross: the cry which confessed that God was forsaken of God.” [Orthodoxy (Moody, 2009), p. 20.]

We don’t like to think – no, not even imagine – that “God was forsaken of God.”  God’s supposed to stay in heaven, and all is supposed to remain right with the world.  The crucifixion was the one time in the history of the universe when that did not happen, when the fundamental balance of creation was thrown off, when chaos seemed briefly to reign, when the interrelationship of the three persons of the Trinity was severed, when darkness descended in mid-afternoon and the very earth beneath our feet rocked and reeled.

Speaking personally, I still don’t understand why it happened.  Yes, there are many competing theological theories of the Atonement, of why and how Jesus had to suffer and die so sins might be forgiven.  None of them, at the end of the day, answers every question.  I also don’t understand how it happened.  My mind is just too small to take in the mystery of the Incarnation, the complexity of the inner workings of the Trinity, the marvel of divine Grace.

Although I don’t understand why or how the crucifixion happened, I can say I’m awfully glad it did happen.  I’m glad because, when I look on from afar, from the perspective of twenty centuries, at the spectacle of “God forsaken of God,” as Chesterton says, I know that because of what Christ has done, I will never be Godforsaken in quite the same way.  Through every trial and tribulation, through every pain or struggle divine Providence may in the future place in my path, whether my lymphoma creeps back into my life again or whether it doesn’t, I’ll always be able to look to the cross of Jesus and know that I am not alone, that there is one in the heavenly places praying for me who knows what it means to be human.

To me, that’s what’s so good about “Good Friday.”  I would never be so bold as to ask one such as Jesus to go to the cross for me – I do not deserve it – but the good news is that he has done so, anyway, of his own accord.  For that, I am grateful beyond words.

Monday, March 12, 2012

March 12, 2012 – Job’s Comforters


One of the worries people often have when a friend is diagnosed with cancer, or experiences some other misfortune, centers around the question, “What do I say?”

Lots of energy is burned up fruitlessly trying to answer this question.  Even if an answer emerges, it can very easily turn out to be the wrong one.  Stories abound about unintentionally hurtful things well-meaning friends and family members have said to the newly diagnosed.

Yet, that’s no reason to stay away.  Friends need friends more than ever in times of trouble.

Here’s a little poem, “Comforters,” that gets to the heart of this matter.  It was written by a cancer survivor.  I can’t copy it here, because it’s under copyright, but you can easily read it by clicking on this link.

This calls to mind the ancient story of Job, the faithful man of God who’s suddenly afflicted by a perfect storm of suffering, including bad health.  Job receives a delegation of visitors, friends of his who are trying to comfort  him.  Each one presents an answer to the “Why?” question Job’s been asking himself ever since his troubles began.  Yet, each would-be helper fails miserably.

The first friend, Eliphaz the Temanite, comments philosophically on the inscrutable ways of God.  How hard it can be – he explains to his poverty-stricken friend, who has just lost his entire family and whose once-healthy body is covered with painful boils – for us to account for many of the things that happen, both good and bad!  There is no one who is without fault, so therefore it makes sense that no one is spared some measure of suffering in this life.  Besides, it could be that God – who’s noted for extending punishment for one person’s wrongdoings to the generations that follow – is simply collecting on some old debt.  The important thing is to keep returning to God, trusting in the Lord to bring healing and restoration in time:

“For misery does not come from the earth, nor does trouble sprout from the ground; but human beings are born to trouble just as sparks fly upward.   As for me, I would seek God, and to God I would commit my cause.  He does great things and unsearchable, marvelous things without number.... How happy is the one whom God reproves; therefore do not despise the discipline of the Almighty. For he wounds, but he binds up; he strikes, but his hands heal.”
[Job 3:6-9, 17-18]

The second visitor, Bildad the Shuhite, tells Job he’s just sure his afflictions must be his own fault, that he’s sinned against the Almighty in some way.  If he’s diligent about repentance, though, God just may have mercy and take away Job’s afflictions:

“Does God pervert justice? Or does the Almighty pervert the right? If your children sinned against him, he delivered them into the power of their transgression. If you will seek God and make supplication to the Almighty, if you are pure and upright, surely then he will rouse himself for you and restore to you your rightful place.”
[Job 8:3-6]

The third caller is Zophar the Naamathit.  He chides his friend Job for being so certain he’s blameless and undeserving of his terrible fate:

“Can you find out the deep things of God? Can you find out the limit of the Almighty? It is higher than heaven – what can you do? Deeper than Sheol – what can you know? Its measure is longer than the earth, and broader than the sea. If he passes through, and imprisons, and assembles for judgment, who can hinder him?”
[Job 11:7-10]

Yet, Zophar’s counsel is not without kindness.  He, too, urges Job to consider his burden of suffering as God’s correction, and repent:

“If you direct your heart rightly, you will stretch out your hands toward him. If iniquity is in your hand, put it far away, and do not let wickedness reside in your tents. Surely then you will lift up your face without blemish; you will be secure, and will not fear. You will forget your misery; you will remember it as waters that have passed away. And your life will be brighter than the noonday; its darkness will be like the morning. And you will have confidence, because there is hope; you will be protected and take your rest in safety. You will lie down, and no one will make you afraid; many will entreat your favor. But the eyes of the wicked will fail; all way of escape will be lost to them, and their hope is to breathe their last.” 
[13-20]

Commenting on the story of Job in his classic book, When Bad Things Happen to Good People, Rabbi Harold Kushner writes:

“Under the impact of his multiple tragedies, Job was trying desperately to hold on to his self-respect, his sense of himself as a good person. The last thing in the world he needed was to be told that what he was doing was wrong. Whether the criticisms were about the way he was grieving or about what he had done to deserve such a fate, their effect was that of rubbing salt into an open wound.


Job needed sympathy more than he needed advice, even good and correct advice. There would be a time and place for that later. He needed compassion, the sense that others felt this pain with him, more than he needed learned theological explanations about God's ways. He needed psychical comforting, people sharing their strength with him, holding him rather than scolding him.


He needed friends who would permit him to be angry, to cry and to scream, much more than he needed friends who would urge him to be an example of patience and piety to others. He needed people to say, ‘Yes, what happened to you is terrible and makes no sense,’ not people who would say, ‘Cheer up, Job, it's not all that bad.’ And that was where he friends let him down.”

[Harold Kushner, When Bad Things Happen to Good People
(Random House, 2001), pp. 120-121.]

Let us strive not to let one another down as well, when friends come upon hard times.  Just be there.  Listen.  Share the pain.  Offer to fill the water-glass or run some small errand.

You’re not there to fix it.  You’re just there.  And that’s what friends are for.

Friday, March 02, 2012

March 2, 2012 - A 12-Year Old Philosopher

Just a brief post today, to share something remarkable I just saw online.  National Public Radio’s “Morning Edition” show featured a story about a 12-year-old cancer survivor, Grant Coursey.  After multiple surgeries for neuroblastoma, a tumor wrapped around his spinal cord that was impeding his breathing, he’s considered cancer-free.

Grant was very young when he was receiving his treatment, but the experience has evidently made a big impression on him.  I’ve written upstream about how cancer monkeys with the stages of human development, often giving survivors perspectives on life that are more commonly held by much older people.  This certainly seems true of young Grant, as this exchange with his mother, Jennifer, demonstrates:

"I always kind of hoped that you didn't really remember much," Jennifer says, "but the scary stuff really stuck with you."

"Yeah. You know, I've got big scars all over my back from getting cut open," Grant says. "Whenever that kind of starts to twinge a little bit, like if I touch it wrong or something like that, it just kind of reminds me I'm lucky."

"Yeah," Jennifer says.

"You know, life is really good," Grant says. "And there's this saying that says if you've been close to death, you understand life more. And sometimes I think of that, and I think, you know, if this had never happened to me, I never would have understood how much life means, kinda. You know? What if I had died? I'd never have this amazing life."

"That's right," his mother says.

"That's crazy to think about," Grant says.

"It is crazy to think about," Jennifer says. "Well, Grant, I'm sure glad you got well."

"Yeah."

"I sure love you. And I hope you're picking up that I'm so proud of you," Jennifer says. "I'm so proud of you."

"I pick that up a lot, honestly," Grant says.

"Good."


Cancer’s a stern teacher, but an effective one.  Blessings to Grant, and to so many other kids like him who have had this tough but life-changing experience!

Monday, February 13, 2012

February 13, 2012 – Link to My Past


I’ve been recovering at home for the past week, following last Monday’s surgery for benign enlargement of the prostate.  Everything went well, as predicted, and I’m on track for a full recovery.  Tomorrow I’ll venture back over to the church office, and see how things go.

Today, though, I’m thinking about an object that came into my possession recently.  A few days before my surgery, I did a Google search for the name of my father’s old business, a high-end men’s clothing store called Wilton & Woolley.  It was located on Main Street in my hometown of Toms River, New Jersey.  (The “Woolley” name belonged to a silent partner, a haberdasher from another town who had fronted him some money to start the place.)  My father, Carlos E. Wilton, Sr., operated the store for a decade or so in the late 1950s and early 1960s, before getting out of the business in the nick of time, just before Toms River’s once-vibrant Main Street was bled dry by a new shopping mall on what was then the outskirts of town.  Dad used to tell my brother Jim and me that Wilton & Woolley was our family business, that we all owned it together and that one day maybe we kids would have it for our own.

I can’t imagine being a retail merchant, myself – even if an old-fashioned haberdashery like his could have survived to be a going concern today.  Yet, that’s the way my father used to think when we were kids, and who were we to disabuse him of the idea?

I was looking the other day for a photo of the Wilton & Woolley storefront to put on my Facebook timeline, and never did find one.  Google led me, instead, to an eBay page, where somebody was selling an old printer’s block with the Wilton & Woolley name on it.

It was a strange feeling to run across that item.  It felt vaguely wrong to see it there, like it was a piece of my family heritage on the auction block.

In fact, this hunk of wood and metal had never been owned by anyone in my family.  Back before the days of computer graphics, print shops would create metal plates they would insert into a rack beside similar blocks, along with a whole lot of the moveable type that was then their stock in trade.  Then, they would slather ink onto the whole assemblage, and run as many copies of the letterhead, handbill or brochure as might be needed.  Once the job was finished, printers would save blocks like this one to reuse in the future.  In fact, on the bottom of the piece of wood is the name and address of the long-shuttered print shop – evidently one my father patronized for advertising.  The store name appears in the jaunty, 1950s typeface he always used, the closest thing Wilton & Woolley ever had to a logo.

I felt like I had to have the thing, without knowing exactly why.  I’ve got no place to display it, no real use for it.  God knows we’ve already got way too much bric-a-brac in the house.  Yet, for 15 bucks I figured I could afford to free it from the auction block, so I did.

It arrived in the mail just after I got home from the hospital.  With its wood-block backing, it’s about 5 inches long. It’s hefty, substantial, reassuring to hold.  The wood still bears an ancient smear of black ink. To me, it feels like a link to my past.

I’ve got a few small items associated with my father, but not much.  Sadly, his life contracted in his later years, as he fell victim to years of substance abuse – alcohol and tobacco, the drugs of choice of his generation – and what was, very likely, undiagnosed clinical depression. After selling the store, he hit the road as a traveling salesman, first selling school library books for major publishers and, later, law books.  When he was motivated, Dad won all the sales awards.  Yet, inevitably, he’d grow tired of the grind.  He would slack off on the sales calls, get into some kind of argument with the bosses and they would part ways.   He jumped from one publisher to another in that way, every few years.  After he and my mother divorced, he switched to selling life insurance.  Abruptly, Dad moved clear across the country to the Central Valley of California, where he’d grown up, intending to start afresh in the life-insurance business out there.

My father ended his working life as a night clerk in a convenience store called the “Git-n-Go” (photo is not of his store).  By that stage of his life, he amiably settled for enough money to pay the rent and keep him in booze and cigarettes.  It didn’t seem to faze him when the store was robbed, twice, on his shift – once at knifepoint, giving him a little scar on his neck where the knife-tip had broken the skin.  He never even told us when these things happened.  We learned about them only years later.  Not a big one for communication, was my Dad.

After he almost died from a dissecting aortic aneurysm – that led to an air-ambulance helicopter flight to Stanford University Hospital for herculean surgery to give him a new aorta – he moved back east to Newton, Massachusetts, to an apartment down the street from my brother, Jim.  Dad had finally quit smoking by then – a month in ICU on a ventilator will do that to you – and there he lived the last year or so of his life, subsisting on two or three six-packs of Budweiser a day, because he figured it was better for him than the Canadian whiskey (and, later, vodka) he’d formerly favored.

Nothing of what my father did in his working life left any sort of legacy.  He always had the misfortune to find himself on the downward slope of major economic change, but did manage to bail out in time before the wave crashed.  First, the 1960s blue-jeans era reduced the market for “Mad Men” tailored suits and fedora hats.  Then, the advent of the shopping mall did away with most Main Street family businesses of any kind.  Dad did well in the book business for a few years, but was fortunate to jump ship before the Internet changed that world forever.  By then, I suppose he was feeling burned-out as a salesman, but it was all he knew how to do.  Life insurance was never a good fit for him.

I’ve only seen Arthur Miller’s “Death of a Salesman” once in my life, but I know I could never bring myself to do so again.  That grim drama’s just too close to home.

The printer’s block in my hand feels like a sort of legacy.  It’s solid and substantial, concrete evidence of a nearly-forgotten family business my father hoped and dreamed would outlast him.  Maybe he imagined that, in time, he would buy Mr. Woolley out, and he’d rename it “Wilton & Sons.”

At age 55, I’ve reached the stage of life where I’m thinking about my own legacy.  A couple of cancer experiences have pressed such ruminations upon me a bit earlier than most, and this recent surgery and slow recovery have reminded me once again that, as that spoilsport Isaiah puts it, “all people are grass, their constancy is like the flower of the field.” (Isaiah 40:6)

Myself included, of course.  Parish ministry is notorious, even in the best of times, for its abstract, hard-to-categorize results.  In this profoundly confused era, we who pastor mainline Protestant churches are all too often reminded that we’re serving a shrinking, aging market.  I’ve grown quite tired of reading articles in professional journals that include the familiar Cassandra-words: “If present trends continue...”

What will my children hold in their hands, one day, that reminds them of me, of my years of toil in the vineyard of the Lord?  A Bible, a calling card, a tarnished home-communion set, a disintegrating copy of one of the pulpit-helps books I’ve written?  As my books go out of print, much of what I’ve created, in the form of writings, lives now on the Internet: sermons once voiced in their time, but which now persist only as ghostly electrical impulses, mere droplets in a vast and ever-expanding sea.  As the church continues to lurch through rapid societal change, I wonder: will my grandchildren yet unborn even know what a sermon is – homely, spoken words of testimony, unadorned by electronic finery?

Ultimately, I suppose, my legacy is my children – as my brothers Jim, Dave and I are my father’s legacy.  After more than 20 years of ministry in one church, and 6 years before that of guiding others into ministry as a seminary assistant dean and admissions director, there’s also another group of people that are my legacy.  Those, of course, are the other lives out there I’ve touched, and – I hope, on my best days – influenced for the better.  Sure, a great many of the babies I’ve held in my arms at the baptismal font have drifted away from the church in adulthood, but not all.  In a time of convalescence such as I’m now going through, the many cards, emails and other caring communications I’ve received remind me that what I do continues to be appreciated.

“O that my words were written down! O that they were inscribed in a book! O that with an iron pen and with lead they were engraved on a rock forever!  For I know that my Redeemer lives, and that at the last he will stand upon the earth...” (Job 19:23-25).  For any of us, our true legacy is no block of wood with lead type fixed upon it.  It’s flesh and blood.  As it was for my father, it will one day be true for me.  Soli Deo Gloria.

Wednesday, February 08, 2012

February 8, 2012 – A Visiting Nurse Comes to Call

My surgery went well, or so the doctor tells me.  I was discharged from the hospital after one night, with a catheter, and am now recuperating at home.

This morning I had a call from a visiting nurse.  She was here about 45 minutes, all told, and spent all but about 5 minutes of that time taking medical history and filling out legal-consent and billing forms. She took a quick glance at the catheter bag and told me what I can expect in the hours to come. A different nurse will come tomorrow and, if all continues to go well, remove the catheter.

OK, I understand this was an intake visit for a new patient, and the home-nursing agency is now on call 24/7 between now and tomorrow morning in case I should experience any difficulty – but, still, the ratio of time devoted to administration as compared to actual medical treatment seems more than a little skewed.

I thought it was a total waste of time going over my medical history and dictating my medications list to the visiting nurse, when this information could easily have been forwarded by my doctor or the hospital.

As pleasant and – I assume – as competent as the nurse was, the visit was a case study of all that’s wrong with American medicine today.  It was a tale of compartmentalized agencies, separated by a wall of bureaucratic HIPAA regulations, failing to communicate essential information with each other....  An experienced R.N., spending just shy of 90% of her time on paperwork that’s more important to the attorneys and the accountants than it is to the patient....  An insurance company, bailing on their responsibility to cover another couple of days in the hospital, sending a medically-unqualified patient home to maintain his own catheter.

Thankfully, I’ve experienced no complications or problems so far.  But it could easily have been otherwise.

What is wrong with this picture?

Saturday, February 04, 2012

February 4, 2012 – More Surgery, Non-Cancer-Related


On Monday, I’ll be going into Ocean Medical Center for a long-postponed operation.  I could have had this done as long ago as last summer, but the surgery to remove my thyroid was more urgent, so this went onto the back burner.

For quite some time, I’ve been dealing with BPH, or benign prostatic hyperplasia – “benign enlargement of the prostate,” in everyday terms.  The word “benign” in that description needs to be emphasized: my PSA tests have all been normal, and there’s no reason to suspect any sort of malignancy.

The surgery I’ll be having is known as TURP, which stands for “transurethral resection of the prostate.”  According to my urologist, Dr. Daniel Burzon, it’s “the gold standard” in treating this condition: a long track record of success and a low likelihood of enduring side effects, even if the recovery from the surgery is a bit longer that some of the other alternatives.   I’ll spare you the somewhat grisly details of this procedure, Gentle Reader, but if you know how to access this blog, you’re probably very capable of doing a Wikipedia or Google search if you’re so inclined – and if you don’t mind some of the cringeworthy descriptions you’re likely to come across.

I’m supposed to show up at the hospital at 6:00 am on Monday for the surgery, and will stay there at least one night. I’m expected to be out of commission for the next week or so, and the doctor has told me I shouldn’t plan to lead worship on the following Sunday, because he doesn’t want me on my feet that long.

Since this is a cancer blog, I don’t expect to have much more to write about this experience in this space, beyond what I’m saying now.  Besides, given the nature of the surgery, I’m less inclined to comment about it publicly in any setting.  Because of my cancer history, though – and because of the fact that, to some minds, the words “prostate” and “cancer” seem to go together like peanut butter and jelly – I feel the need to get the information out there that I’m having this done, and that it’s in no way related to any malignancy.