June 29, 2019 — That Boulder in the Road

So, did you hear the one about the two massive boulders that dropped from the sky onto a Colorado highway?

Well, not from the sky exactly. They broke off a nearby mountain and went rolling downhill, completely blocking Colorado Highway 145. No one was hurt. But no one could get through on the road, either, until something was done.

These were no ordinary boulders. They were big. Really big. The largest one was big as a house.

The highway department figured they could dispatch the smaller one — the one weighing 2.3 million pounds — with dynamite. Which they did. Kaboom! Then they bulldozed away the rubble.

The larger of the two boulders — the behemoth weighing 8.5 million pounds — was a different matter. It would have cost nearly a quarter-million dollars to pulverize it. So, State authorities decided to take a different approach. The Governor issued an executive order declaring it to be a monument. They christened it “Memorial Rock.” Then they re-routed the highway around it.

There are at least two different approaches to a cancer diagnosis. Oftentimes, you can blow the tumor up with treatments like chemotherapy or radiation. Bing, bang, boom and you’re done with it. Onward and upward!

Other times, the obstacle is just too dang big. You can build a road around the thing eventually, but it’s always going to be there, a part of your life.

I think it’s creative the way the Colorado Governor declared the mega-boulder to be a memorial. He did it to qualify for some kind of Federal highway funding, but there’s a sort of poetic justice to his proclamation. When something that big drops into the middle of our lives, causing a massive detour, it’s automatically a memorial in and of itself.

So, if you live with cancer, as I do, I suggest you try to make the best of it. Slap a bronze plaque on the thing. Issue a proclamation. Do whatever you have to do to convert your “new normal” into a monument: to something, it matters not what.

Then, the next time you find yourself driving by, give the thing a thumbs-up or a tip of the hat. If nothing else, it’s a memorial to the challenge you rose up to meet, then vanquished.

(Thanks to Sarah Todd, who wrote the story in Quartz that gave me the idea for this.)

May 22, 2017 — Enough with the Battle, Already

I’ve written before about the many reasons why the familiar military imagery as applied to cancer survivors — her “courageous battle with cancer” — is not the most sensitive choice of words. I’ve seldom seen this topic explored so eloquently nor so concisely as in an article in the most recent issue of The Presbyterian Outlook.

The author is Ashley-Anne Masters, and the article is “Cancer Doesn’t Discriminate Between the Sinners and the Saints” (Presbyterian Outlook issue of May 29, 2017, pp. 48-49). She’s Interim Manager for Spiritual Care and the Heartlight Program at Lurie Children’s Hospital of Chicago:

“One side effect of cancer treatment that's as gross as nausea is the battle imagery. I can't stand hearing that someone who died from cancer ‘lost her battle.’ Anyone who ever endured cancer invading his or her body is anything but a ‘loser.’ The battle imagery is dangerous and painful. It implies that when someone dies of cancer, he died because he didn't fight hard enough. It implies that if someone chooses palliative treatment in the face of terminal diagnosis, she is giving up or not fighting.

It's also an unpleasant side effect for those living with cancer or thriving in remission. We celebrate and are grateful, yet battle imagery can add to a patient's symptoms of survival guilt. It does not mean he isn't (or wasn't) in the fight of his life during treatments. It does not mean she doesn't fear recurrence at annual scans. It does not mean they aren't strong and brave. But saying they ‘won the battle’ when they, too, have lost friends, colleagues and family members to cancer implies that they are somehow superior to the people they miss. Let's assist in savoring their celebrations and milestones. Let's not taint their gratitude and gumption with a prescription for guilt.”

Another reason, of course, why the battle imagery misses the mark — one that Ashley-Anne doesn’t mention, and in fact gets a little bit wrong — is that cancer is actually not an invasive disease, in the same way a bacterial infection is invasive. We don’t “catch” cancer. Cancer cells are manufactured by our very own bodies as a result of genetic mutations. While there’s sometimes an external cause that can be identified — as asbestos exposure is a leading cause of mesothelioma — it’s not the carcinogen that makes people sick, but their own body’s response to the carcinogen.

In cancer, certain cells of our body — for reasons that are often inexplicable — turn against other cells of our body: surrounding, quarantining and devouring them. That’s the true battle of cancer: not patient vs. disease, but cell vs. cell. The patient is the battlefield, not the steadfast soldier.

Visualizing ourselves “battling” cancer means we’re doing battle with our own bodies, and that’s hardly a helpful way of looking at it.

December 2, 2015 — Ten-Year Cancerversary

Ten years ago today, Claire and I were sitting in the office of my oncologist, Dr. William Lerner, feeling stunned by the news of my diagnosis with non-Hodgkin lymphoma. It was too much information to take in all at once. As happens with many who receive a cancer diagnosis, it rocked my world. I can remember sitting there and nodding my head as the doctor went into various details of my grading and staging and what to expect, but only retained about half of it. Thank goodness I had taken some notes to which I could refer later.

During the months that followed, I had surgery to implant a chemo port that would stay in my body for 7 or 8 years. I had six rounds of R-CHOP chemo, spaced at three weeks apart. I lost my hair, and dealt with all the weakness and queasiness that go along with a powerful chemo regimen.

I learned much about the love and support that come from family, friends and church during a season of serious illness. I ran up against the limits of my energy on numerous occasions, and learned how to step back and let others do things for me — never an easy thing for someone in a helping profession.

I had a subsequent diagnosis of thyroid cancer a few years ago, which led to the surgical removal of my thyroid gland followed by radioactive iodine treatment. There has been no recurrence, though I still see the thyroid surgeon, Dr. Jay Boyle, once a year for follow-up, as well as my endocrinologist, Dr. Stephanie Fish, who monitors my Synthroid dose. The thyroid cancer may or may not have been aggravated by radiation from the numerous CT and PET scans I’ve had, to look out for lymphoma recurrences (my doctors say it’s unlikely that the radiation from the scans contributed to the thyroid problem, but I do know the thyroid gland is the body’s canary in the coal mine with respect to radiation exposure — bottom line is I’ll probably never know for sure).

Because the type of lymphoma I have is an indolent form — one that can float beneath the diagnostic radar for years, and when it does recur is considered incurable but treatable — I’ll never be able to take comfort in being declared  cancer-free. But that’s OK. Life is good, I’m feeling fine and I’ve come to appreciate all the lessons this experience has taught me.

I’ve grown in faith, hope and love and am glad this blog has been a helpful resource to many others who are walking a similar road. From the bottom of my heart, thank you to all who have offered me support over the years.

November 10, 2015 - Virtue of Omission

Breast-cancer survivor Khevan Barnes describes, in an article published today in Cure magazine online, his unique outlook on being in remission:

“As I continue to find ways to live alongside my cancer, I am reminded of two things. Firstly, I am not in a battle with my disease. I am a conscientious objector. Cancer exists, and it may very well be present in my body, but I do not support it, either morally or spiritually. And secondly I am not in remission, I am in omission. No matter what the tests show, I categorically reject the notion of cancer diminishing my life experience.” (“An Existence Beyond Cancer,” November 10, 2015)

Hmmm... cancer survivors in omission. It’s got a ring to it. Barnes is calling on us survivors to strive to omit cancer from our lives — meaning an intentional decision on our part not to let it dominate our thinking.

The canon lawyers warn of sins of omission. Well, in this case, omission is a virtue.

The theologian Soren Kierkegaard is famous for saying,  “Life can only be understood backwards, but it must be lived forwards.” I think Barnes is echoing that thought. Yes, we survivors need to look back, and often, as we continue to make sense of our experience. For better or for worse, our cancer has made us who we are today. None of us asked for that formative struggle. It came to us unbidden. We would have run from it if we could.

Yet, cancer need not continue to call the shots in our lives. Yes, many of us are in remission — or, as Barnes prefers to say, in omission. Remembering what has gone before, and honoring that memory, we tell it to go back into its hole and allow us to live into God’s future.

September 3, 2015 - We Didn't Choose It

I ran across a remarkable essay today, called "An open letter to healthy people from a former healthy person." The author is Charis Hill, a young woman of Sacramento, California, who lives with a chronic inflammatory arthritis called Ankylosing Spondylitis (no, I hadn’t heard of it before reading her essay).

Charis writes of how she struggles to define herself to those she meets as someone other than a chronic disease sufferer (who wants to be known as a sufferer, anyway?). From her essay:

"Many of us you see who are broken, you know us only in our current brokenness. But remember, many of us once were full of life, full of vigor and energy. Remember, many of us still recall the days we had full control and freedom with our bodies. We desired everything and still believed nothing could keep us from being professional soccer players, chefs, teachers, doctors, parents, ballerinas. Remember when you see us that we once were like you, healthy and full. Remember that we still remember what we’ve lost. Remember we still have hopes and wishes and dreams, and they are no less important, no less meaningful, and no less worthy than yours.

We love. We dream. We hope. We fight. We need. We survive. We succeed and fail. We live. Love us...."

Chronic illness is a life-transforming experience. After the rock-my-world disruption of diagnosis — and after we’ve got some months of treatment under our belts — we find we are different, as a result of what we’ve gone through and continue to go through.

There are significant losses that are sometimes hard to describe to others:

"We are still alive but we grieve the loss of who we were before this weight of helplessness and disease was inserted into our chest, our brains, our backs, our hearts. We have been blessed with the curse of witnessing and grieving our own symbolic deaths as we learn to be something or someone we never imagined we’d see in the mirror. We learn to see ourselves from the outside looking in (while desperately peeking outward) because we are strangers in these new bodies and we may never know how to inhabit their unpredictability. If the pain doesn’t take your body the side effects of the pain medication will."

Charis wisely resists the tendency some of our neighbors have to clap us on the back and tell us how commendable we are for our "courageous fight." Of all the things people said to me during my months of chemotherapy, it was this sort of comment that rang most hollow. I didn’t want to be commended for being sick. I hadn’t chosen it. If I’d had the choice, I would have run the other way and cheerfully claim the label of coward.

It’s hard to own the adjective "courageous" when we have no choice in the matter.

Charis evidently feels the same way:

"We are not strong, we are not admirable, we are not role models because we woke up and chose to be. We are strong, admirable role models because we have no choice but to fight for sanity and purpose every day of our lives, with every beat of our heart, with every step of our feet or our cane or our walker or our wheels. What we do is not commendable because our career dream as a third grader was to become a chronically ill warrior. What we do is commendable because we do not give up the fight against what we did not choose to become. Because we have two choices: give up or fight."


Amen.

May 12, 2015 — The Mountain Lion in the Fridge

“What’s it like to go through cancer treatment? It’s something like this: one day, you’re minding your own business, you open the fridge to get some breakfast, and OH MY GOD THERE’S A MOUNTAIN LION IN YOUR FRIDGE...”

That’s the beginning of a rather creative blog post by a cancer survivor named Caitlin Feeley. It brought a smile to my face because it’s so accurate.

Not the mountain lion in the fridge part, of course: but the things various people say to you as you’re trying to claw your way up the mountain where the only creature capable of fighting off the mountain lion — a bear — happens to live. Things like, “That’s not really a mountain lion, it’s a puma,” and “I read that mountain lions are allergic to kale, have you tried rubbing kale on it?”

I don’t feel right about cutting and pasting the whole thing here, but here’s a link where you can read the whole piece.

Well done, Caitlin. You captured the experience.

February 28, 2015 — Dear Cancer, I Hate You

“Dear cancer, I hate you.” Those words that begin the personal essay are jarring. They’re written by a young woman named Jenna Rose Lowthert, in an essay published in our local newspaper, in memory of her mother, Gina.

Gina died of cancer.

Yes, cancer is something we come to hate. But — as in the odd occurrence of the word “dear” in this letter’s opening — there’s also a macabre intimacy to it.

We live with cancer — both those of us who are actively being treated, and those of us in remission. We hate it, yes. But it’s also become part of our lives.

It’s part of us. A symptom of our fallen condition on this earth, perhaps. A dark mystery. The intimate companion we never invited into our lives.

Here’s some of what Jenna wrote (click on the link above to read the whole article):

Dear cancer,

I hate you.

You’re terrible.

You are the true definition of a heart breaker.

You single-handedly ruined my entire life in the matter of 10 short months.

You took away my best friend, the only person in this world who will ever love me unconditionally.

You took away my mother — and you took her in the most horrible way possible. You stopped her heart from beating at the young age of 48....

Yet, as Jenna has evidently discovered, cancer is also a teacher, although a harsh one:

The same thing that drives me to live after this loss is the same reason I hate you.

But cancer, you did not win the day my mother gained her angel wings.

You did not beat her. She beat you, as she left this world with her love, her hope, her strength, her bravery and her dignity, surrounded by the people who she loved the most.

You may have destroyed a lot, but you have, in turn, taught me lessons I never thought I would learn by age 25. You showed me just how short and precious life truly is. You showed me that every day is a gift and that I should never take anything or anybody for granted. You have forced me to recognize a strength within myself that I never knew existed.

Cancer, although I hate you with all of my heart, you have brought out the woman in me that my mother always hoped I would be....

And that is why you did not win.

Cancer is our teacher, but it is also our adversary. In contending with this challenge, we grow stronger. And better.

Who’s to say if this is the best way for us to grow? Who’s to say if God could have accomplished the same purpose in some way that’s easier, less painful?

From our limited vantage-point, we can never say for sure. But we can strive to live with cancer. We can strive to do it with courage, as Jenna and her mother have.

August 7, 2014 — Lessons from Valerie

Valerie Harper was a fixture on TV sitcoms when I was growing up. From her role as Mary Richards' BFF on The Mary Tyler Moore Show, to her own spinoff, Rhoda, to a host of other TV and stage roles, her brand of wacky, self-deprecating humor has had a long run.

Now, her days are filled with thoughts of something decidedly not funny: lung cancer, metastasized to the meninges, the membrane surrounding the brain. She’s receiving experimental treatments, hoping for the best and trying to get the most out of every day.

She never smoked. Although many people hear the words “lung cancer” and say to themselves, “Oh, another smoker,” that’s certainly not true of every lung-cancer patient. In Valerie’s case, it’s probably in her genes. Her mother, also a non-smoker, succumbed to the same disease.

A recent article in the AARP Magazine describes Valerie’s active way of engaging the disease. Here are a few things that have worked for her:

1) Visualization: “She has also been practicing imagery, envisioning a tiny Tinker Bell-like version of herself moving through her meninges, tapping her cancer cells with a magical finger. ‘They then become glowing little good cells,’ she explains with a giggle, ‘or, if they’re not willing to give up their cancer-ness, they just turn into white lights. I talk to them, saying, “Listen, you guys, this is dumb. We could live together. But you can’t keep growing and crowding out the other cells. You’re killing the host!”’”

Visualization didn’t do much for me when I was receiving cancer treatment, but I know it’s a technique many survivors swear by. What I find especially healthy about Valerie’s approach is that she doesn’t treat the cancer cells like invaders, like some bacteria. She’s fully aware that her cancer cells are part of her own body. They’ve just gone rogue. If she’s able, by focused thinking, to influence the behavior of those cells, so much the better.

Note that she doesn’t employ the familiar military metaphor here. She’s not “battling” cancer. She’s accepting it as part of her own body, a malfunction in her genes. She’s trying to reason with it. Whether or not her visualization exercises are having any real effect, who’s to say? We do know the mind-body barrier is somewhat porous, though — so, why not?

2) Humor: As one might expect of a comedian, Valerie lightens the situation with humor: “‘I’m past my expiration date,’ Harper jokes as she addresses a small crowd.... “But really, I am holding my own, as you can see. My motormouth has not stopped! Seriously,’ she continues, ‘what I have is not curable. That’s not the way with this disease, apparently. But who knows? This diagnosis makes you live one day at a time, and that’s what everyone should do: Live moment to moment to moment.’”

Note the realism in Valerie’s remarks. I’m sure she hasn’t stopped hoping for a miracle, but she’s not planning on one. There a real centeredness about that approach: living, as fully and intentionally as possible, in the now. Humor helps ground us, moving our thoughts away from future dread and back into the present.

As Valerie’s former Mary Tyler Moore Show co-star, Betty White, says of her: “She’s kept her sense of humor and balance. My beloved husband Allen Ludden [who died from stomach cancer in 1981] had that same attitude, and I swear it added a year we wouldn’t have had.”

3) Gratitude: “‘Look, I was 73 when I got this news,’ says Harper. ‘Not 43. Not 28 with little children. I don’t want to leave my daughter or this doll of a husband. But I have to be realistic. I’ve had a lot of great stuff — spectacular stuff — happen to me. I’ve got to not be a pig about life.’ She tosses her head back and laughs.”

That calls to mind the line from Proverbs 31:25, the description of the “capable wife,” who’s so much more than merely an appendage to her husband, a wise and strong woman:
“Strength and dignity are her clothing,
and she laughs at the time to come.”

Some people, dealing with a discouraging cancer prognosis, would focus only on that, but Valerie explains how she’s focusing on the goodness she’s enjoyed. She’s determined “not to be a pig about life.”

According to the article, Valerie has accomplished all this without relying on resources of faith (at least, not faith in the conventional sense). She’s not a religious believer, but has pursued self-help programs from the human-potential movement.

Visualization, humor, gratitude: these are resources anyone can tap into. Of course, from my perspective, I’d say faith takes us far beyond any strength we can summon up from within ourselves, or by relying on loved ones. There’s no reason, though, to belittle resources such as these, which are formidable.

We can be grateful to Valerie for being such a good teacher, and sharing her inner life so freely.

June 25, 2014 — Comfort In, Kvetch Out

A friend shared an article with me the other day that contains a piece of advice that’s so practical - so downright sensible - it seems incredible no one has thought it up sooner.

It comes from a newspaper article that’s about a year old. In a Los Angeles Times article, "How not to say the wrong thing," April 7, 2013, co-authors Susan Silk and Barry Goldman address the age-old question, “What do you say to somebody who’s sick?

To understand the advice, you have to conjure up a simple diagram composed of concentric circles with a dot in the middle. The dot is the sick person. The first circle around the sick person is the sick person’s closest relative — a spouse, a parent, a child. The next is other immediate family. Then comes extended family. After that, friends. Then, close co-workers. Then, people in the next office who nod hello to them at the water cooler. Keep drawing circles until you work down to the level of casual acquaintances.

The categories associated with one person may be a bit different than for another. Some people are closer to their best friends than to their family. It’s not so much the labels on the circles that are so brilliant, as what you do with them.

After you’ve plotted your own location on one of the circles, take a look at those who are closer to the patient than you. Then, turn around and observe those who are not so closely connected as you are.

The Comfort In, Kvetch Out rule is this: When you turn towards those who are closer to the patient than you, what you say should be words of comfort. When you turn towards those who are in a less intimate relationship than you, then you can feel free to kvetch — to complain about how bad your friend’s or relative’s illness makes you feel, or how it inconveniences you.

We all need to kvetch from time to time. The art is in deciding who we kvetch to. If our kvetching is directed outwards, that’s fine. If it’s inwards, it can be a burden to those who are already carrying more burdens than we are.

The most important person in the system — the patient — is allowed to kvetch 100% of the time,  no questions asked. As for the communications they receive from others, the goal is 100% comfort.

From the article:

“When you are talking to a person in a ring smaller than yours, someone closer to the center of the crisis, the goal is to help. Listening is often more helpful than talking. But if you're going to open your mouth, ask yourself if what you are about to say is likely to provide comfort and support. If it isn’t, don’t say it. Don’t, for example, give advice. People who are suffering from trauma don’t need advice. They need comfort and support. So say, ‘I’m sorry’ or ‘This must really be hard for you’ or ‘Can I bring you a pot roast?’ Don't say, ‘You should hear what happened to me’ or ‘Here’s what I would do if I were you.’ And don’t say, ‘This is really bringing me down.’

If you want to scream or cry or complain, if you want to tell someone how shocked you are or how icky you feel, or whine about how it reminds you of all the terrible things that have happened to you lately, that’s fine. It's a perfectly normal response. Just do it to someone in a bigger ring. You comfort people in the smaller rings. You kvetch to people in the larger rings.”

One important take-away from the article is that advice-giving is a variety of kvetching. You may think you’re helping the person in the smaller ring, but you’re not. Most of the time, advice-giving is more about meeting the needs of the advice-giver than it is about genuinely helping the advice-receiver.

Very likely, what the person in the smaller ring yearns to receive from you, far more than advice, is listening. Listening is one of the most important forms of comfort.

Comfort in. Kvetch out. Not a bad little rule, don’t you think?

June 3, 2014: Seasons of Survivorship

I feel like my life as a long-term lymphoma survivor is like those series of photos you sometimes see, depicting a changing landscape through many seasons.

The concerns of a survivor immediately after diagnosis are quite different from those of a person who’s been through various treatments — be they “watchful waiting” or something more aggressive — and years of wondering when, or if, treatment will ever be required again.

A recent online interview with an experienced cancer nurse — Richard Boyajian, RN, NP, Clinical Director from the Dana-Farber Brigham Cancer Center — describes this changing landscape.

Although many people tend to lump all experiences together under the label, “cancer,” indolent lymphomas are a very different animal. Everyone wants a treatment plan. Nobody wants a “waiting plan”:

“One of the most difficult things about follicular lymphoma is that it is often more of a chronic disease. You have to treat it like a different animal. If it's not aggressive we tell patients, ‘We'll follow you until it gets bad enough that we want to treat it.’ This approach is often called 'watch and wait,' which can be very emotionally and psychologically difficult for patients to understand and deal with because they don't have an action plan they have a waiting plan. One of the most important parts of survivorship for follicular lymphoma is making sure patients are able to cope with that type of an approach.”

A certain psychological strength is needed. A few of us, I suppose, demonstrate such strength from the beginning. A great many more of us gain it along the way, like a gym patron going through repeated rounds of exercise.

What it’s all about is learning how to live with the unknown:

“For me, one of the most important parts of follicular lymphoma survivorship is acknowledging that it can be very stressful psychologically upfront so the patient knows what to expect and knows that their feeling are normal.

Frequently, after their treatment, patients want to know, ‘When is it going to come back? Is it going to come back?’ Those are really difficult questions to answer because everyone is so individual. Trying to get people comfortable with the unknown is one of the challenges we face as health care professionals.”

Boyajian encourages us to look on indolent-lymphoma treatment not so much as striking a single, decisive blow as resetting a clock. Treatment typically doesn’t wipe it out, but merely pushes it back, after which it can be expected to return eventually:

“Patients should understand that there is a natural timeline for follicular lymphoma; but our goal is to reset the clock. If a patient has a poor timeline because they have an aggressive disease, that's an indication that more aggressive treatment is needed and will change the natural history of that timeline. Someone with an indolent disease and a longer timeline might have a watch-and-wait approach where we make sure the disease doesn't change and become more aggressive.

That's why it is important to discuss the emotional impact of 'watch and wait.' Someone that doesn't need treatment may have a poorer quality of life because they are constantly thinking about their disease and cannot really go on because they're so overwhelmed with it. We want patients to live a long time, but they also need to make sure their quality of life is good. These two things go hand in hand. If people aren't enjoying the life they have, whether it's long or short, that's very upsetting for me.”

Depression is a normal feature of the disease. For me, personally, this has been one of the most difficult learnings. To most people, depression seems an aberration, a disease in its own right that ought to be curable. Often it takes the form of a self-destructive feedback loop: you realize you’re feeling depressed, which makes you feel even more depressed.

Yet, we can also see depression as an indolent disease in and of itself. Or, maybe it’s simply the cancer viewed from another perspective — the mental manifestation of the disease.

Boyajian is realistic about this:

“It is normal to feel anxiety and depression after getting a follicular lymphoma diagnosis but anxiety and depression can cause people to make decisions that may not be in their best interest. We need to ensure that every patient diagnosed with any type of cancer knows it is okay to talk about their concerns and fears. Getting the right treatment for anxiety or depression should be considered a priority.”

There can be a tendency, after treatment begins, to put off other tests and treatments, as cancer becomes the all-consuming priority. I can recall, for example, wondering whether I should postpone going to the dentist, because if I were going to die anyway, what did it matter if I never got that cavity filled?

That’s a mistake, as Boyajian points out:

“Besides following blood counts and the size of your lymph nodes for infection, it is important to remain connected with your primary care doctor and get all of the necessary screenings. Patients should get the normal health screenings as part of the standard medical survivorship follow-up. If a patient has diabetes, heart disease or high blood pressure it is just as important to manage that as well as their cancer. Poorly controlled diabetes will cause more problems than slow growing follicular lymphoma and may also affect future treatment options. The healthier you are, the more options you have so a healthy diet, exercise and maintaining a good weight are very important.”

We survivors learn to take care of ourselves, through every season.

June 2, 2014 — Long-Term Survivorship

This excerpt from the online memoir of a follicular lymphoma survivor, Evelyn Lipori, mirrors my survivorship experience — of the journey from panic and fear to a deep assurance of hope. Evelyn is Director of Individual Giving for the Lymphoma Research Foundation.

There’s quite a difference, as Evelyn points out, between the days right after diagnosis...

“I was only 37 years old and the reality of a cancer diagnosis quickly set in. I became consumed with thoughts of dying, of leaving my husband with our two young children, of not being here for graduations and weddings. I was worried I would never see grandchildren.”

...and the relaxed and assured viewpoint of a veteran...

“Over the years, my perception of survivorship has undoubtedly evolved. In the early days, I was simply grateful to have ‘survived’ my diagnosis and subsequent treatments and still be alive. But today it means many things I never quite imagined.

For me survivorship means hope - finding hope through education and knowledge about my disease and giving hope to others by sharing my experience with newly diagnosed patients.

Survivorship means giving back. I've been involved with LRF in various capacities ever since my diagnosis - as an advocate, a volunteer, a board member, a donor, chapter president and most recently in my current role on the LRF staff as Director of Individual Giving.

Most importantly, survivorship means living life to the fullest despite the 'dark cloud' of a lymphoma diagnosis that can seem to follow you wherever you go. So much progress has been made and continues to be made in lymphoma research that there are now treatments becoming available that were barely an idea in someone's laboratory back in 1997. I live each day with the comfort of knowing there are many alternatives should I ever need treatment again.

In the meantime, I've seen my kids grow up, graduate from high school, college and graduate school. John and I just celebrated our 32nd wedding anniversary and each passing year brings me closer to seeing my children's weddings and the grandchildren I never dreamed I would be here to see.

Cancer survivor? You bet I am!"

January 27, 2014 - Never Off-Duty

Today I run across a blog posting by a fellow lymphoma survivor, Ethan Zone. He reflects on how difficult it is for anyone who hasn't walked this particular road to know what it's like to live through months and years of survivorship, following treatment.

Most people, he says, think the battle is over when that blessed word "remission" first falls from our doctor's lips. But that's not so. It's something like a Cold War that only begins after the "hot war" ends:

"The general perception of cancer – especially in this rugged-individualist, pull-yourself-up-by-your-bootstraps country – is that there are winners and losers. We prefer to see it like a football game: you either beat cancer and win the Superbowl; or you lose to cancer, and sayonara, shiny trophy/life! There is no in between. The reality of my situation is that I did everything in my power to beat cancer, and I did. But the cancer came back, and my life got blown apart at the seams all the same. And I think that’s okay, too. There are millions of people out there living with cancer, longing for stability, and functioning with the reality that this horrible disease may come back."

Many of us assemble posses during the active phase of our treatment. Good people present themselves - family and friends - to help us with chores, offer us rides, pray for us, offer encouragement. These are some very special people, whose positive effect on our struggle with the disease is incalculable. Yet, there comes a time - for those of us who do achieve remission - when most of them slip away, with a smile on their faces.

That's as it should be. There are others who need their help more. Yet, few realize that, for the patient, the struggle isn't over. It's only entered a new phase:

"I have come to realize, however, that people tend to join your regiment during the arms race build-up between a cancer diagnosis and the execution of the treatment protocol. But afterwards, once the immediate danger (as they presume it) has passed, they tend to forget all about the 'war,' their shiny 'weapons,' and they slip back into their normal, civilian lives. And my point isn’t that they are thoughtless, because they aren’t. They just don’t know. But those of us who do know don’t forget. The psychological hangover is long and dark. Of course good news deserves a euphoric dance party, but it’s important to remember the post-remission patient because there are dump trucks full of uncertainty and invisible scars that need healing."

I've never been fully sure whether or not I'm in remission. Eight months after my last chemo treatment, in 2006, some signs of returning cancer started showing up in my scans. Dr. Lerner was able to see some low-level recurrence, but he assured me that what I have left is an indolent form of the disease, and the most appropriate response is to "watch and wait." This we did for the next several years, merely noting the new tumors on the scans - until, 2 or 3 years ago, the hot spots stopped showing up altogether. And still we watch and wait, even if there's no longer anything to watch.

Were these just scan anomalies? Or did my out-of-remission cancer simply slip below the radar, where it's still indolently lurking, ready to return someday?

No one can say. It's been more than 7 years, now, since my treatment ended. The old conventional wisdom is that after 5 years of no recurrence, you're "cured." Yet, I've been told that particular "c-word" can never be applied to my situation - because indolent cancers, by definition, are very good at hiding. Sometimes, for long periods of time. Which means you never feel like you're completely out of the woods.

Thanks to Ethan, for describing it so well.

January 9, 2014 — Who Am I?

Today I read an article by my friend and seminary classmate Kathleen Long Bostrom (“Identity Crisis,” Horizons, The Magazine for Presbyterian Women, January/February 2014). It speaks to where I am right now, in these days of recovery.

Kathy’s writing about what it feels like to take early retirement, for medical reasons. (She’s been dealing with a chronic obstructive lung disease for some years now.) Kathy had been serving as a co-pastor alongside her husband, Greg Bostrom. He continues in the pastoral role, in the same church. She’s now devoting her attention to her part-time writing career (she’s an acclaimed author of religious children’s books).

In my case, no one’s talking about retirement. The breathing difficulties caused by my matched pair of pulmonary emboli are expected to diminish in time. I fully expect to return to full-time pastoral work when that happens — but for now, I’m on temporary disability from my work at the church. With the three hospitalizations I’ve had this fall and winter (the most recent ending on December 28), I’ve had a few setbacks of the two-steps-forward-one-step-back variety.

Back in 2006, when I was receiving chemotherapy for non-Hodgkin lymphoma, I was also dealing with a kind of disability. But, that was different. With a once-every-3-weeks chemo cycle, I could anticipate one week of being out sick, a second week of moderate energy, and a third week of relatively normal functioning. I never did go on full-time disability.

It’s different this time. The blood clots in my lungs restrict my breathing, meaning I get winded very easily — even after the relatively minor effort of climbing a flight of stairs. I’m making progress with my outpatient physical therapy, but it’s slow (especially since each hospitalization has led to some deconditioning, setting me back a few spaces on the recovery gameboard each time).

The nature of pastoral ministry is such that it’s hard to step back from full-time to part-time. As far as the congregation is concerned, you’re either back or you’re not. I’ve received advice from numerous people not to attempt part-time ministry. It’s hard to set reasonable limits. It’s easy for a task-oriented person like me to overwork. Also, the congregation tends to think that, if they see you up in front, leading worship, many will assume that you’re back 100%, even if you’re not.

I asked my pulmonologist, Dr. Gustavo De La Luz, how long it will be before the emboli dissolve, and he said the average is 3 months. I’m coming up on that date at the end of this month, and I have noticed some modest improvement. The last scan I had at the hospital showed one embolism has gotten smaller.  But I’ve also had unusual complications: the big internal bleed I had during my first hospitalization, and two incidents of temporary kidney failure, caused by the CT-scan contrast dye (which my body can evidently no longer tolerate).

The result is that my disability is frustratingly open-ended. No one can predict with any accuracy when I’ll be ready to return to my pastoral duties. Recently, I’ve been advised to fill out the Presbyterian Board of Pensions’ disability paperwork, so that — if I’m still sidelined when I hit the 90-day anniversary of my diagnosis at the end of this month — I can begin collecting a temporary disability pension (which would save the church two-thirds of the salary they’ve graciously continued to pay me).

I learned years ago that, if there’s any advantage to receiving chemotherapy for lymphoma, it’s that the treatment’s progress is tightly regimented. With one treatment every three weeks, there was a predictable “chemo cycle” governing how sick I could be expected to feel.

Not so with this pulmonary embolism thing. The clots will dissolve when they dissolve. No one can predict how long that will take. Nor can anyone predict how fully the lungs will recover after the clots are gone. Some patients find that some of their lung tissue has become “necrotic,” after all that time deprived of oxygen from the bloodstream. That essentially dead lung tissue will never recover. No one can predict how much necrotic tissue there is, nor how it will affect my long-term recovery. The deep-vein thrombosis in my leg (for which I’m being treated with the anticoagulant, Coumadin) also bears careful watching. I’m wary of the possibility of another hematoma, even though I’m on just one anticoagulant rather than two, and I’m being carefully monitored by a hematologist (my oncologist, Dr. Lerner).

During my cancer treatments, I was able to make some modest plans around the ups and downs of the chemo cycle, that’s not possible in this case. I’m living day-to-day, pursuing a recovery of indeterminate speed and duration.

I can vividly remember the experience, on Easter Day, 2006, of looking across the street from my bedroom window, sick as a dog from my most recent chemo treatment, watching the congregation arrive for worship in all their Easter finery. It was a strangely disjointed feeling. It felt unnatural not to be there.

With my present pulmonary difficulties, that’s my experience every day.

Which brings me, at long last, to Kathy’s insightful article. She admits to feeling a certain kind of “identity crisis” as she transitions into early retirement — becoming no longer one of the church’s pastors, but merely the pastor’s wife.

“Who am I,” she writes, “now that I am no longer the pastor? Who are any of us, apart from the labels that define us, that can be cumbersome, even limiting, but that also give us a sense of identity and purpose?”

Musing on the experience of serious illness, she observes how we can “lose our intrinsic identities even further and become ‘a cancer patient,’ rather than ‘Joan, who happens to have cancer.’”

When I was in the hospital, I wore a plastic ID bracelet with my name, my birthdate and a bar code on it. Every time a nurse came in to give me medication, or a technician to draw blood or give me a breathing treatment, I would be asked to repeat my name and birthdate, so the hospital employee could check that information against my bracelet. Then, the person would scan my barcode with a little handheld device. This was for medical-records purposes, but I was also aware that it was related to the hospital’s billing process. It was the medical equivalent of waving a box of Cheerios over the bar-code scanner at the supermarket checkout. Every pill I swallowed, every new bag of IV saline solution, had its price.

In the hospital, the uniformity of my hospital gown and the ubiquitous presence of my ID bracelet proclaimed that my identity, as a patient, was pretty much limited to my medical condition. Pastor, husband, father, friend — all those roles diminished to secondary importance. Name, birthdate, barcode: those were my new identifiers.

Now that I’m home, and my main activity is getting better, it still doesn’t feel all that different. Many of those things I used to do, by which I defined myself, aren't part of my life at the moment. Even with family relationships, things have changed. I no longer do many of the things I’m used to doing as husband and father. Others must do some of those things for me.

Kathy quotes a little poem by theologian and martyr Dietrich Bonhoeffer, “Who Am I?”, which concludes with these words:

Who am I? They mock me, these lonely questions of mine.
Whoever I am, thou knowest, O God, I am thine.

Kathy then goes on to observe: “I am who I have been from the very beginning: I am a child of God. That has never changed. It is who I will always be, even though that identity has gotten lost in the shuffle of my labels. First and foremost, now and always, I am a child of God, which is what we all are, no matter the labels that have stuck to us over the years.”

Maybe that’s the lesson God is teaching me, through this protracted recovery. Ministering to the dying and their families, I've experienced the truth of the old cliché: “No one ever says, on their deathbed, ‘I wish I’d spent more time at the office.’” We're not defined by what we do, but by who God has created us to be.

Kathy’s right. At the end of the day, “child of God” is what we are. All of us.

November 16, 2013 - The Best Gift Nobody Wants

There's a great deal of wisdom in this brief (3 minutes) TED Talk from 2010, by cancer survivor Stacey Kramer. It expresses a viewpoint very similar to my own, when it comes to the unexpected gifts cancer can bring. (The last several minutes are a commercial you can skip.)

April 6, 2013 — Newly Diagnosed? Tips from the Lymphoma Club

I found a great website today called the Lymphoma Club, which includes a helpful page containing tips for those newly diagnosed with lymphoma. This list is a bit long to absorb on one reading — 27 tips in all — but it’s well worth having a look at.

I’ve rearranged some of them into what I’d consider my Top 10. So, they’re renumbered, with the most important at the bottom. Where I thought a couple of the originals overlapped, I’ve combined them. I’ve added my own comments after each one.

10. Get organized.  Consider a binder. 
Or a series of computer files. Or whatever works for you. But you’ve got to have some kind of system for managing the tsunami of data you’re about to get hit with — some of it electronic, some of it paper (lab reports, prescription scripts, etc.), much of it stuff you’ve never heard of before. Start keeping an overall calendar of your treatment: you’ll be surprised how fast the weeks and months go by, and before you know it, you won’t be able to remember how many CT scans you’ve had, and when. Get in the habit of keeping a current medications list.  You’re going to be asked for that information more times than you could possibly imagine (mine lives in my smartphone).

9.  Find cancer support groups (ask your cancer center or search online).
For whatever reason — pride, idolatrous self-sufficiency, reluctance to deal with the weird reactions we ministers get from some people outside the church setting — I waited way too long to do this. The time to start going to a support group is BEFORE you think you need it. From the day of your diagnosis, you’re a cancer survivor. So, you can be sure there’s more than one group out there where you’ll be welcomed like you’re family, and (just like that old sitcom theme song) everybody knows your name.

8.  List ways family and friends can help you (chores, rides, cleaning, etc.).
This is a biggie. If you hear that little voice inside your head, saying “But I don’t want to impose on others,” speak sternly back to it, saying “GET BEHIND ME, SATAN!” (That’s a biblical allusion, for those unfamiliar with it.) You’ve got cancer. You need help. There’s absolutely no glory in trying to go it alone. Get used to it.

7.  Have a trusty advocate  join you during appointments to take notes and help  ask questions.
Remember that tsunami of information I mentioned above? This is one essential way of managing it. The necessity of bringing a friend or relative with you goes way beyond just sorting out a lot of medical jargon. You see, there’s a very common emotional reaction that’s especially strong at the time of diagnosis and just afterwards. You’ll be having a perfectly rational conversation with your doctor, and you’ll say to yourself, “No need to write that down, I’ll remember it,” then five minutes later as you’re walking out to the car, you’ll say, “Now did the doctor say my cancer is large-cell or small-cell, and which one is more treatable?” This has nothing to do with your intelligence, nor your memory power. It’s a species of denial. No matter how much you may imagine you’re cool, calm, collected and handling this pretty well, the reality is, you’ve just learned something that’s rocked your world, so your subconscious is saying, “That’s enough, I’m outta here!” You need that second set of ears, especially now.

6. Get educated. Know the details of your cancer diagnosis but don’t spent too much time online.
This is information-tsunami management, part two. To some extent, how you do this is an individual thing, but there are so many advantages to doing it — taking charge of the situation and becoming your own advocate — that this one makes my top-ten list, hands down. There’s a wealth of information out there, but the trick is separating the wheat from the chaff. Start with a good book on the details of your disease (I recommend Living With Lymphoma by Elizabeth M. Adler, a microbiologist and lymphoma survivor - Johns Hopkins, 2005). As for the internet, don’t be afraid to troll for useful information online — it’s not so much the amount of time you spend online, as where you go to find your information. Start with highly-reputable sites like the Leukemia and Lymphoma Society, or the National Cancer Institute, or the websites of world-renowned cancer hospitals. Then, move slowly outward from there (but always following links from these trusted sites). If you have any experience at all surfing the net, you already know it’s the Wild West out there when it comes to documentation and accuracy. It’s so very easy to wander down one of those electronic rabbit trails, and before you know it, you’re reading about how to cure lymphoma by wearing a crystal around your neck. Know, also, as you cancer-surf, that we all have a common defense mechanism that leads us always to jump to the worst-case scenario. All we need do, sometimes, is glance at a list of possible symptoms, and we’re quite sure we’ve got every one of ‘em. (The defense-mechanism angle is that our subconscious irrationally imagines we can protect ourselves from pain by inoculating ourselves with that same pain, even if there’s scant evidence for it; one of the reasons we have doctors is to protect us from such craziness).  Oh, and the other, similar tip about learning to read a lab report is absolutely correct. Learn what the most important of those little abbreviations on your CBC (complete blood count) mean, so when one of them shows up as elevated, you don’t flip out. Sometimes an elevated count is a big deal, but more often than not, it’s just normal variation.

5.  Feel free to seek a second opinion.
I agree with this as far as it goes, but I’d be much more emphatic. (Deploy megaphone.) GET A SECOND OPINION, STUPID! (Put away megaphone.) Sorry for the “stupid” moniker, but I had to get your attention. It doesn’t matter how much you like and trust the doctor you start with, cancer research is such a huge and complex universe that no single individual could ever be familiar with it all. If your oncologist is any good at all, he or she will have absolutely no problem with your seeking a second opinion, and will probably encourage it. On the other hand, if your oncologist bristles at the suggestion and starts bragging about his or her own medical credentials, then RUN, DON’T WALK to another doctor who better demonstrates the spiritual gift of humility. It’s exactly that sort of fall-in-love-with-yourself pride that leads doctors to overlook important details. Nowhere is this more crucial than in your all-important pathology report. And, do you know what? Your pathologist is by far your most important doctor you never meet. (The pathologist is the one who looks through the microscope at your biopsy slides and identifies your type of cancer cells, carefully counting how many of them there are, which determines the whole course of your treatment.) When you go from your local physician to an evaluation at a major cancer center (or, if you start with a major cancer center and go from one center to another) you get a new pathologist’s opinion along with it. You may well stick with your original doctor after getting the second opinion — or not, it’s up to you — but even if you stick with the original doc, he or she is going to be grateful that you presented the second opinion, which makes diagnosis and staging easier. (IF the doctor’s any good, that is — see “humility,” above.)

4. Pick an oncologist, one you feel comfortable with.  Preferably an expert in your type of cancer.
You DO have a choice. It’s your cancer, so you have a right to find a doctor you have confidence in. Whether it’s your first stop or a second-opinion consultation (see above), I HIGHLY, HIGHLY recommend checking out a National Cancer Institute (NCI) comprehensive cancer center. These are the cancer research hospitals that have access to the most up-to-date research findings and are able to point you to clinical trials, if that’s called for. If it’s a long journey between your home and a comprehensive cancer center, then consider working through a local oncologist who has strong ties with one of those centers (that’s what I do). And by the way — this is also real important — the mark of a good cancer hospital is not, I repeat, NOT how much money said hospital spends on TV advertising. The most prolific advertisers among cancer-treatment hospitals are certain for-profit institutions who garner impressive treatment results by cherry-picking the most treatable patients on the front end, discouraging those whose prognosis is less positive. (You won’t find these big advertisers on the NCI’s list, and there’s a reason for that.) This is ethically questionable behavior on the part of those who most stand to profit financially from that sort of approach. As with anything else that's driven by the profit motive, caveat emptor.

3. Continue to celebrate life in spite of cancer. You still have your identity. Don’t lose it. Participate in hobbies, live life and do the things you love to help keep you focused.
We’ve already established that a cancer diagnosis rocks your world. But that doesn’t mean you need to stand idly by and let it take over your world. Don’t let yourself become a cancer victim. Be a cancer SURVIVOR. There’s a huge difference, that has a lot to do with the degree to which you spit in cancer’s face and go on living your life, anyway.

2.  Find ways to relax and cope (yoga, guided imagery, music, hobbies, faith etc.). 
OK, I’ve elevated this to number 2, even though I have a major quibble with how it’s worded. Faith is not, I repeat, NOT in the same league as music, hobbies and the other items on that little list. There’s a common tendency in our non-sectarian society to label faith a “leisure activity” and lump it in with all sorts of more trivial  pursuits. A cancer diagnosis doesn’t just rock your world, it rocks your spiritual world. Whatever sort of faith you profess, this is the time when you most need to get serious about your faith-tradition and tap its resources. The benefit of doing that goes way beyond merely “relaxing and coping.” Your house of worship, if you have one — church, synagogue, meeting-house, temple, whatever — is the place to wrestle with the big questions, with help and advice from wise guides who have the life-experience and faith-experience to help you sort these issues out. (If you don’t have a house of worship, I advise you to find one.) Remember, houses of worship were in the healing business long before hospitals even existed. Nowadays, they perform their acts of healing alongside of, and in sync with, medical science, which means you get the best of both worlds. Your house of worship is also a great place to connect with friends who can, indeed, “help you” (see number 8, above).

And now, ladies and gentlemen, the number one tip for dealing with a new lymphoma diagnosis...

1. Take a deep breath and go easy on yourself.
Know that right now, today, is just about the worst time in the whole progression of your disease, whatever the ultimate outcome. Diagnosis is hard. (I’m not talking about it from the doctor’s standpoint, but from yours.) It’s hard because, in running the race for a deeper, more all-encompassing health, now is the time when you have to go from zero to a hundred in a matter of feet, not miles. So, treat yourself right, especially at this time. In the eyes of your Creator — not to mention those of your family and friends, and even yourself — you’re worth it. You really are.

Go ahead, now, if you’d like, and check out the other items on the original list. Most of them are pretty good, and very much worthy of mention. But these are my Top Ten, and I’m sticking with ‘em.

Finally, take a look at this short video, which comes from the same Lymphoma Club website. It’s guaranteed to lift your spirits and give you hope.

April 2, 2013 – By Name

Episcopal Rector Gary Jones, a fellow cancer survivor, writes of a recent visit to his oncologist’s office that revealed to him a little bit of Easter.

Gary hadn’t been to the office for some time, and looked quite a bit different from when he had been going there regularly for his chemo treatments. His hair had come back, for one, but he also knew he looked and felt stronger and more fit.

He heard a nurse in an adjoining room call out his name, as the next patient to be seen.  “Gary Jones,” she said, in a deadpan, professional tone. But then, she recognized the name. “GARY JONES!” she cried, with laughter in her voice, and came running out to greet him with a smile.

Let’s have Gary continue the story himself:

“At first, she didn't recognize me, because she had never seen me with hair.  And besides, I had started weeping when I heard her calling my name.  I don’t know what happened to me; I just couldn’t help it.

But I recognized her.  She had cared for me for months.  She was my sister, my mother, my friend, my priest.  In the way that Jesus intended us to be for each other, I realized that she was my Lord, whom I recognized when she called my name.

Ubi caritas, Deus ibi est.  ‘Where there is love, God is there.’”

What a blessing it is to be recognized. And what a further blessing it is to be recognized by name! We honor one another when we welcome one another by name.

As Jesus honored Mary Magdalene, that Resurrection Day. And as he honors us, still.

Happy Easter Season!

(Gary is Rector of St. Stephen's Episcopal Church in Richmond, Virginia.)

March 29, 2013 – For Hmmm... the Bell Tolls

We’ve changed our Good Friday practice at the church, in the last year or so.  Faced with dwindling attendance at the noon-to-three service we used to offer in conjunction with several other churches in the community, we finally gave up on that service and decided to hold one at seven p.m. in the evening, instead. Tonight we’re offering what we expect will be a simple but moving Taizé service, backed by the Chancel Choir, who are in the process of learning what contemplative chants are all about. We’ll see if perhaps we can start a new local tradition.

Because noon-to-three comprises the biblical hours of the crucifixion, this year we simply opened the church for prayer during those hours. It’s our last nod to the Good Friday afternoon worship tradition. I wasn’t in the Sanctuary the whole time, but to the best of my knowledge no one took advantage of the opportunity.

That’s not a huge surprise. The contemplative tradition feels foreign to many Presbyterians. We tend to be a pragmatic bunch — not the sort of crowd who flock to an opportunity to gather for silent prayer.

Besides, to a culture that increasingly worships youth and health with a zeal bordering on idolatry, the figure of a tortured man gasping out his last breath on a cross seems the antithesis of any sort of victory.

In past years, at three p.m., we would conclude the community service by ringing the church bell thirty-three times – symbolic of the years of Jesus’ life. Although the Sanctuary was empty, I went in there today anyway, took hold of the bell rope, and slowly rang it. Thirty-three times feels like an eternity, when you space the rings out with a few seconds in between each one.

Outside, through the stained-glass, I could hear the sound of traffic and glimpse the wraithlike shadows of passing cars: people on their way to who knows where, very likely oblivious to the tradition that three o’clock was the hour of Jesus’ death.

If they noticed the sounding of the bell at all, would they realize what it was about?

I’ve always found the ringing of church bells to be significant in ways beyond words. In the year of undergraduate study I spent in Oxford, I used to look forward to the time each Sunday evening when all the change-bell ringers from the parish churches and college chapels, by common agreement, simultaneously practiced their trade. It was a glorious cacophony I will never forget, a mellifluous, rippling series of sound waves washing over that city of spires.

In years past, church bells functioned as many towns’ public-notification system. Like the Emergency Broadcast System that interrupts radio and TV programming every once in a while for a test, church bells fulfilled that function in years gone by. Public joys, civic celebrations, urgent alarms: all were heralded by the ringing of the steeple bell. In the era before loudspeakers and sirens, it was pretty much the loudest, most sonorous thing around.

That function has long since been supplanted by electronic systems of various kinds. Our local volunteer-firehouse and first-aid sirens are way louder than any church bell in town. In the days following Hurricane Sandy, the local Office of Emergency Management sent out daily information bulletins via telephone robocall. A viral message on Facebook, as we all know, can reach millions in the space of a few hours, if its recipients are keen to propagate it through their slacktivist mouse-clicks.

All that made me feel like a bit of a dinosaur, yanking on that bell-rope thirty-three times in an empty sanctuary, beside a street filled with drivers on their way to who-knows-what sort of Easter holiday sale. (I’ve actually seen a few ads for Good Friday sales in recent years. Now there’s a sacrilegious cluelessness that beggars the imagination!)

American hyper-individualism has been on the rise for generations. Has it reached its spiritual apogee in today’s bland acceptance of "Have It Your Way" McReligion as the national creed?

“Cast off the ties that bound
Our hearts in Christian love:
The fellowship of kindred minds:
To that we give the shove.”

(I just came up with that. Inspired, or what?)

Pulling on that bell rope, I had a odd mental association with the time of my cancer treatment. That’s such an isolating experience. When you mention to someone, “I’ve got cancer,” you can see from the look in their eyes — the oil-and-water mixture of sympathy and fear — that you’re all on your ownsome when it comes to empathy (unless, of course they happen to be survivors as well). As for other neighbors, if they’re at all adept emotionally, they’ll be quick to share sympathy: but truly entering into the experience is — understandably — beyond them.

The bell-tone reverberates, over the parade of preoccupied passersby.  What can we do but sound it anyway, hopeful that, somewhere, someone looks up and displays a half-smile of recognition?

February 21, 2013 – In Training

It continues to be a difficult for me to make timely entries on this blog, because of the ways my life has changed since Hurricane Sandy. Our home is intact, as is the church building, but our community is badly damaged. The whole focus of my ministry has changed, with a heavier emphasis on crisis intervention and pastoral care, as members of the congregation endure the frustration of insurance claims and FEMA grant applications.

The focus of the church’s mission has changed as well. We’ve recently been named a Volunteer Village by Presbyterian Disaster Assistance, housing groups of up to 36 volunteer recovery workers, one week at a time, in our Education Annex (which is across the driveway from the Manse).

I wish entries could be more frequent. It’s not for lack of things to write about. It’s simply about finding the time to sit down at the keyboard and do it.

I hope regular readers will bear with me. Things will get better eventually.

I’d like to reflect today on what cancer has taught me about dealing with a disaster. The two may seem at first to be unrelated — an extended period of cancer treatment, and a natural disaster bringing damage from winds and flooding — but in fact there are a great deal of similarities.

In both cases, there was a period of preparation. It was several months from the day Dr. Cheli handed me a medical test order with the words “Suspect lymphoma” written on it to the actual day when Dr. Lerner confirmed the G.P.’s suspicion was true. Sandy also came on kind of slow: there were several long days of anxiously monitoring the Weather Channel and wondering whether the storm track would intersect with our little piece of the Jersey Shore.

When each of those disasters struck, I was left reeling. The slowly-building sense of dread climaxed in a scenario that, if not exactly worst-case, was pretty far along that spectrum

After my diagnosis, my preeminent role in life became that of cancer patient. I threw myself into research, finding out as much about lymphoma as I could. The single most important items on my calendar became doctors’ appointments, blood tests, biopsies and medical scans.

After Sandy, my ministry became that of “disaster pastor,” focusing on needs more urgent and primal than the typical woes of middle-class suburbanites. At the church, our focus shifted to basic human needs like feeding people and providing temporary shelter. (We’d typically addressed those in the past by soliciting financial contributions for mission agencies; now, the needs were at our doorstep and our response person-to-person.) We handed out clean-up kits. I learned what brand of mold-remediation chemical to recommend. I became familiar with the intricacies of how to register for FEMA emergency aid, so I could urge our people not to miss the deadlines. When the local stores sold out of cardboard moving boxes and plastic storage bins — for people vacating flood-damaged homes to pack up their possessions), we became a distribution center for such items driven in by friends from elsewhere.

I never imagined my ministry would ever focus on problems like where to find plastic storage bins. Yet, when that appeared to be the work Christ was calling me to do, I did it.

In odd way, one I could never have predicted, my experience as a cancer survivor prepared me to become a hurricane survivor.

The disaster itself was over in a comparatively short time. In the case of my cancer diagnosis, it was a single afternoon in the doctor’s office, learning of my diagnosis. In the case of Sandy, it was the 24-hour period of high winds and torrential rain.

An intense period of confusion and numbing dread followed. In those days after my diagnosis, I grappled with the possibility that I could die soon. In the 5 or 6 days after Sandy, we were surrounded by a different kind of darkness, waiting for the power to come back on.

In the days after diagnosis, I felt very much alone, imagining nobody knew the troubles I was seeing — at least those relating to my role as pastor. In the days after Sandy, we were cut off from most forms of communication, except what sporadic text messages and internet access I could engineer on my iPhone.

Ever since Sandy, there has been far more important work to do than I could possibly accomplish. I’ve ruthlessly practiced to-do list triage, letting some urgent but less-important items go for a while — some of them for good..

Again, I went through something similar as I pursued cancer treatment in the winter and spring of 2006. Recovery became Job One. Every other task receded to a lower tier of priority.

Both experiences gave me a keener nose for trivia, giving me permission to jettison mere busy-work with few feelings of regret.

Resting up in those days between chemo treatments, I never imagined I was in training for a very different challenge. But I was.

The Lord works in mysterious ways. Turns out, cancer treatment bestowed some hard-to-discern spiritual gifts that prepared me for an extended period of hurricane recovery.

Who would’ve thought it?