Since my December 2, 2005 Non-Hodgkin Lymphoma diagnosis, I've been on a slow-motion journey of survivorship. Chemo wiped out my aggressive disease in May, 2006, but an indolent variety is still lurking. I had my thyroid removed due to papillary thyroid cancer in 2011, and was diagnosed with recurrent thyroid cancer in 2017. Join me for a survivor's reflections on life, death, faith, politics, the Bible and everything else.
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.
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.
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.
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?
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.”
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.)
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.
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.
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.
Reading the Gospel of Mark in preparation for today’s Baptism of the Lord sermon, I come across a rather jarring transition. It’s not actually in Mark 1:4-11 - today’s recommended passage from the Revised Common Lectionary - but it ought to be. The Lectionary editors took the coward’s way out and chopped the last two verses off Mark’s account of Jesus’ baptism.
They end their scripture reading with the heavenly voice saying of Jesus, “You are my Son, the beloved, with you I am well pleased.”
Now, isn’t that special? A heavenly benediction.
But that’s not where Mark ends his story. Two more verses come along, before he wraps it up:
“And the Spirit immediately drove him out into the wilderness. He was in the wilderness forty days, tempted by Satan; and he was with the wild beasts; and the angels waited on him.” [Mark 1:12-13]
Wow. So much for the warm, fuzzy feelings. So much for God’s benevolent benediction. Let the story spin out to its natural conclusion, and suddenly God doesn’t look like such a kind, benevolent deity. No sooner does God bless Jesus, the son, then God gives him a good kick in the pants (or the robe, as the case may be).
I am not making this up. It’s right there in the original Greek. Well, maybe it doesn’t say “kick,” but Mark says the Spirit “drove him out into the wilderness.” The Greek word means “to throw out, to drive out, to expel.” It’s the same verb Mark uses in chapter 11, verse 15, as he tells how Jesus “entered the temple and began to drive out those who were selling.”
Seems God is a Tough-Love sort of parent.
So, what is this wilderness, into which God is so determined to push Jesus? It is, in the Jewish imagination, the place where the deepest of spiritual encounters happen. Moses’ epiphany by the bush that’s burning, yet is not consumed... The giving of the 10 Commandments on Mount Horeb (or Mount Sinai, depending on which story you read)... Elijah hiding himself in a cleft of the rock, surviving earthquake, wind and fire to hear that “still, small voice” – or that “sound of sheer silence” – that tells him everything’s going to be all right... John the Baptist’s favored abode, where he clothes himself in animal skins and scarfs down locusts and wild honey for breakfast. All these take place in the wilderness.
At its very root, Jewish spirituality – and, therefore, Christian spirituality as well – is a desert spirituality. The Hebrew refugees who walk away from the fleshpots of Egypt, straight through the Red Sea waters, aren’t exactly going on vacation. God opens the way for them through the waters not so they can move to a gated community and take it easy, after all those years of hard labor building pyramids. No, God casts them into a daily struggle for survival, where they’ve got to learn the skills they need to live, or die trying.
With all that background, it’s hardly a surprise that, when God gives Jesus a blessing and sends him on his way, God sends him first into the wilderness. It’s Jesus’ experience of testing, of trial. It’s Messiah boot camp. The angels are there to serve him, but I expect their role is more like Marine Corps drill instructors than pillow-plumping flight attendants.
Cancer’s a wilderness experience. Its diagnosis can bring on disorientation, grief, depression, anger, anxiety, and a whole host of other grim responses.
The poet T.S. Eliot is aware that there are all sorts of deserts in life, not all of them having to do with sandy wastes and scorching sun. In his poem, “Choruses from the Rock,” Eliot has this to say:
You neglect and belittle the desert. The desert is not remote in southern tropics The desert is not only around the corner, The desert is squeezed in the tube-train next to you, The desert is in the heart of your brother. [T.S. Eliot, The Complete Poems and Plays, 1909-1950 (1952: Houghton Mifflin Harcourt), p. 98.]
Sometimes the desert is in the cancer survivor’s heart as well.
I find it significant that Jesus’ experience of being “driven out” into the wilderness takes place immediately after his baptism. What appears to us a jarring transition actually makes perfect sense.
Think of what baptism really means. We baptized a baby in church this morning. Cutest little girl you ever did see. The congregation loved the way she looked adoringly and trustingly up at my face as I washed her forehead with water carefully warmed so as to spare her any unnecessary discomfort. But that’s not the essence of baptism. It’s not the heirloom gown passed down in the family for generations, the party afterwards with the sherbet punch and finger-sandwiches and potato salad. No, baptism is made of sterner stuff.
As practiced by the first generation of Christians – before there was a second generation to grow up in the faith – baptism often took place standing waist-deep in a swift-flowing river, and the person performing the baptism pushed you down under the water and held you there, just long enough that you felt short of breath and feared you might drown. Then, just as all seemed lost, you were lifted up into fresh, breathable air, gasping and sputtering, thoroughly relieved you were not going to die at all, that day.
When parents bring infants for baptism, they do it because they wish the very best for their children. The very last thing on their minds is a life filled with pain and suffering. As parents, their natural inclination is to shield and protect their children from anything so harsh and threatening as that.
But, do you know what? Life is filled with pain and suffering. Like cancer. As it says in the book of Job, “human beings are born to trouble just as sparks fly upward” [5:7]. Baptism offers no guarantee whatsoever that the life ahead of this little child, or any other, is going to be more comfortable, or more protected, than the life of an unbaptized baby.
What we in the church offer children, in baptism – and in the years of Christian Education that follow – is not so much a soft, cuddly blanket as a wilderness survival kit. For surely, this human life of ours can seem at times very much like a wilderness sojourn. To get through it intact, we need to be trained in the ways of the woods, and know where to look to find food and shelter.
Henry David Thoreau, who retreated to his famous cabin beside Walden Pond because he “wished to live deliberately, to front only the essential facts of life,” speaks of something he calls “the tonic of wildness.” A tonic, of course – in nineteenth-century parlance – is a medicine, or more like what we’d call today a nutritional supplement:
“We need the tonic of wildness, to wade sometimes in marshes where the bittern and the meadow-hen lurk, and hear the booming of the snipe; to smell the whispering sedge where only the wilder and more solitary fowl builds her nest, and the mink crawls with its belly close to the ground. We can never have enough of nature. We must be refreshed by the sight of inexhaustible vigor, vast and titanic features, the sea-coast with its wrecks, the wilderness with its living and its decaying trees, the thunder cloud, and the rain which lasts weeks and produces freshets. We need to witness our own limits transgressed, and some life pasturing freely where we never wander.” [Walden (Houghton Mifflin, 1854), p. 257.]
The poet Wendell Berry expresses a similar vision of wild places in these lovely lines, in a poem called “The Peace of Wild Things”:
When despair for the world grows in me and I wake in the night at the least sound in fear of what my life and my children’s lives may be, I go and lie down where the wood drake rests in his beauty on the water, and the great heron feeds. I come into the peace of wild things who do not tax their lives with forethought of grief. I come into the presence of still water. And I feel above me the day-blind stars waiting with their light. For a time I rest in the grace of the world, and am free. [The Selected Poems of Wendell Berry (ReadHowYouWant.com, 2010), p. 36.]
I like to think that, when the Spirit drove Jesus into the wilderness, it was – at least in part – so he could have experiences such as these. Yes, Jesus’ sojourn in the wilderness is traditionally depicted as a time of temptation, a struggle with Satan. Yet, I also think it had to include its moments of peace and stillness, of contemplation and wonder, of living close to the earth and close to God.
I find it comforting, as I reflect on my cancer experience, to recall the therapeutic value of my baptism. As with Jesus’ own trip to the river, it was followed eventually by an experience of being driven into the wilderness. The wilderness is a fearsome place, to be sure. But it can also be a fearsomely beautiful place.
A little op-ed article in our local newspaper was written by an artist, Shari Epstein, who happens to be a breast-cancer survivor. Shari reports how some of the paintings she created during her chemotherapy and subsequent radiation treatments took on a rather dark and ominous tone.
She also observes how her experience as a cancer survivor has changed the way she looks at time:
“I am a survivor because having cancer reminds us just how fragile our lives are. For me, it changed the immediacy of wanting to accomplish my goals. It changed my appreciation of the joys in my life. It left me intolerant of wasting my time. Cancer makes time a new precious commodity. Enjoy it, embrace it and hope you have lots of it.”
I can relate to what Shari says. Since getting cancer, I’ve probably been working harder than ever before, particularly on writing projects. I have more of an awareness, now, that my time on this earth is limited. I also feel some of that same impatience she reports with experiences that seem to be time-wasters.
I’m more concerned than before with leaving my mark on the world, with accomplishing some things that will set me apart from the crowd. Previously, I would have characterized some of those daydreams as hopes or desires. Now, they’re closer to goals.
It’s paradoxical that I’m doing this, because of another learning I’ve had as a result of my cancer experience: that cancer just is, that it falls upon certain lives like the proverbial rain that falls on the just and the unjust. If the R-CHOP had made no dent in my lymphoma, if it had snatched me from this world at age 50, I wouldn’t have blamed myself for that. I might have been angry, or frustrated, or sad. But, I wouldn’t have said it was my fault.
Now, with my lazy, indolent cancer hanging back and not doing much of anything for the past six years, I’m inclined to blame myself for any aspect of my life over which I do have control, but that I haven’t turned to the goal of accomplishing something noteworthy.
Some cancer survivors speak of how their experience with the disease has taught them to stop and smell the flowers. Not me. I’m not much interested in doing that unless I can pick and press some of the flowers and use them to make something worthwhile.
I now know, deep in my gut, that time is fleeting.
Here’s a new blog that’s worth checking in on from time to time. Parenting With Cancer is the brainchild of a New Jersey NHL survivor, Jen Singer. Her two sons are now in junior high. At the time she was undergoing chemotherapy and losing her hair, they were in elementary school.
A cancer diagnosis is devastating at any age, but for parents of young kids it’s especially hard. What do you tell them? How much will they understand? How to cut back on day-to-day responsibilities and concentrate on healing, when there are young lives depending on you 24/7 for care and nurture?
Our son Ben was in college and our daughter Ania was in high school when I was diagnosed. It was tough enough figuring out how to break the news to them, at that comparatively older age. I can only imagine what it must have been like for Jen, and others in similar circumstances, to tell their much-younger children they’d soon be seeing their mother without any hair.
Kids may not comprehend all the medical details, but at every age they do tend to pick up on the general emotional tenor of the household. I wouldn’t advise parents in Jen’s situation to try to hide the news from their young children. Better to tell them a little, in as non-anxious a way as you can, then wait for them to tell you if they want to know more. Now, here’s the tricky part. Young kids may not be equipped to ask you, in so many words, to tell them more, but even if they aren’t, kids will generally send non-verbal messages that they’re either satisfied or unsatisfied with the briefing you’ve just given them.
I also think it’s OK to get emotional in front of them, if that’s what it takes to be honest and real. You can’t use a young child as your therapist, of course, but for them to see mommy or daddy cry or express anger – and thereby learn that the sky doesn’t fall when that happens – is not a bad thing. Just remember, strength comes in many different packages. Clint Eastwood’s patented squinty-eyed, stone-faced, curled-lip impassivity is only one way of showing it (and probably not the best, in such circumstances). Just think of what a learning it could be for kids to watch their parents wrestle with how to adapt to a really tough piece of news, and come out at the other end of the struggle with an accommodation to the new normal.
Jen talks of listening to a priest’s homily about how wonderful heaven is, a message that she, as a parent and cancer survivor, was not ready to hear. In light of the glories of heaven, the priest was saying, how do we account for human fears of death, except as a stubborn fear of the unknown? Jen’s response:
“Not me. I have a fear of the known. And here’s what I know: If I die and go to Heaven today, I will not be here to raise my children — something I came awfully close to four years ago when doctors found a tumor the size of a softball in my chest.
I wanted to interrupt the priest’s homily, to tell him and the entire congregation that while Heaven sure sounds lovely, I have responsibilities here on earth — two of them — and they aren’t done being raised.”
She also admits to feeling a bit of survivor’s guilt, as she attends the funeral of a neighbor (another young mother), who died of ovarian cancer:
“As I snaked my way through the crowd, hugging person after person that I recognized from town, I realized, This could have been my funeral. And suddenly, I stopped walking. I stopped hugging people. I stopped looking at photos of my neighbor on vacation, on Christmas, at the school where our sons were in kindergarten together.
I stopped and thought about my own kids four years ago, when I was just two months from what could have been my own funeral.
And yet my neighbor is gone and I'm here.”
A cookie-cutter approach to coping with cancer is impossible. We’re all of us different, in one way or another, so we’ve got to chart our own path.
Still, Jen Singer describes herself as a “cancer sherpa.” Like those legendary Himalayan guides, she’s offering her mountain-climbing savvy to others setting out on the journey for a first time. For cancer survivors with young kids, her blog is well worth bookmarking.
Came across this little gem of an article today, in the online edition of Coping With Cancer magazine. It’s by Anne Lawton, an oncology nurse, and it’s about hope.
Hope, she's come to realize, is “the only word that matters” in her business.
Anne’s learned that, from the patients’ standpoint, the nature of hope changes over time. At first:
“People hope their doctor is good. They hope they make it through surgery, and they hope their cancer is treatable. They hope they can tolerate the chemotherapy.”
Later on in the cancer journey, many find themselves hoping for different things:
“They hope for a cure. They hope for a nice, full head of hair, eyelashes, and eyebrows. They hope the neuropathy and the other side effects go away. It's no longer just survival they hope for; they want their life back. They have a lot to do, and they hope the cancer never comes back.”
And if it should happen that the cancer does come back? Hope changes yet again:
“They hope for a life worth living, with few cancer-related side effects. They hope to live long enough for graduations, grandchildren, weddings, or that trip of a lifetime. They hope to complete their "bucket list.”
Finally, in some cases – though Anne doesn’t go there – when patients opt for hospice care, the hope is for freedom from pain, a clear mind, the opportunity to say farewell to loved ones and to know they’ll be provided for. A good death, in other words. When the time is right, no apologies are necessary for hoping for that.
Viewing hope as a continuum, can we really say it’s the same hope at the end of such a journey as at the beginning? I’d say yes, it is – although the hope has changed and matured. It’s grown, just as the patient has grown all through this troubling, painful, emotionally-taxing – and, yes, sometimes even spiritually-uplifting – journey.
1 Peter 1:3 celebrates how God “has given us a new birth into a living hope through the resurrection of Jesus Christ from the dead.”Living hope. I think that ol’ apostle was onto something.
By God’s generous grace, hope is alive. It grows and changes as we grow and change. Hallelujah!
This Easter, I preached on the topic, “This Is the Life.” While, for many, it’s a phrase that conjures visions of shady cabanas on tropical beaches, shrimp cocktail and umbrella drinks close at hand, I was thinking about something different.
And no, I wasn’t thinking about what this guy means by the phrase, either:
“This is the life” is Jesus’ promise to his disciples in John 10:10, as he proclaims, “I came that they may have life, and have it abundantly.” It’s a promise they wouldn’t begin to understand until after the resurrection.
This whole matter of abundant life takes on a different cast when that life includes cancer. What does it mean to “have life abundantly” when that life, for a cancer survivor, includes a low-level sense of foreboding that’s always lurking somewhere?
I think Matthew’s account of the resurrection supplies an answer. It employs a curious turn of phrase, describing Mary Magdalene and “the other Mary” (probably Jesus’ mother), as they rush from the tomb, having heard the angel tell them Jesus has been raised from the dead. Matthew says, “they left the tomb quickly with fear and great joy...”
Whuzzat? With fear? And great joy? Sounds like an oxymoron.
No, it’s no oxymoron. Our emotions are seldom simple and elemental. They’re often mixed.
Actually, there are times in life when fear and joy do coexist. Try to imagine the first time you fell in love, and realized that person you loved felt the same way about you. Did you ever feel more alive than in that moment?
And wasn’t it also true that, having asked that special person (or having been asked) to go out on a date, and having heard that person say yes (or having said yes yourself), the thought suddenly occurred to you that you would have to actually participate in said date, and you would somehow have to avoid making an idiot of yourself? Fear and great joy!
Or, think about the most significant graduation ceremony of your life, that highest level of education you’ve completed. If you were able to attend such a ceremony, recall the joy of accomplishment you felt that day, in cap and gown, looking around at the grinning faces of all your classmates. Remember, too, the other thought that came to you at that moment: “What am I going to do tomorrow?” Fear and great joy!
Brides and grooms on their wedding day, first-time parents driving that baby home from the hospital – on these and many other occasions in life, fear and joy coexist. Not without some tension between them, perhaps, but there it is. This is the life.
The two Marys were likely feeling something similar, because the first thing the risen Jesus says to them is “Do not be afraid.”
This has nothing to do with whether or not they may happen to disbelieve what they’re seeing, or whether or not they suspect it may be some sort of ghostly apparition, some wraith vomited up from dark places to bedevil them. No, I think they realize who it is, and can at least grasp the bare outlines of the paradigm-busting wonder that’s taken place. I think the two Marys are afraid because they realize what the resurrection is going to mean for their lives.
Surely these wise women realize that, if they continue on as Jesus’ followers, and go tell the other disciples the good news they’ve just heard and seen, they’re going to unleash into the world a powerful force that there will be no stopping. From this day onward, they’re going to be riding a mighty wave that will propel them onward with terrific force – and at times that position on the crest of the wave will be a dangerous place to be.
Yes, of course they’re going to do it, of course they’re going to bring the good news to their companions. But their fear and their joy are intermingled.
This is the life. This is the new life God has given them. Yes, perhaps they recalled hearing Jesus say he’d come that they might have life, and have it abundantly, but until this moment those had been nothing more than inspiring words, a rhetorical flourish. How could they possibly have known that new life would come to them through the nail-pierced hands that now rest on each of their heads, and through the nail-scarred feet they are even now washing with their tears?
The Danish theologian Søren Kierkegaard once described this aspect of the Christian life using a very vivid image. He said that sharing the Christian faith with others is like handing them an extremely sharp knife.
A sharp knife is a useful tool. The greatest chefs, in fact, take meticulous care of their knives, sometimes even packing them into special carrying cases and bringing them home at night, so no damage will come to them. No one, Kierkegaard goes on, would think of handing a sharp knife to another person as one would hand over a bouquet of flowers. It’s just not done.
One of the first things we teach kids, in our church’s Cub Scout Pack and Boy Scout Troop, is how to safely hand a knife to another person. The boys don’t earn their “Totin’ Chip” – the special wallet card that allows them to carry a pocketknife – until they learn how to hand an open knife to a fellow Scout handle-first, and not let go of it until the other person says, “Thank you” – indicating he’s got it safely in hand. That’s because a knife is a useful implement, but it’s also dangerous. You’ve got to have a healthy fear of knives before you can use them safely.
Faith is just that sort of tool for living life as a cancer survivor. Most of us aren’t going to be cured, physically, by our faith. For whatever reason, God doles out complete spiritual healing only rarely, and according to no logic we can understand. Yet, if we’ve learned how to take this elegant tool in hand and use it safely - preventing it from slipping and causing further injury - we’ll find ourselves much better-equipped for living through days and years of remission and relapse, of tests and treatments.
Christian faith doesn’t put an end to fear. It does, however, take the natural, human fears we all have and puts them in perspective. Without the inner peace that comes of faith – which we Christians describe as knowing the risen Christ – the ordinary fears of human life can rage out of control, wreaking havoc in our lives, and in the lives of those we love.
The crucial difference comes from the other part of the equation: the “great joy” that counterbalances our very human fears. We can still seek it, even in the midst of cancer. Even a cancer-burdened life is still life, and Christ has promised that, in him, we can live abundantly.
A New York Times article published on Christmas Day reports the good news that sanity has finally prevailed in the halls of government, as further regulations connected with the landmark healthcare-reform legislation enable Medicare funding for advanced end-of-life planning.
This news comes - to my mind, anyway - with a particular sense of relief. Opponents of healthcare reform have cynically and cruelly exploited dying people for their own political gain, by raising up the myth of government "death panels." According to that improbable scenario, government bureaucrats would have played a role akin to that of the infamous Dr. Mengele at the Auschwitz concentration camp (he was the camp physician who decided, with a wave of his baton, which new prisoners would go to the barracks and which would be sent directly to the gas chambers).
What the original legislation, in fact, provided was money to pay for annual doctor's office visits - for those critically-ill patients who want them - at which the various options for end-of-life care would be explained. One significant option is hospice - the part of the medical community in which Claire works, providing bereavement counseling and support.
The recent news is that the Obama administration has quietly restored this funding - not through legislation this time, but through regulation-writing (it had been in the original bill, but was pulled out in reaction to the "death panel" kerfuffle).
I'm especially glad to see this funding restored because of situations I've seen arise time and again in my ministry (and which Claire sees much more often in hers). Far too often, patients avoid having the hospice discussion with their doctors and family members until death is imminent and it's too late for them to derive much benefit from hospice care. When patients' time on the program is measured in hours rather than days, there's not a lot the hospice team can do for them.
Hospice care is not intended to be delivered in such an accelerated time frame. Yes, it's designed for patients who are expected to live fewer than six months, but a lot can be accomplished in that period of time, improving significantly patients' comfort and quality of life.
Talking about hospice is NOT giving up on patients. Quite the contrary, it's about empowering seriously ill patients to live the remaining portion of their lives as they wish. If patients and their families decide to continue aggressive treatment, so be it. If they opt, instead, to go home to a hospital bed in the living room, with advanced pain control and unlimited visits from their grandchildren, then that's their decision and it ought to be respected.
Irrational fear of "death panels" has kept people off hospice care who should have been receiving it much sooner - and would very much have wanted it, had they understood the patient-centered philosophy behind it. This restored funding will allow doctors to plan significant time for consultations that will equip patients and family members to make their own, carefully considered decisions about backing off from aggressive treatment and focusing more on palliative care.
Time and again, I've heard bereaved family members say they wish their loved one had signed onto hospice earlier, but they just didn't have a sense of what hospice is all about until it was nearly too late.
Chalk this one up as a triumph for patients' rights: to make their own, well-informed healthcare choices.
