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.
“A Food and Drug Administration panel opened a new era in medicine on Wednesday, unanimously recommending that the agency approve the first treatment that genetically alters a patient’s own cells to fight leukemia, transforming them into what scientists call ‘a living drug’ that powerfully bolsters the immune system to shut down the disease.
If the F.D.A. accepts the recommendation, which is likely, the treatment will be the first gene therapy to reach the market. Others are expected...”
This particular treatment focuses on an uncommon form of childhood leukemia, and is earmarked for the 15% of patients who don’t respond to other treatments. Here’s how it works:
“The treatment requires removing millions of a patient’s T-cells — a type of white blood cell — and genetically engineering them to kill cancer cells. The technique employs a disabled form of H.I.V., the virus that causes AIDS, to carry new genetic material into the T-cells to reprogram them. The process turbocharges the T-cells to attack B-cells, a normal part of the immune system that turn malignant in leukemia. The T-cells home in on a protein called CD-19 that is found on the surface of most B-cells.
The altered T-cells — called chimeric antigen receptor cells — are then dripped back into the patient’s veins, where they multiply and start fighting the cancer. Dr. Carl H. June, a leader of the University of Pennsylvania team that developed the treatment, calls the turbocharged cells ‘serial killers.’ A single one can destroy up to 100,000 cancer cells.”
It's fascinating to me that the new treatment uses a stripped-down form of the HIV virus as a pack-mule to carry the re-engineered genetic material back into the patient's cells. There's a kind of poetic justice in using one killer to fight another.
Although the article refers to this treatment as a “drug,” it stretches the usual definition of the word. It’s part drug, part treatment protocol.
Whatever it is, I’m glad to see it’s ready for prime time. It can’t be long before other, similar treatments for a variety of cancers will follow.
Anyone who’s read widely about religion in America knows the name of Phyllis Tickle. As the longtime religion editor for Publisher’s Weekly, she’s had a great influence on contemporary religious writing. In recent years, she’s garnered acclaim for several books of her own, most notably The Great Emergence. These have sought to make some sense of the rapidly-changing American religious landscape.
She hasn’t written much about her own faith journey, though — or, at least, nothing I’ve seen in print. She’s been diagnosed, now, with Stage 4 lung cancer and has been told that her condition is not curable.
Maybe that diagnosis has freed her to share more deeply about her inner life. In a Religion News Service interview published today (“Author Phyllis Tickle faces death just as she enjoyed life: ‘The dying is my next career’”), she shares the details of a near-death experience she had as a young woman of 21. She’d been given an experimental drug to prevent a miscarriage, and things went south after that:
In the middle of the night, she stopped breathing; her husband, a medical student at the time, was able to revive her long enough to get her to the hospital.
“Mine was a classic near-death. So, not much to say,” she begins. “I was dead.”
“I was like a gargoyle up in the corner of the hospital room,” she continues. “And I remember to this day looking down and watching Sam beat on me again and screaming for the nurses, and the nurses coming with the machines and the whole nine yards. And then the ceiling opened and I just went out the corner and into a tunnel, which was grass all the way around. Ceiling, sides, the whole thing.
“And I went to the end of the tunnel to this incredible — people call it ‘the light.’ I guess that’s as good a name as any. But an incredible peace, a reality, unity, whatever. The voice, which was fortunately speaking in English” — she laughs again — “said, ‘Do you want to come?’ And I heard myself saying, ‘No, I want to go back and have his baby,’ meaning Sam.”
She recalls that she turned around and went back down through the hole in the ceiling and into her body.
Her analysis, all these years later?
“You’re never afraid of death after that,” she told the interviewer. “I’m sorry. You could work at it but you’d just never be afraid of it. … You don’t invite that kind of thing. It’s a gift. It’s not like you can prepare for it or anything. It’s part of the working material you’re given.”
Such experiences are truly a gift — both for those who have them and for those who hear about them.
OK, this is something of a grim subject. But it need not be.
The subject is conversations about dying and end-of-life care. I’m writing, now, more as a pastor than as a cancer survivor reflecting on my own situation. (Thankfully, my health has been good, and there’s been no sign of recurring lymphoma.) My wife, Claire, is a minister who’s worked for more than 15 years in hospice ministry, so this is a subject that does come up at the dinner table from time to time.
I’ve seen a number of moving news articles on this subject recently.
Atul Gawande has written in the New York Times, summarizing the goal of palliative care in hospice programs as providing patients with “the best possible day.” Hospice has got that wonderful here-and-now focus. Not tomorrow. Not next week. But today. Carpe diem.
Nina Bernstein has written in that same newspaper about a situation in which offering a patient the best possible day seemed to be the last thing on medical caregivers’ minds. She tells the story of Maureen Stefanides, who worked without letup to find a way to get her dying father, Joseph Andrey, out of a nursing home and back to her home so he could die with dignity. Tragically, a web of competing health and financial regulations — coupled with a shortage of home-care nurses and aides (a singularly low-salary occupation) in high-rolling New York City — made that impossible. As it was, the poor man was simply falling apart with multiple age-related issues, and no one seemed willing to stop the aggressive-treatment train. Stopping it in his case was all the more difficult because the nursing home stood to lose profits if they discharged him to home hospice care. (“The nursing home collect[ed] $682.48 a day from Medicare, about five times the cost of a day of home care.”) There’s really got to be a better way to run a healthcare system.
In Ms. Bernstein’s case, talking about hospice care was not the issue, but for many families it’s the proverbial elephant in the living room. Family members tiptoe around the subject, thinking it’s important to keep a relentlessly positive attitude, fearing that if their loved one knew he or she were “terminal,” the terminus would arrive all the sooner. In reality, the sick person is likely very aware of the imminent end, and may have strong feelings about what sort of end-of-life care is the best. Yet, on their side, seriously-ill patients sometimes hesitate to raise the subject with their families, out of deference to their feelings. Such “after you, Alphonse” hesitation often leads to an unwanted final few days in a medically-invasive intensive-care unit.
An article about President Obama’s recent signing of the Impact Act, which will lead to greater Federal scrutiny of hospice programs, observes that “The median length of stay for hospice patients in recent years has been fewer than 20 days — probably much too short, in many cases — so a hospice that provides six months’ care for half its patients is a true outlier.” Claire has shared, from her experience in hospice chaplaincy and bereavement support, that a shockingly large number of patients in her program live less than 48 hours after their admission to the program. This has nothing to do with the quality of care; it's just that so many patients aren't even recommended for hospice until they're just days (sometimes hours) from the end. I’m told hospice team members have a name for that sort of patient: “on and gones” - as in "on the program and gone." In some cases, the program barely has an opportunity to provide any of their excellent services, because the patient doesn’t live long enough to receive them.
The heightened Federal regulation is important, because there’s been a proliferation of for-profit hospice programs, taking advantage of Medicare payment policies that can make palliative care financially lucrative for the providers, especially if they can pick and choose which cases they accept. Some of these for-profit programs are heavy on the marketing and light on the services provided. Claire works for a non-profit program associated with our local hospital system. They have a lower profile but provide better, more comprehensive services than some of the for-profits.
A few years ago, Sarah Palin got the whole nation into a fit of agita over her made-up “death panels” campaign issue. I think this is one of the most reprehensible things any politician has ever done, because the government’s failure to work the end-of-life conversation into Medicare payment regulations has led to a great many patients missing out on hospice care they would have very much wanted. Political opportunism at its worst. For shame.
Too many patients today are paying a heavy cost for her death-panels diversion.
We’ve simply got to find a better way, as a society, to talk about this particular elephant in the living room.
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.
There are more of us cancer survivors all the time.
According to a June 14, 2012 Reuters news story (“Number of US cancer survivors to increase by a third by 2022"): “The number of Americans living with cancer will increase by nearly a third to almost 18 million by 2022, according to a report released on Thursday by the American Cancer Society and the National Cancer Institute.
Researchers found that even though the incidence rates of cancer are
decreasing, the number of cancer survivors is on the rise due to a
growing - and aging - U.S. population. The incidence of cancer rises
dramatically with age.
The report concluded that the expanding population of cancer survivors
makes it increasingly important that the medical community understand
their unique healthcare needs.”
While these statistics may sound at first like bad news, they’re
actually not. Two very positive factors influence these numbers.
First, those of us who do have cancer are surviving longer, thanks to
ever-more-effective treatments. The interval between diagnosis and
death is growing greater all the time. For some of us, even though
we’ve been diagnosed with cancer, we’re not dying from it, but from
other causes.
Second, people are living longer in general. Because the chances of
contracting cancer go up with each year of our lives, that means there
are people being diagnosed with cancer today who, in earlier
generations, would never have reached that point, because they would
have been carried off by some other ailment that’s more likely to be
curable today.
Many cancers are a sort of genetic time bomb. Certain genes are
programmed to go haywire when a person hits a certain age. If more of
us are living to that age (whatever it may be) than in earlier
generations, that translates into more cancers.
The emphasis in all these statistics is on the word “living.” More and more of us are living with cancer, not dying from it.
That means survivor issues are going to loom larger in importance for
the medical community. The combination of more-survivable cancers and
longer lifespans in general means a great many of us are journeying
through uncharted territory. Never before have there been so many of us
asking what it means to be a cancer survivor. Never before have there
been more of us living with cancer.
We’re living. We’re surviving. We’re people with cancer. Hear us roar!
If ever there were a good time to be a lymphoma patient (not that I think there ever is), it’s now. Every annual meeting of ASCO (the American Society of Clinical Oncologists) seems to offer news of some new variation on treatment protocols that promises a heightened survival rate.
The latest one for follicular lymphoma – as I learn today from an e-mail bulletin sent around by the Leukemia and Lymphoma Society – is a new combination of Rituxan (the monoclonal antibody drug I received along with my CHOP chemotherapy) and an old drug that’s been around for a while, Revlimid:
“John Leonard, M.D., of Weill Medical College of Cornell University presented promising results for a Phase III trial of a new Rituxan combination to treat patients with follicular lymphoma (FL). Dr. Leonard reported that using Revlimid plus Rituxan very much increased overall response rates for relapsed FL patients (73% in this trial vs. 50% for Rituxan only in previous trials). A Phase II trial of this combination for newly diagnosed FL patients is already underway.”
Revlimid, its manufacturers admit on their website, is an “analogue” of Thalidomide – one of the scariest names out there in the field of pharmacology. OK, let’s be real: Revlimid is Thalidomide, but with the drug’s notorious history I can understand why they’d rename it. I still remember, as a kid, paging through an issue of LIFE magazine with its chilling, black-and-white photos of the children born with horrible birth defects as a result of that drug. From 1957 to 1961, Thalidomide was commonly given to expectant mothers to prevent morning sickness. No one knew that many of the children born to these unfortunate mothers would have no arms – other than small, vestigial appendages that could in no way substitute for the real thing. Very sad. (Not to mention, a gold mine for the trial lawyers.)
As a cancer drug, Revlimid is evidently effective: and, as long as the patient isn’t an expectant mother, it’s supposed to be safe (or, at least, as safe as most other cancer drugs, all of which have a certain risk to them). Lots of chemo drugs come with a warning label saying they’re not for expectant mothers, or may cause sterility. Doctors have raised that sort of warning with me, at various times as I prepared for treatment, but when I tell them Claire and I are not only done having children, but that I’ve had a vasectomy, it lays those concerns to rest pretty quickly.
It’s not cheap, though: Wikipedia.com reports that Revlimid (medical name, Lenalidomide) costs an average of $163,381 per year. Ouch.
Dr. Leonard’s work is only a Phase I trial, with Phase II now underway, so this drug cocktail is a long way from being ready for prime time. I’m glad to know someone’s out there, though, with the medical-research equivalent of a cocktail shaker, trying out new drug combinations. From early indications, chances are that this one may be in production in several years’ time, so it's one more reason to be hopeful, should the day come when I need treatment again.
Just a brief post today, to share something remarkable I just saw online. National Public Radio’s “Morning Edition” show featured a story about a 12-year-old cancer survivor, Grant Coursey. After multiple surgeries for neuroblastoma, a tumor wrapped around his spinal cord that was impeding his breathing, he’s considered cancer-free.
Grant was very young when he was receiving his treatment, but the experience has evidently made a big impression on him. I’ve written upstream about how cancer monkeys with the stages of human development, often giving survivors perspectives on life that are more commonly held by much older people. This certainly seems true of young Grant, as this exchange with his mother, Jennifer, demonstrates:
"I always kind of hoped that you didn't really remember much," Jennifer says, "but the scary stuff really stuck with you."
"Yeah. You know, I've got big scars all over my back from getting cut open," Grant says. "Whenever that kind of starts to twinge a little bit, like if I touch it wrong or something like that, it just kind of reminds me I'm lucky."
"Yeah," Jennifer says.
"You know, life is really good," Grant says. "And there's this saying that says if you've been close to death, you understand life more. And sometimes I think of that, and I think, you know, if this had never happened to me, I never would have understood how much life means, kinda. You know? What if I had died? I'd never have this amazing life."
"That's right," his mother says.
"That's crazy to think about," Grant says.
"It is crazy to think about," Jennifer says. "Well, Grant, I'm sure glad you got well."
"Yeah."
"I sure love you. And I hope you're picking up that I'm so proud of you," Jennifer says. "I'm so proud of you."
"I pick that up a lot, honestly," Grant says.
"Good."
Cancer’s a stern teacher, but an effective one. Blessings to Grant, and to so many other kids like him who have had this tough but life-changing experience!
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.
Back in October, 2007 and again in June, 2009, I reported on the research success of an idiopathic vaccine treatment for indolent NHL called BiovaxID. I’ve been following the progress of this research with particular interest ever since, because I was briefly considered for a clinical trial of it when I was first diagnosed. While that clinical trial proved not to be an option for me (after I was diagnosed with an aggressive from of NHL, besides the indolent form the researchers were targeting), it’s one of the newer treatments that continues to hold promise. By the time my indolent NHL-dragon awakes from slumber and again rears its ugly head, BiovaxID will likely be one of the arrows in the quiver.
A current financial news article reports that BiovaxID is just about ready for prime time. Biovest, the company that holds the patent, has just formally petitioned the FDA for regulatory approval.
The wheels of government bureaucracy grind exceeding slow, but this is progress, all the same.
It’s a little odd to read about it in an internet investors’ newsletter called Market Watch. Articles like this one are meant to help aspiring venture capitalists see what's coming from afar, so they can decide whether shares of Biovest’s stock are an attractive place to park some of their simoleons.
In the world of Big Pharma, though, that’s the way it works. It’s not just altruism that keeps those researchers peering into their microscopes and hovering their eyedroppers over petri dishes. If you can “build a better mousetrap” by curing or pushing back some dread disease, the investment world will beat the proverbial path to your door. That means some big, fat paychecks for the people in the lab coats, and even fatter ones for those risk-taking financiers who advanced them the money to do what they do best.
BiovaxID is the ultimate designer drug, in that it’s custom-manufactured for each patient. Starting with some biopsied tissue, the drug company goes back to the lab and cultures a special version of the drug that will be most effective for that person’s body chemistry.
This feature of the treatment stretches the meaning of the word “drug.” You’ll never be able to amble down to your local pharmacy and pick up a childproof bottle of the stuff. Each person’s formula is one-of-a-kind.
What BiovaxID will eventually cost, I have no idea. It sure won’t be cheap. It is to ordinary drugs as a Saville Row bespoke tailor is to K-Mart.
Whatever it takes to get the researchers as far down the road as they’ve gone on this one, I’m glad they have.
Anyone with a personal interest in cancer treatment will want to read this Los Angeles Times article, about a very significant research breakthrough by scientists at the University of Pennsylvania.
It seems they’ve found a way to modify a patient’s own T-cells, so that, when injected back into the patient’s bloodstream, they destroy a variety of different types of cancer cells. Each re-engineered T-cell packs a wallop: it can kill over 1,000 cancer cells. In the patients who were treated with this experimental regimen, the T-cells had a life of over 3 months, and the cancer has not recurred a year later.
This is as close as scientists can reasonably expect to get to a “natural” cancer treatment. It’s a way to, essentially, educate a patient’s own immune system to do what it should have been doing with those cancer cells in the first place.
“This is a huge accomplishment - huge,” says the Dean of Harvard Medical School. Considering that Harvard is essentially a competitor of Penn in seeking this sort of research breakthrough, this is high praise.
This is the sort of news that gives hope to those of us living with cancer. This is just early research, of course, and “not ready for prime time” as an off-the-shelf treatment option, but it holds great promise for the future.
Way to go, University of Pennsylvania researchers!
Saw a real gem of an entry on Dr. Wendy Harpham’s On Healthy Survivorship blog (June 2). Exploring the subject of hope, Wendy quotes Rabbi Naomi Levy, whose book, Hope Will Find You: My Search for the Wisdom to Stop Waiting and Start Living, chronicles her journey towards a deeper spirituality after her 5-year-old daughter, Noa, was diagnosed with a rare, fatal and degenerative neurological disease.
In a magazine interview, Rabbi Levy shares an anecdote from the time when Noa was preparing for her bat mitzvah, that rite of passage for girls crossing into the teenage years. With Noa’s learning disabilities, her mother didn’t quite know what she was capable of absorbing, when it came to studying the scriptures.
The Rabbi asked her young daughter what a particular Bible passage meant to her, and she replied, “‘Mom, I think what it means to me is, if you don’t like your life and things are not going well, if you try very hard you can find hope.’ Then she stopped and corrected herself. She said, ‘No…hope will find you.’”
Her mother reflects: “Noa was saying…that hope would find me, that hope was searching for us and that goodness and mercy and all these lessons are actually seeking us, tracking us down, and too often we are running away from them. We’re thinking it’s a struggle, but in reality what we can do is relax a bit and let all these blessings in, because they are all around us.”
Relax a bit.
Relax? Are you serious? When the bad news is coming so fast and furious?
Yes. No one said it would be easy, but there’s simply no other way.
In the medieval spiritual classic, The Imitation of Christ, Thomas à Kempis teaches: “To sum up, dear friend of Mine, unclench your fists, and let everything fly out of your hands. Clean yourself up nicely and stay faithful to your Creator.”
So much of spirituality is about letting go. And the first and greatest thing our desperate fingers are clasping is the illusion that we are in control. For a few seasons of life, most of us can carry off that charade to some degree, but eventually reality catches up. With a bang. Some hard piece of news may first turn our minds in that direction. Perhaps it’s a cancer diagnosis – or, in Rabbi Levy’s case, the unspeakably sad realizaton that she will one day bury her daughter. Even the most fortunate of strivers can’t keep the illusion going indefinitely. Eventually, even those titans who sprint relentlessly into the final lap must one day lean into retirement. Then, soon enough, come the gasping infirmities of age, and finally the awareness that Death will soon come calling.
The drunken Welsh poet Dylan Thomas counseled,
“Do not go gentle into that good night, Old age should burn and rave at close of day; Rage, rage against the dying of the light.”
Noble words, these, and not without a certain desperate bravery. Yet, in the end, the brash author of those lines succumbed to pneumonia, after imbibing huge amounts of whiskey on a bender lasting several days. It was by no means his first. Thomas was a tortured soul, who wore himself out in his frenzied pursuit of hope. Rage, however poetic, is hardly conducive to the discovery of inner peace.
We simply don’t have it in us to manufacture the variety or the quantity of hope we need. It can only be gathered in, and then only by those who have ceased to pursue it.
Young Noa Levy was wise beyond her years. Would that we all could be so perceptive.
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!
I ran across this reflection today, in a Chicago Tribune article, from breast-cancer survivor Catherine Drew Gilpin Faust, President of Harvard University:
"I [remember] my meeting with my physician after the results of the exploratory biopsy. He was telling me what they found and what his thoughts were about what I ought to do.... I'm trying to digest this news, and I start peppering him with questions. What are the percentage chances of this? What are the percentage chances of that? And he answered all my questions, then he said, 'But just remember, whatever you have you have at 100 percent.' And that was such an important comment for me, because I realized, you know, whatever I learned, I was an 'N' of 1, and I had to figure out what that meant within this larger framework of all this information. I also thought it was an interesting thing to have a physician [who was] in a research medical center who was obviously a doctor doing clinical work as well as treatment to be able to remember that, that a patient is an 'N' of 1, not just one in a whole line of statistics. I've often thought of that as I've faced health challenges."
That's a rather perceptive comment on the part of her physician: "Whatever you have you have at 100 percent." Lots of us get stymied by statistics. We get preoccupied by the question, "What are my chances, Doc?" - and by whatever percentage answer the doctor may be so bold as to give us.
I don't fully understand the "N of 1" business. That's mathematics-speak, and I'm not so fluent in that language. I take it to mean, though, that each case is unique. There's no sense buying trouble by assuming someone else's cancer experience will turn out to be our own. Our experience is bound to be different in some way or another, because we're different.
I remember meeting with a friend not long ago, days before he succumbed to his cancer. He was recalling some of the treatment decisions he and his doctors had made along the way. Before deciding on some rather invasive surgery, the doctor had said he felt obliged to tell him that the chances of the surgery being successful were only about 5 percent.
"That's OK, Doc," my friend told him. "I figure I'm going to be in the 5 percent." (He wasn't, as it turned out, but he exercised his prerogative to think that way.)
That was his decision. Other patients in similar situations may decide differently, and I figure that's OK, it's their road they're traveling and no one else's. Yet, my friend chose to exercise his freedom of choice and not let statistics rule him.
He intuitively understood what President Faust is talking about. He knew he was an "N of 1."
The same would go for someone making the opposite choice, even if the odds looked very much better. I've known older patients who declined surgery or treatment when the chances of success were as high as 50 percent. The explanation went something like this: "I've lived long enough, and at my age, I can't expect to live much longer. I choose not to accept the harsh side effects and long recovery the doctors are talking about. Quality of life is important to me. I want to enjoy the days I have left."
According to "N of 1" thinking, that's OK, too.
Yes, there's a lot of science involved in the treatment of cancer. But there's also an art to it.
It's the art of living.
"If I take the wings of the morning and settle at the farthest limits of the sea, even there your hand shall lead me, and your right hand shall hold me fast."
Although my initial staging was "B-cell, diffuse mixed large and small cell," the assumption Dr. Lerner and I have been making is that the relapsed cancer we've been monitoring for the past four and a half years is follicular lymphoma (a small-cell variety). It seems to be behaving in the indolent fashion typical of follicular lymphoma, anyway. After making its first appearance 8 months after my final round of R-CHOP chemotherapy, it's been snoozing.
We've still not been able to get an excisional biopsy of the relapsed cancer. The affected lymph nodes that keep showing up on my scans are not in an easy place to access surgically. There was one attempt to do so, with a swollen lymph node at the base of my neck. That brought me all the way to the operating table, but was called off at the last minute when the surgeon could no longer feel the affected lymph node.
Based on what I've learned about the disease, I'd say the fact sheet is a good one. It reflects some of the latest developments in research. It doesn't mention idiopathic vaccine treatments, though, that are still being researched.
The fact sheet communicates some wonderful news: that, thanks to the energetic researchers working in this field, there is now a range of possible treatments to choose from.
Here's another write-up, from the National Cancer Institute website. One line from that summary of recent research that catches my eye is this one: "For patients randomly assigned to watchful waiting, the median time to require therapy was 2 to 3 years and one-third of patients never required treatment with watchful waiting (half died of other causes and half remained progression-free after 10 years)."
I'm already past the 2 or 3 year median, and have a pretty good chance of landing in the one-third of patients that never require further treatment.
At such time as further treatment may be called for, I think I'd lean in the direction of radioimmu- notherapy (a single dose of Bexxar or Zevalin). Either of those medications seems to me to strike a good balance between effectiveness and quality-of-life issues. I'd rely heavily on Dr. Lerner's recommendation, of course, and would also go for a second opinion with Dr. Portlock, as I did before.
Stem-cell transplant is potentially the most effective treatment of all - but that's riskier, involves multiple side-effects and presupposes that a compatible donor could be found (we've already discovered that neither of my two brothers are a good match, so I'd have to depend on the national donor registry).
Hard to believe it’s been five years already, but it has. Five years ago today, I was diagnosed with cancer.
So much has happened since then. Those early days of uncertainty and fear, knowing that life would never be the same again. Telling the kids. Telling the church. Arranging for time off, to coincide with the predictable valleys in the chemo cycle. Persistent thoughts of dying, even though Drs. Lerner and Portlock and everyone else in the know kept assuring me I have one of those so-called "good" cancers - one that usually responds to treatment.
Once the treatment train had left the station, it picked up speed incredibly fast – or so it seemed. One day, I was given the news. The next, I was being wheeled into an operating room to get my port implanted.
My story didn’t unfold quite that fast, of course. That was just the way it felt to me. There was actually about a month between diagnosis and my first dose of chemo. I can’t recall much of what I did during that time. Once cancer enters your life, it’s hard to think of anything else. I felt numb.
Used to be, patients who reached their five year cancerversary without recurrence were considered cured. I still run into people who think that’s the case. In reality, cancer is such a multifaceted phenomenon that it’s impossible to generalize.
In my case, remission only lasted eight months – although, in truth, the cancer was probably there all along, lurking below the radar of those high-tech scans. “Watch and wait” was Dr. Lerner’s recommendation, confirmed by Dr. Portlock. Just sit tight. No need to shoot any arrows from the quiver until we absolutely have to. You have no symptoms. So, just sit tight. Trust us. This really is a sensible approach, even though it sounds like lunacy.
So, here I am today. Still watching and waiting. I’ve no idea how long it will be before the burgeoning population of cancer cells will reach umpteen million (or whatever the magic number is) and we’ll be discussing which treatment to try next.
Already, there are NHL treatments out there that weren’t available at the time I was diagnosed. Most aren’t quite ready for prime time, but it won’t be long now. Chances are, by the time we’ll be thinking seriously about treatment again, there will be some options available that weren’t even conceived at the time I was first setting out, five years ago.
There’s reason for hope, to be sure. Lord willing and the blood counts don’t rise, I’ll be here to observe quite a number of cancerversaries yet to come.
"David M. Bailey, a singer/songwriter who moved audiences as much with his story of personal courage in the face of terminal cancer as with his music, succumbed to Glioblastoma on Oct. 2 in hospice care near his home in Charlottesville, Va. He was 44.
The son of Presbyterian missionaries, Kenneth E. and Ethel Bailey, Bailey was raised in Beirut, Lebanon. He spent some of his youth in Germany — where he learned to play the guitar and began writing songs — before returning to the United States....
In July 1996, he was diagnosed with Glioblastoma, a particularly virulent form of brain cancer. He then quit his corporate job and turned to songwriting and performing full-time.
'They told me I had six months. They were wrong,' Bailey said. 'Despite what you might hear, hope is a very real thing, and with every passing day, there are more and more reasons to hope.'
For 14 years he defied that diagnosis, writing and performing virtually non-stop, covering 45 states and 21 countries. His concerts were deeply personal, brutally honest accounts — rendered in a musical style that has been compared to James Taylor and Cat Stevens — of his struggles with his illness and his determination to make the most of whatever time God gave him.
His signature tune was 'One More Day.' The chorus goes:
'One more day when you can hold your children One more day you can hold your wife One more day when you can watch the grass grow One more day when you can live your life.'"
It calls to mind the familiar scripture verse: "This is the day that the Lord has made; let us rejoice and be glad in it."(Psalm 118:24)
It's a lesson David taught us: how to live in the now, praising God for all good gifts. His music - and that lesson - will live on, through his recordings.
In some earlier posts, I've written about a musician, David M. Bailey, who's been an inspiration to me. David's a brain cancer survivor who, after undergoing treatment the first time, reinvented his life as a singer-songwriter. Except for the times when he's been undergoing further treatment, he's been traveling the country, sharing his musical message of faith, hope and love in the midst of adversity.
Today, I received this e-mail, sent out to those on David's mailing list, presumably by a friend or relative:
"David was moved to hospice on Friday, September 3, following nearly a week in the hospital. He has been surrounded by family, friends and loving caregivers and has been pretty comfortable.
There’s a day to be filled with music and a day for all melody to cease there’s a day to arm yourself for battle and a day to calm your heart for peace"
dmb 1996
Back in the 1990s, they told David his glioblastoma brain tumor was supposed to have killed him in 6 months. He beat the odds, obviously, by a considerable amount of time. Now that it appears his final days are upon him, let's remember him in prayer, asking God for comfort and expressing gratitude for his remarkable witness of faith.
I regret that I never got to hear David perform live. I do cherish those of his CDs I own, though, and I know many others do, too.
There may be a day for "all melody to cease," but it will only be for the briefest time. David's music will live on.
On vacation in the Adirondacks, I read a remarkable article from the August 2 New Yorker magazine. I was tipped to the article by my brother, Jim – though I later learned from Claire that members of her hospice team have been passing it amongst themselves, causing lively discussion in their weekly staff meeting.
Gawande is a general surgeon who practices at Boston’s Brigham and Women’s Hospital, and who teaches at Harvard Medical School. He’s operated on a lot of cancer patients. Some benefitted mightily from his expertise, and others’ last days would likely have been more tolerable without the invasive procedures. Yet, hindsight is always 20/02, and ahead of time it’s always a tough call.
It’s his physician’s perspective that leads Dr. Gawande to question the lack of agreed-upon procedures for end-of-life decision-making in America. For a country with some of the most advanced medical care in the world, our practices in this area are remarkably haphazard.
Gawande points out that the financial costs of successful cancer treatment can typically be graphed as a bell curve: there’s a steep climb from the time of diagnosis to a sort of plateau, as very expensive scans and treatments are deployed. Then, there’s a drop-off in costs as the patient recovers. In the case of patients whose treatment is unsuccessful, the frequent result is half a bell curve. We throw some very big money at solving problems that are – statistically speaking – unlikely to be solved, sending the line of the graph soaring upwards. Because it’s a human life at stake, doctors typically follow the lead of patients and their families, ordering such last-ditch treatments if that’s what they want. In many such cases, the patient dies anyway, often after many days, or even weeks, of intensive care. If the ICU stay is long, those days can end up costing as much as – sometimes even more than – the cancer treatment itself.
These are agonizingly difficult decisions, some of the toughest in medicine. When to pursue extraordinary, experimental treatment? When to throw in the towel and admit that maintaining a reasonable quality of life for the patient whose health is in a tailspin is more important than the increasingly quixotic search for a cure?
Gawande remarks that nearly all categories of dying patients and their families – with one exception – are ill-prepared to wrestle with such complex, emotionally fraught decisions. When, as too often happens, everyone’s energies are single-mindedly fixed on the search for a cure, doctors fail to raise the what-if question of death at all. It seems to them premature. Yet, when that likelihood suddenly looms large, and quick decisions have to be made about such interventions as feeding tubes and ventilators, patients and families scramble to wrap their minds around the new state of affairs. Unable to achieve unanimity, a great many families fall back to the default position, which is to press on relentlessly in search of a cure – even though the doctors may know, full well, that chances of extending such patients’ lives by more than a few weeks are slim.
Granted – as Claire reminds me, based on her hospice ministry experience – there are some cultural and ethnic traditions that inform this process. Orthodox Jews, for example, typically make decisions within a moral framework that nearly always opts for treatment, no matter what the chances of success. African-Americans and Hispanics, bearing cultural memories of parents and grandparents to whom the system too often denied advanced care, are more likely than others to press for it, even against medical advice.
Referring to science writer Stephen Jay Gould’s oft-quoted 1985 essay, “The Median Isn’t the Message” – in which Gould tells the story of how, upon learning he had mesothelioma, he decided to take his place among the tiny percentage of patients who survive, and did – Gawande speaks of the “tail” of the statistical curve. That’s the narrow portion that stretches a good distance into the future, and includes the fortunate few patients who manage to beat the odds and survive a deadly cancer. It’s good to remember, when faced with such stories, that the statistical median is just that – a median. Always, there are some who do better than clinical expectations, others worse. An awful lot of people, though, are trying to ride the tail of statistical probability – far more than will end up actually being on it. Gawande writes:
“I think of Gould and his essay every time I have a patient with a terminal illness. There is almost always a long tail of possibility, however thin. What’s wrong with looking for it? Nothing, it seems to me, unless it means we have failed to prepare for the outcome that’s vastly more probable. The problem is that we’ve built our medical system and our culture around the long tail. We’ve created a multimillion-dollar edifice for dispensing the medical equivalent of lottery tickets – and have only the rudiments of a system to prepare patients for the near-certainty that those tickets will not win. Hope is not a plan, but hope is our plan.”
I mentioned above that Gawande identifies one category of patients and their families who are better prepared for end-of-life decision-making. He’s talking about those who have received hospice services. Alone among the specialties of modern medicine, the hospice movement is not afraid to face death head-on and talk about it with patients – well before the anxious moment in the little family waiting room just off the ICU, when a doctor (or, just as likely, a critical-care nurse) sits down on the vinyl-covered furniture with the family and informs them a decision needs to be made about discontinuing life-support.
Patients who have signed on for hospice care have already decided they’re not going to cling to the slim tail of possibility any longer. They’re going to strive for the best quality of life they can construct in the here-and-now, placing their hope somewhere other than joining the tiny percentage who defy medical expectations.
I can’t begin to recall the number of grieving family members I’ve spoken with who told me they wished their loved one had gone on hospice earlier. Claire confirms for me, from her experience working with bereaved family members, that this is a nearly-universal comment. Curiously, the vast majority of hospice patients live no longer than a few days. That’s not because hospice care is somehow bad for them – quite the opposite. It’s because, by the time most patients make this decision, they’re already so far gone that hospice functions as little more than a transfer-station between the hospital and the funeral home.
It’s not meant to be that way. The hospice ideal is for weeks or even months of active, but mostly palliative, treatment. The hope is that the hospice experience will provide a gracious space for patients and their families to work through the full range of issues – medical, emotional, spiritual – they need to deal with at the end of life. Surprising as it may seem, there are even some patients who go on hospice for a time, then go off it – their improvement has been such that the “six months or less to live” criterion of hospice admission no longer applies to them.
So, signing up for hospice care is not giving up, as some fear. Far from it.
The key to a higher quality of life for the dying, Gawande points out, is communication. One of the things hospice team members do exceptionally well is to encourage patients and their families to share their thoughts and feelings about dying, then to listen attentively and respectfully to what they say. Next, they help them think through what goals they have for the rest of their lives, and do whatever they can to help them attain them. “You don’t ask, ‘What do you want when you are dying?’” explains one expert. “You ask, ‘If time becomes short, what is most important to you?’” Gawande observes: “People die only once. They have no experience to draw upon. They need doctors and nurses who are willing to have the hard discussions and to say what they have seen, who will help people to prepare for what is to come – and to escape a warehoused oblivion that few really want.”
The asking of such questions was meant to be a central part of the new health-care legislation recently passed by Congress, but politics blocked it. The Tea Party mob ignorantly slapped the label “death panels”on the funding for these vital conversations, then pressured Congressional leaders to excise it from the bill – which they did, so as not to lose the bigger battle. This is a terrible miscarriage of justice for the dying: the sacrifice of a proven care approach that offered real promise for enhanced quality of life.
When the only goal worth talking about is to beat the disease, Gawande concludes – no matter what that may mean in terms of unproven, experimental treatments – the statistical outcome in nearly every case is going to be disastrous. Which general would you rather have leading the troops into battle? George Armstrong Custer or Robert E. Lee?
“Death is the enemy. But the enemy has superior forces. Eventually, it wins. And, in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who knew how to fight for territory when he could and how to surrender when you couldn’t, someone who understood that the damage is greatest if all you do is fight to the bitter end.”
This article is a good read, for anyone whose life has been touched by cancer – either their own or that of a loved one.
