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.
“What’s it like to go through cancer treatment? It’s something like this: one day, you’re minding your own business, you open the fridge to get some breakfast, and OH MY GOD THERE’S A MOUNTAIN LION IN YOUR FRIDGE...”
That’s the beginning of a rather creative blog post by a cancer survivor named Caitlin Feeley. It brought a smile to my face because it’s so accurate.
Not the mountain lion in the fridge part, of course: but the things various people say to you as you’re trying to claw your way up the mountain where the only creature capable of fighting off the mountain lion — a bear — happens to live. Things like, “That’s not really a mountain lion, it’s a puma,” and “I read that mountain lions are allergic to kale, have you tried rubbing kale on it?”
I don’t feel right about cutting and pasting the whole thing here, but here’s a link where you can read the whole piece.
“Dear cancer, I hate you.” Those words that begin the personal essay are jarring. They’re written by a young woman named Jenna Rose Lowthert, in an essay published in our local newspaper, in memory of her mother, Gina.
Gina died of cancer.
Yes, cancer is something we come to hate. But — as in the odd occurrence of the word “dear” in this letter’s opening — there’s also a macabre intimacy to it.
We live with cancer — both those of us who are actively being treated, and those of us in remission. We hate it, yes. But it’s also become part of our lives.
It’s part of us. A symptom of our fallen condition on this earth, perhaps. A dark mystery. The intimate companion we never invited into our lives.
Here’s some of what Jenna wrote (click on the link above to read the whole article):
Dear cancer,
I hate you.
You’re terrible.
You are the true definition of a heart breaker.
You single-handedly ruined my entire life in the matter of 10 short months.
You took away my best friend, the only person in this world who will ever love me unconditionally.
You took away my mother — and you took her in the most horrible way possible. You stopped her heart from beating at the young age of 48....
Yet, as Jenna has evidently discovered, cancer is also a teacher, although a harsh one:
The same thing that drives me to live after this loss is the same reason I hate you.
But cancer, you did not win the day my mother gained her angel wings.
You did not beat her. She beat you, as she left this world with her love, her hope, her strength, her bravery and her dignity, surrounded by the people who she loved the most.
You may have destroyed a lot, but you have, in turn, taught me lessons I never thought I would learn by age 25. You showed me just how short and precious life truly is. You showed me that every day is a gift and that I should never take anything or anybody for granted. You have forced me to recognize a strength within myself that I never knew existed.
Cancer, although I hate you with all of my heart, you have brought out the woman in me that my mother always hoped I would be....
And that is why you did not win.
Cancer is our teacher, but it is also our adversary. In contending with this challenge, we grow stronger. And better.
Who’s to say if this is the best way for us to grow? Who’s to say if God could have accomplished the same purpose in some way that’s easier, less painful?
From our limited vantage-point, we can never say for sure. But we can strive to live with cancer. We can strive to do it with courage, as Jenna and her mother have.
A poignant personal reflection on life and death, today, from Anne Lamott's book, Traveling Mercies:
We were, in fact, going to learn later that afternoon that my father had a brain tumor on the word section of his brain, a metastasized melanoma, something no one had ever survived at that time. In just a week or so, doctors were going to take out as much of the tumor as they could, but they weren't going to be able to get it all; its tentacles reached deep inside his brain. He was going to come home from the hospital to his girlfriend's house looking like Dr. Frankenstein had had a go at him. He was going to have the most aggressive forms of radiation and chemotherapy available, be part of a clinical trial that wouldn't work for him; he was going to have one good year in between these treatments where he would be able to work off and on, and walk with us every day; he was going to live to see John graduate from Berkeley; he was going to live to see my younger brother graduate from high school; he was going to live to see me sell a novel about our family to a fancy New York publisher; he was going to live to read a draft of it while his brain was still functioning.
But then the cancer was going to start to eat away at his mind, and he was slowly going to end up like a huge friendly toddler. He was going to have to bear knowing for a while that his mind was going; he was going to have to bear letting his kids and girlfriend dress him, clean him, feed him; he was going to end up living at the one-room cabin with me and Steve, his girlfriend and oldest friends around, playing Pete Seeger on the stereo, and Billie Holliday, Joan Baez, and Mozart, the Modern Jazz Quartet. He was going to end up in a coma a month before he died, the cabin turned into a hospice room and us the stricken nurses. My father's handsome fair face was going to have tumors on it— tumors on the skin that today was flushed with health. The cancer was going to spread like a chain of stores, and he was going to need morphine and catheters and lemon swabs and fleecy bedding. Maybe he would hear the music we played on the stereo in the cabin, maybe he would be aware of us watching him through the night, but what we did not know that day on the lava rock was that he was going to die two years from this August morning—this morning when the three of us were walking about peering into tide pools, with our dog Muldoon bumping into our legs, the late-summer diffusion of light making everything in the pools seem larger: the sea anemones, the bloom of algae, the tiny crabs.
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 don’t know what’s worse, the cancer or the loneliness,” he said. “Because at night, when Lolly (his wife) kisses me on the forehead and puts me to bed and turns out the light, it’s just me and this disease. When I leave the doctor’s office, it’s just me and the cancer. When people visit, they leave and then it’s just me and the disease.”
There is something isolating about the experience of cancer — or, I suppose, any serious illness. If you catch a cold, there are plenty of people who can commiserate with you about the runny nose, the sore throat and all the familiar symptoms. Everyone knows what it’s like to have a cold. Talking about those symptoms with someone else is an exercise in community.
Not so with cancer. The majority of the people you meet have never had it — or, if they’ve had some other form of cancer, their symptoms can easily be very different from your own. Sitting in the chemo chair, you look around and realize that only the people reclining in the other chairs have the slightest idea of how it feels. Not even the nurses, who pump that goop into people’s veins every day, know how it feels.
But there’s some consolation, as Mike Di Ionno points out. There are people — a very small number of people — who hang in there with you. They can’t sympathize, because they haven’t been through it. But they do their best to empathize:
“I have learned that the obituary words ‘surrounded by family’ are the most beautiful phrase in this newspaper. It is the only thing that eases the loneliness of the disease. It comforts, when medicine fails.”
Some good advice for all of us, when a friend or family member has cancer:
“When someone is in the final stages, we all feel helpless and uncomfortable, and worry about being intrusive on private pain and grief. We ask, ‘What can we do?’ My answer today is, ‘Show up.’ Show up and hold their hand. Show up and say the things you’ll regret not saying, even if they are whispered in the ear of a comatose person. Leave nothing unsaid. Leave nothing unsaid. Show up in person, call on the phone. Prove to them they were loved and that they mattered.”
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?
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 a great number of helpful websites offering support for those dealing with cancer and their families, but one of the most helpful I've seen is a new site, My Cancer Circle. Cancer patients and/or their caregivers can arrange for a complimentary web page, which gives them a central place from which to disseminate news, coordinate support (such as meals delivery) from family members and friends, etc. It's got calendars, blogging tools and other features to provide a central place for getting the word out and coordinating the efforts of various folks who are trying to help.
It looks to me like the marriage of a project-planning team's intranet site and a cancer blog. Great concept.
If you set up a circle, it's private. Members have to be invited in order to get a login and password.
I've seen other sites that attempt to do something like this, but this one looks like the most full-featured I've seen so far.
Saw a perceptive blog posting today on the New York Times website by Suleika Jaouad, a young woman who’s undergoing a bone-marrow transplant for leukemia.
She makes the usual observation – something I remember well, after going public with my diagnosis – that she’s experienced a whole range of reactions from people. Some seem able to process the news, others get flustered. Some friends are right there for you, others go AWOL, at least for a while.
Cancer’s a big, big subject, and it calls forth a range of emotions. Suleika admits being surprised and troubled by this at first, but then when she got a little distance on the situation, she became more philosophical:
“But in the year since my diagnosis, my feelings of hurt have given way to understanding. How can I expect anyone to produce the perfect, reflexive response to such sudden and unpleasant news? Cancer can catch even the best of us off guard. Sometimes the emotions come pouring out. Sometimes they stay locked inside. I've realized that it's nearly impossible to summon the ‘right’ words while simultaneously processing the news that someone you love has a life-threatening illness. I find myself counseling my friends and family that there is no perfect thing to say – but that they just have to say something.”
I’d want to add, “Sometimes you don’t need to say anything at all, just be there.” But I think that’s what she means.
What is it that makes us yearn for a script to bring to our most significant human interactions? We seek the perfect words, whatever that means. Sure, words are important, but in the last analysis, it’s seldom the words our friends and family say that’s important. It’s who they are, and how their loving presence intersects with ours.
Cancer changes a lot about our lives, but that’s something that doesn’t change.
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!
I’ve been recovering at home for the past week, following last Monday’s surgery for benign enlargement of the prostate. Everything went well, as predicted, and I’m on track for a full recovery. Tomorrow I’ll venture back over to the church office, and see how things go.
Today, though, I’m thinking about an object that came into my possession recently. A few days before my surgery, I did a Google search for the name of my father’s old business, a high-end men’s clothing store called Wilton & Woolley. It was located on Main Street in my hometown of Toms River, New Jersey. (The “Woolley” name belonged to a silent partner, a haberdasher from another town who had fronted him some money to start the place.) My father, Carlos E. Wilton, Sr., operated the store for a decade or so in the late 1950s and early 1960s, before getting out of the business in the nick of time, just before Toms River’s once-vibrant Main Street was bled dry by a new shopping mall on what was then the outskirts of town. Dad used to tell my brother Jim and me that Wilton & Woolley was our family business, that we all owned it together and that one day maybe we kids would have it for our own.
I can’t imagine being a retail merchant, myself – even if an old-fashioned haberdashery like his could have survived to be a going concern today. Yet, that’s the way my father used to think when we were kids, and who were we to disabuse him of the idea?
I was looking the other day for a photo of the Wilton & Woolley storefront to put on my Facebook timeline, and never did find one. Google led me, instead, to an eBay page, where somebody was selling an old printer’s block with the Wilton & Woolley name on it.
It was a strange feeling to run across that item. It felt vaguely wrong to see it there, like it was a piece of my family heritage on the auction block.
In fact, this hunk of wood and metal had never been owned by anyone in my family. Back before the days of computer graphics, print shops would create metal plates they would insert into a rack beside similar blocks, along with a whole lot of the moveable type that was then their stock in trade. Then, they would slather ink onto the whole assemblage, and run as many copies of the letterhead, handbill or brochure as might be needed. Once the job was finished, printers would save blocks like this one to reuse in the future. In fact, on the bottom of the piece of wood is the name and address of the long-shuttered print shop – evidently one my father patronized for advertising. The store name appears in the jaunty, 1950s typeface he always used, the closest thing Wilton & Woolley ever had to a logo.
I felt like I had to have the thing, without knowing exactly why. I’ve got no place to display it, no real use for it. God knows we’ve already got way too much bric-a-brac in the house. Yet, for 15 bucks I figured I could afford to free it from the auction block, so I did.
It arrived in the mail just after I got home from the hospital. With its wood-block backing, it’s about 5 inches long. It’s hefty, substantial, reassuring to hold. The wood still bears an ancient smear of black ink. To me, it feels like a link to my past.
I’ve got a few small items associated with my father, but not much. Sadly, his life contracted in his later years, as he fell victim to years of substance abuse – alcohol and tobacco, the drugs of choice of his generation – and what was, very likely, undiagnosed clinical depression. After selling the store, he hit the road as a traveling salesman, first selling school library books for major publishers and, later, law books. When he was motivated, Dad won all the sales awards. Yet, inevitably, he’d grow tired of the grind. He would slack off on the sales calls, get into some kind of argument with the bosses and they would part ways. He jumped from one publisher to another in that way, every few years. After he and my mother divorced, he switched to selling life insurance. Abruptly, Dad moved clear across the country to the Central Valley of California, where he’d grown up, intending to start afresh in the life-insurance business out there.
My father ended his working life as a night clerk in a convenience store called the “Git-n-Go” (photo is not of his store). By that stage of his life, he amiably settled for enough money to pay the rent and keep him in booze and cigarettes. It didn’t seem to faze him when the store was robbed, twice, on his shift – once at knifepoint, giving him a little scar on his neck where the knife-tip had broken the skin. He never even told us when these things happened. We learned about them only years later. Not a big one for communication, was my Dad.
After he almost died from a dissecting aortic aneurysm – that led to an air-ambulance helicopter flight to Stanford University Hospital for herculean surgery to give him a new aorta – he moved back east to Newton, Massachusetts, to an apartment down the street from my brother, Jim. Dad had finally quit smoking by then – a month in ICU on a ventilator will do that to you – and there he lived the last year or so of his life, subsisting on two or three six-packs of Budweiser a day, because he figured it was better for him than the Canadian whiskey (and, later, vodka) he’d formerly favored.
Nothing of what my father did in his working life left any sort of legacy. He always had the misfortune to find himself on the downward slope of major economic change, but did manage to bail out in time before the wave crashed. First, the 1960s blue-jeans era reduced the market for “Mad Men” tailored suits and fedora hats. Then, the advent of the shopping mall did away with most Main Street family businesses of any kind. Dad did well in the book business for a few years, but was fortunate to jump ship before the Internet changed that world forever. By then, I suppose he was feeling burned-out as a salesman, but it was all he knew how to do. Life insurance was never a good fit for him.
I’ve only seen Arthur Miller’s “Death of a Salesman” once in my life, but I know I could never bring myself to do so again. That grim drama’s just too close to home.
The printer’s block in my hand feels like a sort of legacy. It’s solid and substantial, concrete evidence of a nearly-forgotten family business my father hoped and dreamed would outlast him. Maybe he imagined that, in time, he would buy Mr. Woolley out, and he’d rename it “Wilton & Sons.”
At age 55, I’ve reached the stage of life where I’m thinking about my own legacy. A couple of cancer experiences have pressed such ruminations upon me a bit earlier than most, and this recent surgery and slow recovery have reminded me once again that, as that spoilsport Isaiah puts it, “all people are grass, their constancy is like the flower of the field.” (Isaiah 40:6)
Myself included, of course. Parish ministry is notorious, even in the best of times, for its abstract, hard-to-categorize results. In this profoundly confused era, we who pastor mainline Protestant churches are all too often reminded that we’re serving a shrinking, aging market. I’ve grown quite tired of reading articles in professional journals that include the familiar Cassandra-words: “If present trends continue...”
What will my children hold in their hands, one day, that reminds them of me, of my years of toil in the vineyard of the Lord? A Bible, a calling card, a tarnished home-communion set, a disintegrating copy of one of the pulpit-helps books I’ve written? As my books go out of print, much of what I’ve created, in the form of writings, lives now on the Internet: sermons once voiced in their time, but which now persist only as ghostly electrical impulses, mere droplets in a vast and ever-expanding sea. As the church continues to lurch through rapid societal change, I wonder: will my grandchildren yet unborn even know what a sermon is – homely, spoken words of testimony, unadorned by electronic finery?
Ultimately, I suppose, my legacy is my children – as my brothers Jim, Dave and I are my father’s legacy. After more than 20 years of ministry in one church, and 6 years before that of guiding others into ministry as a seminary assistant dean and admissions director, there’s also another group of people that are my legacy. Those, of course, are the other lives out there I’ve touched, and – I hope, on my best days – influenced for the better. Sure, a great many of the babies I’ve held in my arms at the baptismal font have drifted away from the church in adulthood, but not all. In a time of convalescence such as I’m now going through, the many cards, emails and other caring communications I’ve received remind me that what I do continues to be appreciated.
“O that my words were written down! O that they were inscribed in a book! O that with an iron pen and with lead they were engraved on a rock forever! For I know that my Redeemer lives, and that at the last he will stand upon the earth...” (Job 19:23-25). For any of us, our true legacy is no block of wood with lead type fixed upon it. It’s flesh and blood. As it was for my father, it will one day be true for me. Soli Deo Gloria.
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.
(Sorry for the profanity, both in the headline and in the article, but you'll see how it makes literary sense in this case.)
The article gave me a good chuckle, but it also points out how we who have cancer are who we are. The disease strikes randomly, without regard to personal virtue (or lack thereof).
It's also a sly send-up of all the adulatory talk that goes on about people with cancer. When you get the disease, you find that people are a little more inclined than usual to say complimentary things about you.
Was anyone ever lauded for approaching their so-called "battle" with cancer like a total weenie? I'm sure many have taken precisely that approach. But they never say anything about that when they're hanging the medal around your neck at the Relay For Life.
Don't get me wrong. Cancer can be transformative. I believe it has been in my case, and mostly for the better (although - true confessions time - four and a half years later, I could stand to ditch the procrastinating, devil-may-care approach to personal financial management that I fell into during my chemo-treatment days).
For all the times we survivors may joke about "playing the cancer card," the diagnosis doesn't give us a free pass for treating others with disrespect.
I suppose the experience of dealing with cancer does lead some of us to rethink, maybe even reform, our lives. Others, maybe less so.
Are we somehow obliged to approach our disease like the opportunity for transformation it just may turn out to be? I don't think so. It's an individual thing.
We all do well to try to avoid judging others in that regard. Those who want to take the weenie approach have every right to do so. And they probably still deserve a medal around their neck.
Deep down, I'm enough of a Calvinist to believe that we're all sinners, and that chemo and radiation have little effect on that particular malady.
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.
When I was sick, I was so fortunate to have so many friends from the church bring over food for the family. We never got tired of those gestures, repeated every other day or so for months. It wasn’t an economic thing; it was a way of giving us time with each other.
Of the clueless comments cited by survivors in the video clip, the one I remember hearing is “I know exactly how you’re feeling.” To me, that’s probably the number-one thing not to say. I’s meant to be a helpful comment, but it’s so patently untrue. Every person’s journey is different. Sure, there are points of commonality, but we do well to respect each other’s differences.
I also remember people quizzing me about what I might have done that brought on cancer. Is there any dietary or environmental link that leads to lymphoma, they wanted to know. I figure these comments had more to do with the person making them than with me. They saw what I was going through, and they were trying to reassure themselves that the same thing wasn’t likely to happen to them.
I do have to confess, though, that when I hear of someone diagnosed with lung cancer, I really have to refrain from asking if the person ever smoked. Maybe it’s a carryover from my experience with my father, who died of smoking-induced emphysema complicated by lung cancer. I want to reassure myself I’m not a risk.
Whether the loved one persisted in unhealthy, cancer-causing behaviors is neither here nor there. Such a question has nothing to do with begin supportive. It’s more an attempt to satisfy our own morbid curiosity, and to allay our irrational fears. So, I really work hard to avoid asking that one, myself.
I’m sitting on the screened-in porch of our little house in the big woods – what they call, here in the Adirondacks, our camp. These are the waning days of my vacation.
I’m joined here today by our college-age daughter, Ania. She’ll be with me through the weekend, before we make the long drive home on Monday.
I picked Ania up at the train station in Fort Edward, near Glens Falls, late Friday night. The train was nearly 3 hours late – good ol’ Amtrak – so by the time we drove the couple hours back up to our camp, we didn’t get to turn in till 3 a.m. Needless to say, we both slept through the morning.
Ania’s working on a jigsaw puzzle, one she remembers from when she was much smaller. Of all the things we could be doing, this is what she wants to do right now, and that’s fine with me. This is her time, and I’m happy to simply enjoy it with her.
Turns out the puzzle is missing a couple of pieces. That doesn’t faze her. To Ania, it’s all about the process, not the product.
I’ve had a week and a half to ease myself into relaxation mode, but Ania has the gift of being able to jump right into it. She’s much better at living in the now than I am. I take a lot longer to shed all the to-do list items I typically carry around in my head.
Living in the now is a survivorship skill. Some of us are just slow learners.
News has just come through, today, of the death of actor and model Farrah Fawcett. I wrote about her cancer struggle in my May 16th blog entry. Her television documentary, Farrah’s Story, was a graphic account of the last months of her life.
While the film attracted some negative comments from critics, who branded it as reality-show exploitation, I saw it differently. It seemed to me a courageous (although rough-around-the-edges) statement from a dying woman whose deepest desire was to “not go gentle into that good night.”
Sure, Farrah’s story was hardly typical. She was an enormously wealthy woman with the means to jet all over the world seeking alternative cancer treatments. She was also more vocal than some about the problem of how cancer was affecting her physical beauty (hardly surprising in a woman who, in her prime, was a fashion icon). Yet, whose cancer story is ever typical, anyway? We’re all individuals, and in our respective responses to this disease we each display our own interior beauty.
This morning I walked across the street to St. Mary’s By-the-Sea Episcopal Church to attend the funeral of a neighbor, Jane, who died at mid-life after having been diagnosed about a year ago with a pretty-much untreatable form of cancer. She left behind two teenage daughters and a whole churchful of friends.
Jane designed the funeral service herself, down to every last detail. While it wove in and out of the Book of Common Prayer liturgy, the musical selections and personal testimonies were hardly typical funeral fare. We sang along with the choir to Pete Seeger’s “Turn, Turn, Turn” and listened to a talented guitarist sing the jaunty medley of “Somewhere Over the Rainbow” (as styled by the by the late Hawaiian singer Israel Kamakawiwo’ole) and “What a Wonderful World” that’s been making the rounds of indie singers.
We finished by singing the Beatles’ “Let It Be” – a baby boomer anthem if ever there was one. I’ve always heard the song’s mention of “mother Mary” was inspired by a dream Paul McCartney had of his own mother, whose name was Mary. After checking it out on Wikipedia, I learned his mother died when he was 14, of cancer. As she came to Paul in the dream, he was blessed with an overwhelming feeling of comfort and peace. According to Wikipedia, he later told an interviewer: “It was great to visit with her again. I felt very blessed to have that dream. So that got me writing ‘Let It Be’.” Speaking to another interviewer, he shared how in the dream his mother had comforted him: “It will be all right, just let it be.”
Some have assumed, I know, that “mother Mary” in the song must surely be Mary, the mother of Jesus, but of course that’s not the case. So, it doesn’t make sense, as some have done, to sing it in church as a celebration of that Mary. It turns out, though, in this context, “Let It Be” has a compelling personal (if not exactly liturgical) rightness.
From what I know of Jane – a deep-thinking, highly organized person – it’s likely she knew this story, and included it in the service for that reason. It’s the message she would have wanted her own daughters to take away from the experience of losing their mother:
“And when the night is cloudy, there is still a light, that shines on me, shine until tomorrow, let it be. I wake up to the sound of music, mother Mary comes to me, speaking words of wisdom, let it be.”
It’s hard to believe it’s been a week already since my last blog entry. Life has been overflowing, of late – not so much with rich and wonderful experiences as with the sort of minutiae that distract from the main thing.
Anyway, last night I did manage to take some time to view Farrah’s Story on NBC TV. For several years, Hollywood celebrity Farrah Fawcett has had anal cancer that’s now metastasized to her liver. Her prognosis is not good. For the past couple years, she’s brought a video camera along on most of her medical visits. Her intention, at first, was simply to keep a personal record of the complex medical information the doctors were feeding her, but eventually it occurred to her to make a documentary out of the footage.
This is the program that premiered on NBC last night. As the documentary airs, she’s no longer receiving chemotherapy, but is said to be receiving other anti-cancer drugs. It does seem, sadly, that her doctors have just about run out of options.
The film records Farrah saying, long before she reached this stage in her treatments: “So I say to God – because it is, after all, in his hands – ‘It is seriously time for a miracle.’”
It’s a gritty, realistic documentary. It pulls few punches in displaying the pain and exhaustion that so often go along with aggressive cancer treatments. So eager was Farrah to receive the most cutting-edge treatments that she left the care of her Los Angeles doctors for a time, and flew to Germany. There she had found a surgeon willing to undertake the tricky removal of her anal tumor, as well as another doctor who was willing to directly destroy her liver tumors, one by one, with a painful laser ablation treatment that involved sticking needles directly into her abdomen.
Farrah evidently wanted to show it all: a rather surprising move, for a movie star who’s spent her life carefully managing her public image. “There were things that I thought were too invasive to film,” Farrah’s friend and collaborator Alana Stewart explained, in an interview. “But Farrah said, ‘Film it. This is what cancer is.’”
The treatments seem to have bought her some time, little more. Hers is the story of a cancer survivor who's determined to do everything possible – even pushing the limits of the possible – to aggressively turn back her disease.
Because Farrah Fawcett is who she is – a world-famous celebrity, and a very wealthy woman – she has access to treatment options few other patients can consider. The film portrays her flying back and forth to Germany on a chartered jet, and staying, during the time of her treatments, in a picturesque alpine chalet that looks like it comes straight out of Heidi. Here’s a woman who’s lived her adult life at the pinnacle of privilege, but at the end of the day, she’s like any other cancer patient. Cancer is a great leveler, that way.
Towards the conclusion of the film, Farrah even loses her trademark mane of blonde hair. I found it a strange experience to watch some of her close friends describing what a horrible sacrifice this was for her, as though a coiffure were life itself – but then, I had to remind myself, these are Hollywood people. Their aging faces display the craft of the cosmetic surgeon. For them, physical beauty takes on disproportionate importance. It seems less so for Farrah herself, actually, than for those around her.
In the film, Farrah’s longtime companion Ryan O’Neal pays tribute to her inner beauty – and that’s the impression I’m left with, from this rather roughly-edited, but very realistic film. Farrah’s Story is the tale of a survivor. Whether or not she gets the medical miracle she tells God it’s “seriously time for,” there are miracles aplenty of strength, perseverance, community and love.
