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. DISCLAIMER: I’m not a doctor, so don't look here for medical advice.
“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.
“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.”
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.
Episcopal Rector Gary Jones, a fellow cancer survivor, writes of a recent visit to his oncologist’s office that revealed to him a little bit of Easter.
Gary
hadn’t been to the office for some time, and looked quite a bit
different from when he had been going there regularly for his chemo
treatments. His hair had come back, for one, but he also knew he looked
and felt stronger and more fit.
He heard a nurse in an adjoining
room call out his name, as the next patient to be seen. “Gary Jones,”
she said, in a deadpan, professional tone. But then, she recognized the
name. “GARY JONES!” she cried, with laughter in her voice, and came
running out to greet him with a smile.
Let’s have Gary continue the story himself:
“At
first, she didn't recognize me, because she had never seen me with
hair. And besides, I had started weeping when I heard her calling my
name. I don’t know what happened to me; I just couldn’t help it.
But
I recognized her. She had cared for me for months. She was my sister,
my mother, my friend, my priest. In the way that Jesus intended us to
be for each other, I realized that she was my Lord, whom I recognized
when she called my name.
Ubi caritas, Deus ibi est. ‘Where there is love, God is there.’”
What a blessing it is to be recognized. And what a further blessing it is to be recognized by name! We honor one another when we welcome one another by name.
As Jesus honored Mary Magdalene, that Resurrection Day. And as he honors us, still.
Happy Easter Season!
(Gary is Rector of St. Stephen's Episcopal Church in Richmond, Virginia.)
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.
A remarkable television moment this morning, as ABC Good Morning America broadcaster Robin Roberts delivers an emotional announcement that she has myelodysplastic syndrome (MDS), and is starting treatment that will ultimately result in a bone-marrow transplant.
This isn’t the first time Robin has been in the news with a very personal medical story. Five years ago, she received successful treatment for breast cancer, and spoke about it on the air. Today, she sat on a couch with other members of the Good Morning America team gathered around her for support, and told her viewing public of her diagnosis. A helpful stagehand had attached a box of Kleenex to the couch with velcro. She didn't need it.
It’s really worth watching the video clip of Robin’s Good Morning America announcement. It’s a fascinating mini-case-study of what it means to live with cancer, in community with others. The reactions of her colleagues sitting on either side of her are just as illuminating to watch as she herself is.
Although Robin didn’t use the “C” word on the air, MDS is considered to be a blood cancer in the same family as leukemia and lymphoma. Treatments are similar. Robin has the good fortune to have a sister who’s a perfect donor match (which tells me she’s going to have an allogeneic stem cell transplant, generally considered to be the most effective). Good for her.
At such future time as I may have to have a stem cell transplant, a donor’s not going to be so easy to find. Both my brothers have been tested, and we’ve learned that neither one of them fits into the 25% of siblings who are typically a good match, so I’d have to rely on finding a volunteer through the National Bone Marrow Donor Registry.
Robin is planning to continue working, even though a PIC line may be visible on her arm (not a big deal for most people, but in the image-conscious world of TV journalism, it’s significant). She will, of course, eventually be out on sick leave for an extended period of time, as she goes into isolation for the actual transplant. Yet, in the months leading up to that time, as she receives various drugs to prepare her for the big event, she’s going to keep going before the cameras, living life as usual.
While this may sound extraordinarily courageous to some viewers – and, indeed, to some of Robin’s colleagues sharing the couch with her – to anyone who’s been in that situation it’s not so surprising. What most of us want to do, once we’ve gotten over the initial shock of our diagnosis, is to keep on living our lives. This is the second time around for Robin, when it comes to cancer treatment. While she’s obviously emotional going before the cameras to tell her story, it makes sense to me that she wants to keep on keeping on, with a minimum of fuss. In Robin’s own words, “It’s about focusing on the fight, and not the fright.”
If her viewers catch sight of a bandage on her arm, indicating the presence of her PIC line, then it will be a helpful reminder that there are far more people living with cancer than dying from it.
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.
In an article in the June 10 New York Times, cancer survivor Bruce Feiler shares a list of 6 things never to say to sick people, and 4 remarks that are always welcome. With one glaring exception, I agree with him.
Here’s his list of “Nevers”:
1. WHAT CAN I DO TO HELP? Nobody likes to answer this question, says Bruce. Rather than relieving sick people, this question puts the burden back on them to come up with something. Just do something, he says, and don’t worry about whether it’s exactly the right thing.
2. MY THOUGHTS AND PRAYERS ARE WITH YOU. This is the one I disagree with him on, big time. On the contrary, I always find this incredibly comforting and empowering. He calls this a “mindless cliché,” a “hackneyed expression,” a “platitude.” I dunno, maybe I hear this often enough from people who are actually praying that it doesn’t strike me as false.
3. DID YOU TRY THAT MANGO COLONIC I RECOMMENDED? I had a few experiences, too, of people recommending their wacky cures to me. (Can you say, “Quack, quack”?) Worst of all was the guy who stopped by to offer me a “free” $40 bottle of açai juice, then made sure to tell me he and his wife were in this pyramid marketing scheme, and I could use my role of influence as a pastor to help a lot of other people by getting this healthy product to them, and... need I say more?
4. EVERYTHING WILL BE O.K. I’m glad you feel that way, but only hearing this from my doctor is going to make me feel any better.
5. HOW ARE WE TODAY? Thankfully, this is one I never did hear from anyone – though I wouldn’t be too happy about it if I did. When you walk around with "Rev." in front of your name, I suppose people are less likely to talk down to you.
6. YOU LOOK GREAT. Yeah, heard this a few times. Didn’t believe it for a minute, under the circumstances. Actually, I do say this from time to time when I’m visiting people in the hospital – but only when it’s really true. I figure if it’s true, it’s worth saying. If it looks to me like someone’s making a robust recovery from surgery or whatever, I figure it’s encouraging to pass the observation along. Maybe I’m wrong about that. And yes, I realize my CPE (Clinical Pastoral Education) supervisor, back in seminary days, would never go along with it. (“Don’t try so hard to be comforting. It’s not your job to make the patient feel better. Focus on the person’s feelings and reflect them back.”) Yeah, right. I do that a lot. I did learn something in CPE. Yet, if there’s one thing I’ve learned from the actual practice of ministry, it’s that there’s no formula that works 100% of the time. Sometimes you gotta go with your gut. And truth-telling is always a good thing, when it can be done in a way that’s empowering.
So much for the Don’ts. Now, here’s Bruce’s list of Dos:
1. DON’T WRITE ME BACK. This is a good one. It says to the person, “I want to let you know I’m thinking about you, but I don’t want you to feel under any social obligation to respond. Save your energy for getting better!"
2. I SHOULD BE GOING NOW. Don’t overstay your welcome. Always good advice. Being there’s the most important thing, but being there doesn’t mean hanging around indefinitely.
3. WOULD YOU LIKE SOME GOSSIP? By this, he means “Change the subject. Talk about something else besides blood tests and IVs and prescriptions for a change." Yes!
4. I LOVE YOU. “It doesn’t need to be ornamented. It just needs to be real.” This is the best one of all, for sure.
There's lots of talk, this time of year, about gifts and gift-giving, but here's a gift-giving story that will warm your heart. It comes from the sports pages, of all places.
Matt Hoffman is a defensive end for the Rowan University football team, here in New Jersey. Recently he was one of three runners-up for the Gagliardi Trophy, which is given to the most outstanding football player in Division III of the NCAA. It's that Division's equivalent of the Heisman Trophy.
Matt had put himself on the National Bone Marrow Registry's list of potential stem-cell donors some time back. Last November, his number came up. Matt's blood chemistry, it seemed, was a good match for a non-Hodgkin lymphoma patient, a stranger to him, who urgently needed to undergo the transplant procedure.
The only problem was, for Matt to say yes to the request to donate meant he would have to take some powerful medicines, whose side effects would prevent him from playing in the final football game of his Junior-Year season.
The voting for prestigious sports awards like the Gagliardi Trophy is heavily dependent upon statistics. For an outstanding player like Matt Hoffman to miss even a single game is a really big deal. It can mean the difference between being the trophy recipient and being the runner-up (as Matt turned out to be).
Matt didn't hesitate. He told his coach he couldn't play that day, because he had to go into the hospital to donate stem cells. For a stranger.
A few weeks ago - in the moments before the Gagliardi Trophy awards ceremony - Matt had the opportunity to meet the man who received his stem cells. The National Bone Marrow Registry puts a one-year moratorium on sharing the names of recipients, but after that year had elapsed - and with the consent of both parties - they brought the two men together. Matt had the opportunity to meet Warren Sallach, a 59-year-old road maintenance worker from Texas, who continues to be in full remission more than a year after receiving his stem cells.
It was an emotional occasion for both of them. Matt called it "one of the best moments of my life."
I'd be hard-pressed to think of a better gift-giving story than that. Matt Hoffman may be a runner-up for the Gagliardi Trophy, but he comes in first for an even more prestigious trophy, in my book.
(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.
Last Tuesday, I went for a PET/CT scan. This is perfectly routine: I get scans at intervals, alternating between the PET/CT and a regular CT scan with contrast. It’s how Dr. Lerner and I figure out if we’re still watching and waiting, or if it’s time to take a more proactive stance.
A year or so ago, the testing interval was every 3 months. Now, the doctor has spread the schedule out to every 6 months. That’s because my lymphoma has been so lackadaisical of late – a good sign.
The scanner lives on the back of a tractor-trailer truck pulled up to a loading dock at Jersey Shore University Medical Center. It’s there a couple days a week. What hospitals it visits the other days of the week, I’m not sure.
Here’s what I recall of the experience...
I’ve been through this enough times to know exactly what to expect. Pin-prick on the finger-tip, for the instant blood test to make sure I’m not diabetic. IV needle inserted in the crook of the arm, into which the technician injects a hypodermic-full of liquid out of a thick, cylindrical, silvery-metal case (that’s lead casing, to protect the technician from the radioactive glucose solution I get to have coursing through my bloodstream for the next several hours – lucky me). The IV needle comes out right after that, then it’s 45 minutes’ R&R in a comfy lounge chair. During that time I’m instructed to sit quietly, even nap if I want. Only then am I ready for the scan.
That entails lying flat on my back, perfectly motionless, for 30-45 minutes, arms extended straight back over my head. I know from experience how the muscle-pain that develops in my arms, after 20 minutes or so of this unnatural posture, is the worst part.
Just before climbing onto the narrow table that will slide me through the machine’s donut-hole, I notice an inscription on the device: “SIEMENS Biograph 6.”
The manufacturer, of course, is Siemens, the medical-equipment giant. Biograph 6 is evidently the model name and number.
Ya gotta think of something while you’re lying on your back, trying to keep from counting the minutes, so I start musing on that word, “Biograph.” Obviously, it’s a trade name dreamed up by the Siemens marketing people. “Bio” means life, and “graph” means writing. Put the two together and the name suggests a chartful of medical data – which is, essentially, what this high-tech test produces. Makes good marketing sense.
It also calls to mind, of course, the word “biography.” Coincidentally, during the 45-minute rest period before my scan, I started reading a biography: The Most Famous Man in America: The Biography of Henry Ward Beecher, by Debby Applegate. Her book’s a fine example of the genre: a collection of facts about the famous preacher’s life, but also so much more than mere facts. The facts are presented so as to conjure up the real person, as though he could step right off the page.
That’s what a good biography does. Yet, I wonder as I lie there: What is it that a good Biograph does?
I suppose the thing that’s most important to the medical community is the way its visioning software slices and dices my body into thousands of paper-thin segments, which it then analyzes, looking for the rapidly-metabolizing tissue indicating a possible malignancy. (I don’t feel a thing while all this high-tech butchery is going on, by the way. Except for the pain from my hyper-extended upper arms, I could probably fall asleep there inside the donut-hole.)
Likewise, a biographer like Debby Applegate gathers and arranges a whole lot of facts about her subject’s life – scanning it, as it were – before sitting down at her word processor. Once she starts to write, though, her goal is not to simply pour out the unedited facts, performing the historical equivalent of a data-dump. No, the biographer’s aiming to put Henry Ward Beecher back together again, so he arises in the reader’s mind as a 3-dimensional personality.
I heard Debby give a talk about her book at the Presbyterian Historical Society Luncheon at our denomination’s General Assembly last month. She spoke of Beecher in a way that intimated he’d become very real to her. I recall her making an offhand remark about how she’d been “living with” Beecher for quite a number of years, as she researched and wrote the book.
The similarity of names makes an unlikely association in my mind to the Marx Brothers’ film, Go West, in which Chico and Harpo are walking up and down a railroad platform as Chico repeatedly calls out, “Mr. Beecher, we’re here to meet you!”
“Are you looking for John Beecher?” asks a serious-looking businessman in a suit. “I’m John Beecher.”
Chico’s eyes narrow suspiciously. “We don’t recognize you, do we, Rusty?” (Rusty is played by Harpo, who emphatically shakes his head “No.”)
“Naturally you don’t recognize me,” sniffs Beecher, officiously. “We’ve never met.”
“Then how do I know it’s you?”
Typical Marx Brothers lunacy.
Does the Siemens Biograph know it’s me? Having sliced me up into a thousand pieces (or, more precisely, into millions of little ones and zeroes), how will it put me back together again?
The technicians running the scanner couldn’t be more cordial or professional, but even so, the whole process is designed to produce a numerical output that falls far short of describing who I really am.
Following protocol, the technician checked my hospital bracelet as I came in. It was his way of answering Chico’s question from the movie: “Then how do I know it’s you?”
Yet, he doesn’t really know me. Nor will the radiologist who reads the results and reports them back to Dr. Lerner. To the inquisitive electronic eye of the Biograph, I’m just a biological system, nothing more.
There’s a famous scene in Shakespeare’s The Merchant of Venice, in which Shylock muses on the alienation he feels as a Jew, living in a Christian country:
“I am a Jew. Hath not a Jew eyes? hath not a Jew hands, organs, dimensions, senses, affections, passions? fed with the same food, hurt with the same weapons, subject to the same diseases, healed by the same means, warmed and cooled by the same winter and summer, as a Christian is? If you prick us, do we not bleed? if you tickle us, do we not laugh? if you poison us, do we not die? and if you wrong us, shall we not revenge?” [The Merchant of Venice, Act 3, Scene 1]
One of the things we cancer patients appreciate the most is when someone treats us as a real person, not a mere medical case. I’ve been fortunate to get that sort of response from Dr. Lerner and from most of the people who’ve cared for me, over the past five years or so of tests and treatments.
We’d be foolish to expect that sort of thing from the Biograph – although, as we look to our fellow human beings who wear the lab coats and the nurses’ uniforms, is it out of line for us to hope for a little personal interest in our biography?
Lori's main focus is on what not to say to friends who have cancer. It really is helpful to think ahead of time about how to use our words in helpful, healing ways.
Sometimes the thoughts that first come to mind aren't all that therapeutic for friends with cancer. They may even make life more difficult. Such comments say more about ourselves, and our anxieties, than about the other's needs.
• Don’t inadvertently blame the victims by hinting that they may not be thinking positively.
• Don’t blame the victims by asking about possible risky behaviors they may previously have engaged in, like smoking. This is an absolute no-no. (You may be wondering about it, but don't ask.)
• Don't share stories about people you've known who've had the same form of cancer, but didn't survive (Lori says she needs to hear at least five success stories to counter one such horror story).
To that one, I'd add a codicil: Don't share stories about people who had a completely different kind of cancer, thinking it will somehow be encouraging. The word "cancer" covers a vast family of diseases, making it very hard to generalize from one type to another.
So much for what not to say. Now, here are a few positive suggestions:
• For friends who may find it hard to be continually confronted by discouraging statistics, offer to help with research - but don't forward articles without first reading them through completely.
• Try not to be gloomy. Humor is therapeutic, so help your cancer-survivor friends find things to laugh about!
• Every once in a while, remind your friends you’ll be there for them, no matter what. Some survivors have the experience of losing longtime friends who simply drift away, because they can't handle the situation emotionally. It's always good to be reminded of friends who are still there for us.
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.
Today I’m reading an unusual article in Cure magazine online, "Keeping the Faith," by Kathy Latour. What’s unusual about it is that it deals with the topic of cancer and spirituality with attention to spiritual community.
I find that refreshing, because there’s lots of talk about a sort of generic spirituality when it comes to cancer survivorship. “If it makes you feel good, do it” is the all-purpose mantra. The problem with this sort of approach is that it ends up being a do-it-yourself activity, like trimming your nose-hairs or working out with a Thighmaster.
I think this individualism comes out of good old American separation-of-church-and-state thinking – something I’m in favor of when it comes to politics, but which is woefully inadequate in all but the most superficial discussions of religious faith. Take that line of thinking to its extreme, and you’ll end up like poor old President Eisenhower – who supposedly let himself be quoted saying: “Our government has no sense unless it is founded in a deeply felt religious faith, and I don’t care what it is.”
Some presidential scholars insist that’s an apocryphal remark, and it may well be – but, it catches the spirit of the age. (Eisenhower was a Presbyterian, by the way – though, if he really said that, I suppose he missed Sunday School the day they were teaching Calvin’s high conception of the church.)
In cancer support groups, “guided meditations” abound – those stress-relieving exercises that begin: “Close your eyes, pay attention to your breathing, and imagine yourself walking across a grassy field...”
Now, I can understand the appeal of that approach, to those who arrange chairs in a circle for their cancer-and-spirituality workshops. You can be Christian, Muslim, Buddhist, Jew or South Sea Islands cargo cultist, and still get something out of a guided meditation exercise. Whether the glowing figure walking towards you across that grassy field is Jesus or the Bodhisattva Maitreya makes little difference, because it’s happening in your own, private mental world. No muss, no fuss, no cross-denominational misunderstandings. Everybody leaves happy.
Outside of houses of worship, spiritual support groups are often led by people without any strong (or strongly evident) religious affiliation – the “I’m spiritual but not religious” sort of person. You’d think hospitals and agencies would seek out seasoned religious professionals – nuns who work as spiritual directors, say, or Muslim teachers of Sufi prayer – as long as they’re committed to interfaith dialogue. But, no. Charitable-organization program directors aren’t known for sticking their necks out, so they smile beneficently on psychiatric social workers with no theological background who say, “I can do that,” or on generic “interfaith ministers” holding degrees from unaccredited seminaries (or, God forbid, even internet “ordinations”).
That’s why the article I’ve been reading is so refreshing. The author, Kathy Latour, interviews Harold G. Koenig, M.D., of the Center for Spirituality, Theology and Health at Duke University – a prostate-cancer survivor himself – as he describes a discussion group he co-facilitated called “Engaging the Spirit.” It was a place “where cancer patients and survivors explored spiritual and faith questions as they traveled the cancer journey.” Knowing his group was composed of people from a variety of faith traditions, Harold began each discussion with a simple question: “How’s your spirit?”
OK, that’s a workable generic opening question, but Harold’s point is that the discussion need not remain in that level: “I learned from those who took part that no matter how someone defines his or her faith, in a group of cancer survivors there exists a common quest to understand existential questions about life and death.” When that quest is pursued through religious community, there comes an awareness that “God has a purpose for them and is in control and they don’t have to be. This is where mental health comes from.” Such a strongly-held conviction, the article continues, “frees them and reminds them that their illness can result in ‘something good.’”
From his own experience as a survivor, Harold upholds the value of “a belief system that frames your diagnosis in the context of your life and what you believe happens after life. If you have no framework to place that in, all you have left is yourself and it isn't enough. You can't carry the full load – you weren't meant to.”
A great many recent research studies of spirituality and health, Harold maintains, conclude that people who follow a particular faith tradition “need and use fewer health care services because they are healthier, more likely to have intact families to care for them, and have greater social support.”
The Rev. Isabel Docampo, associate professor of supervised ministry at Perkins School of Theology, “says her fear and depression after facing surgery for life-threatening cancer of the salivary gland came not from a crisis of faith, but from the pain and sadness that she felt from the idea she might leave her 21-year-old son, Ben, and her husband of 18 months, Scott Somers, also an ordained minister.”
“The way I have always looked at life is that it is what it is,” Isabel reflects. “Life is a struggle and God has been there for all the blessings and all the bad stuff, and God is going to be here for the cancer.”
Amen to that.
I wouldn’t want to face cancer knowing that “all I have left is myself” – nor some individualized spirituality I’d made up out of whole cloth, either. One of the great strengths of submitting oneself to the discipline of a particular religious tradition is knowing it’s not all about me, nor will it ever be so.
This little video is endearing – and not just because it features the always-amusing John Cleese as narrator. I’ve heard of India’s “laughter yoga,” but have never actually seen it before, in action.
I figure this stuff has got to be therapeutic – but, if nothing else, it looks like great fun:
I’m especially intrigued by the observation that it doesn’t seem to matter whether the laughter is forced or natural: the therapeutic benefit is the same.
Of course, as the doctor points out in the video, even if participants are forcing their laughter at first, after a few moments of looking at all those goofy faces, only a rock could keep from laughing in response.
Last night, Claire and I, along with our daughter Ania and niece Elizabeth, went to a midnight premiere of the film, Harry Potter and the Half-Blood Prince. It did not disappoint.
We’ve been fans of the Harry Potter books for some time, and have eagerly awaited each film as it’s come out.
I was struck by how many people showed up at our local multiplex (they were showing the film on at least two of their screens, possibly more). It’s a remarkable thing how many people of all ages have come to know and love these stories: enough to fill cinemas across the country till half-past three in the morning – and on a workday, at that. Judging from the comments we overheard, a great many of our fellow Potter-o-philes are very familiar indeed with minute details of J.K. Rowling’s teenage-wizarding yarn.
It’s a great thing to have a common story.
I was led to wonder how many people, in these days of secularism, feel such a passionate connection with the biblical story? Once upon a time, novelists, playwrights, screenwriters and other creative types could assume their audience could easily recognize biblical allusions. For example, I’ve been listening to a recording of Steinbeck’s great novel, East of Eden, as I drive around in the car. The book’s loaded with biblical symbolism. Were Steinbeck writing today, would he bother to tie his story so closely to archetypal biblical tales like that of Cain and Abel? Would his readers care?
The success of the Harry Potter oeuvre – and Tolkien’s Lord of the Rings before it – speaks to this secular culture’s hunger for a common story, a deeply moral tale grounded in religious sensibilities.
Every time I attend my monthly Leukemia and Lymphoma Society support group (and it’s been several months now since I’ve been there, due to schedule conflicts), I’m impressed by the power of the common story we cancer survivors share. The details, diagnoses and treatments may differ, but there’s a deep well of common experience. In a very real way, the story of my fellow group members is my story too.
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.
One of the tough realities of following cancer blogs is that, from time to time, someone you’ve come to know and respect in this strangely intimate medium dies. This is what’s happened in the “Clusterfook” blog written by Lisa, a young wife and mother who’s been dealing with ovarian cancer for several years now.
One of the last topics Lisa blogged about was what she called “power of blog” – a concept similar to power of attorney, but having to do, instead, with who would take over her blog. As she entered hospice care, she had to find someone to whom she could entrust her username and password, so as to inform the blogosphere of her death.
Her husband is not evidently much of a computer person, so she turned to a fellow blogger. On Saturday, February 28, Lisa’s friend, Karl, posted news of her death.
Just over a month ago, Lisa mused about the reactions of some readers, who said they found her blog “too depressing.” I never had that reaction, myself, as I read her words. I found Lisa consistently blunt and down-to-earth as she described her decline in health, but she seasoned those grim facts with a quirky sense of humor and a passion for living her days to the fullest.
Here are a couple of excerpts from that post of January 26:
“As heart breaking as death is, I’m doing O.K. with everything that’s happening. Do you hear any ‘woe is me?’ in my writing? Do I sound like I feel sorry for myself? Am I crying out for pity?
No, no and no.
Every day I strive for inner peace and so far I’ve found it. I consider myself one lucky chick-o-dee, perhaps I should say I’m a blessed chick-o-dee to have such calm and inner peace.
That’s not to say that I don’t cry. Crying is a release of emotion for me but I’m not crying every day. Usually I cry when having deep, heartfelt discussions with family members and friends. Those moments when we are brutally honest about how we feel about each other and say to each other the things we should be saying but usually never have the courage to say. Then the day comes when it’s too late to say what we’ve always wanted to say.
If you ask me, it’s a gift to have those opportunities right now. My advice to you is don’t wait until you are facing death to tell those dear to you how you really feel about them. Whatever is holding you back…let it go.”
In a post just prior to that one, Lisa related what it had been like to tell her 8- and 11-year-old girls (whom she calls by the pseudonyms “Cam” and “Teeny”) that she was dying:
“Telling Cam and Teeny the truth, that I’m not going to get better, was one of the most heart breaking things I’ve ever had to do. It is NOT easy to tell your children that you are dying. Listening to them cry was one of the worst things I’ve ever heard. Not being able to fix it is the worst feeling in the world....
Dude [that’s her blogging nickname for her husband] and I decided to deliver the news to the girls last Saturday afternoon, a few hours before they had to go to church. Teeny has been consistently lighting a candle for me every week and she finds a lot of comfort in going to mass with Dude. Cam doesn’t complain about going nor does she get real excited. Dude and I thought they might find some extra comfort in going to church after talking to us earlier in the afternoon.
I’ve been too sick to go to mass for a while so Dude takes the girls by himself. He said that each girl was snuggled up as close and as tight to his side as they could be during mass. And of course, Teeny lit a candle as she always does. When she got home she told me that she still believes in the hope that I’m going to get better. God, how I wish that little ray of sunshine was right....
My kids are strong but they have been dealing with cancer in their lives for five years. I hope the lessons they’ve learned and continue to learn make them stronger and don’t scar them. Although how do you tell an 8 and 11 year old there’s a lesson to be learned when their mom dies?
Well, I’ve got them surrounded by great people and a good support system that I hope pulls through for them. That’s how you do it.”
Lisa’s blog has a subtitle: “It Is What It Is.” I can remember repeating that phrase on numerous occasions, myself, during the acute phase of my illness. I can remember taking an odd sort of comfort in it. There’s something strangely liberating about shedding all the myriad worries and distractions of everyday life in order to focus on one, true thing: living as well as you can.
One of the reasons “It is what it is” is comforting is that it reflects a fundamental truth: a cancer diagnosis is a lot scarier through the windshield than it is in the rear-view mirror. Eventually you adapt, your family adapts, your friends adapt, as together you learn to face the future, whatever it may hold. A few people around us are never able to do that, and withdraw – but most manage to make the transition eventually.
Yes, it is what it is. And, sometimes, it can even be beautiful – like Lisa’s indomitable spirit. Truly, that’s the “power of blog.” Prayers and good wishes go out to all who love Lisa and miss her.
