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. In 2011, an unrelated thyroid cancer led to a total thyroidectomy and successful radiation treatment. 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.
With all the ecological concern these days, pipelines don’t have an especially good name. Surely they’re a mixed blessing. They deliver all sort of things we can use, but they can pose terrible risks to the environment.
Here’s one pipeline whose value everyone can agree on. It’s the pharmaceutical research pipeline. I saw an article today directing me to an online brochure detailing just how many new medicines are in the pipeline for blood cancers.
From the brochure: “Pharmaceutical research companies are developing 241 medicines for blood cancers — leukemia, lymphoma and myeloma. This report lists medicines in human clinical trials or under review by the U.S. Food and Drug Administration (FDA). The medicines in development include 98 for lymphoma, including Hodgkin and non-Hodgkin lymphoma, which affect nearly 80,000 Americans each year.”
The brochure includes this chart (click to enlarge), which details the complex process each of these drugs must go through before they’re ready for prime time:
Most don’t make it: not even to clinical trials. Out of many thousands of promising compounds, only about 250 get real scrutiny as possible clinical-trial material. Of these, only five get tried out on real, live patients.
Four out of these five drugs turn out to be ineffective, or deliver side effects that are just too intolerable. That leaves just one chemical compound out of 5,000 to 10,000 that makes it through clinical trials into production.
This, of course, is why new drugs cost so much. The companies have to set aside enough money to pay for all those failed experiments. Patents allow the companies exclusive manufacturing rights for only a limited number of years. Once that time period has elapsed, the generic manufacturers start selling their own inexpensive knock-offs (and, of course, their research and development cost are negligible). The original manufacturers drop their prices to compete, and begin looking to whatever new formula is next coming down the pipeline.
It’s a complicated system. I wouldn’t want to be the accountant who figures out the financial risk and tells the company executives how much they need to charge. But I am glad to know this process is taking place — and that the outlook for new blood-cancer medications is so promising.
With every new drug that emerges from the pipeline, my prospects for living out a normal lifespan, even with my lymphoma — now quiescent, thank God — look better and better.
From time to time, I take advantage of educational conference-call opportunities that are made available by some of the leading cancer research and patient-support organizations. This afternoon, I listened to one that featured Dr. Owen O’Connor of Columbia University and Dr. Bruce Cheson of Georgetown University, both of them lymphoma specialists.
I’ve heard Dr. Cheson numerous times in the past (that's him to the left). Dr. O’Connor was a new name to me (see below for his photo).
Often, my chief take-away after listening to such programs is to feel reassured that I’m pretty much on top of the subject of recent advances in lymphoma treatments. That, in itself, is encouraging.
Today, though, I actually heard a few things I hadn’t heard before. Or, if I did hear them before, they didn’t register with me.
The first has to do with the vexed question of what sub-type of NHL I actually have. My initial diagnosis was for small B-cell lymphoma, which is usually understood to be an indolent form of the disease (as is the relatively common follicular lymphoma). My second-opinion from a pathologist at Memorial Sloan-Kettering in New York, however, identified a significant number of large cells (more dangerous, but also more susceptible to curative treatment), which set me out on the chemotherapy journey on which I embarked in early 2006. The new diagnosis at the time was “diffuse mixed large and small B-cell.”
As a result, when I attend lymphoma educational conferences where they ask participants with B-cell NHL to break out into workshop groups, some follicular and others large B-cell, I never quite know where to go.
Today I heard Dr. O’Connor speak of the fact that, when it comes to diagnosis, there is often a significant gray area between high-grade (somewhat more aggressive) follicular lymphoma and diffuse large B-cell. He also said there are well-documented examples of “histologic transformation of follicular lymphoma,” which means that a patient’s disease actually changes fro one form to another.
I’m not saying that happened to me, necessarily. It’s just that it highlights how the pathology reports that doctors often present to patients with such certainty are sometimes as much an art as a science. Dr. O’Connor pointed out that, in the case of some patients, if you were to present the same pathology report to ten different pathologists, as many as three or four of them may differ from the others with respect to grading of the disease.
That would put me squarely in the gray area, it would seem. It also means I’m likely always to have difficulty deciding which workshop group to join.
Generally, the news continues to be encouraging. Both doctors emphasized that, in the world of B-cell lymphoma, there are a great many treatments to choose from in the event of relapse. Here’s hoping I’ll never need them, but in case I do someday, it’s good to know there’s a choice.
They also made me feel like the R-CHOP treatment — harsh as it was — was, indeed, the most appropriate choice for me at the time. One of the callers in the question-and-answer session was wondering whether it’s best for a newly-diagnosed follicular lymphoma patient to start off with Rituxan only, rather than more traditional chemo agents. Dr. Cheson was quite clear that, the younger the patient is, the more important it is — all things being equal — to start with the harsher treatment first. Not only are the benefits likely to be longer-lasting with traditional chemo, but older patients are more likely to have difficulty tolerating it. So, it’s better to use it while you can, as a primary rather than a refractory treatment, while you’re relatively young.
I’ve often wondered, as well — especially as I speak to other patients whose disease is quiescent and who are pursuing long-term maintenance Rituxan treatments — whether watchful waiting continues to be the best course of action. Dr. Cheson put my mind at ease in that regard, by repeating news of some research studies I’ve already heard about. Specifically, these studies have found that, while maintenance Rituxan treatments may cause longer remissions, when everything is said and done, the overall survival rates of those who have had these monthly IV drips is no better than those who have not.
Anyway, it was a productive and reassuring hour to spend — even considering the ambiguity that goes along with living in the gray area. Thanks to the good folks at CancerCare for putting on such a useful program!
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.)
Because noon-to-three comprises the biblical hours of the crucifixion, this year we simply opened the church for prayer during those hours. It’s our last nod to the Good Friday afternoon worship tradition. I wasn’t in the Sanctuary the whole time, but to the best of my knowledge no one took advantage of the opportunity.
That’s not a huge surprise. The contemplative tradition feels foreign to many Presbyterians. We tend to be a pragmatic bunch — not the sort of crowd who flock to an opportunity to gather for silent prayer.
Besides, to a culture that increasingly worships youth and health with a zeal bordering on idolatry, the figure of a tortured man gasping out his last breath on a cross seems the antithesis of any sort of victory.
In past years, at three p.m., we would conclude the community service by ringing the church bell thirty-three times – symbolic of the years of Jesus’ life. Although the Sanctuary was empty, I went in there today anyway, took hold of the bell rope, and slowly rang it. Thirty-three times feels like an eternity, when you space the rings out with a few seconds in between each one.
Outside, through the stained-glass, I could hear the sound of traffic and glimpse the wraithlike shadows of passing cars: people on their way to who knows where, very likely oblivious to the tradition that three o’clock was the hour of Jesus’ death.
If they noticed the sounding of the bell at all, would they realize what it was about?
I’ve always found the ringing of church bells to be significant in ways beyond words. In the year of undergraduate study I spent in Oxford, I used to look forward to the time each Sunday evening when all the change-bell ringers from the parish churches and college chapels, by common agreement, simultaneously practiced their trade. It was a glorious cacophony I will never forget, a mellifluous, rippling series of sound waves washing over that city of spires.
In years past, church bells functioned as many towns’ public-notification system. Like the Emergency Broadcast System that interrupts radio and TV programming every once in a while for a test, church bells fulfilled that function in years gone by. Public joys, civic celebrations, urgent alarms: all were heralded by the ringing of the steeple bell. In the era before loudspeakers and sirens, it was pretty much the loudest, most sonorous thing around.
That function has long since been supplanted by electronic systems of various kinds. Our local volunteer-firehouse and first-aid sirens are way louder than any church bell in town. In the days following Hurricane Sandy, the local Office of Emergency Management sent out daily information bulletins via telephone robocall. A viral message on Facebook, as we all know, can reach millions in the space of a few hours, if its recipients are keen to propagate it through their slacktivist mouse-clicks.
All that made me feel like a bit of a dinosaur, yanking on that bell-rope thirty-three times in an empty sanctuary, beside a street filled with drivers on their way to who-knows-what sort of Easter holiday sale. (I’ve actually seen a few ads for Good Friday sales in recent years. Now there’s a sacrilegious cluelessness that beggars the imagination!)
American hyper-individualism has been on the rise for generations. Has it reached its spiritual apogee in today’s bland acceptance of "Have It Your Way" McReligion as the national creed?
“Cast off the ties that bound Our hearts in Christian love: The fellowship of kindred minds: To that we give the shove.”
(I just came up with that. Inspired, or what?)
Pulling on that bell rope, I had a odd mental association with the time of my cancer treatment. That’s such an isolating experience. When you mention to someone, “I’ve got cancer,” you can see from the look in their eyes — the oil-and-water mixture of sympathy and fear — that you’re all on your ownsome when it comes to empathy (unless, of course they happen to be survivors as well). As for other neighbors, if they’re at all adept emotionally, they’ll be quick to share sympathy: but truly entering into the experience is — understandably — beyond them.
The bell-tone reverberates, over the parade of preoccupied passersby. What can we do but sound it anyway, hopeful that, somewhere, someone looks up and displays a half-smile of recognition?
It continues to be a difficult for me to make timely entries on this blog, because of the ways my life has changed since Hurricane Sandy. Our home is intact, as is the church building, but our community is badly damaged. The whole focus of my ministry has changed, with a heavier emphasis on crisis intervention and pastoral care, as members of the congregation endure the frustration of insurance claims and FEMA grant applications.
The focus of the church’s mission has changed as well. We’ve recently been named a Volunteer Village by Presbyterian Disaster Assistance, housing groups of up to 36 volunteer recovery workers, one week at a time, in our Education Annex (which is across the driveway from the Manse).
I wish entries could be more frequent. It’s not for lack of things to write about. It’s simply about finding the time to sit down at the keyboard and do it.
I hope regular readers will bear with me. Things will get better eventually.
I’d like to reflect today on what cancer has taught me about dealing with a disaster. The two may seem at first to be unrelated — an extended period of cancer treatment, and a natural disaster bringing damage from winds and flooding — but in fact there are a great deal of similarities.
In both cases, there was a period of preparation. It was several months from the day Dr. Cheli handed me a medical test order with the words “Suspect lymphoma” written on it to the actual day when Dr. Lerner confirmed the G.P.’s suspicion was true. Sandy also came on kind of slow: there were several long days of anxiously monitoring the Weather Channel and wondering whether the storm track would intersect with our little piece of the Jersey Shore.
When each of those disasters struck, I was left reeling. The slowly-building sense of dread climaxed in a scenario that, if not exactly worst-case, was pretty far along that spectrum
After my diagnosis, my preeminent role in life became that of cancer patient. I threw myself into research, finding out as much about lymphoma as I could. The single most important items on my calendar became doctors’ appointments, blood tests, biopsies and medical scans.
After Sandy, my ministry became that of “disaster pastor,” focusing on needs more urgent and primal than the typical woes of middle-class suburbanites. At the church, our focus shifted to basic human needs like feeding people and providing temporary shelter. (We’d typically addressed those in the past by soliciting financial contributions for mission agencies; now, the needs were at our doorstep and our response person-to-person.) We handed out clean-up kits. I learned what brand of mold-remediation chemical to recommend. I became familiar with the intricacies of how to register for FEMA emergency aid, so I could urge our people not to miss the deadlines. When the local stores sold out of cardboard moving boxes and plastic storage bins — for people vacating flood-damaged homes to pack up their possessions), we became a distribution center for such items driven in by friends from elsewhere.
I never imagined my ministry would ever focus on problems like where to find plastic storage bins. Yet, when that appeared to be the work Christ was calling me to do, I did it.
In odd way, one I could never have predicted, my experience as a cancer survivor prepared me to become a hurricane survivor.
The disaster itself was over in a comparatively short time. In the case of my cancer diagnosis, it was a single afternoon in the doctor’s office, learning of my diagnosis. In the case of Sandy, it was the 24-hour period of high winds and torrential rain.
An intense period of confusion and numbing dread followed. In those days after my diagnosis, I grappled with the possibility that I could die soon. In the 5 or 6 days after Sandy, we were surrounded by a different kind of darkness, waiting for the power to come back on.
In the days after diagnosis, I felt very much alone, imagining nobody knew the troubles I was seeing — at least those relating to my role as pastor. In the days after Sandy, we were cut off from most forms of communication, except what sporadic text messages and internet access I could engineer on my iPhone.
Ever since Sandy, there has been far more important work to do than I could possibly accomplish. I’ve ruthlessly practiced to-do list triage, letting some urgent but less-important items go for a while — some of them for good..
Again, I went through something similar as I pursued cancer treatment in the winter and spring of 2006. Recovery became Job One. Every other task receded to a lower tier of priority.
Both experiences gave me a keener nose for trivia, giving me permission to jettison mere busy-work with few feelings of regret.
Resting up in those days between chemo treatments, I never imagined I was in training for a very different challenge. But I was.
The Lord works in mysterious ways. Turns out, cancer treatment bestowed some hard-to-discern spiritual gifts that prepared me for an extended period of hurricane recovery.
Here’s a story that makes me feel good — especially so, since I could potentially be on the receiving end of this sort of generosity someday.
These words were spoken by William Hudson, a CNN producer, after making a bone-marrow donation to save the life of a total stranger:
“I knew that no matter how much time and money I did or did not donate to nonprofits and charities doing important work, this was different. Here was a patient with a blood cancer whose particular immune system resembled my own. Turns out I, among potentially everyone in the world, was in the best position to save her life. It’s an awesome responsibility and opportunity.”
The most important thing, in making this sort of life-saving difference for someone else, is to join the national bone marrow registry. As Mr. Hudson explains it:
“Joining is a small time investment — all it takes is a few cotton swabs of saliva — but understandably seems to have no payoff. The chances of ever becoming a donor are only about 1 in 540.... I was on the registry for five years before I received a potential donor letter.”
According to the article, should a member of the network be selected as a donor, there are two ways the necessary stem cells can be harvested: an actual bone-marrow harvest (a minor surgical procedure), or the much easier peripheral blood stem cell donation, or PBSC — which is not much more difficult than taking a pill for five days, then donating blood. Procedures have improved to such a degree in recent years that, for most adult recipients, either procedure works well. In the case of some children, an actual bone-marrow donation is preferred.
I’ve had the preliminary tissue-typing done at the Hackensack University Medical Center so that, should my indolent lymphoma flare up in a dangerous way, I could receive a bone-marrow donation. I’ve struck out with both my brothers — both were tested, but were not good matches for me — so in that event I’d be dependent on an anonymous donor. According to the best medical science today, the only potentially curative treatment for the sort of lymphoma I have is a transplant (although at this time, when my disease appears to be dormant, the potential side effects outweigh the advantage of seeking a transplant).
Becoming a donor — even joining the registry — is a beautiful thing. To find out more about joining the registry, go to marrow.org.
If you’re a cancer patient who has received chemo treatments in your doctor’s office, here’s an article that may give you pause. It’s a Reuters article by Andrew M. Seaman, dated yesterday: “Some cancer docs say their income tied to treatments.”
As the article makes clear, it’s not a question of whether oncologists actually do make more money administering treatments in their offices (as opposed to referring patients to a hospital’s outpatient clinic). The question is whether the doctors THINK they do.
If they do think that’s the case, then there’s the potential for a disturbing conflict of interest.
Here’s the $50,000 (or more) question: “In the case of oncologists who also run chemo clinics, what takes first priority in their minds — the medical necessity of a given round of treatment or their potential to realize a higher profit?”
I’d like to think most doctors are above such venal considerations. Yet, I’m also enough of a Calvinist to believe no one is immune to that sort of temptation. Better to eliminate the temptation, I say, than to count on human nature to always pursue the most ethical course, when there are pecuniary considerations at work.
Speaking for myself, I have to say I still have great personal confidence in Dr. Lerner, my oncologist, even though he and his colleagues in the medical group do own a chemo clinic (where I did, in fact, receive my treatments). That’s because of a certain experience I've had. When, just after my R-CHOP chemo treatments had ended, the question came up about the advisability of maintenance Rituxan treatments in my case, Dr. Lerner recommended against it. He said, at the time, that in his view the body of research was still not there to declare that this was, indeed, the right thing to do.
I do realize it’s now over 6 years later, and the results of some more recent clinical trials would perhaps lead my doctor to give different advice today, but the important thing, to me, is that he declined on medical grounds to recommend that expensive treatment that would have put more profits in his pocket.
It’s these very same maintenance Rituxan treatments, that can continue monthly for many years after initial chemo treatment, that some doctors refer to as their “Rituxan retirement plan.”
The historic pattern, with most medications, is for doctors to write a prescription and for a pharmacy to fill it. Unless the doctor also happens to own the pharmacy, there’s no conflict of interest. When doctors own outpatient chemo clinics, however, it’s as though the doctor owns the pharmacy.
The same is true for the “outpatient surgi-centers” that have sprung up all over the place — which are typically owned by the very same doctors who refer patients to them (and, in most cases, perform the surgeries as well). They’re essentially little freestanding, specialized operating-and-recovery rooms. They make it possible for patients to undergo outpatient surgery, complete with general anesthesia, without ever setting foot in a hospital. (An ambulance is permanently parked out back, to whisk patients to the hospital, should complications develop.)
The problem — for non-profit hospitals, anyway — is that the for-profit surgi-centers siphon off many of the operations that typically bring in more money than they cost to perform. This leads to underused hospital operating-rooms and a corresponding decline in hospital income. The hospitals, then, are stuck with paying all the costs of operations and outpatient treatments for uninsured or underinsured patients, who would never make it through the door of the doctor-owned facilities.
At the very least, I think you’ll agree: this is something worth pondering, right?
Here's an encouraging article about developments in treatment for Follicular Lymphoma - a few years old now (2008), though I hadn't seen it before. I may or may not have that type of NHL now - my biopsy tissue samples were pretty small, so the docs can't say for sure whether the indolent lymphoma I now have, post-chemo, is the Follicular type, or some other variety of small B-cell lymphoma.
In any event, I take this to be positive news for my situation:
Natural History of Follicular Lymphoma Changing for the Better
CARLSON, ROBERT H.
LUGANO, Switzerland-The prognosis for patients with follicular lymphoma has greatly improved over the past decade, and oncologists/hematologists should tell their patients to be optimistic. So said James O. Armitage, MD, in his John Ultmann Memorial Lecture here at the 10th International conference on Malignant Lymphoma.
Improved treatments are the main reason for increased survival, particularly immunotherapy, said Dr. Armitage, Professor of Internal Medicine in the Section of Hematology/Oncology at the University of Nebraska Medical Center. Our treatments are getting better, and there is a subset of patients, albeit small today, who survive for a very long time free of the disease. Patients in that subset may actually be cured of follicular lymphoma, and we can hope with our patients that they might be in that group.
Dr. Armitage's presentation took the audience through studies and analyses all pointing to the fact that the natural history of the disease is changing for the better.
He concluded that clinicians should take advantage of the new treatments: "Based on data I showed today, a new patient should always be treated with some form of passive immune therapy, if the drug is available. For most patients that would be rituximab, because there is really striking data that that improves survival."
He added that some data show that rituximab should be included in the initial therapy for follicular lymphoma, but he said that issue is not completely resolved.Despite the fact that we know much more about this disease than we did in the past, there is still very much to be learned, and we should encourage our patients whenever possible to participate in clinical studies.Dr. Armitage said many oncologists believe follicular lymphoma to be a fairly simple disease to diagnose and treat. Survival is long, and patients respond to many different therapies and continue to respond after relapse unlike in many other malignancies.
We’ve been having quite an experience around here, living through Hurricane Sandy. We live six blocks from the Atlantic Ocean in Point Pleasant Beach, New Jersey. We were never evacuated, and the storm surge never reached our house, but those to the east of us didn’t fare nearly so well. The area east of the NJ Transit railroad tracks (just two blocks from our house) was evacuated. Not much further along the road was the high-water mark. Not too much further than that, there was three or four feet of water inside the houses.
No one remembers a storm this bad. Not even Vince, a 94-year-old member of our church. I asked him, and he was very clear in confirming that this is the worst he’s ever seen.
We had no electricity for five nights. Some in our community still haven’t gotten it back.
Fortunately, I invested in a battery pack for the Bi-Pap machine I use to sleep at night (for my obstructive sleep apnea). I’d purchased a small generator after Hurricane Irene, and that was sufficient to charge the battery pack and our cell phones, as well as run a mini-refrigerator.
One aspect of the storm that didn’t occur to me until much later was how Dr. Lerner’s oncology practice fared. He and his colleagues run a chemo suite out of their office. No power means no IV drips, and with no IV drips (and no power to run the refrigerators where certain medicines are kept), there are no chemo treatments.
I knew something was up on my most recent follow-up visit, when I noticed the office staff still had their Halloween decorations up. Holiday decorations are a big deal at the Atlantic Oncology/Hematology office. I suppose it’s something the nurses and technicians do to try to boost patient morale.
I was in the office on November 9. That’s more than a week after Halloween. The fact that the staff left the decorations up for so long is a sure sign that they’d been preoccupied with much weightier matters.
I confirmed the same when I got in to see the doctor. I asked Dr. Lerner how they’d managed, and he confirmed that it was pretty chaotic. Some of the sicker patients under the group’s care they had admitted into the hospital. Others simply had to miss their chemo treatments for nearly a week — not a good situation, but with the power failures so widespread, there was nowhere else (except the hospital) where those patients could have been taken, in order to stay on their treatment schedule.
That’s something folks rarely think about when making the decision about where to receive their chemo treatments. Hospitals have emergency generators, but I’m not sure if the outpatient chemo suite rates that jolt of extra power.
Just a few days ago I attended an educational event sponsored by the Leukemia and Lymphoma Society. The organizers of this evening conference asked me to participate in a panel discussion on survivorship issues.
I was struck, as I sat down to dinner with my fellow cancer survivors, that no one was talking about Hurricane Sandy — even though it had been just about the only topic of discussion everywhere else. It seemed ironic to view a discussion about cancer to be less anxiety-ridden than one about cancer.
There’s an instant communion when two cancer survivors come together. Once we share our diagnoses and staging with one another, and possibly a little bit of the story of how we were diagnosed we just know we’re simpatico.
The hurricane wasn’t far from my mind, though, as I briefly shared the story of my experiences. I told my fellow survivors and their families that the experience of diagnosis is not unlike that of living through a hurricane.
It actually takes quite a while for most people to be diagnosed for certain. In my case, it was about two months since my first suspicious-looking ultrasound and the sit-down in Dr. Lerner’s office, when he informed Claire and me that I have cancer. In between, there were various scans, then minor surgery to obtain the biopsy samples, then a week or so while we waited for the pathologist to analyze the results.
In the case of a hurricane, there’s also a whole lot of waiting beforehand. Everyone knows the storm is coming, but most of us take our time about preparing for that eventuality. Denial is often a factor.
As the hurricane barrels along the coast, getting closer by the hour, everyone nervously awaits each test result, each piece of information, that can she some light on the situation.
That is, until all the lights go out. The darkness can seem interminable under those conditions. In the darkness there is chaos and confusion and a group of people rapidly scrambling to get back in touch with the only reality they’ve ever known. Yet, that reality never returns. Because the new normal is the order of the day.
As we lived through those days without electrical power, that was our new normal. We adapted. We did what had to be done. We survived.
A cancer diagnosis is a perfect storm. I’m living testimony that there is plenty of life on the other side of that life-changing experience
Today, I run across an obituary for a true cancer treatment pioneer, Dr. E. Donnall Thomas, who died at age 92.
I’d never heard of Dr. Thomas till I read his obituary, but I’ve certainly heard of the procedure he perfected: the bone-marrow transplant. He shared the 1990 Nobel Prize in Medicine for this work.
His obituary in today’s New York Times includes this:
“When Dr. Thomas began his research in the late 1950s, bone marrow transplants were seen as a frightening last resort. Patients suffered dangerous complications from the procedure, and survival rates were grim. The patient’s immune system would either destroy the transplanted marrow as foreign, or the transplanted marrow, which contains immune system cells, would destroy the patient's lungs, kidneys and other organs.
The only successes were in identical twins because their tissue types matched.
Many physicians abandoned the approach, believing that bone marrow transplantation would never be safe enough to be practical. Dr. Thomas persevered, despite numerous failures and the criticism that he was exposing his patients to undue risks....”
Dr. Thomas’ story reminds us of how difficult cutting-edge cancer research can be. Sometimes – as was his experience – repeated setbacks lead some researchers to give up on a specific strategy. In such an event, only the truly committed remain in the game.
It takes a certain mix of confidence, stubbornness, and gutsy perseverance to continue to tweak the experimental treatment protocols until obstacles are finally overcome and success is achieved.
Before gladiatorial contests in the ancient Roman coliseum, the equivalent of playing the national anthem was for the combatants to stand before the Emperor and say “We who are about to die salute you.”
There are a great many cancer survivors who could very well bid farewell to Dr. Thomas with a slight variation on that theme: “We who are not about to die salute you.”
A big thank-you to all who persist in the field of cancer research, despite setbacks!
“We all make mistakes, and a humane government tries to compensate for our misjudgments. That's why highways have guardrails, why drivers must wear seat belts, why police officers pull over speeders, why we have fire codes. In other modern countries, Scott would have been insured, and his cancer would have been much more likely to be detected in time for effective treatment. Is that a nanny state? No, it's a civilized one.”
The writer is the New York Times’ Nicholas Kristof. His subject is his college roommate, Scott, who just died of too-late-diagnosed prostate cancer.
The reason Scott waited so long to go to the doctor? Lack of insurance.
The reason he didn’t have insurance? Because he was between jobs, and couldn’t afford to buy insurance on the open market. As Scott himself wrote:
“I didn't buy health insurance because I knew it would be really expensive in the individual policy market, because many of the people in this market are high risk. I would have bought insurance if there had been any kind of fair-risk pooling.”
I know other people who could tell similar stories. The one that comes most clearly to mind is a fortysomething single mother of 3, who discovered a lump, figured it was probably cancer, but didn’t go to the doctor because she was sure that, if a cancer diagnosis ever got recorded in her medical file, no company would be willing to insure her, ever again. Instead, she immediately took steps to get into an employment situation with benefits, but that took a while.
By the time she finally did get back into a job with medical insurance a few months later, and saw a doctor, her unusually aggressive cancer had progressed much farther than she’d ever imagined.
The doctors are trying every desperate measure they can think of, but the bottom line is, she probably doesn’t have long to live. With an earlier diagnosis, things could have turned out differently.
She told me later she’d known she was gambling with her life. If she’d had one of the slower-moving cancers, she probably would have won the crapshoot. She would have had her cake and eaten it, too — avoiding utter financial destitution and getting reasonably timely and successful treatment, besides. She just didn’t bank on her odds being as bad as they were.
She was thinking about being able to afford college for her kids, when she should have been thinking about her own survival.
Not the wisest decision, in retrospect. But, as Nick Kristof points out, how on earth can a civilized society expect a profoundly frightened person who’s just discovered a suspicious lump and has no experience dealing with cancer, to make a cool, calm, balanced and wholly rational cost-benefit analysis?
This is why the American Cancer Society now considers lack of insurance to be a risk factor for cancer. Just like cigarette smoking and working in an asbestos factory.
This is why those who are clamoring for the repeal of Obamacare are either deeply immoral individuals, or are deluded in thinking there is no moral dimension to this issue.
It’s a moral issue precisely because, if Obamacare is repealed, people like these two individuals will die needlessly.
What we really need is national, single-payer health insurance for everyone. Just drop the qualifying age for Medicare to zero. It’s as simple as that. And if Grover Norquist doesn’t like the tax increase that will be necessary to pay for it, patriotic Americans ought to shun him like the corrupt political boss he is.
Obamacare doesn’t go nearly far enough. But for now, it’s all we’ve got.
When I saw a Huffington Post article by an Episcopal priest titled “Thank You, God, For Cancer,” of course I had to read it. I discovered something of a kindred spirt: a fellow pastor like myself, who’s also a cancer survivor — and who, like me, found the cancer experience to have been formative in some ways she never could have envisioned.
“Because of cancer I learned lessons I didn't know I needed to learn. Because of cancer I discovered a depth of love, faith and gratitude I never knew existed. Because of cancer, I learned that bad news is best handled when infused with the Good News. The Good News of Faith, the Good News of Love, the Good News of Gratitude.”
Not that her journey was easy:
“Cancer is not for sissies. Cancer is not fun. Cancer stinks. But through the grace of God and the power of prayer and the faith of a community, cancer made me a better priest, a better pastor, a better person.”
Mostly, the note she sounds, this side of the acute treatment phase of her disease, is that of gratitude. Thank you, God, for having world-class treatment facilities close at hand. Thank you for doctors who know what they’re doing. Thank you for supportive family, community, church.
“Thank you” is the message I sound as well. Not “Thank you that I got it,” but “Thank you that the experience has been such a powerful — although stern — teacher for me.”
I saw an exchange on Facebook this morning about a much-publicized case from a year ago, about a homeless woman named Anna Brown. She died in jail immediately after refusing to leave a hospital emergency room near St. Louis, Missouri, where she had gone seeking treatment for a pain in her ankle. It turned out she had a case of deep-vein thrombosis. The blood clot in her lower leg - which could have been identified by a simple ultrasound test the hospital didn't give her - broke off, made its way to her lungs, and led to an agonizing, painful death on the floor of a jail cell. Then, she was taken back to that same emergency room, where she was pronounced dead.
The graphic video of her death was captured on a jail-cell security camera, and subsequently publicized by the St. Louis Post-Dispatch newspaper.
The video consists of four segments. First is from a hospital security camera, showing Ms. Brown on a gurney, awaiting transportation out of the hospital. Second is some footage from inside a police car, showing her complaining of pain and asking for a wheelchair that evidently isn't available, then the police officer and a jail employee carrying her from the car. Third is from a camera in her jail cell, showing her being carried into the cell, moaning in pain, then being left on the floor - right next to a bed the corrections officers didn't even lift her onto. Fourth is a brief conversation, after her body had been removed, between the Richmond Heights, Missouri fire chief and a corrections officer, explaining that the reason the hospital staff had sent her to the jail was because they thought hers was a case of drug abuse.
No doubt, Anna Brown had a lot of problems. Her home was destroyed by a tornado, she lost her job in a fast-food restaurant and her two children were given over into their grandmother's care under the condition that Anna not live with them. It may well have been that she had some history of mental illness and/or drug abuse. Yet, the bottom line is that she was a human being, who presented herself at a hospital emergency room in pain, refused to leave after the hospital declined to treat her, and subsequently was physically carried to the floor of a jail cell where she died. Many have already commented on how her story is a case study of how our dysfunctional healthcare system fails the most vulnerable in our society.
Now, here's the greatest irony of all. The Richmond Heights, Missouri hospital that refused to treat Ms. Brown, St. Mary's Health Center, is a Roman Catholic institution, sponsored by the Franciscan Sisters of Mary. The mission statement on the hospital's web page reads as follows:
"Through our exceptional health care services, we reveal the healing presence of God."
About the non-profit holding company that manages this and seven other hospitals, SSM Health Care - St. Louis, the website says:
"In accordance with the philosophy of the Franciscan Sisters of Mary,
we value the sacredness and dignity of each person.
Therefore, we find these five values consistent
with both our heritage and ministerial priorities:
This is not only a Roman Catholic hospital, but a Franciscan hospital. It's owned by one of the orders in the tradition of St. Francis and St. Clare, whose mission is specifically focused on sacrificial caring for what Jesus calls "the least of these."
Obviously, Ms. Brown's case is a massive failure of both the healthcare and the law-enforcement systems. Her death has touched off another round in the debate about single-payer national healthcare. It points out how the economics of our present system lead to sick people being neglected, even forcing religiously-based hospitals to join together in massive holding companies, like SSM Health Care, where they lose sight of their mission.
But, some will counter, a national health system would result in an even bigger conglomerate, where patients would be treated even less personally - wouldn't it?
Not true - at least not for the needy among us - as borne out by this testimony from a woman named Rebecca, who has personal experience living under Britain's National Health System. She shared it on Facebook, commenting on a posting by Jean, a minister friend of mine, about Ms. Brown's case:
There is very little overcrowding in the A&E (what the UK calls the ER) because people have regular access to a GP. From what I understand, a lot of the overcrowding in ERs is due to people going to the ER because by law they have to be seen, wheras a GP can turn you away if you do not have insurance. In the UK, everyone has insurance through the NHS - even an immigrant like me. The NHS, contrary to popular belief isn't solely funded through paycheque tax deductions. A Good portion is funded through sales tax (VAT in the UK), so everyone contributes something to it regardless of their employment status. The NHS also has a service called the NHS Direct which can put you in touch with a nurse 24 hours a day to answer any questions you have. This nurse will then help you determine if you need to go to A&E, if it's safe to wait until morning to call your regular GP, or if you should make an appointment with the after hours/on call GP. All of this is done free of charge, inluding seeing a GP at 2 in the morning or speaking to a nurse at 5. When I was recently on holiday (vacation) in Wales, I needed to use the NHS direct service when I fell ill (got sick, sorry. My vocabulary has shifted largely to UK English!) and they were able to get me an appointment at a local GP. I was diagnosed with Type 2 Diabetes this past March after having blood work done for something unrelated. Since then, I have had three further blood glucose tests, seen a diabetic specialist nurse, a dietician, a diabetic eye specialist, a podiatrist, and I have an appointment with a diabetic ob/gyn speciaist at the end of this month. Would any of this have happened if I were still in the US? Probably not, unless I had loads of money to pay for all the specialists. The NHS saved my father-in-law's life when he needed a kidney transplant 6 years ago and his kidney was donated by my mother-in-law. My husband's little brother had Leukaemia in the late 70s/early 80s. My in-laws would have been unable to pay for the level of care that he needed, but the NHS was there and his little brother beat cancer, but sadly died after contracting pnemonia due to his weakened immune system. My husband's grandmother was in hospital for 6 months before her death, and instead of being worried over who was going to pay the hospital bills, our family was able to celebrate her life. Grandad is still going strong at 95 thanks to his NHS care, which includes a carer who comes to his house daily to assist with dressing, bathing, and other daily functions he is unable to do for himself. By coming to his house it enables him to remain at home instead of a care home and has undoubtedly contributed to his longevity. Oh, and if you're worried about not being seen right away because of the "long waits", you don't have to. The NHS operates on a priority system based on needs, not when you get put in the queue. You also can purchase US-style private insurance and see private doctors and specialists sooner if you really don't want to wait. In the US, young women pay out anywhere from $20 to $60 per month for birth control. In the UK, birth control is free for all, including visitors. And if you do get pregnant, all your needs will get taken care of by the NHS and you will be assigned a midwife, who will visit you in your home after the baby is born for the first 6 months of its life to prevent the baby from picking up germs at the GP office. Suffice it to say, I love the NHS.
Now, here's what my friend Jean writes, in response:
Thanks, Rebecca, for setting the record straight. I think most Americans have an irrational fear of socialized medicine based on hearsay and propaganda by our pharma/medical industrial complex. The truth is socialized medicine provides better care at lower cost. When people say we have the best health care system in the world they are really talking about the most advanced procedures that the vast majority of people in this country don't have access to or can't afford. There is absolutely no excuse for a woman with a blood clot to be forcibly removed from the ER because they will not do the medical test that would confirm her suspicion that she was seriously ill. That would never happen in a state with socialized medicine. I also believe we need to have a serious conversation about how we unnaturally prolong death long past the time tests have shown that treatment is futile. It is crazy how those who want to get medical care can't and those who have money can do whatever they want regardless of the cost/benefit. Now I'll be accused of promoting "death panels." I've told my children I don't want their inheritance wasted on prolonging my death if I have a terminal disease. I've held hands too many times with those who have gone down that road and it is not for me!
In all the frenzied political debate about so-called "socialized medicine," there are many falsehoods promulgated about the alleged poor quality of care in all the other advanced democracies - like the U.K., Canada, France, Germany and Japan - that offer government-funded universal healthcare to their citizens. Most are based on either unsubstantiated rumors or outright lies. Yet, only our system creates the abysmal constellation of unfavorable conditions that can lead a Franciscan hospital to turn away a poor woman of the very sort Francis of Assisi devoted his life to caring for, allowing her to die on the cold, concrete floor of a jail cell.
Here’s one pipeline whose value everyone can agree on. It’s the pharmaceutical research pipeline. I saw an article today directing me to an online brochure detailing just how many new medicines are in the pipeline for blood cancers.
