November 16, 2013 - The Best Gift Nobody Wants

There's a great deal of wisdom in this brief (3 minutes) TED Talk from 2010, by cancer survivor Stacey Kramer. It expresses a viewpoint very similar to my own, when it comes to the unexpected gifts cancer can bring. (The last several minutes are a commercial you can skip.)

November 10, 2013 - Ping!

I am in the hospital - Ocean Medical Center - although I'm glad to be able to say it has nothing to do with a recurrence of my lymphoma.

I'd been having problems with shortness of breath of late, and it got so bad that I asked Claire to drive me to the Emergency Room. Various scans revealed a diagnosis of pulmonary emboli, or runaway blood clots - one in each lung - and another one developing in my lower right leg.

I was actually relieved to hear that diagnosis, because when a guy in his late fifties starts gasping for breath, there are other, more ominous possibilities that spring to mind. My heart, they tell me, is fine, and I've got the blood pressure of a young man - so say the hospital techs who wrap the cuff around my arm several times a day - so, this mechanical blockage seemed to be a relatively simple problem to address. A pulmonary embolism can do real damage, even causing sudden death, but generally, once such clots are lodged in the tree-like airways within the lungs, they dissolve on their own. It's a waiting game, augmented by medication (and, in my case, by surgery to install a small "filter" inside my vena cava, to catch any clots that may break off and start sailing the bloodstream).

The up-and-coming clot in my leg is of greater concern, because clots that break off from such a location can end up not only in the lungs, but also in the brain (stroke) or in the heart (heart attack).

The decision was made to treat me with blood-thinners - warfarin (Coumadin) pills as well as something called Lovenex that they taught me to inject myself with, because I'd likely need to keep up with that therapy twice a day at home. "Lovenex for the love handles," is what they say - because that's where the tiny hypodermic syringe's needle gets inserted.

I'd been in the hospital for a week, on oxygen and a heart monitor (just to be safe). I didn't feel especially bad, and the supplementary oxygen really did help. The decision had just been made to send me home, so Claire was in the room helping me pack my things. Sitting in the bedside chair, I began to feel lightheaded and to experience some pain in my abdomen. They laid me back in the bed, and I began to hear two words, over and over: "rapid response." Suddenly, everyone but me had been whisked out of the room, and I was surrounded by hospital staff and little carts with electronic gadgets on them.

The blood-thinners had led to an abdominal bleed. I can recall feeling fortunate that this had happened while I was still in the hospital, and not on the way home. I would later learn that it was likely caused by one of those Lovenex needles that missed the soft roll of the love handles and pierced some muscle instead. But who's to say?

There followed the single most agonizing night of my life. The doctors - a new breed called hospitalists, who monitor patients on behalf of other doctors like our family practitioner David Cheli, who now sees patients only in the office - had prescribed morphine for pain. But it wasn't enough. My nurse was holding rigidly to pharmacy protocols (as well he should, for a narcotic), but I was needing another dose about twice as frequently as he was allowed to give one to me. He stood firm in the face of all my entreaties, and Claire's as well, who had decided to spend the night in the bedside chair.

My begging must have become so piteous - I can recall punctuating my plea with the phrase, "I beg you, man, by everything that's holy" - that he finally did contact one of the hospitalists on call, who sent word to switch me to intravenous Dilaudid. That stronger medicine helped some, but I was still riding the downslope of its effectiveness about an hour before the next dose was permitted.

I don't suppose it was easy for him to see a patient in such agony, pulling myself as high up onto the bed rail as I possibly could (the least painful position) - and he did seem to be a genuinely caring individual - but there we were, both caught up in an inflexible and somewhat arbitrary system.

No minutes ever moved more slowly than the last 15... 10... 5... 1... before the nurse was at last able to inject a new dose of Dilaudid into my IV line. As he would leave the room to do whatever nurses need to do in the middle of the night to access the hard stuff, he didn't always think ahead (or was perhaps distracted by the needs of his other patients), leading to my getting my medicine dose not merely on time, but even a little late. Those extra minutes seemed an especially unfair addition.

Yes, I know narcotic addiction is a very real thing in our society, and there are some who would eagerly raid a hospital dispensary in the middle of the night to feed their habit, but it does seen a shame that such protocols would cause even a minute of delay for a patient who is in severe pain for legitimate reasons.

It's also a shame that a nurse would feel the slightest hesitation about tracking down a doctor on call, to see about switching pain medications, but I could tell he was inclined, at first, to stick close to the hospitalist's original orders. Such is the elaborate pecking-order of the healthcare system. Who knows - maybe he'd been stepped on by a doctor's outsized ego sometime in the past?

What's the point of asking patients about their pain level, on the proverbial scale of 1 to 10, if nobody does anything meaningful with that data?

Anyway, I didn't mean to go off in this direction, talking about pain management, but recalling my story brought that miserable night back home to me.

What I did mean to write about - and still will - is a thought I had while lying in my bed on the Critical Care Unit (which is where my pulmonologist, Dr. Gustavo De La Luz, insisted I be taken the next morning, as soon as he was on the case).

I was wired to all kinds of monitoring devices, and was very aware of the small screen just over my left shoulder that recorded my heart rate, respiration and all the rest. From time to time, that screen would emit a soft "ping," indicating something worthy of note.

I realized, then, how a return visit to Susan Sonntag's "Kingdom of the Sick" is very much an encounter with the radical present. For the past two weeks, everything going on in my life by way of future plans has been rendered irrelevant. The longer-term past has some continuing significance, to be sure, but only with respect to matters such as medical history. People like me wearing hospital gowns have shed any status or position they may otherwise enjoy in society. It doesn't matter how we'd planned to spend our time before experiencing this medical detour, because all such plans have gone out the window. We are cases, now, and the medical institutions that seek to heal us do so through relentless attention to the present. The future belongs to the well. For the sick, it's all about the present.

Lying there in Critical Care, I took note of the electronic sentinels silently watching the most critical of data, issuing that soft tone to call attention back to the inescapable present. Back in history the jagged lines on the screen extend, but only until a new present intrudes. As for the future, that remains offscreen.

Back in a regular hospital room as I now am - missing church on this Sunday morning and awaiting word on options for physical therapy to regain my strength, it looks like I'm going to be living in the present for a while longer.

Ping.

August 11, 2013 — Bye, Bye Scans

So, this past Friday I go to see Dr. Lerner. It’s a routine, 3-month appointment, with port flush. I get the flush, I go for the blood draw (necessary because my port no longer works both ways - just going in, rather than taking out), then it’s out to the waiting room for a while.

Into the examining room, the nurse does the intake interview, and the doctor comes in. Dr. Lerner starts looking at the computer screen, reviewing my records. As he does so, he makes it clear he’s no fan of using the computer for patient records. (Those 3-inch-think files have been a thing of the past, in his office, for the past half-year or so.) He explains the insurance companies have forced it on them. He doesn’t like it much, because he has to spend half the time, during an examination, staring into the screen, rather than looking at the patient.

I have to say, I’ve noticed the same thing. It makes the doctor appear disinterested in the patient as a person, which I know is not the case with Dr. Lerner. It’s all about body language, and he knows it. He’s wishing he could do something to overcome that, but he can’t.

Anyway, here’s the real news. Towards the end of the examination, I ask him if he wants to schedule another scan. It’s been about 6 months, my usual interval these days.

Looking back over my records, there on the screen, Dr. Lerner says no, he doesn’t think so. With my last chemo in the spring of 2006, a recurrence 8 months later, but no change ever since, he thinks we can probably stop doing scans altogether. He still wants me to come in every 3 months for blood work and a physical exam (feeling for swollen lymph nodes in my neck and under the armpits), but he doesn’t think the CT or PET scans are called for any longer. If I experience any of the typical lymphoma symptoms in the meantime, I’m to call him, and he can always order a scan on that basis.

Wow. A milestone. These regular scans have been a part of my life for the past 7 years or so, but now that part of my cancer journey seems to be over. I take it to be a very good sign. The doctors don’t use the word “remission” with an indolent lymphoma like mine, but sometimes they do reach the point when it seems to make sense to just wing it without the scans.

Dr. Lerner also says I can get my chemo port removed, at long last. Those monthly “oil changes” (my port flushes) have likewise been a part of my life for the past 7 years.

It’s up to me, he says. I can call Dr. Gornish, the surgeon who put it in, and ask him to take it out. It’s a simple surgical procedure, done in his office. Local anesthesia: just some lidocaine, a quick cut with the scalpel, and he yanks the thing out.

I do feel some trepidation about that, because I’ve heard tales from other cancer survivors about how getting that port removed with just local anesthesia is sheer agony – brief, to be sure, but agonizing all the same. Mine’s down pretty deep, too. But then I’ve heard others say it’s not so bad.

Guess we’ll see about that. I’m eager to have it out. No more monthly needle sticks.

So, all in all, it’s pretty good news.

I'll take it.

July 6, 2013 - Healing Bubbles

OK, I’ll admit this sounds a little wacky, but evidently it’s the real deal.

Researchers at Oxford are investigating ways of treating cancer with bubbles.

Yes, bubbles.

It’s a new way of delivering chemo drugs: inside tiny bubbles injected into the bloodstream.

Now, before you start quoting your favorite Agatha Christie novel featuring some nefarious murderer whose m.o. is injecting air bubbles into the victim’s blood, let me make clear that these are very tiny bubbles — so small as to cause no difficulty as they pass through blood vessels.

The goal of this novel treatment is to reduce chemo’s side effects. If the toxic chemicals are carried inside bubbles, the researchers at Oxford’s Biomedical Ultrasonics, Biotherapy and Biopharmaceuticals Laboratory (BUBBL) reason, they’re less likely to do harm to healthy tissue.

(Yes, that acronym was “BUBBL.” Nice to see scientists with a sense of humor.)

Once the bubbles reach their target, technicians direct a focused ultrasound beam at the tumor, which evidently makes the bubbles floating by adhere to the surface. Then, they zap the clusters of bubbles with a higher-intensity ultrasound signal, bursting them and spreading the chemo agents all over the tumor.

Quite apart from the chemo-laden bubbles, this same researching team is learning that highly-focused ultrasound beams can cause bubbles to form in living tissue. The article from Oxford Today, the University’s alumni/ae magazine, describes how this works:

“A transducer — the device which creates the sound beam — can send a high frequency sound wave into the body, creating pressures at the focus capable of causing spontaneous formation of bubbles. As the pressure is quickly varied, those bubbles expand and contract rapidly, and their motion creates such large increases in temperature that a section of cancerous tissue about the size of a grain of rice is effectively cooked and killed. By repeating that process it’s possible to destroy entire tumours — without ever cutting a patient open.”

We’ve been hearing for some time about a technology known as Cyber Knife — a highly focused radiation beam that can fry tumors without invasive surgery. Now, it seems, bubbles can do something very similar.

And who thought bubbles were just a kids’ toy?

June 29, 2013 - "Time, Time, Time Is on My Side, Yes It Is"

OK, this is really good news. A study of the survival rate of follicular lymphoma patients is showing a significant and steadily growing improvement since the 1960s.

The study results are published in an article, “Improvements in observed and relative survival in follicular grade 1-2 lymphoma over four decades: The Stanford University experience,” in Blood, June 18, 2013.

I don’t have follicular lymphoma — the small cells in my “B-cell, diffuse mixed large and small cell” grading evidently don’t display the same shape under a microscope as do follicular cells — but both are small-cell indolent lymphomas, treated more-or-less the same way. So, I take this good news to apply to my situation as well.

I’ve known this for years — that survival rates are getting better and better, as new treatments are steadily being rolled out — but it’s good to see some actual numbers, as part of a long-term historical study.

The study conducted at Stanford University identifies four historical eras:

Era 1, pre-anthracycline (1960-1975)
Era 2, anthracycline (1976-1986)
Era 3, aggressive chemotherapy/purine analogs (1987-1996)
Era 4, rituximab (1997-2003)

I’m off the chart in this study — a member of Era 5 — because I received my R-CHOP chemo (three chemo agents including anthracycline, plus the steroid prednisone, plus rituximab) in early 2006. So, my odds ought to be as good as, and probably better than, the era-4 patients.

Median overall survival rate steadily improved from approximately 11 years in eras 1 and 2 to 18.4 years in era 3. It’s not yet been reached for era 4 — because too many people in that cohort are still alive for researchers to have established their median age at death.

OK, so pre-rituximab follicular lymphoma patients are surviving for an average of 18.4 years after treatment. Rituximab-era patients up through 2003 are presumably doing much better than that (although the researchers can’t say, yet, by how much, because the numbers still aren’t in). I’m in the 15-year cohort beyond even that, that still hasn’t closed.

Even if the Era 4 numbers were to surprise everyone and reflect only a very modest gain (say, a 20-year average overall survival rate), that would peg the typical life expectancy of people who were treated at age 49, as I was, at age 69. Yet, because of the revolutionary impact of rituximab, the Era 4 group’s survival rate will likely prove to be much higher than that.

The news gets better. I’m not in Era 4. I’m in the yet-to-be-studied Era 5. Projecting the Stanford researchers’ steady increase into the future, that would push the average overall survival rate for patients from my era higher still.

I’m aware that I’m basing this speculation on the abstract, rather than the full article (which requires a subscription to the journal, Blood, to read online). I’m also aware that, once we get out of Era 3 (the latest one for which an actual median overall survival rate can be measured), we’re dealing in some very soft — and in the case of my Era 5 — even non-existent numbers. But, the trends look good.

“So teach us to count our days that we may gain a wise heart” (Psalm 90:12). I’m pretty sure the psalmist is talking about remaining aware of just how soon one’s own death may be coming. Does numbering our days in the opposite direction make us less wise?

I don’t know, and I don't much care. I’ll take the good news, all the same.

June 14, 2013 - Another Testimony for Radioimmunotherapy

A recent news article reports on another research study singing the praises of radioimmunotherapy (RIT), as an alternative to a stem-cell transplant. In RIT, radioactive isotopes are bonded to particles of rituximab (Rituxan), which just so happens to be the drug I received in conjunction with my R-CHOP chemotherapy in 2006. The radiation, which is delivered directly to the cancer cells by the rituximab, makes RIT a one-two punch that is proving to be very effective in enhancing long-term survival.

The two leading RIT drugs are Bexxar and Zevalin.

It does require doctors to think outside the therapeutic box, because practitioners must have one foot in each of two different treatment areas - oncology and radiology - that are usually the province of different medical specialists. While RIT treatments are very expensive, typically patients need to receive just one (as compared to multiple rounds of chemotherapy or traditional targeted-beam radiation, or the vastly more expensive - and more risky - stem-cell transplantation option).

VANCOUVER, British Columbia — In patients with refractory or relapsed aggressive lymphoma, immunoradiation combined with high-dose chemotherapy is associated with better progression-free and overall survival than chemotherapy alone when used in advance of autologous stem cell transplantation.

The BEAM chemotherapy consists of BCNU, etoposide, cytarabine, and melphalan.

"We started adding immunoradiation to BEAM about 9 years ago," said Tzila Zwas, MD, professor of nuclear medicine at Tel-Aviv University in Israel. "It was the hematologists' idea, because BEAM alone extended patients' lives by a few months only. The prognosis was very grave."

When Y-90 ibritumomab tiuxetan (Zevalin) was added to high-dose chemotherapy, "it was so successful — extending lives by over 2 years — we decided to conduct a multicenter trial," she explained....

The Z-BEAM approach improved overall and progression-free survival, "which is critical in hematology," said Dr. Zwas. The researchers also found positive effects in elderly patients. "This is very good news because we are dealing mostly with elderly patients. Refractory or relapsed aggressive lymphoma is not as common in the young age group. If elderly patients can achieve quality of life with low toxicity, it's unbelievably beneficial to them," she added....

Dr. [Norman] LaFrance said he hopes to see radioimmunotherapy combined with chemotherapy in earlier stages of disease and in other indications. "It's an evolution that hasn't occurred quickly enough, but I think it will," he explained. Medical oncologists are not trained to deal with radiation therapy, and there could be issues of reimbursement. "It's complicated, it's multifactorial, but I think it's turning the corner that people think combining radioimmunotherapy with chemotherapy is the right thing to do."

- Excerpted from "Radioimmunotherapy Improves Lymphoma Survival," by Jim Kling, Medscape Medical News, Jun 14, 2013.

April 27, 2013 — A Pretty Good Pipeline

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.

April 12, 2013 — In the Gray Area

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).

The program was sponsored by CancerCare.org.

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!

April 6, 2013 — Newly Diagnosed? Tips from the Lymphoma Club

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.

April 2, 2013 – By Name

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.)

March 29, 2013 – For Hmmm... the Bell Tolls

We’ve changed our Good Friday practice at the church, in the last year or so.  Faced with dwindling attendance at the noon-to-three service we used to offer in conjunction with several other churches in the community, we finally gave up on that service and decided to hold one at seven p.m. in the evening, instead. Tonight we’re offering what we expect will be a simple but moving Taizé service, backed by the Chancel Choir, who are in the process of learning what contemplative chants are all about. We’ll see if perhaps we can start a new local tradition.

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?

February 21, 2013 – In Training

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.

Who would’ve thought it?