Monday, November 17, 2014

November 17, 2014 — Bye, Bye Bexxar

There are many ways our market-driven healthcare-funding system in the United States is just plain crazy, but one of the most damaging is the way it tends to suppress certain vital and effective medications. This has evidently just happened to Bexxar, which is no longer available. Along with its competitor Zevalin, Bexxar is a radioimmunotherapy agent.

Radioimmunotherapy is an ingenious bonding of a monoclonal antibody drug — Rituxan (rituximab) — with tiny radioactive particles. It delivers a one-two punch: the Rituxan chemically seeks out the cancer cells and the radioactive particle destroys them.

Radioimmunotherapy has proven to be very effective, and has the added advantage of doing its job in just one dose, with minimal side effects.

What’s not to like?

The people who really don’t like it are oncologists. And why? Because not many of them have the proper qualifications to administer it. As a hybrid of nuclear medicine and oncology, radioimmunotherapy requires doctors either to be dual-certified in both disciplines or to be part of a large clinic or group where both specialties are represented (a rare thing, in this case).

Many oncologists profit on two levels: both their professional fees and the fees they charge for running a chemotherapy suite. If their chemo suite doesn’t offer nuclear medicine as well, they lose a big chunk of change by referring a patient out.

An oncologist who refers a patient for radioimmunotherapy loses tens of thousands of dollars in billable fees. That’s a powerful financial incentive to stick with traditional chemo — even though that treatment takes longer (many months of infusions as compared to a single injection) and often has arduous side-effects.

This is not a problem for a large, multi-specialty clinic, but the typical oncology practice — which includes a group of oncologists only — can’t handle it. As Dr. Bruce Cheson of Georgetown University puts it, “patients had to be referred from one doctor to somebody somewhere else, which meant not only losing control of the patient, but also losing income from the patient.”

In many cases, radioimmunotherapy agents cost less — not as a single dose, but when averaged out over the total time required for treatment.

“There is actually no other drug out there with a track record like this,” writes Dr. Mark Kaminski of the University of Michigan, who helped devlop Bexxar. “Approximately 30% of patients can achieve long-term remission with Bexxar lasting over a decade. That's the biggest disappointment with this drug, now that it's gone, for patients with this disease — it was an easy treatment, it took only one week to finish, and if there were any side effects, they were all reversible. I've been giving Zevalin lately because I don't have Bexxar to work with, but I don't have as much confidence that it will be a solution for patients as much as Bexxar would have been.”

If we had a single-payer healthcare system (like Medicare), and if doctors practiced in multi-specialty clinics like the Mayo Clinic or the Cleveland Clinic — where they receive a salary rather than billing patients by the hour — then doctors wouldn’t stand to lose by recommending radioimmunotherapy. More patients would benefit.

Why do we expect physicians to be both medical practitioners and entrepreneurs? Sometimes those two functions are in conflict with one another, and this is a prime example.

Too often in our healthcare system, profits come first and patients second.

Monday, November 10, 2014

November 10, 2014 — The Downside of Early Diagnosis

I read in the New York Times the other day about an “epidemic” of thyroid cancer in South Korea: a fifteen-fold increase in what had been, until recently, a relatively rare cancer. Thyroid cancer is now the leading cancer in that country.  (H. Gilbert Welch, "An Epidemic of Thyroid Cancer?" New York Times, November 5, 2014.)

How to account for the increase? A team of researchers set out to discover the reason.

After gathering their data and running the numbers they came up with the culprit: increased diagnosis.

Yes, diagnosis. Beginning in 1999, the government health program started paying for cancer screenings. Many doctor’s offices are equipped with relatively inexpensive ultrasound machines, so they naturally ordered up the test. Drastically increase the number of screenings and you’ve got — you guessed it — a greater number of diagnoses.

It’s not that there was an increase in thyroid cancer. There was an increase in the ability to diagnose the cancers that were already there.

That may seem like a good thing, but it’s actually a bit more complicated than that. As the article goes on to explain:

“Where did all those new thyroid cancers come from? They were always there. As early as 1947 pathologists recognized that, although it was a very rare cause of death, thyroid cancer was a frequent finding during autopsies. Studies have since shown that over a third of adults have thyroid cancer. Virtually all of these cancers are small ‘papillary thyroid cancers,’ many of which will never become evident during a person’s life.

Unless that person receives a screening ultrasound. In fact, virtually all the newly identified thyroid cancers in Korea are papillary thyroid cancers. How do we know this is not a real epidemic of disease? Because the number of Koreans dying from thyroid cancer has not changed. If the screening were saving lives, the death rate would decline, or increase more slowly as the epidemic spread — but not stay perfectly flat.”


I was diagnosed with papillary thyroid cancer a few years ago and had my thyroid gland removed. I had no physical complaint at the time. I wouldn’t have known I had it, were it not for the regular CT scans I was having at the time (monitoring me for a recurrence of lymphoma).

I take a thyroid-hormone replacement pill (Synthroid) every day, and calcium supplements (Extra-Strength Tums) twice a day, because my blood tests following the surgery indicated calcium deficiency (a common side effect of thyroid surgery, due to damage to the nearby parathyroid glands). That’s no great inconvenience, but if I went a couple of weeks without my Synthroid, I’d be pushing up the daisies.

Was my surgery necessary? Would watch-and-wait have been more appropriate? There’s no way to tell for sure. Complicating the decision, of course, was the fact that I was already a cancer survivor at the time the thyroid tumors were found.

Still, I wonder...

Tuesday, October 14, 2014

October 14, 2014 — Hospice and the Elephant in the Living Room

OK, this is something of a grim subject. But it need not be.

The subject is conversations about dying and end-of-life care. I’m writing, now, more as a pastor than as a cancer survivor reflecting on my own situation. (Thankfully, my health has been good, and there’s been no sign of recurring lymphoma.) My wife, Claire, is a minister who’s worked for more than 15 years in hospice ministry, so this is a subject that does come up at the dinner table from time to time.

I’ve seen a number of moving news articles on this subject recently.

Atul Gawande has written in the New York Times, summarizing the goal of palliative care in hospice programs as providing patients with “the best possible day.” Hospice has got that wonderful here-and-now focus. Not tomorrow. Not next week. But today. Carpe diem.

Nina Bernstein has written in that same newspaper about a situation in which offering a patient the best possible day seemed to be the last thing on medical caregivers’ minds. She tells the story of Maureen Stefanides, who worked without letup to find a way to get her dying father, Joseph Andrey, out of a nursing home and back to her home so he could die with dignity. Tragically, a web of competing health and financial regulations — coupled with a shortage of home-care nurses and aides (a singularly low-salary occupation) in high-rolling New York City — made that impossible. As it was, the poor man was simply falling apart with multiple age-related issues, and no one seemed willing to stop the aggressive-treatment train. Stopping it in his case was all the more difficult because the nursing home stood to lose profits if they discharged him to home hospice care. (“The nursing home collect[ed] $682.48 a day from Medicare, about five times the cost of a day of home care.”) There’s really got to be a better way to run a healthcare system.

In Ms. Bernstein’s case, talking about hospice care was not the issue, but for many families it’s the proverbial elephant in the living room. Family members tiptoe around the subject, thinking it’s important to keep a relentlessly positive attitude, fearing that if their loved one knew he or she were “terminal,” the terminus would arrive all the sooner. In reality, the sick person is likely very aware of the imminent end, and may have strong feelings about what sort of end-of-life care is the best. Yet, on their side, seriously-ill patients sometimes hesitate to raise the subject with their families, out of deference to their feelings. Such “after you, Alphonse” hesitation often leads to an unwanted final few days in a medically-invasive intensive-care unit.

An article about President Obama’s recent signing of the Impact Act, which will lead to greater Federal scrutiny of hospice programs, observes that “The median length of stay for hospice patients in recent years has been fewer than 20 days — probably much too short, in many cases — so a hospice that provides six months’ care for half its patients is a true outlier.” Claire has shared, from her experience in hospice chaplaincy and bereavement support, that a shockingly large number of patients in her program live less than 48 hours after their admission to the program. This has nothing to do with the quality of care; it's just that so many patients aren't even recommended for hospice until they're just days (sometimes hours) from the end. I’m told hospice team members have a name for that sort of patient: “on and gones” - as in "on the program and gone." In some cases, the program barely has an opportunity to provide any of their excellent services, because the patient doesn’t live long enough to receive them.

The heightened Federal regulation is important, because there’s been a proliferation of for-profit hospice programs, taking advantage of Medicare payment policies that can make palliative care financially lucrative for the providers, especially if they can pick and choose which cases they accept. Some of these for-profit programs are heavy on the marketing and light on the services provided. Claire works for a non-profit program associated with our local hospital system. They have a lower profile but provide better, more comprehensive services than some of the for-profits.

A few years ago, Sarah Palin got the whole nation into a fit of agita over her made-up “death panels” campaign issue. I think this is one of the most reprehensible things any politician has ever done, because the government’s failure to work the end-of-life conversation into Medicare payment regulations has led to a great many patients missing out on hospice care they would have very much wanted. Political opportunism at its worst.  For shame.

Too many patients today are paying a heavy cost for her death-panels diversion.

We’ve simply got to find a better way, as a society, to talk about this particular elephant in the living room.

Wednesday, September 03, 2014

September 3, 2014 — Go On In, You’re Surrounded

I ran across an article today that made me think. Here’s Mike Di Ionno, a columnist for the Newark Star-Ledger, reflecting on the experience of his brother, Paul, who died of a rare cancer:

“I don’t know what’s worse, the cancer or the loneliness,” he said. “Because at night, when Lolly (his wife) kisses me on the forehead and puts me to bed and turns out the light, it’s just me and this disease. When I leave the doctor’s office, it’s just me and the cancer. When people visit, they leave and then it’s just me and the disease.”

There is something isolating about the experience of cancer — or, I suppose, any serious illness. If you catch a cold, there are plenty of people who can commiserate with you about the runny nose, the sore throat and all the familiar symptoms. Everyone knows what it’s like to have a cold. Talking about those symptoms with someone else is an exercise in community.

Not so with cancer. The majority of the people you meet have never had it — or, if they’ve had some other form of cancer, their symptoms can easily be very different from your own. Sitting in the chemo chair, you look around and realize that only the people reclining in the other chairs have the slightest idea of how it feels. Not even the nurses, who pump that goop into people’s veins every day, know how it feels.

But there’s some consolation, as Mike Di Ionno points out. There are people — a very small number of people — who hang in there with you. They can’t sympathize, because they haven’t been through it. But they do their best to empathize:

“I have learned that the obituary words ‘surrounded by family’ are the most beautiful phrase in this newspaper. It is the only thing that eases the loneliness of the disease. It comforts, when medicine fails.”

Some good advice for all of us, when a friend or family member has cancer:

“When someone is in the final stages, we all feel helpless and uncomfortable, and worry about being intrusive on private pain and grief.

We ask, ‘What can we do?’

My answer today is, ‘Show up.’

Show up and hold their hand. Show up and say the things you’ll regret not saying, even if they are whispered in the ear of a comatose person. Leave nothing unsaid. Leave nothing unsaid.

Show up in person, call on the phone. Prove to them they were loved and that they mattered.”

Here endeth the lesson. Amen.

Saturday, August 09, 2014

August 9, 2014 - A Promising Discovery

"I have seen the future of cancer treatment, and its name is... Silvestrol?”

I’m not qualified to make such a claim, of course, but maybe some knowledgeable researchers who are would go so far as to say such a thing. There’s a bit of hyperbole in that statement, but it’s an eye-catching way to point out a new discovery that could be a really significant development in the long term, for blood-cancer patients.

According to an article the Leukemia and Lymphoma Society has been sending around, Silvestrol is a compound derived from “a plant called Aglaia foveolata, which is native to Indonesia, Brunei, and Malaysia.”

Rather than attacking a certain well-known cancer-causing gene, this stuff prevents it from being produced at all.

The tree is an endangered species, whose habitat is threatened by development.

An older article, chronicling the substance’s discovery, is here.

This reminds me of a movie that came out a while back, Medicine Man (1992), starring Sean Connery and Lorraine Bracco. Two courageous botanists fight off developers, whose bulldozers are about to ravage a section of Amazonian rain forest where a promising cancer drug has just been discovered. They bicker then fall in love, of course. (Hey, it's Hollywood, what do you expect?)

There’s more on the website of Memorial Sloan-Kettering (which is where Silvestrol’s treatment potential is being investigated)). “Blocking the production of key cancer genes is a completely new way of treating cancer,” says Dr. Hans-Guido Wendel, a Memorial Sloan-Kettering cancer biologist. “That is exciting, and it also means we have a lot to learn about it.”

I will likely be years before any patients can be treated with this new drug, but its discovery is certainly something to celebrate.

Thursday, August 07, 2014

August 7, 2014 — Lessons from Valerie

Valerie Harper was a fixture on TV sitcoms when I was growing up. From her role as Mary Richards' BFF on The Mary Tyler Moore Show, to her own spinoff, Rhoda, to a host of other TV and stage roles, her brand of wacky, self-deprecating humor has had a long run.

Now, her days are filled with thoughts of something decidedly not funny: lung cancer, metastasized to the meninges, the membrane surrounding the brain. She’s receiving experimental treatments, hoping for the best and trying to get the most out of every day.

She never smoked. Although many people hear the words “lung cancer” and say to themselves, “Oh, another smoker,” that’s certainly not true of every lung-cancer patient. In Valerie’s case, it’s probably in her genes. Her mother, also a non-smoker, succumbed to the same disease.

A recent article in the AARP Magazine describes Valerie’s active way of engaging the disease. Here are a few things that have worked for her:

1) Visualization: “She has also been practicing imagery, envisioning a tiny Tinker Bell-like version of herself moving through her meninges, tapping her cancer cells with a magical finger. ‘They then become glowing little good cells,’ she explains with a giggle, ‘or, if they’re not willing to give up their cancer-ness, they just turn into white lights. I talk to them, saying, “Listen, you guys, this is dumb. We could live together. But you can’t keep growing and crowding out the other cells. You’re killing the host!”’”

Visualization didn’t do much for me when I was receiving cancer treatment, but I know it’s a technique many survivors swear by. What I find especially healthy about Valerie’s approach is that she doesn’t treat the cancer cells like invaders, like some bacteria. She’s fully aware that her cancer cells are part of her own body. They’ve just gone rogue. If she’s able, by focused thinking, to influence the behavior of those cells, so much the better.

Note that she doesn’t employ the familiar military metaphor here. She’s not “battling” cancer. She’s accepting it as part of her own body, a malfunction in her genes. She’s trying to reason with it. Whether or not her visualization exercises are having any real effect, who’s to say? We do know the mind-body barrier is somewhat porous, though — so, why not?

2) Humor: As one might expect of a comedian, Valerie lightens the situation with humor: “‘I’m past my expiration date,’ Harper jokes as she addresses a small crowd.... “But really, I am holding my own, as you can see. My motormouth has not stopped! Seriously,’ she continues, ‘what I have is not curable. That’s not the way with this disease, apparently. But who knows? This diagnosis makes you live one day at a time, and that’s what everyone should do: Live moment to moment to moment.’”

Note the realism in Valerie’s remarks. I’m sure she hasn’t stopped hoping for a miracle, but she’s not planning on one. There a real centeredness about that approach: living, as fully and intentionally as possible, in the now. Humor helps ground us, moving our thoughts away from future dread and back into the present.

As Valerie’s former Mary Tyler Moore Show co-star, Betty White, says of her: “She’s kept her sense of humor and balance. My beloved husband Allen Ludden [who died from stomach cancer in 1981] had that same attitude, and I swear it added a year we wouldn’t have had.”

3) Gratitude: “‘Look, I was 73 when I got this news,’ says Harper. ‘Not 43. Not 28 with little children. I don’t want to leave my daughter or this doll of a husband. But I have to be realistic. I’ve had a lot of great stuff — spectacular stuff — happen to me. I’ve got to not be a pig about life.’ She tosses her head back and laughs.”

That calls to mind the line from Proverbs 31:25, the description of the “capable wife,” who’s so much more than merely an appendage to her husband, a wise and strong woman:
“Strength and dignity are her clothing,
and she laughs at the time to come.”

Some people, dealing with a discouraging cancer prognosis, would focus only on that, but Valerie explains how she’s focusing on the goodness she’s enjoyed. She’s determined “not to be a pig about life.”

According to the article, Valerie has accomplished all this without relying on resources of faith (at least, not faith in the conventional sense). She’s not a religious believer, but has pursued self-help programs from the human-potential movement.

Visualization, humor, gratitude: these are resources anyone can tap into. Of course, from my perspective, I’d say faith takes us far beyond any strength we can summon up from within ourselves, or by relying on loved ones. There’s no reason, though, to belittle resources such as these, which are formidable.

We can be grateful to Valerie for being such a good teacher, and sharing her inner life so freely.

Wednesday, June 25, 2014

June 25, 2014 — Comfort In, Kvetch Out

A friend shared an article with me the other day that contains a piece of advice that’s so practical - so downright sensible - it seems incredible no one has thought it up sooner.

It comes from a newspaper article that’s about a year old. In a Los Angeles Times article, "How not to say the wrong thing," April 7, 2013, co-authors Susan Silk and Barry Goldman address the age-old question, “What do you say to somebody who’s sick?

To understand the advice, you have to conjure up a simple diagram composed of concentric circles with a dot in the middle. The dot is the sick person. The first circle around the sick person is the sick person’s closest relative — a spouse, a parent, a child. The next is other immediate family. Then comes extended family. After that, friends. Then, close co-workers. Then, people in the next office who nod hello to them at the water cooler. Keep drawing circles until you work down to the level of casual acquaintances.

The categories associated with one person may be a bit different than for another. Some people are closer to their best friends than to their family. It’s not so much the labels on the circles that are so brilliant, as what you do with them.

After you’ve plotted your own location on one of the circles, take a look at those who are closer to the patient than you. Then, turn around and observe those who are not so closely connected as you are.

The Comfort In, Kvetch Out rule is this: When you turn towards those who are closer to the patient than you, what you say should be words of comfort. When you turn towards those who are in a less intimate relationship than you, then you can feel free to kvetch — to complain about how bad your friend’s or relative’s illness makes you feel, or how it inconveniences you.

We all need to kvetch from time to time. The art is in deciding who we kvetch to. If our kvetching is directed outwards, that’s fine. If it’s inwards, it can be a burden to those who are already carrying more burdens than we are.

The most important person in the system — the patient — is allowed to kvetch 100% of the time,  no questions asked. As for the communications they receive from others, the goal is 100% comfort.

From the article:

“When you are talking to a person in a ring smaller than yours, someone closer to the center of the crisis, the goal is to help. Listening is often more helpful than talking. But if you're going to open your mouth, ask yourself if what you are about to say is likely to provide comfort and support. If it isn’t, don’t say it. Don’t, for example, give advice. People who are suffering from trauma don’t need advice. They need comfort and support. So say, ‘I’m sorry’ or ‘This must really be hard for you’ or ‘Can I bring you a pot roast?’ Don't say, ‘You should hear what happened to me’ or ‘Here’s what I would do if I were you.’ And don’t say, ‘This is really bringing me down.’

If you want to scream or cry or complain, if you want to tell someone how shocked you are or how icky you feel, or whine about how it reminds you of all the terrible things that have happened to you lately, that’s fine. It's a perfectly normal response. Just do it to someone in a bigger ring. You comfort people in the smaller rings. You kvetch to people in the larger rings.”


One important take-away from the article is that advice-giving is a variety of kvetching. You may think you’re helping the person in the smaller ring, but you’re not. Most of the time, advice-giving is more about meeting the needs of the advice-giver than it is about genuinely helping the advice-receiver.

Very likely, what the person in the smaller ring yearns to receive from you, far more than advice, is listening. Listening is one of the most important forms of comfort.

Comfort in. Kvetch out. Not a bad little rule, don’t you think?

Tuesday, June 03, 2014

June 3, 2014: Seasons of Survivorship

I feel like my life as a long-term lymphoma survivor is like those series of photos you sometimes see, depicting a changing landscape through many seasons.

The concerns of a survivor immediately after diagnosis are quite different from those of a person who’s been through various treatments — be they “watchful waiting” or something more aggressive — and years of wondering when, or if, treatment will ever be required again.

A recent online interview with an experienced cancer nurse — Richard Boyajian, RN, NP, Clinical Director from the Dana-Farber Brigham Cancer Center — describes this changing landscape.

Although many people tend to lump all experiences together under the label, “cancer,” indolent lymphomas are a very different animal. Everyone wants a treatment plan. Nobody wants a “waiting plan”:

“One of the most difficult things about follicular lymphoma is that it is often more of a chronic disease. You have to treat it like a different animal. If it's not aggressive we tell patients, ‘We'll follow you until it gets bad enough that we want to treat it.’ This approach is often called 'watch and wait,' which can be very emotionally and psychologically difficult for patients to understand and deal with because they don't have an action plan they have a waiting plan. One of the most important parts of survivorship for follicular lymphoma is making sure patients are able to cope with that type of an approach.”

A certain psychological strength is needed. A few of us, I suppose, demonstrate such strength from the beginning. A great many more of us gain it along the way, like a gym patron going through repeated rounds of exercise.

What it’s all about is learning how to live with the unknown:

“For me, one of the most important parts of follicular lymphoma survivorship is acknowledging that it can be very stressful psychologically upfront so the patient knows what to expect and knows that their feeling are normal.

Frequently, after their treatment, patients want to know, ‘When is it going to come back? Is it going to come back?’ Those are really difficult questions to answer because everyone is so individual. Trying to get people comfortable with the unknown is one of the challenges we face as health care professionals.”


Boyajian encourages us to look on indolent-lymphoma treatment not so much as striking a single, decisive blow as resetting a clock. Treatment typically doesn’t wipe it out, but merely pushes it back, after which it can be expected to return eventually:

“Patients should understand that there is a natural timeline for follicular lymphoma; but our goal is to reset the clock. If a patient has a poor timeline because they have an aggressive disease, that's an indication that more aggressive treatment is needed and will change the natural history of that timeline. Someone with an indolent disease and a longer timeline might have a watch-and-wait approach where we make sure the disease doesn't change and become more aggressive.

That's why it is important to discuss the emotional impact of 'watch and wait.' Someone that doesn't need treatment may have a poorer quality of life because they are constantly thinking about their disease and cannot really go on because they're so overwhelmed with it. We want patients to live a long time, but they also need to make sure their quality of life is good. These two things go hand in hand. If people aren't enjoying the life they have, whether it's long or short, that's very upsetting for me.”

Depression is a normal feature of the disease. For me, personally, this has been one of the most difficult learnings. To most people, depression seems an aberration, a disease in its own right that ought to be curable. Often it takes the form of a self-destructive feedback loop: you realize you’re feeling depressed, which makes you feel even more depressed.

Yet, we can also see depression as an indolent disease in and of itself. Or, maybe it’s simply the cancer viewed from another perspective — the mental manifestation of the disease.

Boyajian is realistic about this:

“It is normal to feel anxiety and depression after getting a follicular lymphoma diagnosis but anxiety and depression can cause people to make decisions that may not be in their best interest. We need to ensure that every patient diagnosed with any type of cancer knows it is okay to talk about their concerns and fears. Getting the right treatment for anxiety or depression should be considered a priority.”

There can be a tendency, after treatment begins, to put off other tests and treatments, as cancer becomes the all-consuming priority. I can recall, for example, wondering whether I should postpone going to the dentist, because if I were going to die anyway, what did it matter if I never got that cavity filled?

That’s a mistake, as Boyajian points out:

“Besides following blood counts and the size of your lymph nodes for infection, it is important to remain connected with your primary care doctor and get all of the necessary screenings. Patients should get the normal health screenings as part of the standard medical survivorship follow-up. If a patient has diabetes, heart disease or high blood pressure it is just as important to manage that as well as their cancer. Poorly controlled diabetes will cause more problems than slow growing follicular lymphoma and may also affect future treatment options. The healthier you are, the more options you have so a healthy diet, exercise and maintaining a good weight are very important.”

We survivors learn to take care of ourselves, through every season.

Monday, June 02, 2014

June 2, 2014 — Long-Term Survivorship

This excerpt from the online memoir of a follicular lymphoma survivor, Evelyn Lipori, mirrors my survivorship experience — of the journey from panic and fear to a deep assurance of hope. Evelyn is Director of Individual Giving for the Lymphoma Research Foundation.

There’s quite a difference, as Evelyn points out, between the days right after diagnosis...

“I was only 37 years old and the reality of a cancer diagnosis quickly set in. I became consumed with thoughts of dying, of leaving my husband with our two young children, of not being here for graduations and weddings. I was worried I would never see grandchildren.”

...and the relaxed and assured viewpoint of a veteran...

“Over the years, my perception of survivorship has undoubtedly evolved. In the early days, I was simply grateful to have ‘survived’ my diagnosis and subsequent treatments and still be alive. But today it means many things I never quite imagined.

For me survivorship means hope - finding hope through education and knowledge about my disease and giving hope to others by sharing my experience with newly diagnosed patients.

Survivorship means giving back. I've been involved with LRF in various capacities ever since my diagnosis - as an advocate, a volunteer, a board member, a donor, chapter president and most recently in my current role on the LRF staff as Director of Individual Giving.

Most importantly, survivorship means living life to the fullest despite the 'dark cloud' of a lymphoma diagnosis that can seem to follow you wherever you go. So much progress has been made and continues to be made in lymphoma research that there are now treatments becoming available that were barely an idea in someone's laboratory back in 1997. I live each day with the comfort of knowing there are many alternatives should I ever need treatment again.

In the meantime, I've seen my kids grow up, graduate from high school, college and graduate school. John and I just celebrated our 32nd wedding anniversary and each passing year brings me closer to seeing my children's weddings and the grandchildren I never dreamed I would be here to see.

Cancer survivor? You bet I am!"

Wednesday, April 30, 2014

April 30, 2014 — Bye, Bye Port

Personal lymphoma stories I can tell on this blog have been few and far between lately — which is a good thing — but today I passed a milestone of sorts: I had minor surgery to have my chemo port removed.

This was supposed to happen at the end of last summer, but I’d put it off for various reasons. Then, when I landed in the hospital last October with my pulmonary embolisms (and subsequent internal bleeding and kidney failure), there was no question of doing it then. Now that I’ve put that mess behind me and am off disability and back at work, it seemed the right time to do this.

The surgeon was Dr. Aron Gornish, the same doctor who’d put the port in seven years ago. He’d expressed some concern that the port had shifted recently and was in the wrong position (which, he thinks, probably happened when I was getting the temporary dialysis port put in). Fears of a complicated port-removal fortunately proved to be unfounded.  The port came out easily.

I'd been feeling a great deal of anxiety ahead of this procedure, and I’m not sure why. My worries focused around pain. I’m a veteran of four local-anesthetic surgical procedures — two bone-marrow biopsies and the installation and removal of the dialysis port — and felt pain with none of them. So, you’d think I would be cool, calm and collected about this one.

Not so. If anything, I was more nervous about this surgery, not less. I spoke to Claire about it this morning, through my bleary-eyed, insomniac haze. She thinks it’s because I know more (rather than less) now about what those procedures are like — how, when you’re conscious on the operating table, you just lie there, feeling like you’re right on the cusp of feeling or not feeling pain. You realize how close you are to a perfectly horrendous experience, and how it’s all in the surgeon’s hands whether or not you’ll soon be moaning and clenching your teeth.

Is knowledge truly power? Not in this instance, it seems.

I’d asked Dr. Gornish, several weeks ago, about whether I could expect to feel any pain. “That would depend on your pain threshold,” was his only reply. (Note to surgeons everywhere: this is not a wise thing to say to a patient asking that question, even though it may technically be true. You should talk instead about all the steps you methodically take, in the operating room, to avoid causing pain.)

I didn’t get much sleep last night, because I kept recalling the experience of the dialysis port insertion back when I was in the CCU, and how weird it felt to be lying there with a surgical drape over my face, feeling the tugging and pulling of the surgeon as he completed his mission. I couldn’t help thinking of what it would be like this time if I could feel the cut of the scalpel after all, and if I would jump when the hard little port with its tail of flexible tubing was pulled out through the incision. I imagined how helpless I would feel in that situation, but how the surgeon would have no choice but to forge on, since the procedure couldn’t be halted midstream.

Those fears were groundless. Except for the pinch of the first Lidocaine injections, I felt no pain. I could feel plenty of pressure, along with the predicable tugging and pulling. A number of times I could hear the hiss of the aerosol can of topically-applied Lidocaine, which Dr. Gornish picked up and used frequently. The operating-room nurse couldn’t be more solicitous, engaging me in small talk about our kids and my job, at what I assume were the most critical moments.

I was wearing a blood-pressure cuff and pulse oximeter throughout the procedure. The nurse remarked how, as soon as I’d heard Dr. Gornish say the port was out, my pulse and blood pressure dropped to a normal level. For sure, the body doesn't lie.

I’m home now, with a waterproof bandage covering the incision, under which (they tell me) are steri-strips and dissolving stitches. I’m supposed to keep icing it today, to avoid additional bleeding. I’m also told I have to be careful, when showering, not to get too much water on it, and am not supposed to do any upper-body exercising. Apart from those things, though, there are no special precautions.

I’ve been dreading the port-removal experience for the past six years or so, ever since I heard a fellow cancer support-group member tell of the agony she felt when her doctor just “yanked it out.” Was that a bit of hyperbole on her part, or was her surgeon not so thoughtful about the anesthetic? It doesn’t really matter. I’m just glad to have this experience behind me.

Sunday, March 16, 2014

March 16, 2014 — As Others See Us

“O wad some Power the giftie gie us 
To see oursels as ithers see us!”

Robbie Burns was right. We can indeed learn a lot by considering what others see as they look at us.

Case in point: this column from the German magazine Der Spiegel. The author makes several points, from a European perspective, about the stubborn resistance in these United States to taxpayer-funded, single-payer healthcare.

This viewpoint is noteworthy because the leading European countries have long had such a healthcare-funding system. As have the Japanese. And the Canadians.

Sure, there are murmurings and complaints among citizens of those countries — as is true of any large governmental program. But nobody’s suggesting their nations turn the clock back, get out of the healthcare business and start allowing privateers to provide healthcare according to a for-profit business model, as we do in this country. I also know — from talking to my brother who lives in Canada and to friends who live in Britain, not to mention my own experience of two years living under the British National Health system — that the people of those nations do not, by and large, consider their government-provided healthcare to be a disaster. They may complain about some aspects of it, just as everyone complains about hospital food, but that doesn’t mean they wish someone would come in and whisk it away.

The other fact that’s seldom mentioned in our acrimonious healthcare debate is that, in most of these countries, there are still private, for-profit healthcare providers who cheerfully treat people who possess sufficient funds. Anyone who concludes the government health system isn’t doing right by them, or who desires to bypass a waiting list for a particular procedure, has that option.

I know that, at least in Britain, the cost of these for-profit services is a fraction of the sticker price of comparable medical procedures here in the States — which really isn’t saying much, because American healthcare providers’ sticker prices are artificial creations of their accountants’ fertile imaginations, crafted so as to inflate the amount they can ask insurance companies to pay. It’s like a middle-eastern rug merchant’s first asking-price, down at the bazaar. The truth is, we know very little about the actual cost of healthcare in the United States, because all the players are engaged in this sort of haggling, so the sticker prices have little relation to reality. There are also so many middle-people involved in the transaction — accountants, attorneys, data-entry people, negotiators, various middle-managers — standing there with their hands out, it’s getting increasingly hard to make the argument that government couldn’t do that aspect of the job more economically (as, in fact, it already does, with Medicare).

So, what does this German observer have to say, as she looks on the Obamacare scrum from afar?

1. The ever-practical Germans are baffled that American business is resisting a government program that would give them a competitive advantage. Part of the reason why some of Detroit’s blighted neighborhoods look like a war zone is that so many segments of our once-mighty automobile industry have been transplanted to other countries (in Detroit’s case, just across the river to Canada). Few people seem to realize that a major reason for the economic hemorrhage of outsourcing is that artificially-inflated American health-insurance costs have become such a drag on corporate budgets. Astute corporate executives long ago concluded that moving their operations to another country, where their workers’ healthcare coverage is provided by the government, is good for their bottom line.

2. The Germans are also baffled by “the continued portrayal of U.S. President Barack Obama and his health reform backers as socialists and communists.” This seems especially strange to them because their own national healthcare system was first introduced by Otto von Bismarck in the 19th century — and he was anything but a leftist. None of the Western European nations, Canada nor Japan are communist, nor are they in any danger of flying the hammer-and-sickle flag. On the contrary, their well-capitalized private corporations provide American industry with some of its stiffest competition.

3. Our first-world neighbors also find it strange that we Americans clamor for the right to radical individual choice in matters related to healthcare — as we have seen, in recent months, in the agita over the President’s ill-considered remark, “If you like your health insurance, you can keep it” (while failing to mention that he wasn’t talking about junk policies). Insurance companies have long recognized that the larger the risk pool, the more secure the coverage they can provide. That’s why even they — despite their professed opposition to the Affordable Care Act — quietly insisted that the Act include a required-coverage mandate.

4. Looking at the biggest of big pictures, the Germans also wonder how it is we fail to recognize how the health of every member of a society has an impact on the overall well-being of that society. An expatriate American who owns a couple of Berlin cafés puts it concisely: “The basis for everything is people’s health, not just your own health but the health of your neighbor.” It’s like the oft-quoted words of the Christian preacher and poet, John Donne:

No man is an island,
Entire of itself,
Every man is a piece of the continent,
A part of the main.
If a clod be washed away by the sea,
Europe is the less.
As well as if a promontory were.
As well as if a manor of thy friend’s
Or of thine own were:
Any man’s death diminishes me,
Because I am involved in mankind,
And therefore never send to know for whom the bell tolls; 
It tolls for thee.

Much of Donne’s written work was produced amidst a protracted public-health crisis, a series of plagues that decimated London’s population. What these gruesome plagues taught him is that, regardless of whether or not he or his family personally fell ill, the quality of their own lives was reduced as a result. We Americans love our individualist philosophy, by which we imagine we can withdraw into a gated community and hold the world at bay, but in matters of health this is simply impossible. We are all connected in community. If a neighbor suspects she has breast cancer, but delays going to the doctor because she doesn’t want to get diagnosed before she is insured, and dies as a result — as happened to one of my parishioners — it is a blot on all of us that we allowed such a travesty to happen. Actually, it wouldn’t happen today, because the Affordable Care Act has eliminated pre-existing-condition exclusions, but those who would love to simply trash Obamacare are — whether they realize it or not — advocating a return to those bad old days.

5. Finally — and surprising to some, no doubt — the residents of these highly secularized European countries detect a reek of hypocrisy among us Americans, who claim to be so religious but who callously ignore the mandate of “love your neighbor” that is foundational to nearly every religion. A conservative German politician puts it this way: “The question of health insurance is a humane question. I want every person — independent of age, independent of income or pre-existing conditions — to have the possibility to be helped when he is sick.” Any serious student of the earthly ministry of Jesus Christ must admit he spent a large portion of his time healing the sick. How is it that so many of us, who so proudly claim to follow him, turn in disgust from the most effective means of healing the greatest number of people: taxpayer-provided, single-payer healthcare? Yes, it would cause everyone’s taxes to go up. But please show me how it is possible to claim, based on the scriptures, that Jesus cares more about low taxes than he does about sick people. That’s the hypocrisy even secular Europeans can see, but which we ourselves so often miss. By no stretch of the imagination are we American Christians taking Jesus seriously if we value low taxes higher than the lives of our neighbors.

If we Americans are truly a Christian nation, even the most overtly Christian nation on earth (as so many conservatives are quick to claim), then how is it possible that “the U.S. ranks last out of 16 industrialized countries on a measure of deaths that might have been prevented with timely and effective care”? Can we in any way call ourselves Christians, and let such an obscenity continue?

The simple truth is that these secular Europeans, Canadians and Japanese see healthcare as a moral issue, while we Americans — who so fondly gaze upon stained-glass images of Jesus the healer — do not. It’s time we changed that.

Healthcare for all is not a political issue. Even these single-payer secularists know it is a moral issue. How can we fail to see it?

Saturday, February 22, 2014

February 22, 2014 — The French Way of Cancer Treatment

Today’s title is borrowed from a provocative Reuters blog posting by Anya Schiffrin, who describes her family’s experience in bringing her father to France from New York, to receive treatment for pancreatic cancer.

Now that may sound incredible to many Americans, because of what we’ve long been taught about our healthcare system. Doesn’t everybody know our healthcare is the best in the world? Why would anyone forsake Memorial Sloan-Kettering — a destination renowned worldwide by those lacking adequate healthcare in their own countries – for treatment on foreign soil?

Well, part of the reason is that Anya’s father, the writer Andre Schiffren, is a native of France (and presumably still a French citizen), who’s used to spending part of each year in that country. He insisted on going to France as usual, and his family gave in to his wishes. After some initial skepticism, they learned that healthcare in France is much easier — and cheaper — to obtain.

Anya compares the grueling all-day experience of bringing her father to Memorial Sloan-Kettering for chemotherapy — which required hours of idle time in waiting rooms — with the much more patient-friendly French system:

“So imagine my surprise when my parents reported from Paris that their chemo visits couldn't be more different. A nurse would come to the house two days before my dad's treatment day to take his blood. When my dad appeared at the hospital, they were ready for him. The room was a little worn and there was often someone else in the next bed but, most important, there was no waiting. Total time at the Paris hospital each week: 90 minutes.

There were other nice surprises. When my dad needed to see specialists, for example, instead of trekking around the city for appointments, he would stay in one room at Cochin Hospital, a public hospital in the 14th arrondissement where he received his weekly chemo. The specialists would all come to him. The team approach meant the nutritionist, oncologist, general practitioner and pharmacist spoke to each other and coordinated his care. As my dad said, ‘It turns out there are solutions for the all the things we put up with in New York and accept as normal.’”

OK, this is all about patient convenience, some may observe. What about the quality of care, the access to cutting-edge treatments?  There’s an answer for that, too:

“When the gemcitabine stopped working, the French oncologist said he would put my dad on another drug — one my dad’s U.S. insurance plan had refused to approve in New York.”

The cost to the patient for all this high-tech care? Next to nothing. Except for small co-payments (example: 18 euros for a doctor’s office visit), it was nearly all funded by the French taxpayers. It included house calls from nurses and the free loan of a wheelchair.

This approach has a staggering effect on overall healthcare costs:

“I had read many articles about the French healthcare system during the long public debate over Obamacare. But I still I hadn't understood fully, until I read this  interview in the New York Times, that the French system is basically like an expanded Medicaid. Pretty much everyone has insurance, it explained, and the French get better primary care and more choice of doctors than we do. It also turns out, as has been much commented on, that despite all this great treatment, the French spend far less on healthcare than Americans.

In 2011, France's expenditure on health per capita was $4,086, compared to $8,608 in the United States, according to the World Health Organization. Spending as a percentage of gross domestic product was 11.6 percent in France while in the United States it was a far higher 17.9 percent.”

Bottom line? We’re simply not getting good value for our healthcare dollars. There are too many people in our system — insurance executives, medical coders, financial clerks — standing there with their hand out. These people aren’t providing care, nor are they even supporting it. They’re supporting the powerful corporate interests who are deeply invested in siphoning off profits.

These corporate interests command a powerful public-relations machine that continually spews out lies about the alleged wastefulness and poor quality of publicly-provided, taxpayer-funded, single-payer healthcare in other countries.

Those like the Schiffrin family, with real experience of the best of those systems — France, Japan, Canada, Britain — tell a very different story. Sadly, it’s a story few Americans get to hear.







Monday, January 27, 2014

January 27, 2014 - Never Off-Duty

Today I run across a blog posting by a fellow lymphoma survivor, Ethan Zone. He reflects on how difficult it is for anyone who hasn't walked this particular road to know what it's like to live through months and years of survivorship, following treatment.

Most people, he says, think the battle is over when that blessed word "remission" first falls from our doctor's lips. But that's not so. It's something like a Cold War that only begins after the "hot war" ends:

"The general perception of cancer – especially in this rugged-individualist, pull-yourself-up-by-your-bootstraps country – is that there are winners and losers. We prefer to see it like a football game: you either beat cancer and win the Superbowl; or you lose to cancer, and sayonara, shiny trophy/life! There is no in between. The reality of my situation is that I did everything in my power to beat cancer, and I did. But the cancer came back, and my life got blown apart at the seams all the same. And I think that’s okay, too. There are millions of people out there living with cancer, longing for stability, and functioning with the reality that this horrible disease may come back."

Many of us assemble posses during the active phase of our treatment. Good people present themselves - family and friends - to help us with chores, offer us rides, pray for us, offer encouragement. These are some very special people, whose positive effect on our struggle with the disease is incalculable. Yet, there comes a time - for those of us who do achieve remission - when most of them slip away, with a smile on their faces.

That's as it should be. There are others who need their help more. Yet, few realize that, for the patient, the struggle isn't over. It's only entered a new phase:

"I have come to realize, however, that people tend to join your regiment during the arms race build-up between a cancer diagnosis and the execution of the treatment protocol. But afterwards, once the immediate danger (as they presume it) has passed, they tend to forget all about the 'war,' their shiny 'weapons,' and they slip back into their normal, civilian lives. And my point isn’t that they are thoughtless, because they aren’t. They just don’t know. But those of us who do know don’t forget. The psychological hangover is long and dark. Of course good news deserves a euphoric dance party, but it’s important to remember the post-remission patient because there are dump trucks full of uncertainty and invisible scars that need healing."

I've never been fully sure whether or not I'm in remission. Eight months after my last chemo treatment, in 2006, some signs of returning cancer started showing up in my scans. Dr. Lerner was able to see some low-level recurrence, but he assured me that what I have left is an indolent form of the disease, and the most appropriate response is to "watch and wait." This we did for the next several years, merely noting the new tumors on the scans - until, 2 or 3 years ago, the hot spots stopped showing up altogether. And still we watch and wait, even if there's no longer anything to watch.

Were these just scan anomalies? Or did my out-of-remission cancer simply slip below the radar, where it's still indolently lurking, ready to return someday?

No one can say. It's been more than 7 years, now, since my treatment ended. The old conventional wisdom is that after 5 years of no recurrence, you're "cured." Yet, I've been told that particular "c-word" can never be applied to my situation - because indolent cancers, by definition, are very good at hiding. Sometimes, for long periods of time. Which means you never feel like you're completely out of the woods.

Thanks to Ethan, for describing it so well.

Thursday, January 09, 2014

January 9, 2014 — Who Am I?

Today I read an article by my friend and seminary classmate Kathleen Long Bostrom (“Identity Crisis,” Horizons, The Magazine for Presbyterian Women, January/February 2014). It speaks to where I am right now, in these days of recovery.

Kathy’s writing about what it feels like to take early retirement, for medical reasons. (She’s been dealing with a chronic obstructive lung disease for some years now.) Kathy had been serving as a co-pastor alongside her husband, Greg Bostrom. He continues in the pastoral role, in the same church. She’s now devoting her attention to her part-time writing career (she’s an acclaimed author of religious children’s books).

In my case, no one’s talking about retirement. The breathing difficulties caused by my matched pair of pulmonary emboli are expected to diminish in time. I fully expect to return to full-time pastoral work when that happens — but for now, I’m on temporary disability from my work at the church. With the three hospitalizations I’ve had this fall and winter (the most recent ending on December 28), I’ve had a few setbacks of the two-steps-forward-one-step-back variety.

Back in 2006, when I was receiving chemotherapy for non-Hodgkin lymphoma, I was also dealing with a kind of disability. But, that was different. With a once-every-3-weeks chemo cycle, I could anticipate one week of being out sick, a second week of moderate energy, and a third week of relatively normal functioning. I never did go on full-time disability.

It’s different this time. The blood clots in my lungs restrict my breathing, meaning I get winded very easily — even after the relatively minor effort of climbing a flight of stairs. I’m making progress with my outpatient physical therapy, but it’s slow (especially since each hospitalization has led to some deconditioning, setting me back a few spaces on the recovery gameboard each time).

The nature of pastoral ministry is such that it’s hard to step back from full-time to part-time. As far as the congregation is concerned, you’re either back or you’re not. I’ve received advice from numerous people not to attempt part-time ministry. It’s hard to set reasonable limits. It’s easy for a task-oriented person like me to overwork. Also, the congregation tends to think that, if they see you up in front, leading worship, many will assume that you’re back 100%, even if you’re not.

I asked my pulmonologist, Dr. Gustavo De La Luz, how long it will be before the emboli dissolve, and he said the average is 3 months. I’m coming up on that date at the end of this month, and I have noticed some modest improvement. The last scan I had at the hospital showed one embolism has gotten smaller.  But I’ve also had unusual complications: the big internal bleed I had during my first hospitalization, and two incidents of temporary kidney failure, caused by the CT-scan contrast dye (which my body can evidently no longer tolerate).

The result is that my disability is frustratingly open-ended. No one can predict with any accuracy when I’ll be ready to return to my pastoral duties. Recently, I’ve been advised to fill out the Presbyterian Board of Pensions’ disability paperwork, so that — if I’m still sidelined when I hit the 90-day anniversary of my diagnosis at the end of this month — I can begin collecting a temporary disability pension (which would save the church two-thirds of the salary they’ve graciously continued to pay me).

I learned years ago that, if there’s any advantage to receiving chemotherapy for lymphoma, it’s that the treatment’s progress is tightly regimented. With one treatment every three weeks, there was a predictable “chemo cycle” governing how sick I could be expected to feel.

Not so with this pulmonary embolism thing. The clots will dissolve when they dissolve. No one can predict how long that will take. Nor can anyone predict how fully the lungs will recover after the clots are gone. Some patients find that some of their lung tissue has become “necrotic,” after all that time deprived of oxygen from the bloodstream. That essentially dead lung tissue will never recover. No one can predict how much necrotic tissue there is, nor how it will affect my long-term recovery. The deep-vein thrombosis in my leg (for which I’m being treated with the anticoagulant, Coumadin) also bears careful watching. I’m wary of the possibility of another hematoma, even though I’m on just one anticoagulant rather than two, and I’m being carefully monitored by a hematologist (my oncologist, Dr. Lerner).

During my cancer treatments, I was able to make some modest plans around the ups and downs of the chemo cycle, that’s not possible in this case. I’m living day-to-day, pursuing a recovery of indeterminate speed and duration.

I can vividly remember the experience, on Easter Day, 2006, of looking across the street from my bedroom window, sick as a dog from my most recent chemo treatment, watching the congregation arrive for worship in all their Easter finery. It was a strangely disjointed feeling. It felt unnatural not to be there.

With my present pulmonary difficulties, that’s my experience every day.

Which brings me, at long last, to Kathy’s insightful article. She admits to feeling a certain kind of “identity crisis” as she transitions into early retirement — becoming no longer one of the church’s pastors, but merely the pastor’s wife.

“Who am I,” she writes, “now that I am no longer the pastor? Who are any of us, apart from the labels that define us, that can be cumbersome, even limiting, but that also give us a sense of identity and purpose?”

Musing on the experience of serious illness, she observes how we can “lose our intrinsic identities even further and become ‘a cancer patient,’ rather than ‘Joan, who happens to have cancer.’”

When I was in the hospital, I wore a plastic ID bracelet with my name, my birthdate and a bar code on it. Every time a nurse came in to give me medication, or a technician to draw blood or give me a breathing treatment, I would be asked to repeat my name and birthdate, so the hospital employee could check that information against my bracelet. Then, the person would scan my barcode with a little handheld device. This was for medical-records purposes, but I was also aware that it was related to the hospital’s billing process. It was the medical equivalent of waving a box of Cheerios over the bar-code scanner at the supermarket checkout. Every pill I swallowed, every new bag of IV saline solution, had its price.

In the hospital, the uniformity of my hospital gown and the ubiquitous presence of my ID bracelet proclaimed that my identity, as a patient, was pretty much limited to my medical condition. Pastor, husband, father, friend — all those roles diminished to secondary importance. Name, birthdate, barcode: those were my new identifiers.

Now that I’m home, and my main activity is getting better, it still doesn’t feel all that different. Many of those things I used to do, by which I defined myself, aren't part of my life at the moment. Even with family relationships, things have changed. I no longer do many of the things I’m used to doing as husband and father. Others must do some of those things for me.

Kathy quotes a little poem by theologian and martyr Dietrich Bonhoeffer, “Who Am I?”, which concludes with these words:

Who am I? They mock me, these lonely questions of mine.
Whoever I am, thou knowest, O God, I am thine.

Kathy then goes on to observe: “I am who I have been from the very beginning: I am a child of God. That has never changed. It is who I will always be, even though that identity has gotten lost in the shuffle of my labels. First and foremost, now and always, I am a child of God, which is what we all are, no matter the labels that have stuck to us over the years.”

Maybe that’s the lesson God is teaching me, through this protracted recovery. Ministering to the dying and their families, I've experienced the truth of the old cliché: “No one ever says, on their deathbed, ‘I wish I’d spent more time at the office.’” We're not defined by what we do, but by who God has created us to be.

Kathy’s right. At the end of the day, “child of God” is what we are. All of us.