Saturday, December 29, 2012

December 29, 2012 — A Donor’s Story

Here’s a story that makes me feel good — especially so, since I could potentially be on the receiving end of this sort of generosity someday.

These words were spoken by William Hudson, a CNN producer, after making a bone-marrow donation to save the life of a total stranger:

“I knew that no matter how much time and money I did or did not donate to nonprofits and charities doing important work, this was different. Here was a patient with a blood cancer whose particular immune system resembled my own. Turns out I, among potentially everyone in the world, was in the best position to save her life. It’s an awesome responsibility and opportunity.”

The most important thing, in making this sort of life-saving difference for someone else, is to join the national bone marrow registry. As Mr. Hudson explains it:

“Joining is a small time investment — all it takes is a few cotton swabs of saliva — but understandably seems to have no payoff. The chances of ever becoming a donor are only about 1 in 540.... I was on the registry for five years before I received a potential donor letter.”

According to the article, should a member of the network be selected as a donor, there are two ways the necessary stem cells can be harvested: an actual bone-marrow harvest (a minor surgical procedure), or the much easier peripheral blood stem cell donation, or PBSC — which is not much more difficult than taking a pill for five days, then donating blood. Procedures have improved to such a degree in recent years that, for most adult recipients, either procedure works well. In the case of some children, an actual bone-marrow donation is preferred.

I’ve had the preliminary tissue-typing done at the Hackensack University Medical Center so that, should my indolent lymphoma flare up in a dangerous way, I could receive a bone-marrow donation. I’ve struck out with both my brothers — both were tested, but were not good matches for me — so in that event I’d be dependent on an anonymous donor. According to the best medical science today, the only potentially curative treatment for the sort of lymphoma I have is a transplant (although at this time, when my disease appears to be dormant, the potential side effects outweigh the advantage of seeking a transplant).

Becoming a donor — even joining the registry — is a beautiful thing.  To find out more about joining the registry, go to

Thursday, December 27, 2012

December 27, 2012 - Profit Centers

If you’re a cancer patient who has received chemo treatments in your doctor’s office, here’s an article that may give you pause.  It’s a Reuters article by Andrew M. Seaman, dated yesterday: “Some cancer docs say their income tied to treatments.”

As the article makes clear, it’s not a question of whether oncologists actually do make more money administering treatments in their offices (as opposed to referring patients to a hospital’s outpatient clinic). The question is whether the doctors THINK they do.

If they do think that’s the case, then there’s the potential for a disturbing conflict of interest.

Here’s the $50,000 (or more) question: “In the case of oncologists who also run chemo clinics, what takes first priority in their minds — the medical necessity of a given round of treatment or their potential to realize a higher profit?”

I’d like to think most doctors are above such venal considerations. Yet, I’m also enough of a Calvinist to believe no one is immune to that sort of temptation. Better to eliminate the temptation, I say, than to count on human nature to always pursue the most ethical course, when there are pecuniary considerations at work.

Speaking for myself, I have to say I still have great personal confidence in Dr. Lerner, my oncologist, even though he and his colleagues in the medical group do own a chemo clinic (where I did, in fact, receive my treatments). That’s because of a certain experience I've had. When, just after my R-CHOP chemo treatments had ended, the question came up about the advisability of maintenance Rituxan treatments in my case, Dr. Lerner recommended against it. He said, at the time, that in his view the body of research was still not there to declare that this was, indeed, the right thing to do.

I do realize it’s now over 6 years later, and the results of some more recent clinical trials would perhaps lead my doctor to give different advice today, but  the important thing, to me, is that he declined on medical grounds to recommend that expensive treatment that would have put more profits in his pocket.

It’s these very same maintenance Rituxan treatments, that can continue monthly for many years after initial chemo treatment, that some doctors refer to as their “Rituxan retirement plan.”

The historic pattern, with most medications, is for doctors to write a prescription and for a pharmacy to fill it. Unless the doctor also happens to own the pharmacy, there’s no conflict of interest. When doctors own outpatient chemo clinics, however, it’s as though the doctor owns the pharmacy.

The same is true for the “outpatient surgi-centers” that have sprung up all over the place — which are typically owned by the very same doctors who refer patients to them (and, in most cases, perform the surgeries as well). They’re essentially little freestanding, specialized operating-and-recovery rooms. They make it possible for patients to undergo outpatient surgery, complete with general anesthesia, without ever setting foot in a hospital. (An ambulance is permanently parked out back, to whisk patients to the hospital, should complications develop.)

The problem — for non-profit hospitals, anyway — is that the for-profit surgi-centers siphon off many of the operations that typically bring in more money than they cost to perform. This leads to underused hospital operating-rooms and a corresponding decline in hospital income. The hospitals, then, are stuck with paying all the costs of operations and outpatient treatments for uninsured or underinsured patients, who would never make it through the door of the doctor-owned facilities.

At the very least, I think you’ll agree: this is something worth pondering, right?

Friday, December 21, 2012

December 21, 2012 - Good News on the Lymphoma Research Front

Here's an encouraging article about developments in treatment for Follicular Lymphoma - a few years old now (2008),  though I hadn't seen it before. I may or may not have that type of NHL now - my biopsy tissue samples were pretty small, so the docs can't say for sure whether the indolent lymphoma I now have, post-chemo, is the Follicular type, or some other variety of small B-cell lymphoma.

In any event, I take this to be positive news for my situation:

Natural History of Follicular Lymphoma Changing for the Better

LUGANO, Switzerland-The prognosis for patients with follicular lymphoma has greatly improved over the past decade, and oncologists/hematologists should tell their patients to be optimistic. So said James O. Armitage, MD, in his John Ultmann Memorial Lecture here at the 10th International conference on Malignant Lymphoma.

Improved treatments are the main reason for increased survival, particularly immunotherapy, said Dr. Armitage, Professor of Internal Medicine in the Section of Hematology/Oncology at the University of Nebraska Medical Center. Our treatments are getting better, and there is a subset of patients, albeit small today, who survive for a very long time free of the disease. Patients in that subset may actually be cured of follicular lymphoma, and we can hope with our patients that they might be in that group.

Dr. Armitage's presentation took the audience through studies and analyses all pointing to the fact that the natural history of the disease is changing for the better.

He concluded that clinicians should take advantage of the new treatments: "Based on data I showed today, a new patient should always be treated with some form of passive immune therapy, if the drug is available. For most patients that would be rituximab, because there is really striking data that that improves survival."

He added that some data show that rituximab should be included in the initial therapy for follicular lymphoma, but he said that issue is not completely resolved.Despite the fact that we know much more about this disease than we did in the past, there is still very much to be learned, and we should encourage our patients whenever possible to participate in clinical studies.Dr. Armitage said many oncologists believe follicular lymphoma to be a fairly simple disease to diagnose and treat. Survival is long, and patients respond to many different therapies and continue to respond after relapse unlike in many other malignancies.

For the rest of the article, go to the source of the story, the website of the British medical journal, Oncology Times.

Wednesday, November 14, 2012

November 14, 2012 - Of Sandy and Other Hurricanes

We’ve been having quite an experience around here, living through Hurricane Sandy. We live six blocks from the Atlantic Ocean in Point Pleasant Beach, New Jersey. We were never evacuated, and the storm surge never reached our house, but those to the east of us didn’t fare nearly so well. The area east of the NJ Transit railroad tracks (just two blocks from our house) was evacuated. Not much further along the road was the high-water mark. Not too much further than that, there was three or four feet of water inside the houses.

No one remembers a storm this bad. Not even Vince, a 94-year-old member of our church. I asked him, and he was very clear in confirming that this is the worst he’s ever seen.

We had no electricity for five nights. Some in our community still haven’t gotten it back.

Fortunately, I invested in a battery pack for the Bi-Pap machine I use to sleep at night (for my obstructive sleep apnea). I’d purchased a small generator after Hurricane Irene, and that was sufficient to charge the battery pack and our cell phones, as well as run a mini-refrigerator.

One aspect of the storm that didn’t occur to me until much later was how Dr. Lerner’s oncology practice fared.  He and his colleagues run a chemo suite out of their office.  No power means no IV drips, and with no IV drips (and no power to run the refrigerators where certain medicines are kept), there are no chemo treatments.

I knew something was up on my most recent follow-up visit, when I noticed the office staff still had their Halloween decorations up. Holiday decorations are a big deal at the Atlantic Oncology/Hematology office. I suppose it’s something the nurses and technicians do to try to boost patient morale.

I was in the office on November 9. That’s more than a week after Halloween. The fact that the staff left the decorations up for so long is a sure sign that they’d been preoccupied with much weightier matters.

I confirmed the same when I got in to see the doctor.  I asked Dr. Lerner how they’d managed, and he confirmed that it was pretty chaotic.  Some of the sicker patients under the group’s care they had admitted into the hospital. Others simply had to miss their chemo treatments for nearly a week — not a good situation, but with the power failures so widespread, there was nowhere else (except the hospital) where those patients could have been taken, in order to stay on their treatment schedule.

That’s something folks rarely think about when making the decision about where to receive their chemo treatments. Hospitals have emergency generators, but I’m not sure if the outpatient chemo suite rates that jolt of extra power.

Just a few days ago I attended an educational event sponsored by the Leukemia and Lymphoma Society. The organizers of this evening conference asked me to participate in a panel discussion on survivorship issues.

I was struck, as I sat down to dinner with my fellow cancer survivors, that no one was talking about Hurricane Sandy — even though it had been just about the only topic of discussion everywhere else. It seemed ironic to view a discussion about cancer to be less anxiety-ridden than one about cancer.

There’s an instant communion when two cancer survivors come together. Once we share our diagnoses and staging with one another, and possibly a little bit of the story of how we were diagnosed we just know we’re simpatico.

The hurricane wasn’t far from my mind, though, as I briefly shared the story of my experiences. I told my fellow survivors and their families that the experience of diagnosis is not unlike that of living through a hurricane.

It actually takes quite a while for most people to be diagnosed for certain.  In my case, it was about two months since my first suspicious-looking ultrasound and the sit-down in Dr. Lerner’s office, when he informed Claire and me that I have cancer. In between, there were various scans, then minor surgery to obtain the biopsy samples, then a week or so while we waited for the pathologist to analyze the results.

In the case of a hurricane, there’s also a whole lot of waiting beforehand. Everyone knows the storm is coming, but most of us take our time about preparing for that eventuality.  Denial is often a factor.

As the hurricane barrels along the coast, getting closer by the hour, everyone nervously awaits each test result, each piece of information, that can she some light on the situation.

That is, until all the lights go out. The darkness can seem interminable under those conditions. In the darkness there is chaos and confusion and a group of people rapidly scrambling to get back in touch with the only reality they’ve ever known. Yet, that reality never returns.  Because the new normal is the order of the day.

As we lived through those days without electrical power, that was our new normal. We adapted. We did what had to be done. We survived.

A cancer diagnosis is a perfect storm.  I’m living testimony that there is plenty of life on the other side of that life-changing experience

Sunday, October 21, 2012

October 21, 2012 – Death of a Cancer Treatment Pioneer

Today, I run across an obituary for a true cancer treatment pioneer, Dr. E. Donnall Thomas, who died at age 92.

I’d never heard of Dr. Thomas till I read his obituary, but I’ve certainly heard of the procedure he perfected: the bone-marrow transplant.  He shared the 1990 Nobel Prize in Medicine for this work.

His obituary in today’s New York Times includes this:

“When Dr. Thomas began his research in the late 1950s, bone marrow transplants were seen as a frightening last resort. Patients suffered dangerous complications from the procedure, and survival rates were grim. The patient’s immune system would either destroy the transplanted marrow as foreign, or the transplanted marrow, which contains immune system cells, would destroy the patient's lungs, kidneys and other organs.

The only successes were in identical twins because their tissue types matched.

Many physicians abandoned the approach, believing that bone marrow transplantation would never be safe enough to be practical. Dr. Thomas persevered, despite numerous failures and the criticism that he was exposing his patients to undue risks....”

Dr. Thomas’ story reminds us of how difficult cutting-edge cancer research can be.  Sometimes – as was his experience – repeated setbacks lead some researchers to give up on a specific strategy. In such an event, only the truly committed remain in the game.

It takes a certain mix of confidence, stubbornness, and gutsy perseverance to continue to tweak the experimental treatment protocols until obstacles are finally overcome and success is achieved.

Before gladiatorial contests in the ancient Roman coliseum, the equivalent of playing the national anthem was for the combatants to stand before the Emperor and say “We who are about to die salute you.”

There are a great many cancer survivors who could very well bid farewell to Dr. Thomas with a slight variation on that theme: “We who are not about to die salute you.”

A big thank-you to all who persist in the field of cancer research, despite setbacks!

Tuesday, October 16, 2012

October 16, 2012 – Time to Close Down the Floating Medical-Insurance Crap Game

“We all make mistakes, and a humane government tries to compensate for our misjudgments. That's why highways have guardrails, why drivers must wear seat belts, why police officers pull over speeders, why we have fire codes. In other modern countries, Scott would have been insured, and his cancer would have been much more likely to be detected in time for effective treatment.

Is that a nanny state? No, it's a civilized one.”

The writer is the New York Times’ Nicholas Kristof. His subject is his college roommate, Scott, who just died of too-late-diagnosed prostate cancer.

The reason Scott waited so long to go to the doctor?  Lack of insurance.

The reason he didn’t have insurance? Because he was between jobs, and couldn’t afford to buy insurance on the open market. As Scott himself wrote:

“I didn't buy health insurance because I knew it would be really expensive in the individual policy market, because many of the people in this market are high risk. I would have bought insurance if there had been any kind of fair-risk pooling.”

I know other people who could tell similar stories. The one that comes most clearly to mind is a fortysomething single mother of 3, who discovered a lump, figured it was probably cancer, but didn’t go to the doctor because she was sure that, if a cancer diagnosis ever got recorded in her medical file, no company would be willing to insure her, ever again.  Instead, she immediately took steps to get into an employment situation with benefits, but that took a while.

By the time she finally did get back into a job with medical insurance a few months later, and saw a doctor, her unusually aggressive cancer had progressed much farther than she’d ever imagined.

The doctors are trying every desperate measure they can think of, but the bottom line is, she probably doesn’t have long to live. With an earlier diagnosis, things could have turned out differently.

She told me later she’d known she was gambling with her life. If she’d had one of the slower-moving cancers, she probably would have won the crapshoot. She would have had her cake and eaten it, too — avoiding utter financial destitution and getting reasonably timely and successful treatment, besides. She just didn’t bank on her odds being as bad as they were.

She was thinking about being able to afford college for her kids, when she should have been thinking about her own survival.

Not the wisest decision, in retrospect.  But, as Nick Kristof points out, how on earth can a civilized society expect a profoundly frightened person who’s just discovered a suspicious lump and has no experience dealing with cancer, to make a cool, calm, balanced and wholly rational cost-benefit analysis?

This is why the American Cancer Society now considers lack of insurance to be a risk factor for cancer. Just like cigarette smoking and working in an asbestos factory.

This is why those who are clamoring for the repeal of Obamacare are either deeply immoral individuals, or are deluded in thinking there is no moral dimension to this issue.

It’s a moral issue precisely because, if Obamacare is repealed, people like these two individuals will die needlessly.

What we really need is national, single-payer health insurance for everyone. Just drop the qualifying age for Medicare to zero. It’s as simple as that. And if Grover Norquist doesn’t like the tax increase that will be necessary to pay for it, patriotic Americans ought to shun him like the corrupt political boss he is.

Obamacare doesn’t go nearly far enough. But for now, it’s all we’ve got.

It sure beats the alternative.

Saturday, October 06, 2012

October 6, 2012 – Thank God for Cancer?

When I saw a Huffington Post article by an Episcopal priest titled “Thank You, God, For Cancer,” of course I had to read it. I discovered something of a kindred spirt: a fellow pastor like myself, who’s also a cancer survivor — and who, like me, found the cancer experience to have been formative in some ways she never could have envisioned.

Catherine B. Dempesy, rector of Good Shepherd Episcopal Church in Buffalo writes, of her experience with breast cancer that began two years ago this month:

“Because of cancer I learned lessons I didn't know I needed to learn. Because of cancer I discovered a depth of love, faith and gratitude I never knew existed. Because of cancer, I learned that bad news is best handled when infused with the Good News. The Good News of Faith, the Good News of Love, the Good News of Gratitude.”

Not that her journey was easy:

“Cancer is not for sissies. Cancer is not fun. Cancer stinks. But through the grace of God and the power of prayer and the faith of a community, cancer made me a better priest, a better pastor, a better person.”

Mostly, the note she sounds, this side of the acute treatment phase of her disease, is that of gratitude.  Thank you, God, for having world-class treatment facilities close at hand. Thank you for doctors who know what they’re doing. Thank you for supportive family, community, church.

“Thank you” is the message I sound as well. Not “Thank you that I got it,” but “Thank you that the experience has been such a powerful — although stern — teacher for me.”

And, it still is.

Wednesday, September 05, 2012

September 5, 2012: No Other Name For It: Our National Disgrace

I saw an exchange on Facebook this morning about a much-publicized case from a year ago, about a homeless woman named Anna Brown. She died in jail immediately after refusing to leave a hospital emergency room near St. Louis, Missouri, where she had gone seeking treatment for a pain in her ankle. It turned out she had a case of deep-vein thrombosis. The blood clot in her lower leg  - which could have been identified by a  simple ultrasound test the hospital didn't give her - broke off, made its way to her lungs, and led to an agonizing, painful death on the floor of a jail cell. Then, she was taken back to that same emergency room, where she was pronounced dead.

The graphic video of her death was captured on a jail-cell security camera, and subsequently publicized by the St. Louis Post-Dispatch newspaper.

The video consists of four segments. First is from a hospital security camera, showing Ms. Brown on a gurney, awaiting transportation out of the hospital. Second is some footage from inside a police car, showing her complaining of pain and asking for a wheelchair that evidently isn't available, then the police officer and a jail employee carrying her from the car. Third is from a camera in her jail cell, showing her being carried into the cell, moaning in pain, then being left on the floor - right next to a bed the corrections officers didn't even lift her onto.  Fourth is a brief conversation, after her body had been removed, between the Richmond Heights, Missouri fire chief and a corrections officer, explaining that the reason the hospital staff had sent her to the jail was because they thought hers was a case of drug abuse.

No doubt, Anna Brown had a lot of problems. Her home was destroyed by a tornado, she lost her job in a fast-food restaurant and her two children were given over into their grandmother's care under the condition that Anna not live with them. It may well have been that she had some history of mental illness and/or drug abuse. Yet, the bottom line is that she was a human being, who presented herself at a hospital emergency room in pain, refused to leave after the hospital declined to treat her, and subsequently was physically carried to the floor of a jail cell where she died. Many have already commented on how her story is a case study of how our dysfunctional healthcare system fails the most vulnerable in our society.

Now, here's the greatest irony of all. The Richmond Heights, Missouri hospital that refused to treat Ms. Brown, St. Mary's Health Center, is a Roman Catholic institution, sponsored by the Franciscan Sisters of Mary. The mission statement on the hospital's web page reads as follows:

"Through our exceptional health care services,
we reveal the healing presence of God."

About the non-profit holding company that manages this and seven other hospitals, SSM Health Care - St. Louis, the website says:

"In accordance with the philosophy of the Franciscan Sisters of Mary,
we value the sacredness and dignity of each person.
Therefore, we find these five values consistent
with both our heritage and ministerial priorities:
Compassion, Respect, Excellence, Stewardship, Community."

This is not only a Roman Catholic hospital, but a Franciscan hospital. It's owned by one of the orders in the tradition of St. Francis and St. Clare, whose mission is specifically focused on sacrificial caring for what Jesus calls "the least of these."

Obviously, Ms. Brown's case is a massive failure of both the healthcare and the law-enforcement systems. Her death has touched off another round in the debate about single-payer national healthcare. It points out how the economics of our present system lead to sick people being neglected, even forcing religiously-based hospitals to join together in massive holding companies, like SSM Health Care, where they lose sight of their mission.

But, some will counter, a national health system would result in an even bigger conglomerate, where patients would be treated even less personally - wouldn't it?

Not true - at least not for the needy among us - as borne out by this testimony from a woman named Rebecca, who has personal experience living under Britain's National Health System. She shared it on Facebook, commenting on a posting by Jean, a minister friend of mine, about Ms. Brown's case:

There is very little overcrowding in the A&E (what the UK calls the ER) because people have regular access to a GP. From what I understand, a lot of the overcrowding in ERs is due to people going to the ER because by law they have to be seen, wheras a GP can turn you away if you do not have insurance. In the UK, everyone has insurance through the NHS - even an immigrant like me. The NHS, contrary to popular belief isn't solely funded through paycheque tax deductions. A Good portion is funded through sales tax (VAT in the UK), so everyone contributes something to it regardless of their employment status.

The NHS also has a service called the NHS Direct which can put you in touch with a nurse 24 hours a day to answer any questions you have. This nurse will then help you determine if you need to go to A&E, if it's safe to wait until morning to call your regular GP, or if you should make an appointment with the after hours/on call GP. All of this is done free of charge, inluding seeing a GP at 2 in the morning or speaking to a nurse at 5. When I was recently on holiday (vacation) in Wales, I needed to use the NHS direct service when I fell ill (got sick, sorry. My vocabulary has shifted largely to UK English!) and they were able to get me an appointment at a local GP.

I was diagnosed with Type 2 Diabetes this past March after having blood work done for something unrelated. Since then, I have had three further blood glucose tests, seen a diabetic specialist nurse, a dietician, a diabetic eye specialist, a podiatrist, and I have an appointment with a diabetic ob/gyn speciaist at the end of this month. Would any of this have happened if I were still in the US? Probably not, unless I had loads of money to pay for all the specialists. 

The NHS saved my father-in-law's life when he needed a kidney transplant 6 years ago and his kidney was donated by my mother-in-law. My husband's little brother had Leukaemia in the late 70s/early 80s. My in-laws would have been unable to pay for the level of care that he needed, but the NHS was there and his little brother beat cancer, but sadly died after contracting pnemonia due to his weakened immune system. My husband's grandmother was in hospital for 6 months before her death, and instead of being worried over who was going to pay the hospital bills, our family was able to celebrate her life. Grandad is still going strong at 95 thanks to his NHS care, which includes a carer who comes to his house daily to assist with dressing, bathing, and other daily functions he is unable to do for himself. By coming to his house it enables him to remain at home instead of a care home and has undoubtedly contributed to his longevity.

Oh, and if you're worried about not being seen right away because of the "long waits", you don't have to. The NHS operates on a priority system based on needs, not when you get put in the queue. You also can purchase US-style private insurance and see private doctors and specialists sooner if you really don't want to wait.

In the US, young women pay out anywhere from $20 to $60 per month for birth control. In the UK, birth control is free for all, including visitors. And if you do get pregnant, all your needs will get taken care of by the NHS and you will be assigned a midwife, who will visit you in your home after the baby is born for the first 6 months of its life to prevent the baby from picking up germs at the GP office.

Suffice it to say, I love the NHS.

Now, here's what my friend Jean writes, in response:

Thanks, Rebecca, for setting the record straight. I think most Americans have an irrational fear of socialized medicine based on hearsay and propaganda by our pharma/medical industrial complex. The truth is socialized medicine provides better care at lower cost. When people say we have the best health care system in the world they are really talking about the most advanced procedures that the vast majority of people in this country don't have access to or can't afford. There is absolutely no excuse for a woman with a blood clot to be forcibly removed from the ER because they will not do the medical test that would confirm her suspicion that she was seriously ill. That would never happen in a state with socialized medicine. I also believe we need to have a serious conversation about how we unnaturally prolong death long past the time tests have shown that treatment is futile. It is crazy how those who want to get medical care can't and those who have money can do whatever they want regardless of the cost/benefit. Now I'll be accused of promoting "death panels." I've told my children I don't want their inheritance wasted on prolonging my death if I have a terminal disease. I've held hands too many times with those who have gone down that road and it is not for me!

In all the frenzied political debate about so-called "socialized medicine," there are many falsehoods promulgated about the alleged poor quality of care in all the other advanced democracies - like the U.K., Canada, France, Germany and Japan - that offer government-funded universal healthcare to their citizens. Most are based on either unsubstantiated rumors or outright lies. Yet, only our system creates the abysmal constellation of unfavorable conditions that can lead a Franciscan hospital to turn away a poor woman of the very sort Francis of Assisi devoted his life to caring for, allowing her to die on the cold, concrete floor of a jail cell.

Monday, August 27, 2012

August 27, 2012 – The Downside of Up Life-Expectancy

Here’s a jaw-dropping statistic: “Since 1900, the life expectancy of Americans has jumped to just shy of 80 from 47 years.”

Among so many significant developments of the 20th Century, this may be one of the most far-reaching: and it gets so little press, compared to advances in transportation, communications, electrical power, data-processing and all the rest.

Walk through any older graveyard, and take note of the lifespans cut into the 19th century headstones. Stroll over into the newer section, and do the same for the stones from the last decade or so.  Then, do the math.

You’ll experience your own little “Wow!” moment.

We’ve been making huge progress, as a society, fighting cancer – which partly explains the increase in life expectancy, of course. Yet, those numbers also do their part to blunt the remarkable gains in cancer prevention and treatment.  They make them seem less impressive than they really are.

Here’s why. 

We all know cancer is an old person’s disease.  Not every cancer, of course. Small numbers of the young can be afflicted as well, and it’s especially heartbreaking when that happens.  Yet, the chances of getting most cancers go up with each decade of life: way up, once you pass 60 or so.

In 1900, when people were dying at the age of 47, on the average, most of them were succumbing to other maladies before they even made it into the prime cancer years. So many cancers are influenced by genetics: at a certain age, some mysterious, pre-programmed switch in the DNA gets thrown into the “on” position. Then, some of our cells start morphing into predators and lunching on those around them.

Sometimes, I hear people of my generation comment with alarm on how many of their friends are getting moles cut off, or undergoing mastectomies, or following the same chemotherapy path I and a few others of us have unintentionally pioneered. The cancer rate must surely be going up, they exclaim!

It’s not – at least, not if the effects of aging are controlled for.  What’s going up is their age, and the age of their contemporaries.  That, in itself, accounts for a whole lot of cancers.

Want to know what the leading cause of cancer really is?  It’s getting old.

What a paradox! With each new advance in cancer treatment, average life expectancy goes up.  Yet, for all those cancers that are prevented or successfully treated, the chances of getting other cancers increase, due to the demographics.

You’ve really got to feel for the cancer researchers.  They work so hard, and they announce their latest successes in triumph, but their numbers don’t look nearly so good as they would, were the average lifespan not also increasing.  They’re walking up the down escalator.

In the August 25th New York Times, David Ewing Duncan poses the very reasonable, but creepy, question of whether some of these medical advances are really worth it. He says he’s in the habit of polling his lecture audiences, asking for a show of hands as to how long they truly want to live. “I provided,” he says, “four possible answers: 80 years, currently the average life span in the West; 120 years, close to the maximum anyone has lived; 150 years, which would require a biotech breakthrough; and forever, which rejects the idea that life span has to have any limit at all.”

Before voting, he tells his audiences, they should assume that aging, as we know it, would continue. His question is simply about longevity that could be gained through eliminating life-threatening illnesses, not a matter of freezing the normal aging process. He’s not offering the opportunity, in his thought-experiment, for people to remain forever 30, or 40, or whatever ideal degree of physical maturity they’d care to name.

The majority — 60% — say they don’t want to live past 80. Another 30% declare they’re willing to power on through all the usual infirmities of aging, finally dying at 120. Nearly another 10% want to boldly go where no one has gone before, and live to 150. Only a tiny fraction put up their hands to say they want to live longer than that.

Duncan goes on to report that medical researchers are on the verge of a number of breakthroughs that could push the average life expectancy up even higher. Among these are medications to reduce inflammation of the coronary arteries, as well as various stem-cell therapies. The growing field of bionics — developing replacement hardware for the body, like cardiac pacemakers, brain implants for Parkinson’s sufferers, even artificial hearts — offers to add even more years to the average age at death.

“Curiously,” Duncan goes on, “after learning about these possibilities, few people wanted to change their votes. Even if I asked them to imagine that a pill had been invented to slow aging down by one-half, allowing a person who is, say, 60 years old to have the body of a 30-year-old, only about 10 percent of audiences switched to favoring a life span of 150 years.”

For many of those who don’t want to change their vote, it’s the various infirmities of aging that scare them off.  For others, it’s concern for younger generations, who would find the staircases to so many joys and achievements blocked by their elders, shuffling around on the landings above them. For still others, it’s about worry for the environment — whether the earth can truly sustain very many more people than are already here.

The tiny minority who do want to live longer speculate that we have no way of knowing what such super-centenarians could accomplish, with their added wisdom and life-experience. What new gizmo could a genius like Steve Jobs come out with, if he lived to 150?

We do know, Duncan concludes, that Albert Einstein was very clear about his own wishes, near the end of his life: “As he lay dying of an abdominal aortic aneurysm in 1955, he refused surgery, saying: ‘It is tasteless to prolong life artificially. I have done my share, it is time to go. I will do it elegantly.’”

Let’s hear it for everyone being given the opportunity to live long enough to still die elegantly!

Friday, August 24, 2012

August 24, 2012 – What Would Jesus Not Do?

One of the most brilliant things I’ve seen lately, related to the healthcare-funding debate, is this little satirical item that Rabbi Michael Lerner sent around in his latest Tikkun e-newsleter. (Same last name, but he’s no relation to my oncologist, as far as I know.)

The author is Fr. James Martin, S.J., and it was published today in the In All Things group blog on the website of America, the Roman Catholic weekly.

This item’s not even a day old, at least in its present iteration (I don’t know when Fr. Martin wrote it).  Yet, it’s already got quite an ecumenical life, it seems.  Written by a Jesuit, passed along by a Reform rabbi, and now picked up and republished by a Presbyterian.

Here it is, a very unauthorized translation of Luke 5:17-26.  Let those who have ears to hear, listen:

The Lazy Paralytic

1. When Jesus returned to Capernaum after some days, it was reported that he was at his home. 2. So many gathered around that there was no longer room for them, not even in front of the door; and he was speaking the word to them. 3. Then some people came, bringing to him a paralyzed man, carried by four of them.  4. And when they could not bring him to Jesus because of the crowd, they removed the roof above him; and after having dug through it, they let down the mat on which the paralytic lay. 5. When Jesus saw this he grew angry, "Why did you wreck my roof?  Do you have any idea how much that cost to install?  Do you know how many tables and chairs I had to make in my carpentry shop to pay for that roof?  The reeds alone cost five talents.  I had them carted in from Bethany."  6. The disciples had never seen Jesus so angry about his possessions.  He continued, "This house is my life.  And the roof is the best part."  The disciples fell silent.   7. "It's bad enough that you trash my private property, now you want me to heal you?" said Jesus, "And did you not see the stone walls around this house?"  "Yes," said the man's friends.  "Are these not the stone walls common to the towns and villages of Galilee?"  8. "No," Jesus answered.  "This is a gated community.  How did you get in?"  The man's friends grew silent.  9. Then Jesus turned and said to the paralytic, "Besides, can't you take care of your own health problems?  I'm sure that your family can care for you, or maybe the synagogue can help out."  10. "No, Lord," answered the man's friends.  "There is no one.  His injuries are too severe.  To whom else can we go?"  11. "Well, not me," said Jesus.  "What would happen if I provided access to free health care for everyone?  That would mean that people would not only get lazy and entitled, but they would take advantage of the system.  12. Besides, look at me: I'm healthy. And you know why?  Because I worked hard for my money, and took care of myself."  The paralyzed man then grew sad and he addressed Jesus.  "But I did work, Lord," said the paralytic.  "Until an accident rendered me paralyzed."  "Yes," said the man's friends. "He worked very hard."  13. "Well," said Jesus, "That's just part of life, isn't it?"  "Then what am I to do, Lord?" said the paralytic.  "I don't know.  Why don't you sell your mat?"  14. All in the crowd then grew sad.  "Actually, you know what you can do?" said Jesus. "You can reimburse me for my roof.  Or I'll sue you." And all were amazed.  15. "We have never seen anything like this," said the crowd.

Thursday, August 23, 2012

August 23, 2012 – You Takes Your Chances

Here’s an article that gives me pause. In the August 20 “Well” medical blog in the New York Times, Jane E. Brody comments on the possible overuse of medical diagnostic scans that could contribute to secondary cancers: perhaps as many as 1.5% of all the cancers that occur in the United States.

And why is this of such concern to me?  To anyone who knows my medical history, it should be obvious.  Ever since my non-Hodgkin lymphoma diagnosis in late 2005, I’ve received somewhere between two and five radiation-based scans a year: some of them CT scans, others CT scans combined with a PET scan. I had the greatest number of these during and just after my chemotherapy. In recent years, the number of scans has decreased: first, to about three a year, and now, two.  With my indolent lymphoma continuing to snooze away, I seem, now, to have settled into a pattern of two alternating scans a year: one CT, the other PET/CT.

These are not quite full-body scans, but are pretty close to it: neck, chest, abdomen and pelvis.  Everything but the arms, leg and head, in other words.

I’ve had so many scans, I’ve lost count. Really. I probably should have kept a central log of all my scans, but I haven’t – although I suppose that information could easily be mined from my thick file at Dr. Lerner’s office.

Now, here’s the kicker. Just over a year ago, I had surgery to remove my cancerous thyroid gland.  Was the thyroid cancer merely a matter of bad luck – a disorder I was destined to develop anyway, independent of the lymphoma? Or was it caused by something related to my previous cancer treatment - like radiation from all those diagnostic tests?

A CT scan delivers a relatively modest, measurable amount of radiation.  In and of itself, one scan doesn’t amount to much. The question no one really knows the answer to is whether or not there’s a cumulative effect.

A PET scan is a whole other matter. With respect to radiation, PET scans are to CT scans as a double vodka is to a thimbleful of beer. They involve getting injected with a radioactive-glucose solution that courses throughout the body, carried by the blood.

Ever since getting diagnosed with thyroid cancer, I’ve wondered about the secondary-cancer thing - but reading this article brings that worry home once again. I know that, after a nuclear disaster like Chernobyl or Fukushima, the first thing people in the affected geographic region are supposed to do is swallow potassium iodide pills to protect their thyroids. The thyroid, it seems, is the organ in the body most susceptible to radiation.

It's like the canary in the coal mine.  Or, the uranium mine.

This next bit of information is, of course, anecdotal, but it gives me something more to think about.  Last fall, when I went for my post-thyroidectomy radioactive-iodine treatment, I shared the treatment room that afternoon with a young Hodgkin lymphoma survivor who had undergone her chemotherapy at exactly the same time I’d had mine.  She had Hodgkins and I non-Hodgkins, so our chemo regimens were naturally different, but presumably, in the years that followed, she received roughly the same series of diagnostic scans as I did – to make sure her cancer was gone, and stayed gone.

Two blood-cancer patients. Both treated for their cancer at the same time. Both develop thyroid cancer and have thyroidectomies at about the same time. Coincidence?

Maybe.  Like I said, the “evidence,” such as it is, is purely anecdotal.  Two cases do not a medical trend make.

But, still... it does make you think.

Of course, the radioactive-iodine treatments she and I both received – swallowing those hot pills, in order to fry any leftover thyroid tissue still floating around in our bodies – was a way-bigger jolt than anything delivered by a diagnostic scan.  She and I ingested so much radioactive material, we had to keep our distance from our loved ones for several days afterwards.  Granted, thyroid cancer was no longer an issue for either of us - we no longer had thyroid glands. But, what about our other organs?

Don’t get me wrong.  I dutifully submitted to all those diagnostic scans and will continue to do so, because it’s important to keep a vigilant eye on my lymph nodes. Six years ago, I let my medical bartenders drip six highly-toxic chemo cocktails into my veins, knowing that at least one of the ingredients in those concotions, adriamycin - the one they call “the red death” - burns the skin on contact and is strongly suspected to cause secondary cancers in a small, but measurable percentage of patients.

If my lymphoma ever yawns, throws off the bedclothes and gets up to stumble around like Frankenstein's monster, one of the treatment options I'll want at the top of my list is radioimmunotherapy (Bexxar or Zevalin), which involves an injection of Rituxan bonded to radioactive material.

It’s all about the odds. We cancer patients say “bottoms up” to the chemo bartender.  We shoot up with radioactive glucose like some oncological junkie.  We smile and say “cheese” to the PET-scan photographer.  And all because we know our odds are better with those interventions than without them. The oncological Russian-roulette revolver may hold considerably more than the traditional six rounds, but even if its rotating cylinder’s chambers are numbered in the hundreds, one of them does still hold a bullet.

We pays our money (or, our insurance companies do).  And, we takes our chances.

It has ever been so, in Cancerworld.

Tuesday, August 21, 2012

August 21, 2012 – Our Hidden 30% Tax

Here are a couple of figures related to our dysfunctional healthcare system that made me sit up and take notice, when I saw them recently. Both are mentioned in the short video below (sorry for the annoying commercial that precedes it, but that’s what you get with CNN).

The first statistic is that 137,000 Americans died over a 7-year period due to lack of insurance.

I've known some of those people. I’ve heard their firsthand stories in the course of my ministry: people who delayed getting medical treatment because they were uninsured, only to find out that – once they either got insurance, or pain finally drove them into the emergency room – it was too late, and the doctors could do little for them. These are heartbreaking stories, especially when you’re looking into the faces of the people telling them, as I have done.

Lack of insurance can literally be a matter of life and death.

Actually, I think that 137,000 figure is probably low.  Lots of people are filled with shame about their uninsured status, and hesitate to speak of it, even to a pollster promising anonymity. Some of these premature deaths-by-insurance (or lack of it) no one will ever know about.

Second is the statistic that we have a de facto 30% tax on every healthcare dollar spent in the U.S.

“What kind of a crazy tax is that?” you may ask. “Healthcare is expensive enough.  That’s one tax we’ve got to dump right away!”

It’s not so simple as that.  This is not the sort of tax you can complain to your Senators and Representative about, asking for a repeal.  It’s the largely unnecessary administrative costs related to health-insurance coverage and billing.

We’ve got a massive industry in this country that siphons money out of the healthcare system for private gain. These are very large, publicly-traded companies, whose executives earn multi-million dollar bonuses and that make huge campaign contributions to politicians and Super PACs. Not all of that 30% is shareholder profit, to be sure.  Most of it is the “overhead” cost of a bloated industry that exists for one purpose only: to allow those profits to be earned.

Countries with single-payer healthcare systems – that’s virtually every other developed country in the world, except for ours, as you’ll see from the World Health Organization statistics in the chart below  – avoid most of this 30% “tax,” simply by eliminating medical billing altogether and picking up the tab for all medical care. We're not exactly getting good value for our money, according to several significant benchmarks:
Of course, as the video makes clear, real taxes would have to be increased to pay for the somewhat lower actual cost – as opposed to the insurance-inflated cost – of medical services delivered to everyone. But at least these new taxes would pay for something real and useful, and not simply subsidize an industry that doesn’t actually produce anything.

The current presidential-election debate is cast in terms of “Obamacare” vs. free-market care. What’s seldom mentioned is that Obamacare is a watered-down compromise (based, ironically, on the system Governor Romney established in Massachusetts, although he furiously denies it).  Obamacare still includes the wasteful 30% “tax,” because it continues to protect and coddle private insurers.

Obamacare is a weak political compromise, the only thing the President and his supporters could sell to the few members of the obstructionist opposition party willing to reach across the aisle. Although Obamacare shakes up the inner machinery of the present medical-insurance system a good bit, it doesn’t tinker with the feature that allows all those for-profit companies to tap into the flow of dollars and siphon off one out of every three, for their operating expenses and profits.  A true single-payer system – one that would begin with the relatively simple reform of extending Medicare to everyone – isn’t even on the table in this election campaign.

“But we must have competition!” cry the free-marketeers. “Only competition can keep costs down!”

Oh, really?  Enough to offset the cost of the one-out-of-every-three healthcare dollars presently circling the drain?

Those are the costs we need to eliminate.

“But that’s socialism!” cry the wild-eyed Tea Partiers.

OK, by some definitions of the word - but not most - it is.  But no more than Medicare is socialism. Or Social Security. Or taxpayer-funded police and fire departments, or just about any other government service you’d care to name. I don’t think anyone but the lunatic fringe has the slightest fear that government-funded services such as these shove us onto some imagined slippery slope that ends up with jackbooted soldiers parading before the Capitol and brainwashed schoolchildren singing Marxist labor anthems. That hasn't happened in Britain, or France, or Australia - or Canada, for crying out loud! So, why should taxpayer-funded medical care be any different here?

Every other developed nation in the world looks on, dumbfounded, unable to figure out why the United States of America allows such blatant waste to continue – and why we allow so many of our citizens to die unnecessarily.

Friday, July 27, 2012

July 27, 2012 – A Lighthearted Case for Electronic Medical Records

The last time I visited Dr. Lerner, my oncologist, he consulted my thick file, as usual.  Yet, as I answered his questions, I noticed he was doing something a little different: he was entering notes directly into a computer terminal. When I asked him about it, he confirmed what I suspected to be true: that his office is in the process of transitioning to an automated record-keeping system.

He didn’t sound 100% happy about it, but let it be known this is something “they” are insisting on.  Who “they” are wasn’t entirely clear: maybe our local hospitals, the insurance companies, the pharmaceutical companies, the State – or perhaps all of the above. He did grudgingly admit it will result in more accurate transmission of information – even though it means a big adjustment for him, his colleagues and their office staff. I imagine the transition period is especially trying.

Now, I don’t know how much of the information entered into the new system is narrative, and how much numeric.  Whatever the ratio, it should help solve one of the traditional problems with doctors’ record-keeping: poor handwriting.

I have no way of knowing whether the new procedures will cut down on the sort of mangling of the English language evident in the following examples, culled from actual medical charts. This item’s been circulating on the Internet for some time, but I still find it amusing. Hope it makes you smile, too:

1.  She has no rigors or shaking chills, but her husband states she was very hot in bed last night.

2.  Patient has chest pain if she lies on her left side for over a year.

3.  On the second day the knee was better, and on the third day it disappeared.

4.  The patient is tearful and crying constantly.  She also appears to be depressed.

5.  The patient has been depressed since she began seeing me in 1993.

6.  Discharge status: Alive but without my permission.

7.  Healthy appearing decrepit 69 year old male, mentally alert but forgetful.

8.  The patient refused autopsy.

9.  The patient has no previous history of suicides.

10. Patient has left white blood cells at another hospital.

11. Patient's medical history has been remarkably insignificant with only a 40 pound weight gain in the past three days.

12.  Patient had waffles for breakfast and anorexia for lunch.

13.  She is numb from her toes down.

14.  While in ER, she was examined, X-rated and sent home.

15.  The skin was moist and dry.

16.  Occasional, constant infrequent headaches.

17.  Patient was alert and unresponsive.

18.  Rectal examination revealed a normal size thyroid.

19.  She stated that she had been constipated for most of her life, until she got a divorce.

20.  I saw your patient today, who is still under our car for physical therapy.

21.  Both breasts are equal and reactive to light and accommodation.

22.  Examination of genitalia reveals that he is circus sized.

23.  The lab test indicated abnormal lover function.

24.  The patient was to have a bowel resection. However, he took a job as a stock broker instead.

25.  Skin: somewhat pale but present.

26.  The pelvic exam will be done later on the floor.

27.  Patient was seen in consultation by Dr. Blank, who felt we should sit on the abdomen and I agree.

28.  Large brown stool ambulating in the hall.

29.  Patient has two teenage children, but no other abnormalities.

Saturday, July 21, 2012

July 21, 2012 – The Wrong Question to Ask

In a recent article in the Coping with Cancer magazine, 10-year breast cancer survivor Lori Taft Sours writes:

“A cancer diagnosis inevitably raises the question, ‘How long will I live?’ I don’t ask myself that question anymore. Now the question is, ‘How can I live well?’ I strive every day to feel good, laugh, and maybe cry, to connect to others, and to make a difference. I learned this from others who have been on the cancer journey. Cancer is an illness that binds us together, and we can all help each other to live well by sharing our stories.”

I like Lori’s outlook, and certainly resonate with the things she says about stages she’s passed through on her long-term journey of survivorship. At the beginning, in those dreadful days right after diagnosis, fears of suffering and dying loom large. But then, as treatment possibilities present themselves and we settle first into the short-term routines of chemotherapy, and later into a longer view, we survivors come to see that life with cancer is very much worth living. If we’re fortunate, we may even come to discover how hard-earned lessons we’ve learned along the way can be of value to others.  We learn, as the patriarch Abraham learned of old, that in the midst of it all we are, in some unaccountable way, “blessed to be a blessing” (Genesis 12:2).

One of the most important early learnings for Lori had to do with reclaiming a sense of control over her own life, that she had feared for a time the disease had stolen from her: “The attitude that I was an active participant in my own healthcare gave me a sense of control, which is one of the first things to disappear with the word ‘cancer.’”

To anyone just beginning the cancer journey, I’d want to say something like this:

Right now, your life is understandably in turmoil and fears loom large, but be prepared for this disease to teach you patience, as you discover you’ve embarked on a journey of survivorship that will last the rest of your life. The urgency of this present crisis will dissipate, and you’ll learn new disciplines and rhythms of living. In time, baring your arm for a blood test or stretching yourself out, arms over your head, for a CT-scan will become familiar motions lodged in your body-memory. You’ll find joy in unexpected places: not only, as the culture believes, in days of robust health, but smilingly emerging from the mists of malaise. Surprising companions will greet you along the way, offering you priceless gifts that can never be hoarded, but only grow richer in the sharing. If you are so blessed as to enter remission, you’ll uncover a new meaning of that word: how the greater Power that guides your life has “re-missioned” you, placing you again and again in situations where sharing your story is the greatest gift you can offer another person. Most of all, you’ll learn that life, even a life with cancer, is to be lived – not only wisely and with foresight, but also boldly, with spontaneous generosity and an appetite for divine revelation.

From the Christian perspective, I continue to find the well-known words of the poet W.H. Auden, from his 1944 “Christmas Oratorio” in For the Time Being, to be an inspiration:

He is the Way.
Follow him into the Land of Unlikeness.
You will meet strange beasts, and have unique adventures.

He is the Truth.
Seek him in the Kingdom of Anxiety.
You will come to a great City, that has expected your return for years.

He is the Life.
Love him in the World of the Flesh,
And at your marriage all its occasions will dance for joy.

Thursday, July 12, 2012

July 12, 2012 - More of Us All the Time

There are more of us cancer survivors all the time.

According to a June 14, 2012 Reuters news story (“Number of US cancer survivors to increase by a third by 2022"):

“The number of Americans living with cancer will increase by nearly a third to almost 18 million by 2022, according to a report released on Thursday by the American Cancer Society and the National Cancer Institute.

Researchers found that even though the incidence rates of cancer are decreasing, the number of cancer survivors is on the rise due to a growing - and aging - U.S. population. The incidence of cancer rises dramatically with age.

The report concluded that the expanding population of cancer survivors makes it increasingly important that the medical community understand their unique healthcare needs.”

While these statistics may sound at first like bad news, they’re actually not.  Two very positive factors influence these numbers.

First, those of us who do have cancer are surviving longer, thanks to ever-more-effective treatments.  The interval between diagnosis and death is growing greater all the time.  For some of us, even though we’ve been diagnosed with cancer, we’re not dying from it, but from other causes.

Second, people are living longer in general.  Because the chances of contracting cancer go up with each year of our lives, that means there are people being diagnosed with cancer today who, in earlier generations, would never have reached that point, because they would have been carried off by some other ailment that’s more likely to be curable today.

Many cancers are a sort of genetic time bomb.  Certain genes are programmed to go haywire when a person hits a certain age.  If more of us are living to that age (whatever it may be) than in earlier generations, that translates into more cancers.

The emphasis in all these statistics is on the word “living.”  More and more of us are living with cancer, not dying from it.

That means survivor issues are going to loom larger in importance for the medical community.  The combination of more-survivable cancers and longer lifespans in general means a great many of us are journeying through uncharted territory.  Never before have there been so many of us asking what it means to be a cancer survivor.  Never before have there been more of us living with cancer.

We’re living. We’re surviving. We’re people with cancer. Hear us roar!

Wednesday, July 11, 2012

July 11, 2012 – Would You Want to Know?

An article in the July 9 New York Times (Gina Kolata, “A Life-Death Predictor Adds to a Cancer’s Strain”) lays out a grim but philosophically-fascinating scenario.

Imagine you have advanced cancer of the eye. If the tumor has grown large, you’ll very likely lose the eye, which is bad enough – but that’s not all.  A new option for genetic testing of your tumor reveals, with a very high degree of accuracy, which of two subtypes of ocular melanoma you have. Half of all patients have the first type, and are likely to recover completely. Those unfortunate ones who fall into the other half face a 70-80% likelihood they’ll be dead in five years, from metastases to the liver.  This second type of eye cancer is incurable.

According to the Times article, there’s some debate in the medical community over whether doctors ought to offer this testing option at all.  Most patients, it seems, have said they would rather not know if they have an incurable disease. And for those who do, learning of the incurable nature of their disorder – so soon after the initial diagnosis – could very well send them into an emotional tailspin from which they may never recover.

“Why would you want that information when we don’t have anything we can do for you?” one oncologist asked. “That is the fundamental question that has caused people to pause.”

It’s not that the test is medically useless. Some doctors point out that, if they can discover the cancer as soon as it jumps to the liver, they may be able to control its spread for a while. Even after it moves on to the lungs or bones, there are further treatments that can slow its inevitable progress, buying even more time and sparing the patient some pain that would come with a faster-moving cancer.

“Would you want a horrible death that is relatively short,” one doctor asks, “or a death that is slower?”

Of course, those who agree to the test and find out they have the curable variety are much relieved, and rejoice at the good news.

I think I'd want to know.  I’d want to have as much time as possible to scratch a few more items off my bucket list.

So, what do you think?  Would you want to know?

Tuesday, July 10, 2012

July 10, 2012 -

There are a great number of helpful websites offering support for those dealing with cancer and their families, but one of the most helpful I've seen is a new site, My Cancer Circle. Cancer patients and/or their caregivers can arrange for a complimentary web page, which gives them a central place from which to disseminate news, coordinate support (such as meals delivery) from family members and friends, etc. It's got calendars, blogging tools and other features to provide a central place for getting the word out and coordinating the efforts of various folks who are trying to help.

It looks to me like the marriage of a project-planning team's intranet site and a cancer blog.  Great concept.

If you set up a circle, it's private. Members have to be invited in order to get a login and password.

I've seen other sites that attempt to do something like this, but this one looks like the most full-featured I've seen so far.

Check it out!

Wednesday, July 04, 2012

July 4, 2012 – Preaching from a Wheelchair

I’m spending the Fourth of July in Pittsburgh, at the Presbyterian Church (U.S.A.)’s 220th  General Assembly, which is meeting all week. Presiding over the General Assembly is an elected Moderator, an officeholder who’s sometimes an ordained minister (a position we sometimes call “teaching elder”) or a lay leader (a “ruling elder”).  For the past couple of years, Cynthia Bolbach, a ruling elder from Washington, D.C., has been our Moderator.  On Saturday, as planned, she passed the Moderator’s cross and stole to the Rev. Neal Presa, whom this Assembly had just elected as her successor.

Cindy has served the church during a difficult time.  At the 2010 General Assembly, the church opened the door just a crack, removing a constitutional provision that barred those in committed same-sex relationships from ordination as deacons, ruling elders or teaching elders. Now it’s up to the ordaining bodies – presbyteries in the case of ministers, or local-church sessions, in the case of ministers – to decide who’s suitable to serve.

Because it’s the Moderator’s job when the Assembly’s not in session – which is most of the time – to travel around the country, even the world, promoting and interpreting what the church is doing, Cindy’s had to deal with more than the usual number of angry Presbyterians who just don’t understand why the national church would allow such a thing.

By all accounts, she’s done a marvelous job. As with no other issue, the question of the ordination of gays and lesbians  brings out the worst in some people. Again and again, Cindy has walked into confrontational situations and faced anger, in some cases even outright meanness, with patience and grace.

She’s not walking much any longer. During her moderatorial tenure, Cindy was diagnosed with cancer.  She’s not shared the particular type of cancer she has, nor her prognosis – preferrring to keep that information private – but she did let it be known that her swan song here in Pittsburgh is taking place during a round of chemotherapy treatments.

Cindy preached, and presided over the opening session of the Assembly, from a wheelchair. This is something she chose to do.  She had a very able Vice-Moderator, the Rev. Landon Whitsitt, who could certainly have carried on in her absence, but it was obviously important to her to finish the job herself.  On both days when she was in front of the Assembly, Cindy seemed low on energy, but she fulfilled her role with grace and good humor.

Cindy simply did what people with cancer most want to do.  She kept on living.

I don’t think she’ll be much in evidence during the rest of the Assembly.  Having passed the mantle to her successor, she may have gone back home to continue her treatments, for all I know. Or, she may be simply taking it easy, conserving her energy for the things she most wants to do.

Whatever the case, whether here in Pittsburgh or back home in Washington, Cindy is surrounded by the prayers of a grateful church.  We admire her strength, perseverance and faith.

Sunday, July 01, 2012

July 1, 2012 - A Tale from the Insurance Wars

Just thought I'd pass along this little item someone sent me on Facebook, which speaks for itself:

"This is my duaghter JoJo. United Health Care dropped her from my group plan in 2009 and gave us no reason. That same year the CEO of UHC-Group made $770,000,000. It would take the average family physician 4,400 years to make the same amount.

Part 1 of "Obama Care" in 2010 saved my daughter's life. It made it illegal for insurance companies to drop people for no reason. She got the brain surgery she needed. United Health Care was ultimately fined $10,000,000....

Yes we can..."

I don't know anything about that CEO who accepted such obscenely large compensation, nor how he sleeps at night. If you met him on a golf course, he'd probably be a likable person. Somehow he must manage to compartmentalize this stuff in his mind, so he doesn't have to face the twisted, self-serving ethics that are deeply embedded in his company's corporate culture.

It's not just an isolated case of corporate wrongdoing. The UHC-Group compensation case may have been the most egregious example of runaway executive compensation in the healthcare industry, but there are plenty more stories like it.  It's a systemic issue. And it's the system that needs to be fixed.

As the people of our nation rally the political will to do that, personal stories like this one help.

Monday, June 25, 2012

June 25, 2012 – Tweaking the Cocktail

If ever there were a good time to be a lymphoma patient (not that I think there ever is), it’s now.  Every annual meeting of ASCO (the American Society of Clinical Oncologists) seems to offer news of some new variation on treatment protocols that promises a heightened survival rate.

The latest one for follicular lymphoma – as I learn today from an e-mail bulletin sent around by the Leukemia and Lymphoma Society – is a new combination of Rituxan (the monoclonal antibody drug I received along with my CHOP chemotherapy) and an old drug that’s been around for a while, Revlimid:

John Leonard, M.D., of Weill Medical College of Cornell University presented promising results for a Phase III trial of a new Rituxan combination to treat patients with follicular lymphoma (FL). Dr. Leonard reported that using Revlimid plus Rituxan very much increased overall response rates for relapsed FL patients (73% in this trial vs. 50% for Rituxan only in previous trials). A Phase II trial of this combination for newly diagnosed FL patients is already underway.”

Revlimid, its manufacturers admit on their website, is an “analogue” of Thalidomide – one of the scariest names out there in the field of pharmacology. OK, let’s be real: Revlimid is Thalidomide, but with the drug’s notorious history I can understand why they’d rename it.  I still remember, as a kid, paging through an issue of LIFE magazine with its chilling, black-and-white photos of the children born with horrible birth defects as a result of that drug.  From 1957 to 1961, Thalidomide was commonly given to expectant mothers to prevent morning sickness.  No one knew that many of the children born to these unfortunate mothers would have no arms – other than small, vestigial appendages that could in no way substitute for the real thing. Very sad.  (Not to mention, a gold mine for the trial lawyers.)

As a cancer drug, Revlimid is evidently effective: and, as long as the patient isn’t an expectant mother, it’s supposed to be safe (or, at least, as safe as most other cancer drugs, all of which have a certain risk to them).  Lots of chemo drugs come with a warning label saying they’re not for expectant mothers, or may cause sterility.  Doctors have raised that sort of warning with me, at various times as I prepared for treatment, but when I tell them Claire and I are not only done having children, but that I’ve had a vasectomy, it lays those concerns to rest pretty quickly.

It’s not cheap, though: reports that Revlimid (medical name, Lenalidomide) costs an average of $163,381 per year.  Ouch.

Dr. Leonard’s work is only a Phase I trial, with Phase II now underway, so this drug cocktail is a long way from being ready for prime time.  I’m glad to know someone’s out there, though, with the medical-research equivalent of a cocktail shaker, trying out new drug combinations.  From early indications, chances are that this one may be in production in several years’ time, so it's one more reason to be hopeful, should the day come when I need treatment again.

Saturday, June 23, 2012

June 20, 2012 – Looking for Burglars in an Empty House

Today I drive to Memorial Sloan-Kettering’s satellite facility in Basking Ridge for a follow-up visit with Dr. Boyle, my thyroid surgeon.

The worst part of the trip, it turns out, is the drive up there.  I-287, a ring-road around New York City, is one of the most congested highways in the country.  Today, it’s a parking lot.  Given the time of day, there has to have been an accident or breakdown or something, but I don’t stick around to find out. Already running late, I bail out at the nearest exit (once I creep up to it), and use my GPS to chart out an alternate route on back roads.

I’m an hour late when I get to the place, but they manage to adapt.  First is a thyroid ultrasound – one of the easiest medical tests ever, from the patient’s standpoint.  Lie down on your back on a gurney, in a darkened room, while the technician squirts pre-warmed goo on your neck (that’s a technical medical term, I believe) then slides a sensing device all over your neck for five minutes or so.

It occurs to me, as I’m lying there looking up at the ceiling, that this follow-up test is something like looking for burglars in an empty house.  I no longer have a thyroid gland, and Dr. Boyle was confident, following the surgery, that he’d removed the entire thing, leaving no thyroid tissue behind.  I had the radioactive iodine treatment last fall, just in case.  Today’s visit is likewise one of those “just in case” situations.

The visit with the doctor himself is brief and uneventful. After ascertaining that I’m having no difficulties, and that I’m continuing to see his colleague Dr. Fish, the endocrinologist, to make sure I’m taking the most appropriate daily dose of Synthroid (the replacement thyroid hormone), he tells me I’m doing fine and that he’d like to see me in a year.

That’s encouraging.  I wonder about the necessity of today’s test and consultation, but I suppose it fits into some kind of standard follow-up protocol.

I didn’t think we’d turn up any burglars.  What would they be looking to steal, anyway, after the scorched-earth policy of my thyroidectomy?

Tuesday, June 12, 2012

June 12, 2012 – Huh?

Every once in a while you run across a news story, and the only possible reaction to it is.... “Huh?”

That’s how I responded when I read a news article just out, that claims there’s conclusive evidence that overweight men have a better chance of surviving diffuse large B-cell lymphoma than those of more normal weight.

Like I said: Huh?

That news runs counter to every bit of medical advice I’ve been hearing for most of my life.

The article is of particular interest to me because (1) I’m a man, (2) I’m considerably overweight, and was so at the time of my lymphoma diagnosis, and (3) I have something very similar to diffuse large B-cell lymphoma.

OK, my grading was actually “B-cell, diffuse mixed large and small cell.”  That means I had some less-dangerous small cells – the kind present in indolent, “follicular” lymphoma – mixed in with the large ones.  It was the presence of the aggressive larger cells, as discovered by the second-opinion pathologists at Memorial Sloan-Kettering as they reviewed my biopsy slides, that put me on the chemotherapy bandwagon straightaway (do not pass GO, do not collect $200).  Otherwise, watchful waiting would have been a viable option.

The only time in my life when I’ve been of statistically normal weight was a period of time in my very late teens and early-to-mid-20s.  Both before and after that time, I’ve struggled constantly with my weight.  My failure to turn around my tendency towards obesity has been one of the greatest sources of guilt and shame in my life.

Ever since cancer has come onto the scene, it’s been even worse.  It’s hard to marshal the emotional energy to change my eating patterns when I’ve been through the sort of struggle I have.  There’s a part of me that says to the rest of me: “Why should you suffer through a diet when you’ve already suffered through so much else?  Live a little!”

Then this article comes along, suggesting that the spare tire I’ve been carrying could very possibly have been my life-preserver.  Go figure.

The article’s appropriately cautious about the study’s results.  The researchers don’t want anyone to go out and start lobbying for hot-fudge sundaes to be included in the treatment protocols.  Quite sensibly, it makes the point that obesity is a proven risk factor for all manner of very bad things that could happen to a person, medically, and that there’s every reason to lose those extra pounds.

But still, it makes you think.

And this one I’ll be thinking about for a very long time.