September 25, 2009 - A Survivor's Testimony: Never Give Up

Here’s a video containing the testimony of Dr. Samuel Gruber, a longtime lymphoma survivor:

The Survivors Club - Doc Gruber - Lymphoma Survivor

There’s a lesson for us here about the importance of being our own advocate: of keeping up with the medical literature (as best we can, anyway), and talking with our doctors about the things we read.

There’s also a comforting truth in what Dr. Gruber says about the rapid pace of research in lymphoma treatments. The longer we hang on, the more new treatments will become available.

Reason for hope!

September 18, 2009 - Worse than Drunk Driving and Homicide Combined

It's worse than drunk driving.

It's worse than homicide.

It's worse than drunk driving and homicide combined.

What is it that causes more Americans to die each year than either of these two fearful scourges?

Lack of medical insurance.

So says a new study released by Harvard Medical School. If these numbers are correct - and with a Harvard cachet, most would conclude they probably are - our country's healthcare crisis is worse than nearly all of us imagined.

It's a stark number: 45,000 deaths a year. That's how many American deaths the Harvard experts attribute to lack of medical insurance. One death every 12 minutes.

About a year ago, one of our daughter's high-school classmates was struck and nearly killed by a pickup truck, while crossing the street in a designated crosswalk. She survived, but with brain damage, blindness in one eye and mobility issues that could result in lifelong disability (we continue to be hopeful for recovery). A friend who was walking beside her was knocked off balance but escaped virtually unscathed. The truck's driver - who tried to flee the scene but was later apprehended - was reportedly very, very drunk.

The community was outraged. Their outreach to the family, both in terms of fund-raising for medical expenses and simple human kindness, has been awe-inspiring. (The family does have medical insurance, by the way; it just wasn't enough. What private-insurance policy would be, for such devastatingly high bills?)

Yet, where is the outrage when another family's house goes into foreclosure because of unpaid medical bills due to lack of insurance - or even due to a policy that looked good on paper but came up lacking, once Big Insurance's casuistic cost-cutters had sharpened their knives?

Where is the outrage when a young mother, just told she has Stage IV breast cancer, admits she felt several lumps months before, but delayed going to the doctor while she was between jobs? She waited too long. The cancer had advanced.

She knew, she confided in me later, that if she received a diagnosis while still unemployed and without insurance, her treatment for a pre-existing condition would probably never be funded. Never.

Knowing breast-cancer treatment can drag on intermittently for years, she did a grim mental calculation and concluded it was worth a roll of the dice. She lost. Yet, why should a human being, a child of God, ever have to roll such dice at all?

These aren't mere statistics. These are people I know personally. What's more, such stories could belong to any of us.

Any of us. (Unless we happen to be super-rich.)

I'm not an activist by temperament. I have political convictions, but on most issues I try to keep them to myself, not wanting to limit the reach of my ministry. Yet, I'm a cancer survivor who's looked into many a careworn face on the far side of a doctor's waiting room. I'm also a pastor who's held many whispered consultations with family members at the foot of hospital beds. I'm aware of how huge this problem is, how deep its personal bite can be. The Harvard statistics confirm what I've long known, on a gut level, to be true. Some - maybe even some of my parishioners - may wish I'd remain above the political fray on this issue. But, I can't. Lives are literally at stake.

It's not that those who oppose increased government involvement in healthcare funding are bad people. They have their own convictions, their own ideologies. Some honestly believe, as a matter of principle, that the private sector can do medical insurance better than the government can (despite compelling indications that Medicare beats the average private-insurance policy hands down, on most metrics). Yet, when it comes to the large number of Americans who have reasonably good insurance and who've never faced a major health crisis, they have no idea. They simply have no idea how close they or their loved ones are to the abyss. Each and every day.

As my daughter's friend has discovered, it's as close as one second in time when stepping out into a crosswalk.

This morning I was reading an eye-opening article, "No Country for Sick Men," in the latest issue of Newsweek. The author, T.R. Reid, makes a number of telling comments:

"'You have to understand something basic about Canadians. Canadians don't mind waiting for elective care all that much, so long as the rich Canadian and the poor Canadian have to wait about the same amount of time.'

In that last sentence, [Saskatchewan Medical Society official Marcus] Davies set forth the national ethic of health care in his country: medicine is not a commodity to be sold to the highest bidder, but a right that must be distributed equitably to one and all. In short, the Canadians have built a health-care system that neatly fits the Canadian character: ferociously egalitarian, but thrifty at the same time."...

(It's a question of fundamental values, in other words.)

"But the most important influence of national culture can be seen in the most basic question facing any country's health-care system: who is covered?

On this fundamental issue, the United States is the odd man out among the world's advanced, free-market democracies. All the other industrialized democracies guarantee health care for everybody - young or old, sick or well, rich or poor, native or immigrant. The U.S.A., the world's richest and most powerful nation, is the only advanced country that has never made a commitment to provide medical care to everyone who needs it."...

(Are we really so narcissistic in this country that we think we can be so right, and so many other nations so wrong?)

"Those Americans who die or go broke because they happened to get sick represent a basic moral decision our country has made. All the other rich countries have made a different decision: they cover everybody. A French physician, Dr. Valerie Newman, explained it this way: 'You Americans say that everybody is equal,' she said. 'But this is not so. Some are beautiful, some aren't. Some are brilliant, some aren't. But when we get sick - then, yes: everybody is equal. That is something we can deal with on an equal basis. This rule seems so basic to the French: we should all have the same access to care when it comes to life and death.'"...

(Isn't that just common sense?)

"That principle seems so obvious to people in Europe, Canada, and the East Asian democracies that health officials asked me over and over to explain why it isn't obvious to Americans as well. 'The formula is so simple: health care for everybody, paid for by everybody,' a deputy health minister in Sweden told me. 'You Americans are so clever. Why haven't you figured that out?'"...

(Oh, to see ourselves as others see us!)

"In the U.S.... some people have access to just about everything doctors and hospitals can provide. But others can't even get in the door (until they are sick enough to need emergency care). That amounts to rationing care by wealth. This seems natural to Americans; to the rest of the developed world, it looks immoral."

Yes, there are legal, economic and political aspects to America's bitter healthcare debate. Yet, I'm becoming increasingly convinced that the line of argument that dwarfs all these others is the moral one.

As a preacher, that's my department. And that's why I refuse to keep silent.

September 16, 2009 - Leaving on a Jet Plane

Sad news today, about the death of Mary Travers (of Peter, Paul and Mary fame). A blood cancer was the culprit – in this case, leukemia, with which Mary had been living for some years now.

From an MSNBC.com news article:

“Travers had undergone a successful bone marrow transplant to treat her leukemia and was able to return to performing after that.

‘It was like a miracle,’ Travers told The Associated Press in 2006. ‘I’m just feeling fabulous. What's incredible is someone has given your life back. I’m out in the garden today. This time last year I was looking out a window at a hospital.’ She also said she told the marrow donor ‘how incredibly grateful I was.’

But by mid-2009, [Peter] Yarrow told WTOP radio in Washington that her condition had worsened again and he thought she would no longer be able to perform.”

The last time I saw the trio in concert was a couple years ago, at the Great Auditorium in Ocean Grove, here in New Jersey. I suppose it was not long after her transplant. Mary leaned heavily on a cane, but as she opened her mouth to sing, she was a force of nature.

She’s leaving. Not on a jet plane (would that it were so), but on a far longer journey.

Mary’s powerful voice for peace, justice, love, hope – and, yes, faith – will be missed.

Go with God, Troubadour.

Leaving on a jet plane
by Lancer_MX

September 15, 2009 - Natural Born Killers

They’re calling it a “master switch” that can turn on the immune system’s ability to fight cancer.

Maybe that description’s overblown, or maybe it’s not, but British scientists have surely made a breakthrough by identifying a gene that stimulates the body’s production of NK, or “natural killer” cells, a type of white blood cell.

From an article describing the new development:

“Infusions of natural killer cells donated from volunteers are already given to some cancer patients. However, because they come from another person, they are not a complete match and so do not work as well.

The discovery of the 'master-switch' – a gene called E4bp4 that causes ‘blank’ stem cells to turn into natural killer cells – paves the way for a drug to boost the patient’s own stock of the cells.

(Natural killer cells, highlighted in red, in the spleen of a virus-infected mouse. To find where this picture came from, click here.)

Researcher Hugh Brady, of Imperial College London, said: ‘The natural killer cell was like the Cinderella of the white blood cells, we didn’t know very much about them.

We knew a little bit about how they work but we didn’t know where they came from.

We stumbled on this when researching childhood leukaemia. We thought the gene was involved in that. It turns it probably isn’t but it has a very important role in the immune system.

With a bit of serendipity we have found the key to the pathway that gives rise to natural killer cells.’”

A lot more research is needed, says Dr. Brady, before any medication that stimulates natural-killer cell growth is ready for prime time. Scientists aren’t even 100% sure that NK cells always have a beneficial function:

“Now finally, we will be able to find out if the progression of these diseases is impeded or aided by the removal of natural killer cells from the equation.

This will solve the often-debated question of whether NK cells are always the ‘good guys’, or if in certain circumstances they cause more harm than good.’”

Good guys? Bad guys? It’s a cell-eat-cell world out there in the microscopic regions of the human body, it would seem.

Let’s just hope the scientists are onto a whole lot of new good guys with this one.

September 14, 2009 - We're Number 37

My friend and fellow pastor Rob Elder shared this video on Facebook. Some guy's written this satirical ditty reporting that the World Health Organization has ranked the United States #37 out of all the world's nations in providing health care to its citizens:



From the WHO's press release on the subject:

"The U.S. health system spends a higher portion of its gross domestic product than any other country but ranks 37 out of 191 countries according to its performance, the report finds. The United Kingdom, which spends just six percent of GDP on health services, ranks 18th. Several small countries – San Marino, Andorra, Malta and Singapore are rated close behind second-placed Italy."

We can do better.

Yes, we can.

September 14, 2009 - I Stand Corrected

Friday I had a long-scheduled appointment with Dr. Lerner, following my most recent CT and PET scans. I didn’t feel at all anxious going into this appointment. One of the nurses had phoned me the day after the scan with a message from the doctor, saying there was no significant change. I’m still out of remission, but the cancer hasn’t grown perceptibly since it first reappeared. It’s the sort of ambiguous news I’m used to getting from this decidedly indolent cancer.

The news could have been better – “no cancer” – but that’s highly unlikely, from what I’ve been told about this form of NHL. It could also, of course, have been worse – “the cancer has grown.”

I’m at neither extreme. I’m living with ambiguity, learning to take comfort where I can amidst the uncertainty of watch-and-wait.

There was one peculiarity the nurse had mentioned. “Did you have a fall?” she asked.

“No, what makes you think that?”

“Well,” she replied, "the PET scan shows some hot spots near your right ribs. That’s consistent with a recent injury, or it could be just an inaccuracy in the test.”

Dr. Lerner explained, when I saw him, that the PET scan shows three spots on my ribs. If I don’t recall getting a jolt in the ribs, he said, it’s probably nothing significant – a false positive. This is because the more accurate CT scan shows nothing out of the ordinary. That’s the one we trust for a detailed diagnosis.

As for the thyroid nodule, the follow-up ultrasound revealed the nodule had grown no bigger. If that proved to be the case, my endocrinologist Dr. Sher had told me some months ago, it probably means the nodule is benign (as he suspected anyway, from observing it).

That’s the problem with all this high-tech medicine. These machines are so powerful, they sometimes reveal non-problems we never knew we had.

I did learn something new from Dr. Lerner this time around: a fine point about the grading of my disease. I’ve been telling people – and writing in this blog – that, after chemo, my grading changed from “diffuse mixed large and small cell” to “follicular lymphoma.” When I described my cancer as follicular lymphoma, Dr. Lerner corrected me. Scanning the pathology report from my most recent biopsy, he told me I don’t have that grade. What I have is “diffuse small cleaved cell” lymphoma.

They're similar. Both are B-cell. Both are indolent types. Yet, when my cells are slathered onto the microscope slide, they don’t display the follicles that give follicular lymphoma its name. (Here's a sample of diffuse small cleaved cell lymphoma I found on the Internet...)

Not being schooled in the ways of these tiny cells, I can’t imagine how that difference is important. Surely it will have some influence on my treatment plan, when the time for further treatment finally comes. The details are understood only by people who peer through microscopes.

In a Google search, I came up with a page that describes the difference:

“We have investigated the cellular origin and/or pathogenesis of follicular small cleaved cell lymphoma (FSCCL), diffuse small cleaved cell lymphoma (DSCCL) and intermediate lymphocytic lymphoma/lymphocytic lymphoma of intermediate differentiation (ILL/IDL) based on a series of immunologic and molecular genetic (bcl-1, bcl-2 and bcl-3 genes) studies. These studies have led to the conclusion that the cellular origin or pathogenesis of ILL/IDL and DSCCL is distinctly different from that of FSCCL: (1) FSCCL is a neoplastic counterpart of follicular center cells (FCC) of secondary follicles because of the presence of CD10 and bcl-2 gene rearrangement and the absence of CD5 and bcl-1 gene rearrangement; (2) DSCCL and ILL/IDL are a neoplastic counterpart of mantle zone (MZ) B lymphocytes because of the presence of CD5 and bcl-1 gene rearrangement and absence of CD10 and bcl-2 gene rearrangement; and (3) FSCCL scarcely develops into DSCCL, and the previously proposed concept that DSCCL represents a diffuse counterpart of FSCCL does not hold good.“

Well, that’s clear as mud, isn’t it?

I’m just glad my DSCCL is indolent, like the FSCCL I formerly thought I had. Keep your siesta going, cancer cells. I can wait.

September 8, 2009 - Turned Toward Blessing

Today I come across a blog entry from last April by Dana Jennings, a New York Times reporter being treated for aggressive prostate cancer. Dana is Jewish, and writes eloquently on the intersection of faith and cancer. Here’s an excerpt:

“One of our cultural verities about serious illness is that it often challenges our faith. But for me, if anything, having cancer has only deepened it, heightened it.

I have spent the past year in the dark ark of cancer, and there is no question that I have become a new man. I’ve been granted a wisdom that only arrives at the rugged confluence of middle age and mortality. And I know, soul deep, that I have not been cut open, radiated, and tried physically and spiritually so that I can merely survive, become a cancer wraith. Since my diagnosis – after shaking off the initial shock – I have kept asking myself, in the context of my belief: What can this cancer teach me?

The most surprising thing I’ve learned is that cancer can be turned toward blessing. Through the simple fact of me telling my cancer stories on this blog, many of you readers, in turn, have told your own stories. And that mutual sharing of our tales has changed my life for the good. Rabbi Abraham Joshua Heschel said, 'Life is not meaningful, unless it is serving an end beyond itself, unless it is of value to someone else.'”

I like Dana's concept of cancer being “turned toward blessing.” I won’t ever be able to consider cancer a good thing, but our miraculous God can wring blessings out of even the darkest episodes of life.

In a remarkable way we, too, can be turned toward blessing. When we are able at last to make the move from cursing our fate to blessing others by our actions, we know the seeds of healing are taking root in our lives.

September 7, 2009 - Happy With Your Health Insurance?

Today I heard a phrase I’ve been hearing a lot lately in news reports about the health-insurance debate. It’s the concept of people who are “happy with their health insurance.”

Are you one of those satisfied consumers? Are you truly happy with your health insurance?

You’d think there must be an awful lot of happy Americans out there, the way Washington politicians have been spreading that phrase around, thick as manure.

I suppose there may actually be a few pleased policyholders out there. The nature of insurance, after all, is that some people need it more than others. Those who don’t submit many claims tend to be happy with their coverage. They take comfort in holding that wallet card. They feel protected.

Even if their medical safety-net is spun from pure fantasy, they feel protected. Maybe even happy.

The true test comes with hard times. I wonder how many who are happy with their health insurance have chronic medical conditions? These are the people who deal with the real world of medical insurance, not fantasy.

I’m fortunate enough to be doubly covered. The Blue Cross/Blue Shield insurance I receive through the Presbyterian Church is pretty decent. The secondary Qual-Care spousal coverage we purchase at group rates through Claire’s employer, Meridian Health, is a valuable back-up. It takes a big bite out of my 20% Blue-Cross/Blue Shield co-pay – which, when it comes to things like PET scans, can add up to a pretty penny.

Even so, I’m not happy with my health insurance. I’m not happy because I know I have to watch both insurance companies like a hawk. I know their profits are dependent on their denying customers’ claims. I know they reward their employees when they find reasons to deny or reduce payments – if not with outright bonuses, then with favorable performance reviews. I know there are so many middlemen and -women involved in the whole unwieldy process, so many paper forms, faxes and e-mails flying around, that there’s a huge potential for error. Just one omitted or misplaced pre-certification, one out-of-network service booked in error, and I could be left holding the bag for big bucks.

That unwieldy insurance bureaucracy – so complex, even the doctors’ professional claims-processors can’t make sense of it – adds as much as 30%, by some reckonings, to the cost of my medical care. Ultimately, that’s the cost of employing an army of people to push paper and tap on computer keys, not to mention squeezing quarterly dividends out of the system to keep insurance companies’ stockholders happy. It has nothing to do with the quality of my medical care.

I’m not happy with that.

Then, when I imagine the prospect of pursuing cancer testing and treatment without any medical insurance, I’m even less happy – not so much for my own sake, as for the sake of my at-risk neighbors who must do exactly that. I’m not happy being the beneficiary of a system that values stockholders more than sick people.

Dr. Len Lichtenfeld, a physician, has it right, in an August 8, 2009 blog entry on the American Cancer Society website:

“We have too many instances-and too many bankruptcies-where ‘satisfied’ people suddenly found themselves not so ‘satisfied.’ I am willing to bet that you (and me) have no idea whether or not your insurance will be a facilitator or a barrier to your care if you or someone you love becomes seriously ill with a disease like cancer. You just don’t know.

So don’t stand there and rail against your Congressman or Senator because you are ‘happy’ with your health insurance. I wonder how many of you have had a serious, prolonged illness in your family. If your experiences have been positive, terrific. But don’t discount that many others have not been so fortunate.”

Those yahoos shouting their Senators down at town hall meetings don’t seem to realize that this issue transcends any individual right to happiness. Are you happy with your health insurance, Mr. Redface Shoutington? Too bad. Your happiness can’t come at the expense of your neighbor, who worked just as hard as you did over the years, but who was either self-employed or whose employer wasn’t as beneficent as yours when it came to health benefits.

It’s a moral issue. Never before, in human history, has care of the sick been viewed as sick people’s own problem. It’s always been a community responsibility.

Some anthropologists, I’m told, date the rise of the human race according to the first skeleton they ever dug up that had a broken bone someone else had set.

We’re all in this together. That’s where true happiness comes from.

September 6, 2009 - Positively a Survivor

Today I come across a helpful website for cancer survivors from “across the pond.” It’s the MacMillan/CancerBackup website – evidently, a recent merger of two cancer-support sites.

There’s a lot of helpful stuff here about feelings and relationships, and how they impact the lives of cancer survivors. One item I found myself nodding along with addresses the whole subject of “being positive” – that common advice others often extend to us. Some of us may find ourselves thinking we ought to keep a positive attitude all the time, and that this is somehow essential to our wellness. Not so, says this website:

“When you talk to people with cancer, even the most positive of them will admit to low times when they felt depressed and anxious. No one can be positive 100% of the time. It’s important that you don’t feel that you must always stay on top of things. Being positive doesn’t mean having to feel happy and cheerful all the time. It’s a positive thing to acknowledge and talk about your feelings – even when you’re feeling tired, worried, depressed or angry.

There may be times when you want to talk about a difficult topic like the chance of the cancer being cured or making a will. Comments about being positive are then not always helpful - in fact, they can be very upsetting.”

Sometimes, you just can’t respond positively to cancer. There’s sadness associated with it, anger, even depression. It does no good to try to stuff powerful feelings like these, to deny that they’re present, out of a mistaken belief that keeping a sunny attitude is somehow therapeutic.

I think the most therapeutic thing, actually, is to try to keep closely in touch with our true feelings, to acknowledge them, to deal with them appropriately. This doesn’t mean bleeding all over our friends and family, emotionally speaking. But it does mean freeing ourselves from any prejudgment that there’s a particular way we ought to be feeling.

Most of us, I suspect, would do much better if we’d seek to banish that little word “ought” from our thinking, when it comes to feelings.

September 4, 2009 - PTSD?

Here’s a selection from a recent entry in the blog of Kaylin Marie, a young adult with cancer:

“...cancer doesn't end once you're in remission. It becomes a terrifying part of you, kind of like how Tom Selleck and his moustache have become one single entity. It haunts your dreams. I could go on.”

She then quotes D.H. Lawrence:

"...Slowly, slowly the wound to the soul begins to make itself felt, like a bruise, which only slowly deepens its terrible ache, till it fills all the psyche. And when we think we have recovered and forgotten, it is then that the terrible after-effects have to be encountered at their worst."

– Cancer Is Hilarious blog, August 13, 2009

That’s pretty heavy. But it’s the reality of cancer. Once you have the disease, the thought of it never completely leaves you.

There are triggers that can bring the whole experience roaring back. I remember I had an old, green shirt I used to wear to my chemo sessions. It had buttons down the front, which was a convenience when it came time to access my port. It was old and just a bit threadbare, which meant I wouldn't much care if some Betadine stained it. For months after my treatments were over, I could take one look at that green shirt and feel a wave of queasiness come over me. The shirt was a trigger.

The good news is, this sort of thing does get better with time. I don’t imagine Kaylin Marie has discovered that yet, because her treatments were so much more recent than mine. Yet, even so, that shirt will be, forever after, my chemo shirt. It hangs in the closet. I rarely wear it. These days, though, I can stand to look at it without it carrying me instantly back to the chemo suite, like some magic carpet.

I suppose there are some elements of post-traumatic stress syndrome (PTSD) in the cancer experience. Time may not heal all wounds, but it does seem – gradually, imperceptibly – to heal this one.

September 3, 2009 - Help a Bald Brother Out

I don’t know why I’m on such a video kick lately. People send these things to me (often on Facebook), and I pass ‘em on.

Here’s Larry David, of Seinfeld fame:

Larry David: Help A Bald Brother Out - watch more funny videos

September 1, 2009 - A Little Medical-Insurance Humor