Sicko

No, I haven’t seen the Michael Moore movie. I don’t have to. I know the American health care system is in trouble.

And I’m warning you right now, there will be a little bit of ranting in this post.

I just finished reading a series of comments in a patient forum in which several people made catty remarks about how Michael Moore makes them ill, and about how that great bugaboo of the right wing -- “socialized medicine” -- will end life on Earth as we know it. (How many of these same people would volunteer out of principle to give up their "socialized" Medicare benefits, I wonder?)

The real sickos, it seems to me, are people who don’t give a damn about those of their fellow citizens who aren’t insured, or who have substandard insurance, or who can’t get insurance because they can't afford it, or who are rejected by insurance companies because of pre-existing conditions like chronic lymphocytic leukemia. People whose answer is “go to the emergency room, they have to take everyone.” Or “find a free clinic.” Or “establish a medical savings account,” as if the average American can sock away enough money to pay for the treatment of cancer or a chronic disease.

Tell it to this guy, who just “sold” his Stage 4 Non-Hodgkin's Lymphoma on eBay for $242.50. Since auctions eventually are taken down from the eBay site, let me quote from his listing, and let me also post a picture of him and his family so that you can see everything that is at stake here:

Well, I've sold almost everything I own to make ends meet, I've nothing left so I thought I may as well try and sell my cancer on ebay. I was diagnosed at age 39 with Stage 4 Large Diffuse B-cell Non-Hodgkin's Lymphoma in April of 2007. I Recently finished my 6th (and hopefully last) round of chemo-therapy. I am trying to sell mainly because of my families dire financial situation, but my little twin boys are afraid that daddy won't make it, so I promised them I would try and sell it on eBay.

I obviously cannot send anyone any physical cancer, but the winning bidder will receive before and after photos from PET Scans and MRIs done on my entire body. But mainly the winning bidder will get the satisfactory feeling of helping out a family of 5 in grave financial distress.

In mid October I am scheduled for another PET Scan. If that is clean I will be in complete remission and the winning bidder will also receive a thank you card every year on that date for the rest of my life. In the unlikely event that this cancer takes my life, the winning bidder will receive a short biography of my life and a copy of my obituary. There is no reserve so please bid high and help my family survive this crisis. If you need proof that this is no joke you can send me a message and I will give you absolute proof. Thank you and God bless!

Or tell it to the CLL patients who I see posting on forums saying things like: I need treatment but I have no insurance. How can I pay for it without going into bankruptcy? Or things like: I am taking herbs for my CLL because I lost my job and can’t get insurance.

I have seen both these comments, and many more, in the few years I have been reading patient forums.

Is health care a right or a luxury?

These situations bring up the question: In a civilized modern society, is health care a right or a luxury?

There was an interesting discussion of this on an Oprah show where Moore and others appeared. Here's a quote:

Princeton University professor Uwe Reinhardt, one of the nation's leading authorities on health care economics, says the health care debate all boils down to a single question. "Should the child of a gas station attendant have the same chance of staying healthy or getting cured, if sick, as the child of a corporate executive?"

Professor Reinhardt says people need to decide whether medical care should be like public education — where every American simply has a right to it — or if it should be treated like a luxury good. Currently, he says health care is like fine dining -- if you have the money, you get it, and if you don't, you won't.

When hurricanes or other natural disasters hit, Professor Reinhardt says the government steps in to help victims. "That's social insurance," he says. "It's a natural disaster, and I would say if a lady in Mississippi has breast cancer, isn't that a natural disaster, too?"

As Michael points out in Sicko, Americans rely on many socialized services, like the police department, public libraries and the fire department. The U.S. Army even provides socialized medicine for all enlisted men. "I'd like to call it Christianized medicine because this is what Jesus would do, right?" he says. "He wouldn't let the child of a gas station attendant go without."

Of course, the right-wing solution, even among some of those who profess their faith all too loudly, boils down to this: Go die. Stop bothering us. Let us continue to bankrupt this country through a misguided war that will put the nation in debt for a generation. Expand the program providing health care for children? Surely you jest. That will lead to more government (which, as we all know, is much worse than having more of a health care crisis). Heck, let the free market take care of it: sell your disease on eBay!

Lucky for me, I guess, that I'm an eBay powerseller. As a self-employed individual with cancer, I can tell you for a fact that it is impossible to get insurance without some form of government intervention. There is a patchwork of programs depending upon the state you live in; there is no consistency to it or to the quality of coverage. I will need a stem cell transplant eventually but here in Arizona there is no way that I can get insurance that will pay for one. Neither would there be a program for me in California. But both New Mexico and Texas would cover me. Fortunately, I am in a position to move. Not everyone is.

These issues are but a few of the problems our insurance system faces: Rising costs and declining benefits confront many in the middle class. Companies are squeezed financially and can no longer afford to offer insurance to their employees. For the first time, there is a growing demand from business as well as from average Americans that something be done. And the conservative solution of "leaving it up to the states," which are in varying states of financial health, is no solution at all.

So what is the solution?

As much as I admire Michael Moore for raising issues that need to be raised, I do not favor a single-payer national health system to replace private insurance. There was a time when I did, and then I came down with CLL.

One thing I realized is that in countries with systems where care is rationed -- and where oversight boards of some kind, no matter how well-intentioned, decide who has a right to get what treatment -- the drugs that my doctor and I think may help me the most may not be available. Rituxan is not easy to come by in either Canada or the UK, for example, and therefore the standard of care for CLL is probably not as good as it is here. Australians have a heck of a time getting some prognostic tests, like IgVH mutational status, done. These are some examples I know from personal experience; there are no doubt others that relate to other conditions.

I saw Democratic presidential candidate John Edwards talking on C-SPAN a week ago. He was being interviewed by reporters who cover health care issues. Edwards was among the first of the presidential candidates to lay out a comprehensive plan on health insurance and he may have hit upon a workable solution, or one that is about as workable as we're going to get.

Edwards would cover everyone, and everyone would have a choice: they could continue with private insurance, improved through the establishment of regional health care markets to increase choices and cut costs; or they could sign on to a Medicare-style public insurance program.

This makes the most sense to me: preserve freedom of choice while making sure everyone is covered. Edwards said that the beauty of his approach is that eventually American citizens would vote with their feet and gravitate toward the system they liked best.

What will they choose? Who knows. But it is evident from all the polls, despite the howling from the right, that they are no longer choosing to let things go on as they are.

I'll close with this quote from the Oprah article:

To get health care coverage for every man, woman and child in the United States, Professor Reinhardt believes it would cost about $100 billion in additional government spending. That's the same amount the government spends in nine months to fund the war in Iraq, he says.

AFTERWORD

This topic is an emotional one, as the comments section shows, and I plead as guilty as anyone. I am not always sure that I am right about a given issue but I am willing to go to the mat on this one.

There is one last point I want to make: If the private insurance system were willing and able to cover everyone and keep costs reasonable, I'd be all for it. For me, this is a practical issue much more than it is an ideological one.

But the private system is failing. Government, in the form of a patchwork of state programs and such federal efforts as SCHIP to cover children, is already involved. Medicare, for another example, has a major impact on compensation for care outside the Medicare system. It is a all a royal mess, and it would be far more intelligent for government to play a reasoned and constructive role in dealing with the whole problem, not bits and pieces of it. In this effort, there will no doubt be a role for private insurers and medical providers. But there will also by necessity be a public aspect, and it is a greater good to care for those without care than it is to deny care by refusing to change the system on ideological grounds. People who die of cancer and other diseases do not go to their graves as Republicans or Democrats: they go as human beings, and that is the bottom line for me.

RESOURCES

For a comprehensive rundown of insurance options state by state, visit this excellent website: healthinsuranceinfo.net

For information about states that have high-risk insurance pools that may cover patients with nasty pre-existing conditions such as CLL, go here.

State health risk pools that have websites:

• Alabama Health Insurance Plan
• Alaska Comprehensive Health Insurance Association
• Arkansas Comprehensive Health Insurance Plan
• California Major Risk Medical Insurance Program
• Connecticut Health Reinsurance Association
• CoverColorado
• Idaho Individual High Risk Reinsurance Pool
• Illinois Comprehensive Health Insurance Plan
• Indiana Comprehensive Health Association
• Health Insurance Plan of Iowa
• Kansas Health Insurance Association
• Kentucky Access
• Louisiana Health Plan
• Maryland Health Insurance Plan
• Minnesota Comprehensive Health Association
• Mississippi Comprehensive Health Insurance Risk Pool
• Missouri Health Insurance Pool
• Montana Comprehensive Health Program
• Nebraska Comprehensive Health Insurance Plan (CHIP)
• New Hampshire Health Plan (NHHP)
• New Mexico Medical Insurance Pool
• Comprehensive Health Association of North Dakota (CHAND)
• Oregon Medical Insurance Pool
• South Dakota Risk Pool
• Tennessee's Tenncare Program
• Texas Health Insurance Risk Pool
• Utah Comprehensive Health Insurance Pool
• Washington State Health Insurance Pool
• Wisconsin Health Insurance Risk Sharing Plan
• West Virginia Health Insurance Plan
• Wyoming Health Insurance Pool

Butt ugly

One of my many inspirations that has never come to fruition is the Museum of Bad Art. I got the idea for this -- it was to be an actual brick and mortar place done up with all the solemnity and seriousness of a major art museum, from the careful lighting to the little descriptive cards next to the paintings -- after having gone to too many thrift stores in too short a period.

This was about 15 years ago, and the crowning glory of the collection, the canvas that would have been kept behind glass with a security guard at the ready to ward off demented knife-wielding slashers or sorely misguided art thieves, was Devil on the Toilet.

Devil, as aficionados would have called it for short, was discovered at the Goodwill store in New Paltz, NY. I marvel to this day that the same species that built the pyramids, created the fugue, and learned to fly could also have conjured up this image and set it to velvet: Satan, with horned ears and pointy tail, outlined in red, sitting upon a silver toilet, cigarette in hand, his demonic visage twisted into a grimace.

The artist, who left the work unsigned, provided these stark brush strokes against a completely black background, making the Devil’s distress all the more, um, jarring. For here we see the Prince of Darkness trapped in his own existential Hell -- ah, the irony! -- his powers sapped by the need to perform a simple bodily function. Unable to complete the task at hand, Satan himself is reduced to a pitiful state, a figure as powerless as the mortals he is so wont to lord over. Who is the tormented one now? (A facsimile of the original appears above -- apparently there is a guy in Tijuana churning these out and you can buy them on eBay for $35. The original Devil, it should be noted, did not bear the words “help” and "ouch." Unlike the work of this poseur, it spoke with an admirable degree of subtlety.)

Alas, I did not purchase Devil, even though it was severely discounted, for it had the piercing capacity, like bad paintings of clowns, to provide fodder for freakish nightmares. But it came to mind recently as I embarked on what is for me a new medical procedure: the colonoscopy.

Yes, friends, it has finally happened. I am reduced to writing about poop, the old Number Two. Passing waste through the body is the work of our friend the colon, and being 50 years of age, I have been bombarded with advice that it is time to have it checked out. Girls have their sweet 16, when you turn 21 you can legally drink, when you’re 35 you can run for president, and at 50 you had better get a tube stuck into your nether regions. Ah, the joys of life’s little milestones.

Colon cancer and CLL

Now, lest you think this has nothing to do with chronic lymphocytic leukemia, there is some evidence that CLL patients may be at greater risk for colon cancer. Some of the genes that are overexpressed in B-CLL cells are also involved in colon cancer, as well as other cancers.

To quote one mind-bogglingly complex paper from the Mayo Clinic (the sort of read that has you saying to yourself, “Am I really this stupid?”) “ . . . 31 genes were overexpressed in B-CLL cells. Of these 31 genes, 16 were previously identified as related in one way or another with an oncogenic transformation. For example, LEF-1, a transcription factor involved in development, has been shown to be involved in many cancers, most notably in colon cancer.”

Translation: CLL may open a Pandora’s Box of dysfunction that could predispose you to other cancers.

According to Dr. John Byrd of the James Cancer Center at Ohio State University, “We recommend routine cancer screening, such as colonoscopies
every three to ten years, depending upon the risk category that you fall into.” (Gastroenterologists recommend colonoscopies every five years after the age of 50.)

It is interesting, in a morbid sort of way, to note that B-CLL cells, which are known to travel far and wide, can also be found in the colon. I know of one patient who was diagnosed with atypical CLL after aberrant results from a colonoscopy. According to Dr. Terry Hamblin, “In CLL it would not be unexpected to find small lymphocytes anywhere in the body, so finding them in the colon may not be significant.”

Hamblin says the jury is still out on whether CLL patients are more predisposed to colon cancer:

“CLL and colon cancer are both fairly common diseases of the late middle-aged and elderly. It is very hard to demonstrate that it is truly commoner than one would expect. The problem is that everybody with colon cancer gets a blood test (which would diagnose CLL) and not everybody among the 'control' population does. Similarly, colon cancer is best diagnosed by those who take an interest in their health, which describes most people with CLL. There is good evidence that skin cancers are commoner in CLL and also probably lung cancer, but the statistics for colon cancer vary from study to study.”

Let the anal probing begin!

I think we can all at least agree that, whether CLL is a factor or not, age is. The good news is that colon cancer is largely preventable and successfully treatable if it is detected early enough.

All this means that there is no good reason not to have a colonoscopy. But like people who put off dental work until they lose their teeth, there are those who put off colonoscopies until they lose their lives. Common excuses include loathing the stuff you have to drink before the procedure and not wanting strangers to probe where the sun don’t shine.

There are those, of course, for whom the whole subject of Number Two is fraught with drama. I have a relative, who shall remain nameless, whose family is obsessed with shit. Her mother usually could not poop in any toilet but her own, making cruises and vacations rather uncomfortable. A successful evacuation of the bowels was a big deal in that family, a cause for much strutting and praising. My relative, well into her middle years, would emerge from the bathroom at times in triumph, announcing to all who cared to hear: “I made a good doodee!” If only our poor Devil could say the same, trapped forever in a vicious circle of anticipation and disappointment.

I don’t have these issues. I have always been, how shall I put it, a regular guy. And after sitting in the infusion room hooked to an IV pole and surrounded by fellow cancer patients in various states of health or the lack of it, having a tube stuck up my butt doesn’t seem like such a big deal.

By consensus, the worst part of the colonoscopy is the prep. In my case, this involved drinking four liters of something called Go-Lightly, my nominee for the most misnamed product on Earth. While the “go” part is accurate, there is nothing “light” about it. For those who have not had the pleasure, imagine drinking an eight ounce glass of salt water every ten minutes for two hours. I managed this by taking a lemon-line soda chaser after each glass to eliminate the taste from my mouth. Over the course of time, two things happen: One, you start to feel incredibly bloated. Two, you start to spend the evening on the toilet as the product works its magic. A more accurate name for the product at this point would be The Ass Blaster.

The colonoscopy itself is anticlimactic. (Note to CLL patients with swollen spleens: let the nurses know so that they can take extra care when turning you on your left side.) Anyone who has ever had chemo is familiar by now with being stuck with needles and put on an IV drip. I was given 50 mg of Benadryl, followed by an anesthetic called Versed and a painkiller I didn’t catch the name of because I was asleep by then. I awoke some time later to see the doctor and two nurses congregating about my posterior, removing the endoscope and chatting about the weather. On a video monitor next to them I saw some images of my innards flash rapidly by.

The end result (oh glorious pun!): My colon is picture perfect.

“Come back and see me in 5 years,” the doctor said.

Back to the art world

Due to lack of my winning Powerball, my museum was never built, although another great mind with the same thought eventually started one and put it online a few years ago. (Despite the presence of some delightful works -- a few of which I have presented here -- believe me, they have barely scratched the surface.)

Not all thrift store art is bad. One can view some of the better samples at Goodwill’s online auction site. Indeed, thrift store art is sometimes surprisingly good. Antiques Roadshow regularly showcases examples where people bought paintings for ten bucks, only to find out that they’re by so-and-so and are really worth $10,000.

Marilyn and I have had no such luck, although we did stumble across some nice works at a Savers in Phoenix by a regional artist, Susanne Nyberg, who is alive and working. It was as if she was clearing her studio of things that she didn’t like all that much, but it still looked good to us.

And then there are the James Swinnertons. These are two large desert landscapes we bought at a Goodwill. I say they’re reproductions, Marilyn insists they’re probably real. One of these days we’ll have them checked out. If you ever see Marilyn doing her unique triumphal dance on Antiques Roadshow, you’ll know why.

Detail, above, from Frolicking Raccoons, acrylic on canvas board, and the only bad thrift store art we actually ever purchased. (At 69 cents, it was irresistible.) Below is the full work. How many critters do you see? The artist, simply known as Gil, has cleverly painted over at least one, using his masterful skills to blend errors into the landscape.

UPDATE

This gem was discovered at the Goodwill store in Prescott, AZ. It appears that Spot is about to join the Union army during the Civil War. He can probably expect some "ruff" times ahead.

Some good news on the AIHA front

After a struggle with autoimmune hemolytic anemia (AIHA) that extends back to March, I have finally gotten some good news: I am less Coombs positive than I was before.

The Coombs, or Direct Antiglobulin Test, measures whether there are antibodies to red blood cells (Bad immune system! Bad!), which leads to their destruction by macrophages. When I relapsed with AIHA in July, the test showed positivity for anti-IgG of 2+ and anti-complement of 1+. As of now, after a month and a half of steroid and Rituxan therapy, the anti-IgG is down to 1+, and the anti-complement has reverted to negative.

What does this mean? Well, combined with ever-improving red counts, healthy haptoglobin levels, and reducing reticulocytes -- what those things signify is discussed in that link above -- it means that I may, just may, be winning the battle with AIHA. Conversion to Coombs negativity, according to Dr. Kanti Rai, portends a much longer remission from this nasty CLL complication, and that is what I am hoping to achieve.

Dr. O’Leary, my hem/onc, wants me to stay on maintenance methylprednisolone for the foreseeable future, and so today I start my 4 mg maintenance dose. This is equivalent to about 5 mg of prednisone, which is standard in these cases, and which some patients are on for up to a year before their AIHA resolves completely. At a three or six month interval, he’s not sure which, O’Leary wants to add more Rituxan -- which he pronounces “Rye-tuxin” for some reason -- to goose the response.

As with anything related to CLL, there are no guarantees. The first test will be seeing if 4 mg is enough to hold me; we’ll do some blood work in two weeks to check the progress. (Fortunately, I have tolerated the steroids well at much higher doses, so one pill a day should be smooth sailing; moving back to two, if need be, would not be burdensome. The main side effect I have had from steroids of late is pimples on my chest. Go figure.)

What this could also mean is that I might avoid harder chemo for awhile longer. That would be the next step if steroids were to fail. Certainly, after my AIHA relapse in July, it was weighing heavily on my mind. But I am glad I didn’t panic and jump when I didn’t need to. (Here I followed my own Three-Day Rule, which dragged on to something like thirty days in this case.) While it is essential to stay on top of autoimmune symptoms and CLL complications, it also makes sense to use the least invasive method to treat them if there are no compelling reasons to use a stronger approach. The fact that I am responsive to steroids -- the first time around I was almost assuredly taken off of them too soon, which accounted for the relapse -- argued that steroids were worth another try when relapse came.

The overall state of my CLL was also not, I concluded, compelling enough to warrant harsher treatment. My CLL, in fact, is under pretty good control right now. My marrow is doing well: platelets are healthy, and my ability to pump out gazillions of reticulocytes (baby red cells) is a good sign. Nodes are reduced significantly, or as O’Leary puts it, I have less of a “bull neck.” My spleen is only mildly swollen (just the tip can be felt below the rib cage.) The liver, which became somewhat enlarged after my low-dose Rituxan earlier this year, is, according to O’Leary, “right where it should be.” My lymphocyte count is about 48k, actually down a few thousand from the previous test.

So, for the moment, I have achieved a reprieve. Marilyn and I will be taking a little trip, with some extra methykprednisolone packed away, not to mention prescriptions for acyclovir (in case of sudden shingles) and augmentin (in case of sudden infection) in my wallet. Such is the CLL (working) vacation, but I am glad to have one.

AFTERWORD

As it turns out, this was the calm before the storm.-- November 19, 2007