Wow!

This is just hilarious.

Pea Soup for Brains

I apologize for not having written much lately. I think the prednisone is affecting the part of my brain where creativity usually percolates. Lately it feels more like it's sputtering, like when you heat up split pea soup.

Brains are so...complicated. Only certain areas seem to be involved. I can focus fairly well and just finished reading a long novel (which kind of stunk but I hung in there for the absolute worst ending ever). But when it comes to creating something--gathering together the bits and pieces of a story I have in mind and stitching them together into sentences, paragraphs and a post-- it just isn't happening.

A few weeks ago when the prednisone dose was really high, my mind was like being in one of those game show booths filled with money when they turn on the fan. I couldn't grab hold of any thought for very long.

This is different. This is driving in the fog. You can see parts of the road, but it's the parts you can't see that unnerve you. (Wait a sec. "Unnerved" is too dramatic a word to describe how I feel. Something between "unnerved" and "unfazed" is what I'm looking for. Ugh, I'm just not finding the right word in my head. Where did all the words go?)

See what I mean?

Veteran's Day Prayer

With gratitude for those who have risked their lives
hoping to protect others
I pray
for all existing wars to end
for all new wars to be averted
for all people to know peace
in their minds
in their hearts
and in every fiber of their being

There never was a good war or a bad peace.
~ Benjamin Franklin

Republicans on Charade

Today I watched this MSNBC.com video of somber, "concerned" Republicans in the House of Representatives taking pot-shots at the Democrat's health care reform bill while trying to bolster support for the "Hey We Got One, Too!" Republican bill. They were unconvincing, to say the least.

Rep. Mike Pense tried his best to look gravely concerned. He was near tears as he described an upcoming meeting with WWII veterans, telling how he'd make sure to spend time shaking every hand and thank them for risking their lives for protecting our freedom. He tried to link that somehow to Democrats who might vote with Republicans. (I don't get the connection. And given their abysmal track record with veteran's affairs, I really don't think Republicans should be bringing up the subject.)

Rep John Boehner spent the most time talking. I was curious about his voting record on health issues and looked it up on Project Vote Smart :

2008 Supported the interests of the Academy of General Dentistry 0%

2007-2008 Supported the interests of the National Breast Cancer Coalition 25%

2007-2008 St. Joseph Health System gave Rep. Boehner a grade of 0.

2007-2008 Supported the interests of the The Children's Health Fund 20%

2007 Supported the interests of the Alliance for Headache Disorders Advocacy 50%

2007 Supported the interests of the American Academy of Family Physicians 0%

2007 Supported the interests of the American Society for Therapeutic Radiology and Oncology 0%

2007 Supported the interests of the Assoc. of University Centers on Disabilities 0%

2007 Depression and Bipolar Support Alliance gave Rep. Boehner a rating of 50.

2007 Supported the interests of the League of Women Voters 0%

2007 On the votes that The Children's Health Fund considered to be the most important, Rep. Boehner voted their preferred position 0% of the time.

OpenSecrets.org reports that in this last election cycle Rep. Boehner received $445,000 from the health care industry-- 88% of it from Health Insurance and Pharmaceutical Manufacturers. In fact, during this same period, Rep. Boehner was the #2 Top Recipient of Contributions from the Pharmaceutical Industry in the entire House of Representatives.

House Minority Whip Eric Cantor also chimed in, so I took a look at his voting record as well :

2008 Supported the interests of the Academy of General Dentistry 0%

2007-2008 Supported the interests of the National Breast Cancer Coalition 0%

2007-2008 St. Joseph Health System gave Rep. Cantor a grade of 8.

2007-2008 Supported the interests of the The Children's Health Fund 30%

2007 Supported the interests of the Academy of General Dentistry 0%

2007 Supported the interests of the Alliance for Headache Disorders Advocacy 100%

2007 Supported the interests of the American Academy of Family Physicians 0%

2007 Supported the interests of the American Society for Therapeutic Radiology and Oncology 0%

2007 Supported the interests of the Assoc. of University Centers on Disabilities 0%

2007 Depression and Bipolar Support Alliance gave Rep. Cantor a rating of 50.

2007 Supported the interests of the League of Women Voters 20%

2007 On the votes that The Children's Health Fund considered to be the most important, Rep. Cantor voted their preferred position 0% of the time.

Rep. Cantor accepted $341,000 from the health insurance industry for his last election--the second largest industry to support his campaign.

At the end of the charade, when they had grown tired of feigning outrage and promising to protect Americans, Rep. Boehner said, "The American people do not want this." Rep. Boehner, you are absolutely right. We don't.

Life at 30,000 Feet

Wegener's and the drugs used to treat it are like flying into a big cloud. You lose all sense of direction, often not having any idea if you're getting better or worse. All the usual visual cues are gone, and it can be very disorienting. You have to rely on flight instruments-- diagnostic indicators in the case of Weg's-- knowing full well they're often not reliable. And you can be flying along just fine and suddenly hit turbulence. It's invisible-- no way to brace yourself ahead of time, no way to guess when it might end. Sometimes a suitcase falls out of the overhead bin and hits you on the head, too.

This is an ongoing issue with Wegener's. I've gotten better at being comfortable with uncertainty. Better. Not expert.

A few weeks ago I flew straight into a new cloud. The chemo I was on for four months failed to control the Weg's and almost killed me in the process. That was a cloud I've flown into before, though. (I knew it was weakening me. Thankfully my awesome Hopkins doc agreed and issued a parachute before the plane went into a tailspin.)

The new cloud is a new drug--Rituximab, for those in the know. It's a genetically-engineered antibody. Unlike all the other drugs I've been on, I have no idea how to work with this one. Symptoms (or side effects, who can tell?) flare up and recede without warning, and I generally feel like a pile of suitcases has fallen on top of me. I daydream about running for the emergency exit, sliding down the big, inflatable slidy thing and shouting, "I'm out! I'm out!"

I know so many Weggies and other people who also live in the clouds of incurable and/or unpredictable disease. So many of them have it far worse than me. Please say a prayer for them, that all may see sunny skies again.

Life and Death, Part 4

The final part to Keith Olbermann's "Special Comment" :

So far we've covered our collective unwillingness to admit that this isn't a health care debate. We are talking, ultimately, about pain, and life and death. I've recapped my own father's trip through our health care system. And we've looked at the horrible statistics that this country is 19th world-wide in preventable deaths, worse than Portugal. And how, if the current gap between the insured and the uninsured continues to grow, at this pace, by the year 2020, the uninsured will be 53 percent more likely to die than will the insured, a number that matches exactly, the increased mortality rate for the poor in the England of Charles Dickens.

What do we do?

I do not know who the two women were, yet they are indelibly burned into my memory. They stood outside, on a crisp New York morning last week, middle-aged, short, looking more than a little weary. They were wearing lab coats, and they were leaning against what those coats told me was their place of employment, the Mortimer B. Zuckerman Research Center at Memorial Sloan-Kettering Cancer Center.

The women in the cancer researcher's lab coats were smoking cigarettes. I have seen a lot of startling things in my more-than-40 days and 40 nights alongside my ailing father inside this nation's fractured health care system, but nothing seemed to better symbolize the futility, the ram-your-head-against-a-wall futility, of this gigantic medical entity that we have created, that seems to have not only broken free from human control, but has, to some great measure, enslaved us.

Twenty-three stories tall, built partly with a 100-million dollar gift from the publisher of the New York Daily News, and U-S News Magazine, and two of the cancer researchers are standing in front smoking. That isn't the only picture that haunts my dreams.

A man walking out of another hospital, casual, purposeful, in control. The red stitches on the left side of his shaved head outlining a space as big as a large potato and at least an inch higher than the rest of his skull. I don't know if he was getting better or he was getting worse. I don't know if he had gotten good news or bad. I don't know if tonight he's healthy, or he's dead.

Months ago I got in a line at a drug store here. A woman ahead of me, obviously a familiar figure to the young pharmacist behind the counter, trying with mixed success to take in the gentle explanation. "You've maxed out your prescriptions on that insurance," the professional said slowly, "I can't give it to you." The customer shook her head in resignation.

It was like the Medieval Courts of Chancery, where if you were poor, you could take your lawsuit against the rich or the government, and hope when they picked the handful of cases to be heard, they'd somehow pick yours. If they didn't, you could try again next year, or, in some cases, every year for twenty next years.

The woman who needed the prescription spoke even more slowly than the pharmacist had. She had almost no hope in her voice. "Try the Cigna. Please." Another drug store, late at night. The pharmacist was a friend of mine. "You have to do something about this," he said as he handed me my refill and then reached for somebody else's prescription. "You see this? Anti-fungal cream. I just filled this. You know what this costs wholesale? Four dollars. You know what I have to sell it for? Two hundred and sixty-three dollars. I sell it for less and I get fired and maybe we lose our license."

And last Saturday, I leave my father, 24 hours after serious surgery that probably saved his life, serious enough that he's still under sedation and it'd be another 24 hours before he knew where he was or who I was, and yet I know he's okay because I've gotten him the best care in the world.

Literally, his surgeon is considered one of the top five guys in his field alive today and even I can tell he absolutely nailed the operation. And I know that after my father wakes up, when post-operative fluids get into his lungs, and he has trouble breathing, and he has to inhale after every word, they have a drug called Lasix that will start to drain the fluids and within five minutes he'll be breathing easier and within fifteen it'll be like nothing was ever wrong and this is just one of twenty drugs they can use on him not just to make him better long-term, but just as importantly and twice as imperatively, to stop his pain short-term.

And I marvel that we have come so far that you can barely take care of your health, like he has for 80 years, you can even be as dumb as those two women outside the cancer research center, smoking away and there is still a kaleidoscope of drugs and therapies and nurses and diagnosticians and psychiatrists and x-ray techs and surgeons, and all of them are capable of undoing the pain and curing the sickness and forestalling death.

And as I walk down the hallway from my Dad's room I allow myself a brief moment of selfishness. I'm sorry. I'm sorry I'm happy that I can spend whatever it takes to help my Dad get better, to keep him around, but maybe I can atone for that selfishness by making this case, tonight, to you, to whoever sees this, that we have to make these wonders of life and health and peace of mind and the control of pain available to everybody. And this is boiling in my brain and I take the shortcut out to the street, through the Emergency Room, and that's when I hear my name called.

And it's a man, roughly my age, and he looks worried to death. And I haven't seen him in 32 years. He was the nephew of the two brothers from Brooklyn who used to run the baseball card shows when we were both kids, and his uncles were the businessmen but he, like me, collected mostly for the fun of it, and it's amazing to see him again, joyous almost, for the sake of the continuity that the accident of us running into each other provides to us both. And he asks what I'm doing there and I tell him and he smiles because my father used to go to those card shows with me and Mike remembers him. And then I ask Mike why he's there.

"My daughter's in ICU," he says. "Three weeks now." The worried look returns to his face. "Lyme Disease. It's one thing, they knock it down, then it's another." There's a brief pause.

"Tomorrow I have to sell my farm. Did you know I had a farm?" I don't have to ask him why he's selling it. He then goes the next step. "Hey, you wanna buy my card collection? I've got some great stuff."

We must reform a system that lets my father get better care than yours does, or better care than Mike's daughter does, because by the accident of life, I make more money than he does, or my checkbook can hold out longer than his does, or yours does, as the bills come endlessly like some evil version of the enchanted water buckets in Fantasia.

The resources exist for your father and mine to get the same treatment to have the same chance and to both not have to lie there worried about whether or not they can afford to live!

Afford to live? Are we at that point? Are we so heartless that we let the rich live and the poor die and everybody in between become wracked with fear — fear not of disease but of Deductibles? Right now, right now, somebody's father is dying because they don't have that dollar to spend. And the means by which the playing field is leveled, and the costs that are just as inflated to me as they are to you are reduced, and the money that I don't have to spend any more on saving my father can go instead to saving your father that's called health care reform!

Death is the issue! How can we not be unified against death? I want my government helping my father to fight death! I want my government to spend taxpayer money to help my father fight to live and I want my government to spend taxpayer money to help your father fight to live! I want it to spend my money first on fighting death. Not on war! Not on banks! Not on high speed rail!

Spend our money, spend my money, first: on the chance to live!

And we must be unanimous in this, not to achieve some political triumph for one side against the other, but to save the man or the woman or the child who will be dead by morning, in this country, in this century, on our watch, because we are not spending that money tonight. I will not settle for a compromise bill and I will extend my hand to those who are scared of the inevitability of death but have been told they are scared of reform, those who have been exploited by the others, paid, or forced, to defend the status quo.

And we must recognize the enemy here: an enemy capable of perverting reform meant for you and me, into its own ATM that mandates only that more of us become the slaves to the insurance companies. The monied interests that have bled their customers white, and used their customers' money to buy the system, to buy the politicians, to buy the press, cannot now even be checked by the government.

Ordinarily the solution would be obvious: we would have to do it for the government. We would have to bring the insurance companies to their knees to organize, to pick a date, to say enough to, at a given hour, on a given day, to stop paying the premiums. An insurance strike.

But the insurance companies' stranglehold on us is so complete that lives would be risked, lives would be lost by the very act of protest. What parent could risk the cancellation of their child's insurance? What adult could risk giving his insurer the chance to claim that everything wrong with him on the day of an Insurance Strike was suddenly a pre-existing condition?

Even as the pay-outs move inexorably downwards, to being less than what you have paid in over the years, we are such serfs to the insurance companies that just to invoke the true spirit of the founding of this nation, is to give them more power, not less.

So I propose tonight one act with two purposes. I propose we, all of us, embrace the selfless individuals at the National Association of Free Clinics. You know them, they conducted the mass health care free clinic in Houston that served 1,500 people. I want a mass health care free clinic every week in the principle cities of the states of the six senators key to defeating a filibuster against health care reform in the Senate.

I want Sens. Lincoln and Pryor to see what health care poverty is really like in Little Rock. I want Sen. Baucus to see it in Butte. I want Sen. Ben Nelson to see it in Lincoln. I want Sen. Landro to see it in Baton Rouge. I want Sen. Reid to see it in Las Vegas.

I'll donate. How much will you donate? We enable thousands of our neighbors to have just a portion of the bounty of good health, and we make a statement to the politicians, forgive me, William Jennings Bryan, "you shall not press down upon the brow of America this crown of insurance, you shall not crucify mankind upon a cross of blue."

We think these events will be firmed up presently. You will be able to link from our website.

Trust me, I'll remind you. Because in one party, in one demographic, in one protest movement, we are all brothers and sisters. We are united in membership in the party that insists that every chance at life be afforded to every American seeking that chance.

We are united in membership in the party that insists on the right of everyone to the startling, transcendent blessings of the technological advance of medical science. We are united in membership in the party that is for life, that is against death, that is for lower premiums, that is against higher deductibles, that is for the peace of mind that can be provided only by the elimination of the fear that cost will decide whether we live or we die!

Because that's the point, isn't it? It is hard enough to recover, to fight past pain and to stave off death, if just for a season or a week or a day. It is so hard, that eventually for you, for me, for this president, for these blue dogs, for these protesters it is so hard to recover, that for all of us there will come a time when we will not recover. So, why are we making it harder?

Life and Death, Part 3

Keith Olbermann's "Special Comment" continues :

Dr. Albert Sabin was by his own description, pretty full of himself when he managed to temporarily stop the testing of the Salk Polio Vaccine after a bad batch sickened and killed some children early in the first tests in the 1950s. Sabin recounted this in a television interview in the '80s. He was weeping. He had believed he was doing right. He had convinced himself that the fact that Salk's vaccine, the so-called "inactivated polio vaccine," had been chosen for use instead of Sabin's own "live polio vaccine," was irrelevant to his efforts.

He was weeping as he recounted this, too. Ultimately there proved nothing wrong with Salk's vaccine, the one batch had been improperly handled and manufactured. But Sabin and others, delayed all further testing for weeks. Sabin was weeping as he remembered. In 1983, Sabin had contracted a rare disease of his own. Surgeons operated, relieved the intense pain and muscle weakness, and then ten days later it came back, ten times worse, enough for him to be yelling and crying, virtually all the time.

The pain, he said, "made me want to die." And Dr. Albert Sabin suddenly remembered that the stopping of the Salk Vaccine experiments had led to death. Death of children. More immediately, it had led to pain, physical and emotional, for the children, and the parents.

He said it had not occurred to him that the first thing doctors must do, the first thing a health care system must do, is stop pain. He vowed to spend the rest of his life relieving pain. His own searing agony, and paralysis, gradually, inexplicably, faded.

They moved my father this afternoon. I don't mean they moved him to another hospital. They moved him. In his bed. Into a different position. It was agony for him. Agony enough that he could barely see us. Agony enough that they had to give him all the pain-killer he could handle. Then he couldn't talk any more. Another moment when somebody like me wonders about what it would be like if he was going through that, and I was watching it, worrying about whether we could afford the pain-killers.

Or the doctors. Or that hospital. Or any treatment at all. And what kind of society we live in, where millions of us face questions like that, and politicians glibly talk about incremental improvements while they slowly re-shape new laws that are supposed to reduce the number of us faced with pain untreated due to money, into laws that take more money out of our pockets and give it to the corporations who are profiting off health care without contributing one second to the relief of pain or the curing of disease, the pimps of the equation, taking their 20 percent off the top the health insurance cartels.

How would our politicians react if there were millions Americans in pain, getting insufficient care to relieve that pain, because of interference from insurance corporations and those millions had just been injured in a natural disaster, or an attack on this country? How fast would they rush their portable podiums to the driveways outside the emergency rooms? How quickly would the money come?

You know the answer. And you know what the answer has been about rushing to help those millions of Americans in pain tonight attacked not by another country or a terrorist or even a flood but attacked merely by life. Half of the politicians are dedicated to protecting the corporations against having to help our relatives and neighbors in pain.

The other half are calculating how far they can anger our Insurance Over-lords before our Insurance Over-lords stop contributing to their campaigns. Might all their CEOs, might all the wavering political frauds, get ten minutes of Dr. Sabin's pain. Or my father's. That's another part of this story I just haven't seen. The doctors.

For all the jokes over all the years, these guys really are on our side in this, especially the ones in the hospitals, especially the ones without whose skills you'd heal up just as fast in a bowling alley as in the best of the medical centers. The man who took my appendix out two years ago, a messy, dangerous job that took more than two hours, from which I recovered fast enough that I only missed four days of work, and who left three little scars one of which I can't find any more, I wrote all the checks. I know how much he got out of the whole price. About ten percent.

A very good friend of mine is a doctor in California. He wrote me the other day. "You can see why doctors, who want to make a living or cover increasing costs, labor, overhead, etc., have only one choice: see more patients, spend less time, answer fewer calls, because there is no other way to increase revenue.

"Plus," he wrote, "if you order tests, patients think they are getting better care (and) doctors thinking that testing, saves them time in thinking or talking with people. 'You have chest pain?' Instead of asking you questions, why don't we go ahead and do this stress test - that I get paid much more than some little office visit to do - and make sure it's not your heart.'"

And so like us the doctors are slaves to insurance. And that's not even talking about malpractice. We have to help them on that. Maybe we do need to cap damages. But do it where everybody benefits. Set the cap wherever it works out to be now, then lower it each year by exactly how much the entire cost of a patient's health care is lowered in this country. Incentivize doctors to help make health care available to everybody.

We patients and the doctors have to be on the same side again to stop pain, to heal disease, not to be customers and salesmen. And to help, thinking long-term. "People do want to discuss their end-of-life preferences prospectively," my friend the doc says, "and doctors should be paid to have these discussions." And then he wrote something that hadn't occurred to me. "We spend a lot of money on doing things that people would not have wanted us... to do to them."

Oh, that hit home. My mother died in the spring. Bless her, she lived without symptoms till nearly two weeks before she went. And we had all talked about what to do, and when to do it, and what not to do. And so when they said there's breast cancer, and there's five lesions in her brain, and there's nothing we can do that will wake her, but we can do a lot to lessen her pain or we can do things that might extend her life but also won't cure her and also won't wake her, but might be hurting her, we can't tell.

It took five seconds to decide. And then I thought of all the people who never had that discussion with their mother or father, who don't know that those are the choices they might face. And how it might help to have a doctor who says, here it all is. And you say: Doc thanks, I've decided I still want you to keep me alive forever even if I'm suffering and comatose, and he says, you got it.

Only now he could send you a bill and you could have insurance pay you back for it, so your mother and you will know, when the time comes, exactly what each choice would bring. And some buffoon decided to call that a "death panel." On the list of preventable deaths diabetes, stroke, ulcers, appendix, pneumonia we are 19th. Canada is 6th, England 16th, we're 19th. Portugal is 18th. You're better off in Portugal.

Death panels? We have them now. They're called WellPoint and Cigna and United Health Care and all the rest. Ask not for whom the insurance company's cash register bell tolls. It tolls for thee. What you and I might able to do about all this, when my Special Comment continues.

To be continued....