THE HISTORY OF MEDICINE, ACCORDING TO ME

Almost four years ago, on September 9, 2003, I was diagnosed with leukemia. On that moment, my life – and the life of my family – changed forever. I realize now that Marcia and I will never be the same. Our journey through the American medical system has taught me a lot – including just how hard you sometimes have to work to survive. And not just survive, but do so with some measure of dignity, a sense of humor and a continued fascination with life and its many secrets.
Wow, it didn’t take very long to wander into the deep end of the pool, did it?

So come over here in the shallow end kids and I’ll try to let you in on a few things you might need to know if you ever get sick. Stuff you won’t learn on the Discovery Channel.

I had to learn pretty quickly – although, I have to admit, I was treated like a celebrity for the first couple of days. I had a private room. Hospital executives came up to ask me if I was being cared for properly. Pretty young nurses answered my calls. The medical tests were non-stop but fairly benign – none of them hurt very much. Even the one that did hurt, a bone marrow biopsy, at least took place in the safety of my room. (It hurt a lot.)

But that was the first couple of days. After that, Dr. M, my first oncologist, threw me into the deep end. It was sink or swim time.

It began Thursday morning when he sent me down into the basement (dungeon?) for some sort of ultrasound test. Still hooked to my IV lines, they put me on a gurney, wheeled me down to the basement and into the test room. The technician was great and the test went well – but then my war with medicine officially began.

Still on the gurney, they wheeled me out of the test room and told me that someone would arrive shortly to take me back to my room. Dressed in a tattered hospital gown that was open in the back, ripped in the front and all greasy from the ultrasound crap they smear on you during the test, I found myself alone in a deserted, fluorescent-lit basement corridor. My cart was lined up against the wall of a hallway with a half-dozen other gurneys that looked abandoned -- like the rusted hulks of so many ’57 Chevys dumped on the side of a Georgia trailer park.

Thirty minutes passed. I felt stupid for waiting so long already. But I was tethered to my IV lines and felt more naked every minute that went by. I tried to explore but every room was locked, including the one where I had my test. No one answered my knock. The only sound was the annoyingly loud buzz of the fluorescent ballasts. It occurred to me that it might have made a good episode of “The Twilight Zone.” Except it was real.

I started to write the lead of a tabloid story about the mysterious discovery of a skinny human skeleton found inside a huge pajama robe in the bowels of a tony East Side hospital.

NEW YORK (AP) -- Police today were trying to determine if the skeleton found in the sub-basement of a posh midtown hospital is the remains of an overweight newspaper editor missing for over 30 years.

"Apparently, they just forgot about him," a source said. "It appears he was taken from his room for a routine test and left in the basement hallway without any way to call for help."

Judging from the size of the robe found with the remains, the patient might have survived for over a year trapped in a hallway without food, police said.

If only I could find a way to fit the word “blonde” or “co-ed” in the lead, it wouldn’t be a bad story, I thought.

But exasperation slowly gave way to panic. I started to sweat. You know the drill: minutes seemed like hours, hours seemed … Finally, someone with an ID tag hanging from her neck walked by. At first, I was sure she was lost too. But she seemed to understand my predicament. She said she would help and she actually had a key that actually opened the door of a nearby office that actually had a telephone. The telephone actually worked. She called some service that allegedly dispatched drones to various parts of the hospital/factory to deliver patients/bodies to where they were supposed to go. It appeared I was to be rescued!

“Someone will be by in a few minutes,” she said. “They get lost. This happens all the time. Don’t worry, I’ll be in here.” Then she disappeared behind the locked door and I was alone in the hallway again.

But after 10 long minutes, some sad sack actually showed up, grunted and pushed me back to my room. Only a little more than an hour had really passed but it might as well have been a week. And no one ever seemed worried that I, a patient, was missing.

The point is, from that point on, everything that happened in the hospital was fucked up in one way or another. It always seems to happen in hospitals. There comes a point when the building tells you that it’s time to get out. If you haven’t been in a hospital, you’ll just have to believe me. If you have ever been admitted, you know that your stay may be like staying at The Ritz and then one moment everything goes sour -- nurses ignore you, food, medicine and doctors don’t show up and (worst of all) your veins decide to go south for the winter. (Laugh it up rookie, but it actually happens and when it happens to you as they’re about to give you a transfusion, you won’t be laughing.

A veteran hospital patient, I knew the moment had arrived for me to go. My senses sharpened and my thoughts raced. In such a state, I came up with certain universal medical truths.
Pay attention kids, here’s the first punch line / lesson / rule of medicine for today …

NEVER ALLOW YOURSELF TO BE VOLUNTARILY ADMITTED TO A HOSPITAL

because (pay attention, there will be a quiz on this later),

A HOSPITAL IS NOT A GOOD PLACE TO GET BETTER.

Or even visit for that matter. Anyway, the next thing that happened was actually good – Marcia showed up. She was so great to see, I remember today what she wore. But she was exhausted from getting up early to cover the phony-baloney political publicity availabilities that were supposed to mark the solemn second anniversary of 9/11. I can’t remember if the president was in town but she had to leave home at 5 a.m. to be in a location that she wouldn’t be able to leave until after the afternoon broadcast was finished. She was a ray of sunshine, a breath of fresh air and a break in the clouds but she was so beat I was worried about her and I told her to go home and get some sleep. Heaven knows she wouldn’t get any rest once I was sent home.

A half an hour after she left, Dr. M arrived. In just a few minutes, it all crashed in on me once again. Dr. M had a bedside manner like a vulture and he wasted no time getting into it. “The test results arAe back and they confirm the diagnosis. You have b-cell chronic lymphocytic leukemia.”

After two days the very word “leukemia” didn’t hurt as much as it did in the emergency room, but Dr. M wasn’t done. For the next 10 minutes he described that the condition that sent me there in the first place wasn’t leukemia but the better-sounding anemia -- a lack of red blood cells. (Those of you of a certain age will remember the ads for Geritol, a completely useless OTC medicine that was sold as a cure for anemia during the age of black and white TV.)

My anemia was caused because the red blood cells were being destroyed by mutant antibody-crazed white blood cells. Or something like that.

Then Dr. M told me his course of treatment. Out spewed the names of strange chemicals – each followed by a litany of possible reactions and side effects. “You’ll probably have an allergic reaction to this, but only the first time. So when you come back Monday, bring someone to drive you home,” he said. “After that you can drive yourself.”

Then, after the anemia is under control, we’ll talk about treating the leukemia, he said. “Okay?”

My head was spinning. I tried to ask questions but Dr. M wanted to go home and I was in totally unfamiliar territory. This was the moment that I always relied on Marcia for. Man, could she ask questions and get answers. Nobody – nobody – was better than her at that. I tried to think – but all I could think of was getting out of the hospital and away from all this.

He said I could leave tomorrow if my blood levels were better. I clung to that promise like a life preserver as he got up and left without my answer. I was alone. My mind shifted into overdrive again. The thought of all those mutant blood cells spreading cancer throughout my body terrified me. It hit me all at once -- it was going to be tough to wiggle out of this one, Marc. This was the real shit.

I couldn’t sleep. I kept going over the situation. Then, suddenly, as the sun came up over the East River, I figured it out. Almost at that moment, before the sun reached my 17^th floor window, the phone rang. Marcia was awake.

She could immediately tell I was freaked out. I tried to tell her about Dr. M’s visit but I couldn’t help but tell her my brainstorm and have her beautiful -- and capable – hands bring it to life.

“You gotta get me another doctor,” I sobbed. “Dr. M scares me to death. Ya gotta get me someone else and get me outta here.” She calmed me a little and then listened to what I remembered of Dr. M’s cure. It was pretty accurate because like a good reporter I took notes.

I’m still not sure what Marcia did after that. I still really don’t know how she produced the miracle that next took place. I do know that phone calls were made and favors called in. I also know that at 9 a.m., Dr. A, the hospital’s head of hematology and something of a legendary figure there, arrived at my room looking a little like a man called back from vacation by the President and said: “I’ve been told I’m supposed to examine you and take you on as a patient.”

He looked at my charts, and then he looked at me. Then he told me he would be he would be back at five in the afternoon and then I could go home.

When he came back I was prepared – Marcia was there. Basically, he confirmed the diagnosis and laid out his own plan of action – a series of treatments and drugs that was totally different than what Dr. M wanted to do. When he was told what Dr. M proposed, he said something like he thought that was “totally inappropriate.”

Then the conversation went around in circles for a few minutes before I shut it down and laid out MY OWN plan of action. The only logical thing, I said, was to get another opinion. I would try to get an appointment with The Wizard. I left the hospital feeling better. Not only did I have three units of blood transfused into me, but I had a plan. Somehow, I would see The Wizard.

The Wizard is actually Dr. R. If you Google “CLL,” his name comes up all the time. The staging system used to measure the poor schmucks with CLL is named for him. Everyone we know made phone calls to get an appointment but I got one by just calling his office and asking for one.

His secretary said: “Sure. He can see you November 17^th.”

“You do realize he’s a cancer doctor,” I said. Told that she had been so informed, I continued: “Then you can tell Dr. R he can examine my body at the morgue.”

“What did you say your name was?”

Uh oh. I told her my name and she put me on hold.

A few days later I was on my way to Oz. I’ll write more about The Wizard later – the little guy is good for a few stories, believe me. But for our purposes now, all you have to know is that he proposed his own course of treatment. The thing is … it had very, very, little in common with the first two menus already on my plate.

I’m used to this medical bullshit now. But I was a newbie then and it gave me a lot to think about. I came to two new rules of medicine:

MOST MEDICINE IS AN ART, NOT A SCIENCE

and, more importantly,

ALWAYS GET A SECOND OPINION.

Believe me; this last rule has become so important – and so tough to pull off. You have to be part psychiatrist and avoid pissing off your first – or second, or third – doctor. Because, (here’s another rule kids):

THEY TEACH PATIENTS TO GET SECOND OPINIONS BUT THEY NEVER TEACH DOCTORS TO DROP THEIR BIG, FAT EGOS AND ACCEPT THEM.

Don’t get me wrong, doctors today are, as a rule, not overpaid and do not exactly live a life of ease. Most are dedicated healers and I’ve been very lucky and found a good batch. But it’s hard in any occupation to be told you’re wrong. Especially in medicine, where you’re accustomed to be treated like a minor god.

But there are two major secrets of the profession that every doctor relies on:

WITH THE EXCEPTION OF SERIOUS WOUNDS AND BROKEN BONES, THE BODY WILL TAKE CARE ABOUT 95 PERCENT OF AILMENTS BY ITSELF WITHOUT HELP

and …

MOST OF THE TIME, THERE’S NO RIGHT OR WRONG DECISION IN MEDICINE.

You, as a patient, have to remember the latter because you have to make all the decisions affecting your body. Never give up that right. You have to manage your disease. And manage it closely because no one else will.

I hope that as my story develops, I’ll be able to explain these rules more fully and let you in on more of them. Keep your eye on these pages.

In case you’re wondering how this story turned out – I decided to take the one drug that all three doctors agreed on. After the transfusion of two more units of blood, we figured out that it didn’t work. Three months later, Dr. A and I finally decided on the right combination of drugs to get my red blood cell levels back to normal. Or, my body just healed itself.

I’m betting on my body.

Then, we all tackled what to do about my life-threatening cancer. The answer was obvious – nothing.

I’ll explain later.

CAPTAIN'S MEDICAL LOG / addendum

Stardate: 1/060707 ... I finished. I'm done!

Yesterday, the last 180 mg of a total of 2,160 mg of Rituxan, was pumped into my bloodstream at NYU Medical Center on 34th Street. Except for some saline solution, acetaminophen and Benadryl, I can't think of anything else that was in the mix that could make me feel as great as I feel today. The photo above shows me celebrating with two good friends.

I feel confident enough to schedule vacations well into the century. Moe mentioned that he would like to see Sombrero Beach in Marathon. Norma, think "pet-friendly." As for me, I don't understand how Moe knew how to spell Sombrero. He didn't even have to check with Curly. Everyone knows Curly is very good at spelling.

Dana and Sean: The pizza was great! Thanks a billion! Moe, who's terrible at geography but loved the pizza, wants to know if it's possible to drive to Hawaii. He hates to fly.

Incidentally, I've been talking to my dogs for a few years now. It never worried me until they started talking back.

LIVESTRONG!

CAPTAIN’S MEDICAL LOG:

Stardate 1/052307 ... It’s been over a month since our last posting – but the time hasn’t gone to waste. Without ever being admitted, I’ve spent more time in the hospital so far this spring than most doctors. I’ve decided that my journey through the American health-care system has been so Kafkaesque that maybe I can do some good by documenting it somewhere – and I believe the Web is now the best and most immediate place to publish anything. There’s some hope that once it’s online, it will always be there, somewhere. If we’re careful, the Web will be the single greatest tool ever created for the spread of freedom, democracy and truth throughout the planet.

But back here on Earth, my recent reality has been fueled by infusions and pills. Just managing all the drugs that I take – making sure I don’t run out of any, gathering the proper prescriptions and simply sorting them out three times a day – is a full-time job. I carry around single-spaced print outs of the latest list of drugs I take daily just in case a nurse, doctor, druggist or ambulance attendant might ask if I take any drugs. It’s come in handy on more than one occasion.

And back here on Earth, I’m exactly half-way through a series of infusions of mega-doses of Rituxan. Since Rituxan is a monoclonal antibody I’m not getting chemotherapy but they are pumping into me doses of 800 mg/l three times a week for four weeks. Each infusion lasts about four hours. I won’t bore you with details of how Rituxan works (although it is fascinating) or how expensive it is (although at 50 large/dose it is scary) or what the usual dosage is (although at 350/week it is much less) -- but all this is easily available with a Google search.

The present story began just before the New Year with a simple case of diarrhea that just wouldn’t go away. I’ve got three active doctors and none was very interested in my bowel movements. Even a persistent sinus infection failed to peak their interest. They were all fascinated however with the swelling in my legs. My skin there was so dry it cracked and wept the fluid that my lymphatic system was no longer dealing with. I got the problem in my right leg under control but my left leg refused to respond to treatment and wept so much that my sock and shoe were soaked through after a few hours. It was a pain in the ass but I could deal with it with gauze and ace bandages. It was the pain in my ass that bothered me. Finally, on April 10, I convinced my oncologist to take a stool sample, a test that was actually first recommended by Dr. Kramer, who happens to be my wife and an uncanny diagnostician. (She’s good looking too.) I won’t describe here the actual procedures suggested and used to collect this sample because I’m saving that for the plot of a 22-minute situation comedy one day.

Stardate 2/060507 ... My last dose of Rituxan is tomorrow. I’m so full of it that it’s about to come out of my ears. My leg is weeping again but I feel real good and optimistic about the future. Back to our story …

The results of the stool sample came back a week later and revealed that I had a staph infection. Dr. K, my steadfast endocrinologist, exclaimed “That explains everything!” but Dr. A, my oncologist and the Wizard, the world’s foremost authority on my kind of leukemia, were less impressed. Dr. A wanted to start immediate full-blown chemo – something I didn’t want to do – and the Wizard actually said I was too sick for chemo and should have radiation before a dose of it. But a radiation oncologist at NYU refused to participate in it because he didn’t think I was sick enough.

That sent Dr. A and I back to the drawing board and the good doctor, knowing how I felt about chemo, brought up a suggestion I had made a few weeks earlier -- a regimen of Rituxan alone. The Wizard concurred. So here I am. An Independence Day Cat-scan will determine if we guessed right. (Incidentally, a 10-day course of antibiotics cured the nasty staphylococcus aureus bacteria and almost everything that was bothering me.)

I feel pretty good except for incredible fatigue and achy joints. A nurse who has had patients who have gone through mega-dose Rituxan told me last week that those symptoms were exactly what other patients experienced. That news actually made me feel better.

I think I’ll celebrate the end of this round of infusions by having pizza for dinner tomorrow. Not any pizza but a pie from Brickoven Pizza in Kauai, Hawaii, producers of what’s maybe the best pizza in the world. No kidding. It arrived today from cousins Dana and Sean. It’s arrival is one of the nicest things to happen to Marcia and I in a long time. Guys, just the thought of what you did makes my day. It’s what family is all about. I’m proud I’m part of yours. Thanx.