On the day of his admission, the boy's parents drove him an hour up Route 95 to Baltimore and its depressed inner city of red brick public housing developments. Johns Hopkins Hospital in 1981 was a warren of long, windowless, flourescently lit hallways with rust-colored carpets and walls. Rushing crowds of doctors, administrators, patients, and families filled them, each intent on their separate destination.
After check-in, his parents took him to the 8th floor of the pediatrics building which had rows of rooms on either side of a nurses' station. In the boys memory, it would later seem as if everything in ward--the walls, the floors, even the lights--were pale shade of green in never-ending nighttime.
The first step of the process was staging. They knew the nature of the tumor. They did not know its extent. Had it spread to local lymph nodes and to other organs? To the bone marrow? That would determine the boy's chances of survival and his treatment.
Over days, the boy had scans and blood tests. The only tests he would remember years later was the spinal tap the bone marrow biopsy. Paul did them. Both of them were done to his back, where he could not see, and with him curled up on his side like a fetus.
The initial spinal tap was to look for any sign that the tumor had broken the barrier that separated the brain and spinal cord from the rest of the body. The idea of a spinal tap is more painful than it's execution. The spinal cord is bathed in cerebro-spinal fluid contained in the thecal sack. Low in the back, the spinal cord dwindles to a horsetail of separated nerve roots and a tether that anchors it to the base of the spine. There, where there is no longer a risk of impaling the cord itself, a needle can be slipped between the bones of the spine to puncture the thecal sack and draw out a few drops of the fluid. Even with his limited knowledge of anatomy and with Paul's gentle touch the boy quailed at the idea of a needle in such a place, but it was relatively painless as it would be the dozens of times it would be repeated over the next two years to inject chemotherapy.
The bone marrow biopsy is conceptually simpler. The marrow that fills most of the bones of the body is another critical area where cancer may spread. The hip bone is relatively thin and close to the surface. The needle and syringe for the procedure are enormous. When Paul inserted the needle and pulled, the boy felt the horrible suction in his bone, but luckily, his memory was dulled by sedation.
The cerebrospinal fluid and the marrow showed no tumor cells. The only new finding was suspicious mass in the boy's left shoulder
Monday, July 23, 2012
Monday, July 16, 2012
HBO Series Pulled
Friday, July 13th was the first day of the rest of my life.
Of course, that's true every day, but the difference is that I won't be spending any more mornings isolated in a pressurized acrylic tube urinating in my glasses case, or desperately trying to get Nurse Annamarie's* attention to turn the DVD on, because if I have to watch Nate for more than a few minutes again, I'll claw my eyes out. (Why was I urinating in my glasses case? Because the case where I put my glasses was, in fact, a urinal. When I slept, I usually put my glasses in the sterile and unused urinal they always sent in with me, to keep them safe. But I did take my glasses out of it before urinating.)
I almost had a nervous breakdown three days ago when one of the HBO docs suggested that I consult my ENT specialist about having more HBO treatments. So I guess there remains a theoretical possibility that someone might suggest I do even more HBO. I don't know if I would accept that advice, though. I was beginning to get mighty sick of that tube.
Meanwhile, for at least the next week or two, I will continue to snarf antibiotics every morning and night. Still a time suck, but less so. Let's just all hope I don't breed some new strain of superbacteria that will crawl out of my nose and destroy the world.
*Hi, Annamarie!
Of course, that's true every day, but the difference is that I won't be spending any more mornings isolated in a pressurized acrylic tube urinating in my glasses case, or desperately trying to get Nurse Annamarie's* attention to turn the DVD on, because if I have to watch Nate for more than a few minutes again, I'll claw my eyes out. (Why was I urinating in my glasses case? Because the case where I put my glasses was, in fact, a urinal. When I slept, I usually put my glasses in the sterile and unused urinal they always sent in with me, to keep them safe. But I did take my glasses out of it before urinating.)
I almost had a nervous breakdown three days ago when one of the HBO docs suggested that I consult my ENT specialist about having more HBO treatments. So I guess there remains a theoretical possibility that someone might suggest I do even more HBO. I don't know if I would accept that advice, though. I was beginning to get mighty sick of that tube.
Meanwhile, for at least the next week or two, I will continue to snarf antibiotics every morning and night. Still a time suck, but less so. Let's just all hope I don't breed some new strain of superbacteria that will crawl out of my nose and destroy the world.
*Hi, Annamarie!
Monday, July 2, 2012
Childhood Flashback 3. Realizing
"Do you want to tell him, or would you like me to?"
"Oh, please, you tell him for us."
The boy's parents entered his hospital room followed by a stranger. His hair was strawberry blonde. His mustache was bushy.
"I'm Dr. Peebles, but you can call me Paul. I'm going to be your doctor. . ."
Paul spoke, and his lips moved. The stump of Paul's right ring finger waved as the hand gestured back and forth, up and down. The tone of his voice was serious, but he smiled reassuringly. He touched the boy's shoulder.
". . .operation. . .two steps forward, one step back. . . a long, hard road, but we can get through this. Now, do you have any questions?"
"Yes. What happened to your finger?"
"Mom, why do I need another operation?"
She focused ahead, shifting gears. "You have cancer. They need to make sure they got all of it. Paul told you. Don't you remember?"
"No, he didn't! He said I had a tumor," said the boy.
"No, Sweetie. He said you have cancer."
His eyes stung as they emerged into the harsh autumn light.
She came in and lay down on the boy's blanket with him. And they wept.
The father entered and sat next to them. He made an unfamiliar keening sound that was almost mocking. But then, his eyes clenched, and tears fell. The father sobbed.
"Oh, please, you tell him for us."
* * *
The boy's parents entered his hospital room followed by a stranger. His hair was strawberry blonde. His mustache was bushy.
"I'm Dr. Peebles, but you can call me Paul. I'm going to be your doctor. . ."
Paul spoke, and his lips moved. The stump of Paul's right ring finger waved as the hand gestured back and forth, up and down. The tone of his voice was serious, but he smiled reassuringly. He touched the boy's shoulder.
". . .operation. . .two steps forward, one step back. . . a long, hard road, but we can get through this. Now, do you have any questions?"
"Yes. What happened to your finger?"
* * *
The ramp spiraled up through the hospital's underground parking lot. A faded red VW station wagon sputtered as it climbed."Mom, why do I need another operation?"
She focused ahead, shifting gears. "You have cancer. They need to make sure they got all of it. Paul told you. Don't you remember?"
"No, he didn't! He said I had a tumor," said the boy.
"No, Sweetie. He said you have cancer."
His eyes stung as they emerged into the harsh autumn light.
* * *
She came in and lay down on the boy's blanket with him. And they wept.
The father entered and sat next to them. He made an unfamiliar keening sound that was almost mocking. But then, his eyes clenched, and tears fell. The father sobbed.
Thursday, June 28, 2012
The HBO Miniseries Continues
It has been a while since I have written in the present tense and updated readers on what's going on today. A long slog of daily hyperbaric treatments just does not inspire in the same way as strokes and false alarms of clivus cancer do.
Here's what's up:
1. First, the surgeons have come to consensus. Dr. Treebeard, Famous ENT, agrees with everyone else that surgery is not a good idea in the absence of a doomsday head infection, which I do not have. You may recall that he had been discussing possible surgery for late this month. It is not as though things have changed that much, so why is he singing a new tune?
Reading him charitably (which I should), last time I saw him, he was responding to me. I was terrified after a small stroke and with an infection, and I had an open bone next to my brain that I wanted covered right away. He did not say that surgery was inevitable. He just said that he could do surgery if conservative treatments (meaning hyperbaric oxygen and nasal antibiotics) do not work. I wanted surgery, because I was afraid of what would happen without it. In any case. . .
2. Second, the HBO, the antibiotics, or the combo, is working. My formerly-naked clivus has become far more modest. After less than three out of six weeks of treatment, the area was mostly covered. Through the pharyngoscope, the area that had been bare bone has now taken on the appearance of Kobe beef. The red granulation tissue (or scar) is growing over healthy bone with no sign of infection. Hygeia, the Greco-Roman goddess of Otolaryngology, has promised that the next time she looks at it, she'll take a picture I can hang on my fridge.
3. I have nine more hyperbaric treatments to go followed by one more week of nasal antibiotics. Thus, the crisis that began with everyone thinking I was in for the battle of my life will resolve with the healing of a deep wound I didn't even know was there.
Here's what's up:
1. First, the surgeons have come to consensus. Dr. Treebeard, Famous ENT, agrees with everyone else that surgery is not a good idea in the absence of a doomsday head infection, which I do not have. You may recall that he had been discussing possible surgery for late this month. It is not as though things have changed that much, so why is he singing a new tune?
Reading him charitably (which I should), last time I saw him, he was responding to me. I was terrified after a small stroke and with an infection, and I had an open bone next to my brain that I wanted covered right away. He did not say that surgery was inevitable. He just said that he could do surgery if conservative treatments (meaning hyperbaric oxygen and nasal antibiotics) do not work. I wanted surgery, because I was afraid of what would happen without it. In any case. . .
2. Second, the HBO, the antibiotics, or the combo, is working. My formerly-naked clivus has become far more modest. After less than three out of six weeks of treatment, the area was mostly covered. Through the pharyngoscope, the area that had been bare bone has now taken on the appearance of Kobe beef. The red granulation tissue (or scar) is growing over healthy bone with no sign of infection. Hygeia, the Greco-Roman goddess of Otolaryngology, has promised that the next time she looks at it, she'll take a picture I can hang on my fridge.
3. I have nine more hyperbaric treatments to go followed by one more week of nasal antibiotics. Thus, the crisis that began with everyone thinking I was in for the battle of my life will resolve with the healing of a deep wound I didn't even know was there.
Tuesday, June 19, 2012
Childhood Flashback 2. The Catch
The long, sleek, black pharyngoscope lay coiled in gray foam inside a steel shell case. "I'm going to numb your nose with a spray and put this tube into your nostril so I can see what's there," said Dr. Feldman to the boy. "It shouldn't hurt, but tell me if it does, and I'll spray some more. It will definitely feel strange." And it did.
Then, he saw the thing, the mass, the tumor. He saw its underside when he put the dental mirror in the boy's throat. It was an ugly, irregular, scabby, crusted thing that had no right to be in a child's face. Dr. Feldman's heart beat quickly with horror and pride.
Later, they sat in his office. "I see a mass in the nasopharynx. (Tom, that's the area behind your nose.) It's blocking the right inner ear and causing the earache. It's also blocking the right nostril." The boy smiled nervously, the parents, ashen.
That very afternoon, the boy lay down in on a stretcher that pulled him through the great ring of hardware spinning behind glass and plastic--the CAT scanner--a new and miraculous invention. His father informed him that the CAT scanner's development was partly funded by investment from Capital Records, the company that had produced the early Beatles in America. Later, his friends asked if there was a thank-you to the Beatles on it. There was not.
The tumor glowed in the pictures, a crab confined behind his face. The parents' dread weighed in their throats. Afterwards, inexplicably, they took him to a horror movie--An American Werewolf in London. Twenty-five years later, when the boy saw a poster for the sequel, he felt as if someone had walked on his grave.
What sort of mass was it? Was it the kind that bled uncontrollably when cut? That had to be known first.
So the boy learned what an angiogram was. A few days later, he lay very still as the tube was inserted into an artery in his right groin and threaded all the way to his face. Then he felt the burning of the contrast dye as the doctors took x-rays. He would remember it as the most painful, frightening procedure of his life--the cut in that terrible place, the pain of the dye, the imperative stillness. But they discovered that the mass was not a bleeder.
Then came the pediatric hospital of plate glass windows and carpets and walls of deep blue. As the resident closed the boy's surgical wound, Dr. Feldman stepped out. The parents and the father's mother stood up. "Tom, Carol, can you come with me to the Family Room?"
The grandmother's fury erupted when they returned and told her what he had told them. Before her jabbing finger, the tall, broad-shouldered surgeon folded on himself. "How DARE you leave me out of that room! How DARE you tell them first that MY GRANDSON HAS CANCER!"
Then, he saw the thing, the mass, the tumor. He saw its underside when he put the dental mirror in the boy's throat. It was an ugly, irregular, scabby, crusted thing that had no right to be in a child's face. Dr. Feldman's heart beat quickly with horror and pride.
Later, they sat in his office. "I see a mass in the nasopharynx. (Tom, that's the area behind your nose.) It's blocking the right inner ear and causing the earache. It's also blocking the right nostril." The boy smiled nervously, the parents, ashen.
That very afternoon, the boy lay down in on a stretcher that pulled him through the great ring of hardware spinning behind glass and plastic--the CAT scanner--a new and miraculous invention. His father informed him that the CAT scanner's development was partly funded by investment from Capital Records, the company that had produced the early Beatles in America. Later, his friends asked if there was a thank-you to the Beatles on it. There was not.
The tumor glowed in the pictures, a crab confined behind his face. The parents' dread weighed in their throats. Afterwards, inexplicably, they took him to a horror movie--An American Werewolf in London. Twenty-five years later, when the boy saw a poster for the sequel, he felt as if someone had walked on his grave.
What sort of mass was it? Was it the kind that bled uncontrollably when cut? That had to be known first.
So the boy learned what an angiogram was. A few days later, he lay very still as the tube was inserted into an artery in his right groin and threaded all the way to his face. Then he felt the burning of the contrast dye as the doctors took x-rays. He would remember it as the most painful, frightening procedure of his life--the cut in that terrible place, the pain of the dye, the imperative stillness. But they discovered that the mass was not a bleeder.
Then came the pediatric hospital of plate glass windows and carpets and walls of deep blue. As the resident closed the boy's surgical wound, Dr. Feldman stepped out. The parents and the father's mother stood up. "Tom, Carol, can you come with me to the Family Room?"
The grandmother's fury erupted when they returned and told her what he had told them. Before her jabbing finger, the tall, broad-shouldered surgeon folded on himself. "How DARE you leave me out of that room! How DARE you tell them first that MY GRANDSON HAS CANCER!"
Saturday, June 16, 2012
Childhood Flashback 1. The Earache
Someone might have found it earlier. Might have prevented a lot of grief. One year before, he was playing 'maul ball,' where the object of the game is to tackle whomever has the ball. The concussion sent him to the emergency room and got him the skull x-ray. There it had been, waiting for a brilliant catch by some genius radiologist who never was.
But one year later, it demanded attention. On a hot summer night, the boy and his friend put on a play for the parents. After the boy slept under an air conditioner's frigid wind that night, the morning's earache seemed natural.
But the earache did not go away. It bored into his head. It grew worse over weeks and months. Soon, the right side of his nose could not breathe. It bled. Infection? Allergy? Try this pill. Or that. This pill did nothing. That pill caused a rash. Neither made it better.
Running laps, breathing hard, the boy felt something flopping in and out of his throat. The awkward young history teacher saw him falter. The teacher had probably been compelled to coach 6th grade football. His voice cracked as he yelled at the boy to try harder.
The parents were not long out of medical training. They could imagine. The dread grew. What is wrong with the boy? The only. The one child.
But one year later, it demanded attention. On a hot summer night, the boy and his friend put on a play for the parents. After the boy slept under an air conditioner's frigid wind that night, the morning's earache seemed natural.
But the earache did not go away. It bored into his head. It grew worse over weeks and months. Soon, the right side of his nose could not breathe. It bled. Infection? Allergy? Try this pill. Or that. This pill did nothing. That pill caused a rash. Neither made it better.
Running laps, breathing hard, the boy felt something flopping in and out of his throat. The awkward young history teacher saw him falter. The teacher had probably been compelled to coach 6th grade football. His voice cracked as he yelled at the boy to try harder.
The parents were not long out of medical training. They could imagine. The dread grew. What is wrong with the boy? The only. The one child.
Saturday, June 9, 2012
Childhood Flashback: Saving the Girl
The lawn was like a tightly woven carpet around the palm trees. Joseph's black skin shone in the sun as he stood next to flowering bushes, sheers in hand. The pale boy's head was bald and shone as well.
He was thin and wore an Izod shirt and plaid shorts.
The boy lingered as his parents walked on with the porter to their cottage. "Hi, I'm Tom. What's your name. . ."
And as they talked, Joseph came to ask, and the boy told. The reason he was bald was that he had cancer. The treatment made all of his hair fall out. But he was going to LIVE.
"But I know a girl in town. She has breast cancer. She is only 14--just three years older than you. The doctors said they could not help her. She is waiting to die."
"But they must be wrong! They can cure cancer!"
"It is too expensive to go to America, so she stays here."
"No! This is wrong. I have to talk to her. There must be money somewhere for cases like hers. It's stupid that she should die."
* * *
The next day, they passed through the clean white gates and down the dirt road of houses surrounded by walls topped in shattered glass. A short walk farther were the concrete buildings of the harbor, gray with dust and with corrugated aluminum roofs.
Through a gate was a small dirt yard with a naked toddler and a sad mother. She smiled at the visitors. "Please, come in. Joseph told us about you."
The inside of the house was small and dim and cooled by the smooth concrete floor. The thin, shy girl sat on the tattered couch. Her hair was cornrowed.
The boy launched into his sermon of hope. When he was done, the mother smiled and sighed. "We took her to Miami. The hospital had a free program. She saw the best doctors, but she has a bad cancer. They did their best, but there is no more they can do. She is home now, so she can be with us."
"Oh. . . Oh. I'm sorry. I'm sorry."
Joseph took the boy back up the road and through the white gates to the manicured lawns and flowering bushes and palm trees and a beach of pink sand with warm, gentle waves.
He was thin and wore an Izod shirt and plaid shorts.
The boy lingered as his parents walked on with the porter to their cottage. "Hi, I'm Tom. What's your name. . ."
And as they talked, Joseph came to ask, and the boy told. The reason he was bald was that he had cancer. The treatment made all of his hair fall out. But he was going to LIVE.
"But I know a girl in town. She has breast cancer. She is only 14--just three years older than you. The doctors said they could not help her. She is waiting to die."
"But they must be wrong! They can cure cancer!"
"It is too expensive to go to America, so she stays here."
"No! This is wrong. I have to talk to her. There must be money somewhere for cases like hers. It's stupid that she should die."
* * *
The next day, they passed through the clean white gates and down the dirt road of houses surrounded by walls topped in shattered glass. A short walk farther were the concrete buildings of the harbor, gray with dust and with corrugated aluminum roofs.
Through a gate was a small dirt yard with a naked toddler and a sad mother. She smiled at the visitors. "Please, come in. Joseph told us about you."
The inside of the house was small and dim and cooled by the smooth concrete floor. The thin, shy girl sat on the tattered couch. Her hair was cornrowed.
The boy launched into his sermon of hope. When he was done, the mother smiled and sighed. "We took her to Miami. The hospital had a free program. She saw the best doctors, but she has a bad cancer. They did their best, but there is no more they can do. She is home now, so she can be with us."
"Oh. . . Oh. I'm sorry. I'm sorry."
Joseph took the boy back up the road and through the white gates to the manicured lawns and flowering bushes and palm trees and a beach of pink sand with warm, gentle waves.
Sunday, June 3, 2012
The Down Low on HBO
My kindergarten* best friend B asked me to explain to him in more detail what HBO was like. I wrote him several messages. Then, I realized I had a Tumoriffic update in the making.
My verdict on HBO? It could be worse. It is--if I think about it when it's happening.
It takes place, as I have described before, in a sealed, horizontal, clear acrylic cylinder. Lengthwise, I can just touch either end of the tube with my arms stretched up and my toes pointed. Width/height, I can sit at a 45 degree angle. Much more, and I would bump my head. However, the acrylic is clearer than glass, and, especially if there is a good movie on, I mostly don't notice.
I lie on a stretcher, which is annoying, because the mattress is plastic, and even through the sheet, it makes me sweaty. At the same time, I am often a little cold. They have increased the blankets I take in with me, though, and that helps. On my wrist, I have a bracelet that is wired to the chamber to prevent static buildup. If I wish, they will also send me in with a water bottle and, for urgent situations, a urinal. They do not have a stoolinal for the truly bad situations, which makes the plastic mattress worth the annoyance.
Because of the risk of fire, I must not bring anything in with me except my glasses, but including my clothing. I wear nothing but a johnny. I have to insist on getting a long one, or my butt hangs out.
Everything else is forbidden. My iPod or a book could light the 100% oxygen on fire, as could deodorant, hair gel, skin creams, earrings, nose rings, nipple rings, and mustache wax. I'm not kidding about that. There is a sign that lists all of these and more in the dressing room. I can imagine how each was discovered. For instance, at some point, some Salvador Dali look-alike got into an HBO chamber and spontaneously combusted. Or maybe that's how Dali died. I'm too lazy to look it up.
The stretcher is not great for sleep, but I can watch movies on a TV that is attached to rails on the outside of my chamber. I bring my own movie or watch one of theirs. They have a limited selection. I'm on episode 4 of my own copy of 'I, Claudius' right now. I suppose I should be a responsible doctor and watch continuing medical education videos, and maybe I will watch a few. Despite the potential for HBO puns, I don't think I will watch A Game of Thrones there. The every-other-scene nudity would be a bit awkward with the nurse sitting two feet away on the other side of the acrylic shell.
I do not get to use the remote. If I want the volume changed, or anything else, I have to wave frantically at the nurse. She can speak to me on an intercom with a speaker and microphone in the chamber. Incidentally, other than the TV and the intercom, the sound isolation is practically complete.
I am a little tired afterwards, but they say that gets better.
Frankly, I like most people, would gladly pay my lunch money just to be in an acrylic tube for 2+ hours watching movies every day, but the kicker is that I don't get to wear my bling. No, actually, that's not true. Aside from my wedding ring, I have no jewelry. I gave up the tiara last year. I find the nearly four hour time suck of driving there, waiting for preparation, being inside (a.k.a. diving), waiting to be cleared to leave, and driving to my next destination to be highly inconvenient.
I can imagine what my dear friend G** would say, so I will preclude her objection. It could be a lot worse. It's not hemodialysis after all, and, unlike hemodialysis, it will end in five more weeks. Best take it philosophically as yet another tourist ride into chronic illness where I get to return to something resembling home afterwards. Then, I will be able to tell my patients what it will be like for them--this is the value of involuntary experiential internal medicine.
* We were best friends in kindergarten. He is no longer a kindergartener. That would be weird no matter how you read it.
B is the only one of my close friends my own age who can give me a run for my money in medical adventures. He is currently recovering from a cardiac valve replacement, the latest of his many heart surgeries. (He's all heart, I'm all head.)
** G is not exactly my age, but can go toe-to-toe with me any day on premature health nightmares.
My verdict on HBO? It could be worse. It is--if I think about it when it's happening.
It takes place, as I have described before, in a sealed, horizontal, clear acrylic cylinder. Lengthwise, I can just touch either end of the tube with my arms stretched up and my toes pointed. Width/height, I can sit at a 45 degree angle. Much more, and I would bump my head. However, the acrylic is clearer than glass, and, especially if there is a good movie on, I mostly don't notice.
I lie on a stretcher, which is annoying, because the mattress is plastic, and even through the sheet, it makes me sweaty. At the same time, I am often a little cold. They have increased the blankets I take in with me, though, and that helps. On my wrist, I have a bracelet that is wired to the chamber to prevent static buildup. If I wish, they will also send me in with a water bottle and, for urgent situations, a urinal. They do not have a stoolinal for the truly bad situations, which makes the plastic mattress worth the annoyance.
Because of the risk of fire, I must not bring anything in with me except my glasses, but including my clothing. I wear nothing but a johnny. I have to insist on getting a long one, or my butt hangs out.
Everything else is forbidden. My iPod or a book could light the 100% oxygen on fire, as could deodorant, hair gel, skin creams, earrings, nose rings, nipple rings, and mustache wax. I'm not kidding about that. There is a sign that lists all of these and more in the dressing room. I can imagine how each was discovered. For instance, at some point, some Salvador Dali look-alike got into an HBO chamber and spontaneously combusted. Or maybe that's how Dali died. I'm too lazy to look it up.
The stretcher is not great for sleep, but I can watch movies on a TV that is attached to rails on the outside of my chamber. I bring my own movie or watch one of theirs. They have a limited selection. I'm on episode 4 of my own copy of 'I, Claudius' right now. I suppose I should be a responsible doctor and watch continuing medical education videos, and maybe I will watch a few. Despite the potential for HBO puns, I don't think I will watch A Game of Thrones there. The every-other-scene nudity would be a bit awkward with the nurse sitting two feet away on the other side of the acrylic shell.
I do not get to use the remote. If I want the volume changed, or anything else, I have to wave frantically at the nurse. She can speak to me on an intercom with a speaker and microphone in the chamber. Incidentally, other than the TV and the intercom, the sound isolation is practically complete.
I am a little tired afterwards, but they say that gets better.
Frankly, I like most people, would gladly pay my lunch money just to be in an acrylic tube for 2+ hours watching movies every day, but the kicker is that I don't get to wear my bling. No, actually, that's not true. Aside from my wedding ring, I have no jewelry. I gave up the tiara last year. I find the nearly four hour time suck of driving there, waiting for preparation, being inside (a.k.a. diving), waiting to be cleared to leave, and driving to my next destination to be highly inconvenient.
I can imagine what my dear friend G** would say, so I will preclude her objection. It could be a lot worse. It's not hemodialysis after all, and, unlike hemodialysis, it will end in five more weeks. Best take it philosophically as yet another tourist ride into chronic illness where I get to return to something resembling home afterwards. Then, I will be able to tell my patients what it will be like for them--this is the value of involuntary experiential internal medicine.
___________________
* We were best friends in kindergarten. He is no longer a kindergartener. That would be weird no matter how you read it.
B is the only one of my close friends my own age who can give me a run for my money in medical adventures. He is currently recovering from a cardiac valve replacement, the latest of his many heart surgeries. (He's all heart, I'm all head.)
** G is not exactly my age, but can go toe-to-toe with me any day on premature health nightmares.
Wednesday, May 30, 2012
HBO, Day 2: The King's Speech
Awfully good movie. Odd way to see it. (Yesterday, I watched 'The Visitor'--also an excellent film.)
Note to self:
Isotonic exercises and crunches appear to result in sinus aches when done in a hyperbaric chamber.
Note to self:
Isotonic exercises and crunches appear to result in sinus aches when done in a hyperbaric chamber.
Tuesday, May 29, 2012
HBO Special
Today, I had a hyperbaric oxygen treatment.
I spent ninety minutes at two-and-a-half atmospheres of pure oxygen with two five minute breaks of two-and-a-half atmospheres of 'medical air' to prevent oxygen toxicity. It took fifteen minutes to go from one atmosphere to two-and-a-half, and fifteen minutes to go back. That is a long time to lie in a clear acrylic tube the size of Fat Albert's coffin.
I survived. I watched a movie. I will do it again tomorrow.
Goodnight.
I spent ninety minutes at two-and-a-half atmospheres of pure oxygen with two five minute breaks of two-and-a-half atmospheres of 'medical air' to prevent oxygen toxicity. It took fifteen minutes to go from one atmosphere to two-and-a-half, and fifteen minutes to go back. That is a long time to lie in a clear acrylic tube the size of Fat Albert's coffin.
I survived. I watched a movie. I will do it again tomorrow.
Goodnight.
Thursday, May 24, 2012
Dr. Tumoriffic's All-Natural Blood Pressure Control Secret
The other day, as I discussed starting blood pressure medication with a patient. He said, "but isn't there a natural way?"
I hope I didn't drop my professional demeanor, but I found the question profoundly irritating.
The answer is, at least for some people, sure, there is a natural way. Only it's not what he was thinking. He was hoping there was some herb or vitamin pill that he could take to lower his blood pressure for a few cents a day with no side effects. There ain't no such thing.
'Natural' has come to mean easy and risk-free. It is a marketing term like 'classic' or 'authentic' that is rarely used meaningfully anymore. Easy and risk-free remedies only seem natural in a culture where it feels natural to flick a switch and have light, where food can be kept for days or weeks without spoiling, where poop disappears down the drain without contaminating your water, and anyone can hop in car, a bus, or a plane and travel hundreds or thousands of miles in a day. Easy answers are not natural, but artificial, and they often come with side effects.
The genuinely natural, pill-free way to treat blood pressure is not easy, nor is it free of side effects. If a patient's pressure is not at so-high-their-brain-is-about-to-burst-out-their-ear level, I may encourage them to try it. Here's the secret, natural way to lower your blood pressure and live longer: get enough sleep: exercise several times a week, the more the better; eat an unprocessed, mostly plant-based diet with moderate protein and fat, generally, the less the better. If your weight comes down, your blood pressure might as well. Now, keep that up for the rest of your life. Side effects include orthopedic injury, wardrobe malfunction, and culinary ennui. You'll probably still need a pill when you get old, because it is a normal part of aging.
Most often, my patients can't do the natural way. Their work hours and commutes are too long, and they have to take care of families. They would cut their hours, but they don't want to be singled out as the one at work who obeys the limits of human physiology, or, maybe, they just need the money. Usually, I end up having to put them on a pill or two. Most people whose blood pressure is successfully lowered with pills live longer than they would have otherwise and do not have side effects. Not all.
Now, if they ever market a weed as effective at lowering blood pressure as a pill, I guarantee you that it will be annoying to take properly and have side effects--just like a pill.
I hope I didn't drop my professional demeanor, but I found the question profoundly irritating.
The answer is, at least for some people, sure, there is a natural way. Only it's not what he was thinking. He was hoping there was some herb or vitamin pill that he could take to lower his blood pressure for a few cents a day with no side effects. There ain't no such thing.
'Natural' has come to mean easy and risk-free. It is a marketing term like 'classic' or 'authentic' that is rarely used meaningfully anymore. Easy and risk-free remedies only seem natural in a culture where it feels natural to flick a switch and have light, where food can be kept for days or weeks without spoiling, where poop disappears down the drain without contaminating your water, and anyone can hop in car, a bus, or a plane and travel hundreds or thousands of miles in a day. Easy answers are not natural, but artificial, and they often come with side effects.
The genuinely natural, pill-free way to treat blood pressure is not easy, nor is it free of side effects. If a patient's pressure is not at so-high-their-brain-is-about-to-burst-out-their-ear level, I may encourage them to try it. Here's the secret, natural way to lower your blood pressure and live longer: get enough sleep: exercise several times a week, the more the better; eat an unprocessed, mostly plant-based diet with moderate protein and fat, generally, the less the better. If your weight comes down, your blood pressure might as well. Now, keep that up for the rest of your life. Side effects include orthopedic injury, wardrobe malfunction, and culinary ennui. You'll probably still need a pill when you get old, because it is a normal part of aging.
Most often, my patients can't do the natural way. Their work hours and commutes are too long, and they have to take care of families. They would cut their hours, but they don't want to be singled out as the one at work who obeys the limits of human physiology, or, maybe, they just need the money. Usually, I end up having to put them on a pill or two. Most people whose blood pressure is successfully lowered with pills live longer than they would have otherwise and do not have side effects. Not all.
Now, if they ever market a weed as effective at lowering blood pressure as a pill, I guarantee you that it will be annoying to take properly and have side effects--just like a pill.
For a Breath of Fresh Air, Go to Manhattan
The developments are coming so fast and furious, I'll put off finishing the second part of the last post. The part of the last post that I edited out can wait, since it does not further the plot. Meanwhile, the plot (or the snot) thickens.
Last Friday morning, I had an intake interview at the hyperbaric facility. It was extremely odd, since the intake appointment was with a doc who moonlights for my practice group, using my exam rooms and my literal office. A few hours later, Dr. Duchess of ENT, colleague to Hygeiea, Greco-Roman Goddess of Otolaryngology (my apologies to the Duchess that good goddess pseudonyms are hard to think of sometimes) installed tubes in my eardrums so my head doesn't explode when they're changing the pressure in the HBO chamber. That seems wise.
Things got really confusing on Wednesday. We took the long train trip to F'in' Famous Cancer Hospital to see Dr. The Fixer, plastic surgeon and man of mystery. Then, we took a walk uptown to Lummock Hospital, the new stomping grounds of Dr. The Coach. These men, along with Doctor Mister Rogers, performed the giant operation that saved my life and my right eye in 2005, plus a couple of other procedures. In March, when I had my clival cleaning, Dr. The Coach had been away on a 2-and-a-half month sabbatical/lecture tour before he settled into his position at Lummock.
Here is another odd medical fact I would like to impart from my adventures. Once you have had a lot of surgical procedures in an area as complicated as the sinuses and throat, your face is not just that of an okapi. As the various surgeons are telling me, it's like a game of pick-up sticks. A quick scrape-out back through the nose to the clivus as was just done to me is one thing, but it is another to squeeze a tissue patch back there that is big enough to cover my clivus and has blood vessels long enough to plug into good circulation. It would take a large incision through tissues that have been cut and irradiated and scarred many times.
Both Dr. The Coach and Dr. The Fixer have independently concluded that, with what the inside of my face has been through, a graft is a risky proposition, and everything else should be tried first unless I am on death's door from an infection. I am not sick enough to need such a drastic move. Dr. Mister Rogers and Dr. The Fixer as a team have done four or five similar procedures that ultimately went well, but they were nothing to be undertaken lightly. (Incidentally, they do like the HBO and nebulized antibiotics. They are inconvenient, but noninvasive interventions.)
Meanwhile, to further muddy the waters, the Medical Mafia were speaking to Dr. Proton, a grand old man of radiation. He thinks that the clivus must be covered some day, but not to rush it. I just hope I can wait long enough for someone to invent spray-on, vascularized mucus membrane.
He also told them that someone who has received as much radiation to one spot as I have in both childhood and adulthood is virtually unique. Oh. Good. It's nice to feel special.
As I was writing this, Dr. Treabeard, the Famous ENT Surgeon just sent an e-mail. As soon as I can be squeezed into his busy schedule, he wants to sit down with me and Kathleen and discuss surgery. He notes that he will probably have to go in though the old incisions. Oh. Lovely.
Are you confused yet? It means you're paying attention. I have top flight physicians in top flight institutions disagreeing throroughly with each other. Why? I wrote several paragraphs of speculation, but that's a waste of everyone's time, so I just deleted it.
This is my plan for now: This is life and death. I will give a respectful and attentive hearing to Dr. Treebeard. I will probably check with a couple of other leading lights at the nearby medical Meccas. I will talk to Dr. Hygeiea, who is a friend, a first class doc, and geographically the closest of them. Then, I will ask the 2005 team, now at F'in' Famous and Lummock to tell me what they think of what I have been told. I may ask them to speak with Dr. Treebeard directly. I have entrusted my life to these surgeons many times, and they have proven their worth personally to me as well as in multiple clinical trials. K and I will, at the end of the day, probably defer to whatever they recommend. B, being 8, has no choice in the matter. For now, it looks like no surgery, and what a relief that is!
Last Friday morning, I had an intake interview at the hyperbaric facility. It was extremely odd, since the intake appointment was with a doc who moonlights for my practice group, using my exam rooms and my literal office. A few hours later, Dr. Duchess of ENT, colleague to Hygeiea, Greco-Roman Goddess of Otolaryngology (my apologies to the Duchess that good goddess pseudonyms are hard to think of sometimes) installed tubes in my eardrums so my head doesn't explode when they're changing the pressure in the HBO chamber. That seems wise.
Things got really confusing on Wednesday. We took the long train trip to F'in' Famous Cancer Hospital to see Dr. The Fixer, plastic surgeon and man of mystery. Then, we took a walk uptown to Lummock Hospital, the new stomping grounds of Dr. The Coach. These men, along with Doctor Mister Rogers, performed the giant operation that saved my life and my right eye in 2005, plus a couple of other procedures. In March, when I had my clival cleaning, Dr. The Coach had been away on a 2-and-a-half month sabbatical/lecture tour before he settled into his position at Lummock.
Here is another odd medical fact I would like to impart from my adventures. Once you have had a lot of surgical procedures in an area as complicated as the sinuses and throat, your face is not just that of an okapi. As the various surgeons are telling me, it's like a game of pick-up sticks. A quick scrape-out back through the nose to the clivus as was just done to me is one thing, but it is another to squeeze a tissue patch back there that is big enough to cover my clivus and has blood vessels long enough to plug into good circulation. It would take a large incision through tissues that have been cut and irradiated and scarred many times.
Both Dr. The Coach and Dr. The Fixer have independently concluded that, with what the inside of my face has been through, a graft is a risky proposition, and everything else should be tried first unless I am on death's door from an infection. I am not sick enough to need such a drastic move. Dr. Mister Rogers and Dr. The Fixer as a team have done four or five similar procedures that ultimately went well, but they were nothing to be undertaken lightly. (Incidentally, they do like the HBO and nebulized antibiotics. They are inconvenient, but noninvasive interventions.)
Meanwhile, to further muddy the waters, the Medical Mafia were speaking to Dr. Proton, a grand old man of radiation. He thinks that the clivus must be covered some day, but not to rush it. I just hope I can wait long enough for someone to invent spray-on, vascularized mucus membrane.
He also told them that someone who has received as much radiation to one spot as I have in both childhood and adulthood is virtually unique. Oh. Good. It's nice to feel special.
As I was writing this, Dr. Treabeard, the Famous ENT Surgeon just sent an e-mail. As soon as I can be squeezed into his busy schedule, he wants to sit down with me and Kathleen and discuss surgery. He notes that he will probably have to go in though the old incisions. Oh. Lovely.
Are you confused yet? It means you're paying attention. I have top flight physicians in top flight institutions disagreeing throroughly with each other. Why? I wrote several paragraphs of speculation, but that's a waste of everyone's time, so I just deleted it.
This is my plan for now: This is life and death. I will give a respectful and attentive hearing to Dr. Treebeard. I will probably check with a couple of other leading lights at the nearby medical Meccas. I will talk to Dr. Hygeiea, who is a friend, a first class doc, and geographically the closest of them. Then, I will ask the 2005 team, now at F'in' Famous and Lummock to tell me what they think of what I have been told. I may ask them to speak with Dr. Treebeard directly. I have entrusted my life to these surgeons many times, and they have proven their worth personally to me as well as in multiple clinical trials. K and I will, at the end of the day, probably defer to whatever they recommend. B, being 8, has no choice in the matter. For now, it looks like no surgery, and what a relief that is!
Wednesday, May 23, 2012
It's 'Snot Over
This was originally going to be a ridiculously long post. K persuaded me to cut it in two, so it ends in a cliffhanger. This part of the story may give nonmedical people an idea of how difficult medical decision-making is when patients have rare or complicated problems. The right answer is not always obvious.
Ever since Dr. Hygeia, Greco-Roman Goddess of Otolaryngology, discovered that I had some truly nasty snot left over after surgery, life has been a whirlwind again. While this is no tumor, it's the biggest deal since my last tumor in 2005.
I had a follow-up appointment at Ben and Jerry's Hospital with Dr. Prince Clivus Jr. and Dr. Bug, the Downtown ID Guru, and they unexpectedly whisked me down the hall to the office of the Dr. Treebeard the famous ENT surgeon. (This sort of behavior is what impressed me about F'in Famous Cancer Hospital. There was a seamless cooperation among the specialties, so that when I, the patient, showed up to see one, I saw all three. Now, this part of Ben and Jerry's Hospital seems to work like that.)
Dr. Treebeard is a tallish, thin, late-middle-aged man with glasses, no beard, a gentle smile and air of self-assurance in his chosen field--radiation-induced osteonecrotic mutant booger clivuses from hell. This man makes his living fixing Okapis like me, often by grafting skin from somewhere else onto parts that wouldn't heal. (Makes you wonder how the real okapis got their zebra-like hind quarters. Trans-specific graft?) Usually, he is able to take local, redundant tissue, move it around, and cover the hole. However, I have had so much radiation and surgery to that area, there is hardly anything left there, and none of it redundant. So, he proposed that he might 'harvest' a piece of my inner forearm skin and attach it over my clivus, hopefully putting an end to this die-off-dry-off-bug-off (i.e., get infected)-cut-off (i.e., get surgery) cycle I have entered.
This sounds like a real barrel of monkeys. I haven't had a major surgery since way back in 2007, and if you don't practice, you get rusty.
To add to the surreality of the experience, he also proposed putting me in a hyberbaric oxygen (HBO) chamber for two hours a day 5 days a week for 4 weeks before surgery. (An HBO chamber looks like the suspended animation chamber in which John Hurt awoke during the first scene from Alien. Only, I will avoid getting too close to the slimey, egg-like things in the basement.) Anyway, with HBO, I'd get to catch up on Game of Thrones (not really - not the sort of thing you watch with nurses and other patients in the room), and the pure oxygen at 2.5 atmospheres would, theoretically, improve the oxygen supply to my clivus and surrounds. In the best case scenario, normal local mucosa would grow back over, and I would get 10 more sessions and a pat on the head, but no surgery. More likely, though, I would need surgery. Ugh.
So, Dr. Bug, Downtown ID Guru, called me the next day. He had given a talk on HBO and infection at a medical conference a few years ago. There was a lot of hype, but not strong evidence. There were studies that supported, and studies that did not support. The net effect looked like it approached placebo for dealing with infections, and there were adverse effects too.
My rule of thumb is that when the sum of studies shows a very small effect that approaches statistical and clinical insignificance, there is no real effect. This is due to something called 'publication bias.' Positive results are more likely to get published and thus factored in. The negative studies get filed away, because who ever gets famous publishing downers? (And yes, who expects the drug company to fund your next study if the last one you did laid an egg in public?)
Dr. Bug and I agreed that it might be a substantial waste of time and money, but also agreed that it made sense to do a literature search to see if any new data have come out since his talk or if there is some other way in which it might be helpful other than treatment of infection. After all, Dr. Treebeard, the Famous ENT Surgeon is no slouch and would not make such a recommendation lightly. (I'm told he is exceptionally slow and thoughtful with important decisions.)
Well, thanks to the best medical literature searcher I know (my K, my wife, and attorney by profession), I soon discovered that HBO appears to have very good results with radio-osteo-necrosis! In addition, it can apparently be used to improve the chances of success for exactly the kind of surgery Dr. Treebeard, the Famous ENT Surgeon was recommending.
The way that HBO is used in conjunction with a flap graft over radio-necrosed bone in a case like this is called 'the Marx Protocol.' Surprisingly, it does not involve the proletariat rising up and seizing the means of production, nor does it involve a duck. However, the Marx Protocol fits me perfectly. In a study of slightly narcissistic, white, upper-middle class doctor-lawyers. . . No. Start over. In patients with radio-osteonecrosis (bone that has died off from irradiation), after all the dead tissue has been surgically removed (as it was for me on March 28), twenty sessions of HBO can cause proliferation of new blood vessels, which prepare the site for a successful graft. Ten more sessions after surgery top it off can facilitate healing.
So for my particular problem, done in this particular way, HBO looks like a very good idea. As far as we can tell. Based on limited data. Probably. We think.
Quick digression. Dr. Bug, Downtown ID Guru is probably as brilliant an infectious disease (ID) specialist as you can find anywhere. (Having almost been an ID specialist, I know plenty of greats.) However, modern medicine is so broad and complex, that no one can know all of it at all times. As Dr. Mark Crislip, an ID specialist and blogger puts it, "it's like trying to drink from a fire hose." If you step a little bit out of your are of expertise, you often will not have the answer at your fingertips.
So, if you, as a patient, are a horse (e.g., have an ordinary heart attack, pneumonia, or whatever), your docs have probably dealt with dozens of horses, so you are probably in good hands. When you become a zebra (maybe a more than a couple of common problems at once, or one strange problem), or worse, an Okapi (me and a few other weirdos), you have to stay on your toes and double check things. Get second opinions. Look stuff up (using reliable sources only). Trust, but verify. (Who said that line? One rhetorical dollar for the right reference.)
Okay, back to the story. All of this has to happen very fast. The longer I breath on this radiation-damaged, but living bone, the more likely it becomes that it will dry off and die off, making the Marx Protocol useless. The graft could die in less time than it took the Paris Commune (and no, lefty friends, it's not too soon to joke about that). Thus, the clock is running, and there is an army of insurance bureaucrats arrayed against us to make sure we either cannot get what is needed on time, or we go bankrupt.
Stay tuned for more madcap clivus adventures when I update with what would have been the second half of this post1
Ever since Dr. Hygeia, Greco-Roman Goddess of Otolaryngology, discovered that I had some truly nasty snot left over after surgery, life has been a whirlwind again. While this is no tumor, it's the biggest deal since my last tumor in 2005.
I had a follow-up appointment at Ben and Jerry's Hospital with Dr. Prince Clivus Jr. and Dr. Bug, the Downtown ID Guru, and they unexpectedly whisked me down the hall to the office of the Dr. Treebeard the famous ENT surgeon. (This sort of behavior is what impressed me about F'in Famous Cancer Hospital. There was a seamless cooperation among the specialties, so that when I, the patient, showed up to see one, I saw all three. Now, this part of Ben and Jerry's Hospital seems to work like that.)
Dr. Treebeard is a tallish, thin, late-middle-aged man with glasses, no beard, a gentle smile and air of self-assurance in his chosen field--radiation-induced osteonecrotic mutant booger clivuses from hell. This man makes his living fixing Okapis like me, often by grafting skin from somewhere else onto parts that wouldn't heal. (Makes you wonder how the real okapis got their zebra-like hind quarters. Trans-specific graft?) Usually, he is able to take local, redundant tissue, move it around, and cover the hole. However, I have had so much radiation and surgery to that area, there is hardly anything left there, and none of it redundant. So, he proposed that he might 'harvest' a piece of my inner forearm skin and attach it over my clivus, hopefully putting an end to this die-off-dry-off-bug-off (i.e., get infected)-cut-off (i.e., get surgery) cycle I have entered.
This sounds like a real barrel of monkeys. I haven't had a major surgery since way back in 2007, and if you don't practice, you get rusty.
To add to the surreality of the experience, he also proposed putting me in a hyberbaric oxygen (HBO) chamber for two hours a day 5 days a week for 4 weeks before surgery. (An HBO chamber looks like the suspended animation chamber in which John Hurt awoke during the first scene from Alien. Only, I will avoid getting too close to the slimey, egg-like things in the basement.) Anyway, with HBO, I'd get to catch up on Game of Thrones (not really - not the sort of thing you watch with nurses and other patients in the room), and the pure oxygen at 2.5 atmospheres would, theoretically, improve the oxygen supply to my clivus and surrounds. In the best case scenario, normal local mucosa would grow back over, and I would get 10 more sessions and a pat on the head, but no surgery. More likely, though, I would need surgery. Ugh.
So, Dr. Bug, Downtown ID Guru, called me the next day. He had given a talk on HBO and infection at a medical conference a few years ago. There was a lot of hype, but not strong evidence. There were studies that supported, and studies that did not support. The net effect looked like it approached placebo for dealing with infections, and there were adverse effects too.
My rule of thumb is that when the sum of studies shows a very small effect that approaches statistical and clinical insignificance, there is no real effect. This is due to something called 'publication bias.' Positive results are more likely to get published and thus factored in. The negative studies get filed away, because who ever gets famous publishing downers? (And yes, who expects the drug company to fund your next study if the last one you did laid an egg in public?)
Dr. Bug and I agreed that it might be a substantial waste of time and money, but also agreed that it made sense to do a literature search to see if any new data have come out since his talk or if there is some other way in which it might be helpful other than treatment of infection. After all, Dr. Treebeard, the Famous ENT Surgeon is no slouch and would not make such a recommendation lightly. (I'm told he is exceptionally slow and thoughtful with important decisions.)
Well, thanks to the best medical literature searcher I know (my K, my wife, and attorney by profession), I soon discovered that HBO appears to have very good results with radio-osteo-necrosis! In addition, it can apparently be used to improve the chances of success for exactly the kind of surgery Dr. Treebeard, the Famous ENT Surgeon was recommending.
The way that HBO is used in conjunction with a flap graft over radio-necrosed bone in a case like this is called 'the Marx Protocol.' Surprisingly, it does not involve the proletariat rising up and seizing the means of production, nor does it involve a duck. However, the Marx Protocol fits me perfectly. In a study of slightly narcissistic, white, upper-middle class doctor-lawyers. . . No. Start over. In patients with radio-osteonecrosis (bone that has died off from irradiation), after all the dead tissue has been surgically removed (as it was for me on March 28), twenty sessions of HBO can cause proliferation of new blood vessels, which prepare the site for a successful graft. Ten more sessions after surgery top it off can facilitate healing.
So for my particular problem, done in this particular way, HBO looks like a very good idea. As far as we can tell. Based on limited data. Probably. We think.
Quick digression. Dr. Bug, Downtown ID Guru is probably as brilliant an infectious disease (ID) specialist as you can find anywhere. (Having almost been an ID specialist, I know plenty of greats.) However, modern medicine is so broad and complex, that no one can know all of it at all times. As Dr. Mark Crislip, an ID specialist and blogger puts it, "it's like trying to drink from a fire hose." If you step a little bit out of your are of expertise, you often will not have the answer at your fingertips.
So, if you, as a patient, are a horse (e.g., have an ordinary heart attack, pneumonia, or whatever), your docs have probably dealt with dozens of horses, so you are probably in good hands. When you become a zebra (maybe a more than a couple of common problems at once, or one strange problem), or worse, an Okapi (me and a few other weirdos), you have to stay on your toes and double check things. Get second opinions. Look stuff up (using reliable sources only). Trust, but verify. (Who said that line? One rhetorical dollar for the right reference.)
Okay, back to the story. All of this has to happen very fast. The longer I breath on this radiation-damaged, but living bone, the more likely it becomes that it will dry off and die off, making the Marx Protocol useless. The graft could die in less time than it took the Paris Commune (and no, lefty friends, it's not too soon to joke about that). Thus, the clock is running, and there is an army of insurance bureaucrats arrayed against us to make sure we either cannot get what is needed on time, or we go bankrupt.
Stay tuned for more madcap clivus adventures when I update with what would have been the second half of this post1
Tuesday, May 15, 2012
An Import of Insurance Malfeasance
Life is happening too fast to record. Each time I start an entry, it's obsolete by paragraph 2. I'll wrap my head around some of it and publish soon.
In the meantime, I want you to see yet another tale of insurance company misbehavior written by and about my friend, Tom, whose blog is here: Citizen of Oa.
Saturday, May 12, 2012
As Close to Nirvana as a Day Can Get and be Legal
Written May 6, 2012
I have decided to take a short (hopefully) sabbatical from work.
Within the space of a little more than a month-and-half, hearing that "you had a stroke and have a probably hideously fatal cancer," followed by "no, probably just chronic, needing lifetime, low-level chemo," to "lickety-split surgery" (not the GYN kind) followed by "oh, just a drug resistant osteomyelitis that will require at least 6 weeks of toxic antibiotics" to "oh, just a dead bone and a mutant booger, but we should keep the same treatment," to "we'd better stop the antibiotics, because they're giving you chemical hepatitis and other stuff," to "gee, that looks like a new piece of dead bone and tissue with a drug resistant pus icing just like a month ago, but don't worry, you can fix this by snorting antibiotics," to "well, back to the O.R. with you and what's left of your clivus," to "JUST KIDDING ABOUT THE O.R. (probably)," and "there is still the matter of that little stroke" can be a bit distracting.
Despite myself, during these six weeks, on and off, I have continued to see my patients as close to full time as I can. I have made several of the best catches of my career in the office, but that only goes so far when new tests and (my) doctors' appointments disrupt the day with regular irregularity. My pace has slowed to a crawl, and my mind is a little preoccupied. So, work and I have agreed that some time off is warranted.
However, I am the kind of guy to see the glisten on any dogpile. This is my first real vacation since the first day of medical school. I have temporarily absolved myself of all adult obligations that are not spousal or parental. For a brief moment, I will only be a father, a husband, a patient, and a dude. This is incredibly liberating. Even during the darkest days of osteosarcoma treatment, I still worried that I had to study for the Medical Boards and still was a public health activist. (The latter helped keep me from regressing to total childishness, but I can allow that now--for a minute.)
Time off was clarified on Thursday, and on Friday and Saturday, I had the best possible time I can imagine short of annoying the DEA.
On Friday night, K and I attended a live Nerdist Podcast, where three excellent standup comedians did short monologues mostly about their penises and then convened to revel in their geekitude. I laughed so hard my bowels hurt.
This morning, I slept in, but got up early enough to go to an early showing of The Avengers with K, B, and some friends. During the scary parts, B would come sit on my lap, and I would tickle his back. Again, I laughed almost to tears.
Then, we visited my sister-in-law's house and had some quality time with her dog and my brother-in-law's brother's puppy. I then attended a hearing at the Food Court, where I tore my yaki at the House of Maki, while B spent his allowance on some Legos.
After that, while our sons entertained each other, I went on a hike on the Freedom Road with my buddy Joel. We saw a herd of deer and met Mezozoic Myrtle the Big Snapping Turtle. (She was in a mood. It is egg-laying season, so she was particularly snappish.) See video:
Finally, K drove to New Hampshire, while B and I poured over a Lego catalog in the back seat. In New Hampshire, we attended a wonderful outdoor Cinco de Mayo party hosted by one of and attended by another of my very best ever friends from residency or anywhere. I played the guitar and sang, K sang, and B played the Bauran through rousing renditions of Hombre Muy Gordo (to the tune of Guantanamera), The Old MacDonald Blues, and Closer I Am to Fine. That little set was a longstanding dream realized for the first time.
We concluded the evening with a ride home with me and B in the back seat playing a pacifistic (at least after I had destroyed all dangerous competition) victory strategy on Civilization V on my laptop. He also asked questions way too advanced for an 8-year-old about what was the Great Depression, what is the Great Recession, what is inflation, what is deflation, etc.
The only way the day could have been more perfect is if I had remembered to charge my the battery for my fancy camera.
Eventually, and many times more, it will be back into the breach, but for now, forget it, Henry V. I'm taking some well-deserved R&R way back behind the lines!
I have decided to take a short (hopefully) sabbatical from work.
Within the space of a little more than a month-and-half, hearing that "you had a stroke and have a probably hideously fatal cancer," followed by "no, probably just chronic, needing lifetime, low-level chemo," to "lickety-split surgery" (not the GYN kind) followed by "oh, just a drug resistant osteomyelitis that will require at least 6 weeks of toxic antibiotics" to "oh, just a dead bone and a mutant booger, but we should keep the same treatment," to "we'd better stop the antibiotics, because they're giving you chemical hepatitis and other stuff," to "gee, that looks like a new piece of dead bone and tissue with a drug resistant pus icing just like a month ago, but don't worry, you can fix this by snorting antibiotics," to "well, back to the O.R. with you and what's left of your clivus," to "JUST KIDDING ABOUT THE O.R. (probably)," and "there is still the matter of that little stroke" can be a bit distracting.
Despite myself, during these six weeks, on and off, I have continued to see my patients as close to full time as I can. I have made several of the best catches of my career in the office, but that only goes so far when new tests and (my) doctors' appointments disrupt the day with regular irregularity. My pace has slowed to a crawl, and my mind is a little preoccupied. So, work and I have agreed that some time off is warranted.
However, I am the kind of guy to see the glisten on any dogpile. This is my first real vacation since the first day of medical school. I have temporarily absolved myself of all adult obligations that are not spousal or parental. For a brief moment, I will only be a father, a husband, a patient, and a dude. This is incredibly liberating. Even during the darkest days of osteosarcoma treatment, I still worried that I had to study for the Medical Boards and still was a public health activist. (The latter helped keep me from regressing to total childishness, but I can allow that now--for a minute.)
Time off was clarified on Thursday, and on Friday and Saturday, I had the best possible time I can imagine short of annoying the DEA.
On Friday night, K and I attended a live Nerdist Podcast, where three excellent standup comedians did short monologues mostly about their penises and then convened to revel in their geekitude. I laughed so hard my bowels hurt.
This morning, I slept in, but got up early enough to go to an early showing of The Avengers with K, B, and some friends. During the scary parts, B would come sit on my lap, and I would tickle his back. Again, I laughed almost to tears.
Then, we visited my sister-in-law's house and had some quality time with her dog and my brother-in-law's brother's puppy. I then attended a hearing at the Food Court, where I tore my yaki at the House of Maki, while B spent his allowance on some Legos.
After that, while our sons entertained each other, I went on a hike on the Freedom Road with my buddy Joel. We saw a herd of deer and met Mezozoic Myrtle the Big Snapping Turtle. (She was in a mood. It is egg-laying season, so she was particularly snappish.) See video:
Finally, K drove to New Hampshire, while B and I poured over a Lego catalog in the back seat. In New Hampshire, we attended a wonderful outdoor Cinco de Mayo party hosted by one of and attended by another of my very best ever friends from residency or anywhere. I played the guitar and sang, K sang, and B played the Bauran through rousing renditions of Hombre Muy Gordo (to the tune of Guantanamera), The Old MacDonald Blues, and Closer I Am to Fine. That little set was a longstanding dream realized for the first time.
We concluded the evening with a ride home with me and B in the back seat playing a pacifistic (at least after I had destroyed all dangerous competition) victory strategy on Civilization V on my laptop. He also asked questions way too advanced for an 8-year-old about what was the Great Depression, what is the Great Recession, what is inflation, what is deflation, etc.
The only way the day could have been more perfect is if I had remembered to charge my the battery for my fancy camera.
Eventually, and many times more, it will be back into the breach, but for now, forget it, Henry V. I'm taking some well-deserved R&R way back behind the lines!
Friday, May 4, 2012
The Immortal Booger!
AAAAAAAAH! It's still there! It's like the evil clown in the horror movie. You were sure you got away, that he was killed when the steamroller crushed his screaming form into the cement. But somehow, like a malevolent beachball, he has reinflated himself and is now standing calmly, two feet behind you and chuckling to himself.
I visited my friend and colleague, Dr. Hygeia, supermom and Greco-Roman goddess of Otolaryngology, yesterday. She took her magic scope and looked up my nose at my exposed clivus. She saw puss and dead tissue, just like before the surgery and before the four weeks of intravenous triple antibiotics.
Schmidt! Frack! Darn! Brotherclucker! This means the antibiotics didn't do doodly-squat! Of course, in retrospect, why would they? The whole problem was that that spot gets no blood, so what would an intravenous anything do for that? On the bright side, the fact that no blood gets in means none got out to infect the rest of me, but it's only a matter of time. No one needs a seething cesspool behind their face.
"You might need another debridement," Dr. Downtown ID Guru says. "What?" I say (totally ignoring the 'might' part). "Then when does it end? You cut out the infected tissue and sand down to living bone. I go home, continue to breath on it. It dries up, gets reinfected, and we have to do it all over again in a month? Is there an endpoint? Do you want my face to end up looking like something in a funhouse mirror?"
Luckily, out here in the boondocks, Dr. Hygeia had recently visited Q, and Q has a nifty new device to nebulize (make into a cloud) antibiotics and antifungals so you can snort them through the nose like the finest Colombian. I would get less medicine with more of it going to exactly the right place. "Oh," says Dr. Downtown ID Guru, "she might be onto something!"
This might keep the infection at bay until someone invents something that will patch it permanently. Maybe I'll join the Borg!
Stay tuned. Looks like we've been approved for another season.
I visited my friend and colleague, Dr. Hygeia, supermom and Greco-Roman goddess of Otolaryngology, yesterday. She took her magic scope and looked up my nose at my exposed clivus. She saw puss and dead tissue, just like before the surgery and before the four weeks of intravenous triple antibiotics.
Schmidt! Frack! Darn! Brotherclucker! This means the antibiotics didn't do doodly-squat! Of course, in retrospect, why would they? The whole problem was that that spot gets no blood, so what would an intravenous anything do for that? On the bright side, the fact that no blood gets in means none got out to infect the rest of me, but it's only a matter of time. No one needs a seething cesspool behind their face.
"You might need another debridement," Dr. Downtown ID Guru says. "What?" I say (totally ignoring the 'might' part). "Then when does it end? You cut out the infected tissue and sand down to living bone. I go home, continue to breath on it. It dries up, gets reinfected, and we have to do it all over again in a month? Is there an endpoint? Do you want my face to end up looking like something in a funhouse mirror?"
Luckily, out here in the boondocks, Dr. Hygeia had recently visited Q, and Q has a nifty new device to nebulize (make into a cloud) antibiotics and antifungals so you can snort them through the nose like the finest Colombian. I would get less medicine with more of it going to exactly the right place. "Oh," says Dr. Downtown ID Guru, "she might be onto something!"
This might keep the infection at bay until someone invents something that will patch it permanently. Maybe I'll join the Borg!
Stay tuned. Looks like we've been approved for another season.
Tuesday, May 1, 2012
No More Antibiotics (Abx)
Hello, friends, friends-not-yet-met (a.k.a. strangers), and family!
They stopped my antibiotics early on Friday and took that nasty PICC line out. I'm very happy, but I'll have to explain why another time.
But for now, here's a traditional ditty for Beltane. Funny how so many Christian rituals have a pagan origin!
It's Beginning to Look a Lot Like Beltane
(to the tune of 'It's Beginning to Look a Lot Like Christmas' by Meredith Wilson)
They stopped my antibiotics early on Friday and took that nasty PICC line out. I'm very happy, but I'll have to explain why another time.
But for now, here's a traditional ditty for Beltane. Funny how so many Christian rituals have a pagan origin!
It's Beginning to Look a Lot Like Beltane
(to the tune of 'It's Beginning to Look a Lot Like Christmas' by Meredith Wilson)
It's beginning to look a lot like Beltane,
Everywhere you go.
There's a bonfire on the hill,
And the druid is mixing swill.
He's sharpening a knife to sacrifice some Romans!
It's beginning to look a lot like Beltane,
Soon, the dance will start,
And the warrior guys will bring
All the prisoners from last spring,
And cut out their hearts,
And cut out their heaaaaaaaaaarts!
Happy Beltane!
Everywhere you go.
There's a bonfire on the hill,
And the druid is mixing swill.
He's sharpening a knife to sacrifice some Romans!
It's beginning to look a lot like Beltane,
Soon, the dance will start,
And the warrior guys will bring
All the prisoners from last spring,
And cut out their hearts,
And cut out their heaaaaaaaaaarts!
Happy Beltane!
Thursday, April 26, 2012
Another Brief Insurance Rant.
Yesterday, I saw yet another example of stupid insurance company tricks. This time, it was Tufts Health Plan. I used to think they were decent. Apparently, they will only pay for one routine visit per year. This is all fine and good if you're healthy.
In this case, my patient has diabetes. The guidelines for diabetes is that the patient should have quarterly visits with the primary care doctor. This allows me to adjust his medications appropriately and encourage him to double down on diet and exercise if his blood sugar is rising. Diabetic patients who attend their quarterly doctors' appointments tend to have fewer complications and ultimately cost the system less. So why would an insurance company want to discourage this behavior?
Because the current healthcare system (regarding this sort of issue, Robamney care is the same as our system has been for 60 years) is a game of musical chairs. Tufts Health Plan is gambling that by the time he has complications his employer will be contracted with a different insurance company, and that company will have to swallow the costs. Meanwhile, the patient swallows the costs of standard of care treatment. Just another example of how insurance companies don't save money for anyone but themselves.
Thanks, Demopublicans for locking this system more firmly into place! (And don't let Republican politicians off the hook. Despite their howling, Robamney care was conceived by the conservative Heritage Foundation and originally pushed by Republicans.) Incidentally, thanks also, AFL-CIO for coming up with employer-based health insurance 60 years ago. Other countries' labor movements had the foresight to hold out for better, more economical systems.
In this case, my patient has diabetes. The guidelines for diabetes is that the patient should have quarterly visits with the primary care doctor. This allows me to adjust his medications appropriately and encourage him to double down on diet and exercise if his blood sugar is rising. Diabetic patients who attend their quarterly doctors' appointments tend to have fewer complications and ultimately cost the system less. So why would an insurance company want to discourage this behavior?
Because the current healthcare system (regarding this sort of issue, Robamney care is the same as our system has been for 60 years) is a game of musical chairs. Tufts Health Plan is gambling that by the time he has complications his employer will be contracted with a different insurance company, and that company will have to swallow the costs. Meanwhile, the patient swallows the costs of standard of care treatment. Just another example of how insurance companies don't save money for anyone but themselves.
Thanks, Demopublicans for locking this system more firmly into place! (And don't let Republican politicians off the hook. Despite their howling, Robamney care was conceived by the conservative Heritage Foundation and originally pushed by Republicans.) Incidentally, thanks also, AFL-CIO for coming up with employer-based health insurance 60 years ago. Other countries' labor movements had the foresight to hold out for better, more economical systems.
Tuesday, April 24, 2012
Viral Creeping Crud
Last week, I felt
really sick--sicker than I have felt in years (with the exception of those few hours with killer vertigo). But so did K. And so did B. (B was only sick for about
12 hours and then went back to bouncing around like a pinball.)
So it was not cancer, nor was it an infected PICC line. Neither K nor B have a PICC line. I know. I've seen each of them without their clothes. It was some kind of viral illness. Now I am better. K is still recovering.
Meanwhile, other than last week's viral creeping crud, I feel better than I have in years. This may be due to:
a: a manic break,
b: enforced regularization of my sleep schedule by twice daily IV antibiotics,
c: treatment of what has been a chronic, smoldering infection around my clivus, or
d: I'm snorting cocaine so sneakily that even I am unaware of it.
I suspect the answer is either 'c', or a combination of 'b' and 'c'. Clearly, after the IV antibiotics are done, the long term maintenance of this feeling of well-being will require either surgery or chronic, low-dose antibiotics (like the ones they feed all conventionally raised livestock so as to breed resistant bacteria).
In any case, the possibility of feeling more energetic for a long time is very pleasant.
So it was not cancer, nor was it an infected PICC line. Neither K nor B have a PICC line. I know. I've seen each of them without their clothes. It was some kind of viral illness. Now I am better. K is still recovering.
Meanwhile, other than last week's viral creeping crud, I feel better than I have in years. This may be due to:
a: a manic break,
b: enforced regularization of my sleep schedule by twice daily IV antibiotics,
c: treatment of what has been a chronic, smoldering infection around my clivus, or
d: I'm snorting cocaine so sneakily that even I am unaware of it.
I suspect the answer is either 'c', or a combination of 'b' and 'c'. Clearly, after the IV antibiotics are done, the long term maintenance of this feeling of well-being will require either surgery or chronic, low-dose antibiotics (like the ones they feed all conventionally raised livestock so as to breed resistant bacteria).
In any case, the possibility of feeling more energetic for a long time is very pleasant.
Friday, April 13, 2012
Follow-up to Aetna's Dumbest Denial of Service Award
(See 2 posts ago for background.) I try to limit this blog to nonpolitical musings on my health and my day-to-day experiences as a doctor, but these days, politics invades the practice of medicine all the time. In a previous post, I decried the behavior of Aetna in denying payment for patient's procedure contrary to their own written policy. Yesterday, I spoke to my patient's gastroenterologist. She had already called Aetna. It took a day of yelling at them over the phone, but they, eventually, conceded that their own policy supported paying for the procedure and went ahead and did it.
This is a shining example of why Robamney Care is a crock. Aetna just wasted hours of a highly-trained specialist's time. The doctor will have to charge everyone else more to make up for the time lost haggling with a moron, and the system will lose the benefit of several hours of expertise. Insurance companies are not designed to save money for the system. They are designed to save money for themselves whether they lower or INCREASE costs to the system. They are not part of the solution. They are part of the problem!
This is a shining example of why Robamney Care is a crock. Aetna just wasted hours of a highly-trained specialist's time. The doctor will have to charge everyone else more to make up for the time lost haggling with a moron, and the system will lose the benefit of several hours of expertise. Insurance companies are not designed to save money for the system. They are designed to save money for themselves whether they lower or INCREASE costs to the system. They are not part of the solution. They are part of the problem!
Thursday, April 12, 2012
A Splinter!
A couple of days ago, I had my follow-up appointment with Dr. Prince Clivus and the infectious disease guru, Dr. Bug. My clivus problem has been downgraded again. There was never any osteomyelitis (bone infection). Instead, all the pathologists found was dead bone covered with a patina of infectious glop (i.e. mutant booger from hell). The dead bone was acting just like a splinter--a haven for wayward bacteria that was safe from the bodies defenses. (This doesn't mean I'm off the hook for antibiotics. I have at least another month. Hooray.)
This answers several questions I had. Why didn't I feel sick? Why didn't I ever get a fever? Why were the labs usually associated with bone infections solidly normal?
But it leaves several more questions unanswered. Why the smell did I have that little stroke? They established that my vertigo symptoms could be explained by the location of the stroke. Then, they explained the stroke by saying that any inflammation on the skull base can cause a brainstem stroke. But can a splinter cause a stroke? Are you sure?
Then, there's the question of what happens in the long run. The inside of my head took a Fukushima vacation with all that radiation therapy, and some of the irradiated bone is open to the air. That means it's going to dry out and die again, and I'll have another splinter. Eventually, my entire skull is going to dry out, and they'll have to remove it. My head will look like a Dali clock. Obviously, unless I want to work in a freak show, that is not an option. The bone will have to be covered. This means another very difficult surgery is somewhere in my future. The tumor is gone, but the thrill goes on.
Meanwhile, in other news, a dear member of the extended family seems to have snatched the tumor torch from my hands. Enough already!
This answers several questions I had. Why didn't I feel sick? Why didn't I ever get a fever? Why were the labs usually associated with bone infections solidly normal?
But it leaves several more questions unanswered. Why the smell did I have that little stroke? They established that my vertigo symptoms could be explained by the location of the stroke. Then, they explained the stroke by saying that any inflammation on the skull base can cause a brainstem stroke. But can a splinter cause a stroke? Are you sure?
Then, there's the question of what happens in the long run. The inside of my head took a Fukushima vacation with all that radiation therapy, and some of the irradiated bone is open to the air. That means it's going to dry out and die again, and I'll have another splinter. Eventually, my entire skull is going to dry out, and they'll have to remove it. My head will look like a Dali clock. Obviously, unless I want to work in a freak show, that is not an option. The bone will have to be covered. This means another very difficult surgery is somewhere in my future. The tumor is gone, but the thrill goes on.
Meanwhile, in other news, a dear member of the extended family seems to have snatched the tumor torch from my hands. Enough already!
Tuesday, April 10, 2012
Aetna Wins the 2012 Dumbest Denial of Service Award
Today, on my desk arrived one of the most self-evidently stupid denials of service from insurance company I have ever seen.
Crohn's Disease is a horrible, mysterious inflammatory condition that may afflict any part of the GI tract from the mouth to the anus. It causes severe abdominal pain and diarrhea, often creating gut abscesses and boring holes that lead from the gut to the skin surface or to other organs such as the lungs. These are just a few of its tricks.
The misnamed 'small' intestine is that squiggly tube in the middle of your belly. It is about 21 feet long. It is extremely hard to detect problems there if they are more than a few inches in. This patient's gastroenterologist has done all of the standard tests one would do to look for Crohn's Disease, and they have not shown anything.
The logical next step, if you really think the patient may have the disease, is a capsule endoscopy. The patient swallows a pill that has a tiny camera. As the pill travels through gut, it snaps flash candids of the whatever or whoever is there. The patient carefully watches so she can retrieve the little traveler and send it back home once it has exited the from where the sun does not shine.
I checked Aetna's own website for the policy cited in the denial letter.
Tomorrow, I'm going to check to see if the gastroenterologist has appealed this yet. Assuming he has not, and assuming I can navigate the phone labyrinth (which is a big assumption), I'm going to town on these idiots tomorrow.
"Information received shows you do not require this procedure [a capsule endoscopy] for the initial diagnosis of suspected Crohn's Disease when conventional diagnostic tests, including small bowel follow through or abdominal CT and a recent esophago-gastro-duodenoscopy (EGD) have shown no evidence of disease. Thus, this test is not covered under your benefit plan."Now, allow me to explain for the non-medical types why this is such a profoundly stupid statement.
Crohn's Disease is a horrible, mysterious inflammatory condition that may afflict any part of the GI tract from the mouth to the anus. It causes severe abdominal pain and diarrhea, often creating gut abscesses and boring holes that lead from the gut to the skin surface or to other organs such as the lungs. These are just a few of its tricks.
The misnamed 'small' intestine is that squiggly tube in the middle of your belly. It is about 21 feet long. It is extremely hard to detect problems there if they are more than a few inches in. This patient's gastroenterologist has done all of the standard tests one would do to look for Crohn's Disease, and they have not shown anything.
The logical next step, if you really think the patient may have the disease, is a capsule endoscopy. The patient swallows a pill that has a tiny camera. As the pill travels through gut, it snaps flash candids of the whatever or whoever is there. The patient carefully watches so she can retrieve the little traveler and send it back home once it has exited the from where the sun does not shine.
I checked Aetna's own website for the policy cited in the denial letter.
"Aetna considers capsule endoscopy medically necessary for the following indications:I showed this policy to my eight year old son, B. B felt that Aetna would consider the capsule endoscopy medically necessary. Now, B is a good reader and smart kid, but you would think that an adult who is paid to interpret insurance policies could do at least as well as a bright third grader.
. . . 3. For initial diagnosis in persons with suspected Crohn's disease (abdominal pain or diarrhea plus one or more signs of inflammation (fever, elevated white blood cell count, elevated erythrocyte sedimentation rate, or bleeding) without evidence of disease on conventional diagnostic tests, including small-bowel follow-through or abdominal CT scan/CT enterography and upper and lower endoscopy (esophago-gastro-duodenoscopy (EGD) and colonoscopy; [italics added] . . ."
Tomorrow, I'm going to check to see if the gastroenterologist has appealed this yet. Assuming he has not, and assuming I can navigate the phone labyrinth (which is a big assumption), I'm going to town on these idiots tomorrow.
Thursday, April 5, 2012
The True Path.!
I have found the true path.! The path. to enlightenment! The shining path.! (Oops! Skip that last one.)
In any case, nearly one week sooner than I predicted, this morning (making me at least as accurate as people who get paid to predict recessions, presidential races, and the like), I received an e-mail from Dr. Prince Clivus saying that my pathology slides were complete. THERE IS NO SIGN OF TUMOR!!! It's all infection and necrotic bone, probably caused by radiation. Dr. The Jedi Master was the only one who was close to right. I'll send him the prize money tomorrow.
Alright. I can now really breathe. Honestly, three weeks ago, I was thinking about calling hospice and hiring Justin Bieber to sing at my funeral. (Things have really dried up for him since he was caught snorting a Le Whif, so he's looking for work.) Then, I was worried they would take out my whole clivus, and, without this essential bony support, the inside of my head would collapse onto spine, so I would look like a giant Pez dispenser. But it was not to be.
There is a saying in medicine based on the fact that common things happen commonly. "When you hear hoofbeats, don't look for zebras," meaning that to spend too much time looking for a rare disease to explain symptoms caused by a common one is foolish.* However, I have always been a zebra. But now, I'm not a zebra. I'm a friggin' Okapi. Even the experts were confused (except the Jedi Master, who had been around the block enough to suspect the truth).
Now, what to do about that rotting rest of my clivus after the antibiotics? That's a question for another time and another set of doctors.
*. . . or, a horse is a horse is a horse of course.
In any case, nearly one week sooner than I predicted, this morning (making me at least as accurate as people who get paid to predict recessions, presidential races, and the like), I received an e-mail from Dr. Prince Clivus saying that my pathology slides were complete. THERE IS NO SIGN OF TUMOR!!! It's all infection and necrotic bone, probably caused by radiation. Dr. The Jedi Master was the only one who was close to right. I'll send him the prize money tomorrow.
Alright. I can now really breathe. Honestly, three weeks ago, I was thinking about calling hospice and hiring Justin Bieber to sing at my funeral. (Things have really dried up for him since he was caught snorting a Le Whif, so he's looking for work.) Then, I was worried they would take out my whole clivus, and, without this essential bony support, the inside of my head would collapse onto spine, so I would look like a giant Pez dispenser. But it was not to be.
There is a saying in medicine based on the fact that common things happen commonly. "When you hear hoofbeats, don't look for zebras," meaning that to spend too much time looking for a rare disease to explain symptoms caused by a common one is foolish.* However, I have always been a zebra. But now, I'm not a zebra. I'm a friggin' Okapi. Even the experts were confused (except the Jedi Master, who had been around the block enough to suspect the truth).
Now, what to do about that rotting rest of my clivus after the antibiotics? That's a question for another time and another set of doctors.
*. . . or, a horse is a horse is a horse of course.
The Dreary Life of Daily Intercourse*
Antibiotic Ramblings
Life is returning to semi-normal. I'm on a full menu of antibiotics to cover all the inhabitants of the mutant bone booger. For breakfast, I start with a metronidazole tablet. (I really would like to strangle whoever came up with this formulation. How hard can it be to put on a little coating so it doesn't taste like Bitrex the minute it enters your mouth?) Then, Kathleen hooks my PICC line up so I can mainline some premium vancomycin for the next hour and a half. Lunch is light, but disgusting--another metronidazole. In the evening, I get an appetizer of IV ceftriaxone and another hit of vancomycin. Dessert is another metronidazole.
The technique of antibiotic choice in serious infection is to start by covering all likely pathogens until cultures can give you a more precise diagnosis. The menu is not exactly what was started in the hospital. Instead of ceftriaxone, I was originally on ciprofloxacin, but that made me a little hypomanic (a little happier than is good for me, but not over-the-top) and gave me nightmares filled with people who had a strange and disgusting disease that caused them to be completely covered (including their eyes) in black, lint-like hair and shrink to the size of dolls. They chased me around a haunted house begging me to cure them even though I couldn't help them and could catch the disease myself. For that, and, I surmise, because my cultures are not growing Pseudomonas**, I was switched to ceftriaxone.
I hope that further cultural developments, so to speak, will allow more narrowing of my regimen, specifically, I would love to get rid of the metronidazole. I am afraid that the vancomycin infusions are here to stay for at least five more weeks.
In other news, I inadvertently freaked my parents yesterday. I called to brag about what B's teacher had told me and Kathleen during our parent-teacher conference. My father answered. When I told him to put Mom on so I could tell them both about 'something', he practically wet himself thinking it was going to be bad news about pathology. The excitement of parenthood never ends.
*I stole that phrase from a high school classmate of my mother's. She was reciting the poem Tintern Abbey, by William Wordsworth. She stumbled over the line, "The dreary intercourse of daily life, Shall e'er prevail against us, or disturb. Our chearful faith that all which we behold," and created comedy gold.
**If Pseudomonas is bad, is Monas worse? I checked. The etymology was apparently not spelled out when the term was coined, so I can only speculate. Monas is a type of amoeba which bears no obvious resemblance to Pseudomonas and is not particularly pathogenic. The etymology of Monas may be from the Greek Monas, meaning 'unit', or may derive from Monad, which is an old way to refer to any single-cell organism or to Adolf Hitler. If this last is the case, I can say with certainty that a fake Hitler is less virulent that a real one.
Life is returning to semi-normal. I'm on a full menu of antibiotics to cover all the inhabitants of the mutant bone booger. For breakfast, I start with a metronidazole tablet. (I really would like to strangle whoever came up with this formulation. How hard can it be to put on a little coating so it doesn't taste like Bitrex the minute it enters your mouth?) Then, Kathleen hooks my PICC line up so I can mainline some premium vancomycin for the next hour and a half. Lunch is light, but disgusting--another metronidazole. In the evening, I get an appetizer of IV ceftriaxone and another hit of vancomycin. Dessert is another metronidazole.
The technique of antibiotic choice in serious infection is to start by covering all likely pathogens until cultures can give you a more precise diagnosis. The menu is not exactly what was started in the hospital. Instead of ceftriaxone, I was originally on ciprofloxacin, but that made me a little hypomanic (a little happier than is good for me, but not over-the-top) and gave me nightmares filled with people who had a strange and disgusting disease that caused them to be completely covered (including their eyes) in black, lint-like hair and shrink to the size of dolls. They chased me around a haunted house begging me to cure them even though I couldn't help them and could catch the disease myself. For that, and, I surmise, because my cultures are not growing Pseudomonas**, I was switched to ceftriaxone.
I hope that further cultural developments, so to speak, will allow more narrowing of my regimen, specifically, I would love to get rid of the metronidazole. I am afraid that the vancomycin infusions are here to stay for at least five more weeks.
In other news, I inadvertently freaked my parents yesterday. I called to brag about what B's teacher had told me and Kathleen during our parent-teacher conference. My father answered. When I told him to put Mom on so I could tell them both about 'something', he practically wet himself thinking it was going to be bad news about pathology. The excitement of parenthood never ends.
*I stole that phrase from a high school classmate of my mother's. She was reciting the poem Tintern Abbey, by William Wordsworth. She stumbled over the line, "The dreary intercourse of daily life, Shall e'er prevail against us, or disturb. Our chearful faith that all which we behold," and created comedy gold.
**If Pseudomonas is bad, is Monas worse? I checked. The etymology was apparently not spelled out when the term was coined, so I can only speculate. Monas is a type of amoeba which bears no obvious resemblance to Pseudomonas and is not particularly pathogenic. The etymology of Monas may be from the Greek Monas, meaning 'unit', or may derive from Monad, which is an old way to refer to any single-cell organism or to Adolf Hitler. If this last is the case, I can say with certainty that a fake Hitler is less virulent that a real one.
Sunday, April 1, 2012
Pathology!
Yup! They called me today, on a Sunday, no less, to announce the identity of the mysterious entity from the middle of my head. It's a Dick Cheney Homunculus! That's how they reproduce.
With thousands of siblings at a time, the microscopic, agamogenetic Dick Cheney larva exits a specialized orifice in the parent and becomes airborne. Inhaled by a susceptible host, it sheds its calyx and pupates in the host's clivus. There it will grow for fifteen months. Then, depending on the time of year, it will eventually either burst full grown from the head like a neocon, sex-changed, foul-mouthed Athena, or it will possess the host's body. The primary symptoms of the latter are the acquisition of a fake Texas accent (particularly in Yankee Brahmin) and the irresistible urge to start wars for no good reason.
Made you look! Final pathology won't be back for another week-and-a-half or so.
Happy April 1st.
With thousands of siblings at a time, the microscopic, agamogenetic Dick Cheney larva exits a specialized orifice in the parent and becomes airborne. Inhaled by a susceptible host, it sheds its calyx and pupates in the host's clivus. There it will grow for fifteen months. Then, depending on the time of year, it will eventually either burst full grown from the head like a neocon, sex-changed, foul-mouthed Athena, or it will possess the host's body. The primary symptoms of the latter are the acquisition of a fake Texas accent (particularly in Yankee Brahmin) and the irresistible urge to start wars for no good reason.
Made you look! Final pathology won't be back for another week-and-a-half or so.
Happy April 1st.
Saturday, March 31, 2012
The Seven Minute Itch
I'm home now, and home is where the heart is. It is also a favored hangout of the pancreas.
Meanwhile, I had an adventure in medical error. The other day, in the hospital, I noticed my head was itching. At first it was mild. I looked for flakes of dandruff. Soon, it was maddening. Then, my whole body began to itch. "Aha!" I thought, "I remember this!" I had a very mild form of red man syndrome. The same thing had happened to me 6 years ago.
Contrary to what you might think, red man syndrome does not involve a bunch of white people showing up with pox-laden blankets and taking all of your land. It's a drug reaction to the antibiotic vancomycin. In severe cases, the patient turns bright red, and the skin starts to blister. It's quite unflattering. It's also painful.
I get the mild form of red man syndrome, which is merely annoying. The treatment (or prevention) is easy. You slow down the drip of vancomycin and/or take an first-generation antihistamine like diphenhydramine (aka Benadryl). Somehow, my adverse drug reaction had not entered the medical record, even though it had happened before at the same hospital. I called my nurse and asked her to give me some diphenhydramine and slow down the drip, and my itch went away. The rest of the doses were changed accordingly.
Yesterday, as I prepared to leave, the visiting nurse company representative came by. K and I made sure she knew about my reaction to vancomycin so that my home regimen could be adjusted. However, last night, when the nurse came by our house, we discovered that the vancomycin was to be given over 1 hour (the usual speed) instead of longer. Neither she, nor the pharmacy that had packaged the vancomycin, had been told about my red man syndrome. Luckily, as we discovered, I can tolerate the stuff at regular speed as long as I take my diphenhydramine in advance, and the diphenhydramine does not make me sleepy anymore.
It's a little frightening that a potentially serious adverse drug reaction could escape notice in such a top-flight hospital.
My take-away from this, though, is that it does not matter whether you are at the best hospital with the best doctors and nurses, etc. Information falls through the cracks. The visiting nurse rep may have forgotten what we told her because she slipped on a banana peel as she walked out the door. The nurse who knew about my adverse drug reaction never told the doctor, perhaps, because she may have been distracted by acute flatulence. I'm speculating here, but the bottom line is that no one in the medical system has as much time or attention to spend on your case as you and your family do. You are the last defense against medical error.
Meanwhile, I had an adventure in medical error. The other day, in the hospital, I noticed my head was itching. At first it was mild. I looked for flakes of dandruff. Soon, it was maddening. Then, my whole body began to itch. "Aha!" I thought, "I remember this!" I had a very mild form of red man syndrome. The same thing had happened to me 6 years ago.
Contrary to what you might think, red man syndrome does not involve a bunch of white people showing up with pox-laden blankets and taking all of your land. It's a drug reaction to the antibiotic vancomycin. In severe cases, the patient turns bright red, and the skin starts to blister. It's quite unflattering. It's also painful.
I get the mild form of red man syndrome, which is merely annoying. The treatment (or prevention) is easy. You slow down the drip of vancomycin and/or take an first-generation antihistamine like diphenhydramine (aka Benadryl). Somehow, my adverse drug reaction had not entered the medical record, even though it had happened before at the same hospital. I called my nurse and asked her to give me some diphenhydramine and slow down the drip, and my itch went away. The rest of the doses were changed accordingly.
Yesterday, as I prepared to leave, the visiting nurse company representative came by. K and I made sure she knew about my reaction to vancomycin so that my home regimen could be adjusted. However, last night, when the nurse came by our house, we discovered that the vancomycin was to be given over 1 hour (the usual speed) instead of longer. Neither she, nor the pharmacy that had packaged the vancomycin, had been told about my red man syndrome. Luckily, as we discovered, I can tolerate the stuff at regular speed as long as I take my diphenhydramine in advance, and the diphenhydramine does not make me sleepy anymore.
It's a little frightening that a potentially serious adverse drug reaction could escape notice in such a top-flight hospital.
My take-away from this, though, is that it does not matter whether you are at the best hospital with the best doctors and nurses, etc. Information falls through the cracks. The visiting nurse rep may have forgotten what we told her because she slipped on a banana peel as she walked out the door. The nurse who knew about my adverse drug reaction never told the doctor, perhaps, because she may have been distracted by acute flatulence. I'm speculating here, but the bottom line is that no one in the medical system has as much time or attention to spend on your case as you and your family do. You are the last defense against medical error.
Friday, March 30, 2012
PICC Me a Winner! and Make Love, Not Warfarin!
The good news is, I'm going home this afternoon! The not-as-good-but-could-be-a-lot-worse news is, I had to get a PICC line.
PICC stands for Peripherally Inserted Ca-Ca (or Central Catheter, but whatever). This morning, Sharon and Viviana, PICCers extraordinaire, waltzed into my room with their handy-dandy ultrasound. They sonogrammed my right upper arm and picked a vein, painted me with blue antiseptic (making me look a bit like a Pict), and poked me to place a PICC.
Afterwards, I was disappointed to learn that I got a down-market PICC. Did I get a triple lumen (the lumen is the hollow part of any tube) or even a double lumen? No! I got just one lumen! And did I get a "Power-PICC"? No. I don't know what a Power-PICC is, but I deserve one! On the bright side, mine is 42 cm long.
So, you may be asking, why PICC me? Because I'm getting at least 6 weeks of home IV antibiotics. I have a whole garden of bugs growing out of that booger. We won't know what the main problem was until the bone sample has soaked in the special blend of herbs and spices for a week or two. The leading candidate, at this point, is good-old radiation necrosis with a heap of bacteria on top. Disgusting never sounded so good. There is still a small chance that they will find a cancer at the center of this thing, but I will ignore that possibility for now.
A little digression on warfarin (a.k.a. Coumadin, a.k.a. rat poison--that's not a joke)
I was interested to find out from a friend in the neurology mafia that giant mutant boogers (a.k.a. skull-base osteomyelitis) may cause the same kind of stroke I had. For this, and other reasons, my excellent primary care doc (henceforth to be known as Dr. Mr. Whipple, because he resembles Mr. Whipple) does not want to put me on warfarin. I cannot tell you how happy this makes me.
Warfarin is one of the oldest drugs in the pharmacy. It is, in fact, rat poison. If you lace rat chow with warfarin, the rats will bleed to death. However, at lower concentrations, it is an incredibly useful drug and has save hundreds of thousands, if not millions of lives. But it is also a giant pain in the hiney. It interacts with all sorts of foods and drugs. You need blood tests every week to month to make sure the dose doesn't need adjusting. There is always the lurking danger of a catastrophic bleed. Nevertheless, if you have had a pulmonary embolus, deep vein thrombosis, or certain kinds of stroke, there is no substitute. There are some substitutes just coming on line for people with strokes from atrial fibrillation, but I am not even sure they are as great as their publicity.
So, if Dr. Mr. Whipple, in consultation with some of the best stroke folks in the business, had said, Tumoriffic Tom, you need warfarin, I would have taken it. But he didn't. I'll just be on aspirin. (Unless there is another stroke, but we'll cross that bridge. . .)
PICC stands for Peripherally Inserted Ca-Ca (or Central Catheter, but whatever). This morning, Sharon and Viviana, PICCers extraordinaire, waltzed into my room with their handy-dandy ultrasound. They sonogrammed my right upper arm and picked a vein, painted me with blue antiseptic (making me look a bit like a Pict), and poked me to place a PICC.
Afterwards, I was disappointed to learn that I got a down-market PICC. Did I get a triple lumen (the lumen is the hollow part of any tube) or even a double lumen? No! I got just one lumen! And did I get a "Power-PICC"? No. I don't know what a Power-PICC is, but I deserve one! On the bright side, mine is 42 cm long.
So, you may be asking, why PICC me? Because I'm getting at least 6 weeks of home IV antibiotics. I have a whole garden of bugs growing out of that booger. We won't know what the main problem was until the bone sample has soaked in the special blend of herbs and spices for a week or two. The leading candidate, at this point, is good-old radiation necrosis with a heap of bacteria on top. Disgusting never sounded so good. There is still a small chance that they will find a cancer at the center of this thing, but I will ignore that possibility for now.
A little digression on warfarin (a.k.a. Coumadin, a.k.a. rat poison--that's not a joke)
I was interested to find out from a friend in the neurology mafia that giant mutant boogers (a.k.a. skull-base osteomyelitis) may cause the same kind of stroke I had. For this, and other reasons, my excellent primary care doc (henceforth to be known as Dr. Mr. Whipple, because he resembles Mr. Whipple) does not want to put me on warfarin. I cannot tell you how happy this makes me.
Warfarin is one of the oldest drugs in the pharmacy. It is, in fact, rat poison. If you lace rat chow with warfarin, the rats will bleed to death. However, at lower concentrations, it is an incredibly useful drug and has save hundreds of thousands, if not millions of lives. But it is also a giant pain in the hiney. It interacts with all sorts of foods and drugs. You need blood tests every week to month to make sure the dose doesn't need adjusting. There is always the lurking danger of a catastrophic bleed. Nevertheless, if you have had a pulmonary embolus, deep vein thrombosis, or certain kinds of stroke, there is no substitute. There are some substitutes just coming on line for people with strokes from atrial fibrillation, but I am not even sure they are as great as their publicity.
So, if Dr. Mr. Whipple, in consultation with some of the best stroke folks in the business, had said, Tumoriffic Tom, you need warfarin, I would have taken it. But he didn't. I'll just be on aspirin. (Unless there is another stroke, but we'll cross that bridge. . .)
Thursday, March 29, 2012
The Morning After
K reminded me that, as I was waking up yesterday, I turned to the nurse and said, "where are my breast implants?" I then clarified that "It's not that I wanted to be a woman. I just wanted breasts!"
Meanwhile, I'm sitting on the 10th floor of Ben and Jerry's Hospital getting IV antibiotics and waiting for the infectious disease specialist to come by. I expect to go home this afternoon. I never thought I would be so happy to have a mere skull base osteomyelitis. (That's assuming the pathologists don't find anything that was not initially obvious. In any case we'll know in a week.)
Meanwhile, I'm sitting on the 10th floor of Ben and Jerry's Hospital getting IV antibiotics and waiting for the infectious disease specialist to come by. I expect to go home this afternoon. I never thought I would be so happy to have a mere skull base osteomyelitis. (That's assuming the pathologists don't find anything that was not initially obvious. In any case we'll know in a week.)
Wednesday, March 28, 2012
The Mutant Booger?
I'm writing from the recovery room now at Ben and Jerry's hospital. The procedure took about 3 hours. Then, I slept all afternoon, exhausted from the surgery, but also because I haven't had a decent night's sleep in the past two weeks. (Hmm. Why would that be?)
I'm actually feeling pretty good. The only thing that bothers me is that the awkward location of the IV in my left hand makes it hard to type, and also, I haven't eaten. I'm starving. Dinner is coming.
The preliminary news from pathology seems good. Weirdly good. There appears to be NO CANCER. It appears to be an infection. I'm guessing it must be an obscure slow growing bacteria, or a fungus. That may take a long course of IV antibiotics to eradicate, but usually, that beats chemo hands down.
Thinking along those lines, we still have no source for the stroke. That's actually not unusual. However, it's conceivable was caused by a mycotic embolus (small chunk of bacteria or fungi and infected tissue that breaks loose into the bloodstream and causes a stroke. (It was a roving death booger.) I won't think to hard about the implications of that until the pathologists are finished playing. Nevertheless, situation looks much better than it did this morning.
Now where is my dinner?!
I'm actually feeling pretty good. The only thing that bothers me is that the awkward location of the IV in my left hand makes it hard to type, and also, I haven't eaten. I'm starving. Dinner is coming.
The preliminary news from pathology seems good. Weirdly good. There appears to be NO CANCER. It appears to be an infection. I'm guessing it must be an obscure slow growing bacteria, or a fungus. That may take a long course of IV antibiotics to eradicate, but usually, that beats chemo hands down.
Thinking along those lines, we still have no source for the stroke. That's actually not unusual. However, it's conceivable was caused by a mycotic embolus (small chunk of bacteria or fungi and infected tissue that breaks loose into the bloodstream and causes a stroke. (It was a roving death booger.) I won't think to hard about the implications of that until the pathologists are finished playing. Nevertheless, situation looks much better than it did this morning.
Now where is my dinner?!
Surgery over, Tom doing well
Tom's surgery is over, and he is doing just fine.
Nothing is certain until the tissue is biopsied. But it appears that this mass might actually have been a bone infection rather than a malignancy!
We won't know anything for sure until the pathologists have a chance to look at all of the tissue carefully. But for now, we are all feeling cautiously optimistic and relieved.
- Kathleen
Nothing is certain until the tissue is biopsied. But it appears that this mass might actually have been a bone infection rather than a malignancy!
We won't know anything for sure until the pathologists have a chance to look at all of the tissue carefully. But for now, we are all feeling cautiously optimistic and relieved.
- Kathleen
Here We Go
Coming to you from the Ben and Jerry's surgical launching pad. The admissions waiting room is just packed with cheerful people this morning. There is a twinkle in every eye.
Sara, the nurse working for Dr Prince Clivus, already came by with consents.
And now I hear my name being called. Time to head down to pre-op.
Looks like it's showtime!
Sara, the nurse working for Dr Prince Clivus, already came by with consents.
And now I hear my name being called. Time to head down to pre-op.
Looks like it's showtime!
Tuesday, March 27, 2012
Pre-op Follies
Have any recent stress in your life?
Well, see, there's this tumor. . .
Date of last menstrual period?
Whose?
Does anyone at home depend on your care?
Yes. Ben and the cat. Also the plants.
Over the past 2 weeks, have you felt down, depressed, or hopeless?
Yes. Last week, I thought I was about to die. I'm a bit more optimistic now.
Would you like to see a social worker?
No, I'm married. But thanks. I might be able to find someone who would if you need.
* * *
Okay, now for nap. I got up way too early!
Saturday, March 24, 2012
Showtime!
It didn't take much to persuade Dr. Prince Clivus to operate sooner. Yesterday morning, his nurse called and told me the clivus scraping will be first thing in the morning, Wednesday, March 28. I thanked profusely and assured her that I will be happy to go to the back of the line next time I have a tumor.
Honestly, I feel a little sheepish about this. Did someone else's surgery get put off? I know the reason was to allow me to start stroke prevention meds as quickly as possible, but how high, really, is my stroke risk over two weeks, and how many neurosurgeries are not, in some way, urgent? It's not like this guy does boob jobs. And, did you know that Blogspot's spellchecker does not recognize 'clivus'? What a bunch of slackers!
Honestly, I feel a little sheepish about this. Did someone else's surgery get put off? I know the reason was to allow me to start stroke prevention meds as quickly as possible, but how high, really, is my stroke risk over two weeks, and how many neurosurgeries are not, in some way, urgent? It's not like this guy does boob jobs. And, did you know that Blogspot's spellchecker does not recognize 'clivus'? What a bunch of slackers!
Thursday, March 22, 2012
He likes to do it through the nose.
Hello tumor friends. I'm currently sitting in the basement of the Ben and Jerry's Hospital feeling the radioactive tracer goodness percolate through my body. ('Cause, hey, after all of the radiation I've had, a little more can't hurt!) I'm about to have a PET scan, which is not as cute and furry as it sounds. The radioactive tracer is stuck to glucose (sugar), and I haven't had anything to eat since 6am. So, the hungry cells in my body will gobble up the glucose. Cancer cells are the hungriest, so they should take the most. Then, when I go through the scanner, the cells with the most tracer will light up on the scan, and hopefully we will have a better idea of the shape of this tumor (or discover it's really a giant mutant booger).
This use of the technology is relatively new. There is variation even with tumors, and by biopsying the area that is brightest on the PET scanner, they can make sure they have selected the most malignant part. It also shows extent of tumor beyond what may be visible to MRI or the naked I.
So, now for the catching up.
1. Visit with Dr. The Jedi Master.
Dr. The Jedi Master last messed with my head in 2004 when he plucked a meningioma out from under my temporal lobe (I am told he did it while juggling four scalpels and singing the Star-Spangled Banner. This guy is a first-rate neurosurgeon.) He is no longer at Ben and Jerry's Hospital, having moved to a less hectic suburban setting at Outside Hospital.
Last week, he had stated interest in performing my biopsy himself. However, after seeing the other exciting things that have happened to me since our last encounter, he, like Dr. Mr. Rogers, said that I will be best served at Ben and Jerry's Hospital. In addition, he explained, the all-time world champion clivus cleaver, Dr. King Clivus, recently moved to Ben and Jerry's Hospital. His heir apparent, Dr. Prince Clivus (the surgeon selected by my primary care doc) should be fine for the job as long as Dr. King Clivus is around for backup and consultation.
He also went over the films with us. The approach to the Clivus is straight back through the nose. It is much simpler than the surgeries of my right maxilla/orbit or under my left temporal lobe. Things were looking less and less like 'The End of the World' and more like just another malignant tumor. Ho hum.
2. An Audience with Dr. Prince Clivus.
So, finally, yesterday afternoon, we all met Dr. Prince Clivus. He looks about 25, although he is much older than that. Still, for the first time, I will have a surgeon younger than myself. How strange is that? Anyway, he was happy to have Dr. King Clivus come along for ride.
Dr. Prince Clivus also pointed out that if you look closely enough at my MRI from September, 2010, you can see the beginnings of the current tumor. This is a sobering thought. There were radiologists and surgeons from the two best cancer centers in the Northeast pouring over that MRI looking for just such a tumor. It's only clear with 20-20 hindsight.
Dr. Prince Clivus is a champion nose-picker. He will approach the tumor endoscopicly and scoop it out like the giant mutant booger I wish it were. He predicts a 2 day hospital stay. (Then, of course, there will probably some chemo and radiation, but this is all sounding relatively tame compared to my last adventure.)
The next step would be the PET scan.
3. Back to the Present
So now I have discovered, after talking to Dr. Prince Clivus' nurse, that he is booked for the next two weeks. This wouldn't be a problem except for the annoying little issue of the strokes.
I have now had two strokes. Even I have to admit that it's time for me to go on an anticoagulant (blood thinner). I am in serious jeopardy of having a third, and it could be much less fun than the first too. However, they have to identify the tumor first, because it might be the type of tumor that hemorrhages on anticoagulants. That would be very messy and might stain my ties.
Dr. Mr. Rogers and Dr. The Jedi Master both talked about getting the surgery done in the next two to five days so that I can be protected from another stroke as soon as possible. I've asked if he can find a way to squeeze me in sooner. We shall see. Meanwhile, I'm staying up way too late.
This use of the technology is relatively new. There is variation even with tumors, and by biopsying the area that is brightest on the PET scanner, they can make sure they have selected the most malignant part. It also shows extent of tumor beyond what may be visible to MRI or the naked I.
So, now for the catching up.
1. Visit with Dr. The Jedi Master.
Dr. The Jedi Master last messed with my head in 2004 when he plucked a meningioma out from under my temporal lobe (I am told he did it while juggling four scalpels and singing the Star-Spangled Banner. This guy is a first-rate neurosurgeon.) He is no longer at Ben and Jerry's Hospital, having moved to a less hectic suburban setting at Outside Hospital.
Last week, he had stated interest in performing my biopsy himself. However, after seeing the other exciting things that have happened to me since our last encounter, he, like Dr. Mr. Rogers, said that I will be best served at Ben and Jerry's Hospital. In addition, he explained, the all-time world champion clivus cleaver, Dr. King Clivus, recently moved to Ben and Jerry's Hospital. His heir apparent, Dr. Prince Clivus (the surgeon selected by my primary care doc) should be fine for the job as long as Dr. King Clivus is around for backup and consultation.
He also went over the films with us. The approach to the Clivus is straight back through the nose. It is much simpler than the surgeries of my right maxilla/orbit or under my left temporal lobe. Things were looking less and less like 'The End of the World' and more like just another malignant tumor. Ho hum.
2. An Audience with Dr. Prince Clivus.
So, finally, yesterday afternoon, we all met Dr. Prince Clivus. He looks about 25, although he is much older than that. Still, for the first time, I will have a surgeon younger than myself. How strange is that? Anyway, he was happy to have Dr. King Clivus come along for ride.
Dr. Prince Clivus also pointed out that if you look closely enough at my MRI from September, 2010, you can see the beginnings of the current tumor. This is a sobering thought. There were radiologists and surgeons from the two best cancer centers in the Northeast pouring over that MRI looking for just such a tumor. It's only clear with 20-20 hindsight.
Dr. Prince Clivus is a champion nose-picker. He will approach the tumor endoscopicly and scoop it out like the giant mutant booger I wish it were. He predicts a 2 day hospital stay. (Then, of course, there will probably some chemo and radiation, but this is all sounding relatively tame compared to my last adventure.)
The next step would be the PET scan.
3. Back to the Present
So now I have discovered, after talking to Dr. Prince Clivus' nurse, that he is booked for the next two weeks. This wouldn't be a problem except for the annoying little issue of the strokes.
I have now had two strokes. Even I have to admit that it's time for me to go on an anticoagulant (blood thinner). I am in serious jeopardy of having a third, and it could be much less fun than the first too. However, they have to identify the tumor first, because it might be the type of tumor that hemorrhages on anticoagulants. That would be very messy and might stain my ties.
Dr. Mr. Rogers and Dr. The Jedi Master both talked about getting the surgery done in the next two to five days so that I can be protected from another stroke as soon as possible. I've asked if he can find a way to squeeze me in sooner. We shall see. Meanwhile, I'm staying up way too late.
Wednesday, March 21, 2012
Can you say 'clivus', boys and girls? I knew you could.
Mostly wrote this yesterday and this morning. I'll update you on today's visits ASAP.
Well, after a day trip to the Big Fruit, accompanied by Kathleen and the Medical Mafia*, everyone feels a lot better, even Clivus. Dr. Mr. Rogers was a prince as ever. He entered the room and gave me a hug. Then put on his cardigan and exchanged his shoes for slippers as usual. He cautioned that you can't resolve the issue 'til you biopsy the tissue. However, from the look of things, this could be a lot worse.
Let's digress so I can explain what 'a lot worse' means and why I have been 'having a cow' for the past week. Clivus lives in a potentially nasty neighborhood, and it ain't The Neighborhood of Make Believe.
Upstairs is the sella turcica ('Turkish saddle'), wherein sits the pituitary gland ('Turkish butt'). With pills, you can live without the pituitary, though if you happen to bleed into that area, you can die quickly. Still, not a terrible neighbor. Up front is the nasopharynx, a good neighbor, if a bit messy. What had me wetting my pants were the ones in back. There are the meninges (the brain's Saran wrap), which, when disturbed, can hurt like a Reggie Roby kick in the bojangles. Most worrisome of all is the pons, named after Dr. Arthur Ponzarelli. Mess with the Pons, and you get Locked-in Syndrome. All you can ever move for the rest of your life is your eyes. I'm a bad enough dancer as it is.
Anyhoo, he pointed out that the tumor is in the anterior side of the clivus (i.e. next to the nasopharynx), not the posterior (i.e. impending horrible pain, disability and death). Also, it does not 'light up' much on the film, meaning it is not very aggressive. There is still a (very) small chance that it is not malignant. It could be a weird infection. (I'm still rooting for a mutant booger!)
Finally, with grace and professionalism, he told us that although he would gladly clear the schedule and put me in an operating room by Friday, it was entirely reasonable and safe for me to get the procedure closer to home as recommended by my primary care doc, at Ben and Jerry's Hospital (See Glossary: http://www.tumoriffic.org/LLC.htm). They have skull base surgeons second to none as well as most of my records and hordes of MDs from every specialty that a complicated guy like me could ever need. F'in' Famous will stay connected with my case and collaborate on the plan as information becomes available.
The man is a virtuoso neurosurgeon and a mensch.
*My parents are both physicians. Every time one of my tumors pops up, they call all their friends to find out who is a good surgeon, which is a good hospital, etc. Hence, the Medical Mafia.
Well, after a day trip to the Big Fruit, accompanied by Kathleen and the Medical Mafia*, everyone feels a lot better, even Clivus. Dr. Mr. Rogers was a prince as ever. He entered the room and gave me a hug. Then put on his cardigan and exchanged his shoes for slippers as usual. He cautioned that you can't resolve the issue 'til you biopsy the tissue. However, from the look of things, this could be a lot worse.
Let's digress so I can explain what 'a lot worse' means and why I have been 'having a cow' for the past week. Clivus lives in a potentially nasty neighborhood, and it ain't The Neighborhood of Make Believe.
Upstairs is the sella turcica ('Turkish saddle'), wherein sits the pituitary gland ('Turkish butt'). With pills, you can live without the pituitary, though if you happen to bleed into that area, you can die quickly. Still, not a terrible neighbor. Up front is the nasopharynx, a good neighbor, if a bit messy. What had me wetting my pants were the ones in back. There are the meninges (the brain's Saran wrap), which, when disturbed, can hurt like a Reggie Roby kick in the bojangles. Most worrisome of all is the pons, named after Dr. Arthur Ponzarelli. Mess with the Pons, and you get Locked-in Syndrome. All you can ever move for the rest of your life is your eyes. I'm a bad enough dancer as it is.
Anyhoo, he pointed out that the tumor is in the anterior side of the clivus (i.e. next to the nasopharynx), not the posterior (i.e. impending horrible pain, disability and death). Also, it does not 'light up' much on the film, meaning it is not very aggressive. There is still a (very) small chance that it is not malignant. It could be a weird infection. (I'm still rooting for a mutant booger!)
Finally, with grace and professionalism, he told us that although he would gladly clear the schedule and put me in an operating room by Friday, it was entirely reasonable and safe for me to get the procedure closer to home as recommended by my primary care doc, at Ben and Jerry's Hospital (See Glossary: http://www.tumoriffic.org/LLC.htm). They have skull base surgeons second to none as well as most of my records and hordes of MDs from every specialty that a complicated guy like me could ever need. F'in' Famous will stay connected with my case and collaborate on the plan as information becomes available.
The man is a virtuoso neurosurgeon and a mensch.
*My parents are both physicians. Every time one of my tumors pops up, they call all their friends to find out who is a good surgeon, which is a good hospital, etc. Hence, the Medical Mafia.
Tuesday, March 20, 2012
Taking the Acela to Mr. Roger's Neighborhood
Well, it's off to the Big Fruit to visit F'in' Famous Cancer Hospital and my first candidate for clivus cleaver, Dr. Mr. Rogers. (See the glossary page in the original Tumoriffic!: http://www.tumoriffic.org/LLC.htm.)
Mr. Rogers operated on me twice in 2005 and defies all surgeon stereotypes. He is warm, soft-spoken, and modest. He is also a top flight surgeon at a top flight hospital. Once, when he had interrupted his off-call Sunday to rush in and repair my leaky meninges (http://tumoriffic.org/Part%20II%20chapter%203.htm), Kathleen asked him what he had been doing that day. He had been guiding blind runners in a half-marathon. When I later thanked him, he demurred, insisting that the leak in the meninges was probably his fault in the first place. This is a man whose farts don't stink.
Mr. Rogers operated on me twice in 2005 and defies all surgeon stereotypes. He is warm, soft-spoken, and modest. He is also a top flight surgeon at a top flight hospital. Once, when he had interrupted his off-call Sunday to rush in and repair my leaky meninges (http://tumoriffic.org/Part%20II%20chapter%203.htm), Kathleen asked him what he had been doing that day. He had been guiding blind runners in a half-marathon. When I later thanked him, he demurred, insisting that the leak in the meninges was probably his fault in the first place. This is a man whose farts don't stink.
Sunday, March 18, 2012
Tumoriffic! Moves to the Unused Doctor Garvey's Health Blog
Tumor fans, after a 6 year hiatus (or 4 and a half, depending on how you count), it is now time for
Since Wednesday, March 14, I have been posting my exciting news on Facebook, but I realize that has left out some of my most loyal tumor fans. I will now repost what news I have had so far, and from now on, I will use both this blog and Facebook.
For those of you who need to review, the story of my earlier adventures in Tumorland can be found at Tumoriffic.org. (I won't add to that site since it was written in a program that is no longer available, and I am too lazy to redo it.)
Tumoriffic!, Part IV
Chapter 1: The Fifth Tumor?!?!
Since Wednesday, March 14, I have been posting my exciting news on Facebook, but I realize that has left out some of my most loyal tumor fans. I will now repost what news I have had so far, and from now on, I will use both this blog and Facebook.
For those of you who need to review, the story of my earlier adventures in Tumorland can be found at Tumoriffic.org. (I won't add to that site since it was written in a program that is no longer available, and I am too lazy to redo it.)
March 12, 2012: Taking a Spin on the Yorktown Express. . .
March 14, 2012:
HIPAA SCHMIPAA!
I wrote this some time in October and never got around to publishing. It was in Drafts. (Also revised on March 31, 2012.)
This morning, one of my patients urgently needed to go to a particular outpatient program. He had called them and left a message. They did not call him back. So I called them. I spoke to an administrative assistant. She told me the intake supervisor would call when she came in. She called back in the mid-afternoon. This genius told my assistant that because of HIPAA, she could not allow us to tell her about the patient until she had the patient's explicit permission. The patient could not be reached before the facility closed for the day, so my urgent case is stalled for the weekend.
The Health Insurance Portability and Accountability Act of 1996 is all that remains of Bill Clinton's efforts at healthcare payment reform. It was supposed to facilitate the exchange of medical records between providers. There are many different pieces of this law, some of which may be useful, but the word 'HIPAA' makes doctors cringe mostly because of a part of the ironically-named Administrative Simplification [sic] Provisions.
Administrative Simplification [sic] Provisions are supposed to facilitate communications by standardizing requirements for patient consent for disclosure of confidential information. For me, who is among the few lawyer/doctors, they actually seem like common sense. However, because health professionals don't think like lawyers and lawyers don't think like health professionals (I'll include administrators in this category for the purposes of this post.), the attempted 'clarification' has done nothing but obfuscate. Now, instead of 'common sense' discretion that was used in the past (highly variable and sometimes completely wrong, but very efficient), health professionals face a wall of legalistic definitions and procedures. A lawyer will happily dive in and parse the language. A health professional will curl up in a terrified ball and moan, haunted by visions of vicious litigators.
The case in point is an excellent illustration of the problem. The intake supervisor was completely clueless. HIPAA does not prohibit a health professional from accepting information from anybody. (Nor, for that matter, does it prohibit a health professional from giving the patient their own information, another misinterpretation I have encountered.) But HIPAA is summarized for us once during orientation, and the only thing most people seem to remember is that the boogie monster/lawyer is going to eat them if they share information.
Thus, the default reflex, upon coming anywhere near confidential health information, is to play dead. This has clogged the medical information superhighway like LA at rush hour. It must cost the system uncounted billions of dollars and thousands of lives while professionals and clerical staff burn precious hours performing pointless protocols to avoid apparitional attorneys. HIPAA SCHMIPAA!
This morning, one of my patients urgently needed to go to a particular outpatient program. He had called them and left a message. They did not call him back. So I called them. I spoke to an administrative assistant. She told me the intake supervisor would call when she came in. She called back in the mid-afternoon. This genius told my assistant that because of HIPAA, she could not allow us to tell her about the patient until she had the patient's explicit permission. The patient could not be reached before the facility closed for the day, so my urgent case is stalled for the weekend.
The Health Insurance Portability and Accountability Act of 1996 is all that remains of Bill Clinton's efforts at healthcare payment reform. It was supposed to facilitate the exchange of medical records between providers. There are many different pieces of this law, some of which may be useful, but the word 'HIPAA' makes doctors cringe mostly because of a part of the ironically-named Administrative Simplification [sic] Provisions.
Administrative Simplification [sic] Provisions are supposed to facilitate communications by standardizing requirements for patient consent for disclosure of confidential information. For me, who is among the few lawyer/doctors, they actually seem like common sense. However, because health professionals don't think like lawyers and lawyers don't think like health professionals (I'll include administrators in this category for the purposes of this post.), the attempted 'clarification' has done nothing but obfuscate. Now, instead of 'common sense' discretion that was used in the past (highly variable and sometimes completely wrong, but very efficient), health professionals face a wall of legalistic definitions and procedures. A lawyer will happily dive in and parse the language. A health professional will curl up in a terrified ball and moan, haunted by visions of vicious litigators.
The case in point is an excellent illustration of the problem. The intake supervisor was completely clueless. HIPAA does not prohibit a health professional from accepting information from anybody. (Nor, for that matter, does it prohibit a health professional from giving the patient their own information, another misinterpretation I have encountered.) But HIPAA is summarized for us once during orientation, and the only thing most people seem to remember is that the boogie monster/lawyer is going to eat them if they share information.
Thus, the default reflex, upon coming anywhere near confidential health information, is to play dead. This has clogged the medical information superhighway like LA at rush hour. It must cost the system uncounted billions of dollars and thousands of lives while professionals and clerical staff burn precious hours performing pointless protocols to avoid apparitional attorneys. HIPAA SCHMIPAA!
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