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.

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. . .)

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.)

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?!

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

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!

Pre-op Follies

I went down to Ben and Jerry's Hospital early this morning for my pre-operative appointment in preparation for tomorrow's excitement. I was given a pre-op questionnaire and sat down in the waiting room. I was there for a while, and I got bored, so I decided to have a little fun and spice up my answers

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!

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!

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.

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.

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.

3/15/12: Clash of the Surgeons 2

Back to that scary thingy behind my nose/mouth. Kathleen and I spent yesterday running around getting various radiology studies. It does not look like radiation necrosis. (Goodbye, whimsical notion. We hardly knew ye.) I could spout my semi-informed speculations on what it might be, but that would freak everyone out. There will be time for that later. Next Tuesday and Wednesday, we get down to business. I will see three (three!) eminent neurosurgeons, each of whom will present their plan. Then, they'll duke it out in an Xtreme cage match, and the one left standing can biopsy my clivus. Stay tuned!

 PS: This is the final catch-up post on the Tumoriffic! blog. You are now up to date!

3/14/12: A Tumoriffic Thought

It's not time to panic? If not now, then when?

3/14/12: A Tumoriffic Thought

From Facebook, March 14, 2012,

Some people say everything happens for a reason. But suppose that's true. Maybe the reason is that God hates you.

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  

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. . .

Reporting from brigham & womens ER. Instant transformation from doctor to patient this morning. One minute, I'm talking to a 92 year old about her orthostatic hypotension, the next, the room is spinning, my hand is clutching my mouth, and I'm on the express train to yorktown.(1)

Yippee!

(Before I made it out the door, breakfast was spraying out my nose and through my fingers. So much for bedside manner.) 

I ran into my office and began to vomit enthusiastically into my trashcan.  For some reason, my colleague down the hall, Artemis, became concerned.  In short order, she called K, and K put her foot down and called an ambulance.  Continuing to vomit and spin, I thought this was excessive.  I just wanted to get back to work, and of course, this should stop any minute.  But I went along with it.

 That was not my favorite ambulance ride.  Spinning and puking all the way to Neighborhood Hospital.  They plopped me into the emergency room.  My good pal, ER Guy gave me some ondansetron for my nausea and some meclizine for my vertigo, and I was right as rain and ready to go back to work.  "Oh, no you don't," said K.  "Oh, no you don't," said ER Guy.  "This is not just a stomach bug.  I think something bad might be happening.  You need to go somewhere with fancier stuff. 

And so, after a much more pleasant ambulance ride, I found myself back at Ben and Jerry's Hospital, where I had had many a tumoriffic adventure.  There, I had an MRI.  The MRI showed an itty-bitty. stroke.  However, my symptoms were gone, and we already knew the reason for the stroke--ridiculous amount of radiation.  Nothing to be done.  I was already on the stroke prevention medicine.  I was doing all that could be done.  Ho, hum.  We went home that night.

March 14, 2012: . . .Which Somehow Ends Up in Tumorland

Holeeeeeeey spit! That dizzy spell signaled my return to Tumorland!

My primary care doc called yesterday to tell me that the MRI done in the ER 2 days ago showed a 'small' mass in my clivus. The clivus is not the scientific name for some naughty part, nor is it the name of a minor character from the Beverly Hillbillies. It's a bone that sits between the back of my nose and, as Woody Allen said, "my second favorite organ"--my brain. Ruh roh. More updates to follow.

 

(1)  Remember when, as a small child you would spin around to feel dizzy?  That kind of dizzy feeling, like the room is spinning around you, is vertigo.  That's what I had.  For some reason, that's less enjoyable as an adult.  Incidentally, the other kind of dizziness is called 'lightheadedness.'  That's a kind of floaty feeling like you might get if you haven't eaten all day or maybe chugged too much cough syrup.  The difference is very important to your doctor.

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!