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.

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Okay, now for nap. I got up way too early!