Birthday Bash in the Head

Hello, everybody!  Somehow, I made it to 49 yesterday, and what an exciting life!

So, last time we caught up, I was mainlining limoncello (or liposomal amphotericin B, whatever you call it), and I was doing OK.  I was still working, I was still taking the dog on walks, and so on.  Yes, there were inconveniences, like hooking myself up to an IV every night before dinner, or like having to wear a special, waterproof sleeve to shower, and only with help from Kathleen to get it on.*  And my appetite hasn't been great.  Still, life was pretty normal.  Until last week.

Last week, I went to a conference on addiction medicine in Dallas.**  The first day was great.  It's very interesting stuff, but, by the second day, I hit a wall.  Suddenly, I was very tired, very headachy, and quite nauseated.  I became very cold, wrapping myself up like an arctic adventurer in a room full of people with short sleeves, although I did not have a fever.  All of these came in waves.  I would have some energy, and then, I would have to run to the room to go to sleep.  Luckily, K/BWE had come along and was there the whole time taking care of me.***

These were all consistent with the side effects of amphotericin B.  The label says that, in clinical trials of patients taking the drug, 40% felt like dreck, 20% felt like total dreck, 14% felt like fecal matter, and 7% wanted to die.  All part of the fun.

I limped through the rest of the conference, and we came home.  There was no way I was going back to work like this, so I am taking medical leave.  K/BWE is braving the paperwork.  I really hate doing this.  I love my patients and want to get back to them.

We called IDSA guy first thing Monday morning, and he is going to switch me to another antifungal called posaconazole as soon as it arrives at the pharmacy on special order.  That should be easier to take.  To wit, the label says that, in clinical trials, only 30% felt like dreck or total dreck, 11% never got off the toilet, but only 2% wanted to die.  Stay tuned to find out if which, if any of these things happen.  Don't worry.  I won't be too gross about it.

*                     *                     *                   

But there's more!  Like Michael Meyers in Halloween, the possibility of cancer is back.  I got a call from the ENT surgeon at F'n' Famous Cancer Center.  We had all done our best to forget this, but they had sent some tumor off for very specialized genetic tests and for a second pathology opinion at the Johns.  It seemed so unlikely, but they found mutations in six different tumor suppressor genes.  In and of themselves, they do not mean cancer, but they're quite scary, and there is a whole other set of tests pending.  Meanwhile, the pathologists at the Johns see what might be cancer cells.****  At best, this means I have the equivalent of a big, ugly colonic polyp hiding in there with all that inflammatory crude.  At worst, well--a lot worse.

Is the controversy over?  Is it cancer, or a crazy colon polyp that found its way into my head, or fungus?  We still don't know, and we won't know until I get another MRI in a month.  This is crazy way to make a diagnosis.  Each time I talk to my doctors, they each take the opportunity to say, "I have never seen anything like this."  Very reassuring.







* The sleeve (pictured below) is actually made from a refashioned elephant condom.  Male elephants donate them after the end of musk season.  Elephants are quite charitable, and they also like tax deductions.

** Dallas in July?  What a great idea!

*** Before I left, for about 5 minutes, we had contemplated having the Professor go with me instead.  We thought all I was going to need was someone to carry luggage that I couldn't with a PICC line in my arm and, maybe, to call an ambulance if I seemed to be dying.  Luckily, we thought better of it.  He's a responsible 16, but that's a lot of responsibility to put on the shoulders of such a young professor.

Also, by the way, K/BWE does work, but she is a consultant with a lot of control of her schedule, allowing her to have a very successful career while taking care of me and my disasters.

**** The Johns is yet another fabulous center for cancer treatment.  I actually went there for my original cancer in 1981.

Willow has a healthy outlook on this whole thing.

Going with the Flow

Treatment for that giant thing in my head has finally commenced.  I started amphotericin a week ago, and the experience was kind of surreal.  I got my first dose in an oncology infusion room, but, this time, I wasn't a cancer patient (at least, that's the going hypothesis).  They were a bit confused when I showed up dressed for work.  But, after they inserted the PICC line and gave me the first dose, to the office I went.

Every night since, I have gone the through the little ritual of pulling out a bag of amphotericin (which looks deliciously like Limoncello), attaching it to a tube, sterilizing the hub at the end of my PICC line with alcohol (not the nice kind that's in Limoncello), rinsing the line with dextrose solution, and then attaching the line with the amphotericin.  All of this must be done while chanting in Latin while K/BWE slowly beats a rhythm on a large drum.  The insurance would not pay for the animal sacrifice, so we skip that part.*

I expect to be on this medicine for at least 4 weeks, but that's OK.  I don't feel sick.  I see my patients.**  I do the paperwork, make my phone calls, and go home.  I go on long hikes with Willow in the woods (or at least as long as we can stand it in the heat of the summer).  Life is pretty normal.  Let's hope that thing eating the inside of my head is having a harder time of it.

* All of the ritual is what's known as 'integrative medicine,' where we incorporate traditions thousands of years old into modern medicine.

** The PICC line is in my left upper arm, so it's covered by my shirt so as to avoid awkward questions.

Here I am in full Amphotericin infusion regalia as dictated by ancient rite.  Note the amphotericin in the IV bag.  (Do not be fooled.  It is not a refreshing summertime digestif.)  Note also the dignified light-up mushroom hat and the asparagus/EKG T-shirt, both given to me by the Great John R, who was the volunteer DJ at my wedding, thus the proper person to do so--these rituals are quite exacting.  (Where does one get an asparagus EKG shirt???)

Athlete's Brain

The big diagnosis game is over.*  It was a clear win for the Infectious Diseases (ID) Docs**,  and the Oncologists have gone home licking their wounds and dreaming of my next big diagnosis.***  It's an Aspergillus fungal infection (aka, athlete's brain).

Meanwhile, there is a Pop Warner game between the Aspergillus species to determine exactly which one is infesting my head.  It has gone far into overtime, and ye olde Masson-Fontana**** stain turned out to be useless.  So we have to wait for the PCR***** results.  Knowing the species will allow my ID docs to make a very precise choice as to the right treatment.******  However, I have really had enough waiting.  I've been so restless, I almost went to the pharmacy and guzzled down all of their jock itch cream.

But, yesterday, even without the final diagnosis, Ski Buddy and IDSA Guy came up with a plan.  On Monday, I'm going to start getting an IV antifungal medication call amphotericin!*******  This means my second PICC line (long term IV) in less than a year!  Yippee!  Maybe they'll throw some kind of party for me down at interventional radiology when they put it in.

Amphotericin will hit any Aspergillus species good and hard.  They'll check an MRI in about 2 weeks, and, if the giant head mushroom has gotten noticeably smaller, they'll start me on an oral med (assuming those slouches doing the PCR have finally turned in their homework). If it hasn't gotten smaller, it's more amphoterrible for a while.  (Boooooo!)

So, making progress.  Meanwhile, I feel fine.  I have plenty of energy, and I'm going to work as usual.  I am refraining from cage fighting, because I really worry about what this thing would do if someone hit my in the head.

And my dog has learned how to hover.

* K/BWE is such a spoilsport!  She just pointed out that this game was decided on a very suspect call by the referee down in pathology.  They just found a few little aspergillus cells with a lot of yeast (No, I am not shoving raw bread up my nose.).  Yeast can't explain what is happening, and, since no one has come up with a cancer, Aspergillus is all they got.  Maybe I'm about to get a whole bunch of nasty antifungal crud just to find out there was cancer in there after all.  But that ruins the narrative.  It would be as if the guy under the mask at the end of the Scooby Doo episode didn't turn out to be the first person they had met at the spooky amusement park.  Just wrong.

** I'm not even going to speculate on what their mascot is.  I imagine it's really gross.  Ideas in the comment section are welcome.

*** I sincerely hope that doesn't happen for a very long time.

**** Don't ask.  Just think of it as a nice Italian wine.

***** PCR is not to be confused with CCR (Creedence Clearwater Revival).  Instead of an awesome band from the 1970s singing a mix of rock, blues, country, and Cajun music, PCR stands for Polymerase Chain Reaction.  It is a process that can take a tiny bit of DNA and make zillions of copies so that we can analyze it.  It's tons of fun.  (Incidentally, John Fogerty had the polyps on his vocal cords removed, and now he sounds really vanilla.)

****** Yeah, I know they said voriconazole.  I don't know where that went.

******* Known to many as 'amphoterrible' for its nasty side effects.  Luckily, I will be getting a somewhat nicer preparation than the one that earned it that reputation.

Fungus Among Us?

Greetings, tumor fans!  Still no winner, but there are 30 seconds left at the end of the 4th quarter in a 0 - 0 game, and, surprise, surprise, the Infectious Diseases team (previously favored to lose*) has the momentum.  It's at the 2 yard line, and it's first down!

The winning strategy appears to be fungus, ya know, like mushrooms.  Except, no, I am not having hallucinations (too bad), and it's probably not yeast, so I'm not making myself drunk on head beer.  It's something called asparagus.  (No, not asparagus.  Aspergillus.)

Aspergillus tends to grow in people who are immunosuppressed such as AIDS patients and cancer patients on chemotherapy.  Luckily, that's not me (at least for now), but, in my Chernobyl of a face, it's such a mess, anything can happen.  Overuse of antibiotics (or, in my case, intense, but necessary use) kills off normal** bacteria, leaving a vacancy for dangerous bacteria*** or fungus, but usually bacteria or less dangerous types of fungus.  I'm special, so, even though my immune system is OK,  all the dead bone in my head is a buffet for the Aspergillus.

Why do they think it's Aspergillus?  They can see it on the stains of the tissue, and it can do the kind of damage that they are seeing in the microscopes.  It's not growing in the cultures, but Aspergillus often does not grow in cultures.  If it does turn up eventually, that's a touchdown, but, if there is no cancer, it is the best explanation we have, so it would be a field goal, and Infectious Diseases wins the game either way.

But the Oncologists have not lost yet.  Literally, every pathologist in F'in' Famous Cancer Center has taken a stab at my slides and not found cancer, but they still have a couple of tricks up their sleeve.  They are running some genetic tests, and, as has happened before, I will be the star of Tumor Boards in at F'in' Famous Cancer Center. *****  Between these two, there is still a chance for a fumble or an interception that will be run all the way down the field for a touchdown and chemotherapy, but no one is putting any money on it.

It's so unlikely, that infectious diseases gods, Ski Buddy and IDSA Guy are considering starting me on voriconazole tomorrow, which would be nice, because, even though I feel great, I'm afraid my head will pop open any day now.  Then, they will take successive MRIs to see if the monster shrinks in response.

This is not going to be easy.  Fungal biochemistry is way more similar to ours than to plants' or bacterias'.  That means that medicines that are toxic to them are toxic to us.  Voriconazole is no exception.  This is going to be a tough course that I think will go on for months, but, at least, it's not cancer chemotherapy.******  With the proper timing and symptomatic treatments, I expect to go on about my odd life as usual.

So, go team Infectious Diseases!  Go fungus!

Be well,
T






* It looked like it was such a clear win for oncology that, when he heard what was going on, IDSA guy kind of patted me on the back and said, "nice knowing ya, dude.  Don't make any long-term vacation plans."  (No, no, no he didn't. He's a very nice guy.)

** But, let's be real.  What would be normal for my unique facehole?

***  (TRIGGER WARNING: HIGHLY SCATOLOGICAL but medically informative) Of course, unless an antibiotic is very local (like an ointment), it will kill of bacteria everywhere it goes.  I get fungal infections in my ears all the time.  K/BWE finds that really hot.

But, for those of you whose faces aren't some Mad Max, post-nuclear-armageddon hole, the bacterial die-off that is most likely to kill you is in your gut.  See, there is this bacteria called Clostridium difficile.  Known to friends as Clossy.  Clossy is the kind of guy who might show up at your dorm party (or your bowels) uninvited and hang out in a corner ogling the women and mooching your liquor.  But, once the beer pong with Kirsten Gillibrand has gone 20 rounds or so, everyone else is practically dead from alcohol poisoning (or, in this case, antibiotics), Clossy is the only one standing.

Clossy has a liver of steel, and he deals with most antibiotics the way a honey badger deals with snake venom.  Honey badger don't care, and neither does Clossy.  Free to take over the place (your gut, not your dorm room), he goes wild, and ruins the place.  He'll give you horrible stomach cramps, and explosive diarrhea.  He'll burn the whole place down with a high fever.  Clossy kills a lot of people.****  I expect to run into Clossy one of these days, since I chug antibiotics like a Supreme Court nominee chugs beer.

**** Amazingly, if the two antibiotics that may kill Clossy don't work, the only option left, and I am serious, is a stool transplant.  If you refill your gut with healthy bacteria, you can send Clossy out the back door.  What is a stool transplant?  It's as gross as you think.

***** Tumor Boards is a musical review where my surgeon and my oncologist will sing all about my tumor, and all the wisest heads in medical and surgical oncology try to make sense of the tune.

****** Cancer is just a piece of you that has gone a little nuts, so it's very hard to kill your cancer without almost killing you.

Happy 4th!