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.

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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.