Unknown Unknowns

Yesterday, K* and I saw my local doctors, infectious disease authority,** Dr. Pusworthy (new nickname), and  Dr. Hygeia, Goddess of Otolaryngology.

First off was Dr. Pusworthy.  He is brilliant man, highly respected in his field.  He is also warm and funny.  Unfortunately, due to computer problems, he had not been able to take a good look and my nightmare MRI before the visit.  He eventually made it work while we were there.  His guess is that all of this may be infection.  (We know that there is plenty of infection, but there may be a tumor as well.)  That left K and me in a good mood.  I mean, wouldn't feel warm and fuzzy thinking about a massive infection nestling against their brain and carotid arteries?

Then, we rushed to Dr. Hygeia's office.  She had been able to review the MRI thoroughly beforehand, and surgeons read a lot of MRIs in their lifetimes.  She is one of my favorite colleagues, and we always enjoy each other's company when I come for my nasal checkup.  We did our share of gallows humor and banter this time, but her estimate was grim.

She walked us meticulously through the levels of the film,*** pointing out the new abnormalities of my abnormal face.  There were areas that are pretty certainly pus.  Of course, those are sweet music to my ears (or, actually, sweetness to my few remaining sinuses).  But there are great big areas of solid tissue.  She is virtually certain these are tumor.  Given her superior experience looking at MRIs, and the time she was able to spend looking at mine before we came in.

If it is tumor with a mere ragu of infection, there is a lot of it in the worst places.  It is hard to imagine that a surgeon would dare try to take it out.  That would leave chemo/immunotherapy and, possibly, even more radiation.  My head has been practically dumped in radioactive wastewater from a nuclear powerplant.  I shiver to think what more will do.****

But don't despair!  This is only the beginning.  As Hygeia emphasized, there is still much we do not know.  Where is Jimmy Hoffa buried?  What ever happened to Aria's dire wolf Nymeria, and can I have one of her pups?  And what happened to Drogon?  What are the knowns?  What are the known unknowns?  More importantly, what are the unknown unknowns!?!?*****

Then, she moved on to the main question: Assuming there is a tumor, what kind of tumor is it?  This can make all the difference. 

There are benign tumors that can be quite friendly in their tumory way.  They grow very slowly or not at all.  Generally, they can be cut back and watched.  That would be nice. 

It could be a tumor that that responds well to chemotherapy, like some lymphomas.  Those types of lymphomas can melt like butter with a little chemo.******

Then, there are the ones that can be temporarily slowed down, like the misdiagnosed one in 2016, when they said I had 2 years left to live.  In that case, it is conceivable that George RR Martin could get off his pimply bottom and finish the last book in his series.  The end of the TV show left me thoroughly unfulfilled.

But then, there are the types that really scare me.  Yeah.  Those.

Today, I'm going to meet my NY surgeon.  He's the one who will operate.  More updates  soon!

Be well,

Tom

*I often refer to K as my best wife ever (BWE).  No, I have not been married, before or since, but still.  From now on, in this blog, she will be K/BWE.

**Infectious diseases experts don't get no respect.   While they are the most frequently consulted of all experts in hospitals, their pay is worse than a primary care doctor.  This is because a committee made up mostly of representatives of procedure-oriented (vs intellectually-oriented) specialties gets to decide how much insurance companies pay different specialists.  So much for 'supply and demand.'

Nevertheless, infectious disease specialists might get more respect if they were called something else--like puswhisperers (thankyou Mark Crislip, MD).   Imagine an inpatient team, stymied by a compicated infection, saying, "bring in the puswhisperer!"

***I actually learned some things about different MRI techniques that will make it easier to write the correct MRI orders in the future!  Silver lining!

****How about a superpower, darnit?  I've earned it by now!

*****OK, Hygeia didn't actually say all of these things, but they are important.  I especially want to know if I can get one of Nymeria's pups!  Imagine warging into one of those!

******Just don't put them on your bread.

Not Time to Panic.  Yet.

A Long Weekend

It has been a strange weekend to a strange week.  My delightful family and our delightful family friends spent most of it on Cape Cod in gorgeous weather.  The dog was her sweet, goofy, wild self,  The food and drink were good.  I felt good.  And yet, I am walking around with this thing in me waiting, like the creature that popped out of John Hurt's abdomen in Alien.*  Except this thing is all in my head.

Part of me wonders if (or, at least, fantasizes that), when the radiologists and surgeons at FFCC look at my MRI, they'll just laugh at the excitable Boston area provincials that jump at nothing.  I haven't even been able yet to speak to any doctor who has seen this MRI.  Maybe the radiologist who wrote the report was on 'shrooms.

Another part wonders whether, if I sneeze, the whole thing will pop inside my cranium and bathe my brain in pus.  Or, maybe, it will pop if I strain too hard on the toilet.  I could go down in glory, just like Elvis.

I feel fine.  I took a good hike with Willow, and a friend, and his dog.  We hiked up and down steep, rocky hills in the woods.  I found wonderful things to photograph.  I cringe at every ordinary, little twinge in my face or head, but nothing happens.  How could there be such chaos in my head when I feel fine?  I don't get it.





* Eventually, they popped out of a lot of abdomens, actually.  I hope this isn't the beginning of something similar.

Willow doesn't get it either.

Another Fine Mess

[Warning: graphically gross stuff to follow.]

Time to place your bets!  What's inside Tom's head?  Is it Pusworld or Tumorland!  Place your bets!

Yessiree!  I am off on yet another Tumoriffic (Puseriffic?) adventure!  And no more ditzels on an MRI and deluded doctors diagnosing disastrous tumors that are just dead skull!  Nope!  This is the real thing, baby!  Hold on to your seats!

Lemme 'splain.  Last time I updated you on my health was January.  I had started taking long term amoxicillin for my chronic skull infection.  Everything was ducky.  But, a month or two later, it started.  I thought I had my usual facehole infection.*  I had the usual 'feeling under the weather,' runny nose and bad breath.**  This happens a few times a year and is not worth writing about.

Given the insane weirdness of my recent skull infections, I recently fired myself as my own doctor.  I called my local ID specialist, Dan (no clever nickname yet), and he ordered a culture.  It grew a bug called Stenotrophomonas maltophilia, known as 'Stenny,' to friends.***  I took 10 days of Bactrim and felt better.  But that didn't last.

Over a couple of weeks, I began to find it difficult to breath through my nose, especially on the right side.  One of the few advantages of having a facehole is that I rarely get a very stuffy nose, so this was odd.  It was also disconcerting, because this is how the first chapter of this whole tumor saga started in 1981.  Back then, a tumor blocked my right nostril. ****  So, a little déjà vu.

So I called Hygeia, Goddess of Otolaryngology, and she ordered an MRI of my head.  That took place two days ago.  K and I then waited anxiously overnight.  Yesterday, in the early afternoon, my cell phone rang.  It was the physician's assistant from Hygeia's office.  Hygeia was away, but the PA said that I had something suspicious, and I would need a biopsy—to say the least.  It was the War and Peace of radiology reports.

The radiologist lovingly described every hidden detail of the strange thing that is my head.  It's pretty ugly in there.  Of course, there are all of the scars from dozens of surgeries.  Then there are some old strokes.  There are the remains of a small bleed in my brain I must have had at some point and never bothered to notice, and so on.  But the new stuff is what's really exciting.

The area behind my nose (my poor, abused nasopharynx) has a mass in it.  There is also proteinaceous goo (pus, I am sure).  The mass extends into my brain case where it comes up against the side of my brain.  It has also invaded the cavernous sinus and is wrapped around one of my carotid arteries.  (The cavernous sinus is not a sinus of air like nasal sinuses, but of blood.  It's really a huge vein that drains the brain.)*****  I could go into more detail, but what I have said is gross and scary enough.

So, is it yet another cancer, or is it a giant zit inside my head?  Or both?  If it's a zit, I should be able to take a knitting needle, stick it up my nose, and pop it.  (See?  Told you this was going to be gross.)

Yet here I sit on a lovely Memorial Day weekend on Cape Cod hanging out with friends and family.  My challenge for the day is to wear out the dog so much that she won't gnaw on everything in the house when we go out to dinner.  I really feel fine except for the stuffy/runny nose and an annoying nasal voice.

PS: Mike Glickman, MD is a complete mensch.  He is an infectious diseases expert at F'in' Famous Cancer Center (FFCC) in NYC.  (Incidentally, we briefly knew each other as children.)  I had sent messages to my FFCC docs last night as K drove us to Cape Cod.  He called this morning to express concern and to find out if there was anything he could do.  I will be seeing him next week some time.




* Where most people have sinuses, after all my surgeries, I now have one giant facehole under my right cheek.

** Also known as death breath.  Interestingly, the phrase, 'death breath' originated in WWI as a name for mustard gas.

Shout out to Erin, my excellent medical assistant, who, without cringing, can tell me, "Dr. Tumor, I can smell your breath from here.  Go rinse your nose."  I either have to do that or hold my breath for entire patient visits.

*** Stenny is an up and coming bug we'll probably hear more about in the future.  He likes to hang around in devices such as urinary catheters.  He can cause things like urinary tract infections, and, if you happen to choke on said urinary catheter, pneumonias.

Stenny is a highly uncooperative bacterium, insensitive to nearly all antibiotics.  In my case, he is sensitive to Bactrim, which is nice.

Disappointingly, Stenny is what is known as a nonfermentative bacterium, which means you can't make beer with him.

**** My First Tumor, a toy from Milton Bradley for ages 11-13.

***** The cavernous sinus/carotid artery part is what really scares me.  Anybody can have a tumor/infection crawling around the inside of their skull.  But the cavernous sinus?  Around the
carotids?  How am I still alive???

Something scary is growing inside my head.