October Update, Part 2: Would They Please Shut Up About That?

Announcement: The night before I wrote this blog post, my wife, my parents, and my best friend told me what I already knew but needed to hear someone else say: I cannot go back to work yet. 

The neurological effects of the posaconazole have decreased sharply since the dose was reduced from 300 mg/day to 200 mg/day.  I am no longer stupid.  But as my family and my friend pointed out to me, I am still quite forgetful.  Although an absent-minded professor may be harmless, you do not want an absent-minded doctor.  

How soon I can stop the posaconazole (assuming that the med is what is causing this) and return to work may depend on an MRI in late November.  There is always a chance that I never will be able to go back. I hope it is a small one.

At the very wise suggestion of my able assistant "Robin" (the Robin to my Batman), I have told my office to stop making appointments with me completely and to change the appointments already-made to my colleagues.  It is not fair to my patients to keep putting off their appointments.  Hopefully they will be pleasantly surprised when the appointments can be changed back.  I apologize to all of my patients.  I love you, and I miss you. 

You may now return to the blog.

Written October 1, 2019:

Did you know that the USDA allows a maximum of mouse droppings per unit of cereal?  And that it's not zero? 

So, as I happily chow down on the metaphorical Cocoa Krispies of my substantial recovery from the side effects of posaconazole, and from the blockage and schmutizification of my left ear and my nose, I cannot forget that these Cocoa Krispies are inevitably spiked with a little mouse poop.  In this case, the mouse poop is that suspected cancer I talked about a few weeks ago.

Like dinner guests who stay too late and don't get the hint, the oncology nuts refuse to just go away.  At F'in' Famous Cancer Center, they believe that there may be kind of might be sort of a cancer or future cancer brewing in there waiting to reveal itself, but if there is, it isn't clear enough yet to act on.  It may or may not be the big villain in the current drama (with yummy mold sprinkles on top), but it could be a coming attraction. (1)  Worse, the cancer freaks at the University of Steel Medical Center (where the Wicked Famous Cancer Center sent my pathology slides for a second opinion) think they see actual cancer. (2)

So the quest continues.  Do we wait and see if a cancer lies at the center of this melting mass of of fungating fungus, or do we boldly go and cut out more tissue for a definitive diagnosis right now? 

Dr. Nariz has said that he does not want to take any more tissue, because he is afraid there would be heavy bleeding, and he might even pop one of my carotid arteries (not to mention possibly nicking the lining of my brain or springing a cerebralspinal fluid leak).  I suppose he has a point.  Anyway, he is highly professional, and he says he wants all the of the other great experts to weigh in on my weird case.  Naturally, the next step was a consult with The Coach at his new lair in Lummox Mountain Hospital. (3)

So last week, K/BWE and I took Amtrak to the Big Fruit's Pencilwood station and a cab to the townhouse of old family friends who have graciously hosted us through all of these crises.  We arrived very late, so we found a wonderful, somewhat yuppified 24 hour diner (A diner with wine?  Really?).  I had an enormous omelette and chocolate milkshake. (4)  Then we went to bed.  In the morning, after a diner breakfast, we went to see Dr. Coach at the Lummox.

The big guy looked more beat up than I have ever seen him.  He was unshaven and exhausted, but his intelligence and sense of humor were intact.  He shoved a small tube up my nose, then removed the tube and booted me from the exam chair.  He lay back on it himself as if to snooze.  (He would never do this with other patients, but he knows us, and he knows that we love and admire him.  I suspect he had spent the last 48 hours doing his surgical magic and was being very, very generous to see us.  I mock surgeons sometimes, but they really can be superheroes.)  He has an extremely high opinion of my team at F'in' Famous Cancer Center.  He thinks they are doing all the right things.  He too would not out take more tissue for fear of me bleeding to death (generally considered a failure by most surgeons).  He asked, though, given the controversies about the pathology, F'in' Famous should maybe send some tissue for the Lummox Pathology Department to eat.  That's a lie.  I should say examine.

But there was one more stop I needed to make--the University of Steel Medical Center in the City of Steel.

Years ago, The Fixer had told us of a mysterious surgical team in the City of Steel that would go where others fear to tread.  He warned that he would not recommend going unless I was dying.  For now, I don't think I am dying, but I am at a pretty high risk of it, for reasons stated above and below.

Neither K/BWE nor I had ever been to the City of Steel before we flew there yesterday.  We arrived at a pleasant mid-sized airport.  After 40 minutes of highway traffic in a taxi, we crossed a bridge onto a road running by a river far below to our right, and a large man-blasted cliff to our left.  The crowns of skyscrapers were just visible above the cliff-topping trees as we passed them.  It is a city literally carved from mountains.

Yesterday night, we stayed at a Marriott Residence Inn (which, along with modern, comfortable amenities, has appalling color-smear carpets and a nauseating brown/orange/yellow color scheme on the walls) right next to a neighborhood teaming with college students, and we ate the worst Chinese food ever for dinner.  This morning, K/BWE let me sleep in and brought me Belgian waffles and eggs just as the hotel breakfast service was closing.  We left our baggage at the desk and explored the area.  It's quite pretty and includes a lovely glassed-in conservatory and botanical garden in the style of the Crystal Palace.

In the afternoon, it was time for my appointment with the last expert. An old pal of The Coach, he is on the cutting edge of otolaryngeal surgery. (5) 

We navigated the ratless maze of the University of Steel Medical Center and arrived at the proper office.  At registration, the pleasant administrative assistant handed me--wait for it--the SNOT survey (Sino-Nasal Outcome Test).  Whoever named that form has my undying admiration! A nice assistant soon brought us to an exam room and took my vitals. Then, a very reserved (he didn't laugh at ANY of my jokes!) ENT fellow entered to ask questions and to use a mini vacuum cleaner to remove the schmutz behind my nose that was obscuring the mass.  He left to brief his superior.

And then, in walked The Surgeon of Steel.  Tall and slim, he resembles a more dignified version of Bill Nye, the Science Guy.  He took the schnozoscope (actually pharyngoscope, but who cares?), slid it in, and looked at the enemy.

He wants it.  He wants more tissue to make a definitive diagnosis of cancer or not cancer, and he thinks he can take it without killing me.  He proposed something no one has proposed before--a trip to Narnia.  No.  Not that.  He proposed an angiogram.  Like the one I got for my nose last summer, it would allow him to map blood vessels--this time to the mass instead of my schnoz. (6)  Like before, he would use the angiogram to visualize the blood vessels that feed the mass, and he could release beads to block them so I wouldn't bleed out when he removed a piece of it.  Incidentally, the map created might help him avoid popping my carotid arteries (unpleasant prospect as stated above).

But what he said next made my heart sing.  If he did not find cancer on frozen section, and if he deems it safe and viable to do so (i.e., not cancer or Zod knows what), he would take out as much of the unhealthy tissue (including, I dare to hope, at least some of that dead bone?) as possible and then cover the area with healthy tissue from elsewhere in my body to cover the hole. (7)  This has been my fondest dream for nearly a decade, ever since the radiation-burned mucosa covering my bone of my skull rotted away due to radiation, letting the burnt bone itself die.  This wasteland behind my nose is the source of my notorious death breath and countless, sometimes life-threatening, infections.  This year, it allowed the fungus to invade the Holy of Holies--the brain case.  If the fungus can get there, anything can.  It terrifies me.  'Anything' could kill me, and fast.  But, maybe, just maybe, he can fix it for good, or at least for a long time.

His plan has not been finalized.  He needs to review my films and discuss it all with his partner, The Neurosurgeon of Steel.  It's a dangerous, rigorous surgery, and if they do the flap, could last well over 10 hours.  He may change his mind.  He might have something better to do with his time.  And it might be cancer, in which case, I am in a heap of trouble.  But today, it doesn't matter.  He said those magic words.  Then I said, "I love you," and the Surgeon of Steel smiled.





(1) Coming in December, The Singing Carcinoma, starring Tumoriffic Tom, K/BWE, the Professor, and some unfortunate oncologist!  Parental discretion is advised.

(2) I hate to admit this, but I didn't even know they were a thing.  Yet it turns out that the University of Steel Medical Center is one of the top 10 hospitals for cancer in the US. 

(3) If you don't remember The Coach, he was the bluff and dauntless head of the A-Team, including Dr. Fixer, the suave and kind reconstructive surgery titan, and Mr. Rogers, the deftest, sweetest neurosurgeon and human being on Earth.  They saved my life and my right eye in 2005.  (See Glossary.)  Unfortunately, the A-Team broke up when The Coach moved on to Lummox Mountain Hospital.

(4) A major advantage of having a chronic inflammatory process such as an invasive fungal infection or cancer is that you can eat like a glutton and not gain an ounce.  In fact, I have lost 20 pounds since May.  I should tell Dr. Oz about this miracle. 

(5) Get it?  'Cutting edge of surgery?'  Oh, I crack myself up!

(6) Don't get excited.  Schnoz is just Yiddish for nose.

(7) A frozen section is how surgical teams make a preliminary diagnosis.  A specimen is sent straight from the operating room to pathology where it is flash-frozen solid.  It is then sliced thinly like ultra-pretentious sandwich meat and examined under a microscope (and then sold to Subway at a premium price).  It cannot yield a final diagnosis.  That takes weeks of marinating in secret herbs and spices as well as dozens of genetic tests.  But when you have to decide with the patient still in the OR, it's all there is.

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Things may be looking up!

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