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!

Weirdness Continues

I started writing this in the recovery room, feeling remarkably good after coming out of general anesthesia, light though it was.  It was all very quick, leaving me unharmed except a lot of packing in my nose. I can only breathe through my mouth, and I sound particularly sexy.

I'm in no pain.  One of the advantages of having had a tumor that destroyed the third branch of my right trigeminal nerve is that certain parts of my face just don't feel pain.  Also, apparently, they did not pop my dura mater, so my brain is still is its protective bath of fluid, and I didn't mess up the floor with it, which is nice for me.  This is all much better than I expected, and it gets even better.

After the recovery room, they transferred me to the 19th floor of the hospital, the deluxe floor.*  Apparently, patients who are only going to be in for one night get to stay on a luxury floor if there is a free bed.  So I'm sitting on an easy chair, feet on an ottoman, in a carpeted break room that looks like a very dignified office.  There is a big wooden desk with a globe and comfy furniture, surrounded by dark wooden bookshelves and crimson walls with a wooden running board.  A window looks out on the East River.  A few feet away, French doors open to a wood-paneled living room, and, beyond that, a small dining room for people to eat with their families.

But enough about me.  What about this story's main character--the tumor.   This morning in the OR, Dr. Nariz went in again and took a more extensive look.  Easing the schnozoscope into my right nostril.  The image appeared on a monitor next to him.  He peered at the invader and cursed quietly under his breath.**

"Get Skully,"*** he called.  A nurse went running, and alerted Dr. Skully, who whizzed in with her characteristic speed.  She saw it, and her jaw dropped.  "What IS that thing???"  The two if them  stood transfixed.  Then, they quickly took selfies with it and got back to work.

Seriously, though, neither Dr. Skully, nor Dr. Nariz recognized anything about tumor.  We won't know for sure until the pieces have been properly marinated in dyes, and the genes sequenced (if appropriate), but they did do something called a frozen section.

To do a frozen section, you take some of the specimen, and you throw it into the freezer next to the Haagen Daaz.****  Once its frozen, you slice it very thinly and look at it under a microscope.  The lack of staining with dyes limits what you can see, but, usually, a malignancy is fairly obvious.  There would be lots of chaotic, densely-packed cells with large, irregular nuclei.  Dr. Nariz expected to find something like that in some spot in this enormous mess, but, so far, it all just looks like inflammatory schmutz.  But from what?  Pathology and microbiology may have something to say in a week if they don't all resign in frustration.

Now the scary part.

When we saw him a couple of weeks ago, Dr. Nariz was pretty certain that, whatever this was, complete surgical removal was not an option.  Dr. Nariz was able to take out about 25% of the mass today, but the rest of it has weaved itself around vital structures like my right carotid artery, my right optic nerve, and my right temporal lobe, invading nothing,***** but threatening everything.******

But, clearly, Dr. Nariz has gone over it more in his head and with his colleagues.  He now says that, with an infection even with helpful antimicrobials that would help, and even in a benign tumor, anything this big in these places, might be curable only with a long, highly invasive surgery more dangerous than any I have had before, and there would be a big risk of knocking out something essential.  But, damn, it will be fun to write about it!




* The staff told me it is a new thing in all of the major hospitals in the Big Fruit.  Apparently, a lot of people demanded it on patient satisfaction surveys.  If the luxury suites aren't full, and they expect you'll only need one night, you get to stay here.

** To my knowledge, he did not, but it helps to imagine that way.

*** Not real name.  Neurosurgeon we met during the previous fiasco in 2016.

**** I just ate a couple of serving-size containers of Haagen Daaz.

***** Cancers, by definition, invade other tissues as well as spread to different parts of the body.  There is an area on my MRI and CT that looks like invasion of the bone, but Dr. Nariz says that he is virtually certain that is dead, radiation-burned bone, so it's not applicable.  (That's good.  When I saw the word, "invading," I was certain I would be toast.)

****** I had been quite worried about the fact that it was in my cavernous sinus, because a sudden clot in the cavernous sinus is deadly, but, when I saw her last month, Dr. Hygeia said I was being ridiculous.  A sudden clot there is highly unlikely.  The tumor is in lots of other places that are much deadlier.

Sweet 16 (or 17?)

Well, off to the races again!  I sit now in a train travelling south to the Big Fruit.  I do love trains.  I don’t love surgeries.  You might think I did from the number I have had.  This will be the 16^th or 17^th, depending on how you count.  That’s more than Michael Jackson had on his entire face.

Last week, in preparation for tomorrow’s surgery, I went down to F’in’ Famous Cancer Center for a CT scan.  You would think the surgeon would be satisfied with the nice MRI I brought him from up north, but, no.  He wanted his own CT scan, so I came down and got it.  K/BWE and I just looked at the results.  It’s pretty much a rerun of what they saw on the MRI, but it’s still exciting.  Once again, I have to ask, how in helicopter am I still alive?  How the Schmidt am I not at least a blind, blithering, wall-eyed, slobbering half-vegetable in a wheelchair?  It’s crawled into everything.  It’s cozying up to my brain.  It’s cuddling with the muscles that control my right eye.  It’s groping my inner right ear, and yet I still hear as well (or badly) as ever.  I have a little headache, which may just as easily be stress*, but I drove to work, did a good job, and did not soil my underpants even once.  I can talk, I can walk, I can sing, I can dance.**

Am I overreacting?  I’m sure there are lots of people with huge, unidentified groping objects*** rubbing against their brains, and it doesn’t bother them.  I can’t help it though.  This thing gives me the creeps.  It looks very malignant, although the first biopsy says it wasn’t, but whatever it is, it’s big and scary and does not belong there.

And so, tomorrow morning, Dr. Nariz will take out a few more samples while trying to not pop my dura mater, the balloon that encloses my brain.  Is it cancer (still a possibility that part of it is)?  Is it a crazy big benign tumor (which is still a problem)?  Is it bacterial?****  Is it fungal?****  Is it the earthly remains of Jimmy Hoffa?  Only pathology or microbiology will tell.

Next update will be postop!

Be well,

Tom

*Hmmph. Stress.  I really need to lighten up.

** That part’s a lie.  I never could dance.  Not even Rachel Settlage could teach me to dance.

***UGOs

****If it is bacterial or fungal, it could be a whole new organism resistant to all antimicrobials (antibiotics and antifungals), which would be good.  I could get it named after me, and I could probably get them to make me first author on any articles they publish.  It would be an unusual way to advance a career, but I’ve hear stranger.

This Stellar sea lion thinks it's just the world's largest booger.

Say what?!?!?!

Yesterday, I had a sinking feeling.  It hit me.  I was going to die.  And soon.  For that moment, at least, it didn't feel very funny.  I thought about my family, my friends, my patients, my cat, and my dog.  I thought about all things I wanted to do while there was still time.

But the moment passed after a few hours, and I moved on to more mundane issues, like what would be the most memorable last words?  Unless you're some sort of improv genius, it's not the sort of thing you can come up with on the spur of the moment.*  And what music should be played at my funeral?  The recessional would have to be Eric Idle's "Always Look on the Bright Side of Life."  Probably no Weird Al.

That was yesterday.  Then came today.  It started out normally (for me).  I did the same disgusting nasal cleaning routine I have done since 2005, took Willow to the park up the hill so she could run like a maniac, and then, I made my usual giant smoothie and went to work.

I was doing paperwork in my office when my cell phone rang.  It was Dr. Nariz, the surgeon at F'in' Famous Center in the Big Fruit.  I was surprised, because we had all expected that the pathologists would be having a field day arguing over my weird tumor.  And he said. . .

Here, to add to the suspense, I have placed a totally irrelevant picture of a Galapagos Tortoise so you will have to scroll down before you see the diagnosis.

Keep Going. . . 

More. . .

it is benign.**  WHAT?  Benign, BENIGN, B-9, BEEEENIYEEEENNN!!!  Huh??  How the smell could that possibly be???

That was the ugliest MRI I have ever seen on anyone!  None of my docs had outright said that it was going to be malignant, but you can tell by their faces and voices.  They get kind of downcast, and their voices go down a register or two.  "We aren't sure what this is.  Maybe it's not malignant.  By the way, there are some really exciting clinical trials for incurable cancers.  Here.  Sign this consent form.  Yes, the side effects are a bit embarrassing.  By the way, this would not be a good time for you to buy season tickets for the Red Sox. . ."

Wow!  Wow!  WOW! 

The surgeon was as surprised as I was.  So were my other docs!  When I told them the good news, one of them cried.  We all thought this was going to be the big one.

I've had half a dozen scares over the course of my life.  The worst was in 2016, when the surgeons at Wicked Famous told me I had 2 years to live (Do the math!), but F'in' Famous did another biopsy, and it was nothing but radiation schmutz that you would expect to find in my Chernobyl of a face.  But this one was a deadly-looking MRI, and the docs at F'in' Famous Cancer Center looked like they might wet their pants.  But no.  Not for now.

Is that the end of this chapter?  No.  Although the tissue that Dr. Nariz got was benign, that is still a big, ugly thing behind my face.  He wants to do another biopsy, this time under anesthesia on June 19th.  I still get to visit an oncologist (never a joy ride) on the 12th. After all, there still may be cancer cells buried deep within it.  

And, even if it's all benign, I don't particularly love having a giant mass behind my face, getting into important blood vessels and pressing on my brain.  At best, it's a giant colon polyp in my face (without the farts), and those are risky in the long run.  Or is it a weird kind of infection? 

So, as they say, it ain't over until the fat lady sings (or passes out at the cast party), but I really like how things are going.  More in 2 weeks!

* The best ever: "Either the wallpaper goes, or I do."  --Oscar Wilde

** 'Benign' never means normal, mind you.  It's what's between normal and cancer.  It's not malignant (generally equivalent to cancer), because, though the cells are weird, it does not invade surrounding tissue or spread to other parts of the body.  

Tumoriffic Tom's, and His Parents', and K/BWE's Terrible, Horrible, No Good, Very Bad Day.

Didya ever have one of those days?  Ya know, the kind of day when you go down to New York for a consult with an ENT cancer surgeon, Dr. Nariz, and he takes a giant pair of forceps that are like 2 feet long, and he yanks a pea-sized piece of tumor out your nose, making a giant 'SPLOING' sound like a rubber band?*  And when he's virtually sure that ya got a tumor, not just an infection?  And when it looks like there is no way a surgeon is going to be able to take it all out unless you want him to take off your whole head?  (Believe me.  I thought about it.)  Yeah, that kind of day.

And, on such a day, don'tya hate it when you get to the airport, the TSA decides that the salt for the nasal lavages you have to do is suspicious and searches your bag and then does the equivalent of a colonoscopy on you?**  And doesn't it totally suck when it's one of those days when your 9pm flight home gets delayed until at least 11:36pm (and counting)?

And on such a day, you find that, at each of the airport gates, they have installed several really nifty-looking iPads that invite you to order food and wine, and you think it may be past time for a glass of wine, but, because it is such a day, the credit card slot next to the iPad doesn't work?  And, meanwhile, the two guys sitting on one side of you are watching something really skeevy on the internet and talking about it loudly, and the toddler across the room is having a meltdown?  And the old man sitting next to you (on the other side) is making love to his tonic and gin, and that's really gross if you think about it?  And the interior decor at the airport is just atrocious?  And they're playing the Eagles' Greatest Hits on the PA?  And you think that guy sitting across from you might be Anthony Weiner?  Don'tya just hate that kind of day?

And, sitting there, all sexy with tissues shoved up your nose so the biopsy site doesn't drip on your clothes, all you can find to do to work out your frustrations is to pump out another Tumoriffic piece?

Don'tya hate it when you have a day like that?  I know I do.

Be well,

Tom


PS:  It could have been much worse.  I was accompanied by my amazing wife K/BWE, and my sweet parents for moral support, and we got to hang out with one of my very best friends, and she fed us home-cooked Indian food.  Her apartment is right across the street from F'in' Famous Cancer Center, because she has my kind of luck, so she's being treated there for the second cancer she has developed since her kidney transplant.  We understand each other.

And this is not the end.  In a week or two, once the tumor has been soaked in a special blend of herbs and spices, I will have the diagnosis.  It is the beginning of another adventure.  Whatever it is, every tumor has a silver lining.



*That's the sound the tumor makes, not the surgeon.

**Actually, the colonoscopy part was a lie.  The TSA officer was quite nice.  She was very interested to learn about nasal lavage, since her son has bad allergies.

He doesn't like those days either.