Home Again, Home Again, Jiggedy Jig

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Tumor on my Brain (to the tune of Singin' in the Rain)

by me and K/BWE

Doo-de-doo-doo, doo-de-doo-de-doo, doo-doo,

Doo-de-doo-doo, doo-de-doo-de-doo, doo-doo,

It's tumor on my brain.

Yes, tumor on my brain!

What a deja vu feelin',

It's cancer again!

My life is insane.

But at least there's no pain [knocks on wood merrily].

So I'm dancin' with my cancer on the brain!

Doo-de-doo-doo, doo-de-doo-de-doo, doo-doo,

Doo-de-doo-doo, doo-de-doo-de-doo, doo-doo.

[NOTE: I don't actually have a brain tumor. I have a tumor that has invaded my brain CASE. Thus, on, not in, the brain. That makes a big difference, at least to me.]

There is an inevitable pattern with surgery and me. 

In the immediate aftermath, I get a surge of adrenaline and cortisol, and I feel OK.(1) Then it fades, and the impact of it sets in. I sleep a lot, or cannot sleep, and I worry. What if the Red Sox don't make it to the post-season again in 2020? When will George RR Martin finish The Song of Ice and Fire, and will that make up for the last, horrible two seasons of the Game of Thrones TV series? Will Rise of Skywalker disappoint me just like every Star Wars movie has since Return of the Jedi? (I am sorry. Ewoks suck.)

*                          *                          *

Eight days ago today, we came home from the City of Steel. 

It was a long trip, and after the museum visit on the Friday, I began to fade. The following day, after a delicious breakfast of The Oaklander's unique oatmeal recipe that requires a sprinkling of hemp, we left the hotel.(2) K/BWE got us to the airport early to make sure to get our flight. She got me a wheelchair, and the redcap pushed it. Frankly, I was embarrassed. I could have gotten up and walked. Then again, not very far.  So, there I rode, surgical mask on and stuffed with gauze to keep me humidified, bundled against what felt like extreme cold--pretty funny-looking.

My one solace was that once we got to the gate, I could drop back into my computer game. My old friend HB gave me his old gaming PC a few weeks ago. It had been sitting around for years, obsolete and unused. Now it served a new purpose. Back in medical school, around 2000, I had found a computer game on the bargain shelf of an Office Depot called "Caesar III." It had consoled me in the darkest days of medical school, so it did again.(3) You can't play it on a modern computer, but it works beautifully on the old operating system. 

Eventually we made it to the Beantown airport. K/BWE had booked us a cab home. On the way, K/BWE's BFE, who is an excellent cook, called and informed us that she had made us dinner, so we should make a detour to pick it up. (She and her wonderful family are located just yards off of the route home.) So we did. Shortly afterwards, we came to our house. Our boy, our cat, and our insanely happy dog greeted us at the door. The dog peed on the doormat in her unadulterated joy (Don't we all do that sometimes?).

Now, the wait

The last few days have lasted years. What's the rest of the diagnosis? Is there a treatment? Will I ever go back to work? If I can't, do I have what it takes to be a member of a freakshow in a travelling circus? These are the thoughts that fill my mind.

There have been some memorable moments. We visited Hygeia, Goddess of ENT, on Wednessday, and she stuck her schnozoscope into my nose and looked around. "Holy living schmidt! What on Earth did they do back there? There's nothing but a 5cm scab and all this empty space where all the dead tissue and tumor used to be!  Those Surgeons of Steel have nerves of steel to pull off such a risky procedure!"(4)  However, although there is a big, empty space with a few nerves and blood vessels running through it between my right nostril and my braincase, it looks really good.  "So healthy, it's sexy!"(5)

And that is where things have stood for days. I spend my time mostly sticking my face in a steam inhaler.(6)

The next steps are coming soon. 

On Monday, we visit IDSA Guy, member of the defeated infectious disease team. They lost the League Championship, but they gave it a good fight, and they maybe did cure me of a deadly invasive fungus infection, so they still get lots of credit. We'll see if I can stay off the antifungals entirely. (Antifungals are no fungus!)

On Tuesday, for the third time in history, we will see Dr. Famous Squamous. Famous Squamous is the Chief of Head and Neck Oncology at the Wicked Famous Cancer Center. He is a super-sub-sub-sub-sub-super-duper specialist -- not just internal medicine, not just internal medicine oncology, not just internal medicine head and neck oncology, but internal medicine head and neck carcinoma oncology! Twice before we have met him in the mutual expectation that he was to be my oncologist, and, twice before, the diagnosis has been the wrong one. Third time's a charm!(7)

But wait! More strangeness!

K/BWE is my wonderful, skeptical, stubbornly persistent, and nerdy guardian angel -- Velma of Scooby Doo brought to life.  ("Yeah, but what if the ghost is actually the owner of the amusement park wearing a disguise! He was the first guy we met!")(8) While I have sought to hide from reality with my video game, she has been pouring over my pathology report and digging into Pubmed.(9)

She thinks it is possible that there is more than one type of squamous cell carcinoma that I might have. One of them is aggressive, invades everything, and spreads around the body. The other does not invade or metastasize but slowly grows in and around everything.

The Pathologists of Steel saw the carcinoma cells invading some bone and thus defined it as invasive, but K/BWE points out that the bone it is invading is probably the radiation-killed bone the surgeons dug out, and, frankly, dead bone is so wimpy, your gramma can invade dead bone. Furthermore, as she has discovered going through papers from Pubmed, there are some funky features that look like the less aggressive kind. Hmm. Good thing? Bad thing? Depends on which and whether they can be treated or even cured.

Find out in the next installment of Tumoriffic!

Doo-de-doo-doo, doo-de-doo-de-doo, doo-doo,

Doo-de-doo-doo, doo-de-doo-de-doo, doo-doo.

*                           *                           *

(1) Adrenaline, at least when mentioned on this side of the Atlantic (in the REAL English), is technically called epinephrine. That and cortisol are stress hormones. 
Stress hormones evolved so that even after a cave lion took a good bite out of your thigh, you might still have the energy and optimism to stab it to death with your primitive spear. They would then sustain you as you climbed up a nearby tree with your family and stayed up there until the rest of the lion's pride and left to hunt that tasty woolly rhino over there. Even if you bled to death after that, your bravery and endurance would have saved your family so that your brother and sister-in-law, Ugwo and Ugwa, along with you bereaved wife, Ugwey, would live on to raise your children, Ugwee and Ugweewee, to reproductive age, thus passing on your genes to humanity.  

(2) I did not make that up. The recipe includes hemp. I suppose it increases the appetite and the general enjoyment of the restaurant. "Dude, that was the best oatmeal I ever, ever had. The French toast, the Belgian waffles, the eggs, and the omelette rocked!" Actually, it wasn't that kind of hemp.  It was more the ropier kind.

(3) Most of the people I knew in medical school were wonderful and admirable. The time commitment was horrendous, and the work gruelling. However, in a bizarre aspect of a supposedly humanistic profession, some of house staff (interns and residents--doctors in training who were just out of medical school) could be insanely vicious, like characters in the Lord of the Flies. 

For instance, on day one of my OB/Gyn rotation, the resident commanded us three medical students to write the daily intern notes on all of the team's patients (a nice break for the interns.). We had never seen these patients, and we had no idea how to write OB/Gyn notes. When we showed them to her, she yelled about how horrible the notes were, not bothering to explain why. She continued to berate us throughout the rotation, and so did her interns. Rumor has it that they all went into OB/Gyn practice together and are hoping to deliver the Antichrist. The expectant mother is Rosemary somebody.

This was also true of some of my fellow medical students. In another two rotations, psychiatry and neurology, I was paired with this medical student whose name was George.  George didn't talk much to me, and, when he did, he would say things like, "I don't like people like you." George went on to be a famous ax-murderer. I sometimes had to spend 18-hour days, six days a week with such people.  (And also some dear, wonderful people who have become excellent, caring doctors who have never used an ax anything but chopping wood.)

Only K/BFE (at that time Best Fiancee Ever (BFE)) and a computer game kept me as sane as I am.

(4) She did not actually say "nerves of steel."   She said something less polite: "____s of steel," a variation on the expression, 'brass ______"*

            * The above is a complete lie.  She used neither expression.  She was amazed, though.

(5) She didn't say that either. But there is something special about the image, no? Theoretically, any one of you could look at the outside of my braincase!

(6) NOT a cool mist vaporizer! Vaporizers blow water droplets into your nose to help moisturize to soothe and protect your nasal passages. However, I do not approve of them. Unless you clean them carefully and regularly, they will grow deadly bacteria. I do not recommend them. GET A STEAM INHALER if you need to moisturize! There is a lovely one available at your local pharmacy. It was originally made by Vicks, but there are rip-off versions too. It's a 5" diameter device with an open chamber for boiling water. It has a soft, clear plastic mask. That's what I use and what you should use if you need it!

(7) The only doctor in history ever to have been more specialized than Famous Squamous was a guy in Fresno who was a dermatologist who specialized in parasitic armpit hair disorders in men named Frank who were born in New Jersey. This was Dr. Axillos, who had one patient his whole career.

We met Dr. Famous Squamous in 2005 before that tumor had been biopsied. Radiation-induced tumors tend to be carcinomas, so everyone assumed he would be my oncologist. However, we soon discovered that the tumor I had then was a sarcoma, not a carcinoma. I wasn't cool enough for him, so we went to another doc.

The second time was in 2016. That was a very dark time. A week before seeing Dr. Famous Squamous, my ENT surgeon, Dr. Otto La Ringolo (known by a much less flattering name among my family, but it sounds too much like his real name, and I don't want to bash a colleague that hard), had told me I had stage 4 squamous cell carcinoma and that I might maybe live another 2 more years on treatment. (That was over 3 years ago, so in your face, Ringolo!!) 

But Dr. Famous Squamous was not so sure. (See:  Whipsaw!)  He told us to go get a second opinion, so we went to F'in' Famous in the Big Fruit. I had a surgery there, the pathologists did more extensive testing, and they decided it was just post-radiation schmutz. And that was the end of that adventure.

The irony of is that La Ringolo may have been right back in 2016, but for the wrong reasons. As he gave me the dread prognosis and K/BWE and I teared up, he mentioned that the only possible hope might be some maniacs in the City of Steel who were pioneering some crazy skull base stuff. Those maniacs were the Surgeons of Steel. If we had taken the risk and flown to the City of Steel, I wonder if they would have been able to take out material further back where neither Wicked Famous nor F'in' Famous would dare go. That could have been the core of the current trouble, and maybe it could have been stopped before it started. 

Hmm. Bummer that didn't happen, but if it did, I wouldn't have had all those awful infections and be in this disaster. You wouldn't have this to read. One must sacrifice for art.

(8) I do not have a Hanna Barbera spirit character. I have a spirit animal, and that is an Okapi.

(9) There is an important lesson here. For general medical knowledge, you will never outclass a good doctor. Doctor Google and Gwyneth Paltrow are not medical school and residency. However, if you or your loved one have the time and inclination, you or that loved one can become an expert in your condition. That can be as basic as knowing all of your medications, their doses, the appearances of the pills, or how long and why you have been on every single one.  Or it can be as deep as K/BWE goes. She reads pathology reports, carefully searches Pubmed (a giant database of scientific medical publications), and finds subtleties that even my specialists may miss. She knows that she isn't a doctor, but she has a Ph.D. in my health, and she asks the medical doctors really good questions.

Here I am sporting the latest in LL Bean post-minimally-invasive-skull-base-surgical airportwear!  It keeps the bottom of your braincase from freezing and drying up in the cold air! 

We Have a Winner! And the Answer Is. . .

Yes, folks, it has been quite a long League Championship Series, each game running at least into 10th and 11th innings, with the Infectious Diseases Geeks battling it out with the Oncology Nerds, and umpire calls being reversed left and right. Fungus? Cancer? Cancer? Fungus? 

Well, Game 7 is over, only one team is going on to the Tumoriffic Series, and then the real fun will begin!

(Note: yes, I know this is a long one, but still, try not to just skip to the end. This is Art! You gotta read it in order!)


The Day Before the Day Before the Day Before

As was the plan, K/Best Wife Ever (K/BWE) and I flew to the City of Steel on Nov. 3.  The flight was uneventful.  My parents, (Dr. Dad and Dr. Mom) had driven all the way up from my old home town in MD, and they picked us up at the airport. The Residence Marriott was too declasse for my parents, so they decided to stay at a fancier Marriott called The Oaklander. They paid for a room for us to stay there, too. (BTW, the hotel is upside down. The lobby is actually on the tenth floor.)

For dinner, we drove out to one of the best and strangest restaurants I have ever been to. Far out in the suburbs, Superior Motors is located in a former car dealership in an otherwise isolated neighborhood, literally across the street from an operating steel mill that has billowing smokestacks and purple flames rising from tubes.

Inside, the decor is stark, the benches made of concrete with cushions.  The food was delicious and original, really first rate. If you're ever in the City of Steel, go there, especially if you're getting an angiogram the next day!

I hardly slept that night.  For some reason, I was anxious.  Silly me.


The Day Before the Day Before

November 4 was get a CT and meet some doctors day.  I met the Vascular Surgeon of Steel who would do the angiogram on me on November 5.  If you remember, the idea of that was to map out the arteries supplying my tumor and block it off so I wouldn't bleed to death.  (Awfully nice of them!)

I was supposed to see the ENT Surgeon of Steel and meet the Neurosurgeon of Steel, but they were in a complicated surgery that went late, so they never came. We met with the Fellow of Steel instead.

That night, we ate at the restaurant right next to the lobby on the 10th floor of the hotel.  (I just can't get over that 10th floor lobby!)

And then it was time to go to bed.  Next day, I would have the angiogram, and I would be admitted to the University of Steel Medical Center.  I had a little anxiety and trouble sleeping that night.  I can't imagine why.


The Day Before

Having an angiogram wouldn't be on my Tourism Top Ten list for the City of Steel. After Superior Motors, it was quite a letdown.

First of all, there was no wine or other intoxicant involved, for reasons I will explain below. Also, they made me take out my hearing aids, because they needed to image my head, so there went the witty conversation.  Then, instead of serving me a delicious squash curry soup with a cranberry preserve for a starter, or giving me the equivalent of a delicious red wine so I that I could be nice and blissed out for the procedure, the Vascular Surgeon of Steel just stabbed me in the groin with a giant needle.(1)  Then he threaded an arterial catheter into my femoral artery.(2)  Feh!  Meanwhile, his assistant stabbed me in the left wrist and inserted an arterial line and two(!) IV's.(3) Vascular people are a bit crazy with needles.

The Vascular Surgeon of Steel threaded the arterial catheter all the way up past my heart, occasionally releasing dye along the way. The dye would give me a hot feeling wherever it was released and also, (are you ready for this?) in my butt. Very odd.

Then I felt heat on the left side of my face.  "Wait a minute, Bub," I said, "do you have dyslexia or something? We're supposed to be doin' stuff on the right side." And he said, "yeah, well, the joke's on you. Before I'm going right, I'm checking out the left internal carotid artery to make sure it's wide open. That's because I'm going to blow up a little balloon that will block your right internal carotid artery, because they may end up 'sacrificing' the right internal carotid artery to take off the tumor that's coating it. They need to know if you can live with just one internal carotid artery." (WHAT????) (4)

And I said, "huh?  I didn't hear any of that." (Alright, that part's a lie. Otherwise, I couldn't tell you the story. Everything else is verbatim.)

Anyway, the left internal carotid artery was fine. So, he withdrew the catheter a little and ran it up into my right internal carotid artery and blew up the balloon. I could actually hear it, but I didn't feel any different.  They did a little neurological exam, having me wiggle my fingers and toes, etc.  I was getting by just fine with one internal carotid artery!  They tested it further by lowering my blood pressure, and I still rocked!(5)  So, there it was.  If they needed of take out my right carotid artery to remove tumor, they could without causing me any grief at all.

They never did do that neat trick where they would clog the little arteries supplying the tumor.  I haven't discussed it with them, but I think it's because so much of the tumor was supplied almost directly by the carotid artery, it was a whole different ballgame.

After that, I hung out in the recovery room and was eventually wheeled up to the Vascular Intensive Care Unit, which seemed excessive, since I still felt pretty good, if over-stabbed.  I got my very own room with a hide-a-toilet that pulled out of a cabinet.  (Imagine how cool that would be in the home!)

(Skip this paragraph if you're not into oversharing)  Speaking of toilets, remember the assistant to the Surgeon of Steel who gave me the arterial line in my left wrist and the two IV's?  Well, one of the IV's was on the back of my right hand with a loop of tubing that went out to the tips of my fingers.  I'm a righty, and my left hand was out of commission from the arterial line anyway.  How the smell was I supposed to, um, clean myself after, um, ya know, with that stupid tube? So I thought that Nurse Andrew might have to, um, help out, which I did not relish at all.  (No offense to him.)  Luckily, we did figure out a way around all of that, and my dignity was left intact.

Once again, I didn't sleep too well, but I got to hang out and trade war stories with Nurse Andrew and Resident Inia, which was fun.


THE DAY OF!

Finally, it was November 6, the day of the big operation.  As per protocol, they talked to me about the possible risks: "you may lose the ability to control your right eye, you might become a jibbering idiot, you might vegetabilize," yaddah, yaddah, yaddah, same old, same old.(6)  Of course, I signed.  What was I going to do at that point?

I don't remember much after that for a while, which is just as well.  When I woke up, I was in the recovery room, recovering as one does. They had taken out a big chunk of tumor from behind my nose, so I was breathing better than I had in months, and they cleaned out all of that dead crud that had been giving me infections and rancid breath for years.  Even with all that cutting, they did not need to make the tissue patch the ENT Surgeon of Steel originally had planned.

They elected to leave my tumor-coated right carotid artery alone because they had found a concentration of the oddity dense enough to identify the culprit. 

**And, drum roll, please, the answer, based on the frozen section, is....cancer!(7) Yes, a grand slam for oncology, a hard-fought win after a grueling pennant series!(8)**

They tell me that the little fella is a squamous cell carcinoma. You can find squamous cell carcinomas (SCC) in all sorts of places, but, most famously, on the skin. SCC is usually viciously aggressive, growing and spreading fast if not stopped early. But my squamous cell carcinoma seems to be nice and pokey, at least so far. Although it has grown into too many awkward places for a surgeon to remove it all, there seems to be time to search for a treatment, maybe even cure, and there have been some amazing breakthroughs in immunotherapy just in the last few years. It's going to be a tough Tumoriffic Series, but I'm putting my bets on the Oncology Geeks to win the championship.

Weird as it is, I am actually relieved, because I finally know what this awful thing inside my head is.  There have been some fun times, but, mostly, it's nerve-wracking to not know what that sort of thing is and to go back and forth between specialists like a ping pong ball.


After the Surgery

It had been a pretty quick surgery.  The Surgeons of Steel were "faster than a speeding bullet."  I was out in under 4 hours, with only about an hour and a 1/2 of that being actual surgery time, which is great. We were expecting six+ hours. It's making my recovery much easier.

I spent the night in the Post-Operative Unit. Nursing Assistant Ashley was brilliant and funny and will be going to nursing school soon.

Then, strangely, as if it had all been a dream, I left the hospital and returned to the Oaklander the next day, on November 7.

And, today, on November 8, here I am typing in the hotel bed. My energy is on and off again. K/BWE, my parents, and I visited the Magnate of Steel Natural History Museum this morning, as I have wanted to do for years. I think it's the best I have ever seen. Dr. Dad pushed me around in a wheelchair because walking tires me out easily, but I expect I'll be up for hiking next week. 

We fly home tomorrow.


Next, 'the Search for Spock'

No.  No.  That's not what is next. What's next is the search for an oncologist. We have a couple in mind right in our home town, where some of the world's leading experts on squamous cell carcinoma of the head and neck are to be found.

Will the treatment allow me to go back to work, and if so, when? Find out as the Tumoriffic Series commences soon!




(1) The reason they didn't make me nice and woozy for the angiogram was that they needed to do neurological examinations while it was happening. I had to be awake for those.

(2) Although females do have femoral arteries, there is nothing particularly feminine about them.  Everyone has one in each leg. The root of their name is the same as the giant leg bone next to which they run, the femur. Why they aren't spelled 'femural,' I can't tell you.

(3) An arterial line is a vascular catheter like an intravenous (IV) line, but, as the name implies, it's in the artery.  Mine was in my left wrist, just upstream from the thumb.  That's the usual place.  Definitely hurts to get one, so it's not my favorite, but I have put some other people, so it's only justice that I got one, too.

(4) As you may have guessed or known already, my carotid arteries have always been some of my favorite arteries. The 2 external carotid arteries supply important stuff like the face and the voicebox, but the 2 internal carotid arteries are even more special. They supply the brain. They're not the only suppliers. There is a big hub up there called the Circle of Willis ("What you talkin' 'bout, Willis???") where a whole bunch of other arteries plug in and can help out if one of the others is hurting.  However, the system isn't perfect, so they had to make sure.

(5) I am extremely proud of this. How many people can say they can survive with just one internal carotid artery!

(6) I just made up the term 'vegetabilize!' You read it here first!

(7) A frozen section is a quick way to examine tissue from a surgical biopsy.  The tissue is quickly sent to the pathology lab, the pathologists, rubbing their hands greedily, drop it in liquid nitrogen.  It freezes solid so they can slice it nice and thin like luncheon meat, and they can look at it through the microscope.  It doesn't tell them everything (That takes days or weeks), but it often tells them enough to make a general diagnosis, like they did with me.

(8) The surgeons also did me another big favor: they cleaned out all that radiation-killed, foul-smelling tissue that had been giving me infections and rancid breath for years. This is a huge quality of life issue. I am very grateful!

A Different Kind of Pole Dancing!

Here, I am exhibiting the essential supplies for any good trip to the hospital.  I am serious.  They will dress you only in those stupid gowns which are uncomfortable and humiliating.  Bring your own bathrobe, sweatpants, warm socks, and slippers, and your hospital stay will be much more pleasant.  The Navy surplus hat is optional.

On the Cutting Edge: S minus 7 days!

It's getting close!  In only 7 days, in a room deep inside the University of Steel Medical Center, the Surgeons of Steel will slip their steely scalpels into my schnoz and work their steely magic on the mysterious mass behind my booger blower! (1)

I'm so excited!  This could be the most exciting day of my life, although I plan to sleep through a lot of it.  I'm bringing a big posse: K/BWE,  Dad, Mom, and Aunt Ickey!  The Professor, Willow, and Katie will be holding down the fort with the help of Best-Sister-in-Law Ever (BSLE) and Best Niece Ever (BNE). (2)

Nov. 3, the flight.  'Nuff said.

Nov. 4, visits with various Doctors of Steel, and, I hope a visit to the Natural History Museum of the Magnate of Steel.  The museum has awesome dinosaur skeletons that I have wanted to see since the Professor was called Little Lord Chaos and into that stuff.  (He has moved on, but I have not.)

Nov. 5, the angiogram.  I gotta get up at like 4 in the morning or something.  Doctors are crazy!  They should all be locked up.  Anyway, that particular doc (as -yet-to-be named) will thread a catheter (A different kind of catheter, perverts!) all the way from an artery in my upper arm to my great blood blasting artery (aorta) and taking a turn up my right carotid artery and then some smaller artery I might have learned about in medical school and that almost nobody cares about.  Then, said doc will release tiny beads (probably made of turquoise from New Mexico or something else pretty) into the arteries supplying the part of the mass that is accessible through my nose so I don't bleed to death when they take it out the next day (a net plus).

They're going to keep me in the hospital for the whole rest of the day!  I have no idea why, but I think I heard something about a padded room.

Nov. 6, S minus 0.  Blast off!



P.S. The Professor has cruelly tricked me into watching baseball again.  Now, I can't go to bed before this darn thing is over!






(1)  I'd like to clarify something.  Though they stab it with their steely scalpels, but they just can't kill the beast.(3)  This thing is filling all of my sinuses and the weird, giant, central, brain-draining vein, and it's also right next to my brain.  No surgery will fix that.  Maybe chemo or antifungal medication will.  Maybe if I sacrifice a goat, but I love goats, so, no.

(2) Katie will be in charge of protecting the family from small mammals and birds, and Willow is responsible for protecting against evil forces outside the window, visible only to her and in need of a good barking.

(3) Many of us hate the Eagles.  However, that is a great song.  I do like the Gypsy Kings cover better than the original, but still.

*                    *                    *

I washed Willow this afternoon, for she had rolled in foulness.  It was the worst experience of her entire life, but she seems to have forgiven me.

GAME ON!

Note: a couple of weeks ago, I wrote my most brilliant piece ever. It would have would have won the Nobel Prize for Blogger Blogging.(1) But just as I was about to publish, it disappeared.(2) Alas, what future generations will miss! I had writer's block as I tried to reconstruct it, but more important events have intervened.(3)  This entry was written has a word document before I pasted it here.  Duh.

As Clear as Mud

Remember all that forgetfulness and falling stuff?(4)  Maybe it was a small stroke. Maybe it was the mass growing into my brain. Maybe it was a side effect from the antifungal medication. Or maybe it was from the sandwich I made with the bread that was growing hair.(5)  It was time for an MRI.  An MRI should detect a stroke and can measure tumor growth. It can't detect medication side effects, and it certainly cannot detect the sandwich I made with the bread that was growing hair, but it's a start.  So I had the MRI a week ago.

The doctor called that night to tell me that the mass is growing into the back of my naso-whatsis.(6)  The doctor was so concerned by this that they recommended I consider getting a Percutaneous Endoscopy Placed Gastrostomy (PEG) tube because it would soon become impossible for me to swallow, and thus to get an endoscope down my throat.(7)  The procedure they would use if that happened would be much harder on me. 

The doc then described in disturbing detail how, for a PEG (the gentler procedure), they would shove the endoscope down my esophagus into my stomach.  There, they would shine a light so bright it would be visible from the outside. They would use a scalpel to cut towards the light.  Then they would pull through a tube that looks a little like the alien that burst out of poor John Hurt's stomach and leave it in my stomach, sticking out.  I would then have to use that tube to eat.  Although my grandfather enjoyed the smooth way vodka went down his own PEG, I didn't find the idea enticing in the least. 

After this, K/BWE, Willow the Dog, and I had a little freakout, while the Professor and Katie the Cat obliviously watched baseball. We did feel better in mere minutes when we then joined five of our best friends for our regular Tuesday night online game, where my job is mainly to make other people laugh.

The official MRI report came back the next morning. The radiologist, Dr.Glow, did not notice any significant changes since the last one they have access to--May 2019.  That was before the surgery, so it's a little weird, but when is it not a little weird with me?  Weirder still, they see no sign of tumor inside my braincase at all.  As certain people said in the debate tonight, let me be absolutely clear.  She did see tumor in my nasopharynx and my sinuses just like before.  I called her for clarification about the intracranial part of the mass.  She disagrees with the interpretation of the May, 2019 MRI.  That means that not even the radiologists agree about what's going on.

She did not see a new stroke, which weirds me out.  My symptoms have improved.  That's consistent with stroke, not with tumor or medication reaction.  That leaves hairy bread sandwich.  I guess I'll accept that for now.  I will be curious to know what the folks at the larger hospitals think.

But events have moved fast, and that's no longer where the real action in this story is!

Back to the City of Steel!

That morning, we received a call from the ENT Surgeon of Steel. The Game is on! He and the neurosurgeon have agreed that this surgery will happen! We took the opportunity to press him for details.

First of all, I wanted to reassure myself that this wasn't a crazy move. I asked him how often he and his partner did this kind of surgery.  The answer was, every week for 13 years and similar surgeries every weekday, and they have a good record. That's the kind of answer you want from a surgeon. The single most important factor in determining how confidant you can be in your surgical team is how many times and how often they have done the surgery in question.(8)  This was really good.

I asked where they will get the flap (graft) to patch the hole in my skull.  He said he would look for nearby tissue in the back of my nose. I expressed skepticism since, as I said, I have had an absurd amount of radiation to that area.(9) I reminded him of how much radiation I have had, and asked if he had ever seen someone that had had that amount. "Um, that's a lot." However, he quickly responded by saying that, if necessary, they will take some subcutaneous tissue from under my scalp, drill a little hole somewhere (I forgot to ask exactly WHERE he will be drilling - that seems important! I'll have to ask more about that later), tunnel the tissue and its blood supply under the skin, and pull it through.  Then they would patch it over the hole. 

I swear, I did NOT make this up!  I am very willing to do it, but how did they even conceive of such a weird procedure??

Anyway, they are so used to doing this procedure, that they actually bored with it.  To keep from falling asleep, they hang themselves upside down in the operating room, one hand each holding a paddle for their ping pong game and one hand each doing the surgery.  The ENT Surgeon of Steel is ahead despite the fact that his glasses often fall of during games. (10)

He also thought getting a PEG tube was unnecessary. So much for that idea.

Since then, events have proceded apace.(11)  K/BWE has made the appointments (because she rocks). On November 4, I have an appointment in the City of Steel to get a preoperative evaluation from an internal medicine doc. The next day, I see the surgeons, get my angiogram, and enter the hospital.  On November 6, let the wild rumpus start!

(1) I have the best words!

(2) Thanks, Blogger!

(3) Also, it's distracting to have sports on all weekend. Since the early spring, the Professor has become a sports fanatic, so I'm starting to follow baseball again. Incidentally, true to his nickname, the Professor now knows every fact ever known about baseball, and he's starting on hockey.  I am proud that, since our home city's team didn't make the playoffs, he is rooting for the baseball team of my old home in the pennant.

(4) Oct. 2 post

(5) I think it was a small stroke. The symptoms have improved. Small strokes are actually a yawner for me.  I've had a couple.  The whole idea starts to get old, so they're not even good for thrills. 

Anyway, I have put all my money on small stroke because the symptoms mostly cleared up in a matter of weeks. When you have a small stroke, a little part of your thinking thingy goes kaput, but the neurons around the dead spot quickly build work-arounds that are almost as good as new.  I am no longer forgetting so much or falling down wells during long hikes.  (I will, dear patients, have a full neurological workup to make sure I am ready before I return to work, hopefully in December.)

(6) A.k.a. my nasopharynx, the part where the throat comes up behind my (and your) nose.  That is the source of many of my recent troubles since that is where my radiation-abused soft tissues melted away to expose radiation-murdered bone that is allowing fungus to grow and pass through into my braincase. 

(7) So named because it was invented by somebody named Peg, apparently.  By the way, if you have a gastrostomy tube, you may want to check out Amazon. They have (not kidding) several stylish options for belts to hold the outside end of the tube.  I want mine in black lace and silk. 

(8) There are exceptions.  In the early 20th century, for 20 years fake doctor John Romulus Brinkley was famous at first for implanting goat testicles in men to treat impotence and then in men or woment for a 27 different ailments, including flatulence.  He claimed consistent success and got very rich, but he died bankrupt from multiple malpractice, wrongful death, and fraud suits. (Wikipedia on J. R. Brinkley)  Interestingly, he also was extremely influential in the history of country music and radio.  Pope Brock (Pope is his first name, not his title.) wrote a fantastic and hilarious biography of him called Charlatan.  I highly recommend it. (See Charlatan on Pope Brock's webpage) 

(9) It's the equivalent of snorting plutonium powder every day for 6 months. 

(10) The ENT Surgeon of Steel is ahead 460 matches to 430. 

(11) K/BWE FedExed copies of my MRI all over the place, we await their reading. 

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This dog is steeling herself for what's coming.*

 *Thank you, TCD for the excellent pun!
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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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October Update, Part 1: About That Fungus

Note: the following post is so gross, it has been rated Thanks For Sharing (TFS)," and Not Safe For Dinner (NSFD).  Only the last paragraph is suitable for children under 13.

Also Note: In response to numerous, angry protests, I have adopted an easier to follow form of footnoting.  What was * is now (1), and so on. Oh, what I do for my public!

*                              *                              *

Posaconazole has been making me miserable.  Normal days or hours have alternated with days or hours of chills, shortness of breath, clumsiness, and stupidity.

The fungus has also been doing it’s part.  It has been blocking my left nostril, making it pour mucus onto my food and clothes.  Jackson Pollock shirts may be fashionable in New York, but I'm not there yet.  I have been stuffing Kleenex in my nostril.(1)

My left ear too has produced prodigious mucus.  The mucus drip asymmetry accentuates the Jackson Pollock style, but I, a stodgy, middle-aged doctor, have been stuffing my ear with cotton.  Feh!

But note the crafty use of the past perfect tense above to create suspense: “have been,” “have been having,” etc.  (Is that the correct term, grammar nerds?)  Anyway, much has happened over last 2-and-a-half weeks, and, finally, the fungus is on the rungus!(2)
 
Because of the side effects, IDSA Guy reduced my dose of posaconazole just over 2 weeks ago.  What a difference!  No more stupid!  No more chills!  No more terrible fatigue!  K/BWE even gave my wallet and car keys back to me (not kidding)!

Posaconazole also appears to be reversing my fungal symptoms.  I am breathing through my nose!  I am no longer gushing ear mucus that soaks left hearing aid.  I can wear it again!

Posaconazole still makes me clumsy, and I tend to stumble even at home, much less on the hilly, rocky hikes I take with Willow.  

Luckily, though, Willow, like the famous Lassie, is a genius. Should I, perhaps, trip on a rock and fall down a well, she will run miles and find K/BWE in less than 5 minutes. Her barks will somehow be intelligible to K/BWE:

Willow: Woof, woof, woof!

K/BWE:  Tommy's tripped on a rock and is caught in the well at the top of Whipple Hill(3) near the entrance at the intersection of Winchester and Berkshire Drive?

Willow: Woof, woof, woof!

K/BWE: He's at the top of the hill, so we need to call a medivac team?

Willow: Woof, woof, woof!

K/BWE: Good girl, Willow!

So I feel totally safe.

And I am probably going BACK TO WORK on October 3!

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




(1) This is also to conceal my new secret identity as Mucusman.

(2) Rungus is Ancient Latin for “retreat.”

(3) Whipple Hill is the former location of lavish mansion belonging to the famous advertising star, Mr. Whipple. He died in a terrible accident when he squeezed the Charmin too hard, and he left no heirs.  It is now conservation land. https://www.youtube.com/watch?time_continue=56&v=hoHhzyh9kCg

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The Tables Have Turned!