A Little Light in the Darkness

I'll tell you, this has not been a fun 8 days.  Waiting for medical test results is not like waiting for Christmas.(1)

At my appointment last week, Famous Squamous said that my PD-L1 results should be ready in 2-3 days.(2)  That's all I heard, and it is in K/BWE's careful notes.(3)  But then later in the same appointment, K/BWE heard him also say that it would be 1 to 2 weeks before we would have immunotherapy results, and she put that in her notes as well.(4)  Famous Squamous was speaking quickly and moved on to other critical topics, so K/BWE and I did not have time to ask him to clarify.  "Blah, blah, blah, your hearing, blah, blah, blah, turn into an abstract artist for a single day, blah, blah, blah."

So we waited. And the wait was driving me crazy.(5) The anticipation was killing me.(6)  Even my ever-energetic ever-eager dog looked at me like, "dude, chill out!"  I was not chill, and I was not going to chill until I got some answers.

Last night, I tossed and turned.  All my meditation techniques and apps failed me.  This morning, 8 days later, we still had no PD-L1 results.   

Then, the phone rang.  It was Famous Squamous.(7)  He said that the results are back, and my tumor is indeed PD-L1 positive!  That means that I will probably be started on pembrolizumab (Keytruda, Pembro) alone, and not chemotherapy. What a relief!

Pembro is a great advance, but not necessarily a miracle drug.  For some, it doesn't work (although having the PD-L1 marker is a good sign that it will work). For others, it works for a while, but then it stops working. And for the luckiest, it keeps on working and working and working. But Pembro hasn't been studied long enough to know whether even the luckiest people will live normal lifespans.  And of course, we don't know if I will be among the luckiest. 

We also don't know if it will make me sick, how sick it may make me, and for what fraction of the time it might make me sick. Treatment with Pembro requires an infusion by IV once every three weeks.  Some people it devastates.  Some it barely touches.  Will I stew indefinitely in side effects that will force me out of my career, or will I be one of the really lucky ones and keep going as if nothing is happening?  We'll have to wait and see. 

But Tinkerbell has lit up far in the distance down this darkest of dark tunnels.  Maybe there is a way out.

*                    *                    *

  

(1) "Oh boy, what's Santa bringing?  I know it's early, but CVS has the decorations already, and he said he was coming in 2-3 days."

"Don't get too excited, Tom.  It might be a lump of coal."

(2) No points off if you don't remember.  Besides, this is a more accurate and complete way to put it. 

PD-L1 (which I remember by using a set of four-letter words as a pneumonic) is the protein that some cancers overexpress (have more than normal cells) on their surfaces to hide from the immune system.

The tumor is the Joker, and those special T-cells are Batman.  Just as Batman is about to capture the Joker, the Joker throws his special illusion dust into Batman's eyes. "Commissioner Gordon, for a moment I didn't recognize you in all that clown makeup!  By the way, that's a nice purple suit you're wearing."

Pembrolizumab is like protective Bat goggles that protect from the illusion dust (PD-L1), so that Batman can recognize the Joker for the villain he is.  "Nice try, Joker, but it's back to Arkham Asylum (actually programmed cell death) for you!

By the way, this is what 'boosting the immune system' really means.  Crazy claims for antioxidants and various herbs are scams to empty your wallet.  No one has tested them. 

(3) Did I ever mention that you need to bring a note-taker to serious medical appointments? You do. You can't have mine (unless you're family), so get your own!

(4)  How does it work when the contract says two different and irreconcilable things?  Does the first statement control? Or did second statement void the first? Can I get my money back??? I already talked to my lawyer (K/BWE), and even she doesn't know.

Actually, she does know: she says it wasn't a contract, because "there was no consideration!" (That is what passes for humor among lawyers. If you don't get the joke, ask a lawyer).

(5) I should be more realistic. As my father likes to say, "that's no drive.  It's a short putt."

(6) That's incorrect.  If anything is killing me, it's--no, I won't say it.

(7) Famous Squamous was very professional about it and said good things about the team at Man's Best Hospital.  He's a great writer and authority and a good guy, but he was just not the doctor for me or for K/BWE., and neither were his surgeons.  I wish him and his surgical team well.

Mickey Cormorant: Tom, do I look like Batman?

Me: Yes, Mickey.  Just like Batman.

The Worst Experience of My Adult Life (OK, well, not literally)

A little update:

So, it turns out that K/BWE and I were not so happy with Dr. Famous Squamous yesterday. He is extremely eminent, but does not seem to be the most emotionally sensitive doc. For instance, he poo-poo'ed my concern that we should think very hard before considering the use of cis or carbo-platin, the chemo agents that made me dependent on hearing aids since 2005.(1) Also, I have not had the best experience with the surgeons at Wicked Famous (see yesterday's post), and those surgeons are on his team. Yet he insists that we stick to his team only.

We may stay with Famous Squamous, but we are lucky enough to be in a town with several top flight hospitals. There are some other very eminent people at another local hospital, including a surgeon I have met before and who comes highly recommended by Dr. Fixer.(2) Bottom line: I want to have a rapport with the quarterback in the biggest game of my life (so far), and I want to have confidence in the team.(3)

But that was not the worst experience of my adult life. That happened today.

K/BWE were already emotionally wrecked by thinking and talking about my team and treatments.  Then, I had to go for an MRI at Ben and Jerry's at 6:45pm. We drove to the hospital early to make sure traffic wouldn't make us late, parked, and went into the main hospital for dinner at the Au Bon Pain in the lobby.(4)(5)

This MRI was scheduled, not in the usual radiology suite, but in a building across the road from the main hospital. As we crossed the road, there was an ominous sign (literally). It was a sign that they put in front of the door of said building the very moment we started crossing the street. We had to go back to the main hospital and cross the bridge.  We walked over into a large, eerily empty building.  There were no signs indicating that there was an MRI, or even a radiology suite, anywhere in the building except something about a silly ultrasound place.

We began to wander the halls. It was a labyrinth. Eventually, a doctor walked by on her way out, and we asked where the MRI was.  She told us it was on L2, and led us to the elevator.(6) Only in the elevator was there an indication that an MRI was in the building.

But the worst was yet to come!

I was escorted to the MRI dressing room by a very nice tech. Taped to the wall of that room was a frightening picture (see below).

It took two tries for the tech to get the IV in, but she was nice about it, and we laughed, so that was not so terrible.

But then, the worst experience of my adult life!

I entered the MRI suite. The techs had me lie down on the scan bed. They put headphones in my ears. They asked what music I wanted. I asked for oldies. Then they put earmuffs over the earphones, and the scan bed slid into the tube of the machine.(7) 

A few minutes in, IT started. I began to scream at the top of my lungs, "Make it stop, make it stop!"

"Sir, are you claustrophobic??"

"No! It's the music! That is the WORST cover of The Sound of Silence that I have ever heard!"(8)

I am not lying. It was soul-destroying.

Mercifully, they turned it off.(9)

*                       *                       *

(1) I like talking, but I also like to hear what other people have to say sometimes.

(2) http://www.tumoriffic.org/LLC.htm

(3) It's important to have a doctor who knows your values and will be guided by them (as long as that is medically appropriate). Also, you need to trust the people who may operate on you.

(4) In French, the means, "oh, good pain!"

(5) Many the time, in 2005, during the nights when I was inpatient for chemo and couldn't sleep, I would wheel my IV pole into the elevator, take it to the lobby, and pick up some yummies at "McFrance."*  (Oh, sweet memory!)

* I stole "McFrance" from a song played by a friend's band.

(6) Oddly, Doctor Ariadne was carrying a large ball of thread and spoke in an archaic Greek accent.  Totally got us where we needed to go, though!  (Even oddlier, we think we might have heard a faint, terrifying bovine roar from around a distant corner.)

(7) I recommend closing your eyes for MRIs. Then, you can pretend you're not in such a small tube. I actually find it cozy, myself.

(8) Imagine if The Sound of Silence were sung by a perky twelve-year-old who can't carry a tune.  Seriously. ARRRGGGHHHH! That is my favorite song! I sing it in harmony with my best friend. 

I am scarred forever.

(9) To top it off, there was a complaint box in the waiting room, but when I eagerly approached it, I saw that there were no complaint slips.  The horror.  The horror.





This was the terrifying flyer posted in the changing room.  Note that neither of the figures pictured have heads.  Also, neither of them have human proportions.  The one the left is clearly some kind of troll, and the one on the right is one of those tall skinny aliens whose head would have been grotesquely enormous before it was chopped off.

Do You Feel Lucky, Punk?

Everything old is new again.

K/BWE and I went to Wicked Famous Cancer Institute to visit Dr. Famous Squamous today. 

I have a long history with that place. In the summer of 1983, when I was on chemo and got an infection while vacationing on the Cape, I went to the cancer ward of their affiliated pediatric hospitaI for IV antibiotics for a few days. 

From 1993-1995, I worked there as a labgrunt, extracting DNA from blood drawn from people who had a family and personal history of multiple tumors.(1), (2)

In spring 2004, I went to the hospital where they send their inpatients, Ben and Jerry's, for removal of a cute little tumor on the roof of my mouth.  That summer, hungry for more Ben and Jerry's, I went back so that the Jedi Master could take out an itty-bitty little tumor tucked snuggly under the left temporal lobe of my brain.(3) 

But I wasn't through with them. I went back in the spring of 2005 and got chemo for my osteosarcoma. That was a real barrel of monkeys!(4)

Since then, I have been back and forth with various freakouts and false alarms, the last and most hilarious one in 2016.(5)

So today was like old home week. We drove down into a garage under a building right across a little street from the one where I used to work.  We were almost running late, so K/BWE gave the key to a valet, and we took the elevator to the 11th floor.

After a short time in the waiting room, Famous' Squamous's NP brought us into a room and we updated him. A short time later, in walked none-other-than Famous Squamous.

He's a tall, lanky man with deep voice and a slow, easy Texas accent.  He wears a cowboy hat, a vest, and elaborately braided cowboy boots. No, wait. That's Sam Elliott.

No.  Famous is a somewhat short, soft-spoken man neatly dressed in a fine suit and tie. Anyway, he is still Famous Squamous, and he is the law in the little town of Head and Neck in La Carcinoma Valley.

"Hi," I said, "we have to stop meeting like this!  Maybe the third time's the charm, though."

He gave a quiet laugh. Then, he said, "do you feel lucky, punk?" Oh, wait.  That's Clint Eastwood, and not even in one of his westerns.

Anyhoo, he laid down the facts.  Whether this is the slow-growing kind or the fast-growing kind, this is squamous cell carcinoma (SCC).  SCC is generally an aggressive, nasty tumor. So, assuming that the Wicked Famous pathologists agree with the City of Steel pathologists, it needs to be treated.

There is a relatively new drug called pembrolizumab (pembro for short).(6) It pins a 'kick me' sign on the back of the tumor cells, and, if it works, your immune cells kick it for a field goal. It has a great effect on some patients, suppressing the tumor indefinitely, and usually without much in the way of side effects. If pembrolizumab works for me, they don't know for how long it would work, but some patients have stayed well for two years and running.

Sometimes they can give pembrolizumab alone, without any of the traditional toxic chemo drugs. Sometimes they can't. It seems to depend on some testing they are doing right now on the juicy bits of tumor they sliced off in the City of Steel.

If I am super lucky and my tumor tests just right, I might be able to get pembrolizumab alone. Aside from an infusion at the clinic every 3 weeks, life might go back to 'normal' for some unknown amount of time. It also means that I might be able to go back to work as soon as next month.

If I am not so super lucky, Famous will talk to us about regular, fun chemotherapy.

We will find out more in a few days when the test results comes back.  And so will you.

 *                            *                            *

(1) This was some of the first work on the genetic roots of cancer.  Some cancer fans may recognize such stars as p53, BRCA1, and BRCA2--very exciting, if you're into that stuff. 

It was great job, and I loved my boss, Sig, and co-workers Li and Stasia.  I lived in an apartment two towns over.  I would get up early, and, in all wheather, I would bike all the way down to the Chuck River, taking a path along it and then crossing to go through the back streets all the nine miles to work.  I would lock the bike on the rack and run up all nine floors.  There was actually a shower, so I would shower and dress. 

I would work all day and often into the night.  I had optimized the DNA purification process, so Sig and I had time to run an experiment on the side that we should have published but never did.  I was as sleak and as organized as I would ever be in those years. So I have a certain love for that place.

(2) At some point during that time, I went to a talk about the effect of cyclophosphamide (a chemo drug I was given as a kid) on male fertility.  It was bad and got worse the higher the dose was.  My dose was way off on the flat end of the curve.  So I got tested.  Not to brag, but I deflattened their curve.  

Still, it meant that, in 2002, when K/BWE and I decided to have a child, we knew to get help immediately.  That was a wonderful bit of luck.  Given the tempest that was soon to follow, we might never have had a child, and Little Lord Chaos/the Professor would not have been conceived and born.

(3) For more on those two adventures, see http://www.tumoriffic.org/Part%20I.htm.

(4) And for more on that huge adventure, see http://www.tumoriffic.org/Part%20II.htm

(5) For those many good times, see this blog from March, 2012 through 2016.

(6) The way I remember it is thus: 'Pem [is the] bro[ther of] Liz Umab.  See?  Easy Peasy.  Actually, it's a good idea to know the names of the drugs you're on.  It can be hard, since those names are complicated, but you can make up tricks like that.

Many of my troubles are due to radiation I received for cancer in 1981 and 2005.  To give you an idea of the effects of radiation, this was once a normal rubber ducky until she received 120 Grays of radiation.

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.