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!