And, We're Off!

Quick announcement: 

I am back at work.  Make an appointment if you need it.

Second quick announcement:
(You may not be ready for this, and it may shock you.  Really, you might want to sit down.  Ready?)

You have more than one sphincter.  Yes, you.  In fact, you have many sphincters.  ALL OF YOU!  Ponder that!(1)

OK, no more announcements. Back to the story!

About a week ago, I got a port.  Port is a fortified wine that originates in Portugal.(2)  I am drinking some right now.  I find port delicious. 

However, the kind of port I've got in my chest is used to deliver chemotherapy.  My new port is more formally known as a portacath.(3)   It is a thin, hollow tube (about 6" long) that goes into a major vein of your body attached to a small disk (about three quarters of an inch wide) that is surgically implanted just underneath the skin of the chest.  A special needle can be inserted through that skin fairly painlessly, allowing easy access to the vein for medicine or for blood draws.  It's a lot nicer than getting a needle stuck in the arm every few weeks or having a tube hanging from the side of my arm all the time.

So, a week ago, in the same way they stabbed in the groin and inserted an arterial catheter into my artery in November, Dr. Abe Porta, Jr. stabbed me in the chest and inserted the portacath.  Then, he left it in and sewed up the wound, leaving a little disk under the skin of my chest that is attached to the catheter in my vein. (4)  

After we got home from the port procedure, in the last 45 minutes of December daylight, I took Willow to the woods up the hill, and she hopped her heart out while I took a little hike in the snow.  Then while K/BWE had her usual Wednesday night 'girls' night' with her friends, the Professor and I went out to our favorite restaurant with HB and his son for dinner.

That was last Wednesday.  My first pembrolizumab infusion was last Thursday.

My first appointment at Man's Best Hospital was at 11:30am.  K/BWE drove me into Beantown.  We hit traffic, so she had to drop me off and go park while I rushed to the seventh floor.  I was called in, a medical assistant took my vitals, and a nurse inserted the special needle in the special place (my port).  She drew some blood and left the needle device in the port with a tube attached so I could be hooked up to an IV.  I went back out, and K/BWE was in the waiting room. 

Almost before I sat down, I was called back in to see Dr. Manhattan.  This time, her pants were not leather, but, as before, she had a warm, reassuring manner.

I asked her about work.  I had already been back for a few days, but could I expect to be there for my patients long term?  "Is it fair for me to let my patients book appointments with me for a year from now?"  I asked.

"Yes," she replied.  She said that, even though it's cancer, this tumor has probably been growing for years, hidden beneath inflammatory schmutz.  It is reasonable to think that I could still be here in a year from now even without treatment. 

No one had said anything like that in all this time.  I felt like a load had been lifted from my shoulders.  Then I felt angry at myself for giving up those season tickets to Wrestlemania.

As for treatment, she repeated that most people have almost no side effects at all from pembrolizumab.  Right before my third treatment cycle, about 5 weeks from now, I will get another MRI.  If the tumor is standing still, or, better yet, getting smaller, they will continue the pembrolizumab, checking with an MRI every 9 weeks.

Building on what she had said the week before, she told us that, even if pembrolizumab fails, there are vast numbers of drugs being developed for this type of tumor.  "We have more clinical trials than we have patients."

Then, K/BWE were sent upstairs to the sweetest infusion suite of all time.  The hallway on the way has a floor to ceiling window on one side, and the view is fabulous.  I got my own infusion room.  If I schedule it, I can get a massage therapist to come in during my treatment.(5) There was a lounge singer and piano at the nurses' station, and there was a bar with free drinks.  (That last sentence is entirely false.)  Half an hour after the infusion started, they unhooked my port, and home we went.(6)

I've been feeling fine, although tired sometimes.  Still working.  Still hiking with the dog.  Still enjoying my family.  (Let's not forget the cat.  Her too.)  It's not over, but there is time, and there is hope.

P.S.  I need a name for my little companion/tumor, and I am asking for suggestions!  This tumor has been here for a long time, and he will probably continue to be here for a long time even if they eventually poison him into nonexistence.  However much I wish he had never shown up, he is truly a part of me, but what shall I call him when we have our heart-to-tumor talks?  Ideas, please!

(1) I am serious.  I have been to medical school, and they taught us stuff like this.  You have two anal sphincters--an internal one and an external one.  Try and clench them both.  Good.  But that's just the beginning.  You also have a urinary sphincter, which you might expect. But there are fifty more, such as your sphincter of Oddi.  That sphincter is named after the dog in the Garfield cartoons.

(2) The drinking kind of port was actually instrumental in getting me and K/BWE together.  Long story.  (Actually, I am going to get a glass right now.)

(3) The portacath was invented in 1992 by Dr. Abe Porta.  (Oddly enough, he is the great grandson of the man who invented the portapotty.)

(4) The vein I am talking about is my superior vena cava.  It is a giant vein into which the veins of the upper part of the body.  The veins of the lower part of the body empty into the inferior vena cava, but, really, no veins are truly inferior.  They are all special.

Regarding the procedure, technically speaking, it was more of a cut this time than a stab.  I won't go into detail, because it's gross, but it was not nearly so unpleasant as I thought it was going to be.  The oldies music that MBH has is much better than the music at Wicked Famous.  All I felt were a few lidocaine injections, none of which were bad at all.  Really, the only downside of the whole experience was that I could not make the surgeon laugh while he was putting it in.

I have to lay off upper body exercise for a few weeks after the procedure.  Prize fighting will also have to wait.

Meanwhile, that last crack just sent me into a Google deepdive into 'senior' boxing.  I don't qualify yet, but, in less than a year, I will.  Apparently, there is even something called 'chair boxing,' which sounds horrible.  This is even endorsed by the Livestrong website, usually a pretty good source of health information.  (https://www.livestrong.com/article/545699-boxing-for-people-over-50-years-old/ ).  As a primary care doctor, I'm horrified.  The whole point of this 'sport' is to give your opponent a concussion.   Not OK.

(5) Meanwhile, some of my patients can't get their insurance companies to pay for basic asthma and diabetes medications.  I was just talking to a patient with this problem today.  It is a strange system.

(6) I just spoke to a friend with cancer who recently had chemo at a hospital in a wealthy suburb near here.  So, want a short stay in a room with a view and free access to a massage?  Get cancer, and go to a fancy hospital.  It's a great deal!    

Game On!

Friday was the day of the eventful event, and frankly, it scared the bejiggles out of me. But Friday will be the second part of this post, because, well, I'm avoiding it.  

I am going to tell you about yesterday first.
 

A lovely day (except the waffles)

Yesterday, I awoke at about 10:30am to my cell phone ringing.

Groggy, I looked at the phone and saw the name of one of my favorite people, Dr. O'Suave.(1)  I pressed the screen to answer, but heard nothing, because my headphones were still plugged in, and I wasn't wearing them.  Fumbling, I pulled them out of the phone, but I still heard nothing.  Then I realized that the phone was bluetoothing to my hearing aids, which were charging, and therefore not in my ears.  Luckily, I somehow figured all that out before O'Suave hung up. 

My friend was on my doorstep at that very moment.  I had forgotten that he was passing through town and making a detour on his way home just to have brunch with me.  Oh crap, I had flaked on him AGAIN!(2)  Quickly, I put myself together, answered the door, and off we went.  I had a place in mind. 

The Trafalgar is a restaurant a couple of miles from my house.  I have passed it multiple times, and it has the warm look of an old English pub with a slightly modern flair.  There is a sign advertising brunch, which is my favorite meal, so for years, I have meant to check it out.  Today was the day. 

We entered and were greeted by a time-traveller from a Victorian working class neighborhood.  "'Ello, guv'nuh!  What'll it be today?"

Seated across from O'Suave, I ordered my favorite breakfast--Belgian waffles.  Belgian Waffles are among the greatest culinary inventions of all time and a great tribute to the Belch people.  They are delicious and simple.  Who can mess up Belgian Waffles?  Well, the Trafalgar can! 

The first waffles were burnt.  Normally, even if you burn Belgian Waffles, they are still soft and spongy inside.  Not these.  Solid all the way through.  So I sent them back.  The next try looked perfect--an even, golden crust.  But when I tried to cut into them, it was like cutting into a ceramic bowl.  They were so solid that they rang like a bell when I tapped them with my fork. I gave up and settled for eating the berries on top.(3)  Later, the Victorian waiter seems to have popped back in the TARDIS to visit his old friend Charles Dickens or something, because it took a ridiculous amount of time for him to bring me the second cup of coffee I asked for.  The whole experience was so bad it was funny. 

O'Suave and I laughed and had a great time as we always do.  Sadly, the visit was short, as he had to start his long drive home as soon as we finished.  But it was great to see him.

The day continued on a bright note.  In the cold but beautifully clear afternoon, I took Willow on a 3-mile hike in my favorite local conservation area with another of my closest friends, HB, whom I have mentioned in this blog before.  HB and I walked and philosophized, while Willow ran around in the snow like a maniac, rolled in foul things, and played with passing dogs. 

And then, in the evening, K/BWE and I had dinner at the home of our dear friends R and Che.  I have known Che since the first day of my freshman year in college, and our conversation has continued virtually uninterrupted since then. It was very good to see them both and to be seen.

Then we came home, and I took Willow and Katie on a walk to the end of our street.  The dog carefully searched for the ideal place to pee while the cat lurked in the bushes, as is her routine.

After that, I goofed around with the Professor.  I still make him laugh sometimes, and that's pretty good for the father of a 16-year-old.

It was a lovely day.  And I have been talking about that lovely day to avoid thinking about the great big, ugly, 500-pound gorilla beating its chest in the corner of the room.

Freaky Friday

We knew what was coming.  K/BWE and I have read the latest medical literature.  There aren't too many options for what is to come.  But Friday made it real to me in a way it had not been before.  On Friday, we would meet Dr. Manhattan and get this party started.

I had some trouble sleeping on Wednesday night, but Thursday night was a complete fiasco.  I couldn't sleep at all.  I got out of bed and wolfed down some leftover Miso soup and three bowls of Cocoa Krispies.  Then, I went back to bed and huddled under the covers, trying desperately to doze off.  No luck.

My alarm went off at 5:50am, plenty early to make our first appointment at 8:30am.  Slug as I am, K/BWE still had to practically drag me out the door so we wouldn't be late.  We took the Red Line (subway), which dumped us virtually on the doorstep at Man's Best Hospital (MBH).(4)  No more avoidance.

The first stop was to see the Chief of Head and Neck Surgical Oncology, Dr. Viol.  I had met him before, years ago.  He is a low-key and mild-mannered fellow. Dr. V. looked into my nose at the great emptiness left by the Surgeons of Steel.  He was impressed. "Wow!  They really cleaned you out!  Nothing else to do here." 

Then he reviewed my terrifying MRI with us.  Noticing the loving way the tumor wraps around all the nerves that control the movement of my right eye, he cried, "dude, wait a minute!  You can still move your right eye?  Rad!"  (But maybe not quite in those words.) 

After the appointment, Dr. V. happened to be taking the same down elevator we were taking on our way out of the building.  Someone's cell phone rang.  "Is that you?" K/BWE asked. "No, honey," I replied.  "I haven't been able to make that sound since the surgery!" Dr. V. cracked up.

He walked outside with us and pointed to the main hospital building, where I was to have my fateful appointment with Dr. Manhattan, oncologist extraordinaire.

After briefly getting a bit lost inside the building (it's almost as if we were distracted or something), K/BWE and I finally found our way to the correct waiting room.  They called me immediately, grabbed my blood pressure, temperature, and weight, and put us in a room. 

Almost instantly, in strode Dr Manhattan, a tall, slim woman with long gray hair, wearing a stylish bright yellow jacket, and black leather pants (I am not kidding!).  She was followed by a tall, broad-shouldered, slightly stooped, and bespectacled man who looked like a balding Alex Trebeck.  That was Dr. Zap.(5)

Back in 2005, Dr. Zap was the one who took a giant proton beam phaser and burned the area in my head where the tumor of the time had lived.  He spoke to me first, because he had another patient waiting to see him.

"Tom, I don't have much to offer you.  Last time we met, I gave you more radiation than Chernobyl and Fukushima put together.  It is good to see you again.  But no more radiation for you so long as you have a single other option."

Then it was Dr. Manhattan's turn.  Despite her glamorous outfit, she was warm and down to earth.  She told us how much she had loved my Aunt Glenda, who was the director of her medical residency program.  She told us how Glenda had advised her to come to MBH, and that she has never regretted taking that advice.  She asked questions; she looked each of us in the eye; she told us the options; and she listened.

As we already knew, the main course will be pembrolizumab.  I can have it with or without a side of conventional chemotherapy.  Of course, I will not touch the chef's preferred chemo--cisplatin.  As I wrote before, that made me pretty deaf in 2005, and I will not risk what remains of my hearing on the smidgeon of a chance that it might help. 

Another option is 5FU.  5FU is one of the oldest chemo drugs.  They have found traces of it on the skeletons of Neanderthals! (Not really.)  However, it is still useful sometimes.  But I'm not interested at this point.  There is no good evidence to show it will help in my situation, and it would make it harder for me to work, play, or you know, not feel like complete crap all of the time.

It's going to be pembro, and pembro alone, at least for now.  The first infusion of pembro will be this coming Thursday, and then I will have an infusion every three weeks until who knows when. I'll get periodic MRIs to track the efficacy of the treatment - if the tumor ain't growing, we keep going.

If you're a scientist, even though pembro is the best there is, the odds don't look that great--maybe 20-30% of patients have done really well and stayed alive on it for years.  There are other options to try if it fails, but all of them are longshots. And whatever fantastic new treatment might be out there on the horizon is still way out there.  On the other hand, I have beaten 4 out of the previous 4 tumors.  I'm a pretty good bet, when you think of it like that.

So, game on!

(1)  O'Suave is a beautiful and kind doctor from Brazil.  We met while in the fourth year of medical school shopping for residencies.  It was at Hippie General, the hospital where we both ended up.  We have been fast friends ever since.

Before he moved south to the City of the Bell, our families would go skiing together on every MLK day.  The last time, just after he moved, we went to a place in between.  It took a long time to get there, and it was unbelievably cold.  On my last run, I fell backwards, hitting my helmeted head hard enough to make it spin.  That was it for me and downhill skiing.  If I did it again, especially after the recent surgery, I am afraid I would fall again, hit my head, and my cranium would detach and bounce down the slope like a basketball.

(2) I have a history of flaking out on O'Suave.

For example, O'Suave once organized a talk in my town featuring Dr. Mark Crislip, one of my heroes.  Crislip is famous for taking down the pseudoscience nonsense that has become fashionable in some circles.  O'Suave told me all about it well in advance, knowing how excited I would be.  But I somehow forgot to arrange for a day off, thus missing a talk by Mark Crislip and a wonderful favor from O'Suave.

There are several other similar stories, which I won't bore you with here. Suffice it to say that I'm embarrassed by how many times I have flaked on him.  But, kind man that he is, O'Suave always just laughs and forgives me.

(3) I suspect they precooked and froze these things, microwaving them on demand.  What the smell?  Belgian waffles are the easiest, fastest things to make on Earth!

(4) 'Man's Best Hospital' is not my invention.  It comes from Samuel Shem's Blasphemous story of medical training, House of God.

(5) My parents think Dr. Zap is the devil.  In dark moments, I have thought so too.  After all, a lot of my problems since 2005 have been due to his work.  The radiation Dr. Zap gave me melted away the beautiful post-surgical reconstruction of the right side of my face.  It created all the dead and dying muck at the base of my skull that plagued me with infections from 2005 until the day this summer when the Surgeons of Steel cut it out of me.  I have had at least 3 small strokes from that radiation, and this new cancer may be from it as well.  Sometimes, I have raged at the memory of him.

But the bottom line is that in 2005, I had a deadly cancer.  The surgeons had done nearly all of the work, but they could not get what they call "clear marigins," and the chemo they gave me before the surgery turned out to have been pretty useless.  There was more to be done, because with cancer, 'nearly all' is not good enough.  Radiation was needed to make sure that any remaining cancer cells were destroyed.  All the doctors agreed.  I agreed.  K/BWE agreed.  We asked Dr. Zap him to do whatever necessary to save my life, and he gave me the best treatment that science had to offer at that time.  It may be that I wouldn't have been here to watch my son grow from two to sixteen years old without him.

And so, on Friday, it was good to see him, too.  He was an old friend from the last war, smiling at me sadly.

Willow says we're going to lick this tumor!

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.