Category Archives: heal and repair

the dreaded but necessary medical journey

plate shift or screws loose

Plates shift all the time.  In the earth’s lithosphere, the theory of plate tectonics describes how the continents drift over time.  Drift is barely measurable during a human lifetime.  Enough drift produces a shift.

I had been living in San Francisco, CA for six years when a plate shifted below the Loma Preita mountain north of Santa Cruz and caused devastation in the SF Bay Area.  I was in Hong Kong on a short trip at the time and could only watch the news and hope that those I knew were OK.

Nowadays though, I’m keeping my eye on another type of plate shift, one held in place by a set of screws.  I came to New York on a routine home visit and prudently had the periodic recommended CT scan on my neck/head.  The results showed the beginning of possible plate shift.  (Ahh, so that’s the reason my face has had that tingling feeling lately.)

The doctor who installed the hardware told me we could go in and take out the plate.  Plates or rods are installed in bones so that they properly set, after which the metal serves no purpose.

The scan shows that the screws holding in the plate may be coming out.  Not only that, there appears to be deterioration in the upper part of the mandible, the result of the gift that radiation, from five years ago, keeps on giving.  Taking out the drifting plate may be like “opening a can of worms,” the surgeon says.  The surgery could resolve the issue or complicate it.  There is no road map for radiation effects.

“Let’s take another CT scan in six months,” the doctor says, “and until then, just live life,…and make sure you don’t get hit in the face.”  I guess what he meant was try your best to prevent a plate shift.

In the meantime, if I hear someone telling me I’ve got a few screws loose, I’ll know they won’t be wrong.

nip and tuck

If only it was a face lift.  I could use one.  But this nip and tuck was to fix one side of my face and neck left somewhat distorted by the ordeal of the fibula transplant.  At the same time, the surgeon cut out a cancerous legion on my scalp the size of a half-dollar, leaving me with more stitches on my head, face and neck than I bargained for.

On the positive side, all the muck should result in an improvement.  Still, it’s not without putting up with a load of discomfort.  The other positive was that this procedure was done the day after Christmas and at NYU Medical Center, which was significantly more efficient than the last hospital.

It kills me to write about procedures and hospitals.  I had always thought of myself as resilient, healthy and fit, conscious about what I ate and diligent about daily exercise.  The year this mess started I peddled more than 20 centuries, half of them more than 125 miles.  In one 24 hour period I rode 325 miles.  On alternate days when I wasn’t doing something aerobic, it was anaerobic resistance exercise.  I didn’t take (and still don’t) any medication whatsoever.  I thought of myself as being in great shape.  Hospitals, surgeries and procedures were inconceivable.

So for the last four years of nothing but hospitals, surgeries and procedures and writing about the results, even if for record-keeping, means that the resiliency was a figment.  I’ve always admired a certain amount of hardness, perhaps coming from what I saw in my father.  Yet all the stitching and repairing may have been pointing to a weakness. Nevertheless, I’m thankful to be writing this, and eternally grateful to all those inside the medical profession and out who have helped me along the way.

Although being in an induced coma with the nervous system disconnected is the only way to get sliced up, I’m hoping that I’m finished going under general anesthesia for a while.  Seven times in the last four years has been quite enough.  If I had thoughts before about a full nip & tuck, then the soreness I’m feeling now has erased that idea.

new teeth

Three of them, for the price of one.  And a new piece of jaw, all integrated into a transplanted fibula.  Not the sexiest subject to write about.  In fact, may be a downright turnoff.  But the reason this blog started, in part, was to track the treatment, healing, and recovery process of tongue cancer, which turned into even more processes to treat the symptoms of treatments, leading to more healing and recovery.  Fact is, this post wouldn’t have been necessary if the mandible hadn’t gotten in the way, literally.

My grandfather had tongue cancer, more than likely from chewing tobacco.  The remedy, back in the day, was to have part of his tongue taken out.  I never did the tobacco thing but evidently a passed-down gene had me predisposed.  Fortunately, treatment today involves radiation and chemo, which most of us would trade any day to having parts of our body cut out.  Still, a few decades from now we’ll look back at the radiation process of this era as brutal.

Excess radiation required reconstruction of my jaw (so a part of my face came out anyhow).  Hopefully, I’m finishing the last phase of the painful process this month.  A few days ago I received permanent implants, the result of a seven-month undertaking involving the addition of (more) titanium hardware in my mouth.  But hey, I’ve still got my tongue and I’m thankful for that, even though it received a beating from the installation, resulting in a couple of doozy ulcers and bruises.

Next up this week, I’m back under general anesthesia for touch-up surgery.  With luck, I’ll be good to go by the end of this year.  Not quite as good as new, but I should be able to get those pirouettes back in satisfactory alignment.

There is no violin playing here.  Just record keeping, with a renewed effort on counting those lucky stars, and for the time being, those new teeth.

dwell time

A few years back I was involved in making lots of graphic tees for a few large well-known apparel brands.  The projects required quite a bit of time in print shops.  Graphics run the gamut of complexity from a simple one color print to 14 colors with special effects.  No matter, the garments on which the graphics are printed all go through an oven with a conveyer belt — in one side and out the other, dried and cured. Depending on the print and ink type, the oven is adjusted for temperature and belt speed.  Too little time on the belt and the print would not dry correctly.  Too much time and the process was not efficient or the ink medium would burn.

The process is similar to drying fabric as well as baking almost anything in an industrial environment, like cookies, crackers, you name it.  Whatever it is, the time the item spends in the oven is referred to as “dwell time.”  Successful dwell time is dependent on correct calibration (of the oven).

Dwell time is simply a period of time something or someone remains in a given state.  It makes sense that the longer we dwell in an environment or circumstance, the greater the chance that the circumstance will have a proportional effect on us.

A plunge into a body of ice cold water, the danger of hypothermia is relative to water temperature and dwell time.

We calculate how we dress when temperatures are extreme, depending on dwell time in the elements.  At 110 degrees outside, we may dress differently if our commute is a 30 minute walk vs a drive in an air conditioned vehicle.

Online marketeers measure dwell time as the length of time a visitor spends on a page before clicking further.  The longer the dwell time the better (absorption of content).

Recently I was told of a family living together in an emotionally toxic environment, the husband fearful of the wife.  They both dislike their lives together, hanging on only for the children.  Dwell time in that household is out of calibration and having damaging effects.

Thing is, every situation has its favorable amount of dwell time.  Part of life’s fun is figuring out what those ideal dwell times are.  We want to invest the right amount of time into projects, relationships, conditions, or situations to make sure they have time to hatch or cure correctly, without overstaying our welcome with undesirable outcomes.

From time-to-time our thoughts may float far too long (or not long enough) on a subject where dwell time wasn’t or isn’t given enough consideration.  My thoughts keep coming back to my face and neck.  I know dwell time on the subject has been well cured and over-baked.  Our thoughts need the correct amount of calibration for successful dwell time on any subject.

The dwell time of my chopsticks holding noodles over a bowl of soup today exceeded it’s time as evidenced by broth splatter on my fresh white shirt.  And right now, the dwell time thinking about dwell time may be better off spent dwelling on a post that’s not so half-baked.

How’s your dwell time?

this morning's stretching and thought gathering dwell time

this morning’s stretching and thought gathering dwell time

abnormal normal

If only I was getting used to it.  Waking up in the morning to a swollen face that wasn’t there when I went to sleep is just not that easy to swallow.  It was two weeks ago to the day.  Saturday evening after work I stopped for nightly takeout, watched a netflix video with the help of a vpn service, and was in bed by 10 pm.  The reflection in the mirror after splashing water on my face Sunday morning confirmed what I felt.  I’m fairly certain I wasn’t punched in the face.  It hadn’t been quite two months since my last operation.  The door was locked and there was no one else here.  Where did the beating come from?

The swelling has since subsided somewhat, not all.  As a precaution I’ve been popping antibiotics.  Such a royal PITA.  It’s not like I can go to any old medic and have them take a look.  What’s been done to my face and neck is not near normal.

So that my face wouldn’t feel so special and since I’m in the land where the practice began, last week I started a series of acupuncture treatments for the overly stiff neck.  My associate recommended a natural-healing hospital clinic.  It’s more like an always-busy processing plant.  After an initial consultation with the acupuncturist, with others standing around listening and staring as I was talking through a translator, she points to a bed, (luckily there was one in the dozen empty), where I lay down and she jams about ten needles in my neck, plugs in an electromagnetic pulse machine and hooks them into four of the needles, then walks away.  Thirty minutes later an assistant takes out (almost all) the needles and walks away.  That’s my queue the session is over.  (He overlooked the needle in my hand, but nothing I couldn’t manage on my own.)

as holistic as it gets

as holistic as it gets

The acupuncture specialists says I may not feel too much different after the treatments but it’s worth a try.  The first series is 10 sessions.  If that makes a difference, then 10 more.  I’m half way through the first set.  So far, nothing.  The choker chain is tighter than ever. But anything is worth a try.

It remains thrills a minute.  With an extreme stiff neck and a lopsided fat face, I remain giddy over the idea that the symptoms will calm down enough that I’ll be in a place of abnormal normalcy.

fat face again

I had slightly prepared and knew it was coming.  I guess if you drill titanium pins into bone, you should expect some swelling.   And if those pins and that bone are in your face, well…….

It’s still a wait-and-see process, as I’m popping prescribed antibiotics and rinsing with medicated mouthwash to keep infections at bay.  With some luck and the help of the stars, I’ll end up out of the woods soon.  The successful result will be a game changer, as they say.

The denture contraption I’ve been using helps control speech.  The apparatus is more than teeth (which I cannot use for chewing).  It’s a solid base to replicate the missing section of jaw.  It was meant as a temporary solution and serves not only a cosmetic purpose but also provides enough pressure to keep the opposing upper teeth in place.  Because of the depth and mass of the piece, it requires a plastic bridge braced across the base of my mouth as it clips onto other teeth.  And because it’s impossible to keep food from getting underneath the plastic, I’ve got to remove and wash it, and my mouth, thoroughly after eating anything.  Not so bad if I’m near soap and water.  But in places where sanitarily washing is not available (airplanes, certain restaurants), the process is more tedious, which means anticipating and removing the contraption prior to eating.  As sharing food without the denture means my speech is affected, business or social meals can be a bit more humbling.

Am I cryin?  No.  But do I want to live the rest of my life with that?  Preferably not.

There is an intermediate denture solution, which involves making studs and caps out of a couple of good teeth to hold a similar structure but without the large plastic bridge on the floor of my mouth.  But I can’t bear the thought of grinding down good teeth.

The procedure I had this past Wednesday, if successful, would be the ideal solution, even if the process entails a hefty payment, in more ways than one.  It would eventually eliminate the need of the contraption as I’d end up with actual (fake) teeth.

The first major step after the detailed calibrations by the specialist involved a trip to the hospital operating room.  There were about 10 scrubbed professionals all busy doing something by the time I laid down on the OR table and was strapped in.  There were lots of tools laying around and as I started asking questions, I was poked with an IV and was somewhere beyond dreamland.  Two hours later I was woke up in the recovery room with three titanium set screws firmly planted in my mouth.  If all goes as planned over the next 3-4 months, the pins will integrate themselves with the bone allowing a substructure to be installed, and on top of that, new permanent fake teeth.

It’s none too mundane to think of having teeth supported by a vascularized leg bone transplanted to the jaw.  Rather quite fantastic.  If it all works out, I’ll have an almost fully functioning left side of the mouth, something I’ve been without the last couple of years.

As the fat face subsides and my mouth becomes less sore and more familiar with a few new metal parts, even though I’d rather not write about this saga (it was the original intent of the blog), I’ll gladly accept this process as payment to write this post, and maybe a few others, about what it’s like to fill, more permanently, a quadrant of my mouth left empty two short years ago.

scope job

Most of us like to know what we are in for or what to expect.  Generally, we seek to avoid surprises, unless it’s a winning-the-lottery type of surprise.  We research, scope things out, with the intention of minimizing a downside surprise.  Still, surprises are a surprise at some point, whether we scope them out or not.

This past Friday I submitted to a deep scope.  Not something pleasant to write about, but screening scopes are recommended after middle age hits — its purpose to eliminate potential future surprises.  Our bodies have a tendency to manifest weird stuff after we turn 50.  So resilient is our biological machine that it takes decades of abuse (from inability of coping with stress to eating oreo cookies) before abnormalities start showing up to surprise us.

After 50 we are reminded that a periodic (every 10 years) colonoscopy is a proactive scope job to have done.  The downside of the scope job is a slight bother of time.  The upside is a good cleansing and peace of mind.  Not a bad investment.  Still, I put this off for a decade as the idea of this scope job was less appealing then it turned out to be.

The last time I submitted to a deep scope job, it was down my throat through the mouth.  I’ve been scoped plenty of times through the nose to the throat, but to get to the stomach, it’s through the mouth.  Three years ago I was working in Colombia while trying to determine why my throat was sore even though I felt good.  This, after a couple of smart doctors mis-diagnosed the base of tongue tumor, after repeated scope-through-the-nose-down-the-throat jobs.  One doctor recommended a stomach scope job — a longer, thicker scope than the nose scopes.  When I arrived to the scoping facility, I was informed I could submit to the job asleep or awake.  The caveat with anesthesia is having someone there to take you home.  Since I was alone I elected the awake option.  Not much longer and I was looking at the inside of my esophagus on a TV monitor, mouth wide open, as I was in the process of swallowing a tube with no end.  They saw nothing irregular, evidently missing the large bulge on the base of my tongue.

For the scope job this week there was no awake option.  It was asleep or no scope job.  Fortunately all went well and the clinic sent me home complete with photos as proof that they did their job, although the photos could have been an internal canal of just about anything.

The person who does the scoping, from either end, is usually a gastroenterologist.  And if you are going to be scoped out, you want it to be by someone who has done lots of scoping.  My guy calculated he’s done well over 10,000.  He seemed too young to have done so many, but if he does 20 per week (his schedule) and works a full year, a decade of practice would yield him about 10 thousand scope jobs.  The driving incentive for a person to get into this type of scoping profession is something I’m not likely to scope out.  But if it weren’t for scopers, we’d live with more doubt and rely more on guesswork.

The only pain of the entire operation is the IV.  It’s not like I don’t have good veins for needle poking, but some nurses seem to fiddle and have a hard time.  The person you want inserting an IV is someone who has done it 10,000 times, but you can’t screen for the IV giver.  The nurse for some reason was fiddling too long and the vein barked back.  It was a small price to pay for an otherwise uneventful and painless experience.

GV had a scope job a few years ago as her family is predisposed to the big C.  She reminded me of the scope job benefits — elimination of unwanted surprise and an opportunity for a top-to-bottom cleansing.

There are things we can scope and things we can’t.  If it’s reasonably scope-able and it makes sense, then a harmless scope-job test has nothing but upside benefits.

out of the woods

The idiom as we all know it means “out of danger” or “free from difficulty.”  We use it casually, in business, and in medicine.   Our economy has had positive indicators recently but we are not out of the woods yet.  It appears that Lucy’s fever has gone done, but she’s not out of the woods.

Last year, when they transplanted my fibula, complete with veins and artery to my jaw, they built a scaffolding on my neck with a flap of skin from from my leg that they pricked with a needle every hour or two.  They did that for four days to make sure it kept bleeding before they proclaimed me “out of the woods.”

The world is full of idiomatic woods.  We end up in them, find our way out of them, then find them again.  The woods are all over the place, some thick forests, others lighter patches.  Some woods we end up in before we realize we are in them.  It’s like the woods are growing around or within us, yet unbeknownst to us.  When we least expect, they appear, seemingly all of a sudden, and we are in the thick of them.

During the lead-up to the financial disaster, when the economy and housing market was bustling, the woods were brewing.  Before Lucy got her fever and without her knowledge, the woods were incubating.

This past week I had an appointment with the maxillofacial specialist to review the plan for permanent implants, which would require surgery and is a 3-4 month process.  The evening prior, my jaw swelled up for the first time since the operation.  It was weird, and scary.  When the doc saw me, he wanted me to see the surgeon who had done the job.  They took an x-ray and couldn’t readily detect anything.  Since then the swelling has subsided but having had ORN, where the jaw is concerned, I may not be out of the woods for a while.  Having already had an issue with the radiated bone, it’s hard to tell where the woods end.

Being deep in the woods can be darn concerning, bordering worrying.  Then again, the woods are the woods and we can’t change their nature.  It may be wise then, to throw concern and worry to the wind in hopes of gaining comfort with the woods.  There is a certain life force in the woods that is reality even it the outcome is uncertain.

When we are in the woods, we look for a way out.  We never look for a way in.  But if we find ourselves deep in the forest, all we can do is make sure our bearing is where we think it should be and march forward.  No reason to dislike the woods.  Sometimes they are just there.

one year out

We are all one year out from something.  What were we doing the year before on this date?  Every once in a while, events are memorable and we mark them.  Our birthday was the first memorable event (for someone).  We mark graduations, weddings, and lots of other important dates.  Our local TV station, NY1, looks at one year out (or maybe it’s “this day in history.”)

This day last year I was in the recovery room at BI medical center conjuring up ways, if I had to go through a similar operation again, I could take an easier way out.  What came to mind was rowing into the ocean with cinderblocks tied to my legs and heaving them overboard.  I never had thoughts like that before, but lying in bed with a cast on my leg with significant pain despite heavy medication, a hole in my throat making breathing difficult, several other protruding tubes, and the left side of my face swollen to several times its size, the thought of how to avoid being in that situation again was all I could think about.

But now it’s been one year since my left fibula, including veins and artery, was cut out and wedged into my jaw where a large portion of my mandible was removed.  The surgeons made it sound like it was a two month recovery.  Really, it was much longer.  After one year, it feels like I’m still healing.  In all fairness, it wasn’t’ until after the operation that I was told it could be a year or more to fully heal.

When I look back at the process of what happened when I caught that bout of throat cancer, there is no doubt I would not have done things the same.  I would not have let the nice doctors scare me into operations I didn’t need.  But it’s futile to think that way.  It’s  not however, futile to write about it.  It could be that someone reading this may give pause to submitting to the our medicine’s doctrine of “if it looks bad, cut it, burn it, or poison it out.”

I can only compare myself to one other person I know of who had what I had, Michael Douglas.  We went through the seven weeks of external beam at about the same time, for the same thing, same location on the tongue, and the same stage 4a.  The difference is, for some reason, my doctors convinced me I was lucky to have the opportunity for brachytherapy and while I was at it, a neck dissection.  They said my recovery chances improved significantly by having this therapy and that there weren’t many places in the country performing this on the base of tongue.  The net result was I had enough radiation to destroy part of my jaw and royally bitch up my tongue and throat.

The result, one year out, is that I’m living a new reality.  My neck is so tight that the outside looks like overstretched rubber bands.  It feels like I’m sporting a tight chocker collar I can’t take off.  On the inside, it’s harder to swallow food.  During exercise, it’s a challenge to drink water.  Inside my mouth, the entire bone that held my lower left quadrant of teeth is gone.  The hole left behind, coupled with the dead left side of the tongue, causes me to lisp and slur words at times.  At no time is my speech normal (to me) anymore.

Eating is something I’d much prefer to do alone.  Because my throat is tight, food that isn’t liquid doesn’t go down so easily and gets caught.  Therefore, I constantly need to cough up stuck food and re-swallow.  It’s not pretty and I’m not crazy admitting or writing about it.  If I can’t avoid eating with others, I’ve got to sneak a temporary contraption out of my mouth.  This piece of plastic and metal has some fake teeth which makes it easier to talk and somewhat fills the hole, but it’s not made for eating.  Taking it out means my speech gets sloppy.  Therefore, it’s simply more comfortable eating alone.

Although I’ve been lucky enough to have ridden several century plus rides this year with no downside, running on the fibula-less leg is abusive and I pay for the experience.

Forget the cosmetic aspects of all this. No one cares about their face in the mirror, right?  The scar that runs from behind my left ear to under my chin is still sore and notably visible and is a stop-gap for lymphatic fluid which should flow through the system but instead collects at the scar line.  My cheek has an indentation where the bone was and one side of my face is larger than the other where the metal plate and permanent swelling remains.  When I smile or open my mouth, the left side doesn’t open like the right.  There’s been nerve and muscle damage from the slicing.  My mouth does not open near as wide as it once did.  A sandwich?  Forget it.  Not only am I not able to fit most sandwiches in my mouth to bite, unless it is bathed in goop I wouldn’t be able to choke it down.

I’ve never liked chewing gum.  Since the main saliva glands were killed in radiation, gum chewing is a savior.  The action generates just enough saliva that it’s a relief from having a water bottle tethered to my side.  And of killed glands: maybe they didn’t whack the thyroid, but it’s not what it was.  A recent blood test shows it’s outside normal range running quite sluggish.

The long and short is, the therapies the medical community used to get rid of the cancer tumor created a host of other hellish problems.  Is it better than cancer?  I don’t know.  Is it better than being dead?  If I don’t need to go through anything more, yes.  Being that radiation is the gift that keeps on giving, the jury is still out on damage that may appear in the coming years.  This was information not shared at sign up.  Michael Douglas is out there making movies and singing whereas my speech and eating abilities have been seriously hampered.

None of this is a complaint.  Far from it.  It’s my new reality.  It’s also a chance to objectively document my state-of-physical-state.  I’m busting with gratitude that I can still pounce on cockroaches.

We all have things we think about in the past that we’d do differently if we ever had that impossible do-over chance.  The only non-futile part of that thought process is that it’s a recognition of a rich experience.

In a couple of weeks, I’ll go see a two maxillofacial experts to evaluate whether installing permanent implants is a possibility.  If so, the first step would involve another trip to the operating room.  At least no hole in the neck would be required this time.

Knowing that last year at this time I was in an intensive care unit dreaming of ways not to exist, I’m feeling a world better one year out.  As long as the radiation effects from two and three years ago stop with the new gifts, I’ll be content lisping and choking, and maybe riding a few more centuries.

Now off this post-face job category.