Scheduling Surgery

Today it was the oncologist, Barbara Burtness and her fellow, Pat Boland. Barbara is the one we'll think of as the doctor who managed an education in spite of wasting all that time at medical school. She knows Scandanavian literature, she has opinions about translations of Dante, she raises her eyebrow at my reading him before discussing life and death and laughs with relief when I tell her that I keep Epicurus at my bedside.
She has some thoughts for me. The first one is that she sees the PET scan as good news. Cancer, she reminds me, is rarely subtle and never shy. The fact that the active area that lit up the scan is shrinking probably means that the threat is shrinking too. hip hip.
And she's concerned about the growth that's sprung up on the floor of my mouth. (Of course mouths have a 'floor'. They have rooves, don't they?) I've been concerned too. The new growth is an opportunistic little fellow, expanding like a third-world economy. Let's get it out as soon as possible, OK?
Well, OK. Of course, surgery means another little flirt with death, but Death is our friend, remember? He's the one who reminds us to watch the flight of the flowers and smell the butterflies. So I have to make plans.

The operation itself is a matter of whacking out a piece of lower mouth and seeing what happens to your native song. It reprises, in a way, the questions I had when this whole thing started: Will I be silenced before I'm silenced? If I have to say goodbye to taste, do I have to say goodbye to words? At least this procedure doesn't seem to threaten the taste and smell, although I may have to eat pablum for a while. There may be more radiation or chemo that start the whole nasty business again, but. No matter, my questions right now are about talk and timing.

My friend Ginni wants to come down from the wilds of upstate Pennsylvania and spend a long lunch. Peter asked me to talk to his students about strategies for selling wine and beer. Dolly wants to scatter the ashes of our old friend McManus. And Julio! Ah, Julio. My old friend is coming in from Viet Nam for a day or two. If there were a bodhisattva of charm and education, it would be Julio. A conversation with him is like a night at the opera, Groucho included. A dinner with him is a symposium, lunch is a truly comedic sit-com. For a Spaniard, he's not so bad.
(One day Julio ran into my ex-wife. She said "Knowing you was one of the best things about my marriage." I can't even hold that against him.)

 I consult Epicurus. I browse through the Diamond Sutra. The surgery can wait. We'll bake McManus into bread and feed him to the pigeons, I'll lunch with Ginni at the mall. Perhaps my daughter will bring her boyfriend and we'll have a chat and Julio and I will condense a year's worth of conversation into a day and a half. Then J and I will go to the ocean and we'll glide along the bay. I'll indulge my lecture fantasy one last time. There will be oysters and there will be beer and when I see the good doctor, I'll thank him.
•   •   •

Today, while I'm getting my blood drawn, there's a throat cancer guy in the chair next to me who looks like I did six months ago. We get to talking and I find out that he's not eating and he wonders what I learned. I talk to him about shakes and ganache and I really wish I could tell him about dancing in the light, or applauding the butterflies or walking the dog in the woods.
As I leave the bloodsuck room, I realize that all I really hope to gain from this blog and this illness is the chance to make it a little better for someone else. Why would you recite your own agonies  if they didn't lighten the pain of someone else's? I want to stand in front of a room and, instead of telling the people about italian cooking from 1536 on, let's say, tell them about the humor and power and transformative chill of radiationdays.

A Slightly Alloyed Relief

When they refer to the PET scan as the gold standard in cancer diagnosis, they never said anything about pure gold. Nope. The test could be the 18-karat standard or even the 12-, 10-, or 8-. I guess lower karats are possible too. Maybe the bullion is really bouillon and what they meant is 'the chicken soup standard'.
Anyway, I realized that I could be waiting a week or more to find out the results of the scan. I called Tom Galloway's office. (Galloway, you'll remember in one of those doctors who gives thoughtful, detailed answers to questions.) I told his assistant that I had no problem with bad news over the phone, but I was less comfortable with no news at all, so would they please let me know when the scan had been interpreted.
Dr. Keller called the next day. She is Galloway's apprentice and I like her too: for one thing, she seems to be aware that the lump of flesh in the examining chair is a person. For another, keller means cellar which makes me think of red wine and evocations of lost loves are-in this season at least- kind of tender and sweet.
"We have the results of your scan. It showed minimum residual activity of uncertain significance."
"Is the tumor gone?"
"It shows minimum activity."
"Does that mean it's still there and growing?"
"It's of uncertain significance."
"What does that mean?"
"We're happy with the results."
•   •   •

I ask around. I share my diagnosis with a couple of writers, who understand the language on a deep level and another doctor who's got a pretty good grasp of how to deliver news. I also give it to someone clerking for a federal judge and who's known for extremely careful and balanced thinking. You might say that I did my own PET scan of the PET scan.
The results are distressingly human: the damn thing is on the ropes. Maybe it's dead, maybe it's just taking a long estival nap. Maybe the radiation killed it, maybe it just pissed it off and it's plotting revenge. Maybe it will kill you soon, maybe it will kill you later, maybe something else will get you first. Look up 'reprieve'.
And it turns out that this is just the answer I want. It's very good news indeed. Yes, the cancer is, for the moment, less of a threat and yes, every day I'm alive is a gift. I have some time left and my best shot is to be ravingly alive for every second of it- to do the things I do well and enjoy the things I do badly, to write and eat and drink and love and travel.
Ah, what's that you say? You got that diagnosis too? Yup, we all did.

Breaking Bad News/Building Good News

The bad news came in an email. I got it along with my morning coffee. The publisher who rediscovered The Bachelor's Cat and was going to publish a 'special' Christmas edition has changed its mind. It didn't sell that well first time around and so none of the chains wanted to order in big quantities and so they're terribly sorry, but.
How did I feel? Sad. That little book was a sweet reminder of Spike the cat and family life and for a while there, I had those feelings back again.

•   •   •

The good news came in mahogony. My nine-year old assistant, Master Dashiell Townsend Ward and I wired this together.

Heavy PETTING

The Sands of Time, he said,
Are just the grindings off the Rock of Ages,
Which is itself, in turn, a fragment of 
The broken World of Hurt.


Without the Hurt, it's obvious,
He continued
That we'd be out of Time 
And instead it's clear 
That we have Time to spare,


Yes, she said,
And there's Time to eat here, 
And then there's Time to Go.




Today I went in for another PET scan. They're scanning for tumors, which is sort of like bobbing for apples or trolling for walleyes. The similarity lies in the uncertainty, the wetting your face or tossing your bait and hoping for an apple or a fish. 
In this case, we're trying to reduce the uncertainty: Is there a cancerous tumor there or not? Do we have some little malignancy that's set up shop in the thoroughly irradiated and chemically cauterized neighborhood of my throat and planning to go Wal-Mart on me at any moment? Or are we done for a while? 
To get  ready for a PET scan, I fasted for four hours-no big deal for a guy who didn't eat for weeks. Then Sheldon, witty and kind, poked around in my arm for a while until he finds a vein that's willing to accept some radioactive glucose solution.  Then I went to a quiet room to rest for a while while the glucose surged around looking for needy tissue. As it happens, cancer is especially demanding of glucose and in a fasting body, it sucks it up faster than the regular muscle tissue. The scan is just a way to eavesdrop on your metabolism (origliare il metabolismo)* and see if there's any cells who are just shouting up a storm.
The modern version of the scan has you laying on a table which slides silently  through a big, donut like machine. The scan takes about 20 minutes and it's hard not to imagine it as a kind of birth, a sort of passage or at least a very, very tame ride at a kiddy amusement park. 
Today's machine was older, and you slide into an enclosure like a tube sock. I'll give you a dollar if you can do it without thinking the word 'coffin'.  I meditated furiously (yes, that's possible). The technician asked me if I like smooth jazz. No? How about Classics in Springtime? Sure. (When you go for your scan, ask to reserve the 'open PET scanner' and bring your own CD.)
And then it's over and it's almost noon and I'm talking to the gorgeous redhead at the coffee bar who tells me that she'd rather be selling red wine and I'm hungry. I don't think to ask when I'll get the results.
For one thing, Fox Chase has its own rhythm. For another, I'm almost bored with my health, I'd rather think about the boat i'm building or my book bonanza (three books so far this year!) or my next batch of beer or my kid or her boyfriend or anything but me and the reaper.




Truth is: I'm ambivalent about the results. My fantasy is that they say "you're cancer-free", and I wonder if I'll burnish up or blot out this bright sense of living, of squeezing each day and consciously throwing the rind out the window at night.
Stay tuned.


•   •   •

Today i also saw a pipevine swallowtail butterfly-the first one i've ever seen alive and fluttering. I'll call it a draw.

Yesterday was father's day-an american institution that sounds japanese- I had dinner with my daughter who has become-who'd a thunk it?-a person. 24 years old, poised, thoughtful, humane. a better piece of work than i was at that age, probably better than i am now. i think she is pretty too, but fathereyes are astigmatic that way. Proud? Humbled, actually. In any case, I wanted to applaud. dinner was good too.

*guess who's reading Dante again?

Unrequited Love

When I was a young man, I was in the Merchant Marine. That means that I was one of the crew who sailed American merchant ships all over the world. I sailed on super-fast cruise ships and super-slow freighters. Mostly, I picked ships based on where they were going and I got some curiosities satisfied.

There was one ship, however, that I lusted to be on. I would not have cared if it went out in the ocean, made a big circle and came home. I very much wanted to ride The Big U.

The Big U was the SS United States. It was the fastest thing afloat and its four screws took it from New York to Southhampton (the one in the UK) in three days. Its top speed was gossiped about and rumored to be a government secret. It was said around the union hall that it could be converted overnight into a troop carrier that could move 10,000 soldiers and their equipment 10,000 miles. The four giant shafts that came out of its steam turbine and turned the screws were so massive that they would deform under their own weight if they were ever allowed to stop rotating. I don't remember the rest of the stories, but it doesn't matter-the ship was a legend and if you sailed on it, you were part of something mythic, something worthy of New York. Sometimes, from the West Side Highway, I'd see her tied up, slow plumes out of her stacks and a crew of attendants swarming around the dock, but every time a berth on the Big U came up in the union hall, I would throw in my card, and seniority being what seniority was, I never got the job.

It's years later and there are a lot of ships that sailed without me, but this particular one-maybe because the process was so impersonal-has a special smoke of nostalgia about it. These days the Big U is tied up on Philadelphia's waterfront, across from the Swedish furniture store, rusting quietly in a city with a sense of history. She will never sail again of course, and her chances of becoming a hospitality industry asset are oxidizing away everyday. Eventually, she'll be scrapped or scuttled. Whenever I go down to visit her now, I feel like we found the same home port, and there's some satisfaction in that.   

Tripping, part 2

Sometime last winter, I was recovering from treatment and still unsure if treatment had worked. I was at that two-roads-diverged-in-a-yellow-cancer-clinic moment: uncertain if this cancer was going to get me, but definitely feeling just a little bit better, a tiny bit stronger and more willing to do things in the world. The first things I did, now that I look back on them, were things that I fancy I'm good at. I wrote poetry, poked out a little fiction. I started to cook again and I even gave a beer tasting at a time when I didn't even have two tastebuds to rub together.
Back from my trip to the woods and friendship, I feel more than a little stronger. I feel like it's time to do something I'm not very good at and have a few laughs as I stumble through it. One of the areas where I'm not quite adequately competent is building stuff. I didn't grow up around mechanics and handy people. My dad and I took each other apart from time to time, we never disassembled a car engine. Somehow, making and building things just never came up in our two-bedroom apartment in Brooklyn.
But one day in my early thirties, I bought a house. It was, like me, a fixer-upper with real potential. I didn't have much money, so I applied my absolute lack of knowledge and skill to everything that needed doing. I'd love to tell you that hard work and determination triumphed, but in fact the renovation was a series of small flops, big screwups and misplaced ambition punctuated by occasional successes.
I learned stuff. I never got good at any of it, but I became tolerably 'handy'. The odd thing is that I also started to like building things. I read the Garrett-Wade wish-book when my friends were reading the  Victoria's Secret catalog. I bought tools, I coveted table saws and routers. I never got good at it, and I never stopped.
My family, to their great credit, indulged me and occasionally, I overachieved and felt really good about it.

So. With that intermittent-reinforcement system in place, I decided it was time to build another kayak-a smaller, lighter boat that I can manhandle on to a car roof. The kit's been sitting in J's garage and today I sliced it open and got to work.

A pile of  plywood.

What you see are mostly slabs of 4mm plywood that get glued together to make a boat. The first step is to join matching pieces to make bottom-, side- and sheer-panels. Then you join the two bottom-panels to each other, attach the side and sheer panels, throw on a deck*, cover everything in fiberglass and you got a boat.

Today's work was making the panels by glueing their halves together. To keep up a tradition that I started with my last kayak, I mixed way too much epoxy for the job. That's a total loss because the stuff sets up like a rock about thirty minutes after it's made. Then I forgot to add a stiffening ingredient to the wet epoxy before applying it. Two good inaugural errors.

Right now the panels are curing overnight, stacked on top of each other and insulated from each other's magic adhesive by sheets of plastic.

How do I feel? Just like old times.

*notice the casual 'throw on' as if this was all in a day's work for a handy, dandy fella like myself.

Tripping

Cancer likes to stay close to home. You can imagine all the reasons: low energy, incredibly fussy diet, outbursts of sentimental attachment to dogs and cats and things and people at home. So one of the signs of a remission, of the time in between scans, is the desire to take a little trip.

I wanted to see my friend Peter and he lives four hours away in place called State College, PA or Happy Valley or Nittany Hill or something. I wanted to see him for a lot of reasons, but the most shallow one is that we laugh a lot together. The most elevated one is that we like a lot of the same things and if I decide I want to stand by the side of a lake watching little bass cruise the shallows, there's a good chance that he knows just the spot.

Sometimes driving is fun, but humping your car down the road is a pretty low-skill, high-alertness job-the sort of thing that tires a person out without the redeeming sense of accomplishing something worthwhile. So I came here by bus. It's about a five hour run with a change in Harrisburg, but the view is seductive and since I'm not driving, I get to enjoy it. I drift between my Inspector Montalbano mystery, the beautiful country side and the bus-seat version of napping. For the last two hours, my bus has wi-fi, it drives up along the Susquehanna, then the Juniata and everything is green and alive.

We've been out to the acre that his restaurant keeps in produce, we've had chicken and beer in the back yard with the Chipping Sparrows, the Blue Jay and the Cardinals. We've been to the achingly gorgeous front lawn at the Clearwater Conservancy with its butterfat milkweeds and to the luxurious arboretum at Penn State. Peter is one of the few people who understands my obsession with food markets and, even though he may not share it, he's happy to indulge me with a stroll around Wegman's and an unhurried quarter-hour in their beer department.

Today we kayaked up in Black Moshannon. It's a bog whose black, reflective water is dotted with water lilies and overseen by damselflies. About a mile and a half from our put-in, just past the spot where the Canada Geese and their gooslings were working the weeds, we both stopped paddling. We bobbed there for a half-hour or so in the broad view of the lillies and the hills and the black-to-blue sky.

We watched the little boy in his mud boots bring his treasures to his blond mommy, we scoot towards land when it looks like thunderclouds.

Then Peter says, in a voice that he's obviously borrowed from some indoor person: “Don't you ever get bored?” It pierces the perfect contentment of the moment in the best way, turns the page without smearing the ink. We laugh, dip paddles and a half hour later, we're eating sushi and I'm ready for an afternoon nap.

•   •   •

It's my first kayaking since last fall when I launched my wooden kayak and the next week, gave myself up to the treatment. Today, I didn't know if I'd be strong enough, if I could still paddle. It was fine, just fine and I promise myself to be back on the water again in a few days.

And Don't Thirst Either

J reminds me that I was admitted to the hospital twice during my treatment. Both times I was dehydrated. Since this was the dead of winter, I guess you could say I was freeze-dried. The first time I woke up in the middle of the day, walked to the bathroom and passed out on the way. When I came to, I called the Gilmore and he drove me to Fox Chase. When J arrived, I asked her if this was the part where I die. She said 'no', but it seemed like a perfectly reasonable question at the time. The second time, I tried to get out of bed and I folded like over-cooked pasta. When J drove me up to the emergency room,  I collapsed getting out of the car. Fortunately, the young man who picked me up didn't have to strain much since I weighed about as much as a Standard Poodle.
You can ask your Wikidoctor about dehydration, but it's really pretty easy to understand: your body does its work in its own water. Let the water level get too low and instead of work you get job actions, work stoppages and industrial protests. Ever had a hangover? Acute dehydration is like that but worse and without the preceding exaltation, laughing, shameless flirting and tearful recitations of Dylan Thomas.

I'm going to save you a lot of research here. The best cure for dehydration is to drink lots of water. It's almost impossible to overdo it-just drink. Then how do we cancer buffs let ourselves get dehydrated if the cure is so simple? Those of us over in the head-and-neck division often find it hard, even painful, to swallow. So we slow our drinking down. If you're over 50, your thirst response is probably impaired so you don't drink reflexively any more. And you're nauseated- which makes the thought of swallowing anything unthinkable.

There's a spiral here, a malicious, downward, dizzying slide. The drier you get, the less you want to drink-and the more brittle and unresponsive you become. So you desiccate some more and feel worse and become less capable and even drier.

So what to do? Conspire against yourself on your own behalf. You're not thirsty so attach drinking to things you'd do anyway. Make it a point of religion to drink a glass of water or milk or juice every time you wake up. Pay attention to your dry mouth and treat it with sips of water from the bottle that's now your constant companion. If you speak in public, have a bottle of water with you and use it as a punctuation mark. Consider broth. Praise yourself and drink every time you get up to piss and learn to love pale urine and be alarmed at the dark variety.

If you're reading this because you love someone who's whirling around in the cancersphere, your new way of saying 'I love you' is to offer, then insist on having a drink together.

Finally, if you have an installed catheter ask your doctor about taking fluids intravenously. If you're in reasonable condition, you can take a litre of saline in about 30 minutes. You can learn to hook yourself up, get hydrated and disconnect in the course of about two innings of a typical Phillies' game-well, maybe three innings considering the 2011 pitching staff, but you get the idea.
Whatever you do, it's your job to not dry out. Life is wet work. Stay alive, stay damp.

The Examined Head or Dr. Galloway and the Snot Scope

Did you ever wonder how they check out a cancer on the back of your tongue?
Yesterday, I was back at Fox Chase seeing Tom Galloway. He's the radiation specialist. He's also the doctor who takes time to answer my questions. Of course, the thing he wants to know the most is if all that radiation killed the cancer or not. I've had two biopsies since November, neither of them were conclusive. We'll also be repeating the PET scan in a couple of weeks, the last one was also-you guessed it- inconclusive.
So Dr. Galloway wants to take a look. Most people gag when they're touched around the back of the tongue, so any peeking has to be sort of indirect. Here's what they do: they snake a long rubber hose up through your nostril and around and down your throat. It's an evil-looking thing and we may well call it the Snot Scope. There's a light and a lens on the end of the hose and it's connected to an eyepiece in the examiner's hand.
I wouldn't call it painful, but there's a definite creepy sense of invasion. Every muscle in your body seems to be tensed and ready to get you and your poor head out of that chair and away from that thing. 'Creepy' is an odd, compound feeling. As near as I can tell, creepy is made up of fear and disgust. Think of a miniature version of a colonoscopy-without the redeeming anaesthetic before and fresh-squeezed orange juice immediately after. Think of something that might properly be done to a suspected terrorist who's swallowed his cell phone or a dog who ate your engagement ring.
 I can tell you that one doesn't get used to the Snot Scope-at least not this one. I'm surprised they don't need a surgeon to excise my back from the examining chair when the procedure is over. However, I was reminded of something useful. Galloway had a resident insert the scope and peer around before the eyepiece was handed over to him. This increased my up-your-nose-with-a-rubber-hose time by about one hundred twenty per cent. and my discomfort by about double that.
What I want to pass on is this useful realization: even when there are sound educational motives and worthy humane values involved, it's okay to tell the doctor that you'd rather not be examined by the trainees.  (If they put that thing in you and then went out for beer and kielbasa, you'd object wouldn't you?) "Please, good sir or madame, just creep me out yourself and do it as efficiently as possible."

I don't want to suggest that you should refuse every student examination. We do have some obligation to our fellow creatures to help train the docs. I'm saying that everybody should feel comfortable saying when they're uncomfortable and that we're all entitled to opt out of one instance of being cadavers before our real cadaverosity.