Bolted Down-Radiation Day #6

It turns out that being bolted to the table isn't much worse than being screwed on the desk or nailed on the carpet. It only lasts a few minutes and there's not much pain involved. So by radiation day #5, I'm skipping the pill. My friend JR Lankford gives me some quick meditation advice and I slouch down into meshmask land and feel my breath going in and out. (I'm a little embarrassed that my own Buddha nature didn't get me to this, but that's why they invented drugs.) In a few minutes it's over and as long as I don't feel choked by the little tumor bump on the back of my tongue, it's pretty easy.
I know it's silly to feel triumphant about something like being able to skip a tranquilizer, so I'll just feel lucky.

Hospitalized

Yesterday as i was getting ready to head out for radiation day #3,Friday's dizziness came back and I blacked out. 

Not the two and a half bottle of wine/danced all night kind of blackout, more like a little swirly gray down that leaves you staring up at the bathroom ceiling with a certain pale sense that something's horribly wrong and you probably have a checkerboard pattern on your cheek.

So I checked into the hospital at Fox Chase where I'm getting my treatment.  It turns out that I was dehydrated. The chemo-chemical from chemo#1 was drying me out so much that body systems were shutting down. I got to the point where i wasn't thirsty-or hungry-and a little nauseated and so I drank less water and didn't eat much and. . .

So anyway, the deal is that the doctors try to kill the cancer and the stuff they use tries to kill you. The stuff is not smart enough to tell the difference between cancer and you*, so it kills you a little too. So then the docs give you stuff to ameliorate the effect of the cancer-killing stuff. This stuff is only slightly smarter than the first bunch so while it helps a bit, it has some drawbacks of its own which need correction. And then there's another drug and so on.

Yesterday's drying out was just one body system overwhelmed. In the time it takes them to get the numbers right for all the different systems, you get your ass smacked around a little. Yesterday and today I was in Fox Chase hookedup non-stop to IV saline solution.  (I'm told that .9% salt water is the body's drink of choice-although you coulda fooled me.) Six or seven litres later, I'm human again, I've got a new medicine schedule and I'm thinking of getting that bathroom floor upholstered.

What's dehydration like? I can't really tell you, but I can guess. I can't give much of a report because one of its effects is that your brain is flooded with Vitamin Stupid. I couldn't find things that were in their usual spots, I was barely aware of anything going on around me. Did I already take that pill? Should I take another? Meditating was easy, thinking was hard. Right now, I don't remember much of what happened. I suspect that if you died from dehydration, you might not notice that you left. 

Back to Fox Chase tomorrow for radiodays #5.

and how are you?

•of course, it's always possible that there is no difference, but that line of thinking leads to a heavy sense of adolescent pessimism and some very strange sci-fi movies

Crash! September 24, 2pm

My friend Hugh Gilmore drives me on Thursday to my first radiation session. I've already had Cheemo #1 and while he's driving, I'm extrapolating. 'if I feel this much better on day one, it's propably going to be all right." Hugh and I make a date for some serious porch-sitting and world-repairing tomorrow, Friday.
Nice way to start the weekend, eh? On the Road to Re, Cancer quivering with fear as my little friends the electrons start swatting them around.  Yeah, maybe we'll even sing a little bit.

That Friday afternoon, a few hours after the second radiation treatment, the brick wall came crashing down. I'm riding home with Charlie, my co-op driver. Charlie's been down the cancer trail himself and he's mildly, quietly positive. The third day's the worst, he says. . It wasn't fun but he beat it. I've got a little positive glow going myself. The pain has lessened-no more pencils stabbing in the ear canal, no tender boils in my throat.
Then, just about the time the car pulls to the curb in front of Joan's house, I'm sure that there's no way I can get out of the car, lift myself to vertical and walk. I'm dizzy, sort of like being drunk but without the tiniest bit of fun. I did not yell 'yahoo' as i spiraled to the ground, nor did i wish anybody a Happy New Year. I'm nauseated too. There's a golf ball size chunk of something in my throat that's trying to kick its way out. My fingers seem to work, but nothing else does. I try to explain my predicament, but nothing comes out.
I don't remember how I got inside-the expression 'doubled over' comes to mind. Images from Dante pop up: Paolo and Francesca puff by, or the souls of the damned eager to hit the ferry to Staten Island.
I notice that most of the anti-nausea meds are sedatives of one sort or another. That seems like a good idea, and I sleep.
I think Hugh called sometime in there to check up on me, but I can't remember what I said and I'm hoping he doesn't.
It's now about a full day later. I'm going to see if I can stand up.

The Odds Go Up

There are two kinds of tumors that form where mine is. One is the squamous or scaly-cell tumor. It's caused mostly by smoking and drinking and it's about 50% curable. The other kind is caused by Human Papilloma Virus and it's about 80% curable. There have been chances for a month to find out which cause was behind my effect, but Dr. Murphy and his Law delayed the news a bit.

No matter now. It's an HPV tumor-here's a picture of the author:

Charming Fellow. I'll say more about HPV later, but one intriguing note is that this is about the only cancer-causing organism against which there is a vaccine. Yup. A vaccine. They're only giving it to kids these days-and mostly to girls, but a lot of cancers-including mine-could have been prevented with the shot.
Maybe some day we'll chat about how some health officials and conservative legislators object to giving the vaccine for moral reasons. (moral reasons!) but not now. 80%  feels like quite an improvement and I think I'll enjoy that feeling.

Send in the Cheems-September 21,2010

Sailors rejoice! The Chemo-
Port goes on the left.

Back in the bad old days, everytime a patient got chemo-therapy, they opened up

a fresh vein. Between the finite number of veins and the apparently infinite num-

ber of occasions for opening them, a crisis emerged. Not only were they running out of veins, but some of the repeat offenders were inclined to infection. 

So the soulution is something like a gas cap semi-permanently inserted in your blood supply. There's a cap and a valve that leads to a tube into a vein. when ever they need to pump something in or take a sample out, they just pop through the thin skin that now covers the valve and add or subtract as they wish.

Getting one of these installed is painless and they tell me it takes about 15 minutes. The procedure is done by a pro called an Interventional Radiologist. I take this to mean that he's a surgeon with instrument flight rules training or a radiologist who just hated all the fun he was missing. 

____

You wait for your port implacement in a state called NPO-nil per os-nuttin' in the mouth. They say it has something to do with keeping you gut free, but any anthropologist would recognize it as part of the separation phase of an intitiation ritual. I understand that at Sloan-Kettering, they make you sit in a smoky sweat lodge for two hours and at Johns Hopkins they have something called "Beat them to starboard, then stick in the port." So I guess it could be worse. 

Here at Fox Chase, you have about an hour to get a mushy sandwich past your jaws and then you go to the chemo lounge. The lounge is a set of screenable areas with a big easy chair for the guest of honor

(at last your own BarcaLounger!) a guest chair, a TV, a reading light and a pump on a stand.

They hang some bags on the pump stand, connect them to a tube coming out your brand-new port, wish you luck and walk away while they dripdripdrip you. 2 1/2 litres of saline, plus the drug itself. you read, you doze, you get up eleven times to pee. (hydration is the big word here.) you're slightly, pleasantly out of it

My friend Laura drove me there in the morning and picked me afterwards. there's no way you could drive safely. She also helped me pop a few wheelies in the wheel chair going out the door.

The amazing thing is that the pain that I've been living with was reduced by 90% with no pain meds involved. they tell me that's typical. side effects? well, i slept 12 hours last night (listened to the 7th and 8th inning phils beating the braves and then nodded out)and may go sleep some more now. 

Had a little twinge of nausea. all-in-all i'd say it's  a pretty good trade-off. Now if only this stuff cured cancer. . . .

Dis-Ease Before Treatment

Before Treatment: 162 pounds, 25 pushups,
1 dog.

So far, 'having cancer' has been mostly about dealing with bad news. This week, it's turned into palpable dis-ease. Every day, I have a little more pain and I get a bit weaker. I lose a little weight and my throat closes a bit more. I go to the gym and I leave because I'm tired, not because I'm finished. There are other symptoms too. I would like to start treatment now.
Tuesday, they install a chemotherapy port-a little vein valve that lets the chemo in and the blood out. Then maybe later this week. . .

The Passing of a Pronoun or What Happened to ‘My’?

Someplace early in the cancer countdown, the possessive pronoun, first-person singular starts to sound sort of silly. ‘My’? My what? What could possibly still be mine? Or maybe: how weird is it to maintain that you can own anything when the you who does the owning might disappear at any minute? Can a puff of smoke take out a mortgage? Do waves have driver's licenses? When the cop tries to arrest a cloud, does he have to read it its rights? 
It becomes suddenly very easy to look out and see things you own dancing on their merry way without you. My dog, my car, my books, my house.

Maybe it’s still okay to talk about my books (the ones I wrote), my friend, my students, my kid, my karma. Maybe. Chances are that the link with the dogs-all of them-is eternal, and Spike the cat is mine forever and vice-versa. (I could call them all now and maybe we'll huddle together under a blanket and refuse to come out.)
Even allowing for these exceptions, owning something starts to sound-not impossible, but at least deluded and at worst obscene. And once the principle of the thing becomes evident, the whole foundation of ‘my’ starts to look pretty shaky.
I guess that if ‘my’ starts to disappear, ‘me’ either disappears with it or it’s all that’s left. When I think about that for a bit, I find myself starting to laugh, sort of like the crow who flies just out of the hunter’s range and caws at him from the telephone wire. Whatever goes on, nothing can happen to 'me' and we're all fine, purring and snorting and barking together in a nice warm bed.

Is There a Drug for That?

There’s a conversation the day before the radiation simulation. Mine was with Dr. Galloway, a young, pleasant man with a gentle way about him. I tell him that I’m in absolute horror of what he has in mind for me and I want to know if he has any drugs for the Mortal-Fear of Being-Confined Syndrome.
I don’t want you to think that drugs were my first resort. Oh no. First I tried mindfulness, breathing exercises to see if I could substitute reality for the fantasies that ran screaming around inside my head. Not a chance, thinking about the mask beat paying attention to the breath every time. Then I gave myself a guided image. I imagined Maitreya dancing backwards thru the future to the Pure Land where he does a soft-shoe number with the Amida to the tune of Tea for Two. About the time I got to ‘me for you and you-oo-oo for me’ I saw them both imprisoned in plastic mesh and crushed with little Buddha oozes coming out between the threads. Not good, not medicinal, heart rate hitting about 120.
So my question to Dr. Galloway is simple, heart-felt and almost completely without shame:
Got any drugs for that?
He does. In fact, he whirls immediately in his swivel stool to fetch his prescription pad, almost as if he were waiting for me to ask. The little pill is Xanax, .5 mg. Lots of people have problems with the mask, he assures me. He orders me one for every day of treatment-a nice touch since it gives me a gauge with which to watch the Roentgens go by. Out of pills? Well then, you must be done with radiation.
I took one pill before J and I left the house. An hour later, in the waiting area, I’m hearing my heart beat and wondering if I can dig a tunnel right the hell out of here. J assures me that half a milligram ain’t much so I took another point fiver -the one that I brought along just in case. I may have messed the metric up a little here, at two tabs per bolting down, I’ll go through this bottle at the half-way point. I’m sick about mucking up the meter-but I’ll bet there’s a drug for that too.

How would you feel?

Freaking Out

The nice doctor is explaining how radiation therapy works: A gun-beam of radiation is aimed at the tumor. The radiation kills the cancer cells by messing with their DNA. Normal cells that get shot by accident (Innocent Bystander Cells) are pretty good at replacing their DNA. The cancer cells, being more like undifferentiated stem cells and all geared up for growing, aren’t very good at making DNA and so they die. Yahoo.
Of course there’s a problem here for the gun-totin’ cancer doc. The tumor's on the inside and except for a few cases where they use implantable pellets, the radiation comes from the outside. How do you aim? The current answer is that you hold someone’s head completely still and take a CT scan picture (the CT shows the tumor and normal cells differently). The picture’s in 3D and it acts like a map when the CT scanner passes it off to an x-ray machine which shoots where the map told it to.
Here’s the trick: in order for the map to help the x-ray beam, the person’s head has to be in the same place every time. Otherwise the radiologist is just a touch-typist who doesn’t know which keys to start from. He's shooting fish in a barrel in the dark. And so on. So to make sure the beam’s hitting what the  scan is saying, your head has to be in exactly the same place every time. 
Here’s how they do that. They make a mask of each person’s head. The mask has to be very tightly-fitted to your face. Then they  frame the mask with a flange and bolt it, with you inside it, down to the CAT scan table. Then they take your picture, move you and the mask over to the xray table, bolt you down again and fire away. From then on, every time you come for radiation therapy, you're in register and that ol' tumor is right in their sites.

I guess the resemblance to the lethal injection table is coincidental.

The mask is the mesh contraption with the blue flange. Look at it. Can you feel your head held down to the table and the mesh tight against your skin? 

It's at about this time in the explanation that I started to think: you’re going to bolt me down with my head in a what? As soon as the vision of that confinement started to form, I could feel my heart start to race. Fear, no Panic-sheer animal get-me-the-hell-outta-here panic took over. I find myself wondering what death from this cancer would be like. Gotta be better than the mask. Would I at least be in the open air?
I'm giving thinking too much credit here. There's no thought involved at all. There's just a very short loop that goes from the image of being bolted (bolted!) down by my head to wild, pulse throbbing, muscle-twitching, sweat-panic. All flight, no fight. This ain't happening. Not to this citizen.
Later, minutes later, the thinking sets in. I remember seeing death masks of this person or that-folks who were important enough to be memorialized and who had no say in the matter anyway. 'Saints in white plaster', I sing to myself, ripping off the Moody Blues tune, something about 'reaching the end'. My kid, my books-in-progress, the sweetness of Autumn, the beauty of J., Garth Stein novels, another baseball season, paddling the Pine Barrens. Shit. The ticket to life has to be bought with this? OK, I'll take it like a man. I ask the doctor the big, manly question, say the thing that would make my daughter proud.

The Good Doctor-Part 1

An old girlfriend hears that I’m sick and gives a call.  We dated so long ago that there is mostly nostalgia in our conversations-as if we had once studied with the same irascible scholar and get to chuckle now at his failures as well as our own.
She says: “What I want to know is: do you have a really good doctor?”
This shuts me up better than the sore throat. How the hell do I know? For me to be able to tell that a doctor was good, I’d at least have to know more about the topic at hand than the doctor herself. Ideally, I should know more and have a deeper understanding of the context too.
And I don’t. I completely forgot to go to medical school-I don’t even watch hospital shows on TV. In fact, I’m so puzzled by my complete naivete in the face of such an important question that I’m starting to wonder about what I do know about doctors. How do any of us know if any of them are any good?
One thing I could do is ask other doctors, but there’s a problem. It’s the same as mine, but worse. How do they know? And if they knew, would they tell? Did you ever hear a doctor say something negative about another doctor? Me neither.
One consolation: Medical school and licensing procedures probably weed out most of the dingbats.  But you know the old joke: what do they call the guy who came in last in her class in the worst medical school in the country? You know what they call her: "Doctor".

Here’s all I’ve figured out so far: If you ask a doctor a question, you should get a complete, understandable answer. Complete means that all the nuances, probabilities and uncertainties of the situation ought to be there. If the answer isn’t complete enough, ask the next question: go deeper ‘til you’re in over your own head. Understandable means that you’d feel comfortable repeating it to someone else.
Now I place a lot of faith in this technique-probably because it’s the only one I’ve got. Well, there’s one other: you want a doctor who gives a shit. That’s partly because it’s nicer to be around someone like that and partly because you can assume that his caring will spur him on to know more and do his best.
So I’ve knitted these two lame little threads into my only line for hooking a good doctor: My doctor-Brad Fenton-is a good doctor, a healer and a smart guy. I ask him “Brad, if it were you, who would you go to?”
I realize that this is pretty pathetic: what I really want to know is: out of all the patients that Dr. X has seen, how many got better and how many croaked? How does that compare with Dr. Y? My doctor doesn't really know the answer and my old girlfriend-like me-can't even begin to guess.
So while we’re at it, let me ask you: yes, you. Do you have a really good doctor? How do you know? And if you really know, would you mind coming and checking these guys out for me?

It's Really about Death and Time

What's it worth to you to live another year? How many arrows will you put up with? How often are you willing to puke? What's a good day, no, what's a good enough day? Is there anything in your life that you care about so much that you'll let the archer shoot every day rather than take Death's hand away and let him see you?
So far, there is something for me. There's my kid, there's poetry and story-telling. There's the memory of teaching, eating, drinking, dancing and being silly. There's the flight to Milan and the Ferry to Staten Island. There's a love, there are friends. There's curiosity, vanity and even still, a bit of lust, a love of laughing.
But I'm pretty thin and the price of time gets higher with each tick. Stay tuned.

Subtractions

I read that a usual consequence of radiation to the head is a loss or a distortion of the sense of taste. Food tastes too salty, too sour, like metal or not at all. You probably won’t be able to chew much anyway, so ‘food’ in this context means a puree of something or other. You don’t eat anymore, you feed. One of my doctors said something about  a surgically-inserted feeding tube.
So there. In a week or two one of the main parts of my life will disappear. Food, making it, enjoying it, sharing it, telling stories about it, all gone. Food (and drink too) have been my music, my art, my dance, my favorite way to connect with people.
This hasn’t happened yet so all I can do is wonder: What will I do with the passion? Is it transferable like a bank account or is it rooted in place like a tree? There’s also a darker worry:
Who will I be when the food and wine are gone?
My bet right now is that the object of passion has very little to do with it. You love what you love because you love-and then you had to pick something out to unload the love on. Not that we don’t have predelictions-there’s not much chance I’m going to become a fan of stock-car racing or cow-tipping.  And I find myself thinking a lot about Fairmount Park and Carpenter’s Woods these days, maybe about adding them to the list of things that matter to me. They’re beautiful this time of year, false fall, crickets, asters, day-flowers and poke-weed all over. Those woods could use a friend or two, let’s see what I can do.  I also hear that they’re radiation-proof.

L Ho Raps on the Question of Identity in the Face of Loss

So maybe no taste, no smell. Who will I be without them?
I taught culinary arts for 15 years. I write about the taste of wine
and beer. Will there be any me left after the taste is gone?
For guidance, I turned to L Ho, my favorite rap artist.

––––

Knowin' it by L Ho

i know exactly which herb puts the the squeal in the meal
and the smack in the crack between the sweet and the meat.
my friend dave can look at the flies in the skies
and then skate the bait that makes the trout shout out.
my sweetheart joan can quiet the riot
in the lids of the kids who have cries in their eyes.
dear peter reed knew the domes in the homes
that put the calms in the palms and smiles in the isles.
my cousin ell knows how to sing like the bell
that shorts out the wire that kindles the choir and sets them on fire.

the bachelor of seance, the master of art!
what grace, what strain, man we’re clever, we’re smart!
and those of us living, like those of us dead
surrender sweet knowing when we stumble ahead.
you thought your knowledge was you, but you’re really much more
the ideas that you thought were the stuff of your core
were just on the edge like the hair on the hay
not near to the stalk that you’ll carry away.

your clever, unique irreplaceable song
the one that you sang as you frolicked along
will turn into silence and all that you knew
will vanish and all you’ll be left with is you.

My Favorite Gown

Fox Chase Cancer Center is no ordinary hospital. If you've been in a hospital lately, there's a good chance that you ended up thinking of yourself as, oh a piece of meat or an experimental subject or a case number or even lucky to have lived through it. The Fox Chase people, on the other hand, seem (so far) determined to treat patients like people.

It's partly in the way they greet you, partly the pleasant sense of self-disclosure: my anaesthesiologist has written a novel, my nurse is married to a pharmacist, the surgery resident loves Marques de Caceres and so on. What really gets the message across though, is the gown. Ever shivered through the time outside the operating room wondering if they were planning on freezing you to stanch the bleeding? At Fox Chase, they have a gown with a paper bag inside it. It's called an Air Bear or some such. The bag has openings that look like the ones on vacuum cleaner bags and they attach to a hose at the side of your bed. The hose brings heated or cooled air and puffs up the inner bag. It's the cozy patient process. Just to make it almost too good, the thing ties in the front! Who ever would have thought of such a thing? How can a person be cured without their bare butt being exposed to dozens of complete strangers? It's a lovely, cozy gown and  what's even better is that I think I have the perfect earrings to go with it.

In fact, there's only one question that troubles me about the Fox Chase gown:


Is it too busy for daytime?

How I found out-August 13th

A bit down by the stern, but who wouldn't be?

The business with the allergies and aches and pains in my head wasn't getting any better and then I woke up around 2am on august 7th yawking up bloody gobs from my throat. It turns out that Temple Hospital had an ENT on call at the ER and Jefferson Medical Center didn't so we spent the night on North Broad Street. CAT scans, chest xray, blood tests, nothing conclusive, but the bleeding stopped and I got an appointment for the next friday with a doctor in ENT (although they disdain the term E-N-T here, it's Otolaryngology, thank you).
So Friday the 13th, Joan and I go for this appointment. We'll call her Dr. Rice-a-roni. She checks out pretty good on the web, Johnny Hopkins, lots of publications. She sildes a tube down my nose-she's the fourth or fifth doc to do this-and says. "It's cancer."
Now if you ever want to stop the chit chat in a room and get everyone's attention, you can't do better than that. Could it be an infection? nope, cancer. lymphatic. . .uh uh. cancer. oh. her tone wasn't exactly the chirpy one where they tell you 'it's a girl'!, but it wasn't very gentle either-she rolled her eyes conspicuously at joan's suggestion that we consult the infectious disease guy. there may have been a tiny bit of 'gotcha'. Anyway, shitty way to hear shitty news. it's possible that you're never going to warm up to the person who tells you that you have cancer, but I don't think anyone gets well with this lady as their doc.
So the biopsy was yesterday and the preliminary look suggested yes cancer and maybe even a lot of it. squamous cell head and neck. only smokers are so honored, but drinking helps a bit too. (Later, we find out that HPV can also cause it. Joan, of course, works on a vaccine for HPV. Our Lady of the Sick Coincidence, pray for us.)
• •
So now we move on to discovering how many, how big and how widespread. (Radiation and chemo are the usual treatment, loss of speech and the inability to swallow are the usual side effects) Next thing is the PET scan. (I'll promise no puns if you will too.) It's part of a process called staging which defines how bad it is, what your chances are and what the doctors can do about it. That's the medical problem. The life issue is that I'm not sure what the timetable is here. Do I have a summer of sailing to look forward to or should I not even buy green bananas? Bulletins as they break. anyway, I'm composing a bucket list and i'm taking suggestions. There's that sailplane ride with Peter Nyheim over the autumn hills of Central PA. I hear there's a butterfly house in British Columbia and a steak house in Tampa. I want to see if I can afford to leave enough money to keep one little corner of Fairmount Park wildlife friendly and clear of invasives. I want to be a little more Buddhist, maybe even a touch yogic. I want to taste a few things, I think I might want to record a poem or two if I have a voice left to do it with. Definitely the porn novel, probably the missing kid story too. i'd like to write one song. I'm surprised that there's not a lot of travel on my list so far-just being near water.
Of course, as we get down to the end, it may turn out that what I really want is two exotic dancers, a room filled with tastykakes, pictures of all my dogs and cats, a waylon jennings album and a set of headphones. It's not very likely, but stay tuned.

Floating, Sept 5-7

Here's what I know: I know I have a cancerous tumor growing in my throat. I know that it hurts. I know that I have a chance of surviving it after a round of radiation treatments and chemo-therapy, but no one seems to know just what that chance is. I know we're all gonna die and -even though I expected my death to happen to some futurized creature who looked like me but wasn't-and that death happens in a very real, touchable present. Now, for instance.
I also know that my kayak, November, is ready to go in the water. Building her was a bit over my head and any real craftsman would probably snort at her, but she looks pretty good from ten feet away and now I know that she paddles like a dream.
Tomorrow, I take in a bit of general anaesthesia and Dr. Drew Ridge takes a close look at the tumor. I guess that the fun starts next week.

So, how do I feel? That seems to be the best question right now, partly because it's the only one I can answer. I'm not particularly scared-although I don't know why. It seems like a reasonable person would be at least a little fearful and instead I feel calm-in-an-emergency. Like when the wind kicks up and you're still under full sail. What I do feel is sad: I hate the thought of leaving the party early. My fantasy was that I'd see Spencer graduate from law school, maybe hold a grandchild or two.
For today, I can tell you that a little wooden boat you built yourself is a very nice thing to look at.