Doctors and nurses

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I have not since my birth overnighted in a hospital, until this last November. Then my white-cell count crashed and I became neutropenic (no dirty jokes, thank you), and I had to spend seven nights in a nice local hospital.

It really wasn't so bad. I was often sedated, naturally. The noises at night can be a little unearthly, all kinds of hoots and hollers and cries, but if you think of it as an indoor camping trip, you won't be too far from the mark.

I learned a lot. I learned that morphine makes me see handwriting on the wall where there is none, and faces where there are none. I learned that only a qualified medical professional can tie and untie a hospital johnny from the back.

Most interestingly, I learned a lot about the difference between doctors and nurses.

If you want to continue the camping metaphor, you might think of the nurses as the flowers on the forest floor, and the doctors as the trees. Nurses are far more colorful; they can and do wear whatever colors they like. Doctors are monochrome - usually white. Nurses are everywhere; doctors sprout up only here and there. Nurses tend to be bright and cheerful (with a few exceptions); doctors are a little on the stiff-and-somber side.

Nurses fall silent when doctors enter the room. We all of us, patients and nurses and guests, wait for the eighty-five-dollar-a-word advice to fall, pearl by limpid pearl, from those doctors' lips. Nurses try their best not to impede the grave to-and-fro passage of the doctors from ward to ward, floor to floor, room to room. (Questions are met by: "I know they've begun rounds. I'm sure they'll be here shortly." The nurses try very hard not to get your hopes up; they can do just about everything, but they can't say the magic words that will pronounce you cured and get you into a speeding wheelchair headed for the exit.)

I was lucky, in that about every single one of my nurses and doctors was wonderful (with a few tiny aberrations, which you generally have to chalk up to being human). I did see one doctor come close to telling off a nurse for something - I think for using an alternate drug protocol; to be fair, I knew the nurse and know that she would never do anything to endanger the life of a patient, and the doctor looked young and sniffy and full of inferiority complex, so we will leave it at that. I know who I was rooting for.

At any rate, during my week in the hospital, I learned enough about medicine to pass some kind of premed exam.

Too bad I can't stand the sight of blood 'n guts. Otherwise I'd be a whiz of a doctor.

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Almost better

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Okay.

I am almost better. I am no longer in treatment, and they are no longer cooking my throat with radiation, and I can actually tell a difference. Chemotherapy is now also a thing of the past, and the nasty side-effects are subsiding. I am still waiting for some of the lingering stuff to pass: the fatigue, the come-and-go voice (I sound, when I speak, something like Tallulah Bankhead and/or Lucille Ball, with maybe a little mid-career Lindsay Lohan thrown in), the inability to swallow. (The latter is coming back a bit; I managed to sip some water and juice the other day without coughing, and I was very excited.)

Anyway. I am also writing again, so evidently my energy is coming back. I can’t promise a daily blog, but I can promise something once in a while – maybe once a week or so – until I am back to my usual rude vigor.

Aren’t you pleased?

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R words

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Wednesday, December 11, 2013 was the day of my last radiation treatment. I had my final chemotherapy treatment the week before, on Tuesday, December 3.

I am done with treatment. I am now in Recovery.

Recovery would be lovely if it took place in a day, or maybe two. It does not. As one waggish commentator said online: “The radiation doesn’t stop cooking you all at once. It keeps simmering for a while.”

Lovely.

Also, there are the naggingly minor side effects, like the sore throat that makes it almost impossible to swallow, and the bizarrely twisted sense of taste. (I long for real tastes, and for solid food. I was reading the biography of Muriel Spark the other day and found a mention of Muriel having drinks with Edith Sitwell – “iced gin with grapefruit juice” – that almost made me burst into tears.)

My energy is returning, which is not necessarily a good thing. I have lots of get-up-and-go, but very little to do. Christmas is useful, because I can use my time making lists, checking them twice, etc. I can organize books on my bookshelves. I can write little feuilletons like this one, when I can summon up enough brain cells to do so.

And I can day by day think about my improvement. I needed less pain medication today. My throat was less obstructed today. I slept a straight four hours last night!

So much for recovery.

There’s another R word that I don’t even want to think about right now, for fear of jinxing myself: Remission.

Remission is the absence of cancer. My radiation oncologist (who is not normally the soul of Christmas good cheer) tells me, with his gargoyle’s grin, that he cannot see any sign of the original tumor in my throat when he looks down inside. (That is, of course, with the naked eye. He is not Superman and does not have X-ray vision.) This is excellent news, and I will be having several more tests over the next few weeks and months to confirm this. Back in September, when this whole cavalcade began, I had a Stage IV tumor (“roughly the size of a Meyer lemon,” according to another clever little Internet source) under or beside my left tonsil, along with an assortment of nastily swollen lymph nodes. Now – who knows? The whole kit and caboodle appear to be gone.

I say again: they appear to be gone.

We Reassure ourselves with the good cheer of our doctors that the treatments Really Really worked. We don’t ever want to go through that kind of treatment again. (The first month or so was nothing at all. The last few weeks were Repulsive.)

So here’s to the future, and to another day of Recovery.

And you know what? The new season of Ru Paul’s Drag Race begins in a month or so.

So I have something to look forward to after all.

(Also: doesn’t the rhino in the illustration above look like a hippo to you?)

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Chemo brain

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One of my cancer-survivor friends used the expression “chemo brain” in conversation to me very casually a few months ago. “I came back to work one day,” she said, “and I sat through a meeting, but I had chemo brain something fierce, so I just went back to my office and addressed envelopes.”

Now I know what she was talking about.

Kids, it’s not so bad. It’s like a mild harmless form of dementia. It takes my current charming state of forgetfulness and turns it into a comedy routine.

Example: I take a pill and then stare into my hand, wondering if I took the pill or not.

Example: I go blank in the middle of stirring something, come to, and wonder how long I’ve been stirring.

Example: I bought some kosher salt the other day, used it, put it away, and then spent ten minutes looking for it again. It was adorable, like watching your dog (or your grandfather) spin around in the middle of the room, hopelessly confused. I searched the same shelf four times! I even took everything out of a cupboard and put it back together again! (The next morning I suddenly realized that the salt was in the pantry closet, right where it belonged. Smart mommy after all!)

Ah, the sweet bafflement of the elderly, and those of us under chemical control.

Enjoy our antics, kids.

Someday it’ll be you.

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Update, Dec 1 2013

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I started my treatments (simultaneous chemotherapy and radiation) in mid-October; I get chemo every Monday (it takes about 3 hours) and radiation five mornings a week (each session is about ten minutes long). The standard protocol for this kind of cancer is seven weeks’ therapy, which brings us to early/mid December.

Weeks One and Two were easy. I was able to work almost a full schedule, and felt almost no side effects at all. (I did notice that Thursdays were bad days for tiredness, malaise, etc.).

Week Three began to get interesting. One evening I discovered that my beard hairs were falling out by the dozens, so I shaved the whole thing off.  My sense of taste went wonky – almost everything tasted awful, like cigarette ashes and cardboard. Acidic and spicy foods were literally painful. Ice cream was okay for a while, and marshmallows, but I was eating less and less because the flavors and sensations were so unpleasant.

Week Four: now I was feeling it. I got very dehydrated (my own fault for not getting enough water). My old friend the kidney stone decided he wanted some attention too, so now I was taking pain medication both for my throat and my kidney. Swallowing was now becoming very painful too; I was reduced to eating soup and crackers, and I knew I was losing weight. Still going to work most days, but seldom for more than a few hours; I was generally very tired most of the time.

Weeks Five and Six: finally decided to stay home full-time and rest. Using my feeding tube now – frankly, much easier and efficient than I thought it would be. My daily menu is six cans of Ensure Plus, two each for breakfast, lunch, and dinner, plus lots of water.

On Friday of Week Five, I got very listless and warm; Partner took me to Miriam Hospital, where they determined that my white blood cell count had crashed over a period of a few days, and I had an opportunistic infection (probably thrush). I spent seven days there, absorbing intravenous antibiotics and waiting for my blood count to get back to normal. (The number in question, my Absolute Neutrophil Count, was around 300 when they checked me in; 1500+ is normal, and anything under 500 is dangerous.)

Anyway, so seven days in the hospital. I was perfectly comfortable, and all of the nurses and doctors were wonderful.  Partner spent time with me mornings and evenings. My voice is terrible – sometimes I can’t speak at all – which made communication with the nurses and nurses’ aides and doctors very interesting sometimes. (I ended up using a “conversation book” – if I wanted to say something more profound than “yes” or “no,” I wrote in my little red notebook and handed it to the person I was talking to.)

I was released on Friday, Nov 29 (ANC count 1000+), and am glad to be home. I’ve already resumed treatments; I have only eight radiation sessions to go, and one (or possibly two) chemo sessions. The completion date is still around December 11.

Good news: everyone agrees that the tumor and the accompanying lymph nodes are shrinking very rapidly. My neck is reddish and looks sunburnt, but everyone thinks the area looks very good. My throat’s painful, of course, and I generate mucus like an opened fire hydrant, but things could be worse. (The header picture was taken this morning a little after 3am. Notice that I have ditched the hospital pajamas. I think I look like Gale Gordon as Mister Mooney, getting ready to reprimand Mrs. Carmichael for something.)

Thanks to all for your kind thoughts and comments. 

Announcement

I've decided to suspend this blog effective tomorrow morning, Tuesday November 26.

Treatment has entered a very intense stage, and I am now frequently uncomfortable and not very often in the mood to sit and write. Normally at times like this I just publish some prewritten stuff, but I thought I might spare you my thoughts about couscous and Turner Classic Movies and the New York Times for a few weeks, whilst my innards sort themselves out.

I will try to post brief occasional updates, just to let you know that I'm still here.

Estimated time of return: Xmas 2013.

Here's hoping for a happy holiday season for everyone, including little me.

Seward's Folly Bookstore

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Back in the 1970s / 1980s, there was a little bookstore on the corner of Transit Street and Brook Street in Providence, called “Seward’s Folly.” It was run by an older couple, Schuyler Seward and his wife Peterkin.

It was a small musty wonderland of a bookstore, and the Sewards were always very kind to me. I went there whenever I could. I wanted a book by Will Cuppy the 1930s / 1940s humorist, and they managed to find it for me, and after that they knew me as “Cuppy,” because who in the 1980s remembered Will Cuppy?

Schuyler had a beard and mustache as I do now, and was very wry and very smart, and one online source claims that he was a speechwriter for the Truman Administration. Peterkin was small and walked with difficulty, but had a wonderful smile. They had two dogs when I knew them: a huge poodle and a huge bulldog – both elderly and tired – who had to be taken upstairs (where the Sewards lived) and showered with cool water from time to time in the summertime, so that they wouldn’t overheat.

The Sewards were lovable people, and very memorable.

I wonder how many people remember them now?

And who will remember me when I’m gone?

This is the very last bit of Thornton Wilder’s “The Bridge of San Luis Rey”:

“But soon we shall die . . . and we ourselves shall be loved for a while and forgotten. But the love will have been enough; all those impulses of love return to the love that made them. Even memory is not necessary for love. There is a land of the living and a land of the dead and the bridge is love, the only survival, the only meaning.” 

Do you get that? We don’t last forever, but we will leave something behind.

The Sewards left me a wonderful legacy – a memory of two intelligent kind friendly people. I hope, when my time comes, that I will leave behind some tiny fraction of the kindly legacy the Sewards bequeathed me.

(Postscript: while researching this blog, I discovered that Peterkin died only a few months  ago – on July 30, 2013 – not far away, in Rumford, Rhode Island. Schuyler evidently predeceased her, though I couldn’t find his obituary. They are survived by their daughter Abbi.)

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For Sunday: the Steve Miller Band plays "The Joker" (1973)

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My friend Cathleen and I talked about this song the other day. Then I listened to it again, and man, it’s too much. I need to admit also that Cathleen remembered the lyrics more accurately than I did.

But we were so young in those days!

“I’m a joker, I’m a smoker, I’m a midnight toker . . . “

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Vermont versus New Hampshire

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New England is made up of six smallish states: Maine, New Hampshire, Vermont, Massachusetts, Rhode Island, and Connecticut.

The territory is small, but the terrain varies greatly, and the weather varies from state to state: Vermont and New Hampshire and Maine get snow in October and November sometimes.

There are other subtle differences too.  I swear, when Partner and I drive over the border from Rhode Island into Connecticut, I can see a difference: Connecticut is more rural, and woodsier, and wetter. What happened? Did Rhode Island farmers do something that Connecticut farmers didn’t do? Or is it just my colorful imagination?

Maine is different from the rest of the New England states too. Portland aspires to be a hipster / cosmopolitan destination, but the state itself is – as Parter said recently – “Tennessee North.” It’s visibly poor and rural. No wonder it elects Republican senators to Congress.

And then there are Vermont and New Hampshire.

Vermont feels liberal and free. I love it there. I love the breeziness of Burlington, and the wind off Lake Champlain. I loved the time we spent in Bennington. I loved Rutland.

New Hampshire? Meh. It’s dull and conservative.

When you drive north into Vermont, it feels as if you’ve entered a different country. (It was a different country, for a couple of years there.) When you pass from Massachusetts to New Hampshire, it feels like – hmm – like you’ve never left Massachusetts. You really haven’t gone anywhere.

Vermont is different. Vermont is independent. It’s strange, and funny, and determined to be so.

New Hampshire is dull and New Englandish. It’s got all the things you expect it to have.

Vermont is independent and hippyish. It wants to be different. It has all the things that New Hampshire has – mountains and lakes and forests – but they’re more interesting, somehow.

Kids: if you have a choice between New Hampshire and Vermont, visit Vermont. Eat some ice cream. Have some cheese.

And tell the Vermonters that I sent you.

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I resemble a fictional character

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Partner and I ride the Providence trolley to work in the morning. He takes the trolley all the way to his office; I get off before him, on Wickenden Street, and walk about 15 minutes to my office.

But we’re almost always together on the trolley. The drivers and the other passengers know us as a duo, and are always confused when they see us once in a while by ourselves, one without the other.

A while back, Partner was riding by himself one morning when another passenger leaned forward and asked in a whisper where I was. “He’s at the doctor,” Partner said.

“I just wondered,” she said. “You know, I’ve been reading this book – ‘Joyland,’ by Stephen King – and it’s just amazing how much he looks like one of the characters.”

So Partner comes home and repeats this story to me, and I’m glowing with excitement. I’m someone’s idea of a literary character! Here, let me think: a nice kindly older man, with a sweet expression!

I sent for a copy of “Joyland,” and read it with some interest.

Well, kids, let me disabuse you first of all: this book is not Stephen King’s best work. It’s a murder mystery, with a supernatural overlay (of course). There’s a murder, and an obvious suspect. Naturally the murderer is not the obvious suspect.

But I didn’t care so much about the plot. I only wanted to find the character Trolley Passenger thinks I resemble.

I certainly don’t remind her of the narrator; he’s twenty-one years old, six feet four, and never really described physically. Nor am I his friend Tom, who’s the same age and described as “stocky.” Reader, I am not stocky.

Here are the only two physical descriptions that might fit:

Description One: “Out in front stood a tightly-muscled guy in faded jeans, balding suede boots splotched with grease, and a strap-style tee shirt. He wore a derby hat tilted on his coal-black hair. A filterless cigarette was parked behind one ear. He looked like a cartoon carnival barker from an old-time newspaper strip.”

Description Two: “He was tall and amazingly thin, dressed in a black suit that made him look more like an undertaker than a man who owned an amusement park. His face was long, pale, covered with bumps and moles. Shaving must have been a torture for him, but he had a clean one. Ebony hair that had surely come out of a bottle was swept back from his deeply lined brow.”

I’m assuming (because I’m thin, and wear a trilby)  that I remind her of Description One. How flattering! Especially since (spoiler alert!) I turn out to be the killer!

Unless she thinks I look like Description Two. In which case, to hell with her.

But I’m flattered.

(But really? Coal-black hair? Tightly-muscled? She needs to get a life.)

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