Inquiring Daytripper (Twilight Sleep, Part 2)

(posted by Bob)
Everyone forgets something—a name, an address, maybe your glasses—you feel silly. When you’re an author speaking at a library and you can’t read the opening paragraph of your own mystery novel, you really hate that one.

For me it took only ten days for a life of language to be gone. Lucky for me, like most “writers”, I had a day job: I worked on an armored car. Turned out I couldn’t read there, either. Linda, my wife, hauled me off to her doctor—I didn’t have one—and the doctor sent me to the emergency department. I had cancer.

In that part of my brain where I read and write, a mass had grown to the size of a golf ball. It was called a glioblastoma multiforme. The CT scan and MRI showed a round, white circle with a large, black, necrotic center. Grim faces all around.

The previous day I had delivered hundreds of thousands of dollars in cash. Today I was delivered to a hospital room on a gurney. Linda rounded up my sons and they all marched in in deathly cadence. I had my sons break out a deck of cards to lighten the heavy lead in the air.

That was Wednesday. A doctor stopped by to see what I looked like with hair. He gave me a thin run-down of the situation and had the nurses serve up heavy doses of pills and injections. The surgeon would study my pictures and in the morning explain the plan of attack. I was happy that there was anything to plan.

Thursday, in the morning, we learned surgery would not be done until early the following Monday. In the meantime, monster doses of steroids brought the swelling in my brain down, but sent my blood sugar skyrocketing. As a type II diabetic, I had never needed insulin. I needed it now. But I had four days to spend with Linda and my sons.

Monday came, and nothing took off as planned; we got moved to the afternoon slot. Linda and my sons passed the morning grimly, and in the afternoon, they followed my bed out to the elevator looking as if I were going to a firing squad.

Downstairs I got a central line and fresh CT scan. They turned up the juice and I was off to la-la land. They had my skull open for five hours and cut a hole big enough to search for a gerbil. Good to be asleep.

On Tuesday an earthquake shook Richmond, Virginia. A five on the Richter scale, and I missed it all.
Time became lost. All I knew was the faint light of early morning. I had no idea–where was I? I felt warm—good—cold would be bad news. I could barely move. I knew myself. Don’t panic. Just think.

…Nope. Didn’t have a name.

Light crept around me like a strange, still sandstorm. I could feel no wind, but I was lost in a quiet brownout. I couldn’t see any details or stand up. Something wrapped around my arms and legs.

Time passed. I was wearing clothing. I could feel it on my arms and legs, chose it to be my work uniform. Dressed like that, people would notice me. Still hadn’t a clue where I was. I could turn to my left and right. I set out to find someone.

My eyes were open, but I could see nothing—just the brownout, the blowing sand I couldn’t feel. I walked and walked, I didn’t know how long.

I could walk no farther; something unknown ensnared my arms and legs. I said, “Just tell me my name.” No sound came out. I didn’t like that.

I still couldn’t make anything out in the amber light. But my arms and legs had purchase again and I was off. Someone would know me. I got hung up and loose again many times, always looking, always searching, for someone who could tell me my name.

Finally, a voice said, “Mr. Bailey, we are going to…” I missed the rest because of, “Mr. Bailey.” Bob Bailey. Of course, how could I forget?

Turned out that I was in the ICU, in bed, wearing a hospital gown. A nurse unwrapped wrist restraints that tied me to the bed. My arms were black and blue. The nurse said she had had to wrestle for the entire day just to keep me in the bed. “Where on earth were you going?” she said.

“I was going to visit my customers,” I said.

The nurse shook her head and gave me half a dozen cards. “They all left you cards.”

I opened the cards one at a time, carefully, and realized that I had no idea what I was looking at, but that is another story. In the meantime the gerbil running in the squirrel cage in my skull was watching all the Art Hardin mysteries in my head.

**

Glioblastoma is one of the most swiftly fatal cancers known. But, really, we all have only one day, the same day: this one. Glioblastoma doesn’t hate you, and I don’t hate it back. It just is. We’re on a journey together.
I’m taking it day by day, through some pretty bizarre experiences.

The Rest of the Story–Twilight Sleep, part 1

(posted by Linda)

We were telling Bob’s GBM story here, and we stopped in November. The reason, to be truthful, is that Bob was doing pretty badly, and he didn’t want to post any news about his condition on his website. Well, now he’s doing much better, and I want to continue the story. One reason is that Bob has some fascinating things to post about it, and another is that, if any other family of someone with GBM stops by here, I was hoping to give them some real-world idea of what they’ll experience as their friend or family member goes through surgery, chemo, and radiation. I had a wonderful reference book to consult, don’t get me wrong, but all the stuff you will read from medical people constitutes the Sanitized Version. When you are about to sign a consent form for radiation, for example, and you read the dry laundry list of side effects: “short term memory loss, weakness, possible loss of the ability to read and/or write…” you just can’t picture how those things are going to show up in your daily life, and all the nuances of having to cope with them.
So here is the Linda version of The Day After (brain surgery. It only feels like nuclear war!) Bob’s is coming after.

***

The plan is that Dr. Alexander will lighten Bob’s plane of anesthesia early in the morning, so that he’s just awake enough for a basic neurologic exam. Then he’ll send Bob down for another CT scan.

This will all take place early enough on the morning of the twenty-third that, if I cared to get up at 5:30 or 6 AM, I could be there to hear the results and still make it to work on time.

It’s not a matter of caring. I am way too exhausted to get up that early. Each night I’ve come home and put on “Shallow Hal”—something light and fluffy to distract myself—and not even stayed awake halfway through the movie.
I set my alarm for the latest possible second and collapse into bed. Oddly enough, despite the shock, worry, and lack of sleep, the long hours of sitting in the hospital and missing work have felt sort of like a vacation. The past two and a half years have been so jammed full of work ever since I took on the care of the great aunt and cousin that every single minute has been taken up with What I Have To Do.

Go to the job, go to the gym, make food, clean up after making food, clean the house, scrub the bathroom, do our checkbook, do their checkbook, pay our bills, pay their bills, take them to visit each other every week, and every year or so somebody ended up in the hospital or somebody’s temper tantrums got them thrown out of their residence and I had to move them into a new one. I was halfway through my own novel, and pretty much had to kiss it goodbye.

Except for one week when we eked out enough money to go to the beach, I have been bowed under with work, and now just sitting around the hospital and missing a day from my job, no matter how awful the reason, feels like a break.
It’s pretty bad not to be able to get a break from anything unless somebody is dying.

I don’t expect to hear any news until later in the morning. I am halfway through brushing my teeth when I hear the
phone ring. I can’t hear the answering machine, but when I go to play back the message, it is Dr. Alexander. Bob did fine on his morning neuro exam and the CT scan looks fine. He will be sedated and on the ventilator for the rest of the day to prevent seizures. Extubation should be sometime tomorrow.

I feel hideously guilty that I wasn’t there to at least answer the phone. I mean to call back from work, but the morning schedule is too busy, and as I sit down in front of the phone at lunchtime, a strange thing happens.

A deep mechanical rumble throbs in my ears, as though a huge dump truck were backing up right outside my window. At first I think it is a truck going by, or noise from the construction next door, where they are replacing our dilapidated, fifty-year-old animal hospital with a beautiful new building, but then the walls to start to shake and the phone starts rattling on the desk, and I realize: It’s an earthquake. We’ve had a mild one in this area before, some five or six years ago.

When the shaking stops, I pick up the phone. Dead. All the phones are dead. I try the hospital on my cell phone. No luck there, either. The clinic is eerily quiet without the constant ringing of the phones, and with no one able to call in or out, the afternoon schedule is dead. I get permission to leave early and visit my husband in the ICU.
It’s a pretty day outside. I stop and switch cars and take the new convertible to the hospital. I don’t think Bob will ever be able to drive again after this surgery, so I need to make friends with this car. I can drive a stick, but my last stick was a Yugo over nine years ago. They aren’t at all the same to drive. (Don’t laugh.)

I make my way to the ICU, which is directly above the neuroscience unit, so it’s easy to find. It is a closed unit; I have to buzz to get in. A nurse shows me to Bob’s room.

In Virginia Tech’s small animal ICU, even back in the nineties when I trained there, we sometimes had a dog or cat spend a while sedated on a ventilator, and then my grandmother spent some time on one as well, so I am somewhat prepared when I walk in the room. Bob lies motionless, propped on his right side with pillows. A large, croquet-hoop-shaped padded bandage covers the left side of his head. An endotracheal tube protrudes from his mouth, taped in place, clouding intermittently with faint mist: in, out, in, out.

Monitors beep subtly in the corner. In days gone by, ventilators were all green metal and rubber accordions; now they are small, compact, tan plastic affairs with black and neon computer screens. A triple IV pump, which I’ve never seen before, drips Normosol with 20mEq/L of KCl, a Cefazolin antibiotic drip, and the familiar chalky white Propofol anesthetic. A central line snakes toward Bob’s right shoulder and disappears near his collarbone, covered with a clear tape dressing. As I walk around the bed, I spy something else: a clear tube coming from under the bandage, attached to a drain that looks like a miniature, blood-filled UFO.

This was a five and a half hour brain surgery. I can’t imagine that I won’t have an invalid on my hands when Bob wakes up. A million images run through my mind of me struggling to cope. I’ve gotten used to some help with things like paying for cars and the car insurance. Will I be able to pay the car insurance now? I picture myself having to make two dinners every night, since we don’t eat the same diet. I barely remember how to prepare a regular, cooked diet anymore. How am I going to make healthy meals for him that he’ll actually eat? What if he needs help during the day? I can’t stay home, and I can’t afford help. What if he can’t get up and down the stairs? What if he can’t communicate? What on Earth am I going to do? How am I going to do everything that needs to be done, all by myself?

Worse than that is the loss of the person I knew, the one person I could tell everything to. Weren’t we just writing a screenplay together two weeks ago? I remember all the fun we had, and with no warning at all—POW! It’s gone.
I have no idea how I’ll ever finish my own novel now. No policeman will ever sit still for all the questions I had to ask Bob in order to write it, and now every time I open my notebook, I will remember what was –all the discussions we had about it and how much he helped me, and how much fun it was to work together. If he can’t talk anymore, will he still remember, too? Probably, and how awful will that be for him?

Suddenly I am alone in a cold and hostile world, wholly responsible for a person whose suffering I won’t be able to gauge or fathom, and I am wholly unprepared. For a few minutes I actually think I might faint.

I walk over to the window and stare at the limited view, trying to control my reaction. There’s no need to faint and create a ruckus in the middle of ICU. These patients are a lot worse off than I am. And there’s no reason to panic. Nobody can do anything about what’s happened, and besides, I’m sure that if I did faint or have a heart attack right here, someone would know what to do.

In the doorway walks a gentle older black lady who introduces herself as a hospital chaplain. She says she guesses that this must be a pretty overwhelming sight for me. I tell her that I’ve worked in small animal ICU’s before and my grandmother was on a ventilator for a while, and I’m sort of used to what I’m seeing.

Then she looks into my eyes and asks, “What is getting you through this?”

I think for a minute and start to talk about stuff. I say, and this is true, that one thing you learn very quickly in veterinary medicine is that things die. Everything and everybody dies. I’ve known since my father died in a plane crash when I was twelve that tragedy visits everyone, and every so often it’s your turn. I saw my grandmother in a similar condition. And being raised around mentally ill family members who weren’t going to get better, and then being slapped with the care of more mentally ill family members, basically having to give up the idea that I could ever actually achieve the dreams I had for my life, has brought my expectations down to the level that I’m not shocked by this. It’s the reality for a great, great number of people, and now it’s the reality for me.
I realize as I talk that I always knew that something this bad was going to happen. When you marry someone who’s twenty-one years older than you are, who’s diabetic and still smokes and eats plateloads of red meat, you’re kidding yourself if you don’t understand that something like this is in your future. (Although, ironically, GBM is not linked to any of these things, and nothing that is appears to be in the cards if you believe all of Bob’s blood work and full body scans.)

To be sure, I was expecting something more like a heart attack five years from now, but still. I said that to Bob the other night, because he said he was sorry he’d gotten sick and the bills would ruin my future. “Oh, but Sweetie, I always knew this would happen.”

(Actually, when you have the student loan burden and the prior medical bills that I have, you don’t have to wait for GBM…your future’s already ruined. So he didn’t have anything to feel guilty about anyway, as if a person should feel guilty for getting a brain tumor in the first place! I told him that, too.)

The last thing I tell the chaplain is that I’ve pretty much had a lifetime of bad luck, and things are getting worse for hundreds of millions of people all over the world. Why should I expect to escape my share?

She asks me what I am most afraid of. This one is easy. I tell her I am afraid that my author husband, who wanted nothing more in his life than to have time to write, will awaken unable to ever write or speak again, and that he will be unhappy.

She stands over Bob and says a short prayer. She tells God that He knows Bob’s heart and prays for a return of function so that he will be able to speak and read and write again. I have been able to avoid crying so far, but as she prays the tears flow. I am glad someone else is here to do it, because prayer is pretty much the last thing I feel inclined toward right now. She also prays for strength for me.

I haven’t tried to talk to Bob, and the entire time she’s been here, I have seen no sign that he can hear us. I thank the chaplain, and after she leaves, I lean over Bob. “Hi, Sweetie,” I say. “I love you.”

Bob’s eyebrows go up in a way that tells me he knows my voice. He works his jaw, chewing on the endotracheal tube.
To me he looks agitated. I remember the last time I was sedated with a tube down my throat. I had been hospitalized with horrible stomach pain and vomiting every fifteen minutes. It turned out that I had pancreatitis due to a gallstone in the common bile duct—a condition which has given me heightened sympathy for the dogs and cats I treat with the same thing. I remember waking up during my endoscopy, everything pitch black; the only thing I was conscious of was something hard and solid and cold as iron blocking the back of my throat. I remember wondering in a panic what it was and how I was going to breathe. Immediately my mind showed me a picture of the time I was sucking on an ice cube when I was four and accidentally hoovered it down my throat. Although this didn’t seem quite like that, I decided I must be choking on ice, and I had to do something to get it out. I reached up and my hand contacted a cold, hard tube; I started trying to pull it out.

Then I heard voices raised; people yelling around me, and, it seemed, at me. Suddenly I remembered that I was having a gallstone endoscopically removed, that they must not be done yet, and that must be what the tube was. I remember being angry that they didn’t just calmly remind me what was going on rather than yelling at me—I would have remembered and stopped pulling, I could put up with the discomfort, I thought—before whatever they were using for anesthetic knocked me spinning back into the darkness again.

Bob had at least twenty-four more hours of this. I didn’t know whether he understood what people said to him or not. If he didn’t, it would probably be easier for him if he could just sleep it out.

There was no more I could do here. I caught Bob’s nurse at the desk and, after she assured me that he was doing well, I grabbed a hospital phone and tried to call the boys. Still no luck. The chaplain let me use her cell phone. I still couldn’t get through—the earthquake had struck down phone lines everywhere.

I needed to get a good night’s sleep; I was determined not to miss the doctor tomorrow morning. I said goodbye to the chaplain again, and left for home.

Surgery

(posted by Linda)

Eric and I dried our tears and went to play Pack-Up. After only three days in that room, it’s amazing the crap that had accumulated: Boxer shorts, shaving items, hair spray, deodorant, toothbrushes, games, cards, videos, the video player, flowers, plus the brain cancer book I was reading, my big bulky sweater, and things I had brought to keep me occupied in the case of hours and hours at the hospital with nothing to do but wait. After we carted it all to the parking garage, we headed over to the cafeteria for a late breakfast/early lunch.

And then Eric left. I don’t know why. But suddenly there I was, at the hospital alone.

Or so I thought. Later on it turned out that Barbara had come by about seven AM, not knowing that Bob’s surgery had been pushed back, to sit with me and wait for news. When I never showed up in the waiting area, she finally inquired and found out it had been postponed, and had to leave for work.

Fortunately, I had things saved up to get done. My first stop was the financial aid office. Apparently someone from there had been by the hospital room on Friday while I was at work, and Bob, loaded up on dex and with his private eye’s reluctance to divulge any personal information, had been somewhat rude. I needed to make sure the necessary papers had, indeed, been filed.

Next I stopped at the Cullather Brain Tumor Quality of Life Center, where I poured out the whole ugly story to understanding ears, and probably sounded like a lunatic utterly deprived of sleep—which I guess by that time, I was.

Finally there was nothing left to do, though, but wander down to the surgery waiting area, which I had kept walking past for days while having no idea what it was. An inquiry at the information desk soon set me straight.

The first thing I noticed was the little dark room, not much bigger than a closet, with a comfortable couch, a chair, one lamp on an end table, and a prominently placed box of tissues. A sign on the door read, “Doctor Consultation Room”. It reminded me of the “Kiss-and-Cry” area in figure skating. When they called me into that dark little cubbyhole to wait for Dr. Alexander, I sure hoped I wouldn’t need the tissues.

The surgery waiting area at St. Mary’s is right next to the chapel. Other than that, and the big volunteer desk staffed by little old ladies, it looks like a cozy coffee shop. Over the desk, a huge TV screen lists patients by number. Numbers appearing in white boxes haven’t entered the system yet. Numbers in red boxes are emergency additions to the schedule. Yellow boxes are patients in pre-op, green boxes are patients in the operating room, and light blue means the patient is out of surgery and in post-op. It is about five PM. Bob is Number 113060: green.

Our friend Cathy from writer’s group arrives after work to wait with me. She is on her way from work to the group, in fact, which meets just down Broad from here at 7:15. Last week we thought we’d be there today, which just goes to show how crazy life can get in no time at all. Why can’t life ever get crazy in a good way?

Cathy and I have dinner together and then return to the modified coffee shop to wait for news. At six PM the phone at the desk rings and one of the little old ladies calls my name. I take the phone.

It is an operating room nurse. She tells me that things have gone smoothly, with no complications, and the surgeon is getting ready to close.

Only a few more minutes before the bad news. Only a few more minutes to hang onto that slim thread of hope—that maybe it was an abscess or a lower-grade tumor, that maybe I’m not about to hear that my husband has the worst malignant brain cancer you can have. If I had known then what’s generally involved in “closing up” your average brain surgery, I would not have expected news so quickly.

Cathy promises to let everyone at writer’s group know, and I promise to call her there when Bob is out of surgery. I thank her for coming and she leaves, and I sit there trying blearily to focus on a magazine while keeping one eye on the Big Board.

The trouble with light green and light blue is that they are closely related colors, and they can look the same to tired eyes at a casual glance. The next hour went something like this:

6:30 PM: Four pre-ops, Bob in surgery, five in PACU (helpfully described in the brochure as the Post-Anesthesia Care Unit).

6:50 PM: Two pre-ops. Five in PACU. Three still in surgery.

7:00 PM: Woo-hoo!! Aw, fuck. I look up and no longer see “113060” inside one of the green boxes. I search the board. Oh—there it is. Inexplicably it’s dropped all the way to the bottom of the board. It’s still green.

7:03 PM: The phone rings at the desk and a little old lady beckons me over. Oh, no. Why would they be calling me now when they already said they were almost done and everything had gone well? I pad to the front desk, hoping if I sneak up on it quietly enough, bad news won’t know I’m there yet. It is Barbara, calling to ask how things are going. I fill her in, then sit back down on the couch. How can they take an hour to close up? How long can this waiting go on?

7:05 PM: I look up at 113060 and think it has gone blue. I blink and my eyes adjust. It’s still green. I start reading my magazine again.

A rush of air stirs beside me and the couch beside me goes “poof!” Someone’s weight settles next to me, making the cushion give in that direction. I look up to find Dr. Alexander, still clad in his surgical greens, seated on the couch. I open my mouth and not a sound comes out. Only one thought surfaces: I have not been called to the Kiss-and-Cry area. This can only be good. I glance at my watch: 7:15. On the screen, 113060 is still green.

“Everything went well,” Dr. Alexander tells me. “We didn’t have any complications during surgery. The tumor was very vascular and necrotic in the middle.” I am already nodding my head as he says the next words; there is only one thing that could mean. “I could tell looking at it, it’s a glioblastoma.”

Shit. But I already knew what I was going to hear at this moment. I’ve known it for four days. There was no point in hoping for anything different. I already knew that. I ask him if he had to leave any tumor in.

“There are no obvious pieces left,” he says, and proceeds to tell me that brain cells are very long and thin, sending tiny fingers of cancer all throughout the surrounding tissue. There is no way to get margins that might eliminate all the slender fingers of these diseased cells without causing massive brain damage. I am still nodding. I know all this, too. He reiterates to me that all brain surgery patients remain tubed and under general anesthesia for a day after surgery, that there is still a chance of seizures, blood pressure spikes, and bleeding into the brain. Bob will be sedated probably through tomorrow. He will call and let me know when he plans to wake Bob up.

I ask him what I feel is the most important question for Bob: Will he be able to speak and write again? Dr. Alexander tells me he doesn’t know. He hopes so, but no guarantees.

We sit in silence. Back in the days when I did surgery, I remember that a whole morning or afternoon like that would wear me out. “You must be tired,” I say, “after five and a half hours. That’s a long surgery.”

He shrugs. “I’m not tired. Five hours, it’s not bad.” Figures. These surgery types can do the most harrowing stuff, and not even turn a hair. I do not have that temperament. I am a fraidy-cat. Surgery freaks me out, and that’s why I don’t do it anymore. I thank Dr. Alexander for what he’s done. “I have a lot of respect for anyone who can do surgery. I can’t do it at all.” Considering that until recently, veterinarians who didn’t do surgery were hard pressed to find steady employment, my handicap has not been good for my career. Exhausted, overwhelmed, and trying not to start crying, I add, stupidly, “Hats off to you, dude.”

Dr. Alexander turns his head with a choked-off snort of laughter. Whatever. Bob has made it through surgery, and I am still coherent…sort of. In a day or so, we’ll see what kind of life he will be left with.

It is 7:38 PM. Number 113060 has just turned blue.

‘Twas the Night Before Surgery…

(posted by Linda)
The best of surgeries is never fun. Even when you’re having an operation to relieve something excruciatingly painful, even if you’re having a C-section to deliver a long-awaited baby, the surgery part is still no vacation. Especially if you’re having your skull drilled open in a marathon that’s scheduled to last some five hours, and especially if it starts later than it’s supposed to.

First of all, I should caution anyone reading this to be prepared: Having a loved one diagnosed with a brain tumor turns into a chronic sleep deprivation study, fast. First, there’s the simple worry over the loved one and the prognosis and what that will mean for the person’s life. Then there’s the gnawing despondence and anger at fate, or at the God that some people assure you still exists, over the fact that life circumstances that started out bad and trended generally worse have now taken a ninety degree free-fall straight for the bottom. Then there are the correspondence duties—more and more people come to mind who need to be notified, and then they all need news. Then there’s the influence of the caffeine you drank this morning to get you over the sleep you didn’t get last night. And then there’s The Packets.

(More on that later.)

I never knew exactly how or why, but over the course of twenty-four hours, Bob came to a more reasonable view of the disastrous conversation of Friday night. Saturday, with tears streaming down his face and mine, he sat in his hospital room with Adam and me and went over some final wishes…just in case.

I had had this crazy idea that I was going to work on the day of Bob’s surgery. We had a new part-time doctor at work and I couldn’t volunteer to work any extra days—not that I’d want to anyway, with all this going on—and with no sick pay or vacation pay, every penny counted. Perhaps it was just a form of denial—a way to pretend that what was happening, wasn’t really happening. But once I woke up from denial and realized that the wee hours of August 22nd might be the last time my husband would speak to me, ever, I knew I had to call work and tell them I wouldn’t be there. I also decided to pull an overnighter at the hospital on Sunday night. If I knew I had a five hour brain surgery to look forward to, I wouldn’t want to spend the night alone.

I would just like to caution anyone who needs to stay overnight in a hospital like that, especially at St. Mary’s, to get some extra sleep the night before if at all possible. I was already sleep-deprived anyway, and the accommodations there weren’t a whole lot of help.

Eric had left us his portable DVD player and gone home to sleep early (a wise move), promising to be back around 5 AM. We watched a movie until around 11:30, at which time Bob said he was tired and promptly dropped off to sleep. I don’t know how he managed it—I wouldn’t have—but I’m glad he did. I, on the other hand, had to try out the hospital chairs.
The nurses on the floor had searched for a cot, but none was available. They moved one of the regular chairs out and moved in a recliner for me to sleep in. While I’ll always appreciate them for letting me stay and for doing their best to make sure I was comfortable, these recliners leave something to be desired.

I had noticed, whenever Eric visited, that he kept getting up from his chair and walking around, complaining that his leg had gone to sleep. Well, my entire butt went to sleep—amazing considering the amount of, um, padding thereon. I might have drifted off anyway, but every time I almost did, the monitors over Bob’s head went: BEE-EEP! They seemed to do this every ten minutes. How anybody gets any sleep in there, I’ll never know.

I tried to change positions, but every time I did, my comfortable, gauzy, wear-to-the-hospital-overnight pants made a noise on the imitation leather like a giant fart, and I was afraid I’d wake Bob up.

At three AM I had a choice. I could move to some comfortable seating outside the unit where I knew I’d be able to sleep, and possibly miss Bob if he woke up—or move a chair out in the hallway in case Bob woke up, and get no sleep. I did go out of the unit for a bit, but then I opted for the hallway. I felt bad leaving Bob alone, and anything was better than sitting in the dark looking at nothing while the monitor beeped its crazy head off and pins and needles crept down my hamstrings.

I dragged a chair and placed it against the wall in the hallway across from Bob’s room, where I could look in and see if he woke up, and then hit the coffee machine. I was going to need it.

At five AM Eric showed up, as promised, and made me pour my coffee out since Bob wasn’t allowed to have any. I forced down a choice word and tossed it down the sink.

And then we sat and chatted. And sat. And sat.

Around nine o’clock a nurse called down to find out what was up. It turned out that Bob’s surgery had been postponed to one PM.

I will always be amazed at how well Bob took everything. I’ve faced a lot more minor surgery than this with fear butterflies the size of eagles having a midair fight in my stomach. Then we were informed that after they took him downstairs, surgery wouldn’t be for a while yet. There’d be a final pre-op CT scan first, and then Dr. Alexander would have to study the results. I can only imagine what must have gone through Bob’s mind, having to lie stock still and stare at the machinery and know every bit of what was about to happen, with no family around and no distractions at all.

At ten-thirty AM Transport arrived. Eric and I followed Bob to the elevator, kissed him, held his hand, said our “I love you’s”. Bob broke into tears as the elevator doors closed. I’ll never forget how vulnerable he looked lying there dwarfed by this big white hospital bed.

Muddy Waters

(posted by Bob)

Suddenly I had nothing to do. A busy life seemed to have faded away like morning dew. Linda carried away my clothes and shoes and left me in a hospital suit that left my butt hanging out. (I think she wanted to make sure that I didn’t make a break for it.) I asked her to call Dunbar and tell them I was going to miss my shift. Thursday was a bank service day, with all the coins and cash delivered by the hand truck load, and the boss needed to find a replacement before everyone who was available would be lying low to let this little gift drift by. Unbeknownst to me, Linda told Dunbar that I would not be returning to work—ever.

My sons showed up in lock step with Linda, with their faces of horror badly hidden. I’d seen these faces before when I went to visit my father as he lay dying in the hospital. My first reaction was hoping to be as courageous as my father. It lasted until I wondered, without saying to Linda, “What the hell did you tell the boys?“

Adam, my youngest son, had brought the cards. Eric, my middle son, rounded up the chairs so we could play euchre. I tried not to call either of them by name. It was not that I didn’t remember who they were. I knew them like parts of my own body, remembered their lives—when they were born, when they took their first steps, and all the way to their college graduations—I just couldn’t get the pronunciation of their names correct. My oldest son, Sean, was in Michigan. I couldn’t call up his name, it started with an ess and all esses had taken a bus to parts unknown. Sean, much later (and after Adam and Eric had helped me find my missing letters), told me he had thought that he was on his way to my funeral.

Euchre is the famed “easy“ card game. Used only half the cards. How can it be that hard? And a game that was played at blinding speed with different “bowers” at each hand. Simple! Linda remained distracted, even though we slowed the game down to a walk. My sons and I ignored the elephant in the room. Linda could not get the circus out of her mind. I sat next to her and helped her with her cards even though she was my son’s card partner.

We passed the night until at last I was alone. I thought about what a mess I had just made of all our lives. The nurses kept bringing in the dexamethasone and the anti-seizure drugs as the night passed. By morning I was in an emotional crisis over breakfast corn flakes. The surgeon arrived shortly after and found me in tears over being unable to read. I still couldn’t give a name to the hospital where I was—despite that for five years I had picked up their bank services and delivered their change.

Linda and my sons arrived before lunch. Adam had brought the Scrabble game. I could make up some short words. When my sons were growing up the Scrabble dictionary was left open on the table and fair to peruse—the idea being that it was more important to learn new words than to challenge the other players. Good for me just now!
On Friday Linda had to go to work. My son Adam arrived early in time to interrogate the surgeon, Dr. Alexander, for me. Adam is a RPSGT sleep technician—the guy that wires up your head and reads your brain squiggles while you’re asleep. Turns out that the doctor Adam worked for was Dr. Alexander’s friend. The best of all worlds! Adam could ask the questions for words I could not call up and he spoke the short term words used by the medical gang. Dr. Alexander’s reputation made me very lucky to have him—and it didn’t hurt that he was going to get to show off for his pals.

After all the drugs I felt like I was stoned. Like I was not quite awake, or my brain was just not in tune. My blood sugar had rocketed off to 300 and plus. I am eating—the diabetic meal—at five thousand calories (according to the printout that came with them) like a lumberjack, but I was losing weight because my body had decided to consume itself instead of the food I was eating. They’d put me on insulin. I had abandoned the bed for a chair during the day and started walking laps around the ward ostensibly to get my own coffee, but we were struggling to get the numbers below 200.

All nature of plans needed to be made. My son Eric arrived after lunch and Linda arrived after work. I signed some checks for Linda and told her what bills I needed to pay. My van needed a heater core. I told my sons to clean it out and Linda to call the Kidney Fund to pick it up. Without a job I couldn’t afford the repair. I told Adam to pick up my Gold Cup Colt and take it home. If anything happened to me, Sean, my oldest son, would have to make do with my Glock. If I died, I told them to have me cremated and keep me in a jar over the fireplace. Adam said that I had had other plans. He was right. “There’s no money for anything else,” I said. I thought that that was the end of the subject.

It was not!

Sunday was a good day. Round nine or so my sons loaded up the cards, Scrabble game, and the DVD battery player and promised to bring back the toys when I was back in my room. Linda and I were both exhausted. In the hospital you aren’t allowed sleep. Linda had been burning up the computer at home and was staying the night with me, being that Monday morning my surgery was to begin early. Linda announced that she thought that she should have a power of attorney and a living will.

For me, that just about cut it.

If I had thought for one fast hot second that I was coming out of surgery dead, or as a doorstop, I would not have stayed the first day. Linda had been hanging crepe since the emergency hospital. She thought that I was on death’s door and told everyone else the same thing. I had told myself that that was just ”her way.” She always expected the worst and believed it, but now I was hot and heartbroken (being fired up on five days of dexamethasone didn’t help.)

Yes, I had thought about this. I did talk about how to dispose of my body in front of my sons, so that there was never any doubt. For me, that was like taking your foot off the gas if the green light was getting a little stale.
Once upon a time in my past life I would have looked at the MRI, put on my shoes, gone home, and bought a case of beer to drink while I watched the sun set. Linda had made my life sweet. When we found each other were both in personal wreckage. I wanted to us to have some time for us.

“If you can’t talk or walk,” said Linda. “You may not want to go on with the treatments.”

“That’s not going to happen,” I said. “I knew I was in trouble and that is why I asked you to go to the doctor with me. I know where I’m at now. I did this for us, to have time. Because I love you. After the surgery, we are going to do all of the treatment. For us to have each other. “

***

Linda remembers the talking about the living will and power of attorney before I talked to my sons. She thinks it was Friday and there are good reasons.

I don’t remember it that way—but!—I had a knot the size of a golf ball in my brain and I was stoned hospital Rx happy (or maybe not so happy.)

Nonetheless, the rest got covered and by Sunday night we watched Fox News for the reports on Hurricane Irene. Linda settled in to spend the night with me, before the surgery on Monday. We snuggled together in the bed as long as we could. The nurse couldn’t find Linda a cot. She finally wrapped up in a blanket and slept badly in a chair.

You’re Not Supposed to See It That Way!

(posted by Linda)
I take home the blue plastic basket that’s been left for us in Bob’s room. Inside is a flyer announcing the hours and location of the Cullather Brain Tumor Quality of Life Center. I also find a packet containing a toothbrush and toothpaste, a little packet of thank-you cards, a small flowered notebook, free meal tickets for the cafeteria, and a book entitled, “100 Questions and Answers About Brain Tumors”. Someone must alert the Cullather people the living instant a new brain tumor patient arrives, because they’ve certainly gotten this basket up there in a hurry. Time to start reading.

I check the answering machine to find that the wonderful Dr. Taylor has been following Bob’s condition and has left her cell phone number in case either of us wants to talk. You don’t find many doctors who do that these days.
I sit at the computer and start emailing. It’s 10:30 at night. I don’t have Bob’s sister’s email or his mother’s, but I email a few relatives on my side, and Joe, who runs our writer’s group and has been a friend for many years. I know he’ll help get the word out. Joe does more than that. In no time I find a link in my inbox to a clinical trial at VCU.

I have to tell people at work; at any time I may have to be gone at a moment’s notice. One thing I find out quickly: People don’t want to hear bad news. As soon as I share what’s happened and what I’ve found out, I get the same response: “Oh, don’t say that!” There’s no point in being negative, I’m told. Hope for the best.

But to do that would be stupid. I saw the scan and I’ve read the statistics. Somebody has to be prepared for what’s ahead. I know I cannot convince myself that this is really something benign, that the surgeon will get it all, that life will go on as before. That how to pay the medical bills will be our biggest problem. It is unhelpful to me to have people suggest, in word or in tone, that I’m supposed to ignore reality, that I would be a better or more “right” sort of person somehow if I could just tell myself it’s a Grade I, believe it, and not bring anyone else down with the facts and the truth of my life.

“You’re not supposed to see it that way!” I’ve heard this viewpoint for years. Books like The Secret, Conversations with God, and The Law of Attraction have certainly made plenty of money popularizing this worldview. When I was younger I devoured books like these and made an absolute idiot of myself. What I found out was that nothing can change reality, not your hopes, not your wishes, not your dreams, not how hard you work, not how good you are at something, and certainly, certainly, certainly not how deeply you believe something or how happy and hopeful your feelings about something are.

I crashed big time finding this out. And knowing it will stand me in good stead. But for now, knowing what I know against the chorus of, “Oh, don’t say that! Are you being negative again?” is like walking through a long dark tunnel alone.

GBM: the Great Big M…

(posted by Linda)
I sleep for maybe four hours and wake up with a brain that feels like molten lead. I stumble around our tiny condo, taking a shower, making coffee, trying to figure out what to wear to the hospital. A million worries swirl around in my shocked and sleep-deprived mind.

Bob is dying. In a few short months, he’ll be gone.

This place isn’t kitted out for a dying person with dementia. I can’t sleep in the other room, and this Tempurpedic weighs 500 lbs. What if he falls over it? There is only one door, and nine concrete stairs up or down. I try to imagine hospice nurses moving equipment in and out of here. I am ashamed of the half-finished bathroom, the crumbling floors. I finally gave up trying to do it all this summer, went to the beach, and just quit cleaning. This place is going to need so much time and attention before anyone else comes in here, it’s incredible. How am I going to do everything that needs to be done?

Bob is dying. In a few short months, he’ll be gone.

We don’t have a lot of money, and I can’t quit work. Can we even afford hospice at all? No. I think of the horrible times that are going to come. Can he stand being in that condition? Will my husband even know me anymore? If he doesn’t, if he’s that unaware, well, okay. If he does—I shudder to think of that spark I knew, of his particular awareness, trapped inside a body and brain that don’t work anymore.

Bob is dying. In a few short months, he’ll be gone.

One obvious thought that’s totally missing from all this whirlwind cognition is: How can this be happening/This can’t be happening. That experience is for people who’ve already had good lives. After you’ve grown up in a deeply dysfunctional family, been so socially maladjusted that the neighborhood children and the kids at school hit you, yelled at you, and threw gum in your hair until your father died in a plane crash when you were twelve, you chose a career you wouldn’t be happy in because you had no sense of individuality at all and were afraid of what family would say if you changed your mind, had the college money you would need spent by other family members before you turned eighteen, saw your financial future pretty much disappear because your student loan payments made it impossible to afford health insurance and you needed two major surgeries, faced the fact that your family was hopelessly ill and would never get better, than had to face the fact that your dream of becoming a bestselling novelist was naive and childish and you were going to have to give it up, you don’t need to ask if something horrible like malignant brain cancer truly is a reality in your life. You know it’s a reality.

I am too tired to drive the Mustang; it’s a stick shift and the last stick shift I drove was a Yugo back in the nineties. I take my trusty little Pontiac over the river to the hospital, stopping on the way at the 7-11 on Libbie to pick up Bob’s favorite Coke Zero. By the time I get there Bob has already been for body CT scans to check for cancer in the rest of his body. The results are negative. I try not to think what this means: that this is a primary brain tumor and that much more likely to be the dreaded Grade IV.

Bob’s sons have beaten me there. At family gatherings like Christmas and Thanksgiving, games like euchre and Scrabble are a staple; Bob has asked them to bring games to pass the time, but since he’s really fumbling for words now, the boys have only brought cards.

I have always had a euchre block; despite making A’s in subjects like calculus and physics and earning an advanced degree, I have never been able to absorb the rules of this simple card game. Add to that my molten-lead headache and the fact that I haven’t even tried to play it in almost a year, and I am absolutely hopeless. My playing is a disaster. The boys have split up and partnered Adam with Bob and Eric with me, since today neither of us can play well.

Eric explains the rules to me for the third time today, but my molten-lead brain refuses to take them in. Bob is dying. In a few short months, he’ll be gone. How are we going to pay off his credit card? I’m going to have to turn right around and sell this car we just bought. Can I even handle the insurance on one car without his paycheck? Will we have to file bankruptcy? As we play they boys are advising us to file for divorce so I don’t lose the run-down little condo I bought before we were married. Do we really have to get divorced just so we can pay our bills?

I make my tenth stupid mistake. Eric loses his temper. “Will you just quit saying you’re stupid and try to learn this game?” he shouts, throwing his cards down.

But what am I supposed to say? “I just found out that your father has the most malignant brain cancer known. Radiation and chemo don’t do anything for this. His chances of living even two years are dismal. I couldn’t sleep at all last night. I’m reeling in shock and my brain simply won’t work at all, so please excuse me.”

No, clearly I cannot say that. The guys want to hope for a few more days, and I have to let them. If I told them, they would argue with me, anyway. So I keep hanging my head and repeating, “I’m really sorry. I’m just stupid, and I cannot understand this game,” over and over like a parrot, which only makes Eric angrier.

Steroids are a mainstay of brain cancer treatment. All that growth and pressure within the calvarium only makes the symptoms worse. Neurosurgeons try to reduce brain swelling with monster doses of dexamethasone, a corticosteroid ten times more potent than prednisone, known on the neuroscience floor by its brand name, Decadron, and affectionately known in the veterinary world simply as “dex.” As the nurses pop in and out with more and more dex, I look up from the card game to ask how much my husband is getting.

“Six milligrams…” the nurse says, and I relax. I am thinking of the side effects of potent steroids, which are legion.

“…every six hours,” she finishes, and I stifle a gasp.

Holy shit. No wonder they are running in here getting blood glucoses so often, and no wonder my diabetic husband’s blood sugar is slowly going through the roof. I can only hope they’ve remembered the antacid, especially when they add a pain reliever for his headache, and they have: Pepcid. But the dex is clearly helping Bob, who is talking more easily and remembering words better already—which makes me question the current shift away from it in veterinary medicine, where its use in head and spinal cord injuries used to be mandatory.

The beds in this ward tilt and fold all the way up to serve as chairs. If we really squish together Bob and I can use his bed as a love seat, which is good because there are four of us and hospital regulations forbid more than two chairs per room. Tired as I am, I try to outlast the boys until visiting hours are over. After twenty-five years as a PI my husband can play the strong silent type with the best of them, but in private he’s every girl’s dream: a snuggler. I know he is joking and acting brave for the boys, but I also know he needs what he always wants before he goes to sleep—kisses and a big, warm cuddle.
It’s nine PM and the boys put their cards away and say goodnight. Bob signs a few of his checks so I can go home and mail his bills for him. We crank the hospital bed out flat. I climb onto the bed with my husband, and we hold one another and weep.

Peek and Freak

(posted by Linda)
The PA tells us that Bob has to be transferred to St. Mary’s Hospital off Monument, because St. Francis isn’t equipped for brain surgery. He will go by ambulance and be seen by the neurosurgeon on call.

I wonder about the ambulance transfer. Bob actually drove us over here. I know the way to St. Mary’s; I practically lived over there before I had my hysterectomy nine years ago, and I’m going to have to drive over there anyway. When the six hundred dollar bill arrives, I roll my eyes and shake my head. Why don’t they let the uninsured save money where they can?

While Bob was in MRI, I have wept quietly in Room 13 and then used the phone to call Bob’s sons, Adam and Eric. They share an apartment a couple of miles away, and they say they are coming right over. It is nearing six PM, and I haven’t eaten in hours. Our friendly PA lets me into the EMT’s break room, where I grab a microwave sandwich, an apple, and a packet of cookies. It’s going to be a long night.

The boys, Bob, and I sit in Room 13 and chat during the long wait for an ambulance. Our PA stops by again. Bob may have seen a doctor in here somewhere, but I haven’t.

“What is this?” Bob asks. “I have a thing in my head?” He points over his left ear, which is where The Bad Thing is reputed to be.

“It’s a mass. We’re not sure what it is yet,” our PA tells him. “You’re going to need surgery to find out. Whatever it is, it’s dead in the middle. Have you ever had any serious infections in the past?”

“No,” Bob says.

“Yes, you have, Sweetie,” I suddenly remember. “Remember your knee?” Years ago, before I ever met him, Bob fell on an ice slick in the middle of a surveillance job in the dead of Michigan winter. He broke both his knee and his ankle; his knee went septic and he was in the hospital for weeks and in a wheelchair and on crutches for a year. The injury ended his PI career. His first wife, also named Linda, took a job at H&R Block; when she got transferred here, Bob had written his first novel and was looking for a writer’s group to help him get it ready to submit to publishers. That’s how we met—poring over drafts of Private Heat. Years later, when Linda One died of a sudden, massive heart attack, Bob and I got to be a lot better friends…but that’s another story.

I know that the Ghosts of Infections Past can sometimes reincarnate as brain abscesses. (I also had a high school teacher who died that way, so I know these tales don’t always have happy endings.) But anything is better than a brain tumor—well, maybe except for Alzheimer’s. I seize on the tiny morsel of hope. Quickly, I tell our PA about Bob’s septic knee.

But deep down, I know better. If the ER staff really thought they had a diabetic with a brain abscess, they’d be running around placing IV’s, drawing blood cultures, and hanging some Big Dog Antibiotic Drips as if there were a house on fire. They aren’t. Which leaves me with the unhappy prospect of a fast-growing tumor, one growing so fast it’s cut off its own blood supply and is rotting out inside.

It is not a cheerful thought. I keep it to myself.

I poke around after hours at the ER desk, trying to find someone to retrieve our car now that the valet parkers have gone home. On the starlit drive to St. Mary’s, my thoughts swirl with worry and disbelief. How are we going to do hospice in out tiny, overstuffed condo, with boxes of stuff stashed behind the bed, the dining nook parquet coming up where we haven’t had time or money to replace it, and my Tempurpedic on the floor in the living room, where I can hide from Bob’s snoring and my back doesn’t hurt? Now I absolutely have to get someone else to handle my aunt and cousin’s affairs—and I already know no one else in the family will do it. How can this be, when last week our biggest concern was money for a few days at the beach? Bob is only sixty-three. Don’t I at least get him until he’s seventy?

I arrive to find my husband settled comfortably in a private room on St. Mary’s sumptuous neuroscience unit. They had wanted to put him in ICU, but ICU was full. The fact that they wanted to put him in there worries me.

Bob has an IV started and his blood glucose checked, but he isn’t allowed to eat, since the nurses aren’t sure when surgery will be scheduled. I still haven’t seen a doctor, and I am anxious to see the scans. A veterinary education leaves one prepared to read and understand almost anything. I feel a trip to Googol coming on.

A word to anyone with a relative or a pet under medical care: Medical staff are human, although we’re trained not to act like it. No one wants to alarm or upset patients or family members by pointing to something on an X ray or CT scan and saying, “Oh, shit,” or shouting, “Oh, my God!” In school anyone who does this is soon broken of the habit by a very stern resident or professor. In our own clinic, where the quarters are close and the wooden doors thin, exclamations like, “Oh, my God, did you see—“ followed by “Shhh!” are common. So I am well acquainted with the human emotions behind the medical understatement of the year delivered in The Professional Monotone. As someone who’s felt only part “educated professional” and mostly “regular Joe on the street” my whole life, I got the “Shh!” and the Glare more than most. So I’ve had to become practiced in the use of The Professional Monotone myself.

Adam and Eric have gone home and I have waited up with Bob. I am afraid we will have to wait until morning to talk to a doctor. But Dr. Richard Singleton, bless him, comes to our room at midnight. He performs a quick neuro exam and shows us Bob’s MRI.

I am aghast. A gigantic black hole has taken up the cranial portion of my husband’s left temporal lobe. Together with the “Milky Way” flare of edema surrounding it, it looks like it’s taking up nearly a quarter of the available space inside his skull.

I open my mouth. Automatically, The Professional Monotone comes out. “That’s very large,” I hear myself say.
“That’s the thing in my head?” Bob says, pointing. “My gosh. That’s really big.”

I know Dr. Singleton knows more than this. We always do. He isn’t volunteering any more information beyond when surgery will be scheduled, how long a procedure like this generally takes, and how long Bob will have to be in the hospital. I will have to pin him down.

“In veterinary medicine,” I say, hoping I don’t sound like a moron, but not much caring at this point. I need to be prepared. “We often have to make an educated guess about what a tumor might be. We have to, because people don’t have any money, and they’re trying to make a decision. You know, based on the age and size and breed of this dog, our top three guesses are X, Y, and Z. So, based on what you see here, your top guesses would be what?”

“Based on the age and size and breed of this dog,” Dr. Singleton repeats, apparently somewhat amused. I don’t care; fine with me. “Metastatic tumor or an astrocytoma.”

By metastatic tumor I know he means lymphoma or lung cancer. Lymphoma might not be so bad. Many lymphomas are highly responsive to chemo now, if not curable. We’ve had cats do well with CNS mets. But Bob is a smoker. Lung cancer would suck. It would really, really suck.

Astrocytoma. Breath spray for my date with Googol.
Down the street from St. Mary’s is a 7-11. I stop there on my way home and buy a king-size Nestle drumstick. I wander around the darkened shops at Libbie and Grove at midnight, trying to tread the idea into my brain. Yesterday everything was fine; today my husband may be dying. I compare the new trees on the street with the huge ones that have been there twelve years. I stare at the flowers in the darkness.

The clerk in the 7-11 gave me the perfunctory, “How are you?”

“I don’t know,” I blurted. “My husband just got diagnosed with brain cancer.”

***

I am sitting in front of the computer at two o’clock in the morning, trying to find out what I am likely to hear on Monday. Monday is surgery day, five days from now, first thing.

There are four grades of astrocytoma. I am relieved to find out that the lower two, especially the first one, are very slow growing and are associated with survival times of ten years.

If Bob has one of these, that sucker must have been in there forever. This could bode well. Then I read about the higher grades. “Aggressive…highly malignant…tend to recur with higher grades than the original tumor.” I know what this means. Rapidly progressive disability, head pain, seizures…I try not to picture my husband in such a terrible condition. Bob has the most agile, fun mind of anyone I know. Why is God so much like a borderline parent? Whatever the child loves the most, pick that to take away. The median survival time for a Grade IV astrocytoma, also known as glioblastoma multiforme, is about a year. I know that most of that year isn’t likely to be good time at all.

There are age predilections. I read, hoping for a Grade I. I realize with a sinking heart that almost all of the Grade I’s are young people. The vast majority of people Bob’s age have the Grade IV’s. While this could be considered some degree of mercy from God, I suppose—at least the younger people who haven’t really lived yet get the longest life expectancy, rather than the older people who’ve already lived—right now it doesn’t make me feel much better.

I rush ahead, keying in “glioblastoma—images.” You can find anything online these days. Can you tell what it is from the scan?

The first MRI I click on looks exactly like my husband’s. Same black hole, same Milky Way flare—it’s even the same size and same location in the brain. I compare it to scans of mets, Grade I’s, and Grade II’s.

I go back to the first image I saw and scan the text. “Highly distinctive appearance…can often be diagnosed on MRI.” They aren’t kidding.

I am sitting alone in front of my computer at four AM on the morning of August eighteenth. Before Bob, before Adam, before Eric, before anybody else except Dr. Singleton, I already know my husband is going to die.

The Neuro Exam–or, Things You Can Tell Just By Looking At ‘Em

(posted by Linda)
I was supposed to take my great aunt and my handicapped cousin out to lunch that day for my cousin’s fifty-eighth birthday. (The great aunt and cousin are a tale all by themselves. I have been responsible for their care for the past two and a half years. Ten years ago Aunt Fran took them out for my cousin’s birthday. They got in a fight and Aunt Fran got so upset she went home and had a massive stroke and was disabled and aphasic for the rest of her life. Can you maybe see some kind of hex associated with August 17th, here?)

When Bob asks me to go with him to his doctor’s appointment, that tells me he must be really worried. Bob never asks me to go to doctor’s appointments; he really doesn’t go as often as he might himself.

We’d just driven this cute little ’04 six cylinder Mustang convertible home a few days before. We spent the night before the appointment cruising to Sonic with the top down and scarfing burgers and fries. But that “Tomorrow might really be bad” feeling was hanging over us all evening.

The new St. Francis hospital here is dark. On the outside it’s imposing, with columns and flowers and fountains and a fancy brick driveway with valet parking. When you walk inside, it’s no less imposing, with its tall ceilings and shiny floors—but mostly it’s dark. Dark, marbled walls, dark shiny floors. I felt like I was walking into a cave.
We found our way to Dr. Taylor’s new office on the third floor. Dr. Taylor used to be busy enough to need a full-time nurse practitioner, but the recession has pushed her into consolidating with this new practice here. As we walk in I am relieved to see some of the same smiling faces behind the reception desk and the same friendly nurse I remember. At least these people haven’t lost their jobs.

Bob thinks his problems might be a side effect of a new generic for diabetes that X Medical Practice put him on a few weeks ago when all this started. He’s also been worried that perhaps he has Alzheimer’s. As a veterinarian, I know that this is unlikely. Based on the changes I’ve seen just in the past two days, there is no way Alzheimer’s would progress this fast. I am afraid my husband has had a stroke.

You can’t help but sit there, in the exam room waiting for the doctor, and wonder what this will mean for your future. Bob is halfway through his fourth book, one he’s been struggling for years to have the time and leisure to write. It’s an ambitious project, with all new characters who take turns telling each successive chapter in the first person. Will he be able to finish it? Can he still be happy if he can’t? I think about our prospects of being able to afford more medication when just glucose test strips already cost so much. Surely Bob will have to stop smoking. (How am I going to swing that one?)

A human neuro exam is interesting to watch when you already know how to perform one on a small animal. I sit back and take mental notes in case I ever find myself trying to decide whether to call an ambulance at three AM. Oriented to person, place, and thing. Cranial nerves okay. Normal and equal strength and sensation in all four limbs. Able to walk a straight line, heel to toe. Good coordination on both sides—Dr. Taylor has Bob stretch his index fingers out in front of him and touch his nose repeatedly.

All the while she is chatting with him, and I am counting the mishmashed and fumbled-for words. Bob is telling her about his writing career. When this person who proudly recites his awards and award nominations to passers-by at book signings, many times an hour, fumbles for them in the exam room, it’s an ominous message: No, you weren’t imagining this. Yes, he really needs to be here. Yes, this is really bad.

“Well, this looks serious,” Dr. Taylor tells us at the conclusion of her exam. “You’ve got a left temporal lobe lesion—that’s close to where the speech area is. That’s why you’re having trouble remembering words. I’m thinking you’ve probably had a stroke. You need to go straight downstairs to the emergency department, and we’re going to call down and let them know you’re coming.”

If it is a stroke, there’s a good chance my husband’s problems may be permanent, or even get worse. As we ride downstairs in the elevator, I reach out and hold his hand. “I had a feeling they were going to have to keep me,” he says. I am thinking: Is this going to get even worse? What if I have to stay home and take care of him? I can’t afford to quit my job. And, How are we going to pay for this? I try not to think about the other things this could be. The word “lesion” conjures all sorts of unpleasant memories of things in the “rare” column in our neuro books back in the office, things no one wants. Please, just a stroke, I think. That, we could possibly deal with.

When you don’t have to wait forever in an emergency room, there are only two reasons: One, they’re having a slow day, or, two, they’re really worried about you. We’re tucked away in Exam Room 13, and Bob is trundled off for first a CT scan, then an MRI. We are waiting for the transport to the MRI when a serious-looking physician’s assistant motions me out of the room.

I’ve given bad medical news a million times myself. There’s a reason this man doesn’t want to talk to me in front of my husband. This is worse than a stroke.

“We’re seeing a mass lesion on the CT scan,” he tells me. “We’re thinking this is probably a tumor.”
A hot flush rushes over me and cold tingles chill my arms. All the things we’d had planned for the future careen through my head: A short, cheap beach getaway next month. Finishing our novels and starting rewrites on a screenplay we’d written together. Less time on the aunt and cousin, more time for each other. In less than half a second, all those everyday, ordinary, normal things are gone, and death is a real possibility. I glance down the hall toward Room 13, where Bob doesn’t know all this yet.

He’s still lying there, thinking it’s a mild stroke or some strange drug reaction. Overnight at the hospital, home in a few days. It’s clear who’s supposed to tell him.

There’s a moment where the floor is dissolving under me and my insides shudder like leaves in the rain. I can give bad news; I’ve been doing it for eighteen years. But he was going to finish his novel. But—we haven’t even been married five years yet.

I look up at the PA. “Damn it,” I snap the words out. “I was so hoping for a stroke.”

He blinks at me. “I don’t think I’ve ever heard anybody say that.”

The Day We Finally Got Bob to the Doctor

I’ve been pestering my 63-year-old writer husband to go to Dr. Taylor for years, ever since he was diagnosed with diabetes. Bob has preferred to go to X medical practice for cost reasons, but diabetes care isn’t so good there. Dr. Taylor has a special certificate for diabetes management, has great word of mouth, and is a lot more reasonable in cost than the endocrinologist our friend Cathy sees. Cathy loves her endocrinologist, but Cathy has health insurance. We don’t.

Several weeks ago a doctor from X medical practice called up wanting to put Bob on blood pressure medication when his systolic BP was only 126, and wanting to double his metformin dosage before looking at his lab work. That, plus the speaking and reading problems he’d been having the past two weeks led him to consider a different doctor.

Every writer should have a second pair of eyes copy-edit their work. On his last book I fixed the too vs. to errors, who vs. that errors, and other favorite Bobisms before he turned the manuscript in. Bob likes to read a lot of things aloud—the newspaper, the episode synopses of The Sopranos and Sex and the City on DVD. They put me in speed reading when I was twelve; I’m used to being able to sight read just about anything faster than Bob can. For this reason, I wasn’t worried when my husband first started mangling the Sopranos DVD blurbs during our nightly Sopranos marathon. Anyone who has the full set knows the color scheme on the first two seasons is difficult to make out; *I* was having trouble reading it. But when he made “Kris-tap-mum-mum” out of “Christopher,” it jolted me out of my complacency.

I looked over at him, narrowing my eyes in a nonverbal “Say-what?” “Sweetie, do you need new glasses? Can you see that OK?”

“I can see it, I just can’t make any sense out of it,” he said.

Something was definitely wrong.