(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.