One Good Year

(posted by Linda)
The next morning the alarm goes off at six and I grit my teeth and drag myself out of bed. If I hurry, if I really hurry, I should be able to hit the ICU at seven, while I can reasonably expect Dr. Alexander to still be there on rounds. I don’t have to work today and really feel like I need more sleep, but morning rounds is my only chance to catch my husband’s surgeon.

Dr. Alexander tells me Bob is doing well and he plans to extubate later today. “What time?” I ask, knowing Bob will be looking for me the second he wakes up. “About three,” is the answer.

I’m worried about how agitated Bob seemed yesterday and I don’t want him upset, plus I do not realize how light his plane of anesthesia actually is. (Bob tells you himself in the previous entry.) I have a dozen errands I could run between now and three PM, and I believe I will do more good there than here.

I head for the hospital cafeteria for breakfast, then I go to the Cullather Brain Tumor Quality of Life Center and pick up financial aid information. One thing I can say is, help is out there; but the other thing I have to say is that it comes in reams and reams of paper that are little more than this link and that phone number. I page through them and my eyes glaze over. How can anyone be expected to sort through all this information? Especially when they’ve just been hit with a horrible diagnosis, the impending loss of their spouse, the sudden upheaval of routine, and hours upon hours of tears and lost sleep?

My next stop is the financial aid office. I have heard that, prior to Bob’s surgery, someone from here visited Bob while I was at work in an attempt to qualify us for assistance. Unfortunately, Bob having worked as a PI all his life, is very distrusting anyway of giving out personal information, and six milligrams of prednisone every six hours haven’t helped much. I have heard that he had been, um, somewhat rude. I apologize to the nice ladies and make sure the appropriate forms are filled out correctly.

I go to visit my great aunt Jean. I have been responsible for her affairs for the past three years and Bob has been a lot of help. This all started on her daughter Jean Ellen’s birthday and I didn’t make the birthday lunch, so I want to catch my aunt up on how Bob is doing; she’s been worried and anxious for news.

My next stop is the VA hospital off Route 10. I have heard that veterans can use the pharmacy there at discount prices or for free. I investigate and find out that this applies only if you are a patient there. Well, that’s never going to happen; Bob distrusts VA hospitals and would never become a patient at one. Too bad; I have looked up the chemo for this and discovered that it’s prohibitively expensive. How will we ever afford it?

On my way out I see a Dunbar armored car pull up. My husband’s coworkers have been terrific, calling to find out how he is, sending cards, and visiting him in the hospital. I approach the truck, careful not to startle the driver, and scratch a hasty note on paper I find in my purse–they’re not allowed to open the door. When the driver realizes who I am, he opens the door a crack and I give him a progress report for everyone.

I get back to the hospital at 2:30–plenty of time, I think, to get back up to ICU before they wake Bob up. I am apprehensive. Will he be able to talk? Will he be a semi-vegetable?

I buzz into the ICU and notice one thing right away: Bob has been moved. The room right by the nurses’ station is empty. Of course, I do know what an empty room might mean. But nobody was expecting that.

I walk forward and give the nurse at the desk my name. Immediately another attendant at the back of the unit, a middle-aged black man I assume is probably a nurse, flags me down with giant sweeps of his arm.

“Are you Miz Bailey?” he says. “Come on back! He’s been looking for you. Come on back!”
I am confused. They extubated Bob before I got up here? I’ll bet he’s been looking for me! I wouldn’t want to wake up alone in this place, either. For a moment, I don’t want to go in. If I don’t go in, I don’t hear or see any bad news. The male nurse hurries forward.

“They extubated him?” I say, blinking. “They extubated him already?”

“Yeah. He’s already had one visitor, an older gentleman from a…writer’s group? Brown hair and glasses. But he’s been asking for you.”

Joe. He’s describing Joe, who has run our writer’s group almost fifteen years–it’s where Bob and I met. Joe’s already been here and gone?

They must have extubated Bob a while ago. Now I feel really bad. Here I’ve been gallivanting all around Richmond, thinking I have all this time to kill, while my husband has been awake for who knows how long, alone and disoriented, and looking for me. Probably with several nurses sniffing, “Where’s the wife, anyway?” At least Joe was here. Good grief.

At least he’s talking. That is good news right up front. If he’s awake and he’s got enough wits to ask where I am, we’re already several miles ahead of what I was expecting.

I follow the male nurse back to Bob’s new room, a smallish cubicle with a glass wall. He is propped up in bed, and as soon as he sees me, his eyes turn red and big tears start down his face. He looks odd somehow, besides the big padded bandage, but I can’t place exactly what is off about him.

“Where were you?” he says. “I was looking for you. I was worried.”

It’s hard to hug somebody in a hospital bed. I hold back tears and reach over the railings for a clumsy hug, avoiding all the padding over his left ear.

“I’m sorry, sweetie!” I tell him, kissing him on lips wet with tears. “They told me to be here at three o’ clock!”

“I kept asking where you were,” he says. “Linda,” he states, as if it were the answer to a question, with a downward chop of his index finger. “I remembered ‘Linda’.”

And then he breaks down sobbing. I’m assuming it’s because he woke up here alone and thought something had happened to me, but through the tears I discern the other reason. I have to tell him his son’s names.

He tries to tell me Joe was here. He can’t remember Joe’s name, either.

Maybe things aren’t as rosy as I thought. I think that maybe this is permanent. But I was preparing myself for a husband who might wake up bedridden, who might wake up mute. Bob is talking, and he’s making sense. I think to myself that if he can’t remember names, this much I can handle.

I apologize to him over and over. If they had told me the right time, I would have been here.
“They brought me all these cards people sent,” he says. He reaches over, and sure enough, there’s a small stack of greeting cards on the bedside tray. Cards from people at work, cards from people in writer’s group. He shows them to me, and then he opens one and begins to read.

I am astonished and overjoyed. He reads very slowly, and I have to help him with every third word, but he’s reading! He’s actually reading!

A therapist from Sheltering Arms, the local rehab hospital, comes in to assess him. I watch as she leads him though some exercises. He speaks slowly and he gets stuck on the same words over and over. “Diabetes” is a word he can’t seem to remember; also, “Dunbar”, and anything that starts with a “c” or a “k” sound. He can’t ask for coffee because he can’t remember the word “cup.” At work, he’s made pickups here hundreds of times, but when he’s asked where he is, he can’t remember the name “St. Mary’s”. Instead, he answers with a number that has nurses and speech therapists scratching their heads: “Fifty-eight oh-one.” They need only to look at their paychecks; it’s the street address of the hospital.

The speech therapist is there maybe forty-five minutes. Bob aces maybe seventy-five percent of the tasks she gives him. He is doing noticeably better when she walks out than he did when she walked in. As she leaves, they are bringing him his lunch. Bob asks for a beer.

I excuse myself to visit the ladies room–the toilet in here slides out from inside a cabinet, imagine that!–and flag down a nurse outside. I introduce myself and remark on how well my husband is doing. “What time did they extubate him?” I ask.

“About ten AM,” says the nurse.

Ten AM?? I want to scream at the nurse. All that upset and all those tears. Couldn’t they have told me the right time? I was still in the hospital at ten AM, finishing my breakfast and signing financial aid papers, while that whole entire time Bob was having this painful cold tube pulled out of his throat and panicking, wondering what had happened that I wasn’t there.

“But…” I say, trying to remain polite. “Dr. Alexander said be here at three PM.”

“Oh, I wish he wouldn’t tell people that,” scoffs the nurse. “He doesn’t know what time we do things up here.”
What can I say? I buzz out of the unit and head for the ladies’ room.

It’s a hot day out, and I wash my face and brush my hair to freshen up. I find myself smiling, floating higher and higher. Bob is weak, but he’s talking, and he’s reading! It may be all over soon, but it is not all over yet.
I walk out to find Adam and Eric seated in the waiting area. I bounce up and down like a schoolgirl on speed. “He’s reading!” I tell them. “He’s doing great!”

Both boys stare at me as if I have lost my wits. Finally Eric speaks up, treading carefully. “Um…you do realize this is terminal, right?”

I wave my hand in dismissal. “Oh, I know that. I knew that the first night. But he’s talking! He’s reading!”
The boys look at each other, get up, and follow me back into the ICU. Adam, registered sleep technician that he is, watches Bob’s ECG and coaches him on blowing into the standard issue plastic lung-clearing exerciser. Bob blows and coughs, blows and coughs. The nurses have gotten him out of bed and sat him up in a chair, where he writes, “cup cup cup” over and over on a pad of paper, trying to fix the little word back in his vocabulary. His handwriting is as shaky as a six-year-old’s, but over the seven hours I am there, his speech improves tremendously.

I bend down to kiss him goodnight, when I suddenly realize what it is that looks “off.” “Sweetie!” I say. “They shaved off your moustache!”

He reaches up and feels his top lip, where they taped the endotracheal tube in. “They shaved off my moustache? Why’d they do that? Crap!” We all smile. He is sounding a lot like the old Bob as I kiss him good night.
I leave the hospital smiling.

We found each other late in life. We have been married almost six years. I wish I could say they were under good circumstances, but they haven’t been. Bob fixed up his house in Michigan for two years–those were two years we spent apart. He sold it right at the beginning of the housing crunch, so instead of coming home with working money to write a fourth novel, as he had planned, he came home in debt. Neither one of us has been able to write until just this year, and I still can’t. First it was work, work, work to get out of debt from the house, and then–just when it looked like, just when it looked like, just when it looked like–both of us might be able to slow down and spend time doing what we’d dreamed we’d do, writing–

I got the call about my aunt and cousin, and the past two years has been jammed full of the hardest sort of work. Trying to get two querulous incompetent people who think they’re competent, and worse, think they’re rich, to agree to move to a supervised living situation and then behave themselves there is not easy, and full of tense moments. I found out I had been looking at the writing business with the eyes of a two-year-old, and basically gave up on a goal I’d had for ten years. Between the Jeans and the house and the bills and work and high cholesterol (read, healthy meal preparation and the gym), I had to give up writing altogether.

And then GBM happened.

I don’t pray to a God anymore; I no longer believe in one. But I tell myself as I leave that if we can have one good year together, just one good year, I will be happy. Horrible things lie in wait, but then again, who actually has that grace filled, easy death one night in his sleep? Not as many as want it, that’s for sure. If we can have some peace, if we can have some quiet, if Bob can finish this one book he’s been trying to write for four years, if we can have one good year before everything heads south, I will be satisfied.

And it looks like it actually might happen.

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