TRUDGING THROUGH THE GRAND MAL FUNK

The Thinker: too much on his mind

So my doctor, the one who told me on Thursday that I have cancer, was supposed to call me on Friday to tell me how bad it is. He was waiting for an additional report from the pathologists. He didn't call.

I didn't call him either, which is what I imagine any normal person would do under the circumstances—call the guy and find out. I don't want to find out. Ignorance of these matters is as blissful as it gets. I'm already imagining the worst I can. Why would I want to find out it's worse still?

Meanwhile, I'm exhausted all the time. Much of this is due I suppose to the fact that I just had surgery. I keep telling myself that it was endoscopic, outpatient surgery, and shouldn't be that big a deal. My doctor keeps reminding me that I was really sick when I first came to see him so I shouldn't expect my recovery to be a simple thing. Bolstering this view is the fact that, after two weeks, I'm still hosing saline solutions up into my head and blowing alien life forms out several times a day.

On the other hand, it may be depression that's making me tired. I was actually feeling better for a few days. I had more energy. I was staying up for longer periods of time. I'd weaned off the pain meds. I was busy conceptualizing a new series of artworks featuring tubas of all things, and feeling a renewed sense of excitement about that as well as writing. Then I found out about the cancer.

Now I'm suspended between feelings of not wanting to be in bed and not wanting to be walking around as if nothing's the matter. I spend a lot of time also suspended between really dark thoughts and trying to manage a bucket list that contains not one item that I can afford. My fault really. I mean I didn't have to load the list up with Lamborghinis, waterfront properties, exotic vacations, and a stable of Triple Crown contenders. What the hell was I thinking?

I'm going to have to trudge through this grand mal funk. I don't really have a choice. I figure it will take a couple of days. That's all it took the last time a doctor told me I had cancer. I've got prior experience, so I ought to be better at this process than some poor schmuck who just found out he's got cancer for the first time. Experience counts for more in living than it does in the current job market where, apparently, it just means you didn't have the good sense to move on when you had the chance.

I've done this cancer thing before. I intend to survive cancer however many times I have to in order to die from old age. Fortunately I'm already pretty old so I think I've got a legitimate shot.

In any event, it's a shot I have to take. I've got stuff to do. The tubas are not going to photograph themselves. Nubile young women are not going to come knocking on my door to ask would I mind very much taking their pictures with gigantic wind instruments.

The several books I have in various stages of completion are not going to finish themselves, even though the characters in them seem determined to do stuff that I haven't asked them to do. The characters may be free agents, but in my experience they just won't write anything down. They certainly don't make my life as an author very easy.

Now that I'm jobless, retired, and mostly idle, I don't have any time left over to be sick and dying. I'm just too busy. It's not easy to save up for a Lamborghini when you don't have any income. You've got to stay focused.

Day 248 – Modern Communications

          Nelson has been complaining of pain in his back and shoulder. It started in his back, and he was convinced that it was sciatica. When it moved into his shoulder he became convinced that the physical therapist was overworking him. We got her to go easy on him for a few days, but the pain did not abate. Anne made him an appointment and took him to the doctor on Thursday last week. The doctor sent him for x-rays. As usual, Nelson undertook to make the rest of us suffer for this unexpected additional medical procedure. Anne bore the brunt of it because she was stuck in the car and in the waiting room with him.

          The results turned out to be bad news, although just how bad is yet to be determined. Among his other ailments, Nelson has prostate cancer. At his age this has not been particularly worrisome as prostate cancer is a slow moving disease and fairly easily contained with medication. The likelihood is that, at 89 years of age, Nelson is going to die from one of his other health problems before the cancer ever gets him.

          Unfortunately, this has turned out to be a contrary case. Apparently Nelson’s prostate cancer has metastasized into his spine, neck, and shoulder. The doctors want to do some additional tests, of course, to confirm, but this looks to be the issue underlying Nelson’s pain.

          There has been a lot of discussion back and forth between his daughters. Nelson’s daughters like to plan things in minute detail and well in advance—even things over which, realistically, they have no control. They just like to know what is going to happen and when. As a group they are responsible, caring, and sensitive to a fault, but they are not ideally suited to dealing with surprises. This new development has thrown them, and is requiring a lot of discussion in order for them to get their plans readjusted in their heads.

          I am reminded, perversely, of the time when my wife and her sisters discovered e-mail. E-mail represented a tremendous boon to their collectivity. It expanded their ability to keep up with one another by quantum bounds and was therefore cause for a lot of excitement among them. I was excited myself because I saw in e-mail a way for the ladies to increase their connections to one another and at the same time actually save money on long-distance telephone charges. Boy was I wrong.

          Here’s what happened. One of the lovely sisters would decide she needed to communicate something of relative importance to her sisters. She would carefully craft an e-mail and send it, often to all three of her sisters. Once she’d hit the send button she would commence to worry that somehow the missive had gotten lost in the labyrinth of wires, cables, and junctions that comprised the internet. She would fear that the message would not be received, or not be received timely, or, even worse, accidentally sent to a Donkey Kong screen in some remote Chuck E. Cheese pizza house where a raucous t-ball team was celebrating their first victory of the season.

Once the sister was sufficiently convinced that her message had indeed gone astray—a process that usually took about 20 minutes—she would begin making long distance calls to her sisters to see if they had received the e-mail. A lengthy discussion would then take place about the contents, the spelling, the things they might have forgotten to mention, and ending with heartfelt wonderment about the marvels of modern technology that allowed them to stay so connected. Indeed.

Anyway that’s what they’re all doing now, my wife and her sisters, calling and e-mailing one another, trying to work these new developments into their plans for the rest of Nelson’s life. Nelson just wants to be left alone. He’s not really interested in having cancer or not. I think he suspects the whole thing is just another elaborate trick being played on him by the growing number of doctors he’s offended in some way. He doesn’t feel any worse than he did yesterday, and that was plenty bad enough, thank you very much.

Day 199 - The Only Good Thing about Doctoring

           Nelson is alternately afraid of, happy with, or mad as hell at the people who provide his care on a daily basis. He seems consistently pleased only with Anne, even though she most consistently gets him involved in stuff he doesn’t want to do. Anne likes to arrange outings and adventures to keep Nelson engaged. She wants to keep him active and interested in the world around him. He hates these outings—or pretends to. Sometimes it’s hard to tell.

There is almost always an argument about whether or not he will go on one of these jaunts. Nelson protests that he doesn’t feel well, and the rest of us should just go without him. Anne tells him that we are not leaving him home alone. Then he gets mad about that. I think his real frustration is that the rest of us can’t have a good time without having to drag him along. There is some nobility, I think, in his feeling that way, but it still means we have to play out this big scene before we go anywhere, even if it’s just out to lunch. The curious thing is that as soon as we actually get him into the car and committed to the outing, he starts enjoying himself. For all the grief he gives her, Nelson loves Anne with all the capacity he can muster. He should.

The rest of his care team is a different matter. He thinks the daily caregiver is stealing from him—well not so much that she is, but that she would if we don’t make a concerted effort to nail everything down and lock everything up. He can’t stand the physical therapist, Ben, who comes twice a week to make him walk up and down the street.

Nelson thinks that Ben works him too hard, and yet he seems actually to be getting stronger and more sure-footed as a result of the work. Nelson hasn’t noticed this part however, or if he has, he has attributed it to a natural return to his former vigorous self rather than the result of a slow and laborious rehabilitation.

There is also an occupational therapist that comes once a week. Nelson likes her because she is cute and vivacious and they seem to have a lot of fun together. That is Nelson tells her stories of growing up in rural Kentucky and building radar and communications installations in the South Pacific during World War II, and she listens and asks questions. Then they play ball. She bounces a soft rubber ball at him and he catches it. The purpose of this exercise is to improve his eye-hand coordination and his balance. Apparently this is a lot more fun than walking with Bill.

In spite of Nelson’s obvious preference for the occupational therapist, however, he spends the two days before her arrival worrying about the visit, hoping that she will cancel, trying to get Anne or my wife to call and change the appointment, and generally telling anyone who will listen that he just isn’t up to any more of this therapy nonsense and why won’t we just let him sit in his chair and watch TV in peace.

          In addition to the two therapists, Nelson gets a weekly visit from at least one nurse. The one who usually comes functions as a kind of case manager, and her job is to monitor all the aspects of his care and his health and report back to the doctors anything that seems to require attention. She also draws blood once a week, which is sent off to the lab to determine whether they need to adjust his medications, especially his Coumadin. Nelson likes the nurse because she is attractive and friendly and spends a lot of time with him listening to his complaints as well as his stories. But, like with the occupational therapist, he spends an inordinate amount of time dreading the nurse’s visit even though he seems to enjoy it quite a lot when she is here. He told me that she reminds him of one of his daughters. He means by this not that she is particularly like one of the four girls he raised, but that she could easily be a fifth. She fits into his world that well. He just can’t stand the thought of her coming over until she gets here.

          I get Nelson. I empathize. He may be a pain in the ass to deal with, but from Nelson’s perspective so are we. I see myself in mirrored in his attitude. I feel Nelson’s flinty disposition crystallizing in my soul. I’m 61. Nelson is 89. Any way you cut it my life is more than half over. You can argue half-full/half-empty if you want. It won’t make any difference to me. Once you get beyond the halfway point, both ways of stating the case are equally unattractive. My life is either way over half finished, or way less than half of it is left. And I’m not ambling into old age amiably either. I’m in freefall, and picking up speed. My cup of infirmities is filling up. It seems over half full already, and I don’t have enough cup left to be comfortable with the pace.

          I’m already unhappy about the things I have to do that I just plain don’t want to do because I don’t feel like it. My feet hurt. My knees hurt. My hips hurt. My back hurts. I know I’m not going to feel better about being dragged out and forced to maintain a semblance of sociability. I may feel better about myself. I may even have fun, but when I get back I’m going to feel worse than I did before I left.

This is where Nelson is. He would be happy to sit in a chair until we get back from our little adventures, and then to continue to sit in his chair while we tell him all about it. That way he’d get all the social interaction without any of the physical discomfort. He’s already got enough memories. He doesn’t need to exert himself to make any more. It would be pointless. His memory is fading. Why tax it with new stuff…especially since it’s the old stuff that makes him feel good. It’s pretty much only the old memories that interest him.

          One of my favorite things to tell people is that, as we age, memory is the first thing to go. After they digest this, I tell them that actually it’s not, but it is the first thing that we can talk about. This always gets a knowing look. I think it’s very funny, but it is only funny because it is alarming. No one wants to know that the first thing to go is the thing you can’t talk about. But no one wants to talk about that either. I did manage to have a conversation about it with Nelson though. I guess he’d already complained about so much other stuff he didn’t think much about crossing the line to the stuff I’d rather not have been talking about.

          At the time Nelson’s list of maladies had not started to expand exponentially. He was not then troubled with Parkinson’s or heart trouble. He was taking Flomax for an enlarged prostate, and he had just had a lens replacement for cataracts. He was already fairly peevish about his treatment at the hands of his doctors though.

He was convinced that the ophthalmologist was bent on punishing him for some slight—this because Nelson had complained about the time and trouble the cataract surgery had involved. The time and trouble as it turned out was because of the Flomax, which for some reason increases the difficulty and potential for complications in eye surgery. Nelson hadn’t known this. How could he? Because he didn’t know, he didn’t tell the ophthalmologist he was taking the drug. The doctor may not have known to ask at the time. The risk was a new thing then. Now it is well known, and my own ophthalmologist asked me right away if I was taking Flomax when we scheduled my cataract surgery.

I was riding somewhere with Nelson one day. I don’t remember where, and to be honest I’m not sure that I was riding and not driving either. Nelson was busy grousing about the eye doctor. When he had exhausted that topic he started in on the Urologist who had prescribed the Flomax. He didn’t like that doctor either, and not because of the trouble the Flomax had caused during the eye surgery. No, Nelson was upset that one of the possible side effects of some other medicine the Urologist wanted to put him on was that he might develop breasts.

“What the hell do I need with breasts at my age?” he asked me.

“Not much, I expect.” I was trying to be agreeable. I wondered what he might need with breasts at any age, but I didn't say anything. It occurred to me later that Nelson may have been making a joke, but if that was the case he promptly forgot what was funny about it.

“Exactly,” Nelson said. “So I'm not taking it. If I did, next thing they’d have to give me would be another pill for that for the breast thing. I’ll be all day taking pills to fix stuff that other pills caused. There won’t be any time left over for anything else. You all might just as well put me in the ground then.”

“Nobody wants that,” I said.

Nelson looked over at me like he wanted to be sure I meant that. “Better do it anyway,” he said. “Otherwise the doctors are going to wind up with everything. I’ve had it up to here with all this damn doctorin’.”

“I can see how you might feel that way.”

“Those doctors got a pill for everything,” he said, “and everything they give me makes something else go wrong, and then they want to give me another damn pill for that. I think they’re all getting kick-backs from the drug companies.”

“Could be,” I said, “but what makes you think that?”

“Cause they’ve always got free samples to give away to get you started.”

He gave me another one of those looks. I couldn’t imagine where he was going with this.

“You remember when all my daughters and all you sons-in-law threw that wonderful dinner for our 50^th anniversary?” he asked.

“I do remember that, and you’re right, it was wonderful.”

“Well I was talking to my doctor just before that, the one who stitched up my thumb when I almost cut it off on the table saw.”

“Uh huh?”

“He asked me if I wanted to try some of that Viagra.”

Nelson paused here, I guess to let the impact of that set in. He would have been 78 or 79 at the time he was talking about. I wasn’t about to say anything at this point to break the flow of his story.

“I asked him didn’t he think I was too old for that kind of thing. He said he wouldn’t know about that, but if I was interested he had some free samples he could give me.”

“So you got some?” I asked.

“I did. I never got any more, but I have to tell you, it’s the only time I ever got medicine from a doctor that worked like it was supposed to without screwing up something else.”

“I’ll be damned,” was about all I could think of to say.

He gave me one more look. “Don’t you tell a soul I told you that,” he said.

Day 157 - Settling In

          Life with my father-in-law, Nelson, is going to be a challenge. I knew this going in. I hope I’m up to it. Nelson is 89 years old and has a host of medical issues. Principal among these is Parkinson’s Disease. Parkinson’s is not pretty. My dad had it and it finally killed him in 1993.

Most of us are familiar with the tremors and the mincing little steps associated with the disease, but many of us—myself included—are surprised to learn that it also causes depression and paranoia. It tied my dad up into knots. He was bed-ridden for the last two years of his life. I never noticed paranoia or depression in him, but I didn’t spend very much time with him after he got sick. I lived too far away and was too busy trying to carve a future out of my association with Henry at the time.

Nelson is a different story. He’s got paranoia to spare. He thinks all his doctors hate him and that they are deliberately trying to torture him. This doesn’t prevent him from saying ugly things to them whenever the opportunity presents itself. Then, when he’s had time to reflect on what he said, he’s convinced that the doctor he was ugly to hates him even more. In Nelson’s mind every test, every pill, every bit of unpleasantness associated with his diagnoses and treatments are the result of the assorted doctors he has offended exacting their revenge on his ancient body.

          He sees a lot of doctors on a regular basis. There’s his regular doctor, a DO, who is managing the Parkinson’s. Then there’s a neurologist to assist in the Parkinson’s care, a urologist for his enlarged prostate, a cardiologist for his hypertension and congestive heart failure, an ophthalmologist who looks after his eyes since he had cataract surgery, a dermatologist, and the folks who made his last set of dentures that he refuses to wear because they don’t fit.

He also has a collection of nurses, therapists and caregivers who come by daily or weekly to help him re-stabilize after his last hospital visit. A visiting nurse comes by twice a week to draw blood and update his charts. A physical therapist comes twice a week to work on his strength and endurance issues. An occupational therapist comes by once a week to work on his balance and help him maintain essential skills for dressing himself etc. A caregiver comes 4 days a week to do his laundry, make his bed, clean his bathroom, iron his clothes, and feed him lunch. My sister-in-law, Anne, comes every Thursday to take him to his many appointments. She also stops by every night to see how he’s doing, and if he needs anything.

All this activity keeps him pretty busy, and generally speaking, mad as hell. He hates the physical therapist. He likes the occupational therapist and the nurse well enough because they are pleasant and attractive, but if they dare suggest anything new—anything he’s not already familiar with and already on the schedule—he doesn’t hesitate to go off on them. He doesn’t trust the caregiver. He loves Anne who has been taking care of him non-stop for years, but he will whine and cuss and heap abuse on her for the duration of every trip to a doctor’s office or lab or x-ray. Anne is a saint.

My wife and I are here to take some of the load off Anne. We’ll make sure he gets breakfast and dinner, do the grocery shopping, take him out during the week if he needs or wants to go somewhere, manage his many medications, and generally see to the things that are not being done now. In exchange we get a place to live rent free.

Nelson also intends to buy all the groceries, although I plan to split those with him. Between my wife's income and my unemployment checks we can surely afford to pay for our own food. I’ll do the cooking because I have been and I’m good at it.