Awaiting a possible death sentence

Twenty-three hours and ten minutes from now, I will be told whether I have metastatic cancer. That moment will either be the beginning of a new life (a life that will include an early death) or it will be, more or less, a continuation of my old life.

Once is how many times I have seen the surgeon who will carry the news (the second time I was unconscious). How might I prepare for hearing my death sentence from the lips of a stranger, a woman stranger? Getting through that moment seems, in this moment, like the hardest thing I will ever have to endure. Mostly, I don’t want to cry. Silly at this might seem, I am, after all, a man, and I possess a man’s vanity.

Along with terror, I feel a strange exhilaration, as if I had bet my life savings on the roll of a roulette wheel. Sure, I could lose big, but I could also win big, and what bigger prize to win than my life?

Post surgical adventures

I don’t have biopsy results. The surgeon said she would replace the bone while I was on the table if the lab could tell right away that it was malignant, but the lab couldn’ tell right away. No news is good news, I suppose—or at least it’s not bad news (I’m too tired and drugged to know which). I am to learn if I have cancer at 3:00 Thursday.

I feel much better than expected, but that could be because of the Percocet. I observed after past surgeries that I would feel good enough that I would think I didn’t need painkillers, only to have the pain return with a vengeance when I stopped them. It’s definitely harder to beat pain back down than it is to keep it down in the first place. Still, I will replace my next Percocet with a Vicodin and see what happens.

I was in excruciating and ever worsening pain yesterday after being intubated, and I got no relief even after being given the highest dosages allowed of at least a half dozen painkillers. One of the funny things about painkillers is that they can knock-you-on-your-ass if your pain level is within their ability to handle, but if it’s beyond what they can handle, you can’t even tell you’ve taken anything.

The nurses were at a loss to understand my pain since it was well beyond what most people experience. They just knew that my oxygen level was below ninety, and that I was reporting intolerable pain even after having taken everything they had to give. They wouldn’t discharge me, yet they couldn’t help me, and they wouldn’t let me use the one device with which I thought I could help myself—my CPAP. They didn’t appear to know much about the machine, but their main objection was that they would have to call the hospital electrician to inspect it, and that this was too much of a bother for something they had no confidence in anyway. When I degenerated to the point of no longer being able to speak (due to the pain and lack of oxygen), they called the electrician.

He arrived in five minutes; picked up the unplugged CPAP; examined it for five seconds; said, “Looks okay to me;” and put an orange sticker on it. Ah, the security that comes from a professional safety inspection. With my first breath, I felt significant relief, and my oxygen saturation soon jumped from eighty-eight to ninety-nine. My theory is that a swollen trachea caused the pain. By opening my trachea with positive air pressure, the CPAP both relieved the pain and allowed the passage of air. Since a CPAP’s normal use is for sleep apnea, I can understand why the nurses didn’t believe it would help a patient who was awake, yet they could have spared me hours of misery if only they had called the electrician sooner.

The morning of surgery

The time is 4:20 a.m. I have to be at the hospital at 5:45. I am calm. What will be, will be, and I am prepared to face it with dignity.

People with their throats cut generally look dead; my first death

I never saw anyone with their throat cut but what they looked the worse for wear; in fact, they looked dead and they didn’t die smiling either. Judy (that would be Doctor Judy) says not to worry, that she cuts two and three throats a week sometimes. What I want to know is how she finds that many people who (a) need their throats cut and (b) are willing to let someone do it.

I had my first serious surgery about eight years ago. It was such a new and unusual procedure that I had to drive 110 miles to the Oregon Health Sciences University to see the one doctor in Oregon who knew how to do it. Dr. Hwang was so young, and little, and smart, and cute—not to mention caring—that I would have adopted him in a heartbeat. He suggested that I have the surgery in two parts to minimize the risk, but I wanted it ASAP, and I had no qualms about trusting him to do it up right. The morning he was to operate, the anesthesiologist came in first (as they always do), and offered to give me a little something for anxiety. I told him I wasn’t the least bit anxious—I was just enthusiastic. He thought I was putting him on, and we got into an argument about whether I was anxious. When he saw that he couldn’t win that one, he left. I thought he might hold it against me, but he and Hwang both did bang up jobs in surgery and, what with being awake but stoned out of my gourd, I enthused all over the place about what great doctors they were.

God, but I miss those days when trust was a given and surrender came easily. By now I know the routine well—the pre-dawn drive to the hospital, the forms to sign, the wrist-bracelet, the humiliating gown, the hasty “vitals,” the endless questions from the endless procession of nurses about why I am there and when I last ate, Peggy’s attempt at casualness, the anesthesiologist’s visit, the trip to the bathroom with a nurse carrying my IV, the stretcher ride to the holding area with the lights passing overhead and the curious strangers looking down at me, the inevitable crashes at corners, and finally into surgery. There, the many people in masks and gowns, the perfunctory courtesy, the move from the stretcher to the operating table, my diseased fingers turning white from the cold, my arms being stretched to either side like the crucified Jesus, the additional warm blankets that are never enough, feeling helpless and exposed, waiting eagerly for an injection of happy juice. Then recovery. I will have stayed awake for surgery if possible, so I pass the time listening to other patients moan and puke, and trying to recollect everything that happened. If the surgeon gives a shit, he comes by to tell me how it went.

Is recovery where I’ll be told if I have cancer? Probably not. I’ll be put to sleep this time, so I’ll be among the moaners and pukers. Probably Peggy will know first, and probably Peggy will be alone. Then again, maybe no one will know. The surgeon said that calcification might make an early diagnosis impossible. If this is so, and if I have cancer, it will mean a second surgery to replace the bone. Or not. I’m not going balls-to-the-wall unless I have a decent chance of survival.

I used to wonder how a doctor tells a patient he has cancer. I thought they would have learned some special words in medical school. I’ve had four doctors this year (three in October and one in January when I had hernia surgery) throw out the possibility, and I was struck by their casualness. The neurologist who brought it up in October told me over the phone. Phone calls from a doctor usually mean bad news, but I wasn’t expecting anything like what I heard. “It might be cancer, and if it is, it would have spread from someplace else—possibly the prostate. You need to see your internist about what to do next. Good bye and good luck.”

If someone who didn’t know English had tried to judge the nature of the call from the tone of the caller, he might have thought that Blockbuster was telling me I had a movie overdue. I imagined that this doctor never gave me or my problem another thought after he hung up. And why should he?

I first watched a man die when I was a fourteen-year-old ambulance attendant. The call came at 7:30 on a Sunday night, right in the middle of Mission Impossible. We found the man alone and unconscious on his partially mopped kitchen floor, and he died as we lifted him into the white Ford station wagon that passed as a Mississippi ambulance. CPR hadn’t been invented, and when I started to apply an oxygen mask, the boss laughed and told me not to waste his money.

As we drove back through town, the streetlights were still burning, the man at the filling station was still pumping gas, and people were still leaving church. I had expected the world to stop, and it hadn’t even slowed down. That was forty-five years ago. My belief that my kind was the center of the universe and the pinnacle of God’s creation also died that day.

If only I have enough time to finish editing my journals, I will be grateful. If I don’t have cancer at all, maybe my other problems won’t seem quite as bad.

What good is God?

It takes about four hours to do the yard up right, and I don’t remember a time in my adult life—except once when I had the flu and twice when I had strep—that the job would have tired me out, yet I only lasted 45 minutes today before I had to slow down. After ninety minutes, I felt the need to take an extended break. This is how I am spending my break.

My fatigue made me remember my neighbor, John. Five years ago, he drove 120 miles over the Cascades, climbed a 10,358 foot peak, and drove home, all on the same day. Few people could do as much at any age, but John did it at 55. Instead of being pleased, he was upset that it drained all his energy. He went to the doctor the next week, and died of prostate cancer the next year. While I was working in the yard, I seriously entertained the thought that I really might be facing death.

It was this melancholy realization that made me think of Eugene Sledge, a World War II soldier who wrote about the battles on Pelieu and Guadalcanal. Sledge said that new soldiers typically think they’re too smart to get killed. When they observe that more experienced soldiers than themselves get killed all the time, they conclude that they could die, but that they probably won’t because they’re special to God, and God will protect them. Then they see their friends die—sometimes horribly—and they are forced to ask themselves what makes them more special than those people. When they can’t think of anything, they conclude that, not only might they die, they are almost certainly going to die.

Then I remembered Dana Reeve, the wife of Christopher Reeve, who died of lung cancer less than a year after his death. I saw her on a DVD about health care recently. She was well dressed and appropriately made-up, but her eyes were tired, and her pauses for air came too often and lasted too long. I admired the hell out of that woman because she radiated such incredible courage by trying to help other people live longer when she was so near death herself. I had the thought that a good death would go a long way toward making up for a life that, if not failed, is nothing to brag about either.

When I listen to Pachebel’s Canon in D, I often reflect that, if Johann Pachebel didn’t do another thing but to write that one piece of music, a piece that comes nearer to embodying the divine than anything else I’ve ever seen or heard, it would have justified his entire 53 years. What, then, have I done to justify my years?

The one thing that I just cannot see my way to bear is my knowledge that I will be leaving Peggy alone. If only I could have her hypnotized so that she would come home from the funeral wondering how she ever put up with me to begin with and glad that I was dead, I would prefer that a million times better than to think that she will experience a grief that is beyond anything I can imagine. I picture her here, in this house, crying alone in the wee hours. I picture her coming home at night without me to greet her and without her supper on the table. I picture her taking her bike out for a ride while my bike remains behind. I picture her sitting in this chair, at this computer, getting things all fouled up, and not knowing how to straighten them out, and not having me to call.

If I could imagine now everything she will feel then, she might feel less alone for knowing that I traveled the same road ahead of her, but I know I cannot. Writers from Job to Eugene Sledge were right; God’s favors are not bestowed according to merit. What then, is the good of God?

Fun with having my throat slit

I finally had my appointment with the neurosurgeon. She will be my first woman surgeon (no, my second, come to think of it—I must be having too many surgeries). She is probably in her thirties; probably a lesbian; wore corduroy jeans, cartoon socks, and funky tennis shoes; didn’t blanch when I called her by her first name; and seemed utterly confident of her skills but without any trace of arrogance. She gave me a prescription for ninety Percocets (Percocet being the best thing short of morphine), and I added them to my narcotic’s stash.

“Are you saving up to kill yourself?” Peggy asked. “No. I just remember what it’s like to be in the worse pain of my life, and have no way to control it.” Actually, I had about sixty Vicodins and Percocets on hand (from my last two surgeries) when I was hurting my worst, but I was afraid to take them for fear I might need them even more later. Now that I have six weeks worth of narcotics and a couple of doctors who actually give a rip when I’m in pain, I feel secure.

The CT scan showed a line of grayish vertebra in the midst of which was one glaringly white vertebra. A five year old could have pointed to the problem. I am scheduled for a “Biopsy C5 Vertebral Body—Possible C5 Corpectomy w/Interbody Graft C4-C6 w/Anterior Plate C4-C6” next Monday. What the big words mean is that I am a terribly smart patient for whom small words aren’t adequate. Besides that, they mean that the doctor is going to slit the front of my throat to examine the fifth vertebra at the back of my neck. If my fifth vertebra is malignant, she will cut it out, replace it with part of a dead man’s lower leg bone (either the tibia or the fibula—I didn’t ask), and attach a metal plate to the fourth and sixth vertebras to hold my neck together until the dead man’s bone has a chance to grow. Have you ever heard of anything more fun?! Don’t you wish you were me?! Peggy doesn’t. When I told her that I had rather it be me than her, she agreed.

I thought her answer lacked a certain romantic element, but what we both meant was that I can better deal with being a patient. What I also meant was that I had rather die than to see her die. If she too prefers that I be the one to go, I’m just glad that that’s the way things might play out. She will no doubt spend a lot of lonely nights wondering if hers was the easier path after all, but I think it likely she will at least survive (and eventually flourish), whereas I’m not confident I would.

I questioned that the surgery is a good idea since my fifth cervical vertebra is one of the few body parts that isn’t bothering me, but Peggy and the surgeon considered the operation a no-brainer. Their argument was that I need to know what’s going on in case it needs treatment. That made sense, but it seemed to me that there are also risks in having my throat slit and part of my backbone taken out, and that maybe the information gained won’t be worth those risks. They disagreed, and the surgeon added that she also disagreed with my last neurologist about the tingling in my right arm being unrelated to my spine (although she’ll need a second surgery to fix the problem). I signed on the dotted line—all ten of them—my thought being that Peggy is too freaked out to let things be, and that the orthopedist won’t operate on my shoulders until my back problem is out of the way. This means I’m facing at least four operations, which will bring my lifetime total to fifteen.

I asked the surgeon why, when I can put my hand behind my neck and feel my vertebra, she needed to approach it from the front. She (I’ll call her by a made-up name since I’m going to paraphrase her rather loosely, i.e. lie like a dog about some of the nonmedical stuff) said she can’t take a bone sample from the back because the vertebra is too thin there. “Well, uh, won’t all that stuff in my throat—trachea, esophagus, major arteries, and such—be a problem if you go in from the front?” “Nope, I use spreaders. Put those suckers in there and crank them to the sides, and everything just gets right out of lil’ ole Doc Judy’s way.”

I asked if there was any way she would let me stay awake during all this since I’ve stayed awake during lots of surgeries by now, and REALLY prefer it that way and REALLY do good that way, and REALLY, REALLY hate being knocked out.” “Nope, you’d be gagging like you’ve never gagged before. Altogether too stimulating,”

“Too stimulating? Is that a euphemism for ‘patient jumped from table and ran out door’?”

“Hell yeah, gagging all the way!”

While we spoke, the The Ballbusters and other fem groups were belting out their music in the background. The only song I recognized was a Castraette’s hit that was set to an old Beatles’ tune, “I wanna debone my maaaaaan…. I wanna debone my man.” I noticed a poster on the wall that depicted a big woman on a big Harley. She was heavily tattooed and dressed in black leather. Her bike was parked atop a bookish looking little man in thick spectacles who appeared to be pleading for his life as she snuffed out a cigarette on his throat. The caption read, “Sic Semper Tyrannis.” I looked back at my doctor and saw that she and Peggy were rubbing legs under the table. I pretended not to notice.

“Are there any serious risks to this surgery?” I asked.

“Hell, son, all of life is a risk. The only question is whether you’re man enough to face it.” Then the doctor laughed. Then Peggy laughed. Then they both pointed at me and kept on laughing. “Yes,” I said in a quiet voice that would have been reminiscent of Clint Eastwood if my pitch hadn’t kept changing. “I am man enough, darn it. I really am.”

“Oooooh,” they cooed, and laughed some more.

Peggy and I went from the doctor’s office to the anesthesiologist’s office to get my pre-op out of the way. I picked up a New Yorker magazine and looked at the cartoons. In one cartoon, two women were sitting on a couch talking. One of the women was holding a photo of her late husband. “No, he didn’t suffer,” she said. “And that is my only regret.” Peggy, predictably, didn’t get it.

This is a good time for having a morbid sense of humor. I just hope I can laugh all the way to the hospital at 5:15 Monday morning. Peggy doesn’t find humor in sickness and death, so things are harder for her. I’ve wondered if she might actually hold up better if I were falling apart. I tell her that I’m fine and that nothing she says will scare me, and this gives her permission to tell me some things she might not otherwise say. Whether sharing terror dissolves it or makes it grow, I can’t say.

I’ll try to get the house cleaned and the yard work done. I’ll also make out a will and a medical power of attorney. I don’t know that I need a will since everything is in both our names anyway; and the surgeon said I don’t need a medical power of attorney. But it doesn’t take much imagination to picture myself lying brain dead in a Catholic hospital, and Peggy having to go to court to get my feeding tube disconnected. I keep asking myself whether it’s still true that I don’t fear death. Yes, it is still true. I fear suffering, and I grieve in advance to think about Peggy being alone, but death holds no terrors for me.

Still no appointment

I still have not seen the neurosurgeon. First, her staff lost my referral, then she cancelled three appointments at the last minute due to emergencies. These cancellations are understandable but frustrating since Peggy took off from work to go with me, and I even left a funeral early to get to one of them. Also, the doctor’s nurse told me to stop taking my anti-inflammatory a week ago in preparation for an early biopsy, and this has caused my pain to grow exponentially, yet she will not schedule an operating room until I see the doctor.

On the good side (maybe) I’m told that my next appointment (tomorrow at 8:00 a.m.) is a”100% sure thing.” Right. Sort of like when I call a doctor’s office and the receptionist says, “I’m going to put you on hold for just a moment.” Now, I would define “just a moment” as longer than a second but shorter than a minute. People who work in doctors’ offices have a different definition. They define “just a moment” as an indefinite quantity of future time that would normally transpire before the caller dies—assuming that the caller is not too sick or old, and his call is not disconnected. This means that a “100% sure thing” could mean, as I define it, a 0.4% sure thing, or a 50% sure thing, or anything else.

I took the following summary to the neurosurgeon's office today along with some other forms:

A Summation of Why I Have Come

I have impingement problems in both shoulders. When the pain got so bad that I could not carry on a normal life, I went to Shapiro for surgery. Shapiro said that a tingling/burning sensation in my right arm was not connected to the impingement problem, and that I would need to see a neurologist before he operated. I waited six weeks for an appointment with Balm who said Shapiro was probably wrong, but that he would test me anyway. He did an EMG and a nerve conduction study, and ordered an MRI and a CT scan. These tests proved Balm right, but they also showed a “shiny fifth cervical vertebra.” Balm suggested that I see my internist, Jacobsen, to determine whether I have metastatic cancer that, he speculated, might have originated in my prostate.

I told Balm that the pain in my shoulders (and to a lesser extent in my back) often leaves me just short of tears, but that despite my fervent and repeated requests for adequate pain relief, Shapiro had not seen fit to prescribe anything stronger than 25mg Elavil (of which he said I could take a whole tablet if I needed it—the first night I took two tablets and still got little if any relief). Balm gave me a prescription for hydrocodone, but it makes me itch so bad that I rarely take it. I partially control the pain by: taking Piroxicam each morning and Elavil, Ambien, and Requip at bedtime; sleeping with a heating pad under my back and a pillow under each shoulder; and not doing any physical activity that involves my arms if I can avoid it (I even keep my hands in my pockets when I walk, and I ride my bike with only my left hand on the handlebars as much as possible).

I also went to an acupuncturist for eight visits. I wasn’t sure he helped (or if it was my constant experimentation with other measures that accounted for the pain reduction), but I observed that he stuck me in the same places each time, so I ordered some needles and have been doing almost daily acupuncture on myself. I’m not sure what combination of measures I can attribute it to, but I have reduced the pain sufficiently that I am no longer obsessed with suicide as a means to escape it.

Jacobsen suggested that I see you. Bridget lost my referral, and three appointments on three consecutive days were cancelled by your office at the last minute, so it has taken me three weeks to get in. Last week, Debbie suggested that I go off the Piroxicam in order to obtain a speedier biopsy. I did this, and the shoulder pain and the pain from an arthritic left knee is getting worse.

Lorna, in Jacobsen’s office, told me that two other doctors said a biopsy was too dangerous, but that you are willing to do one. I don’t know why they thought as they did or why you think as you do. No one who I have spoken with knows any more than I do.