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.

My poor opinion of Christianity

I came across the blog of a young man who is studying Catholic theology and challenged his assertion that suffering is invariably a lesson from God. He replied with a polite but paternal note in which he did nothing more than reiterate the point I had challenged. I wrote a second time asking him to explain what he thought God’s lesson was for starving infants and abandoned dogs. He then accused me of showing contempt for God (or at least his version of God) and for himself (I had no intention of being disrespectful), and suggested that I not visit his blog again. I apologized for having caused offense, not because my challenge was unreasonable but because I expressed it bluntly.

I respect the right of the blogger to hold any opinion about anything as long as that opinion doesn’t cause him to infringe upon the rights of others. But what is his rationale in demanding that I show respect for the opinions themselves, and did he believe that he was doing as much for me? I daresay he would argue that my opinion was sacrilegious, and that reciprocity was therefore impossible.

I was not taken aback so much by his unwillingness to address my questions as by the vehemence of his response. His blog was about love and peace, and I assumed from this that he was loving and peaceful. This tendency to take people at face value is a failing in someone of my age and experience.

…I have a great many objections to Christianity, regardless of the version offered. I have made several attempts to be a Christian, it is true, but this was not because I assented to Christianity intellectually, but because I wanted the comfort it promised; and it was this attempt to squash my intellect that eventually defeated me. I might as well have tried to squash a coiled spring or a slab of foam rubber, objects that have infinitely more patience and tenacity than I.

Even so, I might have overcome my intellectual reservations if only I had seen Christianity delivering what it promised. Namely, if Christians have the guidance of the Holy Spirit, why isn’t this evident? I have known people who were strong and people who were weak; people who were honest and people who were crooks; but I have never observed that Christians were stronger or had more integrity than non-Christians. If anything, I’ve wondered if they were as good; my speculation being that Christianity might appear most attractive to those who are weakest of character.

The “defense” of Christians about why the guidance of the Holy Spirit doesn’t enable them to stand out as moral examples runs along the lines of, “Christians aren’t perfect, just forgiven,” but this doesn’t address the argument; it ignores it. In regard to the really bad things that Christians have done (inquisitions, religious wars, frightening children, burning heretics, etc.) I have heard Christians offer that atheists are just as bad (Communists being the example given). That Christians would attempt to mitigate the behavior of their fellow Christians by pointing out that it is no worse than that of the very people who they consider the lowest of the fallen strikes me as extraordinary. It also misses the point. Atheists don’t claim the benefit of divine guidance, and there is a vast difference in Christians persecuting people in the name of God versus atheists doing it in the name of Communism. I have yet to hear of a single atheist killing anyone in the name of atheism.

I don’t believe that the failures of Christians to live up to their own teachings is entirely their fault, and this leads me to another serious flaw of Christianity, namely that it is not grounded in reality. I’ll give an example. Jesus commanded those who are robbed of the jackets to offer the robbers their coats also. Does anyone live this way? Should anyone live this way? I see signs in church parking lots that read, “Unauthorized Vehicles Will Be Towed At Owner’s Expense.” What if, instead of towing cars, churches followed the spirit of Jesus and gave two parking spaces to everyone who took one parking space? What if, instead of calling the police when their houses were being burglarized, Christians helped the burglars carry heavy objects and gave them more than they had intended to steal?

There is practically no end to my objections to Christianity, and I don’t recall that even one of them has been answered in a manner that made the least bit of sense to me, this despite my very great desire to embrace the Christian faith. Yet, I have known many people who, though not Christians, expressed a great admiration for Jesus. Have they actually read all of the things he supposedly said? The part about abandoning your family and following him, or selling everything you own to buy a sword, or hiding the truth from those whom God doesn’t want to save?

There is the Jesus of the Bible and there is the Jesus of popular culture, and the Jesus of popular culture is kindly, patient, tolerant, peaceful, and forgiving. The Jesus of the Bible might have taught some of these virtues on occasion, but he was inconsistent in his teachings. He was also bad-tempered, humorless, prone to sweeping generalizations, intolerant of sects other than his own, disrespectful of his mother, had an adolescent zeal for offending his elders unnecessarily, insisted on teaching in parables even though his own disciples couldn’t figure out what he meant, and often acted contrary to what he professed to believe. Of course, most Christians seem to hold that Jesus meant for very little of what he said to be taken at face value. Well, okay then—I’ll leave it to them to interpret the words of their verbally challenged deity. Unfortunately, they can’t agree among themselves as to what he intended.

Out of mind, out of body; out of body, out of mind

I see my new neurosurgeon tomorrow to hear her thoughts about a spinal biopsy. Peggy is sick with worry and can’t understand why I am not. I tell her that my biggest fear is pain; my second fear is disability; and my last fear is death. I still have hope that I can stop the pain. The other two fears may or may not be realized, but pain is the only one I don’t think I can handle, yet it is the only one I am having to handle.

Permanent and unalterable pain would, in all likelihood, lead me to suicide. I should imagine that Peggy could better survive my demise if it wasn’t voluntary, and that is one reason I fear a fatal illness less than I fear pain. In the face of unalterable pain, a fatal illness would be a godsend. In the absence of a fatal illness, I might feel it necessary to continue my life on Peggy’s account alone.

I just hope I have time to finish editing my writing. When everything has been added to my blog, I will create a synopsis. Whether I am gifted at recording my life on paper, I cannot say, but there it is, the exemplary and the shameful, the trivial and the profound, the sane and the crazy, the boring and the entertaining; a quarter of a century worth. Very little will be left out; it will just be cleaned up for the sake of readability. I entertain little hope that anyone will be interested in it, and I can’t even think of a compelling reason why they should be, but such considerations are of no great importance; only the work is important.

If I had the wherewithal, I would seek publication, but that would mean taking topically oriented portions of what I have written out of journal form and putting them into chapter form. Next would come working with others to make my work saleable. I do not say that this is a low end, it is just not an end that I can see my way to accomplishing.

I’m tripping today, and I haven’t even taken any mind-altering medications since last night. I don’t altogether like the feeling because it’s too near the outer edge of control. I’ve been here before, and I know that all I have to do is ride it out as if I were a surfer…. I feel tired, cold; every thought and every fact seems equally and unbearably profound; every object looks equally distant. It is a very old feeling; it puts me in touch with my childhood, as if what I feel now, I felt then, and what I felt then, I feel now; as if time hasn’t moved, as if my whole life is happening at once, and I’m observing my life through eyes that aren’t entirely my own.

I think my present state comes from being too inwardly focused. I’m not taking on projects, not seeing people, not exercising, and not leaving home except to run errands; my mind is feeding on itself. I am tempted to stop surfing, to lie back and see what will happen, how bad it will get, and then to see what lies beyond how bad it will get. When we come to an intersection, are we really free to choose which way we go?

Do-It-Yourself acupuncture, fun with pain, fun with drugs for pain

I went to the acupuncturist eight times. Seven of those times, I saw no improvement. After the eighth, my shoulders felt better for a few days, and I could only think of two possible explanations. One was the acupuncture; the other was that the pain had gotten so bad that I had stopped doing almost everything. To test the first theory, I went to the acupuncturist one last time and asked him to do whatever he had done on the previous visit. This treatment didn’t work the same magic, but I took careful note of where he stuck me, ordered a box of needles, and have been doing acupuncture on myself. There seems to be a slight improvement, but since I am experimenting with other self-help approaches, I can’t pin it down (ha) to the acupuncture.

One of the humorous aspects of pain itself and the narcotics that relieve it is that you become a complete idiot. Yesterday, I got out the dogs’ collars, leashes, and poop bags; put on my windbreaker and bicycle helmet; and went for a walk. Pretend you are taking an IQ test, and you are asked to identify something that doesn’t belong in the above sentence. Right! But I didn’t find the correct word or words until I was halfway down the street, at which point I sheepishly returned home and put on my cap. Also yesterday, I was frustrated by not being able to find my keys. After a few minutes of furious looking, I discovered them……in my hand.

An updated account of how things have played out

When I last updated, the diagnostic neurologist had referred me back to the internist for cancer screening. The internist ordered a vertebral biopsy, said it could take a week to get it done, and told me to expect a phone call from whomever he referred me to. Unknown to me, he faxed referrals to three specialists (he apparently had doubts about which one was appropriate). When I received no call, I called the internist’s office repeatedly—or rather the internist’s office answer machine—to ask what was happening. I finally learned that two of the specialists had declared the procedure too risky (I have no idea why despite my best efforts to find out) and that the third specialist was insisting upon an open incision instead of a needle biopsy. I got the name of the third specialist and called her office. I was told that no referral had been received, so I commenced more calls to internist’s office. His referral clerk finally called back, and insisted that the referral was faxed a week ago. And so it goes, and so I wait… A procedure that was supposed to take one week won’t be done in two.

My dealings with doctors and their employees have led me to be more surprised when things go well than when they get fouled up, so I am far from childlike naiveté. Even so, having to struggle continually just to get people to do what they said would do, what they were hired to do, is awfully wearying. Clearly, if I had not badgered the internist’s office, I would not have heard from anyone. I have no doubt but what sick people die because they get lost in the shuffle and lack the strength to fight their way to the top. My problem is that the longer I have to put up with all this bullshit, the more obnoxious I am tempted to become. I can imagine calling twelve times a day to rub myself in their faces for being such fuckups. I don’t do this only because I know it would hurt rather than help.

My father had a spinal tumor removed in 1955. The surgeon told him that there was a greater chance of death than of recovery, but Dad said he didn’t really care as long as he escaped the pain. For months he had only been able to sleep standing in a corner propped on crutches. I always thought of my father as emotionally weak. Now I am in awe that he was able to keep from blowing his head off. Doctors then were even more reluctant to provide adequate pain relief than doctors today.

I took three different pills last night to knock myself out, yet I awakened five hours later in pain. I took a Vicodin when I got up, and wish I had something stronger, although I hate taking any narcotic because of the side effects and because the more I anesthetize myself now, the harder it will be to anesthetize myself after I start having surgeries. I had to get the Vicodin from the diagnostic neurologist—my surgical orthopedist just told me to go home and apply ice. I wish for him that he will someday feel the pain that I am experiencing.

It is hard for me to accept that I am but one patient among scores to my many doctors, and that most of them really and truly don’t give a rip. If they see me at all, it is only as whatever body part they specialize in. I can call their offices all I please, but I rarely get a real person, and when I do finally hear back, the caller is often someone who knows less than I did before I called. Then when I go in for an appointment, the typical doctor is in a hurry to get rid of me. I don’t take this personally. That’s the problem; the system is impersonal. No one means to behave badly; they’re just not rewarded for behaving well. The more patients, the more money and the more praise from their employers. The average doctor visit lasts six minutes.

Even so, I can’t say that all this has been a totally negative experience because it has given me a greater appreciation of my strength. Even with Lexapro, there are days when I am obsessed with suicide, and find a strange comfort in fantasizing how I would accomplish it (my latest plan is to make a paste of my medications and wash it down with cognac). Yet I know I won’t harm myself, at least not until I’m pronounced hopeless, and maybe not then. My reasoning used to be that it would hurt Peggy too much. That is still true, but I have also learned that good can—and already has—come from my suffering, and that it would be a mistake to block that good.

I used to be too willing to blame other people for their pain, to think that all they needed to do was to exercise, or think positively, or clean up their diet, or stop taking so many prescription drugs. Now, I see that it’s not the Army Rangers who are the toughest of the tough but the people whose lives might appear to be a complete mess. City buses invariably contain old people with walkers and bent up people in wheelchairs. With all my pain and disability, I look at them, and I don’t know how they do it. Their bodies are shriveled, yet their spirits keep moving. I can still walk, and see, and hear, and use my arms for something other than pushing a knob on a motorized wheelchair. No one has to shave me or change my underwear or cook my food. What I can no longer do is a loss, but what I can do is a miracle. There are times when several minutes pass during which I don’t think about how much I hurt, and I am more grateful for those minutes than I used to be for my entire life. There truly can be redemption in suffering, not that I would wish for another moment of it if I had the power to choose.