the neurologist calls for another test, thoughts about dying

I had my MRI night before last. The neurologist’s office called at 8:00 this morning to say that he had ordered a CAT scan, and that the CAT scan people would call me. The CAT scan people called at 9:00, and said to get there ASAP, that they would work me in. This made me wonder what the dickens the MRI showed—or else didn’t show.

Based upon her terror of cancer (as opposed to her experience as a nurse) and her subsequent tendency to diagnose it at the drop of a hat, Peggy thinks I have bone cancer. She would not have shared this particular bit of information if we hadn’t been fighting at the time. Fortunately, Peggy’s fears are seldom my fears, so they don’t affect me except to make me sad that she has them.

Even if her direst prediction is right, death scares me mostly because she would have to carry on without me. Maybe I would be scared for me too if I really believed I was dying, but I think I would mostly worry about her and feel guilty that I was abandoning her. This is not because she couldn’t make it on her own (and even find satisfactions that she would not otherwise have known), but because it would be hard for her to do so. Our marriage has been through a lot during these 37 years, but it has generally gotten better since I stopped having affairs, and I would even go so far as to say that it’s pretty good now. This means that another thing that would make it hard to die would be knowing that I didn’t try as hard as I should have to deserve Peggy.

Doctor-Go-Round, Prescription Cornucopia, Chronic Pain, the Cause of Depression

My week. Monday: surgeon. Tuesday: neurologist, acupuncturist, and hand rehabilitation therapist. Wednesday: MRI. Thursday: acupuncturist and dentist.

My daily prescription regimen: Lexapro (for depression), Elavil (for sleep), Ambien (for sleep), Requip (for sleep), Vicodin (for pain), Feldene (for inflammation).

Yesterday, the surgeon declined to operate on either shoulder because he thinks I have a vertebral problem that will require surgery first. This is why I saw the neurologist today. The neurologist ordered an MRI and a nerve conduction study. I will have the first done tomorrow night and the second next Wednesday.

The hand rehab therapist blamed the failure of my wrist to heal from carpel tunnel surgery (last April) on the impingement in my right shoulder and the unnatural way I hold my body in order to avoid pain.

My acupuncturist suggested that I sleep with several pillows under my head and my chest so as to suspend my shoulders above the mattress, and that advice represents the most I got for my $550. That very night, I slept ten hours. The trouble was that the chest pillows hurt my ribs more with each passing night. I substituted various combinations of blankets, foam wedges, and air mattresses, and I even tried compromising so that some weight remained on my shoulders, but to no avail. Since my back long ago became too painful to sleep on—even in a recliner—I am in an unenviable situation.

I can no longer bike, and I can only walk without shoulder pain if I keep my hands in my pockets. When that doesn’t control the pain, I fold my arms. When that fails, I cross them atop my shoulders. Housework is a nightmare, and I don’t know how I’m going to rake the leaves, yet inactivity and feeling like I am not pulling my share of the load is even more difficult.

Yet, I cannot say that living with pain has been a total loss. I haven’t gained in compassion—as one might expect—but I have gained in a more immediate understanding of how flimsy and temporal our lives are. Only the very young are without wounds or ailments, and oftentimes not even them. Yet, despite this—and even because of it—beauty and meaning are possible. As I write, I am listening to Loreena McKennitt. How sweet her voice is, and how such grandeur as my race can achieve sustains me through the long nights. Pain reduces a person to elementals.

The Lexapro has been such a boon that I can almost imagine it being worth the thousand dollar a year price tag. Without it, I don’t know how I would get through this….

Few people presume to tell those with cancer or a bad heart that their problem will go away if they count their blessings or stop taking life so seriously; but I have received much such advice over the years, and I would compare it to telling a person who is drowning that he needs to swim.

Years ago, I was in an informal support group, and was surprised to learn that a great many of my fellows actually did believe that all manner of mental and physical ailments were entirely a matter of troubled thinking, so that all a paraplegic, for example, needed to do to walk was to envision himself as being able to walk. Such a belief is like religious faith in that it is impossible to argue against it because its holders—who tend to be young and healthy—see it as coming from a higher plane than mere evidence or logic and therefore unassailable by mere evidence or logic. It is also like much religious faith—and much advice to the depressed—in that it is smug and insulting. If I can think like a “normal” person simply by taking a pill that alters my brain chemistry (while a “normal” person would not be affected by the same pill), this surely implies that my brain chemistry might have been the cause of my depression.

I’m aware that everyone from the excessively timid to the grossest overeaters wants to be thought of as having a disease, partly because it takes away the moral stigma and the onus of personal responsibility. But what if they’re right? I know I couldn’t be a drunk if I tried just as I couldn’t weigh 400 pounds if I tried. Besides, the fact that such problems might not be entirely a matter of choice doesn’t diminish the responsibility of the person who is suffering from them anymore than the fact that my shoulder problems were not a matter of choice diminishes my responsibility for dealing with them. Even if a person should deny his own responsibility all the way to the grave, he would be no less dead.

Thoughts on chronic pain, modern medicine, alternative medicine, acupuncture, surgery, and anti-depressants

I started Lexapro a week ago. My primary care doc gave me a sample back in March, but I hate taking that kind of thing except as a last resort. On Tuesday, I thought that, well, it’s last resort time, so I looked Lexapro up on the net and learned that it’s for depression and anxiety in the worse-off of the worst-off. I’m not altogether catatonic, but close enough.

I can feel it raising that old familiar floor beneath my emotions that desipramine, Prozac, Wellbutrin, and Zoloft erected, only maybe higher and stronger. “And, lo, the Lord, Lowell’s God, looked upon that floor and saw that it was very good, and he sayeth unto Lowell, ‘Lo, Lowell, this floor, it is very good, but let us maketh it better by raising it higher, even until it is above thy head,’ and Lowell answereth the Lord, Lowell’s God, by saying, ‘Lo, Lord, the same floor cannot be both beneath my feet where it will doeth me good and above my head where it won’t, and the Lord, Lowell’s God, answereth back unto Lowell, ‘Lo, Lowell, all things are possible for the Lord, Lowell’s God,’ to which Lowell sayeth, ‘Oh.’ And the floor was raiseth, and Lowell fell out from under it.”

For most of my life, I had but one doc whom I rarely saw. This year, I’ve had one sleep specialist, three surgeons, two anesthesiologists, countless radiologists, two neurologists, one dermatologist, and one primary care physician. Today, I added a hand specialist (to help break down scar tissue from my carpal tunnel surgery) and an acupuncturist (for my back and shoulders) to my entourage of nurses, aides, phlebotomists, x-ray techs, massage therapists, physical therapists, and lab techs. One of the dominant labels that I now place upon myself is that of patient.

Medical doctors, are, by and large, less than pleasant people. They’re harried, impatient, unreachable except during paid visits, think of me as an assemblage of parts, don’t recognize me when they see me, and have offices that are brown and gray with nothing of solace or beauty except maybe a single print that looks to have been added as an afterthought.

My primary care doctor is somewhat the exception. His office is the worst of all, but he encourages me to talk about any and everything, and he listens good. He is also my only doctor who is not young enough to be my child. In fact, he is my exact age—fifty-nine. He’s a little more wrinkled than I, perhaps, and a lot more stooped. He also shuffles when he walks and has a tremor. You might say that he looks like hell. You might say that he looks like he should be my patient rather than I his, but maybe I flatter myself. In any event, I leave his office with the suspicion that I am better off with my problems than I would be with his.

Alternative practitioners are the opposite of regular doctors. Maybe it’s because they lack the scientific cachet, or maybe it’s because their patients are mostly people who are disenchanted with regular doctors, or maybe it’s just that they all happen to be supremely sensitive spiritual types. Whatever the reason, they are given to hemp clothing and to decorating their offices with Buddhas, waterfalls, potted plants, pastel paints, and rice paper prints—with meditative music in the background.

I go away from doctors’ offices disappointed that my “healer” had no interest in me except for a single joint or organ. When the acupuncturist I saw today tried to draw me out by saying, “You must be really frustrated by all this pain,” I immediately lowered the drawbridge and sent the archers to the castle walls. “What the the hell are you trying to do here?! I thought. “I’ve only known you for fifteen minutes. I’m not going to open up to you.” A while later he said he needed to leave the room for a moment, and I wondered, “Why are you leaving the room? Am I that hard to deal with? Don’t you like me?” It’s not that I’m impossible to please (no, not I), just that I’m ambivalent.

The acupuncturist is my last hope before surgery, so I read all I could about him and about acupuncture in general before I saw him. Almost every scientific study concludes: “Couldn’t come to a firm conclusion. More research needed.” Great. So, I questioned today’s acupuncturist as closely as I could without being obnoxious, and I couldn’t be sure, but I thought that maybe he didn’t like it. The truth is that nobody likes to be challenged. Even if they say they do, they don’t. Even if I try to be really, really tactful, they don’t.

He stuck needles into my lower arms, abdomen and feet. The pain in my right shoulder went from a two to a six (eight being about what it would take to bring tears). He noticed my discomfort, and put a pillow under my upper arm. “Does that help?” “Yes, I feel better now.” “Are you sure?” “Well, maybe you could lower it a little.” He did, and then stood looking at me in earnest silence. Next he put a pillow under my shoulder. “That’s even better,” I said. Then he put a second pillow under my head. “That’s better than when I came in!” I exuded. Night after night, I toss and turn in pain, yet it never occurred to me to use an extra pillow.

I hadn’t paid for moxibustion, but he did moxibustion. I hadn’t paid for magnets, but he put one on my neck and one on my right shoulder. Then he left me while these things did their magic, His potted ficus looked down upon me sympathetically, as if it too were a healer. But will magnets and needles and burning mugwort help? I divide treatments into things that make sense and will probably work, things that don’t make sense but might work anyway, and things that seem too stupid to even consider; and I’m open to the first two categories. Nothing Tom did seemed stupid.

The thing about medical doctors that bothers me most is that they are a lot more interested in treating symptoms than treating causes. In fact, they are often completely uninterested in causes. Maybe this is because they are expected to see several patients per hour. Or maybe it’s because symptoms are obvious, quantifiable, and approachable. Until three years ago, I was in pretty good shape. Then I had knee debridement so that I could hike twelve miles over steep terrain without a knee ache. Thanks to that very simple and very routine surgery, I can no longer walk more than a few blocks without pain, and I’ve gone downhill like a pig on a greased slide. If I were a doctor, I would be curious about that, but even my primary doc just kind of throws up his hands and grabs for his prescription pad. “Depressed about your declining health? How about a nice sample of Lexapro? It’ll do you good. Besides, Forest Pharmaceuticals often buys lunch for my staff and me—not that I would let it influence me any.”

Just as carpenters see every problem as requiring a hammer, surgeons call for a scalpel, so if you don’t want surgery, don’t go to a surgeon. That shoulder surgery (subacromial decompression, which translates into “take the pressure off the area beneath a bone called the acromium”) I cancelled two weeks ago has a four-month recovery period. In other words, the surgeon would injure me so severely that I would need four months, not to recover from the ailment, but from the treatment. Does that sound like anything YOU would jump into? Sure it’s a simple surgery (for the doctor), and sure it’s routine, but then my knee surgery was even more simple and more routine; and because of how IT turned out, I never lose sight of the fact that, if the worst happens, it’s not the doctor who will be screwed. What’s more, the doctor might not even care. Mine certainly didn’t want to be reminded of his failure.

Maybe my primary doctor is right about the brain. Maybe it’s all (or at least mostly) physiological—what goes on in there. It sure looks that way. A stroke, or a head injury, or a pill, can dramatically change a person. I’ve seen it from the inside. When I’m on an anti-depressant, all the dark thoughts that I had are still lurking in the shadows, and they still seem more real somehow than the positive thoughts, yet they have been robbed of their power. It’s as if I’m standing behind a bulletproof window, and can see the darkness coming at me, only it can’t penetrate the glass. Pills don’t make me into a flaming optimist; they just make me indifferent to sadness.

Unfortunately, it’s not just sad thoughts that bounce off the glass, it’s also my ability to be deeply touched by love, art, music, nature, innocence, heroism, and compassion. Poignancy becomes just another word in the dictionary that I can understand but can’t personally relate to. In short, to deaden what I hate about myself, the drug must also deaden what I love most, the two being somehow intertwined. That is why I don’t take the damn stuff unless I’m so screwed up that I become fixated on suicide. In the current circumstances, it’s not that I want to die; it’s that I want the pain to die. Unless you’ve been awakened time after time, night after night, by one of the worst pains you’ve ever had, you won’t know what I’m talking about. When the acupuncturist asked me to describe it, I said that it’s like someone stuck ice picks deep into both shoulders. If the pain were any worse, I would howl like a dog.

I’m reading a mediation book (break through pain by Shinzen Young) about the spiritual growth that is possible with chronic pain. He says that the pain is not the BIG problem; it’s the terror, the outrage, the refusal to accept the pain that’s the BIG problem. Yes, I can see that. Heads or tails. Suicide or saintliness.

I can’t hike because of my knee. Now I can’t bike because of my shoulders. I’ve never much cared for meditation, but at least meditation is something I CAN do. Maybe, for now, I need to accept that life is not NORMAL, and might not be normal for a long, long time, and that, just maybe, something good can come from that.

Sleeplessness

It’s a chilly Labor Day, too soon to start the furnace, but too cold to be comfortable without it. I am wearing both a sweater and a light jacket.

Two weeks ago, I postponed shoulder surgery, partly because I was afraid it either wouldn’t help or leave me worse off, partly because I dreaded the long recuperation (for the first ten weeks, my arm wouldn’t even be able to support its own weight), and partly because I wanted to give physical therapy another month or two. At the time, I showed little progress with therapy, and, to tell the truth, couldn’t actually say but what it was hurting more than it was helping. Since then, I’ve deteriorated greatly—a deep massage plus my reluctance to forego exercise seems to have triggered my decline—and now I don’t dare exercise at all.

Shoulder pain keeps me from sleeping on either side, and now my back is hurting me as much as my shoulders. Since my sleep apnea mask doesn’t allow me to sleep on my stomach, I’m challenged to get any sleep at all. An Ambien, plus an anti-inflammatory, plus Tylenol, plus heating pads and ice packs, enable me to sleep, at most, for a few hours before I awaken in pain. They also make me nauseous. Even if I went ahead and had the surgery, I would feel worse for weeks if not months before I felt better—and that on one side only—and I don’t see how I could bear it.

Of such problems as I have had, sleeplessness is the worst. To be so tired yet be unable to rest engenders a feeling very near panic. Just the thought of lying down fills me with dread although I can scarcely stay awake.

I suppose I will try a chiropractor and maybe an acupuncturist, although I can find little evidence to support them. But then the evidence for surgery is mixed too. My particular surgeon boasts of a 96% success rate (how would he know?), but the average seems to be more on the order of 80%.

I wish to god that I knew what to do. I am finding it hard to direct my actions from moment to moment much less to make major decisions.

Bears, Mountain Lions, and Surgery

The best times to go to the woods are in late spring and early summer when the most flowers are in bloom, and in mid to late summer when the berries are ripe. On our last trip, we dined on raspberries, dewberries, blackberries, thimbleberries, red huckleberries, salal, and even the strange tasting Oregon grape. My favorite, the lush orange salmonberry, was all gone, and I will grieve its loss until next summer. When we go to the woods again (we venture out once a week), we will take berrying buckets and stock our freezer.

The coast range has far more berries than the Cascades, and far more bears to show for it. On our last bike trip before Peggy’s mother died, an adult bear crossed the road 300 feet in front of us. As I grew abreast of the spot, a movement caught my eye, and I spied its cub frantically climbing a small tree no more than ten feet away. “Oh, look at the little baby bear,” I cooed to Peggy—who had not seen it. She made no response, and when I looked back at where she had been, she was disappearing down the mountain in a cloud of dust, and I was unable to catch up with her for quite some time. When I finally did, I said simply, “You were going for help, I suppose,” knowing full well that Peggy had considered it a case of every man, woman, and dog for itself—her being powerfully afraid of bears. My only terror is of mountain lions, and I worry mostly about our dogs because the question in my mind is not whether a mountain lion would eat them, but why wouldn’t a mountain lion eat them.

Peggy took a spill last weekend, and came away with some bruises and road burns. Logging roads are often paved with poorly packed rocks of uneven size, so it is not unusual for our wheels to be thrown several inches to the side. No one can bike in such places without an occasional wreck.

I am scheduled for rotator cuff surgery toward the end of the month. I can hardly sleep for fear, only fear is too weak a word. I try to calm myself by reciting poetry, but I can scarcely focus long enough to get through a single verse. My days are less terrible than my nights only because I can at least distract myself with work, even if I am so panicked that I make one stupid mistake after another. One might think that with all the surgeries I’ve had, I would handle myself better, but the reverse is true. Even when I have confidence in my surgeon, I have no confidence in my luck. It’s not that I consider myself unlucky, but that so much can go wrong, and so much of what can go wrong can never be made right. How many times have I wished I could have screamed “Don’t do it!” at myself as I walked to the hospital for knee surgery, even that short walk being longer than most of the ones I have made in the years since. My intention was to prolong my hiking years, not to end them altogether. Now I can but bike, and I won’t even be able to do that for four months after my next surgery. I won’t be allowed to so much as lift my arm for six weeks, and nothing more than my arm for another month.

Some might interpret my terror as a premonition, but I have little to no faith in premonitions. What I do have faith in is my ability to made prudent decisions, but no matter how prudent I try to be, there is always uncertainty, and there is always the possibility that I will learn something after the fact that would have led me to choose differently. Oddly enough, the more fearful I become, the harder it would be for me to back out of surgery in the absence of a really good reason to do so.

I have spent hours combing the Internet for alternative treatments, but the trouble with alternative treatments is that they are seldom supported by hard data. I can find study after study about surgery, but no studies whatsoever about Rolfing, Tragering, acupuncture, chiropractic, and so forth. If they could but offer me some reason to believe in them (other than their own authority and the anonymous testimonials of their patients), I would jump at the chance. Yes, medical doctors sometimes kill their patients whereas homoeopathists never do; and, yes, medical doctors are glorified parts’ technicians whereas alternative therapists treat the whole person. But I see no other option. I can have surgery now, or I can have surgery later. Or—as I’m told—I can have surgery now, and still have surgery later since an enlarged tendon can’t be reduced. The most that a surgeon can do is to remove some of the risk factors that might lead to a tear.