Maybe cancer; maybe not


My prostate antigen level in April of 2011 was two. This April, it was 4.5. This week, it’s 4.9. I’ve had a few biopsies over the years—including one of my lower abdomen and another of a neck vertebrae for which the surgeon had to go through the front of my throat—but I never believed I had cancer. This time, I think I do.

I would hate like hell to leave Peggy alone. I would also hate to leave my "bloggy friends" as Nollyposh used to call them (she was one of four bloggy friends I lost to cancer). A lot of people will find out that they're dying just in the time it takes to write this post, and that won't be long because I'm still doing my experiment with minimal editing.

A few years ago my 56-year-old neighbor, John, drove three hours, climbed a 10,358-foot peak (3,157 meters), and drove home. I saw him that evening, and he complained of fatigue. I laughed, but he said that, no, this fatigue was different. He died a year later of prostate cancer. (I can hardly hold out to clean house anymore, which is one of the reasons I think I have cancer). John died next door, but I never went to see him because I didn’t really know him, and I wasn’t sure I would be welcome. He was also a lawyer, and I hate lawyers. I now wish I had gone because it would have been the right thing to do. I also like being around people who are dying.

Doc Martin is phobic of blood; Nurse Peggy is phobic of cancer. She's so scared that she’s been having to struggle to keep from hyperventilating. 

I've often wondered whether it would be easier to have a terminal illness than to live in pain. One advantage of living in pain is that I have a sense of time stretching before me, and that gives me reason to hope that I will either beat the pain eventually or at least learn to tolerate it better.

My odds of survival are probably good even if I have cancer, but there’s still that 3% chance that I’ll be dead within five years. After ten years, the chance is 30%, and it keeps going downhill from there. As cancer goes, only lung cancer kills more Americans than prostate cancer.

I won’t be getting any more teeth crowned until I have a prognosis. The damn dentist crowned one in January, and that alone drained my insurance for the rest of the year. He wanted to crown another one in April, but I said no, so he squirted some gook into the hole in the hope that it will last until January 2013.

Helter Skelter captures my mood today just as it captured the mood of America in the late ‘60s. To represent the early ‘60s, I chose Johnny Angel. How, in a single decade, do you go from songs about cars and teenage romance to songs about drugs, death, defeat, confusion, alienation, insanity, and injustice?

I like things that mess with my head, so I like Helter Skelter. The good thing about music is that I can turn it off if it gets too intense. With real life, I have to divide myself into two parts. One part thinks, feels, and acts; the other part dispassionately observes the part that thinks, feels, and acts. Pain can become so consuming that it draws my observer part into it, and that's when I go to pieces. I assume that this can also be true of cancer. I really must learn to do better, and I think I'm succeeding. I've felt stronger than ever since my meltdown on Sunday.


P.S. Shelley Fabares is a goddess.




Today's barely edited


I didn’t feel old until a year or two ago. I attribute this sudden oncoming of antiquity to the pain. Except for misdiagnosed sleep apnea (which cost me two needless surgeries) and the pain of the last six years, I’ve been healthy as an adult. In fact, I used to marvel at my good health because I would — sometimes for months—feel such sadness that I was just sure it would eventually eat its way from my heart and into my flesh, causing me to sicken and die. The fact that I stayed in such good shape was curious to me.

Then came the sleep apnea, and I grew increasingly desperate over a period of five years until it was diagnosed and treated. Three years later came the pain. For the longest, I thought I would beat it. I told myself that my species, despite its many faults, is very clever in various ways, and that medicine has been one of the major benefactors of the explosion of knowledge that has occurred during my lifetime alone (I would have died had the sleep apnea hit 15 years earlier). How hard, therefore, could it be to eliminate my little old pain? It might be impossible as it turns out.

For much of my life, I held doctors on such an intellectual pedestal that if a doctor couldn’t cure me of something, I would assume that he wasn't trying hard enough—maybe he hadn’t run the right test or asked the right question. I later met doctors whom I trusted as good men as well as good doctors, and when they told me there was nothing they could do, I believed them. Even with this recent pain and the urging of one reader to see a pain specialist, I have no thought of seeing a doctor. For what? Pills? I’ve got pills, and if there were other pills, I would know about them. Dosages? If I want to dicker with those, I have more confidence in the Internet than I do in any given doctor (I've discovered two serious errors in my prescriptions by looking them up on the Internet). Tests? Diagnoses? Surgeries? I could probably get several more of each if I wanted to start from scratch with new doctors, but I don't.

Maybe my "barely edited" experiment is connected with my need to transcend the pain because while I've lost all hope of escaping it completely, I haven't lost faith in my ability to someday live well despite it. I think at least one of you might have worried about me euthanizing myself after my last post, but I wouldn’t do that. I thought a lot about it for a long time, and I must have decided against it because I don’t dwell on it much. Not that I was ever really close to suicide; it’s just that I considered it a reasonable and reassuring option. If you hurt as I do, and you killed yourself, I could respect you for it if you only had yourself to think of (If you were married, I would consider it necessary for you to get your spouse's blessing to kill yourself it unless your spouse opposed suicide on principal). But even if you were alone or had your family’s blessing, I would suggest that you hang in there. You’ll be dead-meat in a few years anyway and you'll stay dead for all eternity, so why not stick around? You might do some good, you might have a few laughs, and you can always decide to off yourself later.  

The photo is of me, from yesterday. It did me good to go to the woods.

A second experiment with posting in the moment




Given how much I bitch and whine, Peggy might not realize that I try to spare her from the worst of what I feel, but I can’t do it today. I had a horrendous night last night that followed a day spent trying to recover from another bad night. Dilaudid didn’t help, so I lay awake for hours and I am just about through the roof right now. I smoked some pot an hour ago hoping it would help, but unlike yesterday, I’m experiencing something similar to a bad acid trip. I feel like I’m caught in a nightmare, and I don’t have the strength to find peace in the storm. I work everyday to stay calm and hopeful, but when I’m really hurting, really exhausted, and really without any means to control the pain without knocking myself out, I just can’t find it in me. I’m unfit for anything but to shake and cry, yet, there’s something here for me. I know it, but I can't find it even after years of looking.... I've heard enough Mary Wells and going to listen to some Goulet. Before marijuana, I didn't care about music. Now, it's one of my main comforts, it and plants.

An experiment in not editing—much anyway


I’ve been thinking about posting more and editing less because it’s making me crazy that I can’t stop editing. Even after I post something, I continue editing for days. So, here goes.

It’s a good day to live in Eugene (the photo is one that I took of some area scenery). The six months of drizzle are at an end, and the drought hasn’t arrived. It’s our second 80-degree day (27 C), 80 being 15 degrees above my ideal, but still pleasant enough.

I did yard work yesterday and suffered a lot for it last night. In fact, I’m such a wreck today that I’m avoiding unnecessary chores. I had intended to at least march in a pro-marijuana parade, but my knees were hurting too bad. I did bike to the library and got some books about war (I just finished—and can recommend—American Sniper, The Autobiography of the Most Lethal Sniper in U.S. Military History). I also bought some eucalyptus incense—which I’m now enjoying—and biked around the downtown area looking at the freaks. I like freaks—if they’re pleasant freaks. I also enjoy homeless men. Years ago, I considered them disgusting, so one day I passed a panhandler without speaking to him although he said something to me. He got up and followed me, demanding in a loud voice that I at least show him the respect of acknowledging his existence. I walked on in silence. I now shed tears when I remember that man. I could have done good, and I chose evil.

My right shoulder is hurting me a lot today, but I do my damnedest to avoid drugs in the daytime with the exception of marijuana, and I’m already so strung-out from the drugs that I took last night that I don’t dare use that. I literally feel like I’m losing my mind, and marijuana could make it worse. I’m also so tired that I'm sick, and marijuana could make that worse too. Then again, it could make me hyper. It's not a predictable drug, at least in my case.

Kurt and Jackie are coming for supper. Their cat was killed the day before yesterday, and although we rarely see them more than a few times a year, I thought it good to invite them to supper for the second week in a row. They accepted with an enthusiasm that made me sad for them.

I have two other recommendations for you. The first is an interview entitled A Portrait of Maurice Sendak. It's the heaviest thing I've ever seen on film, yet it's only 39 minutes long. He died a few days after I watched it, and I've seen it a few more times since then. My last recommendation is Memoirs of an Addicted Brain: a Neuroscientist Examines His Former Life on Drugs. The author reminded me a friend from 30 years ago named Larry. One day Larry and were smoking pot with another man when the other man handed Larry a handful of pills and asked if Larry knew what any of them were. Larry had no idea, but he swallowed them down without even asking. After that, I thought of him as a starving dog.


So, I took a hit, and I'm happy to report that I feel a little better. The pain is still with me, but it doesn't hurt like it did.

Drugs and addiction


It’s a rare night that I can sleep without drugs. For pain, I take Cymbalta, Dilaudid, oxycodone, and Neurontin. For sleep, I have Ambien, Dalmane, Restoril, and marijuana. All of these drugs have overlapping benefits and they work best in combination, but with the exception of marijuana I seldom mix them because of the increased risk of side effects. Also, except for marijuana, I never take any of them during the daytime. The one exception was when I took oxycodone two weeks ago for that anxiety attack caused by the Cipro.

My most effective painkiller/sleep aide, is Neurontin. Oddly enough, considering how strong it is, Neurontin doesn’t make me high unless missing doorways and bouncing off walls counts as being high. To avoid tolerance problems, I save it for when I’m desperate. For example, I hardly slept three nights ago, and when that happens, I go for broke the next night, so I took three doses (900 mgs) of Neurontin at once and spent the next several hours flat on my back. One of the ways I minimize pain is by turning over a lot, so when the pain finally awakened me, I was hurting pretty bad, but the drug still had enough kick (about 16 hours worth altogether) that I was eventually able to get back to sleep. 

Last night, I was so tired that I did my best to sleep without drugs, but that only lasted for five hours before I took a 10 mg Ambien, which is my short-acting favorite. Taking so many drugs means that I'm pretty much permanently snookered. I'll give some examples of the annoyances this causes. One. When I got up this morning, I couldn’t find my sunglasses, so I finally left the house without them. When I got home, there they were, right where they were supposed to be, which was the one place I didn’t look. Two. I’ve already looked once today, and I still can't remember if this is 2011 or 2012.

I’m going to address addiction since some of you expressed concern about it following my last post. I was surprised that one person was especially worried about marijuana because I consider marijuana to be the least harmful drug I take in terms of tolerance, dependency, side-effects, or—in the case of narcotics—addictiveness. It strikes me as exceedingly odd that the least scary drug I use is the only one that's illegal. Marijuana can be habituating, of course, but then so can jogging or eating ice cream. Narcotics are a whole other animal because they bring about permanent changes in the brain and hellacious withdrawal symptoms. As I write, I haven’t used marijuana for five days (I sometimes get tired of being high) without the least problem. If I used narcotics as often as I normally use marijuana, I would be under medical care for withdrawal.

To further compare narcotics and marijuana; I prefer marijuana because it causes me to think about the world in deeper and more interesting ways, ways that are so profoundly true for me that they seem to be coming from the core of my being. The drug rarely leads me to euphoria while it not uncommonly makes me anxious, dysphoric, and sometimes downright miserable. I often go for months during which I start most days with marijuana and coffee and then continue to use marijuana until bedtime. I do this because I like the mental stimulation but also because pot works far better as a sleep aide if I use it all day. Sleep is my major challenge not just because of the pain but because I have four separate sleep disorders—insomnia, sleep apnea, nocturnal myoclonus, and nocturnal bruxism.

Narcotics differ from marijuana in that they do induce euphoria, although I find them boring in terms of thought stimulation (who needs to think when he’s euphoric?). I’ll use an analogy to describe how I envision narcotic addiction. Imagine that you’re rafting down a slow and muddy river. The hot air is stifling and the scenery boring. You too are stifled and bored, and you wish with all your heart that you could feel like you were getting somewhere, but your entire life has come to seem like a failure no matter what you do. Then you come to a whirlpool (narcotics), but you don’t realize it's a whirlpool because it's so wide. You’re just pleased to find that you’re moving, although you can’t really remember why you ever wanted to be someplace else. The breeze in your face is cooling, and the same scenery that bored you a few minutes ago is now fascinatingly beautiful. Happiness seems so simple and natural, and sadness so twisted and complex that it's hard to imagine that you were ever unhappy. By the time you see Death at your side, you might be too far gone to turn back. I’m not talking about me, but neither do I remain cocksure that addiction only happens to other people, people inferior to myself. When you're desperate for a way out, even a bad option can look better than no option.

My narcotic mainstay is oxycodone (when it comes combined with acetaminophen, it’s called Percocet) because I’ve been approved for a years’ worth without even having to go back to my internist. I limit myself to 30 mgs at a time (the starting dose is 5-10) three or four times a week. Unfortunately, I feel less euphoric and get less pain relief from thirty than I once got from ten, but I'm afraid that if I take a higher dosage even once, I’ll be tempted to do it again. Why did I set 30 as my limit when my prescription calls for 10-20? Because I was taking 30 when I got scared, and since I was handling that okay—except for the hellacious constipation—I stayed with it. Narcotics are so insidious that even though 30 no longer gets me high for more than a half hour, I crave it on my narcotic-free nights. On the nights I do take it, I have trouble waiting until bedtime to do so because the rush initially makes me too happy to fall asleep, so I want to be up doing fun things. There's nothing like high on narcotics and marijuana and then baking crackers while watching a movie. Yep, that's right, I can carry on real well even while real high, so well in fact that even Peggy can't even tell if I've had anything.

I sometimes imagine that narcotics are talking to me. They say they’re my friends, and that there’s really no reason for me to be in pain when all I have to do to feel better is to take a few milligrams extra. They assure me that, just as most people can safely relax in the evening with a few drinks, so can I relax with a few narcotics. Besides, don’t I deserve a little euphoria? Hell, I’m in pain; my brain—the one I once took pride in—is a turnip; I can’t do many of the things that I used to find meaning in; I look like shit, having gone from 180 pounds of muscle to 160 pounds of skin, bones, and a little round belly; and, worse yet, I have no hope of ever escaping the pain or ever regaining my strength and intelligence. As a matter of fact, the whole goddamn rest of my goddamn life looks pretty fucking bleak, and even after years of pain, I still don’t have a clue how to handle that. Narcotics tell me that they’ll handle it for me and make me deliriously happy.

The words that I say to myself are a bit different… "Why can’t I handle this better? I know people who are worse off but appear to be doing fine. Why can’t I be like them and cut through adversity like a knife through warm butter? And why, when I spent years trying to stay healthy and more years trying to regain my health, am I like this while people who are older than I and never gave a thought to diet and exercise are doing fine?"

So far, I haven’t been tempted to take a higher dose of narcotics or to take them during the daytime (except for two weeks ago when Cipro took me to the doorstep of panic). I’m helped in this by reminding myself of what George Peppard (see photo) said about drinking: “You have problems, you think drink helps, then you have two problems.” I never knew him, and he has been in his grave for years, but I sometimes imagine him beside me, looking the way he looked toward the end of his life when his arrogance was gone. I don't only want to be strong for myself and for Peggy; I also want to be strong to honor his memory because every little bit of inspiration helps, and George Peppard's tortured existence and eventual triumph has certainly inspired me.

The bareass truth is that I need drugs to sleep, mostly because I’m in too much pain to sleep without them, but also because I’ve taken them for so many years that normal sleep is all but impossible. Yet, drugs are robbing me of myself almost as much as the pain is, not because I’m addicted but because when you take mind-altering drugs everyday, you start to lose sight of who you are. I’m desperate to give up drugs as a way of life, but I’m desperate for sleep too, and I can’t have it both ways. You might look at my situation and think you could do better, and I hope you could because you might have to someday, but where I am is where I am despite the years I’ve put into trying to either get well or get strong. 

I just came off a five-month break from even trying to help myself—well, except for diet, drugs, writing, physical therapy exercises, and buying potted plants. When I started getting scared about how much I was looking forward to narcotics, which wasn't too long ago, I signed up for a Qigong class. My classmates are mostly old ladies, and I'm having trouble keeping up with them. I would have already quit the class, but where do you go after Qigong? It would be like dropping out of kindergarten. 

As the saying goes, “You either get tough or die.” I’m not all that tough, but then I’m not dead or on a psych ward either... I grieve my life. Although, for years now, my experience of it has hardly been in the league of a walking death, it seriously sucks. My chief support has come from Peggy, my doctors, and you. Two bloggers who were dying (Renee and Nollyposh) gave me a generous portion of their time and compassion, and that still helps even though they're gone. I wouldn't be surprised but what many a life has been saved by a single act of kindness on the part of someone who had no idea of the significance of what they were doing.