You need it the most when you have it the least

I go to my neurologist and say that my back still hurts like hell 73-days after I crushed my first lumbar vertebra, and I ask him what I should do. He proposes a kind of operation called a kyphoplasty in which a balloon is stuffed inside the vertebra, inflated with air, and filled with quick-hardening cement. Now, I know that the AAOS (American Association of Orthopedic Surgeons) doesn’t much like kyphoplasty, but I also know it’s commonly done because there aren’t a lot of great alternatives, and because it’s a low-risk moneymaker that doesn’t require a high degree of doctorly skill and intelligence. Still, it is surgery, and no surgery is so minor but what it can’t mess you up.

So, I ask him if maybe he could he hold off on the surgery for awhile and send me to physical therapy first, and he says that, yeah, that might work, and he gives me a PT referral. I then ask him whether an AAOS-recommended drug named Calcitonin might help, and he says it might, and he gives me a prescription. He no doubt realizes by now that I’ve been reading about my problem on the Internet, and a lot of doctors hate it when that happens because it’s ever so much easier and more profitable when sick people keep their mouths shut and do as they’re told.

Next, I ask him what he thinks of radio frequency ablation as a less invasive alternative to kyphoplasty, that is if it turns out that PT and Calcitonin aren’t enough to get me back on track, and as soon as I say this, he groans and puts his head in his hands. I’ve never seen a doctor do that before, so I just sit there looking at him and wondering what his next trick will be. Not a very good one as it turns out, because all he does is to change the subject. I don’t remember what he changed it to, because I’m thinking, wait just a damn minute here, there’s a question on the floor, so I interrupt him as gently as I can (doctors tend to be childish and fragile) by saying, “From your reaction, I assume you consider RFA too absurd to discuss, but before I consent to surgery, I very much want to investigate less invasive options, and from what little I know of RFA, it sounds promising, plus it’s a whole lot less scary than having my vertebra stuffed with a cement that might escape and wreak havoc with my spinal cord and surrounding vertebra.” He says, “I have two colleagues who perform the procedure, and I will refer you to one of them if you would like.” You will note that, if I hadn’t made some suggestions, only one treatment would have been proposed, and it wouldn’t have been the preferred one. He showed no empathy, volunteered little information, and became impatient with questions. In other words, he behaved like a typical doctor except for the groaning and head-holding part, idiosyncrasies that brought his grade for the visit down to a D+.

If you’re new to being a patient, you need to know that you can get better treatment if you take an active role in researching every aspect of your problem. Here’s why:

1) You will better understand what your doctor is talking about, and you will know what questions to ask in response.

2) Your doctor will take you more seriously even if he resents your unwillingness to treat him like a demigod.

3) Doctors sometimes fall behind on the latest research, so it's possible that they might learn from you.

4) Doctors like to stay within the confines of a limited number of well-beaten paths that they can walk without thinking, and this means that they tend to employ a surprisingly limited number of drugs, tests, and procedures.

5) Doctors tend to know little about treatments that fall outside their area of expertise.

6) You’ll be less likely to submit to a dangerous and expensive procedure that offers little if any promise of helping you.

7) If you run into an authoritarian doctor who takes the attitude that, “I AM A DOCTOR. How DARE you learn on your own; how DARE you question anything I say; and how DARE you suggest other treatment possibilities,” it will enable you to find a good doctor sooner.

8) You will feel strong, smart, and in control.

9) You will gain interesting knowledge that you can use to your own benefit and the benefit of others.

On the downside, it’s emotionally difficult to assume what verges on an adversarial relationship with your doctor, but, sad to say, the alternative is oftentimes to allow your doctor to run all over you by treating you like you’re worthless and stupid. Obviously, not all doctors are callous, arrogant, unsupportive assholes, but based upon my experiences with scores—at least—of them, I can but observe that most are. Yet, you need them, so the trick is to find a way to relate to them that is as beneficial to you as possible. I’ve learned that this means taking an active role in your own care even if they don’t like it, and being willing to find another doctor if they dislike it enough that it’s impossible to work with them. If this should happen, it won’t be your fault. You will simply be doing what your doctor gets rich from charging hurting people for, which is to see that they get the care they need.

A relative named Patsy broke her back at the same time I broke mine, only her break seems to have left her in considerably more pain. Her doctor prescribed Vicodin, a weak painkiller, that would have been adequate even if it had worked, which it didn’t due to the fact that it made her too sick to take it. So, what does her doctor do when she tells him she can’t take her medicine? Nothing. Despite the fact that he had myriad painkillers to choose from, he left her in pain for no fucking reason. If he had been my doctor, I could have proposed a half-dozen alternatives off the top of my head, but because Patsy knows nothing about pain control, or medicine in general, or how doctors tend to behave, she went home assuming that this man whom she had gone to for help when she was frightened and in pain, had done his best to help her and was out of options. This is what happens to people who are ignorant or passive, and Patsy was both. I can find a lot of reasons to mistrust and despise doctors and very few to regard them positively. So, yet again, I will tell you that you have to look out for yourself. Ironically, you need strength the most when you have it the least.

Yaaaahoooo!!!!

Life is darkly funny, and I do love black humor, so at least there’s that. For example, I have a patio that’s covered by a large canopy (a canopy is basically a thousand dollar tarp), and when it snows, I have to rake the snow off the canopy while standing on a ladder part of the time and on the roof of the house part of the time. When I stand on the house part I'm within inches of a high voltage line, but I’ve never been one to avoid looking death in the eye while standing on an icy roof, especially where the welfare of a canopy is concerned. Since it rarely snows more than an inch or two here, and during some winters not even that much, I don’t give my canopy much thought, but as I write this, it's covered by six inches of snow, and snow is continuing to fall. I wouldn’t be surprised if the framing itself collapses, and I find that darkly funny. Here are some other things that strike me undesirable, yet funny enough once I've had a snootful of thing or another.

It rarely gets below 25-degrees F. here even in the dead of winter, so I don't give frozen pipes much thought either, but the daytime highs lately have been near freezing, and the forecast low for the next two nights is 8-degrees. This means that I need to get my crawlspace vent covers down from the attic, and install them over the foundation vents, but my odds of doing it aren't looking good.

...The toilet is running. I can hear it cutting on-and-off as I write, but I can do nothing to fix it... 

Last night, Peggy moved 30 cans of house paint, 20 gallons of juice, and four cases of soymilk from the garage to the laundry room to keep it from freezing. The laundry room is also crowded with dirty laundry, but neither Peggy nor the Queen of England know how to run a washing machine, and I'm still having trouble negotiating the step between the laundry room and kitchen (the one I had so much trouble crawling up last Saturday).

Peggy was so worried yesterday that she called the neurologist that I’m supposed to see on Monday. Here, in my part of America anyway, it’s extremely unusual for a doctor to talk to a patient unless said patient is in the doctor’s office where he or she can be billed $30 a minute, so when I said “she called the neurologist,” what I meant was that she called the neurologist’s staff. However, the switchboard operator mistakenly transferred her to the CEO, so Peggy found herself talking to a man who didn’t say who he was but who sounded very surprised to hear from her. He repeatedly tried to transfer her back to the switchboard, but every time he hung-up, his own phone would ring again, and Peggy would still be on it, so he finally told her who he was and asked how he could help. She described my situation in some detail, and ended by saying, “My husband is in a lot of pain, and he needs to talk to someone before Monday about how to: manage the pain, avoid the constant threat of his entire back cramping, and protect his back from further injury,” to which the CEO responded, “All our patients are in a lot of pain, but I’ll see what I can do.” A few hours later, we got a personal call from the doctor I’m supposed to see on Monday. I was out having an MRI when he called, so he left a message saying he would call back this morning, but he didn't.

I was both astounded and pissy to hear the voice of a genuine doctor coming from my own little answering machine. Unless you’re a VIP (which I had apparently become because of a misdirected phone call), doctors give almost nothing of themselves unless it’s a billable event, and talking to a patient on the phone is not a billable event. If a patient isn’t okay with this, he must be reminded—in this case by a CEO who would not himself have to wait for a billable event—that being ignored by one’s doctor is unavoidable, and that it is unreasonable for one person to complain about it when so many other people are content to suffer in silence. Sure, plumbers and car mechanics might talk to a person off-the-clock, but medical doctors are too well-paid and highly regarded to waste time doing anything for free, that is unless it’s for a VIP, which I now am due to an inept switchboard operator who is probably out looking for a new job.

My internist of twenty years won’t talk on the phone either, but he will write a prescription, and I just love that about him. My most recent prescription was for Fentanyl, a painkiller 100 times stronger than morphine. My 50-microgram dose of Fentanyl is the equivalent of 100 milligrams of oxycodone (another drug for severe pain) per day. I never take more than 30 mgs of oxycodone a day, but I take it all at once, so I think I should survive the Fentanyl, but I’m not completely free of concern because Fentanyl has a nasty reputation for killing people, even wonderful people like myself who deserve to live long lives and who go to great pains to take their dangerous drugs exactly as prescribed. Giving Fentanyl to a person in pain is like giving a nuclear bomb to Slim Pickens, and all I have to say about that is thank the Good Lord for nuclear bombs because I had much rather be incinerated instantly by a nuke than to be hacked to death slowly by a sword. 

I would love to take a nap, but the neurologist did say that he would call again, plus my internist’s staff is supposed to let me know if the thing on my left kidney is a cyst, a hematoma, or a tumor, and I’m just nosey enough to want to find out. 

As I was finishing this up, somebody named Corey called from the internist’s office called to tell me that the growth on my left kidney is "a very large cyst that might need to come out." I asked if it could be malignant, but he didn’t know. I asked what caused it, but he didn’t know. I asked what would happen if I didn't want to cut it out, but he didn’t know. That’s all I know, that and the fact that it's not a tumor.

Peggy is making snow ice cream (snow plus condensed milk), so I'm outta here.

Love,

Gone to hell in a handbasket

When I last wrote, I reported that the three CAT-scans I had on Monday had determined that I have a badly crushed L1 vertebra (L1 is the red vertebra in the illustration), and “something” on my left kidney. That something could be a hematoma from the fall, a tumor, or a cyst. To determine which, my internist ordered an MRI, which is scheduled for tomorrow, Thursday. Today, I’m to have a prerequisite blood test to verify that my kidneys have recovered from the injection of the contrast medium on Monday, the test being necessary because more contrast medium is to be injected tomorrow.

The internist’s office called yesterday morning (Tuesday) to let me know they had faxed a referral to a surgical neurologist. I immediately called the neurologist’s office to make an appointment, only to have someone named Toni tell me in her chipper voice that the referral hadn’t arrived. After a second referral was faxed, I called Toni again, but had to leave a message on her voicemail. She didn’t call back, despite being told that my situation was urgent. I called her again this morning. She said she still hadn’t received a referral. so I gave her the name of the person who had faxed the TWO referrals, the exact times the referrals were faxed, and the name of the person in her office who had taken the referrals from the fax machine and delivered them to her; at which point Toni said, in her, by now, maddeningly chipper voice, “Oh, here they are,” and made my appointment.

I think that what was going on for Toni was that she wanted me to be a good boy and quietly wait my turn in line, no matter how long it took, but, as I told her: “I’m in terrible pain; I’m getting almost no sleep; I can’t even do light housework; the only way I can take the edge off is to combine Fentanyl and oxycodone, drugs that are dangerous when combined; all this plus I look pregnant because I’ve gone from having two bowel movements a day before the accident to having none since the accident, suggesting the likelihood of abdominal nerve damage. I really need to be seen.” This was way more information than Toni wanted to hear, and some of the chipperness left her voice.

If you want to know what’s it like to feel powerless, be in desperate need of medical care but not actually bleeding to death. Of course, there are good office staff, and I try to have fun with them. I was talking to one just this morning. When she called me to say, “I have the answers to all of your questions,” I responded, “Okay, what is the meaning of life?” Earlier this week, another had asked, “Do you have other issues?” and I said, “Oh, but do I ever have other issues, but I don’t think you can help me with them.” Maybe she was kidding me back when she said, “Well, I’ll certainly do my best.”

I take a fall

I kicked a ladder out from under myself yesterday and fell six feet, landing flat on my back. Luckily, I didn’t land on the ladder, or my tools, or the heat-pump, or the border of the patio. I couldn’t believe it when I felt the ladder going. Fifty years of using ladders without an accident, and now this!? I was pruning an apple tree at the time, and tried to grab the branches as I fell. My upper body was surrounded by them (which was probably why I lost touch with the fact that the ladder was leaning), and I was fairly confident that I would succeed, but I didn’t. I then realized that I was irretrievably falling, and that, given my height, it was going to hurt, and then it hurt. The jarring was incredible and the pain instant, but my first problem was that I couldn’t breathe.

When I finally caught my breath, I made sure that my parts would move, and then I lay there wondering if my neighbors had seen me fall, and hoping they hadn’t because I am NOT the kind of idiot who falls off ladders. The day was turning to night, and the air was getting cold, and all that I had on were coveralls, so I wanted to get indoors as soon as possible. I began the journey on hands and knees as gyrating strings of lightning filled my vision. I didn’t think I had hit my head, so I assumed the pain was the cause of the visual effects. I made it to the back door, but couldn’t lift my hand to open it, so I had to lay on my side to reach for the doorknob. I got back onto hands and knees and crawled across the laundry room in the direction of the kitchen. When I came to the single eight-inch step between the two, I couldn’t raise my arms high enough to cross it, so I returned to my side and tried to inch my way over. I got my head stuck in the corner under the open door (it's bottom being at same height as the kitchen floor), and lay there or a long time shivering (the laundry room being unheated and me being on the floor), hurting, wondering how to get out from under the door, and hoping I could make it into the kitchen before Peggy came home in about an hour. I hoped this partly to spare her the shock of finding me, but also because shivering on a hard floor was making the pain worse. 

It being news time, I thought that the TV might distract me from how much I hurt, but I would have to get up that step to get to it. I reflected on the fact that most people would be praying about now, and that I would too if I had the least idea it would help. Finally, my body began to move as if it had a plan of its own, so I let it take over. After numerous attempts, it made its way into the kitchen (I don't know how). It didn’t even try to get back onto hands and knees, but inched along on its side, its goal being a chair in the adjacent den. We passed the TV remote, so I turned it on, but immediately lost the remote, and had to settle for a movie about a little girl and her pig. As my body crawled along, I wondered how it was ever going to into that chair. As it turned out, it couldn’t. I was disappointed, but had to give it an A for effort.

It was past time for Brewsky’s supper, but he was so weirded-out by my behavior that he didn’t even cry. When Peggy came home, my body and I were on the floor in the dark, me wondering where the remote was, it trembling, and both of us watching a little girl sneak a pig into her school desk. Peggy had been shopping, so, not wanting to upset her, I asked about her trip, and she showed me her purchases. Since I never lie on the floor in the dark watching what I calljunk TV, she finally asked if I was okay. I told her what had happened, and asked her to find my glasses and gather my tools. She came back in saying that she couldn’t find them all. I suggested that she look in the tree. 

That chore being done, she brought me a 1’x’3 plywood platform that I had made for some long ago project and then saved in the thought that I would probably need it it again for one thing or another. It being four inches tall, I thought that maybe I could use it to get myself high enough to transfer into the chair. With much help from Peggy, I succeeded. I then had her bring me a jar to pee in. I also had to shit, so, again with much help from her and with the aid of a walker that we had bought when she hurt her own back (and then kept in case we needed it again), she got me onto the pot. I sat there thinking about how glad I was that this wasn’t our first date. I couldn’t push to get the shit out, so, giving up on that project, I had her help me to bed. I lay there for two hours, high on oxycodone and listening to relaxing music from the '50s, but the pain never let up, and ice packs, which usually help pain a lot, didn't help any. I had her move me back into the den where I became nauseous, dizzy, and shivered while sweat poured off my body. I thought I might faint, but the sickness passed, and Peggy brought me my supper. We watched two episodes of Cheyenne (1955). It was either that or Peter Gunn (1958) because both DVD sets had just arrived, and I was eager to watch them.

She kept bringing me ice packs, but they weren’t helping, so I asked for a heating pad, and it did help some. After supper, Cheyenne, one Aleve, and a whopping dose of Neurontin, she helped me back to bed where I more or less passed out from the Neurontin. Without it, I don’t know if I would have slept at all. I only had to awaken her once for my pee jar during the night, so that was a relief. Now, I’m up, and here I sit, dependent upon her for everything.

Tomorrow (Monday), I will see if I can get in to see my primary care doc. He’s good about same day appointments (a rarity in America), so I’m confident that I can either see him or someone in his practice, and maybe get a steroid shot. Today, I’ll try to get some movement back. I can use my arms, and bend my knees and back, but that’s pretty much all I can do without the pain stopping me. My biggest worry is kidney damage because that’s where the pain is, but, so far, I haven’t passed any blood. I thought of going to Urgent Care, but would need more help than Peggy could provide without endangering herself, and I sure as hell don’t want to pay for an ambulance or ask friends to help if I don’t have to. Mostly, I just don’t want to go.

Later: I came back and found a video for Peter Gunn. When the show comes on, the red sparkly-looking things in the photo pulse in harmony with the music, making for what is surely the most intense beginning for any show that was ever on TV. I would even call the program surreal, film noire at its best. The above album made the Top Ten. The style of jazz was popular in L.A. in the '50s and is called West Coast Cool.

Update on Monday. The doctor thinks I might have broken one or more vertebra. He ordered stat blood work, stat x-rays, and a stat CAT scan. These tests took four hours because the CAT scan people wouldn’t do their job until the blood work people had done theirs. Their concern was that my kidneys be okay because I had to drink one kind of contrast and have another kind injected through an IV, and both are excreted through the kidneys. Now, I’m home waiting for test results…

My internist’s physician’s assistant called as I was writing the last sentence (nice things happen to nice people, which is why he called at such a fortuitous time). The x-rays and CAT scan showed that my L1 vertebra is crushed to half its normal size (which is a lot), and that I have either a cyst, a tumor, or a hematoma on my left kidney. He ordered an MRI on both the vertebra and the kidney, and said he would try to rush it through, but since it requires insurance pre—approval, it might not happen today. He also referred me to a surgical neurologist to be evaluated for (what else?) surgery. As for the kidney problem, I’ll be seeing a nephrologist if it’s a tumor. Otherwise, it will just require a periodic re-evaluation.

As for how I’m doing, I can’t get even reasonably comfortable in any position, but the longer I stay in a position, the more uncomfortable I become, so I spend a lot of time switching between sitting and standing, being still and stretching, standing and walking, etc. It takes a long time and a lot of painful effort to switch positions in bed, and it’s a much bigger hassle to get out of bed, especially after a few hours, and then when I’m out, I need help to walk until I get limbered up. And, of course, there are my usual pain problems which were being helped by QiGong, something that I can no longer do. As for the good news, at least I can walk now. It’s not pretty because I’m stiff, guarded, tentative, and hunched over, but at least it’s walking. Presently, I’m in slightly less pain because I took a stiff dose of oxycodone (the narcotic that’s found in Percocet) an hour ago.

I’m bummed about the test results, but don’t know enough to know how bummed to be, and am good at not letting my fears run away with me. As for Peggy, she’s in tears and nearly frantic, but she has the ability to bounce back from negative feelings with amazing rapidity. It’s also true that her reaction is partly determined by my own, so if I stay centered, it helps her to stay centered. Fortunately, years of experience (including three cancer scares) have made it easier for me to stay centered, at least in regard to medical problems.