I storm my surgeon's office, thoughts on being aggressive but not too aggressive

The surgeon said on Wednesday that he would order an ultrasound if the swelling didn’t go down by Monday. Today—Monday—I was at his office at 8:30, because I didn’t want to wait until the phones were turned on at 9:00, be switched to someone’s voicemail, receive a callback at noon, and an ultrasound appointment later in the week.

The staff made much ado about my presence, and insisted that I be examined, first by a nurse, then by a physician’s assistant. I told everyone that I didn’t want to be examined, I just wanted an order for an ultrasound, yet I submitted in the hope that being seen today meant that I could cancel my appointment on Wednesday.

I finally did get an ultrasound appointment for this afternoon. I’m supposed to drink 40 ounces of water one hour in advance and hold it for the half hour exam. Now, does that seem feasible to you? I have every anticipation of (a) running from the exam room or (b) pissing on the table. There was a time when I wasn’t embarrassed by my bodily functions because I thought I was so good-looking. Now I’m not embarrassed because I’m too homely to give a rip. I’m just glad someone else will have to clean up the mess.

Life would be easier if getting medical care didn’t require that I assert myself so much. If I’m too aggressive, the staff balks at my every request, but if I wait passively for my request to be honored, odds are that it won’t be. I suspect there are people who stay home and die simply because they get tired of jumping through the hoops.

Medicine is like the legal system in that it habitually deals with people who are in a horrible predicament, yet it expects those people to behave as if everything was business as usual. This is why I said it won’t do to advocate for oneself too assertively: you are not helped on the basis of need but of influence and likeability—if that. The “if that” arises from the fact that patients are tiny, anonymous, plentiful, and highly expendable cogs in an immense profit machine.

Thirty years ago, I had but one doctor, and his wife was his only assistant. My current surgeon works in an office with ten other surgeons, and I would not be the least surprised but what there are more than thirty clerks, receptionists, schedulers, nurses, nurse assistants, physician assistants, and who knows who else. Most of my doctors have so many examining rooms and so many twisting corridors, that I get lost on my way out. And these doctors don’t even own their practices; they are on the payroll at Peace Health, the same outfit that employs Peggy along with thousands upon thousands of other people, and which expects its doctors to see a LOT of patients. The more patients, the more insurance claims; the more insurance claims, the more money. Tell me, does this sound like an organization that encourages caring, no matter how many crucifixes it glues to the walls?

The surgeon came by my room beforehand on the day of my surgery. I was in the bathroom at the time, and Walt was sitting fully dressed in a chair by the bed. Although Walt weighs twice what I do, and although the surgeon had seen me five days earlier, and had made a big deal about how my thinness would affect the procedure; he still called mistook Walt for me. Our healthcare system is like a conveyer belt, and conveyer belts only work when everyone moves in a straight line.

hell-week

I had hell-week until Wednesday night. I had been in significant pain since Saturday when a lump the size of several inches of garden hose appeared from the top of my incision to my groin. Starting Sunday, I spent most of my time flat on my back—that being the only position in which I could find even a little relief. Monday, I called the doctor’s office only to learn that he would be in surgery all day. His nurse assured me that my symptoms were to be expected since I had lymph nodes removed during the hernia surgery.

I wanted to believe her, but I couldn’t understand why the pain and swelling was getting worse instead of better, and why the swollen area resembled an intestine. No, I thought, it can’t be intestine because the internal repair mesh is holding that in place. Tuesday night, it hit me that the mesh must have broken free, and allowed the intestine to float upwards. I was positively distraught, not so much because I would have to go through another surgery with a less rosy outlook, but because Peggy would miss her trip to France. By the time she got home from work, I was in tears, insisting that she go no matter what, and promising that I would have friends care for me.

Peggy was puzzled. “You never wanted me to go to France in the first place, and now you’re insisting that I go at such a bad time!?” I said that for me to miss her and worry about her while she away was entirely different from me wishing to be the reason she stayed home. She said she would decide after we saw the doctor.

Along with my anxiety over her trip, I was also mad at myself for not insisting that I be seen on Monday. I stand up for myself well except when I’m sick, and then even mundane tasks sometimes overwhelm me. For example, changing my e-mail address this week was a major coup given my condition, and actually facing real people in any situation required so much heroism that I wondered how I ever pulled it off.

Nonetheless, I was unable to think of anything Tuesday night and Wednesday except my appointment with the surgeon on Wednesday afternoon. That I had to do, and I had to do it well, meaning that I had to be prepared to battle for getting the second surgery done immediately, because I knew that Peggy would not leave if it wasn’t behind me. I therefore took a written copy of everything I wanted to tell the doctor. I made the list partly because he is a terrible listener, but also because of my problem with remembering things when I am in pain. Although Peggy would serve as my backup, I knew that I could stand up for myself if only I could marshal my resources.

The surgeon read my list, examined my belly, said he thought the swelling was fluid and that my pain was caused by going off the Vicodin two days after surgery: “Pain left untreated feeds on itself.” He also said that the possibility of a mess failure was “too insignificant to consider.” As for my list, he admitted that it had grabbed his attention, but he said he was sorry that I felt the need to grab his attention. I was sorry too.

The Percocet helped so much that I couldn’t believe how much it helped; and the surgeon’s assurance that my problem wasn’t dire was an even bigger help.

Now, I’m happy, and Peggy’s happy. Peggy is also excited about her trip actually coming off, having passed through, first, the cancer scare, and then the failed mesh scare. I am also resigned to the necessity of letting Peggy do things for me until her departure. Oh, but how much easier it is to be the helper than the helpee, because the latter feels humiliating despite my knowing that we all have to endure it at times. The greater my need for help, the greater my resistance to accepting it. This, I’m sure, is my real weakness, for I would never make the same judgment against others that I so readily make against myself.

the surgical holding area, the strength of old ladies, I make my incision swell, my father's stubbornness

Rain all day, as usual. Last Sunday—the day before my surgery—we had five inches of snow—a phenomenal amount for the valley floor—and I spent the day clearing it from the patio roof.

After I checked into the hospital, I was taken to a room that held six patients. Curtains offered visual privacy, but there was no verbal privacy. My surgeon was running two and a half hours late, so I saw other patients come and go. One was 88, and had suffered for nine years from infection following a knee replacement. He was there to have the joint removed and the space packed with antibiotics for three months. Then would come another replacement and, if that didn’t work, a fusion. He was sharp of mind and did his own talking. We were taken to the surgical holding area together, and, as he was wheeled into the O.R., I kept thinking, “You are screwed, dude; you are not going to survive this at your age.” Then I realized that he was probably screwed anyway.

Every day, I watch Mrs. Fredericks walk by. She is 90, lives three houses down, and lost her husband to diabetes last year. A few months later, her daughter and a couple of her grandkids were killed in a plane crash. She stays in her house until she “can’t stand the loneliness anymore,” and then she walks. I ponder the pain she suffers with every faltering step, and I wonder how much longer she can holdout. We denigrate men by comparing them to old ladies (“an old lady could run faster…lift more, etc…than you”), but old ladies usually live to see their once strong men dropped into holes.

I feel sicker now than I did the day after surgery, and I finally figured out why. It’s because I am forced to sleep on my back, and my sleep apnea is worse that way. Last night, I had dream after dream in which I was trapped in dark, dank, putrid rooms without enough oxygen. The constipation came back with a vengeance too. I lay awake most of the night reading Silas Marner.

This morning, I decided I was babying myself too much, and that I might feel better if I did some light housework. I unthinkingly lifted two empty backpacks from the top of a closet, and the area around my incision swelled alarmingly, forcing me back to bed. Peggy was in tears for worry.

Walt stayed with us at the hospital all day Monday, Shirley brings us food every morning, and others have reached out too, but I feel too vulnerable to open my heart. Instead, I am more annoyed by their faults than usual, and can hardly be civil. I am surely a difficult person to befriend, much less to be married to. But then aren’t we all, more or less? Maybe the human race is perpetually at war because we are too obnoxious to tolerate ourselves.

Peggy, I can tolerate better than usual, partly because I see how hard she is trying to help me, partly because I am in no shape to be argumentative, and partly because I see how hard things are for her. I don’t know how people who live alone are able to survive life’s travails, but, come to think of it, if Peggy were alone, she would be free to go to France.

I want Peggy to go to France no matter what, but Peggy wouldn’t be able to enjoy France no matter what. This makes me even more regretful of my foolishness this morning. I wanted so very much to not feel helpless that I made myself more helpless. Every year finds me longing for my comparatively strong body of the previous year. I apprehend further deterioration, and will have to grow stronger of mind if I am to survive.

The surgeon’s nurse said he might want to do further testing for cancer despite the biopsy coming back normal. Why didn’t he think to do “further testing” when he had me cut open on Monday? I seldom go to a doctor but what I leave less enchanted. As a group, they know so little, and most of them know even less than that. Besides, their services are so half-assedly rendered that I can but conclude that money is the main motivator. A five-minute visit costs $200.

Peggy and I tried to hide the cost of my father’s pills from him, but when the day came that he found out, he argued that if enough people chose death over “highway robbery” that medical costs would come down. This is probably true, but how few are willing to volunteer.

Everyone dismissed my father as a stubborn fool. I knew his faults better than most, but I have also observed that normal people don’t achieve sainthood. You’ve got to be a hardcore hard-ass to be a saint and, for better or worse, my father was that.

fun times with Vicodin

The lymph node biopsy came back negative, but now the surgeon wants to biopsy the other side.

I had an iodine-contrast CAT scan yesterday to look for a reason for my partially collapsed lung. Preliminary blood tests were ordered for the day before, and I was in a lot of pain when Peggy drove me to the internist’s office. I had called twice to verify that these tests hadn’t been run as a part of my pre-surgical blood-work, but Peggy asked a third time when we got there, and was told that they had. The nurse had an “Oh, well, shit happens” attitude, about it, so Peggy complained to the practice manager.

Another nurse promised me that we wouldn’t be charged for coming, but I stopped at the front desk to verify it. She appeared while I was there and, looking hurt, reminded me of her promise. I couldn’t very well tell her that I no longer trust anyone in the medical community to get anything right.

I took full advantage of Vicodin for the first two days. Even with it, I hurt too much to sit up for long, but time passed pleasantly enough in bed with an ice pack on my groin. I was determined to read a book on informal fallacies, but I dozed off so often that I re-read most of it twice.

I was just starting to understand how people get addicted to painkillers when the side effects hit. I hadn’t pooped in three days and was eating heartily, so my weight shot up an incredible ten pounds, and my abdomen became as rigid as it was bloated. (When you’ve had hernia surgery, the last thing you want to do is to strain to poop.) Then came the itching. No sooner would I scratch in one place than it would start in another, and I was soon itching in way more places than I had hands to scratch. Last—but not least—I was forgetting to breathe. I would be feeling all happy and mellow, when all of a sudden I would gasp for air, and realize I had missed a few breaths. It was like sleep apnea, but I was doing it while awake. I can’t say enough bad about how this feels.

The surgeon’s nurse advised that I cut the Vicodin in half, but I decided to simply endure the pain. I thought that, being two days post-op, it just couldn’t be that bad. It was. Now, four days post-op, the pain is so intense that I have trouble walking. It is worst in my privates, which are purple and swollen.

19 hours hernia post-op

Surgery went well, as far as I know. The doctor was running 2 1/2 hours late, and I spent the last hour, as usual, in a line of ten gurneys in the pre-op holding area. These gurneys face a bank of windows opposite which stands a two-story cross (the sole evidence of Sacred Heart’s Christian ideals is that cross and a crucifix in every room).

Just before I was rolled to pre-op, Peggy read on my chart that I am 6’10”, so I passed the wait pondering the implications. As a young man, I would have thought it great to be a foot taller, but now I can see the downsides, things like beds being too short, chairs being too low, airline seats being too close, and so forth.

The surgeon wanted me to stay awake during surgery so he could have me cough when he was done. He apparently decided against this, because while I was still on the table trying to ask questions, he was calling a friend to make dinner arrangements. It was by now 5:30 p.m., and he had put in a full day, so I naturally accepted the priority of his dinner plans over my health issues (in all fairness, the tranquilizing agent might have caused me to forget being told to cough).

He did say that the lymph note he removed didn’t look ominous. I went home shit-faced on Percocet, but optimistic that I had dodged the cancer bullet. Bright and early this morning—7:30 in fact—a nurse from my internist’s office called to say that I needed to come in for blood work and a full-chest CAT scan. This was more than a bit of a surprise since the surgeon had said nothing to me about my x-rays being abnormal. The nurse had no explanation, so I asked if she might please find out and call back (or, better yet, have the doctor call). She called (no surprise there) with a confirmed diagnosis of chronic atelectasis (a word she couldn’t pronounce, but that Peggy could upon hearing the first four letters). Chronic atelectasis is a lung blockage that can be caused by any number of ominous diseases, one of which is asbestosis (I used to work around asbestos, and have long worried about it).

Other than the kind of shabby treatment that I have learned to expect from doctors, and the fact that my anesthesiologist was pitifully sick with a cold, everyone else who was involved in my care were terrific. From the young man who shaved my groin to my many nurses, I have only praise. As for the doctors, I can but reflect on the irony of the fact that they make far and away the most money, yet act as if they are doing me a favor by treating me at all.

The surgeon said I would hurt and swell more than most people (I don’t remember why), and I suspect he was right, but the pain meds are keeping the hurt down to a dull roar, and ice applied thirty minutes every hour is keeping the swelling manageable. My bandage is bloody, so even as I write Peggy is out getting a new dressing.

With this, as with my last surgery, the post-surgical pain is minor compared to the aggravation of trying to get information from nurses who don’t know and doctors who won’t talk to me.

That’s where things stand at 11:00 a.m., nineteen hours post-op.

credo

We’re like the people in the Twin Towers just before the planes hit. We can do nice things for others; we can enjoy good food and good books; we can even create meaning in our lives, but the moment will come all of this is gone from us—or rather us from it. We will then exist in the same way we existed before we were born, which is to say as matter and energy. I ate sardines tonight. They used to be little fishes; now they are me. Soon they will be something else. Such is our existence. The personal is transitory. The eternal is indifferent.

The universe is incredibly dark, incredibly cold, and infinitely uncaring. This I worship because it is nobler than an anthropomorphic deity such as the petulant and vindictive god of the Bible. Yet, I could happily partake of mass or communion because they are like the word god in that they have so many different meanings that they lack meaning. It’s not the object of worship that matters but the impulse to worship. I refer to worship that comes from the inability to not worship. In this, I find purity.

France when you might be dying!

Peggy asked if I thought she would still go to France if I have cancer. I said she should consider the prognosis. Her response was that there was no way she would go. I was so surprised that I didn’t think to ask if she would stay home to support me, or because she would be too bummed to enjoy France. I wouldn’t want her here unless the prognosis was grim. I would miss her, but no more than I would miss her anyway; and I would be awfully sorry about all those nonrefundable reservations.

Peggy and I differ in that I am much more likely to make decisions based upon money. I love watermelon, yet I didn’t buy a single melon last year because the prices were too high. Peggy was horrified. “You’re worth the money,” she argued with generous intent, but with logic that reminded me of a television commercial. “What does my worth have to do with overspending on a watermelon?” I countered. “You could just as easily argue that I am worth saving the money.”

When I spend big, it’s on non-consumables like tools or that $1,750 bike I bought last year. I’m not cheap; I’m frugal. I’ve been this way as long as I can remember, and I have no desire to change. Peggy is also frugal, but not as much. If she weren’t frugal, we wouldn’t be together. She would be out spending like the average American, and I would be home packing my bags and separating our finances. She does have her indulgences, but we’ve worked it out so that I can live with them. Her skiing—like her trip to France—comes out of common funds. Her buttons are another matter because the expense is ongoing. When she began spending what I considered a lot of money, we agreed that, for every dollar she spent, I got one dollar for myself. Her “dollars” are displayed in cases; my dollars are in mutual funds.

She argues that the stock market could crash tomorrow and I could lose everything, whereas she has already gotten enormous enjoyment from her buttons, and is unlikely to lose them. She might be right, but then again, a fire or a flood could take her buttons while my funds would go on doing their compound interest thing. Maybe I don’t enjoy greenbacks as much as enjoys buttons, but they still give me a warm feeling. Money alone can’t buy security, but I never heard anyone say he felt more secure without it.

Peggy is away (reluctantly, due to my health) on her annual “Girls’ Weekend Out,” and I’m cleaning house in preparation for surgery. Hernia surgery is low risk, yet I had a friend who died on the table, so I’m doing a more thorough job than usual. Things like cleaning out closets, rearranging cabinets, putting contact paper in drawers, backing up computer files, updating lists, and getting rid of unneeded items. Peggy literally doesn’t know how to operate the washer and dryer, and she is all but computer illiterate, so I know I would be missed.

Yet, she would survive, I suppose, which is more than I might do if she died. I can’t say for sure because I haven’t crossed that bridge. I just know that I always hold suicide as an option, and that she does not. This is another of our differences.