Well, decision time was here and it looked as if Bill would choose surgery, and why not, with the doctors liberally throwing around the word “cure.'” The various tests Bill endured, breathing tests, echocardiogram and MRI of the brain, were all within tolerable ranges, we were told. The oncologist noted some marks in the brain that suggested mini-strokes, but Bill didn’t hear this or it didn’t register with him, or both. There were, however, no lesions in the brain, which would have indicated a spread of the disease. Bill was hearing, as was I, that he could be up and around in a week. How was it that I doubted that it would go like this? I just did.
I confess I was warming a bit (though only slightly) to Dr. R. His confidence was disarming and overcame some of my initial doubts. I kept reminding myself he was a surgeon, confident to an extreme, even a bit cocky as they often are with their giant egos. I had many questions, which I found myself apologizing for.
“I hope you don’t mind all the questions,” I said. He was gracious and dismissive. What else could he say? I don’t know what possessed me, just my ornery streak, I guess, but then I said, “It is well you don’t because I would ask anyway.” That remark seemed to cool things down between us. I sensed a thaw when I told him I had looked up his background on the Internet and noticed he spent a year in St. Louis at Washington University on a surgical fellowship. I noted that my daughter lives in St. Louis and had just graduated from St. Louis University. He seemed more friendly after that. And then I ruined it all with my words about questions. Ah, so it goes some days.
I was surprised when Bill piped up and asked the obvious question. “Have you done this type of operation before?” Dr. R. smiled, no doubt tolerating such queries as part of his job, and answered that he had, many times. He didn’t give an estimate of how many times, but the oncologist moments before had replied to my query about Dr. R.’s overall experience and skills. He assured me the doctor was very good at what he did and quite experienced. I wasn’t sure what to make of the word “quite,” but I let it go.
I had a question about Bill’s mental condition following surgery, and so I asked Dr. R., “Do you think his mental state might deteriorate post the anesthesia and operation?”
“You hear of that when it is heart surgery with lung machines involved,” he replied, “but not in this situation.” Dr. R. seemed so sure of what he said. Then he added, “But I have never operated on a patient with schizophrenia.” He said this in a way that I took him to mean that he looked forward to such a surgery. Pardon my cynicism, but I felt at the moment maybe he was thinking he would get a case study out of Bill’s operation, something suitable for a medical journal, perhaps.
“Of course, we will have a psychiatric consult and we will get his psychiatric meds to him as soon as possible after the surgery.”
“You understand, doctor, I hope, that Bill has been for many years on the strongest anti-psychotic medicine out there, Clozapine” (brand name is Clozaril). I looked for some recognition on the doctor’s face, but there was none. I suspected he knew nothing of the drug. I just hoped he would look it up when I was gone. I went on.
“Clozapine works well in some instances, and Bill I suppose is one of the success cases, but it is a drug of last resort and it comes with side effects. His blood is checked each week for anemia. A bad reaction to Clozapine can lead to death.” I guess that last part was obvious, but I felt the need to say it anyway.
I told Dr. R. that Bill and I agreed before today’s meeting to put off a decision concerning surgery until the end of the weekend at least. The doctor looked disappointed, which did not make me feel better about him doing the surgery. He came across as a bit too eager for my liking.
“When were you thinking of doing the surgery?” I asked.
“Right away. Anytime within the next two weeks, surely.”
I kept thinking of my ex-wife, an intensive-care nurse, and what she might say in this circumstance. “Why is this guy not busier?” I guess if I had said we would be ready tomorrow, Dr. R. would have said, “Fine with me.” He wrote his telephone number, an inside direct number, I gathered, on an envelope. “Just call and leave a message on what you decide. Mention Mr. Jenkins’ name and I will know exactly who you mean. He is that firmly set in my mind now.”
Again I thought, Does he really hunger to do this surgery? Is it because Bill is a schizophrenic, and an unusual case? God, I hope that isn’t a major consideration in all of this.
Another thing comes to mind a lot lately (as I myself get older), and Bill’s situation brings out certain thoughts that I have in spades. These ideas I have are very unsocial-work like, I confess, and I don’t wish to come across like some kind of Nazi. It is simply this: Bill is about sixty-eight years old, and for thirty years or more he has done nothing but take, take, and take some more. And at what could be the end of his life, he is taking big-time, indeed.
The costs of all this medical stuff has to be enormous. For years now, I have been taking Bill for tests, often very expensive tests, that are sometimes duplicated, things like colonoscopies, endoscopies, MRIs galore, CT scans in great numbers. I have taken him to hepatitis doctors, foot doctors, diabetes doctors, eye doctors, and more. This has gone on since Bill was forty years old. And of course, he gets a monthly check, two in fact, and meals-on-wheels, food commodities, free transportation, and the list goes on.
Now he has not worked since he was about thirty-five, maybe earlier than that, and at that time he was a serious drunk, eventually an in-the-gutter drunk, which easily could have contributed to his severe mental illness later in life. It was said of him in his younger years that he was “Hell on Wheels.” I do know that his first two children, who now live in Florida, have absolutely no contact with him whatsoever, and have not for many years. One wonders why.
Now Bill is a delightful, charming old man who wants to live until he is ninety or more, but God forgive the question: Does he deserve such care? I will fight to see that he gets it, and he will. But these thoughts creep into my mind sometimes because I know that another person, not eligible for all that Bill is entitled to, could not get all the expensive care Bill is seeing, not without mortgaging his future. Most insurance companies would work hard to find a way out of paying such high costs as Bill incurs routinely.
I was reminded the other day how Bill takes all he gets as a given, as an entitlement. I had recently taken him to a foot doctor who cuts his toenails and washes his feet, but also (because the benefit is there) wants to fit him for diabetic shoes. Bill knows this, of course. One day recently the foot doctor’s office called me wanting to fit Bill for shoes on an upcoming Saturday. I explained I don’t work on Saturdays and added that Bill currently had a lot of critical medical issues ahead of him. This fitting would have to wait, I told them, and when it is scheduled, it would have to be on a weekday.
I didn’t mention any of this to Bill, but he noted one day how we had not heard from the foot doctor about the fitting and I told him the truth.
“Yeah, the foot doctor called me, but he wanted the fitting on a Saturday. So I put him off, since I don’t work on Saturdays.”
I won’t say Bill was critical of my decision, but he seemed surprised that I did this without consulting him and offered that he might have been able to get his brother-in-law to take him on a Saturday.
“Listen, Bill,” I responded, “you have a lot going on now. The shoes can wait.” He accepted my judgment, as I knew he would, but at the same time I am sure he saw this shoe matter as another thing he is entitled to, a pair of special shoes that surely will cost several hundred dollars, and for which he would not pay a penny. The truth is, a lot of the doctors you deal with see us coming, so to speak, see a medical card or two (in Bill’s case, two) and all but start to salivate. I took Bill to a hepatitis doctor a year or so ago and they were hungry to start an expensive and long-term treatment for him, something called Interferon, and when I said to the physician assistant I was dealing with (I never did see the doctor in the adjoining office) that I wanted to run this plan they offered by Bill’s primary care doctor, the assistant took me aside and said, “You know, sir, Mr. Jenkins could die if you delay.”
“Well, maybe,” I replied, “but we will wait, just the same.” My guess was he had this Hep C for thirty years or more and had no symptoms, and Interferon comes with several side effects (it often knocks a patient on his ass), and it is costly. I guessed right too, for Bill’s primary care doctor vetoed the special treatment. She said she would just wait and watch the Hep C, and that was, as I said, well over a year ago. But before we left the specialist’s office, the physician assistant convinced Bill that he ought to have a blood sample taken to check for AIDS, another waste of money, but profitable to the doctor’s office that was ordering it.
At any rate, surgery was scheduled for Bill with Dr. R. for Monday, December 5, a mere week away, and I was still uneasy. They had him reporting to the hospital that Monday morning for his operation at noon. I could not understand, given the severity of the procedure he faced, why he could not be admitted to the hospital the night before, so I set about trying to arrange for it.
Raymond Abbott is a social worker.