Appointments with specialist are notoriously difficult to schedule in my end of the country; so, in the interests of a second appointment with my new internist before I die as opposed to in the hereafter, I called up the good doctor’s office before the results of the colonoscopy and endoscopy were quite ready. Dr. Th had said, after all, that if the scopes proved uninformative about the blood loss, that we would next embark on the small-bowel test. Although rarely done, this one almost sounds like fun: the patient swallows a tiny camera. Wow. Modern medicine. Gotta love it.
The receptionist answered with an almost intelligible announcement of the office name and a small flutter of paper, followed by what seemed a rehearsed statement, that Dr. Th did not need to see me again for my fibromyalgia since everything possible had been done for me, including the prescription of prednisone.
“I am not a fibromyalgia patient.” My words clunked onto her desk like six ice cubes, even as rage rose in my throat.
There was a brief silence, surprise, perhaps, that no curse words followed my terse words. I sensed her double-checking something. “Polymyalgia,” she corrected herself indifferently.
“Too many myalgias?” I snarled. “Does that mean Dr. Th won’t see me unless I take prednisone?”
More paper scuffling; then, “I’ll talk to the doctor and call you back.”
I growled and put down the phone. That was almost a month ago. There’s been no call.
The scopes’ results arrived online—another Wonder of Modern Medicine—just in time for my next session with Dr. T., the family physician who has inherited me from the GP who left town. Maybe this time, I thought, I could get a prescription for medical marijuana, which would give me better control over the amount of cannabinoids, while installing another well regulated cancer prophylactic into my protocol, on top of the daily 10,000 units of Vitamin C and 15,000 units of Vitamin D3 I was already taking in. The results from two adrenal tests had also come in, giving rise to a fresh issues.
I came to the appointment eager for answers and a strategy session. Could we regularize my lucky find of weed as nerve-pain treatment with a prescription? Did the scopes indicate where the blood loss was occurring? What could have happened to that big H. pylori population in the six weeks between the hugely positive H. pylori test and the scope which reported there weren’t any of the little critters in the stomach? Was the score for the cortisol-suppression test really “out of range” or did the governmental flunkies not understand what constitutes normalcy for that test? Why did I feel so good for two whole days while on the sliver of medication for that test? Most importantly, what was the next set of tests to narrow down the possibilities of what’s really going on in this body? Could we now proceed to the far more accurate saliva test for cortisol (i.e., adrenal function)? And how about that small-bowel test?
Plenty of meat there, wouldn’t you say, for a productive doctor-patient meeting?
It is always a pleasure to meet with the charming and approachable Dr. T. I did not expect to do battle with him. He struck the first blow before I even finished telling him the happy news of how cannabis eliminated the nerve pain with, “You’re not getting a prescription for that from me.” Damn! He is of the right vintage to have sported hippy hair in the long distant past but perhaps he is one of those who never inhaled the spirit of those hopeful, healthier times. More likely, the legal atmosphere is still too murky for many doctors to take the risk, especially after a long, blemish-free career.
Then, after deferring questions about the scope results to the surgeon, confirming that, yes, the cortisol-suppression test was wrongly marked “out of range”, and remarking that he knew nothing of the saliva test for cortisol and therefore could not order it, Dr. T. remarked in an almost confessional tone that there was really nothing more he could do. The scopes showed I did not have cancer at this point. I had PMR. I didn’t want to take prednisone. There was nothing more to be done for me.
Battle mode! From my ever-thickening blue file that is my arsenal of research, results and ramblings, I yanked out four pages of my blog on differential diagnosis of polymyalgia rheumatica. “You gave me twenty pages of stuff to read on PMR,” I reminded him. “The second ten pages were all about differential diagnosis. I read them very carefully—several times. Do you know how many conditions doctors should be testing to exclude before making a clinical diagnosis of PMR?” He didn’t. “Sixteen. Do you know how many of those we have excluded so far?” He nodded No again. “Maybe six. So we have ten to go. Here are my thoughts on the matter.” I shoved the blog pages into his hands.
“Okay. I’ll look at this and make a list of what tests we could do,” he said.
Somewhat mollified, I pulled out my latest research goody. “Great. And I’ll do this: if my daughter will come to town to monitor me, I’ll do a brief controlled prednisone treatment. Just a few days, just long enough to see which of these two groups I fall into.” He looked surprised that I would cave to the idea of prednisone under any circumstances—I was a little surprised to hear myself saying it, too. “This makes sense to me.” I tapped the research. “In these studies, recently diagnosed PMR patients were followed for six months and a high percentage were also diagnosed with cancer in that time period. In one group, 69%.”
“That’s correlation, not causation,” said Dr. T.
“Of course.” Did he think me a dummy? “But here’s the thing: the patients who responded rapidly to prednisone were not the ones who got the cancer diagnosis.”
The light dawned. “So if you respond quickly to the prednisone—“
“I’m unlikely to be on the fast track to more cancer.”
I could see from his face that he expected my body to be overjoyed to ingest prednisone, which would mean that the struggle with this Pesky Patient would shortly end. Could he see from my face that I doubted so easy an answer to the question of what is going on with this body?
I admit to having expectations of doctors. The eternal optimist, I expect them to be pleased to have highly compliant patients prepared to enact the patient-centered approach to their illness—to put together a multi-talented team of caregivers and empower them to work together. The ever curious writer, I expect doctors to be excited over the insights and discoveries that the patient-centered approach can unfold. In short, I expect them to think as I do. Perhaps, however, long years boxed into the drug-dispensing kennels of medical centers kills one’s curiosity, one’s sense of wonder, the excitement of discovery. Perhaps it’s easier over time to consider those preachy posters and indifferent landscapes hung about the four gypsum boundaries of a doctor’s professional existence as the truest windows into the world. After all, it’s not Dr. T. who’s looking a nasty death in the face any time soon.
Granted, if I get hit by a truck (again) or a bullet or any of the slings and arrows of outrageous fortune, there may be only a split second in which I know what ends me but if it’s illness, if my own body decides to obliterate itself, then I want to know the enemy, want to know what or whom to blame. I want to know Death’s new name. And who knows? With enough knowledge, maybe she’s a bitch that I can tame.