In a previous post, I focused on the good news about learning that I do not have cancer. After several weeks of being increasing led to believe that because they were unable to explain the cause for the lumps in my parotid gland, doctors thought I must have lymphoma.
Once that possibility was ruled out, a new scary flag was waved in my face, this time: tuberculosis. Now I can post with the advantage of hindsight, and in their defense, that is an advantage that the doctors did not have in early November. Still, the entire experience has turned out to be a tragedy of errors that has resolved little and as I anticipated, only leaves me with more questions, some of them quite serious.
Me and my family have been, and still are, going through a lot of stress and anxiety because at some point doctors have become intent on finding a cause for what started out as swollen glands. The very notion that it could be nothing abnormal, or at the very least, nothing so serious that my own body cannot handle it, has been completely lost at this point. Instead, as one frightening possibility is eliminated, a new one is immediately suggested.
I am familiar with this practice in modern allopathic medicine, and I have a name for it: the medical merry-go-round syndrome (MMGRS). MMGRS is seen far more often in patients who have insurance, especially it seems, government funded Medicare. With all the relief and joy I had when the biopsy showed no malignancy, I didn’t feel like announcing then what the surgical biopsy report did show.
As I relate what I am going through, I’ve tried not to get ahead of myself, but some of the most exasperating parts of the medical experience is the long waits—at least from the patient’s point of view—for additional information and confirmation (or refutation) of suspicions and theories. Once again, I’m sitting here with new information that only raises more questions and angst for me. During our followup visit November 29, the ENT specialist and surgeon who has been the primary doctor during this entire ordeal told me that the tumor was “benign”, meaning it was not cancerous.
Here is the actual language of the “final diagnosis” from the surgical biopsy report she was reading in my chart:
A. Salivary gland and lymphoic tissue, “right parotid mass”, biopsy: Florid reactive lymphoid follicular hyperplasia with necrotizing granulomas. See comment.
B. Lymph node, “right parotid mass”, biopsy: Lymphoid reactive follicular hyperplasia.
Comment: Grocott and acid fast stains performed on specimen A are negative for fungus and acid fast organisms. Immunohistochemical staining for panCk, CD20 and CD3 support the above benign diagnosis. Correlation with flow cytometry (report L10-1313) is indicated.
After the exuberance of hearing the good news that I did not have cancer had abated a bit, Doctor turned serious once again. “Necrotizing granulomas are suggestive of tuberculosis, especially in people with HIV. Seriously, you could be putting him at risk (looking at Michael), or me (pointing to herself).” I don’t know why she thought I needed to be warned about the seriousness of a potential new threat like TB. Maybe my eyes inadvertently rolled up into the roof of my head as an automatic reaction to yet another new threat to my health. Or maybe they rolled because once again, “HIV” had become the central character, not TB. I don’t know.
Doctor then assured us that her office would be contacting the infectious disease clinic to set up an appointment for me with the most appropriate doctor (read “HIV” specialist?) to get tested for TB. I didn’t argue, knowing that there would be time to think about all of this after I got out of that cramped exam room. I don’t want to have TB and I certainly don’t want to give it to anyone else, so I had every intention of following through with whatever additional tests are necessary. I just didn’t know much more about that disease than anyone else probably would, and I was also eager to start my own research on the latest monster to enter my life.
A full week later, I had yet to hear from doctor or her office about the appointment, so I wrote that clinic and “premiere” medical center off and started looking for someone closer to home who could help me. I have found an area infectious disease practice in my part of the city that has been very helpful.
I had a chest x-ray done earlier today at North Kansas City Hospital, a regional, non-profit facility that I have been impressed with over the years, and I am now waiting to hear if they find anything scary in my lungs. All of this leaves me feeling like the old days: a merry-go-round of medical appointments, tests and scans, “looking” for something wrong.
I’m only pursuing this because I’ve been warned that it could be tuberculosis and I take that seriously. Once TB is rule out (I’m being optimistic, and I expect that will be the case), no more speculation or investigations, folks. OK? I mean, if you look long enough and hard enough and bombard me with enough radiation and other stressors, you are going to give me something new that I don’t have now.
One of the other things that I notice happening as I get more stressed nowadays is that another old and familiar companion reappears out of my past: my temper. I have twice recently, exploded at a medical “official” for pushing some very tender button for me. It is not pretty, ask my family or closest friends. Afterward, I feel like I just got off a wild roller coaster ride, or had a near miss collision on the highway. My adrenaline has peaked and ebbed, leaving me weakened, tired and even shaking.
My gut tells me such outbursts are not healthy, even though provoked by and directed at doctors and health officials, but at least one friend has suggested the possibility that they serve a function not unlike the relief valve found on steam radiators and pressure cookers. Maybe, though upon reflection, I would have to argue that those devices are not supposed to activate under normal circumstances and are installed only as safety features that shut down the entire system due to some extreme condition. They are warnings that something is not working as it should be. Once activated, the smart thing to do is shut off the fuel and fix the cause of the problem before turning the needed heat back on.
I am re-committing myself to being more thoughtful and calm when someone else pushes one of my buttons. I can’t imagine ever eliminating the anger completely, but I do hope I can find more effective ways to channel and discharge it constructively. (Coming next: The mistakes and failures of the University of Kansas Medical Center (KUMC) and the hysterical, fear-based tactics of the Kansas City (MO) Health Department.)