Silence is not Golden

Test results are in.  The laboratory gods have spoken.  There's nothing wrong with my husband. Well, you know, beyond the obvious.

Michael's thyroid is apparently fine despite the swelling. There was no insight given as to why this gland in the neck is bigger than it should be, just that the blood tests showed nothing.  Kidneys, liver and everything else that could be studied - all working fine. Therefore no need for further investigation. The only slightly imperfect result was a low-normal reading for Michael's vitamin B12 levels but not enough to cause any alarm.  I could put him on a supplement, or not. Up to me. When I asked if there might be any connection between the B12 malabsorption and the thyroid, the answer was an abrupt no, even though some of the internet links I found do make the connection.  I understand that internet sites are not always reliable and need to be corroborated, but it is an interesting link nonetheless. I will continue to watch the thyroid closely.

I know the system is overloaded, and where there isn't any real smoke, no need to bring in the fire brigade. But I am left with a lingering feeling that things aren't right. Mind you, as I have said repeatedly, Parkinson's disease is an all-encompassing disease that seems to affect every organ in the body, though so far none of his seem to be seriously compromised. Except maybe the heart, though I suppose that could be mutually exclusive to the PD.  All that is happening, perhaps, is just the progression of this nasty disease.

I have learned through years of caring for sick parents and my husband that medicine is an inexact science despite confident assurances otherwise from the good people in the profession.  I am finding, as I become more confident myself in challenging the doctors when pronouncements are made, that most are willing to admit they don't know or that they are struggling with a difficult choice of treatment.  Recently my mother-in-law suffered a mysterious attack of pain to her right thigh that rendered her incapable of walking. It took days of hospitalization and oodles of tests (she claimed that "gallons" of blood were drawn from her frail body) to conclude days later that she had suffered a massive spontaneous rupture in her leg caused by raised levels of the powerful anticoagulant Coumadin in her system.  She was given many blood transfusions, vitamin K injections, and the drug was eventually withdrawn in an effort to stem the alarming bleed.  It is more than three weeks later and she still sports an enormous ugly, swollen bruise that stretches from hip to ankle and is very slowly getting back on her feet.

What was interesting to observe, when I had the good luck to be present when the parade of doctors paid their visits, was how uncertain they all were on how to proceed. But the uncertainty was only admitted when I pressed for answers.  Their dilemma was this: to keep her on the drug meant risking another bleed; taking her off might trigger a fatal clot. Their job was one of risk analysis, a tricky one at best. For a few days they were back and forth on their course of action and in the end opted to resume the Coumadin, assessing that to be the less risky course.  I sympathized with these doctors who were trying their best to make the right decision. I was amazed at one doctor's honesty when I challenged her by suggesting, after the frustration of listening to the team's vacillation over several days, that their decisions were much like tossing a bunch of balls in the air and whichever one they caught was the decision of the day. She admitted that was a pretty accurate assessment in this case.

So medicine is an imperfect science based on the vast but still very incomplete knowledge of the human body. Medical folks do their best in difficult circumstances but have to rely on sometimes spotty information from the patient whose condition, fear and anxiety may render him/her incapable of giving a complete picture. Often they are only making an educated guess, I have discovered. Their tests, of course, help considerably in the process of diagnosis but are by no means the whole picture. In my mother-in-law's case, for example, no test seemed to show the cause of the terrible pain in her leg.  At first it was being dismissed as an old woman's confusion over a forgotten fall, despite the absence of telltale bruising on Coumadin-sensitive skin in the first few days. When I realized this attitude prevailed, I told a staff member that if this still very sharp, lucid woman had said there had been no fall, there had been no fall, and no, she was not exaggerating her pain; I speak to her at least once a day and know very well how clear, aware and stoical she is despite her advanced age.  She has a better memory than I do. Then as the days wore on, the terrible bruise emerged giving them the indicator they needed, the indicator that no sophisticated tests could reveal and proving that Michael's mother hadn't been imagining it.

This is where a knowledgable advocate can be so helpful. This is why I continue to do my homework whenever a new symptom arises.  I may be way off base and exaggerated in my own amateur assessment of what is happening to Michael on any given occasion, but as the person who knows him best and is most acquainted with his experience with this disease (second to him, of course, but his powers of articulation are gone), I am in a unique position to offer much insight to the doctors, saving them a lot of time. It is important for the advocate to feel confident enough to put forward respectful observations and ideas, no matter how silly it may feel. This isn't about my ego so it doesn't matter if I get it wrong. My job is to observe closely, toss around ideas, make connections, then put them out there to the people who know better than I.  Then my job is to listen carefully to the diagnosis and treatment instructions, and protect Michael's right to humane considerations. Oftentimes I have guessed correctly what ails my husband; often I am way off base. But I'd rather be wrong than silent.

What frightens me more than anything is the realization that many, if not most, people do not have advocates when they are seriously ill and cannot speak for themselves.  All of us, in these times of beleaguered medical staff and overcrowded hospitals, need someone to stand up and speak out for us so we are taken seriously and don't get lost, forgotten or ignored in the system.