A NEW PERSPECTIVE

First, it’s time for a confession. For those of you who were reading about “my friend’s” coping with some unwelcome news about his personal health, you need to now be informed that “that friend” was really me! Yes, I have spent large amounts of time and energy during the past three months in meeting with a variety of representatives of the medical community, including family physicians, neurologists, and oncologist-haemotologist. And a number of times I have been led to believe that the word “terminal” could be associated with the condition, and not too far off in the future.

This sad state of affairs was brought on by a seeming increase in the progression of peripheral polyneuropathy( we’ll refer to it as PP), represented by a gradual loss of feeling and strength in the feet and legs, and potentially moving upward through the trunk, arms and hands, and finally to the brain with a resulting dementia. In my case, many of my colleagues already believe that dementia has set in, and probably a number of years ago; however, there is as yet no scientific basis for their unwanted speculation. They’re just being either playful or nasty.

PP has many causes, one of which is diabetes;  PP is common in sufferers from that disease but fortunately I’m not a diabetic. It is also associated as a symptom of a multitude of other diseases, and our task became one of trying to determine which one. I was also told that in about 30% of cases, the cause is “idiopathic” (undetermined). So, we embarked on a number of tests, ranging from somewhat sophisticated blood tests ($4400) through 24-hour urine testing to bone marrow biopsy. The results of these, only finalized this past week, eliminated a number of diseases that were being considered to be the culprit including myeloma (a form of cancer) and several autoimmune diseases (Lupus, MS, Amyloidosis). The oncologist settled on monoclonal gammopathy and in collaboration with the neurologist indicated that my immune system is evidently not satisfied with the body I’ve carefully tended all these 73 years, and is attacking not only the myelin sheathing around the nerves but also the nerves themselves. At the same time, the literature about MG indicates that it can develop into one of those other undesirables, and must be monitored carefully through periodic blood testing, in order to “catch” the changes while in early stages. In my case, some form of neuropathy has emerged and needs treatment.

The good news, for me, is that the PP condition is treatable and, depending upon the treatment selected, can slow or halt the progression of the disease and may in fact improve my condition. The bad news is that the first choice suggested uses immunoglobulin, an extract made from the blood of several thousand of my fellow humans, and is referred to as “IVIG”, one of those alphabetized names that hide the serious nature of the procedure. It would begin with a monthly intravenous injection (read “chemotherapy” with accompanying nausea, headaches, etc.), the amount to be based on my body weight (191 lbs.), and cost about $15,000 per shot. It has to be done in a hospital outpatient setting; potential complications include anaphylactic shock, kidney failure, and a plethora of other nasties, depending upon the degree to which I might be allergic to the drug. And I already have lots and lots of allergies.

Naturally, I was interested in hearing about any other alternative treatment regimens, and the only one mentioned makes use of extensive steroid therapy. It was downplayed by the neurologist, mentioning that it has such unwelcome side effects as loss of bone density, weight gain, etc. I wondered how he compared these side effects with those described as possible with the IVIG treatment.

At this point, I’ve discussed the options  with my family doctor, in whom I have total trust given his track record of thoroughness and competence over the many years of our association, and next week I’m meeting with the oncologist to get further insights into MG, even to the point of possibly locating a manor research facility that can provide further resources. My doctor thinks that we should at least begin with the steroid regimen; he can monitor for side effects and provide a major amount of control. Of course, the fact that each pill only costs about a dime never enters my mind. Another doctor friend, an internal medicine and Alzheimer-dementia specialist, also leans toward the steroids. I need to find out how steroid benefits compare with those of  IVIG, and if the benefits outweigh the potential risks.

In summary, it appears that I shall be around for a long time and possibly continue to enjoy the benefits of retirement. I’m already scheduled for a return school evaluation trip next March, to Riyadh and Jeddah in Saudi Arabia, and a potential April trip to Germany. The doctor said that one factor in my favor is that I’m in very good physical shape (for my age), which will help in treatment.

Enough of that.  Let’s look at a couple of questions posed by close email friends, good topics for discussion. The first originated in a discussion that the lady writer whose talent I most admire had with her teenage son. They were discussing the topic of love and its positive and negative aspects; she asked him “Is it better to love and then suffer if the relationship is ended, or try to avoid the hurt by not becoming involved at all?” She indicated that his answer was to take the chances and experience the emotional highs of the relationship. He must have been reading Tennyson, who said “Tis better to have loved and lost, than never to have loved at all”. I certainly agree, even to the extent that though the relationship may be ended, at least in depth, each of the participants is forever changed and may in fact have gained some quality or motivation that improves the total life experience beyond the moment. I would be interested in reading other’s opinions and reflections.

The other question came from some tentative remarks exchanged about religion and faith, and was expressing, at least it was my perspective, a need for clarification relative to “good and evil.” The question can be paraphrased by “How can a person who is a good person, hate?” Quite often these days we see diatribes against Islam, making the assumption that all Muslims are terrorists when in fact most of them want the same things “we” want, to go about their daily lives unencumbered by thoughts and deeds of terror and violence. Their Q’uran and the Christian Bible share many similarities and roots, one of which is the perception of the Supreme Being as one who demands loyalty but at the same time is forgiving to those who believe. I had a brief conversation with a man who was a student in my middle school 40 years ago, and who claims he read in the Q’uran that the true Muslim must terrorize and kill all those who do not follow Islam. I disagreed, but it was difficult to continue our discussion at the counter in the hardware store. And, knowing how he was as a student, I doubt that he really has read the Q’uran. The bottom line, for me, is that his perspective is not unusual, it is part of the unreasonable, irrational Islamaphobia sweeping throughout the country. For many of our fellow citizens, they believe that for a Muslim “to be good”, he must “hate”. Again, I would be interested in some input.

Always Be Happy!                         Triumph Over Your Challenges!

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