What's Going On

The ENT visit went well yesterday.  The ostensible reason for the visit was to check my nasal passages as a part of the post-surgical observation.  Even though I am religious about nasal care (netipot, saline spray, etc.), undissolved packing and scab tissue formed in the cavity.  Dr. Strominger gave me some numbing material (as luck would have it, the left nostril was implicated) and out came ... oh, never mind.  Just be on notice, anyone who is contemplating this procedure for neurosurgery, it has proximity on its side but it is not altogether a proverbial walk in the park.  Since then the last two days I have experienced congestion in my right nostril but it is snowing outside, and I don't want to risk infection so I am just going to wait until it dissolves through the normal process.

The real reason I was glad for the meeting is that Dr. Strominger helped answer some of my questions about what to expect with the deterioration of the nerve.  First, he confirmed the outcome: the nerve will atrophy and die.  None too soon, unfortunately.  Given the pain, the nerve now holds no particular value to me; I no longer have any normal feeling on that side sufficient to outweigh the discomfort.  I also had the same thought he expressed extemporaneously: if the surgeons knew then what we know now, would they have removed it?  My answer: "absolutely."

At any rate, he discussed with me the option of having shots in my forehead, nose and chin in the middle of my face to numb the nerve.  Never mind the irony.  I made an appointment with him for the Monday before Christmas for this procedure and will take time between now and then to explore this option.  Without some form of pain management I cannot go back to work, so I must pursue something.

Let me also come clean and explain what else is going on.  After the surgery I had a blood test to explore why or how I acquired this amyloid.  The test confirm a diagnosis of a name that reminds me of Kundera's book "The Unbearable Lightness of Being:"  Monoclonal Gammopathy of Undetermined Significance (MGUS).  If you do a search with that name, your first hit will be to the Mayo Clinic, which discovered and created the diagnosis.  The test identifies certain proteins at higher levels than a normal range floating through one's circulatory system.  Elevated levels could mean nothing but do suggest further testing and in my case it would be for amyloidosis and a bone marrow cancer called multiple myeloma. Organ failure indicates amyloidosis and so yesterday I turned in my 24 hour urine collection (a barrel of monkeys) to check creatine levels.  I also had another blood test to see if there are spikes or a steady state of the monoclonal proteins.  Curious, because four years ago as a part of a regular check up the blood report noted slightly higher than usual protein levels and I recall the N.P. asking if I had had an infection.  I didn't recall anything specific and she shrugged it off.  Coincidentally when I asked the surgeon about how long he suspected the "thing" had been growing, he said about four years.  Lesson: follow up on even seemingly unimportant test aberrations!

I go to the oncologist on Friday to talk about the next step in exploring the multiple myeloma. Unfortunately, I already know what he is going to say.  I have to have a bone marrow aspiration (ten barrels of monkeys!).  I have now done enough searching on the Internet, communicated with my doctor and consulted with others informally to know that it is standard procedure. When I first learned about it I almost could not tolerate the thought of another needle, but a week has passed and I have contemplated the matter.  IF confirmed, early detection is the best chance to stave off the effects of this otherwise incurable disease. 

What if I don't have it?  I join the millions of other people who sit in anticipation of news about serious illness or cancer.  And my response will be one of profound compassion for those who must go on to confront the challenges of treatment.  With the MGUS on the table I will go on to be tested at appropriate intervals.  It may be that this entire journey, from schwannoma diagnosis through surgery to this amyloid adventure, is a gift.  I have learned that I may have the warning signs of disease.  With frequent testing to nip it in the bud, so to speak, this information could be a life expansive proposition.  

What if I do?  I'll let you know :-)

Cheers, Tracy