More Medical Appointments

After my ambulance ride to the Emergency Department at the University of Vermont Medical Center on Friday night, my Oncologist feels it is time for some additional proactive medical treatment and even some additional tests.  

My rather violent mast cell episode which included multiple episodes of anaphylaxis on Friday night and the long amount of time it is taking for my body to stabilize again is a bit concerning.  Also, considering that my blood counts have been elevating farther and farther out of normal over the past few years, it is time to take a look at my bone marrow again and run a few very specific tests in addition to the usual cell counts and cell morphology assessments.  

We discussed a bunch of stuff starting with what might have triggered this life-threatening episode as well as the episode itself.  These kinds of episodes are hard to describe accurately but probably the most accurate single descriptive word I can think of is "violent".  

These unique systemic mastocytosis episodes are also frightening, exhausting, painful, and they linger for days or weeks.  As you try to recover in the following days, you continue to dip toward anaphylaxis multiple times a day in-between periods of feeling halfway decent or at least "stable".  Just when you've been feeling well enough for long enough to think you are improving, you get hit with another bout of debilitating symptoms and/or anaphylaxis.  You need to remain hyper-vigilant for weeks afterward. 

This is not at all like the more common allergy anaphylactic reaction of "oh... my tongue is swelling up (or throat or hives) and I need a shot of epinephrine".  Allergic reactions are serious too but these systemic mastocytosis anaphylactic reactions are truly violent, painful and linger for days to weeks of unstable life support function.  Systemic mastocytosis reactions/episodes are definitely not resolved in a few short hours by taking an injection of epinephrine, taking an antihistamine, and you begin to recover.  What I experience with Systemic Mastocytosis anaphylaxis is nothing short of violent, painful, and suddenly dangerous that stretches out and lingers over the course of days to weeks requiring massive doses of extra and emergency medications.

And, since I mentioned the difference to allergy I feel the need to add another thing that has to do with why I felt the need to explain the difference between allergic anaphylaxis and systemic mastocytosis anaphylaxis.  Not only are my anaphylactic episodes nothing like the average allergic anaphylaxis but we know with absolute certainty that I am not experiencing an allergic reaction.  Allergy is very simple to pick up in a blood test.  If your body responded to an allergen, then your IgE levels will be elevated significantly.  My IgE levels are never elevated.  The manifestation of my anaphylaxis between the two is also quite different.  In systemic mastocytosis, there is a cascading myriad of dangerous and debilitating symptoms that affect life support functions.  

Actually, when I first started experiencing symptoms of my illness, allergy did need to be ruled out so I did see an allergist at Dartmouth-Hitchcock.  She very bluntly stated something along the lines of "what you have is not allergy...  you need to see an immunologist for rare disorders" and she sent me to Boston.  Consequently, when I attempt to explain my rare illness to people and they then ignorantly say, "oh, you have an allergy", I get pissed off and have a few choice angry words for them.  

In my appointment with my oncologist yesterday, we discussed my next upcoming bone marrow biopsy.  Both Sheila and I picked up on some hints that my oncologist was dropping that there might be and we should not be surprised by an incidental finding.  When I picked up on the hints, I came right out and asked her if she was referring to any incidental findings and she admitted that, yes, she was.  She was trying to carefully skirt around specifics of what comes next after the biopsy.

The primary purpose of the bone marrow biopsy is to check on the severity, classification and stage of my Systemic Mastocytosis but there is always a chance of finding other issues especially when symptoms are so severe like I'm experiencing now.  As I mentioned earlier, the fact that my blood test results have been rising farther and farther out of normal range over the past few years is also concerning.  That wasn't so concerning when my health was more stable but now that my health is failing and quite unstable, it has moved into being concerning.

Needless to say, it has been a rough week so far since Friday.