I fly to Minnesota for a few appointments, and end up with several.
I book a return flight, and I move it. Sometimes two times. Or five.
This trip has proven to be no different.
I arrived in Minnesota on Tuesday and technically speaking, should have flown home yesterday.
Shocker, I’m still here.
(I know, I know…didn’t see that one coming, did you??)
After a three hour appointment with my immunologist on Wednesday, it has now been officially stated that Mayo has never seen anyone quite like me, they have no idea of a cause and my diagnosis is now recorded as a “complex and obscure multi-system illness.”
Personally I think “hot mess” has a better ring to it, but what do I know?
As my doctor stated, “we are in unchartered waters.”
I think he expected me to be shocked by this.
Instead, I laughed.
Let’s be honest — I have known I’ve been in unchartered waters for quite awhile, I just needed everyone else to get on board.
The medical nerd part of me is more than a little fascinated by the fact that I may be in possession of a disease or viral response that has yet to be discovered.
The practical side, on the other hand, is a wee bit unsettled. Details.
It should, however, be noted that I am extraordinarily lucky to have the most brilliant doctor ever to roam the earth. I can practically feel my IQ rising every time I meet with him.
And most importantly when I asked him if he would vote for me for mayor of Rochester, he promised to give me serious consideration.
Smart man. Clearly.
At this point, we are at a bit of a crossroads. I have clearly defined and increasing symptoms in several systems of my body. I have exhausted countless pharmacological and holistic treatment options. I could write a Fodor’s guide to medical testing. And I’m in unchartered waters.
Good thing I like to swim.
I’ll start next week with a bone marrow biopsy in not one, but both of my hips (ya know, just to really double the fun). Turns out mast cells are finicky little fellows that often flee with great haste at the sight of a giant hollow needle (for the record, can’t say that I really blame them?) so the test is done on both sides in order to increase your chances of finding the results you need. And even if I get a negative result after completing the test bilaterally, we still can’t completely rule out a mastocytosis diagnosis, because my little mast cell friends are just THAT picky.
So to give us a little bit more information, sometime next week I’ll also have another upper GI endoscopy. You would think with the number of neck organs I have lost in the last few years that I would have a recent endoscopy on file, but it has actually been over 2 years since a camera was jammed down my throat purely to examine my esophagus and stomach. Plus it turns out that eosinophils, a type of white blood cell, can sometimes be drawn out when you have too many mast cells, and can cause difficulty swallowing. So there’s that.
I was supposed to have some other testing to use as a second option for route of treatment. It was supposed to be a very easy and clear-cut decision on whether or not to proceed with the bone marrow exam and endoscopy or head in an entirely new direction. I completed some simple blood work on Wednesday and when the results came back astoundingly out of the normal range, there was a brief 48 hour period where it looked like after 3 years of this journey, I might finally have results. Or at the very least, I might finally have known the direction that we are headed.
But, at the end of the day, we are all human, and it turns out those results were not actually indicative of any clinical findings in the slightest.
Somehow my doctor, the administrative assistant and the laboratory all missed that I take a medicine for reflux. This medicine completely skews the test results and renders all of them inconclusive.
Ready for the kicker?
You have to be off of the medicine for 8–10 weeks prior to re-testing.
Minnesota road trip in August anyone?
There is a strong likelihood that both the bone marrow biopsy and endoscopy will come back with negative results. The invariable nature of both tests, combined with my all star achievement career in false negatives yields a very high chance that I will get holes drilled in my hips and a tube jammed down my throat, just for kicks.
But at the least, I will leave knowing that I turned every stone possible and maybe even narrowed the playing field ever so slightly. And, let’s be honest, what would the world do if I suddenly stopped coming to the Mayo Clinic?
Allow me to quote my buddy at Carroll’s Cup Frozen Yogurt:
“Where have you been? Don’t you live in Rochester?”
Consistency my friends. I am nothing if not consistent.