Consistency

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.