In Memoriam of Farting

So, Andy and I have this strange tradition.  Given that there was a long period of time where my digestive tract was rigged to exit out of my abdomen--twice--that meant that not only poop was exiting out from somewhere other than my anus but also any air was likewise contained within the ostomy bag.  Once everything was reconnected, if Andy started to groan when I actually farted out of my own butt again, I would remind him (jokingly, of course) that it was a miracle and he should appreciate it and be happy and even grateful that I could fart again as he was trying to cover his nose with his shirt or a blanket while I was also trying to tug it off of his nose.  He takes this all in good humor. 

Now we're preparing for the permanent ostomy (whether that will be an ileostomy or a colostomy is still uncertain), it occurs to me that my farting days are numbered.  What a weird thing to feel nostalgic about.  

• No one can ever blame me for their own fart ever again, provided I don't obviously lift the flange and let out some of the air trapped therein, at which point any hypothetical accuser has asked for it, after all.  
• Since I will have no sphincter control and the ostomy site, I cannot control when it makes noises.  This offers a certain kind of freedom in refusing to feel awkward about the gurgling sounds my body makes.
• I will never have to worry about "not trusting" a fart ever again.  My pants and underwear are safe, henceforth, from sharting.

So, I'm struck with another odd question:  are there elements that I will miss about farting?  I haven't really found body humor as funny as your average bear for a while, but appreciate that there are moments where it can be amusingly timed.  Other than that, I've been wracking my brain and haven't really come up with anything other than the joy of grossing out Andy on occasion. 

What I might actually miss, though, is a particular sense of belonging that I had never realized.  I never appreciated farting until it was only coming out in a bag and then when I was routed back.  I've had the last four years or so to appreciate farting again.  I bring more attention to it with our weird "It's a miracle!" running joke, still reveling and confused all at once.  Soon, that will be one way where I'm just not "normal" anymore.  

Some of that is an illusion--my normal is going to be different just as it always has been, though in less obvious ways.  The ostomy will be under my clothes, but still a visible bulge, more apparent than my signs and symptoms used to be, and always on the back of my mind.  Sometimes, I wish that people could just look at me and know that I'm fighting this invisible battle, so that I didn't have to ask for help; other times, I'm glad that I can hide it away when I don't want to talk about it anymore.  Similarly, I've been very open about most things, but at the same time, I appreciate that I can choose when I want to be open.  The further we drift from "normal" the more intimidating it will be to discuss it and the more difficult for people to really understand.  Yet, it will also be more rewarding, bringing a stranger perspective to a normal place.  I will continue to write what is real to me.  

I imagine that I will feel a certain pang when someone farts around me (be it a tuba, a duck, a burble, a rumble, or a deflating balloon animal kind of sound); I won't belong there anymore.  I hold this brief moment, now, in memoriam of farting and all that it might imply. 

And, yes, you may giggle now.

The Call of the Void

Sometimes, I'm sitting in a group of people doing perfectly normal things, having a perfectly normal conversation (well, normal for me, anyway) and in the middle of nowhere comes this strange thought, bright and clear across my mind:  "Tell them they're worthless." 

And I'm shocked.  I have no idea where that thought came from.  And I would never say that to this person or anyone.  I resist the urge to shake my head to make the thought go away, hoping that I have given no outward clue at all what just happened. 

Another time, the random thought to swing out and punch the stranger walking by.  Perhaps that particularly raunchy scene from a movie I saw six years ago while I'm sitting in church listening to announcements.  I hope very much in those moments that no one can read minds because they might get the wrong idea. 

These are intrusive thoughts.  I used to feel ashamed about them, that something must be wrong with me for these things to pop in my head--Jekyll and Hyde kinds of fears.  They're not intentional.  I wouldn't act on them or say them, when relevant.  They just are.  And other people get them, too, those unbidden, uncharacteristic thoughts that cross your mind.  Provided that you don't act on them, of course. 

Now, there is a subset of these that is a little bit different.  Sometimes, when I'm driving I think "I could just jerk the steering wheel and then I'd never have to worry about anything again."  I've heard this called "The Call of the Void."  Like the other kinds of intrusive thoughts, I don't plan on following through with it, but I always think about these a little bit longer.  These, I think, stem from a natural urge, the want to escape away from all of your problems. 

I am so very tired of having to deal with all of my Crohn's symptoms.  I'm tired of organizing my doctor's visits around my work schedule.  I'm tired of arguing with insurance companies.  I'm tired of needing to excuse myself from activities.  I'm tired of feeling lousy. 

OF COURSE escape is alluring.  I might linger on these kinds of thoughts more than I do other intrusive thoughts, but I let them slip by, too.  It's okay to have these kinds thoughts.  There's one big caveat to the Call of the Void though:  I know that if I start having these thoughts  too frequently or I start considering acting on it, that's the point to reach out for help. 

So that got me thinking on to a different question:  what are healthy escapes and what are unhealthy escapes?  Anything permanently damaging falls into unhealthy, but anything that enables you to escape "too long" also seems to fall toward unhealthy.  Even something as innocuous as videogames has a stigma attached to it, if the person plays "too much."  Where are the lines?  Is it ultimately about finding balance, working on enough escape to see all of those problems from enough distance to think through a solution more effectively.  And are those lines different for everyone?  That doesn't mean, though, that people won't try to enforce their boundary expectations on you, just like when people subtly try to enforce their own idea of how you should manage your health or how and how long you should grieve.  A little food for thought for your day.

Temporary escape is okay; it's okay to want a break and to take a short, healthy break.  
I can't tell you how to deal with all of your problems when you've hit that point of too much.  I can only tell you what works for me:  I find comfort in getting back to a routine, in exercise, in writing, which provide a certain kind of comfort and processing yet not always that particular sense of relief that I crave.  I may never get the full rest that I want, but by learning the best coping mechanisms for me, I can take some of the weight away and make it easier to carry.  But I do want to stress to you that you are not alone.  When you need to find some kind of escape, find what is healthy for you and what your needs are, not what anyone else thinks they should be. 

And when your brain plugs in the Ducktail's theme song in the middle of your important meeting or comes up with something entirely out of character, know that you're not alone there either.  

An Update, Regarding Surgery and Thoughts around It

I want to make an update, but I've been having some difficulty finding a good way to jump into it.  So, I'll start with the cut-and-dry facts. 

• We went to Mayos last week and made it back safely.
• They placed two Seton drains.
• Proctectomy has been scheduled for November 8th, with tests and consultations on the 6th and 7th. 

Now, then, what the hell does that mean?

For the first part, that's the easy one.  It was good to spend some time with my brother and my father.  We had a fun trip to the Mall of America and sushi for supper that night.  Mike actually lost his glasses on the first loop of the SpongeBob rollercoaster, which meant for the rest of the ride I was laughing and shouting "did that just happen?"  Once the coaster stopped, we told Dad what happened, resulting in a deadpan "you're kidding."  However, when we stood up, his glasses were wedged between the seat in front of us and the car itself.  The situation, then, immediately switched from incredulous frustration to incredulous relief, which also made it hilarious.  We got Caribou Coffee a few times, read to each other, and had some good catch-up time. 

In the appointments themselves, we got exactly what we asked for--we got options.  It happens that our best option is surgery.  Turns out that the fistulas bursting open was a little more dangerous than I had realized, which led to our decision to put in the Seton drains, mostly as a stop-gap. 

Anyone asking what a Seton drain is?  This was a new one on me, too.  The only ones I've run into that have known what it is are somewhere in the medical field, even in making an appointment at my doctor's office the front desk staff had to ask what it was and they deal with a lot of my kind of ridiculous regularly.  So here's the explanation:  right now, these fistulas that I have created their own path from the rectum to exit out somewhere else, eventually to open air to drain...stuff out.  A Seton drain threads a suture/string/something through the passageway until it loops back out, at which point that the ends are tied together.  Now recall that both of these "starter holes" are in the rectum.  It's kind of like a weird piercing that I poop right next to.

It is just as annoying as it sounds, maybe more so.  I need to keep it as clean as possible, and it is suggested that I take a bath pretty much every time I have a BM (bowel movement), and I don't exactly carry a tub around with me or have access to one at work.  Now let's add a bit more to that:  part of the drain, that loop of suture string, is literally flaying open my skin.  With the way things are going, I think it is wholly possible that this loop could eventually work its way out.  Yes, I have talked to a couple of parties about this, and have been told to keep it as clean as I could, let them know if it "gets worse."  See, I had thought that flaying open was pretty bad, but at least it's been documented in three different places now.  

That brings me now to the third point, the surgery itself.  If nothing else, I will not have to deal with these drains any longer once I have had that surgery.  Also, we knew this surgery was inevitable and now we no longer have to worry on when it's going to interrupt our lives because we've chosen to do it on our terms rather than when my body forces us to.  My doctors were emphatic that whenever I couldn't stand the symptoms anymore was when we could pull the trigger--I have hit my limit.    

Sometimes, that is it.  I feel confident that we are making the right decision.  I cannot dwell on the what-ifs because they exist in another reality that I will never know.  This is the decision I am making, so whether it was the right one at the right time, we are doing the best we can with what we know now.  I have done everything I can to avoid this for as long as possible.  It's time to let it go.  There is time to get to work preparing all that I can in the meanwhile, lining up help and logistics.  There is peace in this decision.  There is calm.  

And then in other moments, my tears choke out the wordless wail into a silent contortion of  features.  There is too much emotion to process in a moment.  I can't even figure out how to let it out, it feels so impossible.  There is a roar in my ears and tightness in my forehead.  I forget how to breathe.  I am robbed of words, voice.  And for a short time, I am lost.  

When I can swallow again, the feeling recedes to a weight behind nose, at the top of my throat.  Crying doesn't always seem to make it feel any smaller, but some days it does.  I can summon it in an instant if I wanted to, but I am not constantly overwhelmed by it--only sometimes.  I've learned to let that grief wave roll through me, to bodysurf rather than fight the current.

I'm spending pockets of time in both, oscillating to helpful coping techniques and spending time in the trauma vortex in turn, titrating the emotions.  There's a lot to work through, yet, and about 84 days, as of writing this, to hopefully make a dent--that's a lot and little time all at once.  And I have no illusions that this will be the only blog about this before or afterwards.  This is a continuous cycle of reacceptance, in that I accept that I have this disease but must constantly reaccept what accommodations I need to make.

But in the meanwhile, I just found out there's such a thing called "Baby Animals in the Wild" is on Netflix. 

Mayos and Surgery

I had two discussions on Tuesday afternoon and am still sifting through all of information.  One of those components was how potentially dangerous these fistulas can be, particularly the violent reopening possibly getting into the bloodstream involving then some systemic infection.  Unsurprisingly, the surgeon suggested surgery.  The doctor on the medical side of things has me doubling up on my main medication but also brought up surgery.  Both doctors put the ball for this firmly in my court, noting that if my symptoms are tolerable, there's no rush.  However, both doctors agree that this surgery in an inevitability, though neither can really say when. 

But I am so very tired of this hanging over my head.  Andy and I are of the opinion that if it's coming, why not get it over with?  We've not scheduled anything yet, but I think that within a year or a year and a half, unless the new treatment plan takes things on a significant turn. 

That's heavy. 

Particularly now as I'm recovering from an outpatient procedure and reminded once again of what that part of the process really means.  I remember what it's like to live with an ostomy.  I had blocked out what it was like to go back into surgery. 

For Mayos, I've got it pretty well down.  I make it a point to eat something the night before that sounds really good, aware that I won't have anything else until some crackers or pudding after the procedure itself.  And I like to go see a movie the night before, too.  This time, we watched The Count of Monte Cristo in the hotel room together.  After that, I shower with Hibiclens soap, that I refer to as "gas station soap" because it smells like cheap soap you'd use in a gas station bathroom.  This red goop is slathered on, left for two minutes as I avoid the warmth of the stream from the showerhead, then rinse.  The next morning, I sleep as long as I can, so I won't notice that I'm hungry for as long as possible.  One more shower with the gas station soap, in order to reduce the possibility of post-surgical infection. 

We then head down the shuttle to take us to the right Mayo building, usually Eisenberg (stemming several choruses of "We're taking Larissa to Eisenberg!" ala this tune).  I walk up to the front desk and find out what floor and station I need to head toward, walking around the corner to the left to the elevators.  We follow the directions on the wall and make our way to the nurse's station, me and whatever entourage I have with me. 

The nurse I greet sees that I'm sent to my assigned room, pulling out a gown and some grippy socks (so as not to slip on the floor).  I strip down everything and put the on the gown, clothes placed in the locker or in a plastic bag and then in the locker.  Trying not to flash anyone, I settle on the bed awkwardly.  I cross my legs unconsciously; even covered I feel vulnerable.  Warm blankets or warm air help make this at least a little better. 

My nurse for the day introduces herself and, after checking my name and birthday, goes through another few questions and takes vitals.  I am asked what procedure I am expecting today, to ensure that everyone is on the same page.  Another person comes in to start my IV.  Then, we wait until I'm called down to the next stage, the Pre-op.  I get on a different gurney, the warmed blanket tucked under my feet.  The warmth seems to evaporate off of the blanket almost immediately as the bed is pushed down the hallway, generating a breeze with that cool, sterile air.  My arms stay at my sides, careful not to bump the IV site, and my legs are still crossed at the ankles.  I greet and nod to people as we zip by until we eventually land in my own small room.  I have thoroughly lost my bearings on where we are. 

Another nurse comes in, introduces herself or himself, and confirms with me that I am who I'm supposed to be and I know what we're planning on doing today.  If they brought the antibiotic that they'll be giving me during surgery or even if they don't have it, I ask what it is to make sure that it is not the one that I explicitly asked them not to use.  Then, I stand my ground and explain that they will not be using that particular antibiotic and they have to contact the pharmacy to get it switched.  They cannot give me an explanation that I have not heard by this point, and I'm pretty sure they mention Gram Negative bacteria because they don't think I know what it means. 

This time, I had a view of one of the doors and did a lot of people watching while I waited for a little more than an hour doing so.  At some point in there, the anesthesiologist comes in and makes introductions.  I ask what cocktail they will be using today, because I make it a point to know.  They ask a lot of other questions and check my airway, particularly if I'm going to be intubated.  Time goes both fast and slow at the same time.  I am given a fashionable hat to stuff my hair into to keep it out of the way. 

Why are they always blue?

Eventually, my gurney then gets wheeled into the OR proper.  It's always cold in the OR, particularly when your warmed blanket is just a thin blanket by now.  I am asked to move to the operating table.  My IV port is then hooked up to the appropriate solution, and I am asked again what we are doing today, confirming my name and birthday one more time.  The electrodes for the EKG are attached to my chest.  The other persons in the room introduce themselves.  I try to keep from shivering.  I allow them to take my glasses and feel more naked than before.  I am secured to the table.  The large, circular lights above are all the I can see when I look up, apart from the face that hovers over me from time to time to ask another question or check on me in a different capacity. 

There are two or three of these above my head.

I am given a mask with 100% oxygen, and the first wave of pain killers hit, making me feel heavy, heavy, heavy as the world begins to slip away. 

I wake up somewhere else, still feeling extraordinarily heavy.  I am reminded to keep taking deep breaths, because I am forgetting to breathe.  I want very much to go back to sleep.  My throat hurts from the tube that they placed down it, likely to hurt for the next couple of days.  They give me a spoonful or two of ice chips as I'm waking up to help.  Fighting, fighting to stay awake when breathing is oppressive.  I give a test wiggle to see what hurts.  Finally, the heavy feeling starts getting better (though parts of it will linger over the next couple days), but I'm still antsy and uncomfortable. 

My bed is moved back up to my original room.  My entourage is coming if they're not already there.  At some point, either I or my family has been given some basics of how things went.  I have to go for a walk, eat something, void, and meet a couple of additional criteria before I am allowed to leave.  If this is a longer stay, a more complex surgery than something outpatient, then we settle into the room, under some of the same criteria with a few extra bells and whistles, like pain management.  Occupational therapy, physical therapy, wound ostomy care, whathaveyou will also stop by as necessary over subsequent days.  If it is overnight or more, there will be a parade of phlebotomists, the main residents under my surgeon, and then a posse of people learning under my surgeon (really, possibly twelve different people) to come in and discuss my case, all by the time I have breakfast decided and delivered.  Well, the last part there is more Mayo specific, but you get the idea.  Over the next few days, anywhere there was an adhesive on my body gets this shadow of residue, showing exactly where the piece of tape, electrode sticker, or whatever else was placed. 

This go around was a minor procedure, taking a closer look at the angry areas and feeding through some seton drains.  So, the two fistulas that have an exit, imagine some fishing line that goes from where the hole starts in the rectum and all the way through the fistula, exiting out and tied to itself.  The seton drains keep it from closing, meaning that it continues to drain.  So far, they're damned uncomfortable and bleeding a lot, because they're fresh.  This procedure, though, takes out some of the immediate danger, that it cannot explode if it cannot build up pressure.  It gives us time.  Meanwhile, I'm awfully scared of what the first poop is going to be like with these in. 

No matter how many times I've done this, I'll still admit that going into surgery makes me anxious--there was only once that I can think of where a different emotion predominated, that being relief when we were going in for the emergency surgery after my bowel resection had failed.  And I'm glad that I do still have that healthy dose of anxiety--I don't want this to ever feel normal.  Familiar is bad enough.  Once I wake up from this surgery, life and self as I knew them will be done in a few senses.  I'm looking forward to being past the anxiety of deciding, but not the recovery time, the adjustment time.  I am keeping my eyes on the goal and in the preparation details at the moment, like focusing on the marriage and not the wedding details.

That means that emotionally right now, I don't really know where I'm at.  I'm making plans, weighing my options, waiting on some additional calls.  I don't know whether it's better to ignore everything or sit in a pity puddle for a while.  That's going to take some different sifting. 

In the meanwhile, though, thank you all for your continued thoughts and prayers.  They have meant the world to Andy and me.  Thank you, too, especially to those who reached out to Andy this week.  If you missed out this time, unfortunately, there will be another place to be present, whenever we do dive into that surgery. 

More as it develops. 

Evolution of my Perspective of Swearing

Given the title, I thought this would be assumed, but I'll put a disclaimer here just in case:  in order to use examples, yes, there will be some bad language below.  You can skip down to the bottom section (the examples framed in -----).

I wouldn't necessarily say that I grew up sheltered, but I definitely was sheltered in some respects.  I did not know what it was like to grow up hungry, impoverished, or caught in a cycle of systemic racism, but I was at least vaguely aware that these situations existed.  Our home was open in different ways to different kinds of needs:  a meal, laundry, a listening ear, etc.  I heard stories of different struggles enough to understand that people are not always in bad situations because of poor choices and that they at the very least were not "bad people" because they happened to be in some kind of need.  However, I would certainly say that I was sheltered to the extent that I did not fully understand the major problems of the world in the same visceral sense and was content to worry about being a middle schooler or otherwise cope with being diagnosed with Crohn's at twelve. 

Naturally, then, as I grew and learned new experiences, there were differences in how I thought about many things.  I met different people.  I listened to different ideas.  I exposed myself to new perspectives.  And my worldview expanded with it.  Where my ideas needed changing, they changed; where my ideas were in line with new evidence, they grew stronger; and several murky grey areas that weren't so clear cut developed further thinking still. 

What I'd like to discuss today is something comparatively minor, but still fun to track its progression:  between some of that sheltering and particularly growing up in the glass house of a preacher's family, I have had several particular mindsets about swearing. In sequential order, they are as follows:   

-----

"It's just, well, bad."
This was the early phase, where I had to ask what each word meant and accepted that they were words not to be used.  This was certainly still a part of growing up in the sense that I accepted what I was told--still asking questions, but accepting the concept all the same.  I would say that this expanded to the point where even related words were also tainted, where if I knew it was implied by picking a related word it was still bad enough since the intent was there.  Each time I heard them, then, there was that immediate "Oooooooh!" that followed in my head. 

"It shows a lack of intelligence."
At this point, I accepted that other people used bad words, stifling down the urge to point out it was a bad word.  At most, I pulled a face when someone swore profusely around me, but the shock had worn off.  But I still judged them for it.  These people only used these words clearly because they didn't have anything better to say or lacked the vocabulary to adequately explain themselves.  At this point, related words or words that sounded close substituted for any actual swearword.  

"Only when I really need to."
Sometimes when you stub your toe, "fuck" really is the best word to express what you are feeling in that moment.  "Oh, poop," is not the right thing to say when something is flying immediately at your head.  "Phooey," does not capture the sentiment of a can of paint spilled in your car's interior.

I found that when I was experiencing something jarring, painful, or particularly frustrating that it was cathartic to say something stronger.  It's like choosing the correct word when I'm writing something, that "very happy" doesn't carry the same weight as "ecstatic" or "very cold" compared to "freezing" or "very wise" compared to "sagacious."  There are connotations there that emphasize my discontent regarding the particular situation that I want to bring with me.  And even if it is "unsophisticated" to swear, pain and frustration are things that united us all in the human experience, that we can all understand--why try to pretty it up to be more than what it is?  

"...Or when it's funny."
Starting to swear, then, brought me into many situations where no one expected me to swear.  This made a punchline in and of itself into different jokes and situations, where it caught people off-guard in fun kinds of ways.  I'd refer to the guy who cut me off as "some ass-hat."  Someone would apologize for swearing, and I would tell them to "watch their fuckin' mouth."  I was also aware at this point that overusing something would diminish some of the joke and therefor some of the power of the words themselves, so these were still strategic in terms of with whom and when I said them.

Sailor Status
I can fucking say whatever the fuck I want.  I learned not to give a damn--if something was shitty, I called it shitty.  I stopped being afraid of these words.  There is still a time and a place where they are not appropriate, but in the comfort of my own home and those I was most comfortable with, I can say whatever the fuck I want.  And I did.  And there were parts that were empowering.  I was choosing to express myself in strong language because I had strong feelings.  They still brought some of that weight with them, that what I was saying was important to me on some level or I was angry or I was relaxed.  In any case, I was no longer ruled by fear of these words--I understood finally the allure of relying more predominantly on these words.

Frickin' Frack
Now, I still worked at a summer camp or in schools or in church or in an office, so there were many situations where dropping an f-bomb was simply not an option, unless someone was bleeding profusely.  The swearing started to filter out and instead more "creative" swears started happening.  At camp, "What the monkey?" became my "What the hell?/What the fuck?"  My current favorite for an exclamation of exasperation is "Seven shades of hell."  The more shades there are, the worse it is.  So something that is "Four shades of dumb" is not as bad as a circumstance that is seven.  In doing so, I found that not swearing could then be its own comedic value, particularly around those who got used to Sailor Status.  

-----

So today, I find that I am a healthy mixture of creative swears and letting loose whatever words I need to in moments that need them, particularly when I am tired or especially upset.  I don't look down on people who choose to swear or specifically choose not to.  Some might have opted not to read after the warning at the top of the page; I respect that, too.  For me, my vocabulary opened up to a new range of things and it took some adjusting to find where I was most comfortable.  However, I make the firm distinction not to use any words that are derogatory toward a group of people, words that are intentionally hurtful regardless of how they are used.  

All words have different power and connotation; some of that power we give ourselves, some of that power is agreed upon socially.  I'm not afraid of any words themselves, but recognize that the intent, the order, and the manner that they are spoken will have power.  I can only hope that once that particular sentence has been let out that it was interpreted the way I had intended and be gracious to the other party's feelings on those instances where it was not.  It is so easy today to take a text or a comment and infer something else into it, possibly forgetting that the person on the other end may not know you well enough to guess what your particular inflections were when you said this in your head.  

Weigh your words carefully, when you're present with people and even more so when you are not.  I know a handful of persons that come off as callous jerks on Facebook because they do not consider how they have placed their words.  Whenever I am editing something, I give it a bit of time to "cool" before I come back in with a fresher set of eyes.  I always know what I intended to write after I just finish writing it, but coming back I am more open to acknowledge basic errors and possible places where my wording could be misconstrued--this has also stopped me from pressing send when I had a knee-jerk reaction to response, that I chose not to perpetuate an unproductive conversation (where the other party in question was only interested in being right rather than discussion).  

Whatever words you choose to use, remember to be kind to one another.  This requires apologizing and considering others' feeling seriously even if you have hurt them unintentionally.  Consider the context of other people in what you are saying but not to the point where you are no longer expressing yourself authentically.  It's a balancing act that will only get better with practice.  Express yourself and what you are feeling in a way that best meets your needs and, if applicable, in a form that will best meet your need to be understood.

Perspectives and Baggage

Since I have officially confirmed with my two main doctor contacts at the Mayo Clinic in Rochester, MN, and have also confirmed my time off through work, I have switched gears now to planning out the practicalities of travel--this is probably my seventh-ish trip out there.  This week, though, I've found that making an announcement like this had lead to an interesting range of reactions including (but not limited to) the following:

• "Are you getting surgery that week?"
• A long, sad "oooooh."
• "Is it that bad?"
• "Oh, that sounds good."
• "...what does that mean?"

I especially appreciate the earnestness of that last question, a very honest response asking directly how they are supposed to respond rather than trying to guess.   

So here's the thing--I look at this trip as just another round of doctor's appointments, potential tests and the like.  This is the next logical step in my care, where we have exhausted a significant portion of the options here and thus my concern is being escalated to the next level.  All procedural.  

There is a significant difference, however.  See, when I started coming up to Mayos, my father did something simple but very clever:  he asked what I might want to do along the way.  So far, we've gone to the Mall of America a couple of times and we took a Duck ride once at the Wisconsin Dells on our way northwest.  We always get sushi the night before bloodwork because there were specific fasting rules that exclude a lot of everything else.  We get Caribou Coffee after said bloodwork or the first doctor's appointment, whichever the case may be.  We wander down to the Barnes & Nobel that is set up in an old theatre.  We check out the game store or the Scandinavian store while we're killing time between appointments.  We go to see a movie the night before surgery.  There are certain places that we plan to go out to eat, like getting a burger at Newts.  We have made traditions.  

It is a damned inconvenience to drop everything and drive six hours away for a couple of doctors appointments, unsure of what tests they may or may not order until we get there and talk to them, but I'm looking forward to these built traditions.  That small frameshift took the Mayos experience from a chore to something that I'm excited about.  

That's what comes to mind for me when I think about Mayos.  There are vacation elements that I appreciate, shushing down the parts of my brain that try to remind me that I will be poked and prodded in some rather uncomfortable ways or otherwise that I might receive some news I might not want to hear.  

Through the reactions I have met, though, I've been thinking a lot about what kind of weight others bring with them upon thinking about the Mayo Clinic.  

My brother and I had a discussion about it specifically the other day.  To him, Mayos is this wonderful ideal.  We talk about what progress we've made on my case and highlight what parts of tradition we fulfilled that day.  He has never been with us, a sturdy part of the "holding down the fort" force.  There are times when it occurs to him that maybe we should just go back there whenever we're any kind of uncertain, that it is a Mecca of sorts, finished with a glossy veneer. 

I see why he thinks that, how we speak about it and the different places that we like to go to.  But Mayos isn't the place you go to for a cold--it is that fresh vantage point when you're exhausted other options or are officially "weird."  And, yes, I embrace that I am the latter, in a few senses of the word.  That I am going back there isn't great, that there are symptoms that my doctor and I need additional assistance with because they are not responding fully to what we have done to this point.  If one must seek help, though, we are going to a good place to get it.  I would never promise that Mayos always has the solution that you need--I have left disappointed before, a couple years back with some issues that linger--but they are a well-oiled machine, scheduling in appointments with multiple doctors from different disciplines (I'm getting surgical and medical consultation specifically, but a trip could certainly span over more) and tests all in the same week.  You will at least walk out knowing more.

Andy has an entirely different perspective about Mayos.  As of now, he is not joining me on this particular visit.  That is not to say that he has not asked me repeatedly if I was sure.  We've had many, many long talks about it.  I pushed instead for Andy to go to Choir School this week, that this was where he needed to spend that time off (as he runs into similar restrictions that I have).  The last couple months at work have been a struggle, to put it mildly, and I have been thoroughly concerned on the strain it has set on him.  For his spiritual and emotional well-being, Andy needed to be immersed in music, a community that has loved on him since his youth, and thoroughly separated from work--and sooner rather than later.  My father or my brother or possibly both have already volunteered to go up with me, so I would not be going alone in any case.  

And there's another reason:  for Andy, Mayos will always be the place that he nearly lost his wife.  He was with me when the original surgery fell apart, then he had to return home to keep working and make sure that I had a home to come back to and then also to keep our insurance through work.  He drove back, then,  a few days later at dangerous speeds when they thought I might have a pulmonary embolism, on top of all else.  Andy sees very little of my optimism at the moment, this kind of fear residing somewhere far past logic.  I am expecting sitting in a wait room and going through some uncomfortable tests; in Andy's heart of hearts, he wonders whether this will be the time I don't make it home. 

Now, someone might be thinking that it might be a good idea to bring Andy on this less-threatening kind of trip and celebrate in the traditions and new memories to overwrite some of the old.  Sure, exposure therapy can work really well, but that stress on top of not having Choir School Time  for another year on top of waiting longer to take a much needed break from work?   It's not that I don't want him with me, but instead this is a recognition of meeting both of our needs as well as can be expected right now with the restrictions that we have.  I will have people with me for support--and the added benefit of some catch-up time with members of my family.  Andy will be adequately distracted and be able to recover at least a little in places he sorely needs it, knowing at the same time he'd still drop his schedule to go with me if I asked him to.  This is a dreadfully unfortunate situation, but these are certainly the right kinds of arguments to be in with your spouse, ultimately debating the best way to serve the other.  

I can't promise that it's always that way--dishes pile in the sink or someone forgot to finish out a chore the other needed or whatever else--but balancing out my health and Andy's health together has a way of stripping out a lot of unnecessary pieces.  We've lost some elements that we want to get back--most notably practicing music and time with friends--but the focus has had to be on multifaceted front of self-care.  

I don't really know how other people feel about Mayos when I talk about it or when I mention some symptoms so flippantly, because I cannot fully understand the emotional and historical baggage that someone has brought with them, for this situation and for others.  The reading of a poem, a line from a play, a lyric from a song changes based on what the audience brings into it.  A comment that you don't feel is offensive at all suddenly takes on a new significance that the speaker never intended.  Our experiences help us frame how we see and interpret the world. 

I'm not specifically saying that I need you to approach me or even Andy specifically with soft hands regarding Mayos, my health, etc. but instead I would encourage us all to be vocal about those different invisible weights and connotations when we need to be, either asking for clarification from someone else or stating your own concerns when needed.  They're always there, and no one knows about yours until you say something. 

An Update

So, there's been a lot of shuffling happening, but it seems like all of the major pieces are now officially in line:

I cannot go to choir school this year.  I simply do not have enough time off.  Instead, I have to use this time to take a week and head up to the Mayo Clinic in Rochester, MN, the week of July 31st.  My doctor in town has officially recognized that we need more help in my case (which I am grateful that he recognizes this when necessary).  These steps will hopefully result in a plan for me, whether we're altering our treatment plan with medication changes, surgery, or something else.

What this means is that I must sacrifice my self-care time for emotional/spiritual wellbeing for physical self-care time, which is messed up.  

Honestly, I don't know how I feel at this point because I'm intentionally ignoring that side of things.  The only certain part I recognize is regret--I was wholly looking forward to choir school.  This was among many of the choices that I wish I did not have to make for the sake of my health.  Right now, I'm staying busy by arranging components at work, aligning other obligations, planning my packing list, tending to small projects at home, implementing a new workout routine, and otherwise continuing on whatever routine I can find.  

In chemistry, there is a process called titration (or titrimetry).  When trying to find the particular concentration of a certain part of a solution, a reagent is slowly introduced into the solution.  Once the solution has turned a certain color, then how much of that particular chemical per the volume is recorded, informing the experimenter a great deal about the specifics in that solution.  This can be a tedious process, adding in drops at a time to find the precise amount where the substance changed to the correct color.  In high school, we all seemed to stumble onto the give-the-nozzle-one-full-quick-turn method that brought a controlled amount without the agonizing slowness of drops at a time.  I mention this because a similar quick turn of the nozzle, moderate doses at a time, seems to be my current method for dealing with the emotional component.  Lots of small doses over time, allowing a wave to come in, acknowledge it, and let is pass through.  It's not enough that I have a whole picture yet, but I'm finding it is best to process things in doses at the moment.

We're making the right steps.  I hope we will have a plan soon.  And there isn't much else to do in the meanwhile except to carry on.