My Pre-Surgery Shower: The Melvin Party!

I don't know how to rate the success of a pre-surgery shower, necessarily, but I am happy to say that I feel it was a success.  For those of you that were unable to make it, I've got some pictures down at the bottom.

I'm still ridiculously proud of this game I made.

The party met a few needs for me, all in one step.  Immediately, there were words of encouragement and the prayers and well-wishes of many.  It is still difficult for me to ask for help sometimes, especially where I need emotional support--the party itself was a public ask for help in a way that safe/easier and even fun.  I also had many opportunities to address questions about taking care of an ostomy, what the surgery was for, how we ended up at this point, what that was going to mean for my life after, and others, which meets a need to be understood, allowing a welcoming space for those questions people might be afraid to voice otherwise and that I might feel I need an invitation to launch into.  I also had to sit down and really think about what kind of help we were going to need, from the practical things like cooking a meal to less obvious things like help around the house and entertainment.  

Additionally, I felt that I was also helping my help.  I cannot say how many times I've heard the well-meaning invitation "We should hang out sometime."  Sometimes, it's a cop-out, but the majority of the time it is an earnest offer.  However, it sits out there, waiting for one party or the other to take the initiative, meaning that ultimately there is little hanging out that actually happens.  I was worried that "Just let us know if there is anything that we can do to help" would follow the same trend, where both sides were waiting for the other to move until opportunity had passed.  When helping friends move, I've noticed that there are some people that will start grabbing boxes and moving them on to the truck straight away, that are the kind of self-starters that can identify a problem and potentially how to fix it, and then there are others who wait by the door, chatting in the meanwhile, until there is some clear direction or task.  Neither one of these is inherently wrong, but my point is that some people are more intuitive in finding ways to help and others wait for a specific invitation, and I recognize that.  By providing sign-up sheets, I have made the soft ask and have people that I can call directly for certain activities, helping parties that are uncertain of how to help find a means to help and giving me a better idea of how to reach out to different persons, particularly that they have given me permission.  This also helps focus people into different ways that they can help who weren't able to make it but could see what kinds of sign-ups there are.  The self-starters will still find their own way to help in ways I hadn't thought to ask for, but between the ideas put out there and the thought that I had to put into for my own planning, we're much more focused to the help we'll need and grateful for those who are willing to give it.

As promised, here are some of those pictures from the party itself.  Thank you to all of those who came, those who wanted to be there, and those who have offered to help in other ways.  

Education corner!

Sign-up central

It made me ridiculously happy to see a bunch of people coloring pages of intestines and bacteria. 

LOVE my Biology Coloring books.

Had a couple of people try the Photo "Op" area. 

And, yes, we figured Andy's beard needed a hat, too.

Okay, this last one has a bit of a story to it.  I was on some level of painkillers.  I turned to the other folks in the room and it was important to me in that moment to describe EXACTLY how I was feeling:  "I feel like a sheet cake," I announced.  This was met with some confusion.  I then when on to explain that I felt vast but not deep, dense but not too thick.  I could even specify that I was a vanilla sheet cake.  Now it has become a joke with my family, where they check in to see if the medication has kicked in.  They ask, "Sheet cake?"  I give them a glassy stare:  "Eeeeeeeyup."

Party Balance

When playing Dungeons and Dragons or any kind of game with friends, it is important to properly balance strengths to make sure that you have different needs represented.  If you have everyone in your team as the powerhouse fighter, who is going to take care of healing the party after someone has been hurt?  If everyone is focused on healing, who is considering the intelligent solution out of this mess?  Who can take damage for those that are focused on finding a solution if everyone is looking around them at the same time?  Or for a non-nerdy reference, if you only play a game of soccer with forwards, then everyone is lost if the opposing team breaks past the line and takes on the goal alone.  

This is the concept of Party Balance, making sure that you have bodies covering different needs for the strength of the group as a whole.  I've realized recently that I've been following a similar strategy when managing my health appointments.

Firstly, I don't have a group with me to every appointment, more so the kinds of appointments that involve a lot of detail and/or big decisions rather than the simple kind of check-ups.  It has been essential to have another set of ears at important, condensed Mayo appointments where we are considering significant changes to my care.  

Below I have outlined some of the different character types, specifying what they bring to the table and some potential things to look out for.

The Compassionate Presence

Upside:  This is the person that is there primarily for emotional support, present with kind words, reassuring smiles, and hugs before you even realized that you needed them.  This person is there to hold your hand and make the room feel less oppressive, that everything else might just be alright.  

Potential Pitfalls:  It is possible that this character type can be so invested in supporting you that they might forget to listen to the conversation fully.  Sometimes, too, a more practical answer is needed instead of concern in certain moments.  

The Insider

Upside:  This person knows the medical field in some capacity.  They know how to speak in the doctor's lingo and ask questions there are relevant to understand more about the situation, able to explain some elements in more detail after the fact.  

Potential Pitfalls:  It is possible to focus too much on the semantics and the specifics that other problems and other questions are missed--assumptions about general procedures are made without clarification.  Additionally, the conversation could veer off into shop talk.

The Veteran

Upside:  They are able to really understand what you are going through because they have been there themselves, compassion through identification.  They are also able to ask the kinds of questions that only someone that has been through it would know to ask.  

Potential Pitfalls:  The Veteran has some idea of what is happening, but that doesn't mean that your situation is going to play out exactly the same way--if this person can only see your situation as a repeat of their situation, then there could be some misinformation or unnecessary confusion, possibly also taking over the conversation.

The Bulldog

Upside:  This person is going to make sure that your needs are met.  Ready for a round of pain meds?  They're ready to stare down the nurse's station.  Feel like your doctor is ignoring you?  They're making sure the doctor knows that this interaction is not going to continue that way.

Potential Pitfalls:  If the Bulldog does not have a direction, that means that they will guess at one; this could be great, if they preempt a problem, or really frustrating if they make one.  

The Distraction

Upside:  If you are needing to consider your dream team to come into the room with you, something big is going down, and it is nice to have someone there to help pull you out of that harsh reality, even for a moment or two, to find a space to breathe and think about something else.

Potential Pitfalls:  If the Distraction is so focused on keeping you distracted that you miss important information or don't take the appropriate time to process, then you are officially distracted to the point of avoidance, which is also not healthy.  

The Freshman

Upside:  The Freshman asks the kind of questions that everyone else so inundated with the situation forgets to ask.  They help bring components into question that everyone else had just assumed because "this is the way things are" and can be questions that can reveal that this is not, in fact, the way things are or that they could be better.  I'm going to call a specific variant of this out by name:  my father-in-law, Mike, does a particular angle with this called "The Dumb Daddy," where he proceeds to start the conversation with "Now, I might just be a dumb daddy, but..." and then asks a very important question that hadn't yet been addressed.  Different angle with the same effect.  

Potential Pitfalls:  Picking apart ALL pieces of the conversation can get tedious and stall the rest of the conversation from happening.  For me specifically, there are some answers that I need to get, too, that I am impatient to hear:  taking over the conversation entirely is not okay.

Just be clear, people can embody multiple roles and all bodies that are willing to come with me are at least a little of the Compassionate Presence for being there in the first place.  This is not to say that persons cannot be even all of these things, but everyone will have some element that sings out more specifically.  For example, I have my mother (Insider, Compassionate Presence), my father (Veteran, Bulldog), and Andy (Freshman, Distraction) coming with me for this adventure up to Mayos.  See what I did there?  I managed to bring complete party balance.  I have not brought this group specifically in for these kinds of appointments before, so our dynamic in this situation hasn't been fully tested, but my group has experience in knowing how to be supportive of me.  I think we're going to do just fine.

Two weeks away now.

The Shape of a Miracle

A few weeks back, I went to see a new doctor.  A new question had popped up on one of my questionaires that I fill out, regarding whether I had had a recent dermatologist screening.  Evidently, there has been more research regarding Crohn's and a predisposition to skin cancer.  I am very proactive about my health and dutifully scheduled an appointment.  In the appointment, I asked a number of questions, some of which pertained to how to keep my skin from getting irritated with an upcoming ostomy, having started the conversation with "I have Crohn's and have been through the ringer" And he saw my scars as part of the exam. 

His response was, "Oh, I'm sure it won't come to that."  

I felt uneasy and a little upset with that response, immediately asserting that it was indeed happening and that I had a surgery date already.  He didn't know anything about my case, but assumed that he would know the outcome from a few sentences and looking at my old scars? I get a similar feeling when someone gives me the overconfident kind of medical advice (there is a difference between "have you tried/heard of this?" and "you should do X," and I am meaning the latter), but this was supposed to be a medical authority, which made it worse.  As I'm trying to describe it, I would say it is some kind of accidental gaslighting.  

In a different but similar scenario, I've had a few people tell me that they are praying for me, specifically for a total miracle.  What these people have meant in each instance is that the surgery won't even be necessary because everything has suddenly and completely been healed, whole and "normal" and healthy.  I have been struggling with finding wording in why this makes me feel uncomfortable.  

It's not that I think it's impossible.  I believe that God can do that--reverse all the damage and the scarring overnight.  I think it's possible.  I just don't think it's very likely.  And there is a part of me that wants to take people by the shoulders and tell them that they don't understand.  

That's not the shape of my miracle.  

What I pray for, what my idea of a miracle and the best-case-scenario would be looks more like this:  An easy, safe drive to and from Minnesota.  Things go as good as can be in the surgery itself.  While I'll be understandably sore, my hospital staff has a handle on managing my pain more or less immediately.  The hospital staff are amazed at how soon I am ready to go for a walk down the hallway.  I am able to resume bowel movements healthfully and without discomfort.  There are no itchy or tender stitches that require creative dressing for a few weeks.  There is no sign of secondary infection.  I don't resume my normal, unfortunate practice of returning to the hospital for a week after I've been out of it for a week.  This is worth repeating:  no secondary infection.  I am able to stretch out those pain medication intervals soon upon arriving home and wean off of the heavy narcotics right on to over-the-counter pain killers.  My skin does not get too angry around the ostomy site.  No secondary infection.  Seeing my doctor back home, he comments on how great I look for how recently I'd had my surgery.  I receive that bill from Mayos where I am informed of what the total charges are and how my insurance covered all of it.  Friends and family are surprised and pleased at how soon I am able to spend time with them again or how long I can hang out before needing to rest.  The bag pretty much never leaks.  Oh, and no secondary infection.

I think God can use our modern world to make miracles happen.  It may not seem like it, but this surgery will be an enormous relief in a few ways, and, as a result, on some levels I am very much looking forward to it.  Other people are welcome to pray for that "full" miracle, that everything is healthy and whole again, as though the last seven years never happened to my digestive system.  However, I am too entrenched in this reality to hope for it.  I have lived with some of these symptoms for years now, the scar tissue (which is not something that ever gets better) is so saturated around my rectum that I cannot pass something bigger than the width of a dime; this part of the body that is designed to stretch and move is stiff, narrow, and unyielding.  The Seton drains, too, are not something that I would want to keep, where even dealing with another round of MRIs and taking care of them in general is not something I want to manage anymore.  I have to set my goals and dreams toward something more easily attenable.  And I have to keep working for them.  

I don't blame anyone for wanting that "full" miracle.  Again, I think it is possible and I welcome people to hope for it.  But where I am at now, holding on to that kind of hope myself would destroy me.  

I am as proactive as I can be--definitely on the "God helps those who helps themselves" tack for how I approach my healthcare needs.  My view of normal is so skewed, and thus so is my view on an ideal situation--I remember once triumphantly telling my doctor that I only saw blood in my stool three times a week now and only figured out with his surprised stare that that still wasn't good.  In the end, I'm grateful for all of your prayers.  Thank you for those of you that can pray in the spaces I cannot stay in.  It's important to pray what's on your heart, whatever it happens to be.  I think by all of these thoughts and prayers we will find the best way we can since this means we end up covering quite a spectrum of possibility.  I sincerely hope we will all be pleasantly surprised, whatever that ends up meaning.  God willing, we'll see it soon.  

Only 28 days away.

Melvin Party Update

I've had a few people tell me with guilty eyes that they are not able to make it to the Melvin Homecoming Party on October 14th, a.k.a. the support gathering event prior to my surgery date.  

It's okay--we had a hard time finding a weekend that worked for us in the first place.  And that doesn't mean that there are not still some ways that you can help out.  Below is the list of components that will be at the Melvin Party, if you would like to get on a sign-up or contribute in one of those areas.

• I will be collecting jokes for a laugh on those low days.  
• I will be collecting suggestions for binge-watching shows on Netflix and Hulu.
• If you cannot be there to sign up for something, you can certainly still sign up for a few things.  Most notably, the check up on Andy sign-up sheet is something that anyone can sign up for, regardless of where you are in the world.  If anyone would like to be added to this list or any of the following, please let me know:
• Odd Jobs--help with the household chores that get neglected in light of all else
• Taxi duty--be a random ride for Larissa or Andy
• Come play a game with Larissa
• Come watch a movie with Larissa
• There is a meal sign-up, but I am reserving this more specifically for the event, since I'm still hammering out dates
• The aforementioned "Check in on Andy" sign up
• For those looking to bring or give items, the following are helpful
• Chicken and Stars soup (really, the best thing when you're feeling low)
• Saltines
• Sprite Zero
• Pepto Bismol
• Gas X
• Preparation H Flushable Wipes or similar products that are septic safe
• CeraVe Cleanser
• Chlorox or similar antibacterial wipes (for surfaces)
• Chocolate
• And if nothing else, helping cover those additional expenses along the way is also appreciated.  We have an option set up online if you click here.

For those of you that cannot make it, again, it's okay--your presence is still appreciated in prayers and how you love us.

For those of you who can, look forward to seeing you there!

In Case I Kick the Bucket

As we are continuing to prepare for my upcoming surgery, Andy and I have been trying to fit in as many visits and catch-up events as we can before I'll be knocked out of commission for a while.  However, some of these visits have had an unexpected side effect of a deep sense of foreboding upon departure, that looming "this could be the last time" kind of feel that I cannot seem to shake, reason aside.  

Dying is a possible result of this surgery.  It's the probability that no one wants to talk about, but it is possible.  Please, I am not looking for any kind of reassurance that it won't end that way; this is an honest statement rather than a fatalistic statement.

More than once, we have all heard this idea of "don't wait until it's too late to say something import/tell someone you love them/etc."  This might be a worn-out troupe, but sometimes cliched things are still interesting things.  I don't expect to die soon, from the surgery or otherwise, but I have been thinking a great deal about my own mortality recently.  There are things that are still worth saying.

Firstly, I did the best that I knew how to do.  Not perfect, but with good intentions.  I don't really hold on to any major regrets, except for a couple of stupid things I said/did that while I'm sure I'm the only one that remembers them, I still haven't figured out how to forgive myself completely.  I am not afraid to die--to quote the podcast Welcome to Nightvale, "Death is only the end if you assume the story is about you."  The world will continue to carry on without me.  Everyone still here will find their new normal in time, and I hope they would be surrounded by all kinds of loving support as they find it.  My mark on the world might have been shorter than I would have liked, but as significant as it was meant to be. 

If I am around longer, well, I'll see what more I can do.

There are too many people to mention by name, and yet, I would not want to leave anything to chance by assuming that everyone already knows what I would want to say.  I've treasured so many of you all.  Rather than write an essay that I can never fully complete (and otherwise hold up this blog post indefinitely), I would rather renew a commitment I made to myself some time back.  

There are thoughts that pop into my head unbidden, but I also think nice things as the day goes, simple things like "that's a lovely dress she has on" and "he has a wonderful smile" or more complex components like "this person is such a wonderful friend" or "they have no idea how much that touched me."  Reflecting that I appreciate those random comments, gratitude for help I have given, or one of those moments of "I appreciate X or Y about you."  I already think these things, so why not take that one extra step and voice them?  Sometimes, it can be a level of awkward, when people don't know how to react to a complement or were not expecting a deep moment in a casual conversation, but on the whole, I think most people enjoy those moments.

I won't say that this would fully eliminate the full list of the things left unsaid, but it will at least sway the balance in a better direction.  And the result has been very rewarding.  I don't know why we need these constant reminders to be grateful for the things and people that we have in our lives.  I don't know why we instinctively save some things for an undetermined "later" or "the right time," whether it's an excuse or conditioned training to not express emotions or whatever else.  Even in trying to commit to voicing these thoughts, it's still harder to say those important things than those simple things.  

I want to reavow myself to this honesty.  And I would encourage anyone else to give it a try.  It is a skill I want to develop further, whether the time I have left is long or short.