Mandatory Christmas Letter, 2018

And it seems that somehow--somehow--we have all made it through 2017. As of writing this, we are still alive and the world has, in fact, not ended; I cannot account for what may have happened in the meanwhile.  

As such, it so follows that we must reflect in the Peterson Christmas Letter, recapping the complexity of a year into a few, fine bullet points.  

• Andy and I are still working at Skyward.  Since around March or so, we've both been very involved in our new product coming out, which has led to all kinds of growing pains, shifting our comfort in one side to the unexplored territory of the new.  We've been vocal about places where we need to smooth the edges, and we have both been entrenched long enough now to start to see different elements enacted.  Andy has also been promoted as of January 1st to Senior Consultant--well-deserved and hard earned!
• February was the long-anticipated Norway trip!  I'm very proud of us for planning out the trip in such a way that we were still underbudget and not by putting it on a credit card.  Yay adulting!  The trip itself was a fantastic adventure, and Andy and I would certainly love to go back.  Dog sledding, Northern Lights, new foods, time together, and all kinds of good stories.  
• In March, we moved to our new place off of Ekstam Dr.  We have some lovely neighbors and furthermore have settled very comfortably into a great, new space.  It's still about six minutes from work (so we still come home for lunch).  While it was a whirlwind sorting it all out while also re-acclimating to life immediately after the trip, it was a very positive move for us.  Additionally, we started a tradition of an unpacking party rather than a big moving day, which I think everyone's backs appreciated, particularly with the free piano we acquired.
• In April, we paid off our car.  A great victory for any Millennial or actually anyone for that matter.
• We started playing Dungeons and Dragons with a few buddies online.  Andy has very much enjoyed leading the group, even if it is like herding cats sometimes.  
• As the year progressed, it was apparent that my standard of health simply wasn't at a "good enough" level.  While elements were still certainly better than they had been, our level for "good" was so skewed that it took some serious reevaluating time and a couple of sick days to at least solidify in my head that we would end up back at Mayos, one way or another.  This reshuffling meant that I missed out on Choir School this year (but thankfully Andy could still go), and did go see a couple of doctors up in Minnesota.  We made some decisions after our discussions there.
• Once we were decided, that we had exhausted all other options and wanted to pursue an ostomy on our time schedule rather than end up in an emergency situation, we spent a few months preparing.  We saved money, we bought supplies, we rearranged parts of the house and similar projects we had been putting off, we gathered our wonderful support together, and I felt, at least, that this period of time moved both slowly and quickly in the same breath.  We took this all with as much grace and humor as we could muster (and a few tears as necessary).  
• And then came the surgery itself.  This all went better than expected.  I am collectively missing about two feet of colon, and I now have a permanent colostomy that I affectionately refer to as Melvin.  Then we transition directly to recovery, which also has a habit of moving slow and fast simultaneously.  
• At the five and a half week mark, I went back to work.  So far, so good.  Frankly, I'm glad to have a set schedule again.  With a real potential for remission much more attainable than it had been before and overall lesser degree of pain, there are a few things to hope for in the coming year.

We are heading into the new year with optimism yet again, because it is our way.  Andy looks at the world as it could be, and I find projects and places to invest my energy into that keep me encouraged.  Andy and I want this to be a year toward better health for us, making strides for our physical health, of course, but also mental, emotional, spiritual, and, hell, financial as well.  I'll be trying to get back into my diet more rigorously after the holidays, but otherwise I am most interested to see how life with Melvin is going to develop over the course of this, our first permanent year together.  There will be many moments and thoughts to catalog through this process.  I've still been conditioned to concern and a flavor of paranoia, that it's hard to simply stop and feel grateful, without a lot of conscious effort, anyway.  I think that will come in time, too, when we wrap up the final pieces up from this surgery and get past the window for any possible complications.  In the meanwhile, we'll pay off Andy's student loans by the end of this new year (barring unforeseen disasters); so wonderful to feel like we're making some kind of progress, even if it is slow.  I'm hoping we'll also be able to start planning out our next big adventure, when and where it might be (at this point, still likely to be Scandinavia). 


We've made some new friends this year, we've helped a few move, we've rekindled a few relationships, and we've lost a few people.  Politics is a new flavor of messy that we don't care for, but we will continue to take these new opportunities to be vocal in our support of positive changes.  We have especially been reminded this year how loved we are by all of you, through your prayers and gifts and time while we were sorting out surgery and all else.  As we have been blessed, we hope to continue to be a blessing to others.  

Wishing you all a wonderful 2018, from our family to yours.

Melvin and Me, Part 1: Day to Day Basics of Living with an Ostomy

Morning.

Apart from the usual alarm clock or general discomfort of a full bladder, every morning also has the sound of crinkling plastic.  As soon as I start moving around, my body wakes up enough that Melvin starts to stir with a couple of morning farts, sounding like air escaping out of a balloon, sometimes; this causes some additional crinkling sound.  

Let's say it's a bag change day.  It's a good idea to get this going before breakfast, trying to decrease the likelihood of extra pooping while I'm taking care of business.

I've got all of my supplies laid out, having pulled everything together in a bin and now laying it out on the counter:  the bag itself, the part that sticks to my skin directly (waiting to be cut to the right size), powder for any oozy skin, skin protectorant, adhesive putty, a mirror to get a better angle of how components are fitting, and a trash bag to place the old appliance in.  The teal bin has a few other pieces, including a liquid deodorant (that works a little bit) and a measuring utensil, to help inform whether I need to cut the appliance to a different size.  

First, I have to pull the old appliance off, gently peeling the adhesive from my skin and exposing the bright pink swatch of large intestine.  I'll grab either some toilet paper or a couple of tissues to wipe away the excess poop from the site and put that in the bag as well.  Then, it's time to check the skin around the site, what will ultimately be covered up again to make sure that no part of said skin is breaking down at all.  If the skin is oozing or unhealthy, this could lead to trouble with the adhesive sticking which could then lead to leakage (or a full "blow-out," as I call it) and then ultimately more issues for my skin, including infection.  Any place that looks a little angry I hit first with the stoma powder, brushing off any excess, to help dry it out.  Then, I'll wipe everything down with a no-sting (a.k.a. alcohol free) swab that puts a thin layer on the top of my skin to help protect it.  I'm quite pleased at how much of a difference this can make.  

Then, my favorite part:  I get to shower without an appliance.  Our showerhead pulls off and I will wash this site directly first, but then I get to shower without worry.  I think everyone at some point has noticed streams of water pouring down from an elbow and redirected the flow down their fingertips, possibly in a game to see how long they could create a continuous trickle or make it stronger or whatever else.  On non-bag change days, I play an advanced version of this game:  position the body in such a way that water is directed away from the bag.  Now, the appliance can absolutely get wet--swimming, showering, whatever isn't an issue--but I have a fear that if it gets too wet that the adhesive might not stick as well, given some bag issues I had had in the past with my old site.  And aside from that fear, keeping a wet something against my skin underneath my clothes for a few hours as it slowly, slowly dries out is uncomfortable.  Andy came up with the brilliant idea of spraying the bag with some ScotchGuard each time (there is a layer of a fabric-type surface under the bag, so it's not just plastic against the body directly), and I think this does help though it cannot work absolutely.  So, yes, a shower where I can turn and face any direction without worrying about it is quite nice.  

After the shower, I dry off--carefully pat dry around the ostomy site--and then I go to my station.  I cut the appliance to size.  In time, I might be able to get some that are pre-cut to my size, but the ostomy site is still healing and therefore changing.  Then, I work on manipulating the putty around into a ring that fits around my site, using my best playdoh-snake-making skills.  I've taken to applying this ring directly around the stoma.  Then, I'll peel that backing off of the appliance and lay that gently on my abdomen.  Once that is securely placed, I will clip the bag to that.  

For the next few minutes, I get ready one-handed as I keep the other over the new bag site, using the warmth of my body to help the adhesive stick.  

And, ta-dah!, we have a fresh bag.  If you notice any blue in the bottom of the bag, that's a squirt of the deodorant fluid in there.  Change completed, it's time to get on with the rest of the day.  I will need a new one every three to five days, or so, assuming that there are no leaks in the meanwhile.  Everything else is pretty familiar:  drying hair, putting on clothes, makeup, accessories, and then down to breakfast.  At this point in my recovery, I'm not keen on bending over more than I have to because I'm very aware of the appliance in that moment and it can be uncomfortable; this will feel normal in time. 

Currently, there's a three-month supply pile of my different ostomy parts on the floor in the bathroom, also in need of finding a forever home, but there's something about that which feels more final to me, that knowing I will have a permanent place to put bags and adhesive putty and all else away means that I'm making room for it in my life.  That feels more final than acknowledging the plastic attached to my side, maybe because I do change that every so often.  There are points when this reality hits home hard, where I feel three shades of down that my continued care required this situation.  There are also points where it hits softly, with a gentle, "yep, that's life now" kind of flippancy.  I've only found a couple patterns as to what throws me down which path yet, but I imagine there will be enough clarity in time to hash it out more fully later.  

Where it stands now, my mood truly does fluctuate with how I'm feeling physically--understandably, given that my anxiety and depression are so linked in with my medical situation.  Now with things going reasonably well, I have the freedom to feel what I want to, which requires a different recalibration.  I'm still tired, bones-deep tired, as we continue to argue with insurance and I re-send three different documents back to HR because I have not been very lucky with reading their mind correctly the first time (and have suggested that verbage be added to the damn rules, if it's so important to be a certain way).  

I suppose things are too fresh to have something all that deep yet.  

The morning routine done, the rest of the day awaits.

When the World doesn't Fit

I've had a few things to think about with all of this time to myself of late as I continue to find that new normal.  One of the largest difficulties for me at the moment is finding the best strategy for emptying out my colostomy bag.  The bag is attached to my skin by adhesive and, I remove the whole appliance every three to five days.  This means that I empty out the bag out the end in the interim, undoing the plastic Velcro and unfolding it out, like piping the most disgusting bag of frosting out of a wide mouth.  Sometimes this means sitting on the toilet with my legs straddled out as far as they'll go to lean over and empty it into the bowl.  Other times, I've knelt on one knee (I call that "the Kapernick" in my head) or two or otherwise squatted in front of the bowl with one leg on either side to do the same. 

And I was struck by a very real truth:  toilets are not designed for me anymore.  Apart from the awkwardness of trying to find a comfortable position to empty the bag, I tend to empty it out in the front of the bowl, meaning that it doesn't always get flushed down as cleanly as anything landing in the water in the back of the bowl.  It's a simple example, perhaps, but still a strong realization that I will certainly find other ways, too, where the world is not necessarily created with my needs in mind.  And I was also then struck by the understanding that there are many, many others who experience this feeling on a larger scale.  This, then, provoked a question:  after this surgery--and even before it--do I count as disabled?

Now, I want to clarify firstly that the better phrasing is "persons with disabilities" rather than "disabled persons"--I refuse to be defined by my disease and grant the same courtesy to anyone else.  However, I have phrased the question in such a way that recognizes that common colloquial sense of the situation.  I also know that I'm no less of a person because of some of the adaptations that I will need to make.  

That aside, this is still a loaded question.  The thing is, disabilities are just as visible as race for a lot of people.  There are prejudices and ignorant comments.  But there is also community.  For example, the Deaf Community has its own vibrant culture, and it is different for those that are hard of hearing vs deaf and different still for those that were born deaf or hard of hearing vs became deaf or hard of hearing vs someone with a cochlear implants.  Not necessarily a status or social class, but a difference.  There is belonging, and I'm looking to see if I can belong.  Where are the lines?  How do I know if and where I belong?  I know three other people with ostomies, and that alone gives us a particular bond, a fraternity, a trust.  Us four hold secrets and experiences that no one else truly understands.  We stand open to each other for questions, advice, and empathy.  Closely related are those that care for people with ostomies, those that understand by proxy if not the same visceral understanding.  A community of those with a particular kind of understanding of these needs, under a label.  

Additionally, I will have specific needs.  I might need to take a few minutes out of the work day to administer a bag change, which could be awkward at times when one-on-one with a client and I must escape or even change clothes.  I have already been working through several of these conversations with myself.  It is possible that people will not choose to be understanding about this, and I already have some strategies to document these instances to let project managers know, if it becomes an issue.  My immediate managers, of course, are already in the loop and have been very supportive.  In a different job under different management, those minor absences or additional absences for different doctors' appointments could lead to being fired.  Could I have a good case if I chose to take it to court?  What are my rights underneath this label?  I've been looking into the Americans with Disabilities Act to see what's actually there and trying to understand what could apply to me.  

And even on a basic level, just how visible am I?  There is a decided scale here, where the visibility of one's disability brings reflexive levels prejudice from ignorant people.  But on the other hand, when I see someone has a cane I think to offer assistance over rough terrain because of those visual cues.  This is something that I've wrestled many times over, that I would appreciated it if people knew that I needed help before I had to ask while at the same time I appreciate not having to have my illness factor into all of my relationships except within my control.  Currently, I'm still only as visible as I want to be.  

I'm still digesting this idea, what it can mean and what it does mean as I seek to understand and define my life as it will be.  I know I will have to figure out what that means for myself, knowing that I am always growing and otherwise don't fit in any box but still looking for the right words to explain who I am.  This one is going to require some additional thinking.

Hello from the Other Side

I've been debating how and when to write a post here; don't want to put out an official good report only to rescind it a few days later and otherwise it's genuinely hard to know where to begin--time to deploy the bulleted list!

• I am home.  Arrived the Sunday afternoon after, having discharged out of the hospital last Saturday and driven to a halfway point in the Wisconsin Dells to break up the trip.  The first night out of the hospital always makes me question why I left the hospital--after the first day after surgery, it is easily the next worse; this was at least better without the stress of seven hours of driving.
• Still congratulating myself on my foresight in renting an electric lift recliner for a month.  Makes getting up much easier when that transition is tricky.  One of my favorite things to do right now is to stare at Andy with a fixed, crazed smile while rising up.  
• The surgery went better than anticipated.  We had gone in with the plan to leave as much colon as possible, and it turned out that most of it was healthy enough that they only needed to take out the last bit, which means I approximate that I have lost about two feet of my colon, collectively.  
• Since I was doing so well after surgery, we rearranged the care structure a bit, and it was just Andy and I for the first week.  I would say for him it was almost a stay-cation:  yes, he was helping me in a number of ways, but we also just had some quality time together.
• Been trying to come up with a snappy reply if I am in a situation where someone calls me an asshole, maybe along the lines of how I can't be because I had mine removed.  Haven't landed on anything there yet.  
• Still doing very well, especially with the context we had coming into it.  This is the healthiest that I've been going into a surgery in a long time, and all that preparation really did pay off.  
• We're trying to establish what the new normal is going to be.  
• Rather than languishing in recovery, I instead have to remember to not overdo anything.  My, it is strange.  
• The bruises on my arms are starting to fade, finally.  In the hospital, to reduce the chances of blood clots, I received two shots of heprin every day, into the back of my arms.  After a few days in the hospital, the backs of my arms were solid shades of purple.  
• Since I am more prone to dehydration with less colon, I need to keep a close eye on what empties out into my bag.  Preempting a loose stool day, I asked my mother to buy me some marshmallows, since historically these have helped in the past.  My mother bought both a regular bag of marshmallows and one that was candy corn flavored and shaped.  As Andy has an amusing dislike of candy corn, he had a thing or two to say about them.  A few days later, I asked him to pass me the atrocity marshmallows, and he knew exactly what I was talking about.
• Sang a bit in church the other day and noticed how my stomach muscles really are involved in singing:  on the one hand, yay that I was using right-ish form; on the other hand, ow ow ow ow ow.
• As I attempt to structure days now that encourage something that strikes a balance between activity enough to stave off boredom but not so much activity as to be overwhelming at set me back, most of what I look for now is some flavor of human contact for at least a little time every day.  
• I'm back to a general diet now, the first two weeks eliminating all fresh fruits and vegetables.  Not ready to try eating a salad yet, necessarily, but it's nice to incorporate a good variety of whatever for now, at least before I switch back into my ketogenic diet again. 
• With how the surgery went, I was brought back from recovery around three in the afternoon, I'm told, but I genuinely don't remember anything until around seven, seven-thirty that evening.  Lots and lots of sleeping.  Don't mind a bit of Versed, the medication that keeps you from forming new memories, from time to time.  The last thing I remembered was around maybe 0830 or 0900, when they were prepping me for a spinal injection to help mitigate the post surgery pain, not even the shot itself.  
• At this point, probably the most encouraging sign that things are going well is that I am already off of hard drugs, switching to regular, over-the-counter acetaminophen.  I still feel as though I'm pushing my luck by writing that.
• Still have those moments from time to time where I wonder how many things I have done for the last time.  I don't think the list will be as long as I suspect, but more in the vein of doing X without worrying about Melvin.  
• I had one surgical drain placed.  And I am pleased to say that this was taken out before we left.  I am still a little annoyed at the resident that took it out, because he assured me it would be fine in such a way that I believe he has taken these out several times but has never experienced one himself.  That sucker was deceptively long and decidedly uncomfortable to just pull out.  However, I am more pleased that I didn't have to worry about carrying for it at home or finding a local radiologist that worked with my insurance, etc.  
• I was able to graduate quickly to unassisted showers without the shower chair.  Trust me when I say that this is a luxury that most take for granted.
• On the trip coming home, there were a couple of ladies at the Wendy's we stopped at who came separately to my table while I was waiting for the rest of my crew to order and return to ask me if I was okay/needed help.  I was about four days post-op at that point and told them so, thanking them for their concern, but I must have looked like hell.
• The nurses and staff did very much appreciate the Pin the Bag on the Ostomy game.  Yes, we definitely brought it with us.  
• They DID try to give me the wrong antibiotic at first.  However, one of the plastic surgeon fellows was in the room at the moment, and not only did he see my expression but he had also heard one of my tirades about said medication.  As a result, he jumped in immediately, saying that we would get it switched and I would not be taking it.  I was grateful, and at the same time the wind had been taken out of my sails a bit, because I have that fight perfected in my head.
• I know people say and do weird things coming off of anesthesia, and I have a small fear that I will do or say something hurtful.  According to my family, all I did this time was make some faces and ask the same questions a few times.  

I am not sure how many times I have come back in, edited or added on bullet point, and left the screen.  Even with components going well, there's still a lot to process yet.  And at this point, what I have to report is good news, so why question it further?  In the future, I'm sure I'll have more to say about life with Melvin as we all make our adjustments to one another.  There will more to say, too, about the experience itself and how wonderfully supportive a great number of you have been throughout the process.  For now, however, this small dump of things is a part of how I need to reestablish this habit, as I work toward reestablishing all else again.  

Our sincere thanks to all of you, and our very real affection to you as well.  

Last One Before Surgery

I'm not sure how to form something cohesive at this point, so I think it's time for a bulleted list of various thoughts.

• Pulling something out of my ass in the will now be a real feat for me or otherwise stress how the answer literally came from nowhere.
• There have been enough comments about my new hair cut that I have started to wonder if my old one was that bad.  Not really, just playfully.
• Chicago Blackhawks v Minnesota Wild!  Would you believe tickets were a lot cheaper at the Xcel Ice Center than they were for the United Center?  Had to enjoy some poutine. 
• I have rehearsed and recited a couple of important statements to make sure that I tell my doctor regarding my care, one of which is about a medication that I will not be taking because A) my body doesn't react to it well and B) at this point I've had so many arguments about this particular medication that it's a place where I enforce my patient's rights on principle; I will not be talked into something I do not want.
• I had a friend with me for my last work onsite.  Our mutual brainmelt is captured in the following quote from supper:  "I am the master of my own bread!"
• ALSO the Oscar Mayer Wienermobile was at the hotel just next door to ours on that onsite and made me far happier than it should have.
• When I look in the mirror, I feel pretty good about myself.  I wonder how long it will take to feel that again.
• Had the opportunity to see a work buddy that I talk to online all the time in person, since we made a stop in St. Paul--shout-out to Max and Chris!
• I will not miss how my butt hurts, strategizing how to sit, and how it can go from okay to not okay in a short period of time. Looking forward to having some of that freedom back, freedom from pain ultimately.
• Picked up a new hat!
• Have officially reached the point, pretty much as soon as I got in the car, where I knew I had done everything that I can at this point. It's time to ride it out. I have been proactive. I have covered my bases. I recognize that the rest is out of my control, and there is peace in that. I can tell you with some degree of certainty exactly when I will be anxious on surgery day, but I am mostly okay leading up to it.
• At the Mall of America, fit the four of us onto the Fairly Odd Coaster and had a blast. Loved watching Andy's eyes go wide when we went into a blind drop. 
• Our first appointment with the surgeon went well.  Normally appointments with this doctor feel really rushed, as though everyone is perpetually running late, but we addressed all of our questions, and I left feeling heard, which was most important to me at this point.  I will also be his only case that day, since it has the potential to go long, depending on the state of everything once they're inside.  
• We're reading Guards! Guards! to each other on the drive. I would say Terry Pratchett was a great choice. Andy and I adore Errol.  
• Fulfilling a few of our traditions has been fun as usual, including some sushi and out to see a movie.  This year's choice:  Thor:  Ragnarok.  And it was a treat.
• Day before surgery involved a clear liquids diet.  This equates to cranky Larissa, and I reserve the right to be cranky while going through this prep process.  A whole friggin' bottle of Miralax, for starters.  Ugh.
• Have a spot on my belly marked where the ostomy nurse feels would be my best spot for the new ostomy, based on how my body creases naturally.  A blue dot placed ominously and innocently on my abdomen.
• I will also have a couple of surgical drains on the way out.  Not my favorite thing.  There's a bulb attached to a tube that goes into the potential abscess site.  This tube is stitched in place and keeps suction on the area, keeping gunk out and helping prevent infection.  This means for a time I will be scared of doorknobs, since this is less than fun to get caught on one.  
• There are a lot of variables that we just won't understand until we're on the other side, so at least at this point I'm content to wait on most of my questions--no sense in worrying about some things until we have a better idea of the state of them.  This means I feel oddly collected.  There are still points where I take a breath, "there is fear," and breathe out.  
• Entourage and support from home has been fantastic.  Thank you all for your kind words and warm thoughts.  

 And otherwise, well, I'll have more to say again soon. Surgery check-in time is officially 0600, which means the surgery is probably around 0730 or 0800.  Looking forward to seeing you all on the other side, my friends.

Excuse me while I go Cry in the Corner

We're getting into single digits, here, folks.  And I'm not going to lie--I'm wigging out a little bit.  I had been planning how I was going to start packing in increments over the week, breaking it into small, chewable pieces, and then work scheduled me for one final trip, all the way up to the day before we leave.  I quickly put all of those plans in the garbage and started up some new lists. 

On the one hand, I'm very frustrated at having to reschedule my packing plans.  When Andy and I went to spend Labor Day weekend with some of my buddies from Knox--the weekend itself was lovely, but I was also so angry that I had to re-plan all of my energy budgeting and all the logistics that I had carefully considered when our flight plans fell through.  I kept saying something along the lines of "if I had known we would end up driving, I would have packed differently," unable to let that resentment go, even as spending time with these people was a balm to my heart.  Schedule changes to me can remind me how truly out of control I am over my own body because of all of that back-planning that I need to do.  I was anxious, hurting, and frustrated.  This time, though, at least I had a week and a half worth of notice to rearrange things which is a lot and very little time in the same breath, however, I am more sensitive to these changes when I don't feel well or have, say, a massive surgery looming on the horizon.  

Then on the other hand, having a full schedule for work directly before the surgery means that I have a built-in distraction.  I will not be able to obsess unhealthfully over details or wander around as I half-start four different packing tasks.  User Group itself is always a fun kind of exhausting, leaving with pudding brain and a real need to zone out to something inane.  My onsite, too, promises to have a lot of questions and a lot of significant pieces to work through.  Between both of these, there's a side benefit that this will certainly put me in the mindset of being ready to be off of work for a little while.  

All this together means that when I was scheduled this last minute trip, I was simultaneously annoyed and very relieved.  I won't obsess about how a number of things I do will be the last time I will be able to do them ever or for a while--lie comfortably on my stomach, use certain body products, go to the gym, roll over without being careful, go swimming--and try to do anything remaining once more, making for its own kind of stress; but on the other hand, I am realizing that there are a number of things that I've already done for the last time without realizing it which is its own existential crisis.  

And of course, since I'm working on this in stretches, these thoughts were written in the theoretical, preemptive.  But now, I can add thoughts that are real and in the now.  

It's real.  And in ways I still can't really accept yet.  I know it's going to happen.  I accept that logic, but the emotional real, well, that's a completely different process.  And I don't really know what to do with it, except that I feel overwhelmed.  It makes me think about being in a car accident, where there is a harsh reality that is consuming all other kinds of thought apart from mental shouts of "that just happened.  Now what?  Now what?  What do I do?"  The anxiety in my stomach swells to ultimately push against my larynx.  

Not all surgery is traumatic, necessarily, in the sense of PTSD kind of trauma, but they can be.  Some of mine definitely have been or at least building off of the same trauma, where things throw me back to particular scenes, specific sensations, staring at the exact same spot in one of my hospital rooms while trying not to move because everything hurt, freezing in place because I'm still trying not to move as a part of that response.  This surgery decidedly puts me back into that same trauma space.  There are many reasons why I don't want to go back.  

Aaaaaaaand in the same breath I am very fortunate to be distracted this week to the point I don't even realize the week is passing.  I even have a friend with me for this particular onsite to share the load and hang out with, which is a huge comfort.  What I have noticed through even the start of this distraction was just how much I needed it--I had/have officially crossed the threshold where preparation has grown into its own swirling vortex, meaning that my coping strategy of planning is officially more harmful than helpful at this point.  One thing my therapist has suggested in some of those points, when I am swallowed into that emotion, is to disassociate from components of it.  E.g. instead of "I am in pain" or "I am feeling pain," I separate myself out:  "there is pain."  So right now, I am practicing "This is happening" rather than "this is happening to me."  It's a subtle difference in verbage but an important one.  This busy week of work and that practice both grant me space to breathe, collect myself, and find calm in the midst of everything else.  I won't stay indefinitely in that space between "me" and whatever the problem is, but with enough distance I don't become the pain, recognize that I am not the pain itself nor is it a part of who I am, just a part of the experience.  From where I'm sitting now, I have done everything that I can do, and there is freedom in that.  I am not my disease.  I have done everything I can.  And now it is time to let go of some of that control and the ownership of events.  I set the dominoes up; I don't have to make each of them fall individually.

So that means I'm pendulating violently from feeling calm to feeling overwhelmed and back again.  From maintaining a bulk of the planning to wanting nothing to do with any decisions.  From anticipation to dread.  From earnest optimism to the kind of realism that plans for the worst.  And, gosh, it's exhausting.  

That's the state of the everything, I think the best ways to help me for the next week is to spam me with fun internet memes and cat videos with the occasional heartfelt encouragement.  We'll get there.  We'll be on the other side soon. 

We're letting an old life die and welcoming a new one; these are just the growing pains in getting there.

To follow along for updates and the like, Pappa P will be updating my Caring Bridge page HERE.

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.  

What does "Strong" Mean?

[Gentle reminder, the Melvin Homecoming Party!  is October 14th.]

As I have been preparing for the surgery and the emotional weight of that situation, I have been told in a few different ways by a few different people that I am a strong person.  There's no way to say I agree without sounding egotistical on some level, but here we go anyway--there are some ways that I feel I am a strong person.

This has stirred up a few questions.  Why do I agree?  What is it that makes anyone strong?  What kinds of strong are there?  In trying to narrow it down, I've created a very basic outline below on some of the commonalities.  
-----------

Step 1:  Suffer
Something "significant" has to happen to said person--without something to overcome, what does the person have to be strong for?  This world is chaos and "significant suffering" is inevitable, that everyone will lose family members, will go through their own self-crisis, will find themselves vulnerable at some point.  However, the timing of this suffering can also be a contributing factor in the "level" of suffering--for example, Andy and I were married ten days when I went in for my first surgery, and I will only be thirty years old going into this permanent ostomy.  As another example, a child with cancer can merit different reactions to a grandparent with the same condition, though this is all suffering.  I am not interested in labeling who has it worse, but mostly I want to point out that sometimes there are factors such as age, situation, how recent other events might be, that change the frame around that suffering.

Step 2:  Endure
Survive.  Live in spite of that suffering.  Take everything a day at a time.  Keep making phone calls to arrange appointments or government official or appeal an insurance decision.  Get through the immediate reaction with all the tears and anger necessary to do so.  

Step 3:  Bounce
This is a step beyond merely surviving, going back to living.  Begin to reclaim elements of your life.  Go back to work when possible.  Continue to smile even when you feel that you shouldn't remember how.  Find ways to laugh at yourself again.  Finding this new normal, it will involve letting yourself eventually feel some joy again.  Sometimes putting on a brave face, sometimes allowing yourself to be vulnerable.

Step 4:  Continue to Endure
Sufferings are not over even when they have passed.  What happened will always be a part of you.  Grieving is not about getting back to where you were before (the suffering); grieving is about learning to carry on.  If the event itself is truly over, there are residual feelings, trauma, relationship restructuring, and even legal paperwork that need to be addressed.  Things cannot simply go back to the way they were.  And things may not necessarily be over.  Losing a loved one begets rethinking traditions and day-to-day processes.  Recovering from abuse involves constant breaking and reforming of those learned habits, working through that trauma.  Dealing with a chronic illness is a terrible roulette, wondering when bad luck is going to find you again.  Keep enduring, keep bouncing, keep going.  Embrace the new normal, and each time it changes again.  Find a way to keep smiling.  

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The best answer that I have come up with, then, as to what makes someone "stronger" than someone else is that perhaps there is a certain manner that they bounce.  The severity of the suffering is important, but not as important as the resilience of the individual.  And another question:  what does resilience look like?  

I have retained an ability to laugh and specifically to laugh at myself.  I can swing things into a positive light.  I can talk about many components openly that others cannot.  I can knuckle down to make eight different calls in one morning to sort out my healthcare needs.  I can take time to be vulnerable.  I can be there to feel with others going through hard times, too.  Is that what strength is?  Is it one thing or a combination of things or are these just "signs" of what it is?

For all this, I still haven't hammered down a good, clean definition--and I've been sitting on this post, now, for a couple of weeks.  I think that means, then, that it is time to open up this question to you all.  What are your thoughts?

One of those Unspoken Complications

With Crohn's Disease, there are some issues and complications that come with it that are pretty obvious, particularly if you've been keeping up with my blog:  pain, fatigue, nausea, bleeding, diarrhea, general gastronomic distress, to name a few.  Then, there are a few less obvious ones:  issues with my skin, depression/anxiety, eye inflammation, minor infections, fistulas, higher predisposition to certain cancers, and all kinds of other minor annoyances.  However, there are a few other factors that are less obvious still and I want to address one that I've hedged around for a while.

Every time that any woman goes into a procedure, whether it's an MRI, major surgery, or most anything else, she will meet with a particular set of questions.  Sometimes, they might ask whether I had a hysterectomy first, but then comes the question that will always be asked, in some form or another:  "Are you pregnant or is there any chance you might be pregnant?"  This is often followed by "When was the date of your last menstral period?"  And if I've not had my menstral cycle recently enough, I end up peeing in a cup anyway so they can double-check before proceeding further, sometimes meaning that I get to be hangry for another hour or two while we wait for the lab.

I've got to be mindful of that.  Potentially getting pregnant, now, when everything is still terribly unpredictable, when I need different tests and different medications, I cannot afford to have anything stop my care.  Without being in remission, Andy and I could not and cannot afford to get pregnant--we haven't been in a place to consider when or if we want to start a family.  As such, I've made sure to be cautious, to watch and make sure that I didn't get pregnant.  This has turned into a fair share of anxiety.  

And then there's the tension of what this means about intimacy in my relationship with my husband.  When I'm too tired to make dinner or too nauseous to bother putting my clothes away before curling into a sad ball on the bed, there's also not a lot of energy or any kind of want to have sex.  With the rather inflamed and scarred rectum being so close to the vagina, even when I am feeling up to something we have to proceed carefully.  This gets disheartening for both of us.  

When I realized that I was not absorbing my birth control medication well taking it orally (since I wasn't absorbing anything well), I switched to another method.  I've counted and obsessed.  And I know they're going to ask me again in 57 days and probably a couple of times before in pre-testing.  As I'm thinking through the preparations, Andy and I have had the conversation that maybe I should stop taking my birth control.  Here's why:  taking birth control increases my chances for blood clots, which I'd like to mitigate post surgery; additionally, with everything inflamed with the Seton drains, my Nuvaring has been uncomfortable, painful even, at times; and the kicker on top, I have actively been draining additional fistula gunk through the vagina, which has been more uncomfortable still.  

I was talking this over with Andy, my anxiety around getting pregnant, my thoughts about being off of the medication temporarily, and a lot of overall frustration.  Then, Andy said something that truly surprised me:  "Well, what if I did something?"  

I hadn't even thought of it as a possibility.  There are new medications for male birth control or if we wanted to go something a little stronger, vasectomies can be reversible.  He's going to talk to his doctor to see what our options are.  Andy offered to take that responsibility off of my shoulders.  Andy offered to give me one less to worry about.  I've been so very touched by his gesture.  To me, it was a moment where I knew that Andy understood that my health is something that we bear together.  

Yeah, I think I'll keep him.