Saturday, March 23, 2013

Getting Ready for Surgery

It's 2 nights before my surgery. 2 more sleeps and then they are going to alter my pancreas forever. It almost sounds like Christmas except way less exciting. Tomorrow is going to be busy so hopefully I'm not going to be too panicked. Tomorrow I have to do laundry and clean my room and get packed for the hospital, and finish my list about who needs to be communicated and remember to finally take the nail polish off of my hand. Yes, singular hand. I decided to paint one hand and then the other, but then I was doing my nails while doing laundry, so it got all wrecked so I decided it wasn't worth doing the other hand. I was going to take it off, but then I got distracted.

There are more things that I am trying to do to make this easier on me.

One of them is that I'm making my bed pretty. I bought myself a fancy pillow, but so far it is causing me pain (which I sometimes get from normal pillows too so I don't know how much is the pillow and how much is a bad few nights because it isn't like I've been anxious or stressed or anything). I also bought myself sheets that seemed to come with a warranty, which kind of makes me feel like a grown up now. I also bought a new comforter for my bed too. I figured since I live in my bed most of the time, and I'm only going to spend more time here post-surgery I deserved to make my bed a super comfortable place.

I'm also planning several trips this summer when I'm well enough to go. So, I can get pre-occupied with trying to make plans to go out to Newfoundland for a big CYC conference, possibly going to Quebec to learn French for 6 weeks (LSQ too hopefully), I'll know about that next week. Then maybe a big adventure trip to somewhere at the end of the summer. If I get to spend my summer travelling it will make me a really happy me. I've never really been anywhere, other than North America, and only got my passport last summer, so I'm intending to make the most out of having an essential travel document.

We also made a hospital plan. I wasn't really into this idea at first, but it was forced upon me, and then we figured out ways that it could be helpful. Like for me it's super helpful to have a nurse check in with me at night about how the day has gone and what questions I might have for the doctor and what I might need from my doctors so that we can make a list together for rounds in the morning. So, we put it in writing that the nurses should do that with me. Also things like I really like to check my blood sugar with my meter and not theirs because it uses less blood and it is faster. There are other things on there too, but those are the kinds of things that went on it. Just things that are little that make things more comfortable and better for me.

I also had my pre-op appointment on Friday. That was kind of scary. Also really really annoying. They did an EKG, and the nurse made me change into a gown, but have it open in the front, and then she just flung it open and left me completely exposed for the EKG. It makes me wonder why they even bother giving you a gown to be honest.

One of the things that scares me the most about this surgery is the epidural and the fact that they want to leave it in for several days. I'm terrified of this. I think it's more a symbol of everything that is going on with the surgery and it's just a tangible piece to be scared of, but I'm really scared of it. It will be okay, and I think it would be bad of me to refuse it. The anesthesiologist decided that it would be helpful to describe to me in fairly intimate detail how an epidural worked, and the structure of your spine and where in the spine the catheter goes and all of this information that made it super super real. The part of me that gains a vast amount of medical knowledge from my doctors and appreciates the time they take to teach me all of this stuff thought it was cool. The rest of me would have really appreciated not knowing all of this information until after I had had it and it was too late. It just gave me very specific things to be scared of. I've talked with a friend about it though and it seems like it is going to be uncomfortable but okay to go through with. He really didn't help my anxiety though, he said that it is a "wicked" incision. He also reiterated that hospitals do hundreds of thousands of epidurals a year for pregnancy reasons and it is okay. It's a really common thing to do. So, on Monday morning until who knows when I'm going to have some kind of freezing in my spine. I also get to have an arterial IV and possibly an IV in my neck too. He also very strongly stressed that if I wake up with an NG tube I really really really need to not pull it out. I feel this is going to be both very easy and very difficult for me. Easy because I get super nervous about how it is going to feel when the tubes come out and very difficult because I feel like it's going to be uncomfortable and I am going to want it gone. It's easy for all the tubes to get put in me. I'm paralyzed and unconscious, but it's not so easy to have to deal with them coming out. Ask my parents how ready I was to keep my chest tube for forever.

I have to figure out my knitting post-surgery still. It needs to basically be garter stitch in a very simple pattern. I'm wondering if the owl sweater is top down or bottom up. I have the yarn for it, so it may be an awesome time to get a lot of really really boring knitting out of the way. Doing a Colour Affection shawl may also be in the cards too.

It's just kind of hard right now. I keep doing things or seeing people and thinking "This is the last time I am going to see you/do this before I have surgery". I'm realizing that I'm risking a lot and going through a lot for a little bit more than a maybe. It's a lot and it is really scary. I'm getting through it though. I'm getting most of my list done. I didn't dye my hair though. I'm a bit sad about that. With help I can probably dye my hair in the hospital though. That would be memorable. That was something that I wish I had offered to do for my Bubby before she died. She always liked that my hair was fun colours and often threatened to dye hers blue. It would be fun though. I'm trying to think of ways that being stuck in the hospital can be lighter and more fun. Someone I know gets dressed up for dinner in the hospital. I'm trying to think of what versions of that would work for me. Definitely doing my nails once I'm allowed to again. Dying my hair. Knitting. Having lots of people visit and help me make my zine. Being able to decorate things. We should all bring coloured duct tape and decorate my tubing or something. There have to be things in the hospital that we can decorate. I am definitely going to have the coolest step-down unit bed space ever.

Oh! The last thing is that I get to wear my Angry Pancreas shirt to the hospital. I'm actually really excited about this. Someone somewhere on the internet, on Cafe Press or Zazzle or somewhere made a shop that sells things that say "I have an angry pancreas" and have pictures of an angry pancreas and I totally decided that I needed to have one for bad pancreas days. Mostly I only wear it at home, but I am really excited to wear it to the hospital. I'm pretty sure that no one is going to notice and they are going to make me get into a stupid gown and be naked anyway, but it will make me happy. Small things. It's the small things that are going to help me get through it, so I'm trying to find as many of them as I can.

Tuesday, March 19, 2013

The Zine Project

I got my surgery date today. I'm going to be having surgery on Monday, which isn't exactly the greatest amount of notice in the world. On the plus side though, there is way less time to be anxious about it, and I have to be focused on getting the things that I need for me done. It's good to have things be driven like that because I'm really good at procrastinating.

Today I freaked out a lot, but I did a good job asking for support from people where I needed it. I'm sure I will freak out again, but I'm feeling calmer right now, starting to have some good conversations about the carrots that I'm dangling for myself at the end of this. There are lots of things that I'm really excited about happening this summer. I've put a lot of work into thinking of ways to make this summer fun for me, so I'm really excited about all of the things that I want to do.

One of the things that came out of all of my conversations today was the idea of creating a zine based on my experiences of this surgery, as well as being in the hospital and having pancreatitis more generally. While I'm probably going to be the one doing most of the content I want my friends and family who are going to be with me while I'm in the hospital to be able to contribute to the zine as well. I know that me having surgery is going to have a big impact on the people around me, and I know it can be really hard when someone you care about is in the hospital. I also think that while it is my experience, I'm also having that experience within a community of people and the people that I have around me reflect who I am too.

I also wanted to take some time now to explain the zine and how it works here while I'm not drugged out of my mind post-surgery. This way I can print this off and people can read it even if I'm asleep or in surgery itself, or if I just don't have the energy to explain it.

So, a zine is like a home made magazine. They can be super fancy or super basic. Since I'll be in the hospital and won't have a ton of access to things like printers, this zine is going back to roots and being primarily a cut and paste zine. Some of the writing can happen on whatever computing equipment there is around and then emailed to someone who has a printer and then brought back. Or people can write in person. My plan is to bring lots of blank printer paper, maybe some drawing paper if I can get my hands on it and all my art supplies. I'm going to be bringing the backlog of magazines that I have with me to read, and they can be cut up too if people want. So there will be lots of mediums for people to play with to create with to be a part of this.

So, what goes into a zine? Really anything. Typically short stories, or anecdotes or short critical pieces. Drawings can go into zines, comics, artwork, photographs, mock ads. Pretty much anything that you want. There is typically some kind of theme that holds things together that things centre around. In this case it would be my surgery and hospital stay. So the things that people make would be things that are somehow connected to me being in the hospital. Maybe it is a note saying "Get well soon" Or maybe you want to write about the experience of sitting next to someone in a hospital bed when they are sleeping. Or, how weird it is to have tubes coming out of places that just should not have tubes in them. There are lots of options. I know I'm going to try to get pictures of my pancreas before they do the surgery and after they do the surgery. This seems to have become really important in the last 24 hours and maybe have those pictures be the covers. I also want to make a mock ad for the surgery kind of modeled after a weight loss ad. Those are the kinds of things that I'm thinking about. It's a space to be creative and express the crapiness that is having surgery and being stuck in the hospital in some kind of way that is more helpful and resilient. I seem to be nothing but a CYC through and through.

Then, after everyone makes things it all gets put together. That is exciting. Glue sticks and scissors and fun backgrounds will be involved. I should go scope out funky scrapbook paper for backgrounds. Then you have a master copy and you do what zinesters do and distribute it. I'm really excited for this. I think it is collaborative and involves people, and it's expressive, and it's something that I can pick up and put down, and that other people can be engaged in when I'm too drugged to do anything. Or we can work together on a page or something. I want people to be involved in my zine. I'm also excited about the things that I want to contribute. There should be an "About Chronic Hereditary Pancreatitis" page. Like an FAQ or something. I'm definitely getting this planned out in my head.

I really hope that other people get as excited and as into this as I am. I think it has the potential to be an absolutely amazing project. It's also making me feel less bad about the horrible hospital stay after having this kind of surgery, so that in and of itself is a good reason to get behind it. It is something that is really important to me, so I hope it will be important to the people who are important to me too. Which is really a covert way of saying something manipulative like "If you really care about me you'll make a zine with me". That's really the message I'm trying to get across here.

Saturday, March 16, 2013


I got reminded today that it has been too long since I have updated my blog, so an update is in order. So here are where things are at these days:

1) I had an ERCP at the beginning of Feb. On the first in fact. I ended up in the hospital overnight, which wasn't too horrible despite them getting my meds completely messed up. Then I very smartly left the hospital to go to school for a meeting and then landed myself in bed for the next two days, go me.

2) Still no date for my surgery, but it could probably happen pretty much any day now. I will get a whopping week to two weeks at most notice before my surgery. I'm half expecting to get a call on Monday for the week after next. I'm dreading it a bit if that is the case, but part of me is just ready to know when it will be so I can make the plans and just get it over with. I found a new thing to be anxious about though, everything that I see about GI surgery seems to necessitate bowel prep, and having never had to experience that particular *erhm* pleasure before I am less than thrilled. I don't do well with swallowing medical fluids so despite the copious advice I've received on which bowel prep to go with should it be required, I am not at all confident that this is going to go down the way the surgeon would like it to.

3) I gave my first ever peer reviewed conference presentation with my sister today. That was pretty awesome, then I presented on finding kin and building communities of disabled people who are similar to you. That went really well too. Also people seemed interested in my blog, so hi new blog readers.

4) My shoes are still hidden in some Lyrica wasteland. We are experimenting with upping my Lyrica a bit too. The first time I tried I started developing random muscle twitches, so we are trying again. My doctor eventually wants me on the max daily dose which I'm nowhere near. We'll see what happens. The random highs have stopped though which is really nice. We'll see what my body can tolerate and if it says no, so be it.

5) My meds are still a work in progress. We are doing better now though. We found an NSAID that works, and I just have to be careful that I don't give myself ulcers or internal bleeding with it, but it actually controls some of my pain which is amazing. Still experimenting with the diabetes meds and some other stuff too. We are definitely getting closer to a combination that actually hits all of the stuff going on with me which is awesome. I'd love to not be taking like 20 pills/day but if it actually helps that is the important part. I'm starting to go back to being able to take multiple pills at once again and that is exciting.

6) I'm generally doing pretty well and keeping busy. I've been sick a bit from my pancreas, but it hasn't been more severe than needing a day off school and a lot of medication at home. It's been nice to manage it myself and not need to end up in the ER.