Hospital Aventures

I figured that since I can't sleep again, I would use the time to talk about some of the things that happened in the hospital. I kind of wish I had found the app for this a few days ago so I could have better killed time in the hospital but better late than never. I'll do my best to create a semblance of a narrative but considering the amount of medication I was under the influence of, there may be some blanks. 

I started getting a touch nervous for the procedure while waiting in the hallway outside the angiogram room. I was sitting with my mom as equipment rolled by, and it was only then that I realized this was a bigger deal than I had made it out to be in my head. It started off with an ultrasound machine but it was the ventilator that made things real. I had never given much thought to what it meant to be under but at that moment, it stopped being no big deal. As luck would have it, the anesthesiologist decided that it would be more beneficial to do a spinal. At the time, I had no idea what that meant and when I asked, it still wasn't that clear. Soon enough it became evident that it was another name for an epidural. I had to lean forward while some guy (I assume he was a resident) held me still. The doctor apologized that he didn't have a pretty girl to hold me but I told him that if this was going to fix my back, everyone in the room was beautiful (I also mentioned that if I cried, he was supposed to rub my head but it didn't come to that). Before I lost full feeling in my legs, I rolled over and that's the last thing that I remember. 

Before the anesthesiologist stuck my back (but while the resident was putting in my IVs), the 2 doctors that were going to perform the procedure came to talk with me. They explained the risks and what they were going to do. The reason for the second doctor was because he was an expert on RFA for bone and it turned out they would be burning a lot of bone. When I asked about the concern of burning the skin, they acknowledged that it was a possibility but that they would use ice to try to keep the skin as cool as possible. After they were all done, I was told the actual time I would be out would be no more than 20-30 minutes and we were getting started at 1:30pm. According to my mom, it wasn't long before they sent someone out for more ice but it seemed to do the trick. I am burn free and won't be requiring a skin graft (yeah, that's how bad the burns would have been). 

Note: It is now 6:15am and due to pain I have had to take an oxy to try and manage the pain. While I hope to catch it all when I edit, I apologize if anything after or before this, is of lesser quality or confusing. While I don't get a high from the medication (or very much relief), it still has an effect on me.

The next moment that I remember is being in day recovery. I remember a nurse being around me but I wasn't entirely with it. I asked what time it was and she replied that it was a little after 4pm. Being the sensible gentlemen that I am, I politely replied "No it's not", followed by an explanation of why she was wrong. After being informed that I wasn't making any sense, I decided to stare up at the ceiling until I stopped seeing double while trying to figure out why that nurse insisted on being a liar. Putting that puzzle aside, I slowly regained full awareness of what was going on around me. I'm not sure what image people have of what a day recovery ward looks like but let me assure you that whatever you picture, it's more boring than that. All you do is quietly lay there while a machine takes your blood pressure every half hour. You're not able to have someone with you so you just have the choice of spying on other patients, staring at the ceiling, or sleeping. As per usual, I chose a combination of all 3. It was only when I started stretching that started noticing some things. Firstly, I noticed that my IV was in the opposite arm than when I was last awake. There was also dried blood on the old side and for some reason dry blood on the new side as well. Secondly, I noticed that I wasn't in pain. Finally my third and perhaps most obvious observation (which explains the second one) was that I had absolutely no feeling at all in the lower half of my body. Unsurprisingly, it's an incredibly strange sensation only made stranger when I was suppose to tell the nurse my levels of pain on a scale from 1-10. She didn't seem to appreciate my score of 0 but if anyone can come up with a better explanation for no sensation at all, I'd like to hear it. Because I say things like this and some people might wonder, it is very strange to encounter your own penis when you cannot feel it. There was definitely a moment of "what the hell is this" before simple logic decided to show up. By the time day recovery was closing, 6pm, I had only regained the ability to slightly bend my knees. Since I wasn't quite in a state to go home, I was shipped off to regular recovery.

I wasn't kidding about the dry blood

On my way to the second recovery, I got to see my mom for a few moments. It was at this point that I learned the nurse wasn't a liar and that it took around over 2 hours for the procedure to be completed. I also found out that I was given the same medication that killed Michael Jackson (those are seriously the exact words that my mom used, I still don't know what it was but I prefer to say it like that). Day recovery was boring, there's no denying that, but regular recovery is pretty special in its own way. When I say special though, I mean that it's exactly like day recovery but now all you can do it stare at the wall in front of you (or in my case an ice machine). Also, all the nurses in there hate you. They hate you for having to recover and would rather see you sicker or completely recovered. Either way, they hate you and they don't want you there. Unlike the previous area, this one has no closing time and you're there until you're recovered enough to go home. It was while I laid there that I found out that one of the doctors arranged for me to have a private room to stay in if I didn't feel able to go home that night. Around 7:30pm (this is a guess, I don't actually know what the time was) I was asked to try and move my legs. I was still only able to slightly bend my knees but could also slightly feel my thighs. Regardless of my incredibly limited movement and sensation, I was chastised for treating recovery like waiting area while I decided whether or not I wanted to go home. While I tried to explain that there was no deciding as I had nowhere near enough returned sensation to leave, I was told I would have to be moved up to the room that was being held for me. While this seemed infuriatingly dumb, I was told that even if I went to the room, I could leave any time I wanted. It also meant that I could finally have my parents around so it didn't seem like that bad an idea.

To further illustrate my point, the person who wheeled my bed to my room had to lift my legs for me as I switched beds. The room itself ended up being rather nice and it was equally nice to be around familiar faces again. My parents helped fill in some blanks about how long things took, what they were told by the doctors and things like that. Within a few minutes of being there, a nurse arrived to take my vitals. She asked how my pain levels were and by that point the pain was becoming rather prominent. She returned to the room a few minutes later with a small orange pill in a paper cup. Recognizing the pill, I asked the nurse what it was and she confirmed that it was dilaudid. I then had a moment of not being sure what to say or how to say it without coming off as rude. I eventually settled on "I can't take this! It says so on all of my paperwork and even on this read bracelet!" and I lifted my arm just in case she was going to call my bluff. She seemed annoyed by this mistake and left the room. She returned a few minutes later to say she couldn't find a doctor so there was nothing she could do about my pain. Thankfully, I had some forethought about something like this happening and I had packed some of my own medication and informed her that I would just take that, rather than wait. Thankfully later in the evening the problem had been remedied and she was able to help me when the pain began to get more severe. Around 9:30pm, my level of sensation and mobility had greatly increased to the point of wanting to go home. When the nurse next came by to check on me, I let her know but was promptly told that there was no way that I would be able to leave. When I explained that was told I could leave at any time, she left the room looking annoyed again. A few minutes later she came back and told me I couldn't leave today but that I could leave the following morning. What annoyed me was that she said this to me in such a way that it seemed like we were coming to some sort of compromise. Regardless, things went smoothly the following morning. I received my sad looking cold breakfast and after I was done, I was good to go home. Even though I insisted that I didn't need it, the hospital insisted on calling in a prescription for tylenol for me at my local pharmacy.

Since leaving the hospital, I stayed with my parents until Monday evening. While I likely could have managed on my own, it was much easier to rest and recuperate without having to worry about making food or any of those standard daily chores. It was also easier for my parents to not have to worry about anything like that as well. A big added bonus was that I got to be under the care of the ever watchful eye of my dog. Though it’s quite clear that since I've moved out, he now views himself as higher in the pack, it was great having him around (he seriously won’t even play with me, if I throw a toy, he will bring it back to my dad first and then my mom).

The doctors expected that things would be all sunshine and rainbows from the moment I regained feeling from the epidural but unfortunately that just hasn't been the case. The pain was rather severe once I regained feeling and in the 6 days since, that pain has only decreased slightly. I'm still left in a state that is worse off than before the procedure but I'm not too concerned yet. I appreciate the confidence of the doctors but considering how this is pretty much all uncharted territory, I'm willing to give things more time before I start to think about things not having worried. I have a follow up MRI next week and will see how things are at that point and what steps have to be taken.

What happens next?

As the hours tick down towards my procedure, it shouldn't come as a huge shock that I can’t sleep. To be honest, I’m almost always awake at this time but today seems different. I’m tired which is a change but I don’t really want to go lay in bed. While I’m out of bed, I can continue to do all the random things that I can come up with to keep my mind occupied. Once I’m in bed and trying to sleep, that’s when I my thoughts get the upper hand. Like I said though, today is different. When I turned off my xbox (with my voice because I'm cool like that), I unhooked it and packed it up. I also packed my phone charger and some clothes because I know I won't be home for a few days. That sounds more ominous than it is, I should only be at the hospital for a few hours but I'll be staying at my parents for at least a day or two to make sure I'm alright.

A lot of people that I've spoken to in the last couple days have asked me the same question, “Am I scared?”. It seems like a strange question to me. I don’t have to do anything tomorrow, what do I have to be scared of? I wonder more if people are asking my doctor that same question considering how rarely the procedure has been done (this will be #2), but I probably don’t want to know the answer. To be honest I’m really not worried, concerned, or scared shitless (their words, not mine. I wonder what they were imagining that I would have me that scared) simply because I’m going to do the same thing I've done every time I've gone into the hospital. I’m going to do walk in, smile and greet the nurses, technicians, coordinators, and doctors who I have come to know, get changed into 2 hospital gowns (one front ways and one back like I'm a cooler version of kriss kross). After that, I'll probably sign some papers and have stuff explained. Next it’ll be 2 hospital bracelets to put on (they will inevitably scratch my face at some point when I forget I have them on), have my temperature taken, have an IV inserted while they make some sort of joke related to my veins. It's at that point that I’ll kick off my shoes, lay face down on the table that is not made to have people face down on and I’ve done my part. It’s everyone else’s show after that; someone will awkwardly put the oxygen tube around my head, they’ll clean the area, talk like I’m not there and eventually I’ll go to sleep. Sometime after that, I’ll wake up, switch beds, and get moved up into the recovery ward. At that point they will reattach the heart monitor, take my temperature again and there will likely be some more pain medication. I'll probably text some people, say yes to juice and cookies, and then take a nap. So no, I’m 100% fine with how things are going to go tomorrow, it’s what comes after tomorrow that has me absolutely terrified.

If the procedure fails, I go back to this. I go back to spending time laying in my bed after I've woken up hours after I should have. Eventually I'll convince myself that I should at least lay on my couch. The sign that will convince me that I should get out of bed is that I’ll already be through half of my phone charge. If things go wrong, I know exactly what my days will be like. I know how to do this, I'm an expert at this. I'll make jokes and people will tell me that I have such a positive attitude. If things go right though, I have no idea what happens. If things go right, the entire world changes from the moment I open my eyes. People tell me that I should be happy and take things one day at a time, that the world will be my oyster (I don't even know if I like oysters). I don’t mean to sound negative but people tell people that their dead loved ones are in a better place and we all know that during that time, those words mean nothing. They’re nice words, they’re appreciated words, but at that very moment, nothing in the world is going to take their mind off of the situation at hand. I know everyone means well when they say things like that to me;in reality, it just adds to my near panicked state. When I try to put it in to words, it comes out something like this:

Imagine having a puzzle that you had spent years putting together. You loved that puzzle. Now imagine that over a period of a few years you stopped adding new pieces and instead you started to lose pieces. Only a few pieces at first but as sure as the sun rises each day, you lost another piece. At first you can still look at the image fondly and know that you made that, that you're proud of everything you put in it and of the image it displays. Except that as time goes on, it’s harder and harder to see that original image. After even longer, you don’t even recognize that image anymore. Even at that low though, you can still imagine what used to be there. As even more time ticks by, you start to see the incomplete picture as the normal image, it's unrecognizable from its former self but it is as it is and that's what you and others are used to seeing now.

Now imagine that one day when you open your eyes, things things are suppose to be different, people look at you differently. Suddenly you’re supposed to go right back to building that puzzle even though you haven’t looked for pieces in years. People will take  long looks at it and ask you what you've added to it lately. It’s understandable, why wouldn't you be putting pieces back in when you’re finally done losing them. The problem is you don’t remember what the puzzle is supposed to look like and you don't even have those lost pieces. Now you have to figure out where you would even find these new pieces because now the ones that you remember don't even look like they would fit anymore. It’s understandable at first; of course you’re going to be rusty. After a while though, it seems kind of strange that you haven’t done anything. Why wouldn't you have done something by that point, nothing is holding you back. Suddenly people can't help but wonder what you're doing if things don't look how they expected them too.

I know it's an easily defeated analogy but it's what came to mind when I tried to put it in to words.

If that makes any sense, then perhaps that will give you a glimpse into what is going through my mind. If it doesn't make any sense, then it wouldn't be the first time someone’s fears didn't make sense to others (Seriously, clowns are not scary. Pennywise and John Wayne Gacy didn't kill nearly enough people to ruin them for everyone).

This guy couldn't even chase you if he wanted to, with shoes like that

                I don’t think people realize just how much I've lost over time. It’s so easy to send well wishes and make hypothetical plans but it’s another thing all together to have to climb out of a hole so deep that sunlight doesn't even look familiar anymore (I live in a semi-basement, I legitimately don’t see direct sunlight). What am I suppose to say to someone when they want to make extravagant plans when on the inside I’m just hoping I can get back to doing things that everyone else takes for granted? If I shoot down plans, I’m being negative but how do you explain to someone that their plans sound downright impossible when all I’m wondering is how long it’s going to take me to relearn how to walk normally again. People ask me where I want to travel and all I can think about is how I want to ask them what it’s like to sleep laying on their back? What’s it’s like to sit normally? Is it true that clothes aren't suppose to hurt when you wear them? What is is like to not be in pain at all times? I'm suppose to stay positive even though I have to make sure I manage the expectations of all those around me so that I don't feel like I'm disappointing them when I'm not able to do the things they thought I should have been able to do. I’m supposed to think of what kind of fun I want to have when I don’t even know what fun feels like anymore. I don't even remember the last time anything has been fun, I've just been going through the motions. Are the things that I used to find fun still fun and it's just the depression that changed me? What if I've just changed and the things that were fun just aren't fun anymore? Do I have to relearn to do what used to be fun only to be disappointed and have to find new things? (I'll talk about his more another time) All those thoughts have me worked up and that's supposed to be fun! What about all the other parts of a normal life, where do I relearn how to wake up every day at the same time to go to work? Where do I go to get used to the very idea of working? Where do I learn to be a functional human being and contribute to society? I don’t even know how to live like a normal person, where am I supposed to relearn that?

                If that wasn't enough, I have this ever present thought weighing me down: What if it was all an excuse? What if all this time I was the reason I never achieved what I could have and only used my back as scapegoat? What if all the things my friends put up with because of my back weren't related at all and it comes through clear that I'm just a shitty person? I know it’s unlikely, improbable, idiotic and all sorts of other synonyms for stupid, but that doesn't make it any less of a possibility in my mind. If it’s not the case, what if I've fallen too far down that hole to see sunlight again (I've seen the ring, I can’t pull off long hair in my face)? What if what’s been done can never truly be undone? What questions should I even be trying to answer first?

                I’m going to go lay in bed now. The longer I write, the more things have degraded into a series of unanswerable questions that simply add to my already seemingly insurmountable hole. I can’t answer them now and I don’t even know if I’ll be able to answer them when I wake up tomorrow. I just know that once I open my eyes and I’m better, I’m going to have to figure out what I am supposed to do next.

***

Bonus Fun Fact: It's been pointed out to me that I use humor as a coping mechanism which is quite evident through my use of bracketed jokes in this piece. You can tell how stressed by noticing their frequent use. I'll address this more another time.

Where do I start?

With the coming procedure that will hopefully put me on the road to recovery, I thought it would be good to start things off by sharing how things have been the past few years. To various degrees, I've been open about my experiences but obvious different people have heard different parts. For the first time, I thought I would do my best to describe how everything has been and what I've been through in this time. I've tried to write this a few times but  found that each time I would end up rambling and be all over the place. It turns out trying to open the flood gates on years of experiences in one piece is exactly as difficult as it sounds. I’ll do my best to maintain a semblance of organisation and logic but that will likely lead to things being a touch on the reserved side rather than letting it become a rant. If there’s anything that I write that interested you and you would like to know more, you’re more than welcome to ask me. I'll also apologize in advance that this is very much on the long side, I had a lot to cover.

The first time that I noticed that something wasn't quite right with my back was April or May 2005, at the final volleyball tournament of my second year of cegep. At some point during the day, I remember diving for a ball in one of the rare times that I was on the court in the back row. As soon as I got up, I noticed that something didn't quite feel right but, as was often the case, I didn't think much of it. I mentioned it to my trainer after the game and she suggested some stretches. I had all but forgotten about it only to notice it again a few weeks later while playing again and a congratulatory ass slap felt like I had been stabbed (I was playing in a mixed volleyball tournament, and it was a girl that did it yet it was inappropriate for me to do it back... damn double standards). From that point forward though, there was no going back to a point where I didn't feel any pain at all. That was the first day of pain that would continue for over 8 years.

                While there were flare-ups from time to time and a constant minor pain, it was in November 2007 where it started to present as a hindrance in my everyday life. I had been working an office job and would find myself in considerable discomfort but for the most part I was able ignore it as background pain. It was when I started working at HMV where I would be on my feet for hours that I noticed that staying on my feet for an entire shift quite painful. I had to switch my wallet from my back pocket to front and would be limping by the end of my shift. Unfortunately I was still in the mentality that it was nothing more than a nagging injury that should be ignored. Eventually though, I gave in and mentioned it to my doctor but because it wasn't debilitating level, it was brushed off to the side over time (I didn't press that it was a serious issue). From this point on, I simply tolerated the pain level and didn't think much of it.

              

                I put up with that pain until 2009 when it started to become a more front and center issue. I was having a hard time working and when I would get home at night I would end up resting in bed (My parents noticed this and ended up getting me a laptop). It was at this point that I brought the issue back up with my doctor and we started actively trying to investigate and solve the issue. I started seeing specialists, started doing osteopathy, then physiotherapy, and finally when that didn't work, I resorted to giving acupuncture a try (SPOILER ALERT: sticking needles into it didn't help). Throughout this period, I was still playing volleyball regularly at reasonably competitive level. One evening in 2010 while playing, a player from another court ran in to ours to play a ball. This was occurring behind me as I was setting up for a hit so I never saw the collision coming. The player ran directly into my back and I went down like a sack of bricks. I could hardly breathe and the pain was blinding. I ended up needing 2 other guys to help me get up and to a bench. It was 2 weeks until I played again and it was at that point I got quite the surprise. I bent down to tie my shoes which was something I had been quite good for over 2 decades but when I went to tie my left shoe, I ended up tipping over from my crouched position. When I righted myself, it happened again as soon as I put any weight on that side. Realizing that this didn't quite seem normal, I mentioned it to my doctor and he sent me to see a specialist. It turned out that in my big collision, I had partially dislocated my kneecap in the fall and because of the pain in my back, I did not notice at all. It was upon hearing that, that I realized that I might not be taking my back as seriously as I should have been. I ended up finishing the season but it was only upon viewing some footage of the finals game that I saw how bad things had gotten. I couldn't figure out at first why I was smiling in between each play. It was only upon further watching that I realized that I was in fact grimacing between each play with my hands on my back.

It only took 6 minutes from the start of the game to get to this point

                The remainder of 2010 is when things started to go downhill rather quickly. The pain was no longer a background issue but something that I dealt with at all times. Sleep became harder to come by and even when I was able to sleep, it wasn't restful. Work started to suffer as well as I became frequently late and had a hard time remaining focused for an entire day. While  we were actively still trying to diagnose and treat my back, no progress was being made. They had finally located a mass in my back, but because of my history in sports, it was being treated as if it was scar tissue from a muscle tear. Physiotherapy wasn't helpful and if anything, was making it more painful. Medications no matter how strong, were having no effect at all on the pain.

                Upon moving out in January of 2011, my situation would start reaching its lowest low. In a 5 day work week, I would be late 4 times and would call in sick the remaining day (usually in a random order). Even when at work, I was hardly able to get anything done as I sitting at my desk was torturous. My life outside of work consisted almost entirely of resting in bed and only occasionally was I able to make it out, and even then I would pay for it physically. At the same time, I was also trying to balance going to Concordia part time after work. In late September of that year, I finally admitted that I was losing the battle and decided that going on short term disability and dropping my classes would be in my best interest. At the time, I truly believed that the 17 weeks that I had off were going to be more than enough. I imagined that it would take a month or two before my back was completely taken care of and then I would just spend the remaining time at the gym rehabbing my body; unfortunately, I couldn't have been more wrong.

                Short term disability soon became long term disability, 17 weeks soon become 1 year and 1 year quickly became 2. I've  been on disability 2 years and 2 months as of this 5 days ago. It didn't take very long to lose track of time. The only days I had to concern myself with were when I had doctor appointments. I saw doctor after doctor who would try to figure out what was wrong only to shrug their shoulders when they couldn't find an answer. I came to loath the phrase “I've never seen anything like this before,” rather quickly. The diagnosis continued to be scar tissue even though countless doctors said that it did not make any sense for these issues to be caused by scar tissue. It was only by chance that I had another MRI and the doctor who reviewed the images hadn't seen my history of playing sports. I received an email on November 20^th, 2012 from my doctor informing me that the radiologist believed that it was most likely a tumor. While this was a rather startling email to receive, it was also to inform me that I would be sent for another MRI right away to get a better image. This was finally the break in things that would get the ball truly rolling.

The next few months were filled with many more doctors and finally a biopsy that confirmed that the issue was in fact a haemangioma (a vascular malformation). From there, a first treatment was tried and failed but now I am days away from another type of procedure. This treatment is known as Radio Frequency Ablation and while regularly used for the destruction of tumors, this will only be the second time the hospital has used it for tumor located in the muscle. They've been very honest that they don’t entirely know how things will respond. The risk of damaging muscle, nerve, skin, and bone is quite real and likely to happen to a certain degree. That being said, it’s a risk that’s worth taking as far as I’m concerned.

Doctors and various specialists:

• My GP
• A neurologist
• A neurosurgeon
• 5 orthopedic surgeons
• 2 radiological interventionists
• A gastroenterologist
• A rheumatologist
• An Anesthetist with a specialty in chronic pain
• A therapist specialized in chronic pain
• 5 Physiotherapists
• An osteopath
• 2 acupuncturists

Scans and diagnostic that I've tried:

• 7 MRIs
• Several Xrays
• A CT
• A nuclear bone scan
• An EMG
• Multiple blood tests
• A Small bowel follow-through
• A colonoscopy
• 2 ultrasounds
• A biopsy

The various injection treatments that I have endured

• An unguided cortisone injection (done by eye)
• A CT guided cortisone injection
• 2 ultrasound guided sclerotherapy sessions
• A CT guided sclerotherapy sessions

After this many years, I don't remember all the different medications I've taken but I'll try my best to name a few or at least what type they were but I'm sure I'm forgetting plenty.

The drugs (in no particular order):

• Tylenol
• Tylenol arthritis
• Tylenol slow release
• Advil
• 5 types of anti-inflammatory pills
• 2 types of muscle relaxants
• Neurontin
• Lyrica
• Dilaudid
• Oxycodone
• Fentanyl
• Nortriptyline
• Effexor
• Pantropazol

                One thing that I have left out of this entry is talk of my battle with depression. I figured that that mental and emotional side of all of this deserved some attention of its own. When I've tried writing about it, it ends up being a little overwhelming with trying to express the emotional ups and downs. While the physical side was tough, the mental strain of the past 2 years has truly been one of the hardest things to deal with. I'll try to work on putting it in to words but for now, this gives a general enough timeline and idea of what the past years have been like. I will try and touch on certain parts, such as the 2 years of disability, more thoroughly at a later date; most likely when I am looking back at it rather than still going through it.