Surgery 2: This time it's personal

It’s that time of the year again. I’ll be heading back to the hospital on Friday the 25th for another fun adventure in surgery land. To keep things fresh and interesting, this procedure will be a brand new one that hasn’t been performed here before. I’ve been told that my doctor has performed this procedure in Europe but it was never mentioned how long ago they were in Europe.

The procedure itself is going to be more or less similar to my previous one except the complete opposite. I was told that I would have a spinal block and drugged up again so it’s going to be exactly the same for me so I’ll have at least that nice level of consistency. The procedure is going to be similar in that it’s going to involve various needles and instruments but different because rather than burning the tumor, they’ll be freezing it to death. The supposed benefit of this is that with the use of a CT scan (this will be performed in CT) they can actually see the flesh that is being frozen. This means they can better limit the collateral damage while also insuring that they kill everything they intend to kill. It would be nice if the doctors had some experience to be as exact as possible but that’s the cost of being the first name on a brand new waiting list. Hopefully they practiced on a lot of steak (not a joke).

For my first surgery, I allowed myself to start running before I could walk again (figuratively, I don’t think I’ve run anywhere in a few years). As worried as I was about a lot of things, I really focused on the future and of course was let down when things didn’t quite work out. This time around I’ve mostly just ignored this whole lead up for better or for worse. I’d rather try and just take each day as it comes than get caught up in everything that comes with either success or failure. That being the case, I’m not actually in the mood to write much more as it completely goes against what I said I was going to do.

I’ll be back with fun stories from the hospital in a few days. Wish me luck… or don’t and be a dick. 

6 months

When I started this back in the December, the idea what that I could use it to keep track of how things moved forward and the progress I made towards a return to normal. I honestly did not think I would find myself 6 months later in hardly any better shape at all sitting around waiting for the phone to ring. April 11^th  (the planned date of Surgery 2: Electric Boogaloo) came and went due to some complications at the hospital. First it was getting all of the equipment and pieces, then it was getting everything approved by Health Canada. The last I heard they were working out when to schedule training for the new equipment. I can’t complain that much since I would hate to go through the entire procedure only to find out they couldn't figure out how to turn the thing on and just hoped that I wouldn't notice.

Last night I came home from watching hockey at the Bell Center and felt pretty worse for wear (losing makes everything worse). I was tired but I've learned better than to lay in bed in pain. There’s no point to it except to grow more frustrated and bored. By 3 am the pain was still getting worse, so for the first time in several months, I reached over and grabbed one of my bottles of pills hoping that I could find some relief. I finished up whatever random late night tv I had be staring at absent mindedly and made my way to bed (not before brushing and flossing, of course). After reading a bit on my phone, I noticed that my pain was actually coming down a bit. The pain was leaving my leg and was more localized in my back than usual. Rather than take that moment to let the drowsiness take over and get some sleep, I actively did the opposite. Suddenly I didn't want to be asleep, my pain was decreased and I wanted to stay awake to appreciate this rare moment of peace. Granted it was 5am at this point and my options for things to do were rather limited but still, I opted to read, to watch random videos, to do pretty much anything that wasn't sleep because it seemed like such a waste.

A few months back I was rather happy that I had managed to come off all my medications. I really viewed it as a door opening to a more healthy way of living, albeit with more alcohol. The reality of the situation was far from what I imagined it would be. While I would be lying if I said the pain didn't come down, it didn't exactly come down the way that would have been helpful. My baseline pain levels have decreased and that can make doing nothing easier but activity still sends my pain levels rocketing up in no time. Rather than being able to do more, I find myself more down than ever. I sit around feeling ok and decide to do something only to regret it almost immediately. I can no longer trust my body to give me an accurate prediction for how I’m feeling. When I was in significant pain all the time, it was actually easier to force myself to do something because I knew that pain was going to be there anyways. All of that is best case scenario at that. In reality, more often than not I’m in “recovery mode” from whatever I’ve done recently. The smallest amount of activity can haunt me for days making every subsequent action that much more difficult to do. While my head is in better places these days, my body still acts like an anchor dragging me back to my bed or couch; a constant reminder that I need to make my actions count because I’ll be paying for them for the near future. Sometimes it’s not even things I do by choice, last week I slept on my back wrong and could hardly walk the next day. The concept of doing anything during the day is almost completely foreign to me these days. Wanting to do anything requires hours of physical and mental preparation, time to test how my body is going to react that day. Usually with careful enough planning I can do what I need to do, sometimes I roll the dice and lose. It sucks to lose.

My 6 month anniversary of my procedure coincidentally coincided with my 1 year anniversary of using a cane. In that time I've learned a few things about myself and other people. Firstly, I certainly took having 2 free hands for granted. I have had to become very adept at balancing things and wedging my cane against things when I do need both my hands. Secondly, it’s really embarrassing when my cane falls. Nothing makes me more self-conscious than the loud bang when my cane hits the floor. The heads that turn to see what happened only to see a guy in his 20’s needing a cane. I know I need it and that’s life, but having attention brought to it like that, like it’s a glaring weakness, really cuts deep. That being said, I don’t mind talking about my cane because at least it’s on my terms. What’s strange is half the time people ask me about it, they ask it in a way like they’re going to catch me in some sort of lie or that I’m going to admit that I’m just guy who likes using a cane for fun. Regardless of how it’s asked, my answer is always the same “I have a tumor in my lower back that pressed on nerved that go in to my leg”. At that point, it’s more awkward for them than it is for me and I’m fine with that. Thirdly, the most important lesson that I've learned is that PEOPLE DO NOT GIVE A SHIT ABOUT A 28 YEAR OLD WITH A CANE. In the last year, I can count the number of people who have given up a designated seat for me on a bus or metro. I would need the hands of all of my friends to count the number of times I've been cut off, bumped out of the way, or ignored while someone else takes one of these seats in front of me. I've even had people give me understanding looks when I look frustrated that someone took a seat in front of me, all while they themselves sit in seats with no intention of getting up. These days I know better than to expect anything, my only hope is that at least the odd few person feels bad about not getting up but waiting too long that they think it would be awkward if they did. That might be a stretch but a guy can dream.

I sure am getting tired of this so here's a generic "everything will get better" song...

A Series of Fortunate Events

For the past few weeks, I've been trying to write. Actually, I've been doing much better than just trying, every time that I've sat down to do it, I do. Unfortunately, I’m never happy with what I end up writing. I want to pretend like it’s an issue of quality but in reality it’s all about not feeling comfortable knowing that people will read it. I've been trying to write about what depression has been for me, how it was never like how I thought it was (I wasn't actually sad… who’da thunk it). I've decided that rather than end up with a whole bunch of stuff that I’m unhappy with, I would go about this a different way. Over the past month and a bit, I've experienced some firsts and some milestones that I’m quite happy with. I wrote these pieces at different periods of time but decided to keep them all together like this.

This was written roughly the third week of January

I feel like shit today. I’m happy I feel like shit today, because I’m the reason for it. Today is the first day that I have gone without a fentanyl patch since last March. I've been working on coming off of fentanyl for a few weeks now slowly reducing it over time and yesterday I took off my patch and didn't put a new one on. For those not familiar with fentanyl (if you've spoken to me in the past few months, you’ve heard this), it was explained to by my pharmacist like this: it takes 30mg of codeine to equal 1mg of morphine, it takes 5mg of morphine to equal 1mg of dilaudid, and finally it takes 100mg of dilaudid to equal 1mg of fentanyl. Since March, I've worn a patch, not unlike a nicotine patch, that has delivered a constant dose of this medication. The past couple of weeks have consisted of all the fun of having the flu but without the bad side of having the flu (this is possibly the worst sentence I have ever written and I will keep it for that reason). I’ve had cold sweats, which are much worse when it’s -40 and you live in a basement, I've had full body aches, headaches, been nauseated and pretty much all around feeling crappy.  That being said, there’s something satisfying about being in control of how I feel, even if that means feeling terrible.

Of course, this certainly isn't the first time I've felt crappy due to coming off of medication. In fact, I’m still getting over the last medication I was on. While I knew ahead of time, because of what I had heard from friends, I couldn't believe just how terrible I felt when I stopped taking the main anti-depressant that I was on. I had been on Effexor since May and during that time I had achieved a peak dose of 225mg a day. While at first this seemed to help, it wasn’t long until I started dealing with some rather unpleasant side effects. After speaking with my doctor, we decided that the best course of action was to taper off the Effexor and begin taking a new medication in its place. I learned later on that the recommended tapering of this medication is 10mg a week but for whatever reason, my doctor had be tapering 37.5mg every 4 days (I have to assume it’s because he knows I’m a stone cold badass…. or the idea of me suffering amuses him). While the side effects while being on the medication were tough, they were nothing compared to what it was like coming off them. The main issue was something affectionately known as "brain zaps," "brain shocks," "brain shivers," "brain pulse-waves," "head shocks," "pulses," "flickers," or "cranial zings" (had I known I could have called them zings, maybe things would have been more fun). These zings felt like I was getting an electric shock right in my brain. This shock would lead to a sense of complete disorientation similar to vertigo but worse. Other times when it would get more severe, I would feel that shock and then be able to feel the charge travel down in to my extremities and then bounce back up, sometimes several times in a row. Unfortunately it did not take much to trigger these episodes, while they happened regularly on their own, all it took was a little bit of movement on my part to trigger even more. It didn't just take real movement either, if I was playing video games, the movement  on my television was enough to trigger them. Not only was there nothing that could be done about these symptoms, they’re not even understood by medical science. Less than reassuring but at the very least, doctors acknowledge that it exists. Of course that wasn't the only fun that I got to deal with, you can mix in a healthy dose of being nauseated and zombie like (I’m not sure if zombies are nauseated so forgive my redundancy if they are). In the end the government decided not to cover the new medication and my doctor and I decided that we would go without it. 

This was written roughly the last week of January

I was tired last night. For the longest time I've just gone to bed when I've grown bored of being awake. It didn't matter if I had been awake for 24 hours, I still didn't feel tired, I would just eventually decide that I had been awake enough and had nothing left to do. It was very hard to maintain a sleep schedule especially because I lacked a routine and had no reason to wake up at a reasonable hour. It's been different the last few days as I've noticed that I've been tired. It’s a strange feeling to not be accustomed too, I was watching tv last night and I couldn't figure out why I was feeling so blah. It was only when I found myself looking at the time, it was 5:00am, that I realized that I was tired. At that point I turned my tv off and went to bed and fell asleep within a few minutes. While this sounds somewhat trivial, I can’t remember the last time I laid in bed only to close my eyes and fall asleep. There was no need to read or occupy myself on my phone, I just slept.

Another not so coincidental first that occurred after my first night of being tired was that I got out of bed because I was hungry. Much like sleep, I've been going through the motions of eating because I knew I should but never because I felt like I had to. I've been able to lay in bed from the afternoon until the evening without even the most subtle urge to get out to eat. Granted, I’m still lazy so I made myself a toaster strudel and a glass of juice, but I made it because I wanted to eat it, not because I figured I should probably eat something. Food is a lot more satisfying when it’s actually desired.

This part I wrote yesterday

Tonight marks the first night in almost a year that I will be medication free. I spent the last 3 weeks working off my last remaining medications and last night was the last one. Compared to the other medications, this time was a true cake walk, I felt no ill effects of reducing the dose at any time. I feel that it needs to be said that my lack of medication does not mean that I am pain free. In fact, I still don’t feel particularly good, but the pain is at a level that I can tolerate on my own without the need for medicinal intervention. I’m still waiting on what happens next but I’m hoping I’ll be able to feel a little more normal during that process. I’m still not at the end of the tunnel but the light at the end of it is as bright as ever. I start physiotherapy in April (there’s a bit of a wait for it at the hospital). On top of that, I’m slowly working towards increasing my level of activity but annoyingly I still get tired after not doing very much. I’m hoping with a sustained increase over time, I’ll get back to a level of energy comparable to that of a normal person sooner rather than later.

One last thing… for those that don’t know, one of the great sides of no longer being on medication means that I have the official all clear to consume alcohol. In other words, I've been given my cool card back. Should anyone want to hang out and be cool, let me know.

An Overdue Update with Good News.

It’s been almost a month since I've written anything so I thought it would be a good time to give kind of a general health update. Several people have been asking me so I figured it made sense to just write a general thing that covers everything that I could think of. Also, this way some people that don't care will read this anyways and be stuck knowing.

Overall things are improving but it’s still been on the slow side. It took about 2 weeks after the procedure for the overall level of pain to come down to a level that was lower than before the procedure. On December 27^th I had a follow up MRI and then had a meeting with the doctor who performed the procedure. Firstly, I have to say that an MRI laying on my stomach was awful. There was no comfortable way to keep my head, thankfully I was able to move it in between images as it was very uncomfortable to keep it in one place for an extended period of time. Secondly, laying on my chest on a hard table for 45 minutes meant that I was basically conscious of my breathing the entire time. Having the weight of my body fighting against taking a satisfying deep breath was also incredibly uncomfortable. Secondly, while normally MRI’s are a cold experience, for whatever reason this machine was generating a lot of heat, so much so, that they had to have padding between me at the sides of the machine. While this doesn't seem like a bad thing, it meant that I slowly got sweaty and gross while unable to move. It might be looking for things to complain about but it was just another level of discomfort that I wasn't prepared for when I woke up that morning. After that unpleasantness was done, I met with the doctor to review the images. I wish I had thought go get a picture ahead of time but through the magic of MS pain and a previous MRIs, I’m going to my best to reproduce what I saw.

 

It should be noted that there are a couple inaccuracies going on here. Firstly, this MRI is almost a year old and the visible layer of fat is entirely gone now. Secondly, the “dead area” should be a circle to show the spherical area that was burned but with this image, I wasn't able to use a circle without it covering too much. This image is also missing all the burned area on the bone as well.

From what the doctor told me, everything looks the way it should look and all is well. There was the expected area of inflammation in the area that was doing its job (this is also poorly represented by the white outer circle on my picture). The current plan is that if the procedure was able to improve things by at least 50%, they would do another MRI and look to see if there is anything else in the area that be destroyed in another RFA treatment. If things haven’t improved by at least that much, then it would be the end of the road for this option and I would be handed back over to orthopedic surgery.

                Last week I was actually feeling well enough to walk to the pharmacy to pick up some pills without using my cane. Unfortunately I underestimated just how rusty I was at walking on icy NDG sidewalks and only made it about 15 feet from my door before wiping out. Thankfully I managed to fall on my “good” left side and didn't do any additional damage to my back. The unfortunate part though is that with bruises on my shoulder, elbow, hip and knee, it made it impossible to sleep on my left side. This wouldn't be such a problem for a regular person but regrettably I’m unable to sleep on my right side because of my back. This made for a few sleepless nights but beyond that and a bruised ego, I walked away fine. For now, I’ll continue to use my cane until both the weather and my leg become more stable but I'll be damned if I get one of those ice gripping tips.

                For a bit of great news, I've finally been given the ok to enjoy alcohol again. While I have great friends and a great bar that didn't mind me sipping water, there’s just something about watching 2 people fight in a cage that calls for a beer. I’ll be taken it slow and easy for a while but it was a spot of good news that I will be appreciating for the foreseeable future. Also, it says something about the quality of a bar staff that I was able to walk up to a bartender that I had only met once before, give her the good news, and have a shot of whiskey in my hand in mere moments. They certainly know what they’re doing when it comes to keeping my business (For anyone that doesn't know, I’m referring to Mclean’s Pub but if you've ever asked me about anything related to going out, you probably knew that). This good news was due to my cutting down of medication since my procedure. As of just a few days ago, I’m down to only one medication of my previous 6. Anyone that knows how much I've been on, knows how big a deal this is. While I can’t say enough good things about my pharmacist throughout all of this, I’m kind of looking forward to making regular people small talk rather than discussing all the medications.

I was not joking about a lot of meds

                With some upcoming appointments in the next few weeks, I’ll be looking to add more activities to my life to slowly increase my level of functionality and overall energy levels. I look forward to the days where I won’t be tired from just getting groceries.