So Behind

I know. I know. It's been ages since I've updated my blog. I've definitely fallen a little behind. Finding time to write new posts slowly became more and more of a challenge as I went back to work and now that it's the summer there seems to be even fewer free hours and weekends to get caught up. I appreciate all of my readers and hope this hasn't discouraged you from continuing to follow me. I plan on writing several new posts for all the stories and events I've missed from this month and hopefully you will all be caught up shortly. Stay tuned for posts about adventures at my cottage, climbing a 100ft tower and other random happenings.

One Year Follow Up

July 6, 2012 marked one year since my surgery. My one year follow up appointment came a week and a half later on July 17th. I did, however, have a party on the 7th to celebrate a year of cancer free scans. I was a little worried it might be bad luck to celebrate before I actually had results from my one year scans but it turns out there was no harm in celebrating ahead of time.

Not only were my CT, xrays, and blood tests clear for any signs of cancer, my oncologist has decided I can have my portacath removed. It's a small device that was inserted just under my skin, sits between my chest and collar bone, and has a direct line into one of the veins in my neck. This is how my chemotherapy was administered. It was left in for a whole year after finishing chemotherapy until I had established a record of clear scans. There would be no point in removing the port only to have to put it back in.

Celebrating one year feels great. It's hard to believe that much time has gone by already. I still have to continue seeing both my surgeon and oncologist every three months for the next two years though. Once I reach three years of clear scans I will progress to appointments every six months. I'm ok with the frequent appointments for the times being. It's extra assurance that everything is still going well. I have people keeping a constant eye on me with repeat scans and blood tests. It puts me in such a great mood the day after receiving positive news at a follow up appointment. I know that at least for the moment, everything is just fine.

The down side to having frequent appointments is the evening before. It's really easy to start wondering, "What if the scans show a new growth?" "How am I going to tell everyone that I have cancer, again?" "Who should I tell in person and who will I email?" "What if tonight is my last night being cancer free?" It certainly makes for a scary, stressful, sleepless night. I'm a positive, optimistic person too, I can't imagine what the night before a follow up appointment is like for a negative, pessimistic person. The important thing is, I got the all clear. So I'll try not to worry or stress about it for at least the next three months.

While at my appointment I showed both my doctors that I could walk without my crutches. I insisted on showing them at the same time, I usually see them each separately, but didn't say what it was I was going to show them until they were both there. My surgeon and oncologist, along with all of their residents and interns and the nurses who were around, gathered to watch as I took a couple steps down the hall. My surgeon wasn't quite as excited as I would have liked him to be but everyone was really happy. He seemed much more impressed when we told him I had recently climbed a fire tower without my crutches, but I'll get to that in another post.

At the very end of my appointment he said he'd be looking forward to hearing about what new adventures I'd been up to. I think I've gone from surprising and impressing them at each appointment with my accomplishments to everyone expecting me to tell them about something new and unbelievable that I've done or learned to do. Who knows what I'll be telling them I did or can do three months from now.

Best Anniversary Ever

You don't need me to summarize the last year for you. It's laid out right here in the last 92 blog posts. There have been high points and low points and oh so man firsts.

... Or at least this is what I thought I would write leading up to today. That is until I went to physio.

Today is the one year anniversary of my surgery. It has also been an entire year with scans clear of any signs of cancer!!! If that's not an anniversary to celebrate, I don't know what is. I was already in a fantastic mood heading to physio but leave it to them to make my day even better. They had cake and flowers and a "Congrats" balloon for me. The cake even had a #1 candle on it. I felt so special. Everyone was so excited and happy for me. I've been going to the clinic for 9 months now, usually 5 times a week, and I've become close with most of the staff there. They've been first hand witnesses to some of my greatest struggles. And to the biggest accomplishments as well.

After all the excitement, congratulations, hugs, and pictures, we got down to work. I was there for physio after all.

They say even the longest journey begins with a single step. Mine has been leading up to one. With every day, every exercise, every progression, every set back, the thought of taking a single step without crutches or a cane has always been in the back of my mind. Early on in my session today I was able to do the stairs without any assistive device. I held on to the railing but that was it. This was huge! My current as well as original physio were both there for it and we were all so excited. Especially as it was just one week prior that I tried the stairs with a cane for the first time. This day literally just kept getting better. And it wasn't over yet.

As I was standing in the hall with my cane, my original physio was encouraging me to try taking a step without it. She was excited because I had just done so well on the stairs and was sure I could take a step. I tried a couple times but would end up leaning on my cane or not be able to get my left foot off the ground. It seemed like I wasn't there yet. Close but not quite. So my current physio and I continued with other exercises.

After showing more improvement on the things we were working on, she too thought I should try walking without my cane. Cane in hand, attempting not to put weight into it, I gave it another try. This time it appeared like it may actually be possible. We went into the hall for more space and got ready to give it a real try. Wait! I needed to call my original physio over to see. I knew she'd want to see it. I'd hate to be successful and for her to miss it, especially if she was just down the hall.

So with both physios watching, one close by to grab me just in case the attempt was less than successful, I gave it a real try. Like so many new things I attempt, it's just as much a mental challenge as it is a physical one. Here we go... lean cane against the wall... transfer some weight onto the right leg... a little more... pause until I feel stable... deep breath... step forward with left leg (easier said than done)... Oh my gosh, I did it! ... Okay, let's take another step...Wow, I can't believe this is actually happening right now... Take another step.

Obviously we took a video. These were my very first steps in a year. Not the type of moment we'd want to miss. First steps can only happen once. This is just the beginning though. If it's possible, I think I'm even more determined to walk without crutches or a cane now.

It felt really weird to be walking and have both hands free. I've had to use my arms, or at least one, for every single step I've taken over the last year. I don't think I've ever been happier. I couldn't sit still for the rest of the night. Without a doubt, that is a moment I will never forget! The fact that it happened on my one year anniversary just made it that much sweeter!

Beach Volleyball Tournament

I was really excited when several weeks ago my physio had asked if I wanted to play in a beach volleyball tournament. She was entering/organizing a team for the staff at the clinic and knew I used to play. Obviously I wouldn't be able to do a whole lot, for the most part I'd have to be stationary, but I was willing to give it a try.

I knew my limitations and that I wouldn't be able to run around the court but it wasn't until about a week before the tournament that I thought of a potentially big issue. I wasn't worried about the physical act of serving but couldn't conceive of a possible way to serve from outside the court and then get into position. As I saw it, there were three possible solutions. One, I rotate off before serving and come back on after, skipping the serving position all together. Although that would be no fun because then I wouldn't get to serve. Two, I serve from outside the court and my team carries on the rally with only 5 players on the court. Or three, and the most desirable choice, I serve from within the court. We would just need to clear this with the opposing team before each game. And that is exactly what we did. Our captain would explain the situation to their captain and see if they were ok with it. There was only one team who really took issue with it and questioned us. I don't think they fully believed I couldn't move at all after serving. Reluctantly they allowed it but I'm sure any scepticism was put to rest when they saw me play and not take a single step.

I was able to hop a little bit and turn to face any direction. I wasn't afraid to dive for the ball either. Although, it was funny when I'd dive for a ball that would have landed just a couple steps from where I was standing. Under any other circumstances, someone would simple take a couple steps in that direction. Amazingly, I truly only fell down one time. I ended up twisted and caught up on my own leg when going for a ball. Other than that, I was able to stand in the sand without my crutches for nearly 8 hours total.

The other near impossible task we had to figure out was how I would rotate around the court. Short of crawling or rolling to my new position, I needed someone's help to move. In the end it was amazing teamwork that kept me moving around the court. I would link my arms around the neck of whoever was closest or the first person to come to my aid and they would carry me on their back to my new position. As the day went on and the guys started to play without shirts on and me in my bikini top, it did get a little gross. Everyone was hot and kind of sweaty... need I say more. It was a very effective system though. However, I did feel bad about all the extra work my teammates had to do whenever I was on the court. Not just rotating me but covering a lot more ground during the game as well.

Just a few other things worth mentioning from the day. Walking in the sand with crutch was interesting. It wasn't as difficult as I thought it would be but it wasn't easy. With every step the tips would sink a couple inches. This did make for an amazing arm workout though. I sure felt it the next day. Also, I will still be getting sand out of my crutches weeks from now.

Early on in the day while moving between courts, a girl from one of the other teams asked me if I was playing. My answer was obviously yes. Later that afternoon when we played her team and she saw me on the court she looked at me and said "I thought you were kidding!" I found this pretty funny.

Lastly, I started off the court for one of our games. When we rotated and I came on, or should I say was carried on for the first time, the entire opposing team applauded me. That was kind of cool.

All in all it was a great experience and I'm happy I did it. I was playing with an amazing group of people and a couple of them were really good. An added bonus to an already fantastic day, somehow we ended up winning the 6s division, losing only one game all day. Way to go team!

Sitting Volleyball

For a few months now I've been looking for a league or group that played sitting volleyball. Excited, doesn't begin to describe how I felt a couple weeks ago when I found out a friend of a friend knew of a group.

Sitting volleyball is essentially the same as 6s court volleyball, only the players sit directly on the court. The net is obviously lower, 1.15m in height (slightly lower for women), and the court is a little smaller, both in length and width. Most of the same rules apply, although in sitting volleyball you are allowed to block the serve. Additionally, you must have at least one bum cheek in contact with the floor when you make contact with the ball.

I had a blast playing on Thursday. Leading up to it I had been pretty nervous. I hadn't played in almost 2 years, since just before my diagnosis when I was told to stop playing, so I was worried I wouldn't play very well and would frustrate everyone else who was playing. I foresaw myself making terrible passes and because your teammates can't run for the ball, accuracy is even more important than usual.

After a brief introductory lesson on how to move around the court, I was ready to play. Or as ready as I was going to be. We did a bit of a group warm up with some drills and then got right into a game. I haven't had that much fun being active in a really long time. Just like sledge hockey, one of the greatest aspects of sitting volleyball is that I am able to play it exactly how you are meant to. I don't require any modifications or special allowances. Sure it's a modified version of volleyball but as far as sitting volleyball goes, I'm no different than any able body person playing.

As an added bonus, I had the opportunity to meet and play with a couple guys from team Canada. One of them actually being the guy who went through how to move around the court with me. I think I played pretty well, especially for a first time out. I definitely wasn't terrible. I even returned one really good hit from one of the team Canada guys. After the play, he asked the guy playing back row directly behind me if he had returned that. His reply, with a bit of a surprised expression on his face was, "no, Jen did." I felt really good about that, not to mention more confident about coming back to play again.

My arms weren't too sore the next day because I'm used to walking on my arms all day. My tailbone on the other hand was bruised. And not just, oh it was sore, there was actually a visible bruise. Not having a sitting bone on the right side puts a lot more pressure than usual on my tailbone, especially when you're sliding around the court and not thinking about how your weight is distributed or what you're sitting on.

Even though it hurt to sit for a couple days, there is no doubt in my mind that I will go back. I actually enjoyed it so much that I wouldn't mind looking into competing in the sport some day.

Batter Up

My co-workers entered a team in a softball tournament this past weekend. It was by no means an experienced team. A handful play regularly or often enough but literally half of those willing to play had never played before. A couple didn't even know most of the rules, just the most basic.

I would have loved to join them but being on crutches makes that very difficult. It was a beautiful day though and I had said I would try to come along for support, so I went. After sitting on the sidelines cheering them on for a couple games, I wanted to play. Obviously I couldn't do everything. Or more accurately, most things. However, I was itching to try batting at least. I'm not sure what made me believe I could do this seeing I hadn't played baseball since elementary school gym class but I wanted to try. I figured I could bat and someone else could run for me. I do believe, technically, you have to at least run to first base before you can substitute in a pinch runner. But who's going to deny the girl on crutches a chance to hit.

Just before our last game I proposed the idea to the team. Everyone seemed on board. I did want to try it quickly before the game started to see if it was even possible though. Could I even swing while balancing without my crutches? After successfully making contact with the ball on the second try, everyone was like "you're in!" We were first up to bat and it was decided I would go first.

The look on the other team's faces was priceless as I "crutched" up to the plate. You could tell they were confused and trying to figure out how this was going to work. Once in place I traded my crutches in for a bat. I managed to get a hit and the girl running for me got on base. She went on to score a run as well. After all the excitement of me actually getting a hit and of her getting on base, someone eventually realised "oh ya, Jen can't move until we bring her back her crutches."

I went up to bat 3 times and got a hit each time. The girl running for me loved it. All day she had been striking out when she went up to bat. She said our arrangement was perfect, not only did she get to run now but it was without the pressure of having to bat.

I didn't think of it the first time but I was sure to get a video of me batting the next time up.

It Takes Guts

The day following Relay For Life, I participated in the Gutsy Walk for Crohn's and Colitis. This is the 5th year in a row my girlfriends and I have participated. Money raised goes to the Crohn's and Colitis Foundation of Canada and in turn goes towards research to finding a cure. I was diagnosed with Crohn's disease 9.5 years ago and there is still no know cause or cure.

Our team was faced by a couple challenges that day. Not only was it extremely hot that day, but I'm on crutches and one of my friends is pregnant. At least the 4 of us that had done Relay For Life weren't still really tired from that. Later when I posted a photo of our team at the finish line, this is the caption I wrote to go along with it, "5km, 32 degrees out, crutches, 7 months pregnant but we made it!!!" It really sums up the day.

This year I raised $3,000 and as a team we raised over $4,000. Since the very beginning our team name has been "J Walkers". This year we decided to go ahead and make team t-shirts. "J Walkers" was written across the front and on the back "Walking In All Directions To Find A Cure." They turned out really well and we looked great as a team.

I've jokingly said to my friends, "I promise not to get any more diseases so we don't have to add another fundraiser to our list." I really hope I can keep this promise. I know we'll all be extremely happy if I can.

Up All Night

We made it through. 7pm to 7am! Participating in Relay For Life this year was a really great experience and I did it with the most supportive friends anyone could ask for. It's hard to put into words how it felt to be there with such a wide range of emotions accompanying the night.

Before the event really began there was a Survivors' Reception where all the survivors had dinner and listened to a couple personal stories about why people relay. It was great to sit down and chat with other survivors. Others who have been through a similar situation. Others who know what it's like to sit down with a doctor and have them change your life forever. It was difficult listening to a girl about the same ages as me struggle to get through telling the entire group her story. She couldn't have been speaking to a more supportive group though. Everyone there understood just how hard it was as they themselves had been there or supported a loved one going through it.

To kick off the event they begin with the Survivors' Victory Lap. Anyone who has ever been diagnosed with cancer, whether they are still fighting, just finished treatment, or have been cancer free for years, participates in the very first lap. Often the focus is on those who have passed away from the disease, this lap is a way to celebrate and recognize all those who have been successful in their fight. It makes you feel like you've actually accomplished something. It's a reminder that yes, I did have to fight to be here. All the survivors get a yellow Relay For Life t-shirt, rather than a white one, and wear a blue ribbon that says "Survivor". It's kind of nice to have it out there in the open. Unlike always having to explain why I'm on crutches, which can get frustrating and exhausting.

Another big part of Relay For Life is the Luminary Ceremony at 10pm, where they line the track with personalized bags and light the candles within them. Luminaries are purchased either in memory of someone who has passed away from cancer or in honour of someone who has survived or is still fighting. I felt special having my very own luminary purchased by my friend. Once all of the luminaries were lit, I got to light my own, they turn off all other lights so the track is lit solely by the luminaries. Then everyone was gathered for a moment of silence followed by a very talented woman singing two beautiful songs. It was very emotional and it go to me. I'm not usually one to cry, at least not in front of people, so I think this may have been the first time one of my friends had ever seen me cry. The luminaries stay lit for the rest of the night and on our future laps around the track, we'd walk slowly and read all the messages written on them.

The only issue I ran into while the track was lit solely by the luminaries was that people could no longer see my crutches and occasionally bumped into them. Somehow this came up while we were talking to another team which ended up leading to my solution. This other team actually had glow sticks and were happy to give me a couple. We took the glow sticks and tied them to the ends of my crutches. They weren't super bright but it was enough to catch a person's eye so they were aware of them.

I could have done without the rain. It poured from about 12:30 - 3:00 am, let up for maybe 2 hours and then rained some more. It was a great night overall though. Great company, tons of food, perfect temperature and an obviously important cause. There's a good chance we'll do Relay For Life again but I'm not sure we'll stay all night. There wasn't much to do between 2am and 6am and the final lap at 7am was kind of anti-climactic. It was no different than any of our previous laps and there was probably only about 10% of the participants still there. I'd say more than anything, I would have more friends inclined to join us if they knew we weren't committing to the entire night. We'll see though. It's a whole year away.

Relay For Life

In just 19 hours I will be participating in the Canadian Cancer Society's Relay For Life. It's "an all-night fundraising event to celebrate the lives of those who are living with cancer, remember loved ones lost to cancer, and fight back against the disease." It's a 12 hour event, lasting from 7pm Friday night to 7am Saturday morning. The idea behind it being an all-night event is that a cancer patient has to fight the disease around the clock, cancer never sleeps and neither will we. I'm really not sure if I heard that in some promotional material or if I came up with that explanation on my own. Either way it's true.

I attended Relay For Life last year in my home town but didn't stay for the entire night. I actually only went to participate in the Survivors' Victory Lap, the very first lap kicking off the event. The last day of my last round of chemo had been just 6 days before the event. In a way it was a really nice way to celebrate that I was done with that stage of my treatment. This was before my surgery so I was not on crutches but I was very weak so the one lap was more than enough for me. I went home right after.

I'm nervous about participating this year because it's all night, a lot of walking, and I'm sure I'll be exhausted but I am looking forward to the experience. I'm happy to be participating in the Survivors' Lap again this year. It's hard to explain how it feels to be recognized and celebrated for surviving cancer, but I will say it feels good. There's just so much love and support from everyone who has come to participate. It feels a little strange because I've always thought of my fight as something I had to do, not something I had a choice in. At the same time, it's a giant accomplishment and it's nice to have it acknowledged. It has now been an entire year since I've had any chemo treatments and this is a great event for celebrating that milestone.

I will definitely post an update about the event when, and if, I survive the 12 hours. It may take a couple days as I'm sure I'll want to sleep a good chunk of Saturday. And then I'm actually participating in a 5km walk for the Crohn's and Colitis Foundation of Canada on Sunday.


If you would like to support me and the Canadian Cancer Society, you can make an online donation here DONATE NOW!

Breaking Up Is Hard To Do

Sometimes the hardest thing is the right thing. Case in point, my physiotherapist and I "breaking up". It's something the two of us have debated off and on for some time now. The day we finally made the decision, she looked at me and said, "I feel like I'm about to break up with you."

In 7.5 months I have had just over 150 physiotherapy and rehab Pilates sessions. 96 of which have been with my physiotherapist. She has been with me since day one when I walked into their clinic back in October. Back when not one person at that clinic had heard of, let alone seen anyone, who had gone through the surgery I did. When I started going to this clinic I saw my physiotherapist 5 to 6 times a week. After about 2 weeks, I began seeing their rehabilitative Pilates instructor 2 days a week. It was weird at first to drop my physio sessions down to 3 or 4 times a week because we had already become used to seeing each other basically every 24 hours. It would feel like so much time had passed between appointments even though it would only have been a day or two. It's going to seem really strange at first, when I switch therapist, not seeing her all the time. Fortunately, we have become such great friends that we get together outside of physio as well. This being part of but not the entire reason we decided to "break up."

The new physiotherapist I'll be switching to is at the same clinic and seems very nice. I've gotten to know her a little bit in passing as I am there 5 days a week. She has additional training as a Certified Strength and Conditioning Specialist which may come in handy for coming up with creative ways to treat me. My current physiotherapist has said in the past, "I should really share you." Usually followed by, "but not yet. I want to keep you all to myself." With my surgery being so rare, it's not likely any of them will ever see another "me" in their careers. So I think it is a great opportunity for another physiotherapist to work with me. Not only is it a great challenge and learning experience for her, it will keep things interesting for me. She is sure to have new ideas and exercises, and even just different approaches to some of the things I'm already doing.

As a parting gift and a bit of a thank you for everything my current physio has helped me achieve so far, I had a custom t-shirt made for her. At physio I'm constantly wearing all the t-shirts my girlfriends have made for me, it only seemed appropriate to have one made for her. On the front it says "Jen's Physio" and on the back "Leading Physiotherapist For Hemi Pelvectomy Recovery". It's meant to be funny but at the same time I believe it to be true. The number of physiotherapist to have treated someone after that surgery has to be at least as rare, if not more so, than the surgery itself. Regardless, no matter how many others there may be out there, I can't imagine any of them working with me better and getting me to progress faster than she has.

The whole thing is kind of bitter sweet. The idea of working with someone new is exciting, no question there. But no longer working with my current physiotherapist, after accomplishing so much and coming so far with her help, that makes me a little bit sad. In the end though, I've made an amazing friend for life and not just a physio for the time being. And there's nothing sad about that.

However, I do wish we had just 4 more sessions together to make it an even 100.

Weekend Away

For the long weekend I went away with a friend of mine and one of her friends. We didn't have anything crazy planned, just get out of the city and visit her home town.

When she invited me to come with her I was really excited about the idea but equally nervous. Up until that point I had only really traveled to and stayed at my parents' house. Other than that I've stayed overnight at a couple friends' apartments maybe all of three times and just for the one night. The thought of being in a car for a good six plus hours, the farthest/longest I've traveled since my surgery, and staying three nights in an unfamiliar house I'd never been too, it seemed like a lot. I was back and forth for a couple days on whether I would go or not.

In the end my decision wasn't just about this particular trip but with every trip I may want to take in the future in mind. At some point I would have to go out of my comfort zone and travel farther and stay longer in a place I didn't know. The added bonus of this trip would be that of all my friends, I probably trust her the most in terms of helping me with any physical disadvantages I may encounter or need to figure out. She definitely knows and understands my physical capabilities and limits better than anyone else. I knew that if I ran into any issues she would help me or even brainstorm with me to find a different way I could do it myself. Not that I ask  for help anyway.

I'm always surprised when packing to go anywhere, even if it's just to my parents. I feel like I have/require several mobility aids but in actuality I only have a couple. Most importantly there's my crutches, but it's impossible for me to forget them. If I am going somewhere for more than the day, I will often bring my second pair of crutches. I may want to switch between them depending on what I'm doing. As long as I'm bringing or using my forearm crutches, I will bring my modified shoes as well. These are the only "extras" I brought with me for the weekend. I decided to leave my shower bench behind even though there was room in the car. This was in part because I was pretty sure I'd be able to manage the shower without it. At least I hoped so. Not having seen their shower before did make me nervous though. The other part is that it's a little embarrassing. I feel like I'm 90 years old bringing it along.

Everything went smoothly. My friend's friend and her family were all great and really accommodating. Everyone was willing to give me a hand whenever I needed it, and even when I didn't. The drive was long and my butt was sore by the end of it, both there and back. It wasn't just me though. We were all sore and stiff by the time we got out of the car. I'm pretty sure I'd have felt relatively the same had I not gone through my surgery.

Not only was it a fantastic trip, I had such a great time, but I've now pushed the limit in my mind of what I think I can handle. I likely won't hesitate as long next time an opportunity to travel/get away comes up.

Weekend Challenge

During my session on Friday, my physio presented me with a challenge. Choose one day this weekend and for the entire day only use one forearm crutch. This is limited to when I am in my apartment only. If I am going out I can then use both of them. But no matter what I'm doing, if I am at home, I must limit myself to one crutch.

Challenge accepted! Of Course. I'm not going to say no without at least giving it a try.

I stayed home all afternoon and stuck to using one crutch from 9am right through until 9pm. There are a couple details from the day that stand out more than others, some downsides, some up, some funny. For the first couple hours of the day I found the whole exercise annoying. It does take more effort and concentration for me to walk with one crutch and even more so earlier in the day, when I find my balance isn't as great. There were moments when, for example, I'd be thirsty and think "do I really need a drink?" because I didn't really want to get up and walk. Anytime a thought like that crossed my mind I forced myself to get up. I made an effort to stick to my usually Saturday routine and not allow myself to choose not to do something because I didn't want to do it with just one crutch. As the day went on it began to feel more normal and less of a hassle.

There were no major incidents but I did run into a door frame early on in the day. When I only use one crutch I tend to lean a little more to the left (the side the crutch is on). I didn't take this into consideration as I walked into the washroom and hit my shoulder off the door frame. It only took one time for me to learn though. I was sure to give myself a little more room on that side from then on as I went through doorways.

Having to wear shoes all day was maybe the biggest downside to the challenge. But I wouldn't be able to walk around with one crutch all day without my modified shoes on. Besides just not loving having shoes on inside all day, it made getting comfortable and relaxing on the couch a little difficult. I also opened the fridge door into my foot several times that day because of the shoe. Usually there's enough room and the door would clear your foot but with a 2.5" lift, there's no swinging the door open over my right foot.

The turning point in the day came when I had lunch. Preparing my lunch was no different than usual. I often walk or hop around the kitchen with one or no crutches anyway. Freeing up both hands to carry ingredients, pots, pans, or what ever else I may need is really helpful. I just use the counter or table to help me move around the kitchen. It was carrying my meal back to the living room, where I always eat, that I noticed a big difference. Carrying the plate in my free hand was so much easier than trying to hold onto a plate with my finger tips while the majority of my hand is wrapped around a crutch handle. It's awkward and slows me down a great deal. Yes, I walk a little slower and have to concentrate a little more when I use one crutch compared to two but adding a plate or glass (one or the other but not both) doesn't really change the speed at which I can walk with one crutch like it does when I'm using two. For this reason I will say that carrying anything other than a bag is much easier to do with just the one crutch.

I did end up laughing at myself at one point during the day. Occasionally I will carry small things in my mouth rather than my hand, for example utensils. I was getting ready for the day and was about to do my hair. My comb and a clip I wanted were in my bedroom so I went to get them. I picked them up and put them in my mouth to carry. As I went to take my first step back towards the washroom, I shook my head and started laughing. I took them out of my mouth and carried them in my free hand.

All in all I would say it was a very successful challenge. If it wasn't for having to wear shoes the entire time, I would use just one crutch around my apartment more often. It has inspired me to look for a pair of shoes I can have modified that I can slip on and off more easily. Shoes that could be my indoor pair. Perhaps even those platform flip flops that were popular with teens for a while. Paired with a regular flip flop I'd be all set. So if anyone comes across them in a store, please let me know where I can get them.

New Tips

Three Shoppers Drug Marts, a Rexall, and one mobility supply store later, I was finally able to purchase replacement tips for my forearm crutches. At one store I found replacements for cane tips but not crutches. Some of the stores said they carried them but not at that location. In addition, I had also called a Shoppers Home Health Care Centre and they just seemed confused by the forearm crutches, that I wasn't looking for standard ones. The only difference between the two is the tubing on the forearm crutches is slightly narrower. That and they are grey not tan.

It was at the mobility store where I was finally able to get them. I called the day before to see if they carried them and they assured me if the replacement tips they sold did not fit, we could take a pair right off a set on the floor. Excellent! Their store is not the easiest to get to without a car which can only mean one thing. Physio field trip! This time with my rehabilitative pilates instructor. Turns out the replacement tips they had were too big and we did end up taking new ones off another pair of crutches. Sounds like they are going to look into ordering that size of replacement tips for the store. Hopefully they do and I can purchase a couple pairs at the same time the next time mine wear out.

Having new tips on my crutches is kind of like wearing new running shoes. Because you gradually wear out the old ones, you may not notice they aren't as comfortable anymore. As soon as you switch to brand new ones, you feel just how much cushioning you were missing before. The first couple days felt fantastic. Every step felt so much softer. It wears off though as you get used to it being the norm. It did take me a couple hours to get used to having the new tips on. The difference in height is pretty minor, it's only a difference of about half a centimeter. It's enough though that I was catching my crutches on the ground ever couple steps. Not a problem so big that I ever actually fell down but I did trip a couple times. Like I said, it was only for a couple hours. After which I got used to them and naturally adjusted to the new height. It should be several months before I need to replace them again.

But They Exist Too

It was about 6:20 p.m. when I stepped onto the subway Friday. Although I was catching the tail end of rush and it was dying down, it was still quite busy. Especially when it's busy, I never expect or assume I will get a seat. So when I got on and had to stand I was not surprised or upset in any way. Two stops after boarding the train a lady tapped me on the arm. She pointed out a seat that had just been vacated and stepped aside so I could get to it. I had less than the width of the subway car to travel to get to the seat but before I could reach it a man went to sit down in the now empty seat. The lady who had tapped me on the arm stopped him and gestured towards me, indicating the seat was for me. With a little reluctance, he stood up and stepped aside. As he did this, another woman swooped in and sat down.

I should mention, ALL of this happens while we are stopped at the same stop. Really not much time goes by at all.

Back to the woman who has just sat down. Once again the lady who originally tapped me on the arm gestures towards me to say the seat was for me. The woman who has just sat down gives me the once over, up and back down, then makes a face and shakes her head no. She was not elderly, pregnant, or visibly disabled (not to say she couldn't have been, but she sure didn't appear to be). All I can say is "seriously?!". I swear you could feel the reaction of everyone around. It wasn't just surprised expressions but gasps and uncomfortable chuckles of disbelief.

Almost immediately the woman next to her got up and offered me her seat. As she did, she gave me a look to say "I can't believe that just happened". I was thankful for the seat, I still had several stops to go and the subway was still pretty full. I did feel a little uncomfortable though, I was now sitting right next to the woman who didn't get up, but at least I had a seat.

I very rarely ask someone for their seat directly. I've done it maybe all of two times. I'm used to people avoiding eye contact or pretending like they don't see me so they won't have to get up. But this actually shocked me. I wasn't even angry, I just couldn't believe it. Mostly because I can't imagine refusing a seat to someone who could clearly use it more than me. A couple months ago I even turned down an offer to sit from a mother with a baby in a sling. I just didn't feel right taking her seat. I definitely wouldn't have been able to stand my ground with about 15 other people standing on the subway staring at me in awe. To each their own I suppose.

They Still Exist

Yesterday was such a fantastic day. There was nothing major that happened to make it such a great day, just a bunch of little things that kept me smiling all day long. There was one thing that stood out though and made my day. On my way out of a building a man was walking out ahead of me. He was far enough ahead that it would have been unreasonable to expect him to wait and open the door for me. It would have been a little awkward even. So I didn't think anything of it when he walked through the doors and kept going. Apparently he had seen me though. Once outside, he crossed in front of all the doors over to where the button was for the automatic door entrance and pressed the button. The fact that there was an accessible door means it really wasn't necessary for him to hold the door or help me in anyway.

What took this man next to no effort and literally 1 extra second was such an amazing gesture in my eyes. While it isn't difficult for me to press a button on the wall and have the door open, it does require me to stop walking completely so I can take a hand off my crutch and press the button. The door then takes a few seconds to open and I have to wait until it opens fully before I can walk through. So even though it is only saving me a couple seconds, having one less struggle or step to go through for such a common daily action is what makes the difference. It's the same kind of feeling you get when you press the elevator button and the doors open instantly because it's already there. Not having to wait those couple seconds while it travels to your floor is glorious.

The best part of this small action is the confirmation that people like him still exist. So many people tune out everything and anyone else around them. Their only concern is getting from point A to point B. I don't always get a seat on the subway. I've had people let doors swing closed behind them and into me. Most of the time the city is a "fend for yourself" kind of place. I accept this but it's nice to see there are still kind individuals out there who know it doesn't take a lot of effort to show a little compassion and be aware of those around them. It's often just the decent thing to do.

Breakthrough

Typically, most of the breakthroughs I have are at physio. This one happened on the way to physio. Unfortunately, this was not actually an accomplishment but me physically breaking through something. I've been keeping and eye on them for some time now but on Thursday I wore right through the rubber tip on one of my forearm crutches. I had been planning to replace the tips on both pairs of crutches soon but now it's a much more urgent matter. I don't feel it as much when I'm inside but walking down the sidewalk, I can feel the metal of the crutch grinding against the concrete.

It didn't solve the issue completely but lucky for me, the very next at work a guy came in and asked if he could donate a pair of crutches to us. (If you knew where I worked, it's not as odd or out of the blue as it seems). Currently I am using my full length crutches at work. Their tips were definitely worn but would have been fine for a little while still before I needed to replace them. The guy who donated the crutches must have only used his for a couple weeks, maybe months, which I'd say is pretty standard for temporary crutch use. This means the tips were barely worn. After checking with management, I switched my tips for the donated ones. And with that I have what might as well be brand new crutch tips.

The donated crutches will never be used by anyone for an extended period of time. I can't imagine a scenario where they would be used for anything longer than a day. So my "old" tips are perfectly suitable for this pair. Not to mention it is now the second pair we have on hand.

There is still the issue of getting replacement tips for my forearm crutches though.

Carry On

Over the past two weeks I have made a point of trying to do everything possible around my apartment with my forearm crutches. Meaning I switch to my full length crutches as little as possible. My most challenging task and primary focus over the past two week has been carrying meals.

I'm proud to say, since the Easter weekend, I have only had to resort to using my full length crutches to carry a meal on two occasions. It took some trial and error and then practice once I discovered a way to do it, but I have become fairly good at carrying small plates and bowls while using my forearm crutches. On the two occasions I switched crutches, it was because I had made a meal that would only fit on a large dinner plate. Although it is still a bit awkward to carry a small plate or bowl, the large plate is much to awkward and heavy to carry. I'm really only able to hang on to it with a couple fingers and only just the finger tips. As far as the bowl goes, I haven't actually carried any liquids in it yet. So far I've stuck to things like pasta or salad.

Seeing I'm already on the topic of carrying I will tell you about what I was able to do yesterday at physio. With just one forearm crutch, modified shoes on, I was able to carry a small cup of water up and down the hallway. It was a really little cup, one of those paper ones for a water cooler. It didn't hold a lot of water but the cup was filled to within about half an inch of the top. I was kind of nervous to move at first. Not that it would have been the end of the world if I did spill a little water on the floor but I really didn't want that to happen. I love a challenge but really hate to fail. I did eventually take a step, followed by another. There was quite a bit of hesitation between steps at first but after a bit I was able to pick up the pace.

There was the obvious good feeling of accomplishing something new but I notices something else as well. A positive "side effect" if you will. As I was concentrating and paying so much attention to the cup and the water in it, I wasn't looking at my feet. At least not as much. An on going goal and obvious necessity is for me to look up while I'm walking. I do this when I'm using both crutches but still don't feel comfortable while using just one. This exercise may help get my eyes off the ground. It could even be a sign that I am getting there, that I'm beginning to trust my foot and crutch placement more without the visual confirmation.

All Clear

I know it's not medically correct to say until I think you are 5 years clear but I'm going to say it anyway. I'm still cancer free!!!

Yesterday was my 9 month follow up. 9 months, 11 days since my surgery to be exact. I was back in to see both my oncologist and surgeon which I must do every 3 months for the first 3 years. I had a pelvic x-ray and chest CT last week in preparation for this follow up and blood tests when I arrived. With Ewing's sarcoma the biggest concern, other than a recurrence in the bone, is the cancer spreading to the lungs. This is why they are keeping an eye on mine with repeat CT scans. Here's how my oncologist likes to present the results, "there are no signs of disease". How I like to say it,  "I'm still cancer free!!!". Scans were good. Blood tests were good. Everything is GOOD.

It wasn't even my actual oncologist who saw me yesterday, it was his fellow. So the doctor working directly below/for him. I suppose I'm too healthy now and no longer an interesting case for him. Which I suppose is a good thing. As I went to leave though my actual oncologist was heading into one of the other exam rooms and when he saw me said, "don't leave." But then went in with the other patient. I waited though and when he came out he just wanted to chat casually and see how things were going. This was quite surprising as he doesn't really do casual conversations. He's always rushing off to the next thing and seems like he constantly has a number of things on the go. Sometimes it's even hard to keep him around long enough to answer a question. So it was pretty cool that he genuinely just wanted to see me and talk to me even though he wasn't giving me any results or discussing my case specifically.

Then it was time to see my surgeon. While waiting in an exam rooms for him, one of his medical students came in to ask me a couple questions first. I'm pretty used to this as both my doctors are world renowned and always have several doctors working along side them. I often end up answering questions and being examined a couple time. The medical student asked me a couple questions and had me walk around a bit and do a couple things to show mobility/range of motions. Then she admitted to being absolutely fascinated by me. What I had done. How I was doing. She almost seemed giddy when she mentioned that she had seen my x-rays. It kind of has that effect on people who understand what they are looking at. Well, that or shock.

Next I saw the fellow working with my surgeon. Again, I guess I'm too healthy for the bigwigs now. He informed me that everything with the pelvic x-rays looked good. He wanted to see how well I was moving around so he had me walk up and down the hallway. He was so impressed with how well I was getting around on my forearm crutches he asked if he could take a video of me. Not only did he think it was an amazing recovery/progress but he wanted to show other patients who were just starting out the process. He said it would be great to show them how positive the "after" could be. I think that's also part of the reason he had me walk in the hall. There was a guy waiting in one of the other exam rooms who was there to get the details about he's upcoming surgery. Not as drastic a surgery as mine but still an orthopedic surgery on his leg. So I think they wanted him to see me up and about and happy.

That's also when I got the attention of my surgeon. And everyone else around at the time it seemed. He was in his office discussing a case with a couple other doctors and completely stopped their conversation when he saw me walking around and got all excited about how amazing I was doing. He wasn't just impressed with how well I was walking but how fast I was moving as well. He almost couldn't believe it and he's the one that performed my surgery.

It's a great feeling to have everyone make such a big deal over my progress. Not that others haven't but amongst my friends, family, coworkers, at physio, everywhere, my situation is pretty unique. But to somehow standout and evoke that kind of reaction in a place that sees bone cancer and radical surgeries everyday, it's pretty amazing. I'm sure it doesn't hurt that my surgery is nearly unheard of, even for them. But their amazement and enthusiasm stems from me being ahead of the game and progressing much faster than anyone ever anticipates. In short, they managed to make me feel special and pretty good about myself.

I want to touch on this quickly because I did mention it in my previous post. The other big moment of the day was that I went to work with my forearm crutches rather than the full length ones. I was too nervous to take the subway with them, I have twice before but not during rush hour. I didn't see it going well. Instead I took the bus and a streetcar. It took longer but wasn't nearly as scary. Being at work with them wasn't a whole lot different other than opening doors. We have a lot of self closing doors and they're all fairly heavy, so that was annoying. Other than that things were pretty much the same.

Terrified

Terrified may be a bit strong of a word but it comes pretty close. The night before every follow up appointment with my oncologist and my surgeon is pretty terrifying. At the very least it makes me nervous. Most of the time I don't allow myself to stop and think about what possible news or results I could be given at my appointments. There is really no sense in worrying about something you can't control and with any luck will never happen. I've been fortunate so far and my scans and tests continue to come back clear. I really don't think I have anything to worry about and feel like I'll be receiving the same "boring" old news again tomorrow. I do catch myself wondering "what if ..." every once in a while though and always closer to a follow up.

Funny enough, if anything keeps me up tonight it won't be the thought of my appointment. I've decided to use my forearm crutches and wear my modified shoes to get to work tomorrow. I'll be going straight to the hospital from work for my appointments and I'd prefer to bring those crutches as they are further along in my recovery. The problem is, I'm more comfortable switching back to my full length crutches when I take public transit. Especially during rush hour. Hopefully I'm heading in early enough that it won't be during the worst of it but I know I won't miss it completely and it's going to be busy. I am honestly more afraid for my commute than I am for either appointment. I suppose it's kind of nice. It's a good distraction from thinking about my test results.

Driving? Check!

While home for Easter I had another opportunity to drive. Not just on the back roads or in a parking lot this time but actual driving around. One afternoon I drove my mom and I around town to complete a couple errands. I honestly don't have anything significant to say about the experience. It wasn't difficult and felt so natural I'm tempted to say it was an insignificant event. However, the simple fact that it was so normal and uneventful actually makes it significant.

Seeing how driving around town was such a success, true to my usual perseverance I wanted to take it to the next level. Heading back to my apartment at the end of the weekend I actually drove part way. I drove for nearly an hour, not quite half way back, before switching seats with my mom. I even drove on the 400 (a major highway) so I did get up to 100km/h, or maybe even a little more. If I wanted to I'm sure I could have driven even longer. There was just no reason to push it. I still can't sit for too long without changing positions and this is what will limit how long I can handle driving for.

I felt quite comfortable and relaxed behind the wheel and for the most part I drove with one had, which is pretty normal for me. I did notice, and it wasn't a choice I had consciously made, that I had my other hand resting on my leg just above my right knee. Although it wasn't doing anything or helping in anyway, I think it was comforting in a way to have it there. My hand was "at the ready" if for some reason I did need to act quickly and needed a little extra help moving my leg. Don't read this though and think "maybe you shouldn't be driving than". Even when I'm sitting in a chair or on the coach, my right hand is almost always lightly hanging onto or resting on my right leg. I think it's a bit of a protective mechanism leftover from the early stages post-op. For several months I did need to use my hand to help move my right leg for most actions and even just to keep it from falling over to one side or the other. I was also on constant alert and was very protective of the leg, worried that something or someone was going to bump into it. It was necessary for a while but now it's more of a habit that stuck.

Needless to say, I believe I can put a big check mark beside "learning to drive again"!

Time to Stand

Today I had a shower and stood the entire time. This may seem like a strange thing to write about but I'm sure I've mentioned in a previous post that I normally use a shower bench. I'm home at my parents house for Easter weekend and when I was packing to leave I didn't feel like bringing the shower bench with me. I did bring the bath pillow I use as a cushion, figuring I could always just sit in the bottom of the tub while I showered or simply have only baths while I was home.

One of the most challenging aspects of taking a shower without my bench was step one. Getting in. My parents have deep soaker tubs and when I stand next to it, the lip of the tub actually comes up to my knees. Bracing myself, one hand on either side of the tub, I was able to step/hop in. Once in, I did hesitate for a moment, slightly worried about repeating this again after showering when everything would be wet. I'd cross that bridge when I came to it.

Washing my hair wasn't too difficult but did pose some challenges. I'd say it's pretty normal to use both hands to wash your hair. This means no hand to steady myself. While I can stand for extended periods of time on just my left foot without holding on to anything, I was being extra cautions due to the possibility of slipping. I dealt with this by using my elbow as a contact point with the wall. It meant I could keep my balance in check while still having both hands available to wash my hair.

Really the only other issue was with rising my hair and washing my face. Basically any time I had my eyes closed. For the most part, I just kept one hand on the wall and I was just fine. I'm realizing now that I've listed an issue, even if it was minor, with nearly every step of taking a shower. Nevertheless, it wasn't all that bad. It just required tweaking how I would normally do a couple things. Which I am very used to by now. And for safety reasons I'd say I was much more attentive than in my usual showers.

This was something I wanted to try out sooner rather than later. I know that at some point or another I'm going to go on a trip or stay over at someone's place and have no other option but to stand to shower. Or not shower at all. So it's nice to know it can be done. That being said, I'll be sticking with my shower bench when I'm at my own place.

Real 1st Steps

Oh my goodness. Huge day! It pays to get an extra day of physio in on the weekend.

I've been practicing with one crutch every day at physio for quite some time now but this was the first ever go at it without anything. No crutches. No cane. No nothing. I took four steps today without my crutches! There was a little hop to the step as I transferred my weight to move my left foot ahead but I did move a short, very short, distance forward. They were like toddler sized steps. My physio was so close to me the whole time. We were both so excited but nervous for me to try it without my crutches. She not only wanted to be extra close in case I had to grab onto her for support but I needed her that close to give me the confidence and assurance to try taking those couple steps.

Oh by the way, it's April 1st if you didn't know. So happy April Fools. In all honesty, I am making a lot of progress but it will still be awhile before I try any steps without at least one of my crutches. It is true that nearly every day I practice walking with just one forearm crutch, with my modified shoes on. I'm able to move a lot faster and with much more confidence now. This past week we took a couple new videos at physio. One showing me walking sideways & backwards. The other is of me speed walking. There is obvious improvement over videos shot even a month ago.

It's interesting and fun for me to compare similar videos, doing the same activity, from over the past 5-6 months. Every video depicts me performing the particular activity to the best of my ability, up to that date. There are many videos we've shot that I remember us being so excited about. It was either the first time I successfully did something or it's just a big improvement from the last time I performed it. Then a couple weeks/month later we take another video knowing I've improved but not seeing just how much I've improved until we compare the videos. Then the original video we were so excited about to start with becomes more of the "before" video for the new progress. This was the primary reason for documenting stuff at physio. It's hard to really see how much progress is being made when it's gradual over every single day. Comparing videos from throughout reminds us and shows just how drastic the improvement has been.

Totally Worth It

With a new season comes a change in footwear. As the weather warms up, out come the flats and flip flops. It often inspires the "need" to buy new shoes as well. If you combine the two, new shoes in a style you haven't worn for awhile, they will likely hurt to wear at first.

I bought new flats yesterday and wore them out knowing they would probably hurt/cut my feet by the end of the night. We've all been there. Right ladies? Just as I had anticipated, I ended up with a small cut on the back of my left heel. It made perfect sense seeing, for the most part, that's the foot I do all my walking with. Usually one spot in particular, or one foot over the other will cause the most pain.When this happens you end up favouring that foot to compensate. That's where I ran into a problem. I couldn't change the way I was walking to alleviate any of the pain. I had no choice but to continue walking the exact same way. I tried relying on my crutches a little more and could balance on them whenever I was standing still but that was about it. As far as breaking in new shoes go, it wasn't the worst. It was just frustrating not to be able to change up the way I was walking to make it feel a little better. Although, once the cut/blister is there, I don't know that there is ever really a way to make it feel better as you walk. We definitely try but I think generally speaking, we are only successful in making ourselves look funny as we hop or limp along, longing for the moment we get home.

After a couple more wears I think they will be comfy shoes that I'll end up wearing all the time. At least I hope so.

Gooooaaaalllllll ...Post

This past weekend our sledge hockey season came to an end. We had one last practice Saturday before our final game on Sunday. Unfortunately we lost the game but had a lot of fun despite the outcome. Unlike our last game, there were two other females playing on our team this time. In the third period our coaches put the three of us on the same line together, all as forwards. It was actually a fantastic line.There was great communication between us and some great passing. We played and treated each other as equals, which not all the players do, and by doing so our shifts had some great momentum. By far my favourite line of the season.

While on with the girls I even had a shot on net. I came so close to scoring my first goal but it went off the post. Do to the direction and speed I came into the shot with, I actually ended up in the net after the shot. There just wasn't enough room or time to stop or get around the net. I did manage to avoid the goalie at least. My intention was not to take him out. I really hadn't planned to end up in the net though either. I didn't actually know I had hit the post until we came off and one of the girls mentioned that I'd hit it. It was nice to know I hadn't missed entirely. You know what? After only playing for 10 weeks, I'll take a shot hitting the goal post. Of course it would have been amazing if I'd scored in my first season but I'm still pretty proud.

To conclude the season we also had an awards party. I was given the "Spirit Award". Seems pretty fitting.

I fully intend to play again next season but have yet to decide if I will try out for the Rep Team or play on the Select Team again. Either way I have a couple months to decide. I'm looking forward to playing the entire season next year instead of joining halfway through.

Now to find a new sport to try this spring/summer.

Taking My Life Back: Step 241

What is Step 241?
Going back to work.

Why is it Step 241?
My first day back to work came 241 days after my final discharge from the hospital (following my stay post surgery). I figure "Taking My Life Back: Step 1" was the day I was discharged. Every single day since I've been working towards taking my life back. Some days stand out more than others but every moment, no matter how small, has been fighting towards the same goal.

When you are diagnosed with cancer, you aren't given a choice. It's this major life change you have no control over. You have this new "way of life" you have to just go with. Getting your life back to normal is a different story. It's all up to you. It's not just going to happen by itself or overnight. It's a conscious decision you have to make every day until your life is back to the way you want it. The way it should be. This is why I've said taking my life back and not getting my life back. You have to make it happen.

Work yesterday was good. Thanks to the gradual return to work plan I only had to go in for 4 hours. I spent the first 2 hours being caught up on everything that had changed in our department since I left 16 months ago. For the remaining 2 hours I started learning the new program we use for nearly everything now. I have several more hours of training to go on that. I couldn't help but start yawning after about 3 hours of being there. It's the longest I've had to pay attention or concentrate on anything in over a year.

I was tired out by the end of the 4 hours but it wasn't too bad. My tailbone was quite sore though. Without my right sitting bone, my tailbone now takes a lot of the pressure and weight when I'm sitting. Having to sit properly in a chair for hours on end is going to be my biggest challenge returning to work. Arms and tailbone were still a bit sore today, more than usual, but nothing too extreme.

Thank you to my amazing girlfriends who sent me "good luck on your 1st day back to work" flowers and card. Unfortunately I couldn't come up with a way to carry them home with me so I put them out in the common work space to brighten up the place. Before leaving I told one of my co-workers he was in charge of making sure they were still alive on Friday, when I'll be in for my next 4 hour day.

Nervous Excitement

Back to work I go! I have been off work now for exactly 16 months. I can't believe it has been that long.

I began the process of returning to work at least a month and a half ago. Between informing my long term disability contact / insurance company that I was ready to go back and actually going back to work several things have happened. I had an hour and a half phone assessment/interview, various emails between me and my insurance, contact between my insurance and HR where I work, the drafting of a gradual return to work plan, minor tweaking of the plan, more contact between insurance and HR, signed approval of the plan from my surgeon, and finally an official back to work date. It would seem returning to work is more difficult than going on leave.

Tomorrow, March 20th 2012, is my official first day back since November 20th 2010. Again, it seems unreal that it has been so long. In some ways it feels like only a couple months ago I was working full time. But when I think of all that I've gone through and everything that has changed in my life since I was last at work, the 16 months seems much more believable.

I am very excited to be returning to work. I'm looking forward to having more to do with my days. It will also be really nice to have to use my brain again. Although it may take awhile for some of my braincells to wake up, they've been hibernating for quite some time now. Being around others and having people to socialize with, even if it's work related, will be fantastic. And while I did have long term disability coverage and was receiving a reduced percentage of my pay, I look forward to earning my full salary again.

Despite the excitement, I'm also really nervous about returning to work. It's not that I truly believe I can't handle it or won't be ok, I wouldn't have said I'd go back if I thought that, I just can't help but worry about it. I'm afraid it will be too much for me, that I'll be exhausted or really sore. I'm concerned I won't be able to sit in an office chair for that long. At the same time I hope I don't end up standing or walking around too much throughout the day either.

My return to work will be a gradual one which helps alleviate some of the stress and worry about it being too much to handle. I'm only actually working 4 hours tomorrow. The same goes for Friday. My progression back to full time is spread out over 7 weeks. Each week increasing the number of hours and/or days. On the 8th week, May 7th, I'm scheduled to return to full time hours. I work for a great employer and have a manager and co-workers who I'm sure will be really helpful and understanding and will make this an easy transition back for me. Besides, there's no turning back now. The plan is already in place.

Now I just need to remember where I put my set of work keys.

Brreeeeeeaaaaakkkk

A good friend will let you drive their car. A great friend will let you drive their car post surgery, knowing full well this is part of a test/experiment to see how well you can drive now.

We had talked about it before, that one day maybe she would let me drive her car so I could practice and see how well I could drive. When we got together on Friday she surprised me by suggesting we give it a try. I was excited. Yes, I did try driving about 5 months ago. It had gone well but I wasn't confident enough in my abilities at that stage to drive anywhere other than the back roads by parents house. Not knowing if my improvements over the past months would translate into more functional driving, we opted to try out my skills in a small, quiet parking lot to start.

The first thing I decided was that I won't be able to wear my modified shoes while driving. My leg length discrepancy comes from the hip area, so the distance from my knee to foot hasn't changed. If I was to leave my modified shoes on it would be like driving with platform shoes on. Because those were the shoes I was wearing at the time, my friend and I switched shoes. Or rather I just took hers. Luckily we wear the same size.

I practiced moving my foot back and forth between the gas and break pedals several times before even starting the car. A couple times just to get the feel of it and go through the motions. Then a couple times as if I had to slam on the break quickly. Next was to give it a real try. My focus was on "foot work". I've been driving for 11 years and surgery didn't impact any other aspects of my ability to drive. We did one length of the parking lot coasting a bit and then breaking, coasting, then breaking. Typically this would be really boring but I was having fun. It's a little like being 16 all over again and learning to drive, but with so much more knowledge of how to actually drive. It was also quite entertaining because my friend and I would both yell out different things like STOP, pedestrian, kids, and I'd slam on the break. So we were laughing most of the time. I turned around, accelerated the length of the parking lot and stopped quickly at the end. Simulating a more realistic driving scenario.

It all felt very natural. After a little bit it wasn't really necessary for me to consciously think about my right leg and how it was moving. It felt similar to all the years I'd been driving before surgery. Over the last 5 months my control and ability to move my right leg has improved so much. It helps too that my lower leg (knee to foot) functions much better than actions lead by my quads. It's also very fortunate that driving doesn't require any real weight bearing.

I think it's safe to say driving will not be a problem for me. Living in the city it's not often I drive anymore, however, I am relieved to know it's not that I can't drive.

Thanks again for trusting me to drive your car! You know who you are :)

Warning to Physiotherapists

Actions like this will not help change your profession's overall reputation/stereotype.

Personally, I love my physiotherapist. I can't say enough great things about her. There are, however, some unflattering labels some may use to describe physiotherapists in general. Examples would be names like "sadists" or comments such as "they torture you." These may be said jokingly or sometimes with some strong belief. But like I said, I'm a fan of mine. That's not to say there aren't days where I believe she's enjoying my pain, at least a little bit.

Earlier this week she had me working on abs. I had already done a couple sit-up variations and was moving on to the next set which was probably the most challenging/strenuous of those I was doing that day. They would have been tough to do just on the floor. Lucky me, I was also doing them on an incline. I started to struggle but was pushing through the pain. With just 3 left to go, I didn't get more than a couple inches off my back and basically fell back down. I gave it another attempt but it just wasn't happening.

That's when it happened. My therapist was so excited! I think this may have been the happiest I've ever seen her. Right up there with when I took my first steps with just one crutch but even more cheerful. This was the first time she had ever completely fatigued me. She definitely pushes me and I've struggled to finish sets before and on several occasions it has hurt to move the next day. But I've always managed to bear down and get through the exercise, whatever it is. Not this time. I think I made her day right then. Pretty sure she even did a little dance in the midst of her excitement.

So in moments like this, it's hard to argue with statements like "physiotherapists are sadists." If I wasn't completely convinced she was enjoying my pain then, it was confirmed the following day. I was in working with my rehabilitative Pilates instructor and as my physiotherapist told her what had happened the day before, you could see all the excitement and joy came back over her. I can't blame her. It was a first. And I still love her. Even with all the torturing.

I did finish that set. After giving me a minute to recover, she was great and encouraged me through the last 3 reps.

I think maybe I should add a small disclaimer to this post. Something along the lines of, "upon completion of reading this post, one is not allowed to torture me for writing it." Because I know she's going to read this.

Unexpected Highlight

Never would I have imagined this being the highlight of my day. Such a simple thing that a year ago I wouldn't have had a second thought about doing but that has seemed almost impossible since moving back into my apartment.

Let me take a step back first to explain something. I live in a walk out basement so all the windows other than those in my living room, which is at the front, are a little smaller and higher than normal windows. So typical basement windows. The window in my kitchen is also directly above the sink so to reach it you also have the width of the counter to deal with. I'm only 5'5" so to reach and open this window I've always had to stand on a chair or kneel on the counter.

I realised a couple months ago, when I set of the smoke detector cooking something, that I couldn't reach the window to let some air in. The thought of climbing up onto a chair and balancing while I opened the window seemed like a very bad idea and a fairly impossible task at the time. As of that moment and with every burnt bagel or over cooked item since, I've been reminded that I can't open my kitchen window.

After 8 months on crutches, I'm not just better at walking around but my ability to balance standing still without the crutches has improved immensely. I've also started trusting myself and what I'm capable of doing a little more all the time. With the amazing weather we've been having and today potentially being the warmest it's been yet, I came home from physio and started by leaving my front door open to let some light and fresh air in. After a little while I decided it was so nice out that I had to open up the rest of the windows in my apartment.

I started with my bedroom. Although it was more of a challenge than it used to be, it wasn't terribly hard. I did have to stand on the corner of my bed and lean over my dresser but I got it open. Feeling pretty good about having opened that window, I walked into the kitchen. I did pause for a moment before I did anything. I'm afraid this probably sounds a little bit ridiculous but think of a time when you were about to attempt something physically difficult that seemed almost impossible, it could be anything, but that you were determined to accomplish. There was a quick pep talk going on in my head. "You can do this. You can definitely do this. Of course I can do this."

I pulled a chair out and positioned it by the counter. Then with just another second of hesitation to decide which side would be best to jump up from, I hopped up onto the chair with my left foot. I had to let go of my crutches at this point because standing on the chair they were obviously to short to be of any use. I rested them against the counter while I leaned over the sink and counter to open the window. Success! Now to get down. It didn't seem as safe to hop off the chair as it had been to hop on. Not to mention it would be backwards if I did. Instead I was able to squat down and sit on the chair and get off that way.

The moment I was back on my feet, crutches in hand, I realised how happy I was and kind of proud. I almost immediately started laughing at myself though. I wasn't oblivious to how unusual it was to be excited about opening a window. I wish accomplishing this wasn't such a big deal and that it was once again just another everyday task I'd do without thinking about. In all the times I've opened that window in the past, I never would have imagined it would make me so happy to do so one day.

A couple hours later when it started to cool off outside I had to do it all over again. I wasn't quite as excited because I already knew I could do it but I was still feeling pretty good about myself when I got it closed.

Physio: 100th Session

Thursday was my 100th physiotherapy session since being discharged from the hospital. There isn't enough time to sit hear and list everything that has changed since I started physio, what has improved, has become possible, or even too easy to do. It's amazing what the human body can relearn or find new ways of doing when the 'traditional' way is no longer an option. The difference between me 100 sessions ago and today is pretty incredible.

I've put on 20lbs since beginning physio and now have visible muscle definition. My energy level and strength have improved exponentially. I have amazing control over my right leg compared to when I started but there is still much room for improvement. Every once in a while I'll be doing an exercise or trying something new and there will be this moment of, "can you imagine doing this back at week one?" It's not even just that physically I wouldn't have been able to do the activity back when I started but it would have been hard to even imagine doing it one day in the future, at least this soon.

I still love everything about the clinic I am going to. I consider myself very lucky because after 100 sessions in just under 5 months, I could easily have been sick of the place and the people by now. I really couldn't have a more opposite feeling though. The entire staff is fantastic and really friendly. And not just those I've been treated by. The individual and collaborative knowledge at this clinic is amazing. Even with such a rare situation and unique reason for needing physiotherapy I feel very well looked after. They've created such a great space and positive atmosphere that I look forward to going even if I know I'm going to be "tortured" that day.

I look forward to my next 100 sessions and am interested to see how far I've come when I hit #200. I honestly have no guess as far as what I will be able to do come this time or what I'll still be working towards. There has been a lot of trial and error in my recover and there has never been a timeline. We'll just have to wait and see.

Champagne Week Continued

I love celebrating my birthday. Dinner the day of is fun but I always look forward to having a big celebration with all my friends on the weekend. This year was no different. Except maybe that I was even more excited to have a big celebration. This was going to be a party to celebrate turning 27. A celebration to make up for not going out last year. And to celebrate 8 months since my surgery / being "cancer free" (although still not medically accurate to say). This would really be my first big night out since everything began a year and a half ago.

My friends had a cake for me that said "Happy More Than A Birthday" because they knew the party was for much more than just my birthday. Unfortunately I had no idea what the cake said when I first tried to read it. There were so many words to fit in. But I thought it was really sweet once I knew what it said. They also had another personalized t-shirt made for me which I LOVE! I had one of the greatest nights ever. I had tons of people come out from several different circles of friends. Some friends who I've only know for a couple months, others who I've known for many years, and a couple I hadn't actually seen in close to 5 years. Every person that came out on Saturday added to one very unforgettable night for me.

It was hard to believe I was finally out celebrating. Months earlier, back in October or November, I was making a list of "everyday life" goals with my physiotherapist. I added to that list that I'd like to be able to go out and have a couple drinks while still being able to walk with my crutches by the end of February for my birthday. It had seemed so far away at the time.

It was a bit of a challenge to move around the bar once it filled up. My friends were great when it came to leading the way and clearing a path for me so I could get through. They had to be a little more forceful with some people who just weren't paying attention but I was never bothered by it or by anyone that bumped into me. I'm sure I would have been just as oblivious to "the girl on crutches" if the roles were reversed. I always made someone come with me to the washroom because you had to go down a flight of stairs to get to them. I got an offer from a guy to carry me up the stairs the one time but obviously declined. I couldn't see that being any safer than me doing them myself. It was entertaining how many random strangers came up to me throughout the night and told me what a trooper I was or how awesome it was that I was out on crutches. None of them knew that crutches weren't anything new to me and it wasn't like I could just postpone the celebration until I was off the crutches in a couple weeks. I've accepted them as part of who I am and I'm not going to alter more things in my life than I have to.

I lasted the entire night. Right until the bar was closing. I even spent part of the night on the dance floor (dancing as best I could).  I never got too tried, which I had been a little worried about. I think I was too exciting and having too much fun to think about my arms or left leg getting tired or sore. The difference one year can make is absolutely incredible. Last year I spent the night in with my close girlfriends and after a couple hours of sitting around chatting, I was absolutely exhausted. Fast forward a year and I can stay out all night even on crutches. Some people wonder how I can be so happy and positive all the time. It's because, in my books, life is really good right now.

Champagne Week

Last Monday I turned 27 on the 27th, making it my champagne birthday. I wasn't just excited for this birthday because it's my favourite number. I was really excited for the simple fact I was able to celebrate my birthday, unlike last year. Turning 27 also seems extra special because I am now an age that has no direct association to cancer. Years from now when looking back on different times in my life, 25 will always be the year I was diagnosed with cancer. 26 is how old I was when I fought most of my battle with cancer and underwent surgery. Now 27, the focus is on physiotherapy and getting my life back to normal. A much more enjoyable chapter in my life.

Every year my girlfriends and I get together to watch the Oscars. This year it fell on the night before my birthday. They didn't just do one thing but several different things to make the night extra special for me. Not only were all the snacks a selection of all my favourite candies and treats, they also made cupcakes and dessert squares. There was champagne to celebrate it being my champagne birthday. And maybe most unexpected of all, they even invited another one of my close friends (from "outside" this group of friends), who all but one of them had not met before. I felt spoiled and unbelievable lucky to have such amazing friends and it wasn't even officially my birthday yet.

We were all heading home just minutes before midnight. At about 12:02am, February 27th, I thought to myself "this birthday is already better than last year." And I wasn't even basing that on the past 5-6 hours, just the last 2 minutes that had passed. It only continued to get better from there.

My birthday was on a Monday so naturally I had physiotherapy that day.  This is where my very unhealthy day began (although it actually started with the night before). My therapist made grasshopper pie for me. Oh so sweet and oh so delicious! We all had a piece before I did any physio. As I was finishing up my session, the girls from the front desk came back and surprised me with cupcakes. Homemade yes, but if you didn't know it you'd swear they were purchased at a bakery. They were so perfect looking and tasted just as good. One of the other physiotherapist at the clinic wanted to get me a drink to go along with my cupcake. I don't drink coffee and everyone knows my love of Pepsi, so she went next door to get me a can of pop. Definite sugar high. But wait, I still had to finish my cardio. So I got back on the Elliptical with my pop. I figure you're allowed to be unhealthy on your birthday.

This was just the start of my very delicious day. After physio my friend took me out for a late lunch. I ate until I couldn't possibly eat another bite. She dropped me off on her way back to work and I was home for about an hour. At which point I headed back out to meet up with two different friends for dinner. Sitting on the streetcar on my way to meet them I just kept thinking, "oh my gosh, I'm so full." I already knew what I would order when I got there. I had picked the restaurant based partially on the specific meal I wanted to eat that night. The good thing about this was I had picked something completely different for lunch. Surprisingly, when our meals came I ate most of mine without a second thought.

Back at home I made myself comfy on the couch and turned on the TV. I was way too full to attempt anything else. Or even move. Not long after arriving home I got a call from my friend who had already taken me out for lunch. She was parked outside. The "crazy" girl had something else for me for my birthday that she'd forgotten to give me earlier. She ran it in because I'm obviously terrible at carrying things and not the fastest when it comes to running out to meet someone. She had to take off so I opened the present after she left. Nightmare and wish come true all at the same time. Four different types of cookies. I resisted opening any of them that night as there was no possible way I could fit even one bite of a cookie into my stomach without severe discomfort. It didn't take me long to break into a bag the next day though. I've yet to finish them all. It doesn't help that I received homemade cookies in the mail from another friend two days later too.

I think my birthday can be summed up as the day of food. I think everyone is in on the plan to fatten me up.

Big Step Up

As my mobility continues to improve the one thing that has remained about the same is my ability to go up and down the stairs. There have been little changes, my balance while doing them has improved and the action has become almost second nature. As a result I can take the stairs a little faster than I had before but it still seems painfully slow. On Friday I took a big step forward with the stairs.

I finally have a pair of modified shoes that have the correct lift height on the right (2.5") and are still very stable (unlike the first pair made that was tapered at the bottom). Now that I have the shoes I needed, I wanted to try going up and down the stairs just as the average person would. One foot per step. As is often the case when I go to try something new or increase the difficulty in whatever mobility exercise I am doing, there was really no way to tell if I would be successful or not.

Although I have been working on taking the stairs with just one forearm crutch, this was definitely an exercise requiring two. Not only was I able to do the stairs properly (with the addition of crutches of course), it was actually fairly easy. It felt so good to walk up and down the stairs "normally". It was the best feeling to be doing them at a good pace that was comparable to the speed at which any of my friends might casually walk a set of stairs. Like everything I'm relearning, it's going to take practice and repetition before it comes naturally. My therapist had me do it several times so we're already working towards making it second nature. This was a pretty big step for me so we shot a video to document my progress. It will also be great to have weeks, months, even years from now to see how much I've improved since that first attempt.

Thin Blades

Underneath each sledge (used to play sledge hockey) there is either one blade or two. Your seat is mounted directly above the blades so the closer together they are the less stable the sledge is. When you are first starting out you begin with two blades set wide apart. As your balance and skills improve you progress to having the two blades closer together. Eventually you may even switch to having a single blade, but not until you are quite advanced.

Being new to the sport, I've been using a sledge with two blades set wide apart. If I was to estimate, I'd say there is about 4inches/10cm between them. That is, I'd been using this sledge up until this weekend. Our team for the game last week was actually a combination of two teams/levels from the same sledge hockey program. We practice on different days, at different arenas and my sledge was accidentally brought back to the wrong arena following the game. Thankfully the rest of my equipment, padding, helmet, etc. made it back to the right place. This meant I would have to choose a different sledge for practice though.

We have a couple extra sledges but not many small ones. Finding a sledge that's the right size/fit for you means looking at the size of the seat (bucket) and the length of the sledge (most are adjustable but only to a certain extent). Lastly, I was also looking at the blades. The problem was there wasn't a sledge with a small seat, that was adjustable to the right length and had wide set blades. There were a couple that had the right blades and would have been the right length but the seat was too large. I would end up sliding around in it and it'd be difficult to maneuver. The smallest seat on the extra sledges, which was still a little bigger than I'd like, would work but it's blades were much closer together (thin blades). They were only about 2inches/5cm apart.

I decided to give thin blades a try with the full expectation of tipping over way more often than usual. It requires a lot more work from your core to stay balanced on thin blades compared to wider set ones. For this reason, in that moment I was very thankful I had opted to skip the abs section of my usual work out at physio on Friday. I had done so with hockey in mind.

I did surprisingly well on the more advanced sledge. Not even just well considering I've only been doing this for 6 weeks, well for any player transitioning to thin blades. I did tip over more easily and frequently than usual but not as much as we'd expected I would. My coach even said he thought my turns and stops were much better in this sledge. He was definitely right. They seemed to come a little easier for me with the thin blades. I think being of such a slender build and lightweight, the narrower base made it easier for me to get up onto one edge/blade in my turns. While getting off the ice, the woman who is basically our team manager also said I had done a really good job on the thin blades. She even jokingly said I was not allowed to go back to using my other sledge. Although initially said as a joke, we both agreed that I will likely stick with the thin blades. I did well on them and am eager to develop my skills in the sport.

1st Sledge Hockey Game

This past Sunday I played in my very first sledge hockey game. I was super excited but kind of nervous. I've only had 5 practices, in my entire life, and wasn't sure how well I'd do in a game. I felt like I'd been doing well at our practices and have been keeping up with everyone else, who have been doing it longer, but I wasn't sure how well what I'd learned would translate into an actual game.

No matter the outcome of the game it would always be kind of special as it was my first. A couple of my friends, who love to go above and beyond the average support of any friend, managed to make it even better by coming to watch and cheer me on. It was an away game so 3 of my girl friends hopped on a bus for an hour to get there. A 4th friend of ours, who lives there, picked them up from the bus station and brought them to the arena. My parents also made the hour and a half trip from home, coming from the opposite direction. I felt pretty special having 6 people there cheering me on. Complete with bright green signs. It did make me a little more nervous knowing they were there though. No one had ever seen me play before and I didn't want to embarrass myself. I'm very aware that sometime how we feel or think we look like doing something is far from how we actually look doing it. But non of them had seen sledge hockey being played before, other than a couple videos I showed them online, so I was excited for them to see the game in general and to have a better sense of how it's played.

We did win by the way! 9-8 YAY!!! Going into the game everyone kept saying how good the other team was. I kept thinking "oh great, my first game and they're a really tough team". But in the end, it made for a more exciting win. We definitely had one really great player on our team but the other team had a few. Enough that they could have at least one or two really good players out on each line. Our goalie was amazing though. As a team we fought for that win but our goalie is really what kept us in the game. And it doesn't actually matter but as a side note, I was the only girl playing on our team.

Personally for me, I have 3 plays/things that stand out as what I'm most proud of from the game. One being the 2 on 1 I a was part of in the first period. The best player on our team got control of the puck and I was able to take off down the other side of the ice and keep up with him. I was in perfect scoring position. Unfortunately, he didn't pass to me. He did score though, so I can't be too annoyed.

I'm also proud of myself for winning all but one of the face-offs I took. At least 5. I think the most impressive part about this was that I'd never done one before. I hadn't even been shown how. I had been playing left wing but we changed up our lines quite a bit throughout the game and so occasionally I would play center. When one of our coaches called out the next line and I was playing center I realised I better figure out how to do a face-off and quick. The guy next to me had been playing for a while so I asked him for some pointers. That 30 second conversation is all I had to go on.

Lastly, but certainly not least as it was probably the most valuable contribution I made towards winning the game. With less than 3 minutes left in the game our best player got a penalty. We were only up by one goal and now down a man. The other team was deep in our end and I managed to ice the puck. Without an icing call of course because we were short handed. The only thing I could think of in the split second before shooting the puck down to the other end was "oh my gosh don't mess this up". I was worried I'd fan on the puck completely or the guy who was on me would steal the puck away or maybe if I did shoot the puck down the ice it wouldn't have the power and wouldn't get very far. The last couple minutes of the game were pretty intense but we just had to hold onto that one goal lead a little longer, I didn't want to screw it up. There was no need to worry though, I was able to send the puck to the other end and we were able to run out the clock in their end.

I was thoroughly exhausted following the game. Especially seeing I had played the day before as well. It's hard sometimes when I need my arms to walk. It was totally worth it though. I had so much fun.

Here is a video clip from the game. And a second video that shows I have the best friends/cheerleaders EVER!!! They even cheer for me between plays.

Bigger Stronger Heavier

16 weeks ago during my second physio visit, my physiotherapist took measurements of both my legs. She recorded the circumference around three separate areas of each leg. Last week, after 75 physiotherapy sessions, we decided it was time we took the measurements again. Especially as you could now see a visible increase in their size.

While my right leg is still a little smaller than my left, both legs have increased by about the same amount. In 3.5 months the circumference of each of my calves has increased by over 2cm. My lower quads by nearly 6cm. And my upper thighs by almost 8cm. I suppose this helps explain how I've been able to put on so much weight. Or should I say, where I've been able to put on some of the weight. My arms are also stronger and noticeably larger than they were 4 months ago. I have been walking with crutches for nearly 7 months now and going to physio 5-6 times a week for 4 months, it'd be shocking if they weren't stronger.

Over the last 4 months I've managed to put on just about 20 lbs. I'm now only a couple pounds shy of weighing what I have weighed on average for the past 9 years. The healthy years anyway. This doesn't even take into consideration the 11 lbs removed during my surgery. I have finally put on enough weight that I no longer feel it necessary to add on or explain the 11 lbs to make what I weigh sound less unhealthy. I won't stop here. I will continue to push myself (so will my physiotherapist) and become stronger and put on more weight in the process. Who knows, maybe I'll be able to beat my record for the most I've ever weighed (at the time I was on my university's rowing team). 18 lbs to go! ... 7 lbs if I get to count the missing 11 ;)