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.