Bittersweet

SSHHHOOOOOOOOOEESS!!!

My modified shoes were finally ready to be picked up today. There is nothing wrong with my foot so I don't need completely custom shoes made but I do need a significant lift on the right side. Missing the right side of my pelvis means I have no hip socket to hold the head of my femur in place. Therefore, when putting weight onto my right side, the scar tissue that has formed in the area compresses and my femur/leg is able to "travel" higher than normal, having no bone to stop it. This results in a leg length discrepancy (LLD) of about 3 inches.

Having my new shoes is very exciting. They mark the next big step in my recovery. Having shoes that compensate for my LLD should really improve my ability to walk. I will still need crutches to get around but I've been doing a lot of work at physio practicing walking with just one crutch and wearing these shoes should definitely help make that easier. I've worn the shoes around the house a little bit already but I'll really find out how well they work tomorrow when I return to physio (I've been off/home for Christmas this week). One thing we will be taking a close look at will be the lift height. Because my LLD only occurs (to its full extent) when there is weight on that leg, it's difficult to take an exact measurement of the discrepancy. For this reason our measurement of how high my lift should be may not have been exactly correct. I consider this my trial pair of shoes, a starting point. After wearing them for some time I hope to know whether I need my next pair made slightly smaller or larger. Or maybe they're the perfect size.

Leading up to today and even the drive over to pick up the shoes, I've been nothing but excited. The moment I had the shoes and was driving home with them I had mixed emotions. The logical side of my brain knows that these shoes are a big step in my recovery and have the ability to make a significant difference in my life. Another part of me really wishes I didn't need the shoe at all. It's not even that I wish this whole thing never happened to me (although that would be ok with me too) but I do wish I didn't require such a large shoe lift, for the rest of my life. The lift isn't all that subtle, it is 3 inches. It's pretty obvious. I don't really care what people think, but no one wants to be the girl with the ridiculously high shoe lift. It probably doesn't even look that bad but it's still new and seems so obvious right now. I'm sure after wearing the shoes for a while I'll think about it less and less and it won't feel like such a big deal. It will eventually become my normal. But for now, I wish I didn't need it.

A Much Better Christmas Eve

My family never has any big plans for Christmas Eve and this year is no different. The one thing that has changed for us this year is I believe everyone is just a little more appreciative of the low key day. This time last year I was in the hospital, waiting for a blood transfusion and really hoping my doctor would change his mind and agree to let me go home. A couple days earlier I had been hospitalized for febrile neutropenia, a fever with an abnormally low number of white blood cells (aka a fever after chemo), just 4 days after getting out of the hospital from my last chemo treatment. Not having any white blood cells to fight off / protect me from whatever had caused the fever, they really didn't want to discharge me.

Yes, I was the one stuck in the hospital but it wasn't just me who was effected by this. My mom had spent the last couple days trying to plan out how to have Christmas dinner in the hospital. Figuring out what she could make in advance and what could be made there using just a microwave and a kettle. My Dad had spent most of the day in the hospital with me instead of doing last minute shopping like he normally would the day before Christmas. Add to this, he had to wear a mask and gown the whole time because I was in reverse isolation. My brother and sister had to do the same when they came to visit as well.

Lucky for me, my doctor did reluctantly let me go home late in the evening Christmas Eve. I had to have the blood transfusion and I had to agree to come back in for a blood test in a couple days. There was also a good chance he would admit me back in to the hospital after that blood test. All of this was ok by me if it meant I could go home for Christmas.

It wasn't fun but it definitely could have been worse. At least I got out in time for Christmas! Simply being at home this Christmas Eve and not in the hospital is one thing I'm not taking for granted.

First Hair Cut

It's been about 6 and a half months since my last chemo treatment and slowly but surely my hair has been growing back. There was a brief period when I thought I had a chance of it growing back straight but it wasn't long before it was obvious it would grow back curly/wavy just as it was before treatment. In the last couple weeks it went from being similar to a pixie cut to more of a shaggy look but not quite because it has a very distinct curl to it. I decided it was definitely time to get it cut. Not to make it shorter (because I do want to grow it out, I've always had long hair) but to style it. Then as a surprise / Christmas present, a friend of mine told me she wanted to take me to get my hair done. Yay!

I didn't really have a plan or preference of what I should have done. I knew I wanted the back and sides cut shorter, giving the top a chance to grow out more. And we agreed that I should do something really different from my usual hair. I'm lucky in the fact that I get to experience my hair at every length possible, a chance not many woman get or are daring enough to take, so why not take advantage of it and try different styles. Never having hair this short before, I really didn't know what would look best but figured I would just ask the hairdresser what he/she suggested and go with it.

I'm not sure who was more excited about me getting my hair done, me or my friend, which made it really fun. I was so excited leading up to getting it cut, yet nervous at the same time. I was really excited to be doing something with my hair and trying a new look but the idea of cutting my hair after waiting months for it to grow was kind of scary. The one thing that made it easier was not having any real specific expectations for how it would look when it was done.

How did it turn out? I'm very happy with the cut. I think the only thing I'd want to change about it is I'd like the bangs to be a little longer. But seeing they didn't touch the front of my hair, other than to even it out a bit, that isn't something that could have been changed. I'll just have to wait for it to grow some more. I dyed my hair as well because why not. I'm not 100% used to it just yet but I do like it. It's definitely different and that was the point. My absolute favourite part about my new look, whether it suits me or not, is that it was my choice. For the first time in over a year I actually had a say in what may hair looks like and it's surprising how great that feels.

Physio: 50 Visits and Counting

I've been going to physio for 10 weeks now and am extremely pleased with my progress. If you had asked me 2+ months ago how far along I thought I'd be in my recovery by this time, I definitely would have underestimated. It's kind of surprising considering I continue to set high expectation for myself. Sometimes even including the occasional goal that seems unattainable in the opinion of those around me (not that anyone ever comes right out and says it, but you can tell they're thinking it). Since having my surgery though, I've been surpassing the expectations of everyone around me, from my doctors and physiotherapists (both while in the hospital and now out), to family and friends. It's very satisfying to have surpassed even my own expectations. There are some days when I question some of the goals I have set for myself but having both long and short term goals is what keeps me motivated and focused on working towards a more functional future. The support and encouragement I've received from friends, family, and medical professionals has been wonderful and keeps me positive and setting new goals.

I consider myself extremely lucky to have found such an amazing clinic to go to for my physiotherapy. I really couldn't be happier with my physiotherapist. No seriously, I don't think it'd be possible for me to be any happier! But it's not just her I'm thankful for. I also work with a great woman there doing rehabilitative pilates. She's really focused on correcting and preventing any problems I may have with my spine as a result of missing half my pelvis as well as what may come from being on crutches for an extended period of time. As an added bonus, everyone at the clinic is extremely friendly and makes every one of my visits enjoyable. This may seem like a minor thing but in reality it makes a big difference. It means I look forward to going in for each appointment and not just because I'll be furthering my progress but because I enjoy seeing everyone when I go. Staying committed to a daily physio visit could have been really hard but there hasn't been a day in 50 visits when I dreaded going. My physiotherapist and I realised early on, we were really lucky that we got along so well and liked each other because spending an hour a day, every day, with someone you're not too keen on would surely be less than desirable.

I've mentioned before, periodically we take videos of some of the things I do at physio. Being my 50th physio appointment we thought it would be a great day to shoot several videos highlighting the progress I've made so far. I put the video on my YouTube channel the next morning and in 24 hours had over 100 views (nearly 150 views in just 30 hours), a new record for any of my videos in such a short time. If you would like to see the video, check out Jen Physio - 50 Visits Later. There are 14 other videos tracking my progress over the past 10 weeks here as well and I will continue to post videos of my progress as I go.

Staying Active

I officially registered for sledge hockey yesterday. It starts in January and it's 2 hours, once a week, for 10 weeks. I am sooo excited! I signed up for the Skills Development Program because clearly I don't know how to play. It's designed to teach the basics and fundamentals of sledge hockey. Things like balance, mobility, stopping and starting, and the rules of the game. I'll also have the opportunity to participate in exhibition games against other skill development teams in the area.

If you're wondering, what exactly is sledge hockey? Let me tell you...
"Athletes sit on a kind of modified snow sled that has two skate blades under it and a light metal frame that allows the puck to pass underneath. Each player has two short sticks with a hockey blade on one end and picks on the other that they use like ski poles to propel themselves forward. The rest is pretty much the same as the traditional game."

It was actually a couple years ago that I first thought it would be fun to try sledge hockey. I didn't have any mobility issues at the time, I was just interested in trying it because it looked pretty cool and was obviously a sport I had never tried. Anyone who has known me for a while knows that I love trying new sports. To date I've played/participated in...

• Basketball*
• Volleyball* (court and beach)
• Soccer*
• Cross Country*
• Track & Field*
• Badminton*
• Bowling*
• Curling*
• Dance* (Hip Hop, Jazz, Lyrical, Modern)
• Rowing*
• Gymnastics
• Skiing & Snowboarding
• Indoor Rock Climbing
• Rollerblading
• Kayaking
• Water Skiing
• White Water Rafting

* at a competitive level / team you had to try-out for

I also...

• Coached gymnastics for 5 years (I'm certified to teach competitive gymnastics and recreational trampoline)
• Was an instructor at a sports camp
• Currently have an administrative position in the athletics department at a university

Maybe I should have gone to school for something sports related, but I didn't.

As much as I wish I could continue to play all of the sports I love, I'm looking forward to having the opportunity to try several new or modified sports. Sledge hockey is just one of a handful I'm hoping to try. Others include trying a sit-ski or using modified/additional skiing equipment, sitting volleyball (although I do hope to play regularly again one day but it'll be a couple years before I can even attempt that), and wheelchair basketball. And I'm sure there will be other sports I come across in the future that I'll want to try as well. Who knows, maybe I'll love sledge hockey or one of the other new sports I end up trying more than any sport I've played in the past.

Days that Make Me Think

Once in a while I have a day or moment that makes me stop and think. One which makes me so thankful and appreciative of just how far I've come.

This weekend I went to our annual work holiday potluck. It was at our director's house, where it is every year, and so nearly every element of the party was the same as last year's. The one big thing that had changed for me, was me! While sitting in one of the rooms I had this flashback to how I was doing at last year's party. I had been wearing at least four layers of clothing, no exaggeration, most of which were long sleeve / sweaters. Somehow this hadn't been enough and I ended up sitting directly in front of the fireplace wrapped in a blanket. I know I weighed in at only 77lbs about two weeks prior to that party and so I couldn't have weighed much more than that. I was always so cold.

I can't speak for everyone but I'm pretty certain that the majority of my family and friends would pick this time last year as one of the scariest 'stages' of my journey. If there was ever a time when people were worried I wouldn't survive the treatment, it was then. I was extremely underweight and had only completed one chemo treatment. We were terrified I would lose that much weight after each round and if you do the math, physically I didn't have that much weight to lose.

Another thing I was able to appreciate while at the party this year was my energy level. It's kind of funny to think that at the time, I had felt fairly energetic at last year's party. The reason being, it was the day before my next chemo treatment so it would have been the most energy I'd had since my previous treatment. Looking back now though, I know just how exhausted I had been by the time I got home and even at the party. I am so thankful to have a healthy level of energy once again.

Sometimes I get annoyed when I can't do something or am just frustrated with my situation in general, but then these random moments come along and help me remember how much worse it was a year ago and how far I've come since then. Reminds me I am definitely headed in the right direction.

Something to Think About

This is less about me and more just something I'd like you all to think about / keep in mind. Especially those of you who don't live in an apartment/condo building and put your garbage bins out on the sidewalk rather than the end of a driveway.

Walking up my street tonight took twice as long as usual. It was like an obstacle course. The garbage and recycling bins were scattered all over the sidewalk. There were a couple bins I could barely get around and I was standing there debating if I should step off the sidewalk onto the road to get around them. This seemed like a bad idea and so I shuffled along sideways past them when needed. About half way down the street I actually caught up with the garbage truck going along emptying the bins. Once I made it past the truck, things got easier. All the bins were nicely lined up off to one side of the sidewalk. So it would seem it's the garbage/recycling collectors that need a lesson in keeping the sidewalks accessible. Yes it was an inconvenience for me but I was eventually able to get around all the bins and make my way down the street. However, as I maneuvered around some of the stray bins I was thinking, there is absolutely no way someone in a wheelchair or that was relying on a walker would have been able to make it by all these discarded bins.

So next time you're putting your bins out at the curb ask yourself, "can a wheelchair still get by?" And I'm hoping you won't be satisfied until your answer is "yes". Unfortunately you can only be sure the bin is out of the way until it's emptied, then who knows where they will throw it.

New Accessory

Before physio last Wednesday my physiotherapist and I decided to go on a "field trip". We're always looking to and discussing the next progression to getting me walking. We had been considering the possibility of me getting forearm crutches for a little while now. So what better way to decide if this was a good idea or not than to go try some out. So our "field trip" was to a mobility store. Unfortunately the first store we drove to didn't have them, despite having them list on their website. Thankfully they suggested another place that may have them and we headed there.

There were two different models of forearm crutches at this other store and so I tried each of them out for a bit to get a sense for which felt more comfortable and functional. The plan really was just to see if they would work for me and find out how I felt using them. After deciding which of the two were better suited for me, and because we were already there, I bought them. I would have bought them eventually anyway. The only thing we didn't think of until we got back to the physiotherapy clinic was that I can't walk home with two sets of crutches. Thankfully, I don't live too far from there and so I walked home with one set and my physiotherapist dropped the other set off to me later. (Thanks!)

I've been using my new forearm crutches for about a week now. Walking with them I'm not as stable as using my full-length crutches. Yet! And since each set of crutches uses slightly different muscles, my arms and wrists have been noticeably sorer this week compared to usual. They are definitely taking some getting used to. There have been a couple frustrating moments, nothing major has gone wrong, mainly I'm just slower getting around with them. I've had to remind myself a couple time, "this is just day 2 with these (or whatever day it happens to be) ... it's going to take some practice". Sometimes I forget I've been using the full-length crutches for 4.5 months already. Most of the things I do, I don't have to think twice about using the crutches or where/how to place them. It's become second nature. I'm sure with time I'll be saying the same thing about the forearm crutches too.

At the moment I'd say I use the forearm over the full-length crutches about 70% of the time. I haven't figured out how to carry a plate yet while using them, so I switch to my full-length crutches for that. It's also the full-length crutches I put beside my bed when I go to sleep. Until I'm completely comfortable with the new ones, I'd rather not be half asleep and unstable trying to get to the washroom in the middle of the night. I do walk to physio every day with the forearms crutches, but that is only about 5min away. I have yet to venture any farther than that with them, for that I revert to my full-length crutches. However, using the forearm crutches to go somewhere farther away than physio is my next goal.