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.
Sunday 29 April 2012
Wednesday 25 April 2012
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.
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.
Wednesday 18 April 2012
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.
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.
Monday 16 April 2012
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.
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.
Thursday 12 April 2012
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"!
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"!
Sunday 8 April 2012
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.
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.
Sunday 1 April 2012
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.
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.
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