3 Weeks Out

It has been exactly 3 weeks since my surgery. I have been out of the hospital and home now for 3 full days (and part of Sunday). What can I say, it's been amazing. That's not to say I haven't run into some challenges and had to adapt to my new environment but being out the hospital is the best feeling. As different as my life is now, being home makes you feel just a little bit like normal.

According to the original "plan" I'd still have 3 weeks of bed rest to go. I can't even imagine how crazy I'd be going right now if that was the case. Instead I've been home and moving around freely with the help of my crutches. It's funny how such an extreme surgery completely changes the way you measure accomplishments and how the littlest things become huge achievements. Here are just a couple things that I'm really excited or proud to be able to do at this point that would normally go unnoticed...

• I'm able to get up and down all 17 steps in my house without any help (other than my crutches)
• I'm getting really good at ripping toilet paper off the roll with just one hand (I need the other hand to support myself so I don't fall off the toilet lol)
• Can get in and out of the truck with very little assistance. I just need someone to grab/hold my crutches once I'm part way in and no longer need them.
• Not only am I able to roll onto my left side pretty easily now but I can get onto my stomach as well. And possibly more importantly, I can get back out of this position.
• I made my own lunch today. Nothing fancy but still needed to get things out and put it together. I still need someone to carry the plate to where ever I'm eating though.

What's next on my list of things to do? Sometime in the next couple days I'm hoping to try out the pool. Haven't completely figured out how I'm going to get myself in and out but I'll figure it out as I go. It's going to be really great to float around and relieve some of the weight and strain on my right side.

83 Staples Later

I am officially staple free! They were removed early yesterday morning. Leading up to the day I definitely had some mixed feelings. I was super excited to know I was getting all my staples removed. It was another huge step in my recovery. At the same time however, I was pretty nervous with the anticipation that it was probably going to be a little painful. No one knew how many staples there were but we estimated it would be approaching 100.

I have to say, it wasn't nearly as painful or uncomfortable as I thought it would be. There were definitely some staples that were more painful to remove than others which I had assumed there would be, but overall the process wasn't all that bad. As my nurse began taking them out I did ask if we could count them because I knew people were going to ask me how many there had been. And I wanted to know how many there had been! We didn't count them as they came out (which probably would have made the process seem all that much longer). She left them in a pile for me and said I was free to count them. 83 staples!!! Not quite 100 but pretty darn close. There is also a small section of my incision that was not closed with staples and had it been I think I would have hit 100.

A big reason I was excited to be getting the staples out was the sooner that happened the sooner I would be allowed in a pool. Although I'm not allowed to put weight on my right side, I am allowed to do some light exercise/strengthening in the pool. This includes using a flutter board and trying to kick with my right leg. I figure the more I'm able to attempt this, the sooner I will be able to start actual physiotherapy. I have to wait a couple days but I should be in the pool in about a week, at which point I'll have to figure out how I'm actually going to get in and out of it.

Physically it doesn't feel a whole lot different having the staples out. However, just knowing they are no longer there make me feel a little more free and healed somehow.

One More Sleep

Words cannot explain how happy I am. I'M GOING HOME TOMORROW!!!!

Tomorrow will mark my 18th day post-opt. This may seem like a long time (and trust me, it was!) but I'm actually getting out much sooner than anticipated. If you were to look at my chart and read the post-opt instructions, it was believed that I would require 6 weeks bed rest (just bed rest, we're not even talking about the days after I'm up and out of bed). I've been defying the doctors' predictions and timelines since day one, so why stop now?! I'm not even suppose to be out of bed yet and I'm going home. Friends, family. Doctors, nurses. No one can believe just how fast I'm recovering and how soon after surgery I'm being discharged. Early or not, I'm ready!

As exciting as it is, being at home is going to take some getting used to. Being in the hospital for so long, where everything you do is very much set to a schedule, it's going to feel a bit strange at first breaking that routine. But I'm looking forward to my own bed, piece and quite in the evening, edible meals, privacy, freedom, the option to go outside, along with 100 other details both big and small.

Looking around my room now, I'm pretty settled into this place. I think it's going to take me a fair bit of time tomorrow to get everything packed up and moved out of here. Can't wait though!!!

Keep On Rollin'

Over the past year I have had many memorable moments, some good some bad. Last night may not stack up quite like the others but it was a very positive night for me. I rolled onto my left side by myself. I know, doesn't sound like much but it's actually pretty huge. Every night for the past two weeks I have wished I could just roll over, get more comfortable for sleeping. During the day I can call a nurse to help roll me but it's such a process that I never want to call at night. I'd be wide awake by the time I was actually comfortable on my side.

Last night, during what felt like the millionth restless sleep, I was trying to get comfortable in the middle of the night because I was stiff and my butt was of course sore. No matter what position I moved my leg to or what angle I changed the bed to, I was still uncomfortable. I think frustration more than anything drove me to roll over without assistance. It took a bit of trial and error but I got there. For me this was another big moment, like when I finally bent my knee for the first time. Oh, such a good feeling!

A memorable night followed by yet another memorable day. Today I tackled an entire flight of stairs. All the way up and right back down without faltering. Each and every day I find myself just a little bit closer to regaining my independence.

Tackling the Stairs

At this point, 15 days post-opt, I am able to get in and out of bed / chairs / bathroom without assistance. Naturally, the next thing on my list of things to learn is how to get up and down stairs. That was today's challenge. I'd love to say "oh yes, I climbed a couple flights of stairs this afternoon." But that would be a bit of an exaggeration. In fact, I actually tackled two stairs. That's right, two. The physio team has a make shift set of stairs that consist of two steps and a railing. This way you can learn the basics without the fear of falling down a flight of stairs. Probably a good idea.

Watching my physiotherapist demonstrate how to maneuver the stairs made me a little bit nervous. It looked like it was going to be kind of difficult / awkward. Fortunately it was easier than it looked and the whole things went smoothly. Mind you it was only two stairs up and then two stairs down. The true test will come tomorrow when I give it a try on a full flight of steps.

Still on my list of things to learn to do myself, rolling onto my side. Even though I'm up and about and moving around more, I still spend so much time laying on my back or sitting. At the moment, those are really my only options when I'm not up on crutches. My poor butt needs a break.

My First Steps

How many of you remember your first steps? I'm guessing you don't. I certainly don't remember mine but yesterday I took "my first steps" for the second time this lifetime. And I will always remember them. As the day drew closer I became more and more excited. A great deal of the excitement was just looking forward to getting out of bed but getting this first step of my rehab underway was also huge.

On Monday July 18th (exactly 9 months after being diagnosed with cancer; 12 days post-opt) at about 10am I was ready to take my first step. The day came a couple weeks earlier than all my doctors and physiotherapists had anticipated so they were already impressed. Their expectations for me that day were to sit up with my legs over the edge of the bed and stand up with a walker if I was feeling up to it. Not only did I complete these with little difficulty but I was ready to progress from there. With the help of a walker I took my first step... and then about 50 more steps after that.

My parents were there to witness the event and of course my dad wanted to get it on video. He said it was just like watching me take my first steps some 25 years ago. He's been showing it to anyone and everyone who is willing to watch the video. I think even if you didn't want to see the video he'd show you anyway. I don't blame him, it's a pretty big deal.

My first steps were obviously the highlight of the day. I don't think anything could possible top that moment. Although there is one other action that came very close yesterday, for me anyway. I was anticipating some discomfort or pain in my knee when I finally sat on the edge of the bed. Having my leg supported and straight for nearly 2 weeks, my knee was very stiff. To my surprise it caused absolutely no pain what so ever when I bent it over the edge of the bed. It was actually quite the opposite. Finally being able to bend my knee was the best feeling EVER! All I had want to do for so many days was bend my knee. It was like a bad itch you can't scratch... for over a week... and then you finally hit just the right spot. All I could think about some days was how badly I wanted to bend my knee. It's funny how such a simple action made me the happiest girl in the world.

It's going to take quite a bit of time and practice before I'm getting around independently but I'm ready for the challenge. Bring it on!

276 hours

I spent the first 276 hours after waking up from surgery flat on my back or 'sitting up' at a 45 degree angle (with the help of the hospital bed... so for the most part, still lying down). If you've ever spent a day laying on the couch and wished "if only every day was like this" ... take it back! Being on your back and primarily your butt, day in and day out (for 11 days), barely able to move around or readjust = TORTURE!!! My butt has never seen sooooo sore in my life!

I do everything in my bed. Sleep, eat, watch tv, read, stare at the ceiling, wash, even go to the bathroom. It's like a little prison cell. There isn't a whole lot I can do by myself either. I need someone to bring me water, food, things to do and keep me from going crazy. I need someone (actually two people) to help me if I want to roll onto my side for a little bit to give my butt a couple minutes of relief. I need help bathing and changing and going to the bathroom. Even going to sleep requires some assistance. Arranging of pillows, straightening of the sheet. This means everything requires some advanced planning or preparation. Who knew laying in bed was SO difficult.

So the next time you're thinking it would be great if you could just sit or lay around all day, remember... some things are only good in moderation. So enjoy it while it last but then appreciate it when you can get up and get on with everything else.

"I Have Never Seen That Before"

Apparently I like to be a little bit different (honestly, how many people get Crohn's Disease AND Cancer) but sometimes the things that make me "unique" surprise even me.

Both of these happened post-opt while I was still in recovery.

1. Anyone who has gone through some kind of procedure knows about the sticky pads they place on your chest which they attach wires to to monitor your stats. And thanks to all of the doctor shows out there I'm sure many, if not all, of you who have never even set foot in a hospital still know what stick pads I'm talking about. At some point after surgery while I'm in recovery, I'm at the point of still being a little bit groggy but fully conscious, they being to take off / unhook all the monitors and tape attached to me that is no longer necessary. Time to remove those sticky pads that are on my chest and sides. About half a dozen. She rips them off fairly fast as you would a band-aid or piece of tape. Just like both of those, I have that stinging/burning sensation. It doesn't take long for me to realise that it hurts more than what I think would be normal and it doesn't seem to be fading. Just the light touch of the hospital gown resting on my skin feels like pins and needles. This is when I pull down the collar of the gown to expose the spots and ask the nurse if I have a rash or something from the pads because it's stinging (I can't see them myself). The expression on her face said it all. Apparently the pads had actually burned my skin a little bit and when they were removed they took a layer of skin off with them. In her words "I have never seen that before". It's fairly normal to have some redness from the pads but definitely not burning. I showed the marks to many of my doctors and nurses in the following days and it was more of the same, "I have never seen that before".

2. I've been in recovery for a little while now. Everyone who was waiting to hear about the surgery got to come down and see me. It's now just me and my parents and the nurse gives me some ginger ale to sip on. I'm doing just fine and my nurse goes to help another nurse with a new patient that just came out of surgery, she's just on the other side of the curtain. A little while later she runs back over to my bed because she sees that my heart rate has spiked. My parents could tell what she was concerned about by the monitor she is looking at. This is when my dad says, "it's from the ginger ale". My nurse, understandably, looks at my dad a little perplexed. He continues, "each time she takes a sip of ginger ale her heart rate seems to increase". I have to assume that she must have thought my dad was a little bit crazy or maybe just over tired waiting for me to get out of surgery. She definitely needed to see it to believe it. She watched as I took my next sips of ginger ale and sure enough my heart rate went from about 102 to 152 in seconds. Moments later it would slow back down and remain constant... until the next sip. I don't think it was until she witnessed it about 3 times before she truly believed the two were connected. And you guessed it.  She said "I have NEVER seen that before".

What can I say, I like to be different.

The Big Day

I am now 10 days post-opt and have several things to write about. As I see it I have two options... 1. Write one long post summarizing the past 11 days or 2. Write several posts dedicating each to a different day or topic. Seeing as I have quite a bit of time on my hands, I'll go with option number 2.


SURGERY: Wednesday July 6th
9 months in the making, it was finally time for surgery. I was never overly nervous about the surgery even with how extreme it was going to be. I often told people that I was very confident in my surgeons and I knew without a doubt that they would be paying close attention during my surgery. My theory being that with such a rare surgery they would all be very interested/excited about the procedure, unlike some routine surgery that they have probably come to find boring.

The morning is a bit of a blur but there was something pre-surgery that I found amusing. When I was asked to change into a gown I was also given what I'll call a "surgical hair-net". I haven't had hair for months, it fell out completely with chemo. I know it's standard procedure, it just seems a bit ridiculous / unnecessary for me to wear it. And so I just carried it around with me until I was actually on the operating table.

There isn't a whole lot I can tell you about the surgery .... I was asleep. I do know it was 12 HOURS long. The first thing I recall when I woke up was asking the doctor what time it was because I wanted to figure out how long it had taken. I really felt for my family and friends who had to wait literally the whole day, anxious to find out how I was doing. Fortunately the surgery was a complete success!!! I am now without the right side of my pelvic bone and part of the sacrum (and with good margins).

There were two great moments for me after waking up in recovery. One, I was able to move the toes/foot on my right side which doctors weren't sure I would be able to do for at least a couple days or possible ever. Second, I was told  that there were 18 people upstairs all waiting to find out how I was doing. I can't put into words how great it felt to have that many people there not only to support me but to be there for my parents and each other on such a long day. As a bonus, because it was so late at night I was the only one in surgical recovery, they let everyone come down and see me for a quick moment. Such a great feeling!!!

What's with the title?!?

Where to begin?
I have next to no experience with blogs. There is only one blog that I follow/read and I've certainly never written my own. So why write one now. Here is a quick summary and background.

At 26 I face the most difficult challenge in my life yet. I am aware that I am by no means old but already I have been diagnosed with Crohn's Disease (just before I turned 18) and nine months ago I was diagnosed with bone cancer. Ewing's Sarcoma to be specific. For 30 weeks I went through chemotherapy treatments to shrink the tumor. Boy am I happy that's over with! Now I need to have surgery to take out the cancerous bone. I should probably mention, the cancer is in my right pelvic bone. The plan is to remove the entire right side of my pelvic bone and a little bit of the sacrum. You are probably thinking ... "ok, so they will put in some kind of replacement. Right?!" You would be wrong. Absolutely nothing will be replaced. The void is suppose to fill in with scar tissue. And if all goes as planned, I will have complete function of my leg. And after an extensive rehab period, hopefully be able to walk again unassisted. Crazy right?!

I bet you understand the title now!