Already kicking cancers ass, wanna be next?

Hello there folks! 

As a lot of you who read this know I recently had a PET scan. This scan helps determine how much cancer I have in my body. Below is a picture of my scan, one is from January (3 months ago), and one from April (last week). The picture on the right is the January scan. It was after I was really sick for a month and basically didn't have chemo. The picture on the left is the April scan, and wow! What improvement! All the black spots in the chest area is cancer, don't worry about the two big black spots at the top and bottom of the scan. It's just my brain and my bladder!! The focus of the pictures is to see what's hanging out on the left side of my chest, which appears on the right side of the picture.

I mean wow! What improvement!! It is definitely a reason to celebrate, so celebrate I did!!! 

I'm so greatful that some of my friends go to school in Vancouver! Ofelia, Julia, and I met downtown and went for dinner! After that Ofelia and I flew over Canada while Julia went home to grab her ID! Travis was also in town so we all met at the bar and just hung out!! It was great to be out and just be like your average 19 year old!  

Julia is missing from the photo because she was taking it! But we still love her!!!

I get to be home and not really have to worry, and not feel so sick all the time. It's nice to feel a little more free! 

I guess I should also mention that I get to co-host the BC children's hospital miracle weekend telethon!!! I'm on Saturday night, May 31st!! Make sure you all tune in, oh, and donate!! ;) 

See you all then! (Well, you'll see me then.)

Don't want to jinx it!

Well folks, it's been a while since I've blogged last but that's because things have been going quite well. I hate to say out loud how well I've been feeling lately because I don't want to end my streak of feeling this good! 

It's weird that I have nothing to report on! 

I'm so used to telling people that I've had a rough week or I've been feeling tired or that I was in the hospital for antibiotics. We've been out of the hospital long enough that we will have to hep flush my VAD again! I'm thankful we are able to do it at home too so I don't need to go to the hospital and be exposed to all the fun germies there. Also, when we are at home I can push the saline myself and it's more fun that way! 

Since things are going so well, and I'm feeling good, I'll leave you dear readers with an updated picture of my HAIR!! Yea, that's right. Hair. Can't wait for it to warm up so I can rock the pixie cut!! 

But that's it for tonight folks! Keepin it short and sweet again!!

Home is where the heart is.

While living in Vancouver for the 6 or so months we were there, I got sick. And by sick I don't mean cancer. We've already established that. By sick, I mean that when my immune system was lowered (side effect of the chemotherapy) I caught some sort of stomach flu virus.  While you at home would have the flu for no more than 24 hours, I ended up being hospitalized for 13 days. 

Yes, that's right, I said days.

I am used to staying in hospital for a short amount of time. I used to spend 4 to 6 days admitted for chemotherapy. I was not used to 13 days. On that last day, as we were preparing discharge papers, my mom and I told our nurse that we got to go home that day. 

Our nurse knew we lived 12 hours away, so her shocked response was no surprise. 

"Like, home home? Like Fernie home?" 

As much as we would have loved to say yes, we knew that wasn't a possibility, especially after being so sick. Our doctor wouldn't want us far from the hospital. 

"Not home home, but to our Ronald McDonald home!"

Well, this makes more sense now. 

After having to stay in Vancouver this long, the RMH became our second home. We had a place that became such a comfort that we could honestly call it a home. Not only that, but it was filled with people who become your second family. 

Now I'm always torn. I love being at home in Fernie more than anything, and when I'm in Vancouver I long for my own bed. But lately when I am at home in Fernie, I wish to be in Vancouver and enjoying the comforts of our second home. Some days I think I like it in Vancouver a little better because the friends I have at RMH are unfortunately stuck there for a while, where all my friends at home have moved away for school. 

No matter where I am now, I know that I'll always be wanting a little taste of home. When I'm in Vancouver I will wish to be home in Fernie in my warm bed watching Netflix. When I'm home I'll want to be in Vancouver doing puzzles and crafts with the other kids.

It's really hard to leave home, and when you are constantly back and forth between two homes you find that your heart lies within both places. It's so hard to leave my brother and step dad behind most of the time, and it's so sad to have to say goodbye to the young kids staying at RMH. I'm just glad I can say that I'll be back. I'm never gone too long. 

Finally! Some good news!

I have been waiting almost 2 years to hear that we finally have control. Waiting, and trying different chemotherapy drugs, as well as different methods of receiving chemo to find one that actually works. For nearly 2 years we have been holding the cancer at bay, neither growth or shrinking happening. Just chilling out in there. 

But the tables have finally turned.

After a solid 3 weeks on a new chemotherapy drug we have seen improvement. Not a lot, but enough to know that it's working. We weren't asking for much anyways, Rome wasn't built in a day, and tumours won't disappear in a day, we just wanted to know that all of this suffering wasn't just for nothing. 

Not only is it working on the tumours, but I'm also tolerating the drug really well.

Before this new wonderful oral chemotherapy (called Crizinotib) I was on IV chemo, and other pills that made my blood count drop significantly. I was feeling sick and tired all the time, and my immune system was null so I never was able to go out. Now I don't feel nauseated 24/7 and my blood counts stay fairly normal. I used to get blood and platelet transfusions biweekly, and I haven't been in need of blood in 2 or 3 months, and even longer for platelets! I've felt more free, and just generally good. I've felt good. Better than that actually, I've been feeling great! 

Now that we know this chemo works, and I am experiencing minimal side effects, I feel like I can adjust my life to a regular and more normal routine. 

That, and my hair has been coming in since November-ish. I can almost go without a wig, but it is a little bit chilly for that, and it's still a little bit thin. But I will finally see what I look like with a pixie hair style! I was always to chicken to cut it short, and kept it pretty long. Well, until I went bald anyways! 

And here it is: my miracle drug! 

Scan to scan

It's hard to make commitments to the future. We can never just say yes to making plans because it will all come down to the way I'm feeling that day. And we don't know how I'm going to feel on any given day. Some things we do plan well in advance though, like scheduled appointments in Vancouver around different events. For example, we schedule appointments the week leading up to, or the week after the BC Children's Hospital telethon so we can volunteer at said event. With that being said, we never actually know how long each visit to Vancouver is going to be. In 2011 we thought it was going to be a weekend and back in 3 months time.

Three weeks later began our 6 month "visit". 

A family, when faced with a cancer diagnosis, learns quickly that this is not something we can control. We cannot decide our futures for ourselves anymore. Our future depends on the cancer, whether it's responding to treatment or not, and that can only be decided by scans. Yes, it completely consumes our time, energy, and emotion, but that doesn't mean we can't live in between scans.

I find that we live a fuller but simpler life. The things that used to consume us seem petty. We have a different view on life, and even though it's filled with pain, suffering, and fear, we see the light side of everything. Our perspective of life has turned from "how many years in my life can I have" to "how much life can I have in my years".

We open the door to today and embrace whatever comes.

We don't worry about yesterday, we don't fret for tomorrow. We live on what we're given today.

I wake up each day grateful I have another day to continue to fight. I am thankful I get to see the faces of my family and know they're behind me, there to pick me up when I feel down. I am blessed by the simple moments I get to spend with them. I love weekend mornings, being up with George and enjoying each others company (and lately discussing the Olympics). I love when my mom does puzzles and I pretend to help her, only to end up having her rub my head and cuddle me. I love when my brother/best friend and I drive around town and just talk, and sing along to music, plus he gives the best hugs, but not many people know that. I love hearing my family tell me they love me and hugging me, and I love to tell them. I love being with my friends and making the best of each day, and just smiling and being happy.

This just barely scratches the surface of what I appreciate. It's all the little things that I've learned to notice and enjoy. Instead of rushing around, I've stopped to smell the roses.

This is a relevant quote to give everyone a little perspective on appreciating the time you're given on this earth. I hope you all invest wisely!

Imagine there is a bank which credits your account each morning with $84,600, it doesn't carry over the balance from day to day, it just cancels whatever part of the amount you failed to use at the end of each day. 

What would you do? Draw out every cent and invest it wisely, of course!

Well, everyone has such a bank, but it's known as time. Every morning you are credited with exactly 86,400 seconds. Every night, whatever you fail to invest in a good purpose is written off. Your balance is not carried over. It allows no overdraft.

Yet each day the account is opened and credited with a new balance of 86,400 seconds, and with each night the records of the day are burned. If you fail to use the days deposits, the loss is yours.

There is no going back. There is no drawing against tomorrow. You just live in the present, on today's deposits. Invest it wisely as to get the utmost in health, happiness, and success. 

Expect the worst, hope for the best.

Waiting... Waiting.... Waiting.... 

The time between the scans and the appointments is brutal. We are so on edge waiting for results because we never know what the results are going to be. It's hard to continually keep ourselves busy, and no matter how hard we try we are always thinking about what the next appointment could bring. 

We want to go in thinking positively, but when you go in with high hopes it's so easy to be let down. So we have learned to do exactly what this post is titled: expect the worst, but hope for the best.

We have learned to accept the good with the bad, and every time we are prepared to hear the words "it's good, but..." 

And yes, there usually is a "but", and a pain in mine. 

Now I never really had the chance to finish this post before my appointment, the one where we got good news, so I can't recall exactly how I felt. Especially now I'm overwhelmed with positivity and I don't ever want to let this feeling go. I think for a while I almost did. I was so sick all the time and I wasn't getting any results. In almost 2 years of chemo treatments nothing happened, and I was getting my hopes up. I knew we were only holding this illness at bay, and I started to feel like I would be doing this my entire life. I would like to live a normal life at some point. I don't want to take what feels like 5 million pills a day, and constantly worry about not being able to hug someone because their nose is a little runny, or they sneezed 5 minutes ago. 

A channel on YouTube called "TheFineBros" do a series of react videos, so kids, teens, and elders react to viral videos, and are then asked questions. Recently they had teens react to "The Fault In Our Stars" trailer, and one of the questions, and some of they're responses to it made me feel like they actually understood that we are still humans, and we still want to be treated normally. Seriously check it out! And even some of the other react videos! I'm so thankful they do this! 

Here's a link to the video!

http://youtu.be/rjMqMLZIt30  

Deflated

Here we are, 11 PET scans later and still no light at the end of the tunnel.

Whenever we go for PET scans we are never expecting the cancer to magically be gone, and we don't expect a huge amount of progress, but we do want to see a little progress. We aren't asking to be at the end of the tunnel, we just want to be able to see the light. 

I'm starting to feel deflated. Not defeated, but deflated. I am still positive and I still know I'm going to get rid of this someday, but it seems to be taking forever to get there. Healing takes time, but were into our 3rd year almost, and I'm basically the same as when I started. I am thankful that it's the same and not worse though, don't get me wrong, but at the same time I've gotten nowhere. It's starting to feel like I've done all these treatments, and all of this suffering for nothing. 

I'm ready for this to be over. It's emotionally overbearing.

Even though it's been a long tough journey, I'm so thankful to my family and friends who help keep me strong, and pick me up when I'm down. It's you all who love and support me that keeps my strength and positivity up! I may get angry sometimes, and I feel sorry when I take my anger out on other people, but I feel like I deserve to be angry some days. I'm only human, and I can't help the way I feel. 

But I do love my family and friends, and just spending time with each other. It really helps me put my crazy life into perspective. I can't thank you enough for your loving comments and support. Thank you for picking me up when I'm feeling down.