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. 

The food battle.

"But I just don't feel hungry" 

It's a constant battle between what everyone says I should eat versus what I feel like eating. It's hard to find food that I like anymore because my taste buds are different. The taste of the foods I loved have been altered to the point where I'm scared to try new foods. I'm so sensitive to spicy foods and foods with strong tastes. If I do feel like eating it has to be what I'm craving in the moment or it just doesn't sit well in my stomach. 

Fighting nausea is an entirely different battle on its own.

Not only are there days when I can't find food I like, but fighting the feeling of wanting to constantly throw up makes it hard to eat as well.  There are days where I can't even keep down a sip of water without throwing it right back up. 

Gross huh?

The worst days are the days when I can be starving but as soon as food hits my stomach I'm running to the bathroom or sticking my face in a bucket. On these days I can't control the nausea because I can't keep the medication down long enough for it to kick in. 

Now everyone has an opinion.

I understand when people say "you have to eat _____ because it kills cancer" are only saying it because they care, and they want to help me, but I know all of this. I know to eat blueberries and pomegranates and kale for antioxidants and vitamins, but it's so hard to always eat healthy. Especially since I need to gain weight, not lose it due to eating healthy. My biggest pet peeve is when people tell me that "if you eat this it will kill cancer cells". And yes, that is true to a point. Most of these "cancer killing" foods are actually cancer preventing foods. 

I'm so thankful "mom-cologists" (mothers of cancer patients) understand their children.

All the moms at the Ronald McDonald house are so amazing, cooking up whatever their kids want and whenever they want it knowing well in advance that only 2 bites will be taken and they will be done.

It's a battle within a battle. Fighting cancer means fighting to find a way to eat, sleep, drink, and just live normally. 

I guess all I'm asking is that you don't judge me by how I eat. It may be weird combinations of food some days, and no food at all other days. And please don't try to force me to eat, when I say I'm not feeling well, I mean it. 

Energy

I love to write. 

Not only that but I love card games, puzzles, video games, and even texting. Lately though I've felt very frustrated due to the fact that I have hardly any energy to do any of my favourite things. Sometimes I don't even have enough energy to watch a movie. Something as simple as laying down and doing nothing basically exhausts me. It may also just be the fact that it's the only thing I can do for entertainment and I'm no longer entertained. Just bored. I don't feel like doing the things I love to do. They seem to have become a chore for me, and I find myself having to put more effort into daily life than I used to. I even have a hard time texting my friends back because I'm just too tired to respond. 

Imagine, a teenager who DOESN'T want to text message 24 hours a day.

I felt bad that I've been neglecting not only messages of love and support, but also my blog, but I've been having a hard time mustering up the energy to write about my life. Everything just seems so draining, and I don't want to continuously explain to everyone how tired I am.

Also, I can't seem catch a break.

Right now the chemotherapy treatment I'm on requires me to take it every day. No stopping. My last treatment was 21 days on and 7 off. This time there's no break. At least we found that it may have been a virus that was constantly making me extremely sick, and not the drug. Being so sick just drains you twice as fast as normal!

I'm just sick and tired of being so sick and tired.

So I will end this blog post on a short note due to the fact that I am exhausted, but I would still like to play a quick game of cribbage with my mom before bed time.

You think I'm lucky

I hear a lot of people say "wow, you're so lucky you got to...." When I tell people about teen group activities, Canucks games, and BC Lions games. I have gotten to experience some amazing events, including 2 concerts now (Justin Bieber and Carrie Underwood), and I even went on a free trip to  Greece! 

At a Vancouver Canucks game Ofelia, Wesley, George, my mom, my great aunt, and I actually got to go down outside the locker room to meet Jason Garrison (#5 on the ice, #1 in, my heart) and he gave me a signed tshirt and his hockey stick! And recently at a BC lions game Felicia, Ofelia, my mom, myself, and many other kids from BC Children's hospital got to be on the field during the half time show, which just so happened to be Bif Naked! It was incredible! We were even able to get a picture with her and her guitar player Jacen before they left! 

While I am incredibly thankful to have been able to do all of this and more, I don't think it should be called "lucky". I am so grateful that I am able to experience these events, but it comes with a price. That price is cancer.

To be completely honest I would give back each and every opportunity I have been through just to be healthy. I would have rather missed out on all of these experiences just to live a life without cancer. 

So before you comment saying "wow Brooke, you're so lucky you got to meet Jason Garrison" "you're lucky you met Bif Naked" or "you're so lucky you got to go to a concert", remember it's not luck. It's more of a way to make the battle just a little bit easier, and not just for me, but other kids and teens fighting similar battles.