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. 

Oh the people you meet: part 3

Staying at RMH (Ronald McDonald House), and getting treatment at Childrens Hospital means I come across a lot of families with amazing, strong, and incredibly inspiring kids. I want to share some of the families we got to know really well, and hope they inspire you as much as they inspire me.

This is Super Caleb Gozjolko and his parents Jason and Kristi.

Caleb here is my one lung buddy. That's right, 3 years old and down one lung thanks to Pleuropulmonary Blastoma, an extremely rare and aggressive lung cancer. After months of intense chemotherapy and the surgery to have the cancer (which he called "Timmy the Tumor"), and lung, removed, things are really looking up for Caleb. 

To watch this amazing kid run around RMH just a few days after his surgery made my jaw drop. I remember a few days after my surgery I had the hardest time walking the few steps to the bathroom. Super Caleb runs and plays and just blends in with all the other kids in the house, but he did get tired a little bit faster than everyone else. That is more than ok though, I mean, he's running around the house with one lung!

Facing some of the same problems as Caleb, I understand the exhaustion that comes along with chemotherapy treatments, as well as the feeling sick. Some days you could just see the exhaustion and sadness in his face, so tv/movie days were in order, but you can see that radiant smile of his even when he's tired from playing. He's made a complete turn around and is so happy. Super Caleb inspires me to smile, fight, and play, but also remember that its ok to take a break. As he said himself: "Can we just pause, I need to take a break." 

I can't stop myself from smiling every time our families cross paths at RMH. We became a comfort to each other and I am so proud to call them our friends. We share this closeness that's hard to come across in every day life. To think that this incredible young kid and I face similar situations in our lives is mind blowing. 

But to look at him now, doing so much better, makes it easier for me to smile. I am in awe of what this kid is capable of, and completely blown away by his attitude. He inspires me to keep my head up, and looking at him now, I know there will be better days ahead for me. I look to him when I have a bad day.

If Super Caleb can do it, why can't I?

To read about Kristi's experience at the Ronald McDonald house check out this link!
http://www.industrymailout.com/Industry/LandingPage.aspx?id=1304388&lm=55277365&q=618545109&qz=95e1d9aec1629d21875eb9cb1e8f008b

Oh the people you meet: part 2

It's quite obvious that the first person you will meet throughout everything is your doctor. I am thankful to actually have a few doctors following my case, and all have helped in keeping me alive, and allowing me to become the person I am today.

Dr. Wik who works at the Cranbrook Regional Hospital was absolutely wonderful. She is the doctor to go to when you need things done. This woman has balls! When she knew I needed better care than she could give me, she did everything in her power to have me shipped off to Vancouver. She didn't hold anything back, she was upfront, and even pretty feisty, and we appreciate everything she did for us.

Dr. Yee, a thoracic surgeon at Vancouver General Hospital is probably going to be at my wedding one day. He and his top notch team of surgeons fit me into their holiday schedule, and saved my life. He was honest with us as well, and told my family and I that if we had waited, I wouldn't have made it to see next year. It was December 29th, talk about cutting it close. Not only that but he knew the surgery had to be performed through the front of my chest, and not from behind otherwise I may have bled out on the table. I definitely had someone looking out for me. He also personally talked to my parents about how my procedure went, and usually a nurse comes to get the family once the patient wakes up in recovery, but he went out and got my parents and brought them to me in recovery. We also saw him every day after my surgery, even though it was the middle of Christmas holidays.

Dr. Strahlendorf is my wonderful oncologist at BC Childrens Hospital. She oversees all of the treatments I receive, and even though we've had to change our treatment plan more than once she has never given up hope. Not only is she a doctor, but an amazing supporter of not only me, but all of the kids. My mom and I always say she's our angel, and she's always wearing long, flowing clothes, and she seems to float when she walks. If angels really do exist on earth, I'm pretty sure I've found one. My visits to see her don't feel like your stereotypical doctor visits that you normally dread. We actually just talk about life, like what I do with my life outside of the hospital visits and procedures. We talk about my life at home, and how I can live a normal (and I use normal loosely) life and do most of the things teenagers do. She also does everything in her power to make sure I am home as much as possible. Thanks to her I don't always need to be in Vancouver to receive treatment.

Suzanne is our nurse clinician, and an amazing side kick to my oncologist! She is on it 100% whenever we need messages relayed, prescriptions, questions answered, and appointments scheduled. She knows absolutely everything that's going on and is most likely the most frequently e-mailed person in my mothers contacts. No matter what she is always answering our calls and e-mails and answering any questions we have to the best of her ability. She is always so happy to see all the patients in the oncology clinic and does her best to make time to say hi to every family passing through the clinic each day. Thanks to her and Dr. Strahlendorf's close working relationship, it helps in allowing us to receive treatment at home because she's always got a close eye on us.

Dr. Heran (aka Dr. Good Looking according to all the nurses in clinic) is an interventional radiologist and has helped me make progress in my battle with cancer. He is directly injecting chemotherapy into my tumors, which has helped significantly due to the fact that there is limited blood flow to the tumors in my chest, which in turn makes systematic chemotherapy not as effective as we would like it to be. The needles are guided by a CT scanner and the chemotherapy is then injected right into the tumors. In other words it's kind of like extreme acupuncture. I've had this procedure done 3 times, and I'm coming up on number 4. It only needs to be done once every 3 months. Again, it helps to allow me to be at home and in the company of family and friends.

Dr. Gray is one of the most wonderful family doctors here in Fernie. He has kept up with most all of my progress and is doing his best to adapt to my special circumstances. It's every day he sees a cold, but it's not every day he sees a patient undergoing chemotherapy with a cold.  He is very understanding, and very urgent with his care towards me. He cares not only about my physical health, but my mental health as well. Every visit to him starts with a "how are you doing" then proceeds with "how are you feeling". Yes, those have two very different meanings. I am incredibly grateful to have him looking out for me while I'm at home.

I am so thankful, and appreciate these people more than words can say. They're responsible for keeping me here today.

There are many more doctors, nurses, technicians, and radiologists that have helped me along the way, listed above are the main doctors that I've dealt with. Each and every person has played a part in my care, whether it be for radiation treatments, ct/pet scans, echo-cardiograms, ultrasounds, x-rays, blood tests, and everything else. Everyone has been so kind, patient, and offered lots of guidance and support. I can't say enough about the care I have received ever since the start.

These people aren't just helping me battle cancer, but they are helping me live my life as best as I possibly can right now.

To everyone I've met along the way, and will meet in the future, thank you.