Sometimes it's ok to cry

In a perfect world there would be no illness, no death, no sadness, and no sorrow. In a perfect world there would be a cure. But we don't live in a perfect world, so the sickness and the sadness happens, and a lot of the time in conjunction of each other. There have been a lot of tears in the doctors office, and at the Ronald McDonald House. Most of the time I can handle the news I'm given, because no matter the news I get, someone else has gotten worse news. I'm not saying that my situation was never bad, I just knew I could deal with how I felt about it later, but at the time all I wanted was to know "whats next". I just wanted to try everything and anything I could to get rid of this pain in the ass growing inside of me. There was no time to be sad, only time to move forward.

But some days you are just sitting and waiting. Whether you are waiting to see scan results, waiting to recover from an infection or surgery, or even recover from chemo, you have this time to sit and think, and let all of the emotion catch up and sink in.

And boy does it ever sink in.

It's not often that anyone will see me cry, but there are days when I just need someone to be there for me and tell me that its going to be ok. All of these scary things I've experienced hadn't really taken an immediate toll on me. Sometimes I'm even unconscious because it's a surgery like procedure that I've just gone through. But to sit back and think, wow, did I actually do that, did that actually happen to me? It's terrifying. I'm still so young, there is still so much in life that I haven't experienced, and here I am going through one of the worse imaginable things that could ever happen in anyone's life. I mean, when someone hears the word "cancer" they subconsciously link it with death. Most people associate cancer with being terminal.

That's not always the case though.

After I have a bout of crying, I look back and think to myself that yes, I have experienced one of the worst things in the world, but I'm still here. I'm still alive, and I should be thankful, and every day I am. Now that it's been a while, its easier to face things with a brave front. It's easier to do what I've been doing for so long now. It's so easy to just keep fighting. I can take on each new challenge and say I've been through worse; if I can make it through yesterday, why can't I make it through today.

There are days when I can't help myself, and I just get tired, sad, and inexplicably lonely, but its only human to have those days. It's easy to wallow in self pity and be sad, but it's hard to put a smile on your face. If it were up to me, I wouldn't want to feel sad at all, because having a sense of humor about everything makes it so easy to be happy. And my family and I like to think we are pretty darn hilarious.

Go show the world who's boss. There are so many things that can tear you down, just show everyone you can stand back up no matter what. I'm proof that it's not impossible. I mean look at me.


I'm already kicking cancers ass, want to be next?

The worst part is losing your hair

It feels like forever since I've had hair of my own. It hasn't been that long, only since June 29th 2012. Now, usually I am really bad with remembering dates of things that happened, but I will never forget the day I lost my hair. It was also graduation day. Since no teenage girl, who is graduating, wants to walk across the stage completely bald, we had prepared for this moment by having a wig on standby. I just wasn't emotionally prepared to handle it yet.

It all started coming out slowly on Monday, and by Friday it was pretty much all gone. I remember having so many family members over for grad, and I was taking way too long in the bathroom after my shower. My mother so graciously knocked on the door and asked if everything was ok in there. It wasn't ok, I was balding, and I had already spent more than 30 minutes just sitting on the floor wrapped up in a towel crying.

That's right, you read it right. Happy go-lucky, always smiling Brooke was crying, and it took me so long to finally open the door and tell my mom what was happening. I wasn't ready for the world to see me with no hair on my head, I wasn't ready to be stared at, or given sympathetic hugs. I just wasn't ready for any of this to start happening yet. All I wanted was just a little more time. One more day (well, actually 4 more days) with my hair was all I needed. I just wanted to walk across that stage and get my diploma before the reality of having cancer finally caught up to me.

I am so incredibly thankful for 6:8 photography's Kevan Wilkie and Duane Clemens. When Kevan saw me at the hospital, and we told him about losing my hair for grad, he conspired with his partner Duane and these two wedding photographers (who also did our grad photos!) came to my rescue. They had rounded up someone to do make-up, someone to do hair, and someone to let me borrow some outfits for a photo shoot while I still had hair left on my head! They took pictures of me in my prom dress with my walking partner, and some other amazing pictures around town. I had spent almost 4 hours doing photos with these guys and I had never felt so pretty in my entire life.

So I did say to a lot of my friends "if I lose my hair for grad, I may as well show up in a half black and half white wig" and not too many of them believed me. I did wear a blonde wig that was close to my previous hair colour for commencements, but we all went home to change for prom just after. This is how I showed up to my prom. Half black, half platinum wig.

It didn't take me long to learn that I could easily have a lot of fun with this. I could be a different girl every day of the week, heck, with all the wigs available I could be a different girl every day of the year!

Even though I always talk about the positive side of being bald (like using waaay less shampoo lol!) I still have days where I miss just having my own hair. It's starting to come back in, and it is a lot softer than it was before,  but it just seems to take too long to grow.
I've been saying to some of the newly diagnosed girls who stay at the Ronald McDonald House in Vancouver that you can prepare for the day as much as you want. You can tell yourself over and over again that it is going to happen, and there is nothing you can do about it. Once it starts happening though, be prepared for the shock of a lifetime. There are things in life we just need to let go of, and for me it was the last few strands of hair. It took me just over a week of looking like Dobby the house elf from Harry Potter to get rid of the last new strands. But until then, I absolutely love having my head rubbed!!

One more PET scan and I'll glow in the dark!

As most of you are aware, we use a PET (positron emission topography) scan to see the progress I am making in my treatment. The scan shows big black spots where my brain, kidneys, bladder, and cancer are. These scans are long, and the process starts with a radioactive sugar being injected via IV. This what makes everything look black on the scan. Anything in my body that is currently eating up that sugar is picked up during the scan. Then we wait. We wait 45 minutes (and I can watch 45 minutes of one of the kids movies they have available) until the sugar is doing what it needs to do, and the scanner is available. The scan itself is approximately 30 minutes, 5 for the CT portion, and 25 for the PET. That usually means nap time for me, so it seems to go by quickly.

What doesn't go by quickly is the time between the scan and the result of the scan.

I have had at least 8 PET scans, including one last week. Each time we have gotten results, it hasn't quite been what we wanted to hear. It has always been "good, but..." until this last scan. This time its just getting better! But when we were in a rut of bad news, we just dreaded the time we had to spend waiting to hear the doctors say "this isn't the result we want".

It's great to know that what we're doing now isn't making me incredibly sick, and I'm kind of on the mend! Finally we have been told that it's getting better, and there's no need to rush into the next treatment. We don't even have our next PET scan scheduled when in most cases we do. I'm sure it will be in approximately 3 months. I'll keep you posted.

P.S. after my PET scan I am considered radioactive. Its actually recommended I don't go near young children or pregnant women, and I need a letter to travel into the US 24 hours after the scan. Apparently I would light up their bomb detectors.
Also, even though I am radioactive, I don't get super powers. I've tried. The only thing super was the disappointment that I couldn't fly or shoot lasers out of my eyes. Maybe next time. Or, maybe eventually I'll just glow in the dark.

We laugh about it now.

So once upon a time when this was all still very new to us, we needed to be emergency air lifted down to Vancouver for my first surgery. Not only at this point did we find out my tumor had burst, but it was also a snowstorm. Hooray. This meant driving code 3 (lights and sirens and FAST) to the airport on apparently, according to the paramedic, very icy roads. Even better. No sooner do we get on the plane and my mom realized her seatbelt wasn't quite up to par, no big deal, she tied the strap down and we were on our way. 

At this point in time I was drifting in and out of consciousness, every time I opened my eyes they would push some morphine and I would go back to sleep. But I woke up during the plane ride and kept my eyes closed so I could be aware of what's going on. Then we hit "turbulence" and what felt like an air pocket turned into our dual engine plane becoming a single engine plane. No big deal right? Well from my point of view I remember hearing "fuel pump leaking... Emergency landing in Kelowna... Make it to Vancouver.... Mid-air engine restart..." (The "..."Representing what I don't remember) and also my mom saying "seriously, you're freaking kidding me". 

Seriously, we weren't freaking kidding.

We made it safe to Vancouver (although a few fire trucks and ambulances followed the plane down the runway) and we made it to Vancouver General Hospital. Once I was (sort of) settled and all teams of doctors had taken blood and done their testing, the social worker convinced my mom to leave me so she can tour the hospital. She found the rat that they must have been feeding with all the blood they took from me. Yes. That's right. A rat.

Two? Days later I was in for surgery, and as was being prepped my parents asked if I wanted anything, and all I could think of was a DS with Mario and Zelda games. Oh, and paying off my car but I wanted to do that by myself. My anesthesiologist wanted me to ask for a Ferrari. 

Coming out of surgery everyone says funny things they don't remember. The very first thing I (apparently) said was "well that was fun... I think?" And my mother told me I called a woman a b**** because I was on a fluid restriction and couldn't have juice and she could. She was also being mean to the nurse about what flavour of juice. I stand by what I guess I said. The man in the bed next to me was annoying as well (we later clued in it was because he had anxiety and paranoia) and I guess I was so mad I said "I hope he had his lung removed too so it's easier to suffocate him while he sleeps". And grandma got a time out for having Tim Hortens. 

At the time we were all in a panic, and we were all scared. The realization of all this is that I was just a few days away from not being here today. It's still scary to think that. But now that the scariest part is over (I hope) we can look back at the good times we had, and even laugh about the bad times. It's just nice to know I have someone looking out for me. Because here I am.

And I'm not going anywhere but forward from here.

This wasn't the plane that broke, but I thought I could add this picture I took while standing underneath a plane at the end of the runway at YVR.

Oh the people you meet: part 1

I will start this post by saying that the people I meet will be in "parts" so I can highlight each individual or group of people and how they have impacted me. Also, I'm not done meeting people yet!

Today I met a young group of volunteers who attend Capilano University and they call themselves "Ronald's Helping Heroes". After talking to them this evening I can definitely say they are heroes!
Not only did they cook a wonderful meal for the families at the Ronald McDonald House, but when they sat and talked to the families tonight, they were engaged 100% and genuinely wanted to hear what we had to say. This is a group of young adults making a huge impact in other people's lives. People who need help and care are able to receive it thanks to people like the Ronald's Helping Heroes!

I want to help them out as much as I can, if I am ever in Vancouver during one of their events I will do everything I can to get there just to help! Maybe I could act as a spokesperson!

To check out these guys and even help along with their campaign go to their website and follow their Facebook and twitter!

http://capuwedo.kintera.org
Twitter: @RHHBC2013

When it all began...

What were you doing on December 19th, 2011? I was on the start of Christmas break in my final year of high school. It was like any other weekend (mostly). I had been battling what I thought had been a cold for a few weeks now, but I still decided to head off to work. A few co-workers of mine saw I wasn't feeling well at all and told me to go to the hospital. So I left work early, and called my mom to take me to the hospital. We went into emergency thinking I might have pneumonia, so a chest x-ray was in order. I was expecting antibiotics and to go home and rest. What I wasn't expecting was the word "cancer", but that's what I got. A mass on my lung, that was about 3/4 the size of my lung.

That's when it all began.

My name is Brooke Ashley Malakoff, I am currently 18 (I had just turned 17 at the time of my diagnosis) and I have a cancer called 'infantile fibrosarcoma'. If you're ambitious enough to research my disease you will find that its normally diagnosed in infants and up to the age of 7 years old. You would also find that it does not originate on the lung, it starts in the soft tissue of the limbs and can occasionally spread to the lungs.

I always thought I was unique. I think this helps prove that.

Back in December on the 29th I had my left lung, and the tumor, removed. But not before the tumor had a chance to burst. After the surgery I was in the clear, at least for a little while. In May 2012, one month before my graduation I was back in Vancouver for a check up. Even though there is no left lung, the disease is now in the cavity where my lung should be. Great. So 3 weeks before my high school graduation I was getting prepared to start the journey that would change me forever. Chemotherapy began, along with all the side effects that chemotherapy brings. I actually lost my hair the morning of my commencement ceremonies (thank goodness for wigs)!

So here I am, almost 2 years later, finally ready to start sharing my story from my own point of view.
Most of my family and friends have heard of my 'journey' from a facebook group that my mom keeps updated. This is the beginning of my story, told from my perspective. This blog is going to be like my journal of my past and future treatments, and how I've felt through all of my experiences. I'm hoping to inspire, entertain, and help you all understand how I've handled this whole process.

I hope that whoever reads this will share it with their friends who need a little bit of inspiration, or something to read from time to time.

Until next time fellow bloggers/blog readers.