Time: Update

I will begin this post right off the bat letting everyone know that what you're about to read is going to be difficult for some. 

First off to everyone who has texted, called, faceboked, messaged....whatever in the last weeks or so I hope you've not been worried or thought I was being a wiener face. I've just had some major things happening and have taken the time to process before getting in contact. 

After my hospital stay in October-November I returned home slow moving but otherwise OK. However, as the days passed things began to change and slowly my right leg began to weaken and my back started to give way. After spending some time at home I had to return to the hospital.

I will not be returning home full time anymore. It has been decided that as I lose my ability to walk I will live out my days in the hospital and at home. While I knew that this cancer was terminal we could not predict the turn it would take and how quick. At this time I am not taking many visitors but will slowly as I get settled and familiar with this new change. Every day is different. Scary. 

I don't have much else to say other than that. Again, responding to messages and such is difficult. For now I am taking things hour by hour. I thank everyone in advance for your continued support.  

<3

No Words

3. 

28, 27, 25.

36.

The first number is how many of my friends have died from a different form of young cancer in exactly that many months. 

The second set of numbers are their ages. 

The third number is how many days I have spent in the past months in hospital myself fighting a battle against the cancer that is trying to take over my spine. 

I came to the hospital on October 8 2014 and began writing a much different blog post. Today as I find out through yet another facebook post that an aquaintance of mine was stolen far too young I sit here and write with a much different tune. 

I was just awaken at 6am for one of my new meds. I awoke excited. Halloween. One of my favourite days of the year and I get to spend the weekend at home, surrounded by family, before returning back to the hospital on Sunday evening. 

I awoke with a stiffness in my back. Something that annoys me as it doesn't seem to be going away. It's supposed to go away...I thought. But suddenly that stiffness in my back...and the fact that my leg is slowly beginning to weaken don't seem as life threatening in comparison to the fact that I guess I'm still here unlike these friends I am no longer able to talk to. 

It's 7am. November. I'm home now. Back to reality I guess. Except what is my reality? Can I walk more than a block? Can I drive? Can I go anywhere alone? For how long? I don't know. Every day is a new learning curve. Cancer has taken so much and will continue to take more. And this is scary. But what is more scary are those numbers I mentioned earlier.

Our age group is dying. And we're not getting the treatments we need. 

This post is called no words because I just can't seem to find the ones that truly magnify the seriousness and heartbreak of this all. 

As you go about your days remember this. Chances are what you're facing is minor compared to the three mothers and fathers grieving the loss of their children. 

Unfair.

Unthinkable.

Unavoidable. 

A Post For All Who Want To Help - Super Important!

It's been a while since I've posted yet again. Let's call it lack of inspiration. 

Inspiration hit me recently when speaking to a friend. This friend was genuinely offering me support and wanted to do something for me to make my cancery life easier. This is something a lot of you ask me often. "What can I do for you? Is there anything I can do to help?"

I decided to be honest with this friend, and I have decided to be honest with all of you. While I truly appreciate these offers of food, asking to help me with housework, sharing some fancy new cure you heard about, and everything else you wonderful people offer, I have to admit they actually become a little bit frustrating. Again, I know these gestures are sincere and come from a good place. But my cancer is life long. I may live 10 years, I may live 50, hell I may even live 1. No matter how long I'm around, I would like to spend whatever time I have left living as normally as possible. I mean, do you plan on still asking me how I am feeling in 4 years? Can you imagine if everyone you knew asked you every single day a question that basically reminded you that you were dying? It sucks. If my cancer was temporary and  I had some hope of beating it, than it would be quite different. Unfortunately for me I am aware that my tumours will never go away. This isn't me having a bad attitude, this is just fact. It's hard to accept but we all have to. 

So what can you do for me? It's quite simple really. All I ask is that you treat me as normally as possible. Exactly how you treated me pre cancer. This means never uttering the phrase, "how are you feeling?" to me. For my own mental health I have decided to stop responding to all texts that say this unless I have not told you previously not to ask. If I have not told you then I will politely respond to you by asking you not to ask me this anymore. However, if you know not to ask then in my opinion you are not respecting me or my wishes and you do not deserve a reply. Instead, why not ask me normal people things like, "hey Kayla, how's things? How's your non existent love life? How's your new puppy"? These kinds of questions would be awesome. I don't want to hear questions about my tumours, my treatments, or what's happening in my cancery world. If I want to talk about these things, let ME bring them up. Please. Just allow me that. 

So. There you have it. This is all I ask. I don't think it's asking a lot. I really hope a lot of you read this particular post and I intend to over post it to get the word out to as many of you as possible. It's my hope that this will drastically improve my stress levels and my quality of life within my social relationships. I want to thank all of you in advance for respecting my request and understanding my position.

You're all rock stars...just not as big a rock star as me 😉

The Truth

Incurable. INCURABLE. Iiiiiincuraaabllleeee. The word just keeps rolling off my tongue. Consumes my mouth. Fills it. But what does it mean exactly?

Unable to cure.
Chronic.
Forever.
Not going away.
Always there.
Killing me.
                            Every.
                                               Single.
                                                                 Day.

Welcome to my life. This thought owns me. Especially lately. I thought I had become an expert at living 'day to day'. This is what I tell everyone anyways when constantly bombarded with the question of how I am handling everything. I smile and explain that I am just taking things day to day. Which is really just an optimistic way of saying that I simply neglect to think about my mortality or the fact that tomorrow may hold another poor prognosis. Living day to day is no way to live. It is just a means of surviving what life throws at you without actually feeling or living any of it. One might think it means living in the present. Being of present thinking and living in the now - how very New Age. 

But here is the truth. The truth is that every day in theory I get a little bit closer to dying. Everyday I am left untreated the cancer continues to grow and find new ways to thrive. Worse, every day I feel a little less healthy emotionally and mentally. Every day I simply survive rather than live I feel a little more empty. Numb.

This feeling is only magnified as I am again forced to stay at home. Unable to drive lately or even climb the stairs. My life is taken from me yet again. I am used to being in school, working two jobs, having a busy schedule. Now, with only one semester left after busting my ass in university for four and a half years, I am again forced to leave school. Instead I get to spend my days on the couch watching endless amount of Netflix and box sets my friends lend me. The pain is too bad to go back to work. I am too emotionally fucked up to focus on school. I have no kids. No one to care for. No purpose. At least that's how it feels. 

I feel...lost. I see support groups for people dealing with the loss of a loved one and I think, what happens when you lose yourself? How do you mourn then? The better question is, why are we not allowed to mourn our loss without our family members jumping in and telling us to "stay strong"..."try not to think too much about it"... "this is just one more bump in the road".

Well how many "bumps" can one person handle?

Get Ready To Take Some Notes...

Where to begin. It has been weeks since I have had it in me to write. The state of my affairs is messy and to be quite honest I avoid thinking about my life as much as possible. It is as though thinking about the tumor that forever sits in my abdomen, feeding off of my blood vessel, will actually exist if I so much as think of the word 'cancer'. Sitting here writing about it is not easy, but in doing so I think it is a step towards healing.

I will warn you, however, that this blog is not intended to spark some intrinsic motivation within you nor is it intended to be inspiring. Instead, I would like to provide those who read this with a guide of how to talk to someone with cancer without coming off as a total asshole. Now this blog may piss a few of you off as you read the words and think, "hey! I do that!" If that is the case...too fucking bad for you. Hopefully you will take note and better yourself. I have withheld for nearly two years from saying what I really feel on this topic and to be honest I just don't give a fuck anymore :) so without further adieu, here are my tips for what to do/what not to do when chatting with a cancer warrior.

Number One: This is by far the most important rule. If you should choose to read this and remember nothing else or think that I am a lunatic and you are in fact an expert on the whole cancer situation, please remember this one thing. STOP. FUCKING. ASKING. US. HOW. WE. FEEL. I'm not sure exactly why this is people's favorite god damn sentence on the planet, but on behalf of cancer patients everywhere, STAHP. I have never in my life approached somebody and said, "Hey! Long time no see! How are the kids? Also, how are you feeling?" You know why? Because it is awkward as fuck. Imagine for a second saying it to someone without cancer. No, seriously imagine it. Role play that shit out. See how ridiculous you sound?

Also, the truth is, when you ask me this you are either going to get an, "oh I'm fine" which is a lie, or you're going to get the truth. The truth, ladies and gents, is never what you really want to hear. Because when I tell you the truth you have no idea how to respond. Asking me this question is annoying because you turn me into either a liar by making me fake how amazing I am, or into a whiner which is not who I want to be. Just assume that I am feeling fine unless I tell you otherwise. Because really, I'm not feeling amazing. But I'm also not in agony. I lie somewhere in between and every time you ask me how I'm feeling I am forced to remember that things could, in fact, be better in my cancery Universe.

On top of it being extremely awkward, it is also extremely rude. When you send me these text messages or Facebook messages or when you see me in person and ask me this, do you ever for one second stop to think that maybe I am not somewhere I feel like discussing it? That this is not what I want to think about when I'm at practicum or when I am enjoying time with my family or friends? It demonstrates that you have no consideration for what I could possibly be doing and the fact that maybe I don't have time to be sad at that particular moment. Just because you want to discuss it, doesn't mean I am somewhere that I can. If you really care about me than all I ask is that you treat me normally. Speak to me as you would anyone else. If I feel like chatting about my cancer, I will. If I don't, I won't. And guess what? It's my fucking story so I will share it, or not share it when I feel like it! Treating me normally allows me the choice and the dignity of saving face about my cancer and is much more effective in preventing you from looking like a dickhead in my eyes.

A quick summary: "Hey Kayla! How are you feeling?" will result in a loud groan and possibly a swift kick in the shins. This is UNACCEPTABLE.

"Hey Kayla! How's life? Heard you were dating Ryan Gosling? That's awesome! How's your practicum??" is PERFECT. This results in you being a normal person and likely someone I will actually want to talk to. High five!

Number Two: Stop complimenting our toques, hats, headscarves, etc. You sound like a jackass. I am aware I have no hair. Unless I am wearing something really unique on my head (like a mini tiger or something you'd see on an episode of Sex And The City) you do not need to overcompensate and make conversation this way. Complimenting our bald look will go a lot further if you're trying to flatter us. However, DO NOT compliment our baldness unless you are genuine. Because trust me, we can tell when you're full of shit. It's okay to think I look like garbage without hair! Hell, maybe you thought I looked like garbage WITH hair! There is no need for any talk on this subject. All it does it shows me how uncomfortable I make you feel and automatically puts up an emotional brigade between us. I never usually walk up to someone and tell them how amazing they look in a typical conversation unless they are dressed up or something. So why do you feel the need to compliment me now when chances are you never did so in the past when I had hair? I'm bald. I get it. Now let's move on.

Number Three: I cannot stress this enough. Cancer patients are not 'heroes'. We are just normal people who happened to get hit with a little bit of bad luck. Sure some handle their cancer in ways that are maybe more 'inspiring' to you people. Some people put on their adult ginchies and go through cancer with a big smile on their face, plastering your newsfeed with motivational quotes and cancer ribbons. Others endure their journey by lying around pissed off and feeling like the world has dealt them a shitty deck of cards, barely lifting themselves off their beds to take a shower. Well I have some news for all of you. No matter how anyone chooses to go through their personal cancer journey, they are doing it just fine. If they want to be sad they have every fucking right to be sad. Because guess what? They have cancer. And cancer fucking sucks. You have no right to judge them for being down or negative. As for those who go through it with a smile and a positive outlook? They are not heroes. They are people who were forced to handle having cancer and were given no choice. They had no choice in undergoing treatment. They had no choice having their bodies pumped full of poison. They had no choice in any of it. They are not the super human you build them up to be. I am no more inspiring than you would be if you were dealt the unfortunate news of having cancer. You too would be left with no choices, forced to either comply with what the doctors say or die. When those are your only two options, it is fairly simple to become one of these 'heroes' you all speak of.

I must also ask what happens to those who go through cancer without this motivational attitude you all love so much? Are they not heroes? And what happens to the fighters who lose their battle? Does that make them any less of a hero than those who fought and won? Beating cancer isn't about your attitude or how inspiring you are throughout your journey. It's about your body and how it responds to treatment. Simple as that. Some people are able to beat it and some are not. It has nothing to do with attitude as much as you like to think and hope and pray that it does. It is my opinion that people like to believe beating a killer disease like cancer happens with a positive attitude because it scares the shit out of them to think of the alternative. It's fucking scary to think that even with a positive attitude and all the right motivation you may still end up six feet under from this disease. Trust me, that scared me too at first. But as my journey with cancer continues I have learned that despite a positive attitude, my cancer continues to thrive. Don't get me wrong, the positivity thing helps me cope a lot better sure. But it's not a cure and anyone who believes that your mind can beat cancer is seriously doing an injustice to all of us who are already dealing with so much. To place the blame of cancer upon the patient is not only cruel, it's ignorant. It is sad when you build us up as heroes. Putting us on a pedestal that can in the end leave us feeling disappointed in ourselves and to blame for something we have no control over.

While we appreciate the sentiment that we are inspiring to you, on behalf of cancer fighters everywhere I can assure you that we all politely say thank you, and then discreetly roll our eyes and later on journal about how ridiculous we feel when we are called that. Telling us we are resilient or badass goes a lot further than calling us heroes ever would.


Number Four - The FINAL Point: Please, for the love of all things cheesy and bad for me, stop telling me how to cure myself, how to eat, and what to do with my life. While I understand that all of these remedies come from a place of genuine caring, there is a reason they are not used to cure cancer. If drinking ten cups of puréed broccoli cured cancer, people would do it. Most of these remedies that you all see on Facebook and then randomly send to me are not actually cures. You never actually take the time to research them. You just see "HERB/TEA/ROTTEN BANANA KILLS 98% OF CANCER!!!!!" and suddenly my wall, inbox and phone are blown up with links (because trust me, you're not the only one who sent it. Chances are I already saw it weeks ago from someone else). Trust me, I believe in alternative medicine. It helps with a lot of symptoms and can also improve quality of life. But they do not cure cancer as much as you and I would like them to. Not to mention, do you honestly think I haven't looked into cures? Do you think I am so unaware of my health that I can't do my own research? It is almost insulting having you send me all of these tips and so called cures like you're some kind of god who is going to cure me.

Which brings me to my next point. What is even more insulting is when you message me randomly after not seeing me for years and say things like "stay positive!" or "doctors will help!" I've been dealing with this for almost two years. You've known for 30 seconds. I was staying positive before this chat. Now the only thing I'm positive about is that I want to punch you in the throat. Unless you have physically had cancer yourself or been in a caregiving situation with someone who has, it is very unlikely I wish to hear your opinions on it. Saying things to me like, "you should go out and socialize more, it's good for your healing to be out" will not only guarantee that I do not attend your event, but also that I will likely not want to speak with you again. As well, and this is common with all of my cancer warrior friends, STOP ASKING US OUT FOR COFFEE. Did we ever go for coffee before? No? Well, then why start now? This whole coffee gesture is one of two things. It is either a way to help you relieve your guilt at not being closer with me before, or is a way to get information so you can gossip about it to people we both know. If we were not friends before there is no need to start now. I still go for coffee with the people I always have, but I feel no need to suddenly go for coffee twenty times a week with the people who are not talking to me with genuine intentions. I became the most popular person ever once diagnosed with cancer. People who never spoke a word to you suddenly want to take you out. Co workers who hated you are suddenly phoning. Yet somehow you become the asshole when you decline their offers to go for coffee because they do not realize that you have twenty other messages in your inbox asking you the same question. Remember this please the next time you speak to your acquaintance/friend/co worker/lover with cancer. If they were an acquaintance before, it is perfectly acceptable that they remain one now. If they were less than that, than leaving them there is great too. Offering your condolences or best wishes is kind, but leave it at that. They do not need anymore tips on juicing or invites for coffee. Sometimes the best thing you can do is simply respect their space.


In the end I could have written about ten more points on this subject. To be honest I am fully aware of how hard it is speaking to someone with an illness, never mind a terminal one. Prior to my diagnosis I was not nearly as informed as I am now. Granted I had already had traumatic experiences with cancer and was more informed than some. I empathize with those who have been blessed and have not had such experiences and are subsequently left blissfully ignorant of what I face daily in my cancery world. They are lucky and I hope they never have to learn these things the way I have. But if this post can help save even a few relationships from an awkward moment than my job is complete. What it comes down to when speaking to anyone with cancer is pretty simple; Let us live as normal of a life as possible. Treat us as you would anyone else. If we choose to open up to you or ask for something than you can go from there. But remembering our dignity and our personal privacy is so important. Our lives have been taken from us and often many of us feel like we have no control over anything. Respecting us enough to remember that we have control over how or when we choose to speak about our cancer is so important.

Thank you all for taking the time to read this long winded post! I hope I still have a few friends left after, and truthfully, hope that some of the phonies will bugger off. Please know that I do genuinely appreciate all the kindness so many of you send my way. I promise to keep the next one shorter and less intense :)

An Update

I will start by saying thank you to everyone who listened and respected that I needed some time to process everything. As much as I love and appreciate all of the support there are days when talking about everything just does me more harm than good.

So where do I start? As I said the cancer has continued to spread. What started off as three small tumours has spread into the bone and vertebrae in my lower back. Two of the tumours in my abdomen are gone, but the tumour that started this all will not respond to chemo. Radiation is no longer an option for it as it's already been radiated. Surgery has also already been tried and would put me at major risk. The chemo we tried was not able to destroy the tumour. I will now be doing radiation for the back portion and will hopefully be offered a clinical trial to try and treat the tumour in my abdomen.

As you can imagine this is some of the scariest news I have ever received. If a clinical trial is not available....I don't even want to think about what happens then. Basically we are out of options at this point. Because I have already had 25 rounds of radiation to my abdomen it is impossible to radiate there again. I am still unable to process this is in any meaningful way. After enduring what I have for so long I am just feeling very let down. After all my perseverance there comes a point where it begins to get really hard to stay positive. I am not sure if I am just supposed to start preparing for the worst or continue being hopeful to just be let down again and again.

Unfortunately this post doesn't have much feeling behind it. I am struggling to find meaning in something that has so tragically stolen a lot of my entire existence. I am hopeful that soon the pain will be gone and I can hopefully go back to work to maintain some sort of a life. My oncologist has said that school is not a good option at this point so with two days left of what should be my final semester ever I am again forced to delay my education. This time maybe forever. This also means the position I was likely going to be offered at my dream job in April is also being taken away from me.

This illness has consumed my life since 2012 and I am heart broken that I am forced to spend my new year and my 23rd birthday having more treatments. I am finding it difficult to look at this in a positive way at the moment. With cancer there are four main areas of general gradual decline; the diagnosis, the recurrence, clinical trials, and then finally...the end. We have reached the third level. Damn close to the end. After everything this cancer has remained smarter than us and continues to find ways to thrive. Our only hope at this point is alternative treatments and that is fucking horrifying. Should there be none or none that work...well we know what happens then.

This post is not to look for sympathy or worse, pity. I feel as though it is important for my friends and followers to know as this is quite heavy news. I am scared. I am petrified actually. But I am able to carry on each day a little better. At the end of the day the cancer is here no matter what. And if I only have a short time left on this earth then I choose to spend it having fun and laughing with those I love. 

That's all that I really have at the moment. Hopefully in the next few weeks I can process this all a little better. I am focusing all of my energy right now on sending out good vibes into the Universe in the hopes that a miracle happens. Thanks to all for your continued support and I will be sure to keep everyone updated as things change in the next few weeks.  

Just Your Typical Christmas Post

I'm feeling inspired. I'm feeling inspired to write about...I'm not quite sure. My life maybe. Or maybe the fact that I am still able to have one. Last year at this time I was being released from the hospital. I weighed slightly over 100 pounds and was strongly advised to begin taking an anti-depressant. The cancer was gone but at the time it felt like my spirit was to. Instead of being grateful that I even got to celebrate Christmas I hoped and prayed to just stop existing. Because really what's the point of breathing when you're not really living?

This year the cancer is back but my spirit is alive. And kicking. And dancing. It's dancing like it's had one too many actually. Although I am not 100% as I sit and write this I am happy to be here. Genuinely happy to be a part of the Universe that I believe some crazy divine entity has created. I have been blessed with many who love me. My circle is small, but meaningful. The thought of leaving any of these amazing people makes me literally want to puke.

I am often in pain and there are days when I feel like whoever created me has given me too much garbage for one life time. Days when I think the Universe has been unjust in the cards it has dealt me. I have truly lived more than many double my age. I have dealt with so much loss and so much dysfunction in my 22 years that there are days I honestly believe I was put on this planet as some sadistic satisfaction to an unholy spirit. I do not mean to sound dramatic or whiny. But this is my blog and I can say whatever the fuck I want. The point is, this Christmas has reminded me of something that I have been forgetting lately. It has reminded me to always remember the little things that matter. The things that no matter how hard things get always make me smile. Things like my Dad surprising me at the hospital. Or my Mom making my favourite dinner when I visit. Or waking up to the amazing good morning texts I receive every day. Or mine and Betty's inside jokes. Or my friends surprising me with flowers. You get the point. The list goes on and on. I have forgotten that these are the things that truly matter. The moments where I am so full of love I feel like it should explode out of my ears.

I hope that this Christmas you felt that way. I hope that you felt so warm and fuzzy you actually thought maybe you had a fever. I hope you continue to feel this way and I hope you never forget to remember the little things. Merry Christmas to everyone who is bored enough to read this - May the Universe bring you health, happiness and love in the new year.