not my best Christmas...

So as I was saying before, these past few weeks have been really hard, and yet they have managed to get worse.  The first week I was put on high dose methotrexate (chemotherapy) and that took a lot out of me.  I went home hoping for a week of recovery time, but I realised if I did that, I would then be in hospital on Christmas. I was home for one night, and then I went to my uncles because he lives a lot closer to the hospital.  I went to the hospital everyday for an other week getting various chemo therapies, they were all very long days. Then I finally went home, to see my mom for her birthday.  After a couple nights at home, we had to go back to the hospital for a check up.  My counts were so low, and I was so dehydrated that the hospital said I had to spend the night there and get some transfusions.  They released me on Christmas Eve and I went home and relaxed with my family but I still wasn't feeling well. By the time Christmas came around, I managed to get out of bed and do presents but then I got a fever and my mom and I had to go back to the hospital :( I was only supposed to stay for 48 hours but they found an infection in my blood, and i wasn't able to eat or drink anything because I had really bad mouth sores and couldn't stop throwing up, so now I have to be here for at least 10 days. I have something wrong with my intestines so they're treating me for that, but I also have fluid under my knee cap and there is something wrong with my hip, so I can't really walk.  I still have pretty bad mouth sores and still can't eat so I'm on lots of IV meds, and they're giving me nutrition through IV as well. I'm hoping to get better and go home soon because it honestly feels like I haven't been home in forever, and I'm just really tired, sore, and sick of the hospital.

So these past few weeks have been pretty rough, and I've decided that until everything gets a little more regular, the Thursday blog post thing just isn't going to happen, however, I will try my best to write one every week.

schooling

A lot of people ask me what I am doing for school, so I thought I would just make a quick post about it.  I am enrolled at CDCI East, in cobourg, but technicly I am home schooled.  A teacher at the East provides me with work to complete at my own pace.  It's not like regular home schooling, I don't have any due dates, or anything like that.  Work has been really hard for me to do, and I don't do much of it right now, because when I'm really not feeling well I don't want to be sitting around doing work, but when I am feeling good I want to be out doing things. 

so many emotions

Lately I've been less myself and more an emotional roller coaster.  I've been really struggling lately, not so much with sickness, but just with all of my feelings, it's been really difficult.  I feel like I catch myself feeling sorry for myself too much.  It's hard looking at everyone else playing in the snow and building forts, skating, and sledding, when I know that I can't do any of that.  I've had cancer for almost a year now, and I really miss my friends, but I also really miss my old life.  I miss going to school, I miss having strength, and the ability to walk and be stable, I miss what I used to look like.  I feel like I'm pushing people away, not because they've done anything wrong, or I don't like them anymore, but it's because in reality, I am so self conscious.  It doesn't matter how many people tell me "you're beautiful with or without hair" because I don't feel beautiful.  I know I look nothing like a regular teenage girl, or myself before cancer, and I don't want people to remember me like this, I want them to remember me as the girl I was. I feel bad pushing people away, and I do want to be with them, but right now I just like being alone, and I can't decide whether or not that's a bad thing.  

its thursday and im on time!-blood donations

Today my Thursday post is going to be about blood donations.  I want to raise awareness on what happens to blood when you go to a blood clinic and donate, because a lot of people have the wrong idea.  A lot of people, including myself before I got cancer, think that the blood just goes to people that have been in an accident of some sort and lost a lot of blood.  In reality any cancer patient needs tones of extra blood.  I have received over 20 red blood cell transfusions so far, and I will continue to need them.  Also when you give blood, that blood gets separated into many different things, including red blood cells and platelets, I have also received several platelet transfusions.  Without these transfusions, I wouldn't be here today.  It's not just cancer patients that receive transfusions, it's tones of people that have an illness who are in need as well.  It takes four people to create one blood bag.  When you donate blood you are saving a life somewhere, you may never know who or when, but at least you know you are making a difference.  I appreciate anyone who has ever taken the time to donate blood, it may not seem like a big deal, but seriously, for someone it's life changing.

incredible support

I wanted to share this with everyone a long time ago, but frankly I just haven't had the time.  I switched schools just before I was diagnosed but the school that I left I really liked.  It was ENSS in Brighton, Ontario.  Anyways, I had a friend there named Maddy, we weren't super close, but we were pretty good friends and when I left and got cancer, we pretty well lost touch.  Understandable, seeing as we both had fairly busy lives and difficulties to deal with.  Not long ago, Maddy messaged me, we hadn't talked in weeks, maybe months.  She explained to me, that she had been reading my blog and Facebook posts and felt bad that I was upset over loosing my hair, so she and her boyfriend, and a team of friends got together and worked really hard and raised $470 to buy me a wig and surprise me with it for Christmas.  I'm honestly so touched, there aren't many words to describe how I feel, the support and kindness is just unreal.  I was really surprised and not expecting that at all, but I can't tell you how much I appreciate it, the thought of it all is just so nice.  Thank you so much to anyone who was involved, especially Maddy, Jamey, and Rebecca. You guys rock.

i suck.

Wow I seriously suck at keeping up with my blog sorry guys, I'm going to try harder I really am.  It has been really crazy for me lately, I just finished an other hospital admission and this time around it hit me pretty hard.  I have really bad mouth sores, headache, and regular aches and pains, but the cells in my feet are broken and inflamed, and I have this weird reddish, purple rash on both my feet and my hands, and its really quite painful.  The doctors think its a reaction to one of my drugs but they aren't sure which one because they have never seen this before.  That's the update for now! The good thing about not feeling well is I get my moms cauliflower soup, it doesn't get much better than that. Also when I went in to the hospital to ask about my rash, my step dad came with us.  Unfortunately he rarely gets to come, or be involved in stuff like that because he is working hard to cover two incomes.  So it was really nice just having him there with me for support, and to see what goes on when I go to the hospital.

update

Its been a really long time since I've made a blog post, so I think I'm going to start making a new post every Thursday, that way I'm doing at least one a week.  Lately I just haven't had much to say, nothing is going out of the blue wrong, but I'm not doing all that great either.  I'm just kind of blah.  One thing that I would love to share, is that the Cobourg cadets threw me a benefit dance the other day and raised $1000 for my family, which was just incredible.  Big shout out and thanks to my neighbor, Sue who made it all happen:) your support is truly appreciated!

learning new things

I have recently came to the conclusion that my hair growth is decieving.  Not too long ago, my hair cells started to come back slowly.  It wasn't much but it two months time, I had fuzzies all over my head, I had a full set of eye lashes, and eye brows, and I was even growing leg hair.  I was extatic because the doctors always said that my hair would not start to grow back until maintenance(a later stage in my treatments), so I just thought that I had a head start and my hair would have more time to grow for school.  A couple weeks later, all of my fuzzies fell out, my leg hair was gone, and I have now lost my eye lashes& brows.  It turns out that my hair cells will continue to do so, until I hit maintenance.  It will grow and then fall out, a bunch of times before it really starts coming back.  I find this extremly unfair and decieving, losing your hair once is hard enough, but to lose it over and over is just not right.  I also recently found out that there is a very good chance that when I'm done with cancer, I could very well not be able to have children.  I don't really have many good things to say about that, I am just bummed. 

Positivity is Key

A lot of people ask me how I deal with cancer, and every time my answer will always stay the same: I think positively.  That's what I did even before I was diagnosed, using positive thinking is a great thing to do in any situation.  Even in your deepest, darkest times, there is always a bright side.  It may be small, it may be hard to see, but it's there, and if you can find it, you know that things aren't all bad.  It's also important to know that it can always be worse, even in my situation, I think hey, I still have a kick ass family, I have all my limbs, it's not terminal cancer, but most importantly I WILL GET BETTER. I take it one day at a time, and each day that goes by, is a day closer to health.  There are so many positive thoughts, that I tell my self each and every day, and I have gotten quite good at it, but for the days that I forget, I have my supporters.  You know who you are.  So to any one that is reading my blog that may be struggling in some way, shape, or form, this is my suggestion to you.

Terry Fox Run

On friday, September 27th, my old school, ENSS held a Terry Fox run.  So many people I knew were running for me, and it was really touching.  I really miss ENSS because it was a big part of my life, all of my closest friends still go there, and I'm really hoping i'll get the chance to go back.  I think the Terry Fox run is a really powerful day, and that it is truly amazing that one man made such a difference.  Since so many people were running for me, and all of my friends were going, I thought the least I could do was show up at the finish line and be there supporting them.

fever admissions

Admissions suck.  There's no getting around it, they just suck.  For those of you who don't know, an admission is when you have to stay over-night at a hospital.  Most of the time, when I'm in for an admission it's because im getting chemo, they usualy last for about 6 days, and im scheduled to go in every two weeks.  My problem, is that i always seem 100 times more sick in hospital than I do at home.  In hospital you have nurses coming in waking you up all throughout the night, every one wants to take your temperature and your blood pressure, and the food tastes like hospital food.  Not only that but you are attached to an IV pole that beeps really loudly almost every hour for the entire time you're there (I have named my IV pole Stuart, because I think everything should have a name).  If I wasn't already really sick because of the chemo, none of this stuff would seem so bad.  I've gotten used to the chemo admissions though, because you know when they are coming so you can brace yourself for them.  When you think about it, after every admission you are just one step closer to being done with all of this, thats what I always think to myself when I'm feeling down about being in the hospital and feeling like crap "This too shall pass".  The reason I haven't blogged lately is because I have been in hospital for a different kind of admission, this time it was because I got a fever.  I know that might seem silly to most of you, but when you really think about it, I have pretty much no imune system, that means I have no good cells to fight off anything on my own.  When you get a fever, that means your body is trying to fight something.  So if I didn't go into the hospital right away, and gotten lots of antibiotics, the simple little cold that I have, would have killed me.  Fever admissions arent as bad as chemo admissions because you aren't getting medicine that litteral kills all cells in your body, but you have to sit there for 4 days, getting antibiotics, which have some pretty nasty side effects.  I'm still laying in my hospital bed, i'm on the fourth day of being here, so I should be going home right now, but I'm not sure if they are going to let me leave or not because I'm pretty sick.  There isn't much good to this post, but I really want every one out there to enjoy the lives that they have to the fullest.  Enjoy your home cooked meals, enjoy your feelings of health and strength, and family and friends, because not everybody has that.  So when you do have all that, It's important to realize it.

What comes after cancer?

I have been doing a lot of thinking lately, and as much as having cancer sucks, I'm a little worried about what life is going to be like after I'm done with cancer.  It's not just a break in my life, for a teenager 3 years is a long time, and I'm missing out on a big part of my life.  It's life changing really, everything is different, my health, my thoughts, my feelings, my dreams, everything.  So I wonder if I'll ever be able to be back sitting in a class room filled with girls gossiping about drama, and boys doing whatever teenage boys do, to me those things don't really matter anymore.  I used to care about things like drama, and who's dating who, and what the supply teacher is wearing, but honestly none of that matters any more, the world is so much bigger than that.  I see status' about how there's a cold going around and people write things like "omg I feel like I'm dying! Sooo sick D:" and I just roll my eyes at it because they don't know the half of it.  Not that I blame them, how are they suppose to know?  Most people don't have to go through this, ever.  I just feel really different, and I'm going to have these memories with me forever, so it kind of makes me wonder if I'll ever be able to really connect with an average person later on.  I'm not sure if that sounds shallow, or makes me crazy.  I'm just worried I won't ever be "normal" again, even without cancer.

Every day struggles

Every day I have a different struggle, but the main thing that is a constant battle is walking.  When I got cancer, I lost all of my energy to do literally anything, so I haven't gotten hardly any physical exercise.  When you are sitting and laying down that much, for that long, you would think you would gain weight.  I was the exact opposite, I lost all of my muscles, and the disease itself makes me lose weight constantly.  Because of this, it makes it very hard for my legs to support me.  One of the chemo drugs that I take, has a side effect that gives me a condition called foot drop.  This means that my ankles are very delicate, and weak, and I cannot lift my feet on my own, so walking like a regular person-heal to toe, is next to impossible.  Its really hard to gain back muscle, yet you lose it unbelievably fast.  I really don't like not being able to walk properly because it means I need help all the time, it makes me feel vulnerable, and needy.  It's also scary because if I fall, I can't get back up on my own, so I'm never allowed to be left alone.  An other struggle that I have on a daily basis, is the nausea.  In the past 6 months, I have thrown up 10x more than a regular person would, in there entire lives.  You learn to keep going though, if every time you puke, you stay in bed for the rest of the day, you're going to be in bed for three years, and that's just not realistic.  My family and I try to make light of any and every situation, for example we named my puke bucket Vern.  It may be a little thing, but it does make a difference.  Saying "can you pass me the Vern?" is a lot nicer than saying "get me the bucket!".  Moral of the story is, thinking positively and making light of any situation, makes everything easier, and a lot more bearable.

Make a Wish Foundation

Every child under the age of 18, that has a life threatening illness, is eligible for one wish from the make a wish foundation.  You can ask to meet someone, you can ask for something, or you can ask to go somewhere.  This ranges from all sorts of things, like spending a day with your favourite celebrity, or getting a hot tub in your back yard, or you could take your entire family to Hawaii and go swim with the dolphins.  I qualify for this wish, but I honestly have no idea what to ask for!  I am not going to wish for anything right now, but it has to be before im 18, I am 16 now.  I've done research on some of the things that other people have wished for, and some of them are really touching.  There was a little girl who wished to "give back", so she wished she could give every cancer patient in that hospital, a bunny and a blanket, because she had a bunny and blanket and that is what gave her hope when she was feeling really ill.  So rather than wishing for something for herself she wished to give other cancer patients hope.  The fact that such a young girl has that big of a heart, truly moved me.  Most children wished for things like swimming with the dolphins, or going on a Disney cruise was a big one, or wishing for a Pony, or the latest laptop.  I wanted to wish to help build a school in Africa, but the reality is, Africa is not a healthy place, and it would be dangerous for me to travel there when I could get more ill than I already am.  I was also considering taking my family away somewhere for a week, because they are suffering through this as well.  I am not sure where I would go though.  I'm looking for suggestions, as to what you think I should wish for.  I'd love to hear all of your creative ideas!  If you would like to give me a suggestion, or tell me what you would wish for, or even if you have a wish story of your own, please leave it in the comments:)

Philadelphia Chromosome

Not only do i have leukaemia, but shortly after I was diagnosed, the doctors found a disease on top of my disease.  It is a very rare condition, called Philadelphia Chromosome.  Less than 3% of the population gets it, but lucky me I get this one and cancer.  In the past ten years there has only been one other person that I am aware of, that has received this diagnosis.  My doctor has only ever treated one other person with the Chromosome, and that's the only person that I have heard of with this disease,ever.  If I had this three years ago, I would have been as good as dead, they only recently came out with the cure.  The change in technology in these past few years has been absolutely incredible, and even though I am very glad that they found a cure, it still complicates absolutely everything in my treatment plan.  The Chromosome makes it a lot more difficult to cure the leukaemia, so I get double the amount of chemotherapy, that a regular leukaemia patient would have, and I have to take two nasty chemotherapy pills everyday.  Because I am on so much chemo, it makes it really hard for me to recover on time.  My treatment plan says I will be on chemotherapy for 3 years, but as the days go by it seems to be getting longer, rather than shorter, every time I don't recover fast enough for my next dose of chemo.  It has been really hard going through this disease, because even though I'm always surrounded by tones of people with cancer, nobody has the same kind as me, I couldn't relate to anyone. I have always felt alone, and very different.  It was also scary because nobody even told me what happened to the other patient that had the same thing as me, all I knew was that he and I were the only ones, and he was diagnosed within the past ten years, I didn't have much to go by.  A lot of the times when i was in the hospital for days on end, a nurse would look at me and tell me that he's the only one shes ever seen throw up as much as I did.  At this point I was very curious about who he was, and if he made it out okay or not, but they couldn't tell me because of privacy reasons.  Today when I was sitting in the hospital, waiting for my blood counts(I'll explain those in a different post), my mom started a conversation with a boy next to me, I have seen him around every once and a while but never really took the time to have a decent conversation with him.  She asked his age, and what type of cancer he has, he said "almost 17, and leukaemia as well as a rare disease called Philadelphia Chromosome".  I couldn't believe my ears.   We sat there and talked for like an hour, it was so nice to finally not be alone.  I am so glad that I now have some one to talk to, and relate to.  I can't believe that for the 7 months I've had cancer I've never met him, but I'm so glad I did.  I hope we stay in touch.

hair party

This is me and all of my closest friends, the day that i said goodbye to my hair.  I knew that I needed to cut it off, because my hair was falling out rapidly and it was getting everywhere, but I really didn't want it to be a sad day.  I decided to to have a party in my hairs honour instead.  I got all my friends together and my close family members, and we had ice cream cake and pizza, and we all gathered around and took turns cutting my hair into different styles.  I went from having boob length hair, to shoulder length, to a bob, to Rhianna style, to a Mohawk and a bunch more, it was fun.  We turned what should have been a life changing, sad moment, to a fun, loving party.  There was so much love and support surrounding me, and I honestly couldn't have been happier, if I could go back, I wouldn't change a thing.

Things to remember about a cancer patient

• They're still the same person, even though they have a disease, their personality is the same, and they will have the same thoughts towards you as they did before they were diagnosed.  So don't treat them like they're a different person.
• Ask them questions!  Don't be afraid to ask, we want you to be aware and involved, so you know what's going on.
• STAY IN TOUCH.  When I got cancer, I lost over half of my really great friends, just because they didn't know what to say, so they chose to say nothing at all.  Cancer is scary, but what's scarier, is going through it alone.
• Don't talk just about cancer, talk about regular things as well, make them feel just as involved in your life.  
• Things like "how are you doing?" and "any updates on whats going on?" are really simple little things to say, that make us feel like we can open up to you, and tell you what's going on. 

How it began

I was diagnosed with leukaemia on March 27th, 2013.  I had been sick for about a month or so, and my parents just thought I had an iron deficiency or something, seeing as I had poor eating habits.  I progressively got worse, so my mom took me in to get blood work.  The results came back the next day, and they immediately sent me to the Kingston General Hospital, suspecting I had cancer.  I was too ill to be put out, so they had to keep me awake while the doctors did a bone marrow test(when they take a piece of my bone out and test it for cancer cells).  It was extremely painful, but we only had to wait about an hour before the doctor came in and confirmed my disease.  I think I went into shock, nobody really said anything, we all just sat there and cried.  If there was anything good out of that day, it was the amount of love that was in the room.  I had almost my entire family by my side, and none of them left me.  It was a hard day, but I think it brought my family closer together, in more ways than one. 

what i'm going to be talking about

I don't think people are aware enough of what having cancer actually means, or what it's like.  I would like to change that by using my blog, I'm going to be writing about my everyday life; the struggles, but the good things as well.  I'm also going to be writing advice on how to act and respond towards cancer patients.