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Hello! I'm Leonie. I’m from Malaysia. I am nineteen this year, and I have Non-Hodgkin’s Lymphoma - a kind of blood cancer. I’m just trying to live my life to the fullest, without any regrets. I'm grateful that I’m still able to wake up to a brand new day and know that I'm still alive.

I refuse to refer to my condition as a disease. I would rather phrase it as a 'series of unfortunate events'.

I learn something new with each passing day. This is the story of my journey, and you're welcome to follow me in every step that I take.

If you would like to learn more about me and my condition, feel free to click on the navigations below. If you have any queries or would just like to say hello, drop me an e-mail at dancingpapercranes@live.com.my and I'll try to respond as soon as possible!

Cheers!




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15:07
Friday, 1 July 2011
it's nowhere near over.

Hello readers.

I haven't been online for the past few days. I've been busy packing for my one-month stint in the hospital for my stem cell transplant. Today is only the third day, and things are not going so well as I thought they would hopefully go. Sigh.

I already felt homesick since day one, knowing it would be a long time before I get to see home again. It also didn't help at all that my supposed three-week stay here got extended to an entire month, as this detail got conveniently left out by my doctor. No thanks to him here! (The more sensible side of me know that the extra one-week stay is for observation purposes once all the necessary procedures are completed, but I'm currently feeling very stressed out, frustrated, angsty and whiny all at the same time, so do bear with me please.)

The first day wasn't too bad, until I found out I had two injections and six pills/tablets to swallow before I went to bed. One injection serves to thin my blood because as there is a risk of my blood clotting and causing complications during my high-dose chemotherapy sessions (to be done six days continuously, starting from yesterday onwards), another is a kind of vitamin, i.e. Vitamin B12. The former is a daily injection - but it cannot be injected into my body through my PICC line. It has to be done subcutaneously at my stomach. Trust me, I'm no big fan of needles at all.

Yesterday morning, I had to go through this contract/consent form that was penned out by a lawyer (another random fact courtesy of my doctor) and I started to feel depressed because of it. Secretly, I was also tearing up but of course I was not going to let my parents see that! Basically, it described the procedures of my stem cell transplant, the types of chemotherapy drugs administed to me throughout the course of this treatment, possible side effects (I felt like I wanted to just break down when I saw that one of it was death. Less than 10% of patients who had gone through with this treatment died. Who knows, I might be in that unlucky 10%? I already feel unlucky enough to be diagnosed with cancer, with no obvious sign of total recovery.), and what has to be done if so-and-so happens.

I felt like hope has really dimmed out for me. I am truly aware that there are kids, the elderly, or anybody out there that could be living a harder life than mine. I should be blessed for what I already have at the moment and how I managed to complete my basic education before moving on to this more complex and difficult part of my cancer journey.

I should be feeling lucky that I'm still alive.

I'mt not going to lie, nor am I going to make matters sound more dramatic than they already are - but it's the plain truth, things are getting very complicated regarding my condition.

Last year, my cancer was still considered under control. Now, it's getting more aggressive. I don't exactly know how to describe this to everyone, but since starting my second chemotherapy session in April - I can feel myself getting a whole lot better, then a whole lot worse. After each chemotherapy session (I had three, so far), I'll suffer from the side effects, then get better, and then when I go back to the hospital for my next check-up - the results of my blood tests show that my cancer cells have gone back up in high amounts. Before the results of the blood tests are out, I can already feel the cancer cells are growing again inside my body a few days prior to me going for my scheduled blood tests.

It scares me really that everything is so uncertain. It scares me that I could die and not wake up in this realm again, when I have so much left that isn't done. It scares me that this stem cell transplant isn't going to cure me 100%. It scares me that this transplant isn't the last of my treatment course. It scares me that I'm most probably going to need another six months to a year in getting rid of all of the cancers cells inside my body. It scares me that everything is so expensive, my parents are really financially burdened, and it pains me so badly that I'm unable to work, not even as a simple waitress or a dishwasher maybe to relieve them of this burden.

It saddens me that I haven't met up with my friends for a long time, then it scares me that my friends are eventually going to forget about an existence of an old friend named Leonie, whether I'm alive or dead. I do miss them so much, and it hurts to feel so left out from so many things, in terms of education, events, getting to know new friends, or just hanging out. The sad truth? Friends are just going to mourn about me for a while when I'm dead, and then move on with their individual lives. I know that wouldn't be the same for my family though, there is some comfort in that - but it saddens me again once more that they're the ones who are going to suffer from emotional and financial pain if I happen to not survive from this ordeal.

I am tearing up so badly from typing this post out, but my mum is nearby and I don't want her to see me cry.

I regret not taking my health too seriously, I was stupid for trying to complete all of my school assignments and stay up really late into the night and not getting enough rest, when I should have just given up and get punished by the teachers. Even though I'll get a bad name in school, at least there's a chance I'll be a healthier person than now and I get to enjoy life after high school. I regret not having enough fluids in my body, since I wasn't a big fan of drinking lots of water before. I regret for not treasuring my life before this, when now I'm just struggling to keep myself alive and well.

I'm getting tired from all of this cancer shit, I'm not going to deny. It has cost not only me, but also my family members and my closest of friends a lot. I'm not as strong as everybody thinks I am. I'm trying to be an inspiration to people, to let them know that their lives aren't bad at all compared to mine, to let them know not to take anything in their lives for granted. But it's getting hard to remain positive and optimistic.

I'm sorry, I do have my moments when I feel awful like this. Instead of criticising me and telling me off for these emotional breakdowns and giving some of you the impression that I'm being a weakling, like some of you unfortunately do - please, if you're truly a friend, I really need your continuous support, love, prayers and encouragement. You have my most sincerest thanks and no words can describe how grateful I am just to have all that from all of you.

I am going to feel extreme fatigue throughout my current treatment. I might be too tired to go online at all for the next month, or I might be able to go online once in a while, but I will not be able to respond to anyone if I get too tired. I'll be reading your comments, so do know that I appreciate them so much.

Till then, stay happy and healthy everyone. No matter how bad you think your life is, know that there is this blogger and cancer patient who has it worse than you, and you have no idea how much I want to live your life.

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