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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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16:08
Monday 20 June 2011
shaken and definitely not stirred.

Hello readers! This isn't going to be a very long entry, but I just thought I felt like sharing this little experience of mine while I was in the hospital last Tuesday - the day I published my previous entry.

I did mention that I had my stem cells extracted and collected for harvesting. During the start of my session, I felt my chair vibrate. I thought it was just the machine producing strong vibrations, hence causing the chair to vibrate. I shrugged the thought away and continued observing the machine; being in awe of its complexity.

Then, the bed that was in the room started to shake as well. I assumed it was just me feeling dizzy since I was having my blood extracted from my body for filtering. My assumption continues for the next few seconds till one of the oncology nurses who was using the bed as a makeshift table jumped up from her chair so suddenly, and started asking both my parents who were there, "Did you feel that too? The place is shaking!"

My parents felt the tremors too. I then realised that the vibrations from the chair I was sitting on wasn't because of the machine, but from the earthquake that happened in Indonesia on the same day.

I am very lucky in the sense that we only felt the tremors, and things weren't too serious. Imagine me having to evacuate the hospital with me connected to one complicated and heavy machine! (I was on the fifth floor by the way.) Not forgetting the patients who are undergoing surgeries and other complex medical procedures, because quite a number of Malaysians who felt the tremors are forced to evacuate the buildings they were in.

The last time I experienced tremors was back when I was still in secondary school. I was attending a Japanese class when suddenly the tables and chairs in the classroom started to shake!

I'm thankful I'm living in Malaysia, where we are earthquake-free at the moment. Hopefully we all can stay safe with all these natural disasters happening around the world.

Cheers!

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17:06
Tuesday 14 June 2011
changes.

Hello readers! I shall try not to type anything irrelevant and focus on just the events that occured since my last entry.

Firstly, I had a PICC line and CVC line inserted.

The former is done because:
  1. I require multiple blood and platelet transfusions due to my low blood counts caused by chemotherapy.
  2. I require multiple blood tests which needed blood to be drawn out quite frequently.
  3. It is needed for my bone marrow transplant. I'll have to undergo a high-dose chemotherapy to kill basically nearly every living cell in my body - both cancerous and non-cancerous cells.
  4. It will certainly make my life slightly easier, because then I won't need to have needles poked/inserted into me many times. With a low platelet count, my blood can't clot easily like an average healthy person, i.e. there's a possibility that I can literally bleed to death. Scarring will also be more serious, and both new scars and old take a much longer time to heal.
The latter is done because I need to have my stem cells extracted for harvesting for my bone marrow transplant. I went for one session yesterday, and another earlier in the morning. Hopefully I had enough stem cells collected, or I'll have to go for another session. It's quite a tiring procedure, because from how I see it - stem cell extraction works like kidney dialysis. How I would bluntly describe the process - many tubes are connected to my CVC line and to this machine, which takes my blood out and extracts my stem cells. This takes around three to four hours, maybe longer. Not something I would ever like to experience again, really.

Secondly, I have been in KL staying in the hospital for long periods of time. I can hardly remember how home in JB looks like, since I have been away so much. The moment I'm admitted, I never see the light of day(the view from the window doesn't count) till I'm discharged. And when I'm here, I normally have to stay for a minimum of five days. Go figure.

Thirdly, my side effects are really a killer this time. I'm not going to mention each and every one of them here, but I'll talk about the one that bugged me the most. I had this sore throat that was so severe, words like 'awful' and 'horrible' aren't enough to describe how bad it affected me. Something simple like swallowing became such a chore! I would equate the pain to having someone force a small sharp-edged rock down your throat. Now, imagine that kind of pain every time you have to swallow food, water and even just saliva. Not forgetting that I also had pills to take. The pain was really so bad, I tear up every time I had to swallow anything. It didn't help that I had ulcers all over my gums and tongue which conveniently multiplied the pain and discomfort of eating and drinking. Lesson learnt here - never take eating and drinking for granted. I feel lucky that I didn't need to be fed through a tube. So should all of you normal, healthy people!

Fourthly, I am recovering from a blood infection. It caused me to have a fever of the highest temperature yet - 39.8°C. I am very glad I am still sane enough to type this entry out.

Last but not least, I am proud to say that I am bald again. Like hey, which other girl you know is willing to go bald not once, but twice and had actually done it? The whole hair loss episode haunted me again shortly before me returning to KL for my third chemotherapy session. I thought it would be more practical to just shave all my hair off and spend my endurance in facing the gruelling side effects of treatment. My mum mentioned to me about getting me a wig a few times with my dad supporting the idea, but I declined. I mean, to invest in a good wig is quite pricey and my parents are already spending a whole lot of cash just to get me well and treated. I honestly don't want to add to their already existing burden because I'm insecure about my looks! I personally know that I will definitely rant about my insecurities here one day about how I currently look like, but I don't think that's going to be the main issue for now. And truthfully, it never will be.

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I kept this blog locked for a few days because I wanted to make some minor changes to the layout and make it more reader-friendly. I blame fatigue for not letting me do it all in a few short hours, which is why it took me a couple of days to sort everything out. I'll add in new things here and there once in a while, so if you're not too busy with your current lives do feel free to drop by!

I hate to sound like a parrot, but to those who are truly concerned about me, have been leaving me really nice messages on Facebook and remembering me in their prayers - they have my sincerest thanks. I also apologise for not replying to everyone that contacted me. The people-pleaser part in me is nagging at me a lot, and I feel obliged to reply - which brings up this immense guilt in me every single day. I do feel bad for not responding right away and possibly making people worry, but I'm just not up to it with my current energy levels. It might be too much to ask, but I hope that everyone can try to understand this, forgive me for very late responses that may come months after you contacted me and not assume what you don't know. To be assured of that will seriously make me feel a lot better about myself and going through treatment won't be all that bad after all. (:

Cheers!

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