Profile
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!
Cancer in My Point of View
I was officially diagnosed with Non-Hodgkin's Mediastinal Large B-cell Lymphoma in July 2010. I was seventeen. I was in Form 5; my last year of secondary school, preparing to sit for the SPM examinations.
I would consider myself an average teenager - a girl who just wanted to have fun, with her quirks; trying to survive life as a teen.
It all started with me coughing non-stop after a bout of the common flu. Despite making several trips to my family doctor's clinic, the cough just won't seem to go away even after months of being under medication. Several prescriptions of cough drops later, my family doctor suggested to my parents and I to have a chest X-ray done for me.
A large tumour was discovered; situated in between my lungs, right in front of my heart. The tumour was pressing against my trachea, causing me to have slight breathing difficulties and all that coughing.
I stopped going to school almost immediately. My parents and I went on this journey to seek advice from specialists regarding my condition.
Next, I had a needle biopsy done which confirmed that the tumour consisted of active cancer cells. I had to go for a surgical biopsy to classify what kind of cells were they, so the proper treatment could be administered right away.
The cancer had then spread to my pancreas, kidneys and liver.
Afterwards, I went through six cycles of chemotherapy(R-CHOP) and self-studied for the rest of the year. I was lucky that I was fit enough to sit for my SPM examinations at the end of the year right after my last chemotherapy session scheduled for me was completed. Or else, I wouldn't be able to successfully graduate from secondary school. I had a lot of people telling me to just skip the examinations and relax for a bit, but my stubbornness got the better of me. I was determined enough then and thankfully, I did alright. At least I could fully focus on getting myself treated without worrying that I did not complete even my most basic education in Malaysia.
At the end of 2010, I went for a PET scan. My tumour did shrink, but it was still there.
When 2011 came, I went for radiotherapy this time. I had 25 fractions done.
I thought I was on the road to recovery at long last, but unfortunately…no.
A few days before my scheduled PET scan, I felt extreme soreness at the right side of my abdomen. It made me lose sleep at night, and my coughing fit was back. The oncologist in charge of my treatment for radiotherapy felt something near my right kidney. I went for a PET scan the very next day, and found out that my cancer had spread again. New tumours surrounded both my kidneys once more and my lower spine. Radiotherapy was crossed out from the possible ways of treatment, since the radiation will damage my kidneys, affecting their function tremendously.
I had three more cycles of chemotherapy(R-ICE) done. This proved effective for awhile, but after every session - the cancer would get aggressive and we went back to square one. Finally, it was decided that I was to undergo an autologous stem cell transplant. I had my stem cells harvested, and I went through a few days of high-dose chemotherapy before the transplant. I was hospitalised for a month. I had zero immunity, and blood infections which caused high fever haunted me. I made more trips back to the hospital to rid of the infections.
I am currently under quarantine and recuperating from the transplant; dealing with the side effects from both the transplant and my radiotherapy sessions - causing breathing problems, dizziness, fatigue, etc. The latter is the cause of a now weak heart.
I went for another 27 fractions of radiotherapy due to a tumour above my left kidney discovered by a PET scan in December 2011. My left kidney has lost its function.
Through another bout of coughing, I was advised to go for a chest X-ray and have an ultrasound done at the abdominal area. It is confirmed that my cancer relapsed for the third time. I am now under a new kind of medication.
***
So much had happened throughout me battling cancer.
Other than the physical challenges I have to go through, I also have to deal with my decreasing level of self-esteem and emotional health.
I do admit, I am a typical girl when it comes to me wanting to look pretty. You may call it vanity, but I say it's just me wanting to look presentable and good.
Imagine, I went bald twice; not once, but twice! Surprisingly, no tears came! (I later realised that it’s the process of waiting for my hair to grow again that’s truly challenging.)
This time, I hope I can truly make a full recovery and do my bit for the community. Also, hopefully my cancer journey as a teenager managed to inspire you and give you a more positive outlook on life. Quite a number of us assume that cancer only affects adults. On the contrary, I am a living example that that mindset is certainly untrue. It's not for me to tell you how to live your life, but you only live once, so treasure your life and your loved ones while you still can. Stop and smell the roses once in awhile, and you'll find that life is so fulfilling with just happiness and good health. A successful career, good grades - definite bonuses and great goals, but with life being so unpredictable; you'll never know what might happen next. Be content with what you already have, count your blessings and live life to the fullest without any regrets.
Believe me, I'm speaking from personal experience.
***
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22:54
Saturday 18 September 2010
Stayin' Alive - Bee Gees.
-Past and Present, ©KrnBrdMnNix.-Up till this very second typing this entry out, I'm lucky that I'm still alive and well.When I just found out I had cancer two months ago, a lot of people made the effort to contact me on Facebook and through calls and text messages to convey their well-wishes, support and encouragement for me. Close friends, friends, relatives, teachers, tutors - it doesn't matter who they are, I'm grateful and thankful for everything they've done for me. There was a period of time when I was a mini celebrity among these people. I got a lot of attention, whether I liked it or not. And then I found out something about a particular someone I personally know. Said someone really loves attention. Said someone will do nearly everything and anything that's not against the rules or the law to attract attention. Said someone is a very loud person. Nah, there's nothing wrong with all of those qualities about her, really. Said someone is quite likeable, and has many friends. Maybe it's just me, and I choose to be not that close to said someone. I don't really talk to said someone unless completely necessary. I rather mind my own business. I don't dislike her, but said someone's presence makes me feel very uncomfortable. Whenever I'm in situations that causes the spotlight to be on me, said someone will never fail to stare at me with 'the look'. I find it very difficult to explain 'the look' to my readers here, hence me calling the way said someone stares at me - 'the look'. It's as if said someone is very displeased that I'm gaining all this attention, even if it's just something momentary. At first, I thought it was just me. Maybe I was just being too sensitive, or I was thinking too much into it. After years of observation and confirmation from a close friend, I realised that all my thoughts and opinions about said someone were unfortunately true. And finally, here comes the worst part. Said someone actually loves attention so much, said someone wants to actually have cancer for all the attention said someone can get from it.
I was shocked. I was amazed. After the fact had fully sunk in, I couldn't help but feel disgusted at the same time as well. Well, said someone isn't that active in the online community. But here's a message for that said someone. You really have no idea what you're asking for. It's easy for healthy and cancer-free people to say that people who have cancer just have to undergo radiotherapy and chemotherapy. They're just words to some people.Going for radiotherapy or/and chemotherapy isn't as simple as one may think. I can't say much about radiotherapy, but I can tell you, chemotherapy literally poisons the body. Chemotherapy kills both cancerous and non-cancerous cells. Chemotherapy has many side-effects, and can affect an individual during or/and after treatment. Side-effects include hair loss, mood swings, stomachaches, headaches, blurred vision, and nausea. There's more. Seriously.You aren't encouraged to go out often because you have literally zero immunity. You have a high risk of falling sick easily. And if you do fall sick, the consequences are ten times worse than when an average person falls sick. It's because your immune system is nearly non-existent. You will not be capable of fighting viruses, germs and bacteria in/on your body like before.You'll have scans to go for. You'll have needles constantly being poked into you. You'll have to deal with a strict diet. You'll have your blood repeatedly taken to check on the number of white blood cells you have. You'll feel tired far too easily, and too often. Your usual lifestyle before having cancer has to undergo a 360 degree turn. Treatment and hospital stays don't come in cheap. Will it make you feel good knowing that your medical condition may be burdening your parents? Having your parents and family members adjusting their lifestyles to suit your needs? The worry and fear you have to put them through?Seriously, what in the world were you thinking to even harbour the thought to have cancer just for the sake of attention?When I found out I have cancer and knowing that there is this pretty large tumour situated right between my lungs and in front of my heart, pressing against my superior vena cava, it felt like I was standing on this thin line between life and death. If I were to find out about my condition much later, I can't even bear to think of what might happen. Problems that seemed so major before, actually seems trivial now, compared to everything I have been through. For the record, I went for a surgery before, was in a coma and even was sent to the ICU for that. I have to say, I'm proud to have survived all that. But of course, it would have been better if it wasn't necessary for me to endure procedures like that. The moral of the story? Do appreciate your life as who you are now. Appreciate every single moment of your life. There are bound to be both good and bad times. You can't expect life to go your way every time. Cheers! Labels: i'm grateful and blessed for.., life lessons, lymphoma and me, medical procedures, musings
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Living As An Inspiration
Shin.1966 - 2009. "She lives forever in the hearts of those who knew her,
and know of her."
I watched a documentary about her battle against cancer on Mediacorp's Channel 8 in 2008, back when I was still fifteen. I was really touched by her strong will and constant optimism despite her condition.
I found her blog and sent her an e-mail, expressing how wowed I am by her. All I wanted then was to tell her to keep up the good fight, and she was doing at good job at it; I learnt a lot about life in that one night through her documentary and blog entries than in my fifteen years of living life - complaining and whining when I was actually one lucky brat. I honestly didn't expect her to reply.
Guess what? She did.
I would like to share her reply to me with all of my readers. It also works as a reminder to me that I should keep up the good fight as well. I hope she doesn't mind, but I personally don't think she will; bless her good soul.
11th November 2008.
Leonie,
Thanks for your kind e-mail. It's taken me a while to respond because I only just saw it. I look at my Gmail account once every week or so. This Yahoo account is more reliable if you want to contact me.
I truly appreciate your words of praise and encouragement.
You say that you're a 15-year-old Malaysian student and that you're not good with words? You should know that your short note was more articulate, well-written, and intelligently expressed than most of the comments I've been getting - many of them, adult professionals.
I don't know what you plan on doing with your future, but with your gift of expression, I think you've got a bright future ahead of you, professionally. And more important, you seem to have a maturity and insight beyond your age. I'm betting that you go on do something great with your life - not in terms of money or fame, but something that will make a difference to the people and the community around you.
Thanks, and good luck to you.
Shin
*** Shin had really good foresight. Even if I personally don't think so, I guess my friends, acquaintances, and strangers who have got to know of my cancer journey will agree that I did manage to 'make a difference to the people and the community around me.'
Rest in peace, Shin. My only regret then was that I didn't get to reply your e-mail in time. Cancer took you away not long after, and this will always bug my conscience for being such a procrastinator.
But you have enlightened me in so many ways, and you continue to live in my heart as my inspiration to keep up the good fight.
Keep up the good fight. That should work well as a personal motto.
To my readers who want to know more of this amazing person, do visit her blog at http://shinscancerblog.blogspot.com and watch the documentary I watched by clicking on this link.
Thank you Shin. Thank you for making such a difference to my life.
©Photo of Shin belongs to her family members. Click hereto go back to reading.
Links
| Ming Wei | Riaane |
Clare's 1000 Paper Cranes Project Lymphoma Coalition Mesothelioma Cancer Alliance Blog Notes Left Behind The Cure Starts Now The Ulman Cancer Fund
|
22:54
Saturday 18 September 2010
Stayin' Alive - Bee Gees.
-Past and Present, ©KrnBrdMnNix.-Up till this very second typing this entry out, I'm lucky that I'm still alive and well.When I just found out I had cancer two months ago, a lot of people made the effort to contact me on Facebook and through calls and text messages to convey their well-wishes, support and encouragement for me. Close friends, friends, relatives, teachers, tutors - it doesn't matter who they are, I'm grateful and thankful for everything they've done for me. There was a period of time when I was a mini celebrity among these people. I got a lot of attention, whether I liked it or not. And then I found out something about a particular someone I personally know. Said someone really loves attention. Said someone will do nearly everything and anything that's not against the rules or the law to attract attention. Said someone is a very loud person. Nah, there's nothing wrong with all of those qualities about her, really. Said someone is quite likeable, and has many friends. Maybe it's just me, and I choose to be not that close to said someone. I don't really talk to said someone unless completely necessary. I rather mind my own business. I don't dislike her, but said someone's presence makes me feel very uncomfortable. Whenever I'm in situations that causes the spotlight to be on me, said someone will never fail to stare at me with 'the look'. I find it very difficult to explain 'the look' to my readers here, hence me calling the way said someone stares at me - 'the look'. It's as if said someone is very displeased that I'm gaining all this attention, even if it's just something momentary. At first, I thought it was just me. Maybe I was just being too sensitive, or I was thinking too much into it. After years of observation and confirmation from a close friend, I realised that all my thoughts and opinions about said someone were unfortunately true. And finally, here comes the worst part. Said someone actually loves attention so much, said someone wants to actually have cancer for all the attention said someone can get from it.
I was shocked. I was amazed. After the fact had fully sunk in, I couldn't help but feel disgusted at the same time as well. Well, said someone isn't that active in the online community. But here's a message for that said someone. You really have no idea what you're asking for. It's easy for healthy and cancer-free people to say that people who have cancer just have to undergo radiotherapy and chemotherapy. They're just words to some people.Going for radiotherapy or/and chemotherapy isn't as simple as one may think. I can't say much about radiotherapy, but I can tell you, chemotherapy literally poisons the body. Chemotherapy kills both cancerous and non-cancerous cells. Chemotherapy has many side-effects, and can affect an individual during or/and after treatment. Side-effects include hair loss, mood swings, stomachaches, headaches, blurred vision, and nausea. There's more. Seriously.You aren't encouraged to go out often because you have literally zero immunity. You have a high risk of falling sick easily. And if you do fall sick, the consequences are ten times worse than when an average person falls sick. It's because your immune system is nearly non-existent. You will not be capable of fighting viruses, germs and bacteria in/on your body like before.You'll have scans to go for. You'll have needles constantly being poked into you. You'll have to deal with a strict diet. You'll have your blood repeatedly taken to check on the number of white blood cells you have. You'll feel tired far too easily, and too often. Your usual lifestyle before having cancer has to undergo a 360 degree turn. Treatment and hospital stays don't come in cheap. Will it make you feel good knowing that your medical condition may be burdening your parents? Having your parents and family members adjusting their lifestyles to suit your needs? The worry and fear you have to put them through?Seriously, what in the world were you thinking to even harbour the thought to have cancer just for the sake of attention?When I found out I have cancer and knowing that there is this pretty large tumour situated right between my lungs and in front of my heart, pressing against my superior vena cava, it felt like I was standing on this thin line between life and death. If I were to find out about my condition much later, I can't even bear to think of what might happen. Problems that seemed so major before, actually seems trivial now, compared to everything I have been through. For the record, I went for a surgery before, was in a coma and even was sent to the ICU for that. I have to say, I'm proud to have survived all that. But of course, it would have been better if it wasn't necessary for me to endure procedures like that. The moral of the story? Do appreciate your life as who you are now. Appreciate every single moment of your life. There are bound to be both good and bad times. You can't expect life to go your way every time. Cheers! Labels: i'm grateful and blessed for.., life lessons, lymphoma and me, medical procedures, musings
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