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.
***
Click hereto go back to reading!
16:41
Thursday, 24 March 2011
what ifs.
If you got redirected here through Facebook or Twitter and clicked on the link just to know my results - I'm sorry to disappoint you, but it's not going to happen. But you have to admit, it got your attention, didn't it? ;) Anyway, to those of you who do know what my results are - please keep it to yourself. You'll be doing me a major favour, and I would really appreciate that. To sum it all up: - I passed SPM 2010.
- I didn't score straight A's.
- I did better than I expected.
- I did well for English. I didn't let En. Ismail down.
- My parents and brother are happy with my results.
- I'm grateful because I managed to take all ten subjects for SPM and sat for every paper despite my condition. (Some people suggested to my parents that I should drop all the electives and just sit for the core subjects. I told my parents that I didn't want to waste the money they spent on me attending tuition classes and the time I spent learning all the electives before getting cancer.)
A few individuals told me about my schoolmates' results. Generally, they were telling me that I did much better than them. My schoolmates continued schooling and attended tuition throughout the year, while I went for chemotherapy sessions, hospital check-ups, blood tests and biopsies. I was forced to stay at home. The said individuals told me that I got pretty excellent results through my own effort. I could have scored straight A's if I was cancer-free and led life normally. I felt bad listening to all of their comments. I felt that they have to bring someone down to make me feel better about myself. It's nearly like the basis of bullying. I felt like a bully who bullied others to comfort and comfort my own low self-esteem. This is one of the reasons why I don't want to publicise my results online. I don't want people who got worse results than me to feel stupid or bad. I don't want to be the cause of further distress and upset. I don't want their thoughts to be contaminated with notions like this or similar to this: "She sat for SPM, she had cancer, and she did so well compared to me! A normal, healthy person! I'm really useless and stupid."
Honestly, no matter how well or how badly we did for SPM - the results cannot be changed. Getting good results doesn't mean you're going to secure a pass for the future. Getting bad results doesn't mean that your future is ruined. Truthfully, if I didn't get diagnosed with cancer - I wouldn't be saying all of this. I might think it's the end of the world if I got anything other than a A for any of my subjects. But I was diagnosed with cancer. And I went through so much. I fought hard just to stay alive. I aspire to make a great change to this world. I want to spend more time with my family and friends. I want to contribute back to society. If I lost my life to cancer, I wouldn't even get the chance to sit for any exam. I wouldn't even get a chance to score badly for anything.And I just want my peers who feel that their SPM results are horrible and are reading this entry - you got the most priceless thing in the world that I don't have. Something that cannot ever be bought with money. Your health.
The results that will certainly determine my life isn't my SPM results. It's the results of my PET scan next month. And that, is all what matters to me now. Labels: i'm grateful and blessed for.., musings
5 comment(s):
Post a Comment
14:06
Thursday, 17 March 2011
impatience.
This is me promising my readers that this entry will not be a depressing one. (: So, it's already mid-March. Till today, I have done a couple of blood tests in Malacca. The results weren't very optimistic, but according to the doctor in Malacca - he said it was quite normal, as the increase of certain cells in my body were due to the side effects of radiotherapy. He said he will keep on monitoring my condition, and I'll be making another trip to Malacca next month for another blood test. This blood test will most probably be my last before my PET scan that is scheduled to be done on the 27th of April. Two weeks ago, I caught the flu bug. Obviously, I fell sick. Naturally, my parents got very worried. I admit, I was equally as worried and afraid. Getting sick means that the size of the tumour can increase due to viral infection. Who knows? The cancer cells may spread to other parts of my body, like before, when it affected so many of my major internal organs. It took hours of chemotherapy to rid of all that. Mind you, one session of chemotherapy for me can take around eight to 10 hours. I went for six chemotherapy sessions, and trust me, it wasn't easy. Not one bit. Thankfully, I think I have recovered from the flu. I still have this minor sore throat and cough which is really bugging me a lot. Hello sore throat and cough, I have enough to deal with already with this stupid tumour inside of me. I don't need you to plague my already unhealthy self any further. Please go away and stop haunting me. Hello cancer, can you please go away and disappear from my life already? You're causing me to be a burden to my family, and it makes me severely uncomfortable and unhappy to be like that. I want to be of use, and I hate feeling useless. I just want my life back, if you don't mind. Well, I know I mind. Sincerely, Leonie. Labels: lymphoma and me, medical procedures, musings
0 comment(s):
Post a Comment
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
|
16:41
Thursday, 24 March 2011
what ifs.
If you got redirected here through Facebook or Twitter and clicked on the link just to know my results - I'm sorry to disappoint you, but it's not going to happen. But you have to admit, it got your attention, didn't it? ;) Anyway, to those of you who do know what my results are - please keep it to yourself. You'll be doing me a major favour, and I would really appreciate that. To sum it all up: - I passed SPM 2010.
- I didn't score straight A's.
- I did better than I expected.
- I did well for English. I didn't let En. Ismail down.
- My parents and brother are happy with my results.
- I'm grateful because I managed to take all ten subjects for SPM and sat for every paper despite my condition. (Some people suggested to my parents that I should drop all the electives and just sit for the core subjects. I told my parents that I didn't want to waste the money they spent on me attending tuition classes and the time I spent learning all the electives before getting cancer.)
A few individuals told me about my schoolmates' results. Generally, they were telling me that I did much better than them. My schoolmates continued schooling and attended tuition throughout the year, while I went for chemotherapy sessions, hospital check-ups, blood tests and biopsies. I was forced to stay at home. The said individuals told me that I got pretty excellent results through my own effort. I could have scored straight A's if I was cancer-free and led life normally. I felt bad listening to all of their comments. I felt that they have to bring someone down to make me feel better about myself. It's nearly like the basis of bullying. I felt like a bully who bullied others to comfort and comfort my own low self-esteem. This is one of the reasons why I don't want to publicise my results online. I don't want people who got worse results than me to feel stupid or bad. I don't want to be the cause of further distress and upset. I don't want their thoughts to be contaminated with notions like this or similar to this: "She sat for SPM, she had cancer, and she did so well compared to me! A normal, healthy person! I'm really useless and stupid."
Honestly, no matter how well or how badly we did for SPM - the results cannot be changed. Getting good results doesn't mean you're going to secure a pass for the future. Getting bad results doesn't mean that your future is ruined. Truthfully, if I didn't get diagnosed with cancer - I wouldn't be saying all of this. I might think it's the end of the world if I got anything other than a A for any of my subjects. But I was diagnosed with cancer. And I went through so much. I fought hard just to stay alive. I aspire to make a great change to this world. I want to spend more time with my family and friends. I want to contribute back to society. If I lost my life to cancer, I wouldn't even get the chance to sit for any exam. I wouldn't even get a chance to score badly for anything.And I just want my peers who feel that their SPM results are horrible and are reading this entry - you got the most priceless thing in the world that I don't have. Something that cannot ever be bought with money. Your health.
The results that will certainly determine my life isn't my SPM results. It's the results of my PET scan next month. And that, is all what matters to me now. Labels: i'm grateful and blessed for.., musings
5 comment(s):
Post a Comment
14:06
Thursday, 17 March 2011
impatience.
This is me promising my readers that this entry will not be a depressing one. (: So, it's already mid-March. Till today, I have done a couple of blood tests in Malacca. The results weren't very optimistic, but according to the doctor in Malacca - he said it was quite normal, as the increase of certain cells in my body were due to the side effects of radiotherapy. He said he will keep on monitoring my condition, and I'll be making another trip to Malacca next month for another blood test. This blood test will most probably be my last before my PET scan that is scheduled to be done on the 27th of April. Two weeks ago, I caught the flu bug. Obviously, I fell sick. Naturally, my parents got very worried. I admit, I was equally as worried and afraid. Getting sick means that the size of the tumour can increase due to viral infection. Who knows? The cancer cells may spread to other parts of my body, like before, when it affected so many of my major internal organs. It took hours of chemotherapy to rid of all that. Mind you, one session of chemotherapy for me can take around eight to 10 hours. I went for six chemotherapy sessions, and trust me, it wasn't easy. Not one bit. Thankfully, I think I have recovered from the flu. I still have this minor sore throat and cough which is really bugging me a lot. Hello sore throat and cough, I have enough to deal with already with this stupid tumour inside of me. I don't need you to plague my already unhealthy self any further. Please go away and stop haunting me. Hello cancer, can you please go away and disappear from my life already? You're causing me to be a burden to my family, and it makes me severely uncomfortable and unhappy to be like that. I want to be of use, and I hate feeling useless. I just want my life back, if you don't mind. Well, I know I mind. Sincerely, Leonie. Labels: lymphoma and me, medical procedures, musings
0 comment(s):
Post a Comment
|