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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19:51
Tuesday, 31 January 2012
A Different Kind of New Year.
Hello dear readers! It's already going to be February very soon. Tomorrow, to be exact. I'm going to make this a quick one, but it's definitely going to be slightly more detailed than my previous entry. Recently, I have been going for radiotherapy sessions (again). The usual staff are still there, and they still remember me. Of course, no one is happy that I have to go for more fractions. It does make things easier for me; the familiar surroundings, En. Owl the joker and Kak N the sisterly figure (real names shall not be revealed here, since they are medical staff) and knowing the procedures without feeling all awkward. I'm not let off from the side effects, though. Since my PET scan results from last December showed that I still have this one tumour (whether it's a relapse of my cancer or my transplant unfortunately did not work out as well as everyone thought, it remains unknown. Still, I strongly believe it's the former. There are the results from various blood tests to support my opinion, even if I'm not a certified doctor or MO of any kind) at my left kidney, I was advised to go for radiotherapy once more. According to my doctor in KL, chemotherapy won't work for me anymore; I was administered the strongest dosage prior to my stem cell transplant, and the cancer cells in my body showed resistance, apparently. Also, there's no point in damaging my healthy cells with more chemotherapy, since it isn't going to work. So, it's daily trips to the hospital again. All this at the expense of something - I'll lose the function of my left kidney. The kidney is quite a fragile organ, it seems. It cannot receive more than a certain amount of radiation, or else it faces major damage. In my case, it's either sacrificing one kidney, or sacrificing my life. With the choices given, it's not that hard to decide, really. I'm getting tired. Tired of all the treatments, tired of burdening my loved ones, tired of worrying the people who care for me. It hurts to see their worn-out faces too. Will it be too much to ask for cancer to go away already and for me to get through this ordeal? With the experience I've gained from fighting cancer, I certainly could do inspiring more people with my story. Or helping those in need now. I'm not too used being the one who needs help, to be honest. It kind of makes me feel extremely vulnerable, somehow. And I certainly don't like feeling that way. Oh, and I don't need anybody to tell me that it's the journey that matters, and not the destination. You guys have no idea how aware I am of that. Till another longer post, I hope! Happy Chinese New Year to all who celebrates it! (Technically, it lasts for 15 days, so I'm not late!) Cheers! Labels: i'm grateful and blessed for.., lymphoma and me, medical procedures, musings
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13:41
Monday, 2 January 2012
Starting Afresh.
Hello readers. I feel obliged to apologise to everyone because I haven't been updating, but I think I'm not going to. The pleasing disease needs to be cured. Or cancer won't. All that everyone needs to know for now: Cancer is back in my life once more.I'll give the details later. For now, I'll just like to spend some time with my family. By the way, hope this new layout is well-received! Cheers. Labels: general, lymphoma and me
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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
|
19:51
Tuesday, 31 January 2012
A Different Kind of New Year.
Hello dear readers! It's already going to be February very soon. Tomorrow, to be exact. I'm going to make this a quick one, but it's definitely going to be slightly more detailed than my previous entry. Recently, I have been going for radiotherapy sessions (again). The usual staff are still there, and they still remember me. Of course, no one is happy that I have to go for more fractions. It does make things easier for me; the familiar surroundings, En. Owl the joker and Kak N the sisterly figure (real names shall not be revealed here, since they are medical staff) and knowing the procedures without feeling all awkward. I'm not let off from the side effects, though. Since my PET scan results from last December showed that I still have this one tumour (whether it's a relapse of my cancer or my transplant unfortunately did not work out as well as everyone thought, it remains unknown. Still, I strongly believe it's the former. There are the results from various blood tests to support my opinion, even if I'm not a certified doctor or MO of any kind) at my left kidney, I was advised to go for radiotherapy once more. According to my doctor in KL, chemotherapy won't work for me anymore; I was administered the strongest dosage prior to my stem cell transplant, and the cancer cells in my body showed resistance, apparently. Also, there's no point in damaging my healthy cells with more chemotherapy, since it isn't going to work. So, it's daily trips to the hospital again. All this at the expense of something - I'll lose the function of my left kidney. The kidney is quite a fragile organ, it seems. It cannot receive more than a certain amount of radiation, or else it faces major damage. In my case, it's either sacrificing one kidney, or sacrificing my life. With the choices given, it's not that hard to decide, really. I'm getting tired. Tired of all the treatments, tired of burdening my loved ones, tired of worrying the people who care for me. It hurts to see their worn-out faces too. Will it be too much to ask for cancer to go away already and for me to get through this ordeal? With the experience I've gained from fighting cancer, I certainly could do inspiring more people with my story. Or helping those in need now. I'm not too used being the one who needs help, to be honest. It kind of makes me feel extremely vulnerable, somehow. And I certainly don't like feeling that way. Oh, and I don't need anybody to tell me that it's the journey that matters, and not the destination. You guys have no idea how aware I am of that. Till another longer post, I hope! Happy Chinese New Year to all who celebrates it! (Technically, it lasts for 15 days, so I'm not late!) Cheers! Labels: i'm grateful and blessed for.., lymphoma and me, medical procedures, musings
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13:41
Monday, 2 January 2012
Starting Afresh.
Hello readers. I feel obliged to apologise to everyone because I haven't been updating, but I think I'm not going to. The pleasing disease needs to be cured. Or cancer won't. All that everyone needs to know for now: Cancer is back in my life once more.I'll give the details later. For now, I'll just like to spend some time with my family. By the way, hope this new layout is well-received! Cheers. Labels: general, lymphoma and me
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