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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I am not exaggerating, but my parents are draining their savings empty and spent pretty much every dollar, cent and dime just to fund for my treatments since July 2010.

It doesn't help that the current treatment I'm undergoing now, which is the stem cell transplant - is the most costly out of all of the medical procedures I've been through.

My parents are aware that I actually am desperate to start studying in college. So they still refuse to touch my college fund, unless it is the last final resort.

Friends, old and new...

This is a sincere plea for help from me,
on behalf of my immediate family members -
my parents and my elder brother.
We are really low on cash. I hate to have to ask for help, but seeing how tough it is for both my parents to pay for all those costly medical bills and my brother for being considerate to consider our spendings and tries to save as much as he can so he can relieve my parents of some burden. He's still studying in university, and the last thing I want to see that happens is my brother dropping out of his course just to help support me. I'm already robbed of my chance of an education, so why rob my brother of his?

At least, if I ever were to unfortunately die - my brother will have enough qualifications to find a better job and support my parents in the future.

At the very least, this is what everyone in my family deserves for taking such great care of me throughout my course of treatment. In fact, since I was born to be exact!

I was given a chance to live, yet it is not for me to choose how long I can live this life as my current identity. I have to say, I'm thankful for having the chance to be born as Leonie. Someone who isn't your typical ordinary person, yet still uniquely me - learning something new everyday and meeting new people; creating new experiences and memories for me.

I truly do not know how much longer my cancer journey is going to take. I don't know how many types of treatment I still have to face after this. I still have no idea how much longer I'm going to live.

Please spread the word around for me. If there is anything you need to know such as my bank account details, approximate cost of treatment, etc., feel free to inbox me through Facebook or leave me a comment on this blog. If you prefer to be kept anonymous, I will not publish your comment - but please leave me your email, contact number, Facebook profile or anything that will make it easier and convenient to discuss everything out.

You have my utmost, sincerest thanks.

Thank you for taking the time to read this entry, and thank you for spreading the word around.

I really hope to hear some good news soon. (':

Labels: general, i'm grateful and blessed for.., lymphoma and me, medical procedures, musings

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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'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.

Labels: lymphoma and me, medical procedures, musings

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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.

I am not exaggerating, but my parents are draining their savings empty and spent pretty much every dollar, cent and dime just to fund for my treatments since July 2010.

It doesn't help that the current treatment I'm undergoing now, which is the stem cell transplant - is the most costly out of all of the medical procedures I've been through.

My parents are aware that I actually am desperate to start studying in college. So they still refuse to touch my college fund, unless it is the last final resort.

Friends, old and new...

This is a sincere plea for help from me,
on behalf of my immediate family members -
my parents and my elder brother.
We are really low on cash. I hate to have to ask for help, but seeing how tough it is for both my parents to pay for all those costly medical bills and my brother for being considerate to consider our spendings and tries to save as much as he can so he can relieve my parents of some burden. He's still studying in university, and the last thing I want to see that happens is my brother dropping out of his course just to help support me. I'm already robbed of my chance of an education, so why rob my brother of his?

At least, if I ever were to unfortunately die - my brother will have enough qualifications to find a better job and support my parents in the future.

At the very least, this is what everyone in my family deserves for taking such great care of me throughout my course of treatment. In fact, since I was born to be exact!

I was given a chance to live, yet it is not for me to choose how long I can live this life as my current identity. I have to say, I'm thankful for having the chance to be born as Leonie. Someone who isn't your typical ordinary person, yet still uniquely me - learning something new everyday and meeting new people; creating new experiences and memories for me.

I truly do not know how much longer my cancer journey is going to take. I don't know how many types of treatment I still have to face after this. I still have no idea how much longer I'm going to live.

Please spread the word around for me. If there is anything you need to know such as my bank account details, approximate cost of treatment, etc., feel free to inbox me through Facebook or leave me a comment on this blog. If you prefer to be kept anonymous, I will not publish your comment - but please leave me your email, contact number, Facebook profile or anything that will make it easier and convenient to discuss everything out.

You have my utmost, sincerest thanks.

Thank you for taking the time to read this entry, and thank you for spreading the word around.

I really hope to hear some good news soon. (':

Labels: general, i'm grateful and blessed for.., lymphoma and me, medical procedures, musings

177 comment(s):

Post a Comment

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'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.

Labels: lymphoma and me, medical procedures, musings

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