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 have been trying my best to keep myself fairly busy, without overtiring myself. Sometimes, I still have this mentality that I am still a normal, healthy person and I can afford to exert myself occasionally. Unfortunately, I will only realise the consequences after I unconsciously physically tire myself out.

Anyway, I feel slightly more alert nowadays. I'm assuming it should be due to the steroids I have been prescribed by my doctor. Currently on more oral medication to hopefully stabilize my condition after the completion of my stem cell transplant.

It’s been tough, that I won’t deny.

It has been ages since I gave a proper update, so in this entry I think I'm going to clarify some matters that were of concern since the start of my transplant till now.

Bone marrow transplant? Stem cell transplant? Huh?
A lot of you are confused regarding this matter. I can understand, because if I wasn't diagnosed with cancer - I wouldn't have known any better either.

When I first started treatment in KL, my doctor told me that I have to undergo a bone marrow transplant. Therefore, that's exactly what I wrote on this blog for everyone to know. I have to go for a bone marrow transplant.

Afterwards, I started using the phrase 'stem cell transplant' in my blog. People starting asking me,

"Leonie, are you going through two different kinds of treatment now?"

"What happened to the plan of you going for a bone marrow transplant?"

"What's a stem cell transplant?"

"Leonie, you have to go through this major operation for your bone marrow transplant right?
The list of such questions goes on and on.

Okay, I'll do my best to answer these questions without adding any inaccurate information by complete accident. But you have been warned, I'm only explaining with my current level of understanding and knowledge. I'm not the doctor nor the expert here, so if I happen to get any facts wrong - don't sue me.

Apparently, bone marrow transplant = stem cell transplant. The common idea of having to undergo a bone marrow transplant in the minds of the general public is the patient and the donor are required to be given general anaesthesia(GA), i.e. both patients are unconscious during the operation. A part of the bone marrow is extracted from the donor, and that part is given to the patient - all these happen during the surgery.

With the advancement in medical science, we now have this procedure called the stem cell transplant. It works the same way as the bone marrow transplant, but the procedures are different.

The treatment I went through required me to have a CVC line inserted at my neck(this was a minor operation by the way, only local anaesthesia(LA) was administed at my neck). This functions to extract my blood from my body and through this medical equipment – separates the different kinds of cells in your blood. After that, the stem cells are preserved till the patient's transplant. High dose chemotherapy is given, and the stem cells returned to the patient.

I wasn't knocked out in any way at all.

This treatment I went through is also known as autologous stem cell transplantation.

Life during/after the transplant.
It didn’t make any difference being discharged from the hospital after I was done with my transplant. (I was there for approximately three weeks for my transplant.) I was re-admitted again and again due to quite serious cases of blood infection that caused me to have high fever that nearly hit 40°C. You do the math. All I can tell you is that my head feels really sore after so many bouts of high fever; my brain’s been getting stressed out a lot.

It’s definitely not easy for my parents either, having to rush me all the way to the hospital in KL. Mind you, that’s five hours of driving for my dad and exhaustion, stress and unhealthy meals for both my parents. Not forgetting the costs of staying in the hospital to get treatment. Worrying my brother as well, knowing that he lives in another part of KL and despite his busy schedule in university and all – wants to come over and keep me company.

Did I mention that I have very supportive and awesome family members? Yeah, I think I mentioned that before.

I really hope that’s the end of all that.

While the cells are readjusting themselves in the body post-transplant, patients will go through a variety of side effects. Some of the unfortunate events I went through are:

1. Vomiting blood. Twice. This caused some commotion for the nurses and my doctor. I then found out that the news of me vomitting blood had spread to nearly all of the staff in the entire bulding. Go figure.
   
   
2. More bouts of high fever, causing me to feel extremely cold and shiver a lot. I remember needing to have three to four layers of blankets in attempt to help me feel more comfortable, plus I wore mittens, socks and a wool hat. A few nurses said that I looked like I was all geared up for winter, ready for a skiing trip. I'll leave it to your imagination.
   
   
3. More vomiting...
   
   
4. A very bad sore throat and tongue. Swallowing was really a pain. It's very similar to what I had to go through before, and you can read about it here. Felt more awful though throughout the treatment process.

All these, went on for about two months or so. I didn't want to worry anybody on purpose, you see. You try going through all the shit I had to go through, and see whether you're fit good enough to go online and respond to people, even if you've really wanted to.

This is just a scam! They are just con artists!
As a result, my family and I were accused of cheating people of their money, and running off after getting their cash. Some said that my parents were using me or taking advantage of me to con people of their money. Others said that I edited my photo to look bald, and convince people that I have cancer.


I wish some people would just have some common sense for a bit!

Cancer isn't funny at all. Cancer is something so serious, it is capable of taking your loved ones' lives away.

Who bloody wants to end up with cancer anyway? Definitely no one, of course!

Cancer is not a joking matter. Seriously, to all of you who have thought this way - my family and I are seriously hurt by your remarks. Honestly, I really want sincere apologies from each and every one of you idiots!

But as of now, all I want to do is to fully recover. Cause my parents, my friends, my loved ones, or anybody that knows me - less worry, less sadness.

I would like to use vulgarities in the entry to release my anger for the people as I've described earlier, but I rather not. At least, not for now.

A note to these people: I have no reason to cheat any of you. If you choose not to believe me, and still think that I faked cancer(PFFFFT!) - that's all up to you. I didn't do anything wrong, and I don't see any need to explain myself to convince you. Stay in that little box of yours, and rot there for all I care. I'm too tired, and I rather save my energy to recuperate properly. So there!

All this drama makes me so grateful and glad that there are still good Samaritans out there who are willing to help me out. (I'm going to leave this to another entry, good people deserve a nice, long post about them all to themselves!)

***I'm going to stop here for the moment. If I keep this entry too long, nobody would bother to read it.

I FIND IT EXCEPTIONALLY ANNOYING THAT PEOPLE STILL ASK ME QUESTIONS REPEATEDLY WHEN I HAVE ALREADY ANSWERED THEM IN MY BLOG.

FIRST, SOME OF YOU SAY THAT I'M CAUSING PEOPLE TO WORRY ABOUT MY CONDITION BY NOT UDPATING.

SO I UPDATED.

BUT THEN, THESE SAME PEOPLE JUST HAVE TO ASK ME THE SAME FREAKING QUESTIONS THAT I HAVE JUST ANSWERED ON MY BLOG!

TELL ME, WHAT IS THE POINT OF ME BLOGGING IF YOU AREN'T EVEN GOING TO READ IT? YET, YOU ALL ARE BEING SUCH HYPOCRITES FOR PESTERING ME TO UPDATE, UPDATE, UPDATE!

I am trying my best to rest more, to recover quickly from cancer. And this is what I get in return.

Oh gosh, is it that hard to get a little bit of understanding from people like them?

Again, I am grateful to those who do understand. Thank you, you and you!

I realised that I've just blogged these pent-up emotions I have been keeping to myself since the start of my transplant.

I do feel a little bit better, but there are still unsettled issues. I'll blog about them another time.

Meanwhile, I hope this entry is satisfying to everyone - both the good, and the bad.

Cheers!

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

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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 have been trying my best to keep myself fairly busy, without overtiring myself. Sometimes, I still have this mentality that I am still a normal, healthy person and I can afford to exert myself occasionally. Unfortunately, I will only realise the consequences after I unconsciously physically tire myself out.

Anyway, I feel slightly more alert nowadays. I'm assuming it should be due to the steroids I have been prescribed by my doctor. Currently on more oral medication to hopefully stabilize my condition after the completion of my stem cell transplant.

It’s been tough, that I won’t deny.

It has been ages since I gave a proper update, so in this entry I think I'm going to clarify some matters that were of concern since the start of my transplant till now.

Bone marrow transplant? Stem cell transplant? Huh?
A lot of you are confused regarding this matter. I can understand, because if I wasn't diagnosed with cancer - I wouldn't have known any better either.

When I first started treatment in KL, my doctor told me that I have to undergo a bone marrow transplant. Therefore, that's exactly what I wrote on this blog for everyone to know. I have to go for a bone marrow transplant.

Afterwards, I started using the phrase 'stem cell transplant' in my blog. People starting asking me,

"Leonie, are you going through two different kinds of treatment now?"

"What happened to the plan of you going for a bone marrow transplant?"

"What's a stem cell transplant?"

"Leonie, you have to go through this major operation for your bone marrow transplant right?
The list of such questions goes on and on.

Okay, I'll do my best to answer these questions without adding any inaccurate information by complete accident. But you have been warned, I'm only explaining with my current level of understanding and knowledge. I'm not the doctor nor the expert here, so if I happen to get any facts wrong - don't sue me.

Apparently, bone marrow transplant = stem cell transplant. The common idea of having to undergo a bone marrow transplant in the minds of the general public is the patient and the donor are required to be given general anaesthesia(GA), i.e. both patients are unconscious during the operation. A part of the bone marrow is extracted from the donor, and that part is given to the patient - all these happen during the surgery.

With the advancement in medical science, we now have this procedure called the stem cell transplant. It works the same way as the bone marrow transplant, but the procedures are different.

The treatment I went through required me to have a CVC line inserted at my neck(this was a minor operation by the way, only local anaesthesia(LA) was administed at my neck). This functions to extract my blood from my body and through this medical equipment – separates the different kinds of cells in your blood. After that, the stem cells are preserved till the patient's transplant. High dose chemotherapy is given, and the stem cells returned to the patient.

I wasn't knocked out in any way at all.

This treatment I went through is also known as autologous stem cell transplantation.

Life during/after the transplant.
It didn’t make any difference being discharged from the hospital after I was done with my transplant. (I was there for approximately three weeks for my transplant.) I was re-admitted again and again due to quite serious cases of blood infection that caused me to have high fever that nearly hit 40°C. You do the math. All I can tell you is that my head feels really sore after so many bouts of high fever; my brain’s been getting stressed out a lot.

It’s definitely not easy for my parents either, having to rush me all the way to the hospital in KL. Mind you, that’s five hours of driving for my dad and exhaustion, stress and unhealthy meals for both my parents. Not forgetting the costs of staying in the hospital to get treatment. Worrying my brother as well, knowing that he lives in another part of KL and despite his busy schedule in university and all – wants to come over and keep me company.

Did I mention that I have very supportive and awesome family members? Yeah, I think I mentioned that before.

I really hope that’s the end of all that.

While the cells are readjusting themselves in the body post-transplant, patients will go through a variety of side effects. Some of the unfortunate events I went through are:

1. Vomiting blood. Twice. This caused some commotion for the nurses and my doctor. I then found out that the news of me vomitting blood had spread to nearly all of the staff in the entire bulding. Go figure.
   
   
2. More bouts of high fever, causing me to feel extremely cold and shiver a lot. I remember needing to have three to four layers of blankets in attempt to help me feel more comfortable, plus I wore mittens, socks and a wool hat. A few nurses said that I looked like I was all geared up for winter, ready for a skiing trip. I'll leave it to your imagination.
   
   
3. More vomiting...
   
   
4. A very bad sore throat and tongue. Swallowing was really a pain. It's very similar to what I had to go through before, and you can read about it here. Felt more awful though throughout the treatment process.

All these, went on for about two months or so. I didn't want to worry anybody on purpose, you see. You try going through all the shit I had to go through, and see whether you're fit good enough to go online and respond to people, even if you've really wanted to.

This is just a scam! They are just con artists!
As a result, my family and I were accused of cheating people of their money, and running off after getting their cash. Some said that my parents were using me or taking advantage of me to con people of their money. Others said that I edited my photo to look bald, and convince people that I have cancer.


I wish some people would just have some common sense for a bit!

Cancer isn't funny at all. Cancer is something so serious, it is capable of taking your loved ones' lives away.

Who bloody wants to end up with cancer anyway? Definitely no one, of course!

Cancer is not a joking matter. Seriously, to all of you who have thought this way - my family and I are seriously hurt by your remarks. Honestly, I really want sincere apologies from each and every one of you idiots!

But as of now, all I want to do is to fully recover. Cause my parents, my friends, my loved ones, or anybody that knows me - less worry, less sadness.

I would like to use vulgarities in the entry to release my anger for the people as I've described earlier, but I rather not. At least, not for now.

A note to these people: I have no reason to cheat any of you. If you choose not to believe me, and still think that I faked cancer(PFFFFT!) - that's all up to you. I didn't do anything wrong, and I don't see any need to explain myself to convince you. Stay in that little box of yours, and rot there for all I care. I'm too tired, and I rather save my energy to recuperate properly. So there!

All this drama makes me so grateful and glad that there are still good Samaritans out there who are willing to help me out. (I'm going to leave this to another entry, good people deserve a nice, long post about them all to themselves!)

***I'm going to stop here for the moment. If I keep this entry too long, nobody would bother to read it.

I FIND IT EXCEPTIONALLY ANNOYING THAT PEOPLE STILL ASK ME QUESTIONS REPEATEDLY WHEN I HAVE ALREADY ANSWERED THEM IN MY BLOG.

FIRST, SOME OF YOU SAY THAT I'M CAUSING PEOPLE TO WORRY ABOUT MY CONDITION BY NOT UDPATING.

SO I UPDATED.

BUT THEN, THESE SAME PEOPLE JUST HAVE TO ASK ME THE SAME FREAKING QUESTIONS THAT I HAVE JUST ANSWERED ON MY BLOG!

TELL ME, WHAT IS THE POINT OF ME BLOGGING IF YOU AREN'T EVEN GOING TO READ IT? YET, YOU ALL ARE BEING SUCH HYPOCRITES FOR PESTERING ME TO UPDATE, UPDATE, UPDATE!

I am trying my best to rest more, to recover quickly from cancer. And this is what I get in return.

Oh gosh, is it that hard to get a little bit of understanding from people like them?

Again, I am grateful to those who do understand. Thank you, you and you!

I realised that I've just blogged these pent-up emotions I have been keeping to myself since the start of my transplant.

I do feel a little bit better, but there are still unsettled issues. I'll blog about them another time.

Meanwhile, I hope this entry is satisfying to everyone - both the good, and the bad.

Cheers!

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

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