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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Edits are going on in this cancer blog of mine. I have added another page, and it's mainly about my treatment course since the start of my cancer journey. I hope I didn't miss any important details, but it's certainly full of just that - details. To those of you who are new here, or would like to know of what I have been going through - more precise information is available here.

Cheers!

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It's not easy moderating so many comments. I wonder how famous bloggers handle their fans/haters' comments.

Hopefully, I didn't accidentally publish a comment that was not meant to be published; the people who wanted to be kept anonymous or posted their contact details.

There were one or two comments that had contact numbers. Even though it wasn't mentioned, but I didn't publish those either. I don't think they will appreciate prank calls or having their contact numbers exposed. From personal experience, I know I don't.

I think I will dedicate an entire blog entry to replying these comments.

Meanwhile, I will do my best to maintain this blogging spirit and update as often as possible about exactly what I had been through to those of you who frequently ask.

Also, I added a new page for this blog. If you look beneath my blog banner and next to the word 'Home', I dedicated my 'Inspiration' page to this amazing individual. Personally, I really hope that any one of you readers will take some time off to read about her. She's more amazing and tougher than me, and ever will be.

Cheers!

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Today marks the 100th day since my stem cell transplant.

Even though the side effects from treatment are still causing me discomforts, I guess it'll cause less worry among my friends, readers and anyone who knows me well with an update.

I'll try and keep this short and concise. (It'll be hard though, I have a lot to say; do bear with me.)

1. Words will never be enough to describe how thankful I am for everyone's generous contributions. (I'll appreciate it a lot if some of you do not use the word 'donations'. It makes me sound like I'm a charity case. Or am I, without me realising it...?) They have definitely helped. I just hope that I can recover soon and have no more relapses so I don't have to burden my parents more; them spending so much money on me when we're not from a well-to-do family. I will always feel guilty for that.
   
   
2. I will definitely thank each and every single person that had contributed personally to those who had informed me of their details or/and their friends' and family members' details. It will take a lot of time though, please be and stay understanding of my condition. One of the main reasons why I haven't been updating is because I get very tired easily nowadays: it's a common side effect from the transplant.
   
   
3. I am recuperating from my stem cell transplant, but I sincerely have no idea whether I'm on the road to recovery or not. The point is:
   
   Recuperating ≠ Recovering.
   Frankly, who doesn't hope for the latter? I wish I have X-ray vision to see whether there is any growth of anything abnormal or not, so I not only cannot give an answer to every concerned individual who asks, but also to my family and myself. It is worrying whenever I feel a pain here or there, I'll get paranoid about it and worry that my cancer may be back to haunt me. You'll be doing me a huge favour by not asking, because I feel guilty that I cannot produce an answer for you. Many thanks in advance.
   
   
4. I am under quarantine. Strictly no visitors allowed, I'm sorry to say. I do miss my friends a lot and it upsets me whenever I have to reject any of my friends who wants to visit and keep me company(and sane, as well). I'm sorry, and truly am.
   
   
5. Every comment and tag, I had read. I really appreciate them so much; all this support is a good reason for me to stay positive and strong whenever I get discouraged about my condition. I really would like to respond to everyone, but I find it not possible at the moment. But sincerely, thank you, you and you.
   
   
6. As much as they are filled with good intentions, please think before you ask me any questions. Some of them are not only offensive, but also very hurtful. I can't expect everyone to understand, because all of you are healthy people while I'm the one stuck with cancer. From a cancer patient's point of view, I believe that generally, only cancer patients(in my case, blood cancer patients) can really understand how I feel and what I'm coping with; the physical discomforts, the emotional breakdowns, the limitations, the challenge to maintain positive, happy and content just to see the light of another day.
   
   
7. Emotions-wise, I have been feeling like a wreck very often. The smallest of matters can trigger me to cry and actually sob loudly(I don't know what my neighbours will think of me, but what the heck). It's not normal to me; I was very good at holding back my tears during my pre-cancer days. Then, if I ever was caught crying in public(which was super rare) - you'll know that I'm really very upset. Now? The tears come too fast, and too much for my liking. I really hate that I cannot control my emotions as well as before. That definitely adds to my feeling extremely useless. Another reason why I didn't update earlier - I don't want my blog posts to be full of anger and frustration. I don't find entries filled with such negativity of much substance.
   
   
8. Facebook is killing me. I do want to know what my friends are up to. I admit - I badly want to fit in and keep myself updated with their lives. It's like an addiction for me who has to stay at home and get cooped up all day long - with only the television and laptop for company. But, I get jealous of my friends posting photos of them with other friends; living normal lives and especially the girls - looking beautiful and just awesome. I can't force them to post what I want to see and not post what gets me upset, that would just be mean and selfish of me. But I won't deny, it hurts. I look at myself - bald, unhealthy and useless. I don't feel good about myself, not one bit.
   
   
9. I'm getting tired. Really tired. When will freedom arrive? When can I fully recover, and recover the life I'm supposed to have? It's so hard to stay positive as time goes by. Giving up is definitely not an option, but fighting on is just as difficult.
   

Labels: lymphoma and me, musings

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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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Hello readers! This isn't going to be a very long entry, but I just thought I felt like sharing this little experience of mine while I was in the hospital last Tuesday - the day I published my previous entry.

I did mention that I had my stem cells extracted and collected for harvesting. During the start of my session, I felt my chair vibrate. I thought it was just the machine producing strong vibrations, hence causing the chair to vibrate. I shrugged the thought away and continued observing the machine; being in awe of its complexity.

Then, the bed that was in the room started to shake as well. I assumed it was just me feeling dizzy since I was having my blood extracted from my body for filtering. My assumption continues for the next few seconds till one of the oncology nurses who was using the bed as a makeshift table jumped up from her chair so suddenly, and started asking both my parents who were there, "Did you feel that too? The place is shaking!"

My parents felt the tremors too. I then realised that the vibrations from the chair I was sitting on wasn't because of the machine, but from the earthquake that happened in Indonesia on the same day.

I am very lucky in the sense that we only felt the tremors, and things weren't too serious. Imagine me having to evacuate the hospital with me connected to one complicated and heavy machine! (I was on the fifth floor by the way.) Not forgetting the patients who are undergoing surgeries and other complex medical procedures, because quite a number of Malaysians who felt the tremors are forced to evacuate the buildings they were in.

The last time I experienced tremors was back when I was still in secondary school. I was attending a Japanese class when suddenly the tables and chairs in the classroom started to shake!

I'm thankful I'm living in Malaysia, where we are earthquake-free at the moment. Hopefully we all can stay safe with all these natural disasters happening around the world.

Cheers!

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Hello readers! I shall try not to type anything irrelevant and focus on just the events that occured since my last entry.

Firstly, I had a PICC line and CVC line inserted.

The former is done because:

1. I require multiple blood and platelet transfusions due to my low blood counts caused by chemotherapy.
   
2. I require multiple blood tests which needed blood to be drawn out quite frequently.
3. It is needed for my bone marrow transplant. I'll have to undergo a high-dose chemotherapy to kill basically nearly every living cell in my body - both cancerous and non-cancerous cells.
4. It will certainly make my life slightly easier, because then I won't need to have needles poked/inserted into me many times. With a low platelet count, my blood can't clot easily like an average healthy person, i.e. there's a possibility that I can literally bleed to death. Scarring will also be more serious, and both new scars and old take a much longer time to heal.
   

The latter is done because I need to have my stem cells extracted for harvesting for my bone marrow transplant. I went for one session yesterday, and another earlier in the morning. Hopefully I had enough stem cells collected, or I'll have to go for another session. It's quite a tiring procedure, because from how I see it - stem cell extraction works like kidney dialysis. How I would bluntly describe the process - many tubes are connected to my CVC line and to this machine, which takes my blood out and extracts my stem cells. This takes around three to four hours, maybe longer. Not something I would ever like to experience again, really.

Secondly, I have been in KL staying in the hospital for long periods of time. I can hardly remember how home in JB looks like, since I have been away so much. The moment I'm admitted, I never see the light of day(the view from the window doesn't count) till I'm discharged. And when I'm here, I normally have to stay for a minimum of five days. Go figure.

Thirdly, my side effects are really a killer this time. I'm not going to mention each and every one of them here, but I'll talk about the one that bugged me the most. I had this sore throat that was so severe, words like 'awful' and 'horrible' aren't enough to describe how bad it affected me. Something simple like swallowing became such a chore! I would equate the pain to having someone force a small sharp-edged rock down your throat. Now, imagine that kind of pain every time you have to swallow food, water and even just saliva. Not forgetting that I also had pills to take. The pain was really so bad, I tear up every time I had to swallow anything. It didn't help that I had ulcers all over my gums and tongue which conveniently multiplied the pain and discomfort of eating and drinking. Lesson learnt here - never take eating and drinking for granted. I feel lucky that I didn't need to be fed through a tube. So should all of you normal, healthy people!

Fourthly, I am recovering from a blood infection. It caused me to have a fever of the highest temperature yet - 39.8°C. I am very glad I am still sane enough to type this entry out.

Last but not least, I am proud to say that I am bald again. Like hey, which other girl you know is willing to go bald not once, but twice and had actually done it? The whole hair loss episode haunted me again shortly before me returning to KL for my third chemotherapy session. I thought it would be more practical to just shave all my hair off and spend my endurance in facing the gruelling side effects of treatment. My mum mentioned to me about getting me a wig a few times with my dad supporting the idea, but I declined. I mean, to invest in a good wig is quite pricey and my parents are already spending a whole lot of cash just to get me well and treated. I honestly don't want to add to their already existing burden because I'm insecure about my looks! I personally know that I will definitely rant about my insecurities here one day about how I currently look like, but I don't think that's going to be the main issue for now. And truthfully, it never will be.

*I kept this blog locked for a few days because I wanted to make some minor changes to the layout and make it more reader-friendly. I blame fatigue for not letting me do it all in a few short hours, which is why it took me a couple of days to sort everything out. I'll add in new things here and there once in a while, so if you're not too busy with your current lives do feel free to drop by!

I hate to sound like a parrot, but to those who are truly concerned about me, have been leaving me really nice messages on Facebook and remembering me in their prayers - they have my sincerest thanks. I also apologise for not replying to everyone that contacted me. The people-pleaser part in me is nagging at me a lot, and I feel obliged to reply - which brings up this immense guilt in me every single day. I do feel bad for not responding right away and possibly making people worry, but I'm just not up to it with my current energy levels. It might be too much to ask, but I hope that everyone can try to understand this, forgive me for very late responses that may come months after you contacted me and not assume what you don't know. To be assured of that will seriously make me feel a lot better about myself and going through treatment won't be all that bad after all. (:

Cheers!

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Hello dear readers!

After two gruelling weeks, I am finally able to update everyone about what's going on in my once again chaotic battle against cancer.

Please click on the links provided if you need definitions of certain medical terms and maybe a clearer picture of what I'm trying to explain regarding my condition. (:

*A fortnight ago, I found out that the right side of my abdomen had been feeling sore. The soreness was so bad, it made me lose sleep at night. I had this coughing fit which has been going on for a month, and to those who are aware of my condition - me coughing non-stop was the major symptom that led me to finding out I had cancer. I consumed three bottles of cough syrup and there was no sign of me recovering. My oncologist in Johor Bahru also diagnosed me with a severe case of pharyngitis. I also have frequent bouts of fever exceeding 38.0°C. According to my oncologist, other than the soreness I experienced - the other symptoms were most likely to be side effects from the 25 fractions of radiotherapy I went through.

I made many trips back to the hospital to see my oncologist as my symptoms were still there after being on constant oral medication for a month. Finally, when I brought up the topic of my soreness to my oncologist - he told me that he felt a ballotable mass somewhere near my right kidney. He advised my parents and I to bring forward my PET scan.

I went for the scan the very next day, and the results were..I wouldn't say shocking, but it's certainly not optimistic at all.

My parents and I found out from the radiologist that even though the original tumour that I had had shrunk tremendously from approximately 6cm to 1.3cm, it was still there. What's more, I have five new tumours in my body - two of them being really large tumours surrounding both my kidneys, and three more smaller ones that are in positions near my lumbar vertebrae. The smaller tumours that are affecting my backbone has caused my diaphragm to be slightly dysfunctional - hence me having slight breathing difficulties, causing the sore throat and the cough. My kidneys were still functioning normally, fortunately, so nobody suspected anything like this to happen.

Surprisingly, I didn't cry hearing all that. I surprised even myself when I still managed to speak optimistically about the whole situation. I didn't even tear up. Anybody would think that I might be too taken aback by the relapse of my cancer in just three short months, and had gone disturbingly positive in reaction to such major news. But really, I just couldn't cry. What I do know - I need to seek treatment immediately.

Right after I got the results of my scan, it's back to my oncologist's clinic - and he and my haematologist in Malacca both decided that I need to go for further treatment in KL.

On the 11th of April, my parents and I went to KL. I was admitted into the hospital on that day itself. I had my bone marrow cells extracted for a biopsy and the stem cells preserved for a bone marrow transplant. (I might blog about this process in a separate blog entry.)

The next morning, I started a new course of chemotherapy with stronger drugs than those used previously for my chemotherapy sessions in Malacca last year. My first session lasted for three days continuously. I managed to stay alert for the first day, but then I eventually felt extreme fatigue and constantly slept the hours away. I had steroids given through my IV drip so many times, I lost count. The only thing I know is that the steroids have this nauseating smell, and whenever it's given to me, my arm hurt because of the pressure in my vein. (I really hate steroids, but it's vital in my course of treatment, so I guess I just have to deal with it.)

Recuperating from this chemotherapy session was nearly like living hell to not just me, but also to both my parents. I felt tired all the time, and I constantly felt weak and exhausted. I didn't have the energy to walk, to move around, to even eat or drink anything. It didn't help that the side effects of chemotherapy made me feel even worse than ever. I lost my sense of taste, and my saliva tasted like vomit. I kid you not. Food tasted terrible, and drinking any form of liquids was torturous to me. Yet, I needed to eat because I'm on oral medication and I got underweight all of a sudden. I looked like an anorexic, and I could see my bones jutting out. My physical appearance really disturbed me, and for the first time in battling cancer - I really felt like I was in the depths of despair, and nobody could pull me out. And no, I'm really not exaggerating.


Thankfully, despite me still having some of those fears - I am recovering. I know it.

I just still need to keep fighting for my life. There may be times when I feel like giving up, but I definitely won't back out no matter what.

Especially with the fact that I have so much encouragement and support from all of you readers that are truly concerned about my plight! I appreciate the texts and supportive words on my Facebook wall; they really made me stronger and cemented my drive to continue fighting cancer and not let anybody down. I'll try my best to respond to everyone, but I just want to let everyone know - I truly appreciate every single wall post, every single text, every single blog entry, every single call, every single prayer. Words are seriously not enough to describe how loved I feel, and how thankful and grateful I am.

And also, thank you to everyone who remembered my birthday! I celebrated my 18th birthday with my parents. Nothing elaborate, just a simple day out in Malacca without a worry or care about any future ordeals I have to face. I'll also try to say my thank yous to everyone who wished me!

I do apologise to my friends who called me on my birthday, but I didn't answer any of your calls. For your information, another side effect from my recent chemotherapy session is that I now have partial hearing loss affecting both my ears. I was particularly extra deaf during my birthday, so I didn't answer any phone calls because I wouldn't be able to hear a word you say. In case you're wondering how severe this problem is to me, I can hardly hear myself talking to my parents or the doctor and have to resort to near-screams to be able to at least hear myself. Crossing roads or being at a car park is even worse - I cannot estimate the distance of vehicles from me. A car can just zoom from behind me, screeching tires and all, but I either wouldn't know there's a car speeding behind me or I still think the car is quite a distance away from me. Honestly, I nearly got knocked down by a few cars because of this problem...Thankfully, my parents now know better and they now have to hold my hand to ensure I don't just wander off and make myself a danger to..well, myself.

I made a joke that even if cancer and my treatment course won't kill me first, a car accident would. I don't think my parents found it very funny. Oh well, so much for being an optimist! Hahah.

I hope everybody is satisfied with this update, and I hope this entry can take some worries out of your mind. :D

Cheers, and to all my Christian friends - Happy Easter Sunday!

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

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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:

1. I passed SPM 2010.
2. I didn't score straight A's.
   
3. I did better than I expected.
4. I did well for English. I didn't let En. Ismail down.
   
5. My parents and brother are happy with my results.
6. 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:


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.


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.

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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.

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I had enough.

To those of you who continuously ask me whether I'm okay or not, and seem to not believe me when I say I'm okay when I really mean it - here's some good news for you.

I'm not okay. Not at all. Not one bit.

Impatience and unbalanced hormones are both making my life miserable since radiotherapy ended.

Complete recovery from lymphoma seems unachievable.

Yes yes, call me a pessimist all you want. You think it's that simple?

You try having cancer when you're a teen who is stepping into adulthood, just wanting to have the time of your life with your family and friends.

Instead, you're isolated from civilisation and society itself. Why? The lack of white blood cells and your immune system being weaker than before. Your body cannot cope with the everyday germ, bacteria, or virus. Being infected can cause the cancer cells to massively spread to the rest of your body, namely your important internal organs. You can die just because of what is thought of as a minor flu among you normal and healthy people.

Hello! I didn't ask for cancer to happen to me. Especially not at this point of life when I'm turning 18 this year, and I was diagnosed in July last year! Just a few months more, and it would have been a year since lymphoma turned up unnecessarily in my life.

I tried to stay positive. I tried to be happy. I put a smile on my face whenever possible, I write cheerier entries on my blog, I avoid going online when I feel depressed and frustrated because I don't want to spread my unhappiness to others. I don't want to worry the people who care for me. I don't want them to feel sad or useless because they can't help lessen my pain. They can't help my cancer to just vanish into thin air and make me healthy again.

I'm sick and tired of all this waiting.

I have to wait for another agonising three months before I can go for another PET scan. I will only find out whether radiotherapy has worked its wonderful magic on me and make me cancer-free in three months' time.

Honestly, who doesn't hope for a complete recovery then?

But seriously, I no longer have high hopes for my next scan.

I had expected a complete recovery after six sessions of chemotherapy last year when I went for my first PET scan in December. Why? My doctor told me so. He said I have a high chance of complete recovery since throughout the last six months, my progress has been astoundingly great!

I made plans. Plans to finally spend time with my friends from school. Plans to go up to KL to meet up with two great people I have known online. Plans to find a job and lessen the burden of my parents who have been spending so much on my treatment. Plans to learn driving and be more independent. Plans to be a better daughter, plans to be a more responsible person.

All shattered in a matter of seconds, when the radiotherapist told me the tumour is still there, and I need to undergo further treatment.

The only good news? The tumour is smaller than before.

Fine, that's great. But to me, it's nearly like a "So what?" moment. I still have cancer. That tumour is still haunting me everyday.

I don't want to harbour high hopes on anything anymore, if it's going to result in broken dreams and a broken-hearted me.

Cancer has caused me to have this large gap between my friends in school and me. I feel like I missed out on countless conversations and fun times. I feel left out and forgotten.

Friends and friendships mean a lot to me. I'm a person who treasure friendships a lot.

No matter how much my mum tells me that friends, no matter how close they are to you now, will never stay your friends for life - I still hope that my friends can stay as friends. I hate arguments and misunderstandings between my friends and me. It really hurts me when something bad happens. Something that can cause the loss of a friend. It doesn't matter who is in the fault - whenever things go wrong, it just sucks.

I can cry on and off throughout the day, everyday. Till the problem is actually solved. To me, the possibility of losing a friend, or having a friend betray your trust - the pain is even more than falling out of love or having to deal with a breakup. I don't get romantic love at all, I'm more of a friendship love kind of girl.

I understand how all of them are busy with their own lives, with their own set of problems to solve. I understand. I really do.

It upsets me time and time again that when my friends are having problems, I can't be there for them. I cannot offer them a shoulder to cry or lean on. I cannot offer them a listening ear. I cannot give them a hug and let them know that I'll be there for them. It's just different communicating online and talking face to face.

I really feel like I'm just a fragment of my friends' past. A part of their memory. Someone who came into their lives, and is now a has been. I feel that cancer has robbed me of precious time to be spent with my friends.

I used to think that between family and friends, I'll choose my friends first. That's how much I treasure my friends. How much I love them. What I'm willing to do for them just to make them feel better, or to keep the friendship going.

It disappoints me, that friendships nowadays are so brittle and fragile. Some people are so selfish, they don't even consider your feelings. They'll do anything they can to achieve their personal goals, and hurting people along the way just doesn't matter, as long as they get what they want in the end.

I try not to rely on my friends too much, but I just can't. I trust them so much, love them so much. But what do I get in the end from some of my friends that were once so dear to me?

Hurt, betrayal, sadness, disappointment. Lovely presents, really. Just lovely.

Some of my friends that I can really trust and have no need to compete with them for anything are just so far away. I just wish I can fly off to another country and just spend time with them, pour my heart out, get some proper and mature advice and opinions.

Love yourself before loving others.

Guess what? I don't know how to.

I avoid going on Facebook, because going on Facebook can actually get me depressed. Why? I see photos of friends having a blast with other friends. Having a blast with college life. Having a blast working. Having a blast going out there and exploring the world.

Well, that could have been me.

I'm wasting my youth and the remaining years of me being a teenager - locked up at home, seeing the same things everyday. There's nothing new, there's nothing fresh, there's nothing exciting. My social skills are now nil, and I now stutter and cannot speak as fluently as I used to. I'm embarrassed of talking to people on the phone. I'm embarrassed to talk to people other than my immediate family members. I feel useless, I feel like I'm now disabled.

Compared to everyone and anyone of you that knows me, I feel inferior to all of you.

I don't want to be pitied by others. I don't want others to shed tears over my predicament.

And especially, I don't want to be famous and well-known because of me being a 17 year old going on 18 having cancer. No, please, enough of that.


I'm mentally, emotionally and physically tired.

I'm not as strong as all of you think. I have those moments when I feel totally useless, weak and hopeless.

Don't be mistaken. I'm not giving up on anything. I'm not giving up on myself, nor the hopes of recovering.

I'm just going through a tough time, emotionally and mentally.

I'm just..not okay.

P.S.: I'll respond to comments, Facebook posts, Formspring questions and Cbox messages when I feel better about myself. I'm sorry. I need time, and time isn't on my side.

Cheers.

Labels: lymphoma and me, medical procedures, musings

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Hello again readers.

I realised my previous entry was a very emotional one. Well, I guess that's the result of too much pent-up emotions.

Also, I realised the need to write a new entry, a more cheery one at that, to avoid some of my loved ones who read this blog getting too upset and/or worried for me.

So, I started radiotherapy on the 20th this month, and I had nine fractions done so far. The radiotherapists are a nice lot of people. One's a constant joker, one's a knowledgeable man, and one who treats me like her little sister.

I often see the same faces during the weekdays, since once a patient starts undergoing radiotherapy, he or she has to continue the treatment all the way until all fractions are completed. You can't stop halfway, or miss even one fraction. Maybe there are special circumstances to the aforementioned sentence, but normally, it brings dire consequences if one's radiotherapy regime is not strictly followed.

Lymphoma is still not a very commonly known cancer. Point is definitely proven, because even I have not heard of such a cancer till I myself was diagnosed with it. Most of the patients I have met were diagnosed with cancers such as cervical cancer, nose cancer, and breast cancer - the more common types of cancer affecting humans. And honestly, even though we have different types of cancer, only we can understand the side effects we have to face from chemotherapy and/or radiotherapy.

From that, I would like to quote a fellow blogger, Ming Wei, who was also diagnosed with lymphoma earlier in the year.

I'm just directly translating, but it sounds something like this.

"You're not a fish.
So how do you know whether the fish is happy or sad?"
It sounds more poetic in Chinese, really. But it cannot be any truer than that. In simpler terms,


No offense, readers. I am aware that my family and friends are trying their very best to understand my condition - whether physically or emotionally.

But no matter what, healthy and normal people can never fully and thoroughly understand what we have to endure through treatment, and life after cancer.

Only fellow cancer patients can truly understand how uncomfortable chemotherapy is.

To have a needle pricked into your veins and have very toxic medicinal fluids enter your body.
To go under the knife to have this inserted into your body for those having to endure several sessions of chemotherapy.
To go through hair loss, which harbours great emotional burden to many - especially women.

There are, of course, a lot more side effects from treatment, but I'm sure you can do your own research and homework. What's more, a lot of the side effects are general knowledge.

From radiotherapy, the skin where the rays are directed may be damaged. When I say damaged, just think of you and your worst case of sunburns. Yeah, just like that.

And wherever the rays are directed at (obviously it's where the tumour is in the body), more side effects tend to turn up.

Let's say one who has nose cancer undergoes radiotherapy, he or she tends to suffer from a runny/blocked nose, severe headaches and dizzy spells. This is because the rays tend to affect the area where the tumour is and the surroundings areas.

One who has cervical cancer, might suffer from a very bad case of diarrhea, abdominal pains, and stomach discomfort.

As for me, some of the rays will partially hit one of my main blood vessels (the superior vena cava) and my throat (the oesophagus), so I have been warned by my doctor that I will have a weak heart and in due time, continuous coughing, sore throats, and difficulty in swallowing food.

Some of the patients have to undergo both chemotherapy and radiotherapy at the same time. I'm considered lucky in that sense. The side effects from chemotherapy are bad enough, and having the side effects from radiotherapy to deal with as well - not a very ideal combination at all.

What I have mentioned are nothing but the facts. I may not be a certified doctor in this field, but I do not share untruths and rumours that are not proven scientifically with my readers. There are enough assumptions out there, and truthfully, I'm sick of each and every one of those assumptions. Instead, sharing the facts to anyone who reads my blog is a good start in erasing those assumptions one by one and having more people understand cancer and how it affects people and their everyday lives.

Not a very cheery entry, but at least it's not emotional and angsty. (:

Cheers.

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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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Edits are going on in this cancer blog of mine. I have added another page, and it's mainly about my treatment course since the start of my cancer journey. I hope I didn't miss any important details, but it's certainly full of just that - details. To those of you who are new here, or would like to know of what I have been going through - more precise information is available here.

Cheers!

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It's not easy moderating so many comments. I wonder how famous bloggers handle their fans/haters' comments.

Hopefully, I didn't accidentally publish a comment that was not meant to be published; the people who wanted to be kept anonymous or posted their contact details.

There were one or two comments that had contact numbers. Even though it wasn't mentioned, but I didn't publish those either. I don't think they will appreciate prank calls or having their contact numbers exposed. From personal experience, I know I don't.

I think I will dedicate an entire blog entry to replying these comments.

Meanwhile, I will do my best to maintain this blogging spirit and update as often as possible about exactly what I had been through to those of you who frequently ask.

Also, I added a new page for this blog. If you look beneath my blog banner and next to the word 'Home', I dedicated my 'Inspiration' page to this amazing individual. Personally, I really hope that any one of you readers will take some time off to read about her. She's more amazing and tougher than me, and ever will be.

Cheers!

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Today marks the 100th day since my stem cell transplant.

Even though the side effects from treatment are still causing me discomforts, I guess it'll cause less worry among my friends, readers and anyone who knows me well with an update.

I'll try and keep this short and concise. (It'll be hard though, I have a lot to say; do bear with me.)

1. Words will never be enough to describe how thankful I am for everyone's generous contributions. (I'll appreciate it a lot if some of you do not use the word 'donations'. It makes me sound like I'm a charity case. Or am I, without me realising it...?) They have definitely helped. I just hope that I can recover soon and have no more relapses so I don't have to burden my parents more; them spending so much money on me when we're not from a well-to-do family. I will always feel guilty for that.
   
   
2. I will definitely thank each and every single person that had contributed personally to those who had informed me of their details or/and their friends' and family members' details. It will take a lot of time though, please be and stay understanding of my condition. One of the main reasons why I haven't been updating is because I get very tired easily nowadays: it's a common side effect from the transplant.
   
   
3. I am recuperating from my stem cell transplant, but I sincerely have no idea whether I'm on the road to recovery or not. The point is:
   
   Recuperating ≠ Recovering.
   Frankly, who doesn't hope for the latter? I wish I have X-ray vision to see whether there is any growth of anything abnormal or not, so I not only cannot give an answer to every concerned individual who asks, but also to my family and myself. It is worrying whenever I feel a pain here or there, I'll get paranoid about it and worry that my cancer may be back to haunt me. You'll be doing me a huge favour by not asking, because I feel guilty that I cannot produce an answer for you. Many thanks in advance.
   
   
4. I am under quarantine. Strictly no visitors allowed, I'm sorry to say. I do miss my friends a lot and it upsets me whenever I have to reject any of my friends who wants to visit and keep me company(and sane, as well). I'm sorry, and truly am.
   
   
5. Every comment and tag, I had read. I really appreciate them so much; all this support is a good reason for me to stay positive and strong whenever I get discouraged about my condition. I really would like to respond to everyone, but I find it not possible at the moment. But sincerely, thank you, you and you.
   
   
6. As much as they are filled with good intentions, please think before you ask me any questions. Some of them are not only offensive, but also very hurtful. I can't expect everyone to understand, because all of you are healthy people while I'm the one stuck with cancer. From a cancer patient's point of view, I believe that generally, only cancer patients(in my case, blood cancer patients) can really understand how I feel and what I'm coping with; the physical discomforts, the emotional breakdowns, the limitations, the challenge to maintain positive, happy and content just to see the light of another day.
   
   
7. Emotions-wise, I have been feeling like a wreck very often. The smallest of matters can trigger me to cry and actually sob loudly(I don't know what my neighbours will think of me, but what the heck). It's not normal to me; I was very good at holding back my tears during my pre-cancer days. Then, if I ever was caught crying in public(which was super rare) - you'll know that I'm really very upset. Now? The tears come too fast, and too much for my liking. I really hate that I cannot control my emotions as well as before. That definitely adds to my feeling extremely useless. Another reason why I didn't update earlier - I don't want my blog posts to be full of anger and frustration. I don't find entries filled with such negativity of much substance.
   
   
8. Facebook is killing me. I do want to know what my friends are up to. I admit - I badly want to fit in and keep myself updated with their lives. It's like an addiction for me who has to stay at home and get cooped up all day long - with only the television and laptop for company. But, I get jealous of my friends posting photos of them with other friends; living normal lives and especially the girls - looking beautiful and just awesome. I can't force them to post what I want to see and not post what gets me upset, that would just be mean and selfish of me. But I won't deny, it hurts. I look at myself - bald, unhealthy and useless. I don't feel good about myself, not one bit.
   
   
9. I'm getting tired. Really tired. When will freedom arrive? When can I fully recover, and recover the life I'm supposed to have? It's so hard to stay positive as time goes by. Giving up is definitely not an option, but fighting on is just as difficult.
   

Labels: lymphoma and me, musings

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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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Hello readers! This isn't going to be a very long entry, but I just thought I felt like sharing this little experience of mine while I was in the hospital last Tuesday - the day I published my previous entry.

I did mention that I had my stem cells extracted and collected for harvesting. During the start of my session, I felt my chair vibrate. I thought it was just the machine producing strong vibrations, hence causing the chair to vibrate. I shrugged the thought away and continued observing the machine; being in awe of its complexity.

Then, the bed that was in the room started to shake as well. I assumed it was just me feeling dizzy since I was having my blood extracted from my body for filtering. My assumption continues for the next few seconds till one of the oncology nurses who was using the bed as a makeshift table jumped up from her chair so suddenly, and started asking both my parents who were there, "Did you feel that too? The place is shaking!"

My parents felt the tremors too. I then realised that the vibrations from the chair I was sitting on wasn't because of the machine, but from the earthquake that happened in Indonesia on the same day.

I am very lucky in the sense that we only felt the tremors, and things weren't too serious. Imagine me having to evacuate the hospital with me connected to one complicated and heavy machine! (I was on the fifth floor by the way.) Not forgetting the patients who are undergoing surgeries and other complex medical procedures, because quite a number of Malaysians who felt the tremors are forced to evacuate the buildings they were in.

The last time I experienced tremors was back when I was still in secondary school. I was attending a Japanese class when suddenly the tables and chairs in the classroom started to shake!

I'm thankful I'm living in Malaysia, where we are earthquake-free at the moment. Hopefully we all can stay safe with all these natural disasters happening around the world.

Cheers!

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Hello readers! I shall try not to type anything irrelevant and focus on just the events that occured since my last entry.

Firstly, I had a PICC line and CVC line inserted.

The former is done because:

1. I require multiple blood and platelet transfusions due to my low blood counts caused by chemotherapy.
   
2. I require multiple blood tests which needed blood to be drawn out quite frequently.
3. It is needed for my bone marrow transplant. I'll have to undergo a high-dose chemotherapy to kill basically nearly every living cell in my body - both cancerous and non-cancerous cells.
4. It will certainly make my life slightly easier, because then I won't need to have needles poked/inserted into me many times. With a low platelet count, my blood can't clot easily like an average healthy person, i.e. there's a possibility that I can literally bleed to death. Scarring will also be more serious, and both new scars and old take a much longer time to heal.
   

The latter is done because I need to have my stem cells extracted for harvesting for my bone marrow transplant. I went for one session yesterday, and another earlier in the morning. Hopefully I had enough stem cells collected, or I'll have to go for another session. It's quite a tiring procedure, because from how I see it - stem cell extraction works like kidney dialysis. How I would bluntly describe the process - many tubes are connected to my CVC line and to this machine, which takes my blood out and extracts my stem cells. This takes around three to four hours, maybe longer. Not something I would ever like to experience again, really.

Secondly, I have been in KL staying in the hospital for long periods of time. I can hardly remember how home in JB looks like, since I have been away so much. The moment I'm admitted, I never see the light of day(the view from the window doesn't count) till I'm discharged. And when I'm here, I normally have to stay for a minimum of five days. Go figure.

Thirdly, my side effects are really a killer this time. I'm not going to mention each and every one of them here, but I'll talk about the one that bugged me the most. I had this sore throat that was so severe, words like 'awful' and 'horrible' aren't enough to describe how bad it affected me. Something simple like swallowing became such a chore! I would equate the pain to having someone force a small sharp-edged rock down your throat. Now, imagine that kind of pain every time you have to swallow food, water and even just saliva. Not forgetting that I also had pills to take. The pain was really so bad, I tear up every time I had to swallow anything. It didn't help that I had ulcers all over my gums and tongue which conveniently multiplied the pain and discomfort of eating and drinking. Lesson learnt here - never take eating and drinking for granted. I feel lucky that I didn't need to be fed through a tube. So should all of you normal, healthy people!

Fourthly, I am recovering from a blood infection. It caused me to have a fever of the highest temperature yet - 39.8°C. I am very glad I am still sane enough to type this entry out.

Last but not least, I am proud to say that I am bald again. Like hey, which other girl you know is willing to go bald not once, but twice and had actually done it? The whole hair loss episode haunted me again shortly before me returning to KL for my third chemotherapy session. I thought it would be more practical to just shave all my hair off and spend my endurance in facing the gruelling side effects of treatment. My mum mentioned to me about getting me a wig a few times with my dad supporting the idea, but I declined. I mean, to invest in a good wig is quite pricey and my parents are already spending a whole lot of cash just to get me well and treated. I honestly don't want to add to their already existing burden because I'm insecure about my looks! I personally know that I will definitely rant about my insecurities here one day about how I currently look like, but I don't think that's going to be the main issue for now. And truthfully, it never will be.

*I kept this blog locked for a few days because I wanted to make some minor changes to the layout and make it more reader-friendly. I blame fatigue for not letting me do it all in a few short hours, which is why it took me a couple of days to sort everything out. I'll add in new things here and there once in a while, so if you're not too busy with your current lives do feel free to drop by!

I hate to sound like a parrot, but to those who are truly concerned about me, have been leaving me really nice messages on Facebook and remembering me in their prayers - they have my sincerest thanks. I also apologise for not replying to everyone that contacted me. The people-pleaser part in me is nagging at me a lot, and I feel obliged to reply - which brings up this immense guilt in me every single day. I do feel bad for not responding right away and possibly making people worry, but I'm just not up to it with my current energy levels. It might be too much to ask, but I hope that everyone can try to understand this, forgive me for very late responses that may come months after you contacted me and not assume what you don't know. To be assured of that will seriously make me feel a lot better about myself and going through treatment won't be all that bad after all. (:

Cheers!

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

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Hello dear readers!

After two gruelling weeks, I am finally able to update everyone about what's going on in my once again chaotic battle against cancer.

Please click on the links provided if you need definitions of certain medical terms and maybe a clearer picture of what I'm trying to explain regarding my condition. (:

*A fortnight ago, I found out that the right side of my abdomen had been feeling sore. The soreness was so bad, it made me lose sleep at night. I had this coughing fit which has been going on for a month, and to those who are aware of my condition - me coughing non-stop was the major symptom that led me to finding out I had cancer. I consumed three bottles of cough syrup and there was no sign of me recovering. My oncologist in Johor Bahru also diagnosed me with a severe case of pharyngitis. I also have frequent bouts of fever exceeding 38.0°C. According to my oncologist, other than the soreness I experienced - the other symptoms were most likely to be side effects from the 25 fractions of radiotherapy I went through.

I made many trips back to the hospital to see my oncologist as my symptoms were still there after being on constant oral medication for a month. Finally, when I brought up the topic of my soreness to my oncologist - he told me that he felt a ballotable mass somewhere near my right kidney. He advised my parents and I to bring forward my PET scan.

I went for the scan the very next day, and the results were..I wouldn't say shocking, but it's certainly not optimistic at all.

My parents and I found out from the radiologist that even though the original tumour that I had had shrunk tremendously from approximately 6cm to 1.3cm, it was still there. What's more, I have five new tumours in my body - two of them being really large tumours surrounding both my kidneys, and three more smaller ones that are in positions near my lumbar vertebrae. The smaller tumours that are affecting my backbone has caused my diaphragm to be slightly dysfunctional - hence me having slight breathing difficulties, causing the sore throat and the cough. My kidneys were still functioning normally, fortunately, so nobody suspected anything like this to happen.

Surprisingly, I didn't cry hearing all that. I surprised even myself when I still managed to speak optimistically about the whole situation. I didn't even tear up. Anybody would think that I might be too taken aback by the relapse of my cancer in just three short months, and had gone disturbingly positive in reaction to such major news. But really, I just couldn't cry. What I do know - I need to seek treatment immediately.

Right after I got the results of my scan, it's back to my oncologist's clinic - and he and my haematologist in Malacca both decided that I need to go for further treatment in KL.

On the 11th of April, my parents and I went to KL. I was admitted into the hospital on that day itself. I had my bone marrow cells extracted for a biopsy and the stem cells preserved for a bone marrow transplant. (I might blog about this process in a separate blog entry.)

The next morning, I started a new course of chemotherapy with stronger drugs than those used previously for my chemotherapy sessions in Malacca last year. My first session lasted for three days continuously. I managed to stay alert for the first day, but then I eventually felt extreme fatigue and constantly slept the hours away. I had steroids given through my IV drip so many times, I lost count. The only thing I know is that the steroids have this nauseating smell, and whenever it's given to me, my arm hurt because of the pressure in my vein. (I really hate steroids, but it's vital in my course of treatment, so I guess I just have to deal with it.)

Recuperating from this chemotherapy session was nearly like living hell to not just me, but also to both my parents. I felt tired all the time, and I constantly felt weak and exhausted. I didn't have the energy to walk, to move around, to even eat or drink anything. It didn't help that the side effects of chemotherapy made me feel even worse than ever. I lost my sense of taste, and my saliva tasted like vomit. I kid you not. Food tasted terrible, and drinking any form of liquids was torturous to me. Yet, I needed to eat because I'm on oral medication and I got underweight all of a sudden. I looked like an anorexic, and I could see my bones jutting out. My physical appearance really disturbed me, and for the first time in battling cancer - I really felt like I was in the depths of despair, and nobody could pull me out. And no, I'm really not exaggerating.


Thankfully, despite me still having some of those fears - I am recovering. I know it.

I just still need to keep fighting for my life. There may be times when I feel like giving up, but I definitely won't back out no matter what.

Especially with the fact that I have so much encouragement and support from all of you readers that are truly concerned about my plight! I appreciate the texts and supportive words on my Facebook wall; they really made me stronger and cemented my drive to continue fighting cancer and not let anybody down. I'll try my best to respond to everyone, but I just want to let everyone know - I truly appreciate every single wall post, every single text, every single blog entry, every single call, every single prayer. Words are seriously not enough to describe how loved I feel, and how thankful and grateful I am.

And also, thank you to everyone who remembered my birthday! I celebrated my 18th birthday with my parents. Nothing elaborate, just a simple day out in Malacca without a worry or care about any future ordeals I have to face. I'll also try to say my thank yous to everyone who wished me!

I do apologise to my friends who called me on my birthday, but I didn't answer any of your calls. For your information, another side effect from my recent chemotherapy session is that I now have partial hearing loss affecting both my ears. I was particularly extra deaf during my birthday, so I didn't answer any phone calls because I wouldn't be able to hear a word you say. In case you're wondering how severe this problem is to me, I can hardly hear myself talking to my parents or the doctor and have to resort to near-screams to be able to at least hear myself. Crossing roads or being at a car park is even worse - I cannot estimate the distance of vehicles from me. A car can just zoom from behind me, screeching tires and all, but I either wouldn't know there's a car speeding behind me or I still think the car is quite a distance away from me. Honestly, I nearly got knocked down by a few cars because of this problem...Thankfully, my parents now know better and they now have to hold my hand to ensure I don't just wander off and make myself a danger to..well, myself.

I made a joke that even if cancer and my treatment course won't kill me first, a car accident would. I don't think my parents found it very funny. Oh well, so much for being an optimist! Hahah.

I hope everybody is satisfied with this update, and I hope this entry can take some worries out of your mind. :D

Cheers, and to all my Christian friends - Happy Easter Sunday!

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

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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:

1. I passed SPM 2010.
2. I didn't score straight A's.
   
3. I did better than I expected.
4. I did well for English. I didn't let En. Ismail down.
   
5. My parents and brother are happy with my results.
6. 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:


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.


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

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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

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I had enough.

To those of you who continuously ask me whether I'm okay or not, and seem to not believe me when I say I'm okay when I really mean it - here's some good news for you.

I'm not okay. Not at all. Not one bit.

Impatience and unbalanced hormones are both making my life miserable since radiotherapy ended.

Complete recovery from lymphoma seems unachievable.

Yes yes, call me a pessimist all you want. You think it's that simple?

You try having cancer when you're a teen who is stepping into adulthood, just wanting to have the time of your life with your family and friends.

Instead, you're isolated from civilisation and society itself. Why? The lack of white blood cells and your immune system being weaker than before. Your body cannot cope with the everyday germ, bacteria, or virus. Being infected can cause the cancer cells to massively spread to the rest of your body, namely your important internal organs. You can die just because of what is thought of as a minor flu among you normal and healthy people.

Hello! I didn't ask for cancer to happen to me. Especially not at this point of life when I'm turning 18 this year, and I was diagnosed in July last year! Just a few months more, and it would have been a year since lymphoma turned up unnecessarily in my life.

I tried to stay positive. I tried to be happy. I put a smile on my face whenever possible, I write cheerier entries on my blog, I avoid going online when I feel depressed and frustrated because I don't want to spread my unhappiness to others. I don't want to worry the people who care for me. I don't want them to feel sad or useless because they can't help lessen my pain. They can't help my cancer to just vanish into thin air and make me healthy again.

I'm sick and tired of all this waiting.

I have to wait for another agonising three months before I can go for another PET scan. I will only find out whether radiotherapy has worked its wonderful magic on me and make me cancer-free in three months' time.

Honestly, who doesn't hope for a complete recovery then?

But seriously, I no longer have high hopes for my next scan.

I had expected a complete recovery after six sessions of chemotherapy last year when I went for my first PET scan in December. Why? My doctor told me so. He said I have a high chance of complete recovery since throughout the last six months, my progress has been astoundingly great!

I made plans. Plans to finally spend time with my friends from school. Plans to go up to KL to meet up with two great people I have known online. Plans to find a job and lessen the burden of my parents who have been spending so much on my treatment. Plans to learn driving and be more independent. Plans to be a better daughter, plans to be a more responsible person.

All shattered in a matter of seconds, when the radiotherapist told me the tumour is still there, and I need to undergo further treatment.

The only good news? The tumour is smaller than before.

Fine, that's great. But to me, it's nearly like a "So what?" moment. I still have cancer. That tumour is still haunting me everyday.

I don't want to harbour high hopes on anything anymore, if it's going to result in broken dreams and a broken-hearted me.

Cancer has caused me to have this large gap between my friends in school and me. I feel like I missed out on countless conversations and fun times. I feel left out and forgotten.

Friends and friendships mean a lot to me. I'm a person who treasure friendships a lot.

No matter how much my mum tells me that friends, no matter how close they are to you now, will never stay your friends for life - I still hope that my friends can stay as friends. I hate arguments and misunderstandings between my friends and me. It really hurts me when something bad happens. Something that can cause the loss of a friend. It doesn't matter who is in the fault - whenever things go wrong, it just sucks.

I can cry on and off throughout the day, everyday. Till the problem is actually solved. To me, the possibility of losing a friend, or having a friend betray your trust - the pain is even more than falling out of love or having to deal with a breakup. I don't get romantic love at all, I'm more of a friendship love kind of girl.

I understand how all of them are busy with their own lives, with their own set of problems to solve. I understand. I really do.

It upsets me time and time again that when my friends are having problems, I can't be there for them. I cannot offer them a shoulder to cry or lean on. I cannot offer them a listening ear. I cannot give them a hug and let them know that I'll be there for them. It's just different communicating online and talking face to face.

I really feel like I'm just a fragment of my friends' past. A part of their memory. Someone who came into their lives, and is now a has been. I feel that cancer has robbed me of precious time to be spent with my friends.

I used to think that between family and friends, I'll choose my friends first. That's how much I treasure my friends. How much I love them. What I'm willing to do for them just to make them feel better, or to keep the friendship going.

It disappoints me, that friendships nowadays are so brittle and fragile. Some people are so selfish, they don't even consider your feelings. They'll do anything they can to achieve their personal goals, and hurting people along the way just doesn't matter, as long as they get what they want in the end.

I try not to rely on my friends too much, but I just can't. I trust them so much, love them so much. But what do I get in the end from some of my friends that were once so dear to me?

Hurt, betrayal, sadness, disappointment. Lovely presents, really. Just lovely.

Some of my friends that I can really trust and have no need to compete with them for anything are just so far away. I just wish I can fly off to another country and just spend time with them, pour my heart out, get some proper and mature advice and opinions.

Love yourself before loving others.

Guess what? I don't know how to.

I avoid going on Facebook, because going on Facebook can actually get me depressed. Why? I see photos of friends having a blast with other friends. Having a blast with college life. Having a blast working. Having a blast going out there and exploring the world.

Well, that could have been me.

I'm wasting my youth and the remaining years of me being a teenager - locked up at home, seeing the same things everyday. There's nothing new, there's nothing fresh, there's nothing exciting. My social skills are now nil, and I now stutter and cannot speak as fluently as I used to. I'm embarrassed of talking to people on the phone. I'm embarrassed to talk to people other than my immediate family members. I feel useless, I feel like I'm now disabled.

Compared to everyone and anyone of you that knows me, I feel inferior to all of you.

I don't want to be pitied by others. I don't want others to shed tears over my predicament.

And especially, I don't want to be famous and well-known because of me being a 17 year old going on 18 having cancer. No, please, enough of that.


I'm mentally, emotionally and physically tired.

I'm not as strong as all of you think. I have those moments when I feel totally useless, weak and hopeless.

Don't be mistaken. I'm not giving up on anything. I'm not giving up on myself, nor the hopes of recovering.

I'm just going through a tough time, emotionally and mentally.

I'm just..not okay.

P.S.: I'll respond to comments, Facebook posts, Formspring questions and Cbox messages when I feel better about myself. I'm sorry. I need time, and time isn't on my side.

Cheers.

Labels: lymphoma and me, medical procedures, musings

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Hello again readers.

I realised my previous entry was a very emotional one. Well, I guess that's the result of too much pent-up emotions.

Also, I realised the need to write a new entry, a more cheery one at that, to avoid some of my loved ones who read this blog getting too upset and/or worried for me.

So, I started radiotherapy on the 20th this month, and I had nine fractions done so far. The radiotherapists are a nice lot of people. One's a constant joker, one's a knowledgeable man, and one who treats me like her little sister.

I often see the same faces during the weekdays, since once a patient starts undergoing radiotherapy, he or she has to continue the treatment all the way until all fractions are completed. You can't stop halfway, or miss even one fraction. Maybe there are special circumstances to the aforementioned sentence, but normally, it brings dire consequences if one's radiotherapy regime is not strictly followed.

Lymphoma is still not a very commonly known cancer. Point is definitely proven, because even I have not heard of such a cancer till I myself was diagnosed with it. Most of the patients I have met were diagnosed with cancers such as cervical cancer, nose cancer, and breast cancer - the more common types of cancer affecting humans. And honestly, even though we have different types of cancer, only we can understand the side effects we have to face from chemotherapy and/or radiotherapy.

From that, I would like to quote a fellow blogger, Ming Wei, who was also diagnosed with lymphoma earlier in the year.

I'm just directly translating, but it sounds something like this.

"You're not a fish.
So how do you know whether the fish is happy or sad?"
It sounds more poetic in Chinese, really. But it cannot be any truer than that. In simpler terms,


No offense, readers. I am aware that my family and friends are trying their very best to understand my condition - whether physically or emotionally.

But no matter what, healthy and normal people can never fully and thoroughly understand what we have to endure through treatment, and life after cancer.

Only fellow cancer patients can truly understand how uncomfortable chemotherapy is.

To have a needle pricked into your veins and have very toxic medicinal fluids enter your body.
To go under the knife to have this inserted into your body for those having to endure several sessions of chemotherapy.
To go through hair loss, which harbours great emotional burden to many - especially women.

There are, of course, a lot more side effects from treatment, but I'm sure you can do your own research and homework. What's more, a lot of the side effects are general knowledge.

From radiotherapy, the skin where the rays are directed may be damaged. When I say damaged, just think of you and your worst case of sunburns. Yeah, just like that.

And wherever the rays are directed at (obviously it's where the tumour is in the body), more side effects tend to turn up.

Let's say one who has nose cancer undergoes radiotherapy, he or she tends to suffer from a runny/blocked nose, severe headaches and dizzy spells. This is because the rays tend to affect the area where the tumour is and the surroundings areas.

One who has cervical cancer, might suffer from a very bad case of diarrhea, abdominal pains, and stomach discomfort.

As for me, some of the rays will partially hit one of my main blood vessels (the superior vena cava) and my throat (the oesophagus), so I have been warned by my doctor that I will have a weak heart and in due time, continuous coughing, sore throats, and difficulty in swallowing food.

Some of the patients have to undergo both chemotherapy and radiotherapy at the same time. I'm considered lucky in that sense. The side effects from chemotherapy are bad enough, and having the side effects from radiotherapy to deal with as well - not a very ideal combination at all.

What I have mentioned are nothing but the facts. I may not be a certified doctor in this field, but I do not share untruths and rumours that are not proven scientifically with my readers. There are enough assumptions out there, and truthfully, I'm sick of each and every one of those assumptions. Instead, sharing the facts to anyone who reads my blog is a good start in erasing those assumptions one by one and having more people understand cancer and how it affects people and their everyday lives.

Not a very cheery entry, but at least it's not emotional and angsty. (:

Cheers.

Labels: lymphoma and me, medical procedures, musings, real life stories

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