I was officially diagnosed with Non-Hodgkin's Mediastinal Large B-cell Lymphoma in July 2010. I was seventeen. I was in Form 5; my last year of secondary school, preparing to sit for the SPM examinations.

I would consider myself an average teenager - a girl who just wanted to have fun, with her quirks; trying to survive life as a teen.

It all started with me coughing non-stop after a bout of the common flu. Despite making several trips to my family doctor's clinic, the cough just won't seem to go away even after months of being under medication. Several prescriptions of cough drops later, my family doctor suggested to my parents and I to have a chest X-ray done for me.

A large tumour was discovered; situated in between my lungs, right in front of my heart. The tumour was pressing against my trachea, causing me to have slight breathing difficulties and all that coughing.

I stopped going to school almost immediately. My parents and I went on this journey to seek advice from specialists regarding my condition.

Next, I had a needle biopsy done which confirmed that the tumour consisted of active cancer cells. I had to go for a surgical biopsy to classify what kind of cells were they, so the proper treatment could be administered right away.

The cancer had then spread to my pancreas, kidneys and liver.

Afterwards, I went through six cycles of chemotherapy(R-CHOP) and self-studied for the rest of the year. I was lucky that I was fit enough to sit for my SPM examinations at the end of the year right after my last chemotherapy session scheduled for me was completed. Or else, I wouldn't be able to successfully graduate from secondary school. I had a lot of people telling me to just skip the examinations and relax for a bit, but my stubbornness got the better of me. I was determined enough then and thankfully, I did alright. At least I could fully focus on getting myself treated without worrying that I did not complete even my most basic education in Malaysia.

At the end of 2010, I went for a PET scan. My tumour did shrink, but it was still there.

When 2011 came, I went for radiotherapy this time. I had 25 fractions done.

I thought I was on the road to recovery at long last, but unfortunately…no.

A few days before my scheduled PET scan, I felt extreme soreness at the right side of my abdomen. It made me lose sleep at night, and my coughing fit was back. The oncologist in charge of my treatment for radiotherapy felt something near my right kidney. I went for a PET scan the very next day, and found out that my cancer had spread again. New tumours surrounded both my kidneys once more and my lower spine. Radiotherapy was crossed out from the possible ways of treatment, since the radiation will damage my kidneys, affecting their function tremendously.

I had three more cycles of chemotherapy(R-ICE) done. This proved effective for awhile, but after every session - the cancer would get aggressive and we went back to square one. Finally, it was decided that I was to undergo an autologous stem cell transplant. I had my stem cells harvested, and I went through a few days of high-dose chemotherapy before the transplant. I was hospitalised for a month. I had zero immunity, and blood infections which caused high fever haunted me. I made more trips back to the hospital to rid of the infections.

I am currently under quarantine and recuperating from the transplant; dealing with the side effects from both the transplant and my radiotherapy sessions - causing breathing problems, dizziness, fatigue, etc. The latter is the cause of a now weak heart.

I went for another 27 fractions of radiotherapy due to a tumour above my left kidney discovered by a PET scan in December 2011. My left kidney has lost its function.

Through another bout of coughing, I was advised to go for a chest X-ray and have an ultrasound done at the abdominal area. It is confirmed that my cancer relapsed for the third time. I am now under a new kind of medication.

***
So much had happened throughout me battling cancer.

Other than the physical challenges I have to go through, I also have to deal with my decreasing level of self-esteem and emotional health.

I do admit, I am a typical girl when it comes to me wanting to look pretty. You may call it vanity, but I say it's just me wanting to look presentable and good.

Imagine, I went bald twice; not once, but twice! Surprisingly, no tears came! (I later realised that it’s the process of waiting for my hair to grow again that’s truly challenging.)

This time, I hope I can truly make a full recovery and do my bit for the community. Also, hopefully my cancer journey as a teenager managed to inspire you and give you a more positive outlook on life. Quite a number of us assume that cancer only affects adults. On the contrary, I am a living example that that mindset is certainly untrue. It's not for me to tell you how to live your life, but you only live once, so treasure your life and your loved ones while you still can. Stop and smell the roses once in awhile, and you'll find that life is so fulfilling with just happiness and good health. A successful career, good grades - definite bonuses and great goals, but with life being so unpredictable; you'll never know what might happen next. Be content with what you already have, count your blessings and live life to the fullest without any regrets.

Believe me, I'm speaking from personal experience.

***
Click hereto go back to reading!

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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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.

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

9 comment(s):

Post a Comment