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Hello! I'm Leonie. I’m from Malaysia. I am nineteen this year, and I have Non-Hodgkin’s Lymphoma - a kind of blood cancer. I’m just trying to live my life to the fullest, without any regrets. I'm grateful that I’m still able to wake up to a brand new day and know that I'm still alive.

I refuse to refer to my condition as a disease. I would rather phrase it as a 'series of unfortunate events'.

I learn something new with each passing day. This is the story of my journey, and you're welcome to follow me in every step that I take.

If you would like to learn more about me and my condition, feel free to click on the navigations below. If you have any queries or would just like to say hello, drop me an e-mail at dancingpapercranes@live.com.my and I'll try to respond as soon as possible!

Cheers!




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17:13
Sunday 24 April 2011
back with a vengeance!

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. (:

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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.

I was afraid that I might never recover from this ordeal.
I have this constant fear that if I kept on sleeping so much,
I might never wake up.
I was scared to die at such a young age,
when I hardly lived and I still have so much in life that I have yet to experience.
I thought I would never have the chance to continue my tertiary education.
I thought I would never be able to repay my family for taking care of me throughout my living on this Earth,
and everybody who have been so kind in aiding my parents and I in the journey of my recovery.
I thought that I would never have the chance to help people in need,
support worthy causes and give back to society.
I thought that I would never be able to grow up to be a successful and happy person, and pamper my parents in their old age.
I had so many negative thoughts,
and details of my possible funeral kept turning up in my head.


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!

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