Teen dealing with life change: CML, Processing and 2nd Opinion

I just did not know how to process this abrupt halt to life as I knew it. I had worked so hard over the past 2 years for this IB Diploma, accepted by European and UK universities. I had handed in all my papers, research papers, clocked in my CAS 150hours outside of school time, finished two years worth of coursework. And I was supposed to stay home, play sick while I was supposed to prepare for final exams?

The only place I could go to was the Beijing Teaching hospital and I had to wear a mask to protect my fragile immune system. Thankfully I didn’t have long to mope about at home, bolting myself behind my bedroom doors so I can have the freedom to mope and regret this new life turn. To those at home, I tried to maintain my cheerful attitude but couldn’t help to snap out at being treated so vulnerably.

I tried my best to reach out to a few of my closest friends to share the real reason why they aren’t seeing me in classes. Also my friends in my previous school whom I am bonded with more closely had come to visit me in hospital to meet a brave and smiling face. I didn’t know when I was initiated into the world of dark humour as a phone call to a friend who had relocated to Hong Kong proved. I had tried to crack jokes and shine a positive light on things when her laughter suddenly turned to sobs. Oops…my jokes might have gone too far. 

My close friends started to see me as this strong warrior where inside I was falling apart. The world as I knew it had changed. I mean everything was exactly the same, but just the thought that my future was snatched away from me without a single heads up…..

At the age of 17, I could still rest in the safe comfort of my parents doing all the worrying and researching and finding out my available treatment options. It was through my experience, I realised how blessed I was. My dad found favour with his bosses who pulled strings to get me immediate medical attention worldwide. Even in those moments of silent tears, heart wrenching sobs and shouting into my pillow or wadded up towel “WHY GOD??? WHY ME??? WHY NOW?? WHAT DID I DO WRONG?? ARE YOU PUNISHING ME FOR BEING BAD???”

I listened to Christian songs, I clung unto with dear life to verses my parents shared with me to encourage me: 

For I know the plans I have for you,” declares the Lord , “plans to prosper you and not to harm you, plans to give you hope and a future.

Jeremiah 29:11 NIV

 

 That means, God did not give me CML to punish me, no matter go through, we shouldn’t see it as bad karma or universe hates us, or there is no God. God is good, and God is love. Many times, I would struggle with how if God is good, bad things can happen to a girl who tried her whole childhood to be on her best behaviour, loved God and wasn’t afraid to tell her friends about God and even risked social exclusion. I would cry and cry in my room, the only place I could honestly deal with my situation, and after each time, it was as if invisible arms cradled me close and soaked away all my tears and negative feelings weighing me down. I would feel comforted, and the truth of God’s word would be revealed to my mind, reach deep down into my soul. I was assured, over and over again throughout each consecutive year that anything that happens to us, God will work it out for our good in the end:

And we know [with great confidence] that God [who is deeply concerned about us] causes all things to work together [as a plan] for good for those who love God, to those who are called according to His plan and purpose.

ROMANS 8:28 AMP

I listened to Lynda Randle’s song “God on the mountain” over and over, repeating those words with every shred of faith I had accumulated over the years of my childhood “For the God of the mountain is still God in the valley, when things go wrong, He’ll make them right. And the God of the good times is still God in the bad times, the God of the day is still God in the night.”
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So many Christian songs ministered to me and I played certain tapes from my childhood Kid’s praise and Sunday School sing a long over and over again. There were countless times I felt no one understood, it felt like the end of my life as I knew it. More scientific research on the internet brought more hopelessness as the only cure to this CML (Chronic Myelogenous Leukaemia) was a bone marrow transplant, then again, one might not always survive it with a 50% chance of graft Vs host infection.

When my parents shared with me that my dad’s NGO had arranged a short term trip for the whole family to travel to Thailand for a second opinion, hope rose within me like a sleeping giant. Perhaps these Chinese doctors were wrong….perhaps what I have isn’t as terminal as CML. Even if I did have it, between my parents and two siblings, I should be able to get a genetically matched donor for bone marrow cure right? 

Five suitcases packed, we traveled to Bangkok, Thailand. After meeting a highly recommended doctor in my field, I went through another series of tests and confirmed the initial CML diagnosis. Each member of my family were also tested as potential donors. 

In between waiting for test results, we explored the city around us,and I took comfort in similar cuisine to my motherland of Malaysia, explored night markets and got some beautiful fabrics for wrap skirts. Watched movies back at our room, and tried to browse the net in the internet cafe next door. Parents insisting on a healthier diet, my initial protests aside, I settled in to enjoy their tropical fruit, fruit juices…their fruit selection so similar to my motherland of Malaysia:

The results back, but none of my parents and brothers were a close enough match to be a good donor for a bone marrow transplant. 

How my life was changed forever: CML

It has taken me over 11 years to tie myself down to a chair and attempt to chronicle my journey. Been an sporadic diary keeper throughout my early teen life, pausing every now and then to jot down meaningful events in my globetrotter childhood, one sole event pushed me into the healing world of words, ink, pen and paper.

My procrastinating excuses, delay tactics and seemingly justifiable reasons for my caution of sharing my personal life on such a public platform aside, it seems this cartoon graphic has finally given me the inspiration I need to release this story. My mouth twists with a sad, humorous smile at the comparison between the lightheartedness of the cartoon and how the depiction of the cancer really turned my life inside out.

This is my story:

The main feature that had defined my childhood and teenage years was our family moving countries every 5 years on average. My dad’s work with an NGO provided an exposure for my young mind to the poverty and health needs of the developing world as I paid attention to experiences narrated over a restaurant table between my dad and friends and colleagues. Cushioned from this reality, in subsidized housing and top schools in the country post, means my younger self was somewhat protected from the slums we passed everyday in India, to the war-ravished buildings around us in Rwanda, and the SARS outbreak in China. My empathetic growing heart though registered everything keenly and I concluded my most tangible way to help was becoming the kind of NGO medical doctor that works on mission trips and in free clinics.

My years as a student flew by, studying as hard as I can, not joining in the usual teenager shenanigans and distractions. Made it into the International Baccalaureate program, the 2 years flew by in a busy schedule of Model United Nations (MUN) conferences and trips; service oriented projects, visits and fundraisers as well as academic workload of papers, G4 projects, and the big extended essay (research paper).

 

 

In February of the year I was to graduate high school, the crossroads into really beginning my life, I came down with food poisoning and a daily increasing pain in my left side. Refusing to stay at home, and carrying around bottles of water and banana as my main food substance, I doggedly attended classes and rounded up my academic works.

I endured it for a month, been treated for food poisoning, it turned into constipation and treatment for constipation swung me into an extreme case of diarrhea. The pain was not in my right side, so school nurse ruled out Appendicitis. When the pain in my left side got too much to bear, I would rest for a period or 2 in nurse office, waiting for the tablets of Ibuprofen to kick in and grant me even if just a little relief.

By middle of March, I had handed in my paperwork, my 150 CAS (creativity, action, service) hours logged in, G4 projects done, philosophy and extended essay handed in. I learned from this experience how one’s mind and will can accomplish unimaginable things, pushing the body beyond normal physical endurance.

 

On the night of which I had handed in my medical school application at school that day, I gave in to the pain, crawling on my knees to meet my parents in the living room, I admitted it was time to try the local Beijing teaching hospital.

My dad drove me and my mum to the emergency room and the rest of the night passed in a blur of semi-consciousness and I was roused only to give blood and poo samples. My dad had to go home to my brothers, while my mum stayed with me following up on tests and the lab results, her hushed conversation with the doctors in Mandarin Chinese filtering in brief moments of consciousness.

In the morning, I could tell the news was bad as my mum and doctors kept dodging my questions or downplaying their answers. Two days later, they finally let on that due to my abnormally inflated white blood cell count of 255,000, the doctor suspected it was Leukemia and that it was similar to what my cousin had. All I could process was that my cousin had Leukemia for several years in his teens and died a year ago at 18 years of age. Not willing to process that bit of information and how it would apply to me, I tried to show interest and ask what needs to be done.

A bone marrow test later brought the doctor’s verdict and the diagnosis that still affects our lives 11 years later: Chronic Myelogenous Leukemia (CML).  An excruciatingly painful locally anesthetized bone marrow extraction had confirmed the CML diagnosis.

My first thought: what about sitting the final exam needed to get my IB diploma? What about the rest of my school year? Graduation? Most importantly…what about medical school??? I was too young to be living with a death sentence. I know how poor my cousin’s quality of life had been while living with the diagnosis. I still had so many hopes, and dreams. I wished I could save the world, but I could only impact one life at a time. Enough about saving the world….what about saving myself? Being the optimistic smiling child, I looked for the bright side of everything. Perhaps my type of Leukemia was somehow better than my cousin. Mummy, what type of diagnosis did my cousin have?

Having no time at all to deal with my diagnosis, I did my best not to throw tantrums while stuck in the hospital. From my endless questions to the doctors and nurses, it seemed I wouldn’t be out anytime too soon. My mum, who had always been the softer parent, and whom I had taken for granted before, now surprised me with such strength, resiliency and endurance as she went up and down the big hospital looking for delicious food to tempt my appetite, then going back to those stores to get my favorite century egg rice porridge (皮蛋瘦肉粥).

With my 24/7 drips of all the nutrients my body had lost over the past month, I was soon springing on my feet, feeling energetic and restrained within the four walls of my room. I was eager to be out of the hospital and feel more “normal” at home. Borrowing another patient’s laptop, I eagerly logged into my mail, waiting for a response from any of the schools I had applied to. I got a positive reply a week later: I had gotten accepted! Hope rushing into me, I talked to my parents and they asked me to email them about my medical condition and if they can defer my admission. The response was heartwarming about me taking care of my health first, there will be a space waiting for me after my treatment. I dared not to think how long that may be…

Two weeks later after I was first admitted, after beginning treatment of hydroxy urea and other tablets (I stopped counting at 25 tablets…), I was finally released to go home.

Once home, I had access to the internet and did some research. Ignorance about CML made it into a killer beast and I know that knowledge is power. Perhaps I can empower my naive optimism into something more realistic.

At home, I was fussed over by my mum, and since my immune system was low and at risk, was made to stay indoors as much as possible, with restricted visitors. Frequent hospital visits, daily pill popping, hand sanitizers, face masks and changes to my diet eventually became the new normal. I was later switched to a new drug called Gleevec (imatinib mesylate).

Glivec_400mg

The whole family had to go on a trip to Thailand for a second diagnosis, to confirm the validity of the initial diagnosis. The only cure for CML is a bone marrow transplant from a compatible donor, and after which, chances are the body may reject the bone marrow. I held on to this thin hope, we packed five suitcases in hopes one of my family members would qualify to be my donor. I would have my family around me while I go through my transplant and recovery.

Story to be continued…