How my life was changed forever: CML

Chronic-Myelogenous-Leukemia Cartoon

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…