When we allow our Health Challenges to Define us

Since I was diagnosed with Chronic Myelogenous #Leukemia #CML when I was 17 years old, over a decade ago, I remember my life seemed to revolve around hospital appointments, blood tests, scans, bone marrow aspirations. I had to consciously plan my day so that I have at least one full meal and ensure a bottle of water and chemotherapy (#gleevec) tablets are packed in my bag.

Where before I was an over-achieving student, my body now slowed me down. You know those all nighters spent cramming for an exam, or writing that paper, or preparing a presentation? From then on, I would be plagued by constant fatigue, flu/cough and struggling with chemo side effects like vomiting and diarrhea.

To everyone else, I maintained my bubbly, cheerful, friendly, energetic persona but now I was coming late to class, begging lecturers for extensions on deadlines and so forth. And my once forbearing and diplomatic persona was not so lenient anymore.

I wasn’t the typical #cancer patient. I wasn’t deathly pale (though I was far lighter skinned compared to before my diagnosis and chemo treatment) and sported a full head of raven black hair. Plus I didn’t have to go to the hospital for chemo treatments when mine was concealed conveniently in my bag to take “on-the-go”. I looked just like every other student. I remember one lecturer going so far as to say I was using my illness as an excuse. Hmm. I will chalk that one up to ignorance. Then came another mid-semester drop out. Each time it got harder and harder to return back to my studies.

I am sure you can relate to how such physical and health limitations begin to define us in such a permanent way. We don’t even realize when it becomes a part of who we are. I had gotten admitted to medical school just after I was hospitalized the first time I was diagnosed. I got to defer admission to medical school, but after my health took a hit my first year there, my doctor didn’t allow me to resume.

I relocated closer to my parents and would still pursue my dreams of being an emergency/disaster response doctor for several years to come in one pre-med course after another. Each time, I would transfer over to what I thought was a less intensive course.

I had to look for another degree to graduate with. It took me 9 years from when I graduated high school to obtain my college (university) degree. I had to leave behind my career dream a long time ago. I graduated with a management degree in Human Resource Management

Now, even in #remission, I’m afraid to push myself so I don’t break down. I can’t seem to find something to be passionate about, due to this deep-seated fear that it will not work out. I keep expecting one bad break after another and when good things happen, I am beyond grateful.

One thing I am free from however is living life as a if I am a ticking time bomb. This “tip-toe” kind of living when one believes they are living on borrowed time. When I got diagnosed, I was acutely aware that my cousin suffered from #leukemia for several years before dying at age 18. For so long I went through life one day at a time. I couldn’t even picture myself graduating, not to talk of getting married.

When I finally graduated university, after several interruptions and relocations, it was a huge breakthrough and victory God gave me as this wonderful man blindsided me with a ring on my finger. I didn’t even know where to begin wedding planning because I never spent a moment browsing social media for my dream wedding gown or wedding gown receptions. Time to take a leap of faith.

I have had amazing breakthroughs (miracle conception, pregnancy & journey into motherhood) since getting married and mentally am working through and moving beyond all that now. But I wanted to write down and attempt to capture how totally hopeless life can seem, or how one’s diagnosis can colour everything about one’s life if they choose not to actively take charge of their diagnosis and more importantly their emotional and mental state of mind.

Instead of letting our health challenges define us, or be the boss of us, why don’t we take charge? Arm ourselves with information, seek help, get proactive in selecting a team to help you overcome. It is said what doesn’t kill you only makes you stronger. But even if it purportedly will kill you, will it hurt to go down with a fight and a champion’s smile on your face? Better yet, why not be determined to beat the odds and be part of the 0.01% that do survive?! Never underestimate the potent value of just a little Faith

Are you struggling with any issue, not something as ominous as cancer but issues like asthma, body image issues, eating disorders, a bad wrist/back, anything that serves as a limitation? Are you so nervous to talk with people that it is really affecting your mannerisms and happiness? Even if you have technically or physically gotten over an illness, are there still lingering issues affecting other areas of your life? Please I would love to hear your own story and where you are at the moment in your journey.

P.s. about The coffee pictures in this post … 😀 Maybe I just want you to remember that cup of coffee you left sitting on your table and come sit and read my thoughts. Come have a little chat with me

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…