4
February
#WorldCancerDay
#WeCanICan

Simon, Canada

My Cancer Story (from 2001 to now) 

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It was 2001 winter when I was first diagnosed with osteosarcoma, a type of bone cancer. I was only in grade 3, enjoying my winter break with my friends in South Korea. Like usual, I was playing tag with my friends with rollerblades on. I fell down on the ground and for some reason I knew something was not right. My limb was severely swollen, which scared all of my friends. When I went to the hospital the next day with my mom piggybacking me, the physician there told me to go to a bigger institutional hospital so that I can get a better diagnosis. Then it all went downhill after. MRI and autopsy revealed malignant bone cancer.

Everything went downhill. It was not just me who was affected. My whole family's life was changed. My mom had to be with me 24hrs in the hospital. My dad had to give up his job so he can visit frequently to help my mom and supply food and other. My sister had to move their high school closer to my hospital as we all moved to an apartment close to my hospital. Back in 2001, research was not done well enough with cancer and everything was quite mediochre. More importantly, they had no idea how to treat a pediatric patient, so they just treated me as a "little adult". As a result, I had experienced almost all the side effects from the drugs they put me on. And the worst of all was the hostility of doctors and nurses. They hated the fact that I cried too often and was not able to tolerate pain as well as an adult. They often yelled at me when they had to wrestle with me to hook up an IV on me because they had to try at least four times to find the vein (and crying made it worse). Chemo port was just recently developed, and fortunately, after I got my chemo port, that problem was gone except with blood testing.

I was not strong enough to withstand all that strong chemotherapy and had to be withdrawn after the 5th cycle with extreme neutropenia, thrombocytopenia, and anemia. Regular routine was 6 cycle. Luckily, in my case, cancer did not metastasized. However, this stubborn infection occurred to the tibia, where they removed the tumor and placed the bone back in. I have underwent surgery about every two weeks for a debridement. Yet, they just came back. One time, my body temperature soared up to 40 degrees celsius because the infection was just so resistant and severe. They had to put me on all different antibiotics but they all failed. After about 10 operations, they had to finally remove the bone completely and fill the space with cement with metal rods.

My family was deeply worried about me being able to go back to the school. I already missed one and a half years of my elementary schooling. I had to use a brace plus two crutches at the same time and I was not allowed to fall down, as my bone was extremely fragile. It took me forever to climb up or down the stairs. I now had to live with a disability. In that time, South Korea had almost no support for disabled people, or students. It was common to see disabled students being bullied and treated harshly by the school. My parents didn't want to send me to the special needs school because I did not have any problems with cognitive functions. I was as smart as other students, was as much capable of learning in school. That's when they decided to immigrate to Canada.

My first impression of Canada when I arrived at the Richmond airport was clean and friendly. Everyone seemed so kind and no one stared at me for using crutches. In Korea, there were always that pity looks coming from older adults and teasing comments from younger people. Someone teased me saying "you stupid bald" which hurt me quite much and made me very self conscious.

It seemed like Canada was about to give us a new hope and have all that agony put aside. However, I was too excited when we first moved into a house, that I didn't see the step connecting to the patio. I lost my balance and fell. At the moment I fell down, we all knew that something went horribly wrong because I couldn't get up. All that effort, pain and agony that I had to go through just to be able to walk again with my crutches became nothing. I was no longer able to walk again. I was trapped in the house and if I wanted to move around, I could only slide myself from place to place. So the furthest I was able to go was from the living room to the kitchen. The house was a two storey building yet I actually never had a chance to go downstairs. Going outside was not an option. It took me one year to see what is outside of my house. The only thing I could really do to kill time was reading books or playing computer games on the laptop. Even just observing the birds or tree through the tiny window in the living room was so interesting to me. But then for my family, they were depressed really badly, especially my mom. This country was completely new to them and they could not speak a single word in English. They came here with a great hope and it was all crushed. To make the matter worse, Vancouver was covered with rain all day long.

With the help from the pastor of my local church, I was referred to Dr. Ken Brown at the BC Children's Hospital after an initial visit to a GP. We needed a translator because no one could speak English back then. After a thorough examination, it was a nervous verdict time. We all kind of knew that something was wrong and it wouldn't be a good result, but when we were faced with reality, we couldn't accept it. The metal rod protruded to my knee and tore the growth plate. The metal rod was bent inside as well. During that one year of waiting, my left and right leg already had quite a few height differences. So ilizarov was mandatory as well as a new surgery to replace the rod and the cement so that I can walk again. We kept asking the translator if this was true. We broke into tears in that medical office so bad that Dr. Brown didn't know what to do. We just met Dr. Brown for the first time and he probably never had any patient reacting this way. He told us to go back home and come back when we are more comfortable and have made up our mind.

Just when we thought all that painful time was passed and that only good things was laid upon us, this happened to us. We knew no one in Canada and didn't really know what to do. We had no choice but to trust Dr. Brown and follow what he can do for me. It was 2003 when I first underwent the surgery to get the ilizarov and then about two months later when I got the fibulla graft transplant which took 16 hours of operation time involving a plastic surgeon, neurologist, and a muscoskeletal surgeon, Dr. Brown. Dr. Brown is a brilliant surgeon and he allowed me to finally have a bone in the empty place of my left shin area. But as this surgery was so complicated, certain nerve damage was inevitable and I lost the nerves in my right leg causing my big toe to drop down and have increased muscle tone in the thigh area.

Now, to talk about my school life, obviously, I was not fitting in well. I was scared. I was scared to go to school because I was worried about someone knocking me to the ground. I was scared that students may bully me. I was scared that I couldn't speak English. 

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I was not fitting well also because I hated school. I hated the fact that I had to stay in the room when all the other students could play outside. I hated the fact that I had to be left behind in the classroom alone during the recess time, lunch time, and PE time. They were supposed to be student's favourite time but to me it was the worst time.

Dr. Brown however, was worried and he pushed me to attend the school. He allowed me to be connected with a social worker, and a psychiatrist who helped me so much to fit in the school. With their help, I was slowly beginning to find school as pleasant. It felt like I was finally settling in. Just when everything seemed to be going well, trouble came again.

Sadly, again, peace was not something I was allowed to have. We had to move to Chilliwack and all the friends who I was finally able to make, and the school that I finally felt I fit in had to be left behind and move on to a completely different environment. Here, everything was much worse. In school, my teacher was not willing to accommodate my needs and neglected me. She yelled at me for not understanding what she was saying in English and didn't bother to accommodate me to participate in PE classes. In Burnaby, my teacher brought me to the field and allowed me to watch while sitting on the chair or do a referee. But here, she just left me in the empty class room. Actually, she was quite famous for being such a horrible person that everyone in the school kind of hated her. She was also a vice principal and held a lot of authority. I was an outcast once again. I wanted to fit in. But to fit in, it seemed like I had to play tag with other students. So, what I did was that I started to play tag with my crutches. I played tag with other students during the rainy day and slipped on the grass. Ambulance had to be called and a trip to BC Children's hospital on the ambulance. Good news was that I didn't break my bone. Bad news was that I have fractured the bone that Dr. Brown and other specialist took 16 hours to implant. And to make it worse, Dr. Brown was away on his conference meeting. I told the other physician that I will wait for Dr. Brown and don't want anyone else to do the surgery. When he arrived, he was very upset and shocked at the same time. He was like "why in the world would you play a tag in a rainy day?" as if I was crazy.

After another surgery, another tedious physiotherapy waited for me again and after the rehab, I was able to walk again with pins placed in to support the bone.

When I went into the middle school, it was then when I first started to experience racism and bullying. Students were going through puberty and I was the weird kid in the school. I was fat (due to inability to exercise), Asian, couldn't speak English, was wearing weird looking brace on left leg, limping, holding crutches, and didn't do well in the courses except math, which didn't require English skills. In the corridor, people will throw coins at me or yell offensive words at me. They would also treat me as if I was someone with a mental disability.

Even with all these horrible things I have received, one dream that I kept in me was that I wanted to help others who might be in the same situation as I am. I wanted to become someone who can help the people with disability and people living life after the cancer. I held this dream so tightly and decided that I would devote myself to a health care field. 

Because there was no way I could be an athlete, I decided that knowledge was the only tool that I can use to help others. I started to study really hard starting in high school and in my undergrad. My interest in science also grew tremendously. 

With the hard work of my two years of undergrad, I was able to get mostly A+s and be accepted into the pharmacy program at UBC. I dreamt of becoming a physician, but then my parents were worried that my body was not strong enough to withstand that much stress. Though I was declared cancer free after 10 years, I had lot of different complications that came from a weak immune system.

When I got into UBC, it was first time I got to live by my self, without my family support. However, it was also first time I experienced depression as a side effect of cancer. It seemed like I was the weakest one, and did was not fit in the school because I was weak. Everyone seemed to be so strong with a lot of muscle whereas I had a hard time just walking to the class in this large campus. It also seemed like everyone was involved in sports or bodybuilding. For me that was a luxury I could not afford. I started to feel very self conscious and negative about myself. I was not able to attend classes anymore because I was scared of people judging me (though they were not judging me). It was to the point when I heard someone laughing, I felt like they were laughing at me. 

My class marks dropped significantly. My average before pharmacy was 88% but my first year in pharmacy average was 65%. I got really unhealthy too. I developed anxiety issues, acid reflux, gastritis, and irritable bowel syndrome. I lost my passion in studying. I still had the dream and the wish to help the people fighting illnesses, cancer, yet I had no energy to go on. Consequently, I had to take a second year off. Then it got even worse. I started to doubt myself. I started to think maybe I am not good enough for this. Maybe that I am not smart enough, healthy enough to be here. And then, I started to feel embarrassed for trailing behind. I could not tell my parents because I didn't want to worry them. They had their own trouble that they had to take care of and I felt like I needed to learn how to live my own. Also, it was that time my sister was diagnosed with malignant renal cancer. I lied to them that I was doing well.

After a year off, second year started again, me being not prepared at all. I didn't go to any of the classes like before. As a result, I was not doing well at all. In the mean time, there was a great person I have met in the faculty, who helped me tremendously. It was Dr. Riggs, an ex academic dean of UBC Pharmacy faculty. He understood me deeply and cared about me. It was first time meeting someone in UBC who really genuinely cared about me. Still, it was hard for me to continue on. I was doing really horrible in the school. My health was just continuing to be deteriated and I didn't know how to fight this depression off. Dr. Riggs didn't give up on me and he continued to provide amazing support to me. With his help, I was finally able to pass the second year, barely. However, he retired and was not going to be there to help me in the third year.

Third year started and I felt like I was ready this time. That everything would be different and that I can do this. First week was ok, but the anxiety issue crawled upon me once again, as I was too obssessed with doing really well. Because of the anxiety, I could not get up, or eat. I felt like throwing up every time. I felt my heart racing as exam days came near and I felt horrible inside. I was finally taken to the ER after countless sleepless nights and nausea with massive headache.

I knew I couldn't go on anymore. I knew I had to tell my parents. That's when I called my mother in tears and she flew here the day after.

After my mother came in, I had to ask if I can take a year off again to the academic advisor. I was already given just too many extra opportunities and I just wanted to give up. I was so embarassed to ask this academic a concession again. I felt like a failure. I was deeply worried about my future and didn't know what to do anymore, which didn't help with my anxiety either. Dr. Riggs wasn't here anymore to help me either.

This time, it was Access and Diversity of UBC who helped me to continue on with studying. They allowed me to have one more year of concession, one last time. The program was going to terminate as they changed to Entry to Pharm D now. 

During that year off, I was able to become grateful once again, of my life. My mother was able to show me how I am not really a weak person but a cancer survivor. My family supported me so much.

Moreover, during that time off, I met Dr. Brown. He was no longer working at the BC Children's hospital but I was lucky enough to see him again at a medical clinic as a nurse who worked with Dr. Brown allowed me to connect with him.

After meeting with him, I was connected to all the supports available in Vancouver. I was connected to Dr. Simmons, an oncologist at VGH, who allowed me to meet a counsellor and a dietitian.

I was also able to travel back to Korea and meet my friends who I met in the hospital as they were also treated for the same cancer (bone cancer).

This time, I was truly ready to start a new life again.

I was really determined, and I was back to myself again.

Now, I have finished the first term successfully and am on my way to completing the second term.

Some people ask me are you not embarrassed that you are already two years behind than others and that some people have already become pharmacists when you are only in the third year.

I want to answer to that by saying life is not a speed running but a marathon. As long as I finish my race, I will be happy. I am not going to think too much anymore. Today is what matters to me.

Now, I don't think being a cancer survivor is a handicap anymore. Because I am a cancer survivor, I can relate myself much better than any other healthy, regular health care professional. I have a huge advantage. I can understand so much better than others of what we cancer patients have to go through. I may not be able to enjoy sports, and have limitations but I can do other things that other people can't do either. And I love the fact that as a cancer survivor, I can help the teen cancer fighters. 

My dream still remains the same and I want to help people fighting the cancer. I want to be in part of improving their quality of life. I also want to become a mentor for teens fighting the cancer. I want to be someone who can tell them that there is an end to this dark tunnel, that spring always come after the harsh winter.