I grew more yellow each day. I took the pills given to me by my doctor. His advice of going back to Penang rung in my head, but I couldn’t make myself go.
Everything seemed so heavy. I started to need an oxygen tank for breathing every few hours. I didn’t stop coughing.
Of course because I live in Indonesia, some people couldn’t help themselves by saying things like “maybe she has some sort of demons or black spirits living in her”. How could I not be affected by these kind of comments when you feel like shit most of the time, couldn’t breathe properly and constantly coughing day and night. Their comments made me more frustrated with my life.
One day not only was I yellow, I started to get swollen. It was hard for me to move and my hands and feet had gone swollen twice their usual size. When I took a shower, every trickle of the water made my skin prickle, like there were hundreds of pins on my skin instead of fresh water.
I couldn’t walk. I couldn’t breathe. I passed my 27th birthday without feeling happy or festive. Christmas went by just like any other day.
I remember one of my best friends and her now husband came to visit me during the Christmas holidays, and I saw that look on her face. Pity. It was one of those looks that I didn’t want to see. I know they couldn’t help it, but it also made me feel like I wasn’t the person that I used to be. I was weak, and people felt sorry for me.
By January 2015, I had to be rushed yet again to the emergency of another hospital in town because my swollen body didn’t get better and it was almost impossible for me to breathe without the help of an oxygen tank.
What kind of life is this?
When I was in the hospital they told me it was excessive water that dominated my body. It had even gone to my lungs thus preventing me from breathing properly.
They saw my tumour and decided that I should get that figured out. A friend of my mum who had lymphoma successfully did her treatment in this hospital. I felt extremely hopeful. Maybe I could do my treatment here in Jogja too, and it would be ok.
However it wasn’t that simple. With my current situation and my high bilirubin (which was the cause of my yellowness/jaundice) meant that I couldn’t possibly get any chemotherapy anytime soon because it meant there was something wrong with my liver.
Plus they didn’t exactly know what type of lymphoma I had, obviously I needed another biopsy (though at that time the doctor felt confident that he could just “guess” what kind of lymphoma I had based on the two not-so-sure biopsy results).
I stayed at the hospital for two weeks. I lost a lot of weight, from my usual 62kg to 46kg. I was given some pills, which had a high dose of steroids as I later found out, as to “fix” my liver.
The plan was to go home, took the steroids, hopefully the jaundice would reside and once I’ve reached a suitable number of bilirubin, I could start my chemotherapy and get better.
How I wish it was that simple!