I really thought it's just a carpal tunnel syndrome.
The first time I noticed it in 2015, and it was insignificant, but the sensation comes and goes. It was on my right wrist. The first thing that came to my mind back then is to see an orthopaedic doctor. When the doctor examined my hand, he told my parents and me that I have mass growth in the pain area. He immediately scheduled me for an MRI.
After the MRI results came in, the doctor told my parents first. When they got out of the doctor's room, I immediately know from their faces that it wasn't going to be good news. it was a tumour. "ok, I hope its benign tumour, it's ok, we can have a surgery to have it taken out." I said it to myself.
But I have fibrosarcoma. And it's malignant.
Let me elaborate this, fibrosarcoma happens when the body's fibroblasts, (tendons that connect muscles to bones that made up of fibrous tissue) lose control and multiply excessively.
Fibrosarcoma takes a long time to appear. But when they do appear, it's a painful swelling in various parts of the body, and especially the limbs.
My fibrosarcoma did not occur on my wrist bone, but it affects the nearby fibrous tissue around my wrist and my lower hand. My dad and I rushed to schedule with an oncology doctor in the government hospital specialised for cancer treatment in Indonesia. This doctor that we visited in the hospital insisted that he needs to amputate my wrist and he stressed that there are no two ways about it.
I was devastated, but not as much as my dad. I remember he was crying his gut out on our living room floor.
I was uncomfortable with my current doctor's approach to my case. I know that he considered professional in his field of work, but he sometimes made condescending remarks, and amputation seems like the only choice that I need to do, and I need to do it on the spot. We have decided not to do the procedure. We look for a second opinion. I paid a visit to another doctor that treated my cousin, who also had cancer. Radiotherapy was chosen so I can keep all my limbs intact.
I began radiotherapy in 2016. I had 25 times of radiotherapy session, and that is the maximum treatment a person can receive for their whole life.
As with systemic radiation, my body fluids, such as urine, sweat, and saliva, will give off radiation for a while. For a year, I am not allowed to be near small children.
In that same year, my dad passed away.
After the treatment, everything goes back to normal. I got healthier, and there are no signs of pain in my wrist. I got accepted as a visual merchandiser for a multi-national retail company, and I am so excited to be able to live a healthy and regain my normal life.
I was delighted to work in a profession that has always been dreaming of. But being in fashion business requires a lot of energy. Sometimes I forget to eat lunch. and sometimes I work long hours. But I was happy doing it. Little that I know, my fibrosarcoma slowly waking up from its long hibernation as my health starts declining, and starts to gnawing my affected area.
One morning in March 2018, I felt incredibly sick, I can't go to work on that particular day. I rushed to a private hospital, turns out my haemoglobin blood test came out 8 when the average person haemoglobin is 12. I kept working despite my condition.
In October they suggested me to do a flap surgery where the tumour tissue lifted from donor site which is taken from my inner thigh skin tissue and moved to the area of my wrist with an intact blood supply.
I know something went downhill from there, cause at the operating table they didn't let me do the flap surgery. When the team of doctors saw my whole condition, they think the whole concept won't work because they need to remove all the tissue, because of the tissue on my right hand, definitely not benign.
The team of doctor insisted me to do the full amputation on my hand (and they always have been suggesting the same thing). But my mom wasn't ready to give her approval.
It became a metastasis sarcoma, and it was spreading fast through my right arm. At one point I can't take it anymore, I asked my mom before I leave for a regular check-up to "bring my blanket and bolster" I have had a feeling that this check-up will take more time than the usual one. My gut was right, my haemoglobin was already as low as 4.2, and I need to do something with my right hand. I have always been ready, I just need to convince my mother to let me have that procedure.
The doctor tried his absolute best to damper the news but I know if I didn't amputate my right hand, it might spread viciously to other parts of my body because it's on the state of vigorous. My right hand was on the state of functioning anymore, and I want to get better.
"My dear, pray for the best, ok?" said Dr Dodi.
It’s been a week since I had amputated my right hand. Sometimes I still feel the sensation from my amputated hand as if it's still there. There's actually a term for that, called phantom limb, a sensation as if my amputated limb is still attached to my body.
Now I feel a lot better, I can go out and meet my friends. I need to get used to being an amputee, but I know there are far better things ahead of me than any I leave behind. I want to go back to work. I want to live again.
And if being an amputee is the price to live my life fully, that's a risk I am willing to take.
My name is Trisha, and I would like to raise awareness about fibrosarcoma, cancer that is rare occurring in adult life, but when it happens, it highly aggressive. I will always be in a perfect shape, amputated or not, because I know I am whole, inside and out. And you know what's best for yourself too.
-A story about Trisha Dhamono, cancer survivor who lives in Indonesia. Written by Apsy Soerjodibroto for #PerempuanSeries and The People of Asia.