Late last year my worst fears were confirmed when I thought I had surpassed my remission period - going 10 years strong since I had first survived malignant soft tissue sarcoma - when suddenly my world came hurling to a halt when what I thought was an innocuous sebaceous cyst turned out to be a return of the dreaded rare cancer. I was blessed enough to get an early detection and the three tumours shaped in a triangular form under the skin of my neck were still in early stages. My doctors thought I would successfully shrink them down to a benign level but as my radiotherapy courses proved ineffective over the coming months I was devastated when I received the news that not only had the tumours not responded to treatment, but they had also metastasised to my lymph nodes, rendering me to Stage 3 high grade Myxoid Liposarcoma. Unfortunately this is one of the rarest subtypes of not only sarcoma, but cancers in general, in the whole world. The fact that my secondary diagnosis and recurrence of this aggressive disease at the age of 27 had come back with a vengeance initially left little hope for my survival rate. Combined with the fact that my mother had died at the young age of 41 of cancer and I had tested positive to the BRCA gene in my young teen years always created looming doubts over my genetic flaws, and this was compounded by a late diagnosis of the autoimmune disease that made me a celiac, which I had unfortunately lived with my whole life without proper management or treatment, ultimately compromising my immunity. I was given a prognosis of a 33% survival rate with anywhere from 12-18 months to live. I had to accept my fate and hope for a comfortable departure from my mortal coil.
Call it divine intervention or being touched by an angel or watched over by my mother in heaven, or more realistically an incredibly impassioned oncologist, but I was accepted into a clinical trial beginning this year in late August at the world's leading sarcoma centre in Texas where they would not only offer me surgery from the world's leading specialist surgeons but also an holistic treatment from A-Z involving revolutionary proton chemotherapy, reconstructive plastic surgery, immunotherapy from the brain of a man who made Time Magazine's 100 Most Influential People, counselling and planning, standard chemotherapy practices and medications that are not only not available in my country here in Australia but unfathomably attainable due to exorbitant costs and government regulations. Suddenly my survival rate could potentially sky rocket to an 84% success rate with a clear 5 year period without reoccurrence of symptoms.
So I decided to make my private struggle public, to boldly ask for help as I try my hardest to raise awareness of this debilitating illness. The one thing I have learnt over this tumultuous 12 months is that I should have asked for help a long time ago. That there is no shame in it and that despite a person's trauma or their experiences of life, people are inherently kind and that love can heal anything. So I'm here today all by myself and unafraid to ask you to contribute and be a part of Jie's Journey.
I am exceedingly lucky to have gained access to a clinical trial in a leading program whereby my preliminary costs will only be around $30k AUD for the treatments and surgery and an additional $10k for medications and transport.