I am home safe and sound from 9 days trip to Barcelona. I thank my Lord Jesus for the strength and my loving husband for took good care of me travelling BCN. I enjoyed eating delicious food and exploring the city. Although it‘s winter but the sun shine and warm, and boost my mood. Looked at the sea and people relaxing on the beach makes my heart smile. Must be great to be here in summer.
::: STAYED IN THE HOSPITAL FOR 6 WEEKS
I flashback my summer this year in Germany. 1 June 2017, I was transferred with ambulance from Frankfurt Klinikum to Karlsruhe Klinikum, where I will get my radiotherapy treatment. The biopsy report from Frankfurt confirmed Pontine Glioblastoma (DIPG) Grade IV.
DIPG have poor outcomes, with a median survival of 9-12 months and 2-year overall survival rate of less than 10%. It is inoperable. Radiotherapy (RT) is the only temporarily effective treatment.
In June till mid July 2017, I went through radiotherapy. Prior to my treatment, doctor custom-made a mask fit around my face and head. RT was given daily, monday through friday, for about 6 weeks, with weekend rest. I am scheduled RT everyday on 8 am in the morning, so my husband or a nurse bring me with wheelchair to the RT room and afterward bring me back to my ward.
During RT, the therapist staffs helped positioning me on bed and placed mask on covering my face. It was uncomfortably tight, but I can breath and hear. I have to lie still for around 10 minutes. High dose of corticosteroid was administered to control edema (brain swelling).
::: EFFECTS OF RADIOTHERAPY
It was a targeted RT. RT cause some hair loss. I had 3 bald spots on the back of my head. But it grows back after the RT ends. Chemo did worse.
Side effects from RT I experienced was sleepiness, eyes and skin sensitivity to sun (I was afraid of sunlight, felt like vampire), skin sensitivity to winds. I developed other symptoms such as temperature sensitivity, which I wore winter clothes and still feel cold in hot summer, I lost leg muscles, and eye movement worsen. But doctor said these was the side effects from the steroid and the tumor growth.
The positive affects of RT on me was I can swallow again, and I can move and direct my left hand. Before RT, after biopsy I lost my ability to swallow, and had deficit motor ability with my left side of my body. When doctor asked me to touch my eye, nose and ear with my left hand, I missed. I can not differentiated a needle or a pen stroking my left feet.
Two weeks after receiving RT, or one week before my 36th birthday, on Saturday mid June, I was able to swallow again. That early morning, 4 am as usual I woke up crying, not because of fear nor sad, but I was so touched by the love of God and family and friends. Later that day amazingly I can swallow again, start cautiously then got better like back to normal. Both doctors and nurses was amazed with this news. Because I can swallow, I start my oral chemotherapy, Temodal tablet everyday for 4 weeks.
Moreover, the tumor was shrinking, believed prolong my survival time. However during the RT I was suffering from the corticosteroid side effects. Affecting my consciousness.
::: I LISTEN TO MY BODY
I did not completed the whole course. I skipped the last two RT. Reason was I listened to my body and soul instead what the so called “golden standard”. My body that time screamed and refused the last 2 times RT and last 1 week of chemo.
After that, doctor discharged me home from the klinikum, with high dose corticosteroid tapered gradually. I was in a bad shape, I can not stand up alone, I slept a lot, I can not walk without rollator, I dealt with temperature sensitivity where I felt cold all the time although it was so hot, etc. My parents flew back to Indonesia, thankfully my 2 best friend, Kayan from Beijing and Ashlee from Singapore came and took care of me.
::: TUMOR IS BACK PROGRESSING
I got better in September and October, but early November MRI showed tumor is growing again. Doctor stopped the temodal Chemo. She said survival in months. I was depressed with the news, but after few days I surrendered this matters to God alone. I talked through it with my supportive husband who never fail showing me love. I felt peace.
This Wednesday, I will meet the doctor to discuss new treatment. I hope it works.