Hello friends, I’m still here. Though it’s very hard for me to read and type on my iPhone, but with patience I can do it.
So, I’m very happy to share with you again the thoughts I had lately.🤗
As per today, the COVID-19 pandemic has already affected 213 countries, more than 7.6 million people, and taken more than 400.000 lives.
Even when we’re facing this pandemic together,
there are still terrorism, vandalism, attacks,
extremism, racism, chaos, injustice, abuses, wars, etc.
They kill masses,
they takes away what is sacred to everyone,
they only care about themselves,
yes, our world is that sick, heartless, wicked and cruel.
::: WHEN GOD SAYS YES
Many times God answers my prayers with a firm “yes”.
He just gives me rewards He wishes to give me them.
God said YES to:
October 2016 – I met and fell in love with Tobias. Our relationship flourished so fast.
December 2016- Tobias proposed, I said yes, I will marry you Tobias.
February 2017 – We got my parents blessings to marry. I showed Tobias my hometown Jakarta and Bali. We pre-honeymoon and even bought a wedding painting in a museum in Bali.
March 2017 – I was diagnosed with late stage brainstem cancer shown by MRI in an eye clinic in Karlsruhe. I told Tobias to cancel our wedding, but he insisted we get married faster.
April 2017 – We got married in a local registry office. It was the best thing that happened to me in my life. However, later that day, a doctor from Tübingen Hospital called and told me that the PET Scan showed high grade DIPG.
May 2017 – I got a morning slot to a robotic stereotactic biopsy in Frankfurt, I survived 6 hours of biopsy. It confirmed DIPG grade IV WHO with prognosis max. 2 years.
May-July 2017: My parents were in Germany for 2 months looking after me after biopsy. I was hospitalized for radiation. Tobias visited me everyday before and after his work.
June 2017 – I gained back my swallowing ability. I could chew and drink and swallowed again just a week before my 36th birthday. For weeks I wished to eat Nussschnecke (a nut pastry) and drink Earl Grey tea for my birthday. My wish came true.
July – August 2017 – I had Kayan from Hongkong and Ashlee from Singapore came to Germany and they were sustained me physically for 2-4 weeks after I was back home from hospital.
November 2017 – I flew to Barcelona a lot from November 2017 – November 2019. Tobias had a lot of businesses trips in Barcelona. I love it.
December 2017 – We went to Aarhus Denmark 🇩🇰 and spent Christmas with Tobias’ brothers families.
April 2018 – We celebrated our 1st wedding anniversary in Rome. We did sightseeing a lot, we ate Italian food a lot. It was wonderful.
June 2018-November 2018 – Tobias rode me with his bike to Eduglobal (German language school) every morning. I had class from 8 am to 12:30 pm. After quick lunch, usually I grabbed a bakery, a tuna wrap or a sandwich, I went to library and studied there. I took the exams and got certified.
August 2018 – We went to China, met my parents and my brother’s family who flew in from Jakarta, and showed Tobias Hongkong and Shenzhen where I accomplished my university degree, and we spent time in Beijing where I had lived and worked for 9 years. China impressed Tobias very much.
December 2018 – The tumor was progressing. I had the second round of radiotherapy, Christmas 2018 and New Year 2019 we were at home. Tobias’ brothers visited us.
January 2019 – I received a New Year gift from Tobias, a website, TITIEN.DE 😊
January 2019 to May 2020 – I received Avastin. Fortunately, my health insurance was finally willing to cover it for my compassionate treatment (after we fought for quite some time with them).
April 2019 – We celebrated our 2nd wedding anniversary in Vienna and Bratislava. First time for me to be there.
2016 – 2019: I traveled a lot and accompanied Tobias on his businesses trips around Europe. Both in Germany and EU countries. He always brought me with him. I love it.
December 2019 – We went to Seoul. We met my parents again who flew in from Jakarta and we met the Korean family of my brother. We celebrated Christmas 2019 and New Year 2020 there.
February 2020 – I went to Israel 🇮🇱 . It’s not easy for Indonesians to enter Israel for solo traveling, I got my visa from Germany, and I had the chance to visit Jerusalem and Tel Aviv. I had the best hummus in the world.
March 2020 – Tobias stayed and worked from home, and I started deteriorating.
I have written and shared my stories, to my surprise I have written 126 articles. I made friends with you. I have received encouragement and uplifting comments from you both on my Facebook page DIPG Online and on my website titien.de.
I was loved unconditionally by Tobias, we showed affection all the time.
Tobias and I laughed everyday, with our stupid jokes and invented words.
I had harvested 2 years of Piri-piri chilies 🌶 .
I had Paprika plants growing twice out from my kitchen sink. We grew and ate the single fruit it produced.
I had black tits, blue tits, sparrows, and black birds visiting and jumping everywhere on my balcony and cheering me up.
I had family who video called me everyday. I had Kayan and Ashlee who video call me every other day. I had a prayer group on Wechat.
I have few friends in Germany. Lena, Katinka, Ewelina, Klaudia, Tobias’s friends who become my friends. They all are so lovely and supportive.
By His graces, I helped the needy and the poor with donations and with organising two charity projects to provide rural Indonesian school kids with shoes.
I experienced Jesus in my daily life. He’s real.
It’s very obvious,
God revealed Himself in my suffering.
He said so many YES,
He gave me so many promises.
He made my faith strong.
He showed me that I belong to Him.
He set the timing right, and He said go.
I was fruitful, constructive, happy, living to the fullest,
He said YES.
::: WHEN GOD SAYS NO
But, God says NO too.
It’s a bitter pill to swallow,
it ultimately lead me to heartbreak and disappointment,
confusion and anger.
I had a miscarriage in April 2017.
I read the news on Facebook everyday that another little child was diagnosed with DIPG.
I read the news on Facebook that more parents lost their young child to DIPG.
I read the news on Facebook that another teenager lost their life to DIPG.
I lost my members of the DIPG Adult Facebook Group to DIPG.
Another child lost their dad or mom to DIPG.
I witnessed my friends who learned painfully that they cannot have kids,
although they are trying for years with many treatments.
I watched my friend suffer and get cheated on by her husband.
I watched my friend who is a tourist translator lose his jobs and income during the pandemic.
I watched my friends who are musicians are now losing their jobs because of the pandemic and struggle providing food for their families.
I watched my friend in her mid-30s who suddenly got diagnosed with 2nd degree breast cancer.
I watched my friend in Seoul, a young mom, with an 8 months old baby boy who now suddenly deals with 3rd degree breast cancer.
I witnessed my acquaintance lose his family, friends, and his good career because of alcohol addiction.
I watched a couple of my friends, being depressed and unhappy in their early 40s, waiting to end their singleness, to find someone and get married. Not happening for years.
Three of my friends have sons with autism. They can’t speaks. So many treatments over the years, which requires my friends’ patients and time.
I deal with discomfort and suffer each morning.
I am consuming high doses of cortisone. In the last two months, I increased dexamethasone from 2 mg to 20 mg.
I fell a few times in my house.
There are unfinished dreams,
such as making friends with refugees, disabled peoples, elderly people, etc.
I don’t know why my prayers remain unanswered.
Why He says NO.
I can’t comprehend.
one thing that I learned,
maybe we are just not gonna get the answer until we get to heaven,
but until then,
I don’t want you and me to live in despair,
I want us to stay happy and grateful,
there are things we cannot change,
there are things we don’t understand why God says no,
until we get to the eternity.
although He says NO,
trust and know this,
God loves you and me.
Check this out 👍😊
“casting all your anxieties on him, because he cares for you.”
1 Peter 5:7 ESV
“I write these things to you who believe in the name of the Son of God, that you may know that you have eternal life.”
1 John 5:13 ESV
::: UPDATE ABOUT ME
3 Years 2 weeks Post Biopsy
Midline Pontine Glioblastoma/DIPG Grade IV
Now, I have palliative care.
No further treatment for me.
I have anxiety drugs in case I come to difficulty with breathing.
A palliative care nurse came to visit and will assist us with what we need at home.
Currently I’m not able to see my doctor.
For 3 weeks she hasn’t replied nor phoned us.
She may be still on her holidays?
We communicated through email.
I feel a bit neglected by her.
I am getting worse rapidly, day by day.
For now, I increased dexamethasone to 20 mg daily. 10 mg after breakfast, 10 mg after lunch.
It doesn’t slow down my symptoms from worsening.
There are no new symptoms, but all my symptoms get more intense.
It pretty much limits everything I want to do. Every movement feels difficult.
Everyday I have to deal with feeling as if my head was in a cloud,
I have severe difficulty with speaking.
I have severe difficulty walking even with a rollator at home,
I have difficulty moving out from bed,
I have difficulty moving my body,
I have severe head pressure,
I have blurred vision,
I have balance issues,
I have difficulty getting up from our sofa,
I have bowel issues to the point where I can’t control my bowel anymore,
I have tingling pain on my left arm and on my face,
I have weakness of my right arm,
I have many fits of laughter.
I need to be in a wheelchair when leaving my flat.
It’s difficult for me now, I no longer can deal with bumpiness and uneven roads, only a very smooth pavement.
Please go to “My Medical History” for more details.
Thanks for remember us in your prayers 🙏
PS: Thank you for reading, commenting and sharing my posts.
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