Hello friends, I’m still here.
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 6.5million people, and taken more than 385.000 lives.
Many families were not able to visit COVID-19 patients in hospital.
Many patients are not able to have the funeral they would have wanted.
Many patients are alone facing their condition deteriorating.
Many patients are dying alone without family or with loved ones.
This is the harsh reality.
Patients are unable to see or speak with their families;
their families are unable to say “I love you” one last time.
::: ALL THINGS WORK FOR MY GOOD
In December 2019, Tobias and I flew to Seoul.
It was cold in Seoul. But, we met our family, and spent New Year 2020 with my parents, who flew in from Jakarta, and my brother’s Korean family.
In February 2020, Tobias and I managed to travel to Israel. Something not many Indonesians manage. Indonesia and Israel have no formal diplomatic ties. Yet, I had the chance to go with a visa from Germany to visit Jerusalem and Tel Aviv. I experienced a bit the history of Jesus.
Then in March 2020, Tobias started working from home as the coronavirus-pandemic arrived in Germany. That was when I started to deteriorate physically. Now, Tobias is still home with me and I cannot be without help anymore.
Somehow, I know that all things work together for my good.
God is working in my suffering world.
::: GOD IS GOOD ALL THE TIME
Is that really true?
Is God good when we’re in pain?
Is God good when we’re in conflict?
Is God good when we’re depressed?
Is God good when we’re stressed out and worried?
Is God good when we’re under attack?
Is God really good all the time?
Is God good when we suffer?
Of course all things are not good.
It would be mockery to say that they are.
The death of a child from DIPG is not good.
Though I may not understand all the plans
God has for me,
but I trust my life in His hand.
I trust that He is the source of everything good in my life.
He gave me sufficient grace in these 3 years living with incurable brainstem cancer/DIPG.
I was loved and happy beyond what I could have imagined.
So, even when things get tough,
this is my standard,
I trust God is good.
In the past,
I always assumed that God was bad and simply didn’t care.
I was pessimistic about the future,
I lived in despair,
I lived in depression,
it was very discouraging.
But, now I know,
through faith I can clearly see,
God is good all the time.
Life may not be good all the time,
but God is good.
Hope is lifting around me.
I never feel alone in my journey with DIPG.
I heard from behind the green screen,
when Tobias and his colleague gave a seminar to professional scientists on career development.
A question raised amongst them:
What makes them happy?
They thought that it’s a good question to ponder.
They said maybe to pursue the career they wanted.
While listening to them, I thought:
I believe happiness is more than just a career.
It’s about being whole and content.
knowing why we exist,
knowing the purpose of our life,
knowing the meaning of our life,
knowing what matters in our life.
::: LOVE IS THE GREATEST
Everyday, my physical condition is getting worse.
I need help moving my body, be it sitting on the sofa or lying in bed.
Tobias knows how I want to be moved,
he said he moves me around like chicken on the grill.
I need help with taking a shower,
I need help drying my body,
I need help with putting lotion on my skin,
I need help with changing my clothes,
I need tissues all the time,
I drool a lot,
I need help with putting on my socks,
I need help with putting eye drops,
I need help with getting out of bed,
I need help to sit straight on the sofa,
I have difficulty with chewing,
I became slow like a sloth,
while Tobias is a fast eater, he inhales his food,
so he needs a lot of patience now,
waiting for me not rushing with food and choking.
I need help with opening a water bottle.
He always prepares Müsli or porridge with lots of fruits for our breakfast,
he knows I like my tea with honey 🍯,
he always makes us afternoon coffee.
I whispered to him slowly,
sometimes I type on my phone to communicate with him,
I need help with everything now,
I am basically like a big panda 🐼,
hopeless and cute,
crippled and disabled.
I cried a lot lately,
because I am losing my bodily functions,
and I’m aware of it,
yet there’s nothing I can do,
it stirs my heart with a lot of emotions.
Tobias is always there,
helps me without complaints,
only with smiles.
He loves me unconditionally,
he never feels ashamed with my changing appearance from taking steroids (cushing syndrome).
I don’t know what he sees in me.
I just melt in him.
Tobias loves me just as I am.
In the frailty and in the struggle.
Still lots of affections and intimacies,
tons of kisses, hugs and dances.
Life is full of situations,
to which I can no longer respond with part of myself,
but only with Tobias commitment,
a commitment lived out of understanding what love means.
He is unlocking life’s treasure, love.
Tobias is the greatest gift and blessings I have ever received from God.
I am so grateful to God for His goodness and His love,
that I have seen evidence of His kindness,
in so many ways.
I know God is good to me.
all losses are painful.
But, don’t lean on our own understanding,
when life doesn’t make sense,
don’t let it steals away our joy.
Be grateful to God for His goodness,
trust that He loves us and He cares.
God is faithful.
His grace is always sufficient.
God is good all the time.
Check this out:
“So now faith, hope, and love abide, these three; but the greatest of these is love.”
1 Corinthians 13:13 ESV
“And we know that for those who love God all things work together for good, for those who are called according to his purpose.”
Romans 8:28 ESV
::: UPDATE ABOUT ME
3 Years 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.
Palliative care nurse will come next week and assist us with what we need at home.
Currently I’m not able to see my doctor.
She may be on her holidays.
We communicated through email.
Although she’s not replying to us until now.
I feel a bit neglected by her.
I am getting worse rapidly, day by day.
For now, I increased dexamethasone to 18 mg daily. 10 mg after breakfast, 8 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.
I have difficulty with speaking.
I have 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 severe double 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 keeping me and my family in your prayers 🙏
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