Have you watched the live action Aladdin movie starring Will Smith as the Genie?
Last week I dragged Tobias to the cinema to watch it.
It brought back childhood memories and the soundtrack “A Whole New World” felt very nostalgic.
So, I couldn’t help but use it as the metaphor to give you a clue about the mystery of me living with DIPG.
::: A BIGGER STORY
Guard to Aladdin: “You were born worthless, and you will die worthless..”
But by the end of the movie Aladdin is living in the palace.
2 years ago,
doctors told me the biopsy result showed
aggressive brainstem tumor (stage-4).
I was given max 2 years to live.
It was very traumatic.
I went through a lot of treatments,
radiotherapy and chemotherapy
just to give me a chance to live a short time longer.
Then a few months ago,
I was told that the tumor was progressing.
No more established treatment options were available.
I was given only weeks to live.
I didn’t know how to digest that.
Yet, today I’m still here,
beating the odds.
I refuse to let perjury pin me down.
I have got a lot more on my plate than worrying about dying.
Selflessness instead of selfishness.
every detail in my life,
is woven into the bigger story
of God’s work in our world.
::: HOP ON THE MAGIC CARPET
Aladdin to Jasmine: “You should see these places. I mean there’s a whole world outside of books and maps. Do you want to? Do you trust me?”
It’s difficult for me to be on my own now.
I like my independence,
to have the ability to get out and do things on my own.
But my disease doesn’t allow me to do that anymore.
So, I learned to be more positive,
not focusing on the bad things around me.
I change the things I can change,
removing myself from the things I can’t,
do things with what I have left in me.
These past 2 years I had an amazing life.
God has been good to me.
I got married,
I traveled to many places,
I finished German courses,
I supported the needy,
I wrote hundred of stories,
and became a blogger with my own website.
I wouldn’t have had such a wonderful time,
if I didn’t trust God,
and stepped forward.
Not sulking in the past,
not being stuck in the future cloud either,
but focusing for here and now,
doing what I can do today.
::: BE REAL
Genie: “I made you look like a prince on the outside, but I didn’t change anything on the inside”
I was good at playing the piano,
a dancing queen, a public speaker.
Now I have PEG-tube attached to my stomach,
I see double,
I walk limping,
my face looks different,
my speech is mumbling,
my left arm feels tingling pain,
my right arm feels weak,
my face feels sensitive pain,
my head feels pressure and heavy,
I lay tired most of the time.
This is something that I learned the hard way.
It took me a while to understand,
by showing and sharing my pain and suffering,
I’m allowing others to do the same, too.
I understood compassion and empathy like never before.
With or without DIPG,
my self-worth shouldn’t be dependent upon the acceptance of others.
I learned to stop viewing others as my standard of happiness.
I am my own person.
Genie: “there isn’t enough money and power in the world for you to be satisfied.”
I am a realist.
I had invested my life into something temporary,
things like job-title, salary, beauty, and other external factors.
But when those went away,
I then understood,
what really matters in life.
I set my heart to putting a smile on people’s face.
With simple things,
brighten someone’s day,
to support some children to continue going to school,
to provide wheelchairs for elderly house in the small village,
to ease the financial burden of some struggling with chronic illness,
To see a smile full of hope on their faces,
is worth more than all the treasure in this world.
My wish for you:
Don’t fall into a rut of misery,
but give your life meaning,
share love with others,
and you’ll see a whole new world.
“Whoever pursues righteousness and unfailing love will find life, righteousness, and honor.”
Proverbs 21:21 NLT
::: UPDATE ABOUT ME
24 Months Post Biopsy
Midline Pontine Glioblastoma/DIPG Grade IV
On Thursday I will receive the 9th round of avastin.
Next MRI is scheduled on June 13th.
Last week I stopped taking dexamethasone.
Then I started feeling so weak, I want to sleep longer, lost appetite, pain on my right face.
I’m not sure this progression of symptoms is caused by the tumor or if they are side effects from steroid withdrawal. I will wait and observe for this week. If it’s not getting better, then I go back taking dexamethasone again.
Please go to “My Medical History” for more details.
Thanks for keeping me in your prayers 🙏
PS: Thank you for reading, commenting and sharing my posts.
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