As per today, the COVID-19 pandemic has already affected 210 countries, almost 3 million people, and taken more than 200.000 lives.
As I listened to the news,
I heard of a mass-murder in Nova Scotia,
a rise of racist attacks targeting Asians,
a spike in domestic violence,
continued unabated civil wars,
and increased riots and protests,
a harassment of medical front-line workers,
and so on.
It’s horrifying and overwhelming.
This is far more than a pandemic,
it’s about our behavior,
as human beings.
::: FROM BELIEVE TO TRUST
Lately I am rapidly declining physically.
I am weaker day by day.
Without urgent treatment,
this is probably going to inevitably lead to my death.
However, if you ask me if I’m afraid of death?
My answer is no.
Because I’m going to a better place.
The hardest part for me is only to say goodbye to my love, Tobias.
Death.
We all share in common this one thing.
Our spouses, our parents, our children, our friends, ourselves,
all of us get closer to take our last breath.
Life is finite.
Before DIPG,
I was blissfully unaware that DIPG is a fatal disease,
which is going to change my life.
The average life expectancy with late stage DIPG is 9 months.
Everything forward is bonus time.
Things I thought that mattered,
beauty, status, money,
all of sudden flipped upside down,
they don’t matter anymore.
When I faced the reality of death,
I processed that information in my own way.
For me,
in the beginning I was met with fear,
and I didn’t deal with the concept of death willingly with open arms.
Now, my perspective on death has shifted massively.
Honestly, without a doubt,
in the midst of my journey with brain cancer,
I found the true God,
I experienced Tobias’ unconditional love.
These are the best things that have ever happened to me.
Incurable DIPG does no longer carry the weight of fear,
instead, it becomes a source of inspiration,
it drives me.
Being a person that is whole,
opened up my eyes so wide,
the meaning of my life,
that fundamentally changed how I live my days,
moment to moment.
I went through the most important transformation.
I was moving from hope and faith in God’s promises,
to an absolute trust.
With trust,
comes this extraordinary sense of freedom.
For everything I’ve done and undone.
I’m free from my past,
I don’t worry about my future,
I trust God knows and loves me completely,
I trust His grace is sufficient,
I trust He’s always here with me,
there’s nothing that can separate me from His love.
All things work together for my good.
I am certainly not afraid of death,
I trust there’s life after death,
I trust there’s heaven.
Eternity brings context, and meaning, and purpose to my life.
This makes me rise above my momentary suffering.
It allows me to experience a joy filled life!
::: IMPRINT OF LOVE
Terminal cancer is not a gift,
but it’s an awakening.
Since I was diagnosed with it,
my life meant more than just to exist.
I learned to observe around me,
and take the opportunities to show kindness.
I learned so much,
I learned that when I am awake in the morning,
the first thing to do,
is to be thankful to God.
Be grateful for what I have,
because something can change in a second.
I learned to take delight,
and be wondered by His creation.
The concert of birds before sunrise,
trees losing their leaves in the fall,
then it blooms fully again in spring,
the warmth of sunshine on my balcony,
so much beauty!
I always watch my words,
because it might the last word that I say to somebody.
My purpose is to inspire others,
and to be a good light for people,
Through more than a hundred personal stories I wrote,
I hope I encourage my readers to be whole,
and live life with meaning,
be happy, be thankful, and make a difference.
When I understand dying and death,
I understand how to live life.
Death is nothing more than the doorway to home, heaven.
A place where you and me are known and loved.
This changes my perspective on good times and bad times.
Friends,
you may not want to believe that heaven exists,
you may not want to think about your own death,
but it doesn’t change the truth and the reality of it.
You don’t have to be dying from a terminal illness to live a meaningful life.
Yet, we all have an expiry date.
Nobody knows what tomorrow brings.
How do you want to finish your life?
Friends,
I hope that you’ll experience the profound transformation of your daily life,
have more love to yourself,
have more confidence,
have more compassion,
have more courage,
show vulnerability,
show more kindness,
share more love,
have more laughter.
I hope love becomes the only thing that really matters in your life,
and joy that transcends circumstances
will become your state of being,
and leave an imprint of love and kindness on the lives of others.
Love,
Titien
“But our citizenship is in heaven, and from it we await a Savior, the Lord Jesus Christ, who will transform our lowly body to be like his glorious body, by the power that enables him even to subject all things to himself.”
Philippians 3:20-21 ESV
“”Let not your hearts be troubled. Believe in God; believe also in me. In my Father’s house are many rooms. If it were not so, would I have told you that I go to prepare a place for you? And if I go and prepare a place for you, I will come again and will take you to myself, that where I am you may be also.”
John 14:1-3 ESV
“”Not everyone who says to me, ‘Lord, Lord,’ will enter the kingdom of heaven, but the one who does the will of my Father who is in heaven.”
Matthew 7:21 ESV
::: UPDATE ABOUT ME
2 Years 11 Months Post Biopsy
Midline Pontine Glioblastoma/DIPG Grade IV
Today, April 29th, I received the 31st round of Avastin. My doctor still wants me to continue with this treatment.
Meanwhile, I am still waiting for the radiologists to arrange a FET-PET-scan to plan my 3rd round of radiation.
I am getting worse pretty rapidly, day by day.
For now, I increased dexamethasone to 6 mg daily. 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 heavy. I have difficulty speaking, my voice sounds nasal, I have difficulty walking, severe head pressure, double vision, balance issues, bowel issues to the point where I can’t control my bowel, tingling pain on my left arm and slightly on my face, weakness of my right arm, and many fits of laughter. I need to be in a wheelchair when leaving my flat.
Please go to “My Medical History” for more details.
Thanks for keeping me and my family in your prayers 🙏
PS: Thank you for reading, commenting and sharing my posts.
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Hi Titien
Your post has moved me to tears. You are so unbelievably strong and courageous.
Although you’re not afraid of death in the knowledge that you’re going to a better place, let’s hope that it won’t be just yet. God willing the re-irradiation and the Avastin will slow down your decline and give you more time with Tobias and the lovely things in life you enjoy.
Many thanks for your kind wishes to me in your reply to my comment on “Living in Wholeness”.
You’ve inspired me more than I can express.
Love
Elisabeth
Hi Elizabeth,
thanks 😊 I’m hoping also that I’ll survive until the radiation treatment, until now I’m still waiting for the appointment 😅. It’s beyond our control. I hope that I will have more days on earth, but whatever it will be, I have peace. Thanks for your comment, I’m glad that my stories inspired you. Hope in life on earth, you’ll be a whole person that make difference in others life too with love kindness and courage. Stay healthy and happy 😊. Love,-T
Titien,
God is great!
You are so encouraging in my life 💪
Will continue pray for you and your family
Love,
Christina
Hi Christina,
Thank you for keeping me and my family in your prayer ☺️❤️
Love,
– T
Dearest Titien,
I‘m not so good in such things…but let me try:
I follow the lines which Elisabeth wrote above.
And absolutely follow your words…you know, we both suffer from the same disease.
But you are much more strong than I ever expected from a person…
Since I met you in Beijing in 2012 I have had this feeling…you are very special, very kind, a wonderful person with a special light in your eyes, in your soul.
Your kind of seeing the world, especially love will be a inspiration to me. Thank you for this.
Love – Tom ❤️
Hi Tom,
Thanks for your sweet encouragement 😊. I hope for extra strength, love, peace, comfort and overflowing joy in your life.
Love, -T
Soy Bernardita de Chile,sigo tu historia y se que eres una mujer fuerte y guerrera.Nunca pero nunca pierdas la fe y estoy segura que Dios y Nuestra Santisima Virgen te daran mucho mas tiempo para estar junto a tu amado esposo en esta tierra,este plano.Creo al igual que tu que si existe algo mas alla de la muerte,la vida feliz y eterna y todos nos reuniremos alli.
Nosotros tenemos nuestro angel que partio con 5 añitos de DIPG,nuestra Florencia y sabemos que esta dia a dia junto a nosotros.
Te envio todo mi amor,fe y energias positivas.Sigue esta lucha,se que puedes.
Cariños desde Chile
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Hi Bernadita,
Thanks for sharing. I’m sorry about Florence. Thanks for your heartwarming message. I know that you understand what I am going through now. I’m sure Florence will greet me and show me her place 😊. ❤️