A few days ago, after checking out of our hotel in Frankfurt, I sat in the lobby waiting for Tobias to finish his workshop. As I opened my iPhone, I saw a notification from Facebook stating that several of my posts apparently were against their community guidelines and that they suspended these posts consequently. I requested a review. Then, instantly they deleted my posts and blocked the link to my website www.titien.de. I wasn’t expecting this and I felt very disappointed.
::: LIFE IS LIKE A PUZZLE WHERE PIECES GO MISSING
Half of my joy and satisfaction of life living with terminal brain cancer DIPG comes from encouraging others through my stories. This makes my life more meaningful.
I never asked for money, and my writings never intentionally offended anyone. Becoming a writer just happened, and I know that this is my calling. It makes me joyful when I hear that someone gets inspired and encouraged by my stories.
So, when Facebook deleted my articles, I asked God ‘why’. I just couldn’t understand why this happened to me.
I was hurt. Tears flowed down my cheeks.
I googled about how long it takes to get a Facebook page recovered, discouragingly I found many negative reviews saying that it takes months and some even never have been recovered. Because of this issue, many have lost their business and money.
As I read the reviews, it came to my mind that there are people who are struggling with loss, hopelessness and despair in their life, for reasons far deeper than my writings.
::: LOVE COMPLETES THE PUZZLE
This week, I was scheduled to meet with my doctor to discuss the latest MRI result.
Lately, my symptoms worsened considerably.
In the hospital, as I was sitting in the waiting area,
I was thinking of the devastating news I heard this week from my friends:
Someone who is a mother of 2 year old son got diagnosed with breast cancer;
a wife found out that her husband is cheating on her with another woman;
someone’s mother was admitted to ICU;
someone lost her loved one to DIPG;
someone lost his wife in a car accident.
Their life’s changed instantly.
We’re living with surprise and sometimes we don’t know what to do.
I am familiar with how it feels.
2.5 years ago I was diagnosed with late stage brain cancer.
Life changed in that moment in ways I wouldn’t have even imagined.
I felt it’s unfair and found it very hard to accept.
My life was like a puzzle where pieces went missing, but then love came and completed the puzzle.
I remember the quote:
“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.” (anonymous)
Tobias is in someway embodied Christ’s love for me.
And it’s so profound that my problems didn’t seem insistent.
Unbelievable peace that really passed all my human understanding seemed to safeguard my heart.
Yesterday, I asked Tobias, “how do you do it, watching your wife struggling with cancer, and not drowning in desperate despair?”
He paused for a few seconds, and looked at me and he said to me “because I love you”.
When we suffer, we just should not suffer alone.
Sometimes, it might take all our human effort to reach out and say ‘I need help’.
Maybe to our spouse, or to our family, or to our friends.
And, above all, turning to Christ,
because He loves us unconditionally,
He’ll give us that grace and mercy in time of need.
Trust Him, He will not fail.
::: DON’T QUIT ON THE PUZZLE
Since I was diagnosed with incurable DIPG until today,
many of you asked God to heal me, but He has not.
DIPG robbed me of my future and my physical abilities.
But, during this process, I learned that no matter what struggles I have, I still need to do the next things.
To get up in the morning and do something,
for someone else,
or just the movement away from the self-fixation on my pain and my problem.
Keep discovering pieces of the puzzle, and make them known.
There are more important things in life than walking and consulting business.
Finding a purpose for living,
and the experience of joy, peace, contentment in life.
I realized that for me, typing a story for you on my iPhone and smiling while doing it is this miracle for me.
::: SEEING THE BIG PICTURE
2.5 years came and went,
and DIPG takes away more and more of me.
I can’t brush my hair with my right hand anymore,
I can’t walk without help,
My voice has become nasal and my pronunciation is mumbled.
During all of the challenges I faced, DIPG changed me not only physically, but also my personality.
I was already very loving to people and really compassionate,
but not at the level that I am now.
DIPG softened me even more than I already was, my compassion level for those who suffer became greater than I could have ever imagined, and truly opened my eyes to the meaning of life and love.
At the point when my back was against the wall, and I’ve done anything I could, our Heavenly Father has never just left me completely without help. He’s always been there.
The evidence of Christ’s love rests in the intrinsic values that I get to enjoy.
It’s in having a husband, Tobias, who loves me, committed and kind to me.
Being able to travel and see the wonders of this world.
And knowing that no matter what’s happening right now, that there are good things to come. And that hope has always been validated.
Had I not faced all that I faced,
I wouldn’t know God like I know Him today.
I wouldn’t discover incredible realities of life, the power of love, and that life is so much more than we can see.
no matter what the trauma is,
try seeing the big picture,
how the little pieces of your life’s puzzle fit together,
it will change everything for the better,
now and into eternity.
“Therefore, since we have a great high priest who has ascended into heaven, Jesus the Son of God, let us hold firmly to the faith we profess. For we do not have a high priest who is unable to empathize with our weaknesses, but we have one who has been tempted in every way, just as we are—yet he did not sin. Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.”
Hebrews 4:14-16 NIV
::: UPDATE ABOUT ME
2 Years 10 Months Post Biopsy
Midline Pontine Glioblastoma/DIPG Grade IV
On March 5th, I received the 27th round of Avastin.
And I met my doctor. She told me that my MRI result showed that the tumor in my brainstem was still stable. But the lesion in my cerebellum was slightly bigger. However they said it looks like a necrosis (dead cells from the treatments), not metastasis. She suggested to confirm this with an additional FET- PET-scan.
We will discuss with our doctor if the results of this scan will actually yield any actionable insight. If yes, we will opt for this FET-PET scan. Unfortunately, it is not covered by our health insurance.
For now, my doctor prescribed me again with steroid (dexamethasone). I take daily 2 mg instead of advisedly 4 mg. It helps ease my discomfort. But, I hate to think of the side effects this steroid causes: cushing syndrome, leaving me with a round and puffy face.
Please go to “My Medical History” for more details.
Oh by the way, thanks so much for your support, responding to Facebook that my posts are not spam. So my Facebook page was recovered and all posts were retrieved in less than 6 hours.
Thanks for keeping me in your prayers 🙏
PS: Thank you for reading, commenting and sharing my posts. Please subscribe to get updates by mail. 🤗
4 Replies to “LIFE IS FULL OF SURPRISES”
Your courage and faith are a great inspiration to me (a person of small faith). You are like the centurion of whom Jesus said “I tell you, not even in Israel have I found such faith”.
I’m responding to your post to mention the ONC201 investigational drug to you that has yielded promising results for H3 K27M-mutant DIPG sufferers (hope my mentioning this drug won’t offend your husband Tobias who, as a scientist, may already have checked it out).
I would love to read in one of your next posts that ANY treatment you may get will give you more time with Tobias and more time to inspire your readers. I rarely pray but I’m praying for you and all DIPG warriors.
Heartfelt good wishes
Thanks for your warmhearted comment 😊
Oh, I wish I can be like that centurion, but actually I’m not even close. I, like what you said, a person of small faith, too 😉.
Well, at least, you and I both know that we’re weak. The good news is He said “My grace is sufficient for you, My power is made perfect in weakness”. So, be still and let’s enjoy the overflowing blessings from our gracious Father in Heaven.
Thanks for mentioning treatment option ONC201. I consulted with the doctor in Heidelberg National Center for Tumor Diseases, in December 2018, when I had to go re-irradiation. I asked opinions on trial drugs Avastin/ONC201/Panobinostat. She advised me to go with Avastin, cos’ it’s trial stage is more advance than the other drugs.
It’s been 1 year I’m taking avastin, and it stabilizes the tumor until today. However, my symptoms are worsening quite fast. So, I will ask for future treatment/drugs options.
Thanks again for dropping me a comment 😊
In this covid pandemic, please take care and stay healthy!
Wish you a wonderful week 😘
You don’t know me but your husband does. I have been reading your posts regularly and after some time I have started again. I always cry due to your generosity. Tobias is just like you describes. I am happy that you have each other.
Thanks so much for reading and liking my stories, makes me happy 😃🥰.
Hope you stay happy, stay safe and stay healthy 😊. Tobias says hi 👋😁