It’s been almost two weeks that I am back on steroids, as supportive or palliative treatment. My clinical symptoms were increasing, maybe caused by edema, which inexorably leads to a further decrease in my quality of life.
Dexamethasone helps easing my discomfort, but it has also substantial side effects: insatiable appetite, weight gain and cushing’s syndrome, often accompanied by disﬁguring striae and a ‘moon face’, completely changing my appearance.
I needed to weigh the pros and cons, the benefits and the side effects. A dilemma wether I should continue with steroid or not.
Tobias assured me that quality of life is most importance objective. He wants me to feel comfortable, and not to worry about how my appearance will change. He told me that he’ll always love me.
::: THE ETERNITY
Do I think more about death lately as my symptoms are worsening?
Yes, of course, but I’m afraid of it just very little.
When I believe in eternity,
when I come to faith that there’s eternal glory to be won,
all of my perspectives about life and life’s meaning take on a completely new dimension.
Eternity made my life with cancer is no longer hopeless and futile. My whole life has became meaningful.
I know nothing about the Heavenly Kingdom,
but I read God’s words that He will wipe every tear from our eyes, and there will be no more death or sorrow or crying or pain. All these things are gone forever.
Well, I’m not a person deluded easily.
I’m not superstitious.
I don’t believe in lucky charms.
I am rational enough in all other respects.
There’s unknownness about the afterlife.
But, honestly, living with DIPG is more frightening than the unknown.
Thus, I call myself a believer,
because I’m not a knower.
My faith is not a denial of doubt,
it is an acknowledgment of it.
It is relevant where reason can’t go,
life after death.
As I read His words and experience the unexplainable good things in my life, I found myself no longer so hooked on common sense.
My faith has brought me some side effects, too. There are people who laughed at me, or mocked me, or unfriended me.
It’s ok, I no longer need to deny my faith.
Because it is what has kept me going.
No one can prove that there is an eternal kingdom, but no one can prove there isn’t, too.
Believing that there’s an afterlife, a heaven, has brought me peace, knowing that death is just a beginning, and someday after I leave this life, I’ll be reunited again with my loved ones, with Tobias, with my family and my friends in heaven.
::: LIFE ENHANCEMENT
Although DIPG robs more and more of myself,
I am experiencing tremendous blessings in my life.
I know who I am.
I know that I was created to be loved.
2.5 years ago, in a hospital bed, I repented and accepted Christ as my God.
This transformed my life completely.
I, since then, live for eternity.
My life here on earth has been a life of faith.
The thought of eternal life,
that I belong to God,
what He has done for me,
and that I’ve given my life over to Him,
has made it for me so I have lived an incredibly peaceful life.
I have come to experience joy that nothing has been able to shake.
I live an incredibly happy life with my love, Tobias.
Until today, I don’t have one day without laughter.
Of course I struggle with the pain and the suffering from DIPG,
of course I feel anguish when things don’t go the way I expected them to go,
of course I’m tempted to drown in despair, but Tobias is always here to hold me.
Oh, love is much stronger than those fears and struggles.
I believe that God holds my life.
Everything and everyone who comes across my way is planned perfectly,
absolutely for the very best for me.
My health or lack thereof,
people nice to me or not nice to me,
whatever the circumstances,
everything is for the very best.
I learned that God is a blessed God.
God is love.
He has no other longing than to be able to bless me and to love me.
When I placed my trust in Him,
then I experienced that blessings just flow and flow into my life,
then little by little they also flow out from my life and bless others.
The benefits of following Christ is unspeakably great.
I wish with all my heart,
that you have it the way I have it, too.
::: LOVE IS BEYOND REASON
Death comes to our door without notice.
It takes away our children, or our spouses, or our parents, or our dogs, or ourselves.
Maybe slowly, maybe instantly.
2.5 years ago, I was thinking about these questions after being diagnosed with late-stage cancer:
What is life really worth?
What do I live for?
What do relationships really boil down to?
What is the purpose of life?
What is the meaning of life?
Who am I?
What is my destiny?
What does it mean to live?
My heart was seeking values and meaning, in the midst of my wrestle with fear of death and with the suffering from DIPG.
I yearned for the eternal.
But it’s too vast and too immense for my mind to comprehend.
I acknowledged that I was an adulterer, a thief, a blasphemer, a murderer, a sinner.
I won’t get saved on judgement day.
Until I realized there’s a savior for me,
and nothing what I did made Him loves me less.
Christ paid my debt.
Because of what He did on the cross,
I am forgiven,
I am exonerated.
My death sentence is commuted.
And, He grants me the everlasting life.
That’s why, I no longer deal with people with reason. But I deal with love.
Because love is greater than reason.
you may be in trials of your life,
you may hurt and be in pain,
but it’s not final, it’s temporary.
There’s hope for eternity.
salvation is a gift of grace.
And God gives you strength to get through your affliction,
and to become a joyful person for the rest of your days on earth.
Will you respond to His love?
Will you accept His invitation to the eternal?
“Since therefore the children share in flesh and blood, he himself likewise partook of the same things, that through death he might destroy the one who has the power of death, that is, the devil, and deliver all those who through fear of death were subject to lifelong slavery.”
Hebrews 2:14-15 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
“For now we see in a mirror dimly, but then face to face. Now I know in part; then I shall know fully, even as I have been fully known. So now faith, hope, and love abide, these three; but the greatest of these is love.”
1 Corinthians 13:12-13 ESV
::: 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.
On March 18th, I will receive the 28th round of Avastin.
And I will ask my doctor for future treatment, a possibility of doing the 3rd round re-irradiation, as my symptoms are worsening. Also, wether the result from FET-PET will actually yield any actionable insight.
For now, I take 2 mg of dexamethasone daily, but I plan to taper it down. I’m not sure if I can get back to no steroids, but I know how to listen to my own body, and I will adjust the dosage accordingly.
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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2 Replies to “SAVE MYSELF SOME PAIN”
Hey Titien, this is Holger, you favorite sink-growing chili plant. Always reemerging whenever you don’t expect it 😉
I’ve been following your blog during all the months since it came into existence of your husband. Reading all your posts with your thoughts and journeys with DIPG and faith. Myself feeling happily, sad, hopeful, worrying.
I feel sorry that your wellbeing deteriorated rather significantly in the recent weeks. Though it seemed the Avastin treatment at least supported you in making it all the way up until now and hopefully even much further. Tobias is right, wellbeing comes before your looks. You’ll always have him.
I’m amazed by the plenty journeys your made in the recent months. Traveling, though strenuous especially for you, is so rewarding and usually lifts up one’s spirits. I’m happy that your husband’s job enables you both to enjoy this work/travel/vacation style of living, spending most of your precious time together.
All the best wishes for you and your husband
Holger – stay spicy!
Hi Holger! What a surprise to hear from you again 😊 made me so happy 😃
Yeah, it’s been more than 1 year I received Avastin, and it stabilizes the tumor until now.
Unfortunately, however, these past weeks my symptoms are worsening quite fast. But steroid helps ease my discomfort.
What you said is right, I have a husband that loves me dearly, and his job gives us the luxury to travel and to spend long weekend together 😁. But, now all of his workshops were canceled due to covid, so no trips for the next few months. This, also good, we play carcassone board game (I’m sure majority Germans love this game, cos’ it has many many rules to follow 😆)
Thanks again to drop a comment! It meant a lot 😉
Please avoid crowds, stay healthy and stay spicy 🌶!
Have a great week ❤️