To move and to hope.
“Are you feeling anxious for MRT”? asked my friend.
“No, maybe a bit nervous, but not anxious.” I replied.
::: I EXPERIENCED UPS AND DOWNS
Since biopsy confirmed DIPG on 20 May 2017 until today, I live my life one day at a time. I have been through all, physical and emotional pain and limitations.
I experienced double vision, can’t swallow, can’t speak clearly, can’t stand up, can’t walk, can’t lift my left hands, can’t touch my nose with my left hands when close my eyes, hair fall and almost bald due to chemo, electric shot pain on my right face, tingling pain on my left shoulder and arm, temperature problem, tiredness, needles, feeding tube through nose and belly, many more physical pain and limitations.
Emotionally also ups and downs. Sweet and bitter, I felt it all. Bad news and good news, tumor was growing, tumor is stable.
I experienced it all.
I was in the dark valley season, now I’m on the top of the hill season.
::: PERFECTLY HAPPY
Today, I swallow, I speak clearly, I walk steadily. There’re still some limitations, but overall I feel good, and hoping I will get better each day.
When I close my eyes, seeing my life, my Almighty God, my husband’s face, my family and friends, and you, I can’t help but smiling. I’m blessed abundantly. Your love is my confidence, your love made me strong. I feel so grateful.
I am happy, I am loved, I am safe.
There’s German expression describes how I feel: wunschlos glücklich (happy beyond desires/perfectly happy).
“Honig, we’re going to Rome for our anniversary. In June we’re going to UK, and in July we’re going to beautiful Florence”, said my husband.
“You sound so confident that in the next few months.. me physically well”, I replied.
“Yes, I do! You’re perfectly fine” he smiled.
I am very excited for our upcoming trips.
::: VERY GRATEFUL
Meanwhile, I can’t stop thinking of the victims of the shooting tragedy in Florida. Seeing their faces and short testimony about them, tearing me apart, my heart is crying..
They’re supposed to finishing their school, embracing opportunities, traveling, falling in love, failing and then succeeding, simply growing up and experiencing life.
Many of innocent children in this world are not dying and died from a deadly disease like DIPG, but from gun violence, war, hunger, domestic abuse, raped, corrupted evil society, etc.
…. I cant describe with words of how I feel.
Therefore, for them, for you and for myself:
If I can still have strength to walk, I walk
If I can still do xyz therapy, I do it
If I can still typing, I share my journey
If I can still forgive yesterday, I do it and embrace today and tomorrow
If I can still use my hands to cook, it’s my husband’s luck to have the best cook at home
If I can still work with my hands, I am making bath bombs (with encouragement message pill inside) for others
If I can still do trips, I go
If I can still listen to you, I will be there and praying for you
If I can still do it, I do it.
I am still here, and yes still I can do above mentioned things.
I am grateful with my circumstances. I can’t just sitting and thinking of dying all the time. As long as I am still here, even if I may grow weak, my flesh may fail, I will keep hoping and moving. Moving from fear to faith, moving from dread to hope, moving from sorrow to joy, moving from bondage of limitations to miracle freedom, moving from past hurt to forgiveness, moving from life sentence to grace, moving…
It’s God’s promises and faithfulness enable me to move and hope.
It’s my husband’s love strengthen my confidence to move and hope.
It’s my family, friends and your hands that support me to move and hope.
This is what I need, and I have it all.
I am very very grateful. Thank you so much.
I wish you surrounded by unfailing love, so you are able to move and to hope. To live your life to the fullness, and to live wunschlos glücklich life.
40 weeks post biopsy Brainstem Pontine Glioblastoma Stage 4 (DIPG)
Yesterday my doctor said that MRT shows the tumor is stable. Compare to MRT last November 2017, it’s shape change, but it’s size and cells activity the same.
I was hoping for better news, that the tumor is shrinking or tumor cells are dead, no more DIPG.
But anyway I’m glad for this news and keep hoping for healing miracle.
I supposed to take the next round chemo in 2 weeks. But my leukocyte now is low (2.48, normal 4-10). So have to wait and see.
My symptoms are quite stable. Now I am able to walk alone to my ergotherapist, 250 meters from home.
So, I am blessed with improvements I have made. I hope for more good things to come.