One morning last week, I was on the train to home from Frankfurt airport, it was filled with people. A few rows behind me sat a woman with her young son.
There was something about that boy. Those who heard him frowned and glanced at him. Something telling them that they’ve never seen the likes of him before.
It wasn’t his face, but his attitude and demeanour. He looked frustrated, and was complaining to his mom. Then, he swore at his mom, “F— you, a—h—“ !
The mother kept calm and didn’t get dragged into a fight, instead tried to stop the show, no debate and no argument. But the show was carrying on. He kept complaining.
I noticed that the boy had a psychological disorder. It must be hard for his mom watching how others on the train may notice and stare at her son, and she needed to handle the situation at the same time.
Then, before we left the train, I heard that he calmed down, and she was joyful with him.
I feel this boy, I feel this mother. I am disabled too. So, I invite you to walk with me, I’ll tell you my disability and my expectation as DIPG warrior.
::: WHAT I WANNA SAY
Most of the people who see me travel a lot assume that I physically well and my life is easy. No, it’s hard. Feeling awkward or embarrassed is something I experience a lot.
I have crossed eyes,
sometimes people are either staring or looking away from me.
I walk limping,
it’s not easy to walk without someone assisting me.
I have constant pain of my left arm since my biopsy in May 2017,
with my left hand I can’t tell the difference between wet or dry, nor between hot or cold.
One time, in a restaurant I lifted a hot lid from a hot cup of tea with my left hand, few seconds later, I unconsciously dropped it as a reflex as it was too hot.
I have a nasal voice, and I speak mumbling.
Sometimes it can be exacerbating. People always ask me to repeat what I say. And I always speak out although it can be easier to be quiet than to be embarrassed. Well, I’m an extrovert and an expressive person.
I have a weak right arm.
It’s not easy to do things anymore, because I’m a righty. I even struggle to lift up the spoon to my mouth while eating. I am now learning to be a lefty. Tobias always helps cutting my meals to bite pieces. The other day when we had dinner with Tobias’s colleagues, everyone cutting their large piece of bruschetta, I tried to cut it, but my arm was too weak, so I decided to just eat it from my hand, but my arm was also too weak to hold it firmly, so it fell and I made a mess on my plate and my hand. Those who don’t know I have DIPG, might assume that I have bad table manners.
I am losing control of my bladder.
Luckily, I have Eurokey (a Europe-wide key system that allows access to special toilets for people with disabilities). So, whenever I need to use a public toilet I can rush in without queuing or buying a ticket first.
I have joint pains,
on my shoulder and my back because of the stiffness. It affects my sleep. I can only sleep with sleep position on my stomach.
Lots of times I feel like I cannot take a deep breath, or I cannot yawn properly.
It’s like this: I feel the urge to yawn, I shut my eyes, my mouth opens up, but then nothing happens, and my mouth will sort of close itself, before I feel as though I’ve gotten the yawn “out,” so to speak. I’ll just keep on trying to yawn, a minute apart, for minutes at a time mostly happened in the evening, and none of them lead to that sort of satisfied, until after several attempts, I manage to finish one good yawn.
I have a fits of laughter.
I am laughing uncontrollably when I feel happy, when I see/think something funny, and when I feel upset. My doctor and Tobias think that this is the ‘good’ side effect from DIPG. It’s a challenge for me when I go to the art museum, cos’ I can’t behave with equal decorum inside, even though I want to. Looking at the humorous painting will tickle me and stifles my laughter. When Titien is in the museum, you can’t stop her from laughing. As always, I got the eyes from the guards and other visitors.
I have a peg-tube attached to my belly.
I wish I could go and swim in the ocean in Bali with Tobias, or going to have a hot bath, or going to the sauna. But, I can’t because I have peg tube on my belly. Instead, every time I take a plane, I get security checked by an employee, because the scan of my body shows a weird tube in my belly.
I have sensitive pain on the right side of my face.
I feel pain when Tobias brushes my right cheek, or when I apply eyeliner to my right eye, or when a string of my hair touched my right face.
My right eye doesn’t close properly.
I need to use eye drops before bed otherwise I’ll wake up with red dry eyes. Tobias makes funny jokes when he applies eyedrops to my eyes, said “airdrops incoming”.
I get tired easily.
It takes patience to walk with me. After 1 km of walk, I feel very tired and need to sit down for a while before I can continue walking.
And there are symptoms that affect me physically: I lose hair. When I take steroids I gain weight and get a puffy face. These effects cause me feel bad about myself in weak moments.
I have a drooling problem.
Now only occasionally. After biopsy, when I had problem swallowing, I was drooling frequently, and at night I woke up many times because my pillow was wet, or I struggled with coughing the sputum out.
I need to get blood drawn and I receive chemo every 2 weeks.
These are two needle punches if I’m lucky, one for blood samples and one for chemo. But, most of the time, I’m not so lucky because I have bad veins.
I need to do an MRI every 3 months.
Every time I feel nervous for the result.
When I got the good news, it’s comforting because then I can tell my parents that they won’t have to worry about me and I have more time to live.
::: WHAT I WANNA HEAR
Tobias sometimes crying, and I was like “you can cry to me”.
I want to make sure that my family and my husband are doing fine, because DIPG doesn’t just affect me but also them. I wanna hear their feelings, too.
My best friend, Kayan, has set up a prayer support group for me after my diagnosis. I wouldn’t be here without them. Thank you for all of your prayers.
Action speaks louder.
My friends, Katinka and Lena, live in different cities in Germany. We’re not regularly chatting over the phone. But, they’re those friends that less talk but do practical acts. For example, when I received the news that the tumor was progressing and I needed to do re-irradiation, I was sad and scared. They just immediately booked trains and came to spend weekend with me. I was strengthened.
like ‘I am praying for you’, ‘I am often thinking of you’, ‘I am reading your updates’, etc. matters a lot to me. Earlier this year my insurance declined to reimburse my chemo bills, although I’m not asking for fundraising, but Marc, a friend of mine whom I met in Beijing messaged me and said that he’d like to offer support financially. His kind words warmed my heart. Fortunately, after we fought back, the insurance company reimbursed us.
Making goals and checking in.
I’m blessed with a wonderful sisterhood with Kayan and Ashlee. They follow through my journey including my short term goals, and they participate in them. We frequently have video conferences.
Listen to my emotions.
The biggest challenge for me is feeling guilty.
I feel guilt that I let my parents in their old age worry about me, I feel guilt that I can’t do many things by myself and I depend on Tobias, and so on. Tobias knows me, he listens and reads my emotions, and he comforts me not to feel guilty.
Read my blog.
I choose to write a blog about my experience that I can share with my friends and family, and you. I truly appreciate your effort to stay up to date with what is happening in my life. I am happy when I talk with someone and that person is up to date about my condition.
In conclusion, I wanna hear love. Your love makes a difference in my life.
There are some things that I feel uncomfortable with, too.
People who are judging me, that I have DIPG as a result of karma, or because of bitterness, or because of sins, or because of unhealthy lifestyles, or because of an unforgiving hateful heart.
People who are suddenly contacting me again and asking about the basic information about my disease. It’s tiring to repeat about DIPG which easily can be found by googling it. I felt they don’t really care about me.
People who are giving unsolicited medical advice without having any qualifications whatsoever. They advised me to not taking chemo, not eating sugar and taking this or that diets, avoid medications and go to this healing plants, and so on.
::: WHAT I WANNA SEE
I wanna see my Tobias, my family, my friends and you, living your life with hope and with love.
Other people happy.
I try to be kind to everyone I meet, because they’re maybe going through something, and even though I’m too, but I’m not going to guilt-trip them. I’ve learned that everyone has their own emotions, not just me. When I hug and when I give. I do it sincerely.
The nurses feel appreciated.
They work hard, committed, professionally, out of love to take care of me and other patients. I value them, and try to show it by bringing them thank you cards, donuts, their stuffed spirit animals, knowing their names. I’ll never forget them.
My insight grows.
I’m not gonna slack on my studies about the scripture and not gonna stop from writing just because I have DIPG. I’m still going to learn, and to encourage others too.
DIPG gives me an excuse to do nothing, but I don’t like using that excuse for everything.
So, I don’t just shut down but continue to push through it, and live my life happily.
Cherish the moment everyday.
I don’t know when’s my end comes, so right now what I just do is cherish my life.
I enjoy every trip, every dinner, every phone call, etc.
DIPG is a reason to give up, but love and hope are two reasons to not to.
I wish I could commemorate when we find the cure.
I may not live long enough to see it myself,
there’s no significant improvement of treatment protocols in the last 40 years.
Generations lived and died without ever seeing a cure.
But those warriors, and us who are still fighting now, what kept us going is hope.
Until finally, one day after decades of despair,
hope hopefully wins.
Being pain free.
I believe, when I enter the gate of heaven there’ll no longer be any death, any mourning, any sorrow, and any pain. But eternal peace and joy.
thanks for walking with me. 🤗
I hope you’re living your life,
always be joyful,
and no matter what happens,
pray all the time,
and give thanks in everything,
because you have the living hope,
and that hope has won.
PS: I’ll write one post on ‘Ask Tobias Anything’. So, welcome to leave your questions for Tobias on comment box or on private message. Thanks 😊 <<
“Always be joyful. Never stop praying. Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus.” 1 Thessalonians 5:16-18 NLT
“do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.”
Philippians 4:6-7 ESV
::: UPDATE ABOUT ME
2 Years 6 Months Post Biopsy
Midline Pontine Glioblastoma/DIPG Grade IV
On Wednesday, December 5th, I will receive the 21th round Avastin.
My symptoms are pretty much the same.
Please go to http://titien.de/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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