WHO AM I?

What is my value?

“One night, I opened Facebook and read my long time no see friend is very sick, poor her”, a friend of mine post on her Facebook (she meant me).
“Yes, I was also read her post, pity her”, a mutual friend commented.

I wonder if pity is the only thing they see in cancer warriors? I hope not.

In other occasions, many girls I know posted in social media (Instagram, Facebook, etc.) their selfie almost naked pictures, their new Hermès, etc.

I wonder if this is how they see their self esteem, how they create digital persona and hide insecurities? I hope not.

Seems society value a person’s worth on physical image, material possessions, and professions.

But the truth is none of these define our self-worth and self-esteem.

I am writing this not to judge anyone, but to share my thought, how I see what really matters in life.

::: WHO AM I?

I am not just someone with cancer, DIPG is not my identity, I am Titien.

I love children, I love teaching especially teach voluntarily. I like cooking and serving others. My heart smiles when I can support people in need. I feel meaningful by making a contribution. I enjoy chitchat with elderly, listen to their stories and life experiences. I cry when I’m angry or upset. I had ugly past but I forgave others and myself, and I live here and now happily.

Former interpreter for President and First Lady is not my self-esteem. My broad business network is not my self-worth.

My value is me as a person.

Very often we forget what most matters. We de-emphasize what is most important about us and we overemphasize what is relatively unimportant.

Very often we follow the standards (view of the fullness of life) set by human and society, and we fear if we couldn’t reach those standards.

::: A PERSON’S VALUE

An inspiring 19 years old girl participating in the American Idol, her voice was amazing. Her size was big, and she lost her friends in her early teenage years and isolated from society because of her figure. She had an illness that makes her fat not because of her living style. Her confidence was crushed but then she get up again. She reached out to disabled children with Down syndrome, a community that society may hard to accept. She taught them, sing with them, she brought love and joy. In my eyes, she is a very beautiful young girl with a golden heart, this is her value, not her size.

Another inspiring story from a lady I knew who are also fighting Dipg. She’s bald due to radiotherapy and chemo. But she’s not ashamed of showing to the world of her look and her condition. She’s getting married soon! She glows happiness. Being bald is not degrading the worth of a beautiful strong her. She is confident and loved.

A lady I just met recently told me she was in abusive relationship for 5 years. Her ex-partner was an alcoholic and she lost money from a property she bought with her ex. She had a very sad and tough childhood. Love and acceptance was missing in her life when she grew up, led her to unhappy relationships, bullied and abused. But one day 4 years ago, she decided to leave and start fresh. She forgave and moved on. When she shared her story, I didn’t see bitterness nor weakness but braveness. She understand what is women’s worth, she understand grace. Codependent was her past, was her label, but not her identity. A brave and loving heart is.

Another story that touches my heart is the faith of a mother who lost her son to Dipg. Start with first diagnosed, then treatments, hoping for healing but instead situations worsened. Her son then gained his angel wings despite all the treatment, time, love and prayer. In her lost, she wrote a very inspiring note, she shared her feelings and thought about her son and herself. Closing her note, she wrote “I never regret to choose hope in the journey… the journey has humbled me, softened and strengthened me…. We are just human, life and death go hand in hand….At the end of the day we’re only here to show each other love and be loved”.

Even though we experienced disappointment (unsolved problems, expectation failed, etc.), but we won’t die in it.

Even though we have many oppositions (people who walk away, not supportive, look down, judging, etc.), but we won’t let them oppress us nor holding us.

::: THE FULLNESS OF LIFE

Today after back home from the hospital I was so sad and crying. Sad because my white blood cells level drop instead going up, and injection, dr canceled the Procarbazin. I’m sad because it did not turn out as I expected, it looks like I’m not getting better. Disappointment and fear mix together and brought me into tears.

“I am here for you, I love you and we do this together”, my husband hold me.
“Tell me one reason why you love me”, I asked.
“Because you’re like an open book for me.. a beautiful book”, he smiled.

I am who I am.
I know what is love and what is loved,
I know that I am accepted, secure and significance. This is my pride.
Money, power, status,material and appearance can’t replace this.

I am experiencing 
Love saves
Love gives faith
Love gives hope
Love cast out fears
Love brings healing
Love brings repentance 
Love brings peace
Love strengthens
Love supports
Love comforts
Love forgives
Love is unconditional
Love is amazing
Love is priceless
Love is life
Love is eternal 

God made him who had no sin to be sin for us, so that in him we might become the righteousness of God. – 2 Corinthians 5:21
This is my worth.

I hope you understand what really matters in your life (not that cool car you’re dreaming of). Not chasing wind but found what makes you content. Embracing your days and be grateful. It’s ok to have mistakes, failures, downs, because you can come out and get up again. But remember time is priceless. So live with no regret, appreciate, be kind and be joyful.

To my fellow cancer warriors, when I see you, I don’t pity you, because I know you are fighting physical emotional battle with courage. You understand grieve and grace. You understand what life means. I cheer up for every progress you make. I feel you when your body is failing, and I believe that you’re not alone. Knowing who is with us is more important than knowing where we’re going, and this assure me that we can get through this.

Love, 
Titien


For God so loved the world, that he gave his only Son, that whoever believes in him should not perish but have eternal life. – John 3:16

“Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.” -Isaiah 41:10

“Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid.” -John 14:27

___________________________________________________________________________

WEEK 45 POST BIOPSY BRAINSTEM MIDLINE PONTINE GLIOBLASTOMA (DIPG) GRADE IV

UPDATE ABOUT MY TREATMENT:

Last week I had one of wisdom teeth removed. Surgery went well. However, I think dentist is the scariest doctor in the world.

Today blood test result showed further drop of white blood cells level to 2.3 (normal 4-10), chemo treatment postponed already 8 weeks.

So, I got injection to stimulate bone marrow producing more white blood cells. Side effects is bone pain.

Next Tuesday 3 April, I will take blood test again, hoping this time white blood cells level up.

If white blood cells level up, then green light for chemo. But this time only CCNU (dose reduced), and Procarbazin was cancelled. Though last time I cope well with CCNU Procarbazin, Tumor was stable, but dr said it led my white blood cells level drop.

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