IF ONLY YOU KNOW

Be present with what is left.

::: UPDATE ABOUT MY TREATMENT

This morning I met my doctor, Dr. Grüner at the Karlsruhe Klinikum. I will start again the second cycle of the second-line therapy: CCNU 120 mg/1d, pause 6d, Procarbazin 50mg/14d, pause 8d. Then after I finished the second cycle, I will have MRI. Hope this time treatment works, tumor shrinks!

Apart of my left shoulder and arm getting more stiff and pain, my other symptoms are quite stable.

For past 5 weeks I had this one sores on the left tip of my lips. painful when I open my mouth. But now is getting better with Bepanthene cream.

Past few days I also caught cold, seems my immune maybe too weak. I had runny nose and sore throat that worsened at night. I drank lemon honey tea these days, and today I feel much better.

::: IF ONLY YOU KNOW HOW I FEEL

Two weeks ago before I went to Barcelona, there’s one night I tried to cut my fingernails with nail clippers, it’s very difficult for my left hand hold firm and press the nail clippers. My left shoulder and arm was in pain. My husband offered his help, like always it’s him cut my fingernails since dipg affects my left hand. But this time I refused and upset.

It took awhile for me to finish cutting my nails, but I did it. Back in bed, tired and in pain, I can’t help but feeling sorry for myself, and very much upset to myself.

Then my husband asked what’s my plan on our next trip to Barcelona next week. He said that we will stay in the city center, so I can explore the city during the day.

I was silent. I rolled to the other side to avoid facing him face to face.

If only you know how hard it is for me to walk on the street alone, keep the balance, while also see things double, cried my heart.

If only you know, behind my smiling face, I endure 24 hours discomfort and pain.

If only you know, how much effort I have to make, just to carry plates and glasses from kitchen to dining table without falling.

If only you know, I love cooking but now it’s hard for me to chop vegetables because of pain with my left hand.

If only you know, carrying things like groceries now can only do with my right hand and only light stuffs.

If only you know, many simple things to do now is not so easy anymore for me.

If only … if only … if only …
My eyes were closed but I saw pictures of scenes that I was weak and depending.
I felt useless,
I felt I am nothing but just a burden,
I felt it’s better for me to disengage…

::: DANGERS OF DISENGANGEMENT

Yes. Disengage my husband, my family, my friends, my activities. Disengage myself with everything… and with you.

My guard was collapsing, tears coming, followed with a deep cry, it was a sound of a broken heart, sound of grieving.

I loose control, I cried loud, my heart ached. My husband was say nothing but holding me tight and cried with me. This time no words could comforted me.

After I somehow calmed down, I told him in tears how I felt about myself, and he answered me how he felt, how he saw me.

“You don’t have to be perfect, your presence is enough for me”, he said. “I will always be here for you”.

I let myself fall and show my brokenness. I know he is there to catch me. My husband’s love is my stronghold.

That week, as usual, once every 3 weeks, me and my bestfriends, Kayan (in Hong Kong) and Ashlee (in Singapore), were having a video conference. We’re updating each other about our lives, our ups and downs, our desire. We’re sharing hope and encouragement, advices and thoughts, and praying for each other.

I shared about my feeling the other night. Kayan reminded me “see yourself glass half full instead of half empty”.

I remembered that night I want to disengage because I don’t know what to do, how to deal, how people surround me see me. Disconnect and disengage seemed the only option.

::: BE PRESENT WITH WHAT IS LEFT

Disengage such a dangerous thing. I focus on what’s lost, I forgot what’s still left.

Fortunately, my husband and best-friends were not easily accept my disengagement. I have no chance but to share my burden and my downside with them, knowing they are here with me and still love me no matter what.

I think, it’s not about half empty or half full. It’s about what’s still left and how to make the most of it.

What’s left on me:
Although it’s difficult for me to explore the city by myself during the day, but nevertheless I managed to fly couple of times to Spain, took train to other cities. In the evening after work, my husband took me explore the city.

Although I am no longer able to go to work, nor teaching piano, but now I can write about my journey and hoping somehow my stories could be a blessing.

Although it’s not easy to do things with my left hand. But I cook more than before and it’s my joy to see my husband and friends enjoying the food I cooked for them. It’s delicious!

Although I cried a lot and in pain, but I found out that I smile and laugh more than before, I am telling jokes with husband and friends more than before, I am happy and my home is full of joy.

Although I was sentenced months to live, but since I had biopsy in May 2017, I managed to travel a lot, including road trip to Denmark to celebrate Christmas, back home in Germany to celebrate New Year 2018, and celebrate my husband’s birthday on 9 January. I achieved my short term 3 goals that in the beginning I was skeptical. I’m still here and happy. One day at a time, meaningful for me.

“You are a living miracle, because on your journey we’ve seen many good things happen. And your three goals for last year came true”, said Kayan.
“Your journey has become a blessing for me. It affects my life”, Ashlee encouraged.
“Set new goals for 2018”, they said.
“I will”.

I learned to see what’s left in me. When I awake, good day I have, when I do my plans, miracle happens.

To my fellow cancer warriors (patients, spouses, families and friends), do complain, do confront, do cry out, but do not disengage. It’s okay to be broken because we are fighting the battle. We don’t have to be perfect, but be present with what’s left.

Praying and hoping to God for our healing and restoration, for His grace guarding us on our battles in life. For much love and miracles in our days.

May what’s left in us, although few, but can bless many. Like the miracle of 5 bread and 2 fish feed the 5000 (Matthew 14:13-21)

Love,
Titien

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