20 August 2014 - Hati yang Gembira adalah obat

Dikala keadaan mungkin susah dan sulit, kiranya Tuhan yang boleh menghiburkan dan memberi hati yang bersyukur dan bersuka cita.

A word from my little heart - a Reflection to my Brother Illness

Perpisahan.

Panik, sedih, hancur hati, tangis, ketika mengetahui bahwa akan ada perpisahan yang sangat nyata didepan mata dengan sodara yang selama ini bersama sama menghadapi suka dan duka dalam setiap perjalanan hidup keluarga.

Yups, kanker terasa seperti satu kertas kematian yang sudah ditanda tangani dan informasikan melalui dokter.
Stadium-stadium dalam kanker yang membedakan berapa lama perpisahan itu akan datang.

Sering kali terlontar pernyataan, apabila kanker itu dialami di masa tua yah relakanlah, karna memang sudah waktunya untuk menghadap yang Sang Maha Pencipta.
Tetapi jikalau yang masih muda mengalami nya, ratapan, rada kasihan karena betapa singkat usianya, tidak adil rasanya harus sedemikan cepat kembali, masih panjang hidup yang harus dijalani nya.

Lantas sesungguhnya, apa yang menjadi tujuan hidup manusia? Apakah dilihat dari lamanya hidup didunia baru dikatakan dia sudah untung?
Dalam dunia yang penuh dengan tantangan ini, bukankah jikalau boleh banyak yang memilih untuk tidak usah dilahirkan karna perjuangan yang begitu keras dilakukan untuk hidup di dunia ini?
Bagaimana dengan Kristus yang hidup 33thn, gagalkah Dia karna begitu muda umurnya dipanggil?

Pernahkah terdengar bahwa "cancer is just a word not a sentence". Kanker hanyalah kata didalam kalimat, menandakan bagaimana tetap berpikir positif didalam sakit penyakit ini. Namun atas dasar apa kita tetap berjalan positif? Atau, bisakah kita tetap berpikir positif saat kala sakit menusuk ditulang? Saat segala sesuatu tidak ada yang enak?

Tidak ada jalan yang lain, memang hanya dengan memandang kepada "Salib" yang bisa menjadi tumpuan hidup.

Apakah ini penipuan diri? Pelarian diri?
Tidak.

Bagaimana jikalau selama hidup didunia ini tujuannya adalah untuk membuat kita semakin serupa dengan Kristus?
Tuhan yang Empunya kita tentulah Maha Tahu untuk apa hal yang bisa mengasah kita semakin hari semakin hidup serupa denganNya.

Jikalau demikian, bukankah sama pada akhirnya jika kita hidup 3thn, 30thn, 33thn, 53thn, ataupun 73thn?

Tujuan hidup manusia menurut katekismus adalah Memuliakan Tuhan dan Menikmati Dia.
Dalam menghadapi perpisahan dan kematian yang didepan mata pun, jikalau kita bersandar kepada Tuhan, kita akan dimampukan memuliakan Tuhan melalui puji-pujian dalam mulut bibir kita. Nikmatilah waktu waktu berbicara dengan Tuhan.

Apakah tidak sedih? Hanya orang yang mati emosi yang tidak merasakan kesedihan, ketakutan akan kehilangan.
Diriku sedih, terbangun ditengah malam dan gentar terhadap perpisahan kematian ini. Aku menangis dan bertanya-tanya siapkah aku?
Jawaban kucari dalam dunia, tontonan lucu mengalihan sejenak pikiranku, tp apa jawabnya?
Tetap adalah Salib Kristus. Pengorbanan Kemuliaan, Penderitaan dalam Salib itulah yang bisa menjawab nya.

Menangislah sejadi-jadinya, sesudah itu hapuslah air matamu dengan Doa, dan percayalah kekuatan akan memampukan kita.

Terdengar Klise?
Hanya anugerah yang akhirnya memampukan kita melihat lebih dari itu.
Berdoalahlah biar Tuhan yang membukakan mata rohani kita.

Siapakah kita? Hanya keturunan yang diciptakan oleh debu. Namun yang diciptakan baik menurut rupa dan gambar Tuhan.
Debu, mudah hilang, namun Berharga karna serupa dan segambar dengan Tuhan. Rusak karna dosa, hanya Salib menebus kita, diasah untuk kembali serupa dengan Nya. Saat semua sudah selesai, dipanggilNya untuk bertemu.

Bukankah itu pengharapan yang indah? Rasul Paulus bukankah juga berkata bahwa hidup dalah Kristus dan mati adalah keuntungan.

Lantas apakah arti hidup ini jikalau umur panjang diberikan sampai akhirnya binasa?

Apakah artinya menyerah saja?
Hidup adalah perjuangan dalam Kristus, satu haripun kalo dapat membuat kita memuliakan Tuhan, membuat kita serupa denganNya, bukankah itu layak diperjuangkan?

Aku mengasihinya, aku ingin hidup lebih lama dengan nya, tetapi melebihi semua nya itu, kita harus sadari bukan bahwa yang terlebih penting, dia memang sudah berada di Tangan Sang Empunya?

Mengapa kita baru belajar hanya karena kita sudah didepan perpisahan kematian?
Lebih baik belajar daripada tidak sama sekali bukan?
Bagaimana berjalan satu hari demi satu hari dengan Tuhan? Menghidupkan iman bahwa cukup hanya dengan Tuhan saja?
Apapun kondisinya, Bukankah ini juga kesempatan terus menghidupi Firman Tuhan?

Kesempatan?
Yups, Kanker itu juga kesempatan! Kesempatan untuk masih boleh menghidupi Firman Tuhan.

Tetap semangat, jangan biarkan kanker membuat murka duka dalam keluarga.

Pada akhirnya Pujilah Tuhan bahwasanya kasih setia untuk selama lamanya.

Ya, kasih setia Tuhan!, percayakan hatiku?!

Friday 30th May - William's 2nd Hospitalization

Last wednesday we just have a regular checked with doctor and everything was in a stable condition.
Just in early friday morning my brother suddenly felt nausea and when he vomit, all blood.
And not happen once, but twice. On that moment we grab the chinese medicine to stop internal bleeding.

At 9am we arrived and Doctor decide for him to get hospitalized.
On the afternoon, the 2nd time endoscopy being performed and the Doctor show me the varices esophagus on screen. Done 6 band ligation. This is part of palliative treatment.

Next thing to do, Diet.
Only drink for 24hours, and yeah he felt hungry (that a good feeling actually), then start slowly with puree.

Right now, we just hope his condition getting better.
Prevent him on having cough, nausea, etc which can give high pressure and lead to blood vomit.

2 in 1

28 March 2014
Early morning my brother called me, " I got problem on my liver".
"What? See, cause you never listened when we asked you to take care of your health, now, how can you study well. Sent me the detail."

Afternoon, Calvin arrived home and shout "hey, it's so big, I saw the USG result that your brother sent to me."
Suddenly I realized this will become another serious problem to deal with in our family. I told my brother for flying back to Jakarta on Sunday and I will bring him to doctor.

30 March 2014
After Sunday service, we wait on the airport.
First time I saw him, my heart aches, he look pale and sick, with a short breath, hard to walk. Calvin quickly took his bag.
He didn't want to make our mom worried, so we went to serpong and till he met doctor he will stay at my place.
At night I explained roughly about his illness. From the medical side, there will be no treatment available. What he can do was pray, be strong and try to eat well so his condition could be better.

31March - public holiday.
He show that he try to eat and rest well.

1April 2014
Schedule with the doctor - RSCM Kencana - SpPd, KGEH, at 3pm.
Doctor asked my bro for MRCT-scan and Blood test, stoll test.
Medical Diagnosis: Hepatocellular Carcinoma. Yups, Carcinoma.
But doctor didn't talk much about the illness and the treatment as he wait for the data.

The title - 2 in 1 actually stand for:
2 Years, 2 Persons, 2 Types of Cancer in 1 Family.

The thing that I most afraid is How we gonna tell our mom and what will become her reaction.

My brother is the only son in our family. She put hope on him, but after finishing the chemotherapy, she finally let my brother took study on theology.
One of the reason for her to fight the cancer is too see her son get married and finished his study.

Ok, why I'm so lack of confident and conclude there was no treatment even doctor didn't said anything yet.
First the Tumor size - greater than 15cm. Second - my bro have a hep B carrier.
99percent I'm sure we have to deal with another cancer.

2April 2014
Early morning he throw up and look very bad. I gave him a drink and bring him to the nearest hospital in serpong which have the mrct scan machine. My thinking, while he got infusion, they could check his blood and if he got better, he could have the mrct-scan.
Blood test result show that the red blood cell measure on "5". Below 8, need transfusion. Another thing, his leukocyte was 20.000 (normal 4000-10000).
We decide to hospitalized him and get transfusion and antibiotic injection.
As his stool was black and suspect there were bloody inside the body.
The mrct-scan was done on the day also.
The doctor assigned was internist which available at that time.

3 April 2014
He got blood transfusion the night before. But the side effect, my brother got fever. In the morning they checked the temperature and gave paracetamol injection.

Near 11.30 am, I felt something wrong and I touch my brother forehead and call directly for the nurse. They checked and the temperature was 39 up. I request the nurse that they shall checked regularly for the temperature as they know the side effect was fever. The nurse answered me "We will checked if there is complain from the patient." This the first thing I felt so unprofessional. They shall have the schedule to check the patient, especially with the patient with highly side effect. How about the patient didn't know and couldn't call the nurse?. I don't want to think it's because we took the 3rd class room.
On the afternoon, he could pup, but our request for stool test was not done.

4 April 2014
Near lunch time, the doctor visit and I met with him. I asked about the target condition, he said that the red blood cell to normal, and maintain infection.
When I asked how do we know cause we didn't have a blood test. Doctor answering me that he was not someone who has no other job than testing blood for 6 to 12 hours.
Heh? In my heart I know I shall quickly change doctor or hospital.
Come on, from 2 april to 4 april no blood test done, how do we know the antibiotic injection work out? How do we know the blood transfusion have an impact. I know that only data, but my brother condition seem not change and data could show something at least.
I still discussed longer about my brother illness. He said there were no treatment and the expectancy for life was 6 to 12 months. Then he said that we can go to Singapore and try a lot of thing and still no result and die, that not something he want to do. When I asked if you said we shall improve the quality of life, then what is your suggestion, he didn't answered it. For us family who was not in too good condition, how he explained thing was not showing empathized and I felt that he just want to showed off?.

When I told Calvin about this, he pushed me to took my brother out of the hospital. But still I said, wait for tomorrow cause we were in the middle of transfusion and moving to other hospital was not an easy thing also.

5 April 2014,
Early morning my sista went there, and finally they did another blood test and my sista informed me:
Red blood cell show no difference still 5 after 750ml blood transfusion.
Leucocyte jump higher from 20.000 to 28.000. What????
That means my brother condition didn't change even got worse.

And what even worse, my brother have a diarrhea and felt so week.

Quickly I search for another doctor and went to other hospital in Jakarta - Private Cancer Hospital. After discussed with the doctor, I think I found the right person at the moment to handle my brother then we complete the administration. By looking at the blood test data and our explanation about the condition, doctor suspect that my bro might have internal bleeding.

To get the letter we shall wait the doctor came till 5pm, and when arrived the doctor checked the stool test (which we request from 2 April but done on 4 April night, that also we insist to having it checked), and said suspect for internal bleeding. My question, why they didn't get it done once my bro could pup.

Anyway we will check out soon, so don't brother what the doctor might suggest.

Then, the admin sent to the new hospital. We request for the ambulance cause my brother short of breathing from the morning.

When my bro told the doctor, the doctor said, why don't you used the oxygen, it's being there from the first day. What? No one told my brother to used it, not even the nurse. Can't they see or examine the patient condition?. Ok don't brother it anymore.

The other ridiculous thing, while waiting for confirmation, the nurse came and asked my brother whether he want to took the anti constipation medicine. Of course NO. Come on, we told the nurse in the morning that my brother keep going to the toilet for pup. It's might because this medicine.

The hospital always said that they were ready once they got confirmation from new hospital. But guess what? Once they got confirmation, my brother shall wait for the ambulance driver!

If only there were emergency patient, I guess the patient died first waiting for the driver!. Lesson learn, Shall checked the hospital with professional Emergency Room and put the information update.

Arrived at 11.30pm. Sigh, If I know how the situation will be, I will directly bring my brother, and we already arrived at 7.30pm.

They took another blood test and start giving medicine - another antibiotic.

6 April 2014

Early in the morning, they took another blood test. By lunch time, we could see, the leukocyte going down from 28000 to 15000. I could assume the antibiotic work. (the prices of this antibiotic similar to the one previously inject. around 1 million rupiah, IDR, up. Not cheap, a broad spectrum antibiotic.) Why the blood test need to be done, cause we might want data to see whether the antibiotic work or not, yes/no?. 

My brother face look fresh.

7 April 2014 - 11 April 2014

My brother has done the endoscopy procedure and he has an esophagus varices.

My brother being treated and getting well day by day.

On 11 April night, the doctor explained all the thing that my brother want to know. About why it's carcinoma not adenoma? where is the location? what the possible treatment available? and the life expectancy.

And of course can he check out from hospital on Saturday 12 April.

On 12 April 2014. 

When my brother condition went well, we have upcoming task to do. Told our mom about his real condition and decide on what possible treatment.

The battle is just begin. Not an easy one, but put the trust on God, and be strong.

P.S. I try to wrote everything which I still remember. Hope we could learn something from here. 

I might point a lot of thing that previous hospital done. Again, different illness need different treatment too, and may be they still not being ready for treating terminal illness like my brother have.

6th Chemotherapy - Finally the 1st Cycle Done! and the Result so far.

3th April was the date!
Still owe the story and list of medicine of the 5th chemotherapy.

Laptop need to be cured cause one of the cable inside broke due to Josh *sigh*.

Anyway, the last chemo really make us curious what will be the result.
Since this was the last chemo on the 1st cycle, my mom barely complaint of anything.
She just gone through it, even with lot's of pain.

Today, 23 April 2013, we visit doctor looking the result.
Stable disease - Partial Remission - that my mom condition right now.
The Cancer cell still there, not growing yet not shrinking.
One month from now, we could have a PET Scan for confirming result.

Honestly, I didn't want put too much expectation. That's why, I still wait for the PET Scan result to ensuring what we will do next.
My mom have a neuropathy side effect, damage on her sensory nerve where she felt numbness and tingling on her hand and foot. Hope it's was temporary.

That's what I could share right now. Hope she could feel better.
Me and Mom with lil Josh will watch circus tomorrow ^^/ to entertain our self. Will share about this :)

4th chemo - What I feel and What my mom might feel.

Kurang dari seminggu, Mama akan menyelesaikan Siklus Chemo yang pertama.
Tentu hati pun deg-degan.

Cerita mengenai perjalanan Chemo ke 4 mama, saya rangkum dibawah ini.

Mama tinggal denganku sesudah Chemo ke 4 selesai.
Seperti biasanya, kita sudah hafal apa saja efek samping yang akan dirasakan:

Hari 2-4
Seluruh badan terasa sakit, seperti ditusuk oleh jarum jarum.
Terkadang tidur dikasur yang hangat membantu mengurangi rasa sakit. Kebetulan papa mertua beli satu set kasur batu yang bisa dihangatkan. Awalnya untuk Calvin yang sakit pinggang, tapi koq rasanya membantu mama untuk tidur.

Hari ke 5-7
Pencernaan mulai terganggu. Pup mencair dan seperti diare.
Hari-hari tersulit, susah makan dibarengin oleh diare, tanda bahaya dehidrasi menjadi prioritas.
Membujuk makan dan minum walaupun hanya sesuap.

Hari ke 8-10
Perlahan kondisi badan mulai membaik.

Day 11
Kondisi tubuh balik ke normal, dengan berat badan berkurang.

Day 11-21
Hari penambahan nutrisi badan dan berat badan ^^.

Siklus ini seperti berulang terus menerus.
Tidak ada yang bisa dilakukan untuk meniadakan, hanya cara untuk tetap bertahan dalam kondisi sulit tersebut.

Hari tersulit bagiku sebagai orang tidak mengalaminya adalah hari ke 6-7.
Tidak hanya tenaga tetapi pikiran dan emosi semua larut didalamnya.
Secara tenaga, kita mesti membujuk beliau makan dan minum. Selain itu mesti berusaha menenangkan pikiran mama. Kesabaran dibutuhkan dalam masa ini.
Mama akan mulai mengeluh kenapa Chemo sangat susah, kenapa dia harus mulai chemo dan banyak orang diluar sana yang survive tanpa Chemo dan sebagainya.
Terus terang, sampai hari ini aku terus merasakan bahwa sesungguhnya mama tidak pernah bisa menerima dirinya harus di Chemo, tapi siapa diluar sana yang pernah benar benar mau dikemo??
Tentu kita harus berusaha menerima jalan yang kita pilih, tetapi ada kalanya disaat merasakan sakit yang paling susah, akan lebih mudah bagi kita untuk menyangkal pilihan kita dan berharap akan jalan lainnya.

Aku mencoba memahami apa yang sebenarnya tidak akan pernah aku pahami, maka dari itu, akupun gagal didalam mendukung mama secara emosional.
Jikalau mama merasa trauma dengan efek samping Chemo, saya pribadi merasa trauma saat melihat bagaimana pribadi dan pikiran mama menghadapi efek samping tersebut.
Mama yang kutahu adalah seseorang yang kuat dalam menghadapi masalah. Tetapi kenyataan yang kulihat saat ini berbeda jauh (mama jarang sekali sakit dan mama takut sakit), jadi mungkin saat ini, mungkin saja saya yang tidak bisa terima kenyataan bahwa ternyata mama lemah dan butuh bantuan dalam menghadapi efek samping Chemo ini.

Pada hari ke 7, aku menyerah dan menganjurkan mama untuk ke rumah sakit. Aku selalu menghitung kecukupan apa yang mama makan dan minum, dan merasa bahwa saat itu tanda dehidrasi sudah didepan mata. Tetapi mama menolak dan marah dengan keputusanku. Untuk diketahui, setiap kerumah sakit, berarti bertambah biaya yang harus dikeluarkan dan biasanya itu tidak sedikit, dan mama menghindari hal tersebut.
(mama masuk rumah sakit pada saat Chemo pertama dan kedua, dan biaya Chemo menjadi berlipat ganda).
Setelah itu, mama berusaha memaksa dirinya untuk minum lebih banyak, dan seiring hari berlalu, kondisi beliau semakin baik.

Terlepas dari segala kesalahpahaman yang terjadi, dalam segala kesulitan yang dilalui, aku berharap aku mendapat pelajaran untuk menjadi manusia yang lebih baik lagi.

Next story - Chemo ke 5, bisa dikatakan Chemo yang dihadapi dengan lancar (oh bukan tanpa efek samping). Aku akan coba share obat-obatan mama dan makanan apa yang dikonsumsi selama Chemotherapy.

========================================================================

A week less from the last treatment of 1st circle chemo.

Come to an end, really feel nervous.
But I still owe some stories behind.
So here the stories of 4th chemotherapy.
My mom stayed with me after the treatment.
Like usual, the cycle as below:
Day 2-4 - mom felt hurt on all her body.
Day 5-7 - impact on my mom digestion. She will keep going to the toilet, very similar to a diarrhea.
Day 8-10 - the body slowly get better.
Day 11 - you back to normal, with less weight.
Day 11-21 - you need to eat normally, to gain weight, to add more nutrient to your body.
It's like a repeating cycle.
For me as outsider, the most difficult day is on the 6-7th.
You need to persistently persuade her for drink enough and eat even just a bite.
Beside, you need to cope with "the mind". Patient is needed on this kind of moment.
My mom will start to grumble how hard the chemo was, wish to never start the chemo, etc....
Honestly, I felt my mom never really want to have chemo, but tell me, who really want it?
Of course you need to accept it, but if you are on the very deep pain, somehow, may be it's easier for you to deny it and wish the other way.
Again, I'm not someone on the illness, therefore I just tried to understand what I never truly understand it.
Therefore, I'm failed also to support her emotionally.
If she get traumatized for the side effect, I get traumatized on seeing her reaction toward the side effect.
I never found or seeing my mom so week on facing a problem, as far as I know, my mom is a very brave person. But this totally different from what I saw now, so somehow, may be I'm the one also who can't accept the reality that my mom actually need lot of help to go through the side effect's pain.
On the 7th day, I gave up, and told my mom that I will bring her to hospital, cause I'm afraid that she get dehydrated. I always count what she eat and drink, so I could say, what she drink less than needed. The situation differs from the 3rd chemo where she listen to my word to drink more.
Anyway, she refused it and get mad with me. For you to know, each time you get to hospital, means you spent another fee, that's what my mom want to avoid now.
At the end, my mom could push her self to drink more and day by day pass and she get better without being hospitalized.
In spite of all the misunderstanding, all the hardness we gone through, I hope I'm learning on how to become a better human who have a passion toward other.

My mom 3rd Chemotherapy - suspense week

Here the story

as usual, the 3rd day, my mom told us that all her muscle in pain.
Till the 6th day, my mom still survive at home without any side effect than the body feels tired, muscle pain. Yeay, that's a good news.

Then....... something happen on the night 10pm.

My mom felt nausea. Then she throw out all the food.
She got panic, and what worried us happen, stomach pain, increase flatulence (gas), and every organ in stomach related, hurt.

First we gave her, Domperindone 10mg to prevent her from vomit again. But seem need time to work.
Then I remember, once doctor said, to work with Inpepsa, I need pantozol (pantoprazole) to treat high level of acid in the stomach. Then we gave Pantozol 20mg.
My mom went to sleep at 1am after drink her sleeping pills.

Till 3am in the morning, she still felt hurt, a heartburn or hurt in the esophagus area.
Even I said to her that in the morning if she can't hold it anymore we can directly go to hospital, but seeing her in pain, urrgggg.....
Then I remember, I have a copy of drug given during my mom in hospital, searched it, and found Rantin - and browse to make sure that the correct medicine. Ask my sista to buy it. Thanks God, we could found it.
Rantin 150mg - relieve all the pain. Mom back to sleep till 6am.

7th Day, Morning,
Now as she felt no heartburn anymore, she kept complain that she felt hurt on the stomach and went to toilet for pooping everytime she felt hurt.

Now, it was come to psychology thing. My mom mind keep panic and she can't control it.
This the time to decide whether she want to be hospitalized or not. But she couldn't gave us a decision too. Yes, hospitalization fee is expensive, therefore she want to hold it as long as she can, but she also kept complain of the pain. Before she always think that why other people who she know also on the cancer treatment didn't feel any pain like her. That's worsen my mom condition when she couldn't accept the side effect and kept compare her self to other.

As I remember, doctor has prescribe Ativan for my mom. But couldn't find it in a lot of medicine store -out of stock, including in 3 hospital near our area.
Till 2pm, she kept complain why the pain didn't go away. While according to my eyes, I felt that the condition getting better, just need time. Again I took another leap, switch the drug from Ativan into Xanax. They were same family, work differently, but both to treat anxiety related disorder.
At 3pm, We gave one 1mg of Xanax. Everytime the pain goes away, my mom could sleep and rest.

On the night, she said the pain still there but it was not similar to the first chemo side effect.
Then I consult doctor for letting my mom have pain killer drug - Kaltrofen at 10pm. and also Imodium to control the diarrhea.
She could sleep for 6hours - that's make her much much better. Wake around 4am to took a food and sleep again till morning.

Friday - 8th day,
Wake up with better condition even the intestine work so fast, so we took Imodium again.
And yes, everything in control.
Enough sleep will help you to think better.

But, now it was my turn to took care of my lil Josh.
He got HFMD, argggg....
Honestly, I have no idea where he got this.
His mouth full of ulcers, he cry everytime he ate something. Will tell in other post later on.

What I realized, even we keep busy with the illness stuff,
but there nothing to arduous when we walk with God.

Me especially felt that God has been so nice to me, only gave me one illness person at a time.
For people who know me, I easily got stress on a high tension day.
Ok, time to recharge my energy for taking care of Josh.

My Mom 3rd Chemotherapy

Heeeee, already on the middle of Chemo Cycle.
Honestly, my mom seriously want to drop the chemo treatment.

I haven't share on this blog. During the 2nd Chemo treatment, my mom got hospitalized again! in Pantai Indah Kapuk Hospital.
The problem was my mom get nausea all the time even though she consume anti nausea medicine.
She hard to eat which impact on stomachache.
She began to felt anxious and it's worsen her stomach condition.
The only way out was to bring her to hospital.
On the hospital, my mom got a medicine to cure her anxious and her stomach.

Here I share a lil bit of what I learn about "knowing your medicine" during my mom hospitalization time.
Ativan drug given to my mom on the first day. On the 2nd day, I'm asking my mom what she felt. She told me that she felt no energy but her stomachache reduce significantly. So I told my sista to stop the Ativan drug.
I knew I'm not doctor, but I have my reason. Ativan is like anti depressant drug but the side effect was you felt no energy somehow, and felt sleepy all the time.
When my mom could control her self, I think it's better to stop that drug. When the drug is stopped, my mom felt better - more energy - not feeling sleepy all the time.
Somehow I learn, medicine was to be used only when needed. If you feel better already, you can always request to the nurse what medicine to be discontinue. Therefore it's really important to know what medicine was given during your stayed in hospital. There a lot of patient to be controlled each day by the nurse, they need to called to the doctor also. It's might be good if we could actively participate on the treatment of our illness - by asking the diagnose, the medicine name, then searching the usage, side effect, etc. Cause the side effect differs from one to other person, and somehow impossible when doctor and nurse explain all to you.

During that days, my mom told several time that she want to stop her chemo treatment.
Yes, we were ready whatever her decision.

It's wasn't easy to have those treatment.
You can say you put a toxin into your body. It's kill everything and it's hurt!
While it's really cost you a lot.
Something in the world where you pay it and wish to cure you but you get pain from it -> Chemo!
But again, my mom changed her mind after she could took time to think it over.

The 3rd Chemotherapy was yesterday and tomorrow will be the first day she felt the side effect.
Again, we hope nothing serious cause actually the 2nd chemotherapy was better than the 1st one. Therefore we hope by experiencing it twice, we could manage the side effect from home.

My Mom 2nd Chemotherapy

Last Friday - 4th January2013, my mom got her 2nd Chemotheraphy.
The list of drug who got into my mom blood vessel similar with the 1st one, except she need extra eprex for inducing the red blood.
Brexel 150mg
Rexta 120mg
Paloxi
Leukokine
Eprex 40000iu.

What make me wondering, the price increase!.
Since daddy who manage to order and paid the drug, he didn't realize it until I told him.
We still need to verify it, whether there is a wrong price given to us.

Ooo, If you stayed in Indonesia, we could check of Chemotheraphy drug price through:
Yayasan Kanker Indonesia
YKI Sam Ratulangi Phone: +62 21 315 2603, Fax:+62 21 310 8170, ykipusat@gmail.com.
You could buy the drug there, but you need to have original receipt from your doctor.
Government Hospital like RSCM could let you borrowed the drug from outside. You can compare the pricing first.

For me, I have compared it for the 1st Chemo, and the different was only a little, that's why I ordered it though someone suggested by the doctor.
But for the 2nd Chemo, the price going higher more than I calculated.

Anyway, that just some information to share :).

Ohh, my mom condition was dizzy now. Hope she could get through the first week without anything serious.

My Mom 1st Chemotherapy - the 1st Week

A first week of chemotherapy update:

Day 1 - almost 12 hours spent on the hospital

Day 2 - look like a wonder woman, could do the cook, etc. I wish my mom keep her strength for the side effect later on.
Drug: Celebrex 1 a day, Antibiotic (left from the chemo port operation)

Day 3 - Yup, the side effect started. Feeling week, and on the night, my mom felt a Muscle and Nerve pain. Still eating well.
Drug: Took anti nausea in the morning, Celebrex, and Antibiotic.

Day 4 - the muscle and nerve pain keep on going all day long. But my mom keep positive, she always done her simple exercise activity, and having a sun bathing for a while in the morning.
Drug: Anti nausea and Celebrex
! we change her food plan, and my mom sleep without air conditioner.

Day 5 - the pain slowing down now. I asked my mom to took a calcium supplement as I'm afraid she was lacking of calcium due to the vegan eating way.
Drug: Anti nausea and Celebrex
! I'm noticing that after taking one of the chemo drug - Rexta, my mom shall be stay out from cold thing.

Then, Unexpected side effect occurs.
Feeling full of Gas, Cramp, diarrhea, lower abdominal pain, suddenly came.


From chemocare.com:
Chemotherapy may also alter the normal bacterial flora that is present in the intestines. This can affect digestion and cause abdominal pain, cramping or flatulence (gas).

I always monitor my mom bowel movement and she said that only twice a day which on my mind that normal. But what I saw this afternoon after I took a nap, really not normal at all. She felt hurt.
Short message to the doctor and being given a additional drug recipe
-> Inpepsa 3*15ml
-> Buscopan 3*1 (contains 500mg paracetamol)

Day 6 - The cramp, diarrhea, lower abdominal pain keep going all the night.
Short message to the doctor and another additional medicine:
-> Immodium 2tablet each time (anti diarrhea)

Took one time and relieve the diarrhea symptom. However, the lower abdominal/stomach pain keep going.
Ok we pray may this pain just happen till tomorrow.
The worse thing about this lower abdominal/stomach pain, is because everytime it's happen, my mom felt she want to go the toilet and sit for around 20-30minutes for doing some bowel (the stool has a mucus) and till the pain go away.

Day 7 - Nothing change with the lower stomach pain.
Short message to the doctor and add one more celebrex.
You can use this Celebrex up to 400mg a day - 2 tablet.
I gave my mom in the morning and on the noon.
During the noon time, when she awake, she suddenly said all the pain goes away. She can still smile and we took a picture of her with Josh wearing a deer headcraft - ready for Christmas.

Heeee.... within half an hour, she complain the pain coming back.

Ok, this really worse, I gave her buscopan on the midnight, nothing change. Every hour she awake and go to the toilet and wait till the pain go away. I seeing the intensity of going to the toilet increasing.

Day 8, 21 December 2012 - At 5am in the morning my mom drink another dose of Celebrex. But seem the pain getting back.
See you can only took two tablet a day, but one tablet give a relief only for two hours, don't it seem the drug didn't work at all?
My mom couldn't sleep all the night, make her tired and suffer.
We called the doctor and decide to took my mom to Hospital.
! Good thing, my mom still force herself to eat. Only she said she tired and lack of sleep can make her tired to eat also, I really think being hospitalized is the best solution now.

At the hospital, they gave her an infusion of vitamin, paracetamol, etc. According to my sista, it's giving a relief of the pain.
Hey.... seem the pill drug that my mom consume at home can't be absorb well cause changes of the flora in my mom intestine imbalance.
Anyway, still wait for the doctor to diagnose.
Hope nothing serious.

My Mom 1st Chemotherapy - at RSCM

13-12-2012 was the date when my mom has her 1st chemotherapy at RSCM.

The drugs was:
Rexta 150mg
Brexel 120mg
Paloxi (for anti nausea)
Leukokine (for increasing the leucocyte - white blood cell).
Price? Definitely much more expensive than a gold - you name it!. But that still moderate, I heard another name of drug which much much more expensive.
(browse mims for detail of drug information, but you need to sign up first)

We arrived at 9am, but since we must wait for the protocol, then I guess the chemo start at 11am.

My mom was accompanied by Calvin n my lil sista.
Me and josh stayed at home, cause Hospital is not a good place for children and he can't stay quiet also.

Oh, we shall finish all the administration (the payment also) before, it's a rule from the hospital.
Compare to the private hospital, we only need to put a deposit (forget how many percent from total expense) before treatment.
For the next time we shall finished the administration a day before so the chemo could start right away when we arrived since they get the protocol in hand.

How long?
6 hours for Rexta and Brexel.
Before chemo they inject the paloxi and after chemo they inject the leukokin.
Why took so long? They explained that this was my mom first chemo, therefore they slowly put in the drug, so when the allergic reaction show up, they could took an action.

Mom's body reaction?
Pee a lot. Poo a lot also, happen when my mom drink a vegetable juice and coconut water. Therefore I gave her a banana for the night meal including the 20gram whey protein drink.
For the first day, she haven't felt any nausea and that's good.

Doctor informed me that my mom will feel the drug effect after 2-3 days. Let see how's my mom condition.
Meanwhile, we keep on our food plan and hope to keep the nausea away.
We also stop the herbal for a while, except the curcumin (kunyit, kencur and temulawak) and still consume the whey protein.

Thanks God for today, we couldn't ask more.
We just pray may God give us strength to walk upon this condition.

Chemo Port - Done at RSCM!

Kita memutuskan untuk memasang chemo Port berdasarkan diskusi dengan dokter onkologi. Mempertimbangkan pembuluh darah mama yang relatif kecil, alhasil untuk menghindarkan rusaknya pembuluh darah akibat chemo, maka dipasanglah chemo port - Celsite produksi B-Brown.
Pemasangan dan penggunaan alat ini bukannya tanpa resiko, oleh sebab itu dalam memilih bagaimana cara perlakuan chemo, sebaiknya mempertimbangkan hasil konsultasi dokter + bacaan artikel + kondisi pasien.

Pemasangan Celsite dilaksanakan di ODC (One Day Care) RSCM.
Operasi dimulai dari jam 13.00 sampai 14.30. Sadar sekitar jam 15.30. Terjadi rembesan darah, sehingga perlu tambahan sedikit jahitan. Siap pulang sekitar jam 17.00

Ok, sekarang berbicara kesan terhadap RSCM yang notabene adalah rumah sakit pemerintah, boleh dikatakan semakin baik.
Pra Operasi:
Di klinik ODC RSCM diterima dengan senyum ramah (mmm kayaknya kesan awalnya RS pemerintah orangnya jutek-jutek, tapi ternyata tidak sedemikian), diberikan informasi yang jelas. Beberapa kali bertanya pun dijawab dengan baik. Walau ruang tunggu tak berAC dan bangku duduk yang seadanya, tetapi jika dilayani dengan senyum siapapun kurasa akan merasa lebih nyaman.
Pasca Operasi:
Mama diistirahatkan diruang pemulihan. Saat itu terjadi rembesan darah, namun dengan tanggap para perawat diruang pemulihan itu mengganti dan memanggil dokter. Setelah diperiksa, diperlukan tambahan jahitan kembali. Saya pribadi merasa para perawat itu ramah dan full of fun ditengah kelelahan yang ada dan tetap melaksanakan tugasnya.
Seinformasi yang kudapatkan dari brosur bahwa hanya ada dua ruang operasi untuk ODC service ini. Dan biasanya berakhir sampai jam 15.30. Tetapi karena ada saja pasien-pasien yang mungkin terjadi seperti mama, mereka biasa menunggu sampai tuntas.
Dari cara perawat menunggu mama, menolong mama, saya merasa para perawat disana itu sabar-sabar.
(hmm semestinya memang perawat sabar yah, tapi koq kayaknya saya sudah terlalu sering mendengar bahwa seringkali di rs pemerintah perawat kurang sabar, jadi rasanya amazing banget kalo ada perawat yang sabar :p)

Sekarang berlanjut ke harga:
Harga Celsite sendiri sekitar 6jtan. Total operasi +/- 18jt di ODC RSCM.
Dibandingkan dengan RSCM Kencana (swastanya RSCM), yah jelas di ODC RSCM bisa lebih murah sedikit, tapi tak jauh (tak seperti bayangan saya, kecuali anda pemegang kartu jamkesmas yah!).

Hanya saja, yang cukup menarik, sempat membandingkan harga yang diberikan oleh Rumah sakit swasta di Penang, ternyata harga yang diberikan lebih murah (tetapi mempertimbangkan transport dsb, yah jatuh-jatuhnya jadi sama).
Sempat berpikir, dengan biaya yang dikeluarkan sama, di Jakarta saya hanya bisa berobat ke rumah sakit pemerintah, sedangkan di Penang (negara tetangga kita) saya sudah berobat di rumah sakit swasta.
Tidak mengherankan sekali jika banyak sekali orang menganjurkan mama untuk berobat kesana, salah satunya pertimbangan harga yang murah.

Next, soal Obat di Farmasi RSCM.
Kita diresepkan obat dan diminta untuk segera ditebus supaya bisa diminum oleh mama, salah satunya antibiotik.
Datanglah Calvin ke Farmasi RSCM, sesudah menunggu 30menit, tak ada satupun petugas yang melayani, heloooo...... mau bertanya pun tidak bisa, wong tak ada batang hidungnya.
Akhirnya Calvin pindah ke Farmasi RSCM Kencana, heyyyy within 15 minute semua obat sudah di tangan, dengan kemasan yang baik pula, walaupun harga obat totalnya cuman 11ribu.
So so so, tampaknya kalo nanti-nanti ada kebutuhan farmasi, mungkin lebih baik lgsg ke RSCM Kencana.

Oiya, mama terdaftar di RSCM Kencana, tetapi kami dapat memilih untuk dilakukan tindakan di RSCM Kencana atau RSCM Pusat, termasuk untuk dirawat inap di mana. Karena RSCM Kencana hanya menyediakan kamar VIP.

Anyway, sekilas soal pemasangan Celsite dan sedikit review terhadap RSCM.

Update: Esok harinya, pagi-pagi kami ditelpon dari pihak RSCM ditanya bagaimana kondisi mama. Another service yang dirasa sangat membantu.

Food for Mom

My mom just point out that she want to do the chemo.
About the pro and cons of chemo, yes we did know it. I will share it someday, why.

Actually from my mom going home, I have been keeping my mom eat the healthy food.
After browsing so much website, counseling with the doctor, and other cancer survivor, my mom came into conclusion that she want to change her eating lifestyle.

No meat, no egg, milk, totally vegan.
Eat raw food, vegetable and fruit.
Eat legumes.

Need time to adjust what will be the most convenience way to prepare it and during the chemo that will be more challenging as many website discuss that my mom will lost her appetite.

So far I has offer to my mom:
for protein - the soy bean milk everyday + legumes.
for vegetable - a lot of nice vegetable juice waiting for her.
for carbo - steam of Taro, Pumpkin, Squash, Potato.
for Fruit - many fruit that could still be eaten, priority: papaya!

But if and if she feel has no energy with all above food, then I said to her that I will gave her chicken stock, white egg, to boost the energy also.
What the most important thing during chemo is our body could took a lot of nutrition for regenerate the good cell.

As God has lead our life till now, He will lead us till the end.