What Cancer Cannot Do

I got these encouraging words when I had my first chemos in Ochser, Jefferson, Louisiana. The copies were on the sign in desk in the chemo section free for anyone who came there. They are so inspiring I wanna share with you here.


W H A T   C A N C E R    C A N N O T    D O

It cannot cripple Love

It cannot shatter Hope

It cannot corrode Faith

It cannot destroy Peace

It cannot kill Friendship

It cannot suppress Memories

It cannot silence Courage

It cannot invade the Soul

It cannot steal Eternal Life

It cannot conquer the Spirit


- Author Unknown - 

Dear Mika and Alisha

Dear Mika and Alisha, buah hati mommy,

How are you my babies? I do hope both of you grow into healthy, happy, kind, fine and amazing adults. And most of all I always pray you become sholeh /sholehah and rahmatan lil alamin. Aamiin Ya Rabbal Alamin.

By the time you are reading this, I might or might not still be around anymore. My cancer relapses. It metastases to my bones. There are 7 spots suspected, cervical IV, right scapula, sternum, prosesus spinosus lumbal II, lumbal V, sacrum and right femur. Now I'm having my second chemotherapy cocktails. This time it is a mix of capecitabine and carboplatin. The first chemo back in 2013 was a package of taxol and FAC. What strage names aren’t they? If one if not both of you become oncologist(s) if not scientist(s) in charge of finding the cancer cure (well, that’s another prayer I’m reciting for you ;)), those names will be as familiar to you as ABCs ;).

It was January 2015 when we discovered the disease came back. Mas Mika was 5 year and 3 month old while Adek Alisha was 2 year and 7 month old. Both of you were just too little to understand, so mommy and daddy kept you unaware of the situation. We didn’t want to confuse/scare you with something beyond your beautiful world. We want to keep you growing happy and healthy in the closest normal surrounding possible.

I’m writing this letter to say hello to you, to apology, to let you know how much I love you, my dear Mika and Alisha.

If you vaguely remember that I always seem to refuse to carry you during our life in Balikpapan, that’s not because I don’t want to. Like all of loving parents in the world, I always want to hold you closely so your hearts meet mine. So your hearts’ beatings and mine sing together in harmony. And carrying you is surely one of my favorite activities accordingly.

However, the axillary nodes dissection and mastectomy left my left arm vulnerable to lymphedema. I was cheating here and there though because I couldn’t resist the temptation. Mas Mika and Adek Alisha, you were so very cute little kids back then. But when the cancer recurs and grows in my bones, my right arm is so weak it hurts me even when I’m trying to raise my hand. My backbones are not that strong either. The cancer cells are eating my bones there. That’s why I can’t carry you anymore.

But don’t worry kids, your mommy is a warrior and your daddy is my hero. We are fighting the disease relentlessly and so bravely. I am not afraid of what is going to happen with me, with our family. And daddy is very much on the same board with mommy. Alhamdulillah Allah SWT gives us a strong iman, faith that makes us believe that everybody and everything will be taken care of, that at the end everybody will be just fine.

Sending you love as many as the stars in the sky.

Pasir Ridge, February 16, 2015

Mommy

Habis Gelap Terbitlah Terang

There’s been a lot going on in our life recently. To update with the February posting, Alhamdulillah the result of the biopsy was negative. It’s just a benign calcification. That’s really a blessing. I felt like I was the luckiest person in the world.

We went on with our plan. We moved back to our home country, Indonesia. To a small city called Balikpapan. We live in company housing so the accommodation is excellent. Several days after we arrived, we were reunited with our daughter. I couldn’t describe how I felt. It just felt surreal, like a dream.

However, things weren’t like a Hollywood movie where everything just stops at the happily ever after scene. Life goes loooonggg beyond that point. For us, here comes the adaptation time.

It’s the adaptation with the time zone, with the weather, with the surroundings and most of all with our little daughter. It was a hard time both physically and emotionally. A mind in a body with prolonged sleep deprivation would not tolerate chaos really well. The mind would just go wrong. That’s what I felt at least. I was extremely exhausted from so many days of sleeping only 3-4 hours each day. I could have slept well but as a mom with a little kid experiencing a jetlag, you know how impossible it is. Feeling sleepy all of the time, I had to manage the house and stop the kids from fighting every second. Managing the house was easy breezy, but managing the kids was a headache. I didn’t know why my kids just couldn’t get along well. Why they were fighting, screaming, crying every second. I felt like my head was just going to explode.

And that’s not all. My kids were getting sick. First, my daughter was having a mouth sore followed by a mild fever. She was crying all day all night for 2 days. We took her to the doctor and she got better. Next, my son was having a very high fever he was shivering. Something that never happened before. My husband and I were panicked and took him to the emergency room in a nearby hospital, twice. Once in the middle of the night and once the following day. He was better after couple of days. After that, our bathrooms ceiling were collapsed during a very heavy rain.  It was so bad the repair would take 2 weeks time and we had to move to a temporary housing. Moving in and out and in and out and in, packing and unpacking, and packing and unpacking and packing and unpacking. Gosh, I felt like I was about to collapse as well.

And there I was. Having a bad cough and runny nose for a week, I started to felt a pain in my right forehead. A pain that brought tears in your eyes without you need to cry. Another thing that never happened before. I went to the doctor, got an MRI and was even told to have a biopsy in my sinus considering my medical history. Oh my goodness gracious….

However, besides all of the terrible things we were lucky we had a very solid support system. Our big family was helping during our early arrival. They stayed several weeks helping us with the adaptation. Our big thanks to our beloved family! A maid, driver and baby sitter were also easily available for us.  So, little by little everything went into places. The kids even though are not always playing together nicely they fight a lot less.  Our sleep even though is not a straight uninterrupted 8 hour long is so much better. We started enjoying our new life here. Appreciating the beautiful landscape, the friendly and safe neighborhood, the fresh air and healthy atmosphere. So every time I wake up from my nap with the kids, I’m always grateful for the greeneries and blue sky I see over my windows, for the life I’m living right now. If you just hang in there and keep believing, there’s always a light at the end of a tunnel.

Life is Happening Right NOW

For so many times we wait for special moments to enjoy our best things. We wear the best clothes only for date night outs, holiday celebrations, family gatherings, wedding receptions. We use our best china for very special dinners, carry the most expensive purses for strictly limited occasions, decorate the home only when guests are coming. For most of the times, the best things are just sitting there, idle, unutilised, in waiting.

The worse is we also wait to show our best self. We wait for Ramadhan to give zakat, wait for Ied Fitri to ask for forgiveness, mind our manners only when there are people we want to impress. We wait for birthdays to say how special someone is, to give presents, to treat people. We wait and wait and wait.

I was happy, positive and having great expectation in my future when the radiologist told me the mammogram of my remaining breast was suspicious and I needed to get a stereotactic biopsy during my 3 month follow up visit after radiation. Tears dropped in my eyes, my heart was broken. I just didn't understand why. I have been doing my best to be healthy. I start exercising, eat healthy, cook carefully, sleep better, relax more. I have been doing everything in my control to stay away from cancer. I just didn't get it. I was upset, the plan my husband and I have designed for our future is in jeopardy. We don't know how to handle our life if the biopsy is positive. Just when we are ready to move on.

Later that day after hardly swallowing the news, my feeling began to calm down. My mind started recalling so many stories about other people who were also facing difficulty in life they didn't understand why that happened. A child who was diagnozed with terminal illness, a pregnant mother who was told that her baby was abnormal, a family whose one of its members was very very sick. Inspite of the bitterness I saw they were living their life gracefully, they were able to squezed the juice of whatever life they were facing. They were able to live their life inspiring others.

Tonight just after the biopsy this morning, with the preliminary result will only be available tomorrow afternoon, I start putting my hope together again. I will not let the biopsy result shatter my great expectation of what lies ahead for me. I don't want to wait for anything to get the best of my life. Whatever it is, it is the life God has given me. Let it be my present that I enjoy now.

A Flashback that will Bring Me to the Future

I was breastfeeding my 6 month old baby when I was diagnosed with breast cancer. I was thirty six years old. My eldest son was just 3 year and 2 month old and my marriage was not even 5 years long.

Yet, I wasn't too shocked when the doctor told me the result of the biopsy. Somehow I knew something was not right when we (my husband and I) discovered the big mass in my left breast. I did cry but not much. I knew I was strong enough to handle this.

On the next doctor visit, I told the doctor about a lump in my armpit so he ordered another biopsy on that site. I knew something else was going to come out. And yup the cancer had spread to the lymph node. After  many more exhausting tests they said it was a stage 3C and the treatments would include 16 rounds of chemotherapy, mastectomy with axillary nodes dissection and 6 weeks of radiation.

The first thing my husband and I thought was how we would manage our life when I was going through the treatment. We're both more of practical persons, not really the emotional ones. Off course we were sad but we had a baby and a toddler to take care of so we're like let's work things out. Hence, the first thing in our mind was how should we do this? Who would take care of the children? All of our families were in Indonesia. We moved to the USA only less than 3 years ago. We didn't have lots of friends here. Asking them to temporarily take care of a toddler was sensible but a 6 month old baby? We knew that would be too much.

So we came to a decision that we had to send our baby back to Indonesia so our parents could take care of her. That's when my heart was broken. I was devastated. She was so little, so pure, so beautiful, why should she have to be separated from us, her parents? Why she couldn't be raised the same way her brother was? Why I couldn't kiss her chubby cheeks, smell her fragrant silky skin, hold and cuddle her anymore? The tears only stopped when our rationality took over the emotion. We believed she would be better off being under our parents' constant and stabil care than staying with us with uncertain condition.

From then on I was strong. The chemotherapy and everything that went with that was alright. Loosing my hair, eyebrows, eyelashes, having dark nails, nausea, vomitting, were ok. I was ready. The surgery went well. Loosing one of my breast, a whole bunch of lymp nodes, never really bothered me. The radiation was done and I was lucky my skin, eventhough became darker, was not painful. No blister whatsoever. I knew I was strong. I could take whatever it was to regain my health.

However yesterday when I read an article about living with cancer in the perspective of a boy whose father passed away because of cancer when he was just 11 year old, I was saddened. My heart sank. I never knew how children's life would be affected after seeing their parent dying in front of their own eyes. I never thought that it would be a terribly horribly frigthening endless nightmare. How scared they would be. How their once beautiful world would turn upside down. How painful it would be that it would leave a scar in their heart forever. I was saddened. I don't want my kids to experience that. I want them to feel secured, safe and happy. I want to watch them grow, be by their sides, share their dreams, be their rock. This time I know more than ever that I need to STAY STRONG.

I want to change!

Senang rasanya bisa kembali menjalani kehidupan normal. Mengantar jemput anak ke sekolah, belanja keperluan sehari-hari, mencuci piring, membersihkan rumah, melipat baju, menyiapkan makanan untuk keluarga. Alhamdulillah sudah bisa saya lakukan lagi. Setelah hampir satu tahun akhirnya saya bisa merasakan nikmatnya hidup tanpa doctor appointment, chemoteraphy, dsb dst. Dua hal yang masih tersisa tinggal jadwal physiotherapist dan satu pil Tamoxifen setiap hari.

Pergi ke rehabilitation center ternyata juga membuka mata saya. Di sana saya bertemu physiotherapist saya, Kelly namanya. Di salah satu pertemuan, ia bercerita kalau neneknya sudah berusia 97 tahun. SEMBILAN PULUH TUJUH TAHUN dan SEHAT. Neneknya masih bisa mandi sendiri, pergi shopping dan pergi ke kasino setiap hari dari jam 10 pagi hingga 3 sore. Ha3.. Jangan khawatir, saya tidak akan membahas bagian tentang pergi ke kasino dan membuang-buang uang di sana.

Di kota saya tinggal, saya memang sering sekali melihat orang-orang tua dimana-mana. Dari penampilannya saya duga mereka berusia antara akhir 70an hingga 80an. Rambut putih, badan sedikit bungkuk, berkaca mata dan gerakan tubuh yang melambat. Banyak di antara mereka hidup sendirian atau dengan pasangannya yang juga sama-sama sepuhnya. Beberapa di antara mereka bahkan masih memiliki teman-teman seumuran dimana mereka masih rutin bertemu seminggu sekali. Mereka masih bisa memakai make up, baju terbaik dan menunggu temannya menjemput untuk bersama-sama pergi ke restauran sekedar untuk menghabiskan waktu luang, nostalgia dan tertawa bersama. Mereka juga masih aktif pergi ke fitness center. Di tempat yang saya datangi, ada kelas-kelas untuk orang-orang tua tersebut. Saya seringkali melihat kelas aquatic fitness yang penuh dengan para nenek kakek tersebut. Juga kelas dancing to the oldies, mereka semangat berolahraga bersama.

Betapa saya ingiiiiinnn bisa seperti mereka, sehat wal'afiat dan panjang umur. Didorong rasa ingin tahu, saya tanya ke Kelly apa kebiasaan neneknya hingga ia masih sehat di usianya yang sangat lanjut. Katanya, sejak muda neneknya banyak melakukan kegiatan fisik dan rajin berjalan kaki. Ia juga tidak merokok dan minum alkohol. Ia memasak sendiri makanannya dan rajin minum teh atau kopi.  Sederhana ternyata. Masih penasaran, saya tanyakan tentang jenis makanannya, Kelly berkata kalau mereka jaraaaangg sekali makan daging merah. Kalau hari ini ia makan burger, baru 1-2 bulan lagi ia makan burger. Demikian pula goreng-gorengan (deep fried food). Gorengan dianggap sebagai treat yang hanya bisa dimakan sekali-sekali saja. Yang sering adalah ikan dan ayam. Cara memasaknya pun hanya di oven, steam, atau grill. Oia satu lagi, banyak sayur dan buah.

Sekali lagi, itu bukan pengetahuan baru bagi saya. Informasi seperti itu sudah sering saya baca dari buku atau internet namun yang membuat saya terpana adalah bertemu dan mendengar langsung kisah nyata dari orang yang mempraktekkan gaya hidup tersebut. Selama ini saya pikir di sini manusia umurnya lebih panjang karena simply mereka hidup di negara maju yang semuanya lebih baik. Saya mengira, mereka beruntung saja hidup di negara maju sehingga usia harapan hidupnya bisa lebih panjang. Tapi sekarang saya sadar bahwa, mereka pun ikut berkontribusi terhadap kesehatannya sendiri. Dari makanan yang mereka masukkan ke tubuh mereka dan dari aktivitas fisik yang mereka lakukan untuk mempertahankan kebugaran tubuhnya.

Iseng saya melihat ke belakang tentang cara hidup saya. Bertahun-tahun saya hanya duduk pasif di dalam ruangan, di belakang bangku sekolah, di belakang meja kerja. Saya tidak pernah suka mata pelajaran olahraga jadi fitness center/gym bukan tempat favorit saya. Bertahun-tahun saya mengabuse tubuh saya dengan konsumsi ayam goreng, udang goreng, paru goreng, tempe-tahu goreng, pisang goreng, empal goreng, pastel goreng, risoles goreng, bakwan goreng, baso tahu goreng, ikan goreng dan jutaan jenis gorengan lainnya. Hmm...tidak heran saya terkena kanker di usia 36 tahun :P... Kalaupun saya tidak kena kanker saat ini, mungkin saya akan terkena penyakit kolesterol, jantung, darah tinggi, asam urat, liver, batu empedu, dsb dst penyakit dalam lainnya di usia 40/50/60, sangat jauuuuhhh dari 97.

So, dengan semangat perubahan, saya langkahkan kaki ke fitness center setiap hari dan saya jauhi goreng-gorengan jahanam itu ha3...,

Don't expect to get different result if you keep doing the same thing, the same way. :P

The Americans

Saya tidak pernah membayangkan akan tinggal di USA selama lebih dari 3 tahun. Saat saya sedang kuliah di London, saat tengah jatuh hati terhadap segala yang berbau Eropa, saya sempat berkata pada diri sendiri bahwa negara terakhir yang ingin saya kunjungi adalah USA. Saat itu saya tidak melihat ada hal menarik untuk dilihat di USA.

Namun seperti orang tua bilang, jangan terlalu berlebihan apabila kamu tidak menyukai sesuatu karena biasanya hal itu justru akan datang kepadamu. Dan benarlah, 2 tahun setelah menikah, kami pindah ke USA menyusul penugasan dari kantor suami saya.

Selama tinggal di sini, lama kelamaan kami mulai melihat hal yang selama ini tertutupi dari pandangan kami. Saya dan suami sering sekali berbincang dan membahas hal-hal yang menarik perhatian kami. Salah satu dan yang paling sering muncul dalam pembicaraan kami adalah apa yang membuat negara ini menjadi super power di dunia.

Sering kita baca di media massa, USA memang maju namun selalu menghadapi berbagai permasalahannya sendiri. Dari sisi perekonomian, tidak henti-hentinya China dikatakan sebagai kekuatan baru yang mengancam dominasi negara-negara Barat (USA dan Eropa secara umum). Dari sisi akademis, anak-anak di kota besar Asia Timur (Shanghai, Singapore, Seoul, dst) diberitakan lebih unggul dari anak-anak di USA dalam bidang ilmu pasti dan pengetahuan alam. Belum dari banyaknya bencana alam di sini, dari yang tidak pernah saya lihat di Indonesia seperti tornado dan hurricane, sampai yang umum terjadi di nusantara seperti gempa, banjir dan wildfire.

Sampai suatu saat kami menonton film seri yang berjudul "America: The Story of Us". Film ini menceritakan sejarah USA dari mulai awal berdatangannya imigran-imigran dari Eropa, terbentuknya negara USA, Civil War, Great Deppression, hingga era teknologi informasi saat ini. Dari sana, saya dan suami menyimpulkan terdapat hal-hal khususnya dari sisi karakter yang membuat negara ini begitu kuatnya.

Pertama, dari awal terbentuknya negara ini imigran-imigran yang berhasil sampai di benua ini adalah orang-orang yang berjiwa sangat kuat, yang berani meninggalkan negaranya, berlayar menyebrangi samudra luas untuk sampai di wilayah yang sama sekali tidak terbayangkan. Keberanian, kekuatan tekad, dan kepercayaan akan adanya harapan akan kehidupan yang lebih baik, membawa mereka sampai dan bertahan bahkan berkembang di benua ini.

Kedua, agresivitas. Dalam menaklukan benua baru, tidak dapat dipungkiri bahwa agresivitas ada dalam darah mereka. Penduduk dan pemilik asli benua ini yaitu suku Indian dibuat berada dalam kendali. Kekuasaan atas tanah dan semua yang berada di atas dan di dalamnya mereka ambil alih. Melihat bagaimana negara-negara Eropa   menguasai berbagai negara lain di dunia silih berganti sejak jaman Yunani, Romawi hingga masa-masa imperialisme, tidak heran jika imigran-imigran Eropa ini juga memiliki dorongan kuat untuk menaklukan bangsa lain yaitu penduduk asli Amerika.

Selanjutnya, kami juga melihat adanya resilience yaitu kemampuan untuk terus bangkit setiap saat terjadi musibah/ bencana. Benua ini bukan benua yang relatif aman dan tenang seperti Eropa. Seperti telah saya sebutkan sebelumnya, berbagai bencana alam terjadi di sini. Selama kami tinggal di sini, kami menyaksikan sendiri (meskipun hanya lewat TV) bagaimana masyarakat USA tidak pernah patah semangat membangun kembali rumah, sekolah, kantor, toko, kota, kehidupan mereka setelah bencana datang menghancurkan semuanya. Berkali-kali setiap saat sehabis bencana, media massa melaporkan bagaimana kerusakan yang terjadi dan selalu disertai komentar para korban yang menyatakan bahwa mereka akan membangun kembali apa yang sebelumnya mereka miliki.

Alam yang tidak terlalu ramah, disikapi sebagai tantangan oleh mereka. Bukannya lari menghindar, mereka memutar otak dan mencari cara bagaimana mengatasinya. Ilmu pengetahuan berkembang hingga kondisi cuaca dan perubahannya selalu dapat dipantau dan diprediksi hingga sebelum hurricane datang, penduduk dapat diinformasikan langkah apa yang harus disiapkan. Untuk yang belum bisa diprediksi dengan lebih tepat, diciptakan bangunan-bangunan yang lebih tahan gempa dan bungker untuk berlindung dari tornado. Kreativitas dan inovasi menjadi bagian dari kehidupan sehingga ilmu dan teknologi mereka selalu menjadi yang terdepan mulai dari ilmu dan teknologi luar angkasa, alat dan obat-obatan untuk kanker hingga barang yang kita nikmati sehari-hari seperti film dan tablet komputer.

Semangat kolektivitas/kebersamaan. Meskipun sering saya dengar bahwa orang Barat lebih individualis dibanding orang timur, pada kenyataannya hal tersebut tidak saya temui di sini. Orang Amerika sangat senang menjadi sukarelawan, banyak sekali saya temui kegiatan-kegiatan dimana orang-orang yang bekerja adalah sukarelawan. Menjaga perpustakaan, menjaga anak-anak sekolah yang sedang piknik, membersihkan jalan, memberikan konseling pada pasien baru di rumah sakit, hingga membangun rumah untuk orang yang tidak mampu dilakukan oleh tenaga sukarelawan. Hal ini tampaknya didorong oleh semangat untuk memberi kepada komunitasnya. Apalagi jika terjadi suatu bencana atau kecelakaan yang menimpa orang banyak, masyarakat sangat antusias untuk datang membantu. Pengumpulan dana untuk korban dengan cepat mencapai angka-angka fantastis.

Terakhir, insecurity atau perasaan selalu dalam kondisi yang tidak aman. Sering kita dengar bahwa kita perlu ke luar dari comfort zone kita untuk menjadi lebih maju. Ini tidak hanya berlaku untuk perorangan tapi juga organisasi dan negara. Pada level perorangan, sistem tenaga kerja di sini yang membuat perusahaan dapat dengan mudah memberhentikan pegawai, membuat para pegawainya selalu berusaha bekerja dengan baik agar tidak dipecat. Pada level masyarakat, self critics adalah hal yang biasa. Berbagai sistem dan kondisi masyarakat seringkali dikritik dan dianggap kuranga baik. Pada level negara, menurut saya, negara ini selalu mempunyai "musuh". Setelah Perang Dunia, muncul Perang Dingin, lalu sekarang Perang melawan Terorisme. Perang-perang ini pada intinya membuat mereka merasa terancam sehingga tidak tertidur dan tenggelam. Dengan merasa ada ancaman, mereka selalu berpikir dan berusaha untuk menjadi yang paling baik sehingga tidak heran jika saat ini kita menyaksikan negara ini menjadi satu-satunya negara super power di dunia.