Showing posts with label kemoterapi. Show all posts
Showing posts with label kemoterapi. Show all posts

#WeTalkAboutCancer: Chemotherapy and its impacts


Disclaimer: this is a repost of my previous note on World Cancer Day 



IT'S THE WORLD CANCER DAY!
Every 4th of February, we salute those surviving cancers, cheer those fighting it and light the memories of those who have lost their lives to cancer.
Last year, we had a special event for World Cancer Day 2016 at the United Nations
But this year, I haven't seen one at the UN.

I have come across more infographic about cancer from worldcancerday.com.
From the top 5 most frequent cancers, breast cancer stays at no. 2 after lung cancer.




 Moreover, with the trend we have now, it's likely that cancer will continue to increase :(



That's why,  in so many ways, more and more of us are touched by cancer.
Be it your dearest family members, colleagues, neighbors, or even yourself.
And your life-changing journey begins.

One of the toughest part is your road to recovery from cancer is perhaps chemotherapy.
Many of us are already disheartened when we hear this word.
Tons of questions were asked and many, most of the time, are not satisfyingly answered because this process brings different impacts to each patient.

So, what do you have in mind when you hear about chemo? 
What are the impact? How long do we have to do it? Will I be strong enough to endure it? Will I lose my hair? How can we cope from it? 
Those are some of the common questions we hear about chemo.
So, in this edition of #WeTalkAboutCancer with Yervi Hesna, we'll talk about chemotherapy.

And here's my story...

Done with Chemoteraphy?

I am :)...

Alhamdulillaaah...

It's been quite a while for me but I guess it's good to share more about chemotherapy and its impacts. I am fully aware that chemo is probably the hardest part that we have to go through while battling breast cancer. And every patient might have different regime as well. 
I happened to have doxorubicin and cyclophosphamide or famously known as AC for 4 cycle every 3 weeks, followed by Taxol and Herceptin every 2 weeks for 12 times.

It was tough indeed..
But all in all, I managed to go through it with huge helps from everyone around me.
This post is one of my personal records about the treatment, particularly the impact that I felt and am still feeling till now from the chemo.
Hope it helps..






Saya sempat cerita di posting sebelumnya kalau kemoterapi yang saya jalani memang seru :). Syukurnya satu per satu semua prosedur tersebut sudah terlewat dan sekarang saya baru selesai menjalani proses rekonstruksi payudara dan akan dilanjutkan dengan radiasi. Ceritanya menyusul yaaaa :).


Satu yang belum saya share secara details di postingan sebelumnya. 

Apa saja sih dampak kemoterapi?

For sure, the impacts of chemo are enormous. Judging from my own experience, some of those impacts even stay up until now, although I have finished my chemo months ago.

Dampak dari kemoterapi memang banyak. 
You wanna know some of them? At least, these are what I myself have experienced during my treatment..

1. Hair
It can be thinning, partial or total hair lost. And we talk about hair, that means all the hair in our body, including eyebrows and eye lashes. It's temporary, once the chemo is done, it will grow back. 
Setelah kemo AC kedua, rambut saya mulai rontok. Banyak banget..sekali rontok bisa satu genggam. Akhirnya, saya pun memutuskan untuk mencukur habis rambut saya :). Daripada saya stress melihat rambut rontok ngg kira-kira, akhirnya suami pun mencukur habis rambutnya dan rambut saya di minggu kelima setelah kemo pertama saya mulai. Jadi judulnya kompakan, kompakan botak :). 




Bagi banyak penderita kanker, kehilangan rambut mungkin salah satu dampak yang efeknya sangat besar. Walaupun secara physical tidak sakit, namun secara psikologis banyak yang merasa malu, stress dan tidak nyaman saat harus kehilangan banyak atau semua rambutnya. 

My (not-so-new) hairstyle...
Frankly speaking, dokter saya berkali-kali bilang supaya saya siap dengan dampak kemo yang satu ini. Well, sesiap-siapnya kita, memang tidak gampang ketika kita harus kehilangan rambut. Apalagi buat perempuan, rambut kan bukan hanya sekedar rambut, tapi juga mahkota. Alhamdulillah, saya diberi kekuatan dan kepercayaan diri untuk berkepala botak. And I guess, it suits me fine :)


Setelah selesai dengan AC, taxol juga membuat rambut lain di badan saya pun habis berguguran. Termasuk alis dan bulu mata :). Sereeem lho ternyata kalau ngga punya alis..You look weird :). 


Tanpa alis...agak-agak gimanaa gituuu :)

Untungnya saya ikutan program Look Good Feel Better yang memang khusus diadakan bagi perempuan yang mengalami dampak berat dari kemoterapi. Seperti yang ceritakan di postingan tentang program keren ini, saya diajari dandan dan diberi satu set make-up keren-keren gratis. 
Alhamdulillaaah...memang rezeki :)

2. Intestine

Bad things like ulcers, nausea, vomiting and constipation fall under this category. 
Well, I have to say it's one of the toughest! Imagine yourself throwing up after eating or drinking anything :(. 

Bayangin aja ngg bisa makan dan minum karena bawaannya muntah meluluuu :(. Waktu hamil aja ngga gini-gini amat hehehe. Dan karena saya harus menghindari dehidrasi, mau ngga mau saya paksakan minum yang banyak. Saat kemo, air yang banyak masuk adalah jus jeruk dan air kelapa. Air putih pun perlu perjuangan, padahal di saat normal saya pecinta air putih berat. Well, untungnya ini hanya untuk 4 hari pertama setelah kemo. Dan semakin sering kita menjalani kemo, semakin banyak racun yang menumpuk di badan. Akibatnya, badan pun makin kewalahan mengatasinya. Tapi syukurnya, obat anti muntah dan mual pun makin canggih. Asal saya rutin mengkonsumsinya, efek yang satu ini bisa dikurangi.

3. Skin and nail changes
Some of the impacts include darkening and/or peeling of the skin, nail changes, particularly the color, rashes and flushing. 

Kulit saya jadi super kering dan kuku pun mengalami perubahan warna. jadi menghitam, terutama di kaki. Yang parahnya, kuku jempol kaki saya suka berdarah and I don't even feel it! Yang ada darah sudah kemana-mana dan saya baru panik setelah dikasih tau Udi atau Bo :). Well, sebenarnya sepanjang kita aware dan langsun dibersihkan tidak masalah. Things will get worse when we got the infection, so make sure you watch out..

it might look gross but this is what happen to me toe :(

4. Fatigue

Setelah kemo, saya selalu merasa capek. Capek bangeeet malah. Memang  badan rasanya ngga jelas tapi yang pasti saya gampang letih. Jalan sebentar capek, naik tanggal sedikit capek...padahal sebelumnya saya tukang jalan :). 

Gradually, I try to build up my strength again. Well, fatigue is pretty common for those experiencing chemotherapy, so I have to say I'm pretty ready with this one as well. Again my doctor told me that I have to get easy with things during chemo and for me who is so used to move around, it needs some adjustments "_". 


5. Heart

Changes in heart beat, heart failure or damage afterbeing treated with chemotherapy drugs for a long time are listed. Sounds so scarrying, right. But I make sure that my heart is constantly checked. Right now, I have ecocardiac test every 3 months.

Mudah-mudahan dampak kemo yang berkaitan dengan jantung bisa maksimal. Untungnya di sini saya juga wajib memeriksa kondisi jantung saya melalau test ecocardio setiap 3 bulan sekali

6. Infertility

This is another hard blow for me. 
Chemoteraphy has stopped my menstrual cycle.  
Yuuup... no more period. at least during the chemo, that's what my oncologist said. 
Since my 2nd round of AC, my period gradually stopped. Until now :). 
Even before, my oncologist  has specifically asked me and my husband whether we have the intention to have another child. Because if we do, I have to freeze my eggs before starting the chemotherapy. For sure, getting pregnant during the pregnancy is a big no because chemotherapy is fatal for the fetus. And since chemo causes infertility,  starting with no menstruation, I have to get myself ready with pre-menopause symptoms like hot flushes, dry skin, and pain during sexual intercourse. Well, it's a lot to bear but here I am :).

Dampak lain dari kemo adalah infertilitas alias mandul. Iya, mandul.
Sebelum saya memulai kemo, onkologist saya memang sudah beryanya secara spesifik apakah saya san suami masih berniat akan menambah anak lagi. Karena kalau iya, maka saya harus membekukan sel telur saya sebelum kemo dimulai. Well, kemo kan prinsipnya racun yang membunuh sel, makanya sangat berbahaya bagi pasien dan janin jika hamil saat kemo. Alhamdulillah, saya dan Udi telah diberi sepasang anak yang lucu-lucu, jadi kami pun memutuskan  untuk tidak membekukan  sel telur saya.  

Selain itu, kemo juga membuat saya tidak lagi mengalami menstruasi. Sejak kemo AC yang kedua, menstruasi  saya berhenti berangsur-angsur hingga sekarang. Bahkan setelah kemo selesai pun, saya masih belum mengalami menstruasi.

Again, onkologist saya bilang bahwa saya akan mengalami gejala-gejala pre-menopause. Salah satunya adalah menstruasi  yang terhenti. Well, untuk beberapa orang dampak ini ada yang bersifat sementara, ada pula yang bersifat lebih permanen.

7. Nervous System change

Tingling in fingers, toes, arms or legs, or jaw pain, muscle weakness, irritability, depression and confusion are listed as impacts of chemo on our nervous system. That's a lot, right. But the good thing is it's not always happening to one person at the same time. But this has been identified from various patients undergoing chemo.

In my case, I do have this tingling sensation in my fingers and toes. It builds up since I started Taxol and the more Taxol I have in my system, the stronger the numbness and tingling sensation I feel. Even now, after almost 2 months since my last chemo, I still feel it. My oncologist suggested me to take folic acis, vitamin B6 and Lyrica, one of the medicine targetting nerves. Well, i sincerely hope it will go away after some times. It is quite irritating that the numbness make walking, buttoning my shirts or opening jars, some of the simpel task we do everyday, chalenging. 

Dampak lain yang saya rasakan dari kemo adalah kesemutan. 
Iya, kesemutan. Tapi bukan sembarang kesemutan yang tidak lama hilang. Ini kesemutan yang agak 'permanen'. Sejak saya diberi Taxol, kesemutan di ujung jari-jari tangan dan kaki mulai terasa dan makin lama makin keras. Onkologist saya menyarankan saya untuk mengkonsumsi asam folik, vitamin B6 dan salah satu obat saraf yang dinamakan Lyrica di sini. Memang sepintas terdengar sepele, tapi kesemutan ini membuat saya merasa terganggu saat berjalan, memasang kancing baju, atau membuka tutup botol misalnya. Mudah-mudahan, seiring dengan berkurangnya dampak Taxol di dalam tubuh saya, kesemutan ini pun bisa hilang :).

8. Veins

For sure, hardening of the veins in and around area of intravenous (IV) injection will happen. with high intensity if infusion that I have to do, it will take the tolls on those veins. Moreover, in worse cases, ulcer formation, tissue damage, or discomfort in and around the area of the IV injection may occur as well.

 Karena seringnya saya diinfus selama menjalani kemo, area di sekitar pembuluh darah yang digunakan juga terkena dampaknya. Lebam membiru atau agak terasa nyeri karena infus yang lumayan lama. Untungnya, suster yang menangani saya lumayan canggih dan jarun infus yang digunakan pun cukup halus, sehingga saya tidak terlaly merasakan sakit. tapi setelah 16 kali dikemo di tempat yang itu-itu juga, mau tidak mau pembuluh darah saya pun terasa tidak nyaman.

Well, frankly, I still have a looooong list of impacts of chemotherapy here, including in our eyes, ears, mouth and lungs. I also feel some joint and bone pain. My oncologist also briefly mentioned that the chemo drugs might hit the bone marrow causing low red blood cell counts which will make us feel tired, low white blood cell counts which make us vulnarable to infection and low platelets which make us easily bleed. Again, all these impacts are unique from one another. One might feel it, while others might not. 

But in my case,  in short, all these chemo makes me  feel like I'm getting older, muuuuch older, before the time.



my big smile after a few rounds of Taxol and Herceptin :)

So, those are some of the effects that I have experienced during my 4-round of AC and  during the 12-round of Herceptin and Taxol. As I said earlier, the tingling sensation on my fingers and toes, no period and low level of energy are still lingering till now..

But again, I am still in high spirit to continue my procedures. Next, I will share my breast reconstruction procedures and radiation, that I just started yesterday :). So, I guess I will have to be back with more details :).


cheers...stay positive!

References:


NYU Hospital Center on Chemotherapy, 2014Chemotheraphy and You, National Cancer Institute, 2011


Stay tune for more on #WeTalkAboutCancer #breastcancerawareness



Chemotherapy and I...

February 12, 2015 was my last chemo...

Yaaaaay....

That was more than a month a go :)

What a journey!

Sebenernya udah lamaaa banget draft ini saya susun, sejak kemo masih awal dijalani. Tapi entah kenapa, baru selesai sekarang :). Well, lebih baik terlambat daripada tidak dishare sama sekali kaaaan...

After 4 rounds of AC and 12 rounds of Herceptin and Taxol, I can finally close one chapter of my #roadmaptowellness :). Many more to come but at least the hardest parts were done. Done...

Alhamdulillaaaaah...

Ngga kerasa lumayan lama juga saya menjalani pengobatan kemoterapi. 
Sejak pertama kali dimulai bulan Oktober 2014, 2 bulan setelah saya menjalani mastektomi, rasanya waktu berjalan cepat. 
Yah, cepat dalam arti satu demi satu prosedur pengobatan yang harus saya jalani selesai sesuai jadwal. Tidak ada yang mundur dari jadwal yang disusun sejak awal bersama onkologist saya :).
Benar-benar anugerah luar biasa dari Yang Kuasa.

Kemoterapi. ..
Apa yang ada di benar teman-teman saat mendengar kata ini?
Rambut rontok, kepala botak, badan tidak enak? 
Well, suka tidak suka, semuanya benar adanya...Paling tidak, inilah yang harus saya jalani selama 5 bulan terakhir...



Cheers....

Buat kami yang dideteksi terkena kanker, bisa jadi kemoterapi  adalah 'paket hemat' yang harus dijalani bersama dengan prosedur lainnya. Yah, walaupun tidak bisa dibilang hemat juga ya. Karena dari pengalaman tante saya, yang baru-baru ini terdeteksi kanker payudara juga, pengobatan kemoterapi di Indonesia sangat mahal :(. Saya beruntung karena masa pengobatan saya jalani di AS dan hampir semuanya ditanggung oleh asuransi, walaupun masih ada out-of-pocket expenses yang harus saya bayar dan jumlahnya tidak sedikit.

What is chemotherapy? 
Taken from my pocketbook provided by the NYU Clinical  Cancer Center, chemotherapy  is "a type of cancer treatment that uses drugs to destroy cancer cells." Drugs that will somehow stop or slow the growth of cancer cells.  The problem is it's not only destroying the cancer cells, but also some healthy cells. You know, cancer cells divide and grow very quickly and that's what the drugs are targeting. But, some healthy cells divide and grow quickly as well, so the drugs will hit them, too. At this point, the chemo drugs still can not distinguish them, because they only notice it from the speed of their growth. Well, that's why chemo has side effects and some of them are quite damaging.

Hal ini yang membuat kemo sangat terasa karena memang pada prinsipnya kemo adalah obat yang bersifat 'racun yang digunakan untuk membunuh sel-sel kanker. Salah satu ciri-ciri sel kanker adalah perkembangannya yang cepat. Sel kanker memang membelah diri dengan cepat dan obat kemo menargetkan sel-sel yang berkembang dengan cepat untuk dibasmi. Sayangnya, sel sehat pun ada yang berkembang dengan cepat dan biasanya ada di sistem tubuh yang selalu sibuk dan tumbuh, seperti misalnya rambut, kuku, dan sistem pencernaan. Itu sebabnya kemonya biasanya selalu membuat mereka yang menjalaninya mual, muntah, kehilangan rambut dan mengalami perubahan warna kuku.  
The notorius AC...



I still remember my first round of chemo.
It was the AC one. Or commonly known as Adryamicyn  and Cyroxan.
The notorious AC :(.


It was October 9th, 2014. 
Sitting nervously in my oncologist ' s room, I was once again prepared for my first chemo. I was also briefed, one more time, about the possible side effects and complications.


Before that, and before every chemo I have to go through, I need to have my blood checked to make sure I'm healthy enough. They're looking at my blood count, hemoglobin and some other indicators from my blood. Once everything is satisfactory,  I can proceed with my chemo.






Then I was bravely walk up to the next floor. The Infusion room.
This is where the chemo starts.



my infusion room at NYU Clinical Cancer Center

I'm lucky to be handled by Nina Bells, one of a senior registered nurse who is so kind and gentle. She got my vein, chatted with me so I could relaxed and also  explained  what I was going to go through. It started with pre medication, including ones that will help me with horrible nausea and vomiting as well as other possible allergies. Then she injected that notorius AC, slowly to my vein. She needed to make sure that my body could handle it. Then the rest of my first chemo went  smoothly. 


My dearest Nina...
Until I arrived at home. 
I had been warned that I would feel nausea, vomit, lack of energy, and many more uncomfortable feelings. and they hit me. 
Hard.

I still can't describe exactly the feeling I have after I had my chemo. It was like a mixture of discomfort when you have horrible morning sickness, feverish body, and total loss of energy. No wonder I spent 3 days just sleeping, (trying to) drink enough water, taking my medicine and sleeping again.

Rasanya seperti campuran mual ngg enak karena hamil muda, badan meriang karena tifus dan lemes ngga karuan ngga ada tenaga. Itulah rasanya kemo buat saya. Sepintas memang seperti tidak ada yang salah, tapi badan benar-benar ngga enak rasanya. Makanya selesai kemo, paling tidak saya butuh 3 hari istirahat total...hanya tidur, minum obat, minum air putih dan juice sambil mencoba makan apapun yang masuk (biasanya keluar lagi :( ) dan tidur lagi.


one of my pills...helping me with the nausea...

Although I was given the premedication and some extra medication to fight all these. And they are darn expensive. Again..I was lucky I had my insurance covering them. But USD 80 per pill for anti-nausea is indeed expensive. 

Rasanya tambah seperti kena tonjok ketika tahu harga-harga obat-obatan yang dipakai untuk melawan dampak kemoterapi ini. Salah satu obat anti mual saya kalau dihitung harganya sebutir kira-kira USD 80 ...dikalikan Rp13.000,00 udah berapa tuh. Untungnya, sekali lagi alhamdulillah, sebagian besar obat-obatan ini dicover oleh asuransi saya di sini. Saya hanya perlu membayar co-pay USD 60 untuk 4 box yang berisi 8 butir obat mujarab ini. Bener-bener rezeki dari Allah SWT :)

So, that's my first round of chemo with AC. 
I was scheduled to have 4 rounds of it and believe me, time flew so very slow at that time. I was trying to get back as normal as I can after the 4th day, going back to work, taking the subway....But I know exactly, I have to go easy on almost everything. 





Luckily, my bosses and the office are fully supportive. Although it was in the middle of crazy session of the the UN GA Third Committee, but I took things at my own pace and tried my best to manage all those stressful works and meetings amidst my chemo schedules. I also tried to stay healthy as I had to be fit enough to continue my treatment. If I had flu or infection or fever for example, I have to wait until my body is strong enough to receive another round of toxic that kills my cancer cells. That's why they had to check my blood cell counts before my chemo.


Alhamdulillah lagi, atasan saya dan teman-teman di kantor pun mendukung. Terus terang, saya sempat kepikiran bagaimana dengan tanggung jawab yang saya miliki di kantor selama masa pengobatan. Untungnya, setelah 3 - 4 hari istirahat pasca kemo, saya bisa kembali ke kantor meskipun agak keleyengan. Pelan-pelan saya menyesuaikan kondisi badan dengan beban pekerjaan yang ada. Di tengah masa sidang Komite 3 Majelis Umum PBB yang menggila, saya tetap berusaha memenuhi tanggung jawab saya walaupun harus berbagi dengan teman lainnya yang pekerjaannya juga sudah banyak. Rasanya tidak enak, tapi saya sadar memang saya belum sanggup untuk bekerja full seperti biasa, walaupun semangat tetap membara. Banyak yang terlewat, tapi sebisa mungkin saya penuhi. Again, not that easy, tapi Allah SWT memang adil dan saya diberi kekuatan ekstra untuk menjalani ini semua.



Well, yang pasti, saya harus extra jaga kesehatan karena selama kemo saya tidak boleh sakit. Dengan terpaan racun di tubuh, mau tidak mau tubuh pun mengalami penurunan daya tahan yang signifikan. Jadi, batuk dan pilek yang mungkin sepele bagi orang sehat, bisa menjadi masalah besar untuk saya yang tengah menjalani kemo. Karena itu, setiap menjelang kemo, saya harus melakukan tes darah untuk memastikan sel-sel di tubuh saya cukup untuk menerima pengobatan berikutnya. Untung, sekali lagi, saya bisa tetap sehat dan menjalani pengobatan sesuai jadwal.

Selesai dengan AC, saya juga menjalani 12 rounds of Taxol and Herceptin. Compared to AC, this is really a walk in the park. 

Well, no more nausea and vomiting, just a bit of fatigue, that I got so used to now, and tingling sensation at the tip of fingers and toes. If AC was given every 2 weeks, Taxol and Herceptin were given every week. After a while, everything feels like a routine and everyone in the clinic feels like family to me. I managed to come back to the office after just a day off. And my weekly trip to the clinic was much more colorful as well :)


What's annoying from Taxol and herceptin is the worsening tingling sensation on my toes and fingers. Rasanya seperti kesemutan, tapi permanen. Mengganggu banget kaaaan hehehe. Dan walaupun kemonya sudah lewat lebih dari 1 bulan, tapi masih kerasa dampaknya sampai sekarang :(.


My (not-so-new) hairstyle...
But the impacts of chemo are truly enormous. 
Dampak dari kemoterapi memang banyak. 
You wanna know some of them? At least, there are some that I myself have experienced during my treatment... 

I'll put them in my next posting, okay..this one is a bit too long already :)


Well, again...it's not an easy process, rather a long and winding road for me and my family...but stay positive and always feel grateful will help you get through it. 
As simple as that...
Because of course, I have to say it's a painful process and there's nothing I can do about it. Feeling those IV needles getting in to your skin on such a frequent time, managing nausea and other discomfort, coming to the the clinic every week, taking pills and more ...
Like it or not, as I wanted so bad to get rid of all these cancer cells, I have to go through these procedures and learn to dance with the storm :).

Aaah.. Alhamdulillah, sebagian besar dari prosedur ini sudah selesai dan sekarang, mari kita lanjutkan dengan tahap berikutnya :)...

Semangaaaaat...


References:

For Women Facing Breast Cancer, American Cancer Society, 2009
NYU Hospital Center on Chemotherapy, 2014 Chemotheraphy and You, National Cancer Institute, 2011