Making Strides against Breast Cancer 2018 - Go Pink

 

"Dear passengers, we are about to land at JFK International Airport, New York City.

Please make sure you fasten your seatbelt and make sure your food tray as well as your foot rest are folded."  

I was looking down the window to see the fascinating view of New York City from above when the flight attendant reminded me that we were about to land.

It obviously felt great to be back to the Big Apple, although it was only for 7 days.

And most importantly, I would join one of the most inspiring events in my life, Making Strides against Breast Cancer 2018.

NYC,  I'm back and I'm ready to kiss breast cancer goodbye!

***

Thank you sooo much Erma and Haryo :)

New York City is calling me back for a week of meetings.

I was lucky to be here just in time for Making Strides against Breast Cancer 2018 in Central Park.

The walk this year took place on Sunday, October 14, 2018, a day before I started my meeting at the Third Committee of the UN General Assembly.

And this will be my fifth walk in a row!

Wuhuuuu!

You never walk alone..

I still remember my first walk in 2014. 

It was in the middle of my chemo and I went out feeling week with my bold head to the cold October day.

But I was so excited and full of spirit.

Meeting other survivors gave me a huge dose of determination to fight back.

To believe in myself that I can be free of cancer.

And now, 5 years after that, I'm back for my 5th walk as the survivor.

As always, I registered our team, Indonesia Ceria & Beyond, to participate in this year's walk. Some friends have confirmed to walk with me and I am so grateful for them. Thank you so much Erma, my dearest sister-in-crime; Haryo; Eliza; Nabil ad Razzan! It was an honour to have you guys walk with me!

So that morning, I met Erma and Haryo right in front of the UN Headquarters and took M15  as well as M66 bus to Central Park.  As always, Making Strides walk starts and ends at the  famous Bandshell in Central Park, which is located at  the 72nd Street Transverse. 

I woke up a bit late that morning, thanks to jetlag that made me sleep at 4 AM NYC time. But we managed to arrive at the Bend Shell at 9 AM. Not bad! And the check in for all participants has started at 7:30AM. As announced in cancer.org website, the first rolling or the start of the the walk began at 8:00AM and ended at 10:15AM. Just like previous years, the walk concluded around  12:00PM.

Mini me and I!

This 4-mile walk really attracted thousand of New Yorkers! 

When we arrived, it was packed with people and many of them were coming with their team, wearing pink and all those special costumes. I can say people of all ages in all costumes are there to spend the day with us the survivors in the park and also walk. 

It's also heartwarming that the route for the walk is accessible to strollers, walkers, and wheelchairs. It's open for everybody!

There are non-stop entertainment as well as we have talented singers, DJ and bands entertaining us.

The first thing I did was stepping in to the Survivor tent!

It always gives me a goosebump and a wonderful feeling at the same time.

Being able to stand in front of the SURVIVOR tent never fails to make me feel how blessed and lucky I am. 

I 'm still fighting the side effects of all those procedures I went through before but I'm here!

Standing tall, feeling better about myself and determined to live a healthier life, while advocating others to do the same thing.

I'm a survivor!

Read more stories about my fight here:  When You Lost Your Hair  and Why Me? Fighting Breast Cancer 

So, at the survivor tent, I picked up my free t-shirt, wireless bra, as well as free breakfast from Starbucks and pink roses! I also wrote my name in the big banner saying You Never Walk Alone. We took pictures here and there.

This year is special as Avon is joining American Cancer Society to host this walk.

I also see Normani Hamilton from Fifth Harmony, joining her mother, a survivor as well, in this walk.

We joined the walk around 10 AM and we followed the route designated.

I didn't finish the walk this time because I had to admit I was super tired.

Flying from Jakarta and stopping by in Tokyo with the total traveling time of 23 hours really took a tool on me. I felt that my feet were swollen so that I decided to stop the walk just in the middle of it. It's a bit disappointing but I know I made the right decision.

Fight like a girl!

Let's walk

Well, at least my spirit continues and it roars up high every time I meet others survivor.

One of the biggest challenges that we survivors face is to stay healthy and manage the damaging side effects of the treatment we have received to get rid of cancer cells.

Coming back to NYC celebrating this positivity and excitement is indeed a great experience!

Being a cancer survivor is indeed a bless and I'm grateful for all the love and support I receive from everyone up until now.

So, that's my story from Making Strides against Breast Cancer 2018 - Go Pink!

Hope I can join Making Strides against Breast Cancer 2019 as well.

If you feel like donating this great movement, please check  

www.makingstrideswalk.org

Let's kick some cancer cells!

So please, please, please, ladies...remember that early detection is the best protection.

If you feel and see something different in your body, check it.

Don't forget to do self breast exam, mammogram, and live a healthy, balance and happy life!

Stay healthy and blessed, people!

Making Strides against Breast Cancer - the Walk and the Prep

October is here!
One of my favorite months, during my favorite season, and with my favorite cause!

MAKING STRIDES AGAINST BREAST CANCER!

Cheers from the three of us

 
Dan artinya, kita siap-siap ikutan Making Strides against Breast Cancer lagi di Central Park!
Acara jalan tahunan ini memang selalu saya nantikan.
Rasanya gimanaaa gitu kalau ngga ikutan.
It feels like I’m joining other fighters and recalibrate our spirit to fight!

Menjadi penderita kanker itu memang tidak mudah.
Bener-bener life-changing experience deh!
Setelah divonis dan menjalani rangkaian pengobatan yang tidak mudah dan tidak murah, kami dihadapkan pada perjuangan seumur hidup untuk menjaga agar sel kanker tidak kembali lagi dan juga melawan aneka dampak yang dirasakan akibat kemoterapi dan aneka terapi lain yang dijalani.

Well, being diagnosed with breast cancer really sucks!
I’m not complaining here.
But for sure cancer changes my life!
That's why, after all the procedures and struggles I have to go through, I feel like I need to share those positive vibes and spirit to those who are facing the same battle, or those who accompany their loved ones fighting breast cancer, or simple those who need some moral boosts :).

And here I am... joining Making Strides against Breast Cancer at Central Park, for the 4th time. 

my #pinkhero cap

Boleh kan sekali-kali bilang perjalanan melawan kanker ini berat!
Makanya harus selalu semangat, ya kan?
That’s why, setiap ada kesempatan untuk berkumpul dan berbagi dengan para survivor lainnya, saya tidak sia-siakan kesempatan ini.
Saling bertemu, saling mengingatkan, saling menguatkan.
Betapa bersyukurnya kami karena diberi kekuatan untuk berjuang.
Dan sembuh!

So, dengan semangat 45, saya mengundang keluarga, teman, kolega dan siapa saja yang berkenan meluangkan waktu sejenak untuk berbagi di acara ini.
Good thing many people have decided to join me this year.
I have around 20 people signing in already.
Not bad for an adhoc group I just set up recently.
And that SUnday morning, we all gathered at 8 AM in Central Park.
Ready to stride and contribute to the fight against breast cancer.

My dearest team, not yet complete, IndonesiaCeria & Beyond

Alhamdulillaaaah banyak pula yang berkenan berikan donasi lho.
Super happy to see people are willing to share to those who need this support and assistance.
I personally gathered USD 435 dan total dari tim adalah USD 678.
Asyik kan!
A bit more than last year but still the highest record I have made was 2015, when I got around USD 1200.
It feels sooo good to do it for a great cause!

So, long story short, Making Strides against Breast Cancer was a great success and I was happy many of my friends (and my bosses ;)), showed up and joined me.
Seneng banget bisa berbagi semangat dan harapan untuk sembuh dan 'bersih' dari kanker!

Di balik keseruan acara ini, ada beberapa tips sederhana untuk persiapannya nih.
There are alot of preparations we have to do for this walk.
And let me share it here for you.

1. Check my team member

First thing first, make sure you have your team. 
Pastikan kita punya tim!
Eh, sebenarnya ngga papa sih, tapi akan lebih seru kan kalau ramai-ramai bersama sahabat, teteh, uwa, temen, or ayang tercinta.
Setiap tahun saya selalu woro-work sana sini untuk ajak keluarga, teman-teman dan juga kolega kantor. Atau siapa saja yang mau ikut :).
Biasanya sebelum hari H saya akan sampaikan email untuk mengundang mereka ikutan jalan. Mereka akan dapatkan link email untuk gabung dengan timku yang lucu, IndonesiaCeria & Beyond :). Kalau mereka ngga sempet klik link, mereka bisa langsung cek website Making Strides against Breast Cancer dan join the walk et join my team.

Kali ini, jumlah tim saya 21 orang.
Jumlah terbanyak yang pernah saya kumpulkan.
I have 21 people in my team and I am so blessed! 

Pastikan teman-teman tahu persis kapan acara akan berlangsung dan juga rute yang akan ditempuh. Daripada salah jam or tanggal, kan :).
Setelah semua konfirmasi, beberapa informasi mendasar seperti tempat, tanggal, jam, rute jalan, dress code dan meeting point.

2. Double check the donation

Salah satu tujuan utama dari event ini adalah mengumpulkan dana untuk berbagai kepentingan terkait pengobatan kanker payudara. Mulai dari riset untuk pengobatan terkini sampai bantuan pengobatan bagi penderita kanker payudara yang kurang mampu.

Karenanya, donasi sangat diharapkan.
Mereka yang hadir maupun yang tidak bisa hadir diharapkan bisa membantu mendukung kampanye ini dan berkenan menyisihkan sebagian kelebihan rezeki mereka untuk mengurangi dan bahkan menghapuskan  kanker payudara dari muka bumi.

So, saya pun penuh semangat membantu kampanye ini.
Walaupun saya harus akui kalau saya tidak bisa fokus penuh dengan upaya kampanye, tapi alhamdulillah di sela-sela pekerjaan yang lagi lucu-lucunya di UN, terkumpul juga USD 678, dan sebesar USD 435 dari personal campaign yang saya lakukan.

3. Prepare for the walk

Making strides itu lumayan lho!
Jalannya sekitar 5 miles atau kurang lebih 8 km.
Buat yang tidak terlalu biasa jalan kaki atau kondisinya tidak memungkinkan untuk jalan sebaiknya ngga perlu memaksakan diri memang. 
But for me, making strides is more than just a walk.
Karenanya, saya juga harus siap lahir batin, terutama untuk jalan di Central Park, yang dimulai jam 8 pagi, dengan jarak yang lumayan.
Persiapan paling penting buta saya adalah sepatu!
I have to make sure that I put on my most comfortable shoes.

Dan untuk urusan sepatu, suami saya lebih serius lagi. 
Sepatu pria terbaik dan ternyaman adalah pilihan dia untuk menemani saya menyusuri Central Park miles demi miles hingga finish line.
Dan percaya kan kalau urusan sepatu ini suami saya bisa menghabiskan waktu lebih banyak daripada saya masak nasi kuning lengkap dengan lauk pauknya!
Details banget deh pokoknya.
Mulai dari memastikan ukuran yang pas dengan kaki dan kontur kaki, ketebalan dan jenis solenya, panjang tali sepatu (supaya yakin ngga kesrimpet :)) dan warna sepatu yang matching dengan seragam kami di hari H.
Ribet ya :).

And that's the shoes. 

Jangan lupa juga cek cuaca di hari H supaya tidak ada cerita salah kostum.
Apalagi Oktober sudah mulai dingin-dingin manja di New York City.
Salah kostum bisa-bisa bikin sakit dan menggigil kedinginan, atau dompet jebol karena mendadak harus beli jaket hangat on the spot. So, double check dan pastikan pakaian yang dipakai pas dan juga keren plus sesuai dengan semangat pink di hari itu.
You know what I mean, right.

4. Logistics, logistics, logistics

Logistik nih penting banget! Sama pentingnya dengan lipstik dan pinsil alis #lho :).
Selain keperluan untuk jalan, ada banyak properti yang khusus saya siapkan untuk acara MSABC kali ini. Seperti biasa, semuanya didominasi dengan warna pink dan ungu (of course).

Ada properti untuk dipakai tim, ada properti yang saya siapkan khusus untuk foto.
Untuk properti tim, saya siapkan kalung mainan, kacamata, kumis palsu, topi, wig dan feather boa pink! Plus wig ungu dari Comic Con kemarin :).
Untuk properti foto, selain properti di atas, saya juga siapkan frame foto warna pink dengan segala hiasan pink dan ungu, warna favorit saya.

Untuk makanan dan minum saya tidak begitu khawatir karena setiap miles ada minuman dan di finish line ada refreshment lainnya, seperti chips dan licorice serta cemilan lainnya. Khusus di tenda survivor, ada kopi dan roti, plus air kelapa kemasan.
So, untuk urusan perut, insya Allah aman :).
Kalau mau bawa sarapan sendiri tentu saja dipersilahkan lho.
Dan pssst, saya sama mama bawa macaroni schotel dan martabak sayur hehehe.


5. Get ready to have fun and say cheers!

Last but not least, jangan lupa untuk ENJOY THE WALK.
That’s the reason why we all gathered at Central Park that day.
Enjoy the blessed life you have and the opportunity to help others who are fighting the same thing.
Enjoy the love you share with others and positive spirit you get around.
Together, we can finish this fight!

So, meskipun tahun depan saya sudah kembali ke tanah air as I am scheduled to go back home for good in , this positive vibes and great spirit will stay within me.

Selalu sehat-sehat ya teman-teman.
Dan semoga kita pun tidak perlu berurusan dengan kanker!
Cheers!

Genetic Test for Breast Cancer Patients

October is here.

And so is #breastcancerawareness.

I feel bad for not writing stories related to the procedures that I have done since I was diagnosed with breast cancer in 2014.
I really do.
I feel like I have so much to share about the whole journey that I have to go through as a breast cancer survivor.

It was only 3 years ago and even up until now, I am still continuing my medication and under close observation of my oncologists.

I know I have written many and for sure you can read some of the previous cancer-related posts I published here:

And I'm a fighter
Early Detection...As easy as 1,2,3,..
After the Mastectomy...What's Next?
Look Good Feel Better
Why me?

Rasanya belum lama saya mendengar vonis kanker payudara dari dokter umumku yang baru saja bertemu setelah 2 bulan saya berada di NYC di tahun 2014.

Dan Oktober 2017 kembali menghampiri.

Tahun ketiga saya menyandang predikat sebagai peretas kanker payudara. 
Ada begitu banyak cerita, penuh suka duka dan semoga informasi berharga, yang ingin saya bagi dengan teman-teman semua.
Tentu saja saya berdoa teman semua bisa selalu sehat dan prima, namun mungkin saja cerita perjalanan saya berjuang melawan kanker bisa bermanfaat bagi saudara, rekan, teman, tetangga, kerabat atau siapa saja yang membutuhkannya.
Dan kali ini, saya akan share mengenai tes genetika bagi penderita kanker

So this time, let me share some stories about Genetic Test for Breast Cancer Patients.

I remembered when I have finally agreed to take genetic test in relation to the breast cancer I have.

Stay healthy, everyone..

Genetic breast cancer test

If you have heard of Angelina Jolie-Pitt story and her double mastectomy for avoiding cancer that apparently runs in her family, then perhaps you are aware of genetic cancer. 

As I read on cancer.org, "about 5% to 10% of breast cancer cases are thought to be hereditary, meaning that they result directly from gene defects (called mutations) passed on from a parent." 

It means that if you mom, or your aunt, or your first-degree family from your mother sides have the history of cancer, particularly breast cancer, then there are big chances that you have have high risk of having breast cancer as well.
And if you read more about genetic test for breast cancer patients, perhaps you see the term BRCA1 and BRCA2 often. Cancer.org further stated that "the most common cause of hereditary breast cancer is an inherited mutation in the BRCA1 or BRCA2 gene. In normal cells, these genes help make proteins that repair damaged DNA. Mutated versions of these genes can lead to abnormal cell growth, which can lead to cancer."

Expensive test?

I know, right.
I have been warned that it is not a cheap procedure.
It's an expensive test indeed and I gotta to admit that the first question I have is whether the test will be covered by my insurance. 

Frankly, with all the series of treatment that I have to go through and the work I have at the office, paying extremely expensive bill is the last thing I need right at that time. But after consulting with my insurance at that time, it was indeed covered.

So, in the middle of my Herceptine treatment, I decided to take the test. 
Having my aunty from my father's side just recently being diagnosed with breast cancer and not to forget that I have my little daughter as well, I am intrigued to know whether cancer is actually in my genes or not. 
I feel like if I know it for sure, then I know what to do to make sure that my daughter Obi is all good.

The test

"The BreastNext gene panel performed by a specific  genetic laboratory has tested for 17 genes associated with hereditary cancer, including the high risk breast cancer genes, BRCA1, BRCA2, PTEN, TP53, and CDH1."

That's what the booklet I have received about the test specifically mentioned.

It might sounds familiar to some of us but for me, the genes and all that are new things that I need to learn more. So, basically, these genes I mentioned above will mark whether I have the cancer because of my family history or because of something else.
And if I do, it means, my daughter Obi will have a high risk.
Scarry, isn't it.
Thinking about your wonderful daughter having to endure the same struggle against breast cancer :(.

So, again, in one of my Herception sessions, I have  took the test.

Nothing much to do but a lot of discussion and some blood draw.  

Yuup..tubes of samples of my blood for the test and that's it. 

I just need to wait for the result.

Before that, I was asked quite a lot of questions regarding the family medical history, particularly cancer. From both my mom and my dad's sides.

I have been trying to remember, and ask around, about this family history.

Apparently my aunty from my mom's side has breast issue, but not breast cancer.

It was only calcification. 

And my grandpa from my father side had throat cancer, while my aunt from my dad's side has breast cancer as well.

 

After approximately 3 weeks, the result has come back.

You know what the result is?
It is INCONCLUSIVE.

Do you know what it means? First I got confused but then after reading the result and discuss a lot with the genetic consultant, I can have a relief.

As I read from the summary of my genetic test report, it is concluded that the panel from my test did not detect any known deleterious mutations. Furthermore, I also tested NEGATIVE for mutations in the remaining genes on the Cancer Gene Panel, including: ATM, BARD1, BRIP1, MRE11A, MUTYH, NBN, NF1, PALB2, RAD50, RAD51C, and RAD51D.

However, a variant of uncertain significance (VUS) was identified in the CHEK2 gene, known as c.538C>T (p.R180C).

And this is the explanation offered by my genetic consultant:

"When testing through multi-gene panels, detecting variants of uncertain significance is common. Specifically, a variant of uncertain significance means that a change in the DNA sequence was detected, but its impact on cancer risk is not fully understood. The laboratory that performed the DNA analysis does not have a test at this time to determine the effect the variant has on the gene function and cancer risks. We discussed that over time, as the lab collects additional information about these variants, they may be able re-classify them. Should the variant of uncertain significance be reclassified by the laboratory, the genetic counselor will receive an updated report."

Although many variants will ultimately be re-classified as benign, at this time your patient's result should not be considered positive or negative. It is important to realize this test did not determine the underlying cause of her family history of breast cancer. The specific recommendations about her management and future screening depend on the characteristics of her age and other personal risk factors. The family history of breast cancer should still be considered when considering appropriate cancer screening. We recommended she discuss this further with you and her other physicians.

As discussed with the patient, although this reduces the chance that Ms. Savitri has an inherited susceptibility to breast cancer, not all of the genes that may cause inherited breastcancer susceptibility have been identified at this time, so the chance of inherited breastcancer susceptibility cannot be ruled out completely. It is possible that more gene tests will be available in the future that might be appropriate for the patient and her family. 

We discussed that in regards to risk for other family members, such as Ms. Savitri’s mother and daughter women who have a first-degree relative (mother, sister, or daughter) with breast cancer have approximately twice the risk to develop breast cancer compared to women in the general population. This risk would be higher in the presence of other relatives with breast cancer.  This risk may be due to shared genetic and environmental factors, even though the results of genetic testing such as for BRCA1 and BRCA2 may be negative. The lifetime risk for women in the general population to develop breast cancer is 1 in 8 or 12% to age 70. 

Testing family members for the VUS is not indicated at this time. Recommendations for family members should be made based on personal and family history and risk assessment.

Risk Management Recommendations

No changes should be made to this patient’s surveillance practices without them first having a detailed discussion with their physicians and these options may be further modified on a case-by-case basis with the patient’s referring physician.

Given the results of genetic testing, no changes to Indah's care is indicated at this time.

Management recommendations are not indicated for a VUS in the CHEK2 gene alone.  Instead, management recommendations will be made based on personal and family history and risk assessment.

When no mutation is detected by the these gene panels, current recommendations suggest that women with a family history of breast cancer begin screening 10 years earlier than the youngest age at diagnosis in the family. Because these recommendations change over time, it will be important for them to discuss the family history with their physicians."

That's literally the copy of the report and my test's result.
It know it might be a lot to chew but in conclusion, my cancer is not coming from my genes. It is not hereditary.

The fact that my aunty from my father side had breast cancer as well is pretty much the personal medical problem, not because of our genes.

It was such a relieve as it means that Obi doesn't have to bear the consequences of have her mom as a breast cancer survivor. Of course she needs to live healthy like each and everyone of us, because nowadays, there are so many triggering factors which make us more vulnerable with cancer.

So, stay healthy, everyone!

 

Wonderful Wednesday with Oh My Heartsie Girls

How is your week?

I have to admit that I am super blessed with colorful life!
And as October is soaring, so is #breastcancerawareness.

Have you got your mammogram?
Have you done self breast exam?
Have you take care of yourself?

I sincerely hope you have :)
And help support my fight in Making Strides Against Breast Cancer - Join the fun and help  

And meanwhile, my kids and I were having soooo much fun at the New York Comic Con 2017 at Javits Center last Sunday. 

say hi to Fiona :)

Wonder Woman!

Leading up to Making Strides against Breast Cancer in Central Park next week, we have a great support from Chevrolet at NYCC 2017!
They brought the pink Chevy to the Convention.

So, how's your week?
Are you ready to join #OMHGWW with our great hosts here?

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