It has been almost a month since my last shower. During radiation, I am not allowed to shower as I have too many lines on my body. Till now, they have had to redraw it 4-5 times over the past month. Every time they redraw the lines, I have to wait for them to dry. Most of my innerwear has had the lines reprinted on them, for I wear my clothes too fast. I am so looking forward to the first shower! I would have to be careful about my skin for it has been weakened by the radiation. It is now red and blotchy, with brown spots all over. I wouldn’t be able to bathe in warm water or scrub it for 4-6 weeks after radiation ends. Imagine bathing in room temperature water during winter. It would probably feel like a cold shower. Still, I am looking forward to letting the water fall down on my body. Having the water pat on my back feels relaxing after a long day. Kind of gets the muscle knots away.
These lines go all the way down my belly, 2 rows of them.
I have been missing home badly these few weeks. Miss having friends I can chat non-stop with, miss having people around who won’t judge me. It is tough publishing my life for others to see, for no matter what I do, there will always be some who disagree. There are so many things I wish I can talk to someone about, to laugh and cry together. I am sometimes so confused I end up mumbling non-stop to God. I don’t wish to live my life according to how others want me to, nor do I wish to live my life as a bad person. All I can do, is to pray for the Lord to guide me in my ways so that I do not go astray.
We finally fixed the cd player in our car. We had to change a new car, as our old car was too old and was running on diesel. Due to the Korean government’s new environment protection laws, we had to scrap the old car. The new laws prohibited the old car from entering Seoul’s city centre in the day and from driving in days when the pollution index is high. A month after the law was passed, we got fined twice on our way to the hospital. We had unknowingly passed a gantry and had to pay a fine of 100,000 krw each time. Thankfully we appealed and they waived one off, on account that I was going to the hospital. The new car came and had several problems, since it was an old car. We had to fix it way before, but due to our crazy schedules, we delayed it till now. Though our schedule now is still crazy by most standards, it is better considering that I am in a better condition. Once it got fixed, I had been yearning to play some old worship cds on it. Unfortunately now that the player is fixed, I can’t find my cds. Instead, Hwan found an old Chinese worship album and we played that today. I cried when I heard the songs, for they were the same songs my dad loved when he was still with us. My dad was diagnosed with Stage 4 Oesophaegus cancer and he had always been against me going to church. When he was in the hospital for the final time, my church friends got me an ipod and saved all these songs for him. Though they were all chinese worship songs, he loved them. He had a change of heart about God towards the end of his life and asked Mom to support me in going to church before he passed away peacefully. I cried as I now fully understand what he was feeling when he went through treatment back then. It hurts me to know how much he was suffering. We have all heard about how hard cancer treatments are, but to go through it myself has made me sure that I want to be there for anyone who is going through this. I want to hug them, listen to them and be with them to support them.
My joints ache, my body is physically exhausted but I feel mentally alert most of the times. I still have chemo brain and brain fog on some days especially when I am physically tired. It still hurts to type and my nails are so brittle they break easily, even the nail bed gets affected. I tried opening a knot last week and my already short nail just folded in half (even in the nail bed). I screamed in pain. I can’t cut them any shorter, for I would be cutting in to the nail bed. Radiation has also caused my throat to swell and sometimes I find it hard to swallow. Even drinking is tough now, and I choke sometimes on water. On certain days I can eat well, but on certain days I struggle to get anything down. Thanks to friends who send food over, I try to eat even when I don’t feel like. But since I have been rejecting food mostly, Hwan has been eating double portions until recently he told me he can’t from now on. So we cook just one portion and see if I can eat it. If I can, he cooks again. If I can’t, he takes it. Unfortunately, due to my weird tastes, it has become really hard to cater to my palate. My tastebuds are creating havoc and what tastes ok to some people end up tasting weird for me. What may work one day end up not working the other. Those that we can freeze, we do that and I try them another day. After 3 tries, if I fail consistently to eat them, then Hwan gets to eat them. There were days he ended up eating all of the food sent to us, simply because I just wasn’t eating anything. There were times I requested for certain foods and ended up not being able to eat them. I would stare at the food and try to eat it with my imagination and imagine the taste. Though I can’t eat some of the foods my friends send, their gesture warms my heart greatly and keeps me fighting.
Much as I try and reject it, cancer had changed our lives. I remember someone close to me saying that cancer didn’t only changed my life, but also the lives of those helping me. They had to give up somethings to help me. That simple truth hurt me badly. I didn’t want people to sacrifice when helping me. I wanted them to be blessed more than anything. I didn’t want them to suffer because of me. After that, I was reluctant to let others help me again. I hated to think that I was robbing them of something. I prayed repeatedly then, for abundant blessings for all my donors and helpers. Till today, I repeatedly ask God to bless them for they deserve so much more.
Should I have kept my fight private? Maybe. But then I may have missed the chance to see God’s goodness. Through this, I have come to realize certain things must be let go. I’m not perfect and never will be. I strive to be the best I can, and to be strong in the midst of all these things happening. Certain days I fail and I crumble. And very often, when I crumble, that is when God steps in. When I meet some of my friends, I am reminded of his love for me. Love just radiates from them, even though we only meet for 5 minutes. Yet, I am thankful. No matter how I waver, He is the same. Yesterday, today and forever. Thank you God, for being my rock. You are a God who performs miracles and never gives up on us. I do not understand why some things are happening, but I know you are in control. And when you are in control, that is when I need not fear. Let me not ask why I do not have, but instead let me focus on what I have and be thankful. For with you, I have everything.
Give thanks to the Lord, for he is good. His love endures forever. – Psalm 118: 1
The Lord is with me, I will not be afraid. What can man do to me? The Lord is with me; he is my helper. I will look in triumph on my enemies. – Psalm 118: 6-7
What do you do when you are asked to make a choice that will have either increase or decrease your chances of survival by 20%? This was what I was asked to do at the start of my chemo treatment. I remember sitting in that big room with Hwan, faced with 3 doctors and 1 nurse. 1 oncologist, 1 surgeon, 1 radiotherapist. It was a one-stop cancer centre, they called it. They said that surgery first was not an option for me, for my tumor was big and it belonged to a subtype called HER2, that responded well to chemotherapy. So they recommended 6 rounds of chemo, before surgery, then radiation with more chemo. They told me I had to choose. To go with Herceptin for my target chemo, or Herceptin and Perjeta. Herceptin is covered by government insurance, while Perjeta isn’t. We asked how much the bills were, they said with Herceptin, very cheap, less than 100,000 krw each time. With perjeta, 2-3 million krw each round. After surgery, I can look at spending about 40-60 million krw on chemo. Then they dropped the bombshell. With perjeta, survival rates are about 60%. With only herceptin, 40%. We stepped out of the room and was told I can’t start chemo until I decide Perjeta or not. We went home and I cried non-stop. I couldn’t imagine slashing away 20% of my survival rates just because of money. I wanted all the chances I could get. But where on earth was I gonna find such a huge amount? Those early days gave Hwan and me many sleepless nights. Coupled with the trauma of diagnosis, we had many decisions to make.
Why am I talking about this now? Because I realized many people find it hard to believe my bills are so high. I don’t blame them. Korea has a heavily subsidized health system. Medical costs are way cheaper than back home in Singapore. Still, chemo drugs are crazily expensive. In Singapore, my chemo regimen TCHP (Docetaxel, Carboplatin, Herceptin and Perjeta) would cost about SGD 8,000 – 12,000+ each cycle. Here, I pay about 1.3 million krw – 1.9 million krw (about USD 1300 – 1900) each cycle.
Initially the hospital told me that most likely I will need a drug named kadcyla after surgery. This drug was not covered by Korean insurance and I will need to pay for it. The costs were estimated to be about 70 million krw (about 70,000 usd). Amazingly, praise God! For after surgery, I had no visible cancer left in my lymph nodes and the tumors shrank till they couldn’t be seen on mri. My onco declared me cancer free and I was told that I wouldn’t need kadcyla after all! Yay! I would only need Herceptin, which was heavily subsidized by the government insurance. No one expected this and most ladies who had tumors in their lymph nodes like me, had residual cancer in their lymph nodes even after chemo. I know that my case is nothing short of a miracle.
Today, while waiting for my radiotherapist consultation, I saw how a nurse talked with another patient. The nurse was rambling on about the tests and scans the patient has to go to. She also spoke about the time frame for no food no drinks etc. I saw the confused look on the patient. It reminded me of how I was. Now, I can remember all the scans, the tests, the drugs I am taking. Back then, I didn’t even know what was HER2. If you have a friend who has just gotten diagnosed, do consider accompanying him/her for the appointments. I had Hwan with me at the start, and though the doctors spoke Korean, he would walk out of the room and be like “what did they just say?” We had everything thrown at us by the professionals, and it was just too much for us to handle. Having someone else there with us would have been extremely beneficial.
Just last Thursday (Oct 8), I had my 9th round of Herceptin. Before I could have that, I had to pass my heart ultrasound. The patient before me had some issues, so I was left alone in the room waiting for the doctor. I glanced at the monitor and saw the scan of my heart. My heart was pumping vigorously, with the heart valve opening and closing. Tears welled in my eyes, as I thought of how strong my heart is. It has to be strong enough to withstand 18 cycles of Herceptin. I also remembered the day we first listened to the little one’s heartbeart. I remember how sweet the sound was. And now today, this is mine. I pray that my heart will carry on beating strongly for the next 50 years and more. I pray that my heart will be strong enough for all the joy, tears that my journey will bring. I pray that my heart can love more people and bless them with love. Thank you Lord. I know I wouldn’t have been able to come so far without you. Thanks to you, this cancer journey is so much more bearable and filled with so much joy and hope. Thanks to you, I know the doctors do not have the final say. On days when I can’t eat, your words will be my bread. On days when I can’t run, your words will be my wings.
Wow! It’s about 2 months after my surgery. I still can’t believe how far I’ve come. Lots of things have been very surreal recently, as many things have happened. Especially these few weeks as my emotions have been on a roller coaster. It has been hard, as I lost two of my friends to cancer in 1 week. I know they are in a great place now, where their sick body torments them no more. But I am just a human. Though I know, I ache and miss them. I remind myself that I must live my life in a more meaningful manner for them. So that when we meet again in our eternal home, we can hug and rejoice at what our lives have been. Unfortunately as I mentioned earlier, my joints have been aching so much, especially my finger joints, that I can’t type as much as I used to. Been wanting to finish this post, but finally gave up, and am now deciding to post it without finishing it. If I wait to finish, I think I will never get to finish it and the backlog will just keep getting longer. Halfway through, you will see that I am only blogging about certain dates. Days which are significant to me.
Note: This post is updated till 2 September 2020. The rest will be updated in the next post.
Day 5 Post Surgery
Woke up this morning feeling quite tired. Perhaps it was due to me using up too much energy yesterday, trying to accomplish so many things. That is one weakness of mine, as I tend to overspend myself. Often, I have to keep reminding myself that to rest is for a longer journey. I am here on a marathon, not just a sprint. Amazingly this time round my taste is taking its own sweet time to come back. I still can’t taste most foods and I am nauseous most of the time. I am unsure why but I guess the last chemo has really affected my tastebuds. Couldn’t eat much for breakfast, but was somehow looking forward to lunch. I love how we get to choose our meals on the tv. Choosing the meal became my highlight everyday as it gives me something to look forward to. Simple thrills in the hospital makes life there more interesting sometimes. I must say though, that this hospital stay is becoming the best stay out of all the hospital stays I have had since March this year. I have made friends, friends whom I know I will look forward to seeing outside of the hospital. Thanks to them, the hospital stay has also become more interesting and meaningful. I love spurring them on everyday and I pray daily, for their health. After all, I believe that’s what we have to do as believers. There is power in prayers. When we fight with our body, we get tired and exhausted. When we pray, God fights for us. He takes our burdens as His own. Of course you may say that if God is so powerful, why do I need to pray? He should know our thoughts already. Actually, He does know our thoughts. But he doesn’t control us or force us to think a certain way. He is a righteous God who allows us freedom of choice. Sometimes our choices hurt Him and make him sad. But He never forsakes us. When chemo brain affects me, I sometimes pray gibberish. Or I simply say, God help me. I don’t believe prayers need to be long or filled with long words. I think prayers are just a sincere cry from our heart and they can be short. We spent the day talking with our friends in the ward, and nurses come in commenting that our ward is the most lively ward in the whole floor.
Me exercising with my roommates. Taught them my daily exercise.
Day 6 Post Surgery
This is the day I get to leave the hospital! Yay! Woke up with no expectations for the day, yet God gave me a huge present right when I least expected it. My surgeon came over during his rounds and started telling me the results of my surgery. He said that I had clear margins, which means no need for a second surgery! Then, he said that a bunch of stuff which I couldn’t quite understand (my brain was just stuck at where I didn’t need a second surgery). Finally, all I had to ask was so did I get a PCR? To which he said yes! Yay! At the beginning of my treatment, I did some research (googling) and found that Her2+ breast cancer was one of the more aggressive breast cancer types around, with a high recurrence rate. I was determined to find research that gave good news and googled more, to find that if PCR status was achieved after neoadjuvant chemotherapy, then the recurrence rate would be lower. That was it. That gave me something to aim for. And now God has given me this! We prayed and He answered. Then my surgeon gave me another great news, that the drain I had would be removed before I went home! Praise God. After doctor left, all I wanted to do was jump and dance. Still, something he said nagged at me. He said that there were still some cancer cells left, which made me wonder if it could still be counted as PCR. Nevertheless, I decided to celebrate some first. The other patients in the ward also cheered with me, as we have all grown pretty close the past week. After that, we prepared to get discharged. Later on, my resident doctor came and removed the drain for me. It was weird having it removed, as there was no pain but the feeling of something sliding out from my body. It was also the first time I looked down and saw what everything looked like. I had a huge slit across my right breast and what looked like a bruise on my armpit and a hole covered by some bandages. We left soon, but not before getting a group photo and exchanging numbers with the patients in the ward. Many were thankful for the positive energy we brought to the ward. As always, I find it easy to rejoice when I know Jesus is for me. Fear is not present usually, and when it is, I simply imagine Jesus there with me. And the fear disappears! Got home after lunch and unpacked some, before Hwan went to bring the little one back. We have not seen him for a week and couldn’t believe our eyes when we saw how much he has grown. I miss my little pea sometimes, yet marvel at how amazingly big and strong he is now. Praying that he will be able to adjust back to life at home and know that we love him lots.
Day 7 Post Surgery
Slept well last night, though it took me a while to fall asleep. It is hard to find a comfortable position when the right side aches. I also realized that I would be unable to wear T-shirts for now and there were many things I couldn’t do. Some of them include opening the car door (on the right), opening a bottle, opening the fridge, cooking, carrying the little one, shower, shampoo etc. As I am a left hander, I never thought much about things that I couldn’t do after surgery. I just didn’t like to limit myself I guess. But I was shocked at how inconvenient everything became. Typing was tough too, as I had to lift the hands high on the table to type. I had my lymph nodes removed and it was as if my body was slowly realizing that something is missing. I would feel pain where my lymph nodes are and that area felt stinging, like there was a fresh wound there. Typing kind of makes it worse, so I had to limit myself on computer usage. Though I was under orders to not shower until my surgeon gave me the go ahead, I couldn’t resist taking one the minute I got home. Of course, I could only do so with Hwan’s help. We had to avoid getting the area wet (right breast and right side body due to drain), so I had to cover those areas with a towel while Hwan shampooed me. After dropping off Ian at daycare in the morning, we decided to head down to the Singapore Embassy to collect the national day pack and the little one’s citizenship certificate! Yes! The little one’s citizenship finally got approved and he is now officially a Singaporean! After picking up these items, we went to my friend Theresa’s house to pick up some food she made for me. Thankful for friends who make food for us now, since it is hard for me to cook. Sometimes, even though I know I need to eat healthily, I just had to order meals because none of us have the energy to cook. And home cooked food is definitely better than outside food. Though we received food from Theresa, we were both too exhausted to prepare it (it was frozen) and cook rice, so we decided to go to a restaurant I had been wanting to go to. This is an Indian restaurant and being unable to return to Singapore has made me crave for the food even more. Thanks to the restaurant’s authentic Indian food, I was able to solve my craving. Went home and had a great time with the little one. Been doing my best to spend more time with him, as I really want him to feel our love and know that he is deeply loved. Being too young to understand, I do not expect him to do so or to console me when I am down, all I want is for him to know that he is precious and loved deeply by us and God.
Day 8 Post Surgery
Woke up this morning and we went to the korean traditional doctor. After going with Jaime once a few weeks ago, I started going regularly, twice a week. What I liked about this doctor is that he doesn’t really rely on herbs like most korean traditional doctors. Instead, he practices the eight constitution medicine, which believes that the body can heal itself with the right diet. I experienced a tremendous change in my body since I first met him a few years ago and I am now back in a bid to reduce the side effects of my cancer treatment. After going through 6 rounds of neoadjuvant chemotherapy and a lumpectomy (breast conserving surgery), my body just isn’t the same anymore. I constantly forget things completely, even if they have just been told to me a minute ago. Hwan still can’t seem to understand why I forget (neither can I) and it seems to get to him sometimes. Chemo brain is a real problem and I somehow wish the brain fog would quickly go away sometimes. After our doctor visit, Hwan surprised me by telling me we had to go to Gangnam to get my surgical bra. The hospital had only given me 1 bra to wear since surgery and that poor bra has now turned grey from white. To make it worse, it is also extremely uncomfortable with its velcro strips. The material is also extremely thick, so I have resorted to only wearing this at home. Well perhaps the other reason is simply because I have only one button down shirt. My arm is still pretty sore from surgery and lifting it up to wear a T-shirt takes a long time. I first have to put my right arm in (surgical side) and then try and wriggle my head in, and finally my left hand. The few times I have attempted this, I had to call out to Hwan for help as I could not pull my T-shirt down after getting my arms and head in. Everything would be in a weird position, with the shirt stuck on my shoulders. The surgical bra was quite expensive, 45,000 krw for one. If it was comfortable, I definitely wouldn’t mind. However it wasn’t and I am pretty sure I wouldn’t wear it again once I’m not required to. After getting the bra, we went to meet Hwan’s high school friend. They used to be pretty close and haven’t been able to meet much after they both got married. I’m glad we got to meet him today, and he bought us a very scrumptious Japanese meal. After lunch, it was already time to go back and pick the little one up. With Friday’s traffic, getting back from Gangnam took quite a while and as the little one has been showing signs of anxiety when his friends leave the daycare (at 4pm), we decided we would pick him up earlier whenever we can. Special thanks to Charmion, who got him this super cute soccer jersey set from Malaysia.
Day 9 Post Surgery
Woke up this morning feeling quite exhausted. As we had one whole day ahead of us, I kind of didn’t know how to make it through without sending the little one to Daycare. Thought that it would be tough for Hwan to take care of the little one and me, so asked if he would like to go to his sister’s place so the two of them could take care of 3 kids. He gladly agreed and we headed over right after breakfast. The great thing about their place is that it is bigger than ours and there are a lot more toys the little one could play with. They had a slide, which he surprised us by climbing up even when he couldn’t walk. When we got there, we were surprised as our brother-in-law was there and not at work too. Then it would be easier, with 3 adults to 3 children. While the little one had a great time exploring all the toys they had, we the adults tried to have various conversations amidst the chaos. I was mostly lying on the sofa and shouting out warnings, while Hwan tried to prevent the little one from getting into trouble. We had such a great time there that we ended up staying for lunch and dinner, as it has been a really long time since the four of us had a decent conversation. However, I was really exhausted by the time dinner came and didn’t feel like eating much. My back was aching (part behind the right breast) and I had asked the resident doctor why did my back hurt when the surgery was done on the front side. She had smiled and said that they use the same muscle (that goes from the front to the back) and that was why the back would hurt. Since then, my back has been hurting especially after I walk around or sit. Despite that, it was great to spend time with Hwan’s family. It has also been sad, watching Hwan’s dad’s condition deteriorate. His speech was getting lesser and it is getting more difficult for me to understand his speech. Really pray that the Lord will sustain him and that he will get to have a personal relationship with Jesus and know that Jesus is for him.
Day 10 Post Surgery
It’s the Lord’s day again! Even though I don’t work everyday now, Sundays always feels special. Sunday feels like it’s the day to rest, to rejuvenate, to have some good quality family time, and of course to praise and worship the Lord at church. Since covid started, church has been with all of us sitting in front of the tv. It has been tough concentrating, since the little one would be playing around us. With his daycare’s schedule, it is also tough as we have to have lunch at 11.30am and he would be sleepy by 12.30pm (the time he takes his nap at daycare). Our church starts only at 11am, so we usually can only watch the worship session, with the little one’s toys singing in the background. However, today we have something special planned. Megumi, our church friend has offered to take the little one for the day so we could rest. We were really tempted to take up the offer, but couldn’t as the little one was still pretty unstable emotionally at times. So, we asked if we could go over to spend the day with their family. We went and got there right before lunch. We had planned to arrive earlier, but Hwan didn’t feel well this morning and had to rest before we could leave. Megumi had prepared an awesome lunch for us and I wish I could eat more. After treatments, as I have not been eating well due to nausea, my appetite has grown smaller. I can no longer eat as much as I used to and often feel full just after a few bites. Today is one of those days where I wish I had a bigger appetite. The food was so good and I wanted to keep eating. Megumi even prepared the little one his own meal, with chicken, pumpkin and zucchini soup. He even had his own mini chawamushi! The little one loved it and finished up almost everything. I was so happy that Megumi made chawamushi, for after arriving in Korea, that was one Japanese dish I missed and yet couldn’t find. After lunch, the kids were put down for a nap while we chatted. It was amazing to find so many similarities between Jeff and Hwan, it was almost like they had the same unique traits. After the kids woke up, we went out to the garden for a while and had a great time. It was then that we realized the little one could do so many things! He was interested in an umbrella, rode on a scooter naturally and explored the garden. Made me feel like I needed to get him his own umbrella. When it was time to leave, part of me kind of didn’t want to do so. It was so comfortable staying in their home and I wanted to stay longer. Throughout the day, I had experienced the holy spirit’s presence in their home and it was lovely. I have always had this feeling where suddenly peace kind of envelopes the body and gives me a shiver with a tingling sensation. Today I felt it multiple times, so many that I lost count. Definitely God’s presence was in that house and the couple was just radiating light as well. Thankful for them for reaching out. Got home and quickly started to prepare for tonight’s special event. Singapore National Day Event in South Korea! The Ambassador had asked if I could appear in the front segment of the program and I had agreed. It was my honor to do so! I agreed to present Gu Chye Kueh (Chives Dumpling), a local street snack from Singapore. I had learned how to make it from my mom and recently succeeded in making it. Though I was very tired after spending an entire day out, I was excited to participate. Thankfully the little one went to bed early, so we could prepare and enjoy the event with no interruptions. Thank you Singapore Embassy and our Ambassador Mr Eric Teo, who has been extremely active and prepared a lot of programs for us Singaporeans in South Korea and Mongolia. Thank you God, for giving me the opportunity and the energy for today. Definitely a fruitful day and a blessed one.
Day 11 Post Surgery
This morning, the little guy woke up to a new toy. After spending the day at Hwan’s sister, we realized that Ian really loved riding on a mini car. His dad spotted that there was someone giving it away for free on the second hand online market and snapped it up with no second thoughts. He collected it last night after the little one went to bed and cleaned it immediately. The little one was so happy to see it and got on it immediately. We love seeing his bright smile and it was great that this toy will keep him busy for a while. I guess as a boy, he has already shown his preference for cars and what amazed us was he started climbing up on this car almost immediately. He even stood on it hands free. As the daycare was closed today with today being a public holiday, we had the little one at home the whole day. It was quite tough as I was exhausted over the weekend. I was looking forward to resting today, but didn’t realize that it was a holiday! With him being at home the whole day, it means that we had to prepare 3 meals! I also wasn’t sure what came over me, but I have been wanting to cook ever since my last chemo. So even though I just had surgery and was still suffering the effects of 6 rounds of chemotherapy, I have been cooking a lot these days. However, this morning while cutting some vegetables for the little one, the knife slipped and cut my finger. To make it worse, it was my right hand! The cut didn’t seem deep but somehow the blood wouldn’t stop flowing. It took about 1.5 hours before the blood finally clotted, but not before completely filling up a band aid with blood. Hwan got extremely angry with me and forbade me to cook from then on. I slowly forgot about it as the day passed on, but in the evening when taking my shower, I suddenly realized that my right arm was full of rashes! I showed it to Hwan who mentioned that we could ask my doctor tomorrow, since we had an appointment at the hospital. He then left to return a book he had borrowed from a book cafe, while I thought I’d just google “rashes after a cut after lymph nodes removal” and the results scared me. They talked about how even a cut could cause an infection, as the reduced number of lymph nodes meant a big deal to fighting off infections. One of the results even said to go to the emergency if a rash appeared. I immediately called Hwan, who said to go to emergency immediately. He said we would bring the little one (wake him up from his sleep) with us to emergency but I immediately disagreed. The little one would sleep through the night anyway and I would rather call a friend to come and stay. We decided that we would call our neighbor who has no experience with young kids, and get her to come and rest in our home. To be on the safe side, Hwan called my hospital and told them about the situation. Thankfully, they said that if I had no fever, I could wait till tomorrow and not go to emergency in the middle of the night. We decided again that we would wait, since I was feeling okay and the rashes weren’t itchy. To be honest, I didn’t know that removing my lymph nodes was such a big thing. My hospital didn’t tell me about all these things which I have just read, about how I can’t get mosquito bites on that arm, how I can’t get a cut, how I can’t carry heavy stuff or use it too often, if not it will lead to lymphedema. Suddenly it feels a lot worse that not having injections or blood pressure taken on that arm. Still, whenever I read about all these, I follow up with a prayer rejecting all these side effects in Jesus’s name. There is power in the name of Jesus and when I don’t know what to do or what I can do, I always remember to lift it up to Him.
Day 12 Post Surgery
Today would be the start of a week where we have to go to the hospital for 3 days out of 5 weekdays. Tuesday Lymph Node doctor, Wednesday Breast Surgeon, Friday Oncologist. It would have been easier if my hospital was close, but mine was about 1-1.5 hours away from my house. To and fro meant at least half a day is gone. Up till now, I still try to motivate myself and be happier when going to hospital, by searching for good food in the area. Today after the lymph node doctor, I was gonna go for lunch! Doctor warned me about the dangers of lymphedema, and mentioned that I needed to massage and wear a compression sleeve for at least a year. We mentioned the cut and was told I needed to be put on antibiotics to be on the safe side. After the doctor’s visit, we decided to visit my ward mate, who was still at the hospital. We wanted to cheer her up and motivate her to get well soon. We got permission from her doctor to take her out for lunch and off we went! It was her first time out in a month and she was so happy. She wanted to take sushi, so we found a supposedly good restaurant and totally enjoyed our meal. It was a pity that I still couldn’t take sushi, but I had a good bowl of grilled eel with rice. We then left for coffee and ended up having really good dessert. We were so happy that we could have such good food, for the both of us love food a lot and were always looking to yummy food in the hospital. Every time when we pray, we pray that she will be healed soon and recover her strength soon.
Day 13 Post Surgery
This morning, we set off immediately for the hospital after dropping the little one at the daycare. I was a little excited to be honest, as I was gonna meet my hospital roommates again! As the lady opposite me has the same breast surgeon as I did, we were both going to the hospital today. We arranged to meet the young lady who was still staying in the hospital, to have lunch. It was kind of a big day for me as well, since the full results of my pathology would be out. The other lady would also be receiving news, to see if she needed to do chemotherapy based on her MamaPrint result. My surgeon happily told me that I could finally shower! Yay! It has been 2 weeks since I got a full shower on my own. Hwan has been helping me shampoo my hair and scrub my back, since I can’t get to those places on my own. He also told me that I basically got the best result anyone could wish for. He again tried to explain that though some cancer cells were found in me, I was still considered PCR. Both Hwan and I couldn’t understand that part, and tried to just focus on the PCR part. PCR meant that no cancer cells were found after surgery, but since I had some cancer cells still in me, how does that mean a PCR for me? Still, I tried to rejoice. I guess I have to wait till Friday when I meet my oncologist, for him to explain to me. My oncologist spoke great English (despite himself not thinking so) and I could speak to him in English or Korean, which made it a lot easier for me to understand. After my turn, it was the lady’s turn to see our surgeon. Unfortunately for her, she had to start chemo based on the mamaprint result. If she didn’t start chemo, the chances of the tumor metastasizing to other parts of the body were high. I had 6 rounds of neoadjuvant chemo before surgery, then 9 months of Herceptin. This lady was the complete opposite of mine. Surgery, then 3 years passed, before another surgery as there was a new lump in the same place, then a third surgery due to an infection just a few weeks later. And now after those 3 surgeries, she was gonna start adjuvant chemotherapy. I could sense that she was not her usual self when she came out of the room, somewhat in a state of disbelief. I could totally understand where she is at now, probably on a rollercoaster with overwhelming confusing emotions. All I could think of, was to tell her that it would soon be over and to give her some tips to how to handle it. It took her a while before she cheered up a little, thanks to the administrative matters of her insurance, which led to her running up and down the hospital block. It provided a good distraction to her and we went off for lunch at the hospital canteen after. We were all super hungry and I finished off a whole bowl of ginseng chicken. By then, it was time to return to Seoul to pick the little one from daycare.When we got home, there was food waiting for us in the refrigerator! My friend Kellie had delivered food for us while we were at the hospital. As we were both too full from lunch, we saved the food for tomorrow. And just like that, another day went by.
Day 14 Post Surgery
Yay! I finally get to rest today. Rest for a day before hospital visit again tomorrow. However, I had a cake to bake for tomorrow. This was for a special neighbor. Though I still have not regained all my energy, I wanted to try and bake. After all, it may help me to feel better. To my surprise, when I cracked the egg, there were two yolks! And it was the same with the rest of the eggs. It was so amazing! Though I needed more egg whites than egg yolk, it was still quite amazing to see. I started to wonder if the rest of the tray had twin yolks. I also got to heat up the amazing vermicelli Kellie made for me, for breakfast. It was so good I decided I’ll also have it for lunch! I then decided to rest the day away. To be honest, I tried to blog but had to give up halfway as lifting up my hand to put it on the desk was tough after a while. My right arm was also aching. I wonder when I’d be able to lift my right arm? I was running out of clothes, alternating between a large tshirt, one of my long sleeve shirt and one of Hwan’s short sleeve shirt. The weather was getting hotter and it was tough to not scratch my wounds. They were itchy and warm to the touch.
Day 15 Post Surgery
Another day at the hospital. This visit was important to me, as I’ll get to find out about the next part of my treatment. We got to the hospital early to get my blood test done, went for a quick lunch, before going back to the hospital. My oncologist congratulated me for achieving PCR, and I finally got to solve my burning question. I found out that what my surgeon meant was that I still had stage 0 cancer cells in me. These cells were considered DCIS, non-invasive cancer cells. These cells cannot be killed by chemotherapy and can only be removed by surgery. Thankfully my surgeon removed all of this by cutting a bigger area out of my breast, so I didn’t need to have a second surgery. There were two kinds of PCR, one with completely no cancer cells, and one with no invasive cancer cells, but with DCIS. My PCR falls into the second category but was still a great result, considering that I had noticeable growths in my breast and lymph nodes. My oncologist also informed me that my chemo port could be removed and this would be done on Monday. There was no need to restart chemotherapy, but instead all I would need to have is the targeted chemotherapy drug, Herceptin. I would need to do this every 3 weeks but the great news is that this could be done as an outpatient! That means that we would not need to be separated from the little one anymore! Yay! I clapped when I heard this news, and wanted to stand up and dance. The other intern and my doctor clapped with me when I did, as it was the result we were all hoping and praying for. Herceptin was also approved by government insurance, so the cost of treatment would be much lower! However, I got a shock when I asked when I would start Herceptin. My doctor said today. I was completely not prepared for it. He also arranged for me to meet the radiologist next week, as I should start radiotherapy soon. On Monday, I would also take out my chemo port. After my outpatient visit ended, we went up to the chemotherapy day ward to receive my injection. I thought that it would be a quick injection, over in 10 seconds but I became a little suspicious when the nurses showed me to a bed. I was told to lie down while they get the drug. The nurse showed up with an injection, but she said it would last for 5 minutes or more. She grabbed a chair and sat down next to me. She said it would hurt and that I had to relax myself. She then injected me and proceeded to slowly push the drug in. It was quite painful and she had to slow down when I exclaimed that it was hurting me. This was almost like torture, for she had to inject it slowly and the injection pain would last for the duration of the injection. After she took out the needle, the area was red and swollen. It also felt hot to the touch. 1 minute later, it grew even redder and more swollen. I started becoming a little teary, for this was the first one out of 12 sessions. I still had 11 more to go. On the way home, I fell asleep in the car again as I was exhausted. It was as if the drug had taken effect.
When I got home and got on Facebook, I received news that a friend in Singapore had suddenly passed away. Unknown to me, she had breast cancer, went through treatment a few years ago and was declared cancer free. Unfortunately, the cancer came back aggressively and was already in her bones and other parts of the body. She passed away peacefully, while awaiting her chemo session. My heart broke when I heard the news, for I didn’t know. Now that I know, it was hard to imagine what she was going through. I wish I had known so we could cheer each other on. Sisters in pink as we call it, have a special bond formed because of the small c cancer. Because of what we have gone through, we can understand each other better and spur each other on. I wish I was there to cheer her on. Rest in peace my dear friend. I am sorry I didn’t get to talk to you much. Please rest in peace. With her death, she also reminds me of how I can’t take a single moment for granted. Though I am cancer free now, I cannot assume that I always will be. At any moment, the small c can get bigger in our body again and often, it is harder to win it the second round. I pray that I will be able to make the most out of every day and may God grant me more time, to see my little one grow up. My heart aches when I think of how he will be, if anything happens to me.
Day 1 Post Target Chemo 1/12
This morning I woke up slightly later, aching more than usual. It took me a while to remember that I just had my target chemo yesterday, which could be why I am more exhausted today. As I took longer to wake up, Hwan took care of the little one all by himself. It was not an easy job, as he is now more mobile and vocal than before. He wanted our attention more often and wanted to explore the house. As our house isn’t child-proof yet, we couldn’t let him explore on his own. There were too many boxes lying around as well, and the little one was a box chewer. We have found him chewing on cardboard so many times, we didn’t dare to leave him alone with even a book. Many books have had their pages torn or cover page bitten or chewed off. Really thankful for the probiotics which we got for him, as that seems to be keeping him off constipation. Of course there is also the protection prayer, which I pray for the little one and his friends at school. Thankful that despite all the covid cases, there hasn’t been one affecting the daycare. If there was even one case, the daycare would have to close and we would be at a loss as to how to take care of the little one ourselves. I am still not very mobile, with my right arm unable to lift up. It aches when I try to do so and there are bouts of stabbing pain in both my armpits and my right breast. It is as if they are reliving the surgery. These bouts of stabbing pain don’t last very long, thankfully. However, when it happens, it stops me in my tracks and I just freeze. My facial expressions even manage to scare Hwan sometimes. I think I have given him enough shock these few months, am really thankful that he has a strong heart! Also praying for God to bless me with a strong heart as my targeted chemo drug is know to cause damage to the heart. 9 more months of it, I definitely need a strong heart! Since I was exhausted and aching, we decided to spend the whole day at home with the little one. This was gonna be the first time we stay together as a family for more than a month! Really glad that I do not need to do chemo as an inpatient from now.
Day 2 Post Target Chemo 1/12
Tried to blog today but again failed. My arm could still not be lifted high enough to type, it started aching after a while. As the cut on my finger had still not fully healed, I also didn’t dare to make it worse. The rashes on my right arm were still there, despite being on antibiotics for the past few days. Decided to just wait it out and see if it will be gone. It was tough not scratching it as it was sometimes itchy. We got to meet Hwan’s family for a late lunch and the kids got to spend some time together. I was pretty exhausted so I sat while Hwan went around getting the food and taking care of the little one. After our meal we came home and had a mini celebration. Hwan’s sister brought us a cake to celebrate me achieving PCR. It was really nice as I had not been able to taste cakes after chemo started. This time round I could taste some of the cake and that made me really happy.
Right after Hwan’s family left, I received a message from my friend in Singapore, that a mutual friend of ours Titien had passed away. Titien was originally from Indonesia and we had met in Beijing in 2010 when I was there for treatment. We hanged out a lot and walked each other through heartbreaks. It was thanks to this group of girls that I had gotten out of my heartbreak then. We would pray together, go to church together, swim, party, eat and sing together. We had movie nights, rode in a police car, ran in the rain, laughed, cried and danced together. Titien got diagnosed with DIPG, an inoperable brain stem tumor in May 2017. Her husband Tobias and her showed us all what it is like to love like there is no tomorrow. Being her primary caregiver, Tobias did all he could to make her quality of life as high as possible and for that, I am eternally grateful to him. The both of them showed us what it meant by selfless love. My heart broke when I got the news. I immediately thought of the times we spent together in Beijing, when we were both healthy. It was as if yesterday that we were still swimming together. I last met Titien in January 2020 and we were hopeful that Hwan and I could visit them in Germany. With covid, we could not go over even if we wanted to, when her condition worsened. Now that she is home with our heavenly father, I know she is truly happy now. Still, I know we will all miss her deeply and she has left a place where no one can fill. I miss you Titien. Thank you for putting up such a brave fight my friend.
Day 3 Post Target Chemo 1/12
Woke up this morning feeling really excited. Today is the day where they are going to remove my chemo port. I got extremely excited at the idea of having that little round thing removed from me. It has been with me since April, a total of 5 months and yet I have never gotten used to it. Sometimes it would turn red, sometimes it would itch. Still I appreciated the convenience it brought as I didn’t need to have the nurses poking at me each time I did chemo. The procedure didn’t feel too bad, But I was afraid as I was fully awake. I was fully sedated during insertion and so I was not prepared to be awake during removal. I cried while the doctor tugged and pulled at my port. My whole body was literally shaking at the force that was applied. It didn’t hurt at all but I was just afraid. I tried to imagine that Jesus was again in the cubicle with me. Somehow in my brain the image of Jesus hovering behind my doctor appeared again. I knew then that I was in safe hands. After the procedure, I was again told that I couldn’t take a shower. It was tough not being able to shower constantly especially during the pandemic. Once again I cannot use my left hand. It was at this time that I realized I now have a problem of not being able to use both my hands. Right hand due to breast surgery and left hand due to chemo port removal. On the way home the port area started to ache and my left shoulder felt quite sore. I guess tonight I would have to sleep on my back without turning to the side. When we got home we found a big box outside our apartment. Just by looking at the box I knew who had sent it. It was a blessing box. This was an organization that was created by a lady named Dawn Compton. She is a breast cancer survivor and had created this organization to bless ladies that were undergoing breast surgery. Each Box would contain a mastectomy pillow and a shirts with pockets sewn on the inside. These pockets were for drains and each pillow and pocket was sewn by volunteers. I had been waiting for this Box for 2 weeks and it is finally here! Special thanks to Sang for forwarding it to us.
Day 4 Post Target Chemo 1/12
I have been thinking recently about changing the style of the blog. Should I write based on specific themes instead of naming it according to days of the treatment? Please leave your comments below if there’s a style you think is better! After all, it is getting tougher to blog everyday with my joints aching more and more. It hurts to type above all other issues.
This morning woke up with my joints aching badly. It seems like the side effect of Herceptin is now starting to take effect. Herceptin causes insomnia, nausea, joint pain, exhaustion etc. It seems milder than the rest of the medicine I used to take, but still this morning I ached badly. It was as if the top half of my body was too heavy for the bottom half. As such, I found myself in a really grumpy mood. I wasn’t angry or upset, but somehow my speech sounded grumpy. It was as if I had no energy and it was being expressed in my speech. Hwan mentioned that I seem to be pretty grumpy recently and on hindsight, I don’t remember being grumpy. I guess it shows in my speech even when I don’t mean it, I am just too tired to process it nicely. Still, I have to try. I can’t take the effects of chemo out on the people around me. I have to be thankful they are still with me. The joint pain however, had a bigger effect on me than I could imagine. Typing was tougher than I thought, washing dishes were impossible (especially with the cut), even holding the chopsticks was tough. I had a feeling that I’m no help at all, just messing up the situation at home. Feel this way sometimes when I end up making things worse! But yet I can’t imagine just sitting and doing nothing, letting Hwan do all the work. This guy, the amount of things he has to do is a lot. Being a full time caregiver to a 16 month old boy and a cancer patient undergoing treatment isn’t easy. Imagine the tantrums the two of us throw, imagine the different needs, schedules, food. The list never ends.
Day 5 Post Target Chemo 1/12
This morning I woke up with fingers aching like crazy. I couldn’t bend them in the morning when I wake up, it was as if my joints were swollen and throbbing in pain. It felt like arthritis, though I ain’t sure. It was then I realized that when joints ache, basically the whole part of that body can’t be used. I struggled to hold my toothbrush, struggled to flush the toilet bowl, struggled to open the bottle of sauce and struggled to do the dishes. I even struggled to hold my phone. However, I was thankful as today is the day my church friend Charmion is coming over to help! Due to our crazy hospital schedules, we haven’t had time to pack a lot of things people sent and they were all just collecting dust in the corridor. The little one had a lot of clothes sent to him, but as I didn’t have the energy to sort them out, they were all in bags or boxes and he was slowly outgrowing most of his current ones. I had one of my friends who was babysitting him showing me how small his clothes were, compared to her daughter, who is of a smaller size than him. After Charmion came, we uncovered two bags of clothes he could wear for summer! It was a pity as summer is almost over. Still, it’s better late than never. Charmion also brought along a big box from The Blessing Box, a box sent to patients undergoing mastectomy or lumpectomy due to breast cancer. This box was sent from the USA to Sang, who then sent it over with Charmion. I gladly open it and found a big pillow. This box was meant to arrive before my surgery for use then, but it only came now. Still, I am thankful for the pillow felt especially soft and comfortable. After Charmion finished packing, we had to leave for the hospital for a doctor’s appointment. My lymph node doctor. She told me that they removed a little more than half of my lymph nodes on my right arm. As a huge amount was removed, I have a high chance of getting lymphedema. The lymph nodes were there to protect my right arm, and without that huge an amount, my right arm will never be the same again. I had to refrain from carrying heavy stuff, cutting myself (which I had already broken the rule), getting mosquito bites, basically anything that can lead to an infection. Without my lymph nodes, my right arm can’t fight off infections as easily as it used to and a small cut was said to take a long time to heal. She fitted me for a compression sleeve, which I was told to wear daily, especially when out or when I have to do a lot of stuff. She basically just told me to wear it everyday and only take it out before I sleep. The lady fitting me also mentioned that my arms were so skinny, the sleeve may not work very well for the top part of my arm, so I had to be more diligent in my lymph node draining exercise. They scheduled me with a lymph node therapist, who would teach me how to do the massage or draining exercise. In the evening, when we finally got back to Seoul, I was so happy to pick the little one up. It was always a joy to hear him running down the
Day 7 Post Target Chemo 1/12
Today is the first visit to SNUH in Seoul, where I will be receiving my radiotherapy sessions. As radiotherapy has to be done daily for a few weeks, the doctor recommended that I receive it at a hospital closer to home. It would be tough to travel 2 hours to and fro for my daily radiotherapy sessions. We were in high spirits when we went, but sadly, we both left with a heavy heart. My radiotherapist doctor informed us that due to the strike, my sessions would be delayed and wouldn’t start until the end of September. I was shocked and worried, and immediately once we left the consultation room, I broke down in tears. I had wanted to start my radiotherapy sessions asap, so that they would be over by my birthday and I would be able to celebrate with a short trip with my family. However, at this rate, I would only finish a month after my birthday. In addition, I was worried about the recurrence of the tumor while waiting. I wondered if this delay would give the tumor a chance to grow. When we left the hospital, our hearts were so heavy that we didn’t know where to go. So, we decided to drive to Hongdae, to deliver the diaper station to a friend who would be due in October. After that, we went for lunch nearby. When we picked up the little one, we were in for another shock. Somehow, he started having some spots on his body and they looked quite bad. I guess we would need to go to the PD tomorrow. It also means we will have a busy weekend. Finally, I realized that delay of treatment or not, the one who gets the final say isn’t the small c cancer. Christ gets the final say and He is the master healer. My heart felt better at that and I knew that I would be in safe hands regardless of what the young doctors on strike do.
Day 9 Post Target Chemo 1/12
Today is the first time I took a close look at the scars on my body. I was too afraid to look at them and since I couldn’t really shower yet, I didn’t look in the mirror at my bare body. Today I finally looked. And stared. And realized that my body was covered in scars, and whether I like it or not, cancer has left its mark on my body. I never really had any visible scars on my body, but now, I had at least 3. I cried a little in the bathroom while staring at them. Then I decided to snap photos of them. Because whether I like it or not, they are now stuck with me.
Day 12 Post Target Chemo 1/12 (2 Sep 2020)
Received surprises in the mail today. The friend whom we delivered the diaper station to sent us a box of Jeju oranges. Wanda, one of the ladies from the expat group made me curry using the curry sauce I gave her. She sent it over and I ate it immediately. It tasted so good! I had been craving for curry chicken for a long time and now I can finally get to eat it. She came to babysit the little one once and today she just suddenly texted and mentioned that she wanted to send us the curry she made. Thank you Wanda.
With this, the next few weeks will have to be summarized in the next post. I have waited too long for the joint pain to recover, but finally realized that it will take longer than expected. Just writing this post took me more than a week, almost two weeks, with breaks in between. I can barely finish a day’s post without the pain getting real bad. I look forward to slowly updating about the past month in the next post. Thank you for staying with me on this journey, and giving me the courage to go on. Every time I think of how many of you are supporting me, it brings Hwan and me gratefulness and warmth. Thank you.
Connie's Cancer Journey 