"I don't have the best news..."

My doctor came into the room this morning and shared with me that my irregular heart beats returned at midnight. My second ablation procedure wasn't successful after all.

I felt sad, frustrated, fearful, nervous... It was the second time for the procedure, a re-do; it was supposed to be a success. Was this second ablation for nothing?

Prof Tan sat down by my bedside and took time to explain everything clearly, going through the different considerations he had to take.

1. Difficulty of the procedure

- Extra pathways (at birth) can be found at different parts of the heart, and mine happens to be at a relatively tricky position

- What makes it even harder is that my heart continues to beat/move as the doctor tries to aim the catheter at the extra pathway; the doctor has to make sure that the powered catheter doesn't hit the good parts of the heart (which can cause even more riskier complications)

2. Minimal level of risk

- Taking into account the above difficulties, Prof Tan did his best to damage my extra pathway at the least level of risk

- He could have powered the catheters at a higher amount of watts, but the trade-off was that he'll be doing it at higher risks (eg burning a hole in my heart), which would have dire consequences in terms of complications... And Prof Tan was not willing to do that "to a young heart"

3. Two options, moving forward

a) Going for a third ablation- which he advised against, due to the above reasons

b) Continue with my medicine, and hopefully with given time, the function of my heart will improve. Another plus point to consider is that the damages from the two ablations would have gotten rid of the palpitations completely (an earlier problem which I had during chemotherapy)

---

In essence, the ablation was to improve my lower than average function of the heart (measured by LVEF). This could have been caused by my Wolffe-Parkinson-White syndrome, and/or the negative impacts of chemotherapy. We went ahead with the procedure, thinking it would at least eliminate one of the reasons for my low heart function.

But my extra pathway has been so stubborn- even with two ablation procedures, it just did not budge (and even if it did, it was only for a few hours). With it being so stubborn, as well as the addition of the increased risks in getting it ablated the third time... we decided against it. We would be patient, and I would continue to take my medicine and we'll see how it goes.

Prof Tan said that he had a patient who took 2 years to increase her heart function (and hers was really bad, at around 10%; they even considered doing a heart transplant). Mine's hovering around 40-45%, while the normal range is from 50-60%. It's just a bit more to go!

It is not the best news after everything, but God is still good. With no more palpitations, and with more time- I have faith that my heart will be strong again.

Post-Treatment Thoughts

Last Friday 20th March 2015, after 6 cycles of chemotherapy and 17 sessions of radiotherapy, I'm finally done with treatment!!! WOOHOOO. The road to recovery the past 6 months has been tough, but God has gifted me with so many graces to travel this road. Thank you all for soldiering on with me — the visits, prayers, well wishes, kind words of encouragement... they mean a lot! 

Can't believe these 6 months have gone on by so quickly. Not complaining though, just feeling very blessed. This journey has taught me many things, and I thought it'll be nice to share with you guys.

Health is wealth

Growing up, I was always involved in sports — netball, in particular. I've been playing netball competitively, representing my schools since I was 13. In primary school, I was a lazy bum. But a smart one, because I found out that I could list 'piano' as my CCA teehee... so I didn't have to go for any CCA practices etc and could spend more time watching tv at home. But I still liked running, so I was a runner for my House and participated during Sports Day every year. I remember winning my first gold medal in P3 at my first event, and actually slept with it around my neck because I refused to take it off (lol what was I thinking). 

I'm bringing all these up to show that I wasn't the most unhealthy person — yes, I eat McDonalds occasionally (side note: think I'm never gonna have macs again crai), but I exercised regularly too! Especially during netball days, no way was I unfit and unhealthy then. Ok, I admit that I stopped exercising regularly when I graduated, but at least I was still loving my fruits and vegetables?

Truth is, no one expected me to get cancer. Not now, not when I'm 22 and at the start of my career. 

It is so important to treat your body right. I can't emphasize how important it is to eat right — I'm not saying to convert to a vegetarian/stop eating sugar etc but moderation is definitely key. Being young doesn't mean the body is insusceptible to illnesses! Cancer doesn't only happen to old people. Apparently my kind of lymphoma happens mostly in young women... who would have known?! 

Like me, many young people take their health for granted. Not because we don't care... I guess it just doesn't strike us? We assume that our youth equates to health, and then it just disappears in our list of priorities. But we forget that without health, we can neither pursue our paper chase for qualifications, nor climb up that esteemed career ladder. 

"Smile, and you'd have won half the battle"

I am very touched by the comments which say that I've been strong, brave and positive... I really appreciate them — thank you for taking time to write to me, and for keeping me in your prayers. Honestly, what keeps me going is the faith that with God's grace, I will completely recover. Also, I draw my strength from the people around me (especially my family, and my close friends). I wouldn't have done it without them. They have supported me through everything. My parents would visit me twice a day when I was warded, giving me home-cooked lunch and dinner lovingly made by my grandma so that I didn't need to eat hospital meals. I am so blessed to be at the receiving end of such great love.

During my hospital stays, I've always had wonderful roomies (haha) to accompany me. Even though they may be three to four times my age, I enjoyed all our conversations. I believe that God placed these individuals there with a purpose — to keep me company, and make me laugh and be touched by their stories. During the period when I was just diagnosed, one elderly lady in the next bed asked me why I was there, and I started tearing when I shared my story. She then said something which resonated in me until today — "Girl ah... smile, and you'd have won half the battle". 

You can face anything, just do it afraid

I thought long and hard before posting up the photo of me and my baby-hair head. I decided to go ahead with it, because I wanted to show that there is nothing wrong with having less hair. Yes, I cried so much when I shaved it all off. But then I remembered that I wasn't alone. Thousands of other women have shaved their heads to fight hair loss, a distressing side-effect of chemotherapy. I can only wish that I am brave enough to leave out the wig when I'm out. 

I've also read about some women in the US who try to prevent hair loss by using ice caps during chemotherapy. Apparently by reducing blood flow to the scalp, this limits chemotherapy exposure to hair follicles. The thing is, it hurts like mad?!! Imagine having a block of ice on your head 24/7. But by doing this, there is also a concern that this reduces the effectiveness of treatment in that area. If you ask me to choose, I'd rather have my head shaved than all the other nasty side-effects of chemotherapy like vomiting. 

Anyway, I also learnt about the importance of eyebrows and eyelashes... They are SO important to a face's structure omg. The photo that I posted above is considered the 'nicer' version. So here's me, with a few tiny strands of eyebrows, and zero eyelashes. And a shiny bald head. (At least the flush from the drugs gave my face abit of colour haha)

I'll be recuperating at home for the next couple of weeks. I'll update whenever I can! Today, Singapore lost our founding father Mr Lee Kuan Yew. He was a great man who built Singapore, a place I proudly call Home. May he always be remembered. Rest in peace!

Link between my low LVEF and Radiation

Yesterday, I saw Dr Yeoh (radiation oncology) with my mom before I went for my radiotherapy session. Dr Eric (cardiology) was concerned about my weakened heart function with radiotherapy (read more about my low LVEF in my previous post), but Dr Yeoh cleared the air during the consultation.

1. Generally based on long-term research, lymphoma and breast cancer patients will suffer from cardiac problems (if any) only 5-10 years after radiotherapy.

2. Today's technology is so advanced, radiation oncologists are able to pinpoint the area they're shooting radiation at, and calculate the dosage of radiation that a vital organ might be getting. For my case, my mass is in my chest, but Dr Yeoh reassures us that the heart and lungs are only being affected minimally. Some statistics to give you a bigger picture:

- The safety limit which the heart receives radiation is at 10%; and at this level, 1% of patients got cardiac problems. 

- My heart is receiving radiation of 0.16%... so the risk of me getting cardiac problems due to radiation is really verrryyyy low. 

3. Dr Yeoh said that even before I started on radiotherapy, when he was checking the 3D images, I already had a huge heart. 

Me: *chuckles* "What do you mean by a huge heart?"

Dr Yeoh: Imagine working your arms with dumbbells every day, your muscles will grow right? Likewise, a heart is a muscle — it means that your heart has been working very hard with your Wolff Parkinson White (my underlying heart problem), and of course, lymphoma.

---

Dr Yeoh then gave a call to Dr Eric, and they had a 15 min discussion over the phone. They agreed that given that my echo scan was done after 3 radiation sessions, my low LVEF should be the cummulative effect of my WPW, lymphoma and chemotherapy. 

On a separate note, I messaged Dr Eric separately and told him about my side effects after taking the new medication. He told me to cut down the dosage by half, so hopefully everything will be better from now!

Another Bump in the Road

One Direction, On The Road Again Tour SG

I went for the One Direction concert on Wednesday!! It was my first time at the new National Stadium, and it was huge?! There were 33,000 people but there were still many empty seats behind the stage. Pretty impressed with the good crowd control — I could even find seats on the MRT on the way back. Aaaand... it was my first time taking public transport in 6 months haha I was pretty nervous and apprehensive but I think taking the MRT back would be even faster than finding a cab at the stadium.

Yesterday (13th March 2015) marks the 6th month mark since I got diagnosed. Happy 6th monthsary? Hahaha. Has it been half a year already?!

I had an appointment with my heart doctor, Dr Eric, yesterday as well. Not so good news. The recent echo scan that I went for showed that there's a fall in my LVEF. I have done 3 echo scans — it went from 50%, to 48%, and most recently, 36%. Here's more info, from here:

With each heartbeat, the heart contracts (or squeezes) and relaxes. Every contraction pushes blood out of the two pumping chambers (ventricles). When when heart relaxes, the ventricles refill with blood. The ejection fraction (EF) refers to the amount, or percentage, of blood that is pumped (or ejected) out of the ventricles with each contraction. This percentage, or EF number, helps your health care provider determine if you have heart failure or other types of heart disease. 

A normal heart pumps just over half the heart's volume of blood with each beat – a normal EF is 50 to 75 percent. 

A low EF number is an early sign of heart failure. This is a condition where the heart does not pump enough blood to the rest of the body. With treatment, many people live well with heart failure. 

So I've been put on two medications — Enalapril (5mg bd), and Bisoprolol (2.5mg bd). He says that with early treatment, there's a high chance of recovery. These two will decrease my blood pressure, and I have already felt some side effects last night. When I got up from watching tv, I got a bit dizzy and then my heart went into crazy racing mode (150 beats/min) for 5 minutes. 

Dr Eric says that the decreased function of my heart is due to the combination of chemotherapy and radiation. He even tried to call my cancer doctors to see if my radiation can be stopped as it's evidently weakening my heart. But... they didn't answer their calls sigh. Hopefully my body will be able to tolerate the medications! Will be doing another scan in the middle of April to see if they work.

I'm left with the last 5 sessions of radiotherapy! Lezzgo!

Treatment #2: Radiotherapy?

Supposed to post this earlier but I got lazy hahaha zzz now I have a backlog of updates:

Thursday, 29th January 2015

I had an appointment with Dr Lim to discuss the results of my PET scan done a few days before. This scan was done after 6 chemotherapy sessions, and was supposed to check on any signs of mass/cancer activity left in my body.

My scan showed that the mass has decreased — what's left measures 4.7 x 2.8cm (compared to the previous scan, 6.2 x 4.2cm). But there's a concern over the activity part, because it INCREASED from SUV3.6 to 7.0. This can mean two things:

1. The PET scan is very sensitive, and it may pick up activity from scarred tissue that will slowly go down given more time

2. There's still some disease left which means that radiotherapy is needed to zap it off

They've arranged for another PET scan after CNY on the 23rd Feb to try to make sense of things. But for now, my doctor is more keen on radiotherapy to get rid of the cancer totally. He says he rather 'overtreat' than miss out on something which can be worse.

But on the brighter side of things... I'm off my (blood thinner) injections and PICC line!!!!!! Major hallelujah! I have been injecting myself twice a day for the last 4 months my stomach got pretty badly bruised. I got used to the PICC line but yes, really really glad to get these two out of the way.

---

Wednesday, 4th February 2015

Dr Lim discussed my case with other specialists (radiologists, radiation oncologists...) last Friday and he helped to arrange for me to meet Dr Yeoh, a senior consultant in radiation oncology today. I think the consultation was around an hour?! He explained radiotherapy thoroughly — the history, side-effects, my case... 

Honestly I wasn't keen on radiotherapy AT ALL. (HELLO... I WON'T SIGN UP FOR ANOTHER CANCER TO HAPPEN IN THE FUTURE!) I've always thought it was a really bad type of treatment (must be all the horrible stories of old technology radiotherapy). Ok la, then again, chemotherapy is equally horrible!!!! Scientists should find even better cures for cancers ASAP. But I can understand where the doctors are coming from, pros vs cons. Like what Dr Yeoh said, there can only be so much scans I can do. Plus, most of the time, he says that patients who keep doing scans, the results are hot-cold-hot-hotter... In other words, time is of the essence. We wouldn't want to wait and only find out one day that the cancer has deteriorated. *touch wood*

Because I started off with a HUGE tumour (12.6 by 6.5cm), chemotherapy can only do so much to shrink it. Most lymphoma patients will still have abit of cancer cells left because of the tendency that our tumours are naturally larger in the first place. Dr Yeoh described chemotherapy as a systematic type of treatment (i.e. it goes through the whole body), while radiotherapy is localized. 

With modern technology, radiologists are able to blast the radiation at precise locations that only hit the affected cancer cells. But every treatment comes with side-effects and risks right? Since my mass is at the chest area...

Short-term side effects:

- Redness of the skin ("You mean like sunburn?" "No, for sunburn there's peeling. But for this... It's like spending 2 hours walking at the beach")

- Dry cough

- Fatigue

Long-term side effects (20 years down the road):

- Secondary cancers: Skin, bone, lung, breast

- Heart and lung problems 

Dr Yeoh assured us that these secondary cancers only occur to a reallyyyyy small percentage of people. As we grow older, risk of cancer goes up anyway. I ran into Dr Lim at the entrance, so nice of him to say hi and check on me. After balancing the pros and cons, the doctors agree that getting rid of my current tumour entirely is the safest option, and an option that will give me a peace of mind, rather than playing the waiting game.

And since there's a pre-treatment session for radiotherapy for the doctors to decide on how they are going to carry out the treatment (e.g. how to localize the radiation such that it has minimum effect on my vital organs)... I have an appointment booked next week on the 11th. The real treatment begins on 29th Feb (if I decide to go through with it, after my PET scan on the 23rd Feb). It will last for 3 weeks every day (????!!!!), and 15 minutes each time. 

Gah.... why can't SGH be in the east?!

Dealing with Hair Loss

(L-R) Bob, Pixie, Just before going to the salon, Shaving halfway (couldn't resist taking a photo teehee I look so badass)

I have been keeping this blog post on hold because it means so much to me. Since my chemotherapy sessions have come to an end, I thought it would be a good time to share it here — not for the purpose for others, but rather, more for my myself to remember.

I shaved off my hair on 20th October 2014 after my second chemotherapy. In the mornings, my pillow would have collected strands of hair, and I will continue shedding hair throughout the day around the house. Honestly, it was getting frustrating, and emotionally draining whenever my hair dropped in clumps (especially when I showered!). 

I remember it being either the first or second day that I was back home after my second cycle... It popped up while I was talking to my mom, and it was rather impromptu I'd must say. I took half an hour to decide if it was the day to shave — I stared at the mirror, prayed for strength, and thought, sooner or later right?

The next important question: Which salon should I go to? 

I didn’t want to trouble my hair stylist to come down to my place (like how he came to SGH to cut my bob, and for my pixie style I actually went do to the salon at Siglap), and since I thought shaving didn’t need much skill; I did a quick google search and settled for the most random salon on the second floor at Elias Mall near home.

My mom accompanied me, and when I walked into the salon… “I would like to shave my hair, please”. The hairdresser asked softly, “all of it?” I nodded, and there weren’t any more questions.

Army boys have different ‘levels’ of shaving, so I thought this was the best thing to describe how short I wanted my hair to be. “Number 4!” … It turned out messy, and worse, patchy. Unfortunately, hair loss from chemotherapy is horribly uneven. For me, most of my hair loss is at the crown of my head, compared to the back. So from Number 4, it became Number 1, and then it just became 0 (i.e. the shortest the shaver could go).

—

I’ve always thought that those who shaved for Hair for Hope were really brave. I even remember having this conversation with a group of friends jokingly: “Maybe if you pay me $10,000 I’d go for it. Actually maybe $100,000??” 

Well, the joke’s on me now. I don’t know how to put this nicely… I guess for young males with shaved heads, people go, “oh, army boy”. For females, if it’s not during Hair for Hope, first reactions would usually be, “oh no, she has cancer”. It's like no matter how brave you are, it's just so damn hard to walk along the streets bald. 

I think my worst fear is for a kid to see me and to ask his/her mom, “Mummy, why doesn’t she have hair?” WAH I think I’ll cry. Thankfully, my mom thought well ahead, and brought me to buy my wig right after my first chemotherapy when I wasn’t shedding as much hair yet. True story: We were in the lift heading to the car park, when this boy (carried by his mom) PULLED MY WIG!!!!!! Um… Lucky it didn’t drop? The mom kept apologising, and I’m pretty sure she didn’t know it was a wig, but still?! Could the boy really recognise the fake hair? (Actually my wig is made of real hair haha but ok, not the point!)

—

Hair loss hasn’t been limited to my head — I’ve lost ALL my eyebrows and eyelashes too. I used to have longer than average eyelashes so I was quite sad when my last old eyelash dropped during my last chemotherapy (I really had the hope that it'll be the last one standing haha). But thank God they've been growing out pretty quickly such that it’s not fully bare at once. To think of it positively... at least it’s like a full body IPL? Hahaha

I’ve gotten used to my new (hair)style the past few months. It is definitely breezier and makes showering a whole lot easier. I have been reading Joyce Meyer’s Living Courageously — “You can face anything, just do it afraid”. I know I wouldn’t be able to walk around a mall without a wig (sorry this one really too extreme), but I thought I took a baby step forward when I walked around the hospital on two occasions au naturel. 

I have been refusing to wear a beanie cuz I think I look very sickly and weak, and I have horrible scarf tying skills… So the wig has been the best option for me. Of course, there are still a few days when I scroll through Instagram and feel sad when other girls caption ‘bad hair day’ when they still look gorgeous anyway. 

—

To be honest, it didn’t come easy. I curled up on my bed and cried like a baby when my first clump of hair came off in the shower. Hair loss has taught me many things — I know it may seem like a trivial side effect of chemotherapy because ‘hair can always grow back’, but I’m glad, and proud, that with God’s grace, I have learnt to slowly overcome this.

Yet having said all these, I’m still a girl, so… hair quickly grow back please!!!

Chemotherapy Round 3

I'm almost midway through!! In terms of both this cycle, and for all 6 cycles as well. I think my body is getting more used to the chemotherapy drugs because I have been coping pretty well. 

Plus, even more great news- Dr Eric (my cardiologist) came by the other day and said that my ECG this week didn't show anymore irregular heartbeats! Previously one day after the surgery it came back, but apparently that's because the heart is in the "healing process". Hopefully these irregular heartbeats will be gone forever!! But he mentioned that they'll only be able to confirm it after a few months when everything stabilizes. 

On a sidenote, the oncology team who visited me this morning told me that there's another girl (in her late 20s) who just got admitted in the next room with a similar condition as me. She just came over, and I was glad to be able to share my experiences. I hope I managed to make her feel more at ease - it's always comforting to know that you're not alone... I pray that she'll have a smooth recovery too!

Post-chemotherapy Round 2

I was discharged on 18th Oct, so I'll be resting up at home for the next 3 weeks. The second chemotherapy went by smoothly — I was amazed at how 5 days went by so quickly! During this cycle they increased the dosage, and this will continue as long as my blood counts remain good enough. There were no nausea side effects this time, just fatigue. All I do is sleep and eat, I wasn't even allowed to walk to the toilet! Total nua mode. The nurses were really kind, one even bought me a madeline from flor patisserie :')

Remember how I was saying that the PICC line that was inserted before this cycle was so troublesome...? Well, it will remain inserted till the end of ALL my 6 chemotherapy cycles. My parents were taught how to clean the area once a week, it'll have to be super clean, dry and germ-free. Looks like I'll be in long-sleeved loose cardis when I go out for the next few months!

The past couple of days I've been slightly feverish (37.7-37.8 deg), although I feel not serious enough to go back to the hospital. Actually had high palpitations today for 5 minutes too sigh. Anyway, the doctors and nurses once cautioned that once there's a fever, I'd have to return to hospital — "a fever to others may just be part of a passing flu, but for you... it can be life-threatening!" But then again, body temperatures post-chemo are known to be abit higher too. I promise that I'm not acting tough or anything ah... but really, I think it's important to know your own body. I still feel the same as with a lower body temperature, so all's good!

Also, instead of the 7-day booster jabs that I needed to inject myself post-chemo, they gave me a 1-day one this time around! Apparently previous blood counts have shown that my body is pretty strong... so this one time jab actually has a few "layers" - it will self-activate every day without me injecting myself. Hurray!

Side-effects of Chemotherapy

I was hoping to hold on to this post until just before my second cycle of chemotherapy on 13th Oct 2014. This week marks the second week after my first cycle. So far, I have been very lucky that the side effects I've experienced is considered mild and very manageable. During the first cycle, I felt fatigue and abit of nausea (no vomitting though)— however, these quickly went away within 1-2 days after treatment ended. At home, my appetite has been great! And for that, I am very grateful because this meant that I could try my best to consume as much nutrients and energy as possible to gear my body up again for chemotherapy round 2! 

However, my greatest fear is not any pain/discomfort... but hair loss. Ever since the doctor mentioned chemotherapy, I've been trying to prepare for it mentally. It is inevitable, non-life threatening, and that it is temporary because hair will grow again. BUT IT IS SO HARD :'( Last night, while in the shower, I was combing through my hair with my fingers like I always do when I put conditioner. 

And then it happened... One clump of hair in my right palm. I couldn't help it, I started crying.

I didn't want it to happen so fast. I googled and it said that hair loss would usually happen 1-3 weeks after chemotherapy ends — so it is normal that I'm losing hair now. Actually for the past few days, my scalp has been slightly itchy, I read that it is a sign of hair loss already.

Well, hair loss can range from thinning of the hair to full hair loss. Cross fingers that it is the former? Hair loss is gradual though,  so it is assuring that I won't wake up and find that I am bald.

It will definitely take some time to overcome this barrier, but I will try my best!

---

About chemotherapy (from here):
Chemotherapy targets cells that are actively growing and dividing. Although this is a defining characteristic of cancerous cells, it is also a feature of some actively growing normal cells, such as cells in the blood, mouth, intestines, and hair. The types and intensity of these side effects vary from person to person and depend on the type and location of cancer, the treatment dose, and the person's overall health.

There are other side effects such as: sores in the mouth/throat, diarrhea, vomitting, constipation, blood disorders, nervous system effects (e.g. weakness/numbness in the hands and feet, loss of balance, loss of balance...), changes in thinking/memory, appetite loss.