Enhertu kicked my butt

Wow, I haven't blogged in over a week. Yeah, Enhertu just beat the shit outta me and I'm still trying to claw my way back to normal. It's been really hard to stay positive this past week so this will likely be a bitter post. But as always, I am happy to be alive and today, well enough to get dressed and head to the coffee place for my custom.  

So last Wednesday, 22 Oct, was my first chemo on new kid Enhertu. It's meant to target the bone mets that I've been developing the last few months which Pacli and nab-Pacli didn't work on. My oncologist mentioned that Enhertu would be more intense, but I don't think she sufficiently prepared me for it. She was more concerned about the high cost, last we spoke. 

I had to call up NCCS multiple times to check whether I was supposed to have a blood test two hours before the chemo like I was used to. The nurse grudgingly called me back and said "no need" without explaining shit. 

Okay takpe. So I rolled up at 1.30pm for my 2.30 appointment, as specified in my HealthBuddy app. (I also bumped into my JC friend Joshua in the bus, which was a pleasant surprise. Also bonus, he's a doctor and I was wearing a cancer-looking beanie for kicks so I didn't have to explain much about why I was alighting at NCCS.) I thought it would be very fun and skip-the-line, not having to do the blood test this time. Nope. I waited until 2.45pm to be called up by the screening counter, where the nurse confirmed that I was feeling well after my hospitalisation, then transferred my queue number to the registration counter. Reg called me up at 3pm. And apologetically told me there'd be an additional 1-hour wait because she could only get me a 4pm chair. Like huh?!

Apparently I wasn't alone, because the same faces I'd seen at 1.30pm were still there with me at 3pm. Including one uncle and his family who were demanding to cancel his appointment because they couldn't guarantee exactly what time he would be called in. He actually angrily ripped the plaster off his blood draw site. I'm with you uncle, in spirit.

Anyway, since I hadn't eaten since 11am, I went downstairs for a chocolate waffle (meh) and came back upstairs to continue waiting. They called me to the chair at 4.05pm and.. left me sitting there, so I fell asleep until they finally started the poking at 4.30pm. 4.30pm! I was rather grumpy because I'd forgotten to bring my book - staring at my phone for over 1 hour straight makes me testy. So I texted Cutes and he joined me later at 6.30pm. 

The one great thing was that the nurse did the quickest and most painless IV cannulation yet. What a genius she is! 

The pharmacist came by to give me three days' worth of dexa for the side effects of nausea and vomiting. Like, compulsory, must eat. And optional metoclopramide for additional nausea. That should have been a warning, but I was just too tired and bored to do any good critical thinking then. He also cautioned me again not to eat day-old food to keep the risk of infection low.

Infusion went fine. We were done at 7.30pm, thinking I was the last one but weirdly, I wasn't. So IDK if there was a cock-up at NCCS that day/week or this is the new system, or entah.

Chemo 'fit featuring this short beanie Cutes bought for $3

On Day 2, I was fine but very tired, so I didn't do any coffee run and stayed home all day until my evening pp with Farizan. Which went well too. On Day 3, I retched while eating breakfast, so I had to throw it out and take additional metoclopramide. I was eating half-portions of food by then because my stomach was always feeling queasy.

Day 4, Saturday, I managed to do pp, lunch, and pilates then promptly crashed until 11am on Sunday. Then Enhertu officially kicked my butt. 

Pilates Princess on Saturday

I didn't actually vomit, but I felt both bloated and poopy all the time. All the time! I was too tired to do anything, I didn't want to eat because consumption of anything just made my stomach feel worse, and nothing tasted good, anyway. My right thumb joint has been swollen since Monday. I did sneak out for Salsation which I somehow survived lol. But only because it's at the next block so it was easy to go home and pengsan afterwards.

I thought the pacli side effects were annoying, but the Enhertu ones just took all meaning out of life for me. 

Love to eat? Can't eat.

Love to dance? Can't dance.

Need to work for a living? Good luck focusing.

Enjoy watching TV? Okay you can still do that, I guess. 

As an example, on Tuesday I ate a danish for breakfast, another for lunch, and half a nasi for dinner. 

Oh, pedas food (with chilli) is now intolerable. I had my favourite Ayam brand chilli tuna level 5 with rice yesterday, and it burned so badly, I had to chase it away with an apple. Wtf is the point of eating if the food is not pedas?

I joined the Enhertu support group on Facebook and it seems like all this shit is normal. It's normal to be fine immediately after the infusion and only have the side effects kick in big-time a few days later. Because Enhertu has a longer half-life or whatever. Many people reported feeling better after getting IV infusions, but okay that's US-centric and I have zero idea how to get that here in Singapore. I know I cannot orally consume enough fluids in my current state though, thanks to the perma bloatedness.

My boss Amanda has been great, allowing me to work from home the entire week and rescheduling my physical meetings. (I'm unable to take actual time off because we have a scheme launching on 3 Nov.) And today is my scheduled mental wellness half day off so here I am!

I have been slowly feeling better since yesterday. But eating is still a chore and I don't dare to go for classes yet. We have a family wedding on Saturday so I hope I survive that.

I found a cluster of new acne on my chest too, so that's fun. How long will it bloody take me to adjust? I guess it's a good thing there's no new Enhertu appointment booked yet. I'm supposed to see my oncologist first mid-Nov (with blood panel) and I guess we'll go from there. 

I still don't have enough spoons to give, though. I owe a few people text replies and even now, I don't feel like doing it. I just wanna hide away in this corner and scroll Reddit forever.

Couple's Haircut by Fatcat today!

Stop calling me Auntie

I got hospitalised last Friday and was discharged on Tuesday. So we're off chemo for two weeks while I chill out. But in summary, I'm fine.

Last Thursday on my chemo day off, I went for pole prac in the morning and Afro Fusion class at night. I had a lil' asthma attack at the end of my group's run - don't worry, I sat down immediately after and took lifesaving puffs of my inhaler.

Polyclinic visit

The next day, I woke up with a nagging pain below my left breast. It sent sharp needles of pain every time I took more than a shallow breath. I thought it was the usual muscle ache from Thursday's dance classes so I just tried to power through the day. At lunchtime I went to take a nap, but it was impossible because of hard it was to breathe properly. Also, lying on my right side hurt like ass. Also also, I was having a sore throat with an almost-fever of 37.1 deg. So I went on Health Buddy and tried to get an appointment at a polyclinic near me. 

It's not really about cost for me when I choose polyclinics over private ones. It's just that after visiting the downstairs clinic over my debilitating back pain a few months ago, their response was to ask me to get an appointment with my oncologist "because it might be cancer-related". My oncologist was bingit and told me to just visit a polyclinic next time because they have more facilities to order an X-ray or whatever tests instead of fobbing me off.

Sadly, I didn't manage to get my favourite polyclinic this time, so I had to go to Bedok Polyclinic. It was my first time there and my first reaction is that the Eunos one is so much cooler. The Bedok one is noisier and I can't explain why without being kecam. But the staff and doctor (that I saw) are equally great. 

I took a Gojek to the clinic but I was already planning to have a burger after my appointment, then take the bus home. Nope. The doctor said it sounded like a gall bladder infection (pain in right abdomen radiating up to the shoulder, low grade fever) so she wrote me a referral letter and told me to go to A&E instead. 

A&E also concurred with the prelim diagnosis, but I couldn't get an immediate slot for a CT scan, so I had to be warded while waiting for the Mon appointment. Meanwhile they pumped me full of antibiotics and didn't let me eat anything in case it worsened the infection.

Anyway, it turned out not to be a gall bladder infection, yay. But I had RSV (some respiratory virus) which explained the sore throat that turned into a phlegmy cough during my time in hospital.

Nurse kept calling me Auntie

It took almost 24 hours from the time I stepped into A&E to get into a ward. Meanwhile I was watching others leave the the observation room like Rachel when she was in labour but not dilated enough. 

Anyway, I ended up in what seems to be the cancer ward. My wardmates were four old aunties and one 40ish lady. And one of the nurses-in-charge kept calling me "auntie". I wanted to deck her. 

In all fairness, I'm sure she didn't really think I was more than 30 years older than her, because she did call me "sister" sometimes. It just seemed to be a force of habit for her, due to the demographic of that ward. But maybe you could drop the salutations?! All the other nurses had no problem not calling me anything at all! They just said things like, "Hello, time to take your BP" and "need to go toilet?" and "pass motion or pass urine?"

Window seat

I was pretty blessed to get a bed beside the window. It had views of the Singhealth tower and the Tg Pagar port and a nice slice of sky. One evening I just sat there watching the sky change colours. 

window seat pic

Aunties vs Lazy Ain

Most of my other wardmates had their curtains drawn closed in my first three days in the ward. Sekali on Tuesday, my last day there, everyone decided to keep their curtains open in the morning. Yeah that's cool but then I realised my next-door neighbour was standing beside her bed doing light exercises. For like an hour. And one auntie beside the door was just standing. The nurse asked, "Auntie, where you want to go?" Auntie said, "Nowhere, I just want to stand here."

I had been lying like an invalid in bed since Friday! And I didn't know any different cos the auntie opposite me did the same thing - eat, pee, sleep, repeat. Properly abashed, I started doing little hamstring stretches in bed. I didn't wanna stand up cos takut the next-door auntie think I copy her.

Cutes visited every evening, which I appreciated because he doesn't stress me out

I am a horrible daughter

My parents decided to barge into the observation room (one by one cos max one visitor) on the morning of Day 2, which immediately distressed me because my dad started sharing more about their home problems, which instantly made me start crying. I am very sorry you have to deal with such problems, but I barely had any sleep the night before and I'm trying my best to breathe without spasms of pain. Could you not treat me as a literal captive audience for your own issues? 

I watched my wardmates get cheery visits from their family members (one uncle was singing at the bedside of my next-door wardmate) and I realised this could never be me, because most of my family of origin stresses me the fuck out. Not saying it's their fault, maybe it's mine. 

New chemo protocol

Anyway, what the CT scan found is that the cancer has spread to other parts of the bones, i.e. further metastasis. The scan from three months ago only saw mets in the hipbone, but it's in other areas now so it means the chemo hasn't been working that well in arresting the spread of the cancer. There were some pathological fractures (i.e. fractures that happened on their own and *not* from my excessive dancing) too. This might also be what was causing my original pain on Friday.

We will be aborting the Paclitaxel/Abraxane regime, which I had two weeks left of, and changing to Enhertu, from 22 Oct.

My oncologist Dr Beh came by on Tuesday to discuss all these with me. She commented, "I see that you've been quite stoic about everything - that's why I told my junior doc yesterday that she could just go ahead to update you on the CT scan results."

Lol. I mean, I did cry a bit when the junior doc (Dr Kezia, cool name) told me the news on Monday, but I already knew it was stage IV before this so.. it's not really a huge difference, is it?

Okay well, the difference is that since we now know I have weak bones, I cannot do vigorous physical activity like afro dance. Or like Quan Bui's choreos. So, yeah, boo but I'm gonna modify whatever I can, as long as I can still move. 

Breast Cancer Awareness photoshoot

This was yesterday and while I was hospitalised, I was afraid I'd have to miss it but alhamdulillah, I made itttt. Jasmine invited me to join the photoshoot and I readily agreed. I didn't expect to be the only one in active treatment and I felt a bit awks at first but it turned out great. 

I kinda got ready for the shoot in a daze, because I'm still recovering from the phlegmy cough and diarrhoea from the hospital antibiotics. We all shed our bottoms for the white shirt part of the shoot, and I was thanking God I hadn't chosen to wear ratty underwear that day.

It was really nice to hear stories from the other BC peeps and also getting to see Rai, Jayne, and Claudia again. And meeting Shar in person after months of IG-only interactions! Watching Jas swing in her hammock while telling her story of how she cried for no reason on so many occasions was surreal.

Lift pic before the magic of makeup

Lots of this is so surreal. I'm so sick of traipising in and out of healthcare institutions and if it takes putting my FOO on an info diet and dancing till I drop to make me feel normal, Imma do that.

Bright spots

We finished our 20 weeks of ballet together last week and I'm very proud of us! I hope to continue bumping into these lovely ladies at the studio.

Argh my elbow could be more turned out

Buzzed it

Refer to headings below!

Buzzed my hair

My pixie cut was starting to look really straggly to me, with an annoying cowlick sticking up at the left back area UGH. So I was super excited to rock up to Salon Nu to see Eugenie on Saturday.

I was on the fence whether to just get a buzz cut or go totally bald. But we realised that I have numerous acne bumps on my head (thanks, hormones) which would be very painful to do a smooth shave over, so we just went with number 2 buzz. Eugenie forced me to try it out myself, so I did, for like two strokes. It was a less smooth process than I expected. 

I'm blessed enough that I started off with really thick hair, so the hair loss doesn't look very apparent to the untrained eye. Even in the current buzzed form, you can see more hair than bald spots. Always Alhamdulillah. It looks even enough that I'm just going out and about without my lovely scarves. Although I just bought two more from Binary Style HAHA sorry not sorry.

Looking like some sorta punk/Sinead O'Connor Clueless person

Girl dinner

Nothing has been tasting good. Well, almost nothing. My favourites like bebek goreng or basic-ass stuff like nasi ayam have been tasting tasteless! Like I just have to choke it down for survival.

I made this basic bruschetta last week which was palatable though, because fresh crusty bread is still good. This was the Hayley ciabatta and two leftover tomatoes. Not exactly fuss-free cos I need to slice and chop, but at least I got to finish most of it. 

Girl dinner: Basic bruschetta

Chemo Day 

Registration

They scheduled me for: 7.30am blood test, 8.30am oncologist appointment, and 11.30am chemo yesterday. Zero chance of getting there by bus or train lol. I got a $30 Grab ride with a guy who was playing Christian pop, fun. Would he smack me if I started playing Tu Pum Pum? 

I was afraid we'd be affected by F1 road closures, but we just got slightly diverted to the wrong side of Fullerton Road, which was pretty cool, and still reached the hospital in the usual 20 minutes. 

Got to the registration kiosks at 7.24am, only to see zero registration staff and a queue of five. The more anxious ones tried to scan their ICs but a seasoned auntie patient said, "Cannot scan, it will only open at 7.30." Kepala hotak ah. Indeed, the staff came out at 7.28am and told us to wait 2 more minutes jokes. So anyway, now we know, all blood test staff start work at 7.30am so don't bother coming earlier.

Cost of meds

I was at the oncologist clinic before 8am and was the first patient there. So we now know they also don't open clinic until a few minutes before 8.30, then. Some PSAs/nurses were gossiping at the back. Wow I miss being frontline sometimes.

My oncologist is busy/blur/IDK so I had to remind her that I'm on Abraxane now because I had two allergic reactions to them. "I couldn't breathe and my blood pressure dropped to 80 or 70.."

"Oh that was you ah? I remember the case but didn't realise it was you."

Baiklah, thanks.

Then she went, "But I'm a bit worried about the cost.. Oh they didn't tell you about it? I told them to tell you."

Great. No, they only spoke to me for two minutes about the side effects which are the exact same as Pacli. Thanks to r/breastcancer for keeping me aware of the higher cost, though.

It turns out to be ~$1,800 for a 3-week cycle of weekly infusions. I'm expected to pay $3,600, not sure if fully or partially out of pocket. She tried to check for other subsidies, notably the Medical Assistance Fund (MAF), but I've means-tested out of it cos the threshold is per capita monthly income of $7k, based on gross income. Even if I lived alone, I couldn't get MAF subs.

I'm sure I can swallow the cost but I'm just gonna ask to see the financial counsellor at my next appointment. This medical admin shit is truly the hardest part, sometimes.

Anyway, if you caught my bitching about why they start you on Pacli first despite the higher chance of allergic reaction, this is the two thousand dollar reason.

Absentminded oncologist and understandably irritated nurse

I was sent to wait outside as usual for the nurse to prep the forms and pass them over. She was quite crabby as I walked out of the room, so I was afraid I'd offended her. I was also starting to feel indignant and considering submitting a feedback about her - that's just how my anxious brain works.

But when she came out and explained that my doctor had accidentally cancelled the post-chemo regimen bone scan and CT scan, I realised she was actually irritated at the doc HAHA kesian. To the nurse's credit, she managed to get them rebooked for the same week, although not the same dates. 

Bronch

I went to Dearborn for my usual yummy granola and chilli toast and refreshing yuzu drink. I just love sitting there munching and watching the fowl and the people.

Pleasant Phesgo jab

During the actual chemo, the nurse somehow found a sweet spot on my thigh for my dreaded once-per-cycle Phesgo injection! It did not hurt going in and only stung every 30 seconds of the five-minute process, instead of every millisecond like the previous rounds!

We discussed it and she said maybe she managed to find the part of the thigh with more fat. So, fun learning point to all chemo nurses out there! She actually measured (with her hands) the midpoint between my hip crease and my knee a few times before poking it there. There's a good guideline for you. I remember the first nurse poked it about a palm's length above my knee and that hurt like sin.

What's next after Abraxas?

I have two more sessions of Abraxas to go. In the final week of Abraxas, I also have my CT scan and bone scan, on separate days cos apparently the bone scan solution to be injected into my bloodstream will interact with the CT scan otherwise. 

Then the following week, my doctor booked me a new chemo appointment. It won't be Abraxas or Phesgo anymore but "two chemo drugs" but she didn't mention what and I just get tired of interrogating her sometimes. My chemo nurse shared that it might be AC, which I've seen mentioned frequently on r/bc and I'll read up more later.

Isn't it kinda crazy? You're sick with a potentially deadly condition, you still have to juggle it with adulting shit like work and chores, then you need to keep your brain alert during medical appointments so you can retain and critically examine all this new info you've been given. When can you just sit and relax? Probably when you mampos.

Medical folder? No!  Medical foldeD.

Cutes has been giving me grief for folding up my medical forms and stuffing them into my handbag. He told me to get a folder for them instead. But who wants to cramp their style and ease of travel by incorporating a fussy folder on top of everything? No thanks, the current handsfree handbag life works for me.

Test order forms folded in my bag

Chemo 'fit 

Not to masuk bakul angkat sendiri (translated from Malay: enter a basket and carry it yourself aka praise myself), but my 'fits are consistently fresh the longer I'm on this chemo journey! I'm sure someday I'll be too tired to put in the effort but for now, I enjoy traipsing around and looking back at my photos. And I feel extra high fashun in my bald head.

BTV top and new Whimsigirl Sculptor Linen pants under a Mother Dough cap. Also my favourite monster face earrings which one nurse complimented.

I'm at Cata Coffee now and the very nice Chinese lady came to say hi and exchange a few words as she noticed I haven't been here in a while. How kind, excuse me while I cry.