Day -13
As in 13 days until the day of my stem cell transplant/bone marrow transplant (STC/BMT) for Acute Myeloid Leukaemia.
Admission, prep, deposit.
Prior to being admitted today, I had a scare that I wouldn’t be able to pay the 500,000 HKD deposit for this transplant. Once again, the people around me pulled through and lent me what I needed. What a boost of love and faith which fuels my drive to fight, to live.
A spinal tap (lumbar puncture) was called for to rule out leukaemia in spinal fluid.
Andrew and I had a sanitisation party. Have you ever wiped down your charging cables? Especially the laptop cables? Disgusting.
There were quite a number of things that led to me skipping hospital scheduled meals.
A little unplanned fasting after the spinal tap and before the Hickman line surgery the next day as I tried to settle in my concave 3ft wide bed.
Day -12
Warm heated blankets laid upon me as I laid shivering on the cold operating table. Probably the only comforting memory I’ll have from being in the hospital.
Nervous level prior to the procedure would be described as “cool as a cucumber” since I’ve had 2 catheters in before, which is also a direct quote from the physician when I had my abortion procedure at 15.
But as soon as this surgeon started, I was fighting to stay composed throughout.
“Stop moving the lights”
“I can’t see it”
“You’re not doing it right”
…were among the things I endured listening to as the surgeon and juniors surrounded my exposed upper right pec and shoulder.
Oh, and is that an arm or a long ass heavy tool laying on the cloth directly above my throat?
I let out a throaty murmur several times and it moved a little.
IT WAS A BLOODY ARM ON MY THROAT?! DAFUQ?!
A forgetful one, as it found its way back. Tapping into my fear of voicing up and contributing to the commotion, I remained silent.
A few tears might have escaped as I prayed hard that the surgeon must have his style of good work and the commotion was not a fuck up.
“Finally, done! Oh, she fell asleep! Haha” said the surgeon when it was over.
“I’m awake!” I beckoned. But what I really wanted to say was “FUCK YOU”, still choking back the anxiety.
They wheeled me into the operation recovery room for observation. It was empty except for one other bed containing a little figure. Soon enough, the figure no older than a year stirred and started crying.
Oh, little man. You poor little thing. How exhausting this must be for him, constantly woken up with his comforting parents with tubes and needles in him.
And so, we wept in our own beds.
Day -11
I woke feeling hungry. Didn’t eat much since I had to fast prior to surgery and lay flat after.
Blood drawn in the morning for cortisol testing, something was injected but I forgot to ask what it was.
All I could think of was how to sneak my own food in.
It’s been a battle to get my own food in the ward before chemo starts since the food restrictions are strictest when chemo starts and blood count plummets. The rule is so patients do not risk getting sick from improper food handling and exposure to food items harbouring bacteria growth like nuts, seeds, bread, crackers and such. Homecooked food and outside food are not monitored and the hospital won’t be able to take responsibility for any food-related problems so they just don’t allow it. Upon trading info with my AML penpals in California and Singapore though, I learn that it’s just QMH being strict AF. I wonder what had happened in the past?
Since I’ve been careful about my fish and veggie source, as well as the occasional chicken and supplementation, I feel like this tiny little autonomy over my nutrition is being taken away. I know, that sounds a lil’ melodramatic but it’s the one thing I feel like I can help myself on.
Aite, snappin’ out of it. It’s just annoying trying to un-mind it. A weird battle between not eating anything at all or just suck it up and convince my trained brain that spaghetti will give me cancer-fighting fuel. Of course, I’m lying to myself. Tried talking to my oncologist, two nurses and the dietitian.
Team Med 4 — Me 0.
I am recommended to stock up on instant noodles and canned food. Oh hey, gummy candy is allowed though. Mindfuck.
Then, it’s like my prayers have been answered.
I felt so ridiculous hiding in my hospital bathroom mixing protein powder and hemp seeds in a tiny bottle over the toilet since my room has a CCTV. As I finished chugging it down, a nurse came in and asked if I would like to take home leave for 2 nights. I had no other procedures until Sunday morning after all. Some chocolate liquid escaped my mouth as I couldn’t answer YES NOW quick enough. First thing I cooked at home was a whole bunch of veggies to go with my barramundi.
The simple bliss.
Day -10
Having slept on a flat bed that’s wider than 3ft felt amazing. Eggs and kale tasted delicious.
Started the day with a long distance call and a Spanish lesson helped me forget momentarily that I’m supposed to be in the hospital. Woke with a little cough but relieved it ain’t phlegmy. However, ain’t gonna risk being in contact with other people outside, in fear of triggering something that might fuck up transplant process. Ain’t just about me anymore, we gotta think about the donor and his time, and about the other patients who could have booked in their transplant in my spot.
Enjoyed some real talk with Andrew, still so happy he’s here for me despite the stress of work and living conditions. Caught a lovely movie date with Vee as we watched Netflix 10 floors apart. There are always ways to “hang out” while practicing caution.
Today, I read another news of death.
Third news in a week. Last Thanksgiving Sunday, I had received news of 2 friends losing a wife and a father on the same day. Marian had battled brain cancer since early this year while Aussie’s dad received the shocking news of terminal cancer this fall. As I read the message from a mutual friend about Marian, I was sitting amongst my friends and family with a full heart and belly from dinner. Something changed in me – I fought hard to appear as if nothing had happened, being wary about bringing the mood down at our gathering. The next day, there was hushed news of Aussie’s dad.
Today, it was the partner of a fellow handstand mate. He, who had also reached out to me with support, put his life on hold to care for his partner pursuing breast cancer treatment out of Hong Kong. She took her last breath from cardiac complications.
Death by cancer felt so close but I know I’m only affected as much as I let it. I’m still here, hearing lost loves and imagining the pain of it. I was at loss for words and felt helpless in offering comfort. I didn’t know what to say to the ones left behind. But something is better than nothing, being uncomfortable is nothing compared to those hurting.
Day -9
Back to the hospital today.
Had a big ass breakfast before hospital at 830 so I won’t be fussed about food later today. Also, I think if I haven’t been as aware of nutrition and training prior to diagnosis, I reckon my body would be a hell lot weaker fighting this
Took a bunch of meds. The one that is anti-epileptic made me feel like I’m high on something without the good buzz.
Progesterone to prevent menstruation but since IUD stopped mine for years, I’m good.
How do I truly feel? READY.
Ready to finally have this significant gamble where the stakes are further health complications, yet in exchange for a higher chance of living.
What do I mean by gamble? Well, here are the things that can go wrong with a bone marrow transplant/stem cell transplant:
- Graft-versus-host disease (allogeneic transplant only)
- Stem cell (graft) failure
- Organ damage
- Infections
- Cataracts
- Infertility
- New cancers
- Death
A little worried, as much as I tell myself, and as the nurse and doctors tell me that transplants are safer today, those thoughts (sneaky buggers) still sneak in every so often.
A way of “Self soothe” I use is to ask myself “is there something I can do about whatever goes sideways”, “if anything does happen, does everybody have what they need from me”.
That would lead to acts of reassurance and freedom of burden, like listing my digital life’s logins and passwords and instructions.
Reminding myself of the many cool experiences help. There is no sense of regret like “I should have done that when I could” because of the excuse of having “no time” is now quite demeaning. We all have fucking time to prioritise if it meant that much to us. Whatever I thought meant a lot to me, I realize they don’t – it’s so bloody liberating.
Day -8
Chemo drug Bulsufan started today.
No side effects felt which isn’t surprising, as side effects had typically kicked in towards the end of the drug’s allocated full dose. So thankfully, an uneventful day. I’ve been told that things might suck a little from Day -4 onwards upon the next drug called Cyclophosphamide. A total of 7 days chemotherapy #fuckinReady
I snuck in my last protein bar at breakfast after eating an egg from the hospital. For the rest of the day, I had a palmful portion of boiled shredded chicken with boiled onions and boiled cucumbers for lunch, followed by a palmful portion of boiled shredded pork with boiled onions and 4 little pieces of canned pineapple pieces with my beef bone broth for dinner.
Liquid and solids intake and outtake tracking start today too. It is sooooo much easier with the tools here at QMH compared to the Alicante hospital’s piss pan. You know you’ve gotten tougher on the gross handling scale when enduring spilt piss your hands because the piss pans were not designed to pour into a tiny bottle opening. Since I was waking every 2 hours to pee throughout the night, I ploughed through a bottle of hand wash in a week.
Let the 90 minutes-interval piss tracking begin!
Day -7
As warned, I didn’t get more than a few hours sleep last night.
Since each chemo dose needed to be washed down by saline and some other liquid before a new bag is hooked in, most of the night was spent turning off the machine alarm, calling the nurses station saying “gei hiong” (machine’s going off), and of course, toilet trips. At least I got thru a few podcast episodes. One was Better in Bed podcast where Sara Tang and Jye Smith interviewed Jade Lovell, YouTube host of popular science show SciQ about Exploring the Forbidden, followed by Peter Attia’s 3-hour interview on the Joe Rogan show. I think I need to listen to that one again and do better in digesting the content of Attia Medical’s founder.
It’s 2pm and I’m sleepy AF. I wanna sleep at normal hours tonight but why can’t I just take a nap tho’? OH, it’s probably ‘cause I just got a call from the transplant centre saying I need to pay the shipment fee of 148,000 HKD for China to release the marrow in 6 days. NOW, as I’m day 2 into a marrow wipe-out chemo knowing I’m so close and I’ll pay up even after “hustling” for a 500,000 HKD deposit. Well played. Can’t nap. Woosah. #BagKickingNeedsToSaveMeFromThrashingHospitalRoom
Day -6
Long nights persist. The body was ready to pass out by 4pm. I fought til 6:30pm then called it a day. Got woken up a few hours later for next bag of chemo, saline, potty break and nausea.
Started on the hospital’s nutrient shake last night. Sure, it does have a ton of preservatives but trading it for the nutrients I ain’t getting from my end-of-the-world stash of instant noodles and breakfast cereal. I was suggested to keep boxed fruit juice and fruit jelly cups in my stash too but to go from not eating any of that to now having them as last options during my weakest time, I have trouble accepting. We’ll see how long I can keep up my 500g of bone broth a day with the occasional tin of tuna.
Today’s saltless meals were about the same as yesterday with the additional serving of IsoSource
Breakfast
2 eggs
Snack
237ml Nestle Isosource Unflavored
Lunch
Approx 50g boiled pork
Approx 120g mixed boiled cucumber, tomatoes and onions
1 spoon white rice
Snack
500g chicken bone broth (from Feather and Bone)
Dinner
Approx 60g boiled fish
Approx 80g boiled reddish
1 spoon white rice
Snack
237ml Nestle Isosource Unflavored
Day -5
Adapting to the pace of days and nights now probably works well with this season’s circadian rhythm. It gets dark by about 6:30pm, which is now about an hour after my last meal for the day. Breakfast is served at 8am and since I ain’t supposed to eat food that’s been left out for too long, I force myself up and ready to eat by 8:15am latest. Circadian rhythm eating – checked.
Potassium’s been low for the past 2 days. Liquid and pill form prescribed. Have you tasted liquid potassium? That shit’s sharp and nasty.
Energy levels started to drop yesterday but managed to get in 20mins of accumulative activity.
One of the current procedures is for me to use the room’s phone and dial the nurses’ station extension for every need, leaving the emergency button above the bed strictly for emergencies only. After 15 minutes of the nurses’ station not connecting from my room line topped with the persistent machine alarm going off though, I succumbed to that emergency button. Twice. Still have no clue why the phone was busy last night, even when I called the nurses station from my own cell. It’s kinda worrisome…
But you know what, it’s still nothing compared to new moms losing sleep all night soothing their babies.
I can handle this.
Day -4
I’m hungry.
For the sake of salty goodness, I caved yesterday and asked for some instant noodles. I haven’t felt the excitement to taste Indomie again after a long time but was surprised instead when it arrived with none of the flavourings. It was just cooked flavourless noodles. Never have I felt beaten by instant noodles.
On the bright side, hello 20g of Honey Stars on the approved food list, which I mixed in with the unflavoured IsoSource.
Docs and nurses have been cautioning me to buck up for the coming days from today. Cyclophosphamide commonly comes with worse side effects, from what they’ve seen with other patients. So I shall enjoy each moment I can until that happens. Still not sure if I appreciate the heads up or not though, then again, there was my induction chemo in Spain. Each time I sat up or tried to have a conversation, I kinda wondered when I’ll see the end of those side effects. You trained me well, Induction Chemo. Now let’s do this, Transplant Chemo.
Barely 3:30pm and about 2 hours since Cyclophosphamide, I can feel shit’s about to get real.
Nausea has started.
Day -3
Couldn’t see straight. Kept my eyes closed most of the day.
Could hardly even bear having sound and light in the room with that heavy head. The body felt extremely bloated down to the calves, the only bittersweet release was a jab of diuretics that leaves one chained to the toilet for 14 hours.
Cold sweat hit. The heat and the shivers. Did I run a fuckin marathon then jump in the arctic lake?
What really got me is the GI pain. Like an alien trying to tear up my GI wall without the beautifying skills of Edwards Scissorhands.
There are the faintest hints of flashbacks of one-too-many-tequila nights with dignity drowned in the waves of leisure intoxication as I laid next to a public toilet. Toilets and memories.
Or maybe it’s nausea that makes all of those memories.
I haven’t felt that awful since the induction chemo in Spain.
That was most of yesterday and last night.
Another day of Cyclophosphamide again. Here we go.
Smiling is hard today.
Day -2
Everything’s a blur.
Ate 1/4 pack of oatmeal and Frosties.
Threw it up.
Day -1
Negative everything.
Nausea every waking moment.
No food or drinks were going in as I struggle to keep whatever’s already in me down.
Day 0
GI pain has been present since yesterday. Might be a storm coming.
Stem cells arriving this evening and I’m told transfusion starts roughly 10pm.
Typing this is tiring.
I’m also feeling more emotional. It might be how Fightworld was done but I choked up watching every episode, especially the episode on Senegal.
Did I eat?
Also, I never asked the doc this question but on Day 0 with no marrow, am I dead in a way? hmmmm
Day +1
Marrow didn’t arrive at the airport ’til about 11pm last night. By the time the procedures were ready, I was transfused with my new stem cells at about 2:00am this morning.
You guys, I feel a little more HUMAN today. It’s been 3-4 days of suffering. I hardly admit to feeling sufferance so for me to describe the past few days as such, I ain’t exaggerating. Every waking minute was filled with nausea and agony, the GI pain was constant while hunger persisted yet I couldn’t stomach anything.
Despite all of that, I was craving tacos. It’s been a weird ass few days and the worse I’ve felt ever.
This minute where nausea is a whole lot better and the GI pain is not as constant, I feel like I can lift my own spirits again.
I finally started eating again, which helps the hunger pain.
Spam was fucking delicious.
Day +2
GI pain was bad today.
1 Fucking panadol is all I get?!
And another pill that supposedly stops bowel activity?
Nothing worked.
Just had to bear the pain throughout the night.
I feel exhausted.
Back to feeling like a sack of painful shit.
Day +3
Motivation is non-existent today.
Didn’t feel motivated to do any exercises nor did I feel like writing or being social.
It’s been a constant low mood for days now.
Doc said I look upset.
Well, WHADDAYATHINK DOC?
I’m in pain. It’s hard to smile.
Day +4
GI pain increased massively from the minute it woke me at 4:30am.
It’s draining and interferes with the ability to eat, it kinda feels like it’s causing nausea too.
I’ve asked for stronger painkiller today and all doc said he’ll do is feed me the pill every 6 hours instead of 8.
I don’t know why I can’t have something stronger.
3kg lost at this point.
Day +5
GI pain and nausea is now persistent.
When this nausea hits though, I get a weird buzzy headache and no position is comfortable. Still, have trouble eating.
I asked the doc today why I can’t have the morphine now for the pain and he said it’s because it causes constipation. He reckons I’m gonna need morphine for mucositis and want to keep me on morphine as little as possible to ease constipation, despite me telling him I had a normal poo today.
This morning weigh in, lost almost 4kg.
Day +6
A fever came on early this morning. At one point, nausea, GI pain, headache and fever all present. MAN. This is one hell of a test
Hair loss started.
I had a platelet transfusion just before lunchtime and had an anaphylactic shock to it. The last time I had a reaction this severe was unknowingly dining on an Indian dish that had cashew paste in it, despite the waiter insisting the dish is nut-free. This reaction came on much quicker where my nose was completely and I could feel my throat swell. I knew something was off when my eyes went “hitchy” (tiny swollen dots around the eyelids) but the nurses said it’s mild, that we will “wait and see” and left.
I called the nurses’ station when my nose blocked up but no one came right away.
So there I sat, wondering why they didn’t take me seriously. Tremors set in and so did my instincts. I pushed the emergency button and an assistant came in, greeting me in shock. Only then did I feel the surge of panic and relief at the same time, as 3 nurses came right in to administer 2 doses of antihistamines and oxygen via nostrils, which was useless because I couldn’t breathe through my nostrils. My doctor came for his round right about this time fortunately and able to see my symptoms fresh. He ordered another shot of antihistamines and steroids.
Fever persisted with tremors and headache throughout the night.
It’s been a hell of a day.
Day +7
I have woken up with tremors again early this morning, due to fever.
Headaches stayed on since yesterday, I haven’t felt this weak since a week ago during the bad nausea days.
Also learned that I’m emotionally vulnerable. The instant oatmeal I brought is one of the only things I can stomach for breakfast. However, I had the same nurse who mistakenly told me heater is allowed this morning and she said I can’t have the oatmeal because it’s packaged in paper material. I lost it. I told her I can already barely eat anything now I can’t eat that either? Tears came streaming down and I had a cry.
I cried over oatmeal.
I felt like such a child.
She said she’ll have the dietitian come up to tell me. I really don’t get the purpose of having someone else tell me the same thing. I feel hungry and I can feel my throat starting to have a little swelling swallowing, which means mucositis is just around the corner and eating would be near impossible then. But nooooooo, let me starve anyway.
For the past week, I’d have about 600 calories on a good day. On a shitty day, barely 400 calories. The aversion to the taste and texture of hospital food started when my nausea was really bad. These few days, even spam and rice is a challenge to get down. So seriously, oatmeal was saving my life. Fuckers
Rash came back that looks like that same allergic reaction. A nurse came in to take a look and started to asked if I would like some antihistamines. FUCK DID YOU REALLY HAVE TO ASK? I am NOT gonna sit here and “WAIT AND SEE” again until this gets far worse to deal with. I insisted I get some.
Is it obvious I’m losing my cool?
Day +8
Fever persists daily and nightly, so did headaches last night.
I asked the nurse why can’t I have paracetamol intravenously since it reduces fever quicker, given it’s not a good idea for me to be in the state of fever for a long time. The nurse agreed it does but I’m to have panadol for now until doctor approves other medication. I then asked about painkillers for the headaches, and that I fear internal bleeding if the headaches doesn’t subside. The nurse agreed that’s a concern but I’m to “wait and see”.
I’m REALLY disliking this whole “wait and see”. The most ridiculous thing I was told last night was that the nurse said for me to ask my family member to get those fever-reducing patches from the pharmacy for me. ARE YOU FUCKING KIDDING ME? I’M IN A HOSPITAL AND I’M TO RELY ON SOMETHING OFF THE SHELVES AT MANNINGS?
Frustrated? Me? pfffftttt…
Hives got worse since this morning. By night, I was covered in angry hives all over my torso where they itch like crazy. I knew they would always say wait and see so I waited for 75 minutes after they gave me a shot of antihistamines to tell them my hives didn’t subside but got worse instead.
A nurse who came in said, “let’s wait and see”.
I wanted to throw a chair at him.
15 minutes later, I was due to go down for a CT scan to rule out brain bleeding, since my headaches have been persistent. Once they saw how swelled my face was again, then only did they took action and gave me a shot of steroids before wheeling me down for my scan. Steroids helped the itch a little but did nothing to subdue the hives. They remained angry.
Here’s something I don’t get. They go through all this trouble of ensuring I don’t eat oatmeal that’s packaged out of paper material because there’s the risk of pathogens. BUT they have no problem leaving me in the hallway outside the CT scan room for 20 minutes where I’m exposed to all kinds of hospital bacteria before a porter was available to wheel me up.
Confidence in my medical team diminishes by the day.
Day +9
Rudely awakened by the most debilitating pain all over my back and in my gut, plus a fever again. I knew I had a fever when the assistant does his daily ritual taking temperatures at 6am. So I had assumed that when the pills are delivered at 7am came, a Panadol would be present. I asked about it and the nurse said he’ll check my temperature first. But what he ended up checking was my temperature taken at 6am, not at 7am, which he came back to tell me at 7:15am that my temp was only 38 at 6am. At this point, I don’t even feel baffled anymore by this lack of common sense and politely asked him to take my temperature there and then. I asked him what it was, he said 38.9. I replied, do I qualify for a Panadol now? He said he’ll be right back with it. My back felt like every muscle was spasming and twitching, no position felt painless. The cramps took no breaks this time. It’s like the Hulk’s in there holding on to my GI tract with constant tension and doing fucking “band-pull-aparts”, no fucks given, the fucker sustained constant tension for 3 hours. I had asked for painkillers at 7am which is the same one pill that hardly works. I gave up bearing it at this point and called for a doctor by 8:10am.
Morphine was finally approved at a super low dose. It helped mitigate the pain but not completely, I could still feel the cramps and muscle ache but at least there are breaks in between where I don’t feel it as much. Doc is finally taking me off the antibiotics I was on when the hives broke out to switch to something else. This should help us identify if the hives were a drug reaction of a hyperacute case of GVHD, since seeing signs on GVHD as early as day 8 is not common. Steroids are also prescribed to help with the hives at a low dose. The itch hasn’t gone away from the first shot of steroids. Hives continue to spread all over my face, down to my palms and my thighs. I HOPE AND PRAY they will have mercy on me and just up the fucking dose before I scratch my skin off.
OH, they forgot my breakfast this morning. I’m having the most charmed fate with this hospital so far.
Neutrophils are still low at 0.03. I’ve been <0.10 for 6 days now. Platelets are at 20 and possibly need transfusion again but there’s more discussion now whether they can hold off another day seeing how I already have this current reaction and fever. My body is taking hit after hit, I’m praying hard it makes it out of this tornado gutter soon.
Hives kept spreading. The steroids given ain’t as effective in easing the itch anymore. I resembled a mountain bear wriggling on my bed like a tree trying to scratch my back while no fucks were given expressing that utter relief from scratching. A hideous satisfaction. Steroids were apparently already a high dose and only allowed every 24 hours, so we tried another oral pill and some ointment. Nothing worked. And since the doc couldn’t give me any more meds to ease the itching, I finally asked for something to help me sleep. Doc said I could choose between a sleeping pill or Xanax. I’ve never had a Xanax so decided to try it. Still itchy but waaaaay chilled.
Take what I can.
Day +10
Felt groggy and itchy upon waking.
After breakfast, a high fever crept up to 39.7 Celsius.
It’s a good thing the doc came earlier this morning so he could see my state. I could hardly move in that state of fever, barely opened my eyes all morning.
In fact, I barely remember what happened this morning, still groggy from all the meds combined. But he finally agreed to my request of getting paracetamol intravenously instead of a shitty Panadol so we could reduce the fever as quickly as possible.
He is also now more confident that hives are symptoms of GVHD, since removing most of the antibiotics didn’t seem to stop the hives from spreading thus ruling out drug reaction.
If this is GVHD, I would be an unusual case of early engraftment, as engraftment typically takes 14 days. Observation will continue, in the meantime, doc had up the dose of steroids to counter the hives.
It’s still spreading and it’s still itchy.
I worry about scarring but this itch is BAD.
I can’t stop scratching.
Hey, mountain bear from Planet Earth, ‘sup bro. How’s your tree?
Day +18
The past 8 days have been a blur of emotional and psychological hits.
Hence the lack of daily updates.
The hives were a case of GVHD and uncommonly engrafted early. I was put on double high dose of steroids for 5 days to be followed by another 5 days of high dose steroids. They contained the itching after about 4 days although the reminiscences of hives remain visible until today, like haunting shadows of a nightmare.
Laying in bed 99% of the day reminds me of the agony as my body is covered in little cuts and scabs from my powerful scratching. I didn’t realize I rubbed hard too as my legs are also covered in little bruises. It’s kinda maddening to know how hives, fever and headaches combined can make you lose all sense of self-control.
I’ve been put on immunosuppressants which also drives my nervous system crazy. The effects are feelings of raised HR, hot flashes, skin burning around the eyes and cheeks, a constant buzz that results in a CONSTANT quivering feeling along my respiratory system into my stomach. I imagine that’s what chugging a triple espresso every hour would feel like, quiver-wise.
It’s been a challenge taking a shower in an air-conditioned room during the winter with that quiver and actual shiver. Now that my hair has completely fallen out leaving my scalp bald, the cold stings more. Guess I’m never moving anywhere that’s cold most of the year…at least not ’til I grow a mop of hair again and live a life of fleece-robe-all-day-errday.
There hasn’t been decent sleep in weeks. Now with the addition of drug reactions, sleeping naturally’s nearly impossible. I was given Xanax for 4 nights in a row but found that my mood was affected profoundly. During the day, I was in a constant low mood, had no inclination to try smiling and didn’t feel like talking to anyone. Texting my family updates even felt like a chore. Was it a mild state of depression? I really didn’t like it and went off Xanax. Better to lose sleep than my mind, yo. Then I tried sleeping pills and have been on it for 4 nights in a row. The first few nights didn’t have any effect but last night had been the first night I had 4 hours straight of sleep in weeks.
Could be an effect of no sleep and Xanax, could be a combination of being in isolation feeling like a sack of shit and wishing hard I never have to go through anything like this again… I binged watched both seasons of 13 Reasons Why and cried most episodes….It could be the content of the show too. After 18 years, this is the second time I’ve cried over what I went through. It was kinda therapeutic though I’m very grateful I feel strong headed, to begin with. Being isolated in a tiny room watching a TV series that brings up your haunting past sending you down a spiral of emotional trauma is not something that anyone could deal with easily. For this reason, I am SO GLAD I sought a therapist to talk through my experiences prior to the transplant. I felt like I had cut opened that hidden scar and dealt with the underlying parasitical bacteria before nursing the wound to health again. In a way, I felt like I was already prepped to be able to watch that show in isolation.
I weighed in at 59kg upon admission. This morning I weighed in at 53.7kg. The steroids fluctuated my weight by 2kg about 4 days ago and my taste buds are a complete whack. Hospital food texture and blandness repulses me, so does the thought of canned soup and tuna. So I’ve been sticking to what I can stomach – spam with congee, oatmeal, instant noodles, Ribena juice and the occasional gummy candy for calories. Prune juice tastes AWFUL but I kinda need it. Brother Andrew got me some apple sauce…which I have yet to try because the thought of its texture makes me go “yuck”. Oddly, my food fantasy has been southern fried chicken n’ waffles, tacos, Venezuelan arepas, pork belly bao, salmon teriyaki, General Tso chicken and soy honey chicken wings. I’m in a weird picky state and I’m definitely missing that vegan soul. I had dangerously entered this world of IG food trolling that is both satisfying and disturbing. Ever heard of ASMR food? Look it up.
Having ulcers (either GVHD or chemo side effect) all around the inside of my lips don’t help the process of eating either. Today’s been better though, I actually finished my serving of oatmeal for breakfast and ate more than half serving of my spam and congee. Small win.
Major muscle atrophy, since I’ve hardly left my bed. Showers have been the most draining task yet. But, I managed some pacing in my room today. Making a U-shape pathway around the bed amounts to 12 steps in this tiny room and I did laps of that for 15 minutes. Another small win.
Plus, I’m logging again, particularly motivated after some encouragement. Thanks for the reminder BT.
Small wins FTW.
Day +19
Had a mini-scare when I saw the shadows of the hives brighter today, though they subsided as the day went on after my shot of steroids. So this is the life of paranoia huh…
I finally started reading again. Went on Amazon and downloaded a whole bunch of samples for my kindle-ciphering process. It’s nice to do something without sound again. I tried watching Homeland Season 5, Game of Thrones Season 1, True Detective, Fargo, Mr Robot, Castlevania, Greenleaf, Deathnote, and House of Cards Season 5 but none of them are really sticking. I might have drama-ed out with all 3 seasons of Hannibal and 2 seasons of 13 Reasons Why back to back. Drama-drained. I’m down to the TV series tolerance level of Brooklyn Ninety-Nine and not a lick more serious than that.
But reading again is nice.
Can we also address this trend in Korea where people film and record themselves eating slurpy and crunchy shit on IG? I mean…COME ON!!! WHY CAN’T I STOP FUCKING WATCHING THEM??? #theRealHungerGame
Day +20
Things are feeling a little better.
Drug reactions are more tolerable or perhaps I’m just adapting and getting used to feeling the symptoms as part of everyday life.
Energy levels improved and I managed to pace a lil’ longer up to an hour.
Appetite’s better too! Managed to have some tuna, first proper protein in weeks!
Steroids have been changed from IV to oral form. Fingers crossed GVHD is still contained after the switch and that I can be discharged from the hospital soon.
Day +21
Despite the remaining marks of the hives, there hasn’t been any new rash. That’s a good sign.
I still can’t sleep after being off of sleeping pills for 2 nights. It’s kinda weird feeling tired but not sleepy enough to nod off.
Truthfully, my mind has been racing like Nascar gone wild. Which is probably the real reason why I can’t sleep in addition to how the body’s feeling from all the meds.
Introduced breakfast cereal to eat with the nutrition shake from the hospital. Cereal YUM. Shake YUCK. But hey, I’m eating. Things are good.
Day +22
I’ve finally managed to be less of a douche and replied to some messages.
I don’t know why it feels tiring keeping up a conversation, maybe it’s because feeling like a sack of shit is draining. Even when my brother visits 2x a week, I can barely keep up 15 minutes of conversation before feeling tired. I know this will improve in time though, slow and steady.
Bone marrow aspiration (BMA) and biopsy are meant to happen today. It’s a big deal because that will tell us the % of leukaemia cells and % of donor cells in my body.
Finally watched the movie The Notebook. Cried again. But it IS a lovely story.
Another night of little sleep, probably managed to accumulate about 90 minutes. Seriously, how is this possible? 3 nights of accumulated 2 hours of sleep and I’m not dozing off yet during the day? FFS
Had to top up another 110,000 HKD as part of the transplant care. All in all since May, my Hong Kong hospital bill alone is about 1.5 million HKD. I don’t even know how much my bill was in Spain back in April with the first hospitalisation and chemo.
This shit is whack.
Day +23
BMA didn’t happen yesterday but hopefully today! I just wanna know!!!
They’ve switched my antiviral meds Valganciclovir from IV to oral which I will take twice a week now. Hopefully, the steroids and immunosuppressants dosage will be lowered a little soon too and get these quivers slowed down. I’m on Cyclosporin and Cellcept.
Bloodcount seems to be stable. Platelets and ANC are within the normal range and have stayed that way for 4 days in a row. AWESOME!!!
BMA finally happened later in the day. It kinda felt surreal after having been through all that shittiness and finally feeling human, I’m back in that fetal position to be jabbed and prodded at the hip bone. I think my mind is just going into hyperdrive. Nonetheless, this round of aspiration and biopsy actually hurt a little more than the last two here in Hong Kong. Ah well. Still better than the experience of witnessing marrow being violently extracted by a panting doctor from your chest bone back in Spain!
Day +24
I’m STOKED. If no problem arises, I get to leave the hospital tomorrow!!!
Aspiration results came back showing blast result of <0.1 , which is great! Apparently, every normal human would show blast result of <0.1 so that’s not an alarming result. What we gotta wait for now is the molecular lab result where we’ll see how much % of donor cells have engrafted. That will take a lil’ longer, doc ain’t even sure how long, just said: “it will take a while”.
The wound from the aspiration and biopsy hurts, surprisingly. It’d never hurt before. Fingers crossed it ain’t anything.
So far, no additional symptoms of GVHD. Itch came outta nowhere but there ain’t no signs of new rash, so we’re guessing it’s just from dry skin and a rush of blood circulation from me being more active these days.
I can almost taste real food. There are so many cravings now I don’t even know where to start. The good sign is that I’m hungry. Dropped to 51.9kg this morning. On hindsight, perhaps having gained that extra 5kg prior to admission prevented me from dropping to an underweight number.
Who am I kidding though? It’s all fat gained and muscle loss.
Starting over, again #letsdothis
Day +25
It’s a GREAT DAY. I GET DISCHARGED TODAY!!!
Despite itching most of the night and not sleeping a wink (again), there ain’t any signs of new rash or visible irritation. For the next month or so, my doctor’s appointments are 2x a week with an IV med 2x a week as well. From there on, the dosage of steroids should be at tapered down and eventually be off of them. Things to look forward to. I’m so done feeling buzzed, bloated and puffy from the steroids.
It’s been 39 days since I’ve been admitted and I haven’t felt this STOKED in a while!!!
Bye bye, tiny 8x8ft room!!!
See you never again please kthxbai
