JANUARY 8 — Because my life will never not be an entertaining sitcom for the angels, my first chemotherapy session was both eventful and uneventful.
Eventful as in I caused a biohazard incident (more on that later) and uneventful in my experiencing no medical side-effects
How it went
My anxiety was worse than the actual procedure.
I had been noodling around on the bed, checking social media, messing with my iPad and then the nurses came carting in a medical cart.
“We’re going to start, so lie down.”
Then as I was lying there, my chest felt tight and my arms felt heavy.
I asked her if it was normal, if the anti-allergy and anti-nausea pills had anything to do with it.
The nurse said, oh no, we haven’t even started yet.
She took out two large syringes, one with red liquid (I would later find out it was doxorubicin or Adriamycin otherwise known as the Red Devil) and the other liquid I was unsure what it was but I am guessing it was cyclophosphamide.
As the medication was injected, I just focused on the feeling of my heart beating as the drugs were injected into my IV and within a few minutes I could feel my scalp heating up.
It felt as though someone had dropped liquid Tiger Balm on my head; it was an uncomfortable feeling but otherwise I felt nothing else anywhere.
An hour later I was bouncing around the ward asking the nurses when they would let me go.
Meanwhile my friend was there too, driving from PJ with a cooler bag for my three vials of Neupogen — one would need to be injected for days 5,6,7 of my cycle in hopes of keeping my white blood count up.
It’s to prepare me for the nadir, approximately 7-12 days after my chemotherapy dose, when my white blood cell count is expected to crash.
While the shots will help during the nadir, I will still likely be more prone to infection, my immune system as fragile as glass.
Dealing with the unexpected
I was a little too excited about getting discharged that when they removed my IV port, I didn’t press down on the bandage long enough (five minutes is usually advised) and it ripped off while I changed out of my hospital PJs.
There was blood everywhere.
Blood on my pyjamas, my clothes, my tote, the floor, the sheet, the hospital table and it looked like the set of Cancer Freakout 3: The Stabbening.
The funny thing is no one was fazed in the ward at all.
Not the nurses. Not the patient in the neighbouring bed.
While I was glad I wasn’t bothering anyone, it did disturb me a little.
It meant they’d seen far worse and just spurting blood everywhere was apparently not a big deal at all.
Perhaps, though, in the cancer ward, everything outside that big monumental event in your life just seems less horrific in comparison.
How to be normal when life is abnormal
I’m still on leave for a bit, giving me time to sort out a great many things— medical appointments, family visitations, setting up schedules, getting my house cleaned, and working on lawn upkeep.
It bothers me that I have to be so mercenary about fundraising but at the same time, it keeps me accountable to friends and supporters, who are now literally invested in me as donors.
So far, I think I have enough of a cushion for most of my targeted therapy treatments, barring price hikes, currency changes or government health spending rationalisations.
I update my Ko-fi page on Fridays with Ko-Fi exclusive posts, while on Facebook I write lighter, chattier notes hashtagged #ErnaCancerTelenovella.
My sister would rather me rest more and put all my energy into healing, letting her sort out “how do we pay for all the cancer s**t”.
That would be nice in theory but if there was ever a time for me to just put everything out there that would be now.
While I was doing my own research, I kept stumbling on things and thought, “Why don’t I know this? Everyone should know this!”
The more I learn, the less I feel I know anything.
I daydream about burrowing into my mattress and never coming out, cancer be damned.
If only there was some blog or website out there, where I could follow someone’s cancer journey and get some insights into what to expect or at least understand my own diagnosis.
Then I realise that the only way for it to exist is if I make it myself.
That’s the plan, then, to keep talking about cancer, to keep telling stories and sharing new discoveries the way a child would excitedly show off a seashell on the beach.
Right now, I’m wondering if there will be aid available for all the patients at Universiti Malaya Medical Centre (UMMC) who will not be able to afford the new price hikes.
I hope the assistance schemes will be enough and that no one gets told that, well, they will just have to find the money somehow.
Will that chatty older woman I overheard talking about how she switched to UMMC because she couldn’t afford private healthcare be fine?
Will there be someone to hold her hand and tell her they’ll figure something out?
I shouldn’t be the only one wondering about her welfare and for the welfare of all the patients in our hospitals, made so vulnerable to the constant rise in living costs.
Someone needs to be working on that right now, worrying about it right now, and whoever it is, it shouldn’t be the ones most affected. because healing is already going to take most of their energy.
Take it from someone who knows that too well.