Welcome to Hotel ChernobylWhen I first looked at my chemo protocol I thought there must’ve been an error in the printout. The chemotherapy I‘d heard about in the past lasted about six cycles, with a cycle consisting of a dose of chemo on the first day and then a few weeks of recovery in between each dose. What I was confronted with was far more substantial.
I had been told that given my relatively youthful age the best course of action for my particular form of lymphoma was to undergo what is essentially a paediatric chemo regimen. Kids can tolerate greater doses of the cytotoxic drugs over longer periods than those over a certain age. At 36
and reasonably fit, the doctors believed I was just young enough and strong enough to cop it on the chin; much older and they would’ve had to have gone easier on me, but then my prognosis wouldn’t have been so positive.
Rather than facing the usual several cycles of chemo, I was to start with a 30-day ‘intensive induction’, followed by six blocks of consolidation therapy, a 22-day delayed
intensification, then another three blocks of consolidation. Each of the consolidation blocks involved two to three days of treatment and a hospital stay of five days to a week, depending on blood results. I’d get a couple of weeks off between each block, and, all going to plan, I’d then start two years of maintenance therapy – all up, nearly three years of chemotherapy.
It’s worth noting here that I have two kids, one of whom turned four a fortnight before my chemo- therapy began and the other who was yet to celebrate her first birth- day (a milestone that I was only able to enjoy via Facetime thanks to a low white blood cell count on my behalf and a nasty little cough on hers). My mind was plagued with thoughts of my children growing up without a father, and how my partner, Georgie, would cope as a single mother (which was probably giving my parenting far too much credit, as she does the bulk of the work anyway!).
That said, with less than a month to recover from my median sternotomy, I didn’t really have
a hell of a lot of time to dwell on what lay before me. When I went back in to hospital my physical wounds had healed but my mental and emotional trauma was still very much present. Everyone was telling me to stay positive, but it was impossible to hide the fact that I was shit scared.
The word ‘chemotherapy’ itself is enough to send chills down one’s spine. It evokes images of hairless humans who’ve lost the colour from their skin and the life from their eyes; bags of bones attached to metal trolleys from which bulging vessels of who knows what hang menacingly. And vomiting. Lots of vomiting.
My initial farewell to Georgie felt worse than a break-up. I was on the verge of tears when I got out of the car and made my way to the automatic doors at the front of the hospital. She was putting on a brave face and I was determined not to let her see me cry or witness the fear in my eyes. Stupidly I turned back around to give her a final wave goodbye and then it all suddenly hit home. I raced back to the car, collapsed into Georgie’s arms and we completely lost our collective shit. I don’t think I’ve wept so unreservedly since I was a child.
My first night on Level 9 South, St Vincent’s Hospital’s haematology ward (or Hotel Chernobyl as I affectionately dubbed it), was quite a lonely one. I was the only patient in a room that would normally be filled with four sick humans, as the ward was on the verge of undergoing a major renovation and they were beginning to shift beds and their occupants down to Level 8 North, where the haematology ward would share space with the drug and alcohol ward until the renovations upstairs were complete.
In a strange way the timing of my diagnosis worked in my favour as my first intensive month of chemo took place before the ward shifted. Being on death’s door with an irrational and unpredictable patient in the throes of addiction in the bed next to you is certainly not ideal, as I would find out later in my chemo journey.
Thankfully I didn’t spend the whole first month on my own, and was joined at various times by, among others, a salt of the earth chap from Coolamon named Jimmy who had the nurses wrapped around his little finger, a federal politician who regularly wandered the ward yarning to his ‘constituents’, and a professional Santa Claus who was trying to arrange his chemo treatments around Christmas for fear that his bushy white beard and mane would fall out and he wouldn’t be able to work.
Before I could receive any chemotherapy drugs I needed to be fitted with a central line – a catheter inserted into the jugular vein and threaded down towards the heart. It was through this
line that I would receive most of my chemotherapy, anti-nausea medications and any antibiotics
I should need if I contracted an infection. The nurses also took blood from the line each morning. While the lumens attached to the line dangled from my neck like a misplaced earring, it wasn’t particularly uncomfortable, though it did make showering a bit of a nightmare as it had to be kept dry.
Treatment started the next morning. I was loaded up with a cocktail of prednisone (a steroid), vincristine, daunorubicin, cyclophosphamide, and intrathecal methotrexate and cytarabine over the first few days. The intrathecal medications are delivered via a lumbar puncture, a not particularly pleasant process whereby they slot a fine needle in between your lower vertebra and into the spinal column, from which they remove some spinal fluid and replace it with the medications. The worst part of this is usually the injection of local anaesthetic that precedes the lumbar puncture, but on oc- casion they miss the gap between verterbra and hit bone, which, despite the aid of said anaesthetic, still hurts like buggery.
Between days 3 and 8 I had no chemotherapy. I was just lying around waiting for the ill effects to kick in and being fed a cocktail of other medications to prevent viral, bacterial and fungal infections, as well as indigestion, constipation and nausea. I was downing more pills on a daily basis than your average gurner would get through in a weekend at Defqon.
Day 8 was my first encounter with a drug that would essen- tially become my arch nemesis and really define my chemotherapy experience. L-asparaginase, as it is known, is both the spawn of god and the devil in equal measure. Not only was it the most effective medication in treating my illness, it also made me feel like absolute dog shit, stripped me down to a 63-kilogram shadow of my former self and took me as close to death as I’d ever care to go. I faced eight infusions of this nasty substance in my first 30 days of treatment, and many more throughout the rest of my chemo protocol. At times I’m surprised I’m actually still here to tell the tale.
That said, it took the best part of two weeks for the nausea to really settle in, and by the time it arrived no amount of antiemetics could keep it at bay. The best thing I could hope for each day was that the drugs would send me off to sleep and that when I woke up sev- eral hours would’ve passed and I’d be feeling slightly less unpleasant. Unfortunately, I’d usually be woken up every few hours by a nurse wanting to do my observations and I’d struggle to find slumber again until the next dose of anti-nausea medication was due.
During this stage of the chemo I found that most food was unpalatable. I did manage to keep down a Vacanza pizza every now and again, and had the occasional hankering for pork and chive dumplings, but aside from that my diet consisted mainly of bananas, Smith’s crisps and chocolate pro- tein drinks.
As if the chemotherapy and all its lovely side effects weren’t enough, about three weeks into this first month I came down with a temperature and was promptly put on a heavy dose of broad- spectrum antibiotics. With my immune system in tatters by this stage, even a minor infection could prove fatal. I don’t remember much of the week that followed. I’m still unsure if it’s a case of my brain or the chemo drugs erasing the memory of some of the more unbearable times that month.
At the end of the first torturous 30-odd days of treatment I was finally discharged from hospital and had my second PET scan. My first took place after my median sternotomy operation, and it lit up like a Christmas tree. Call me humbug, but after the month of discomfort I’d endured I wasn’t feeling particularly festive while awaiting the results of scan number two. I was as anxious as heck, but somehow managed to fall asleep on the in-laws’ Darlinghurst couch and miss phone calls from the hospital, Georgie and my brother. When I returned Georgie’s call she told me that I needed to call the hospital immediately, but she gave nothing away in the tone of her voice regarding the result.
I promptly dialled the number for St Vincent’s and asked to be put through to the haematology registrar. Jamie, the young registrar who was on duty at the time and one of a team of doctors who had looked after me during my month-long admission, could not contain his excitement. The scans showed a complete metabolic response. I was in remission…
This is part two of a short essay titled ‘A Long Holiday in Hotel Chernobyl ’. Tune in next month for the third and final part of the series.