Seeking to battle the dragon

Super Mario Bros aficionados of the original Nintendo era will remember a certain comforting rhythm to the game. The objective was to slay the dragon each fourth level, and in doing so seek to liberate a princess. But to gain the chance to take on the dragon you needed to confront various minor villains along the way, from Goomba toadstools to Koopa Troopa turtles to weapon-wielding Hammer Brothers, all while navigating rough terrain and preserving health and wealth. But should these challenges prove too demanding a player would never even reach a dragon and the princess would forever remain captive.

Right now the chances for me to battle my dragon are proving rather elusive. Desperate as I am to unsheathe my sword and deliver a strong first blow, instead I find myself in close combat with more pesky minor enemies along the way.

A metaphor, possibly stretched to its limit.

A biopsy on the lump in my mediastinum a few weeks back appears to have caused some complications relating to my lungs. This has left me with a pneumothorax, haemothorax, subcutaneous emphysema and a bruise on my abdomen that resembles an eggplant at peak season in every way bar flavour. Coupled with that, the insertion of the PICC line (the catheter on my arm to deliver the chemo drugs) prompted a blood clot near my shoulder.

The upshot of that has been significant difficulty breathing and a tightness in my bicep that at one point made it difficult to get the arm through my sleeve. The various symptoms were concerning enough that I was admitted to hospital for eight days for monitoring and treatment. At one point a chest drain was inserted, removing two litres of blood from the pleural cavity around the lung, and for several days I was wandering the hospital ward with a unit resembling a portable fan. The PICC line, which was intended to remain for six months to carry the multiple rounds of chemotherapy, had to be removed less than a week after it went in.

These twin problems led to a medical quandary. Typically patients with a blood clot are given a blood thinner to prevent the clot spreading and help the body break it down naturally. But patients with a haemothorax need to slow the flow of blood to the pleural cavity, and so an anticoagulant is sometimes in order. This left the medicos trying to find a way to thin the blood near the clot in my shoulder and helping the blood in my chest clot. Better to try one at a time – stem the bleeding first, then seek to fix the clot. Tough judgement call for the doctors, and slightly terrifying for the patient.

(Once I was in hospital, though, I figured I might as well get the full experience. One morning during my stay my reddish face suddenly went a ghostly white and my blood pressure sank, prompting a MET call. I didn’t feel too bad, but the presence of a dozen worried doctors and nurses huddled around my bed within minutes to check almost every metric possible was both reassuring and terrifying all at once.)

On the upside, through this period the first round of chemo was administered – successfully. For five days the R-EPOCH mix of drugs were slowly released into my body through a portable CADD unit via the PICC line in my arm, a few millilitres each hour. Despite the dire warnings of the side-effects I would experience, I managed to escape them all on the first round. For now, at least, my energy levels remain decent, my hair remains in place and my lunch remains eaten.

The removal of the PICC line due to the blood clot has left a dilemma about how to deliver the chemo drugs next time around. The challenge is to get the chemo drugs circulating around the body without putting too much strain on a peripheral vein. I’ve heard multiple views on what to do – install the PICC line in the same arm (the left one) or try the right, or to opt for a catheter installed closer to the heart and bypass the arm altogether. Or try for something in the lower body and take a different avenue of approach. Each carry risks, including new clots, and all impose significant constraints on my movement. And until I know which path the doctors opt for ahead of the next round of chemo the week after next, I’m left with a nagging uncertainty about what lies ahead.

The week-long hospital visit blew off course my strategy for coping with the disease and the treatment. From very early on I was determined to maintain as much routine as possible. I wanted to continue to live at home with my wife, continue to cook my ridiculous risotto, continue to write speeches for the boss, continue to ride my bike around Lake Burley Griffin, continue to do crosswords over muesli on the weekend. I didn’t want to spend six months thinking of myself as a cancer patient, but instead as a bloke who happened to have cancer. I knew the treatment would take its toll, and at some points the cancer, the chemo and its side-effects would leave me unable to keep up my routines. The aim, though, was to seek to return to those routines whenever I could.

From very early on, though, that intention was undermined. In the first three weeks after the symptoms become apparent, two weeks were spent in hospital. Given my medical situation, there was nowhere I would rather have been.

But no place beyond prison is more designed to sap a person of their ability to live autonomously. Decisions are taken out of the hands of the patient and given to the institution, from meals to medication to bathing to exercise. Exposure to natural light is minimal and the temptation to while away the hours in bed is great. For some patients being under such control is essential but for others seeking to keep their wits it is a grinding frustration. Over the course of the week I found my ability to take care of myself slowly eroding.

I left bruised and tired, but was determined to make the most of the weekend that followed. The simple pleasures of Canberra were all the more pleasurable for someone desperate to stave off institutionalised life. Joining up with my wife, mother and sister-in-law, we headed to the shores of Burley Griffin to watch the sunset from funky Westside Park complex on Saturday, then joined the throngs at the Bus Depot Market on Sunday before heading to see the mighty Canberra Cavalry snare a victory in the baseball. All good fun, not least because of my grim determination to enjoy them, no matter what.

The experiences of the past few weeks have left my physiological state rather fragile. I have nagging doubts about my body and live in fear that it will once again turn against me, leaving me with a jolting pain or gasping for breath. I move slowly and deliberately, avoiding anything sudden that I might live to regret. Like in any context, trust is tough to earn and easy to lose. Right now, my body has given me little reason to trust it.

Exacerbating the pangs of self-doubt are the mix of medications that have become a staple part of my diet. Beyond the six drugs that form the chemotherapy treatment I have been taking five oral drugs to combat various side effects, as well as a daily injection to thin the blood.

The cumulative effective of this Breakfast of Champions is that over the course of the day my body passes through phases of extreme energy and extreme lethargy. In the first few hours after taking the drugs, the steroid being the most likely cause, I feel a jumpiness that leaves me tempted to act impulsively, depriving me of patience and judgement. I’ve learned the best response is to restrain myself and avoid yielding to the desire to act impulsively, instead sitting tight and waiting for it to pass.

Then later I’ll feel tired and confused, my brain struggling to keep up with the stimulus around it. During times like this taking in complex information proves difficult. I had to read the opening few paragraphs of a news story – The Guardian, if you’re curious – several times before it sunk into my brain. Taking in the contents of a novel – Steve Lewis and Chris Uhlmann’s page-turner The Mandarin Code – during a phase like this has been just about impossible. Multitasking, even simple things like reading and eating, is tougher than it should be. Rest seems to be the best response, and thankfully on the other side I find I’m at my most lucid and most able to connect with the rest of the world.

Since I started treatment my diet has changed significantly. For a few years before I fell sick I had sought to instill discipline in what I ate. I had slimmed down from about 130 kilograms to 105 kilograms and took a discerning approach to what I put in my mouth. No formal diet, but an acknowledgement that I ought to only eat in ways that valued highly the food I was eating. Avoiding comfort eating and taking in high-calorie, low-nutrition foods was a bit part of my strategy. I wasn’t always successful but it guided my thinking and eating, and for the most part it worked.

In recent weeks, both in hospital and home, my approach has changed significantly. I have began eating so much more, from biscuits to cups of tea to muesli bars to chocolate, as well as three decent meals a day. It is tempting to blame the rekindled appetite on the steroids, but I have my doubts. This seems even less likely as an explanation given the chemo has dulled my sense of taste, and only strong sweet and salty tastes penetrate the dull metallic sensation that swamps subtler flavours.

Instead, I think my greater appetite is a psychological response to my circumstances. In hospital and elsewhere I’ve seen bodies emaciated by the effects of cancer, chemo and radio – people left thin and gaunt, their bones protruding and their flesh bruised. The stories of people losing their appetite and struggling to eat during treatment are common. While I start with a rotund body far from this state, part of my subconscious is terrified of ending this way. That part of my subconscious wills me to eat, and eat plenty, right now, knowing that for now at least, my appetite remains strong. So this past weekend has been one of abundant bread and fruit and dips and salad and tea and biscuits. A mere bag of bones I ain’t.

The routine I am craving still seems some distance away. Multiple medical appointments dot my calendar over the course of a week, and the potent mix of pharmaceuticals cloud my ability to make firm plans. The fog of fatigue pervades most of my thinking. Sooner or later, though, I’ll seek to return to the patterns of living that keep me sane. I hope that’s not too far away. And then I can try once again to slay the dragon.


Anonymous said…
The dragon is very close.
You can see the dragon at arm's length, nearly touching.
Tim Kelly said…
Eat for strength. Eat for comfort. Eat to be social.

Gods though, I can't imagine how much being in a hospital for much of this consumption would sap one's desire to eat at all: they're not known for their culinary skills. Second only to airlines in the scant regard given to "standards".

Hopefully much food being ferried in. Pass time reading food blogs and drawing a mental list of where to go. I'll kick you off suggesting

Sorry to hear about the challenges before you. Hope you and the wife are holding up well.

Anonymous said…
A tough start to your treatment Ari. The blood thinner quandary sounded like a tricky one for the docs to get their heads around. It sounds like you might be comfort eating, which is totally understandable! Go for it I reckon.
Lots of people are backing you. Take care x jane

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