Monday, November 30, 2015

Floored by fatigue

“I was so exhausted I had to lie down for 20 minutes after thinking about brushing my teeth.”

Chemo patients often have war stories about their battles with fatigue – played out in the style of the Four Yorkshiremen – and that’s my contribution.

The first round of chemo left me largely unscathed, but this past week the second round has hit me hard. The all-encompassing body-and-mind fatigue that has left me whiling away that hours in bed has been more debilitating than anything I have experienced before.

The complete lack of physical energy makes it difficult to perform even the most basic tasks, and the absence of mental energy makes creative thought difficult to achieve. Sleep provides little relief, but nothing else does either.

The numbing fatigue turns small achievements into major victories. After a quarter hour psyching myself up to empty the dishwasher, I rewarded this act of domestic heroism with a half-hour rest.

The medical advice to us chemo patients is to stay active, even when we feel crippled by fatigue. A few times last week I jumped on the walking machine on our veranda, only to find myself puffing within minutes and quietly cursing the experts and those who brought their advice to my attention.

My less-tired self sees the clear wisdom in the advice, but in the depths of fatigue it is hard to be appreciative, let alone to follow it.

One consequence of resting impassively for so long is that small aches and pains that would normally be ignored make a big impact on the mind. Twinges of muscles, sore joint and shallow breathing, all of which are standard fare for a chemo patient, become mental fixations that are hard to ignore. After a while I craved distractions to take my mind off the fatigue and everything else what was competing for my attention.

There are a few fun things to do when the heavy clouds set in. It's a great chance to watch some quality television I might otherwise miss - The Beautiful Lie has been my favourite in recent weeks - and to read things that flow easily - that'd be The Mandarin Code. And the gift of The 1000 Dot-to-Dot Book has proven therapeutic (adult colouring-in for blokes, I reckon). And there was a James Rizzi jigsaw puzzle along the way, although I was a spectator to my mother's puzzling through much of it.

Still, I better get used to it. The experts say the fatigue is an inevitable part of chemo treatment, and can persist long after the treatment itself has finished.

The process of dose adjustment means the chemo drugs will continue to intensify. Dose adjustment means incremental increases in the potency of the chemo drugs each round, accompanied by regular blood tests, until it’s clear we’ve reached the limit of what my body can take, and then continuing at that level, or a little less. That way I get the most potent chemotherapy my body can tolerate.

The idea makes a lot of sense, but in practice it means at some point in the chemo I will debilitated by fatigue, or nausea, or infection vulnerability – or at least the blood test results that indicate those things. The only way to avoid reaching that point is have the stamina to last eight incrementally increasing rounds without reaching my limit. It would be a remarkable feat, and right now I don’t feel too remarkable.

The past day I’ve had a bit more energy and have managed to go to hospital and work. Hopefully this indicates I’ve passed the worst of this round. But I have no doubt more exhaustion lies ahead.
Mother and son. After that I needed a good lie down.

Tuesday, November 24, 2015

The path to my heart

The second round of chemotherapy drugs have just been infused, and so far the side-effects have been tolerable. As I was going through the round of treatment it struck me that the whole process could be explained well with a series of haiku poems. Enjoy. 

The path to my heart
Runs directly through my groin.
At least it does now.

With a jab and poke
The surgeon has created
An express route north.

And through the passage,
For five days in twenty-one,
Flows liquid saviour.

Like those that follow,
The day begins with a 'roid –
Breakfast of champions.

Appetite whetted,
I head from home to ward, where
Professionals loom.

Friendly smiles greet
Those who pass the saloon’s doors;
Hope mixed with pity.

Atop an arm chair
I get myself comfortable.
Position assumed.

EPOCH’s my order
With a side of R for some
Sweetness, extra tang.

A chemo barman
Can turn this toxic combo
Into sweet nectar.

(But before we start
A little pill for nausea
Lest lunch go to waste.)

First, Rituximab
Zero-ing in on B-cells
Both good and hostile.

New and expensive,
This one make sure the others
Can best hit their mark.

Next come the stayers,
Who travel as a trio;
Devil’s amigos.

Vincristine is one;
Doxorubicin as well;
Etoposide third.

Together they sit
Merged as one in a “cassette”:
Worst mix-tape ever.

Drip, drip, drip, drip, drip
Just a mere quarter litre
Takes five days to flow.

By my side throughout,
Releasing the special blend,
The CADD pump beeps, whirs.

The size of a brick,
This feat of technology
Let’s me freely roam.

A dainty little tube
Feeds the chemo-colada
Into my belly.

As I sleep, eat, walk,
Work or dance the lambada
My CADD remains close.

Just as the friendship
Starts to fray at the edges
Relief is at hand.

The drugs nearly drained,
The time comes for CADD and I
To part ways, for now.

No party's complete
Without a chaser farewell.
And this one has two!

An alkylating agent,
Drip, drips its way in.

And a day later,
A quick jab to the belly,
To boost my white cells.

My filgrastim shot
May be all that saves me from

Once more I trudge home
My bones sore, muscles aching
Concentration lost.

I lay down in bed
Fatigue fusing head, pillow.
Waiting for next time.

In weeks ahead
I will curse the toxic brew
Ebbing at my being.

But for years after
I will toast to my good health
In mind, body, soul.

Showing off my CADD pump.

Monday, November 16, 2015

The new normal

Tony is usually a man of few words. An old-school barber with an earthy beard and some weathered tatts on his neck, he is damn good at getting the job done with calm confidence and maximum discretion. So when I came in for my two-monthly cut on Tuesday and told him I wanted it off, all off, he was unfazed. “You see, um, it’s like this,” I half-spoke, half-whispered awkwardly. “I’ve been diagnosed with, um, cancer and the chemo means it’s all coming out. I figured I might as well get in early.”

Ever the cool professional, Tony sat me in the chair and draped me theatrically in a black smock. He reached for the clippers – this would be a number 1 cut – and got to work. Within minutes the salt-and-pepper (mostly pepper) locks from my head had gathered on my lap in the smock and my head’s full roundness was on display, with only a thin layer of hair remaining on top. When it came to shaving, I warned of the dangers of a blade given the blood-thinner I’d been taking, so instead Tony gave me a designer stubble look with an electric shaver. I told Tony it would probably be a while before I was back to visit. He said that when I was ready he had a shampoo I should try that was often used by cancer patients after chemo. Clearly I wasn’t the first.

I headed out the door and ran my hand over my shaven scalp. Bliss. Most people know the pleasure of running a hand over a freshly shaven head, but only those who have had the cut know the pleasure that comes to the head as well. Maybe this will be my permanent look, for summer at least, many years after the chemo has disappeared into the long-distant past of my personal history.

The decision to get my head shaved came the night before, when I was massaging some shampoo into my then-overgrown hair. After working the lather for a while I looked at my hands and saw some tufts had come out. I reached up again and tugged. The chemo drugs, nearly two weeks after I started treatment, were working their magic on my follicles. As I washed out the shampoo I wondered whether I wanted to let it fall out on its own time, but the hairs clogging the drain quickly illustrated the folly of that idea. Instead I would get ahead of the game and pay my man Tony a visit the next day.

As it happens the past week has played out rather well. As everyone from Bob Dylan to Paul Kelly has noted, they say the darkest hour is right before the dawn. So perhaps I shouldn’t be surprised that the medically complicated angst of a week earlier has been followed by a few cracks of sunlight.
There will, no doubt, still be dark periods ahead, but for now at least things are looking better.

The big development on the personal medical front was the installation of a new line to deliver the chemo treatment. To recap, a few weeks earlier I had a PICC line (peripherally inserted central catheter) installed in my left arm – basically it was a thin tube that exited the body at my inside elbow and then ran up a vein in my arm before turning a corner in the shoulder to end near the superior vena cava, a vein of the heart. While the chemo drugs the first round were successfully delivered via this line, it led to blood clots in the upper arm. As soon as the chemo drugs were in, the line was removed.

Debate raged among the cancer doctors and nurses I saw for the week that followed on just where would be the best place to install a new line. It turns out that specialists in this field have strong views on the merits of different locations, and different technologies. Some suggested we try again with a PICC line in the left arm, while others thought installing one in the right arm was a safer bet. Others thought I’d be better suited to a central catheter close to the heart with a tube that hangs down on the chest, and others again even suggested a Port-a-cath, which sits under the skin, sometimes for years at a stretch. (Chemocare offers a good overview of the options for intravenous treatment.)

But ultimately the doctors opted for a more unusual approach. Given my propensity for blood clots and the fact my tumour was in my mediastinum, limiting access to the superior vena cava, installing a line in the upper part of my body was just too risky. Instead, the line would be installed in the lower part of my body and deliver the chemo drugs to the SVC’s chip-on-its-shoulder counterpart, the inferior vena cava. This large vein carries de-oxygenated blood from the lower body to the heart, and extends all the way down to lumber vertebrae near the pelvis.

The technical name for what I was having installed was a tunnelled central venous catheter using the femoral line. In practice it means installing a tube that exits my body a bit below the belly button, then inside the body extends south to the groin before curving around to connect with the IVC. Under the skin, a couple of centimetres from the exit site, a cuff in the line has been created, around which scar tissue will grow to hold it more securely in place. Outside the body the tube extends for about 10 centimetres, part way along splitting into two parts (one to deliver chemo drugs, the other to take blood) and these are each capped with plastic devices that seal the ends. The procedure for getting this thing installed it not pleasant, but the local anaesthetic at the site and a mild sedative up top mean you hardly notice.

I later discovered that my procedure was one of the first to use a tunnelled catheter in the femoral line. Until recently, when patients were having a line installed in the lower half it would exit the body close to the site of the IVC, near the groin. This would mean the patient having, er, dangly bits near their dangly bits, creating a high risk of infection and making the delivery of the chemo drugs more challenging. Mine, however, was tunnelled, hence the much higher exit point, greatly reducing the risk of infection and making it far easy to administer the drugs. While a tunnelled device is pretty common for the top half, it’s a novelty for the bottom half. I do hope things go well for me and my
groin novelty.

So with my new line installed I am now ready for the next round of chemo starting on Wednesday. That’s when I’ll be hooked up to a portable CADD pump for five days as it slowly releases the drugs into the plastic cap, along the tube to the IVC, up to the heart and ultimately to my whole body.

The fatigue and other side effects will probably be more intense than they were the first time around, I’ve been warned. But at least I can run my hands along my shaved scalp as a distraction.

Monday, November 09, 2015

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.

Thursday, November 05, 2015

Reasons to be grateful

I'm writing on the sixth day of an unscheduled hospital stay, so clearly treatment has got off to a rocky start. I'll write more about that another time, but for this post I want to focus on some of the positive things that have captured my imagination since the diagnosis.

If you ever doubt that you're part of a community, tell the world you have cancer and see what response you get.

Since I shared my news I've been filled with gratitude for the people, institutions and science that have given me such hope for the future. It is hard not to appreciate the privilege of which you benefit when you experience so many things fall into place so effortlessly to support a person suddenly in need.

When I was diagnosed a few weeks ago I wasn't sent home to die in dignity. Instead I was given the expertise of world-class professionals, access to state-of-the-art medical science, fantastic offers of support from family, friends and colleagues and an overwhelming confidence that Things Will Be Okay.

With this in mind, I want to take this post to celebrate the amazing things that have become apparent to me since the diagnosis. I'm not the mawkish type, but some things are just worth sharing with the world.

My gratefulness starts with those closest to me, who did all they could to be by my side. To step along this uncertain path on my own would be very lonely, so to do so with other people makes it so much more bearable. The emotional support is profound, but so to is the practical support to get me to appointments, keep track of the medications, sort out paperwork, eat decent meals and prepare the house for the changes that come with being cytotoxic. Knowing these things are under control gives me the peace of mind to focus on returning to health.

Then there are the messages of support from people far and wide, once I shared word of my situation. One of the silver linings of the dark cloud of this damn experience is that I have reconnected with some people I haven't spoken to in years. Many people have offered their own personal experiences of cancer, with uplifting stories of spirited battles and successful recovery. Others have shared stories where ultimately the patient lost the struggle. Those stories are tougher to hear but still I am glad I did. I've never sought to shield myself from unpalatable truths and don't intend to start now.

My workplace has gone above and beyond its obligations, giving me the flexibility I need to focus on my health while also giving me the sense of purpose that comes with remaining connected to a larger project. While it is not a large organisation the great people that they are left me without any doubt that I would be looked after. The sense of security was a great weight off my mind. Not being a breadwinner for others has left me with one fewer thing to fear. But for those in my plight with other mouths to feed and no source of income but their own blood and sweat, the despair must be all the greater. I am thankful for the support that comes with being part of an organisation with the capacity to help one of their number.

The diagnosis triggered a sophisticated institutional response that was truly remarkable. Once I was diagnosed with cancer I was quickly connected with the Canberra Region Cancer Centre that was part of the hospital in which I sat. From there my hand has been held every step of the way with care and compassion. I have been given the information I need to understand my condition, the practical guidance to appreciate the changes this will mean for my life and the psychological support to unburden myself in a safe space. 

The small acts of kindness from volunteers at the Cancer Centre and beyond are invaluable - the tea and coffee cart circulating the floor of the clinic, complete with Milo; the foot massages for gnarly, weathered patients' feet; the financial support for patients and their families doing it tough. 

The army of doctors and other medicos fighting for me has been humbling. Once we knew just what we were facing the docs were ready with the prescription. My lymphoma is being treated with a regimen of drugs known as dose-adjusted R-EPOCH. Essentially it's a mix of drugs delivered intravenously for five days at a stretch - six to eight rounds at three-weekly intervals. All up, it will be about half a year. Alongside the drugs come a series of injections and oral meds to take the edge off the side-effects, which can be devastating.

For the individual patient this is all a shock. But for the oncology professional this is daily life. With incredible emotional resilience these doctors deal with the cases before them, dispensing advice, drugs and reassurance as required. A complex hierarchy means the big decisions are made by those with experience, often as part of a collaborative process, while those beneath them make the daily clinical decisions. For the patient like me on the frontline it delivers the best of all worlds - continuity of care coupled with elite expertise.

Over time I'll get to know the doctors and nurses and other medicos at the Cancer Centre who are guiding me through this. But my initial observation is that they are incredible people who bring together a great awareness of the complexities of treatment with great warmth for the individual in their care. The clinical decisions they are making often involve fine judgement calls and rely knowledge that comes with experience. But the delivery of care is friendly and personable, recognising the needs and frailties of the person before them. Few people embody these characteristics, and so to be in the care of so many of them is a great joy.

It is comforting knowing that I am treading a well-worn path, and that while my cancer may not be common, it is also not too rare. I am the beneficiary of those who came before me - the researchers, doctors and patients who have each taken us an increment closer to managing the disease. Many people are fixated on cancer breakthroughs but instead we should celebrate the small improvements - the better-targeted drug, the better-abated side-effect, the more convenient delivery mechanism. Collectively each of these make the life of a patient so much better.

And all this is available at almost no cost to me as a patient. Much of it is covered by Medicare and the Pharmaceutical Benefits Scheme, though the hospital stays are paid for by the private health insurance I have contributed to for about a decade. Given none of us being treated for cancer sought our plight, and few made lifestyle decisions that contributed to our circumstances, it seems fitting that care would be an extension of the welfare state as a form of social insurance. The idea that I should have equal treatment to my neighbour seems only fair (although clearly international equity is far more elusive.) The wisdom of policy-makers allowing all of us to access world-class care is worth celebrating. And while I'm at it, thanks taxpayers - I promise you I'll make it worth your while to get me healthy again.

Even in the early stages of my treatment not everything has gone my way (might be more on that later). But I have every reason to be thankful that I'm battling the disease at this time, in this place and with these people by my side. I am truly lucky.