Episode 8: Carry that Weight

My job includes fighting bushfires. I have been flown by helicopter into wilderness areas to spend the day making fire control lines with the wonderful rakehoe – a heavy duty combination rake and hoe tool. Every year I have to prove my fitness. Every two years this includes a full medical. My medical in 2009 discovered a lump in my guts.  It turned out to be my spleen swollen with mutant white blood cells. My cancer had been discovered.

Last week I had my first routine work medical since my diagnosis. No lumps this time, I’m glad to say. The report was good although I’m not allowed to work directly on the fire line this season (not having to spend twelve or more hours on a rakehoe is fine by me).  

Following the okay medical report is the fitness assessment. This involves hiking 3.22 km with an 11.3 kg pack within 30 minutes. While it isn’t an overly arduous test, the pace is brisk and the weight is noticeable and my legs started feeling it on about lap two of the seven laps around the local footy oval.  Green Day blasting on my ipod allowed me to keep up the required speed (I did start with some Ralph Towner, a favourite jazz–classical guitarist, but the idiosyncratic time signatures of his music didn’t help). 

I managed the distance with time to spare and was feeling pretty good with myself. The day was warm – quite muggy – and an all morning meeting that dragged into the afternoon left me drowsy. I wandered home early to rest and was soon completely flaked on the bed. I was amazed at just how zonked I was. I was annoyed that proving my fitness proved by undoing. I would have tried some more Green Day to revitalise me but the ipod was too far away on the bedside table and now weighed at least thirty kilo so lifting it would have been impossible. I slept.

My tiredness pisses me off. It is so complete, so overpowering that I am not game to plan on doing anything much in the afternoons. But still I try. I am not going to let this beast beat me.

... and relax

Distress or de-stress? Here is a quick pointer to some of my psychological de-tox programs.

Hiking – as described in my other blog http://ian-folly.blogspot.com/. It is always wonderful to just walk through the bush with the wind in your hair and the rain soaking through your clothes. My wife doesn’t like camping but I love waking up in a small tent miles from anywhere; preferably miles from others as well.

Music – My guitar is one of my favourite companions. I started as a teenager and have never stopped. Sadly I can’t sing – well, not in tune anyway – but I’m learning to not let that get in the way. Every Tuesday night I will be strumming my guitar or mandolin or ukulele (damn ukes are breeding like rabbits these days) with few like-minded folk – and singing, accidently hitting the right note from time to time. There is a saying that you should sing like no-one is listening, so I do.  Not being able to sing led me to instrumental guitar music and I like to strum and pick and compose. Here is a sample of a short piece I wrote some years ago now but still like to play.

Photography – Back in year nine at high school we were entrusted with a Pentax SLR and a role of black and white film. The proviso was that we try to do something a bit different. We were then allowed to roam the school and the nearby streets.  Maybe not the streets, but we did anyway, small gangs of local youth armed with cameras. We experimented with the cameras and in the dark room, trying various effects. I have loved it ever since

Here is a link to a YouTube clip of a hike – photos and music by me. I took over a hundred photos on that hike but there are only two or three that I find really worthwhile, the rest filler for the clip, others now sitting on a hard disk but deserving nothing more than deletion.

It is vital to detox your brain from the stresses that we face.  Forget who is listening or watching or what they are thinking. If they have a problem, well, it is their problem, not yours.

Episode 7 Stress ...

It was a stinking hot morning, the wind howling and the air feeling brittle, ready to burst. The morning newspaper ran an article about it being the “Worst Day Ever” with warnings to stay indoors if possible, stay cool. We walked the dog early to avoid the worst of the heat.

Around lunchtime the call came, a fire had started and so I had to go to work. The office was busy in preparation for the day but a colleague and I were being sent elsewhere – westwards an hour’s drive – to help out.

We arrived around two thirty, heading towards a huge plume of smoke as we drove down the freeway. The control centre was chaos as we tried to get a handle on the situation – where was the fire, how big, what was it doing, what were our options. Information was scant.

About four o’clock word came through that another fire had started closer to home.

The day was a blur of hurried conversations and messages and reports and scrambling for resources to do our job.  By ten that night we were knocked off so we could rest up for tomorrow when the battle would continue. The night crew took over.

At midnight I had a call from my wife. The town was blacked out and filled with smoke. On the radio she had heard warnings that the fire was approaching the town and that residents should take precautions. She spent the next hours filling buckets, getting brooms and mops ready to put out any stray embers that may fall. Meanwhile, I tried to sleep in a motel room many miles away.

Over the coming days I continued the fight, talking to my wife back home on the phone and my daughter in Melbourne. Nine days later our fire was over, running into the one closer to home, which was still burning. I could go home.  

Over 120 people had died.

Back home, I learnt about the extent of the local fire. Friends had lost homes. More lives had been lost. A township was destroyed. Still the warnings came as further bad days loomed. We set up drums and bins of water and mops and hoses and sprinklers around our house. Calls were made to my daughter, who was seeing the news on the television and hearing rumours from friends.

Weeks passed before the fire was over. Months have turned into years as the recovery progresses. Last week, at a birthday party, talking to a woman that I have only met once or twice before there were still tears falling for all that had happened.

Following the fires came the investigation – a Royal Commission.  Statements had to be prepared, reliving that first day when so many died. Preparing the statement took weeks with visits to lawyers and advisors and second, third and fourth drafts. The Commission itself lasted an eternity.

Now, some two and a half years later there is a legal action against the power company who owned the cable that fell in the winds that day and started the fire, and against the fire fighters and the police.

I don’t want further conversations with lawyers; I don’t want to relive the day over and over again. I have been through that day many times in my head, wondering what would have made a difference. Given pending legal action I don’t suppose I can discuss it here but it is a day that won’t go away – ever.

In the middle of all that I was diagnosed. There isn’t a known cause of CML. Stress has been mentioned as an agent for making CML– or any cancer – worse and may be a possible cause. Without any real evidence to back it up, I believe that the stress of Black Saturday and all that followed was a factor in my disease developing. I may be wrong – it could be entirely coincidence and not related at all. I also believe that stress will hinder my recovery. I know it won’t help it!

So yoga, writing, music, reading, hiking, being with my family, have become all the more important to me.

And a holiday; it is time for a holiday.

Episode 6: Living in the mutants’ regime

It has been just over a year now since the mutant invasion was discovered. I celebrated the anniversary with a bone marrow biopsy to see how many of the mutant beasts were still kicking around. Their numbers have dropped but they are still there and still quite effective in doing what they do.

The preferred method for the mutants to let me know they are still around is the baseball bat*. Some nights they pound my legs so that when I wake up my thighs and calves ache.  Sometimes, they take the bat to my hands and fingers.  The overall sensation is that I’ve just finished four quarters against Barry Hall. (For those who don’t follow Aussie rules, substitute thuggish player from your football code of choice). 

They also manage to whack me over the back of the head with the bat every so often, imparting a fatigue that is hard to describe. As you would expect with a baseball bat to the head, it happens suddenly. It is less like fatigue and more like some form of quick onset concussion. (Or was it Barry Hall again?) The effect is to send me to bed to sleep for an hour or so.

Cancer zaps you as a large part of your energy is going into producing the cancer. The drugs then zap the cancer. I think the zapping takes place in the bones, in the marrow, and that is why the bones hurt. I can report that those bits of me without bones generally feel okay.

Apart from that I seemed to have been spared (so far) many of the side effects I have read about or heard about from others – rashes, hot flushes, vertigo, becoming more prone to car sickness … There are some side effects that linger in the back of your mind.  Those related to heart disease sit in this category. A very small number of people have had heart failure leading to on-going death. Regular ECGs show that this isn’t an issue for me at present.

I know of people who have other diseases – non-life threatening in most cases – that, to me, have a much bigger effect on their quality of life. I can still work and I am fortunate to have an employer who will allow me time off whenever I need it. I can still go hiking and ski-ing and camping. My trips are modified a little (my Easter hike to The Fainters didn’t quite make it to all the way to The Fainters, for example, but I still managed a couple of days toting a pack around the Bogong High Plains - here's a link to some pics from that hike Hike to The Fainters - almost if you are interested).

So I continue to live pretty much as I did before but with sore legs and an occasional afternoon nap. I get sympathy because I have cancer and kind of feel guilty sometimes that maybe I should be a bit sicker than I am. I live with the sword of ‘blast phase’ hanging over my head and trust in the latest drugs to keep it from falling. I have the inconvenience of medical appointments and a weird medication regime involving fasting at stupid times of the day, like when everyone else is off to the pub for a beer.

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* Being an Australian, you would think that a cricket bat would be a more suitable weapon than a baseball bat. However, using a cricket bat in such a way is, well, just not cricket. For those who fail to understand this, I suggest you get yourself to Melbourne for an Australian Christmas of roast meat and vegies (despite the temperature being a zillion degrees) followed, of course, with backyard cricket. Boxing Day should then be spent at the MCG for sunburn and beer watching day one of the Boxing Day test.

Episode 5: The news spreads

I live in a small town, a couple of thousand people nestled together in a fog filled valley. It is the type of place where you smile and say hello to everyone; chances are they are related to, a mate of, or work with someone you know. While the local newspaper reports on cattle prices and footy scores, what’s really happening is learnt at the pub or over a cup of coffee.

Some ailments are publicly acceptable topics for conversation. A broken bone, the flu, or a knee reconstruction can be discussed. Mental health is generally taboo – a conversation regarding your bipolar disorder is unlikely to be comfortable. Cancer seems to fall in the middle. People will talk about it but for some there is awkwardness.

Advice from the Leukaemia Foundation is that “it is usually better to be as honest and straightforward as you can … Keeping a diagnosis of cancer a secret for a long time is exhausting and in most cases impossible.”  So I never tried to keep it a secret. When I was diagnosed I mentioned it to two or three people at most. Soon I had friends knocking on my door to see how I was.

It’s just not possible to be away from work and sport and everything else for a few weeks without any explanation – especially in a small town where the people you play tennis with are people you work with or your wife’s friend’s husband or have some other connection. Taking a month or so off without explanation would probably have led to some interesting rumours.

Having the news in the public domain has allowed others to open up to me. I have shared stories of cancers and other weird diseases. It has helped.

It’s been over twelve months now and there are still those who don’t know. When I walk down the street and people ask “How are you?” I’m not sure what they are asking and seek little clues rather than blurt out “I’m still having chemo but it seems to be going well and … oh … you didn’t know.”  I’m thinking I should update my Facebook status to “Not dead yet (wink, wink)”.

Episode 4: Death and music

My father-in-law passed away last month. He was 90, had a failing heart, diabetes and a range of other health issues. He didn’t want to die, or, more correctly, he wanted to go on living. He had his children and grandchildren that he didn’t want to leave. His was still writing jazz tunes and playing music and there was still more music to be written and played. There were books to be read. There were things to do. 

We don’t think about death that much when we are young or even when we are older. My father-in-law didn’t seem to. He hadn’t put any arrangements in place for his funeral, had left no indication of what kind of service he wanted. It is amazing how many little things needed to be decided – headstones, caskets, plots to be selected, music to be played. And all the time we were wondering ‘What would he like?”

Like her father, my wife is also a musician. She hasn’t felt much like playing music or singing since his death, such is her sadness.

I too am sad. Although I have never lost a parent or a child or a sibling and so I guess can only imagine the pain she is feeling, I also feel pain at his passing.

My disease puts a focus on death. Cancer sufferers talk about survival rates and try to forget that death is always one of the possible outcomes. Like my father-in-law, I also haven’t made any arrangements apart from a Will, which was put together long before I was diagnosed.  My wife and I have discussed funerals but the reality of dying isn’t there deep enough for us to do anything about it. So, we haven’t bought a plot or designed headstones or selected the music to be played or anything like that.

I think the avoidance comes from an innate optimism that we can work through all the ‘stuff’ life throws up and come out the other side, maybe with a few bruises but otherwise okay.  At least, most of the time I feel optimistic. There are still times when the whole thing seems too much and the dog is scratching at the door – little scenarios fill my mind and it becomes hard to put the kettle on and start another day.

My father-in-law’s band mates played at his funeral – his music; songs he had penned over the years. People listened and smiled. As I listened I remembered him at our place, working on some melody at the piano or sitting at the kitchen table discussing augmented fifths or writing out chord diagrams or bass runs for me to try. 

I want to be like him. I want to keep playing music, writing songs, being with my family, being out in the world, living.


Here's a link to me jamming on my father-in-law's double bass and a classical guitar.

Epside 3: Evil Phil

The cells that make up our bodies are just like us – they grow up, get jobs, have kids. The jobs vary from making hair or moving muscle to oxygen transport. Unlike us, they follow in their parent’s footsteps – if your parent was in the toenail manufacturing business then you will be too. As the generations pass, and as we get older, slight mishaps occur. A cell might still make hair, but it won’t be a nice shiny black hair but a bit grey. Some of these mishaps can have nasty consequences.

Cancer is one such consequence. The cell cycle goes wrong. Cells divide, but don’t get jobs or do their jobs properly. And they divide again and again and again.

With Chronic Myloid Leukaemia (CML), the cells that should be growing up into the myloid variety of white blood cells don’t. Instead they divide lots and your white blood cell count goes up. It takes a bit of energy to make so many cells so you feel tired. Your body tries to get rid of them and your spleen, whose job it is to remove trash from the blood, gets enlarged.

The actual CML mishap usually relates to a particular chromosome mutation creating the “Philadelphia Chromosome” – Evil Phil – formed when part of chromosome 9 (the abl gene) breaks off and attaches itself to part of chromosome 22 (the bcr gene).

I have Evil Phil in my body. Evil Phil’s signature bcr-abl (bee-sea-are-able) gene was measured at over 200 when I was first diagnosed. I’m not sure what it was 200 of, but it was not a good number.  It is now down to under 0.5 and has been bouncing around below one since February.  The aim is to get it to al level where it is undetectable.

Every month or so I travel down to hospital for another blood test to measure Evil Phil and a few other markers of my progress. Occasionally it is a bone marrow sample and I am soon going to celebrate one year since my treatment began with my third bone marrow biopsy.

The hardest part isn’t the needles extracting blood, or the big needle extracting bone marrow (that process is simple – I get zombied out and then it’s all over), it’s worrying about what this month’s number will be.

I have had the numbers go the wrong way. It was quite a shock. I was beginning to believe that all was well, the treatment was doing all it was meant to and the danger was over. Then the result came in with a bounce. Evil Phil was fighting back, maybe throwing another mutation into the mix? An analysis showed that it wasn’t a new mutation; just the drug losing effectiveness. Because I am on a trial, I was able to change medication and my numbers started dropping again.

Although my last test showed a small bounce – from 0.16 to 0.43 – my haematologist is happy with my progress so I wait for the next test and the next set of numbers to tell me what Evil Phil is up to.  

An electrospectromicrograph of the Philadelphia Chromosome, or Evil Phil.

Episode 2: Into the black world

Hospitals are big places. Rooms and corridors and “Follow the blue line from the elevator on level 3”. And you don’t want to go inside but you know that you have to.

Australian Olympian Raelene Boyle recently described her ordeal with breast cancer as like stepping into a black world and not knowing where she might come out. It is an apt description for taking those first steps into the hospital. Despite the bright flouro lights it feels bleak, I felt bleak, worrying about what was happening and what could happen, all the unknown possibilities.

The first thing I learnt was that I had to surrender. I had picked up from the doctors and the net that there was a wonder drug called Glivec that would probably cure me, sort of.  I wanted it now. Please, can we start treatment now? I read in forums about people going on to the drug pretty much the day they were diagnosed, so why not me? However, there were further tests needed to make sure I had the Philadelphia Chromosome. The doctor would decide what direction I would proceed in and it wasn’t Glivec; not just yet. Hydroxyurea first.

I had the script and went to the hospital pharmacy to have it filled. The pharmacist was reluctant. Had the specialist told me such-and-such, or arranged for a whatsit procedure? He had written the script, hadn’t he? He was a doctor and that’s what doctors are trained to do. Surely he had ticked all the boxes. And how would I know if he hadn’t?  I was stuck, unable to answer the pharmacists questions and wanting to scream at him “Ask him your bloody self!”

The following weeks include a bone marrow biopsy. Deep breathing and meditation were needed as the needle went into the back of my hand. Trust the registrar; it was all I could do. There was no other option.

The worst was lying in bed one night, discussing the disease and the treatment with my wife. “We were meant to grow old together”, she said. Those words cut deeper than anything else I have experienced with this disease before or since. I suddenly realised how all the plans we make can be so easily lost and that we have no power whatsoever to do anything about it.

I did have a future planned and it did include growing old with my wife. It included watching my children growing up. It included a whole range of dreams that I didn’t even know about. It still does.  I am not going to let them be snuffed out into a black world.

Episode 1: Discovery of the mutant horde

It was April last year. I had started collapsing on my bed in the afternoons for a nanna nap  and thought that, at fifty, I must be getting old. Bugger! Maybe a course of multivitamins would help so I started taking a range of coloured pills to fix what I thought was ailing me. My sense of smell was a bit weird (although things still tasted okay).  I also found my fingers going numb, particularly walking to work on the cold mornings. That worried me as numb fingers make playing guitar a bit difficult. A couple of bruises on my leg didn’t really attract my attention.

I had a routine health check-up for work. The doctor feeling my abdomen declared that I must be constipated as he could feel a bit of a lump. He wrote me a letter to take to my family doctor, but I ignored his diagnosis – I knew I wasn’t constipated. The letter sat on my desk for about a month.

I had a cough that wouldn’t go away.  A raspy little cough that I put up with. It was only when colleagues started asking me to “Die quietly” that I thought that I should see someone about it. My doctor examined me and couldn’t find anything.  As an afterthought, I handed over the letter which I luckily remembered to take with me. My doctor read the letter, had a feel of my guts and suggested I have a blood test – preferably that afternoon – just to rule out a few possibilities.

A few days later I received a call asking me to come down the surgery to discuss the results of the blood test – now! My white cell count was 224 – about twenty times what it should be. A few other things in my blood film pointed to chronic myeloid leukaemia (CML) aka chronic myelogenous leukaemia. The doctor told me a heap of other stuff but not much of it sank in: he had never treated anyone with CML before but apparently the survival rate has improved a lot and is now quite good, although he added he didn’t know what ‘quite good’ meant. He made me an appointment at the hospital for the next day and I would learn more from an expert in the field. He suggested I drink lots of water because with a white cell count that high my blood would be quite thick and stodgy and could just clog up in my brain and that wasn’t a good thing to have happen. He also suggested that, if possible, I shouldn’t Google leukaemia just yet.

I didn’t get much sleep that night.  My wife and I sat the kids down and explained what we knew and that the doctor was positive I would do okay. And we cried a lot.

The hospital the next day was a tad surreal. My referral was written on a  scrap of paper that the nurse on the desk didn’t seem willing to accept. I told her that I was only diagnosed yesterday and an appointment had been made and I had just driven two hours to be there and wasn’t going away. Eventually I saw the haematologist and had a big discussion about CML and treatments. More blood was taken for further testing. At the end of a long day I had a prescription for a course of hydroxyurea (which the pharmacist seemed reluctant to fill at first but eventually handed over along with some dire warnings about taking the drug), had signed up for a clinical trial and made some more appointments for stuff. And more information that I didn’t quite know what to do with, and lots of questions that I could ask but didn’t because I wasn’t sure I’d really understand or absorb the answers, like just what has Philadelphia got to do with anything?

The start of an adventure – whether I want one or not.