There is a crack in everything

We’ve been on holiday in the USA for the past 3 weeks. It’s the first time in 20 months that I’ve had a break from treatment and it has been a chance to start to feel normal again and recharge the batteries. My skin has just now started to get back to it’s pre-Erbitux self. Only mild itching and burning, and the bleeding has stopped pretty much completely.

I had bloods taken yesterday and I got my results back just a few minutes ago.

It isn’t good.

My markers have tripled while we were away and all are now out of “safe” zones, including liver enzymes. This makes the third time I’ve had them come down only to go back up and have to start all over again. I have a meeting with my Oncologist on Friday and I’m guessing he will order more CT scans to determine whether or not the increase in my markers is due to the cancer spreading elsewhere or just due to activity in the liver. Either way it’s probably going to mean more chemo, a liver resection or more radiation…. or all three. More chemo means more Erbitux… and back to mutant status. More burning, more itching and more bleeding. It also means there’s no way they will consider reversing my stoma for the time being. *sigh*

I don’t really have anymore to add right now. I was driving along pretty happily but it appears I have run over some nails on the road…. and all the air has gone out of my tires.

I’ll let you know more when I do.

Please pray.

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…you just might get it.

It’s been a pretty overwhelming week.

I got a phone call on Tuesday morning, about 8am, from a man I have had the pleasure of coming to know over the past few months. He’s been so supportive of me and my attempts to get our government to list Erbitux on the Pharmaceutical Benefits Scheme. He told me he didn’t want to get my hopes up but he’d heard a rumour that today might bring the good news we’d been waiting for.

Sure enough, at 9am he called me back. The federal government had committed $200 million dollars to subsidise Erbitux and a number of other drugs for the thousands of Australians in desperate need of them.

Complete about face.

As of September 1st, 2011, Erbitux will cost $35.50 a week instead of $2,000 a week.

The cynics and the critics might say all they hear is wasted money, but I hear hope. I hear the collective sigh of relief from 2,000 Australians who could not afford Erbitux, who could not afford to fight for their lives. People just. like. me. Giving it all they’ve got and then some.

It was all over the news, how that guy that had cancer that made that video that was on Oprah who had been campaigning to get his drug on the PBS had…. won. And there were photo’s and interviews and front pages and lots of smiles…. and some tears, too.

But you need to know that while it may have been my face on the TV and in the newspapers, it wasn’t just because of me that all this happened. There are people that would probably not think twice about seeking recognition for the role they played, and that’s exactly why they deserve it.

That man I told you about earlier? Chris Reason, Channel 7 journalist. From the beginning, took my voice and made it louder. I trust him. He listened.

The Sunrise program on 7, The Today Show on 9, Mornings with Kerry Anne Kennerley, 6pm with George Negus, Alan Jones at Radio 2GB… the man whose tongue can start fires, Jason Morrison, Radio 2UE, the crew at Hope 103.2fm, The Manly Daily, The Sydney Morning Herald, and of course, my mates on the Grill Team at Triple M…. the people that started this wild ride by passing my request on to Hugh Jackman.

Carolyn Coulton, who guided me through the minefield with grace and outstanding professionalism…. and Russel Crowe…. for words whispered in my ear late one night before Christmas. When Maximus speaks… you listen.

Oprah… who, by taking the time to care about us, gave me a platform to stand on whereby I could be taken seriously by the decision makers of our nation.

And… all of you… who support me here with letters of kindness and encouragement. Not a day goes by that I don’t look up and see the outstretched arm of a stranger, lifting me out of the mud with the kindest of words, the most compassionate of hearts. All of you who added your own voice to mine…. thank you.

And to Heaven…. to my God…. who has brought me here for such a time as this for reasons I cannot possibly begin to understand…. be it unto me according to your will.

I know what it means to say those words… and I am not afraid.

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Death has been shadowing me the last few weeks.

I see him, not in my mind’s eye… not in a vision… but with my eyes open, standing in my doorway at night. He just stares, silently, and doesn’t move. He looks like you might imagine… a Death Eater from Harry Potter… a Ring Wraith from Lord of the Rings…. or as the typical heavy metal album or biker tattoo might depict him. Or a combination of all of them.

I’m sure you’re hearing the sound of marbles rolling around on the floor…. but I know what I see.

My markers are rising again.

My CA19.9′s are staying put around the 11-12 mark but my CEA’s have risen each blood test for the past 4 weeks.

158 –> 178 –> 184 –> 209… they’re trending upwards again. Of course there could be a whole bunch of reasons why. Maybe the recent bout of shingles has had something to do with it. They’re still hanging around and are still quite painful. Maybe my body just can’t fight them both.

My body…. aches. Every day. It burns. It itches. It hurts.

The one thing that can bring all the burning and itching under control, the dexamphetamine, will likely destroy any sanity I have left if I take it in the doses needed to suppress the skin inflammation caused by the Erbitux. It will also likely destroy my family in the process by turning me into a permanent Mr. Hyde, from David Banner into the not-so-incredible Hulk…. so it’s not an option.

And every night… Death comes to my doorway and stares at me. I know he’s not allowed any closer than the doorway to our room but it still pisses me off that he’s in my house at all.

And I’m growing so weary of fighting….

Fighting my illness.

Fighting the side effects.

Fighting stupid, arrogant Christians who tell me I’m doing “jack-all for the kingdom of God”.

Fighting the government to release Erbitux onto the PBS.

Fighting my own inner demons.

So tired.

“I’m not gonna write about the way things have been
‘Cause lately they haven’t been so great.
I keep falling down, I keep giving in… I’m scared this is my fate.
If this is all that life would be, if this is all there was for me
I would not go on.

I’m not gonna lie about feeling fine and knowing everything’s okay.
I’ve just got to believe that this hope inside will lead me to a better place.
With every tear that I cry I cling to the hope that will not die
He won’t leave me here.

I will not lay down…. this won’t be my end.”

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Yesterday was chemo round 34. It always hits me later in the evening, around 7pm. Heavy duty tiredness, to the point where keeping my eyes open is a major effort. I imagine my head like the top of a tree in a storm… moving back and forth erratically, but my body remains motionless. Just the top being pushed around at will. But there’s minimal nausea, which is nice.

The Good:

So far things are going along as they should. I’m still receiving treatment, Erbitux weekly. I still have cancer but I’m not dying. It’s under control… as much as the medical fraternity and modern pharmaceuticals can control it anyway. The Dexamphetamine they give me during the infusion suppresses the majority of the nausea and also makes my skin manageable for the first day or so afterwards. Through the process of elimination I’ve determined that it’s the Dex that settles it down. I mentioned this to my Oncologist and he was happy to prescribe a daily dose in tablet form.

My liver enzyme markers are all down, some back within ‘normal’ tolerances, which is very good. Considering my liver is the only place the cancer still has a hold this is a good sign. My liver is functioning perfectly. My CA19.9 markers are holding steady at 11.1, well within normal, and my CEA markers are bouncing around week to week between 143 and the latest round of 174, which is still good compared to when they were over 4,000. So instead of being four thousand times the safe limit I am now only 174 times the safe limit. It represents a decrease of about 96% since we started on the Erbitux. Unfortunately, instead of decreases of hundreds of points per round, we’re now only seeing decreases in the 5 to 10 point range. Not bad in and of itself, the numbers are still trending in the right direction, but I have a feeling the last 4% is going to be a very hard fought battle. Assuming the math stays the same and it drops by 5 points each time we’re still looking at another 30 or so rounds before I’m safe. Fifteen if it goes down in multiples of ten. *sigh*

The Bad:

I’m still having treatment weekly. It’s really starting to get me down. There just doesn’t seem to be any end in sight. We’re locked firmly in that dreaded holding pattern with very little room to move. All I can do is keep showing up for treatment, keep looking for new ways to manage the pain and irritation on my skin and just… keep knocking on heaven’s door. I’m feeling particularly low this week, and last week, as I have managed to pick up a case of shingles. Apparently once you have chicken pox a form of the virus stays in your body for life, hiding itself in the nerve ends in your spine. It usually only manifests itself if the body is run down or the immune system is less than stellar. I qualify on both counts. Shingles, as anyone who has had them will attest, is incredibly painful.

My Oncologist has offered me daily doses of Dex for my skin. The Dex really brings out the worst in me, more so after 18 months worth. Given that Mr Hyde spends far too much time in our house as it is already, I have refused the offer. I just can’t do it to Rach and the boys. As much as I desperately want relief from the burning and the itching and the pain…. I can’t do it. I don’t imagine for one second that any of this is anywhere near tolerable for Rachel. I’m not the man she married, that’s for sure. Just how bad it is for her I don’t quite know yet. Cody is starting to become aware in his own way that something isn’t quite right and the other night while putting Jakob to bed, he grabbed my face with both hands, pulled me in close so we were nose to nose, looked me in the eye and said “Yooouu…. Go. See. Da doctor.” Then he kissed me and rolled over.

So…. no Dex tablets.

The Ugly:

Me.

I hate having to look into the mirror. I see red, blotchy skin and swollen eyes. I see a torso covered in spots, a stomach with a stoma and colostomy bag, spotty arms and legs and feet with no feeling and a permanent sensation of pins and needles. I have never really been overly concerned with how I look. I think I gave up on that once I realised I was going bald, around the age of 20 or so. Nothing I could do about it so why fight it. At the time I was dating a girl who didn’t seem to mind (or at least she never told me if she did) and Rachel has never known me with hair… I’ve always  done the Peter Garret in the time she’s known me. In fact, I think she actually prefers me bald than with hair.

But my self image is under massive pressure. I really can’t stand to look at myself. I get looks walking down the street and never know if it’s because maybe someone has recognised me from Oprah or the various TV and print media stories or whether they’re looking at me in horror… like some kind of mutant. I fully expect the mutant response because that’s how I view myself. But… like I said, this is war and there are casualties along the way. I guess my ego needs a bullet or two.

Anyway… that’s where I’m at right now. I get distracted easily so my ability to uphold any kind of decent conversation is limited. This includes conversations with God. I get quite frustrated that I can’t sustain any kind of meaningful prayer with him, it really bugs me. But it’s times like this I just go back to the last thing he said to me….

“I am the LORD your God 
who takes hold of your right hand 
and says to you, Do not fear; 
I will help you.”

(Isaiah 41:13)

I know I’m still on his radar. So is Rachel. So is Cody. So is Jakob.

I firmly believe the time will come when I am safe from this disease. My healing has been sent… it’s travelling… and at the appointed time, I will arrive in the same place at the same time as my healing.

In the meantime…. it’s back into the trenches.

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We recently had a family holiday in New Zealand these past few weeks. Rachel and the boys headed over on a Sunday and I joined them the following Wednesday after another chemotherapy session. The boys love going to NZ as they get to see their two younger cousins as well as their Nana and Poppa and uncles and aunties. It’s also an incredibly valuable time for Rachel to recharge and just be in a familiar place with people who know her best.

We went down to a little beachside town called Onemana (pronounced Oh-Knee-Mah-Nah) which is near the town of Whangamata (pronounced Fung-Ah-Ma-Tah) for a weekend away with all of Rachel’s brothers and sister and their husbands and wives and kids. It was pretty crowded. Our little family stayed in the converted garage which is separated from the main house by a 20 foot walkway while everyone else stayed in the main house.

So after dinner one night it’s bedtime for Cody and Jakob. They say goodnight to everyone and we take them to our room where they watch a movie on the portable TV/DVD combo we bought for the times when we travel (soon to be replaced with an iPad). It doesn’t take long until both boys are crashed out and sleeping peacefully, usually, so we put them into bed, said our prayers and lay with them for a bit while they started to doze. After a while we headed back inside to join the rest of the gang… me first, then Rachel. As usual, one of us goes back in periodically to check on them to make sure everything is ok. It was my turn this time so off I went thinking everything would be fine.

It wasn’t.

Somehow, after trying to get back to the main house and deciding it was too dark and scary to walk the 20 feet between dwellings, both boys had locked themselves in the ensuite bathroom and were crying their little hearts out. When I got inside I found them standing, Cody up front and Jakob clinging to Cody’s leg, terrified and sobbing.

“Daddy, we couldn’t find you! We were lonely”, Cody sobbed. “Yeah”, Jakob replied through teary eyes. I knelt down in front of them and they ran into my arms, their little bodies heaving. I wrapped my arms around them and told them everything was alright now, Daddy was here. Cody again looked into my eyes and said: “We called out for you but you didn’t come. We were all alone”. And then it hit me…. and I started softly crying with them. I crumpled into them as much as they had crumpled into me. Rach came in right about then and we all hugged and explained to Mummy what had happened. I was still fighting tears as we climbed back into bed and rubbed their backs and played with their hair to settle them back down. We stayed with them until they fell asleep.

As the days since that moment have passed I have had something gnawing at my insides, like something just isn’t right. I’ve been playing the scene over and over in my head and the memory of their little faces, sad and afraid, upsets me deeply. And the other day it hit me.

Cody is incredibly intelligent and has a large vocabulary. He knows words and is very capable of expressing himself clearly in most situations. What has absolutely shaken me are the words he used to tell me what was wrong…. “we were lonely”…. “we couldn’t find you”…. “we were all alone”.

And I realised… this is what they will say if I die.

And the worst part is I won’t be able to put my arms around them and tell them that Daddy is here, it’s going to be alright… and we won’t have big family hugs where the boys are comforted and reassured that Mummy and Daddy love them very much and are here to protect them… and that will be the way it is for them for the rest of their lives. While I will pass instantly into eternity, where there is no sadness or pain or sorrow or fear, Cody, Jakob and Rachel will live out their days on earth, full and productive, but with a sadness buried deep inside them. Beautiful little boys, growing up into fine young men, without their father. Rachel forging on, without her husband and friend… and it kills me inside to think of it.

And as I sat down in the oncology ward to receive my 30th infusion yesterday, I again sat down with one purpose:

To fight.

Fighting for my life. Fighting for my wife and sons.

As I unbuttoned my shirt, as the 3/4 inch needle went into my port, as the saline went in and the blood came out, as the Erbitux made it’s way into my body where it was to do battle with my cancer, as the clock on the wall reminded me how long it all takes… every week… the fight.

Every second of burning, itching, and mutated skin…. the fight. Every damaged nerve ending… the fight. Every hour hunched over the toilet bowl, puking my guts out… the fight. Every scar, every incision… the fight. Every time I see Death standing in my bedroom doorway at night…. the fight.

John Mayer sings:

“Come out angels, come out ghosts
Come out darkness, bring everyone you know.
I’m not running and I’m not scared,
I am waiting and well prepared.

… I’m in the war of my life, at the core of my life
Got no choice but to fight ’til its done…. so fight on.”

And so I do… until the cancer is dead… or I am.

And there will be casualties along the way.

Because that’s how it is in a war.

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I’m tired, again. Really tired.

Physically, very slow. Mentally, dull and listless.

I just had my 29th chemo infusion and while the Erbitux is easy to cope with when compared to my original FOLFIRI/FOLFOX/Avastin regime, it’s still a hard slog. The Oxaliplatin from the FOLFOX infusions has left me with considerable nerve damage in my feet and toes. A drop in temperature of even only a few degrees is often enough to make standing or walking unbearable, and that’s assuming it wasn’t a cold day to start with. But I love a cold day because the cooler air is soothing on my head and torso. The rash from the Erbitux is subdued by cooler temperatures. The burning somehow bearable.

There’s no such thing as in-between when it comes to cancer. It’s cards down and guns drawn…. all in or you’re dead.

Rock, meet hard place.

And in all of this I am still trying to understand the why’s and the why not’s. So many things I just don’t understand.

Before cancer I was pretty ambitious… to a fault. I was driven but I was driving myself towards things that held no eternal value, no lasting satisfaction. I tolerated certain situations that took me away from my family and allowed my boundaries to be compromised. I tolerated certain people in the foolish belief that they might ‘open doors’ for my future, all the while knowing they were the kind of people I didn’t want to be like. All in the name of ‘success’. But cancer has stripped away the things inside me that sought to benefit only myself and my immediate family. These things I thought I could not do without…. now… cast aside on the road through the valley.

I see a lot of discarded things on this road. Things thrown away by people who have walked the road before me and have come to the same revelatory realisation. Our understanding of eternal things accelerated by our own imminent demise. The deepest cry for mercy bringing with it the deepest understanding.

To the human eye we become ‘victims’…. ‘sufferers’.

Weak.

Sick.

Sad.

Pitied.

We become nothing.

Our brokenness repulsive to those who have apparently got it all together. And yet… the more broken we become, the more cracks that appear, the more light that gets in.

I am nothing. I have always said this. This journey is not about me. It’s not to show you how strong I am, for my strength comes from God. It’s not to show you how great my faith is, for my faith is a gift from God. And it’s not to show you how courageous I am, for my courage comes from God… exactly at the time I need it. Anything you see in me that is good is not of my doing… it’s from Heaven. I’m not the well respected religious leader. I’m not the upstanding citizen. I’m not the guy that’s got it all together. I’m the tax collector in Luke 18 verse 9:

^“Two men went up to the Temple to pray, one a Pharisee, the other a tax man. The Pharisee posed and prayed like this: ‘Oh, God, I thank you that I am not like other people—robbers, crooks, adulterers, or, heaven forbid, like this tax man. I fast twice a week and tithe on all my income.’

¹³“Meanwhile the tax man, slumped in the shadows, his face in his hands, not daring to look up, said, ‘God, give mercy. Forgive me, a sinner.’”

 ¹⁴Jesus commented, “This tax man, not the other, went home made right with God. If you walk around with your nose in the air, you’re going to end up flat on your face, but if you’re content to be simply yourself, you will become more than yourself.”

You will become more than yourself….

Maybe I’m Superman…. or maybe I’m just on the receiving end of a mercy-full God’s gift.

I am constantly reminded of how broken I really am. My body doesn’t work the way it’s supposed to. It’s doing things it shouldn’t and is being subjected to ongoing brutality as we attempt to correct its behaviour. My mortality has never been more obvious and I am daily reminded that if God does not intervene in my situation I’m a dead man. And that’s just the physical brokenness. I could write page after page on my own frail humanity. But it’s what Christ offers me…. to fix it once and for all… that turns the liability into an asset. To replace my weakness with his strength. To offer himself in my place.

This journey from who I was to who I was born to be, this becoming, is not a path I would have willingly chosen for myself or for those who love me. Believe me, it’s painful. My body aches almost as much as my heart…  and whether or not it has been chosen for me is open to much debate. But it doesn’t matter. I’m being shaped, regardless. Thrown down onto the potter’s wheel as he digs his hands in and squeezes out the imperfections…. placed into the fire to seal the skilled handiwork. All the while having no idea what I’m supposed to be, what I’m becoming. Trusting in the one leading me…. trusting him for my very life.

“Nothing ever stays the same 
The wheel will always turn 
I feel the fire in the change 
But somehow it doesn’t burn 
Like a beggar blessed I stumble in the grace 
Reaching out my hand for what awaits

I am clay and I am water 
Falling forward in this order 
While the world spins ’round so fast 
Slowly I’m becoming who I am

I will live from my heart
And I will catch the lines of love as they come
Back to You I know they’ll lead
And into You I know I’ll lean”

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Right now, in Australia, the federal government is dragging it’s heels in relation to releasing the drug Erbitux onto the Pharmaceutical Benefits Scheme. The Pharmaceutical Benefits Advisory Committee and the board of Medicare have both signed off and given it the thumbs up and the government has (had) promised to release it to those who need it…. but they haven’t done it by the date they said they would and we’re not getting any answers as to when they intend to honour their promise.

Erbitux is working wonders in my body, I kid you not.

I have been on the drug for 8 weeks now (I had my 8th infusion yesterday) and today received my round 7 results. In just seven weeks my CEA markers have dropped from 4,100 to 234. My CA 19.9 markers have dropped from 113 to 13.9…. remembering that in the CA19.9 arena a “normal” person has a marker count of 37 and below. Each week my markers decrease by 25 to 50 percent. At a time when my markers were inexplicably climbing, Erbitux has sent them packing. Of course, keeping in mind the success of the bowel operation and the SIR spheres treatment but still… it’s producing incredible results. Erbitux needs to be, must be, available as a front line treatment option.

There are approximately 2,000 Australians that need Erbitux. My weekly treatment costs $2,000 to supply. All up, we need $30 million dollars a year to potentially bring this kind of result to many, many Australians at no cost to themselves.

The government has promised it but I need all of you to help remind them of their pledge to the cancer patients of Australia.

When I first started this journey my voice was small, quiet and helpless. Today my voice echo’s loudly around the world thanks to the prayers and support of everyone who visits the blog, countless prayer groups and churches around the world, the local media here in Australia, news outlets around the globe and, of course, Oprah.

Let me feel you, carry you higher
Watch our words spread hope like fire
Secret crowds rise up and gather
Hear your voices sing back louder

We can make a difference. One person plus one person plus one person…. all of us little people. I’m convinced of it.

If you have the time and the inclination please write a (polite) letter to the following people and let them know the people of Australia who are fighting cancer, their families and loved ones, all want and need Erbitux (Cetuximab) released onto the PBS.

Contact details for our Prime Minister, Health Minister and Treasurer are below:

The Hon Julia Gillard MP

Prime Minister

PO Box 6022
House of Representatives
Parliament House
Canberra ACT 2600

Tel: +61 (02) 6277 7700
Fax: +61 (02) 6273 4100

The Hon Nicola Roxon MP

Minister for Health and Ageing

PO Box 6022
House of Representatives
Parliament House
Canberra ACT 2600

Tel: +61 (02) 6277 7220
Fax: +61 (02) 6273 4146

The Hon Wayne Swan MP

Deputy Prime Minister; Treasurer

PO Box 6022
House of Representatives
Parliament House
Canberra ACT 2600

Tel: +61 (02) 6277 7340
Fax: +61 (02) 6273 3420

You can send it by mail but fax will be quicker.

Please, help if you can. The benefits I am receiving from this drug should be available to everyone who needs it. It’s not a miracle cure but it is really smart science and it works.

It works.

(btw… here is a recent news story on the issue. You can really see the rash, even though that day was a ‘good rash day’)

31 March 11 – Channel 7

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