Recovery

•October 4, 2011 • Leave a Comment

Tomorrow will be one week since the Spheres procedure. I knew I would need a certain amount of physical isolation for a few days and seeing as how it’s school holidays we decided Rachel and the boys should go to stay with her parents in New Zealand. That way they’re protected and I don’t have to move out of home.

They’re having a great time. It makes me very happy.

So I’m sitting/laying at home while the side effects take over. The pain I remember from the first time, the fever, the chills, the sweating that makes me have to change clothes multiple times in the middle of the night. But more than anything, the pain. I have good pain meds but still it pierces through. I feel the heat of the radiation on my skin. I feel bubbling, popping in my liver and at times the exhaustion is so bad I feel like someone has literally kicked my legs out from under me. I have had to steady myself against a wall a number of times while making the 20 foot walk from the lounge to my bed. It’s frightening.

But the physical pain is nothing this time. What’s really hurting is the not knowing again. The 3 month wait until we know how successful it has all been. And what worries me is that last time we suspended chemo while the radiation did it’s thing, which was a welcome break, the tumour in my bowel began to grow and of course we remember what happened at Christmas.

But the most painful thing of all is walking past the boy’s bedroom door and seeing their empty beds. Cody with his dinosaur blankets and Jakob with Thomas the Tank Engine. And I walk down the hall and there are photo’s of their beautiful little faces, smiling out at me. And there’s new photo’s Rach is sending me from NZ… and so right now I’m sitting here weeping so hard i can barely see. Sobbing so deep it feels like my stomach will explode. Because all of this is because I love them so much. All of the treatment and everything else that comes with it is so I can stay alive for them.

GOD!

Save us!

Save our family. PLEASE! Save me.

Take this disease from my body and this pain from my heart, from all our hearts.

I don’t know what else to say…. God, please help, once and for all. My heart is breaking more and more, every day. I don’t know how much longer I can take this.

Rachel, Cody & Jakob…. I love you so much. I wish I could show you just how much.

SIRT 2.0

•September 22, 2011 • 42 Comments

Everything today went perfectly according to plan.

The Doctor’s were able to head off a couple of potential leakage issues (as I understand it, anyway) and are very happy with the way things went. The way it’s all worked out is even safer than last time and we’re expecting good results.

Strangely enough, I don’t remember much of the procedure after the local anaesthetic went in and I felt the first little creepings of the catheter into my groin. Perhaps it’s the time between treatments or just the fact that I have developed a pretty high tolerance for pain and discomfort over the course of two years worth of chemo, but it was nowhere near as bad as I remembered it. I mostly remember smiling as they discovered my body has apparently grown a second Hepatic artery since last time. I will investigate this strange little phenomenon and find out exactly what it means, or even if I heard it correctly…. but it sounded like everyone thought it was pretty cool.

One other good thing to come from today was that they found a few more smaller tumours on the liver that the PET scan missed. So, they’re going to be targeting those as well. Nobody gets a free ride on my liver.

All in all it was a good day…. so many familiar faces and all of us happy to see each other again, even though the circumstances are so serious. There was a real sense of old friends getting back together. It’s also the first day in quite a while where I haven’t felt the compulsion to eat. I’m weaning myself off the Dexamethasone this week and it appears to be helping on the food intake side of things. It will be nice to get back to a non-ballooning and more stable weight range.

I’ve been given permission to take a camera crew in next week to film proceedings. It may take me a while to edit it all together but quite a few people have asked what the procedure is like so I figure this will be a good way to show you what happens.

Thank you for the support, everyone. It means so much to us.

Talk soon.

At the foot of Heaven

•September 21, 2011 • 38 Comments

“There are Angels around my bed tonight.

Some are there for comfort, some are there to fight.”

When I was younger I was fortunate enough to work on a lot of concerts. Rock shows, theatre, church gigs and stinky, smokey pubs. It’s where I learned my craft. One show in particular was with a band named DC Talk at the now derelict Perth Entertainment Centre. The quote above is from Kevin Smith, one of the singers from the band.

I just got the call from the hospital and the test implant or “workup procedure” is confirmed for tomorrow. From 7:30am to around about 5pm Sydney time I will be under live X-Ray, CT Scanners and Gamma Cameras as they track blood flow and a dummy “tracer” particle, to see where it all goes and if my body’s blood vessels are still wired the right way to withstand the SIRT.

As much as I need this treatment, it requires a strength that I personally do not possess on my own. I’m pretty fragile right now, emotionally speaking.

I know what’s coming tomorrow and as much as I have said I will do anything to continue this fight, the thought of what lies ahead is daunting. I know the discomfort that’s coming. I know that for three hours afterwards I am going to have to lay perfectly still in recovery so the puncture in my Hepatic artery can heal. I know that about an hour before I am discharged Rachel and the kids will begin their journey to the hospital in peak hour traffic to come and pick me up. I know that when I see them it’s going to be a struggle to maintain my composure and not burst into tears. Tears of relief, tears of weariness. I know that Cody will probably remember last time he was there with me and that I bought him and Jakob a “special chocolate cake” from the cafe.

I hope I have the presence of mind to remember to get him another one.

I’m afraid. I am.

What if my “wiring” has changed? What if the answer is “no, it’s not safe”? The people administering this procedure have done it over 450 times before. They know what they’re talking about.

What if?

What if?

What if?

God, I know I said “be it unto me according to your will”…. and I stand by that. I’m going to be walking those corridors again tomorrow and I’m scared. All I’m asking is that you meet me there, the same way you did nearly a year ago.

In you there is no darkness, because you are light.

Scatter the darkness, God.

Bring light.

Bring life.

I’m aching for it.

Please SIR, can I have some more?

•September 17, 2011 • 27 Comments

It’s been a crazy few weeks.

I’ve been in three countries, shot a music documentary with one of my favourite bands, made new friends and had a whole bunch of medical tests.

It was Jakob’s birthday this week, too. He turned three. I was diagnosed when he was just one year old so he’s only ever really known Daddy to be “a bit sick”. Seeing his face light up as he opened his presents reminded me why this fight is so important. You can do whatever you want to my body, to my mind… but you will not see me give up this fight. For the sake of my children, if nothing else.

My cancer markers have been climbing steadily since we came home from our holiday, that upward trend we so don’t like to see, so a PET scan was ordered. My first since diagnosis. It doesn’t get more detailed than a PET scan and I was happy to have it done so we could find out what was going on inside of me.

My biggest fear was that the cancer had jumped to another part of my body.

After an anxious weekend awaiting the results it was determined that, thankfully, we’re still only dealing with the liver tumours. There are four of them that showed up black on the scan. Black indicating blood flow and activity. Two at the top of my liver and two at the bottom. Basically, they’re really misbehaving. There was also one small tumour that appears to have ‘dropped’ from my liver to my Psoas muscle, which is located in the pelvis. The doctors seem to think this will be easily eradicated by some targeted radiation, so it will be monitored.

And that’s where I’m headed again….radiation… SIR Therapy.

I was hoping it would still be an option as I had heard it could be a once-only type of thing due to it’s potency, and as you may or may not recall I had a pretty hefty dose of it in November 2010. Thankfully the team at St. Vincent’s Hospital here in Sydney were a) very happy to see me and b) in agreement that it would be possible and we should get it underway as soon as possible. I’m scheduled to go in next Thursday for the ‘work-up procedure’, which is where they do a test run to make sure the blood flow is all correct and not leaking anywhere outside of the liver. Then, if that’s all ok it’s the real procedure a week later.

I know it’s probably going to sound odd but driving home from the hospital after being given the green light was not without it’s emotional moments.

I was elated.

I had walked in that day not knowing if I was going to be able to have another shot and within one hour was driving home knowing that not only was I going to get another chance but that the Doctor’s believed the outcome could be very effective at knocking off these problem tumours. It was really quite overhwleming…. I have another chance.

Another chance to fight.

Another chance to live.

Another chance to celebrate the birth of my children.

Another chance to see another Christmas.

Another chance to wake up in the morning and see my beautiful wife laying next to me.

Another chance to be reminded of the grace of God that covers me daily as I walk through this seemingly endless valley. The neon lights that are His promises to me, lighting up the darkness, showing me the way forward when all other light fails.

This is surely the hardest, most intense set of circumstances I have ever faced. It’s been two years now of non-stop treatment and I am weary. It’s taking it’s toll on me and my family. It’s war, make no mistake. But I am ready for it. I have been to this particular battlefield before. I know the lay of the land and I have a strategy that is proven and effective. Smith and Anderson will face off here once again. I’ll take a beating, but I know Smith is going to come off second best.

I was made for this.

Life is calling loudly to me. It’s not the way I imagined my life would pan out but I’m here, armoured up and ready to roll.

Just you try and stop me.

Because I choose to.

•August 27, 2011 • 22 Comments

Agent Smith: Why, Mr. Anderson? Why do you do it? Why get up? Why keep fighting?

Do you believe you’re fighting for something? For more than your survival?

Can you tell me what it is? Do you even know?

Is it freedom? Or truth? Perhaps peace?

Yes?

No?

Could it be for love?

Illusions, Mr. Anderson! Vagaries of perception. The temporary constructs of a feeble human intellect trying deperately to justify an existence that is without meaning or purpose. And all of them as artificial as the Matrix itself, although only a human mind could invent something as insipid as love. You must be able to see it, Mr. Anderson. You must know it by now. You can’t win. It’s pointless to keep fighting.

Why, Mr. Anderson? Why? Why do you persist?!

Neo: Because I choose to.

One Day.

•August 5, 2011 • 28 Comments

This is why I do it…

Cody, Jakob…. Daddy thinks the world of you both. One day you’ll understand it all.

Last/First/Last

•July 26, 2011 • 36 Comments

I want to do something great with my life.

Some people would very generously suggest that perhaps I already am. Fighting cancer, Rachel’s video, Oprah, lobbying the government… lots of things that might shoehorn me into that category. But… truth be told, though I appreciate the kindness of their words, I don’t consider my deeds thus far ‘great’. I don’t say that out of some false sense of humility or modesty. I say it because I see myself as barely hanging on… “on the edge of a thread” as a friend of mine wrote in one of his songs.

The problem is, greatness takes time and time is something I may or may not have.

When I say “great”, I don’t mean that I want to be someone that everybody considers wonderful or someone that everyone likes, because pursuing the approval and acclaim of others is, in my opinion, the fastest way to nowhere. The bible even warns of such “greatness” in Luke 6:26…

“You are in for trouble when everyone says good things about you.”

Fame and celebrity are fickle masters and ambition… well, I know a lot of ambitious people…. and I don’t like them very much. Ambitious people often don’t care who they tread on whilst climbing the ladder. It’s only on the way down, when they’re the ones being stepped on, does a realisation of the impact of their own behaviour set in. But the damage is already done by then.

But back to greatness…

I’m happy to live a quiet life. In fact, I’m happy just to live a life… period. Rich, poor, success, failure, struggle, easy street or any combination of the above… just to live would be pretty sweet in my books. To live without physical pain and sickness, even better. But I’ll take it, whichever way it comes. I have 3 very precious people depending on me. I don’t intend to let them down.

When I was first diagnosed, once the sting from that initial slap had died down, I started taking stock of my life. Those first few weeks before I started chemotherapy, before I knew if I had a chance, before I knew if my body would respond to the chemical onslaught… I began to consider what might be said of me should my end be sooner rather than later. If my life was a shout from a cliff top somewhere… what would the echo sound like?

Eddie Wilson once said: “What I want is songs that echo. The stuff we’re doing now is like somebody’s bedsheets. Spread ’em out, soil ’em, ship ’em out to laundry, you know? But our songs… I want to be able to fold ourselves up in them forever.”

I like that concept, even if it is from a movie character.

I want my life to be a life that, when it’s over and done, is a life that leaves behind memories and feelings that my loved ones can wrap themselves up in… find warmth in… find comfort in.

But how does one achieve this “greatness”?

In Mark 9:33 it says:

33 They came to Capernaum. When he was in the house, Jesus asked them,“What were you arguing about on the road?” 34 But they kept quiet because on the way they had argued about who was the greatest.

 35 Sitting down, Jesus called the Twelve and said, “Anyone who wants to be first must be the very last, and the servant of all.”

I’ll tell you a story….

While we were away on holiday in the USA recently we spent a lot of time in the hands of the Disney corporation. Disneyland, Disney World, Disney Hotels, even a Disney cruise. It was fantastic. Oprah said to us that life was all about energy and that we only have so much to go around…. she was right. My batteries needed recharging…. badly. And so off we went.

By the end of our 3 week trip we found ourselves back in Los Angeles for a short amount of time, not long enough to see good friends but long enough to hit up Disneyland one last time before we left. We had been told we had to try and get a table at the Blue Bayou restaurant, which is part of the Pirates of the Carribean ride. (Best ride there next to the Star Wars Tours ride, in my opinion). So we made a reservation, went off to Tom Sawyer’s island and went looking for pirate treasure.

Our reservation time rolled around and we found ourselves seated by the water. It was amazing. Lit only by lanterns and candles, it looked like an authentic New Orleans/Louisiana bayou type setting, complete with a jazz guitarist playing sad songs up on the balcony on what looked like a Gibson 335 semi-acoustic. Our server came over and introduced himself. A big black dude named Al. I liked him right away. Something Disney has done right is it’s employees. Our entire trip we were blown away at how nice and how helpful they were. You can have the biggest brand in the world but if the people “on the floor” day to day are jerks it’s not going to last long. But Disney staff, 100% in our experience, are the best advertising Disney has.

So back to Al…. he took our order and Rachel went off quickly to go to Splash Mountain, Jakob was asleep in his pram and Cody and I were playing with his Star Wars action figures on the table. Al and I got talking after he took our order, where we were from, how we ended up here, a little about my situation, and by the end of the conversation I said to Al: “If you have a wife and kids, don’t worry about “the stuff”. Don’t worry about what you feel you need to buy them or give them. Because one day, if you have to go, they’re not going to remember “the stuff”, they’re going to remember you.” I have no idea where it came from… it just happened. Al stood there for a minute in silence, turned to leave, turned back, turned to leave again, turned back, then finally said he was going to check on our order.

When Al came back he approached in a very different manner. He came slowly and deliberately and said that he had done some checking and that “everything was taken care of”. I asked him what that meant and he told me that our meal was free…. he was going to pay for it. I told him that it was an incredibly generous gesture but I couldn’t let him do that. By the time drinks and sides were added it was nearly $100 US dollars, maybe more. But he wouldn’t hear of it. I tried again but he said it was something he really wanted to do, and off he went.

I sat there, very thankful the room was quite dark because I was so moved by what Al had done I had tears rolling down my cheeks. Rachel came back, soaked, and we had our meal. I didn’t say much. I couldn’t.

When it was time to go I looked for Al. He came over and I stood up and just hugged him. I told him how much it meant to us, his generosity and selflessness. I told him that maybe he didn’t realise it but what he thought he did in secret was actually witnessed by my Father in Heaven.

In Matthew 25:40 it says: “The King will say… truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.”

I told him that seeing as how he wouldn’t let me pay, all I could offer him was to ask that God look after him and his family. I knew he would because he’s been looking after me and mine. I put my right hand on his shoulder and said: “Jesus… bless this man.” And there it was, the warm blanket over my shoulders. God was there. We hugged again, both of us quietly with tears running down our face, we exchanged contact details and went on our way to get ready for our flight.

Do you think Al woke up that day and decided he was going to do something great? I doubt it. He was probably just thinking it was going to be another day at work. I thought it was going to be a fun day at Disneyland but I left being so deeply moved by one man’s generosity and care. His…. greatness. What Al did for us will echo in my heart for as long as I live.

And, I think, that’s how you become truly great. You help others. You put yourself last so that they can go first. You don’t have to have a million dollars in the bank. What is it you have in your hand? What are you good at? Are you a mechanic? Does someone you know need help with their car? Are you a gardener? Is someone you know unable to tend their garden? Are you an accountant? Does someone you know need help with their tax return? Are you a stay at home mum and you cook a mean pasta? Do you know someone who could really do with some help at meal time? Are you a cleaner? Do you know someone who needs their house cleaned every now and then? Are you a regular dude who sees a family in a restaurant and you want to pay their bill? Do it. These are the sorts of things that make you great. These are the things that change the lives of others. I speak from experience. I know. All of the things listed above are things people have done and continue to do for me and my family.

Jesus said: “What you do to the least of these…. you do unto me.”

“Love” is a verb… a doing word.

Have a think about it…. then look around, find someone that needs a hand.

We all do.