Kitabı oku: «Days Like These: A life cut short by cancer, a love that touched the world»

For Cody Israel and Jakob Judah. It was all for you.

Contents

Cover

Title Page

Dedication

Foreword: A note from Rachel Anderson

1. Let me bring you up to speed

2. Going the distance

3. One of the lucky people

4. Wonderful inconvenience

5. Calling all angels

6. Dead man walking

7. How the light gets in

Epilogue

Picture Section

Thank you

Acknowledgements

About the Author

Copyright

About the Publishers

Foreword
A note from Rachel Anderson

Ring the bells that still can ring

Forget your perfect offering

There is a crack in everything

That’s how the light gets in

LEONARD COHEN, ‘ANTHEM’

My name is Rachel Anderson and I am Kristian Anderson’s wife. I will not say ‘was’, even though Kristian left this life on 2 January 2012.

Kristian was my husband, the father of our two boys Cody and Jakob, a television editor, musician, man of faith. Through the last two years of his life Kristian did battle with cancer in his bowel and liver. His way of keeping his friends and family updated with what was happening with his cancer battle and in our world was through his blog, How the Light Gets In (http://howthelightgetsin.net). In choosing the name, Kristian was inspired by Leonard Cohen’s lyrics; he said that the words seemed like a good fit for him at that time in his life.

As it turned out, Kristian’s blog was seen by people far beyond the immediate circle of those who loved him. More than a quarter of a million people paid a visit from all around the globe: he had many visitors from Australia, the United States and New Zealand as well as more than 150 other countries. In the week he died, there were over 450,000 hits on the blog.

Through his last months here, Kristian worked on writing a book that he could leave behind for Cody, Jakob and me, drawing on words and photos from his blog. Now that he is gone, it seemed that one way we could honour his memory was to make sure this book came to be.

So here it is. I hope that it will be a blessing to the many who loved and supported Kristian through the time he was with us.

Rachel Anderson

February 2012

1
Let me bring you up to speed
ERASE AND REWIND

Let me bring you up to speed.

I have cancer.

In the bowel and liver.

I am 34 years old.

I have a beautiful wife and two boys under three years of age.

NO NEWS IS GOOD NEWS?
Friday 2 October

After travelling to the USA for a friend’s wedding during the last week of September 2009, I arrived back in Sydney with the usual jetlag associated with a 13-hour flight. I didn’t think much of it and continued on with my work schedule.

Went in to work to tidy up the edit suite. Did a little bit of file archiving. Shut the suite down at the mains, as I was about to start an eight-week contract as one of the editors on Come Dine With Me Australia at another editing facility at Fox Studios.

Saturday 3 October

Headed out to do some demo recordings with a young Newcastle band at The Grove Studios. Tracking was basic but successful and we got what we wanted.

‘YOU GO SEE THE DOCTOR, DAD’

Those were the words of my three-year-old son, Cody. He had asked me if I was OK, as he often does, and I had replied that I had a sore tummy.

Monday 5 October

Public holiday. Woke up at 12 a.m. with what I thought was a nasty stitch in my side. You know, the kind you get when you go out running. Quite a bit of discomfort but just tried to ignore it. No relief by 5 p.m. so off to the doctor’s surgery I go, with a stern but loving sendoff from Rachel and Cody. Went to Warringah Mall Medical Centre and for the first time in 10 years got a doctor who seemed genuinely interested in treating me. Turns out he is taking an online songwriting course at Berklee College of Music in Boston and is a bit of a music/audio nut. We got along great. Doc says I may have deep vein thrombosis due to recent air travel, but since I mentioned I have also been getting a little blood in my bowel movements he refers me to emergency and another specialist.

6 p.m.: I am admitted to Manly Hospital, scans are ordered and by 11 p.m. it is determined I have a blood clot on my lungs. I am given blood-thinning medication immediately and ordered to stay overnight.

D-DAY (DIAGNOSIS DAY)

From here on out everything in our lives has been separated by this day … before diagnosis/after diagnosis. This is a marker we can’t ignore, much as we would like to.

Tuesday 6 October

After a night of almost no sleep (emergency ward, lights on all night) I chat with the nurses who advise me my treatment will be simple, just a daily injection of Warfarin (blood thinner) and a daily blood sample. Six months’ worth should do it. Resign myself to the fact that I will have to do it and decide to discharge myself, against doctor’s wishes.

Q: Why would I discharge myself if the doc said not to?

A: I work for myself and was already missing the first day of an eight-week contract. Not a good look for a new client, even though they were aware of the situation and very understanding.

Tried to check out but then nearly passed out, so was ordered to stay.

Because I tried to leave they gave my room to another patient and now I’m sitting in the corridor. Rachel arrives about an hour later with Jakob in tow; Cody is at kindergarten.

The specialist asks to speak with us. Says there’s been a mistake. They use voice recognition software to get the reports done and the software thought it heard ‘blood clot present’ when in actual fact the doctor said ‘no blood clot present’. Sorry about that, but while you’re here, we noticed something unusual at the bottom of the lung scan, on your liver. There are lesions there that concern us and we’d like to do another scan. We’re pretty sure that with the symptoms you’re presenting you have cancer. But we need to check it to be sure.

You know that feeling you got in your stomach when you were young and you got caught doing something naughty, that feeling of impending doom? Yeah, that one. I got it right about here. Rach and I just sit there while Jakob gets into all the things a one-year-old kid loves to get into. So glad he’s oblivious.

If you’ve spent time in hospital you know it involves a lot of waiting around. By the time we get all this info it’s time to get Cody from kindy, so Rach heads out to pick him up. As it turns out, today is the day Rachel’s parents arrive from Auckland. They’re here to compete in the cycling in the Masters Games (which aren’t for a few days yet) so Rach drops Cody off with Nanna and Poppa, and Cody thinks he’s in heaven.

Sitting by yourself in a little hospital waiting room is not fun when there are less serious items on the table, let alone the possibility of cancer. It’s not a good place for me to be by myself and in the eerie soundscape of the ER I begin to pray. I have no eloquent words to use. No lofty prayers to the Almighty. Just two words:

God, help.

They’re ready for me to go in for the next scan so I drink a litre of oral contrast and lie down while they prep the scanner. The phone rings, it’s Rachel’s ringtone (Take On Me by a-ha; I wanted to use I Touch Myself by the Divinyls but she said she would never call me again if I did) and I lose it. I can’t help but be frightened and on the other end of that phone call is my wife. The thought of leaving her and the boys is too much. Trying to keep still for the scan but my body is heaving from the sobs. Finally get it together long enough for the scanner to do its thing and then get wheeled back to my room.

Rachel arrives. More sobbing. Both of us. The sound echoing off the tiny room with high ceilings. Jude, the Scottish doctor, comes in to take my cannula out so I can go home. She knows what’s going on, I can tell by the look in her eyes and by the way she gently touches my arm. Specialists in another room down the hall are gathered around my scans. Various noddings and so on. Doc comes in and says it’s cancer. No primary in the liver, so they’re guessing that one is in the bowel. Go home, rest up, see the surgeon in a few days.

Rachel drives her car home and I get in to mine. Halfway home I lose it again and the road becomes blurry. No subtle prayers, no dignified utterances, no sacred recitals … just weeping … shouting.

God, help.

IN SICKNESS AND IN HEALTH

Rachel and I can’t look at each other without bursting into tears. Trying to keep it together in front of the boys is difficult. We don’t want them to detect any upset because there’s no way we can make them understand the gravity of what’s happening. We went to sleep crying and woke up the same way. I felt Rachel put her arms around me during the night, then I felt her body shaking from the tears.

It’s just not real. This is not our life.

JUST RELAX

I can’t remember the date but we ended up back at the surgeon’s office. He was very matter-of-fact, which I prefer, and told us what we were dealing with: cancer. He orders a colonoscopy and gives me some PicoPrep, which is basically a really fast way to empty my bowel before he jams a camera up my ass and takes a look around.

Any male who is happily heterosexual will understand the cringe factor attached to this procedure. Needless to say I am not looking forward to it.

OH DIGNITY, WHERE ART THOU?
Friday 9 October

Back at Manly Hospital for the dignity-destroying colonoscopy.

9 a.m.: All ready to go, something injected into my arm, oxygen mask on … feeling sleepy.

Close eyes.

Open eyes.

Ask when they’re going to get it over with. Nurse says it’s now 10:30 a.m. and the ‘procedure’ has been completed successfully.

For all I know I was kidnapped by aliens and probed for an hour and a half before being delivered back to the very same position I was in before the kidnapping. I’m not sore at all so I guess they must have been gentle. Anyway, better to not dwell on that one. Anaesthetic wears off and Rach drives me home. Grateful the hospital is only 10 minutes drive, via Manly beach. At least I have nice scenery while I contemplate my ‘probing’.

EVEN THOUGH I WALK THROUGH THE VALLEY OF THE SHADOW OF DEATH

We’re back in the surgeon’s office.

Yep, it’s bowel cancer. It’s about 45 cm up my bowel and is about 2 cm in size, wrapped around 75 per cent of the colon. Judging by the size and usual growth times of these sorts of things, it’s been there for about 18 months. This explains why it has been hard to get bowel movements happening of late. It has also spread to the liver, but we knew that.

Wonderful.

I am referred to an oncologist and we go home. Strangely enough, feeling all right.

Even though I walk

through the valley of the shadow of death,

I will fear no evil,

for you are with me

PSALM 23: 4

I now know what it means to walk through the valley of the shadow of death. But the thing about a shadow is that it is vaporised by light.

1 John 1: 5 says:

This is the message we have heard from him and declare to you: God is light; in him there is no darkness at all.

As I emailed a friend:

For some reason my faith is surging when I am normally quite melancholy. I sense a battle ahead but I also sense a victory. I’m frightened of the medical processes ahead. My body is going to go through hell, not to mention my mind … but I have hope. Real hope. I’m going to make it out the other side of this and there will be tales of miracles. It’s time for me to stand up and be counted.

What poor research my enemy has undertaken! His recon team should be hung, drawn and quartered! What terrible destruction I will bring to his doorstep. What violence I will unleash against him.

Don’t you know who I am? Don’t you know what you’ve just awoken? Don’t you know who fights for me?

You will regret the day you picked a fight with me. You can count on it.

‘Because he loves me,’ says the Lord,

‘I will rescue him;

I will protect him, for he acknowledges

my name.

He will call upon me, and I will answer him;

I will be with him in trouble,

I will deliver him and honour him.

With long life I will satisfy him

and show him my salvation.’

PSALM 91: 14–16

ONCOLOGY

That’s a word I never thought would pass my lips.

Oncologist.

Arrive at Manly Hospital again, head up to the oncology ward. Very quiet here. Just a few people sitting around receiving their chemotherapy. This will be me in a few weeks’ time.

We go in and start getting some explanations. One of the hardest things through all of this is the waiting for confirmations and/or information. I feel as though I have been hung over a cliff with nothing but a thread to hold me up, swinging in the breeze.

Waiting.

More waiting.

Yes, no, maybe.

Bloody hell.

The surgeon won’t comment on the oncology side and the oncologist won’t comment on the surgery side. Ok, fair enough. But tell me something.

So we’re getting down to the nuts and bolts now. Chemotherapy. Three months’ worth. Once every two weeks.

A TRIP TO ‘THE BANK’

With chemotherapy confirmed, Rachel and I have to make a decision on some ‘family planning’ issues.

Meaning, Rachel wants more kids and there’s a 50:50 chance the chemo will knock my little swimmers out of action. It’s too great a risk to take for us so we’re referred to IVF Australia and organise a ‘deposit’.

Now, I have seen this sort of thing in movies and heard stories about it but nothing prepared me for what I was about to experience. We rock up to this unassuming little building on the Pacific Highway in Greenwich on a Saturday morning, en route to my Nan’s 90th birthday party no less, and I head inside. Rach and the boys wait in the car. Up to the first floor and there’s only women at reception.

Great. As if this wasn’t already awkward enough for me.

Fill in all the forms, permissions, power of attorney etc. in case something happens to me, and then I am introduced to the scientist. Who happens to be a not un-attractive Asian woman about my age. It just gets better.

So we fill in some more forms and the terminology on these forms is making me blush a bit but hey, it’s for a scientist, right? It’s all for science. The camera up the ass and now this, all for science. Can someone nominate me for a Nobel Prize in physiology or medicine? Geez, if Obama can get the peace prize then surely I can get some kind of concession here?

Anyway, the lovely scientist leads me to my cubicle and in I go. Based on what I have been told, I am expecting a pile of porno mags, but no. The digital age has come to sperm banking and there’s not a magazine in sight. Instead there stands a pearly white Samsung LCD monitor, all neatly cabled and connected to an A/V socket in the wall. Quality installation. Out of curiosity I press the power button. Maybe the Weather Channel or MTV?

No.

Just what you’d expect. Off with the TV.

Anyway, you know the rest. I did what I had to do and got out of there quick smart. I was a little anxious about returning. The doc said I’d need to go three times to get enough stems to be viable. The thought of doing it twice more was a little unsettling. But not to worry, the scientist called me back a few hours later and said that she normally likes to receive 20 stems for a viable freeze and I gave her 19. So I don’t need to go back. Woohoo!

I’ve told Rachel she better not even look at my groin or she could get pregnant. Maybe those Superman undies weren’t so ostentatious after all?

Anyway, as you were.

FALSE START

I was supposed to start chemotherapy today. It was to be a long day of education, inserting the PICC line (like a permanent drip line for the drugs) in my arm and then the first round of drugs. It turns out the PICC line would be a real hassle. Constant need to change the dressing, can’t go swimming at all (it’s warm here now and the beach is so beautiful in the mornings), but the biggest issue for me was that there was so much external guff that it would be quite difficult to be around the boys and not have an accident. All these bits and pieces hanging off my arm would have been a huge dangling carrot for Jakob, who loves to play with anything and everything. He doesn’t understand ‘no’ yet so the only way to keep the PICC line safe would be by seriously limiting my contact with him. And that’s not gonna happen.

So we opted for the port catheter (or portacath) instead, which is basically a silicon injection pad inserted under my skin and a catheter that goes directly to the vein required for the chemotherapy. It requires a brief surgery to have it ‘installed’ but after that it can stay there for years. I can function totally as per normal (if indeed I ever was ‘normal’) and the port is really low maintenance in comparison to the PICC. It’s also totally invisible to the untrained eye, which will mean Cody won’t notice any weird cables coming out of Daddy’s arm. Another plus.

I’m a little bummed as I really wanted to get this thing underway, but ultimately this will make the chemo easier to deal with and so I will wait. The other bummer is that it will change my on/off cycle by a week. My sister-in-law is coming over for a week in November on what would have been my ‘on’ week. She’s a doctor and I was kinda looking forward to her coming to the oncology ward with me to check it all out. Anyway … it’s OK I guess. Met another doctor today, too: the vascular surgeon who will implant the port. He makes about the seventh doctor in two weeks.

My mother is here for a week so we have someone to look after the kids tonight. It’s pretty rare that we get to go out at night these days without the kids, so we’re going to see a movie. I know it’s not the most romantic of evenings and it’s cheap-ass-Tuesday, so it will likely be packed. But, for me, anywhere alone with Rach is pretty special. It will also be nice to go out and forget about things for a couple of hours.

NOT JUST ANY PORT IN A STORM

I spent yesterday back in the company of the wonderful staff at Manly Hospital. I’m not being sarcastic, either: they’re truly amazing people. From the admissions staff to the nurses to the surgeons, everyone cares. The Australian media has really got it wrong with all their hospital bashing. And the best part? It’s all free. Medicare is taking care of everything. What kind of incredible country do I live in where all my medical costs are covered by the government? One of the drugs required for chemotherapy is $5,000 a month by itself! So if you have an inkling that Australia is not the lucky country any more, let me tell you now, you couldn’t be more off the mark. Anyone who lives here is truly blessed.

It was a good day to be inside as it was grey and overcast outside, so off we went to get the portacath installed. I headed up with Rach at 11 a.m., got prepped and then just waited. Rach headed off to do some stuff and the nurses told her they would call when I was ready for pick-up. Again, in with the cannula, on with the oxygen mask and a guy came and drew an arrow on my chest. Kind of like a ‘this is where you cut him open’ marker, no kidding. Thankfully everyone in the operating room can read map directions: when I woke up I was sore in the right place.

They really hammered me with the anaesthetic. I’ve never been so groggy coming out of an operation before. I was aware that my speech was quite impaired, less than half the speed I usually talk, and my mouth was very dry. It’s quite a trip when you’re trying your hardest to open your eyes and they just won’t respond. By the time I finally opened up it was close to 7 p.m. My mum was home watching the boys, so Rachel arrived not long after and I was discharged.

When we got home Cody was very happy to see me but he had been told Daddy was very sore on his shoulder and to be gentle with him, not to hurt him. Bless his little heart, when I asked him for a cuddle he started forward but then obviously remembered what he’d been told and pulled back. ‘Nooooo,’ he said. ‘I don’t hurt me on my shoulder. You got sore shoulder, Dad.’ Cody gets his you/me muddled up sometimes but I knew what he meant. I showed him the ‘hospital stickers’, which is what he calls the bandages. He looked at them and said, ‘I like your cool stickers, Dad!’

It’s nice to know that in the middle of all of this there are people that love me just because. I can’t imagine what it must be like to get this kind of news and have no one to lean on.

I walk around my house and see all of the boys’ toys, scattered all over the floor, and think to myself, how beautiful.

I see one of Rachel’s Understanding Chemotherapy books left on the bed and know the woman I married is educating herself so she can fight beside me.

When Rachel and I were married, I promised her in my vows that I would fight for her. I never imagined it would be this kind of fight, but I will not let her down. I will fight this cancer with every ounce of strength I have, and when I have none left and can walk no further I will rest and let my God carry me.

… those who hope in the Lord

will renew their strength.

They will soar on wings like eagles;

they will run and not grow weary,

they will walk and not be faint.

ISAIAH 40: 31

THIS ISN’T KANSAS ANY MORE, TOTO

The past week has been … intense.

It started last Monday with a five-hour infusion at the hospital.

To give you an idea of the toxicity of the drugs I am receiving, the nurse wears elbow-length rubber gloves, a face mask and a full body gown just to handle the drugs in their bags. The drugs don’t at any time leave their bags except to enter my body through a tube. So, while the nurses go to great care to protect themselves from any kind of exposure to the drugs, they freely pump me full of them. If that wasn’t enough to add a few more grey hairs to the scalp, further research revealed that chemotherapy has its origins in chemical warfare. It was discovered by accident during World War Two, when doctors were performing autopsies on soldiers killed with mustard gas. Over the years it has been developed and refined into the treatment I am receiving now.

This is serious business. They’re actually killing parts of my body to get to the tumours.

There is one word that I think describes chemotherapy:

Violent.

I actually felt OK the day of my initial infusion and the day after, though a little queasy. I even did a full day’s work the day after.

But the next day, that’s when I got hit. Nausea, vomiting, fever, sweating, dehydration and, your friend and mine, diarrhoea. I also had the hiccups for 15 hours straight.

So I drive myself from the edit suite to the hospital to see the oncology nurse.

(Mental note: Don’t drive when about to pass out. I’m sure it voids something in the fine print on my insurance policy.)

Arrive at the hospital, nurses look horrified and I’m immediately admitted to the ER. Then, following a variety of tests, I am told I’m not going home and am moved to my own room for the night. Small mercies: my own room with a sunset view out over Sydney Harbour. But I still want to go home.

No, you’re staying put.

Hospital is all about waiting, and it’s hard to stay positive when your mind has such a dull environment to go wild in. Suffice to say it was not a pleasant night for me, despite the stunning view out my window. My mind continually wandered to Rachel, Cody and Jakob. In the loneliness and darkness the fear begins to talk to me, mocking me. My mind is besieged by all sorts of fatalistic imagery and the tears come like a flood.

Then something clicks inside me.

No.

It is written:

He was looked down on and passed over,

a man who suffered, who knew pain firsthand.

One look at him and people turned away.

We looked down on him, thought he was scum.

But the fact is, it was our pains he carried –

our disfigurements, all the things wrong with us.

We thought he brought it on himself,

that God was punishing him for his own failures.

But it was our sins that did that to him,

that ripped and tore and crushed him – our sins!

He took the punishment, and that made us whole.

Through his bruises we get healed.

ISAIAH 53: 3 (The Message)

Through his bruises I get healed.

Through his bruises I get healed.

Through his bruises I get healed.

And then the room is flooded with peace and I sleep.

The next day I’m told that the doctors believe I have picked up a bug or infection of some kind. Chemotherapy messes up the immune system and while I am receiving infusions I will be vulnerable. This just happened to be ‘really bad luck’, according to my oncologist. Future infusions should not affect me so badly. I’m kept another day to be safe and then sent home on Friday afternoon.

When I get home, Cody is at kindergarten and Jakob is super happy to see me and we have the most awesome cuddles on the couch. Every second is treasure beyond words.

I can now feel a seismic shift going on inside me. It’s one thing to say ‘I will fight this’ when it’s just a diagnosis on paper. It’s another thing entirely to sustain that focus while you’re in the thick of the battle, bleeding from the fury of the fight. This fight is as much physical as it is emotional and spiritual. You can’t stare into the face of your own mortality and walk away without being profoundly and irreversibly changed.

This is as real as it gets.

My body will survive this assassination attempt, of that I am sure, but the old Kristian, the pre-cancer me, is dead.