Update: 31st Jan

Just a brief post to say that chemotherapy today was not affected by my food poisoning episode yesterday. I still received both the usual drugs (I will soon continue to extend the FAQs to discuss my treatment), and again had no reaction, thanks to the 20 mg of Dexmethsone that will probably keep me up tonight! Finding good veins for the canula is getting more difficult as some of the ones they have been using in the past are hardened from the treatment.

Also, my oncologist spoke very positively today and how well things seem to be going in his opinion. We discovered that I will probably receive only two more rounds of chemotherapy (and so chemo and radio will end around the same time). At that time, we'll wait four or six weeks for the radiotherapy to have its maximum effect and then repeat CT and PET scans to see where things are up to. We're praying that the growth will have either disappeared or no longer be active.

Today we discovered that a very friendly Christian lady we met a few weeks ago and talked to again today while waiting for chemotherapy is someone we've been praying for every week at All Souls, the sister of another All Souls member also undergoing chemo. It was encouraging to hear her story (and that of her niece, who accompanies her) and see her joy in God (she has only come to follow Jesus fairly recently, having been introduced to him via her niece).

Update: 30th Jan

The cost of cheap Thai
Today I had a bad afternoon. After eating cheap Thai on King St for lunch, I had food poisoning and needed to go into RPAH (my local hospital: Royal Prince Alfred Hospital) for a few hours to get checked out and have some fluids replaced. I've been told that during chemo, if I start to feel sick, I ought to go in and get checked out, because if my immune system is too low to fight an infection, then what might usually put someone in bed for a few hours could become much more serious. As it was, the food poisoning came and went quite quickly and I was in no serious danger, but it wasn't a pleasant afternoon. At least I had a good morning.

Tomorrow, I will go in again and have chemo #5 if my white blood count continues to be high enough. Today was day #20 (of 33) of radiotherapy.

In other news, our second week at our new church, All Souls Anglican, Leichhardt went quite well. I preached at both services on 'Global Scarcity', the fifth and final sermon in a summer series on globalisation. Sometime soon, it should be available for download from the All Souls site. We continue to feel very welcomed as we get to know more of the community.

Update: 24th Jan

      The Psalms end with this invitation:

Let everything that has breath praise the LORD.

- Psalm 150.6

      I have plenty of reasons to praise God at the moment, since I am now halfway into my treatment cycle and my breathing is basically back to normal. Although it will be a number of weeks before we have any more scans, at this stage, it seems that the tumour is shrinking (at least my bronchial tube no longer feels obstructed). Things have changed a lot since Christmas, when I would wake every few hours to find my left lung wasn't getting any air! I have exchanged some of the direct effects of the tumour (breathing and coughing) for side-effects of the treatment (mainly tiredness and weakness, but also some difficulty swallowing, which will grow as radiotherapy continues).
      Today I had my fifth (weekly) chemotherapy and seventeenth (daily on weekdays) radiotherapy sessions. They have all been going smoothly, apart from a sudden reaction two weeks ago during the administration of one of the chemotherapy drugs. Although not uncommon, the speed and intensity were quite scary as within sixty seconds I flushed, became very short of breath and had intense back pain for a couple of minutes until I was given drugs to counter it. Since then, I've been given an extra-strong dose of steroids before each chemotherapy, which has prevented another reaction but disrupted sleep on Wednesday nights (and given me a big appetite - I am still putting on weight, having been told by my dietician to enjoy a high protein, high calorie diet (!)). Generally, however, my sleep has been better and our daily life has been fairly 'normal' during January, albeit a little slower than usual with both of us feeling tired much of the time. I have also sometimes been having difficulty concentrating and find my increased absent-mindedness frustrating.
      Jessica and I have both started work for the year. Jess is working 3 days/wk in St Leonards as a social researcher. On Sunday I also began 3 days/wk (or some fraction of it, depending on energy levels) at All Souls Anglican Church, Leichhardt as a lay ministry assistant. I had energy on Sunday and enjoyed meeting new people. We're looking forward to getting to know and be part of this community at greater depth, as well as trying to reach out to the local area, particularly to those in the 20-30 somethings. If you're looking for a church around Leichhardt, feel free to drop in on a Sunday (10.00 am or 6.30 pm, cnr Norton and Marion Sts).
      We've been thinking recently about how it's important for the cancer to not become the centre of our lives and routine. Life is a gift and staying healthy is a good aim, but is not the most important thing. More important is continuing to grow in our love for God and those around us.

      For those who pray, we continue to appreciate and thank God regularly for your support. Here are some suggestions.
      Give thanks:
            • For continued improvements to breathing and the reduction in the growth.
            • For new opportunities to work and serve, especially for the community at All Souls, Leichhardt and what God is doing amongst them, which we'd love to join in on.
            • For unexpected acts of generosity and support from a wide range of people.

      Pray:
            • That the treatment would continue to reduce and remove the tumour with minimal and manageable side-effects and no further reactions.
            • That as we enter new contexts we would both have energy to keep caring for one another and strength to build new relationships of trust and grace.
            • That our focus would remain on the primary things (loving God and neighbour), with secondary tasks taking their appropriate place.

Symptoms

What effects does the cancer have? How does it feel?
The direct effects of the cancer are sometimes a little difficult to distinguish from side-effects of the treatment, however, there are a few clear symptoms of the cancer itself.

Voice
The first one to appear and which ultimately led me to getting the scan that discovered the growth was that I lost my voice back in October. At first, I had put this down to stress from a number of sources, but after a couple of months, I thought it was time to get it checked out. My voice had almost entirely disappeared within a week and then gradually came (partially) back. By having a tube stuck up my nose and down my throat (nasal endoscopy), it was discovered that my left vocal cord is paralysed in the 'off' position. In order to make a noise, my right cord has learned to compensate somewhat and so I do have a small voice. Importantly, I am not damaging my voice when I speak, so please don't feel guilty about making me talk. Furthermore, the growth is not in my throat, it is in my chest.* The effect on my voice is because the growth compresses (or has possibly taken over) the nerve that controls one of my vocal cords. This effect may well be permanent, since the radiotherapy is likely to destroy whatever might be left of that nerve. However, with speech therapy I may be able to recover some more voice than I presently have. Unfortunately, I don't think I will ever sing again as I once did. This is one of the saddest things about the whole affair so far. Please pray for my patience in expressing myself with less noise and ease than I once had.
*There seems to be quite some confusion over this, with many people asking me about my throat cancer.

Breathing
A second symptom of the growth itself was that since it had partially grown into my left bronchial tube (near the base of my windpipe/trachea), less air was getting into my left lung. When combined with some mucus build-up around the site of the growth, this would leave me quite short of breath upon even mild exercise (walking up a few stairs, walking above a dawdle) and often coughing quite vigorously. This symptom did not really develop until a week or two after diagnosis on 4th December, though by the end of December when I started treatment, I would often wake up at night to discover that I was only breathing on one lung. It was the severity of this effect that led to my chemotherapy treatment being started a week earlier than originally planned. Sometimes, the coughing would also lead to coughing up small quantities of blood as the tumour would get irritated by all the air movement. Since beginning treatment, my breathing has rapidly improved and now I notice almost no difficulty breathing. I still cough up quite a bit of mucus, but this is more due to side-effects of chemotherapy attacking the lining of my trachea than to the tumour itself. Praise God for the rapid effectiveness of the treament on this particular symptom!
Back to FAQ.

Prognosis

Is it terminal? How long do they expect you to live?
Again, no idea. Because of the rarity of this kind of growth in a person my age, there are very few statistics to give a guide as to average life expectancy or likely progression of the cancer and its responsiveness to treatment. Even if there were a larger body of statistics, all they can tell you are averages and likelihoods based on those somewhat similar to you. Every cancer is different and so is every individual response. Many doctors do not think that speaking in terms of so many years or months to live is particularly helpful in any case as it can become a self-fulfilling prophecy. Indeed, having a hopeful outlook can improve your chances. I am hopeful not because I think Christians are impervious to sickness, but because I hope in the God who raises the dead. Each day, each breath is a gift from the one who made everything and is able to sustain me as long as he desires.

Why do we need a doctor's permission to live or die? I will depart when my Lord calls me, not before. I pray and hope that is later, rather than sooner. I have no desire to die, no secret deathwish. Death is a bad thing, though it is not the worst of all possible things and in Christ, I need have no fear - not because he promises to keep me alive, but because he will accept what I entrust to him and raise me up into his new world one day.

Having said all that, initial indications seem to be that treatment is being effective. My breathing has improved significantly after just the first few weeks of chemotherapy. My oncologist's response when I asked if the chemo could be working so soon: "Chemo or prayer - I don't really care, as long as it works!". He seems quite upbeat about my chances and speaks in terms of "going for broke" and "curative doses" of radiotherapy. I take them as good signs for the moment - and keep praying!
Back to FAQ.

Cause

How did you get it?
No idea. I am not a smoker; I have not spent significant amounts of time in mining towns or around asbestos; I am only 28 years old. They are not even sure whether it started in my oesophagus or my trachea. I am a very unusual case and there are few parallels. All this makes prognosis very difficult because there are just not enough other similar cases to make statistical likelihoods very illuminating. Of course, if you do know of others with similar cases, I'd love to hear about them.
Back to FAQ.

Diagnosis

What do you have? What's the story? How big is it?
I have a primary squamous cell carcinoma of the upper aero-digestive tract. For those less medically inclined, let me explain each part. It is a carcinoma, generally known as cancer - a malignant tumour measuring 3.5 by 3.0 by 2.5 cm in size (or at least it did on 4th December. Hopefully it has already begun to shrink with treatment).

How many growths are there?
It is a primary tumour, which means that this growth is the original one. Left unchecked, it would spread to my lymph nodes and then to other parts of my body through a process called metastasis. Fortunately, we seem to have found it before this deadly self-reproduction had really got underway. However, in late December before I started treatment, my oncologist did find some a small tender lump in one of my neck lymph nodes. This seems have disappeared with chemotherapy. Similarly, a PET scan in mid-December discovered a few other possible secondary growths, though these were inconclusive and too small to treat with radiotherapy. The hope is that chemotherapy will have mopped them up.

What kind of cancer?
It is a squamous cell carcinoma, which refers to the kind of body cell in which the growth originated. Cancerous growths are normal body cells gone wrong, which start to reproduce themselves much faster than they ought and without reference to surrounding tissue. If this happens in or near a vital organ, it will eventually be fatal as that organ is taken over or crushed by the new growth. Malignant growths are those that also send out more cells into the rest of the body and begin to reproduce themselves elsewhere. By definition 'cancer' means malignant. Some tumours are 'benign', and just stay in one place (this can still be dangerous or deadly in some locations), but they are not generally called cancerous. Squamous cells are the cells that form linings inside the body, particularly in the oesophagus (food pipe) and trachea (wind pipe).

Where is it?
It is in my upper aero-digestive tract. This is a deliberately ambiguous classification since they are still not sure if the tumour began in my oesophagus (more common, but less likely in my case, given biospy results) or trachea (rare for a 28 year old non-smoker). The growth is located between these two tubes and grows into the base of my trachea, in my left bronchial tube (connecting the trachea with my left lung), partially obstructing it (this had been making breathing difficult until recently). It is a few inches above my heart. If you draw a horizontal line between my armpits, it is located on the left side about a third of the way across my chest. Please note: despite my voice being affected (and how we first discovered the growth), it is not a throat cancer, nor is it a lung cancer.

Can they operate?
No. Or at least not for now. Not only does it presently impinge upon two vital tubes already mentioned, worst of all, it is snuggled under a loop of the aorta (main artery exiting the heart). It is also hiding behind a rip, blocking clear access from my back. There may be some chance of surgery once it has shrunk from the combined chemo-radiation that forms the core of my medical treatment.

How serious is it?
Very serious. The rapid onset of symptoms seemed to indicate that it has not been around for long and was acting very aggressively. The speed with which I was given treatment indicated the pressing need for action. The possibility that it was already spreading (see above) also shows that it meant business. No one has given me a definite prognosis, as the rarity of my age and condition means that statistics are too scarce to make even an estimate. We just live each day as a gift, with hope in the God who raises the dead - and who also sometimes heals the sick.
Back to FAQ.

Blog Title

What does it mean?
My title is borrowed from a phrase by the Apostle Paul in 2 Corinthians 4.8. Here it is in context:

   For we do not proclaim ourselves; we proclaim Jesus Christ as Lord and ourselves as your slaves for Jesus’ sake. For it is the God who said, “Let light shine out of darkness,” who has shone in our hearts to give the light of the knowledge of the glory of God in the face of Jesus Christ. But we have this treasure in clay jars, so that it may be made clear that this extraordinary power belongs to God and does not come from us.
   We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed; always carrying in the body the death of Jesus, so that the life of Jesus may also be made visible in our bodies. For while we live, we are always being given up to death for Jesus’ sake, so that the life of Jesus may be made visible in our mortal flesh. So death is at work in us, but life in you. But just as we have the same spirit of faith that is in accordance with scripture--“I believed, and so I spoke”--we also believe, and so we speak, because we know that the one who raised the Lord Jesus will raise us also with Jesus, and will bring us with you into his presence. Yes, everything is for your sake, so that grace, as it extends to more and more people, may increase thanksgiving, to the glory of God. So we do not lose heart. Even though our outer nature is wasting away, our inner nature is being renewed day by day. For this slight momentary affliction is preparing us for an eternal weight of glory beyond all measure, because we look not at what can be seen but at what cannot be seen; for what can be seen is temporary, but what cannot be seen is eternal.

- 2 Corinthians 4.5-18 (NRSV)

Paul is speaking of his own ambiguous experience in life. He lives the reality of following a crucified and resurrected Lord and his experience embraces both realities: suffering in this present age in the midst of a groaning world, yet filled with the same Spirit who raised Christ from the dead. And this is the experience of all Christians: neither a triumphalistic walk in the park through wealth and health, but nor a bleak and hopeless spiral into pain and despair. Nor simply a mix of light and dark. But a rich yearning in a cracked world, where experiences of failure and suffering become occasions for the revelation of God's mysterious resurrection power: his power is "made perfect in our weakness", Paul claims later in this same letter, because it is at these points that the nexus between human effort and success is broken, and it becomes apparent that our frail existence owes everything to God. We have the treasure of life and new life in Christ hidden in the clay jar (the ancient equivalent of a throw-away styrofoam cup) of a bodily life constantly thwarted by illness, sin and ultimately death. The goal is not a Platonic escape from the body into a 'spiritual' extra-bodily existence, but is nothing less than our own future resurrection from the dead in a renewed universe.

But while we wait, my experience of the Christian life is often well summed up by a phrase that has been something of a personal motto since it struck me powerfully back in 1998: perplexed, but not in despair.

And to wax a little indulgent, here is a piece of angst poetry from my 20-year old self when I adopted the motto.

perplexity without despair

Wandering slowly up the garden path,
      trapped between conceit and metaphor:
      an adult playing at adult games.
Uncertainty, aimlessness, ignorance.

Wondering slowly between vague mistakes,
      undefined ideas far from ideal,
      far too bored to misspend a minute.
Introspection, paradox, transience.

Pondering when, what and whether to think,
      looking at a world of perceptions,
      but not out for other perceivers.
Fragmentation, finitude, selfishness.

Pandering to wind, wave, whether and whim;
      often vanquished at the death struggle,
      yet stalwart with this treasure within.
Vacillation, tragedy, assurance.

(31/10/98)
Back to FAQ.

FAQs

Here are links to various topics I am often asked about:

Blog title: what does it mean?
Breaking news: what's the latest update?
Diagnosis: What's the story? What do you have?
Cause: How did you get it?
Prognosis: Is it terminal? How long do they expect you to live?
Symptoms: What effects does the cancer have? How does it feel?

This list is still under construction - I will be adding more content over the coming days and weeks. Please be patient, though you can let me know in comments if you have questions you'd like answered.

Introduction: read this first

Welcome & blog introduction
Welcome to my second blog. My main blog, nothing new under the sun, is for general personal and theological reflections, links, commentary and discussion. Please come over, check it out and join in sometime. This new blog is specifically for personal and health updates, frequently asked questions about my life with cancer, prayer points and discussion. Feel free to browse and make comments, even if you don't know me personally. Latest updates will appear at the top of the page as things develop.

About me
I am a twenty-eight year old Christian from Sydney, Australia recently diagnosed with cancer. My wife Jessica and I live in Camperdown and from this week will church at All Souls Anglican Church, Leichhardt, where I am beginning work serving part-time as a lay ministry assistant (we have just moved from St Barnabas' Anglican Church, Broadway), having recently completed a four-year Bachelor of Divinity from Moore Theological College.

Initial signs and diagnosis
Back in early October last year I began to lose my voice (mentioned here and here). It was a very stressful time at college and personally and so for many weeks, I simply rested my voice and waited for it to return, unfortunately missing some speaking engagements and mercifully giving my classmates more chance to speak.

However, after a couple of months, exams were over and life was slowing down, but my voice hadn't fully return so I went to get it checked out. A nasal endoscopy quickly discovered that my left vocal chord is paralysed, greatly reducing my volume and range. A CT scan the next day was intended to rule out one possible cause: a compressed nerve. This scan discovered a growth (3.5 by 3.0 by 2.5 cm) in the middle of my chest, extending between my oesophagus and the base of my trachea, and growing into my left main brochial tube, partially obstructing my breathing. I received this news on the 4th December and so regular readers might realise that all the posts since here are coloured by this news.

Weeks of tests and hospital visits ensued, at the end of which it has been determined that I have a primary squamous cell carcinoma of the upper aero-digestive tract. There are no secondary growths (praise God), but as it presently stands, the tumour is inoperable, being trickily located at the junction of primary tubes for food, breath and blood (aorta).

Treatment
I began chemotherapy on 27th December and had my first radiotherapy session on 2nd January. I am physically tired and sometimes have difficulty concentrating, but am generally quite well. My breathing, which had been getting progressively more difficult throughout December (and which was affecting my energy and sleeping), has eased even in the last couple of days - another reason to rejoice.

Reaction
It's hard to say exactly how Jessica and I are feeling, because there are many aspects to the experience and the last few weeks have been such a whirlwind of responses and new challenges. There is shock at the ugly presence of sickness and wrong in God's good world. There is sadness at lost or delayed plans. There are bouts of some anxiety and uncertainty, mixed with pragmatic necessities and reflective moments of insight and new perspectives. There is joy in the love of friends and family and the daily gifts God gives. There is a yearning for Christ to return and bring healing to his entire groaning world. Overall, we are feeling well in spirit, trusting the God who calls into existence the things that are not and raises the dead. There is no reason to fear, because the light has dawned on all of us who sit in darkness, in the shadow of death.

Prayer points
For those who pray, here are some suggestions.
Give thanks:

• For so many positive reasons to rejoice: life and new life in Jesus; overwhelming support and offers of help; providential proximity to hospital (just a few hundred steps down the road); reasons to live found in all those around whom I can serve and from whom I receive so much; hope despite brokenness because Christ is the author of life and through his death destroyed the power of death and rescued us all from slavery to the fear of death.
• For a deeply encouraging celebration of 'God with us' over Christmas: God thinks this life is worth sharing - and fixing.
• For a health system that provides hours of medical expertise and attention, a wide variety of drugs and equipment for basically no charge.
• For easier breathing and sleeping since soon after treatment began.

Pray:

• That the combined chemotherapy and radiotherapy are effective in reducing the size of the growth (down to nothing!).
• That side-effects will be minimal and for patience to endure what is necessary, growing in perseverence, character and hope.
• That Jessica and I would stay thankful, loving and hopeful, trusting God to give strength each day. "The steadfast love of the LORD never ceases, his mercies never come to an end; they are new every morning; great is your faithfulness." (Lam 3.21-22)

There is more to come.

**Under construction**

Watch this space. I will be creating a blog for health updates and answering FAQs about my cancer and treatment.