Wednesdays were pretty normal

WednesdaysGreat title. Great cover. Great book! Wednesdays were pretty normal: A boy, cancer, and God by Michael Kelley has given me plenty to think about. It’s an open and honest story of a father wrestling with faith questions, after his boy is diagnosed with leukaemia. All the books I’ve read on cancer and serious illness so far, have been written by the patient themselves. This book, by the father, feels even more potent. When it’s happening to me, that’s bad enough, but if it were my own child, then I suspect I’d find it even harder. I especially recommend this book to parents who face the heartache of their children having serious illnesses. This is a battle ground for faith. Not just intellectual ascent, but struggle to keep trusting in God.

Kelley was trained as a pastor and thought he knew all the right answers to most problems. He figured he understood faith. It was a noun. Joshua’s cancer put this to the test. He began to realise it was something he needed to choose. It was one thing to have a set of beliefs, but another thing entirely to act on them in adversity. If God was truly in control of this world, then what did that mean for the evil and cruelty he saw and was now experiencing? He couldn’t pick and choose what he liked about God. If God was to be trusted for real, then this meant trusting him in the good times and the bad.

Faith and doubt are sometimes seen as opposites. Kelley shows how they are often part of the same experience. He’s on solid scriptural ground with this, quoting the man who came to Jesus in Mark 9:24, saying “I do believe; help me overcome my unbelief!” There is a humility in these words. The man’s failings are obvious. All he can do is trust in Jesus, because his own resources are lacking. Isn’t this the essence of faith – trusting in Jesus, rather than trusting in our own faith? I wonder how often those who are perceived to have a ‘strong faith’ are tempted to trust in the wrong thing – ultimately themselves? As Kelley writes…

What if our definition of faith is wrong? What if we have been putting faith in our own ability to have faith? What if real faith is not necessarily absent of questions and doubts; what if real faith is more about what we do with doubt than whether we have it?  (p33)

As Kelley describes the impact of chemo on his boy, I find myself feeling most of what he describes. He speaks of the toxic impact, the drugs, the side effects, the pain killers. He also describes the psychological impact, the emotional pain, and the spiritual questioning. Why are these things happening? He introduces us to the experience of Job in the Bible, and his quest to find answers from God. Job puts his challenges to God, and yet God chooses not to answer them. Instead, through four chapters, God makes himself known. Not why, but who, is the answer God gives.

Never once did God crack the door of eternity and say, “See this whole thing started when Satan came walking in here…” Never once did He take Job into the future to show him the good that would come from his struggle. Never once did He reveal the way He would redeem Job’s pain. Never did God show Job one of the billions of Bibles that would be printed in the future, all containing his story. Not one single answer to Job’s specific questions. Just descriptions of himself.  (p50)

Kelley shares his ongoing struggles to find evidence of God’s love. The circumstances of pain seem to argue against God being loving towards him. Where is God when he’s needed? Why doesn’t he fix things up when he’s asked? He writes…

I didn’t need a Jesus who was sleeping in the boat while the storms raged around His friends. I needed a Jesus who was turning over the tables of sickness and disease and calling out cancerous cells like they were demons.  (p56)

I can certainly relate. What a great picture! But, if we only look to our circumstances for proof of God’s love it can easily seem like God has given up on us. We need to remember how acquainted Jesus is with human suffering. He didn’t offer sympathy card platitudes. He shared in our pain and he shed tears like us. He faced rejection, betrayal, torture and death. He bore our sin in his body. He took the judgment we deserve. Here is compelling proof that God is not remote, that he hasn’t abandoned us, and that his love is profoundly deep.

Kelley shares the breadth of grief he experienced in dealing with his son’s cancer. The dreams that were shattered and the plans unfulfilled. He speaks of losing his identity, his sense of significance, and becoming poor in a variety of ways. The experience of Joshua’s sickness and treatment was hugely demanding. It took Kelley to the ends of his resources, and it was then that he began to picture himself more accurately. When career and health and achievements and family life are all altered and threatened, then the truth about ourselves comes into focus. It’s only when the things we’ve clung to to define ourselves are stripped away, that we are freed to see ourselves more clearly in Christ.

We learn in this book about how God has brought healing to Kelley through his son’s illness. God revealed to him sicknesses that he didn’t know he had.

It’s brought to light my shallowness. It’s brought to light my idealistic view of faith. It’s  brought to light my dependence on circumstances and my reluctance to accept responsibility. It’s brought to light my love of all things material.  (p146)

God taught Kelley many lessons about patience. Patience is faith that waits. Treatment for childhood leukaemia is a long term process. Even after the words remission were used, chemo had to continue for the remainder of three years. In the midst of their pain and exhaustion, the family kept looking ahead in hope, knowing that they couldn’t have what they wanted, just yet. Living in the western world leads us to expect instant gratification, and the church has also bought into this trap. So often God says to wait. He has good things for us, but we must wait.

There were many things in this book that stretched me. The big issues for me had to do with the nature of faith. It made me realise that there are times when I assume I’m exercising faith, when in reality I’m probably not. It’s just that I become used to the routine, what’s coming up. This is familiarity rather than faith. Faith is about looking to God when the routine is blown, when the expectations are shot, when I can’t control the circumstances. It’s also about recognising God’s hand and provision in the routine and mundane. This book has reminded me that passive faith isn’t really faith at all. Faith is active and we need to fight for it.

As the Apostle Paul wrote to his protege so long ago…

10 … (some) have wandered from the faith and pierced themselves with many griefs. 11 But you, man of God, flee from all this, and pursue righteousness, godliness, faith, love, endurance and gentleness. 12 Fight the good fight of the faith. Take hold of the eternal life to which you were called when you made your good confession in the presence of many witnesses.  (1 Timothy 6:10-12)

Trust me I’m a Cancer Patient

trust-me-im-a-cancer-patientTrust Me I’m a Doctor Cancer Patient by Wesley Finegan is a detailed manual for understandings symptoms of cancer, and it’s various treatments and side effects. Finegan worked for a number of years as a doctor with an interest in patients with cancer, before being appointed as a consultant in palliative medicine. Three years later, he became a cancer patient himself. People suggested that he would know all about this, but he had never been a patient before and he still had much to learn. He shares his wisdom in this book. This is the predecessor to his similarly structured book, Being a Cancer Patient’s Carer: A Guide. This book contains forty five chapters and each one follows the same practical structure (TANDEM):

The doctor says
Think
Ask
Note
Do
Explore
More information (pages viii-ix)

The first section of the book is focused on understanding Pain. It discusses the different ways that pain can be assessed, including the classic: ‘What number between 0 and 10 would you give your pain, with 0 being none at all and 10 being the most you could ever imagine?’ I remember being asked this so many times in hospital and usually finding it difficult to differentiate in the 3-7 range. However, there was one occasion when they ripped out my chest drain, that I understood what a 10 felt like!

Good assessment of pain is necessary for good management of pain. In many cases there are a range of pain management options available, so it is important to tune it to its effectiveness, side effects and so on. There has to be teamwork between the patient and doctors to get this right. Others not involved in your health care should not be allowed to interfere or change treatment, as this could be very dangerous. Pain killers need to be very carefully managed. Sometimes there are different means of administering the pain medication. The patient may be able to wear a patch, or be attached to a machine that limits the dose while they self-administer.

The second section of the book documents a long list of Physical Problems that may be associated with the disease or treatments. The list includes: loss of appetite; constipation; depression; diarrhoea; itchiness; sore mouth; difficulty sleeping; constant tiredness; weakness; and many more issues. I can identify personally with all these above. In my case, they are some of the side effects of the chemo, rather than symptoms of the cancer.

The beauty of this book is that you can look up whatever chapters may be relevant at different times. There may be times when I’d look up a number at once, and others that probably wouldn’t get a look in. Many of the chapters contain helpful diagnostic check lists to help you understand what is or isn’t happening to you. You are also encouraged to document pain and symptoms so that you can refer back when things reoccur. This help to recognise patterns, changes, and sometimes alleviate fears when things can be demonstrated to have minimal or temporary impact.

Section three focuses on Personal, Social and Spiritual Problems. Some of these chapters are unlikely to be read in advance by a patient. For example: I am expecting Bad News. You’d have to be very quick off the mark, getting onto this book! However, others offer great advice for further down the track. They deal with some pretty heavy issues, from early ones, such as How to tell my Children the Bad News down the track to I want to make a Will or Euthanasia, living wills (advance directives) and resuscitation.

It’s probably not wise or helpful for people in early stages of cancer to dwell on some of the final chapters. There’s no point and it’s probably not helpful to be rushing into thinking about worst case scenarios. But there will be other chapters in this section worth dipping into early on. Two that have been particularly relevant to me have dealt with thinking through complementary therapies, such as acupuncture, and a chapter on issues relating to returning to work. The 3rd last chapter deals with thinking about spiritual needs. Personally, I wouldn’t leave this until the end, especially in case the end comes earlier than anticipated.

This book would provide an excellent resource for medical students, doctors, nurses and other health professionals engaging with cancer. I’d also recommend families who have someone going through cancer, to get hold of a copy, as a reference book for all to read as relevant.

My own personal breakdown

I’m 50 years of age. I feel 70. My doctor tells me that my body is behaving like a 70 year old. It’s a little scary. Stage IV lung cancer and 15 months of non-stop chemo can do that to you.

The lightest of exercise elevates my heart rate. I get breathless quickly. It’s hard to suck in enough air. It takes nothing to raise a sweat. A crushing feeling in the chest. Shooting pains from the lungs.

I get pins and needles in my feet and hands. Aches in my ankles. Heaviness in the soles of my feet. The signs of peripheral neuropathy. So I only wear shoes when I have to – nothing new there! We reduce the chemo and add some antidepressants. Folic acid and daily cymbalta seems to do the trick.

Headaches are common. A band round the head. Pulsing pain in the temples. Light-headed, dizzy, a cloudy feeling. Couple of panadols, it is.

Blood pressure out of control. Topping the charts one day. Normal the next. Too high overall. Fears of heart failure, strokes, heart attacks. Not to mess around with. We’ll see if daily ramipil antihypertensives bring things down.

Fatigue is growing. I can’t seem to wake up. Some days I spend more time in bed than out of it.

Rashes and redness. Blemishes and acne. Sometimes I feel like a 70 year old going through puberty. The dexamethasone steroids help for a while (don’t tell ASADA), and then we can try some claratine antihistamines, or we can just wait for it to go away.

The weight coming on, then going off, then going on more. Metabolism out of control. Unable to eat. Unable not to eat. The cravings. Self control, diet, careful eating, not too much. Sometimes I think, who cares.

The blood sugar. Getting way too high. Diabetic levels. What next? No lollies, no soft drinks, no chocolate, no jams. That’s all the food groups. What’s left? Exercise more. Get the heart rate up. Burn more sugar. Use up the fuel. I’ll probably have to take a drug for this problem too!

Add an allergic reaction to the contrasts used in the CT scan. Because I came out in hives, they won’t allow me to take it any more, lest I have a more serious anaphylactic reaction.

And then there’s just the overall feeling of being heavily poisoned. Argh!

Where will it stop? When will it stop? I don’t know. But I have a choice.

I can dwell on my problems, be filled with self-pity. I can hide from others, ignore the good, forget God, complain and grumble. I can become a completely selfish pain in the bum. I’ve got a ticket that gives me permission to become a totally self-obsessed whinging prat. It’s called cancer. It lets you get away with all kind of stuff.

Or…

photoI can take responsibility. Get enough sleep and rest. Exercise even when I don’t feel like it. Show restraint with my diet. Be patient when the side effects are worst. Push on with what hurts knowing that it’s an absolute privilege to receive the medical care I have available.

I can rejoice. I can give thanks for my beautiful wife, my fantastic children, my supportive friends, my praying church. I can thank my doctors and nurses. I can praise God for life and hope. I can look outward and love. I can share and give. I can serve and support. I can wonder at the many doors God has opened, for every one that’s closed. I can stop wishing for change and change my wishes. Better still, I can fall on my knees and thank God for his amazing grace to me in the Lord Jesus Christ.

My life is not my own. It was given me by God and I was bought at a price. I’ve already died to myself so that I should live to God. And I can still do this, whatever bits of me don’t work! If God gives me days and months and years, then they are for him. To show perseverance in the face of suffering. To exercise faith in the midst of doubts. To offer kindness when I feel mistreated. To be a friend when I’m lonely. When I am weakest, God can shine through in strength.

I can learn from the Word of God…

Therefore, in order to keep me from becoming conceited, I was given a thorn in my flesh, a messenger of Satan, to torment me. 8 Three times I pleaded with the Lord to take it away from me. 9 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 10 That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. (2 Corinthians 12:7-10)

Journey with cancer 13 Nov 2012 – best week yet

Dear friends and family

Just wanted to share with you briefly about my reaction to the chemo in the past week. There was nothing much different about it, other than getting booked for parking in the wrong place! I was more relaxed this time and succeeded in falling asleep while the poison went in. Prayer, breathing and music all did their job!

A typical post-chemo week involves getting pretty sick sometime in the first 2 days, going downhill for a few more, and getting back to equilibrium somewhere between days 6 and 10. This one was different. Monday, chemo, visiting a wonderful prem baby survivor in NICU, meeting to discuss Shine a light on lung cancer vigil, before having a friend for dinner. Tuesday, I read and wrote all day. Wednesday, I was out and about, doing some writing, and spending time catching up with my father. Thursday, I read Chappo’s book, wrote a review, and had a couple of meetings. Friday, was active. Saturday, I spent the day looking at trailers and thinking about camping, wrote my 100th blog post, and had a great night out with friends. Sunday, went to church, had an old buddy to lunch, and taught a mate how to drive his new espresso machine. Monday, more reading, writing, staff meetings, shopping, people to dinner, family counseling afterwards. Today…

Over a week since chemo and I haven’t been bed-ridden at all! That’s a record! Feeling a bit off – yes. Toxic cloud – yes. Digestion problems – yes. Aches and pains – yes. Chemo brain – oh yes. But otherwise, normal. I probably could have been at work! Wow. Thank you God! What a treat! Grace, Fiona and I all wondered if they’d given me the wrong chemo or the wrong dosage. 🙂 This cancer journey is anything but predictable. It has its stresses and challenges, big time! What happened this time is no guarantee of what’s ahead, but I’ll rejoice in the good times of this past week, and give praise to God for his kindness.

And by the way, if you know our good mate, John Chapman, please pray for him. I understand he’s been in ICU for a few days and isn’t doing too well.

With love,

Dave

Journey with cancer 6 June 2012 – the good, the bad and the ugly

Dear family and friends

feetI’m sitting on my favourite bed, in my favourite room, writing to my favourite people! We’ve just got home from another visit to our oncologist. These are always anxious times and I tend to get fairly stressed around each visit. We were keen to learn about the results of my CT scan on Monday and to talk about what happens next. I’d been feeling more unwell than usual over the past week and we had a few questions to ask.

The good news is that the primary lung cancer has continued to reduce in size. This is a cause for rejoicing and I thank God for the positive benefits of the chemo. The shrinkage is unexpected, given that I’ve been on a maintenance chemo program and we were simply hoping to keep things in check. Six months ago the tumour was 26mm in diameter and it’s now shrunk to only 12mm. It makes me wonder if it can’t keep getting smaller until it vanishes altogether! However, the oncologist doesn’t see this happening and there are other factors involved. Seems bizarre to be held to ransom by something the size of a marble!

The bad news is that there is now clearer evidence of metastases. The cancer isn’t all in one place. Nothing new since the last scans, but evidence of the spread of cancer nonetheless. It would be so good if all the cancer was contained in the one tumour and all they needed to do was operate. Just cut it out! No more cancer! Clean bill of health! Sadly, this isn’t my story. Chemotherapy is designed to attack the cancer wherever it pops up, even in the places you can’t see, and thankfully it seems to have been doing it’s job pretty well.

This brings me to the ugly. Chemo has it’s side-effects and they can be pretty nasty. I’ve catalogued the various symptoms previously. Nausea, constipation, aching, skin rashes, lethargy, and so on, are all pretty standard. At least I’ve got my hair! But, I’ve begun to experience another effect that we need to take seriously… peripheral neuropathy. I get a burning sensation on the soles of my feet and palms of my hands, and it’s been getting worse in the last week or so. It’s a bit like pins and needles and makes my feet and hands feel tingly, hot and heavy. I walked into town the other day and had so much pain in my feet that I considered getting a taxi home. It’s been very concerning because walking is the easiest exercise for me to keep up.

While not a common side effect from my treatment, some patients do experience neuropathy in varying degrees. If ignored, it can leave severe and lasting damage. It’s resulted in some people becoming housebound or confined to a wheelchair.

Our oncologist is concerned by my symptoms and he’s recommended we cease the chemotherapy for a couple of cycles to see if the neuropathy improves. This will mean dropping Alimta, but continuing with the Avastin (which is not a chemo drug). I’m learning more and more that my treatment is a balancing act. You get wins in one area while accepting losses in another. I just want a lot more wins than losses! I’d love to keep charging on, bashing the cancer as hard as I can cope with, but it seems that I’ve found one of my limits already.

If you’re one who prays, then please speak to God about me over the next few weeks. We’d love the respite in chemo to clear up any symptoms of neuropathy AND we don’t want the cancer to grow or spread in this period. I hope this isn’t too much to ask for!

Thank you again for your support and for sharing this journey with us,

With love, Dave (and Fiona)

Journey with cancer 4 June 2012 – a chemo sandwich

It’s now six months since I was diagnosed with cancer. It feels like a landmark of some kind! The good news is I’m alive. The bad news is I sometimes don’t feel like it. Life has become a ‘chemo-sandwich’. I go into hospital and get poisoned, spend three weeks recovering, and then I do it all over again. The challenge is to put some nice stuff into the middle of the sandwich.

Here are some of the enjoyable bits I’ve found in my sandwiches…

  • Going for walks with my wife
  • Being invited out for a meal
  • Reading some good books
  • Sitting on the swing in the backyard, soaking up the sunshine
  • Having a family golf day
  • Sharing coffee with friends
  • Going for walks with the dog
  • Cheering on the Brumbies
  • Preaching at church
  • 10pin bowling with my boys
  • Learning to write (blog posts)
  • Chatting over lunch with friends
  • Catching a couple of fish
  • Visiting the Harley Davidson shop, and dreaming
  • Having a good cry
  • Buying myself a down-filled jacket
  • Going for walks with friends
  • Reading through 2 Corinthians
  • Having friends come to visit
  • Planning a holiday in Queensland
  • Walking the Relay for Life with my family
  • Playing Words with Friends with friends
  • Going out to dinner
  • Staying at home in front of the fire
  • Going for walks on my own
  • Drinking ginger beer
  • Being inspired by others who are also doing it tough
  • Learning more and more what it means to trust God in all things

Thank you once again for sharing our journey. 🙂