Journey with cancer 1 Mar 2012

Dear family and friends

Once again, it is with deep gratitude for your prayers and love that we start this letter. You’re prayers have been answered in 3 ways:

1. We are so aware that it is your prayers that are continuing to sustain us in relatively good spirits and in complete confidence in God.

Taking David to chemo was one of the hardest things I’ve ever done – like taking the kids for vaccination, but far worse. You know it’s good for them, but the pain inflicted! We understand those who go into denial. It would have been so much nicer to have stayed on holidays at Burrill Pines. We loved being there for our few days as we find it one of God’s most beautiful peaceful places on the south coast.

Taking him 3 weeks later for the second time was no easier, knowing from experience, not just fear, what lay ahead. It doesn’t sound that bad: he sits in a chair for five hours while they put bags of fluids into his arm. First time he watched movies, second time he had a chat with his neighbour. For the first 24 hours he feels okay. After that he starts feeling poisoned, which he has been. Without going into graphic detail, it messes up his stomach, gives him headaches, skin rashes, aches, fatigue and more, making him feel like he’s got a bad dose of the flu with trouble sleeping. By day 10 he’s starting to feel less toxic, and starts regaining the weight he’s lost.

Friends have been tempting him with all sorts of treats: ginger beer, coffee, chocolate slice, chinese herbs and acupuncture, ‘words with friends’, walks, books to read, movies to watch, sermons to listen to, good conversation. When he’s sick, we feel like we’re holding our breath, wondering if this poisoning is worth it. When he starts feeling better, and starts doing more, it’s hard to believe he’s got cancer, except when there’s an abrupt reminder because of pain, or blood test, scan due, visit to oncologist etc. Today he’s preparing a sermon for this Sunday – a commissioning service for Marcus that had been planned for December last year! But next Thursday preparing a sermon will be an impossibility, as the chemo cycle starts again.

Answer to prayer no 2:

Monday he had a progress scan. After 6 weeks of holding our breath – no wonder I was looking blue and feeling dizzy – the scan has shown that the tumour has shrunk from 26 mm to 18mm (such a small, little nasty).

After visiting our oncologist today, it means we continue with this particular course of standard chemotherapy (carboplatinum, alimpta, avastin for those who want to know – the latter two being current state of the art treatment) for another two cycles of one day on a drip every three weeks. We’ll then have another progress scan, and consider our maintenance options.

Our oncologist didn’t encourage us to breathe easy, so I guess we’ll be holding our breath again. However, praise God for His gracious answer thus far, and read on, for what gives us more hope…

Amazing answer to prayer no 3:

We asked you early on pray that David might have one of 2 receptors. The EGFR, which is now routinely tested for, was negative. It was always unlikely because it is most prevalent in younger Asian women. But we have discovered David is ALK positive! (And thank God we asked for this to be tested because it’s not routine to test). This is a rare (3-5%) genetic mutation that is the driver behind David’s cancer, ie. causing the cells to grow out of control. Just why this ALK gene has flipped itself upside down and fused where it shouldn’t have, is still not yet known.

This mutation was only discovered in 2007 and is still under investigation. There are new drugs, still being tested which aim to turn this driver off, which have been showing some very positive results since they first started trialling it in 2008. They’re up to phase 3 of the trials now, answering the very questions that we’re asking: which treatment is more effective? Unfortunately we were not able to be included in this trial, but our treatment is very similar and will allow us to, hopefully, use the new drug Crizotinib to kick the driver out when David’s cancer stops responding to the standard chemotherapy.

This new drug is not a cure either, but results seem to show that it can work more effectively and for longer before resistance builds up. This is also being studied, along with another even newer drug which is just starting to be trialled in the US and England (but not Australia, tho the director of the pharmaceutical company was just lovely when I emailed him.)

For those who want to understand more fully than this simple explanation see a link sent by a kind oncologist in Melbourne. He’s the Aussie speaking in the video.

http://www.oncologytube.com/index.php?page=videos&section=view&vid_id=102199

And just praise God with us for scientists who are so clever! I’ve always agreed with whoever said that science was thinking God’s thoughts after Him. It must be so exciting to be on the cutting edge of science like this and hopeful for us being potentially on the cutting edge of new designer drugs.

All this means, God willing, that though not medically curable, David’s cancer might be able to be managed for significantly longer than we were previously given hope for. We’ve been inspired by stories on a cancer forum of the survival of those on Crizotinib and the more normal lifestyle that can be lived.

Praise God for this hope and pray it is realised: longer life for His glory, as described in Phil 1: 19-26 (and take note of the challenge to you, dear reader of verses 27-30.) We’ve enjoyed reading Philippians as a family recently. 1:21 points out the win/win situation we find ourselves in; 2: 1-11 has been the inspiration for my life; 2:14 is a great verse to quote to squabbling kids; Phil 3:7-14 is inspirational for our circumstances now; and 4:4-8 continues to be a great source of challenge and comfort. The peace I feel can only be the precious gift of God to me in this time, in answer to your prayers.

We’ve also enjoyed reading some good books: ‘Suffering Well’ by Paul Grimmond helps us reflect on where is God in all this, and ‘Naked God’ by Martin Ayers is a good read for sceptics.

But we also hurt for those around us who’re also suffering. There are a number of close friends with medical conditions, whom we pray for regularly. We’d like to encourage you to think about who you know that might be struggling with serious illness, and uphold them to God. Please also pray for David, for opportunities David has to share his faith and hope. Pray that we will continue to serve our church family in their grief and joys. And pray for me as I seek to care for my patients, in their sickness and the trials of life.

We are so thankful to our church, Crossroads, for their care for us. David had the opportunity to speak for 15 mins or so at a special church family meeting on Monday night. He shared his appreciation of being able to serve the church as senior pastor these past 16 year. He thanked many whom he’d worked with. He shared of the shock and heartache of being diagnosed with cancer, the time in hospital, the struggles, facing his own mortality and more. The pastoral staff and the elders specifically prayed for David to be healed and to honour God with his life.

David has also been welcomed to continue serving in ministry at Crossroads as he is able. He is excited to be able to speak this weekend. Obviously he is going through a bit of an identity crisis (not too badly!) as his life has been so focused on ministry leadership for so long. He has been thinking of writing a blog or something, but hasn’t got anything off the ground yet. [My letters are getting it launched for him!] The Brumbies have also welcomed David back as team chaplain. They have been very supportive of David and our family over the past 3 months, and it was great to be able to go to a game together again last week. Jake White has welcomed David’s involvement with the team and he is hoping to have a positive impact on the lives of many. He had the opportunity to share with the whole squad recently.

Our children continue to be an amazing source of joy and encouragement. Their visits and calls. The joy of conversation and praying together. Their sports, musicals, friends, youth group, activities, and their faith and struggles. Even organising a team of teenagers to raise money for cancer research through the Cancer Council “Relay for Life”.

Thank you all for your love, and remember God loves you more than you could ever imagine.

Love Fiona (and Dave)