Between Worlds

This is going to be a mega one. My laptop broke a few weeks ago and I’ve also had very little processing and quiet time to write everything out, so here’s a long update.

A few weeks ago we went down to The Christie hospital in Manchester to discuss treatment plans. When dealing with cancer, the first thing is to get that cancer into remission, through chemo, radiotherapy and/or surgery. In the case of many cancers, that makes it go away indefinitely. In the case of myeloma, it always comes back – it just takes different time scales with different people. The longest life expectancy given from diagnosis is seven years. In order to help the body stay in remission for as long as possible, if the person can cope with the treatment, they are given an autograft. This is when stem cells (cells that are in their birthing process and are still tiny and uncorrupted by the myeloma) are taken from the body, then the existing bone marrow is heavily reduced through chemotherapy. The new cells get reintroduced to the body and they take over the running of the show as they are healthy and can grow and multiply quickly. This can lengthen the time of remission for a year or two (nobody ever knows how much exactly because nobody knows how long the disease would have taken to come back in that individual anyway) but the myeloma will still always come back. For most myeloma patients, this is the best way forward, as they are generally older (50+), the procedure is safer (99% get through the autograft itself) and it buys them more time. It can even be done twice over the course of a few years.

But...Richard’s situation is different because he’s only 38 and (spine-fracturing tumours and bone marrow cancer aside) he is fit and well. We have the option to go for an allograft, which is when his own bone marrow would be completely eradicated, and replaced by someone else’s (and weirdly enough, is exactly the treatment we ended up going through with Scooby). This process is really dangerous in adults. The chemo that destroys the bone marrow is extremely harsh on the body; then you have to live for several weeks with no functional immune system at all while your body has to grow these new cells; then the new cells have to like and accept the new body that they’ve found themselves in (in the event of this not happening, a process called Graft vs Host disease happens where the immune system starts to attack the organs of the body); then you have to live for months with a new, not quite fully functional immune system that can’t quite fight off infections on its own; and to top it all off, all those bacteria that live in our gut permanently and don’t bother us because our immune system learned to keep them suppressed years ago, will raise up in the face of the new immune system and will have to be fought and subdued all over again. How they ever pull this off with modern medicine, I have no idea, but they do! To get the best chance of getting through it, a sibling donor is the top preference, and Richard’s sister has turned out to be a perfect match, and she is more than willing to donate her cells for this process. Even with the match, the chances of getting through an adult bone marrow transplant is only around 70%.

But...it could be a cure. There’s no guarantee, and statistics are still a bit vague as BMTs are still a fairly new procedure, and the medicine surrounding them is changing all the time, but the doctor at The Christie said 40% of people who’ve had BMTs are still myeloma-free ten years later.

So for the last couple of weeks this is what we have been thinking and praying through, and working out at what point next year it was likely to happen.

But...last week we went in for the result of Richard’s scans on his spine. All year he’s been in extreme pain, and it seemed to get even worse a few weeks ago, but it was thought that it was the after-process from the surgery he had to remove the tumour two months ago. The doctors were really pleased that his para-protein levels had fallen dramatically since the chemo began, and that was a sure sign that the cancer was already coming under the control of the chemo. But the scan showed a whole different story. Not only has the original tumour returned, but with extra material on the spine too, and in a very short space of time. It’s like it hasn’t even recognised the chemo at all. It’s baffling for the medical team how the body can be responding to and ignoring the treatment all at the same time, but they have acted very quickly to the situation to try and fight back. Richard was taken straight into hospital and given radiotherapy on his spine to target the tumours, and his daily medication has been changed.

On Thursday he will go into surgery to have a central line put in, and then he will be treated with some of the most severe chemo you can have, through that line. It will be a four day stay, and it will be repeated four weeks later. If it’s successful and the cancer responds, then we’re hoping the transplant will happen early next year.

The consultant has said over and over how unlucky we are – firstly that the diagnosis took a long time (they knew it must be there but they couldn’t get evidence of it no matter how hard they tried), then that the first round of chemo caused complications through the pulmonary embolisms, and now that the second round has not been able to affect the cancer. I know that it looks like that in this part of our story, but in the rest of it, nothing could be further from the truth.

Right now things are going amazingly well. The kids are thriving at home and at school, our church is stronger than it’s ever been, we’ve completed the work on our new church building and have moved in, and we’re part of an amazing supportive community. Our vision to see people grow and thrive and get closer to God is actually happening and we’re loving it. It’s like living in two parallel worlds most of the time; one where we are eating together as a family, and going for days out, and meeting up with friends, and leading meetings, and preaching, and in this one my husband is upright and in pain but still functioning and active and effective at everything he turns his hand to; the other world is one of waiting rooms and fuzzy pictures on screens and bags of medication, and life-changing news and a-rock-and-a-hard-place decisions, and hospital gowns.

I think some people wonder how we’re still engaging with that first world while handling the second, but really, why not? When we first faced the possibility back in March of a myeloma diagnosis, Richard asked himself the question “If I only had two years of my life left, how would I use it?” The answers were: to nurture and invest in family, to build church, to help people find God, to train up leaders who can continue not just to run church but to grow and develop it even further, which in turn then nurtures and invests into our family. In other words: exactly what we’re already doing. How many other people are ‘lucky’ enough to say that?

I’ve grown up with the knowledge that this life is not just ‘it’. This is just a tiny bit of the bigger picture. There’s been chunks of time when I wasn’t so sure if it was truth or just wishful thinking, but then when I looked around I couldn’t see anything else that was worth living and dying for, and building my life upon, so I just stuck with walking down the path I’d been taught to walk down. And I’m so glad I did. By the time Scooby died, it was no longer a distant hope anymore, I feel like it’s something that I’ve been living and breathing and experiencing every day: eternity. Knowing that before me there was God and after me there is God, and so why should I fear anything that can happen in this life? We’ve already faced the worst and it bruised and pierced and tore pieces of us away, but it didn’t destroy us. When everything you are is built into Jesus (the author of life and the defeater of death, hello) and you’ve already given Him your life, you then have total freedom – fear has no hold on you, loss won’t break you, you are never alone, and you always have hope and purpose, no matter what you go through. The pain is real, and many days I wake up sick to the stomach with what we have to face that day, and I cannot and do not want to think about a future for my children without their father in it, but none of that stuff can destroy me. That has nothing to do with any kind of strength that comes from me, it’s all about what Jesus can do in your life if you let Him.

This stuff is never more real than when you’re reminded just how uncertain and unfair this life is. And with each ‘unlucky’ step that’s been unfolded to us in the doctor’s office, along with the tears and the confusion about why this is all happening, is the knowledge that actually no matter how increasingly bleak the prognosis is, if the author of life and defeater of death wants my husband to stick around on this earth for a long time, then He will make that happen, no matter what the odds.

Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword?  No, in all these things we are more than conquerors through him who loved us.  For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.

Romans 8v35-39