May 20, 2015
The trick is to keep breathing
“What the fuck?” seems to be most people’s reaction when I tell them I have cancer. Fair enough: that continues to be my over-riding response, too. To add injury to insult, I’ve got myeloma, typically the preserve of people in their seventh decade of life, and with no convincing environmental risk factors. Myeloma is considered treatable, but not curable. It’s a blood cancer, or more accurately an immune system cancer, affecting cells that by their very nature proliferate and then lie dormant, so it doesn’t respond well to the cell-division-smashing sledgehammer of typical cancer treatment.
That’s the bad news. The good news (in the circumstances) is that people don’t typically die of the myeloma itself, but rather from its complications. It causes anaemia, calcium mobilisation from bones, immune dysfunction, renal failure. I’ve got none of those; in short, I’m not the median patient, and thanks to an eagle-eyed GP I’ve been caught very early (albeit, as it turns out, still with around 75% of my bone marrow affected).
Treatment for myeloma is no walk in the park. I’m currently in the fourth week of low-dose chemotherapy that will continue for for a couple more months. Then I get the big guns of modern medicine. My bone-marrow stem cells harvested to keep them safe, then intensive chemotherapy that will make my hair fall out and my immune system disappear. The stem cells go back in after that, and everyone treats me with kid gloves while they grow back and reboot my immune system and a number of other physiological processed that I’ve grown to be fond of. Hopefully, along the way, most of the cancer cells go pop. Statistically, the chance that ALL of them will vanish is practically nil. Clinical data for myeloma is heavily biased towards people in the aforementioned seventh decade of life. Less than ten percent of patients are even close to my age (indeed, I’m apparently the youngest person ever treated for it at Waikato hospital), so judging exactly what all this means for me personally is quite difficult. I incline towards accepting the balance of risk and benefit for various treatments, but taking survival rates and specific prognostications with a pinch of salt.
I’ll probably never know what antigen first made this particular line of cells proliferate, or what combination of environmental factors, bad luck and thermodynamics caused them to lose the instruction sheet on when they should stop, nor will I ever know why my immune system didn’t head them off at the pass. I’ve crawled under houses in the dirty old Dickensian part of Sydney, breathed plenty of filthy unregulated traffic fumes in Auckland, and been variously up to my elbows in epoxy resin, filthy combinations of oil and grease, and a wide variety of solvents, over the years. None of which makes me at all unusual for a Kiwi male. I don’t think I’ve had any blood tests that would have picked this up since I was about 19, so maybe it’s been bubbling away for years. Or maybe my exhaustion during several bits of 2013 was a symptom of this roaring into life, rather than long hours of work and a young baby as I put it down to at the time. I’ll probably never know, there’s nothing I can do about it, and it wouldn’t make any difference if I had known at the time.
I’m determined to give this the awesome respect due to a cancer that’s considered incurable, but I refuse to be scared of it. I’ve alway been a pragmatic existentialist: one day I’m going to die. Given my family history, I might have quietly expected to live into my eighties or even beyond, but I couldn’t rely on that. Nobody can. I feel like I’m on the right side of enough clinical factors to push me out beyond the median ten-year median survival that the most recent reviews are quoting for this disease, and that puts me into the realm where treatments that aren’t even in clinical trials at the moment will be becoming mainstream. I’m playing a numbers game, and while I may not get to collect my Kiwisaver money, I do hope to see my son grow up.
I’m profoundly grateful to be living in a country where nobody is going to ask if I can pay for this, where nobody’s ego or quarterly return is reliant on me getting a particular treatment, rather than the most appropriate one. I’m also profoundly grateful for the support and love that’s come my way from friends and family all over the world, as they’ve gotten hear the news. Some of you may feel like you’re a long way away, but hearing that you’re concerned for me and thinking of me really does make a difference. Thank-you.