I blog this with my wife’s permission.
She doesn’t suffer from cancer. In at least one way, it’s worse: because the least a cancer diagnosis will give you is a timeline. “If you last five years…”
An aside: someone I liked very well nearly made it to the five years. Not quite. He was a large, fair red-head who worked as a roadie for Jands Concert Productions in the 1980s. He was so strong that when Bruce Springsteen toured here for “Born in the USA” – I am not making this up – the tame Teamsters on the tour complained. This kid, “Young Shane” as I normally called him, would blithely man-handle hundred-kilogram loudspeakers past their strictly-maintained hand-off cordons. (One man in the truck; one man on the ramp; one man to collect; one man to take the speaker to the stage area. He didn’t care. He could, as he demonstrated to me on a $50 bet, dead-lift the speaker). Shane had his last skin cancer examination three months short of the magic mark, and died within six. Shit happens.
Ms T doesn’t have cancer – except as a side-effect of her treatments. However, because her disease is one of the immune system, there’s a creepy commonality of treatment.
Her immune system wants to destroy her large arteries. Since some bits of the vascular system are very important – you can make do sans an arm or leg, but the carotid, aorta, celiac or renal aren’t negotiable – she cops seriously heavy drugs to kill the immune system and keep the arteries open.
Some of the drugs are exactly the same as some cancer patients. Cyclphosphamide, for example, is “gold standard” for vasculitis – and is also used for various lymphatic cancers.
That’s the current chemo Ms T is getting. It’s working just fine in some ways, but – may I emphasise this is with her permission and blessing – the pink-ribboners, the popularisers of cancer, the story-tellers, the fundraisers – neglect to break the big taboo.
You. Might. Shit. Yourself.
This, in her opinion, far outweighs the weight loss, hair loss, or breakfast loss. It’s the loss of the emblem of maturity, of self-control, of humanity. The sudden change of clothes, the endless washing-machine rinses, the utter humiliation – and it’s on the public taboo-list.
Lost your hair? Someone has a groovy fund-raising bandana (as long as you have a fund-raiser-friendly disease that has a bandana to sell). Lost weight? There are even people to advocate pot to revive your appetite (I approve, by the way, but that’s not in this discussion). When the treatment stops, your lost muscle-mass will return, especially if you sign on with the right shouty boot-camp group led by a sloping-forehead paid more per hour than you can hope to earn if you’re among the chronically-ill.
Lost continence? Go buy a pack of Depend, and for pity’s sake, don’t talk about it.
If you talk about shitting yourself as a side-effect of medication, even if it only ever happens in the privacy of your own home (or, about four days out from an infusion, the privacy of your bed), you’ll spoil the narrative. The “plucky” narrative. The “you can win this” narrative. The narrative that glorifies dignity over actually surviving.
The narrative says: If you’re clean, we can glorify your dead body with eulogies, we can re-invent your wonderful struggle against impossible odds, we can elevate your loves to Olympus. But nobody every made a god or goddess out of shit.
And for us, the mortals who, for love and nothing else, live with the real side-effects of chemotherapy – from the highs of temporary remission through the frights of incidental cancers, down to the lows of incontinence – there are no laurels. There’s only the business of dropping clothing into the washer for a pre-wash rinse.
I would do it ten times over, my love. Because it’s you. Love will survive.
That, at least, I promise.