Susan’s got two of them at all times, and many more every time she lands in the hospital, which is where she is (again) as I write this.
The permanent ones drain her kidneys. You see, cancer comes in every shape and size. The tumors in her lungs and liver are nodules, clearly visible (and measurable) on scans. The cancer that affects her kidneys is, as her oncologist described it, more of a network of filaments, a creeping, probing mesh that I envision as a strangler fig, which wraps around a host tree and encircles its trunk and roots, starving it of water and nutrients until the host eventually dies. In Susan’s case, this particular cancerous strangler fig has squeezed her ureters shut, cutting off flow from the kidneys to the bladder and necessitating a urostomy.
What that entails is having two holes, or stoma, on her back, from which tubes issue. The tubes are implanted in her kidneys, and they bypass the blocked ureters and drain directly into bags on her back, which in turn drain into larger bags which can be emptied. Her nighttime bags are large and have to be dragged around like Jacob Marley’s chains. The daytime bags are dainty in comparison, and fit into nifty slots in netting she carries on her calves. Needless to say she stays away from short skirts these days, but the tubing is clearly visible under anything she wears that isn’t loose and baggy. And anyone who knows my wife knows that loose and baggy has never been her style. We had to say goodbye to lots of slinky black dresses a while back.
The upside is that she no longer needs to get up in the middle of the night to pee, as her kidneys drain directly into the bags. So that’s a relief. The downside is that she has fucking tubes sticking out of her back that drain directly into Jacob Marley’s chains.
And the urostomies have been problematic, to say the least. Except for an intestinal blockage, every trip to the emergency room, and there have been way too many and her stays way too long, has involved problems with her kidneys. Having a direct line from outside to inside your body tends to cause infection. The tubes also come loose from the kidneys, as they’re just soft, spongy, squishy little organs that apparently lack the moral fortitude to at least provide a secure anchorage, and so the tubes can come loose, which is what precipitated our hospital visit yesterday.
Then there are the routine blockages. Even when the tubes are hanging in there, ensconced serenely in the kidneys, they can and do become blocked. This is caused by the same crystalline conglomerations of mineral salts that cause kidney stones. The solution is to flush the tubes with saline. Exactly the same thing you’d use with your contact lenses.
Susan knows there’s a blockage when urine production in one of her bags is limited and, more importantly, when she suffers excruciating pain in her kidneys. You fill a sterilized syringe (but without a needle) with saline, insert it in the end of the catheter tube, and push. And push. Then you soak the end of the tube in extremely hot water, bang it against the edge of the sink, and hope that crystallized urine comes out. Sometimes it’s just funky gunk that slides out, and believe me the less said about that the better. But if you’re lucky you get crystals and then the saline goes in just fine, flushing the tube.
As happens on occasion, the blockage is persistent, complete. You press on the syringe until it breaks, get another syringe, and try again. And again. You contemplate what this means, and it always means another trip to the ER. You try again. This last time we cleared the blockage and it was like winning the lottery. Kidney emptied, no trip to the ER, high fives all around.
Today as I was changing the disks which adhere to her back and allow bags to be attached, I noticed that the tube coming from her right kidney was a) way too long, and b) just didn’t look quite right. (And let me say this now, I’m pretty squeamish about bodily functions and generally suffer from an overactive gag reflex, but I have no problem with getting intimate with the stomas on Susan’s back. I sniff. ‘Hmm…seems a little stinky. Let’s keep an eye on this. Hmm…your pee looks a little red. Let’s keep an eye on that.’) And on this occasion the tube just slunk right out of the stoma and ended up in my hand. Oh shit. All other plans go on hold and we prepare an overnight bag for the hospital.
So there she is, waiting for the tube to be replaced in the morning, or whenever they can schedule it. And let me say this now, if you or someone you love is getting ready to have a urostomy, please don’t allow this to put you in a panic. Our experiences are in no way indicative of what yours might be. Most urostomies are temporary and the blockage is reversed. Susan’s situation is unusual, but it is, ultimately, untenable. We can’t keep ending up in the emergency room on a weekly basis – especially while covid-19 is still skulking around in the general population.
So, tubes. I’ve watched my wife lying in a hospital bed with tubes sticking out of every orifice she was born with and several she wasn’t. Tubes in her arms delivering glucose, morphine, acyclovir, antibiotics – a whole unholy yet necessary cocktail of medicaments. I’ve watched a pump suck green bile from her stomach through tubes threaded through her nose and sinuses. I’ve traced with my fingertips the contours of the portacath inserted under her skin, a plastic device in her chest connected to a tube inserted directly into her heart – her superior vena cava to be precise – for taking blood and pumping in chemotherapy drugs, among other things. Lots and lots of tubes.
But don’t get me wrong. Modern medicine is a wondrous thing and the tubes and other interventions she’s had have no doubt extended her life and definitely even saved it on occasion. But she’s had enough of the fucking tubes.
Just today we were face-timing (I guess that’s a verb now), and a doctor came into her room. Susan asked about getting rid of just one, one, of the urostomy tubes. The answer? No can do. The cancer is constricting both ureters like a python suffocating its prey. So the tubes stay, and she simply has to learn to live with them. Live with them being the operative phrase. Do the tubes suck? Absolutely. But the covid-19 world is learning to live with a new normal. This is just ours.