I love a free offer. But when it’s another life-limiting disease I should have read the label before I put it in my shopping basket. Greed will be my downfall.
The new recruit goes under the name Polyarteritis Nordosa. Polyarteritis Nordosa is a rare inflammation of the arteries, caused by a malfunctioning immune system. My immune system was sheltering between a rock and a hard place, killing off stray cancer cells with accurate sniper fire. Now it’s come out all guns blazing, shooting at the cancer, the drug that keeps the cancer stable, or anything else in its sights. Imagine Gunfight at the OK Corral meets Reservoir Dogs; apart from Val Kilmer, it aint a pretty sight.
Polyarteritis Nordosa showed up for duty about a year ago, bringing with it mysterious bruises that wouldn’t fade, and fingertip-size red lesions on my legs. It quickly added a random purple pattern to my thighs which looked like crazy-paving, and, just for good measure, a strong dose of swollen aching joints and hit-the-brick-wall-fatigue. If this was cancer’s new buddy I hoped the courtship would be brief, but alas, they’ve become besties.
The London oncology professor diagnosed the problem at first sight, but it took months of different opinions, investigations and skin biopsies to confirm his suspicion. Now he and a wonderful London rheumatology professor are working (gloved) hand-in-hand to stabilise my condition. I was a multi-disciplinary medical case, now I’m a multi-professor medical case.
The inflammatory levels in my blood are ridiculously high. I’m an over-achiever but this is silly even for me. Large doses of steroids reduced the inflammation but caused a major flare-up when I came off them, and now I’m on longer-term low dose steroids. I have a love-hate relationship with steroids, which varies from trying to conquer the world with manic activity, to sleeplessness and mood swings that drive me crazy. Or crazier.
Playing host to two serious diseases isn’t a barrel of laughs but it does have its lighter moments. I wonder how/if they consider eachother; do they fight to invade my body space or do they divvy-up areas aren’t already diminished and toss a coin? If my waistline is the border, will cancer cells attempt risky crossings in a migrant dinghy to reach my pelvis, and will Polyarteritis Nordosa send an army to my upper torso, like the Romans marching north to crazy-pave Hadrian’s Wall?
Last week I had a phone consultation with the rheumatology professor. We both agreed there wasn’t much to do at the moment except watch the situation, which I’ve learnt over the years means they’re working on best-guess scenario. I don’t have a problem with that. When you go past your expiry date you can’t expect instant answers because there aren’t any. I never set out to be pioneer woman, in fact I’ve always thought this heap of shit is pretty much wasted on me because I’ve got more important things to do, but hey, next person in line gets the benefit of my experiences, and that’s the most positive spin I can muster for this situation.
Before we finished the consultation I asked the professor if he was happy to continue overseeing my treatment.
“Yes of course,” he replied. “I’m more than happy. I specialize in rare and esoteric diseases, which you have, and I’m very interested in your case.”
“I seem to specialize in them too,” I replied flippantly, and he laughed out loud; the rheumatologist has a similarly dry sense of humour.
For some reason, between thanking him and scheduling our next appointment, the word esoteric escaped me and I thought he said erotic. Rare and erotic disease.
“What did he say?” asked Mark as I put the phone down.
“I have a rare and erotic disease.” I replied, shrugging my shoulders nonchalantly. I quite liked being rare and erotic. For a moment I had visions of turning into a burlesque dancer until I remembered my crazy-paved thighs.
“What did he say?” Texted my friend.
“I have a rare and erotic disease.” I texted back.
She replied with **???!!
I feel a tad disloyal towards the cancer. We’ve been together for so long, how do I explain I’m having a fling with a younger disease? I’m no cougar but Polyarteritis Nordosa sounds more outlandish than stage 4 cancer, and definitely more erotic!
My plan for terminal cancer was neater than this. I’d have some good times, then things would get worse, then worse would become the good times. Eventually my organs would pack-up and I’d die, and I hadn’t calculated on something else elbowing its way in. After all this time, cancer should at least get the credit because having an understudy steal the limelight as the curtain falls would be ironic. I hadn’t expected to die of something randomly erotic, but maybe I’d prefer multi orgasm failure to multi organ failure? Just sayin’.