In my experience – which is already considerable, given the Crohn’s Disease – there are four distinct phases to a diagnostic test.
There’s the anxiety involved in waiting to see if insurance will cover the cost. Then there’s the prep, always involving abstinence from food and kegstanding chemicals. The main event is, of course, the procedure itself. Finally, there’s some sort of aftermath stemming from some or all of those first three things. So I admit, I went into the exploratory tests for the cancer with a fair degree of certainty. I didn’t know what the diagnosis was going to be, but I thought I knew the path I’d take to get there.
First let me say – in fairness – that Cigna ponied up for the first few tests without question. It did not occur to me that they’d do otherwise … until they did. Diagnostically speaking, Cigna took my doctors and I right up to the ten-yard line and then they dithered. For a week. One of my BFFs said, “Pay out of pocket and settle up afterwards.” That sounded feasible until we learned the test in question would cost us $24,000.
The preparation stage did not go smoothly, either. For me, oral contrast tastes like a gone-over piña colada mixed with dish soap, and it slides down the back of my throat like snot. This last time I drank it, I had some sort of allergic reaction. I ended up in bathroom, not the testing suite. There was zero chance I could lie still for the hour-long scan without – shall we say – losing containment. I barely made the twenty-minute trip home.
The initial tests themselves were harrowing. I drew the short straw for the MRE: instead of the whirring Stargate ring I got the submarine tube, so tight against my face I could feel the chill from the metal lining transferring to the tip of my nose. I narrowly avoided a massive anxiety attack from having to hold my breath just a little too long – time, and time, and time again – while feeling utterly entombed.
After that, there was the biopsy. I had never done one of those before; total ignorance turned out to be bliss. Even with generous and numerous applications of lidocaine, I felt that massive needle skewer my lymph node. I was just too doped up to do anything about it – but I was awake enough to register the shock of violation and the blazing stabbing pain, along with the realization that I was completely helpless.
That’s the point at which I found out I have cancer: after three tests that just plain terrified me, each in an unique way. That’s when I understood – I really understood – that everything I’ve experienced as a person with ordinary chronic illness is irrelevant to having cancer.
Cigna is going to hover over me the whole time, bringing the threat of impending financial disaster rather than reassurance. The forthcoming procedures – radiation and chemotherapy – are looming large in my oversensitized imagination. First I’ll be chased across ice by lasers, like James Bond in Die Another Day. Then I’ll be strapped to a rack and pumped full of combustible chemicals, like Pepper in Iron Man 3.
So, what do I need to get through this? A new list. New expectations. New assumptions. New goals, too, now that I really think about it. Taken altogether, I need a new mindset and I’ve already discovered that I don’t have to stretch that far to get started. In addition to all the unpleasantness and discomfort I’ve already experienced, I have also had moments of profound and heart-wrenching positivity.
For starters, Cigna is so predictably awful, the H.R. department at Steve’s company has assigned a staff member to dog their every move. I don’t know who this woman is, but she’s already proved her valor and her effectiveness. When I’ve come out the other side of this experience, I’m buying her flowers and a bottle of high-quality alcohol.
I also want to say my doctors are already surprising me, in a good way, with their problem-solving skills. I got through the MRE process because they put their heads together and found a workable alternative to the contrast that made me sick: Metamucil. Over-the-counter, perfectly ordinary, wholly gulpable Metamucil. It. Tasted. Awesome.
The final diagnostic test summed up everything I’m trying to say, and hoping to experience, as I go forward. It’s also the reason for the title of this blog. After both MREs and the biopsy led to a diagnosis of cancer, I still needed a PET scan to determine the extent of the cancer. To be honest, I headed into that test feeling defeated and frightened: it loomed as large and as insurmountable in my mind as the cancer itself. What fresh hell would it entail, preparation- and procedure-wise, if its purpose was finding all other cancerous masses elsewhere in my body?
In a word, there wasn’t any hell at all: there was sausage. The preparation for a PET scan is – I kid you not – to gorge on as much meat and as many eggs as humanly possible, the night before and the morning of. I will never forget the stern voice of the oncology nurse telling me, in no uncertain terms, that I must wake myself up at 6 A.M. and eat sausage. Lots of it.
The morning of the test, I stood in front of the microwave in my socks and nightgown, watching that sausage cook, and I wept. I knew the test was approved and paid for. My husband had the day off to take me. My stomach was growling with hunger, not squirching with anxiety or contrast-induced trauma. One of the cats twined around my ankles and purred while the microwave hummed and the sunlight shifted from lavender to gold.
It was as perfect a moment of peace and comfort as I have ever felt, during a stretch of time when I was steeling myself for the possibility of more bone-deep disappointment. I cried because so many people came together to give me that moment of respite – some of whom I would never know or meet. I cried because that moment was medicine, real healing medicine, and I just hadn’t seen it coming.
So: that’s the reason why this blog is called Medicinal Sausage. My nerdy-data driven brain wants precedence when dealing with the unknown. My fears are clearly shaped by my previous experiences. There are few, if any, scarier words in the English language when it comes to medical prediction than ‘cancer.’ And yet, there are, there have been – there are going to be – moments of generosity and bliss in the midst of all this madness. I know they are coming, too, and that knowledge is making all the difference in the world.
medicinal sausage 