Lately, there are days when I both amuse and worry myself in weird turns about the "housekeeping" I think I should do before I die. Like, "whose spoons are these in my dinnerware drawer" or "to whom do I return that lasagna tray" before I kick off. "What neighbor did I borrow this tool from, and does he still remember I have it?"
Alternately, I worry about the garage. That cavernous monster down below with dead relative detritus and old clothes bound for Goodwill and broken furniture for which I simply need to buy a dowel to repair.
I’ve got the will done – just need to finalize and sign it. The Advanced Care Directive is in place at the hospital, with my kids, and in the hands of my attorney. I’ve got car titles established so that there is a legitimate right of survivorship should I go more quickly than I expect.
At fifty-one, these are good tasks to finish. But what have I forgotten to do (except willfully, as in the case of the garage)? It’s a bit like watching Pitch Black in 3-D and realizing that you are the one without the light, there’s no one to advise you, and the screaming critters are just over the hill. You think there’s more light, but you can’t remember where it is. No Riddick with night vision. The damn ship has left the planet.
The amusement and worry wrap themselves into another plot, unanticipated and unfilmed. The Bucket List probably has more to recommend it. Such a dream.
"Housekeeping" is a nuisance urge, an understandable one perhaps, when you’ve been given a terminal diagnosis. Funny word, that. Terminal. Like there’s a long hallway ahead that you walk down when you die. It has no door, no real departure gate. The hallway just ends when you get there and you can’t walk back. Oh, wait.
Perhaps the word terminal is invested in the idea of dying as that last real point, a kind of punctuation point, the final dot in life that acts like a period at the end of the final earthly sentence you’ll live? Not a semicolon, where you have the chance after you’ve punctuated to write another full sentence to add to the story. But "terminal" – no, "Terminal". Let’s make that a capital letter again. Punctuate it.
These words we have for diagnosis, and ultimately death. Just for kicks, the 2009 ICD-9-CM Diagnosis Code used to describe my condition (cardiac angiosarcoma) on my insurance and benefit claims forms is 198.89: Secondary malignant neoplasm of other specified sites. I just dropped in to see what condition my condition was in. Yeah, yeah, oh yeah.
With a diagnosis code like that for such a...Terminal disease, you’d think the coders would prefer more specificity. Something like "she has a damn tumor in her heart and it’s spread to her lungs and that metastasis happened in the space of around three months, and none of the doctors or radiologists or specialists she saw found it in multiple scans, echocardiograms, tests, or saw it improve with any treatment given over the course of eight months before diagnosis, for chrissake! Let’s give the diagnosis a number like 3.147888". Not quite pi. There. That new and personalized coding doesn’t help anyone, but I feel better.
I find it odd that my insurance is being billed, and that I’m defined on medical charts as having a secondary neoplasm, but the required coding doesn’t detail where the primary source of cancer is. No wonder there’s little research being done on this stuff. The comprehensive information about my chain of random treatments and migration to diagnostic, targeted treatments over the course of the last year is stored on servers at my insurance company. The information they have, beyond the actual procedures and drugs being billed, is that what I have, what I have been coded as, is...Terminal. Malignant in a secondary fashion. Imagine.
Of course, three years ago when I had no insurance, I would have walked into the local emergency room and never been diagnosed with this at all because few health practitioners look for this and fewer pay attention to a (dare I state "female"?) patient with a set of random complaints. I might have walked out with a prescription for Vicodan and Zithromax for five days and a bill in my mailbox in two weeks for $2000 to $3000. Frankly, I would have died before the hospital sent me to collections. No, really. It’s not that I would be ashamed of being sent to collections, though there’s that, and I have been. It’s that I would have died before the hospital took such financial action.
But I’m insured now. So I'm amused and worried as I wonder how long the insurance will hold out. Will I maintain my coverage if some bold surgeon somewhere in these United States decides I’m a candidate for surgery down the road, should the tumor shrink enough? My code is 198.89; might the proposed procedure be determined to be too experimental? Am I too Terminal?
Heck. I was all set to write today on how to be your own patient advocate. How important it is to research and study and make certain that you are prepared to handle your own responsibilities as an informed questioner when you need to. Sure as shooting, we all wind up in the health care system at some point in our lives. In life, in parenting, in politics, in health, at work, we should be prepared to ask questions. In death, too.
I decided, instead, to do some housekeeping. Sometimes it’s a good exercise to do a sweep of the imagination and push around the amusing and worrisome dust mites. Sometimes it's good to get on the broom and ride it like a hobby-horse.
Now if I could just figure whose spoons those are.
Note: (ICD-9 CM codes stand for International Classification of Diseases, Clinical Modification and are explained further on the Centers for Disease Control and Prevention website.)