A Yuletide Carol

When you have a terminal illness during the holidays, you are haunted by your own ghost.

As you go through each holiday tradition and ritual, adjustments are made to accommodate your more limited capabilities. There are discussions about who should eventually take over certain responsibilities, and assessments are made as to whether particular traditions are going to be necessary at all in the future. Your ghost whispers, "When you aren't there to do it, or to need it."

When grace is said at the holiday table, overlaying the passionately expressed gratitude for our all being together, there is the silent yet universally understood question: Will we all be together ever again?

As you exchange parting hugs and the usual breezy plans for future gatherings with visiting relatives and friends, now there is a subtle shift of the eyes, a hesitancy or a forced jollity in the voices. Your ghost stands between you and your loved ones, pale and unacknowledged, but inexorable. Its presence fills the spaces between each spoken goodbye and between your bodies as you embrace: Will you be well enough to visit in the summer? Will you be there in the next holiday season? Or perhaps worse, will you be there, but in a condition that casts a pall over what would otherwise be a joyous occasion?

That we don't know the answer to any of these questions makes the ghost, if anything, even more real and more obtrusive than if we knew for a certainty the hour of our passing. If we could answer those questions, we could make plans for that eventuality. The ghost and its questions could be kept at a distance, at least for a while.

When I was in college, nearly the only thing the philosophers and the social scientists agreed upon was that what makes us human is our ability to live in the future. Every day we focus our individual and combined dreams, hopes, ambitions and plans on imagined futures, both near and distant. Nowadays there is some question as to whether this quality is vouchsafed only for humans, but still it is an experience that seems inherent to our existence.

Terminal illness interferes with that unique and humanizing process. By removing your ability to make plans for the future (at least, plans that you and your loved ones can really believe in), it makes you Other. Instead of looking into the future and seeing yourself enjoying this or accomplishing that, there is just a sort of grey obscuring fog, and your ghost with its persistent questions.

Your ghost demands that you make the most out of this moment, that you stay aware of and appreciate each thing as it happens, and there is good in that. But it puts you at a slight remove from everything - in a way, you are saying goodbye to each known and beloved person and experience as they pass you by. And because your loved ones cannot make plans for the future that include you (at least, plans that you and your loved ones can really believe in), they hold you at a slight remove, even as they feel the need to clasp you tighter. They cannot help but live in the future to some degree, because they are human. And so they, too, are saying goodbye.

In Dickens' "A Christmas Carol", Scrooge enters his Christmas morning burdened with those ghostly questions. He does not know if he will see another holiday season, or if the death of Tiny Tim can be delayed. He chooses to make the best of each moment he has... but he also makes promises for the future. In the end Dickens cannot help but reassure his audience that Scrooge and his little protégé live on for many years, allowing his happy characters that human ability to make plans and to avoid their own goodbyes for the foreseeable future. He could not leave that last ghost hanging about to spoil the pleasures of the holiday season for his readers.

We aren't always given that same privilege in life. We cannot write a comforting ending to our own story, one that answers and dismisses all the silent questions before they can be asked. We must live with the ghost while it is there, as best we can. If it puts us at a remove and makes us Other, we can still choose to appreciate what is human and sweet, while acknowledging that the bitter exists.

And maybe that is its own Yuletide Carol. We are our own ghosts, whether we see them or not. Perhaps that is as human as it gets.

Swing Low...

Things are a bit low in the Rose Colored Household at the moment. I'm getting a lot more side effects from the meds now, the worst being a pretty nasty case of The Blues that just won't go away. It's hard to say how much is the thing itself, and how much is the medication, but I'm suspicious that I feel considerably lower this week than I did the first couple weeks after the news of progression.

The pain and the insomnia don't help, of course. Nor does the fear of what is to come, including, I suspect, a scan for brain mets. Of all the things about this monster that I'm fearful of, brain mets are the worst.

Add to all that a general weakness and fast-growing inability to do the normal things in life (who'd ever think anyone would be sad to lose the ability to shop for groceries?), and you have one very sorry-for-herself Self. It's like I've aged 40 years overnight. Very unpleasant, and I'm not handling it particularly well. There's no denying that the situation itself is enough to make anybody wail and gnash their teeth a bit, but it feels like more than that.

On the other hand, I'm feeling squeamish about getting on the pain med/sleep med/anti-depressant roller coaster, as I have such icky side-effects to just about everything. And once you start on that road it's like an avalanche - more meds for every side effect of the meds you're on, and then more meds for the side effects of those meds, and then you don't know what side effect is from what any more, and you can't eat any more because you are so stuffed from all the pills...

So. More decisions...

I'm not going to go off the AI's for now - I'll tough it out until we know whether it's working. If Dr. Bouncy says I should try a different AI, I will try it... but all of them have side effects, and the claim is supposedly that the side effects (esp. the pain part) can be a sign that the meds are working. Of course, they can be a sign of more progression, too. No scan allowed (other than possibly the MRI for brain mets) for another couple months, at least, and I hear from other gals in my boat that you can't really tell whether the meds are working for three or so months, in any case. So I have to just grit my teeth and bear it, and hope that all this won't be for naught.

In other news, I am starting the Low Dose Naltrexone next week, when it gets here from the pharmacy in Florida. I guess a lot of people in my situation get more 'flareup' from that at the beginning, too, and worse insomnia (is it possible to get negative amounts of sleep, that I could become some sort of black hole of sleeplessness?) But I'm hoping that it might eventually help my mood a bit, as it's supposed to increase endorphin production. We'll see...

In the meantime, if you have an aged grandmother who tends to drone on about all her aches and pains, please go sit next to her and patiently listen for a while, nod and look sympathetic and do your best to actually empathize with her. I can verify that she's paying a high price just to be sitting there boring you to tears.

Time, Time, Time...

Oh, for heaven's sake!! My beautiful cousin just mentioned, offhand-like, that I hadn't posted since November. I didn't quite believe her until I checked for myself.

Well, enough of that Pity Party. I won't know for a couple more months whether jumping off the dock did anything more than make me wet and cold, so I might as well get back to business...

For anyone interested, yes, I am getting side effects from the Aromasin. As usual, at least one of them is extremely rare. So far, none of them are terribly debilitating, although some are fairly unpleasant. And no, this is probably not all of them - some of the known side effects can show up months and even years later (if I get lucky enough to have years ahead of me to get side effects in, I will try to be gracious enough not to whine too much about it. I did say try, right?)

If the Aromasin works and gives me more functional time (although as Dr. Bouncy reminds me, probably not actual lifespan time), the side effects will be worth it. It's the Wait And See that's hard. Well, it's all hard, but the Wait And See is particularly tough, especially when you don't feel that you have much time for many other experiments if this one doesn't work out.

In the meantime, we are taking advantage of what time we have, as much as we can. We are doing as many of the Christmas Traditions as we can fit in. We are looking forward to the arrival of a very dear friend from New York City in the near future, and the arrival of an old friend from D.C. in the New Year, and perhaps the arrival of my only and aforementioned girl cousin soon after that. If time, health, and tax returns allow, we will try to get in another small vacation in the next six months or so. We'll make what plans we can, while we can.

Because we don't have time to waste.

Does anyone?