The Problem With Dying
The problem with “dying” is that it’s completely unpredictable.
Not all kinds of dying–the death that strikes you down in the moment and everyone is surprised, by, say, a random gunshot in the night or a car accident, or a brain aneurysm–I mean, yeah, obviously, it’s unpredictable. One day go to the store, get T-boned in the intersection: Surprise! Life over.
I mean the kind of dying that you can sense coming over the horizon, can see it in the distance. Slow, protracted-illness dying. The kind in which the doctors explain that you have Stage 4 Metastatic Prostate Cancer and, really, there aren’t any other stages above that, so it seems pretty obvious that you’re dying, dying. The kind of dying which gives you enough time to do, in the words of Edward Kennedy, your victory lap and say farewell.
It’s been exactly one year, not quite to the day, that we realized Dad was pretty damned ill. He’s been dying ever since, with greater or lesser emphasis on the deadline depending on the month, but dying just the same. When he was profoundly ill last summer, before the hormone therapy kicked in and handed him his life back, there were times when he looked at though he could say farewell within the week, and was feeling terrible enough to do so gratefully. And we had to prepare for that, all of us. Dad possibly least of all because let’s face it, he was miserable. But the rest of us had to put in motion, mentally at least, how things were going to play out. What was the game plan? When do I call hospice? When is the right time to tell people that he’s dying? Not just “extremely ill” but dying?
When do you tell people to drop everything and come say goodbye?
And then he got better. Seemingly miraculously the hormone therapy worked with such amazing efficacy that it was almost as though he wasn’t dying. That he didn’t have Stage 4 Metastatic Prostate Cancer anymore, that it had all been a dream. We didn’t forget that he had cancer, but we didn’t dwell on it. It became background noise, a nagging symptom of a long life which didn’t really impede enjoying what time he had left.
We had Christmas, a lot of meals and a vacation together. We had six pretty cancer-devoid months. But the hormone therapy stopped working, and the other medicine punked out on him too, and all the sudden Dad was dying again. Weak, laid out by radiation therapy, and being offered “clinical trials,” which sounds to us, because Stage 4 seems pretty dire in the first place, and the doctors never talk about curing your cancer, always about palliative care, like the end is coming.
So we had a lot of the conversations that you have when the end is coming, I guess. We had time for them because we were in the car every single day going back and forth to Dad’s radiation appointments. We had those wistful but not maudlin conversations about the choices we were coming upon, the cost-benefit ratio of this option or that. All those conversations which essentially mean the same thing: he’s dying, and he’s okay with that.
We made our peace with Dad dying in reality and not in the abstract. The end was fuzzy, it’s true–we can’t tell the severity of his cancer through the side effects of the radiation therapy which masquerade so convincingly as the cancer itself that we’re often misled into thinking he’s far sicker than he is. It’s astounding how many times I’ve been duped by this. But one thing kept the end in plain view: his PSA numbers were continuing to rise precipitously despite medical intervention and this seemed like enough to hang our hats upon.
So the problem with dying is really two-fold: it’s unpredictable, and you’re fallible. You are subject to your own interpretations of the available information which, god knows, is confusing and multifaceted and never-ending. So “Stage 4 Metastatic Prostate Cancer Which Has Defied Hormone Therapy and Bested the Casodex” seems like a pretty clear case of “dying,” and you make mental adjustments accordingly, from the mundane (“How can I make Dad’s life easier?”) to the profound (“How can I make my son’s life easier so he doesn’t go insane when faced with this same challenge?”).
But then the doctors throw you another ball to juggle.
Because when Dad and I had conversations about the clinical trials, when he seemed to be dying in reality and not the abstract anymore, Dad erred on the side of, “What’s the point?” And I understood this; really, what is the point of a trial that’s going to hand you a few extra weeks or a couple of months? We assumed (fallibly, erroneously, ill-informed–humanly) that the clinical trial was going to be an choice which ended in a zero-sum game: a few weeks of illness induced by the clinical trial for a few extra weeks of relative life. But weighed against the costs? More invasive medical shenanigans, more this, more that. More hassle to one who feels each hassle profoundly in his weakened state.
So I asked the doctors which trial they were going to offer him, because this information had not been forthcoming before. And after extensive research and sifting through pages and pages of unintelligible medical mumbo-jumbo on the internet, and finding nothing but patent applications and medical definitions, and barely intelligible excerpts like this:
“PAN inhibited growth of 10 prostate cancer cell lines (IC50 0.9-22.4 nM) and induced potent cytotoxicity in AR+ prostate cancer cells (LD50 20-81.9 nM). AR- deficient cells were sensitive to the antiproliferative effect of PAN, but not PAN-induced cell death (LD50 >1,000 nM). PAN treatment depleted AR and HER2 in androgen-dependent and -independent prostate cancer cells. In the CWR22Rv1 tumor model, PAN induced prolonged tumor stasis, with concomitant depletion of AR.”
I found one single press release that spoke in layman’s terms about the trial they would offer Dad.
Non-invasive. Less miserable than chemo, better than radiation. Potentially as miraculously happy-making as the hormone therapy was just a scant nine months ago. Now Dad is feeling positive toward the clinical trial, and we’ve been given hope: hope that he’ll feel better again, for a while at least, and he can have another victory lap, an addendum lap, after finishing the last one. A footnote lap. The appendix, or epilogue. One more turn on the dance floor, even though the band left.
But my heart doesn’t know what to do, how to approach our new working reality. I keep making my peace with Dad’s demise, which is an almost impossible task, and then his prognosis changes again. So Stage 4 Metastatic Prostate Cancer, which on the surface of things seems just about as bad as it can get, turns out to be varying levels of bad. I keep expecting dying to be the working reality, but the doctors keep changing the definition on us.
This is the problem with dying: I’m never sure if Dad’s dying in the abstract or dying for real. I don’t feel elastic enough to absorb and bend and continue making sound decisions about anything because the designation of “Stage 4″ is always shifting. There is no definition of “Stage 4.5″ or “Stage 4 and a little more.” There is only Stage 4, and Dad is there. The gray area within Stage 4 is wider than anyone would have reason to expect, and while I am immensely grateful to be handed more time and a decent life with Dad, I would like to resign the designation of Stage 4 and replace it with something new, just so I don’t keep thinking he’s dying until he actually is.
Because I don’t know what dying means anymore.
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Sweetheart, Dad is indeed dying, but in fact, the clinical trial sounds good to me not only because it seems promising, not that I can become immortal, of course, but that it could in fact give me back in the interim some of the energy boost I experienced with the Lupron for that first six months. The other thing about the clinical trial that appeals to me, is that it’s not just about me–it’s not about pissing all that money from Medicare and insurance down the bottomless rathole of health care–and I’m not knocking the care I’ve received; I believe my team is really good, they’ve been really straight with me, and behave like humans and not like robots. No, what I mean is that whatever happens with me, other people can benefit from the knowledge and information that attends on my participation–for me that takes it more into the character of a continuation of the adventure, a much better state of things than just hanging around like the steer waiting for the mallet to fall on his skull.
As for all the rest, I wish I could make it better, easier for you and Chris, and everyone, but I’ve hit my limit of what I can shield anyone from. And I have accepted that, though it’s far harder to accept that than the simple fact of dying, which for some reason doesn’t seem to bother me that much.
Why try to make it easier? You’ve got a pretty full plate as it is, I’d say! Chris and I are good, even though it’s hard.
But yes, of course the trial sounds ten times more promising than I ever hoped it would. To be honest, the thought of “trials” just seemed like a trial if I’m not belaboring a term. It seemed like sprinkling water on a conflagration–but once I did the sifting and found out more about it, the trial seemed promising. Exciting, even.
No, the biggest problem is the stopping and starting, changing mid-stream. The making my peace with one situation–really trying hard to be mature about this whole thing–and then having the game change again.
Part of the issue is the incompleteness of the language they use, like I express here. If there was a wider spectrum of cancer stages I might not keep thinking you were dying, like, soon. But they’re not very good at explaining that Stage 4 is actually a series of Stages which all have their own options. No-one, despite their good communication skills and straight talk, has said, “You know, Stage 4 is a little misleading. There are a lot of options. It’s not actually as final as it sounds.”
I mean, it’s no picnic, and when you’re sick, you’re really sick. But I think when one (me, for instance) hears that you’re in the last stages of cancer that it means you’ve hit the wall. Which clearly you haven’t since they keep pulling these rabbits out of hats. I never expected that once your numbers started going up again that they would have a promising therapy to offer. And even when they explained in our last meeting that they would likely offer you something, they weren’t forthcoming at all with what the “something” might be.
Was it too hard for them to be a little more elucidating about what they were thinking for you? Couldn’t she have told me then when we were there, since clearly, that was the only one recommended in your chart? They’ve mentioned so many things over so many months–chemo, trials, Casodex plus this, Casodex plus that–but that day they left us with a big open space where the information should have gone. I wouldn’t call it negligent, but a pretty great oversight. It was hardly an informational meeting, even though they had the information available.
I don’t expect them to read the tea leaves. I just want to know more about Stage 4, you know? It’s not as simple as “Last stage of cancer” though you wouldn’t know it from the outside looking in. They’ve been pretty skint on explaining it. And I’m weary from thinking one thing and discovering another. It’s hard enough to lose you anyway, but to lose you and then get you back over and over again because no-one has explained what “late-stage cancer” means is the hardest part.
Dear Quenby, Because our whole culture is so set on avoiding the issue of our mortality, it seems to me that the familiarity death once had for everyone is lost, shoved behind the curtain or under the rug. I believe that death and dying have been fraught with unpredictable and unforeseen shifts and changes pretty much forever, it’s just that we’ve fled it so successfully no one recognizes that any more. Some folks linger, fading in and out, others heave a massive sigh and are gone, and every shade in between. We just have to acknowledge we are totally not in control of any of that and bear up as best we can, not knowing. We’re luckier than most I think, because we’re lucid, not full of bullshit or false hopes, plus we really care about each other and can be grateful as hell for that! We are not going through it alone. Thank you. I love you.
Dear Q,
Your Dad is correct & clear–I would say it in different terms but he gets to the main point—’possible’ benefit for self with some residual benefit to others—later trial may not reach this threshold—thank you both for sharing–and forgive me for butting in—love, mark
No worries, Mark, and I don’t think anyone would consider it butting in! We’re all just having a little chat.
Dad is clear–vis a vis “possible benefit and residual benefit”–but the doctors aren’t always. I know what Dad wants; I don’t know what the Docs are talking about all the time.
I’m good with the dying part of the dying. I’m conflicted about the dying/not quite yet/”maybe Stage 4 is a little too strong a term since we keep having new therapies to offer” part of dying. I’m having problems with the part where it seems dire, I make my peace, do my best to deal with the realities, and then, in an almost cavalier manner the doctors have another card up their sleeve.
I was thinking about this the other night, and I realized that part of the problem may be that the terminology is not keeping pace with the medical advances. Things move so quickly anymore that Stage 4, which used to be the end of the line even just ten years ago, is now just a step on the medical path of discovery. But the Stages haven’t been expanded to include the new realities of medicine.
Sure, no one has a cure for what Dad has, and that’s why they call it Stage 4, but while they used to just call it on the table and that was kind of the end, now they throw all these sophisticated therapies at it which can extend the life of Stage 4 cancer patients exponentially compared to what used to be. But no-one has rephrased it. The doctors and oncologists are too absorbed in the medicine–the patients too absorbed in being ill–to recognize the need for more specific designations and descriptions of what “Stage 4″ might mean.
But maybe I’m just cross because they’re still saying he’s sick, but not as sick as all that, and to make it up as I go along.
I don’t think that’s it though.