Clearing the Air: No. 4

The notorious stage theory of Elisabeth Kübler-Ross, whereby one progresses from denial to rage through bargaining to depression and the eventual bliss of “acceptance,” hasn’t so far had much application in my case. In one way, I suppose, I have been “in denial” for some time, knowingly burning the candle at both ends and finding that it often gives a lovely light. But for precisely that reason, I can’t see myself smiting my brow with shock or hear myself whining about how it’s all so unfair: I have been taunting the Reaper into taking a free scythe in my direction and have now succumbed to something so predictable and banal that it bores even me. Rage would be beside the point for the same reason. — Christopher Hitchens, “Topic of Cancer,” Vanity Fair, August 2010

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Christopher Hitchens has said, upon contemplating his own medical predicament in the above piece and in interviews, that having cancer was nothing like a “battle,” as most people politely frame the discussion when the grim news comes around. There is no battle, he said. “You feel as if you’re drowning in powerlessness,” he said, and elsewhere, “I’m not fighting or battling the cancer. It’s fighting me.”

As for myself, I wasn’t as far along into respiratory degeneration as I am now when the Reaper turned his wintry stare on Hitch six years ago — and in the process, cut down one of the preeminent thinkers of our time and one of the greatest writers of any time — but I think I knew, even then, what he was ultimately implying, even if he didn’t come right out and say it. Outside of extreme intervention — aggressive chemotherapy, bypass heart surgery and organ transplantation — human beings usually can’t come back from the brink when faced with certain forms of cancer, obstructed arteries or lung disease. And fortunate as we are to live in an era of research and discovery, without modern medicine and science, we, as a species, would be left exactly where we started: trembling before the stars and wondering, in our own baffled ignorance, what capricious god we must have angered to be stricken with all sorts of maladies — a weak heart, bad sight, a wobbly gait — to send us to our unceremonious graves. In many cases, then, cancer isn’t a battle so much as it is a civil war; a person’s own cells, metastasizing and turning against them in an unwinnable, merciless onslaught. It’s Pickett’s charge without the bayonets and the ensuing inevitability of surrender. That’s certainly what cancer is without medicine, and that’s sometimes what it is with chemotherapy, which Hitchens preferred to call “venom.” With cancer, then, there are a few winners, no shortage of brave fighters and unfortunately, a disproportionate number of losers.

The struggle

Hitchens, as do I, preferred the analogy of the struggle when thinking about chronic illness. Readers, or people who know me personally, will no doubt know by now that I draw a lot of inspiration from “The Myth of Sisyphus” essay by Albert Camus and the tale of a man who, after daring to trick one of the gods, was ordered to heave a rock up a mountain, only to have it roll back down to the bottom and to repeat the process endlessly. It is in this essay and in the imagery of Sisyphus’ seemingly “futile and hopeless labor” that we see one of the most profound illustrations of struggle and perseverance.

sisyphus_by_ahermin

Camus invites us to imagine the sweat and toil Sisyphus mustered to get the boulder up the mighty slope just one time and then, as with all other subsequent ascensions, he watched as the rock inevitably crept back down the mountain. At the summit, Sisyphus turns and prepares to meet his fate once again.

Camus calls this brief interlude — “that pause” — Sisyphus’ “hour of consciousness” constituting mankind’s singular point of triumph:

At each of those moments when he leaves the heights and gradually sinks toward the lairs of the gods, he is superior to his fate. He is stronger than his rock. … If this myth is tragic, that is because its hero is conscious. Where would his torture be, indeed, if at every step the hope of succeeding upheld him? The workman of today works everyday in his life at the same tasks, and his fate is no less absurd. But it is tragic only at the rare moments when it becomes conscious. Sisyphus, proletarian of the gods, powerless and rebellious, knows the whole extent of his wretched condition: it is what he thinks of during his descent. The lucidity that was to constitute his torture at the same time crowns his victory. There is no fate that can not be surmounted by scorn.

Sisyphus, then, becomes what Camus calls an “absurd hero,” who relishes in what it means to be alive, spurns death and defeat and goes about the only things that he now knows: self-preservation and his rock. Thus like Oedipus, Sisyphus and modern man must eventually conclude, “Despite so many ordeals, my advanced age and the nobility of my soul make me conclude that all is well”:

I leave Sisyphus at the foot of the mountain! One always finds one’s burden again. But Sisyphus teaches the higher fidelity that negates the gods and raises rocks. He too concludes that all is well. This universe henceforth without a master seems to him neither sterile nor futile. Each atom of that stone, each mineral flake of that night filled mountain, in itself forms a world. The struggle itself toward the heights is enough to fill a man’s heart. One must imagine Sisyphus happy.

Unlike Oedipus, Sisyphus is not a tragic figure, but a person who perseveres and finds purpose, and possibly even contentment, in circumstances that, on the surface, seem to offer little. He finds wonder in each atom of that rock; he marvels at life in the void of night. The lesson is poignant because it teaches us to appreciate life, to carve out a little corner of happiness and enjoyment for ourselves, regardless of the circumstances. Or, as Milton said, to “possess a Paradise within thee, happier farr.”

Indeed, in order to weather the inevitable battery of tragedies that could befall us at any given time, one must imagine what life would be like during a worst case scenario, and we should emotionally prepare ourselves for it because before I get to the end of this paragraph, someone, somewhere, is indeed approaching the precipice and lowering their eyes on the darkness. None of us are all that far away from the edge, from the worst of things, as we might like to imagine.

And so, realistic hopefulness is where you find me here amid the struggle — the creeping ascent, an upward gaze, a cloudbreak before the retreating fall and a turn toward the heights in the gathering dust.

Philosophical musings notwithstanding, the physical analogies I draw from Sisyphus should, by now, be obvious. The process of breathing with COPD is like walking up a steep hill all the time or holding your breath too long in the deep end of the pool. It’s a slow and inevitable march that will catch up with me sooner or later without a transplant. That’s not resignation; it’s just basic medicine, and so, realistic hopefulness is where you find me here amid the struggle — the creeping ascent, an upward gaze, a cloudbreak before the retreating fall and a turn toward the heights in the gathering dust.

The middle

I said in the last post that I would cover some of the other complications that have made getting on the list and on the operating table a tough sell. In addition to an irregular immune system, I also have what is known as achalasia, which, compared with these other health issues, is actually pretty common. It simply means that the esophagus does not carry food down the throat to the stomach as well as it should. As such, food sometimes gets lodged down the gullet, and in bad cases, patients have to regurgitate and just hope the passageway opens back up on its own. So far as I know, I have had this since I was a child, and I have had to eat slowly and at a measured pace ever since.

A person with this condition doesn’t have to swallow food whole in order for substances to get stuck. Some foods, like rice, pasta, chicken and steak, require lots of chewing, and even then, if you eat too fast, they will get stuck. Since I have lived with this for the better part of three decades, I usually don’t throw up anymore. I know what foods tend to get stuck and eat and drink accordingly.

It’s hard for me to describe what it feels like when food does get stuck. Most people will be familiar with the experience of drinking a cold swallow of water and feeling it go down their throats. If the esophagus is closed, even water doesn’t go down, so if you keep drinking or eating after the problem occurs, it feels like fluid and food is building up in the middle of your throat. If it doesn’t “clear” on its own, there’s nowhere for it go but up. Once enough food and liquid start to build up, patients tend to feel a lot of pressure until eventually, it just feels better to throw up than to continue to hold it down. In the past, I have been able to hold it long enough where it did clear on its own, but that’s a far from pleasant experience. The best of all options, of course, is to eat slowly and don’t get sick in the first place because once a person throws up the first time, it usually takes longer for the esophagus to go back to its normal state. In previous episodes, I have spent the better part of a day waiting for the damn thing to open back up. Pretty disgusting, huh?

Doctors have a few treatments for this, including muscle relaxers, a rather routine surgery called an esophageal dilation and a more complicated procedure known as a heller myotomy. I have had numerous dilations, and if I move forward with a lung transplant, at some point after the operation, doctors will want to perform a myotomy to mitigate the issue.

The complication, as it relates to the lung transplant, is that achalasia patients usually also have problems with acid reflux and aspiration, which means, because the esophageal muscles don’t function properly, materials from the stomach can come back up into the throat and damage the lungs. As I said earlier, doctors don’t seem to know for sure, but this could have been what contributed to some or all of the initial lung damage in the first place, and this is why Duke did not approve me for the lung transplant, although they knew beforehand that I had achalasia.

In any case, the sequence of steps will be to first get me through the lung transplant, look at performing the myotomy a few weeks into the recovery period and then the bone marrow transplant two or three months after the lung transplant. The kick in the nuts about the swallowing problem is that I will not be allowed to eat or drink anything for four to eight weeks after the lung transplant and will get nutrients through a feeding tube. I have assured doctors that I have the wherewithal to sustain this exercise in mental endurance. We will see if I actually do. Not eating is one thing; not drowning myself in coffee every day will be another one altogether.

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I’m not sure yet what I will write about next, as I have been fairly restless the last several days. My parents and I have since left the Family House in the medical district of Pittsburgh and am currently living in an apartment in a place called Wexford. I sustained what hopefully will be a minor setback regarding insurance. While the lung transplant itself was covered, the bone marrow transplant has yet to be approved. The two procedures go together. Because of the aforementioned complications, I don’t qualify for new lungs without the bone marrow transplant. My case manager at the hospital was under the impression that the bone marrow procedure would be covered through a research grant, and it may well be, but at this preliminary juncture, the insurance has to be approved before we can move forward. As such, I was made inactive on the transplant list temporarily until funding is approved for the bone marrow transplant. I am hoping for a resolution this week.

[Artwork credit: “Sisyphus” by DeviantArt user ahermin.]

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