Friday, May 3, 2013

Where we are now...

Obviously, this was a short-lived blog! But I've continued blogging - about childhood cancer, whole-kid approaches to cancer, and helping others - over here and here. Please check us out and like the MaxLove Project on Facebook...

Thursday, January 5, 2012

Never ever give up

I haven't posted in almost two months because of work and then holidays, but I just feel like I need to post this now:

Today an incredibly courageous little girl died from brain cancer. Her name was Jessica Joyce Rees, but we knew her as the "Never Ever Give Up" girl because she and her father, after learning of her diagnosis last spring, started a small charity that gave "Joy Jars" filled with little toys to other kids who have cancer. They named their charity "NEGU" for Never Ever Give Up.

As Jessie's condition worsened this morning, her father posted on Facebook that their hearts were broken. Our hearts are broken too.

Wednesday, November 16, 2011

The small c

So, I've been meaning to explain the title of the blog. I have a massive amount of work to do right now and very limited time in which to do it, so what better time than now to push all that to the side and think about more important things? And why not think about cancer?

Most of you know about the recent Showtime series "The Big C." It's about a suburban mom and wife who is diagnosed with cancer. I can't really tell you more than that because I've only seen one episode and lost interest (let's just say it lacks in subtlety). Anyway, the title of the show had already become a popular way of referring to cancer diagnoses. "Cancer" is too frightening and disturbing a word; it's come to signify a slow, painful death. And so we refer to it by its initial letter, and underscore its dreadful importance by qualifying it as "big."

So, yeah, our son has the "Big C." In those first weeks after the diagnosis and surgery, we refused to use the word "cancer." Hell, we refused to even think about the word. I remember the first day we were visited by a nurse from the oncology ward. She told us the ward she was from then paused and asked if it was ok for her to visit with us. She knew her presence signified a new reality and a new life for us. She new that she was a representative of one of the worst fears a parent could have. We of course asked her to stay.

I had to leave shortly after she arrived (I don't remember exactly why) but I remember talking with SW later about the visit. She told me the nurse was nice and they had a good talk. But something really troubled SW. The nurse had mentioned SB's "cancer." SW told her, "Well, we don't know that it's cancer yet." The nurse, SW said, smiled and then continued on with the conversation. We were indeed waiting on the pathology report to find out what kind of cancer SB had, but we were still not ready to believe that he actually had the "Big C."

When the head of oncology came by later, he took a very gentle approach with us, saying that if the pathology report comes back with a normal pilocytic astrocytoma (btw, it didn't) then one of the options would be to just wait and see. No chemo, no surgery, just wait and see. I think that this subconsciously reinforced the illusion that we were not dealing with cancer. Throughout that first week we talked about tumors, pilocytic astrocytomas, chemotherapy, oncology centers, but we did not ever utter the word "cancer."

Early in the second week, after another oncology nurse had mentioned cancer to SW, we talked about it together. This might sound funny, but it was over a week after diagnosis and surgery that we had a discussion about "cancer." When we finally spoke those words, it felt like we were speaking of death. If felt as if we were uttering some black magic, and we'd best keep our mouths shut. But we also knew that we had to be honest with ourselves so that we could be honest with SB.

"Does SB have cancer? Is that what this is?" SW asked me.

"Yeah, I guess. It's a tumor right?"

"But not all tumors are cancerous."

"Right, but then why are these oncology doctors coming around?"

The funny thing is. The hospital staff seemed just as wary of the word as we were. No one except for these two nurses from oncology ever mentioned the word to us. We had heard every other medical term to describe Max's condition and prognosis, but not "cancer." Perhaps this was because there are much more precise ways to talk about cancer and its treatment. Mitosis, anaplasia, glioma--these terms signified much more for our doctors. But they also allowed the doctors to avoid terms that signified as much to us.

I remember when very soon after our talk SW asked the head of oncology, during one of his several visits with us, if SB's tumor was properly called "cancer." He smiled slightly and awkwardly, and said, "Well, yes." The tone hinted at surprise. He paused for a second and then, as if realizing that we knew but just needed to told, he added, "SB has cancer."

So, what about the blog name? It comes from two sources. The first is a recognition of the peculiar sorrow, strength and joy that attends childhood cancer (and any serious childhood illness). How can something so terrible happen to someone so small and innocent? The "small-c" is a cruel puzzle. The second source is a desire to face "cancer" honestly, but not too honestly. No matter how big and scary it is, we want to shrink it--in every way. So the "small-c" is a way to not just face the facts, but to face down the facts.

Saturday, November 5, 2011

Grace, again

We were swept up with love last weekend. If you read this blog, chances are, you were doing some of the sweeping last Sunday at the wonderful, marvelous, Cibo. If you were there then you know how delightful it was: the food, the wine, the music and the outpouring of love for SB. If you weren't there then you should know that it was truly overwhelming. Dozens of people and organizations gave their time and money to pull off an amazing fundraiser. (And a couple outsized souls who really made it happen.) I was asked to speak at the end and I just couldn't. I was able to say "thank you" to the crowd but I couldn't muster anything else. I was choked up with tears.

In fact, there were several times during the event when I began crying. Once, I couldn't stop. I was talking to an old friend of SW's about how amazing the whole event was. She had donated her time and money to the event (btw, to see what she does, go here if you're in Phoenix: Churn), and I was only trying to thank her. Well, I instead broke down and only came around after she offered me chocolate gelato. 

I've already written about disorienting acts of love in terms of "grace." I wrote about how grace is a thoroughly unmodern idea that contradicts most every facet of modern social life. We live in a world of contracts, efficiency, bureaucratic rules and regulations. We easily come to see others and ourselves as data points, customers, and constituencies. In the modern world, we are "forced to become individuals," as one well-known sociologist has said. So much is this the case that we are mostly unaware of how tightly bound to communities--how de-individualized--humans have been for most of our history. 

It's little wonder then that Protestantism, with its intense focus on grace and its individual nature (Amazing grace . . . saved a wretch like me. I once was lost, but now am found, Was blind but now I see) spread like wildfire in the modern world. To me, grace is an idea that makes the most sense, that is most necessary, in the modern world. In a tight-knit pre-modern community, your destiny, life-chances, success and failures, are completely bound up with your community's destiny, life-chances, success and failure. What would unconditional love mean in a community like this? It would be worthless because your recognition, acceptance and care in that community would never come into question. (Of course, hardly anything else would come into question--and this is part of the modern trade-off.) In any case, unconditional love only makes sense when love is a scarce resource.

We give up a lot to live in the modern world, but obviously we think it's worth it. However, some of the things we give up are impossible to replace through substitution. The unconditional social love and care of an unreflective and organic community is something we moderns simply can't generate, at least not for long. All in all, that's ok. There's a lot that comes with these bonds that we find suffocating. But in those moments when we taste what we've been missing, when we are swept up in love and care by others into something that transcends our isolated individuality, the modern trade-off begins to look a like a bad deal.

And so an idea such as grace strikes us as sublime and transcendent. It strikes directly at what we have lost in the modern world and can't get back. But then, in moments like last Sunday, we see that it's still here with us, waiting, ready, and willing.

Wednesday, October 26, 2011

Too early?

So much in life depends on timing. An otherwise perfect punchline, kiss, or investment, if done too soon or too late, can fail miserably. Before the small c came into our life, SW and I would often remark at the seemingly terrible timing of parents who came on morning news shows after tragedy struck their child.

We would look at these grieving people and wonder what would compel them to share these intimate and terrible feelings with the world. Maybe down the road, when it's not so raw. We always assumed that these parents did it out of some knee-jerk desire to over-share in this age of facebook and reality TV. It seemed almost obscene. 

But now SW and I find ourselves engaged in some form of this behavior. She has her blog and I have mine here. In both we share pretty intimate details of our situation. And not only that, but when I'm at work and I see a colleague for the first time since SB's diagnosis and surgery and they ask how I'm doing, I'll almost always launch into SB's story. It rarely even matters how well we know each other. 

I've been concerned from the beginning that when I do this, and when I write on this blog, that I'm needlessly exposing myself and my family, that it's just too soon to write and talk to those who aren't very close to us, that I might be just fishing for sympathy. 

In honesty, I can't rule out any of these possibilities. But I don't think that any of these accurately describes what I'm feeling when I share our unfolding story. In those one-on-one interactions with people I haven't seen since the diagnosis, I feel compelled to say something about SB because it permeates every part of my life now, and I feel that they need to know that something has fundamentally changed for me. It's as though I can only relate to another person if they can recognize that change. (And strangely there are people I've told who seem not to register the tectonic nature of this change; in this case, we just can't relate.)

But more broadly, I think the desire to share an experience like this is an almost instinctual recognition that its potentially devastating and world-shattering effects need to be repaired, and this repairing is done through talking about what is broken, missing, and dissonant. By recognizing what is shattered and what fissures have opened in our world, we can at least begin to acknowledge our new reality and make a new home here. And in rare instances, we are even able to invite others in. 

Monday, October 17, 2011

Grace period

There have been several times over the past two months when we've had to rely on institutional "grace periods." I've forgotten to pay bills, return library books, submit class grades, send off an article--the list goes on. SW pointed out last week how we've been the recipient of a much deeper sort of grace period. Too true.

An institutional grace period is a strange enough concept. Built into strict, bureaucratic, anonymous structures are these allowances for human frailty and need. The date of return is clear when we check out books. There is no room for misunderstanding. Yet, in many library systems, there is an allowance for returning books late--a period of grace shown by the library toward the library user.

For those of us who grew up in practicing Christian homes, this use of the term "grace" is deeply telling of our relations with these large institutions. Grace, as every sunday schooler knows, is the love and salvation the unworthy sinner receives from God. The special thing about grace, especially in traditional Protestant theologies, is that it flows freely to humankind even though humankind has done nothing and-- here's the kicker--cannot possibly do anything to earn or be worthy of this grace. In most of these theological systems, the sinner only has to accept such grace.

And so what sort of grace is shown to us by these bureaucratic institutions? Aren't these unmerited gifts, these periods when we are not penalized for failing to live up to the contracts we have entered in to? In a free market society such as ours, what else should we call the favors done to us? It's little wonder that we would rely on religious language when the iron-clad bureaucratic structures we live under are bent, if even for a limited "period," to make room for our human shortcomings. We experience them as moments of real humanity, of an older, now mythical communal bonding that only exists today in fits and starts in the nuclear family. But whereas the grace shown to us by our immediate family members is seen as organic (I mean, as simply part and parcel of the parent-child relationship), the grace shown to us by modern, anonymous institutions comes to us as nothing less than a secular miracle. 

It's unsettling because in the modern world we experience others (both individuals and institutions) through the logic of the balance sheet. What are our debits and credits vis a vis others? Whom do we owe and who owes us? If we choose to be lax in balancing our relational books, then we will surely fall into the red. We'll be taken for chumps. In fact, this is how we most often consciously consider institutional grace periods: periods in which an institution will allow us to take advantage of it. 

So, what about this grace period my family has been shown by those in our orbit? I must admit, it's been as overwhelmingly beautiful and profoundly moving as it has been unsettling. We've expected and received a great deal of care from our immediate families. But what leaves us speechless and tearful is the love and practical support we've received from individuals and groups whom we've known only for a short time (or sometimes not at all). These gifts are best described in terms of grace because we have surely done nothing to earn them: we have not shown that we are willing or capable of returning the favors; we have not shown that we can put the favors to good use; in some cases we have not even demonstrated our real need of the gifts (even though the need is there, I assure you). 

Isn't this what makes grace a truly sacred concept? It is a relational interaction that defies every logic we use to govern our lives in the modern world. We live in terms of contracts and exchange, even (or especially) in our social relationships. How many times will you invite me to dinner before you expect me to invite you? The social contract is not just an abstract political concept. We use it to govern our lives. But the sort of grace we've received is ignorant of this reasoning.

It's unsettling because there is no calculating logic to it. We cannot possibly balance these books. 

Monday, October 10, 2011


A couple weeks ago, New York Times columnist David Brooks drew attention to what he calls the latest craze in American culture: empathy.
There are shelfloads of books about it: “The Age of Empathy,” “The Empathy Gap,” “The Empathic Civilization,” “Teaching Empathy.” There’s even a brain theory that we have mirror neurons in our heads that enable us to feel what’s in other people’s heads and that these neurons lead to sympathetic care and moral action.
Brooks argues that empathy, while a key ingredient in pro-social action (i.e., "sympathetic care and moral action"), is ultimately inadequate. 
The problem comes when we try to turn feeling into action. Empathy makes you more aware of other people’s suffering, but it’s not clear it actually motivates you to take moral action or prevents you from taking immoral action.
Those who turn feeling into action 
feel compelled to act by a sense of duty. Their lives are structured by sacred codes. 
He goes on to note that these codes can be religious and non-religious. Their sacredness does not emerge from some eternal, objective order, but rather comes from deeply ingrained notions of social connection and disconnection. 
Think of anybody you admire. They probably have some talent for fellow-feeling, but it is overshadowed by their sense of obligation to some religious, military, social or philosophic code. They would feel a sense of shame or guilt if they didn’t live up to the code. The code tells them when they deserve public admiration or dishonor. The code helps them evaluate other people’s feelings, not just share them. . . .
The code isn’t just a set of rules. It’s a source of identity. It’s pursued with joy. It arouses the strongest emotions and attachments. Empathy is a sideshow.
We now have had the strange but fortunate opportunity to be the sustained object of many people's empathy and "sympathetic care and moral action." In fact, if you're reading this blog, it is almost certainly the case that you have given to us in this regard. In any case, Brooks's column has stuck with me. 

Empathy for SB has been overwhelming. Whose heart doesn't break at the mention pediatric cancer? Whose breath doesn't catch when hearing of a four-and-a-half-year old boy facing a sudden life and death struggle? But empathy's fire needs tending if it's to keep its heat. Does that mean it's "a sideshow"? I think that Brooks is on to something here.

The most enduring "sympathetic care" we've been shown has come from individuals who appear to be moved by more than empathy. I'm not sure their moved by a "social code," as Brooks argues. But they at least seem to be moved by a heightened sense of who they are and who they should be. I suppose that could be a social code. Brooks says, "It's a source of identity." But the source isn't a code but rather a conception of their best selves.

Perhaps I'm projecting. Because at the end of a long day, exhausted and running on mainly on the fumes of stress and caffeine, my first reaction to SB's whininess or general recalcitrance is anger and dismissiveness. What snaps me out of it? Well, I don't always snap out of it. But when I do, it's not because I draw on an endless well of empathy in my soul. I snap out of it because I suddenly realize what the father I want to be would do. 

Tuesday, October 4, 2011

The worst day of my life

One of my favorite bloggers has a new regular feature in which readers ask him random questions and he answers by video. Today's question was, what was the worst day of your life? I didn't have time to watch the video but the question immediately led me to think about what most bystanders would assume to be the worst day of my life: August 5, 2011, the day SB's brain tumor was discovered.

But strangely it's not. That day, to paraphrase a famous Muslim poet and a German philologist, exists beyond good and bad, best and worst. It is impossible to properly convey. The world was never so vivid, my senses never so heightened, my life never so real and meaningful. There was never a question of what I should be doing or where I should be.

Everything was so immediate and real. Of course, it was terrifying as well. Terrifying as in causing terror. The thing about terror, though, is that it's a key element in what philosophers have called the sublime. Although there has been loads of disagreement on the concept, the definition that's stuck with me is that the sublime is the pleasure we get from being threatened and overwhelmed by nature. It is the intense feeling of the fragility of life.

In this very narrow sense, that day and the few that followed were sublime. Although our lives are now about battling, managing, problem-solving, and persevering, we are reminded occasionally of the depths and immensity of the forces we face. Our worst days are those of drudgery, not those when we are reminded how terrifying our situation really is.

Friday, September 30, 2011

Tackling cancer

Football season is in full swing and so naturally I'm interested in applying football metaphors to our situation. About a month ago, the kicker for my favorite football team gave some tackling advice on Twitter. He wrote:
Tackling is mostly about desire. If you want to tackle & aren't afraid you will usually be pretty good. If you are hesitant you will stink.
The night before he landed a pretty good tackle on a kick return (an unusual event for a kicker). The advice stuck with me because it seems so simple and intuitive, yet if you don't truly desire to tackle and are in a situation where you need to tackle, bad things are probably going to happen. Kickers, quarterbacks, punters and other players not used to tackling often get hurt (or at the very least, miss) when trying to tackle. From a purely technical standpoint, these players fail at tackling for any number of reasons: their feet and body are not properly positioned, they took an incorrect angle to the point of tackle, they attempted the tackle with their arms rather than their bodies, and so on. And the players who do not normally need to tackle will likely think about these things (if very briefly) when the next need arises to tackle an opposing player.

But it turns out the technical aspects of tackling are nearly inconsequential compared to something as intangible and unteachable as desire. The kicker above doesn't tell us why this is (it is a "tweet" after all), but we can speculate. I think it's because tackling is one of those events in which most rational, well-adjusted people would avoid if possible. On the football field, of course, it makes sense to tackle the opposing player with the ball, but even here, who wouldn't prefer for that opposing player to fall to the ground on his own or run out of bounds? Only the most aggressive, testosterone-filled meatheads, for sure. For the rest of us, we would go ahead and tackle, because that is our role-related duty. But we would do so hesitantly. And the bigger and badder the opponent, the more hesitant we are.

I think this is the common way to tackle most non-football opponents as well. We go ahead and tackle our opponents, for sure. We work the extra hours; we endure the prodding and poking; we forgo what others partake freely in; we do all manner of things to "tackle" our life "opponents." And we might be technically proficient at it as well. But how often do we do it with hesitation, half-heartedness, self-pity, or resignation? I won't tell you what my ratio is. But I will say that this advice--that successful tackling is mostly about desire--seems right on to me.

In the most difficult moments, when I view SB's cancer as an opponent, and I embrace our antagonistic relationship, I find myself diving into our problems with a slightly crazy joy. It's a joy that seems sociopathic when an NFL linebacker leaps up from a vicious tackle and celebrates with abandon. Sure, it's mindless violence; but it's also an energizing metaphor for how to crash headfirst into life's ugliness.

Monday, September 26, 2011

Between a rock and a hard place

Last night TW (whom we will henceforth refer to as SW--Super Wife) and I watched the movie 127 hours. Actually, we watched the last half of it. Even before all of this, we didn't have the time to watch whole movies all in one night. Anyway, several moments in this film touched us deeply.

It's about an experienced climber and hiker--Aron Ralston--who is a bit of a lone wolf (a character who is sooo Colorado: he loves Phish, apparently works at a bike shop, lives for the great outdoors). He literally finds himself between a rock and a hard place, as he falls and lodges his arm between a boulder and a canyon (more like a crevice) wall.

The scenes of him trapped in this very narrow canyon are harrowing. In the first hours after becoming trapped he hits, slams and pulls against the boulder with everything he has. James Franco plays this part with such immediacy. Spit and mucus fly as he rams himself against this rock. Over the next 127 hours he plots his survival and his eventual escape. Between episodes of intense mental and physical effort he reflects, dreams, and hallucinates over his life: his relationships, his family, his lost opportunities.

Several days in, as he battles dehydration, blood loss, and fatigue, he comes to a realization that his own character flaws--namely selfishness and fear of vulnerability and connection--led him directly to this moment. He looks around at what would be almost certainly his grave and says, "You know, I’ve been thinking. Everything is… just comes together. It’s me. I chose this. I chose all this. This rock… this rock has been waiting for me my entire life. It’s entire life, ever since it was a bit of meteorite a million, billion years ago. In space. It’s been waiting, to come here. Right, right here. I’ve been moving towards it my entire life. The minute I was born, every breath that I’ve taken, every action has been leading me to this crack on the Earth's surface."

There's a lot here for me to chew on. In what sense do we chose our most difficult battles? And I don't mean in the sense that we could have chosen otherwise and avoided them. For Aron Ralston, there is a very banal sense in which he chose that situation--he set off hiking alone without telling anyone where he was going. He was probably hiking dangerously (I wouldn't know the difference, though). He chose to step on that boulder that gave way.

But Ralston is saying more than this. He is saying that his whole life led up to that point in a coherent way, and that the boulder and canyon and his crushed arm are all intimately connected, not antagonistically opposed. I think that this is a really powerful way for me to think about our present circumstances. It is obviously not the case that any of us chose SBs cancer or that our personal shortcomings caused this. No, that's the simplest and shallowest way to interpret the above quote. Instead, I think that the quote suggests that when we look around at our present circumstances and see how all parts can be fitted together, we can see the resources present and within us that will help us through. Aaron saw that boulder and that canyon as a part of him, as deeply constitutive of his whole existence. When I think of all that we are going through not as something foreign and hostile but as part of a greater whole, I see new and different metaphors for our situation emerge. Our battles become dances, our armies become intimate partners, and our misfortune becomes a rich symphony.

This probably makes no sense. I'm not sure I can properly explain the resonance I feel between our situation and the story of this film. I do know that I feel this resonance strongest when I think of the moment immediately after Aron cuts his arm off and comes loose from the canyon wall. After recovering from the shock, he gathers his gear and bandages his arm. As he walks away, he turns and looks at the boulder and says, "Thank you."

What was he thankful for? He was not thankful to the boulder for freeing him. The boulder never budged and in fact sank deeper into his arm and the canyon wall when Aron attempted to chip away at it. No, he was thankful that the boulder showed him something he could never know otherwise.

In my best moments, I am also thankful for our boulder. It scares me to no end. And I wish to the universe that it was my brainstem that was covered in cancerous cells. But I know that, at least so far, our boulder has opened up new worlds to us.

If we can leave this canyon all together then I know beyond a shadow of a doubt that we will all look back and say, from the deepest parts of us, "Thank you."

Friday, September 23, 2011

Life's Great Experiences

A favorite writer of mine recently tweeted, "Few of life's great experiences are frictionless." This is one of those statements that I would have easily agreed with before our present ordeal. Great experiences in my life--marriage, children, work achievements, skills acquired, etc.--all required a massive amount of friction. (Insert joke about friction and procreation here.) We understand this. Good things don't come easy.

But I'm beginning to see that the reverse of this statement is true as well. High friction experiences are (or at least can be) life's greatest ones. I don't mean this in an Oprah-"what doesn't kill you makes you stronger" sort of way. I mean that confronting the pain, frustration, exhaustion in our situation, not to mention dealing with the potential loss of our child, has allowed us (no, forced us) to draw on and materially act out the depths of our love and commitment for each other.

You might say, "We all shouldn't need such events to act out our love and commitment for each other." I'm not so sure. To go back to the military metaphors I mentioned a couple of days ago, this is like saying that soldiers should be able to act out valor somewhere other than the battlefield. And no doubt, this would be preferable! But it is also impossible, for valor is not simply courage, it is courage in the face of danger. Valor requires friction.

Does love also require friction? I now do not believe it is possible to love deeply (or feel deeply loved) without high-friction experiences. In the words of Pat Benatar, love is a battlefield. But unlike Benatar's vision of young lovers clashing with each other, true, deep love in battle is between soldiers. The friction, then, of our great experience is the battle we are fighting alongside SB against cancer. And while I would do anything--I mean anything--to take this away from him, I am so grateful for this experience. It is giving each of us the rare opportunity to love and fight and persevere when the stakes are highest.

Thursday, September 22, 2011

Over and over and over

When you say the same word over and over it starts to sound strange and foreign. It loses it's original meaning. If you haven't experienced this then you should try it.

Anyway, there are times when I feel like this is what has happened, not with the word but more the idea, of cancer. It's been with us now for almost two months and the whole idea of our son having cancer seems stranger and more bizarre than ever.

I assume it should be the opposite. We let ideas "settle in" and "percolate." You get used to it, right? I think what has happened is that in the weeks after the diagnosis and surgery we held on to some tried and true interpretations of catastrophes like this: it happens to more people than you realize; it makes you stronger; people get through this; your community sustains you; and so on.

These are all true and good. But as time goes on, even if we don't hit major set backs, the hard reality of the situation (for you liberal arts majors: the unconstructed irreducible reality) defies any interpretation. And so the ideas that we plaster on to this reality wear around the edges and start to seem ill fitting and strange if we look at them for too long.

Maybe our interpretations are like songs. New ones can enthrall us but wear thin after a while. Even newer ones come along and, though the beat or hook might be similar, we become enthralled all over again. The same goes for our understandings of events like these. They can't remain static lest they start to seem false or forced or inauthentic.

For me, this is another reason to continue talking and writing about it. Our stories have to constantly evolve, if only slightly, so that the hard, unknowable edges of reality become softer once again.

Wednesday, September 21, 2011


I talked with an old friend today. It was a very tender conversation, and at one point he expressed his sadness and frustration that he did not live near us so that he could help. Barely holding back tears, he said, "I could cook you dinner or just hug you guys." I was sad too, not because we necessarily need the help, but because I have come to understand that helping in these situations is not only (or even primarily) about providing practical assistance. It's about manifesting our love, compassion and connection. It's about being able to materialize and act out the feelings and thoughts we have for each other. Without the ability to do this, as with my friend, the empathy can begin to gnaw at us.

Tuesday, September 20, 2011

What REALLY is cancer?

Several weeks ago I came across an article by Daniel Menakar about the metaphors we use to describe cancer and its treatment. Many have argued that the typical military metaphors we use in regard to "fighting" cancer are not particularly helpful.
They say that putting the experience into martial terms means that those who die are by definition, at least figuratively, losers. Not just of their lives — as if their lives weren’t enough — but of personal wars. That they gave up. Dr. Andrew Weil says that “it’s not the best way” to think of cancer. Cancer patients writing online and bloggers have also deplored this linguistic habit. “Does it mean that if I croak it’s my fault?” one asks.
Menakar goes on to say that he, as a cancer patient, agrees with this but only partially. He finds it more "calming, less victimizing" to take a "rational" approach to cancer in which it is a problem to be solved, rather than a foe to be vanquished. But when the rubber meets the road and action must be taken--surgery, chemotherapy, coping with pain, etc.--it is the military metaphors that can give strength, courage and fortitude. So, he calls for a dual discursive approach to cancer: in private and when necessary we should draw on whatever metaphors give us strength, but in public we should attempt only "rational, problem-solving" language in relation to this disease.

About 3 or 4 days after SB's diagnosis and surgery, TW and I began to pick ourselves up and we did so through military metaphors. We would look at each other, with tears in our eyes, and say things like, "We are ready for battle," "We are ready to fight," and we would refer to our doctors as the army or assassins. I remember that as soon as we started talking like this my fear and helplessness began to decrease. They never went away but they became something that had a context. I was afraid, not of a mutation and growth of an anaplastic pilocyitc astrocytoma, but of going to battle with this enemy. Using the precise medical terms for SB's condition was utterly frightening because it was so foreign, so complex, so unknowable. But using the military metaphors changed our perspective without losing any of the objectivity of the situation. It was still a partially-resected tumor, the behavior of which was/is unpredictable. But it was now an enemy that we must do everything in our power to fight.

Menakar, however, suggests that this use of military metaphors is "irrational" and removed from how things "really are." We understand this distinction in our daily lives, in our work lives, and, for me, in academia. We say, "Things aren't black and white. There are shades of grey," or "Things are much more complex than that." In academia, binary thinking is derided. Male/female, pure/impure, sacred/profane: these are cultural constructions (i.e., irrational ideas) that mask a much more complex reality (i.e., the way things really are).

It's funny, though, how our attempts to get at what is "really going on" lead us right back into the world of metaphor. For Menakar, the "rational," reality-based way of seeing cancer is as a problem or puzzle to solve. Is this what cancer really is? He later recognizes the problem: "Try as we may, we cannot scour the language of metaphor. Cancer itself is a personification." The word is derived from the Greek karkinos, for crab. This is what tumors looked like with their vascular tendrils spreading from the central node.

The point of thinking more deeply about how we speak of cancer is not to try to get at what cancer really is, or what is really happening to us when we have cancer. These questions are technical and belong to the realm of technicians. In the real world, the world in which we live and die, and fall in love, we need ways to speak of cancer that help us act in the face of terrible uncertainty. This is what metaphors--and particularly binary metaphors like war with radically opposed units--can do for us. When we know who we are and who the enemy is, we can act without thinking and without fear.

The concerns Menakar relays from others--that military metaphors set up those who die from cancer as "losers," "defeated," "vanquished"--are valid, but show that these critics have not fully lived and felt this military metaphor. Because soldiers who die in battle, and who die fighting like hell, are those we honor and call heroes.

Monday, September 19, 2011

How to keep a world

The other day one of SBs school friends came over for a play date. (SB is unable to go to school right now because of all his appointments and his new and changing physical disabilities). The friend's dad and I chatted outside in the backyard as the kids played. He told me how devastated he and his wife were when they heard the news of SB's tumor. This has been a common refrain from other parents. I've crafted a response for these situations in which I thank them for their thoughts and support. I tell them how strong SB has been and how hopeful and positive we feel about the situation. It usually ends with the other party asking about the latest treatments and such, and wishing us well.

This one went differently.

The dad said, "When you hear about something like this, I just don't know how you make sense of it. I mean, you don't want this to happen to anybody. But a 4 year old kid? How can God allow this to happen? How do you keep a world together when this happens?"

How to keep a world together. I loved this turn of phrase because, as a cultural researcher, I'm fascinated in how individuals keep their worlds together. One of the enduring findings of cultural research is that individuals maintain their "worlds" (by which we mean their sense of identity, purpose, meaning, orientation) by being embedded in communities. In this way, there is no such thing as a pure individual. Even the idea of individuality arises only through communities.

So, this question of how to keep a world together in the face of something as senseless as this hit me with some weight. I struggled to formulate a concise answer, and while I was fumbling my words I realized how central my academic research has been to my coping. (Disclaimer: The Wife [TW] also studied cultural theory and so I should say OUR academic research and OUR coping.) I know in my bones that nothing makes sense--not triumphs nor tragedies--without social connections. And so when cancer came to visit us, TW and I both instinctively knew we had to reach out and hold on--to each other, to our families, to our friends, to whomever we safely could.

We are not institutionally religious people, but directly next door to us in the hospital's PICU was the infant granddaughter of the personal assistant to an internationally-known megachurch pastor. You'd know him. Anyway, our families connected because of shared faith and one evening, an assistant pastor from this church was visiting next door and came by before leaving. He said he'd heard of what we were going through and wanted to pray with us.

I was the only one in the room at the time. I thought about it for a split second: I'm not formally religious, we would never agree on the meaning of this situation, or the efficacy of his prayers. But he was willing to reach out and I knew that I needed to reach out. He held my hands as SB was sleeping and said what I remember to be a quite lengthy prayer. It built, as a good sermon does, to a crescendo in which the pastor was begging God--I remember he said, "like a child tugging on the pant legs of his daddy"--to heal my son. I felt a strange distance to myself: I was crying and simultaneously analyzing my tears. Why was I crying? I don't believe in this sort of religious supplication. Yet, it's literally bringing me to tears.

I think the answer is that the pastor helped me "keep a world together" that night. The objective reality of his actions--whether prayer is real--isn't the issue. The meaning of his actions, how they helped me understand and make meaning out of our situation, was the real issue. The imagery of the child tugging on dad's pant legs, stuck with me for several days. It was both comforting and challenging. It was comforting because it made all my vague feelings of helplessness more concrete, more obvious, and thus less powerful. The more concrete and recognizable the feelings, the less power they had over me. But this imagery was also challenging because I didn't want to be a child in this situation. I have a child and he's sick, and he needs me to be an adult, a parent, a man.

So, how did I answer my friend on the back porch that afternoon? How does one keep a world together in this situation? That will be the subject for another blog post...

Tuesday, September 6, 2011

How we got here pt. 4

Four hours after the surgery began, the neurosurgeon came in the room and spoke with us. He told us that he was able to remove some of the tumor but could not completely remove it. He could not find a "plane" from which the tumor could be cleanly removed from the brainstem. He said he was disappointed and this "was not the outcome" he had "hoped for." We were stunned. I had no idea what faced us. I asked him, will we see you again? I wanted to know someone would be with us through this. That someone knew what the hell is going on, and this someone would show us the way.

I later figured out that this someone doesn't exist. And that it takes a lot of someones with different pieces of the puzzle to show us, not exactly the way, but to show us what our options are and to support us as we make our own way. In any case, we were total wrecks after the neurosurgeon left the room. We held it together as long as we could but as soon as he walked out of the door we grabbed eah other and let loose. The rest of that day is a blur. I remember returning to the hospital room and seeing SB unconscious, on a ventilator, hooked up to a tangle of IV tubes. It was a shocking visual representation of what we were dealing with. That Saturday was our low point.

The next day we went down stairs again, this time for an MRI. I remember sitting in the waiting room, weeping at every email and phone call I received. I couldn't talk to anyone, but just knowing that so many friends and family had our back and were pouring out their hearts for us sustained me that day.

How we got here pt. 5

Later that day SB was taken off the ventilator and was allowed to breathe on his own. Over the next few days they took him off anesthesia and began to remove some of the tubes. His first words were, "I have to go peepee." they were absolutely music to our ears. We didn't know what to expect after doctors opened up his skull and dug out a massive tumor. The neurosurgeon told us the day after the surgery that we should expect to see some neurological diminishment. So to hear him speak, though not clearly, was enough to sustain us throughout the day.

From this point on, the real battle began. Or should I call it a journey? Perhaps it's a pas de deux (or quatre)? Well, these are precisely the questions I want to work through in this blog.

Sunday, September 4, 2011

How we got here pt. 3

I wrote in the previous post that TW broke down while I remained stoic. This isn't a statement of machismo, because the next day we were both breaking down and by Sunday it was I who was a mess as TW comforted me. In any case, we awoke Saturday morning to the nurses readying SB for transportation to surgery. We watched Dora the Explorer and distracted him from his hunger (he couldn't eat after midnight.) It was crushing to us that he had no idea what was about to happen. We told him that he had a bump inside his head and the doctor was going to fix it. He would take a nap and it would all be ok.

We walked alongside his gurney, joking with him while holding back tears. After we arrived in the pre-surgery waiting area, we only had a few minutes alone with SB until the neurosurgeon arrived. I can't remember now what was said because my head was spinning. In fact, I can't remember much of what was told to us in those first few days. It was only on Monday that I learned the word Pilocytic Astrocytoma. I do remember being told the surgery would take 3 hours. We were in the waiting area for the next 4 hours, hopeful until the 4th hour.

Thursday, September 1, 2011

How we got here - pt. 2

When I dropped SG off at our friends' place, I told them that I'd be back in a couple hours and thank you so much for the help. My class was 2 hours long with a 5 minute break half way through. Just before break, I hear the text "ping" on my phone. I apologize to the class for leaving my phone on and let them go for a 5 minute break. I look at the text: "We're in an ambulance on the way to the hospital. SB needs immediate surgery." I'm stunned but I gather myself and think, "It's the sinus thing I'll bet. Maybe it was just a really urgent sinus issue." Yeah, I can do denial with the best of them.

I start to instinctively gather my things to leave before I even consciously understand what I'm doing. I begin to tell one of my TAs that he will have to end the class for me after break because I just got a text... I suddenly can't finish the sentence because tears are starting to form in my eyes. I breathe and say, "I just got a text that my son is being rushed to the hospital." I thank him and rush out, down stairs across walkways, down more stairs and into the car. I text frantically, "What is going on?" "I need more information." "Should I come now or pick up SG first?" Nothing is returned.

I decide to leave our daughter with our friends. I call them and tell them that I have no idea what's going on but SB is being rushed to the hospital for surgery and I'll come back later in the night for SG. "Of course," they say. "Leave her with us as long as you need." I rush down the busiest freeway in a America, back down to where we live. I don't even know which hospital he's in. Minutes later I get a text from TW: "It's a tumor."

I drive for 45 minutes, oscillating between stoic fortitude ("everything's going to be fine") and bewilderment ("what the f@*#!!!"). I tear up a few times but I'm mostly just stunned. It's not until I arrive at the hospital and see TW in the lobby for the first time that I fall apart. Not knowing anything yet, but just seeing the look on TW's face was enough. We held each other for a while and finally began to tell each other that it was going to be ok. She told me that there was a tumor on his cerebellum (later we would find out it was his brainstem) that was blocking the flow of fluid in his brain. He had severe hydrocephalus, which was the most immediate concern.We went up to the top floor, called "Pick-You," the Pediatric Intensive Care Unit, and into our son's new bedroom. He was cheerful even though he had IVs in both arms. He was watching a show and eating a sandwich.

For the remainder of the day we would get a crash course on the brain and brain tumors (by the way, I do cultural research, I'm as far from hard science as you can get.) It was so overwhelming that I couldn't process it. I remained stoic and hopeful while TW broke down. I cancelled my DJ gig and spent the night on a mat next to his hospital bed. When we woke the next morning, the nurses were preparing SB for surgery.

How we got here - pt. 1

How did we get here? Our son (I'll call him Super Boy [SB] in blogland) has a tumor growing in his brain (anaplastic pilocytic astrocytoma for those who are counting). He is undergoing chemotherapy, does not have full use of the left side of his body, and has a mechanical device implanted under his skin for administering drugs and drawing blood. All this has visited us within the span of three weeks. Our lives have turned upside down.

In late May, we began to notice an increase in tripping and falling. More skinned knees, more scraped elbows. Was it a growth spurt? Was he too tall for his 4-year-old motor skills? Maybe it was these new Crocs? We just told him to watch where he was walking. In June we noticed he was afraid of stairs in a way he never was before. He would go very slowly while holding on to the railing with both hands. In July, he scraped his knees from tripping and falling almost everyday. Finally, toward the end of the month, on a Friday, I got a call in the morning from his preschool: "It's not an emergency but SB can't walk without falling right now." In a hushed tone, the teacher said, "It looks kind of like he's drunk. We're concerned." I knew she wasn't accusing me of drinking with my son--in the morning no less! Her voice conveyed a deeper concern. I told her that I would be right over after I schedule an appointment at his pediatrician. 

Later that day we visited SB's doctor, a wonderful guy with three young kids. He looked SB over: no ear infections, nothing unusual anywhere. He observed SB walking and noticed a slight lean to the left, but nothing overwhelming. Maybe it's his eyesight? Maybe some strange allergy? Opthamologist and then blood tests. Neither sounded plausible to me and The Wife (TW), but what do we know? Over the weekend, we became a little more concerned as we paid closer attention. Now SB wouldn't even go down three small stairs. He would sit and scoot off each step. 

He had a couple really hard sinus infections in the spring. Could it be that there's something wrong with his sinuses that is playing havoc on his balance? Maybe we need to see an ear, nose and throat specialist. We figured we would just wait for the blood tests and opthamologist to play out first. Then, the next week, on Thursday (after the blood test but before the opthamologist) SB fell off his bunk bed ladder in the morning. After hearing the scream, I ran into the room to see him on the floor crying uncontrollably. I ask him if he can get up and he says no. He looks fine but can't balance at all. I help him stand up but he falls over (again, as if he were drunk). Within 5 minutes he has calmed down and his able to walk, though very unsteadily. 

I take him to school and tell his teachers about the incident. I tell them I'm calling the pediatrician to schedule an appointment with a specialist ASAP. I still don't think this is a big deal. He's walking fine right now, right? One of the teachers, perhaps sensing a deeper fear in me that I couldn't acknowledge, puts her hand on my arm and tells me it's going to be ok. I remember thinking, "Of course it's going to be ok. Why tell me that?" I call the doctor's office as soon as it opens and the receptionist tells me the doctor will be call me as soon as he can. 4 hours later I get a call back and I describe what happened that morning. I tell him that we would like to see a nose, ear and throat specialist. He says, first thing we need is an MRI. Immediately. The morning episode could have been a seizure and we need to see what's going on in his brain as soon as possible. His office scheduled one for the next morning. 

Ok. Would you be worried yet? My family has a pretty good health record, nothing major until the later years. I had no reference point for such concern. I was thankful that we would get an MRI so that we could get to the bottom of this. Maybe it would require surgery on his sinuses or something. The next morning TW and SB would go get the MRI while I would go to my college teaching job 40 miles away. (Side note: we have a 17 month old daughter, Super Girl who wasn't going to be starting childcare until the following Monday.) I was going to drop Super Girl (SG) off at a friend's house before my class and pick her up afterward. We would all meet up later in the afternoon for a family date night...