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.

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."

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.

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.

Helping

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.

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.

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...

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.

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.

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...