Parallels and Contrasts

It is all too easy to feed off of birthdays, anniversaries, and other meaningful demarcations of time. How long since, how long until? In the x days since returning home, we have done y activities and Colin has achieved z milestones, giving us something to plot and chart in three dimensions.

In Memphis, I had imagined Colin’s third birthday as a magnificent celebration of his continued lease on life and the return to normalcy. In reality, it has been difficult to plan and I have uncovered my own friction against doing something on grand scale. Part of it is happenstance; my 20th college reunion happened to coincide with Colin’s birthday, and that served doubly as an opportunity to visit my mother.

However, the raw truth of it is that the birthday of a child who missed his second birthday party because of the diagnosis of his brain tumor held unbearable emotional moment. The day got swept into a rush of reunion activities. Within the same hour, Colin was showing his g-tube to a curious little girl while I fed him and explained his differences and then Aidan was whizzing along a Tyrolean zip line over Beebe Lake on Cornell’s campus.

Here is something else to plot: the importance of the celebration of occasions versus the daily appreciation of the same things. If there is nothing I have learned in the past year (and it is, precisely, a year), it is to enjoy today because today is the only day that any of us has got. I relish smiles, giggles, impossible behavior and delightful revelations. I honor being married to somebody who can let go of the formality of a wedding anniversary so I can fulfill expectations of my job, demonstrating in real and symbolic form that I am back on the scene.

Contemplating the course of Colin’s treatment as a whole is easy, but remembering the difficult moments is, as they say, not so much. I have avoided thinking about the dizzying revelations of Colin’s tumor on that Sunday a year ago and, a month later, the dire news of (fortunately phantom) spinal metastases. Even after hearing the initial news of the tumor, I had to catch myself from freefall and remind myself that I did not know what this meant; maybe it wasn’t so bad.

A year ago, “not so bad” meant “not disruptive to my concept of life.” Today, it means deficits that will recover and the fact that we have even odds of a cure. I don’t know what side of the odds we live in, so I can neither dwell in the place of questioning nor lose touch with that reality.

If I falter, I can drag myself back into the harrowing scene of Colin’s blue face, eyes fixed in an unfocused gazed at the ceiling. How often do I need to relive that day beyond the fleeting moments when that image flits into my mind unbidden? I cringe to think just of the days of chemo misery or the long, slow wait for his counts to recover.

Unless febrile, other children went home, but he just looked and felt too crappy to leave the hospital. Submerging myself into the past year of experience, expectation, hope, and all the emotions that I glossed over or pushed aside in order to keep my nose to the grindstone of daily life really is too much to bear.

There was no place for fear, so I compressed it into small corners where it dare not leap out at once or else it threatens to overwhelm. I belabored every decision and constantly asked the question of whether this was worth it. In the end, I can look back and say that, at every major juncture, we did everything that we could. I don’t know that we could have produced a better outcome, but I do know that we acted as well as we could at each moment and embraced the humility necessary to step down a new path.

The Many Faces of Colin

One thing I have discovered since returning home is that Colin looks much worse on paper than he does in person. We receive constant reinforcement of this, both from people who have followed his story and understand his journey and medical professionals. The course of medical treatment alone suggests a much more impaired child.

On our first meeting with Dr. Sandoval, our local oncologist (I described him long ago when Colin was in the ICU at Westchester but will take a new approach by saying that he looks like the love child of George Hamilton and Ricardo Montalbon but with the inexplicably unexpected accent of Tony Curtis in Spartacus), he commented that Colin was “better nourished” than he had expected based on the report from Dr. Gajjar.

On the second meeting, Dr. Sandoval remarked on Colin’s strength, as it was very difficult for me to hold him still for the port needle stick, and let’s say that it’s a good thing that the good doctor already has a family.

Colin is robust and surprisingly active. At home, he has been getting much more exercise than he had in Memphis. The distance between his bedroom and the living room is at least twice the entire length of our apartment at Target House. He scoots all-too-quickly up the stairs and now negotiates himself downstream almost as quickly.

Before his diagnosis, we always described Colin’s build as that of a 19th century strongman. He is exceedingly sturdy and accordingly rough. Although inactivity and steroids (counterintuitively, decadron wastes muscle rather than building it) changed his body composition, once he started coming around physically and mentally, he also bulked up and lost some of the baby fat. In the few weeks since returning home, he has become noticeably stronger and more muscular.

Best of all, Colin is more social than ever and has exhibited surprising self awareness about his situation and his deficits. He seems to enjoy participating in the explanation of his cancer (points to his head) and deficits (points to his trach), adding even more hand gestures to describe how he eats through his g-tube. This is also a good opportunity to tell others and reassure him that these are all temporary and that he will be walking, talking and eating soon.

Really, We’re Used to It

That said, Colin remains medically fragile, always on the precipice of an emergency or proto-emergency. A week after returning, Colin’s nighttime heart rate was spiking downward precipitously, down as low as the 40s. We contacted the neurosurgeons at Maria Fareri, our original hospital (the circle completed!) and opted to take him in for a Friday afternoon assessment, when they were able to do a rapid MRI. Otherwise, if we were to bring him in over the weekend, we would end up giving him another CT scan and another dose of radiation.

The pediatric resident, after I had just started in on Colin’s medical history, asked if there was anything else and said, “As if that isn’t enough!” But wait, there’s more! If you order now, you get fungal endocarditis (read: heart infection) plus a bonus venous thrombosis (read: post-surgical blood clot in his head), pay only shipping and handling. Colin’s history contrasted sharply with a surprisingly normal looking nearly-three-year-old who was contentedly watching Dragon Tales and scribbling a bit in a coloring book depicting the hospital.

On that note, perhaps they should just get normal coloring pages instead for children like Colin who have wised up and associate the hospital with very unpleasant things. As soon we got out of the car and he saw the building, he started complaining and pointing to his head. Hey, I remember what happened when we came here before! Those guys cut my head open and I got stuck in a room where they wouldn’t let me out at all.

I promised him that it was just to take pictures of his very photogenic head and there wouldn’t be any pokes. I was not entirely right about the latter point, since he ended up getting his shunt tapped and fought every second of it. My only satisfaction was that he was fit enough to make it difficult, proving that at least something was working right.

If nothing else, that Friday afternoon was a test run and helped establish a baseline for doctors who hadn’t seen him for nearly a year and would reasonably expect him to be in rougher shape. It was nice for the people who made the first foray into Colin’s cranium to take a look at the imaging of the intervening months. We got a different perspective; if not an actual different opinion, a different articulation of it.

In particular, it is now clear that there is no pressing need for Colin to continue the Lovenox shots past July. Six months of treatment is at the far range of the norm, and there is no demonstrated benefit to doing it while there is a definite drawback to Colin of having us assault him with a sharp implement twice a day. He has gone from exclaiming “No! No!” and warding me off with desperate waving to simply covering his eyes and squirming. This results in anxiety at best and injection mishaps at worst.

Shell Shocked

Returning to normal life has been disorienting for me. Especially when I’m at Aidan’s school, I’m usually in a bit of a daze, but I also marvel at the chaos of Trader Joe’s and other activities. I didn’t do a lot of shopping in Memphis and wasn’t particularly good at dealing with the crowds there either, but I am even more aware of how strange it is for people to get so uptight about picking out which stuff they want to take home.

The first day I went back to New York for work, a driver behind me became enraged when I obeyed the traffic laws and stopped when my green arrow disappeared. After rounding the bend, he leaned on his horn and gesticulated wildly as he passed. It turns out we were making the same train and had ample time, but for some reason my reluctance to take advantage of the other drivers’ sluggish response to their own green signal was too much for him to handle.

It is easier to have compassion for that kind of behavior than become angry in turn. By easier, I mean that it is not necessarily one’s reflexive reaction but it is the one that has the least residual effect. I marvel that people can exist on this planet a certain amount of time yet not learn at least the basics about prioritizing.

The problem with returning to normal is that I have no desire to shed the lessons I have learned over the past year, and I fear that there is some risk of that. It is so easy to slip back into old grooves. Going back to the office for one event, we were remarking how most of the women seemed to wear gray suits. I used to joke about the sea of pigeons at industry events even while gladly hiding under the anonymity of the same uniform. There is enough about me that is off-center that I feel comfortable blending in with my clothing.

Walking back to Grand Central on my way home, I took some pleasure in being just another gray suit blandly walking through clusters of disparate demographics on different missions on a summer weeknight a touch too warm for a jacket.

There was the group of Young High-End Business Casual out for a fun time of one kind of another, maybe just a couple of drinks or perhaps something that would end up at Scores. A mother shepherding a child who had tired of sitting inside a restaurant and now amused himself walking along the wide ledge of a long, low concrete planter. A mixed casual group, mostly on the older side, enjoying a social evening together.

If nothing else, being away from home has given me a fresh appreciation of the mundane. I would hate to allow that new lens fade and instead return to my old impatience of tourists and focus on clip-clopping home while losing the present moment.

The train ride home, I ruminated on the various meanings of June 14th: Colin’s diagnosis; Colin’s original due date; my wedding anniversary; Flag Day. Which should take precedence? Sadly, I don’t even know what we’re supposed to remember on Flag Day, though Wikipedia informs me that it really does have to do with the adoption of the American flag.

The parents of all children with cancer invariably attach great significance to birthdays. The year we didn’t think we were going to have and so forth. I am not immune to it, yet I also think that Colin’s birthday should be no different from any other person’s. We inadvertently diffused the impact of this particular anniversary, but I don’t want to start believing I can be less thankful on another day him or Aidan. The milestones and miracles come with every breath, but they are hard to notice that way. I have the mission of trying but permission to falter.