I have finally caught the cold that has been traveling around my co-workers and spouse with a speed that would excite any epidemiologist. I wake up Friday morning feeling as though I’ve been hit by a truck, then run over repeatedly while clowns tap me on the side of the head with hammers. I also feel mentally out of sorts — the perfect reason to envision said clowns in the first place.
This ickiness will not stop my inevitable stint on hospital duty. Vampbaby’s counts are high enough that, as long as I don’t sneeze on him and continue to Purell my hands like someone with OCD, he should be fine. Never mind that, usually by the time a cold manifests itself, you’ve already passed it along the sniffle chain to someone new. I take the morning off to sleep, lying in a stupor until about 10:30am. I slowly rise and make myself look presentable for a short cameo at work, then finish packing my belongings for the trip to hospital.
I head to work, and once again the clowns are preventing me from focusing on a meeting that I should probably pay more attention to. I make my way through and quickly leave the office, before scores of emails and phone messages threaten to suck me in.
The trip into Boston on these days is always a bit of a downer. Sure, spending a weekend in the hospital is an obvious reason to be blue, but I tend to get overly in-touch with my emotions when I’m sick. Perhaps it’s that — or, perhaps like a fool the only things I have in my cd player are thoughtful and sometimes depressing pinings of Tori Amos, Innocence Mission, Denison Witmer and Shawn Colvin. Either way, I am trying to keep myself as upbeat as possible. The emerging view of the Boston skyline helps somewhat. Having lived there for 10 years, my wife and I still consider Boston our true home, even though we now live back in the burbs from which we came. Sometimes I wonder if the essence of Boston isn’t somehow just what we need to get through this.
The hospital greets me with the familiar sound of the metal clanging of the sculpture in the lobby that is equipped with wooden balls that bounce through a maze of tracks and platforms, and the smell of the Au Bon Pain which serves as the only non-hospital cafeteria food option in the complex. While I lived on “the pain” on many a day through college, I am quite convinced that when this experience ends, I will NEVER set foot in an Au Bon Pain again.
I drag my suitcase and Vampboy’s plastic car to the elevator and make my way to the floor. Unlike earlier in treatment, I am not greeted with a son who looks like, well, death. On this night, Vampboy is playing and happily babbling, looking full of life while three thin plastic tubes run from the port in his chest to the pumps, which quietly whirl and click as they administer chemotherapy. I inhale some dinner and unpack, while Vampmommy gives me the update and Vampboy takes a stroll around the floor in his car, pushed by his grandmother. There will be many other drives over the next two days.
I complete my transition from “Workingman” to “Cancerdad“, all the while wondering if I’ll be able to function through the cloud of snot and haze in my head. Vampboy and I fight over going to sleep. I win, but not until almost 10pm.
When you’re a frequent guest at Chez Healing, the inconsistencies and poor management that is the nation’s health care system come into focus. For one thing, this hospital treats lots (and I mean, LOTS) of kids with Cancer. So, knowing what the treatment is often like, you’d think that they’d have the right quantity of proper equipment to address the need.
You’d think – but of course you’d be wrong. In our case, the holy grail of chemo tools is the “Triad”. This is a single machine that can infuse multiple drugs at once. Vampboy’s chemo cycle this weekend requires he receive three drugs at once — Doxyrubicin, Cyclophosphamide and Fluids. However, there is no Triad to be found anywhere in the vast expanse of the hospital. This leaves Vampboy’s nurses to gerry-rig three individual infusion machines to one IV pole. The single infusers have weaker batteries as well — so on top of being a cumbersome burden for the parent of a young child who demands mobility, freedom is limited between the “low battery” warning that beeps with almost nightmarish regularity.
Vampboy and I deal with this lack of capacity as best we can, and I take every moment he is still to plug the machines into any outlet I can find. Vampboy helps at one point by becoming obsessed with the play kitchen in the floor’s rec room. For an hour and a half he fries a bagel in a pan, runs it under water, then places the bagel and pan in both the microwave and oven before returning it to the cabinet. Then the cycle repeats. It won’t be until Sunday morning that he realizes he should try to eat it — which isn’t really productive, as he discovers he’s not crazy about the taste of plastic. He makes me eat it instead.
There is little action on the floor on the weekends — the play room isn’t staffed, so we’re in there for the most part alone. The rest of the floor, used largely with patients with neurological issues, is pretty empty on this weekend. Vampboy and I spend a lot of time wandering the halls with him in his little car. He sits quite contently, looking about and grinning at the nurses and other hospital personalities who coo and “awe” at his cuteness.
When Vampboy is receiving his chemotherapy, he’s not allowed to leave the floor. During this cycle, it means three days without exposure to anything remotely resembling the outside world — the world literally stops at the elevator. To mix things up, I alter our car’s direction through the halls of the floor, weaving into some areas we had not traveled yet. It is a chance to quietly observe a world that few parents — thank god — ever get to see. Since other wings of the floor deal with a variety of issues, you see the true scope of what it means to have a sick child:
*In one room there’s a teenage boy, with an ice pack on his shoulder. I never see any visitors in my multiple trips past his room — no parents, no friends. However, he seems like he’s in heaven, looking happy and relaxed as he skims an issue of Men’s Health and watches TV.
*There are babies — many, many babies. some are sleeping under plastic mini-tents which provide oxygen, while others just sleep (or cry) in the hospital cribs. Some have parents by their bedside, but some don’t. I wonder what on earth those parents are doing instead of being near their child. I hope that it’s only a moment of self-care in the face of stressful caregiving. The other alternative seems impossible for me to conceive of.
*We pass by several kids who’s bodies are contorted in their beds — perhaps MS? Who knows, but there’s one wing that seems like it’s occupied by kids who probably live there more than at home. Windows in the rooms are painted with “Go Red Sox“, the kids names, or animals of some sort.
*We walk passed one room where a teenager is having a nervous breakdown, demanding to be immediately discharged from “this hell-hole”. Of course I have no idea what’s going on with him, but he doesn’t seem as physically bad off as kids in rooms on either side of him. I wonder if he’s taken a look around.
Vampmommy makes her way back to us in the afternoon, and we switch off once again. She and Vampboy walk me to the elevator as I update her on his chemo regimen and the plans to finish up treatment and get them back home Monday night (yes, tonight). At the elevator I am sent off with a hug and a very boisterous “BYE” from Vampboy as he wheels off for another automotive jaunt around the floor. This leaving is not as difficult as in the past, where his screams and reaching for me broke my heart and my spirit. Perhaps, I think as I leave, he will continue to tolerate his treatments as well as he had these last few. Perhaps those days of him looking like the end was near are behind us.
I re-enter the outside world, feeling a little better about the weekend that was. And, for the moment, the clowns have stopped hitting me in the head. I hope they don’t come back.