Serial 11:11 of "The Emily Updates"
Sharing a 30-year-old diary of my firstborn toddler's cancer battle
Chapter 3 (continued)
Many Deadlines, Two Lifelines
Emily Update #11 (27 March-3 April 1995)
Em enters week 36 with 29 to go. The next round is in late April and we expect a very bad time of it. We may well suffer our first hospitalization. We hope to have baby well in hand by then, but if need be I’ll go in with Em because Vonne will be nursing. We’ll just make it work – one way or another.
Em herself is just fine as the week progresses. On Wednesday, our homecare nurse Kathie Clemens performs a blood draw. The key number is her 1,075 neutrophil count, as anything over 1K means her immune system’s basically on-line. These numbers officially end the last round, creating our biggest breathing space so far – two whole carefree weeks before we need worry about keeping Emily healthy enough to begin the next round. Hmmm. Let’s have a baby!
Like anybody else, Vonne gets a bit nervy as the due date looms. But this time there’s the added pressure to pull this off without a hitch, as we can ill-afford any extra medical crises or even setbacks right now. To put it plainly, down time is not much of an option for us, for the other show has to go on – no matter what. So we try to play it cool and think ahead as much as possible. For example, we’re trying to stay well rested, plus we’re showering Em every night to give us the greatest possible leeway regarding her dressing changes.
This week both Vonne and I enjoy lengthy phone conversations with our social worker Yvonne Bush, who wants to hear how things are going with the pregnancy. During my talk with her, I describe the updates and offer to put her on the list. Naturally, it’s an interesting perspective for someone who works with families on a professional level. The quid pro quo is that Yvonne will alert us to issues we may want to cover, focusing on the best output for Emily years down the road. As I wrote earlier, we consider the updates a long-distance letter to an adult Emily trying to make sense of a bizarre experience she can only faintly remember.
As I inform Yvonne, I tried to write a history of the whole July hospital experience last September, but trashed it after penning 20 pages. Why? It was still too fresh and painful. The desire to block out the memory remained profound. It reminded me of the blackout I felt after finishing the Marine Corps marathon, when for about two-to-three hours following the race I was simply too mentally depleted to think back to any part of the run. Like then, I simply had this huge blank spot in my brain about Emily’s cancer. I could only deal with it for a few hours each day. The rest was either la-la land, or alcohol, or both. It really wasn’t until January and the breaks between rounds that I found the energy or enthusiasm to write anything. Time had finally shifted far enough to dull some of the psychic pain.
Still, I’ve actually caught myself unconsciously wincing when I encounter references to the 4th of July. Is that holiday going to be ruined for me forever?
Of course, the special event we’re about to celebrate also traces its roots back to that week in July. If that nifty twist of fate hadn’t occurred, neither Vonne nor I can say whether we’d have tried again to conceive. I don’t have the foggiest idea, and wouldn’t even know where to start the search on that one.
Strange to admit, but once Em was diagnosed, I started feeling sure Vonne was pregnant. It’s like this movie where the foreshadowing is so obvious: Vonne instinctively stays away from X-ray situations, while I instinctively volunteer to go in with Em. Thing is, we never speak a word about it during those two weeks in the hospital, until the last day when we meet with the geneticists. Then and only then do we openly acknowledge the possibility to one another. A few hours later our suspicions are confirmed – the day our world stood still.
It was like we entered a very strange world where everything is at once possible and impossible. Of course Vonne’s pregnant! Emily is staring down death every other day. What else could have happened? But this small, happy thought has buoyed us both since. It’s this little island to which we retreat, sometimes in search of pure joy and sometimes to engage in our darkest nightmares. But in a world with lots beyond our control, this little island feels very much our own.
Sad to say, but the island metaphor is more apt than it should be. Vonne is and has been very alone in this pregnancy. I feel very bad about that and always will. Yet her efforts to carry on despite all light being sucked into the black hole of Emily’s cancer have been nothing short of magnificent.
I think back to a particular scene at Paisan’s, the Italian restaurant where we both worked and first met as college students in Madison, Wisconsin: it’s a Saturday night and Vonne’s waiting on one of the two big tables in the back, near the kitchen where I work. She’s handling this large crowd of rowdy post-game Badger fans. It’s one of those dreamy movie shots: camera zooms up on this beautiful profile. You see her lips move and she laughs, but there’s no sound save the musical score. All I can think is, God, I could really see spending the rest of my life with a woman like that. Nothing crass. Just a simple and good feeling. A sense that she would be someone to admire over the course of a lifetime. Someone to grow old with. Someone to trust across 360 degrees. It’s a moment of clarity I’ve never forgotten, one I’ve thought about a lot over the past months as Vonne’s courage and strength have confirmed every bit of faith I’ve ever placed in our relationship. She remains both a great unknown and the closest friend I’ve ever had. I don’t imagine I’ll ever figure her out completely, but much ground has been covered in recent months.
Actually, speaking of lust reminds me of one of my favorite Russian short stories. It’s about a guy who falls in love for the first time with a fascinating woman and wakes up the morning after. He rises out of bed and, looking out the window, is shocked to see a tiger come crashing through the glass. After that bit of excitement, he discovers he can fly and . . . well, you get the picture. All sorts of fantastic things start happening to him after that magical night. After this moment of discovery, everything is possible and nothing impossible.
I first read the story about the time that I fell in love with Vonne – if you know what I mean. It captured exactly how I felt at the time – life was full of magic. It was like I had passed over a threshold into some new and mystical world.
July 8, 1994 gives off a similar feel – just the flip side. In a way, it was pleasantly centering in all its evil. Vonne has often described the cold comfort derived from knowing fully the worst things possible. I compare it to discovering something bad about the house and feeling better once the extent of needed repairs are known – no matter the cost. There is that feeling that the fickle finger of fate must eventually point at your child at some point in life. The devil will come in some form. That you can predict. Strange, but in a Nietzschean way, this whole process has strengthened more than it has damaged. It’s just many years of parenting wisdom being force-fed in a matter of minutes.
Don’t get us wrong. We know it could have been much worse. We didn’t have to dive over that particular cliff, but we’ve dangled over it for quite a while and had time to focus our sights on what lies below. Like the rock climber who’s fallen a long way only to have his ropes hold fast, we’re acquainted with the fragrance of death. We’ve breathed deeply, dangling there, waiting for modern science to pull us back up to the edge.
There’s the notion that if you let your fears gain the upper hand, you’ll die a thousand deaths. I guess we’re just saying that our fears require no leash. They lay obediently at our feet now. They’re not going anywhere, and neither are we.
Still, it’s more about rushing toward the experience than hanging back and hoping it won’t notice you. When I taught at Harvard, I used to describe the German philosopher Georg Hegel in the following terms: his theory of semi-deterministic history is like being in a canoe floating down the river. You pretty much have to follow the course of the river. That much is set. However, knowledge of that river can be put to use. It just requires an aggressive acceptance of life’s major outlines. Like the canoeist who paddles his boat to move faster than the current so he can steer within and across currents, if you want to move within your life – that determined progression from birth to death – you need to move faster than the current of events.
If you want control, you have to move faster than events around you.
Vonne and I have a number of ways of keeping our paddles in the water and moving: St. Andrew’s; that comfort that only comes when talking with your parents and siblings; friends who step forward to treat you far better than you can possibly reciprocate; writing the updates; continuing to rehab the house; enduring your pregnancy; focusing on next steps for your kid, despite snafus caused by the chemo; and so on. All these things give us a sense of moving faster than the current – perhaps this new baby most of all. That first week in July is the purest expression of hope either of us will ever know. We knew exactly what we’re doing by still trying to conceive. Amidst all that smothering fear and uncertainty, there was this strong sense of purpose that our love had created over the years. There was no debate, no questioning, and only superficial renderings of self- doubt. Instinctively, we knew then – and know now – that our survival depends on moving faster than the current. It’s either that or kiss it all good-bye.
As far as Em is concerned, we’re pretty much her paddles. Em’s entire emotional support system seems buried somewhere in Vonne’s embrace. She draws so much of her strength from her mother. Vonne is where she goes to retreat, to repair her spirit, to rest. It’s very draining for Vonne when combined with her pregnancy – not to mention the degree to which I depend on her.
As for Dad, he pretty much does what dads do for little girls. He is the one who guides her through all the bad experiences in real time, playing both devil and advocate. The one who can scare her into stillness during a horrible procedure and then provide enough support to keep her fears at bay. It is a skill learned in the worst ways imaginable – nothing to aspire to. As with Vonne, it’s draining, but at least you feel useful. Emily draws from me the courage to try new and scary things. It makes me feel good as a father, even if these feats only become real to Emily when she reports them to her mother. It would be easy to envy that mother-daughter connection. But all I need do is remember gazing upon Vonne at Paisan’s, and then I feel grateful I was fortunate enough to recognize my future staring me in the face all those years ago.
I must confess: my drive for keeping a clean house has reached scary proportions lately. On the eve of visits to the clinic, I can only feel safe if the whole house is spic and span. That sense of mastery over things you can control is quite comforting. It’s like you have to grab all the control you can because your absolute lack of it will be regularly shoved in your face in this cancer experience. Either way, Vonne says she’ll keep me because I work so cheaply.
The beeper has worked out pretty nicely, especially as I spend more time out of the office. The pager has a weird feeling of a talisman; like I can leave all my cancer worries in this small electronic device. Then again, there’s that feeling that this damn thing can reach out and grab you whenever it wants.
A tale of fate: When I was hired at my present job, it was only three days before the company was going to cap admission into the HMO they offered as part of their health care menu. It turns out their traditional insurance provider, Aetna, was forcing them to do so since the young and healthy were gravitating toward the HMO and Aetna was being left with the rest. A foresighted human resources person told me to take the HMO, since, if I didn’t like it, I could always switch, but if I wanted it later it would be impossible to enroll. That advice probably saved us a great deal of money. As it turned out, our social worker Yvonne reports to us that our HMO, Group Health Association, offers the best coverage she’s ever seen. Shortly after the diagnosis, medical giant Humana bought out Group Health, but we’ve been assured there’ll be no policy changes in the near term, and we haven’t seen any yet.
That’s not to say that Dad hasn’t picked up a part-time job of being regularly on the phone with Humana, Georgetown, Caremark, and various physician groups over recent months, or that it didn’t take him several months and dozens of phone calls to whittle a $42,000 hospital bill to zero. Still, I would estimate our total exposure so far to be less than $250 in bills actually paid. Of course, we lose a lot in Vonne’s wages, her progress in school, driving to Lombardi, parking at Lombardi (even at discount rates), all the prescription co-pays (even at a mere $5 a pop), and the . . .. Nonetheless, Humana has been true to its word in terms of providing comprehensive care. We’d cut a commercial tomorrow.
The Em-Cat hair watch continues. She’s getting pretty darn fuzzy and – to our amazement – it’s still quite blond. That’s surprising because it always looks so brown as it comes in. We must admit, it’s better to see it regularly burned off by the chemo and then spring back than it was last fall to see it fall out strand by strand. A pale kid with 30 or so single strands of pale blond hair is not a pretty site. In fact, it’s damn spooky. Her buzz look is much better, and if she misses her hair, she can always play with her dad’s now flowing mane. Call it projection, transference, whatever: the longer Emily is bald, the longer I grow my hair.
Vonne sees her midwife for what we assume is the last time this morning (30 Mar). Tomorrow is the due date. The midwife says she’s now three centimeters dilated.
Well . . . [time passes dramatically].
Vonne goes into labor a few hours later. It starts up rather erratically just before noon, but gets serious around 2pm. An hour later, she pages me for the first time while I’m attending a conference on U.S. foreign aid. By 3:18 we agree that the show is on. A cab ride later and I’m home at 4:20. A few details to take care of, packed bags to load into the car, some quick food for Em and I, and then a phone-call to our midwife, the wonderful Linda Hewes, who delivered Em three-plus years ago. She listens to my description of Vonne’s serious concentration, takes in the data on contractions, speaks briefly to Vonne herself, and says, “Head in now. This is moving too fast to last.” Our friend Vickie Sands arrives at 5:25 to watch Em. We’re out the door ten minutes later.
Somehow I manage to disable the automatic shoulder belt on the driver’s side while getting into the Honda. For the first twenty minutes of the ride, the seatbelt alarm goes off like some sort of internal siren. Pretty neat! Finally I get the damn thing to shut up. We arrive at Arlington Hospital at about 6:15. Vonne is quiet the entire ride – not a peep. She simply closes her eyes and concentrates on breathing through the contractions, never losing her cool once.
We breeze through admittance because we’re pre-checked. We get a big single birthing room with wood floors, a head, and lots of room with extra chairs. Two minutes after we arrive, in drops Linda. She spends the entire time with us, which is darn nice of her because it pushes the bureaucratic envelope. Humana recently decreed midwifes can do pre-natal work but not deliveries – go figure.
So there we three are for the next hour, calmly chatting, keeping quiet during Vonne’s silent contractions, and helping her with the fetal monitor when we finally surrendered to the idea of a baseline reading. Still, we demand to keep the door shut and the monitor’s sound off (a truly useless annoyance). With Vonne emitting nary a sound, the scene’s preternaturally serene. To pass the time, Linda quietly describes her philosophy of midwifery and natural childbirth. She also helps us interface with the nurse and OB – both nice enough ladies. I have my heart-to-heart with the obstetrician and all seems well (we’re assured that no clock is running). At 6:45, Vonne is six centimeters dilated and appears calm.
We’re in that quiet limbo until 7:20, when the water breaks and the news isn’t good. It’s full of meconium, or fetal fecal matter (try saying that fast three times in a row). Linda and I talk in whispers as we clean up the mess. Twenty minutes pass and it’s 7:40. Then Vonne whispers that she’s feeling pressure to push. At that point, she brushes off the doc and her personal history questions, dropping back into that sleep-like quiet that is the leitmotif of the Bradley method. Linda and I are tending to this and that, and all of a sudden – mind you, without even so much as a moan from Vonne – we notice the baby’s head is crowning. That’s when Linda suggests we let the OB join the party.
By the time the doc gets in, the head is all the way out and facing down. As before, I get stuck holding up Vonne’s leg (this time the right one), as she’s in the Bradley sleeping position on her left side. Then I see the doc dive in with clamps and a pair of scissors. Just before I’m about to yell about not wanting an episiotomy, I notice the cord is wrapped around the baby’s head. Once cut, the baby is out in a quick splash. At that point, we know that Kevin Clifford Barnett is one big kid.
Well, the next two hours Kevin is pretty much out of our hands – save for a few bonding minutes. Not to our liking, but necessary as he ingested the meconium into both his digestive and respiratory tracts.
In the end, Vonne pulls it off without one yell, one grunt, or one second of lost composure. She’s a marvel to behold. Linda is stunned even more than the first time, but simply notes that Vonne is someone with a great amount of physical and mental self- mastery. She declares it a stunning performance from start to finish. I can’t agree more. No nurse on that floor that night can believe that a woman delivers a 9 pound, 11 ounce kid without any meds or apparent discomfort. They go on and on about it at their station for some time afterwards. Vonne is up and walking within an hour, eats a meal, and breastfeeds a very hungry Kevin at 10:30.
The little man’s official time of birth is 7:44pm – mere hours before the due date of 31 March. Emily herself was born at 7:50pm, mere hours before her own due date. Vonne is indeed the master of self-control and timing. Fitting her mania with never being late, she always delivers a few hours ahead of schedule.
The next evening Em and I swing by the room to pick up mother and child. We’re all feeling pretty satisfied tonight.
One down, one to go.
