Serial 10:11 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 #10 (20-27 March 1995)
Already I regret all the Rosa bashing of last week. After further research (the glories of sniffing basement carpet), I conclude that maybe we’re looking at some sort of urinary tract ailment. “Now I got three women under medical care!” I say to myself. I take Rosa to the vet on Monday night and guess what? She doesn’t like to pee for doctors any more than Em does! So Rosa gets a whole day at the vet’s on Tuesday, with IV and all. Honestly, I can almost hear Jerry Springer ringing my phone: females who won’t pee on demand and the men who love them. Anyway, the test results were . . . NEGATIVE!
Seems that with Emily battling cancer, Mom nearing labor, and Dad working the biggest challenge of his career to date, it’s actually Rosa who’s having a nervous breakdown! All nine pounds of her quivering body! The doctor thinks it was most likely due to the discombobulation caused by redecorating the basement. And of course, once Rosa pees a couple of times on the carpet, she gets a taste for it – like some serial stainer of carpets. Feels kinda funky and fun. Well, massive cleaning efforts have been made and the litter box is now back in the bathroom. And we thought Emily’s stubborn about changing her potty habits!
More generally I apologize to Rosa since she really has been – for close to a decade – the world’s best cat. She never misbehaves in any manner, is very loving, and suitably deferential to any kid. She also catches any basement bugs and eats them, and she’s nailed a mouse or two in her time. All in all, she’s the best cat we’ve ever owned, and I regret every bad thing that I’ve written about her. I know both our families are full of cat-hating dog lovers who look for any opportunity to malign poor Rosa, but fear not my feline friend, I will betray you no more! Suffice it say, I will lovingly maintain her litter box until I die.
Other than that minor psychodrama (the screaming, the tears, the dark stains on the carpet), we still have that baby thing looming, and then there’s Em bottoming out from the Adriamycin round. As expected, her blood numbers are low on Monday. Her platelets (227K) and hemoglobin (8.5) are both significantly above transfusion level, so we aren’t under that particular gun. But her white blood count is a meager 1.2K (way below normal) and her absolute neutrophil count is only 156 – way below the threshold for neutropenia. Emily is in great danger of contracting a serious infection that could kill her.
What we don’t know on Monday is whether Emily’s bottomed out or not. Her energy level seems strong (good hemoglobin number) and her complexion is pink (good platelets). So this Adriamycin round is like the last – pretty much limited to a white count depression. This makes us feel fairly good because Adriamycin engenders enough fear concerning her heart. Seeing Em muscle her way through the round is a great relief. Any serious backlash during the round itself would be so scary, suggesting immediate damage to her heart, and from there it’s just a skip and a jump to appearing on local TV and begging for a donated organ. The docs say that’s highly improbable, and yet you see the relief on their faces when they hear the dose goes well. We are playing with “cardiotoxic” fire, and we’re injecting it right into her heart. How messed up is that?
Emily has kept her hair this round – much to our amazement. The old pattern was that she grew a fuzzy cap of hair through the Actinomycin-Vincristine rounds, only to lose it again following the Adriamycin. Now the exact reverse is occurring, in line with Vonne’s opinion that it’s been the Vincristine all along. This is another example of how the past is such an accurate guide for the future.
Speaking to my brother Ted on the phone brings some thoughts to mind: We are a lot calmer now that we’ve worked our way through the radiation and the initial 13-week chemo induction phase. That whole scene last year had a Bataan Death March quality to it: Em getting weaker and weaker, doses coming faster and faster, and every Lombardi trip a nail-biter concerning possible transfusions. Everything is up in the air every time we go in to the clinic, and Vonne has to take Emily in three times a week. New fears seem to come out of nowhere. Every bit of information feels like a blindsiding.
For example, in November when Em’s blood numbers are super-depressed week after week, the docs decide on a bone marrow tap. It’s a very unpleasant experience I once endured as an adolescent – the very thought still makes me wince. Now, my first response when I hear the news is, “Didn’t we do a bone scan last July to make sure the Wilms’ hadn’t spread into her skeleton?” Well, turns out the bone scan is only for the bone and not the marrow, which is sort of like being told after the tornado destroys your house, that your insurance only kicks in if your house is actually picked up and dumped into an alternative fantasy world populated by small, pituitary-challenged people with squeaky voices. Better yet, it reminds me of Billy Crystal’s "Miracle Max" character in The Princess Bride:
Aha, so you’re an expert now? Well, it just so happens that your daughter was only soooort of tested for cancer in her bones!
So boom! My Monday morning is no longer just a quick blood draw and then off to work. Lucky me! Today turns out to include a surprise brush with the Grim Reaper. Turns out they get to dope her up again. Turns out I get to hold her down again when – regardless of medication – she feels that large-bore needle going into her bone. But then again, it turns out Nurse Mary Alice gets the marrow on the first try, which is not easy.
Em sleeps on the way home. I sit alone in my office in the dark waiting for the phone call. Vonne spends the afternoon holding Em in her arms, wondering if this time the bullet is actually in the firing chamber: We’re terribly sorry, Mrs. Barnett, but remember that we said there were no guarantees in any of this. And then the phone rings and it’s okay, not only is there no cancer evident in the marrow, but it’s full of signs of immune system recovery. The radiation’s long shadow is dissipating. We live to fight another week . . . when they just so happen to find evidence of trauma in her lungs, suggesting the onset of long-term structural damage from the radiation therapy.
Well! It just so happens that she’ll only soooort of breathe in the future!
Expected? Yes.
Bad sign? Maybe.
The usual handholding: “But don’t worry; the CAT Scan next week will clear this up – some.”
Unless they find something other new thing to worry about, which they always do, which then sort of gets solved the following week, and so on and so on. Meanwhile, I’m talking with the doctor in the clinic when Em collapses to the floor, begging simultaneously to be left alone and taken home: “Go away Daddy! Go away! Dada! Pick me up! Take me to the car!” I feel like screaming when a nurse grabs my arm, says something nice, and the impulse passes. After all, we’re in public, surrounded by people living with, and dying from, cancer. What makes our case so special? So I collect my dignity and my daughter, and we quietly leave.
Yes, those thirteen weeks were like a fog – one long series of great unknowns and shock traumas. You kept getting the feeling that you weren’t taking in the information fast enough:
Me: Did I miss something or didn’t we perform a test like that in the hospital?
Them: No, you’re correct Mr. Barnett, but it just so happens that we only soooort of performed a test like that!
It’s like that nightmare where you’re trying to exit the long tunnel and all sorts of monsters keep springing out at you from the darkness as you move along – the tunnel is reverse-zooming to an ever-increasing distance.
Now, of course, everything is different. We have some perspective. We have the rhythm of the rounds, around which all of life is measured and arranged. We handle far more complexity in our daily lives than we ever thought possible. We’re more adept at staying on top of the data, the issues – the next roadblock. We negotiate everything possible with the nurses who really run Emily’s chemo (you merely glad-hand and chat up the doctors so long as things move along). We think more like informed customers as opposed to basket-case beneficiaries. We’re far more in control now – as hopelessly brave and stupid as that statement sounds.
We did indeed put a lot of faith in the doctors during those first few days and months. Vonne and I remain eternally grateful that we linked up with Dr. Javedan for the very first time last July. His many years of practice translated into connections galore, meaning we got the best care possible – as fast as possible. We’ve got doctors whose grad students describe them in almost mystical terms as people of tremendous caring, great insight, and immense devotion to their craft. The Lombardi nurses are equally impressive. All go out of their way to do whatever they can to make this easier for Em, our family, and anyone else who comes into our orbit. No detail is too small for them – no fear too trivial. Nothing seems more precious than our child. They are all very good people. Both doctors and nurses – with a few stunning exceptions – treat us with great respect and care throughout this experience, right down to providing Emily’s birthday cake at a clinic visit last December.
This new perspective on the chemo round is life changing, but the round is the indivisible unit by which all time and activity are measured. Last week I’m speaking with one of our priests at St. Andrew’s, and I’m shocked to realize I’m describing events from January as though they happened yesterday. Yet it seems like only yesterday – or a thousand yesterdays. I mean, the January round is really the February nightmares, which then become the Nona Vonne visit and segue right into the March round, which, of course, segues right into the baby’s birth, the April round, the baptism, the June round, and so on. Life is one never-ending montage, and we desperately need a commercial break.
This year-and-a-half chemo protocol is such a strange movement of time – this bubble of experience which moves along at an excruciatingly slow pace across some cosmic timeline, but within which you race about till you drop. It reminds me of the Star Trek – Deep Space Nine premier when the crew encounter this race of people who exist in another space dimension where time has no linear meaning – no past and no future, only a now that encompasses all. You have that feeling of existing simultaneously across a mosaic of pastpresentfuture: the seconds clicking on the clock as you await that day’s diagnostic verdict; the blurring rush of lights as you speed along through the night toward the emergency platelets transfusion; the enveloping euphoria of the fabled cure date; that still fresh conversation when the surgeon says the kidney must come out; the brutalizing totality of 65 weeks of systematically poisoning your own child; the queer starkness of her bald head against a silk pillow case on Christmas Eve; your wife crying softly in bed; you pacing in a darkened living room explaining it all to no one in particular at 3am.
There is real beauty in all this pathos.
They all exist together in your mind – day-in and night-out. In some ways it feels like an alternative reality: think of the character "Lazarus" in the classic Star Trek episode, "The Alternative Factor." Like Lazarus, this poor space traveler who accidentally stumbles upon the gateway to a polar-opposite universe, and who – once exposed to that alternative reality – is forever being yanked between them with no rhyme or reason, you go through your day with this vague fear that at any second you’ll be drawn involuntarily into this murky world of fear, this alternative time in which you constantly relive or prelive the totality of the cancer experience. And it all seems so real, from top to bottom, across all 360 degrees – and surprisingly tactile in sensation (especially the smells).
In some ways, it feels like a form of madness. You wink out, travel to that place, and then return – in the blink of an eye (another classic Trek episode). Someone in the room notices the blank look on your face (“What’s wrong?”), and you, having no real choice in the matter, simple proceed along whatever timeline seems most real for the moment.
You finish your sentence, or pull the muffins out of the oven, or deal with that rude customer, or resume sanding the mantelpiece, or feed the cat. Then flash! You lapse back into this other world – this ball of non-time – and you duke it out for a bit with your fears until your brain locks up, you realize you’ve been holding your breath, or the stoplight turns green, and then – once again – you move forward wondering, Is it really the end of the month already?
Of course, if you’re Vonne, the whole process gets catapulted out of orbit because – above and beyond all that – you’re pregnant. Inside you there’s a very real alternative reality, one that has its own ways of distorting your perceptions of daily life by flooding you with hormones, depriving you of sleep (best form of torture known to man), and subjecting you to a host of painful annoyances.
That all probably sounds scarier than it really is. Vonne and I like to talk about such things to get them into the open, making sure both of us are feeling the same things, using the same coping mechanisms, connecting with the same symbols of normality as we’re flooded with abnormal thoughts (odd fears, intense anxieties, negative opinions, very black humor, and, sometimes, uncontrollable anger – not that I truly intended to kill Rosa that night). There is that instinct to hide from others, sensing your bizarreness. But so long as you get it out quickly – almost getting out of its way quickly – it feels more normal than you’d think. No past experience provides guidance, since these things only make sense in the here and now. It’s like the way lightning consumes your senses entirely and then instantly disappears – leaving behind the psychic boom.
Of course, there’s always the fear of being honest with people about such things – even here. Family’s first suggestion is always counseling. Counselor’s first suggestion is family – as in, “Have you shared these thoughts with family members?” Well, your family is certainly cheaper than a counselor. Better than that, tell your counselor all your problems and you get a bill. E-mail your family and maybe you get a night out on the town courtesy of Grandma! Dad learns fast the benefits of new technologies! Have we told anyone how depressed we are about our crappy old car? I mean, cry-in-our-beer, banging-on-the-table, will-no-one-rid-me-of-this-Honda depressed?
Or perhaps I overplay my hand.
Then again, it probably gets dull listening to this stuff week after week. It gets dull for us too, like the soap opera that’s gone to the well too many times on amnesia.
Will Emily Kane live? Will Vonne’s baby be okay? Will Tom kill Rosa?
Sometimes we think what a quiet year this should have been. This all seems excessively melodramatic much of the time, until you have one of those chilling discussions with the oncologists and you go from worrying about Emily going to somebody’s birthday party to Emily going away for good – just like that. It’s like the torturer who lulls you with random acts of kindness and then slaps you hard right out of the blue – that instantly sobering blow. Vonne and I are getting good at recognizing that post-slap look in each other’s face.
What really works through all this is keeping your eyes on the prize. Like the spinning ballerina whose head doesn’t simply twirl but whip-snaps to attention through each rotation as she instantaneously re-focuses her gaze on some distant point in the theater to keep her balance amidst all the motion, we too constantly refocus on the key points of keeping Emily alive, staying together as a family, and steeling our nerves for the next crisis. That’s not to say that we don’t struggle, or that we don’t fail a thousand times each day. But all in all, we think we’ve done quite well. We feel strong despite our great vulnerability. We’re not going anywhere. If they want to come and get us, they’ll have to break down the front door and take some losses before we’ll never surrender.
Flash!
Then again, maybe tonight we’ll just watch a video and eat a frozen Tombstone pizza.
Executioner: Rosa, now that you’ve been caught peeing on the carpet again, what would you like on your tombstone?
Rosa: A mouse and some mozzarella would be nice.
Actually, Rosa has gone the "square and boxy" (indoor-cat version of the "straight and narrow") ever since I returned her litter box to the basement bathroom. I even built a wooden screen for more privacy. Nothing’s too good for that darn cat!
Em’s progress on taking showers is really great. She used to be so scared in the beginning, something I know well as I was afraid of showers until I was 25 or so (the close quarters, the isolation, Anthony Perkins in drag perched on the toilet seat). Now Em stands so brave and tall and insists on doing most, if not all, of the washing herself. She carefully cleans around her catheter site with the special soap, obviating much of the uncomfortable scrubbing with alcohol preps later on – smart kid, she.
All sorts of last minute jitters as the baby date nears: the little one’s arrival crams extra fears into a head already stuffed with so many bad ones recently confirmed, and yet, there’s so much promise too – not that we’d trade Em-Cat for anything. Knowing everything in advance on her wouldn’t change a thing in our minds – much less our hearts. She’s always represented to both Vonne and I the most amazing union of our separate personalities, not to mention our physical features to a wonderfully spooky degree. Emily remains a far better expression of our love than either of us could have ever hoped for. She makes us believe in a lot of things.
Speaking of believing in a lot of things: church has been a real godsend for us. No really! While often a teary and draining experience (we’ve gone separately so someone is always home with Em), we always feel rejuvenated. That sense of calm and directed contemplation in the presence of God gives one the feeling of more control. For example, it gives you the confidence to – flash! – go over to that alternative reality and experience some of those scary notions on a more even footing – your teddy bear of religious beliefs firmly gripped. It also feels good to hear Emily’s name offered up by the reader as deserving of special prayers, in effect validating your own personal request for God’s help. In all, it’s a very centering experience. Wrapped up in your own spiritualism, you stand far from the maddening crowd and yet feel its supportive strength. You are unalone.
Such efforts are constantly necessary. You’re constantly bombarded by these strange thoughts and either you deal with them directly or the day is shot. If you’re Vonne, you call your husband or your mom, or you confide in your homecare nurse, or your cat (Rosa, the sphinx of counselors). If you’re me, you call you wife more times a day than you care to remember, or you write these thoughts down as soon as they assault you. Get them out – immediately. Better yet, give them to your friends and family and let them stay up at night thinking about them. Yea! Then you go happily on your way: winning new clients, saving the world’s rain forests, training for the New York City marathon (only 1,286 miles to go!). God it can all feel so good sometimes! Enjoy!
Cataloguing some recent photos this morning, I accidentally flip back in time and come across photos of Em just before the diagnosis. It’s a real shock: the thin, golden-skinned tyke is shorts and a tank top, with her shoulder-length, corn-silk yellow hair. I feel I’m looking at a dead person. The breath goes right out of me the same way the tears rush to Vonne’s eyes when she remembers Emily’s birth. In some ways, it feels like that golden period was all a cruel hoax. That Emily is long gone – never to return. The new Emily is such a different creature – if hauntingly familiar. The sense of disconnect is unreal, being as much about us as her.
We know that all parents look back at past points in their children’s lives and wonder, “Were they ever that small? That young? That innocent?”
Yes, she was. But that was the old Emily: the pre-bulge-in-the-stomach Emily, the pre-diagnosis Emily, the pre-cancer Emily, the pre-surgeries Emily, the pre-nephroblastomatosis Emily, the pre-chest-catheter Emily, the pre-radiation Emily, the pre-chemotherapy Emily, the pre-side-effects Emily, the pre-long-term-effects Emily, the pre-genetic-case-study Emily, the pre-multiple-transfusions Emily, the pre-long-term-survivor Emily. You know, she’s the one with the golden hair and two kidneys, the one who sleeps through the night, the one who’s almost potty trained, the one who’s like everybody else’s kid, the one for whom everything seems possible . . . that Emily . . . that Scooby Cat . . . that Em-Cat . . . that Hon’ Cat.
Captured right there in living color, she’s a ghost from our very own past. There she is! That bald kid sitting over there . . . that determined girl pulling away from the pack at the two-and-a-half mile mark in the race . . . that intelligent woman whose articulate response stuns everyone at the meeting . . . that mother of our grandchildren – all thirty-two pounds of her.
She looked good. I hope she can come visit sometime.
You know, the last time I saw that girl was last summer in Chicago’s O’Hare Airport, the day after I’d discovered the lump. We’re stuck there, in this backwater waiting area. Since the area’s closed off and I can keep my eyes on her, I let Em run around. Everyone’s stuck there like us, bored to tears, waiting for the plane. So Em starts making the rounds in this cute blue-jean dress – dancing, singing, and laughing. She’s stopping in front of people and performing especially for them, asking and answering questions, jumping on and off the benches. She’s the center of attention and she knows it, milking it for all it’s worth.
Remembering her back then is like staring into one of those pristine black-and-white photos they show in documentaries: the famous person as a child, or on her wedding day, or just before the big event. These subjects always look so pure when viewed backward through time, before whatever subsequent transformation made them notable. You feel yourself wondering what they were really like. You want to go back into the picture and meet them then. And indeed, we’d love to go back and introduce ourselves to that golden girl. In fact, I’d settle for coming out of the shower and discovering that last season’s episodes were merely a dream. I wouldn’t care how many viewers we lost.
Vonne sees the OB again today (23 Mar). Nothing significant to report. They make her take a non-stress test – another stupid diagnostic in search of a function. Their diagnosis? “The baby seems kind of quiet this morning.” Vonne thanks them profusely for this out-of-the-blue information and the opportunity to stare at the ceiling for half an hour. Anyway, I feel it’ll happen this weekend.
Later that day we learn from Em’s blood draw that she’s on the rebound. Everything is up: 9.0 hemoglobin, 400K platelets, 1.8 white count, and 396 absolute neutrophil count – the last one rising as a percentage of the white count (which means her immune system is reconstituting itself).
