Guilt. The listing title of this post should begin with guilt. I have not updated Lauren’s status for a good long while. Where did I leave us last? Ah, yes. The Kelly Clarkson “Stronger” video that went viral. We were in-patient and Lauren was fighting a nasty infection in her surgical site. How could I leave you, kind readers, in the wasteland that is Infectious Disease (ID)?
Short version wrap-up for my friends with ADD: The leg infection cleared, finally. Lauren finished her final round of chemo. We packed up and said “Adios!” to our friends at the Ronald McDonald House (Can we get fries with a year of reduced-cost, medical crisis housing? And when I said, “Supersize me!” last July, I had no idea we’d be staying a year.) We drove to Vancouver/Portland area. A smidgen of summer vacation. Sleep. Escapist reading (vampire porn and light YA novels). More sleep. A surprise visit from my father. My continued failure as familial peacemaker. A much needed mini-trip to Las Vegas and Palm Springs, courtesy of my sister Laurel. Back to Seattle, stayed with Todd’s brother and his family. Surgery #6 to remove screws in the growth plate of L’s knee. Lauren’s 12th birthday, celebrated in the hospital. A wringing of hands and wrangling of paperwork between two vets and the Department of Agriculture to get our dog back to the State of Hawaii. A long flight home. The waiting crowd of friends and family at the Hilo airport. Upon arrival, the discovery that my cat was missing, having been housed for a year at a no-kill shelter, escaping said shelter, and wandering into the nearby forest. Unpacking suitcases and boxes. Cleaning. More cleaning. School shopping. More unpacking. Cleaning. Sorting. Purging. A reunion with my hot tub and hot hub. First day back to school. Another staph infection. Surprising the primary care pediatrician with our ready supply of antibiotics. The year-long overdue library book. A 504 plan. And the “new normal.”
Rounding up for the rest: This is a long post, flavored with a heavy syrup of doubt and discontent. Press on, but reader beware.
Infections and the like. It’s hard to describe the past few months. Perhaps that’s one of the reasons I’ve procrastinated in updating CaringBridge… to the point of CB guilt. Another exposure to chickenpox, more isolation, and another bad infection in Lauren’s surgical site. How can I describe to you the desperation to be rid of the tiny microbes making infection in my daughter’s body? Little bastards. My hope that every bag of badass chemicals will eradicate the offenders, send them straight to the chilly heart of Dante’s Inferno. There is a strange, false sense of hope in living at a hospital. Because that’s what we did there: we lived. Looking around, I see sophisticated machinery, sterile equipment, and efficient professionals—surgical scrubs; booties on feet and caps on heads; white coats with monogrammed names on pockets; clipboards in hand; fat charts with scribbled notes along margins; doctors, residents, internists, and nurses pushing COWs (computers on wheels) from room to room, patient to patient—professions with initials before and after their names to assure me of medical training. I want to believe that these added components, the superstructure and staff of a “hospital,” ensure a certain measure of safety, that nothing bad can happen within the four walls of our sanitized hospital room. And while part of life is death, I don’t linger there. Can’t bear that bit of truth even as a remote possibility. What I’m foolishly grasping for is scientific certainty with a happy ending. Modern Science prevails! In actuality, what I desire is medical fiction with strong characters, a clear plot, challenges overcome, and a satisfying conclusion.
Lauren and I are midway through a DVD episode of “Veronica Mars.” A modern day Nancy Drew, she always solves the mystery. More happy endings. Knock, knock. Not from the TV. Dr. Bell’s kind face and soft British accent push through the privacy curtain, interrupting us. He has news, or so I hope. One of the ID docs on our “team,” it is his job to splash cold water statements in my blind hope face: “Sorry, nothing yet.” We’ve been here for days and the fatigue shows. “Sometimes it’s a guessing game with these kinds of infections,” he continues. “We draw blood, culture it, and hope to pinpoint the trouble-making microbe or bacteria. But that doesn’t always happen; sometimes we don’t ever discover the culprit or culprits. We simply administer medication and see what works. Keep up with that. Tweak things until the infection subsides. Hope the bug doesn’t return.” Conversations like this do little to fill me with confidence.
I fight with myself. I desire simultaneously to escape reality and turn to face it head on. What can I do but be present, ask question, and take notes. I take myself out of the equation and zero in on details, my own observations. Later I will attempt to make sense of it all for those seeking updates about Lauren.
Chronic illness with extended stays in a hospital is isolating. The task I’ve set myself is to describe scenes of our experiences in an attempt to draw friends and family near. But how can I accurately portray such heat, as it emanates from her body during a fever? What about finding the right shade and hue for her flushed cheeks? Or the acrid, metallic ting in the air when she sweats during medication-induced sleep? These are pieces of a remembering puzzle that I don’t want to forget or intentionally misplace. These raw memories, images that flash against the black of my closed eyes at night, are important pieces of our lived experience this last year. And then when is detail too much? Maybe others out there want medical fiction too… or just the Cliff’s Notes edition. Lauren was diagnosed with a rare and aggressive cancer. She moved from her home in Hawaii to Washington State for treatment. She spent a year at Seattle Children’s Hospital and was treated with surgery and intensive chemotherapy. At the end of that time, her doctor declared her “NED” (No Evidence of Disease). She flew back to Hawaii and smiled at her homecoming reception. She lives and has her leg. The end.
But it’s so much more than that. There are details that will stay buried, unless Lauren decides to share them. There are details to painful to share presently. Life on fire. Blazing and bright, certain scenes are still too hard to view. We squint our eyes against the glare, step back from the heat. At the ready for snapping twigs, popping embers, and sizzling sap. Perhaps the intensity of some details will settle eventually, like dying cinders in a campfire. Perhaps, but not today.
I remember my first taste of Scotch. Tipping back the glass of amber liquid, how my lips burned! The fumes brought tears to my eyes and liquid fire seemed to evaporate halfway down my throat. I swallowed reflexively, doubting that anything went down. I felt I might gag. At the time, all I could capture was the shock, the intensity, the physical descriptions. Cancer is like that. Straight up with no chaser.
The infection eventually cleared up. Dr. Bell and his colleagues beat it back with a potent six week cocktail of broad-spectrum antibiotics and antifungals. They were unable in the end to isolate any one responsible microbe or bacteria. The docs prescribed top-shelf medications and hoped for the best. Thank goodness it worked, Lauren’s “Hail Mary” Happy Hour.
End of chemotherapy: Lauren’s last chemo was uneventful. By coincidence or fate, we found ourselves in the same room of Lauren’s first in-patient chemo. We recognized a squiggled pattern on the ceiling tiles, dried evidence of Silly String. Lauren and I took this as an outward sign of good fortune; a celebration was held at some point by someone in this side of the shared room. We decided to have our own party. Late in the evening of May 14th, Nurse Todd logged doses into the computer as Nurse Leesa hung the LAST bag of chemo. Name band check. Lauren recited her name, spelling out her first and last name, along with her birthdate and medical record number. Karen, the hospital’s social worker assigned to bone tumor patients, stopped by to offer congrats and give hugs all around. Todd (ours, not the nurse), his brother Kris, Lauren, and I made a ruckus, blew on party favors, and shot our own Silly String around the room. Later, the graveyard nurses dropped by for goodbye wishes. Nurse Beefcake (Ross) and Nurse Sugar Buns (Aaron), two of Lauren’s favorites, posed for pictures with her. How we will miss the kind staff at Seattle Children’s. Not the beeping machines or round-the-clock vitals or necessary but nausea-inducing medications. We will miss the people.
Goodbye RonDon: After a year in Seattle, we packed up and left the Ronald McDonald House. How strange to say goodbye to this place we have called “home.” There’s no place like… How sad to say goodbye to good friends we have made along the way. How exciting and yet terrifying to be out on our own, away from the safety net of managed hospital housing care. We left with far more than what we brought. Gifts, mementos, medical supplies and equipment. Todd shipped two full pallets back to Hawaii, along with the car we originally shipped over. After our escape on June 7th (Todd’s birthday), we drove to the Vancouver/Portland area to spend a mini summer break with my sisters and their families. I loaded up on books at the Dyment lending library (Thanks, Lo!), mostly light plot vampire porn and young adult novels. Decompression reading.
Reading fluff becomes a task I can accomplish, something tangible I can point to: 127 pages read. A popular series. Three books, five, twelve. Reading fluff keeps me from thinking about the larger, looming list of things To Do.
My sisters are still fighting and I have no energy for peacemaking, especially when the final blowup had to do with our family situation. What I can’t afford is to have vital energy sucked from my body when I’ve done what I can to safeguard it. One sister lives in Vancouver, Washington. Another lives in Portland, Oregon. Two sisters, separated by a rift of fast-moving Columbia River. To travel from one to the other, one must cross bridge after bridge, fighting traffic both directions. I say "one," but of course I really mean “we.” Todd, the kids, and I cross bridge after bridge after steel-cabled, plunging heights bridge. My kids are closer in age to their cousins in Vancouver, so the request to stay with that sister makes the other feel slighted; an imposed sense of fairness demands that our time should be split equally between the two. Should. I hate that modal verb! As an auxiliary verb, is it helping? Really? The word “should” is used to express condition, to indicate duty, propriety, or practicality. It’s a cop out word of etiquette and expediency, much softer than “must,” which indicates obligation. While the rational bit of my brain sees this familial contract in black and white, the black is not indelible ink and the situation not clearly white. The pressure to do and act right as not to offend is not black and white at all; it’s a mass of muted, layered gray and I sometimes resent the burden it implies.
Vancouver offers more in the way of creature comforts I can’t quite define. Maybe it’s the character of my sisters, what I see at this place in my life. One sister is more intense than the other—questioning and doing. The other sister exudes a spirit of laissez faire. Mountain hike to sweeping vistas or meandering stroll through peaceful glens, I exhaust myself with one and feel a twinge of guilt in the other. I shouldn’t, but I do. (Should again.) I joke about being neutral Switzerland until I’m reminded they conspired with the Nazis. Choose another location. Closer geographically, Canada beckons a “Olly olly oxen free.” Who in their right mind could be pissed with the peaceful, maple leaf-loving Canadians? I move there psychically, knowing Canada has national health in case Lauren relapses.
In the midst of this familial shitstorm, my father comes to visit. To my knowledge the man has not set foot in the Pacific Northwest in 30-some years, since shortly after my parent’s divorce. Not for any of our graduations, nor for weddings. Yet here he is. Battling cancer himself, he has come to visit Lauren as a show of solidarity and because he understands more than we what the past year’s struggle has cost her mentally, physically, and emotionally. This I believe.
It’s good to see my father. He looks… lighter somehow. Open. Relaxed. The visit should not be complicated, but it rapidly becomes so. Where will he stay? How will the time be divided? We see him so infrequently; the visit becomes less about Lauren and more about everyone else. I’m going to leave it at that. Papa returns to Santa Barbara and we slip back to geographic divides. “O Canada! My home and native land!” One sister and her family depart for a trip back east to visit family and pick up a new car. While she is gone, the other sister and I take a trip that has been in the works since before Lauren was diagnosed with cancer: Las Vegas and Palm Springs.
These cities, particularly Las Vegas, blow the top off my bottle of surreal life soda. The lights, vibrancy, and excess in these desert cities is both expected and not. Daytime, we tourist around town or sit by the pool. Hot. Scorching hot. Air and wind that must be the exhalation of Satan. Nighttime, as in other desert communities we’ve visited, is frenetic—a riot of color and sound. I think back to a trip we took with the kids to India. In Rajasthan we discovered a desert alive at night. Too hot during the day, people swarm in the cool of evening—nocturnal animals—for physical and social needs: food, drink, dancing, conversation. Here I felt another shift in my body clock, a fitting and more natural rhythm for the environment. In Vegas and Palm Springs we look, lounge, and live for a week in accordance with those places. Instead of returning refreshed, I come down with a case of “what next-itis.”
Back to Seattle. Lauren’s sixth surgery. Dr. Chappie removes screws from the growth plate in her knee. The hope is that removing these screws will allow her continued growth. The question is whether or not the bone is stable enough yet. Lauren turns 12 in the hospital, a strange sort of celebration. Nurses in paper hats; a quiet rendition of the Happy Birthday song (as not to disturb our hospital roommate); a vanilla shake instead of cake, Lauren’s tummy is still upset from the anesthesia. We check out and do what’s needed to get back home to Seattle. Our “year abroad” comes to a close.
When the boarding door of the plane opens in Honolulu, moist, tropical air blankets us. My skin drinks it in, feels the elements pushing under its layers: water, air, earth, fire, and spirit. I follow the Department of Agriculture agent at our arrival gate for their airport examination of our dog, Skittles. My friend Jill meets me at the DOA office with flower lei. It’s nice to see a friendly face, get a flower-scented hug. Our dog’s paperwork is in order, so after a short “local kine” delay, Skittles and I are released and return to join the rest of the family at the inter-island terminal. A 45-minute flight and we’re in Hilo, a year a ten day after our original departure. A lovely crowd of friends and family awaits us. Smiles, tears, pictures, banners, flower lei. Then home.
What I can say about opening the front door of our house is that it didn’t feel like our house. Odd, after fantasizing about our return. Unexpected, strange things: the furniture was rearranged; items I didn’t recognize; foreign smells. The dogs were barking at us, the bark that signals a stranger’s approach. Our dogs were barking at us, I realized. In my bedroom, small items shifted but mostly the same. Minus the items that showed a cat lived here too. My cat. Gone. Her name was FC (short for Feral Cat) and she’d been with me from kittenhood, rescued from her short life as a feral kitten. After we left and without my knowledge, kitty was taken to a no-kill shelter, an open air, free-roam place run by someone I know. Apparently she ran off into the forested area behind the shelter and hasn’t been seen since.
I am reminded that no one really liked kitty (as if to lessen the sting), but I did. My mother tells me the story on the way home from the airport: “I need to tell you something… and you’re probably not going to like it.” I feel sad and strangely betrayed. For whom and by whom, I don’t know. For years, the cat lived under the bed, coming out only late at night after the dogs were tucked in and behind closed doors with the kids. FC was antisocial and reclusive, but she was my antisocial, reclusive cat. She’d slink out at night, joining me for TV or curling up at the foot of the bed for a grad school reading: Aristotle, Shakespeare, Pope, Marx, Nietzsche, Foucault, Cixous, Lejeune, and Butler. People who don’t require more than a single name for recognition. Scratch your head reading, where petting a cat helps calm the mind, the kind of reading I have been physically unable to process since Lauren’s diagnosis. In a way, kitty was a furry bridge back to academia. (Ha! I hear some of you laughing. Or perhaps scoffing in disbelief. Insert my own mental image of eyes rolling from readers far and near.) Understand though, my cat was a late night, purring study buddy. After everything our family has been through, it might seem stupid to mourn such a thing, yet she was a part of this place called “home.”
Three clicks on the ruby slippers and a whispered: “There’s no place like home. There’s no place like home.” And there isn’t, is there Dorothy? I am shocked by a hidden truth: nothing has changed and yet everything has. It doesn’t feel like a satisfactory end to the epic journey we’ve been on this past year. (Oh! how I despise that particular metaphor: journey. Like we’ve been on safari to Cancer Land.) My natural rhythm has changed; and although an 8:00 p.m. granny-goes-to-bed-hour finds me drowsy, I’m not sleeping well through the night. Restless dreams plague me, dreams in which I search for something that cannot be found or find something I shouldn’t. I have concrete tasks in these dreams, items to cross off a hellish To Do list, but my concentration is lost. A previously held certainty about which path to take in life tears me to bits. Was it ever the right path? The answer to life’s questions demands my attention as I toss and turn at night, leaving evidence of the struggle by way of loose fitted sheets, pulled free of their cornered moorings.
Just before dawn the air around me sparks with anxiety. Dreams fade. At this time the veil between sleeping and waking is gossamer thin and vulnerable. My soul rips from my body and travels I know not where, leaving the corporeal me an empty, undiscerning shell. If asked any question, my answer would be the same: I don’t know. But questions about my life’s To Do list aren’t light ones, nor is my examiner gentle with his delivery. It’s Alexander Pope, of course, a nagging phantom from a bit of unfinished coursework. AP is not one to beat about the bush: What are you doing with your life right now? For God’s sakes, Piper, what’s your direction? Do you plan to finish the PhD or are the Master’s degrees sufficient? C’mon, woman, think! You say it will leave a hole, feel unfinished. Do you even think you have it in you to finish? Will you stay in Hawaii or move back to the mainland? What are your priorities? Truly. Do you care about your business anymore? Why bother? What does your husband want? What do your children want? Yes, children. You have two, remember? Your mother? The rest of the family? What do YOU want? As my mother’s second husband would have said, “The answers are clear as mud.” Raw dream matter swirls about the empty, echoing cavern of my mind. Calm waters of my mind are turbulent again: searching dreams; cross purposes; trying to catch what eludes me. I dog paddle, tread water through the inquiry with Pope, then drown.
The kids started a new school year just four and a half days after our homecoming, promising (I had hoped) to return us to regularity. A schedule. Normal life, whatever that might be. Not so. Well maybe a little. I shouldn't be so glum.
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Is it good to be home? Yes and no. In some respects, it still doesn’t feel like home. Or I don’t feel right. The peg I was a year ago no longer fits exactly the hole it left. I’m sharper in some places, rounder (much rounder) in others. I’m left with unsettling questions when I’d rather have answers. Shouldn’t I feel solid again? After all, we’re supposed to be DONE, right? Someone please tell me we have closed the chapter on this season of discontent! Where does all of this leave us? Will I swim out of this miasmic sea of doubt and depression? Can’t I just be happy? And this CaringBridge updates its readers about whom? Is it Lauren or me? Strange and almost foreign to think of either of us as truly separate entities after this experience. It’s like a second birth experience: one moment you are two as one, the next separate, but not fully. And as a separate self, how will Lauren respond to this newness of life, her childhood (and body) forever altered? How on earth does anyone survive this experience intact?
Then it comes to me: They don’t. Not really.
(Note to reader: I promise my next post will not be so dismal. Rainbows and unicorns pooping glitter the whole way!)
