Perhaps what is the most strange is how very normal this all is. It is like the song on the piano you have played for years – your fingers know what to do without the necessity of thought. Your body moves in a constant sway from years of rocking babies. Circles round and round. Meal time has its own routines. Take a bite. Take a sip. How many millilitres is this? Take a bite. Take a sip. Threats to turn off the movie. Hang the chemo wearing the blue garb. A second nurse checks. End of Infusion. Flush. End of Infusion. Alarming pump demanding attention. Next chemo. Every day a bath with the protection of parafilm, press-and-seal, blue tape and finish up with the warmed Chlorhexidine wipes. Another lap around the Unit on the bike, peering into windowed doors trying to guess at the lives within. Blood counts fall. Transfusions anticipated. Round and round the circles go, small and wide. And the faces come, one after the other, familiar, loved, with eyes slanted down in sorrow and smile on lips at the sight of a friend. Out the window I see my old dorm from college. The six cypress trees stand as they always have, clustered like tall girls, ever silhouetted against sunset. Like a strange attractor in chaos theory, my life keeps circling back to this place.
We’ve settled into a most lovely room, one of the best I’m told, 218. The view stretches wide out to the south beyond a sea of trees clinging to fall, to the lake and off in the clouds, that mysterious looming form of Mt. Rainier, cloaked behind clouds. I already know the drawers and what fits where. I ask for more of the barf buckets to organize socks, underwear, snacks and miscellaneous utensils, straws and cups. The little green pot of fake orange flowers sits on the table, reminding us of a world outside that bears such dangers as fungus and bacteria and the passing beauty of plant life, ever dying and being reborn.
The hand of the Lord is evident over and over in His very sweet and tender provision. Here, Jai, here is an activity plan for Allistaire. She may never get out of contact isolation because of VRE, but you may escort her through the halls of the Unit as you don the pale yellow gown and blue gloves. Just don’t lick the walls. Check. Christy, the Unit manager, joins me on one of our walks and asks if there is anything they can do to help me in our stay. She jots down a few notes of instructions for nurses so I don’t have to repeat the same thing every morning and nap time. We prioritize clustering care primarily at night. I sleep well, getting a few three plus hour spans. At 2am, the nurse and CNA coordinate their actions in the fastest bed change the world has known. It really was Youtube worthy. The massive hydration that comes with chemo got the best of her. She thinks she was just sweaty and won’t be convinced she wet the bed. They pound out vitals, eye drops, meds, check the dressing, measure the urine and labs.
“Life doesn’t have to be perfect to be wonderful,” so says my toiletries bag. It preaches to me every morning.
I have been cut off from the life we had, the life we tentatively, tenderly hoped would last. I am cut off from common and desirable achievements. I am forced into a position of need. I must ask for my food to be heated. I ask for milk, for cups, for wipes, for towels. I ask for clarification on the difference between the MLL (Multi Lineage Leukemia) gene rearrangement and Mixed Lineage Leukemia. I am ever asking, holding out my hands in need. I can only ask for daily blood counts and watch as something outside myself fights the beast that threatens to tear away my child’s life. I can only watch the strange dark blue of ocean drip down and flow through the tubing into her veins.
My heart is not proud, Lord,
my eyes are not haughty;
I do not concern myself with great matters
or things too wonderful for me.
But I have calmed and quieted myself,
I am like a weaned child with its mother;
like a weaned child I am content.
Israel, put your hope in the Lord
both now and forevermore. (Psalm 131)
It is not within my grip to decide her course. That is the Lord’s burden to carry. As for me, I am entrusted with kisses on the forehead, light sleep that attends to small moans and cries, to encouraging another bite, the tracking of fluid intake, attending to the course of the Chlorhexidine wipe as it circles her flesh to fight invaders, holding lines as we drive the IV pole to the bathroom, making sure Doggie doesn’t fall on the floor, clean clothes, brushed hair and teeth, encouragement to submit to the nurse with the eye drops, saying no to another movie and suggesting an activity, reading books, ears attentive to her words, stories and songs, standing in the circle of doctors, being alert to all her steps forward in this tedious process of conquering this ravaging disease that is clamping out the life of little Howie down the hall. So very little is mine, but I am determined to carry this responsibility with great care and honor that I should be asked to walk these days with her.
And above it all, on every side and saturating every act, I choose to worship. The Lord set the Israelites free from enslavement so that they might worship Him. That is the whole point of freedom. That is life abundant. To know the Lord is to worship Him, to blush and bow the head at His unspeakable beauty, to stretch back the throat and raise hands to the sky, to feel your whole self, every cell pressed forward in adoration of a God who defies our finite logic. He has enslaved me to this place and this disease that I might worship Him. He has constrained me and cut me off so that I can stand from a different vantage point, so I can witness Him from another angle.
Down the road from our house there is a sign that comes into view as you round the corner. It is a historical marker that tells of Lewis and Clark coming through this very place on their journey to explore the west, to report back about this land so unknown to those far off in the East. They told of mountains of such scale that they defied comprehension. Likewise, Thomas Moran provided the first glimpses of the colors and landscapes of Yellowstone which seemed only possible in fiction. I am certainly not the first to enter this land in which I now dwell, but I feel compelled to report back, to describe the colors of this place. To be “a witness,” to “testify,” conjures up highly undesirable connotations in my Christian experience. They are words from which I have always fled as they raise images of door to door salesmen. But I can’t help myself. I cannot keep my mouth shut, I am compelled to testify. I am compelled to lend my voice as a witness. The colors of dark, of black, red and grey cut and burn. The smells sear into my memory. But so too are there flashes of translucent purple, liquid honey yellow, tender bright new green and deep, deep blues of refreshing. This is my frontier. This is my land for exploring, of gasping terrors and vistas that dazzle so utterly as to render silence and gaping mouth.
There is so very little to put my hand to. But I can do this – I can keep my eyes wide, my ears alert, my heart open, throat vulnerable, palms outstretched. I can go on asking and asking. I can be in need and delight as filling comes. I can open my mouth and speak. I can cry out – “Father, Father come back, oh don’t tarry, oh don’t hold back, do you see what horrors happen here? When will you return and bring healing. When at long last will this suffering cease? Don’t tarry, don’t delay. Mercy, mercy Lord. I call for your mercy. I boldly enter the throne room of grace and in the name of my savior Christ Jesus I call you Oh Living God of the Universe, oh You beginning and end, You alpha and omega, I am calling for You to be faithful to Your name! And with smile that my flesh can’t contain, I can with faltering voice and lacking eloquence, declare the beauty of a good God whose good explodes that word in infinite dimensions and proportions because He simply will not be constrained by me and my little ideas and understanding. I will walk through every day and every circle small and circle wide and ask that He show me His face, that He hold me up that I might see Him from valleys low and rock faces high and sweeping. I want to see you Father in storm, in quiet clear dawn, in approaching evening, in forest glade and in desolate wilderness. I have witnessed the Living God, the mysterious God who lacerates and binds up. I choose to worship. And this is worship: I choose each day to apply my heart, hand and mind to the work you have given me – to love Allistaire and to love every nurse, doctor, CNA, Unit Coordinator, Environmental Services worker, Starbucks employee and person that I pass in these halls with a love I ask The Lord to continue to grow. Make my face radiant Father as I lift my eyes to You!
A couple little details: The pictures showing Allistaire’s lines with blue is the Blue Thunder chemo (officially Mitoxantrone). She’s completed 3 out of 5 days of chemo and is doing well – no throwing up, slightly decreased appetite. Her fatigue has increased which means we’re back on the old schedule of a nice long afternoon nap. All her labs look good. The blasts have not reappeared which is to be expected as her blood counts drop. Today both her platelet count and hematocrit were at about 25. She will get red blood when her hematocrit reaches 20 and platelets when they reach 10. At home she had just finished all of her meds with the exception of Enalapril for her heart, vitamin D and Multi-Vitamins. She continues on these but now also has Fluconazole (anti fungal), Bactrim (antibiotic) and Allopurinol (helps clean out all the cancer cell gunk that spills into the blood during tumor lysis/death of cancer cells). Every four hours she gets eye drops to prevent complications from high-dose Cytarabine. The picture of Allistaire with the other girl is our friend Piper who is now 10. She was diagnosed with AML two weeks after Allistaire back in December 2011. She relapsed in November 2012 and got a bone marrow transplant in February 2013 and is doing well. Lastly, I have included a few old pics just to lend perspective. Note the same pink helmet from first diagnosis and a couple picks with Piper from diagnosis and first relapse. Only four more days until Sten flies in and five before Solveig, JoMarie and Lowell get here. We are excited!!!