Which Way is Home


IMG_2065With each step I move toward the west.  The snow has gathered in the great cracks of the runway and airy snow swirls and races, skimming the surface like little spirits trying to keep up.  My eyes take in the Bridgers as we make our way slowly forward.  Their foothills stepping out of the clouds, reaching their blues and whites out into the valley.  The plane halts to warm the engines and quakes as the might is restrained; it shudders trying to contain the power and I attempt to keep from blinking, soaking in the contours of this face of the land I love so much.  Only the orange and red glow of runway lights to break up the blues and whites and soft brown.  I feel conflicted, not knowing if I should turn away or continue my gaze.  Then we are moving again and I see the far southern slope and know my home lies just beyond it.  There my child sleeps and my husband has returned.  The plane turns and it slips from view.  Then the hurtling forward that would be sheer insanity if it didn’t end in flight.  We are aloft and there the twists and turns of countless creeks and rivers, black against the white fields, their erratic path undeterred by the geometry of man’s life.

Twenty-four thousand feet above the land, the perfect blue of sky and morning sun at my shoulder, toward the west, toward Allistaire, toward a fight for her life that is relentless.  While I was in Bozeman, these past four and half days, her ANC has begun to barely rise.  Its highest point had been 24 and was unknown yesterday because there were blasts in her blood.  Blasts.  I could not believe it and my heart sank and stayed there weighty and slow.  I wanted to return home full of joy from my visit with Solveig.  Full of hope for the days ahead and hope for an open door to transplant.  There are only a few, 5-6%, which equates to only 10-15 cells, but they are there and their true nature is unknown.  It is normal to have 1-2% blasts as we all have some immature cells at any one time, but this is a bit beyond that.  This is nothing compared to the blasts of nearly a month ago that consumed nearly 90% of her blood cells present and was up to almost 9,000 cells at one point, but there they sit.  It could be that as her marrow is, “waking up,” as they say, it is sputtering along and pushing out a bunch of immature cells that are not leukemic.  That is what we so hope for.  Tomorrow at 10am she is scheduled for her bone marrow test, the 30th day of this round of chemo.  Dr. Leary, the current attending doctor, believes she will be ready despite such a low ANC.  I had been told we needed an ANC of 500, but as often seems the case, there is a bit of inconsistency and I am told there is no, “magic number.”  Her white blood cell count rose from 600 on Saturday to 1,600, so Dr. Leary is hopeful she’ll be ready.  She expects we should have preliminary results by the end of the day on Tuesday.  Preliminary results would give us the morphological count of her blasts.  This is the count done under the microscope and must be 5% or less to allow her to move forward to transplant.  Results from the Flow Cytometry test would not likely be back to late the next day, and while they hope for the lowest numbers possible, we will know from the morphology whether or not transplant is the next step.

“She looks really great,” said Dr. Leary on the phone.  “She always looks great, but still has cancer, “ I respond with a bit of cynicism in my voice.  I want to take how she looks on the outside as some sort of comfort and encouragement that this indicates what’s going on in the inside, but I know that I cannot.  On the other hand, I know from the stories of others, that I should and need to take great joy for how well she is doing because it could be ever so much worse.  It is a true gift that our main fight is again the cancer itself and not all of the complications with other organs and systems that could also be present.  I praise God for all of His protection of her sweet little body.  While she continues to have the rhino virus, she has no concerning symptoms from it and the virus levels of the RSV continue to drop.  The nasal wash test from last Thursday night was a cycle time of 35, being 32 previously.  So, she continues to head in the right direction as her lymphocytes increase.

I awoke at 3:45 this morning and as I shut the door to the house, in the dark, I wondered again when I would enter my home.  The past four days have been wonderful.  When my dad told me on Sunday afternoon that he was able to take time off for me to go home to see Solveig, my gut response is that I didn’t want to.  Oh, I so wanted to see Solveig, but I didn’t want to go home.  It felt too taunting, too painful to be so reminded of that world, that life that is so utterly unavailable to me.  These days have been both joy upon joy and squeezing pain.  The look of surprise on Solveig’s face when she turned and saw me standing there in the airport, well, I could not have asked for a greater gift.  She ran and jumped up into my arms and stayed there far longer than I would have guessed.  We sat on the couch and she read me Beatrix Potter’s, “Tom Kitten.”  I delighted to see how much she has progressed with her reading and took in the beauty of her eyes and round cheeks as she turned each page and examined the next picture.  We held hands and had fun, moving from one activity to the next as ideas came to her mind.  Saturday was an especially nice day for the all three of us together.  It began with time at the Cancer Support Community where Solveig is participating in an eight-week kids program and includes a time for parents and caregivers every other week.  Solveig seems to be really enjoying it and has a special affinity for a boy almost her own age whose older sister has been battling a brain tumor for years.  They have lots of fun and discuss things like whether or not you can catch cancer from someone else like you can a cold.  They made clay models of what they think cancer looks like.  It is also an intense and wonderful time for the parents.  It is a strangely lovely experience being in a room with other parents whose lives have been forever gouged by cancer.  I am so thankful Sten has such a place of unique support even as he is away from the hospital most of the time.  We went to lunch at La Tinga, our favorite taco place, then off to the Dinosaur Park for some silly fun in the whipping, wild wind.  We bought some soccer shoes for Solveig who begins her short Bozeman Blitz soccer season with practice today.  We enjoyed some frozen yogurt and a walk along Peet’s Hill that gives a great view of the valley on all sides.  It was just a perfect day with the exception that our beloved Allistaire was missing.

I walked into the still room and turned on the lamp.  I looked long at her big girl bed that she only slept in for a week before we left.  I intended to gather her remaining 3T clothes and to put away all the now too small 2T clothing.  I pulled the chain to the light in her closet and there it sat.  The Trader Joes bag full of snow clothes sat in the same spot that it always did, right where we left it.  I pulled each item out slowly, the snow pants to be put away in the bin and the little lavender mittens.  Her Patagonia capilenes that match Solveig’s are put in the bottom drawer.  I throw away the size 4 diapers that no longer fit.  Earlier in the day I noted that the stack of books, the glass vase and the ceramic planter shaped like a nautilus shell were out-of-place on the top of the piano – evidence of someone’s kindness to come to my house and dust.  The grouping of blue glass on the top of the toilet told the same story.  Someone has been here, doing tasks that are mine to do, but they are not me.  While I am so thankful for the kind help, it is also peculiarly painful to see someone else living out your life that you are cut off from.  The bag sits in the same place.  I think of the tsunami in Japan and feel that Allistaire and I have simply been swept away.  We are gone but our life here remains, or at least the evidence of it.  I think of my ancient art history class and Pompeii, where some disaster struck with such sudden force that everything stood still in time, just the life of the inhabitants sucked away.  These four days have been wonderful and they are intertwined with sharp and dull pain and sorrow heavy.

As Sten and I held hands driving down Frontage Road, driving to the inevitable point where he would turn and go, I wondered when I would return.  I wondered when I would sit in my own car again and drive roads of my homeland.  I wondered what will life be when that day comes again, what will be Allistaire’s reality.  My life feels balanced on a narrow ledge, ever swaying with the winds of blood test after blood test.  I want to feel stability under my feet and I have contemplated how to remove that which causes me to feel ever precarious.  I must subtract how Allistaire is doing if I am to not feel ever buffeted, but to remove Allistaire feels like being asked to remove a vital organ and live.  I don’t know how to do it and I don’t want to.  I know that I am rooted in Christ and so ultimately my foundation is sure, but oh how the wind blows relentlessly, I am being bowed under its force.  I will be forever marked by this journey.

Below me lie thousands upon thousands of snowy peaks, only their upper edges lit up white by the rising sun and I am reminded.  I am reminded of another flight I took as a teenager to go see my grandmother in Georgia.  On that day the plane took off from Seattle in thick clouds.  I mourned the lack of view, having hoped to see the splendor of the Cascades.  But then there it was, the vast perfect blue of the clear sky and snowy monoliths rising up above the clouds.  It was the first time I remember being so struck by the significance of perspective, of vantage point.  Truth and reality are not only that which we can see, which we can perceive with our senses.  There are also truths and realities, just as mighty and vast, and resplendent that we cannot see, blocked from our view by time or space, by dimension.  It is easy; it is natural to look with my eyes and to take in only this view.  But I purpose to lift my eyes, to take in the view with my spirit, with the eyes of my heart and to see the reality of these days all wrapped up and contained in a greater, vaster expanse of truth, of realness.  The clouds settle thick in the low valleys, blocking the sun that stretches out across the land.  As the plane descends, I head back into this valley we are forced to walk.  But I will my eyes up.  Every day and every hour I ask you Father God, Master of Heaven and Earth, you Ancient of Days, give me eyes to see You!  Lift up my eyes!  “Why so downcast oh my soul?  Put your hope in God!”IMG_2088 IMG_2082 IMG_2080 IMG_2079 IMG_2078 IMG_2069 IMG_2059

3 responses »

  1. I am so thankful you had time with Solveig. What a sweet blessing. I continue to pray for you and your sweet family Jai.

  2. Jai, I’m so glad for your special time with Sten and Solveig, and I’m praying for you as you enter back into your ministry to Allistaire in Seattle. Love, Betty

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