Monthly Archives: October 2013

Curve Ball and Splendor



It’s been a while and it has been a full time.  A lot has transpired.  Here it is in brief:

On Thursday, October 3rd, Allistaire was officially discharged from Seattle Cancer Care Alliance by sweet Dr. Delaney and her team.  In sum, all the Day + 80 testing showed that all of Allistaire’s organs are in good working order and that they have determined that she does not have chronic GVHD (at least at this point).  These are two monumentally wonderful things!!!!

The big shocker of the meeting was the idea that a second transplant may not end up being necessary.  In Dr. Delaney’s view, if Allistaire were to continue to remain in remission through the end of the 6 courses of Azacitidine chemo, they would not recommend a transplant, as the risks would not, at that point, outweigh the possibility that she may be in a long-term remission.  She went through each of Allistaire’s bone marrow tests starting with the one just prior to transplant.  In her view, Allistaire probably did not relapse post transplant, but rather simply still had minimal residual disease.  Apparently this is a better scenario.  She said that while the Day + 28 marrow showed zero percent, there were also relatively few cells, which is common at that point post transplant.  Had Allistaire been in remission prior to transplant, the Day 28 marrow would have carried more weight as truly being an accurate zero percent (no one cared to mention this nuance to me back then).  Dr. Delaney described how there is a delicate balance of immune suppression where enough must be given at the time of transplant in order to prevent rejection of the graft (new donor cells) but then, as the donor cells engraft, to also prevent the graft from outright attacking the host (Allistaire).  The new cells need time to get established so you don’t want too much immune suppressants but you must again, protect the host body from assault by the new cells that recognize Allistaire as foreign.

Once Allistaire’s cancer was detectable, there was the increased need to pull back on the immune suppression as much as safely as possible in order to give the donor/graft cells as much ability as possible to identify and destroy the remaining cancer cells.  What Dr. Delaney hopes, and believes is possible, is that we have hit this sweet spot where the transplant wiped out the vast bulk of her disease, and now enough time has passed for the graft to be fully established, give a little chemo to help clear the few remaining cancer cells, pull back on the immune suppressants more and hope to maximize the graft versus leukemia (GVL) phenomenon.  From the beginning (prior to transplant) , it was abundantly clear that Allistaire’s cancer would never be cured by chemotherapy alone.  We were always going to need that mysterious and beautiful GVL.  So it seems that when I was so emphatically told that Allistaire’s only chance of survival was to have another transplant, that was accurate in terms of all previous statistics.  Dr. Delaney made the statement that as far as she knows, Allistaire is the highest risk patient they have ever transplanted.  I assume this means high risk in terms of amount of disease given the enormous amount in the marrow in addition to the fact that it was in eight additional places in her body outside of her marrow.  Allistaire is on a road in which there are no numbers to predict her course – pretty exciting, terrifying and total and utter gift!

So today Allistaire has long been off the immune suppressant Tacrolimus, and is currently tapering her steroid, prednisone.  So far she is doing well with her taper which, assuming she has no GVHD flare, should end on November 2nd.  At that point she would only be receiving 3ml of Prednisone every other day.  I’m not sure how long this would continue before a further tapering. As the taper nears the end, however, the risk of a GVHD flare increases because of the more substantial decrease of the immune suppressing steroids.  She is scheduled to be seen by the Continuing Care Clinic at SCCA one week after the end of her scheduled taper.

As of today, Allistaire has completed four of the seven days of this third round of Azacitidine.  She is handling it extremely well, and now that I am giving her more consistent Zofran for nausea, her tummy seems to be doing better than before.  For some reason, I have foolishly had the mentality that because she is not in the hospital, she does not need as many meds.  This is absurd.  This time around I’ve been giving Zofran about every 8 hours, as they do in the hospital, and she has yet to throw up and so far is still eating rather well.  Her blood counts continue to do spectacularly.

The two looming issues this week has been her heart function and the much-anticipated chimerism tests.  On Tuesday morning, she had a surveillance echocardiogram which showed a drop in her heart function since the last echo in September for the Day + 80 workup.  There was a drop in her Ejection Fraction from 53 to 50 (55 being the low-end of normal and a drop in her Shortening Fraction from 31 (her base-line before diagnosis) to 25 (28 being the low-end of normal).  Our savvy Dr. Gardner, got us into the cardiologist the next day.  Apparently it usually takes two months to get in on the schedule.  We saw cardiologist, Dr. Sebrina Law who took copious notes.  In summary, she feels that Allistaire has very mild chemotherapy induced cardio myopathy.  Her EKG, which measures the electrical components of her heart, was perfectly normal.  Additionally, her heart is not dilated, nor does she have any symptoms of decreased heart function: lack of appetite, lack of energy, shortness of breath.  Because there is no dilation nor symptoms, she chose only to increase her enalapril dose to the maximum of what her weight allows, which only bumped it up an additional .5 ml twice a day.  She said they will just follow her and want to see her again in three months, though I’m guessing, Dr. Pollard will want her in much sooner than that, as it is typical to get echos done after each round of chemo.  I was very thankful that her heart issues are mild and have the possibility of being reversible.

People are always asking me how I am, how are things going?  They will comment ceaselessly, that Allistaire looks SO good!  Every time these two things occur – this question and this comment – I cringe.  How do I answer how I am?  It’s complicated.  I’m often doing great on one level, but there is a way in which something is so fundamentally wrong.  And Allistaire has looked great by all external measures a hundred times and often there was cancer lurking, which if not stopped, will, without question, eventually take her life.  So for me, the last several days have been lovely with all the splendor of reds and oranges and yellows, foggy mornings and brilliant crisp afternoons.  They’ve been quite busy days with chemo every morning and then multiple additional appointments and other events.  But lingering in the back of my mind is the question of those chimerism tests.  Every month a chimerism test is done to determine the percent of donor cells in her peripheral blood versus the percent of her own cells.  Apparently, it is common to only do bone marrow tests every other round with this chemotherapy regimen.  So Dr. Pollard and I agreed that this time, at the end of round 2, we would only do a chimerism test.  The thought is that a chimerism test can give a pretty good idea if something is going wrong in the marrow.  You could conceivably have a small amount of cancer in your marrow that would not show up in your peripheral blood chimerisms, but if anything significant were happening, it would show up with that test.  At this point, this chemo is Allistaire’s only option for treatment.  Were she to have over 5% or more cancer in her marrow, she would then be potentially eligible for few different clinical trials.  This means that if there is only a small amount of disease, we would only have the choice to stay the course with the Azacitidine.  What this comes down to is a bit of willful ignorance.  Why know if there is some small amount of cancer if there’s nothing you would or could do differently?  Why not have a chance to have one more month a little less burdened?  I had a horrible dream about the chimerism tests last night.  I dreamt Dr. Pollard called and said they were 84% and I kept yelling out that was bad, so very bad!  This morning as Allistaire was getting her chemo, I mentioned to the nurse my anxiousness for those results.  When she couldn’t find them herself, she said she would ask Dr. Gardner to check to see if they’d come back.  Dr. Gardner (the doctor who sat down with Sten and I and gave us Allistaire’s original diagnosis), walked to our little infusion room with a bright green sticky note.  All three cell lines are still 100% donor.  Oh Father in heaven, what a relief, what a joy!

In between being discharged from SCCA, returning to the care of Dr. Pollard at Children’s and beginning this next cycle of chemo, Allistaire and I had some seriously packed joyous days.  October 9 -11th my beloved sister-in-law, Jess, and little nephew, Per, came for a visit.  We had a wonderful time!  I cherished Jess’s teary eyes as she sat on the couch at Ron Don and relayed how being present with us helped her to understand the reality we’ve been walking.  It was a gift to me – her compassion, empathy and presence.  And of course, Allistaire was thoroughly excited to have Jess and Per around to entreat into playing her silly games.  Then on Friday night, October 11th, the four of us flew home to Bozeman, thanks to the generosity of one of my dear friends.

Allistaire and I had nine fantastic days at home, enjoying family and the splendor of the changing of seasons.  In Bozeman, the transition from summer to fall to winter can be quite speedy.  The cottonwoods and aspens had all turned blazing oranges and yellows and there was intermittent snow and bright blue skies.  We just had such delightful days at home – Allistaire and Solveig dancing, coloring, pretending to be cats, playing outside together.  Solveig and I spent a day together and Sten and I had a day to go hiking up Middle Cottonwood and then walking around downtown a bit and enjoying a nice meal.  All in all a wonderful time.  Allistaire also had one clinic visit with our local pediatrician, Dr. Ostrowski and then we had to go down to the cancer center to get labs drawn.  It was strange and lovely to see the sign on the window saying that the Bozeman Deaconness Cancer Center was partners with Seattle Cancer Care Alliance.  We had to wait nearly four hours for labs and I was getting pretty nervous but thankfully everything was great.  In addition, to all the other great times, I was able to go to my home church twice and to my old bible study, BSF, once.  It was uniquely wonderful to once again be able to worship, take communion, hear the Word of God taught and simply be with so many other believers who have loved us and prayed for us so faithfully.  It was all pure gift!

So home – home is a place where not every single part of our lives is directly linked to cancer.  At home there is invigorating blue skies and cold, where you notice things like stars and wind ruffling aspen leaves, and the brightness of moon setting as the sky turns pink in the Eastern sky.  At home I am mom to two girls and I clean and cook and organize.  At home I am wife and I don’t sleep alone in a queen size bed though some mornings I’d stretch out my arm, searching in the dark to find my husband, only to remember, oh yes, he’s gone up on the hill behind the house to hunt for elk.  Home is where we are sisters, Allistaire and I – she to Solveig and I to Jess, Jo and Jessica.  Home is all four of us sitting at the kitchen counter eating pancakes and soup and the whole family gathering together in a swirl of conversation and amazing food and the best sangria on earth.  Home is where I tend my ferns and other myriad of plants and where Sten and I sit in the evenings watching Solveig and Allistaire dance like the craziest two wild cats.  Home is where my Father-in-law hits a bear driving to the airport and where his eyes tear up as he holds Allistaire, listening to her every word.  Home is where relationships are complicated and priorities are blurred.  Cancer is no longer the only defining facet of your life.

For those of you who have looked at me as something extraordinary, you need not.  For those of you who have thought, “I couldn’t do that,” yes you could.  Here’s the deal – ordinary life is unbelievably complicated and often its ordinariness, its normalcy, its constant, predictable cycles and routines make it harder to have clearness of vision and courage and inertia to break out of patterns.  Cancer helps with that.  Cancer rips you right out of comfort and security and predictability.  Cancer demands that you never take your eye off of it.  Cancer is an obvious predator.  Do you think I had choice?  Did I yearn to know God more?  Yes, Yes, Yes, but I could never have chosen to cut off my arm and gouge out my eye.  Yes, I am wounded you see.  I have been given sight at great cost.  I once said, out-loud, that it seemed noble to have a dying child, as I grumbled and groaned internally about a private, but devastating situation.  Not two months later, I did have a dying child.  It’s not noble.  It’s brutally hard, but so is being a wife, a mom, a sister, a daughter, an employee, a citizen of these United States, a human on this globe, a child of God.  Cancer allows me the luxury of setting aside nearly all other priorities – when there is a hand gripping your throat, cutting off your air, you find yourself unpreoccupied with what color you should paint the trim or what to make for dinner or if you should put more money away for retirement, what to do if maybe your blood pressure is a bit too high or what’s happening in Syria or those being sex-trafficked in Moldova.  There is a knife about to slit your throat and all your energy and attention if funneled into preserving life.

Thank the Lord, ordinary life is not lived at this high pitch.  The sounds and colors are a bit more muddled.  I don’t have the answer for you.  I guess, just know that I am no different from you and though our struggle for Allistaire’s life, and my struggle to submit my idea of how I want life to be, to the perfectly glorious plan God has in store, is perhaps more public and/or more seemingly dramatic than the life you might find yourself living, there is not less at stake.  I guess at the core, I find it extraordinarily challenging to live a life with eternity in view.  I am constantly lulled and swayed by the things that are ordinary and common to desire in this life.  I am brain washed by the standards of what is considered a “good” life.  God’s ways are SO NOT our human ways.  The things He cares about are so utterly different from much of what I spend immense energy, emotion, time and resources pursuing.  It is staggering how much effort I put toward accomplishing what I want.  But you see, again, things are not so clear, not so black and white.  There are plenty of overlaps with God’s many blessings and our desires.  We are chimeras ourselves.  We are both made in the image of the One True God and so yearn for that which is from Him, and we are fallen, forlorn creatures, bent on our own simple, earthly hopes and desires.  We are eternal and magnificent and depraved and broken.  The hope of eternity through Christ Jesus, is that at last, that one beast will be put utterly to death and only our glorious, made-in-the-likeness-of-God selves will be manifest.  Then turmoil will cease and life and peace will prevail.

My Aunt Jennifer found this prayer and ask that I post it to bless others.  It is simple and profound.  I wish cancer on no one, but I do hope for there to be a way to gain what is received in the stripping and tearing of one’s life with serious illness.  Much has been taken – taken in a flash and wrestled away from a white-knuckled fist.  And abundance has overflowed and life has sprung up.  This was written by a dad who lost his son to neuroblastoma after a 6-year fight, something I cannot bring myself to imagine.

A Cancer Prayer by Stephen R. Chance

Dear God, we have prayed often for you to rid our child’s body of cancer and never let it come back.
We have prayed often for you to spare his body the harsh effects of the treatments he must endure.
We have prayed for mercy and strength. But we have not yet prayed for the things about cancer we would like to keep.
Please let us keep the love that has been laid bare and that binds our family, our friends, and our community.
Please let us keep our preferences to be together.
Please let us keep our appreciation for simple pleasures.
Please let us keep our ability to not sweat the small stuff.
Please let us keep our tolerance for each other’s needs.
Please let us keep our patient smiles responsive to normal childhood conflicts rather than the irritation that so easily ensues.
Please let us keep our tendency to treat others tenderly knowing that we don’t know all the heart breaks they have felt.
Please let us keep the ease with which new acquaintances become good friends.
Please let us keep our enhanced appreciation for nature.
Please let us keep our motivation to live vigorously now rather than planning to live later.
Please let us keep our calling to help others fight cancer with better weapons and smarter generals.
Please let us keep our need to reciprocate the wonderfully kind favors we have received.
Please let us keep the strength to press on when faced with other illnesses, deaths, and human tragedies.
Please let us keep You at the center of our lives during good times, too.
Amen.IMG_5536 IMG_5537 IMG_5540 IMG_5541IMG_5507 IMG_5517 IMG_5527 IMG_5530IMG_5482 IMG_5484 IMG_5490 IMG_5502IMG_5236 IMG_5261 IMG_5277 IMG_5307 IMG_5331 IMG_5376 IMG_5360 IMG_5371IMG_5221 IMG_5214 IMG_5213 IMG_5212 IMG_5174 IMG_5177 IMG_5189 IMG_5198 IMG_5201 IMG_5170 IMG_5164 IMG_5146 IMG_5134 IMG_5130



IMG_5022I’ve really only had one, true social work job, but it was my dream job.  As I lay down to bed on the day that I applied to be a case manager with Seattle’s Union Gospel Mission, I could not go to sleep – so giddy was I.  The only thing that compared were those last few nights before Christmas, when I would sleep on the top bunk in my brother, Patrick’s room, the glow of Christmas lights reflecting on the ceiling.  Being a case manager was just exactly what I wanted to do.  I loved the holistic nature of social work and delighted in the idea of sitting down and setting goals with my clients and advocating on their behalf as needed.  Somehow that role seemed to pair my scientific, analytical mind with my heart of compassion.  While I was not the 45-year-old married black woman with kids my supervisor was hoping I would be, I was very motivated.  However, one of my least favorite responsibilities as case manager, was having to check the apartments of the ladies in our program.  It was a transitional housing program for homeless women and children, and each week I had to enter each apartment and go through a list of items to make sure everything was being kept up. On one such afternoon, I stood, clip-board in hand, and cast my gaze about the living room and kitchen, being eyed by the lady of the house who did not seem pleased.  I came to learn that she did not appreciate my use of the clip-board, it was a “trigger” for her.  The truth is, I scoffed at that.  I really need the clipboard if I’m going to write on the paper, I thought.  What’s the big deal?  Let’s just say that learning about PTSD (Post Traumatic Stress Disorder) triggers was all new to me.  I had the, “get over it,” attitude.  That was, until I entered the bathroom of a tall building downtown one day, on my way to a meeting.  As I opened the door to the bathroom, I was caught off guard by a smell I could not place, but immediately seemed delightful to me.  I was smiling and I didn’t know why.  I sat on the toilet trying to place the smell.  It wasn’t actually a particularly nice smell, but so unbelievably familiar I realized.  And then it hit me – it was the exact smell of my Nana, well not her so much as whatever powder she used.  And that is when I realized that I had gifts I have never calculated.  How many times have little things “triggered” joyous memories in my life?  Something as small as the sound of a chain saw – that brings me delight like I can’t tell you.  That is the sound of my growing up with my dad in the back yard cutting wood.  For me that is an entirely wonderful memory and I still to this day repeatedly derive joy from that sound that causes memories to come flooding back.  What I soon realized, is that for many of the women in our program, their life was replete with awful memories and a whole series of triggers that brought the terror of past days, flooding back with vengeance.  For this particular woman, I was not the case manager holding the clip board checking her apartment, I was the husband that beat her and abused her so viciously that she had fled for her life with her son, as far away as she could get – she hadn’t cleaned their home well enough, and she was going to pay.

In the case of PTSD, a traumatic event or events occur which elicit powerful physiological and emotional responses.  These responses are often appropriate given the event.  However, once the traumatic situation has passed, there may still be “triggers” associated with the trauma that elicit a similar intense response, only now these responses hinder a person’s ability to live life.  A person’s response to the trigger is automatic – there is no thinking through the situation and how to respond, there is only instantaneous reaction.  So I’m clearly no expert in PTSD, but I have come to see that whether or not I have any official diagnosis, there are things that just set me off, and I just respond in a predictable way,  There are roads I have traveled so often, they are gouged out with deep ruts.  There are ways that I respond that have been repeated so many times, that there has become an entrenched pattern.  My response is not thought out and carefully considered, it is automatic.  I liken it to a freeway.  A big wide smooth road has been laid out which allows you to go really fast.  Or it is the drive home from work that you’ve driven so many times, you sometimes wonder how you got there – you were not even conscious of making the turns – having set out, you simply arrived at your destination.  I’m guessing there are both psychological and neural/brain science reasons for this phenomenon, but I see in myself too, sinful patterns.  There are ways that I think about things or respond to things that are deeply entrenched in me.  Some people defend themselves the millisecond you begin to bring something up.  Some people immediately shut down in a group setting.  Some people are quick to blame others, and some people are quick to heap the blame on themselves.

A powerful pattern in my own life is perfectionism and self-sufficiency.  Nearly every single thing I approach, is looked at, both consciously and unconsciously, from the view that what must be done, must be done with absolute excellence and additionally, I should be able to accomplish that.  So was it my parent’s fault for instilling a good work ethic in me?  Was it my 9th grade geometry teacher, Mr. Stroud, who would lean on the over-head projector, big glasses at the tip of his nose, and repeated, “Strive for Excellence.”  Is it the sin of pride?  What I know, is that I am made in the image of the One True God and am thus deemed glorious and I am a fallen, broken, sinful creature.  The good and bad, the beautiful and the ugly, are all mixed up and intertwined.  My tendency toward perfectionism and self-sufficiency has accomplished a lot of wonderful, really great things in my life and comes in handy every single day.  It is also my undoing.  It is also the source of my absolute raging angst and unrest.  At my core, I still believe I should be able to do everything and I should be able to do everything really, well.  And when all my efforts fail and are insufficient, I am just straight-up mad.  I mean I tried really hard, and it still didn’t work!  I distinctly remember as a teenager, thinking that surely if I just kept trying every angle to convince my parents to let me do something, it would work.  If I just kept pushing, I could make my way through.  perseverance, strategizing – they can be great things, but sometimes they are obnoxious and sometimes it’s really just manipulation.  Sometimes seeing the big picture and a hundred steps down the road will get you a really great paying job at a big company and sometimes it is the very “strength,” that becomes your weakness because a poopy diaper equals the death of your child.

Up until last fall, when I heard the phrase, “a gentle and quiet spirit,” my initial gut response was always, “No thank you!”  For me that phrase was equivalent to all the weak, push-over, meek, church ladies I had ever known.  You know the ones who still wear the giant glasses, no makeup and spray their bangs up?  The skinny ones wearing calico dresses and are the pastor’s wives?  The ladies who think lace and mauve are the best?  Gross, just totally repugnant to me.  I was a tom boy.  I’m the one who carried the 50 pound box of nails up the hill, over and over again on our mission trip in Papua New Guinea.  I might not have the best hair but I know not to do that to my bangs.  And I am not going to sit back and never speak up.  At my core I believe in, “buck up!”  I relish my Irish heritage and brawling, partying loud mouths make sense to me.  But you know God, He likes to sneak things up on you.  I think He just relishes making you want somethings you said you’d never want.  He’s done this to me before.  I moved to California, became a Resident Director and married a younger guy – three things I had emphatically proclaimed would never be.  And so it was that last fall the Lord planted those words, “a gentle and quiet spirit,” in my heart.  I found, mysteriously, that I actually wanted that.  But the Lord was opening my eyes to the beauty of those words.  He began to show me that gentleness was an outflowing of a person who had been broken – who had come to truly know their fallenness, their sinfulness, their finiteness.  They themselves had come to be in a position of needing to be dealt with gently, compassionately, so broken were they by things out of their control and by their own failings.  And perhaps the quietness of spirit too, comes from that same brokenness, that same deep-seated utter awareness that I am human, and I really do need God.  I am in desperate need of God because I see how utterly wretched my sin really, really is.  I am in desperate need of God because I have seen that I am not in control of my circumstances.  There is a way in which the words of scripture become known, not by the mind as with memorization, but with the gut, with the core, with the fundamental innards of who we are.

On the night I wrote the last post, I cried out to God.  “Lord, you HAVE to help me!”  Yes, I am fully aware of finiteness, my sinfulness, my weakness, my insufficiencies and I see you Lord as the One in control, as good, as loving, as merciful.”  I do embrace the truths of who the Bible says I am and who God is and both my need for Him and His generous, gracious meeting of my need in Christ.  I know a whole lot of Bible verses and I actually believe them, and it is not enough.  “Lord, show me in practical, tangible ways how to live out the truths of your Word I hold so dear.  “Father, please create in me a quiet heart, help me to truly rest in You.  Help me to learn the practice of incorporating the hope of your promises into the tangible activities of my life.  Lord, how do I do that?  I know it is by your Spirit being at work in me, but show me, show me how to rest.  I cannot go on this way, in this raging swirl of anger and sorrow.”

It was 1:30 in the morning and I lay in bed with the lights on.  I was blasted tired.  But for some reason I thought that would be a good time to pick up the stapled papers a friend had sent in the mail.  I’d had the papers for probably a week and a half and had opened them, noting they were some sort of Bible stuff that I’d have to look at a time when I was in the mood.  I wasn’t so sure I was in the mood, but picked them up anyway.  “Peace, be still”:Learning Psalm 131 by Heart,” is the title, an excerpt from David Powlison’s book,”Seeing With New Eyes.”  “Peace, be still,” seemed a good start.  I began reading, “This person (David who wrote Psalm 131), is quiet on the inside because he has learned the only true and lasting composure.  He shares the details of what the peace that passes understanding is like.  Amazingly, this man isn’t noisy inside.  He isn’t busy-busy-busy.  Not obsessed.  Not on edge.  The to-do list and pressures to achieve don’t consume him.  Ambition doesn’t churn inside.  Failure and despair don’t haunt him.  Anxiety isn’t spinning him into free fall.  He isn’t preoccupied with thinking up the next thing he wants to say.  Regrets don’t corrode his inner experience.  Irritation and dissatisfaction don’t devour him.  He’s not stumbling through the mind field of blind longings and fears.  He’s quiet.”

At that point I laughed out loud.  “Really God?  You’re funny.”  I had just minutes before specifically asked for tangible help learning how to live life with a quiet spirit and right in front of me was a description of a wound-up person that sounded a lot like my noisy, raging heart.  Right there was something to begin the process of learning to rest in the Lord.  Thank you God for hearing my plea.  The next paragraph reads, “Are you quiet inside?  Is Psalm 131 your experience too?  When your answer is No, it naturally invites follow-up questions.  What is the “noise” going on inside you?  Where does it come from?  How do you get busy and preoccupied?  Why?  Do you lose your composure?  When do you get worried, irritable, wearied, or hopeless?  How can you learn to regain composure?  Do you need to learn it for the first time?  We’ll get to these questions, because they are what Psalm 131 answers.”

I need some STRATEGERIE!  When I was a kid I read a book about Pocahontas and the thing I remember most was the morning ritual the people had where they would greet the sunrise.  I have always wondered, “Lord, how, from the moment my eyes open, do I orient my heart and my day to You?”  Because I know, if I don’t address the direction of my heart and thoughts immediately, they are simply off and running.  Within 5 seconds of beginning my day, I am already pacing through my list of things to do and strategizing how I am going to accomplish everything and be everywhere I need to go, on time.  Again, this pattern of mine, has enabled me to accomplish a lot in my life.  But it’s also robbed a lot from me.  This pattern also is saturated in worry, and pressure.  I expect a lot of myself, and I don’t have a lot of grace for failure.  When I fail, I should have tried harder.  I hold myself to an impossible standard.  The saddest part of it all is that it not only hurts me, it hurts the people around me.  I remember absolutely bellowing at Allistaire last winter when she decided to take the long way down the hill to the car rather than the more direct stairs.  “We’re late!” I lashed as I hurriedly and roughly forced her into the car seat, and for the next five minutes, preached on the virtues of speed and the importance of not being late, blah, blah, blah.  And for the next 20 minutes I seethed that we were late again and seethed that I was such a wretch and Allistaire cried in the back seat.  Her path, versus my preferred path to the car, might have a 30-60 second time delay.  So you see, it’s not just cancer that has me all wound up.  Cancer just amps up my already underlying issues.  My reactions in the face of cancer are exponentialized versions of my normal patterns.  It is all just makes me sick to my stomach and just heaps on more guilt and more despair and I am desperate for the Lord to show me another way to live.  How do I live the life of rest in my spirit that I know you have for me?  How do the truths of your word more deeply and thoroughly direct my heart and actions?  There are so many evidences in my life of how far the Lord has brought me, but boy am I often overwhelmed at how far I have to go, at how entrenched are my patterns of sin.

So ultimately, the answer to Romans 7 is, “wretched man that I am, who will save me from this body of death?  Thanks be to God through Jesus Christ our Lord.”  I take great joy in the hope of knowing Christ, but I was still asking the Lord for some tangibles.  “But what do I do, Lord?”  There is a lot to contemplate in Psalm 131 but the thing that stuck out to me that night was this, “Lord, my heart is not proud, and my eyes are not haughty, and I do not go after things too great and too difficult for me.”  Those words just burst off the page to me, “I do not go after things too great and too difficult for me.”  I have been trying to keep Allistaire alive!  Too great and Too difficult for me!  Now, I know rationally that I have no ability to determine if Allistaire lives or dies, but I live out my daily responsibilities with the absolute weight of life and death.  Why am I so angry with Allistaire when she doesn’t eat?  Because it is all tied up with the fundamentals of keeping her alive.  Every single responsibility gets directly linked to the weight of her possible death.  I get it, I get it, I know I just need to calm down, but how?  The Lord showed me that He will help me to see what are the responsibilities He has given me.  He said He would help me sort through what is my task and that of the doctors, and what is His.  Rather than approaching meal time with the weight of her life, or the even lesser, but still awful weight of potentially needing a feeding tube, the Lord can show me what He has entrusted to me.  My responsibility is really as simple as purchasing and storing good food, preparing it for her, providing a reasonable amount of time to consume the food and encouragement to do so.  That’s it!  I can’t make Allistaire eat!  What a novel idea.  In that moment the Lord freed me up to choose to look only at what He’s given me.  When the diarrhea comes or she throws up after an hour and a half of eating dinner, what is mine?  What has the Lord given to me to do?  I rub her back and speak kindly to her as her entire dinner falls into the trash.  I clean her up and give her a new diaper.  I make sure I put on diaper cream so her little bottom won’t get raw.  I make a note of how frequently she vomits or poops and in what circumstances.  I am faithful to convey the information to the doctors.  They determine what to do with the reality at hand.  It’s not my responsibility to determine if this is GVHD or a lingering virus.  It’s not my responsibility to weigh the pros and cons of immune suppressing steroids.  It’s not mine to determine if this cancer will take her life or not.

For the past four days I have not yelled at Allistaire.  Really, I haven’t, I mean at all.  And this, is literally, a miracle, an act of God working through His Spirit in my heart.  This one tangible step is helping me to practice the truths of scripture.  It is a beginning.  It is a gift.  The last four days have been quite lovely with Allistaire and I have felt much more light-hearted.  My spirit’s angst has been smoothed down.  I’m going to keep asking Him to reveal to me those practical ways that will help form new patterns and paths in my heart and mind.  My flesh over the years has ground down deep ruts – habits of heart and habits of actions. I am weary, sick to death, of those destructive paths.  I want to go the way of the Lord.  I want to know, in practice, what it is to walk with Christ.  How I long for the day, when it can be sincerely said, Jai is a woman with a quiet and gentle heart.  That would be no less of a miracle than Allistaire being cured of cancer.  Lord hear my prayer.IMG_5042 IMG_5049 IMG_5051IMG_5029 IMG_5033 IMG_5034IMG_5020

Transitive Property


IMG_5014Sunlight filtered through leaves, ripples like waves reflecting sun.  The wall undulates with shadow and bright.  It calms me.  The leaves ruffle and quiver.  The trunk and branches moved by wind, light skipping.  I am exhausted.  Wildly furious, my insides quiver with the unceasing energy of trees in storm.  Guts and sinew under absolute force being torn from the inside out.  Unrelenting pressure and I push back and back and scream silent rage.  Every where I turn I fight, I fight.  I beat my fists and my face strains hot.  I oscillate between rampage and surreal calm, but both are fight, both are the jaw set tight, teeth clamped down.  The slightest touch can unload the spring of fury, so great is the tension set.  No provocation is necessary.  Just outright explosion of human force and raw, unfiltered, gut splattering emotion of terror, sorrow, anger, fear.  Deep bruises of seeping sadness, so tender and vulnerable I just bleed and bleed.  I wrap tight my thread bare facade of okay-ness to keep from falling over, to keep my feet moving forward.  And all the while I know I am ridiculous and all this fury and energy circling round like the darkest tornado, ravaging as it goes when He just keeps holding out His hand.  He keeps entreating.  He keeps inviting.  And round I go, shoving and kicking, keeping Him in the corner of my eye.

Every single day I battle Allistaire to eat.  I set the timer for five minutes and check her progress.  I am flabbergasted that she is still chewing the same utterly masticated, obliterated bite, seemingly incapable of swallowing.  Eat Allistaire, Eat!  And I check the clock and 50 minutes have passed and the plate looks the same and I set the timer again and threaten again.  Do you want a tube up your nose?  “We’re a team,” I yell; as though she knows what a team is.  You have to put the food in your mouth!   Meds are already 30 minutes late.  Another poopy diaper, a rank pool of diarrhea and the fifth since the morning began and I question myself over whether I should call the nurse.  They will probably want to scope her to see if it’s GVHD and that means more predisone and that means more immune suppression and that means less offense against that cancer, whom I despise, and that means my girl dies and that means I have to figure out how to live my life without my child and ravaged by God, and I rage and scream and beat my fist on the freezer door.  I collapse in the chair and I hate myself and I hate cancer and am furious at God and round and round I rage.  And He extends His hand to me and I keep Him in the corner of my eye.

The light is eight inches more to the right and the sun slowly lowers.  I rarely open the blinds anymore, preferring to stay cocooned in this enclosed space.  We haven’t taken a walk in weeks.  I haven’t been to church in months and the walls close me in, protecting and isolating.  We languish in this chemo cycle, round and round, with no end-point, just circling.  Since the time of my late childhood, when I had somehow come to know, as with a sense rather than thought or fact, that life sometimes hands over tragedy, I have prayed upon the first star of the night, that should disaster strike, that God would hold me close, that He would keep me from denying Him.  And night after night, I search the twilight with a frenzy no one else sees for that first star.  And I repeat my mantra and I ask to be held in by Him.  No matter what comes, Lord, help me to never turn away from You.

The tempo of the music rises, the fist constricts and the squeeze won’t let up and I run and run and pound my feet.  My tendency toward perfectionism, manic to every detail, every dose, every diaper, every color of skin, every hour of sleep, every gripping of tummy, every appointment, every procedure, every clinical trial, every, every, every.  With all the strength of my arms and fingers I press away at the cancer and throw my body weight around to knock it away.  I push and exert my 38 years and parental authority to get Allistaire to eat and I draw up the vigor of my mind to understand, to ask the right questions.  All my human strength and skill is called up to service in this all out war.  And it is not enough.  It is not enough.  I am exhausted and ashamed at my ineptitude.  And I stare flat eyed in the mirror, face laid bare and sick taste of rank sin in my mouth.  Shame for the yelling.  I am desperate for my love for her to make sinning against her impossible.  Surely I love her too much to take out my frustration on her.  Surely I love this girl too much for cancer to come slinking back and take her away.  My voice is raw from yelling at God to show up.  Okay You’re right, You’re right.  I can’t do this!  I am too frail, too weak, too finite.  My exertions are insufficient.  And there is His hand and He invites me to walk out onto the water, to trust Him, to be with Him.  But I look at the water.  It is dark water.  It is vast and deep and dangerous and I am wild with fear and wild with anger that He should call me to walk out on that!

All I ever wanted was to decorate my beautiful house and plan my nutritious meals and put together fun festivities for my family and learn to cross-country ski and fit into size 6 and be cute and have my husband love me and be kind to people and help where I can.  I sponsor my two girls from Ethiopia who have not heard a word from me in nearly two years.  But it’s not true.  I’ve always, always wanted more than that.  As a third grader I wrote that when I grew up I wanted to go to Africa and dance with a monkey and tell people about God and I was utterly sincere, about both of those.  And I wanted to be a doctor so that I might be like Christ and care for people’s tangible, physical needs as the first step in sharing His ultimate love.  And I chose to be a social worker because I wanted to take whatever privileges of mind and resources and upbringing I might have to be brought to bear on behalf of those so dear, so precious to the heart of God: the sick, the poor, the orphan, the widow.  And I still want to have clothes that are hip and a body I’m not embarrassed of and big, tasty dinner parties and a vacation now and then and to volunteer in my daughter’s class.  I’ve taken these gifts of mind and resource and I pulled out the map and plotted my course and then planned to implement my steps.  And my God, whom I love with every cell in my being, came and ripped that sheet of paper to shreds and confused the whole picture and showed me and shows me over and over my finiteness and turns my face to His vastness, to His incomprehensibleness, to His utter otherness and He blurs my view and I can’t see the way forward and He extends His arm and He doesn’t tire and I rage and rage that this cancer must end and I want my life back and Yes, God, YES YES YES I DO want what you have for me!  I do!  I want to go running into your arms and I never want to leave and I want to turn my eyes away from those tattered pieces and I just want to rest in You.  Oh how I am spent.  I just want to collapse and turn my back to all my plans and all my sin and all of my insufficiencies and I want to keep my eyes fixed on you.   I am hungry to worship You Father.  I am so thirsty to drink of You and be replenished.  I thirst to know You.

It is a day later and the flurry of emotion has dampened.  But is still there, smoldering, just under the surface and really can break through at any moment.  It doesn’t take much.  I am clearly outright, raging mad.  I want to say that I’m not mad at God because it seems crazy to be so furious with one you hold so dear.  But now that I say it, you know, the people I love the most on the planet have incited the greatest angst I have ever known.  Maybe I really am mad at God.  I guess I question whether that’s it because somehow being raging pissed off at God seems like the antithesis of faith in God.  But I’m not sure about that.  I mean, I think they are connected because I can imagine myself so utterly trusting in God that I just sort of float along with this whole thing.  That’s how I want it to be.  I want to be just serene, calm, exuding grace and patience and love.  Instead I disgust myself as I watch myself spit words of rage at Allistaire.  I flee the bathroom at SCCA when the 800th sweet old lady wants to ask about Allistaire and proclaims that she’s going to be fine.  I want to scream back, “Why?  Why is she going to be fine?  Because she’s a little kid and she’s cute and wearing pink cowgirl boots?  You think she’s somehow immune to that brutal disease that is stalking your life too?”  What am I doing?  What am I so worked up about?  Damn it, I think I just want to be in control.  That old lady makes it sound so easy, but man, I try, I try so freaking hard I’m surprised the tendons in my neck haven’t snapped.  And no matter how much effort I put into this, no matter how much I am saturated in my desire for her to be well, I really just have almost nothing to do with the outcome.  And it’s all linked together: her life, my life, they’re all intertwined.  There’s no compartmentalizing.  And I want it all, all of it, her, what her in life looks like.  And I’m furious and I’m terrified because I don’t want to give up what I want.  The details of what it tangibly means to fight cancer are perfectly clear to me.  The possibility of her loss and the ripple effect of sorrow and a big hole in our lives is quite imaginable.

And so I turn with fury in my eyes when I face God.  What?  What do You have to offer me?  Huh?  You take away this and you take away that and you gouge my heart and slash my flesh and you offer me…what?  And there was the silent perfect moment in Dostoyevsky’s, The Grand Inquisitor, when the Inquisitor has stalled in his rampage against Christ and he finally quiets but is seething in demands for Christ to answer him.  And what does Christ do?  He kisses him.  He answer’s that raging, arrogant man’s accusations and demands and questions, with a kiss.

“When the Inquisitor ceased speaking he waited some time for his Prisoner to answer him. His silence weighed down upon him. He saw that the Prisoner had listened intently all the time, looking gently in his face and evidently not wishing to reply. The old man longed for him to say something, however bitter and terrible. But He suddenly approached the old man in silence and softly kissed him on his bloodless aged lips. That was all his answer.”

And it seems this is the way it is with the Lord.  I stomp around in a huff and shake with fear and feel buried in sorrow and what does He do?  He extends His arm and offers embrace.  He does not paint for me a picture of what the days ahead will be.  He doesn’t tell me how long this will go on or what the outcome will be or if I’ll have to come to know what it is to take my child home to die.  He doesn’t answer me as I want.  Instead, He asks me to walk out onto the waters, into a future unknown, with no guarantee of anything and no means of security except Himself.  And I downright, absolutely hate it.  Because I am fleshly, because I am earthly, because I am finite and broken and small and nearly blind.  But there is too, that light in my gut, not of fury and wrath, but of desire, of fundamental, to-my-core, penetrating every fiber, longing to accept His offer.  There is the yearning so keen it casts down hot tears, and I want to say, Yes, Father, there is nothing I want more than You and I ache to be at rest knowing that You are all that this life is about.  Everything, everything matters, but only because it is all wrapped up in You.  And I choose to step out into the realm of mystery where there is no path for my earthly eyes to see.  I choose to stake my life on Your claim, that YOU, You, yourself are THE WAY!  There is no path.  There is no American Dream to be fulfilled.  There is no laid out ten point plan.  I am in YOU and that is all that matters.  Because of Christ on the cross I am invited in and kept in and delighted in.

I don’t know this man, Britt Merrick, but I hope to talk with him one day.  He has walked a similar journey, but is ahead of me.  My friend suggested I listen to his sermon from this past spring, entitled, “When Sparrows Fall.” (You can find it in iTunes)  I cried.  I heaved and sobbed as I listened.  I know that the whole of scripture is true and I know that this life is SO much more than what the surface reveals.  I know, as much as I know anything at all, that I love the Lord my God and I want to learn from Him what it is to live this life IN Him.  But I’m all tangled up you see, in this earthly battle for the flesh of my child, in this battle of my fleshly heart so bound to this earth.  But bit by bit, He is grasping onto me more.  I know from times past, when I was drowning in my sin and I despised His name, He does not let go of His children.  I have been bought, redeemed by the blood of this Christ whom I am growing to love more and more.  I have as a deposit, the Spirit of God, dwelling in this broken down temple of my flesh.  You fill me Lord, You give me the ability, the strength, the grace to take each step forward.  Lord be with me, be with me.