Captain, my religious belief teaches me to feel as safe in battle as in bed. God has fixed the time for my death. I do not concern myself about that, but to be always ready, no matter when it may overtake me. Captain, that is the way all men should live, and then all would be equally brave. Stonewall Jackson

Standard

My husband is a climber.  He goes to the climbing gym and practices putting his body into all sorts of positions to move toward the point he’s trying to reach.  I too am a climber if you define a climber as one who climbs.  However, I did most of my climbing when I was a kid and it wasn’t in a gym; it was occasionally on rocks but most often in trees.  There was a very tall cedar tree in our backyard growing up that my brother and I would climb.  Climbing a cedar is tricky business because the branches slope down and the bark is naturally more smooth – add the inevitable rain and it’s quite slick.  There are two things I learned to do while climbing.  First, don’t look up too much because it always seemed that debris from the tree would get in my eyes.  Secondly, and most importantly, only move one of your body’s limbs at a time.  Always keep three of your limbs firmly attached to the tree while you move the fourth.  I think my grandpa may have actually taught me that.  I think it’s pretty sage advice.  As one who craves security I always followed this rule of thumb.

I find that this idea has become an unspoken mantra in my life.  I feel a need for safety and security that is unparalleled.  So much of what I do in life can be connected back to this need.  I want to minimize risk and maximize security.  I want everything securely in place before I ever have to step out and risk.  I want as much as possible to have all my bases covered.  My naturally analytic mind sees a thousand possibilities of what could be and I set out to deal with all potential hindrances to what I want to achieve.

Security of the sort I crave is a virtual impossibility here in the world of cancer.  I sit with muscles still tingling a bit from nervousness after meeting with one of Allistaire’s doctors to get some questions answered.  I thought my questions had simple clear answers, but nearly an hour later I was once again reminded, no, that is not the case.  There are thousands of possible different scenarios.  I was hoping to confirm some time frames of Allistaire’s treatment so I could let you all know what the next steps will look like.  What I learned was that day 28 is the magic number.  Day 28 is 28 days from Allistaire’s first day of chemo.  Today is day 16.  On or near day 28 Allistaire will have another bone marrow biopsy and aspirate to determine how her body responded to the chemo.  Everything that follows hinges on the results of this test.  Test results could take 2-4 days depending on which day of the week the test falls.  Allistaire’s baseline blasts level was 21%.  This means that 21% of her bone marrow are blasts, whereas normal healthy bone marrow would have 1-2% blasts.  The pathologist will also look at the blasts themselves to determine if they are normal blasts or cancerous blasts.  The test results fall into the categories of complete remission (CR) which would mean less than 5% blasts, partial response (PR), very good partial response (VGPR), and SD and PD (I don’t know what these last two stand for but are on the bad response end of the spectrum).  A bad response would mean that the chemo had no effect on the number of blasts or that they have actually increased.  If Allistaire is in complete remission with less than 5% blasts, then she will go on to the next round of chemo which will be 8 days long.  If the number of blasts is over 5% then she will need to get a bone marrow transplant.  The goal of successive rounds of chemo would then to be to reduce the number of blasts as much as possible in order to get her body in the best possible place to have a transplant.  If she were to have a bad response, she would likely come off of the clinical study and the doctors would need to strategize about what might be a more effective course of treatment for her.  I don’t know any details about what this would mean except I think it means that they might use different types of chemo at varying intensities along with a probable bone marrow transplant.  Regardless of the results of the bone marrow test, we would probably only have a few days at home before she would need to return to the hospital and be onto round number two.  At the end of the 8 days of round two we would be able to return home despite her ANC (Absolute Neutrophil Count) being zero.  If she were to develop a fever we would need to return to the hospital within an hour to have her started on antibiotics.  If this were to happen we would have to stay in the hospital until her ANC rises to 200.  Her ANC can stay at zero for 1-2 weeks once it hits zero which occurs toward the end of each round of chemo.  Once the ANC starts to rise it can take 1-2 weeks to reach to 200.  Her ANC must be 750 before she can begin the successive round of chemo.  Fortunately the time it takes to rise from 200 -750 is a much quicker pace than the beginning rise from zero to 200.

This road we’re on is not simple, it is not clear, it is so long, so very long.  Five months sounded long but I am learning from others on the unit who have been traveling a long time that it might be ever so much longer than we first knew.  Five months is really more the optimal time frame if everything goes well.  And even then, if at the end of five months you are sent home supposedly cancer free, you have to wait years to know if you really are in the clear.  I do not like this sort of predicament at all.  I want to see the goal laid out before me and know the path to get there.  I have been taught all my life the necessity of delaying gratification to achieve greater things rather than catering to one’s immediate desires.  I can do that, I’ve done that so many times.  This feels altogether different.  In this land in which I’m walking there actually are no roads or perhaps there are a thousand million roads so that having a road is of no help in determining which way to go.  I have no other choice but to take one step at a time whether that be one day at a time or a span of five minutes at a time.  This makes me feel absolutely out of control.  I hate being out of control.  I crave control because I want to determine what will be.  No amount of effort or desire on my part can actually DO anything about what’s happening in Allistaire’s body.

In the last 30 days since this all began, I periodically find myself wanting to dive into the details of how everything works and the numbers, those sacred numbers.  The numbers, the statistics have a powerful allure.  Numbers feel so solid, so reliable.  When one feels out of control you are frantic to find a solid place to plant your feet and numbers declare by their universal reality that they are a place to grab onto.  They declare themselves objective truth.  I find myself tossed in the dark cold waves over and over.  I see no land – anywhere -and I grow more and more frantic.  How long can I tread this water.  My strength wanes and my head starts to dip down into the water.  My fear is a frenzy in my mind and my hands lunge out over and over, desperate to grab on.  I sense in my gut that I’m going down.  I’m going down. I want to invite in the simplicity, the clearcuttedness of numbers as a solid place in which to stand.  The numbers might not necessarily look good but at least they are solid.  They are a land that might be inhabited by wild animals that also threaten my life, but at least they are land.  I look the numbers over, turning them over to examine this side and that.  So they say 50% of AML patients are cancer free with standard treatment after 5 years.  I contemplate the numbers.  I like their solidness but I still try to make them into the shape I want to see.  So they say that this particular sort of genetic changes makes the prognosis this percentage better or that percentage worse.  Okay, so I turn the numbers over and over.

As I’ve said before, what I’m really looking for is hope.  I’m wanting to find something that will offer me hope.  Hope is really a future form of security.  It is an acknowledgment that, yes, the road is hard and scary right now but I have confidence that in the end everything will be okay; everything will work out alright.  Hope is the handrail that get’s me to safety.  Hope is the space in-between the fear of demise and rest in the “rightness” of the future.  For myself, hope comes in the specific form of my faith.  The qualities and dimensions of my own hope are formed in my faith of who I believe Jesus Christ to be.  This faith absolutely directs the sort of hope I have.  Soon after beginning to attend our church I learned of a term that well describes this space and time of life in which we live.  This present life falls in-between “the already and the not yet.”  I live in a time of fulfilled promises and unfulfilled promises.  Christ has come into the world and by His death and resurrection, accomplished the end of the ultimate power of sin and death.  But we all know sin and death are still very much with us.  They no longer have to have ultimate power over us, but we still live in a world where they do exist and do have some power.  What is it that will enable me to keep walking?  What encourages me to go on; and not just to go, but to go without a fear that undoes me, disables me, stops me in my tracks or simply makes me miserable?  The Bible tells me that Christ has come to do away with my sin and thus rescue me from ultimate death which is eternal separation from God and that Christ will return again and redeem all things and set everything right.  I live in the middle of those promises.  But I am not left bereft in the middle of that wide open space.  There is yet another promise, and that is that God will sustain me in every single thing in my life great and small, He promises not to leave me or forsake me but to carry me.

I do not have the sort of security I yearn for in my humanness, the sort of security that comes from my own limited imagination, finite strength and wisdom.  No, I don’t have the sort of security I want that would come from hearing that kids with AML have a 90% survival rate.  That is the hope I want to grab hold of, but it is neither available to me or ultimately reliable anyway.  I am, however, offered a much less initially satisfying security.  I am invited to believe in something I cannot see with my eyes, I cannot hear with my ears, I cannot touch with my hands, but I am told is more real than anything I have known and is a security far greater than my greatest needs. Let’s say I weigh 150 pounds and I am offered a nylon climbing rope that can hold 5000 pounds.  I’d probably feel pretty secure.  What God is offering me is far beyond an offer of millions of ropes to hold me up.  Security is something I crave and yearn for in the very core of myself.  The sort of security God offers me in Christ is quite different in quality and dimension than the sort of security I am prone to seek out on my own.

6 responses »

  1. AMAZING! My faith is inspired. Jai thank you for being willing to write about the rich nuggets of truth and faith that can only be revealed to a person walking such a brutally difficult path.

  2. Jai – I needed to read this so much today. My mountains are different, not so steep and not near as threatening, but they are there all the same and I have been getting a little weary. God is using your raw, honest sharing about your struggle to speak to me tenderly. I continue to hold you in prayer, praying that even as you have no idea what trail to take, you are able to cling confidently to the hand of the Trail Master. Much love.

  3. I don’t actually have anything to say after reading that. For me, responding with words seem kind of out of place. My instinctive reply is more of an empathetic & sharing sigh…which is hard to do sans voice & eye contact.
    You’re in a good place, Jai.
    It seems you’re going deeper into the cavern (or maybe climbing higher to the apex) of where the depths of God heart is… and you’re getting a view & a knowing immersion that few of us ever get.
    As hard as the broad issue of security, thank you for fighting for truth and for fighting to understand that which can’t be seen, touched, heard… it would seem that far from land and solid footing is where you’re growing the deepest roots yet in Christ.
    Press on… or rather continue to cast it on Jesus… His burden is lite.

  4. so true… to everything you said. this past summer i had a melanoma on my leg and then developed a severe staph infection and almost lost my leg. during this time i was also challenged with security, and where i place my hope. i always had the security of everything going pretty well, and then that is rocked. i had part of my hope placed in my house (which we are now having to short sell) and a large part placed on my family. people always say things like, “well at the end of the day, you still have your family.” and then i realized that this too, could be taken from me, just as i could be taken from them. it was then that i realized my hope HAS to put in Christ. apart from Him, everything else in this world can go- our health, the health of our family, our earthly possessions. Jesus is the only solid thing I can put my hope in. I was reading in Hebrews 12 the other day about faith and people that lived by faith, and it hit me that they all had their hope in things they wouldn’t see this side of eternity. It really challenged me again, to live by a faith not based upon what God does, but who He is. thanks for all your transparent and encouraging posts:)

  5. I love you for your honesty and everything else about you! We r here, daily seeking His face praying for you, Sten, Solveig and Allistaire. How thankful to have such awesome family/friends!

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