Wrestle some more

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IMG_3206I awaken from a truly good night’s sleep.  I only had to get up at 2am for a few minutes and otherwise I slept great.  I find myself singing, “This is the Day that the Lord has made.”  I am happy.  I am hopeful.  Yesterday, as Allistaire and I tossed the blue and white swirled ball back and forth, I watched her silly face.  I gazed at the goofy faces she was making.  “She is finally coming back to herself,” I thought.  Here is Allistaire, the real Allistaire being unmasked.  I felt such tremendous hope in that moment that this will all turn out as we so long.  I’ve been allowing myself to imagine bringing her home to live.  I’ve been allowing myself to imagine life, normal life, with her in it.  I still say with my words, because I know it in my mind, that maybe we will only have a year with her.  But maybe, we can just make it past that magical year mark where the risk of relapse goes way down.  I know the road ahead may still be very hard, filled with all sorts of challenges as a result of her treatment, but I hope there will be a road ahead with her.

As I smile and ready myself to leave the room to shower and start the day, I remind myself that this may not be what God has for me.  We are still not out of the woods and the thought of a Make-A-Wish trip to Disney World flits through my mind.  All sorts of little logistical questions speed past – will it be too hot?  She will need blood – will she need special blood now that she has had a transplant?  She will be immunosuppressed so she could easily get sick and what would that mean?  Will she even be able to walk?  This is the day The Lord has made, I remind myself.  No matter what the day holds.  This is a day of His making.  Just yesterday I formed these words in my mind, “I have a good life.”  They startled me but then I affirmed them.  Yes, I do have a good life.  God has been pleased to shake up my life.  He has not made it ordinary.  All sorts of wonderful things are coming out of these days.  I consider what He has shown me and I treasure them.  I know I have been given great gift.  As I left her room, her CD played and she was snuggled in bed for her nap, I thought about how many times I have heard those notes.  Those rises and falls and moving of sound and in how many different realities and days of dark and light these notes have been the backdrop.  The notes are beautiful and they make me sad and they also cause me to smile feeling it is lovely to be at a point in the journey of such bright shining hope for the future.  We might just make it through.  You never know.

With the ritual of the early morning, I extend my hand to the night nurse for the paper.  She hands me the labs and I scan.  I see the ANC up from yesterday.  But the blasts are not listed.  There is no line for Absolute Blast Count nor a line for Blasts %.  For the briefest of moments I hope that is because they are considered irrelevant.  I look into her eyes and ask why they are not listed.  The lab called.  They need the pathologist to look at them to see if they are blasts.  No, I know they are blasts. The big question is, what kind of blasts are they.  And I know only Flow Cytometry can answer that question.  Heat creeps up the back of my neck and by the time I walk off the Unit toward the showers, the nervous tension has spread through my lower back where it just sits, heavy.

Three times she has had blasts in her blood.  Each round of chemo was declared, “failure”, with the rising wretched presence of blasts.  It has never, ever been the normal kind of blasts.  It has never been good.  Blasts have always been the markers of failure.  And this time I know there is no next option.  Failure of this last great attempt with transplant means utter failure.  It would signal the end.  It would be time to close up shop and how you do that, I don’t know.

My face contorts but I only cry little.  I don’t want to look hideous today.  I don’t want to ruin my eye shadow.  How vain and how pathetic – yes and no.  I am not ready to fall to pieces.  There is a sliver of hope that this time they could be normal.  This time there is a second marrow, not only a diseased one.  It could be that the new donor marrow is just working like crazy to put out blood cells and that can result in a few blasts, which are simply immature cells.  But I know I must consider the immense possibility that this is not the nature of these blasts.

I just keep thinking of that silly face she made yesterday.  I can see the way she tilts her head to the side, with closed mouth and dropped chin, her eyes lifted upward to the ceiling.  Then knowing she was funny, she laughs.  She scrunches up her shoulders and her eyes are slits as her cheeks are shoved up by that great toothy smile.  I just don’t know how to live without her.  I just don’t WANT to live without her.  I want her in my life.  I don’t want a life with her gone.  Already my mind is going to questions of how long will it take for her to die and will we be at home or in the hospital, and oh, I just don’t think I can endure months at home watching her slowly be taken.  And I wonder, why God?  Why didn’t you just take her before, when all looked lost?  Why would you give us this beautiful hope of transplant, just to dash our skulls against the rocks again?

But then I stop.  I don’t even have to look down at my wrist at the new tattoo meant to be a reminder.  I already know.  “Lift your eyes.”  That is how you will live through this – come what may.  Whatever the results of the pathology test, whatever the days ahead – they don’t dwell in isolation.  They exist in the midst of an expansive, surrounding reality.  Imagining months at home of perpetually preparing for her death, it seems like nothing but pure, ravaging torture.  Again the question of “why?”  Why would God allow this tedious torture to go on and on?  If He is just going to bring her life to an end, why didn’t He just take her already?  Every cell of my flesh is absolutely wild with desperation to get out from under the suffocating weight of this reality.  I fear my breath being crushed out of me, my ribcage collapsing under the immensity of the darkness over head.

Ultimately I see that this is a question of what, really, is the purpose of these lives we live.  I grieve at the thought of never knowing Allistaire as an adult.  I see all of her beautiful, unique personality qualities and I want to see them unfurled – I want to see them full and mature.  But what if this is the purpose of her life.  What if these short three plus years are exactly what God made her for?  What if she is full to bursting with living out days God has planned for her?  What if He allows this to go on far longer than I think I can bear, because He still has things He wants to show me – to show all of us who are witness to these days?  What if growing up, going to school and having friends and having a career and a family and all of that wonderful stuff I have hoped for myself, is not the ultimate fulfillment of life?  What if those are just side details?  What if the core of existence is to see the living God face to face and to come to truly know Him?  Well, it this is the case, than all these other hopes and things we strive for are essentially irrelevant or at least extraneous to what should be the core thrust of our life.  I find myself constantly wanting to “get my life back.”  I just sometimes feel crazy desperate to have a normal life.  But then I hear the Lord saying to me – THIS, right here Jai, THIS is your life.  And I rage and I beat my fists against His chest because it hurts so bad.  And I ask how can you do this to me?  How can you be so cruel?  How can you deny me the life you gave me?  How can you take her back?  And He stands firm until my fury is spent, until there are breaks in the sobs.  And I don’t know how He tells me this, but I hear Him remind me that this life is the life of the seed.  The life of the tree is the life to come.  The seed must fall and die, so that the tree can grow up in its place.  This life looks nothing like the life to come, but it is absolutely tied to the life to come.  You can not tell by looking at the seed what will come of it.  Had you never seen a tree, you could never, ever imagine a tree by simply considering the seed.

So I have ruined my eye shadow and my large nose is no doubt now much larger from the tears and the raging explosion of the sinuses in response to grief.  I don’t know what I will know tonight or tomorrow.  I have had to wait now so many times.  So many times I have had to live through minutes and hours and days wondering what God has in store for my life.  Countless times I have had to wait for a phone call or the face of a doctor to appear.  Countless times I have had to ride up and down along the wave of hope and sorrow.  I know just a little bit more than I used to, how to do this.  I know the ravaging sensation of having a wave sweep you off your feet and hurl you into darkness, of the wild grasping to figure out which way is up.  I know the pleading, desperate prayers for God to please help me, please hold me up, please give my eyes to see, please give me ears to hear.  And I know to expect that He will not answer as swiftly as I like and His comfort will not come like a bolt of lightning.  He will probably not respond with some other-worldly vision – some tangible proof that He is real and that He is good.  But His Word that He has planted in me will rise up.  The truths He proclaims will spread and fill and lighten the load and pull back the darkness.

I don’t know the true nature of these blasts.  If they are not leukemic I wonder at why God even lets them be present – why torture me?  But then I know I am so small, I am so finite.  I have sought to yield to The Lord, but it is something I must come back to again and again and again.  Such hours as these are gift from His hand, because I am forced to again consider what this life is about.  I have allowed myself to imagine bringing Allistaire home to live, but what would that mean, what would that look like?  Will I just fall back into that rut of the expected, common human life.  Will I just expend my energies again for the things that seem ultimate in this world?  Will I set again the bar of “good,” in accordance to the norm?  Have I really yielded or do I really just want my normal life back?  I wrestle and wrestle with this God who calls me to lift my eyes – to see life as He proclaims it to be.  Here is what it comes down to.  On one hand it seems ludicrous, absurd to put all my hope, all my stock in this invisible God who I have never, ever heard speak to me the way Allistaire does.  On one hand, I seem out of my mind and all anyone can offer me are more of those limp, powerless, “good thoughts.”  But.  I have tasted of The Lord.  I have heard His voice.  I have seen Him.  You cannot possibly believe me until you too have tasted of His glory.  And then you will know.  And then you will find that remarkably, you can smile even as tears stream down your face, because you know that He is up to something.  No you cannot see it fully.  You do not understand it.  But you have grasped onto and are being held onto by the Living God of the Universe – He who spoke it all into being.  And you yield and you say yes and your heart breaks and you look for light on the horizon because you know it is coming.

The above was my life from 6am to 11am yesterday.  In rounds, Dr. Andrews said he was not concerned about the blasts.  He said that sometimes the marrow is just working so hard to make cells that it is pumping out really immature cells of all kinds.  When the blasts appeared there were also promyelocytes, myelocytes, metamyelocytes, and bands.  These are all different types of immature white blood cells and while they are usually only found in the bone marrow, when the new marrow is working so hard, they may appear in the peripheral blood as well.  He said he would go talk with the pathologist and get back to me as soon as possible.  When he returned, he relayed the news that the pathologist says the cell looks normal under the microscope and it is only one blast cell, despite the CBC showing a blast count of nine.  Only Flow Cytometry can ultimately tell whether or not the cell is leukemic, but because of all of the other indications that all is well, no further testing was deemed necessary.

Today there are zero blasts and I pray to never see them again.  Every day receiving the labs will be challenging.  But, in contrast to the fear of the worst, is the ever amazing improvement of Allistaire.  Her ANC was 300 this morning, platelets 78 (up from 34 several days ago) and her hematocrit is 32.7 (up from 30.9).  Her mucositis seems to have disappeared along with all the goopy towels, throw up bowls and strings of slime.  She opens her mouth wide for teeth brushing and has even eaten a little including peach yogurt at the moment.  She has taken her one by mouth med, Ursodial, twice and pooped once (first time in a week).  She continues to ride her bike and walk laps around the Unit and has painted twice.  There has been lots of playing ball and an entire 30 plus minutes of joyful engagement with Annie, the music therapist, who has not been welcomed in by Allistaire since her birthday in March. We are two days into tapering down her Diladid drip.   Her blood pressures are improving.  She is coming back to herself.  It is the absolute best!  Even the yucky skin in Allistaire’s arm pit and back where she had focal radiation is getting better.  The weird bronze of her hands and around her neck is beginning to peel and go away.  She is healing up.

I end this Fourth of July with the luxury of having my greatest immediate sorrow be the fact that I am eating the same Starbucks salad for the fourth day in a row.  I fantasize about potato salad and every sort of tasty grilled thing I can imagine.  I think of all the last many years spent in Bozeman on July 4th and the tasty baked treats my sister-in-laws would have brought up to the house.  I think of Jensy out in the grass, creating the fireworks show for us.  Maybe next year. IMG_3131 IMG_3135 IMG_3142 IMG_3151 IMG_3159 IMG_3164IMG_3169 IMG_3173 IMG_3175 IMG_3181 IMG_3184 IMG_3186IMG_3189 IMG_3191 IMG_3192 IMG_3197 IMG_3198 IMG_3200 IMG_3202IMG_3209 IMG_3214 IMG_3217 IMG_3219

9 responses »

  1. I pray that all labs continue to improve along with Allistaire’s health! God bless you all as you pass the minutes and hours that must seem to crawl in agonizing plodding slowness. Hugs and prayers from Laurel, Montana!

  2. Yes, next year! We are at Jefferson Island and I was thinking yesterday about our dinner with you guys and Matt and Julie here, watching all of our girls play. I cannot wait to do that again! I saw a mama moose with two babies and took it as a happy sign. May those labs continue to show that that strong, experienced 37 year old European marrow 🙂 is working hard to produce all the right cells, cells that can crowd out and obliterate the cancer.
    Rowan is looking at the pictures of Allistaire with me and says “I hope you’re back soon and I hope that you are going to be fine and won’t need any more shots.” And “to make her laugh” she says, “doodle bugs, flower bump, dango wango bango shump.” A good dose of silly can’t hurt!
    Sending lots of love.

  3. Jai, I have been following for a few months now. I don’t know if we ever met when you were at TMC, but we have mutual friends. I am so blessed, challenged, encouraged every time I read. I have been praying fervently for you and your sweet Allistaire. Having gone through something similar I can relate, yet now I have been in that “new normal” for 6+ years and as I read, I think. ” I remember that, and I didn’t want to forget that, yet I have….” Thanks for being so transparent with all your thoughts, they are helping me to remember what God did and continues to do even though I have returned to “normal”. I will continue to pray, praying that His grace will overflow as you take each new day and the joys and challenges that it holds. Praying Allistaire will stay on the road to recovery and that you will enjoy your next 4th of July at home with your sweet girl!

  4. Thank you for sharing the wrestling. It is so hard and deep. But it is encouraging others in their own wrestlings. Praying for your sweet girl and your family.

  5. Jai,
    It’s Brenda (7-11 from Island Lake). I have been following your blog because of Jenny Ivester, but somehow I just learned yesterday that Allistaire is your little girl. I had not recognized you in the pictures. She is absolutely precious and beautiful and I can tell her personality is amazing!!! Please know you and your family are in my prayers and I look forward to seeing how God continues to be glorified through her life. Your candidness in your writing of your experience is inspiring! I pray for peace, strength, perseverance and many moments of “good” amidst it all.

    Take care friend,
    Brenda

  6. As I looked at the photos of the sores from treatment tears flowed freely from my eyes, I stopped at each photo and prayed for pain free healing… I was thrilled to read that things are looking up… Praying for swift and total healing.

    Hugs and Love from Kathy.

  7. Is the address still correct to send packages/mail to that you have posted on the blog?

    I started following little Allistaire’s story a few weeks ago…praying for her healing!

    Kristin

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