6:17 am...

   

     It's early, 6:17 am to be precise and yet, sleep is elusive this early dark morning.  I've been lying in bed for an hour now and savoring the feel of my husband's hand in mine (he probably didn't even know he was holding my hand - I'm sneaky like that) and listening to the breathing of our baby, her soft sighs and occasional rustling in her basket are comforting sounds.  Tonight was peaceful, not like the previous one when the kids seemed to sense our own restlessness, our own dreads, our own fears sweating out of our pores, and they were up every two hours like clockwork, then a bottle, then a wet bed.  I will admit to being a bit of a pessimist (?) at times, knowing that in our hearts we were restless because we were waiting - back to waiting, waiting to know what the CT has shown, almost not daring to hope, praying for peace, for miracles, for calm, for the ability to rest in the Lord.  Yet fears creep in, doubts tug at our minds, fear of the unknown, of growth, of the uncertainty of battling this evil disease, this reminder of the darkness in the world, in our souls, lurking in the inner part of me.
I will share with you the song that was going through my head last night...it came to me as I laid my weary, overwhelmed head on my pillow and repeated over and over.  It's at the bottom of this post... I pray that you may read it too - it's not got all the answers but it echos the cries of my own heart and soul.
     Many prayers have been going up for us in this week of waiting, of anticipation and for that we are truly grateful.  As always we are overwhelmed and encouraged by the support of our community, our friends, family but also a much wider global family and we know that God has provided that for us too - much has been given us to bear but we know that we can also share that burden with many to help lighten our load in small and big ways, never fully taking that burden, but knowing that we are supported.  And yet, it's hard to break the news, to share the results, to divulge the secrets that have been revealed by the CT.  We prayed, for a miracle, for healing, for a shrinking of the cancer, for good news, for peace.
     I will share with you the words i recently read in an article in the New York Times by a professor with stage four colorectal cancer... her words echo my thoughts almost exactly..as a perspective, she got it bang on. 
     EVERY 90 days I lie in a whirling CT machine, dye coursing through my veins, and the doctors look to see whether the tumors in my liver are growing. If they are not, the doctors smile and schedule another scan. The rhythm has been the same since my doctors told me I had stage IV colon cancer two and a half years ago. I live for three months, take a deep breath and hope to start over again. I will probably do this for the rest of my life. Whatever that means.

When my scan is over, I need to make clear to my friends and my family that though I pray to be declared cured, I must be grateful. I have three more months of life. Hallelujah.

So I try to put the news in a little Facebook post, that mix of sun and cloud. I am trying to clear the linguistic hurdles that show up on my chart. Noncurative. Stage IV. I want to communicate that I am hoping for a continued “durable remission” in the face of no perfect cure, but the comments section is a blurry mess of “You kicked cancer’s butt!” and “God bless you in your preparations.”

It feels impossible to transmit the kernel of truth. I am not dying. I am not terminal. I am keeping vigil in the place of almost death. I stand in the in-between where everyone must pass, but so few can remain.

     This morning, I feel raw, like a wound that was torn into our lives 8 months ago with the devastating news of the diagnosis has been ripped open again.   As we sat in the doctor's office yesterday afternoon, the wait seemed interminable.  At last, there the door opened and there he was.  Quickly sat down and opened my chart and started into the CT results immediately since "that's what you're waiting for".  And then the words... it's not the best results, unfortunately, and our hearts sank to the floor and melted.  We listened to him talk about the stability of the metastasis in the liver area (surprising given that that's where a lot of my discomfort is), the relative stability of the spots in the abdominal lining, all apart from one which seems to be growing, and then the last, bad blow, that the metastasis spots in the lungs had grown and in fact there were new spots.  All spots measured in millimetres but still growing, not stable, not under control, not responding to chemo well enough, ruining chances for surgery to cut out this monster.  It was not what we wanted to hear.  It's amazing and sad that millimetres are the measure of our success or failure.  Such a small, small increments and yet it means that the chemo we've been throwing at it the last months is not being effective in all areas.  So this means we will change up the chemo regimen.  We will now be on what's called second line treatment - the drug cocktail will change - we will lose the nasty drug that causes all the neuropathy symptoms of tingling, numbness and cold sensitivity (so long, farewell!) but gain a drug that causes more GI upset and from what I read, possible hair loss as well.  I'm sad about this - up til now, it's been easy to pretend in public that maybe I wasn't so sick when you have a head of hair to cover you up but to think that now I might have to think about things like wigs or hats or shaving my head - I know it's a vanity thing but I dread the looks of pity and askance glances from people in the stores or in public.  I know it means I would join the ranks of many others who are fighting this battle all around me and maybe I should be braver, but oh...
     There is an option before us for a clinical trial, all the way in Toronto, our care team would have to switch, there would be extensive travel, time away from family and home, and yet, you may or may not get the drug that is being studied - a type of stem cell inhibitor?  I'm not even entirely sure about what it does... but we need to make decisions sooner than later - to manage an interview, get enrolled in the trial, start the chemo will take weeks.  We are still discussing this option and are not entirely sure what to do at this point.  It will take more thought, research and prayer.  In my heart of hearts, I'm not inclined to enter into a gamble with my life and the precious time at home, but we are continuing to investigate.  It would be the same chemo offered here plus or minus another drug.
     The chemo, if we choose to stay in Hamilton, will still be every two weeks, with a baby bottle to take home.  There is an option to put back in the blood vessel growth inhibitor drug, Avastin, but we have to check to see if the insurance company will cover this option since the drug only offers modest shrinkage and improvement of survival odds.  Survival... why do I have to think of this?  Because now that we're on second line treatment, the odds of living to that magic five year mark are much diminished.  Oh true, we are not the ones who are in charge of numbering our days but data and studies and research are not too pretty when you are facing this disease.  We knew already from the beginning that survival numbers were grim but now, with numbers being shortened to a year, maybe two...
     The tears flowed openly and freely, several choice words were spoken, anger, fear, sadness, devastation.  Immediately my mind goes to my dear, dear family, my precious husband and friend, my dear, sweet girls.  I want to live, for them, for their future, for our future.  I want it to be our future...And oh, the sorrows that came from those thoughts...how can this be, God?  Have you not listened to us?  Have you not heard the prayers and cries of all of us? Why are things not working?  And the questions roll... and no answers are forthcoming yet...and yet we pray for peace, we pray for consolation, we know in the depths of our souls that God is the rock beneath everything, that there is a firm foundation but it feels that we're swimming out of our depth at this time and are barely staying afloat.  We have to remember Isaiah... that He will not leave our sides in the face of the flood or the fire or the cancer or the fear...

Psalm 102 English Standard Version (ESV)

Do Not Hide Your Face from Me

A Prayer of one afflicted, when he is faint and pours out his complaint before the Lord.

102 

Hear my prayer, O Lord;

let my cry come to you!

2 

Do not hide your face from me

    in the day of my distress!

Incline your ear to me;

    answer me speedily in the day when I call!

3 

For my days pass away like smoke,

    and my bones burn like a furnace.

4 

My heart is struck down like grass and has withered;

    I forget to eat my bread.

5 

Because of my loud groaning

    my bones cling to my flesh.

6 

I am like a desert owl of the wilderness,

    like an owl[a] of the waste places;

7 

I lie awake;

    I am like a lonely sparrow on the housetop.

8 

All the day my enemies taunt me;

    those who deride me use my name for a curse.

9 

For I eat ashes like bread

    and mingle tears with my drink,

10 

because of your indignation and anger;

    for you have taken me up and thrown me down.

11 

My days are like an evening shadow;

    I wither away like grass.

12 

But you, O Lord, are enthroned forever;

    you are remembered throughout all generations.

13 

You will arise and have pity on Zion;

    it is the time to favor her;

    the appointed time has come.

14 

For your servants hold her stones dear

    and have pity on her dust.

15 

Nations will fear the name of the Lord,

    and all the kings of the earth will fear your glory.

16 

For the Lord builds up Zion;

    he appears in his glory;

17 

he regards the prayer of the destitute

    and does not despise their prayer.

18 

Let this be recorded for a generation to come,

    so that a people yet to be created may praise the Lord:

19 

that he looked down from his holy height;

    from heaven the Lord looked at the earth,

20 

to hear the groans of the prisoners,

    to set free those who were doomed to die,

21 

that they may declare in Zion the name of the Lord,

    and in Jerusalem his praise,

22 

when peoples gather together,

    and kingdoms, to worship the Lord.

23 

He has broken my strength in midcourse;

    he has shortened my days.

24 

“O my God,” I say, “take me not away

    in the midst of my days—

you whose years endure

    throughout all generations!”

25 

Of old you laid the foundation of the earth,

    and the heavens are the work of your hands.

26 

They will perish, but you will remain;

    they will all wear out like a garment.

You will change them like a robe, and they will pass away,

27 

    but you are the same, and your years have no end.

28 

The children of your servants shall dwell secure;

    their offspring shall be established before you.