A Most Disappointing Time

If there was a theme for Oct. 4, 2015 it would be: Disappointment

I just learned that a week worth of preparation and two hours of recording time at WJR doing our show (The Internet Advisor) were absolutely for nothing.  Incredibly both the recording of our show and even more amazingly, the standard backup recording of all airplay on WJR were LOST!  The system simply failed to work and either destroyed or never recorded all that lovely conversation and work that went into that show including an excellent interview with an authority on searching in California.

This was also the day that I installed El Capitan, the new OSX 10.11 operating system from Apple only to find that it completely disabled my recording software!  This required rolling back the system and restoring the previous OS which took approximately three hours.  A project that was supposed to be finished tonight will now be squeezed into tomorrow.

The final brick in the wall of disappointment is that I am not doing well physically.  My hemoglobin is falling through the floor and rather than improving during the last months of treatment, it has been deteriorating to around 8.3g/dL (your normal is between 12-14). My fatigue level is around 7 on a scale of 1-10 and I am either falling asleep constantly or feeling winded whenever I get up and try to walk around.  On Tuesday I see my oncologist to evaluate the treatment with this latest drug, kyprolis, (failed) and explore other treatment options possibly with a new doctor since my oncologist, Dr. Shurafa, has reduced his caseload to two days a week on his way to retirement.  I represent one of his "failures".

I could go through a litany of disappointing things about my body, mind and spirit that are frightening me as my body deteriorates.  The skin on my legs is mottled and blotchy because of constant swelling as my heart is less efficient moving fluid around my body.  Arms that once were taught with muscles are wrinkled and limp.  The mirror has become my enemy.

I promised that I would not pull punches from now on.  If anything, I want you to understand what is going on in the mind and spirit of those around you who appear weak or fragile.  For many of us it is an unfolding horror show that we watch helplessly from the sidelines all the while feeling no different inside than we did when we were 31.

So how do I deal with this?  I have found a soulmate in the psalms specifically Psalm 71.  Take time to read it and I hope you will see how honest it is in terms of describing what it is like to grow old, feel broken and persecuted and yet to remain hopeful.

Psalm 71 NIV

1 In you, Lord, I have taken refuge;
    let me never be put to shame.
2 In your righteousness, rescue me and deliver me;
    turn your ear to me and save me.
3 Be my rock of refuge,
    to which I can always go;
give the command to save me,
    for you are my rock and my fortress.
4 Deliver me, my God, from the hand of the wicked,
    from the grasp of those who are evil and cruel.

5 For you have been my hope, Sovereign Lord,
    my confidence since my youth.
6 From birth I have relied on you;
    you brought me forth from my mother’s womb.
    I will ever praise you.
7 I have become a sign to many;
    you are my strong refuge.
8 My mouth is filled with your praise,
    declaring your splendor all day long.

9 Do not cast me away when I am old;
    do not forsake me when my strength is gone.
10 For my enemies speak against me;
    those who wait to kill me conspire together.
11 They say, “God has forsaken him;
    pursue him and seize him,
    for no one will rescue him.”
12 Do not be far from me, my God;
    come quickly, God, to help me.
13 May my accusers perish in shame;
    may those who want to harm me
    be covered with scorn and disgrace.

14 As for me, I will always have hope;
    I will praise you more and more.

15 My mouth will tell of your righteous deeds,
    of your saving acts all day long—
    though I know not how to relate them all.
16 I will come and proclaim your mighty acts, Sovereign Lord;
    I will proclaim your righteous deeds, yours alone.
17 Since my youth, God, you have taught me,
    and to this day I declare your marvelous deeds.
18 Even when I am old and gray,
    do not forsake me, my God,
till I declare your power to the next generation,    your mighty acts to all who are to come.

19 Your righteousness, God, reaches to the heavens,
    you who have done great things.
    Who is like you, God?
20 Though you have made me see troubles,
    many and bitter,
    you will restore my life again;
from the depths of the earth
    you will again bring me up.
21 You will increase my honor
    and comfort me once more.

22 I will praise you with the harp
    for your faithfulness, my God;
I will sing praise to you with the lyre,
    Holy One of Israel.
23 My lips will shout for joy
    when I sing praise to you—
    I whom you have delivered.
24 My tongue will tell of your righteous acts    all day long,
for those who wanted to harm me
    have been put to shame and confusion.

Ex Profundis

Psalm 130

A song of ascents. 1Out of the depths I cry to you, Lord; 2Lord, hear my voice. Let your ears be attentive
to my cry for mercy.
3If you, Lord, kept a record of sins, Lord, who could stand?
4But with you there is forgiveness, so that we can, with reverence, serve you.
5I wait for the Lord, my whole being waits, and in his word I put my hope.
6I wait for the Lord more than watchmen wait for the morning,
more than watchmen wait for the morning.
7Israel, put your hope in the Lord, for with the Lord's unfailing love
and with him is full redemption.
8He himself will redeem Israel from all their sins. 

##################

It is ironic that a recorded book should be the final nudge.  JA Jance is one of our favorite mystery writers and Ginny and I listened to the first in a series she wrote around a "new" character.  In the story the protagonist uses a blog as a way of journaling her life and finding expression for her thoughts during a particularly chaotic part of her life.

For the last few months I have been considering my "silence" over the last two to three years.  In the early years of my diagnosis of cancer (multiple myeloma, a form of blood cancer that is incurable but controllable to a certain extent) I was quite chatty.  I felt that I needed to share my journey in dealing with this dread disease and for the first three years things were relatively good.  It was easier to talk about the treatment process when it looked like we were holding the line against this greedy monster.  Then reality struck; shortly after I made a wonderful visit to my sister Hilary MacInnis'  house on Vancouver Island, BC. Ironically near the end of that visit my hemoglobin had begun to fall and I experienced an incident that I thought was some kind of heart attack.  It turned out to be shortness of breath and a-fibrillation brought on by a steep drop in my hemoglobin.  I was short of breath and fatigued more than usual.  After returning to the States I began a series of transfusions every time my hemoglobin dropped below 8 (yours should run around 13-14. ) To date I have had nearly 10 transfusions.

Simply put, the cancer returned with a vengeance and the effort to keep me drug free ended.  What then began were various attempts to put the genie back in the bottle including a stretch of using Thalidomide which ended last fall.  During the past 12 months I have had 8 transfusions  and am deeply grateful for all the people who have donated this precious gift of life.  The last treatment twist was to move me up to one of the newest drugs in the battle to stabilize my immune system: kyprolis/carphilsomib  given in conjunction with Revlimid and dexamethazone. 

I was initially very hopeful because the new combination had proved to be the silver bullet that drove a  number of refractive patients like me into near remission.  It has not been the case for me and this past week's transfusion was the final stake in the heart of that solution as far as I am concerned.  I at this point have no idea what  is next and my doctor is in fact considering handing me off to one of his younger colleagues who has been working  with some of the more advanced treatment combinations. The underlying problem, however, is that I am non-secretory, i.e. the "normal" markers for the disease do not show up in my blood.  So I'm on the playground with my own ball and no one wants to play.

And the point is???

You may have noticed the phrase "initially very hopeful" and that is the crux of the matter.  Hope is harder to get hold of as the time goes by.  It is much easier to reflect on God's purposes when the game is going in your direction; it takes something else to hang on and declare with David, "…yet will I praise Him.." when you find yourself rubbing elbows with road kill.  What kind of edification is there is discouragement?

And that is how we come to this point.  I have been feeling the urging of the Lord to pick up the story again and to tell it like it is, warts and all.  I have felt a growing distance from Jesus and a rich vein of resentment that is easily tapped.  Of course, the sane, saved part of me knows that this is crazy, childish and all too human.  While I find myself a committed opponent of the theology of "cheap grace", I also find myself desperately clinging to the fact that I am "saved, sanctified and filled with the Holy Ghost" regardless of my feelings of alienation from that same unqualified source of love and acceptance.

Ex profundis clamavi ad te dominem. Domine, exaudi orationem meam. Ps 130:1-2

Hope I got the Latin correct Fr. North!  "Out of the depths I cry unto thee O Lord.  Lord, hear my prayer."  My thoughts may not be particularly enthusiastic or edifying, but they will the honest ramblings of one who finds himself deeper in the Valley of the Shadow of Death than before and looking urgently for signs of the Good Shepherd.

This is my journey; this is my story.

Foster