Sudden Disappointment

This was supposed to be a positive and thankful posting...and it was going to be that until a phone call at 5:30 turned the tables on me.

This afternoon we met with Dr. Lebovic, my new oncologist, for the first time since I have started on the newest chemo drug Pomalyst, specially formulated for people for whom at least two other therapies have not worked (c'est moi).  Hope was high that we would see improvement and when the blood test came back the numbers seemed to support that.  In particular, my hemoglobin was 9.1 which was up although my platelets were down in the mid 30's which was not good.  All in all the sense was that we would continue for the rest of the three week period taking the new drug and then evaluate the progress.  We left happy that we were on the right track.

Then just a few minutes before we were due to leave for a special Gilda's Club meeting tonight I got an unexpected phone call from Dr. Lebovic. Seems he was going over his charts as he does at the end of the day and noticed that we had been looking at the wrong numbers, readings from last week's blood work and in fact that the real reading for today was much worse!  As a matter of fact my hemoglobin had fallen from 9.1 to 8.4 and, worst of all, my platelets were at 27 or dangerously low.  As a result, he ordered me to stop taking the Pomalyst immediately and get off Eliquis, my blood thinner, because at this rate the cancer was thinning out my blood pretty well on its own and I had not had a blood clot before anyway.

I will follow up next Monday with further blood tests and a consultation with Dr. Lebovic and we will talk about next steps.  He feels that he can tell the effectiveness of a treatment within the first and second rounds which is much faster than the drug company told me (3-6 months).  In any case if this keeps on hammering my hemoglobin down, I will be in line for a transfusion soon although Dr. L has not spoken about that.  Basically I am heading back to huffing and puffing and being super susceptible to infections which I have miraculously avoided in the meantime by the grace of God.

I have to confess that my mood changed in an instant from hopeful to scared and disappointed after that call.  I had hoped that this newest kind of chemo would mean finally turning a corner toward remission.  This is the fourth form of chemo that has (or seems to be) failing to turn the disease around. Revlimid and Velcade had initially put me into complete remission within two months in 2009 but proved unable to stop the cancer as it returned in a mutated form in 2012. Later that year Thalidomide was tried and failed to bring a halt to the deterioration in my hemoglobin and platelets in particular.  Carfilzomib was one of the newest drugs for people with resistant disease and it was tried until early this fall when it was declared useless.

Then Dr. Shurafa handed me off to his excellent young partner Dr. Lebovic who was involved in much of the research into Revlimid and Velcade and is up on all the latest treatments.  He immediately prescribed Pomalyst (Pomalidomide) and I began taking it with much hope nearly two weeks ago.  So you can see why I am so discouraged to have this newest procedure halted while the readings are going down so quickly.

Part of the heaviness I feel is that this is close to the cutting edge of treatments and it appears to have failed so quickly.  In all honesty, I am running out of options and hope in treatment, which brings me back to the beginning: My hope in God.  I have already passed from death to life through the grace and mercy of God through faith in the finished work of salvation in Jesus death and resurrection.  I was just reading the other day Paul's remarkable death sentence on death in 1 Cor. 15

 54When the perishable has been clothed with the imperishable, and the mortal with immortality, then the saying that is written will come true: “Death has been swallowed up in victory.”^h55“Where, O death, is your victory?Where, O death, is your sting?”ⁱ56The sting of death is sin, and the power of sin is the law. 57But thanks be to God! He gives us the victory through our Lord Jesus Christ.58Therefore, my dear brothers and sisters, stand firm. Let nothing move you. Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain.

So what are we to do in the meantime?  Stand firm; don't let this fear of death freeze you. Keeping moving and working for the kingdom of God because nothing you do there goes for naught.  It's the best I can do for right now and hopefully the busy work of preparing for Thanksgiving will keep me occupied. I look forward to a joyous gathering of our extended tribe at the Episcopal camp in Brighton on Thursday and Friday.  I pray that you and I will find many blessings to count in the midst of our challenges and sorrows and know that "...all things work together for good for those who love the Lord, and are called according to His purposes." Rom. 8:28

Foster

 

WTD?? -What’s That Doc??

In a strange new twist of “I have good news and I have bad news”, we received our latest report on my cancerous condition.

1. The Good News: It appears that the drop of 60% Myeloma to 20% was in fact correct.  That means that despite the continual slide of my hemoglobin and platelets, It appears that the months of infusions with Kyprolis actually did reduce the amount of multiple myeloma in my bone marrow very significantly.  The uneven results with the hemoglobin and platelets are most likely side effects of Revlimid, one of the key drugs in my treatment package.
2. HOWEVER The not-so-good news: My blood sample taken today show that after a month off of treatment my hemoglobin had fallen from 8.4 to 7.6!  and the platelets were at a lousy 34.  You don’t want to know what “normal” is. Because these readings were so low, I had another blood draw in honor of Halloween right away today and the hemoglobin showed 8.1 and the platelets were higher but they normally do a manual count which they passed on in order to get the results to us quickly.

The weird thing about all of this is that I normally have felt really lousy in the past when my hemo dropped that low.  Shortness of breath, lack of energy etc. and I was not feeling any of those side effects.

So Dr. Lebovic decided to do the following:

1. He scheduled a PET scan to get a better view of where the cancer is most active in my body.  I HATE PET scans because they require me to be shoved into the claustrophobic tube for most of an hour.  I wish I could handle it like my friend Lisa who said that she just spent the time praying.  I did too…for it to stop!  Not quite as useful.
2. I will begin a new cancer regimen with a drug called Pomalyst in a couple of weeks.  I trust Dr. Lebovic on this choice because he is uniquely qualified to deal with the more refractive (unresponsive) cases of MM, like mine.  Here is the description from the drug company (Celgene)  ***warning reading this may scare the bejeebers out of you *** 

POMALYST® (pomalidomide) is a prescription medicine, taken along with the medicine dexamethasone, used to treat people with multiple myeloma who have received at least 2 prior medicines to treat multiple myeloma, including a type of medicine known as a proteasome inhibitor and lenalidomide, and their disease has become worse during treatment or within 60 days of finishing the last treatment. It is not known if POMALYST is safe and if it works in people under 18 years of age. (lucky me; I’m over 18!)

The positive side of this is that the treatment will simply mean taking one pill every day for three weeks with one week off along with the steroid dexamethasone.  I will however have to go into the clinic for a blood sample once a week for the first month to closely monitor the drug’s impact on me.

So we are off on a new and prayerfully hopeful journey that will finally bring the MM into submission.  We have loved and appreciated Dr. Shurafa and all the wonderful angels/nurses who are part of the infusion center.  We are however, hopeful that Dr. Lebovic will be able to lead us into a new path toward remission or at least greater control of the disease.  We do draw some comfort from the fact that according to the last bone biopsy the MM had lessened.  We are even encouraged that the current drop in hemoglobin and platelets means that without treatment the disease would rage out of control.

Once again thank  you all for  your continued love, support and encouragement.  God has placed me on this path for His own reasons and I rejoice at knowing He will use me if I just let Him, even in the Valley of the Shadow of death.  

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.

What a Fellowship!

What a fellowship, what a joy divine,

Leaning on the everlasting arms;

What a blessedness, what a peace is mine,

Leaning on the everlasting arms.

Lyrics, What a Fellowship,

Elisha A. Hoffman, pub.1887

Deuteronomy 33

27 The eternal God is thy refuge, and underneath are the everlasting arms: and he shall thrust out the enemy from before thee; and shall say, Destroy them.

What a fellowship we enjoyed Aug. 25 at Katie Carollo's family "hotel" on Harsens's Island north of Detroit on the St. Mary's River.  As always it was a memorable time.  One thing struck me above all else as we gathered to sing old songs of faith like the one above and to remember the people who no longer gathered with us in flesh as well as spirit.  It struck me with great force that we were ALL gathered in a marvelous fellowship that afternoon. Jesus declared that "Where two or more are gathered in my name, there am I in the midst of them.:" Matt 18:20  We certainly were gathered that way on the  Island and those who have gone before us to heaven are joined with the resurrected Jesus around God's throne.

So what's the big deal?  Obviously we are an older group of people (average age around 68) and many of us have lost spouses and dear friends during the past years. The naked truth is that some of us live on a rather thin edge and could face death much sooner than later.  However, instead of inspiring fear, there is a rare comfort in knowing that our fellowship will not be threatened or reduced in all reality by our deaths, but rather COMPLETED by death as we enter that perfect place of fellowship with Jesus and all the saints along with the Church here on earth.

It is at this point that I hear a ringing taunt that Paul the Apostle hurled in Satan's face.

“Death has been swallowed up in victory.”[c]

55 “Where, O death, is your victory?

    Where, O death, is your sting?”[d]

56 The sting of death is sin, and the power of sin is the law. 57 But thanks be to God! He gives us the victory through our Lord Jesus Christ.

It is almost ironic that someone who faces a diagnosis of incurable cancer should find such comfort in being among all these wonderful people many of whom have been touched by death.  Like many Christian funerals I have attended there is a genuine sense of joy and comfort knowing that death is a door and not a destination. "Where O Death is your victory?"

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