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.