Saturday, September 17, 2011

The Reality of Uncertainty

Yesterday I received a disturbing phone call from Dr. Gaw's office.  I was instructed to immediately stop the cellcept and to come to the office Monday to pick up more orders for blood work.  Kathy, one of the ladies who works in the office, didn't know why.  Dr. Gaw had just told her to call me with those instructions and to make sure I understood to stop the cellcept immediately.  He never makes knee-jerk decisions.  It's been my experience over the past 4 1/2 years that every decision he makes is very well thought out and carefully made.  I knew something had to be wrong with my blood work, so I called my homehealth to ask what the results were of the last lab work they did.  My white blood count is low, hematocrit level is low, hemoglobin level is 10.8 (12 is the bottom end of normal).  She said there were some other things out of range also.  My blood counts have to be monitored carefully.  Cellcept is risky.  Remember Dr. Gaw said told me multiple times, "This drug can kill you"?

I'm concerned.  Actually, I'm scared.  I have already exhausted every other treatment there is for CIDP.  My body just can't handle them.  Steroids make me literally crazy.  IVIG gives me chemical meningitis.  I kept getting infections with the plasma pharesis.  I almost died from one of those because it ended up in my blood stream  It took them days to figure out what antibiotic it would react to.  That left cellcept.  Even though it didn't put my disease in remission, it was believed to be keeping me status quo.  It has kept me being able to walk.  I don't know what will happen now.

Since my white blood cell count is lower than they would like for it to be, and I am currently running a fever, I'm stuck at home again.  I've already had strep throat recently and right now my ear canal is inflamed.

So that means I'm stuck at home again.  No getting out.  I'm sitting here right now in tears because I was suppose to attend a wedding today.  The girl who was my flower girl in my wedding is getting married.  It is breaking my heart I can't be there.

And it also means no church tomorrow.

I told Darryl this wasn't fair.

I wonder if the increase in my pain level, the coldness in my left leg and the increase in swelling in the left leg were all signs something was wrong with my blood levels?  We thought the swelling was due to the Lyrica.  Maybe it wasn't after all.

I am grateful I have an appointment October 13 with Dr. Peltier, my neurologist at Vanderbilt.

I was reading my devotion in Jesus Calling this morning and it says ...

"YOU WILL NOT FIND PEACE by engaging in excessive planning; attempting to control what will happen to you in the future.  That is a commonly practiced form of unbelief.  When your mind spins with multiple plans, Peace may sometimes seem to be within your grasp; yet it always eludes you.  Just when you think you have prepared for all possibilities, something unexpected pops up and throws things into confusion.

I did not design you the human mind to figure out the future.  That is beyond your capability.  I crafted your mind for continual communication with Me.  Bring Me all your needs, your hopes and fears.  Commit everything into My care.  Turn from the path of planning to the path of Peace."

1 Peter 5:6-7; Proverbs 16:9; Psalm 37:5

I am scared, and I seriously don't know what the next step is.  I'm a planner, and a control freak.  So how fitting is today's devotion?

I ask that you please pray for the Lord to make the next step very clear to my doctors ... to calm my fears ... for my blood levels to return to normal ... for my body to be protected from regressing.

We have talked about another option in the past.  We have talked about treatment with rituxan.  It's considered to be experimental to be given for CIDP.  Just like the cellcept, it has some serious risk.  I would also have to have another port-a-cath put in and I'd receive the treatment at the cancer center.  He has never given this treatment and would want it to be controlled by Dr. Peltier, and he would just oversee it here.  It's not an attractive option.

I know, that I know, that I know God is sovereign.

"For I am the LORD, I do not change" ~ Malachi 3:6

"For when my spirit was overwhelmed within me, Then You knew my path." ~ Psalm 142:3

"... Even from everlasting to everlasting, You are God." ~ Psalm 90:2 

"You will guide me with Your counsel, And afterward receive me to glory." ~ Psalm 73:24 

I am so grateful He loves me. 


  1. praying for you Robin. thank you for for sharing all about this. Thank you for reminding me that God is sovereign...I need that this week! :-)

  2. Praying for you friend! I am so sorry that you are having to go through this. I am so glad that God does not change and He is sovereign. What a great reminder. Praying for your fear and health, for your family, and for the doctors. I love you!!

  3. Robin, praying for you. Have you ever read any Nancy Guthrie? The way you write about our God reminds me of the way she writes about Him, too. :) I have a devotional by her called the One Year Book of Hope.

    Thank you, too, for reminding me He's sovereign & good & loving.

    'Behind a frowning providence He hides a smiling face.'

  4. Oh Robin! Thank you for sharing your heart and fears and trust in God. Thank you for being an example to all of us. We will be praying fervently for you. Pour out your heart like water before the Lord. "Earth has no sorrow, heaven cannot heal."
    Love you

  5. Robin-I am praying for you. It is so difficult to know you are suffering, but I am encouraged to hear you speaking the truth. If you need anything let us know. What am I saying?! You will stick it out...alright I am going to have to call you now. :) WE LOVE YOU ROBIN!!!!!

  6. Thank you all!

    Lacy, I have not, but the Wednesday bible study group is supposed to start "Hoping for Something Better" by her this week. I'm really hoping I get to do it.