Some Days, You Just Feel Weak and Afraid

Monday began as most of other recent Mondays have, labs, a bite to eat or a cup of tea depending on the time of day, then the check-in at the Stem Cell department to get my vitals then wait to see my PA, Mary and Dr. Shah.  Same thing every week.  But we don’t always get the same results.

Compared to other folks I’ve known or known of, I have done remarkably well with both of my procedures (SCT and CAR T-Cell).  My current side effects can only be classified as annoying compared to what many people have gone through.  But persistently annoying can wear on you after a while. 

So this week, Dr. Shah decided to try eliminating a couple of my drugs for a week to see if they might be the culprits.  If so, they will switch me to a different type.  I’m game.

Then Dr. Shah sat down and got that serious look again.  You would have to know her.  She is very vivacious and high energy.  She’s a great doctor for me!  :)  She might be a bit much for low-key people.  So anyway, when she gets quiet, I know something’s up. 

She had my bone marrow results.  Here’s the good news.  When I had the stem cell transplant, it obviously completely obliterated the 17p deletion issue.   This is excellent because she told me that without those results, I would be gone by now.  So thanks be to God for getting rid of the 17p deletion problem!

The not so good news is related to my 23 chromosomes.  I have 18 normal male (from my donor) and 5 abnormal female (from me).  No snickering in the peanut gallery!  The 5 abnormal do not even form any type of pattern right now and is nothing they have seen before.  Of course, it is!  And the MRD (minimal residual disease is higher in the marrow than it was in the peripheral blood.)

They are going to do another bone marrow biopsy on May 12 to compare to this one.  If the results are the same, then Dr. Shah wants to move forward with the DLI (donor lymphocyte infusion).  I’ve mentioned this before.  No chemo, just cells, probably quite a bit of GVHD.  They would contact my previous donor and see if he would be willing to donate a second time.  Please pray in advance about this.

Many of you have been so kind to tell me that I’ve been so brave, strong, such an example.  But today I feel weak and afraid.  I still know Who holds tomorrow.  I know He has a plan.  But today I am tired and am fighting feeling alone.  I want to feel like ME again!  I want to feel light and smile and feel the sun on my face. I want to run and not grow weary.  Shoot, I want to walk around the pond once and not grow weary!  I want to enjoy my husband, spend time with my grandchildren… preferably without a mask!  

“Because of the Lord’s great love we are not consumed,

for his compassions never fail.  They are new every morning; great is your

 faithfulness.  I say to myself, ‘The Lord is my portion; therefore I will wait for him.’ 

The Lord is good to those whose hope is in him, to the one who seeks him; it is good to wait quietly for the salvation of the Lord.” 

Lamentations 3:22-26

1. I know not why God’s wondrous grace
   To me He hath made known,
   Nor why, unworthy, Christ in love
   Redeemed me for His own.
   • Refrain:
     But “I know Whom I have believed,
     And am persuaded that He is able
     To keep that which I’ve committed
     Unto Him against that day.”
2. I know not how this saving faith
   To me He did impart,
   Nor how believing in His Word
   Wrought peace within my heart.
3. I know not how the Spirit moves,
   Convincing men of sin,
   Revealing Jesus through the Word,
   Creating faith in Him.
4. I know not what of good or ill
   May be reserved for me,
   Of weary ways or golden days,
   Before His face I see.
5. I know not when my Lord may come,
   At night or noonday fair,
   Nor if I walk the vale with Him,
   Or meet Him in the air.
6. Daniel W. Whittle, Pub. 1883