Under Consideration

It’s 2:38am.  My heart is heavy and I can’t sleep.  So rather than just lie there, I decided to ask for prayer and spend some time in the Word. 

I let a few know this past afternoon that my transplant team contacted M-47.  He said that he would "take it under consideration."  :/  While I understand that this is a big commitment on his part, it was discouraging to hear that these considerations had not already been made.  He is tentatively scheduled for an information session next Tuesday, April 3, and a physical exam April 4, contingent on his answer on the 3^rd.  Please pray that God would touch his heart and mind toward this gift. 

I also have several unspoken requests.  He knows.  I ask you to kneel with me to leave them at His feet.

“Do not let your hearts be troubled. Trust in God; trust also in me.”

John 14:1

“Peace I leave with you; my peace I give you.  I do not give to you as the world gives.

Do not let your hearts be troubled and do not be afraid.”

John 14:27

“The LORD is my rock, my fortress, and my deliverer; my God, my strength, 
in whom I will trust; my buckler, and the horn of my salvation, and my high tower.”

Psalm 18:2

“What time I am afraid, I will trust in thee.  In God I will praise His word, 
in God I have put my trust; I will not fear what flesh can do unto me.”

Psalm 56:3,4

“You will keep in perfect peace those whose minds are steadfast, 
 because they trust in you.  Trust in the LORD forever, 
for the LORD, the LORD Himself, is the Rock eternal.”

Isaiah 26:3,4

“Fear not, for I am with you.  Do not be dismayed.  I am your God.  

I will strengthen you; I will help you;

I will uphold you with My victorious right hand.”

Isaiah 41:10

“Give all your worries and cares to Him because He cares for you.”

1 Peter 5:7

“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”

Philippians 4:6-7

 Amen.

Step One - Success!

Once again, I am (practically) speechless!  We went back to MD Anderson today for the results of my bone marrow biopsy and to discuss the next step.  “Flow cytometric immunophenotyping of the bone marrow aspirate is negative for minimal residual chronic lymphocytic leukemia….”  In a nutshell, the Campath WORKED in knocking my leukemia down to nothing in one round!  Perhaps that is why I was so sick at the beginning.  It wasn’t just working at the peripheral level; it was busy working at the cellular level.

So what does this mean?  The transplant team will now contact M-47 in Europe to determine his schedule and availability for donating.  Once that is arranged, they will set the date for my transplant.  Until then, I can give my body a rest from Campath and Neupogen.  If M-47 is planning a lengthy vacation or something, we might have to revisit that decision.  For now, I am still immuno-compromised and it was emphatically communicated that I must behave! 

Dr. Shah said that I continue to be an anomaly.  Everything about my disease has been unique.  It is extremely rare for one round of treatment to knock the 80% diseased marrow down to 0.  This is a direct answer to prayer!  I am doubly blessed because this allows us to maintain a full arsenal of weapons to wage war against the leukemia if or when it relapses.  Most folks have to utilize many of their chemo darts just to get into remission.  And the less my body is worn down by drugs, the better my chance of transplant success. 

The question has been posed as to why I still need a transplant if my leukemia was knocked out.  The answer goes back to my 17p deletion, and other negative prognostic factors.  While I am in remission now, it won’t last for long.  So for a longer-term fix, the transplant is the only answer.

Once the date is set, the ten days prior to transplant will be spent in the hospital receiving the conditioning regimen (also referred to as "killer chemo").  Dr. Shah has decided on FBR.  I wrote about the various options months ago.  As a reminder, FBR stands for Fludarabine, Bendamustine (also known as Treanda), and Rituximab.  Even though there are some horrid side effects, mostly for the first two, I may not lose my hair after all!  And I was already prepared!!  :)  Good thing Paul didn’t shave his head too soon!

I know it sounds funny to be this giddy about a soon approaching transplant.  But today felt like a confirming word from the Lord that everything is going to be fine.  We are wrapped in His loving arms as He holds us up, holds us together.  Emotions have traveled up and down and will certainly continue.  But to have such a miraculous answer to prayer is simply that…a miracle.  As I said when my perfect match was found, we pray expectantly and are then surprised when it happens! 

Thank you for your faithful prayers!  While we understand that this is still just the first step, He is paving the way before us, and we trust Him to carry us through.

Good News/Bad News

Many times over the years, I’ve heard Christians say that the Good News is only good because the bad news is so bad!  Simple, yet profound.

Throughout my CLL journey, I have seen many correlations between the physical and the spiritual.  This concept is no exception.  Without having received the bad news that I have the most aggressive type of CLL, the good news that a stem cell transplant could provide a second lease on life would not have been pertinent. 

If we were not sinners permanently separated from God with no hope of accessing Him on our own, the good news of salvation through Jesus would be a waste of time. 

“This righteousness is given through faith in Jesus Christ to all who believe.

There is no difference between Jew and Gentile, for all have sinned and fall

short of the glory of God, and all are justified freely by his grace through the redemption 

that came by Christ Jesus.  God presented Christ as a sacrifice of atonement, 

through the shedding of his blood—to be received by faith.”

Romans 3:22-25

“As it is written: "There is no one righteous, not even one.”

Romans 3:10

“Nor is there salvation in any other, for there is no other name under heaven 

given among men by which we must be saved.”

Acts 4:12

“For it is by grace you have been saved, through faith—and this is not from yourselves, 

it is the gift of God— not by works, so that no one can boast.”

Ephesians 2:8-9

“Jesus said to him, ‘I am the way, the truth, and the life. 

No one comes to the Father except through Me.’”

John 14:6

I have been reading several books by Robert Whitlow.  I am currently reading The List.  A young attorney (read the book for background:) is being drawn to the Lord while being drawn away by an unseen evil.  He had been reared in a home that “went to church” some.  But he came to realize that knowing stuff about God is not the same as having a personal relationship with the God of all. 

It equates to my transplant.  I can study and learn all about allogeneic stem cell transplants, but until I actually experience one, it will just be head knowledge.  The only way that the transplant can save my life is to have one.  Just reading about it won’t work. 

Yesterday, we went back to MD Anderson for my blood work, bone marrow biopsy, and to meet with the leukemia team.  We didn’t learn much other than whatever decision is made Wednesday regarding the timing of my transplant, I should expect to continue taking the Campath until the details revolving the transplant are complete.  That way I won’t lose ground.  Tomorrow we will find out the details.

I also learned that I am, indeed, still very immuno-compromised and need to be a good girl.  Even though the Neupogen increases my neutrophil count, my T-cells are being hammered by the Campath and I am at risk for infection.  So I will need to adhere a bit more strictly to the rules.  :/

Compared to the Good News of salvation, there are no guarantees with the transplant.  I am so thankful that with God, there are.

My sheep listen to my voice; I know them, and they follow me.  

I give them eternal life, and they shall never perish; no one will snatch 

them out of my hand.  My Father, who has given them to me, is greater than all;

no one can snatch them out of my Father’s hand.  I and the Father are one.

John 10:27-30

“In all these things we are more than conquerors through Him who loved us.  

For I am convinced that neither death nor life, neither angels nor demons, 

neither the present nor the future, nor any powers, neither height nor depth,

nor anything else in all creation, will be able to separate us from the love of God

that is in Christ Jesus our Lord.”

Romans 8:37-39

Think on these things.  Selah.

Fork in the Road

Today was the end of the first leg of my journey towards transplant, and we can see the upcoming fork in the road.  Monday, we head back to MD Anderson for a bone marrow biopsy and meeting with Dr. O’Brien and the CLL team.  Wednesday, we’ll get the results of the biopsy and meet with Dr. Shah and the transplant team.  At that point, the decision will be made whether to continue on the Campath road for another round or to take the path directly to transplant.  It all depends on the level of disease left in my marrow.  Having been near 80% diseased marrow, Paul’s bet is on another round of Campath.  I’m ready to move on.  But this part is not our decision.

The past week or so could be classified as “side effect of the day.”  Some days I would have a rash.  Others I would have some light nausea.  Many brought increased fatigue, intestinal distress, or a return of the headaches.  Some weren’t bad at all.  And none have been as bad as the first week!  So for that I am immensely thankful.

I have taken time to read.  (I’m on my third book in four weeks.)  I have talked and Skyped with my kids and grandkids.  I have spent quiet times with my sweetheart.  I had a wonderful visit from a dear friend.  (Love you, Cheryl!)  I have enjoyed several mornings with my cousins, Al & Bonnie, who live around the corner from where I get my shots.  And I even felt well enough last night for my mom and Maxine, her neighbor and buddy, to come over for dinner and a game of cards.  I was pretty pooped out by the end of the evening, but it was a nice tired.

I have come to care deeply for the team at the good doctor’s office.  They are not only efficient but also very compassionate and caring.  It was a little sad leaving today not knowing if I’d be back anytime soon.  I’m sure that the same level of connection will happen with my transplant team on MD Anderson’s 11^th floor.  Prayerfully, a year from now, these will be memories of a time when….  Memories that I will never forget.  Memories that will mold my future.

Steady As She Goes

This is a phrase indicating instruction from the captain to the helmsman of a ship to keep the ship heading steadily on the same course regardless of gusts of wind or cross currents.  That sounds like a fairly accurate description of where I am right now.  I have been steadily receiving my Campath injections for almost three weeks.  A sudden gust at the beginning of week two caused the captain to introduce Neupogen to help keep me on course without sinking the ship.  So far, so good.  My counts continue to climb back into the normal range.

The early onset of thunderous side effects has calmed.  The few that remain or that have recently appeared do not rock the boat like their predecessors.  The headaches are minimal, and I have had no further fever, chills or rigors.  Fatigue is still my daily companion accompanied by increased body/bone ache (due in part to the Neupogen).  The newest squall is a pesky rash, looking more akin to hives, which appears on my face and neck every evening.  Last night was the worst.  After dinner and visiting with Paul and his son Chris, I looked like I had the mumps.   I decided to take an oatmeal bath and soak my face!  I followed that with Aveno lotion, Cortizone cream, two Benedryls, and finally Benedryl gel, which brought the relief needed to sleep.  I should market the mix because this morning my skin looked amazing!  :)  But the rash will most likely return again this evening.  It’s the Campath.

I have been able to wrap my head around most everything we have learned and the choices that have been made on my behalf, but I have to admit that I have not been able to totally understand the relationship between Campath and Neupogen. The goal of Campath is to knock down the leukemia and get me into remission. The Neupogen’s role is to salvage my neutrophils in order to keep my ship from sinking while the hull is being cleaned. My concern was whether or not the Campath could be as effective in its destroying if the Neupogen was rebuilding at the same time. I also wasn’t certain if my increased numbers meant that I was no longer immunocompromised. While I trust the doctors’ judgment, I just needed to understand. Dr. O’Brien’s PA, Jill, emailed a response to my question. “The Campath targets the lymphocytes, and the Neupogen builds the neutrophils, so unrelated to each other (even though they both are part of the white blood cells). Yes, you are still very immunocompromised because of the Campath. More for viral-type illnesses which is where the lymphocytes are important.”

OK.  Good enough.  While the Campath does lower all my numbers, not just my lymphocytes, it’s an answer I can wrap my head around.  

So we will continue sailing through another week of Campath and look forward to my bone marrow biopsy on March 26 to see what kind of damage it did there.  No worries.  We want it to have done some damage!  If it has successfully knocked down the bad guys, we will get ready to proceed to transplant.  If it’s working but still has more to do, then we will hoist the sail for another four weeks.  Whatever the case, the waters are less choppy than before and we are trusting Him to see us through.

“Then they cried out to the LORD in their trouble, 
and He brought them out of their distress.  

He stilled the storm to a whisper; the waves of the sea were hushed.  

They were glad when it grew calm, and He guided them to their desired haven.  

Let them give thanks to the LORD for His unfailing love and His wonderful deeds for men.

Psalm 107: 28-31

A Complete 180

For all of you who prefer Paul’s shorter posts, I am providing one today.  :)  By God’s grace and your faithful prayers, I feel a hundred times better than I did last week.  I have not had any further fevers, chills, rigors, or nausea, and the headaches have been held to a minimum.  I’m still tired, and I still have to behave :/, still need my naps, still have to take all my meds, still can’t go a lot of places or be around little ones, but this is the best I’ve felt since before I started the treatments.

My numbers have come up steadily this week (from 0 to 1 to 2).  And so far, I have not had a reaction to the Neupogen.

God is good.  He was good last week too, even though I felt so bad, because He carried me through.   It gave me an opportunity to see just a little of what the transplant process and side effects might be like.  He is preparing me for what is to come.  Thank you, God, for this week’s respite!

"Praise the Lord; praise God our Savior!  For each day He carries us in His arms."

Psalm 68:19 NLT

Back on Track

Because my counts were too low for me to get a Campath injection on Monday, the office of the good doctor conferred with MD Anderson to decide whether or not to re-start my ramp up doses (since today was 7 days since my last injection) or to continue at 30 mg or a reduced dosage.  The decision to add Neupogen, which helps rebuild the neutrophils, also came into play.

Late yesterday, we learned that we would resume the 30 mg injections and add a Neupogen injection every time I get the Campath or until my neutrophil numbers have risen to the desired level.  Much of this morning was spent reviewing the insurance vs. out-of-pocket expenses for the pricey Neupogen.  We finally helped them realize that by the time we pay for the Campath, my deductible will have been met and it won’t really matter.  The Neupogen will be covered.  Just give me the shot.

My numbers had gone up a little.  But that little amount (WBC up from .76 to 1.38 and Neutrophils up from .54 to .97) was enough for me to get my Campath and wait until Friday to start the Neupogen.  I did have to have the IV Benedryl today :( but that should be the last time.  It hurt more today, and I have a bruise.  Friday, I will take my Benedryl by mouth on my way to the office.  So we are back on track.  

So in a nutshell, perhaps a big nutshell but nutshell nonetheless, the Campath does such a good job killing my white blood cells that I will have to take Neupogen injections every time Campath knocks them down.  I have been taking Tramadol to counter the bone and body aches.  Since the main side effect of Neopogen is more intense bone and body aches (because it pushes my bone marrow factory to work harder), I am hoping that my Tramadol works overtime.  Because my immune system is in the dirt, I will continue taking Valcyte to guard against viral infections and Bactrim DS to ward off bacterial infections.  Since most all of these, especially the Campath, cause severe headaches, I will continue taking Flexeril to help me relax and Maxalt to fight the ones that just don’t want to go away.  When all of this makes me nauseated, I will rely on the Phenergan.  Then, of course, I can take all the Tylenol and Benedryl I would like to cover the itching, sleeplessness, rash, and any other pain that hasn’t been covered.  I think I got them all.

Where is my card table?!