May 19, 2015

Why Wait?

Yesterday was a frustrating day at MDA. Results from my bone marrow biopsy were inconclusive on the day that we had thought that we would decide on the next steps in my treatment plan. Instead, we would have to wait until the cytogenetics (FISH) results came back and probably reschedule another BMB. :/

In addition to the delay because of incomplete tests, my new leukemia doctor had a conversation with my stem cell doctor and encouraged her to look at me from a different perspective. From a leukemia doctor’s perspective, I am not at a stage that he would recommend treatment. From a stem cell doctor’s perspective, I am relapsed, no longer in remission, and we need to fix that! I have leaned toward my stem cell’s doctor’s view because I like NOT having leukemia!! But after researching my most recent alternatives, the risks seem to far outweigh the benefits at this stage of the game.

The leukemia drugs have shown some positive results but come with some rather unpleasant side effects. The positive here is that you simply stop the drug and you stop the side effects. The negative is that it is not a “cure.” It is a help. It helps people stay alive with CLL, which is a good thing. The DLI (donor lymphocyte infusion) would provide a way back to remission, but the possible GVHD side effects cannot be stopped by taking something away. It’s like a runaway train. It can possibly be managed with steroids and other drugs. But it can be a lifelong issue or it can take your life. There is no way of knowing until you get there.

Those of you who have been following me from the beginning may remember that I had a unique negative “marker” originally called 17p deletion, which is what pushed us forward with the more aggressive treatment plan early on. It appeared that the transplant remedied that issue even though my CLL returned. However, we have recently been told that it might not be a certainty because they are only looking at very small percentages of my cells. They may have just not SEEN the 17p deletion yet. ☹ With that in mind, the recommendation is to “watch and wait” until my CLL grows or until my 17p deletion pops up again. At that point, there would be no question as to what to do. It would have to be the DLI.

I was reading an article this morning about relapsed CLL treatment options and it referred to the “watch and wait” course as “watch and worry.” I completely understand! While I have determined every day to lay this at the Lord’s feet, it does require a daily decision. Some days are easier than others. This has been a rough stretch. But I know that worry will not add a day to my life. (Matthew 6:27; Luke 12:25) So we will continue as we have…to take this one day, one prayer at a time.

“Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid.”
John 14:27

May 14, 2015

Keep Believing!

The other morning, I woke up and walked into the kitchen to get my coffee and found that my favorite wooden “Believe” plaque had fallen from the wall above my pantry door and shattered into several pieces. I was really sad. I have had that piece for quite some time and it was very special to me…for several reasons.

I texted Paul and told him, and he just said “I will fix it.” I told him that it was REALLY broken, but he said that he would do his best. Later that afternoon, I got home from the store and Paul had already gotten home from work and had my “Believe” sign patched up and drying in the garage. He said that we would have to wait and see how it turned out. Because it is a curvy piece, he couldn’t just clamp it like he does other pieces he works on. He had to hold it together gently and give it time to set before he could tape it together for the final drying time. It took patience. It took time. It worked. You can see where it was broken if you look closely, but I just touched it up with a little permanent marker and it is going back up where it belongs.

God is like that with us. We have fallen. We are broken. Some of us are in pieces. We look and think that there is no hope of ever being put back together. But God is patient. He holds us gently while He works with us. Then He gives us the time we need before setting us back out where we can feel mended and useful again. There may still be a few cracks, but that’s ok. God’s permanent marker works quite well. And those cracks are a reminder of what He has brought us through.

“May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope.”
Romans 15:13

“But these are written so that you may believe that Jesus is the Christ, the Son of God, and that by believing you may have life in his name.”
John 20:31

“Let not your hearts be troubled. Believe in God; believe also in me.”
John 14:1

“So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.”
Isaiah 41:10

May 13, 2015

Tough Choices

When I was a little girl, I used to love to watch the game show, Let’s Make a Deal, and the host would ask the contestant to choose between what was behind Curtain #1, Curtain #2, or what was in The Box. It was always a gamble. Sometimes they would get a car. Sometimes they would get a camel.

When I was first diagnosed, Paul and I were very confident about the direction we were going to take for my treatment. We had done the research. We knew the risks. We knew we were choosing the aggressive option, but we were confident that it was the right decision. And we were right. My doctor confirmed that just a couple weeks ago. Even though I am no longer in remission, my stem cell transplant bought me three years and apparently got my 17p deletion under control.

Now my stem cell doctor and leukemia doctor have offered three different treatment plans for consideration. Knowing us as they do, they told us to go home and research all of them and we would discuss the pros and cons next Monday at my appointment with my stem cell doctor. Mother has been going to all of my appointments with me these last months, but Paul will be going to this one as well. Paul has begun the in depth research as he always has in the past and I have started mine. We have talked at length. But so far we do not have a clear answer on this one. The risks are rough on all three. I have ruled out one because it has a tendency to lead to Richter’s syndrome, which is what led to the death of my buddy, Dave, so I simply just can’t.

The DLI (donor lymphocyte infusion) is different than the stem cell transplant in that only lymphocytes or T-cells are used…not the whole cell. Not only do they help fight infections but they are also able to recognize abnormal or cancerous cells and kill them.

The DLI is an effective treatment for minimal residual disease and to treat mixed chimerism, meaning that most of my cells are donor cells but some are still my old ones, which need to go away!

The DLI sounds like it would be the obvious choice, but it has a very high risk of GVHD (Graft versus Host Disease). There was the risk for this with the SCT as well, but not as high as the DLI because there is no chemo used in this procedure. Some GVHD is manageable. Some GVHD is life threatening. It is a lot to consider.

The leukemia drug, a targeted therapy, would simply manage it, not cure it. But the side effects are brutal. Or I could do nothing and wait until my leukemia is worse and take my chances on enjoying quality of life.

So do we take what’s behind Curtain #1, Curtain #2, or what’s in The Box? Please be praying with us. Pray for clear guidance from God. Pray for peace in whichever decision we make. We had that the first time. We are praying for that this time.

“Make me know Your ways, O LORD; teach me Your paths.
Lead me in Your truth and teach me, for You are the God of my salvation;
for You I wait all the day.”
Psalm 25:4-5

“Let me hear Your lovingkindness in the morning; for I trust in You;
Teach me the way in which I should walk; for to You I lift up my soul.”
Psalm 143:8

“I will bless the LORD who has counseled me;
Indeed, my mind instructs me in the night.
I have set the LORD continually before me;
Because He is at my right hand, I will not be shaken.”
Psalm 16:7-8

“I will instruct you and teach you in the way you should go;
I will counsel you with my loving eye on you.”
Psalm 32:8

May 2, 2015

May 2, 2015 - Today is my 3-Year Re-Birthday!

Three years ago today, I received my life giving cells from a postman from Massachusetts. Even though I am no longer in remission, it saved my life! The 17p deletion chromosome issue I had was something that would not respond to any treatments at the time. The SCT was the answer, and it came through!

When I was diagnosed, I had only been married to my high school sweetheart for one year. We are now about to celebrate our fifth anniversary. At that time, I only had one grandchild with one on the way. We are now about to welcome our sixth grandbaby in May. There have been a lot of changes in life. This “new normal” is real and has been difficult at times to get used to. But the alternative would not have given me this time with my family. There are no words to express my thankfulness and gratitude.

I have been able to spend more time with the Lord and in the Word than at any other time in my life. I see life differently. While there are times that I miss my fast pace past, this slower walk through life helps one not miss things that might be more important than the menial things that distract us. However, the times of aloneness because of a lowered immune system has been one of the most difficult to bear. So, I painted the house! ☺ It took several weeks of coaxing my doctors and them following my level of fatigue, but they finally agreed…using the no-fume kind. Of course, Paul was busy with me almost every evening after he got home from work. Bless his heart! He’d do anything for me. He loves me more than I deserve!

As we celebrate this day of life, we are looking at more possible procedures. My body just doesn’t seem to want to cooperate. The CAR T-Cell reduced the minimal residual disease (MRD), but did not get rid of it…did not bring about remission. So the team at MD Anderson is re-contacting my Postman to see if he would consider re-donating cells for a DLI (donor lymphocyte infusion). He was a PERFECT match, so it would be wonderful if he would give again. It’s like a mini-transplant without the chemo. I’ll keep you up to date.

But today I’m alive and choose to focus on the beauty around us. I take one day at a time and enjoy each moment…whether I’m painting our house, spending time with my sweetheart, getting to see family or friends, or alone with my God. Joy comes from within. And it has nothing to do with cancer.

The LORD is my strength and my shield; my heart trusts in him, and he helps me. My heart leaps for joy, and with my song I praise him.
Psalm 28:7

Oh give thanks to the Lord, for he is good, for his steadfast love endures forever!
Psalm 107:1

April 29, 2015

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

April 18, 2015

What if Hope DID Come in a Box?

This past weekend, my cousin Bonnie came and retrieved the beautiful HOPE Box to pass along to yet another friend who is beginning her cancer journey.  It has become evident, that even though my hair continues to fall out daily, I’m not going to be bald.  And I have made a few hat purchases of my own along the way, so I think I’ll be fine, just a little thin.

What has been true, so far, about every one who has had the HOPE Box (a box filled with wigs, little soft comfy hats, cute hats, scarves, etc.) is that they didn’t die!  It’s about to go to #6, I believe.  That’s pretty good odds!  :)

I can say with all certainty that Hope does come in a Book!  I have spent countless hours pouring over God’s promises and what He expects from me.  It seems that I have the easier of the two jobs…well sometimes.  :)   At it’s simplest, love God, put Him first; then love your neighbor as yourself…or rather deny yourself for the good of others. 

“Love the Lord your God with all your heart and with all your soul
and with all your mind and with all your strength.’ 
The second is this: 'Love your neighbor as yourself.'
There is no commandment greater than these."
Mark 12:30-31

Then why are there days that I struggle to find hope?  I know where it is!  I know what to do!  I think not getting to hear that simple word “remission” stole a thimble full of hope from me that day.  But hope is not for the taking, it’s for the giving.  And I refuse to give it up!

I saw a young woman bound across a parking lot today much like I used to.  I haven’t bounded in a while, and I’m not quite sure when I will bound again.  It made me cry.  But I had to get myself together and realize that I was out for only the second time without a mask!  Baby steps!  Be patient. 

I’m not sure how things would be for me mentally without Facebook.  While I am thankful for the simple, easy access means of communication, it has cost us the intimate face-to-face communication of old.  I have so appreciated the prayers, the ability to update, the comments and encouragements of older and newer friends from school, church and family.  For those who have never had to isolate yourself, just know if you do, take your iPad!  But for those looking for ways to minister to people who are alone, stop by for a short visit.  They’ll love it.

As soon as I am able, I am going back to MDA to be a volunteer.  I don’t have the energy now, but every time I’m there I’m given the opportunity to share with someone and encourage him or her in some way.  I do not believe that God is going to allow this disease to go to waste.  He allows us to endure certain hardships so we can be a blessing to others.

He comforts us in all our troubles so that we can comfort others.
When they are troubled, we will be able to give them the
 same comfort God has given us.
2 Corinthians 1:4

I have spoken to you with great frankness;
I take great pride in you.  I am greatly encouraged;
in all our troubles my joy knows no bounds.
2 Corinthians 7:4

And what’s that saying about stuff always coming in 3’s?!  Sometimes it just feels so overwhelming.  Two steps forward, three steps back. 

“We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed;”
2 Corinthians 4:8-9

“In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, so that the tested genuineness of your faith—more precious than gold that perishes though it is tested by fire—may be found to result in praise and glory and honor at the revelation of Jesus Christ. Though you have not seen him, you love him. Though you do not now see him, you believe in him and rejoice with joy that is inexpressible and filled with glory, obtaining the outcome of your faith, the salvation of your souls.”
1 Peter 1:6-9

And my God will supply every need of yours according to his
riches in glory in Christ Jesus.
Phillippians 4:19

What’s in your box?

April 14, 2015

Some News Takes a Day or So to Process…..

It was a Monday like most every Monday…packed up and ready for my day at MDA.  Though today was slated to be fairly short; just labs and a quick visit with Dr. Shah.   The labs went smoothly this week (I asked for the smaller needles up front).  No bathroom falls!  :)  I even lost a couple pounds.  (Note to self:  no need to pack on extra weight for a T-Cell trial…just a stem cell transplant!) 

When PA Mary and Dr. Shah went over my numbers, they weren’t bad at all.  Many were still a little low; some have inched into the low normal range.  Some were perfect!  This is very encouraging, especially because these were after the neupogen had worn off.  I even got permission to “carefully” see my grandchildren.

Their big concern continues to be this crazy Phantom Itch that I especially get at night.  They have consulted with others and I seem to be unique…of course.  She offered more sleeping pills which I declined, more doctor consults which I also passed on for now.  Paul and I really think that, after reading about all the meds I’m taking, I’m having a reaction to at least one of them.  I’ll survive until they get me off these meds.  If I still have it then, then we’ll see.  As far as the joint pain, it comes and goes, but it’s better than it was.  Hurray for those shots!  Then there’s the fatigue.  Whatever!  That’s what the couch is for!

Then came the drum roll.  I’ve seen this look before.  As much as I love my mother and appreciate her taking me to my appointments, I knew right then that I needed Paul. 

She handed me my Bone Marrow Diagnosis.  For those of you who tire of my techno mumbo jumbo it reads “bla bla bla, bla bla bla….”  SHE STILL HAS RESIDUAL CLL.  The good news is that it has been reduced to the VERY SMALLEST amount.  I couldn’t help but cry then, and honestly and can’t help but cry now.  We were really hoping and praying for remission.

BUT, it’s only been a month.  No one seems to be able to give a definitive answer as to how long the T-Cell fighters stay in there fighting.  If they’re still fighting, then perhaps next month’s bone marrow biopsy may have a different diagnosis.

Or perhaps this is just were God wants us.  Maybe we get just a little too comfortable when I’m in remission.  Perhaps that small percentage of CLL enhances our reliance on Him.  It shouldn’t.  But I’m pretty sure is does. 

In my devotion today, Jesus Calling, it says “At the end of your life-path is an entrance to heaven.  Only I know when you will reach that destination, but I am preparing you for it each step of the way.  The absolute certainty of your heavenly home gives you Peace and Joy, to help you along your journey.  You know that you will reach your home in My perfect timing, not one moment too soon or too late.  Let the hope of heaven encourage you, as you walk along the path of Life with Me.”

This hope we have as an anchor of the soul, 
a hope both sure and steadfast and one which enters within the veil.”

Hebrews 6:19