August 10, 2018

It Hit Me Last Night

We have been SO busy making the most of every moment, taking care of mom, and just trying to keep up with all that is going on with those closest to us that the gravity of what I am about to embark on didn’t really hit me until last night. I have been teasing that I am going on a three-week vacation to MD Anderson! And maybe next time I’ll choose someplace like Cabo!!

The fact of the matter is this is a bigger deal than I may have intimated. And the fact that I “look so good” doesn’t help folks from thinking that I’m really ok and that this is probably not that serious. I have been very fortunate to be able to maintain my non-sickly appearance, but I truly believe it has a great deal to do with attitude. The Lord has been gracious to me and given me the ability to not worry…at least not about this. ☺ Worry doesn’t add a moment to our life…really only takes away.

The part that hit me last night was not being sick from the chemo or whether or not the cells will buy back my remission, it was the fact that I will not get to sleep next to my Paul for three weeks. :/ That is by far the hardest part. It was the first time I have cried about any of this. But I guess it’s a payoff. Hopefully, prayerfully, these three weeks will buy us many more years of time together. So we sacrifice three weeks for three years and hopefully more…lots more!

Yesterday, I was talking with my dear friend about trials and how some folks have a skewed view of them and their purpose in our lives. We have mistakenly thought that trials are given to us to make us stronger, but that often creates a dependence on self rather than the Lord…an “I’ve got this” mentality. Perhaps our trials should drive us to lean more on the Lord, into The Word, into His Arms, under His Wing… time spent with Him, even in our heart, mind, and prayer. When we lean on Him, our confidence and trust is through Him, and that is what makes us stronger.

So as we each walk our own journey, let us lean on our Saviour.

“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

July 9, 2018

We Are Not Consumed!

In the past weeks and months, we have learned of at least two other dear friends who have been diagnosed with the dreaded Cancer and other illnesses. We have heard of folks who have lost loved ones. We have again endured more hope followed by shattered dreams in the work place. We have watched loved ones walk difficult relationship roads. We watch families continue to rebuild almost a year post Harvey. And I am preparing once again to enter MDA for a three-week trial in hope of once again of reaching remission. Life is just hard sometimes.

This morning, my reading took me to Lamentations 3 where Jeremiah is lamenting his and his nation’s afflictions. It sounds worse than anything any of us have been going through here, but, of course, I guess it’s all relative.

“I am the man who has seen affliction by the rod of the LORD’s wrath.
He has driven me away and made me walk in darkness rather than light;
indeed, he has turned his hand against me again and again, all day long.
He has made my skin and my flesh grow old and has broken my bones.
He has besieged me and surrounded me with bitterness and hardship.
He has made me dwell in darkness like those long dead.
He has walled me in so I cannot escape; he has weighed me down with chains.
Even when I call out or cry for help, he shuts out my prayer.
He has barred my way with blocks of stone; he has made my paths crooked.
Like a bear lying in wait, like a lion in hiding,
he dragged me from the path and mangled me and left me without help.
He drew his bow and made me the target for his arrows.
He pierced my heart with arrows from his quiver.
I became the laughingstock of all my people; they mock me in song all day long.
He has filled me with bitter herbs and given me gall to drink.
He has broken my teeth with gravel; he has trampled me in the dust.
I have been deprived of peace; I have forgotten what prosperity is.
So I say, “My splendor is gone and all that I had hoped from the LORD.”
I remember my affliction and my wandering, the bitterness and the gall.
I well remember them, and my soul is downcast within me.”

Lamentations 3:1-20

How many times have we felt like Jeremiah? I remember when Isaiah felt very much like this. When David did. When I did. When those close to me have. But God!

“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 3:21-26

I do have to say that the rest of the chapter continues with more suffering but also with the faithfulness and compassion of God. So what should we do?

“And be not conformed to this world: but be transformed by the renewing of your mind, that you may prove what is that good, and acceptable, and perfect, will of God.”
Romans 12:2

“Be anxious for nothing; but in everything by prayer and supplication with thanksgiving let your requests be made known unto God. And the peace of God, which passes all understanding, shall keep your hearts and minds through Christ Jesus.”
Philippians 4:6-7

“Cast your cares on the LORD and he will sustain you;
he will never let the righteous be shaken.”
Psalm 55:22

“Let the peace of Christ rule in your hearts,
since as members of one body you were called to peace. And be thankful.”

Colossians 3:15

Let your light shine bright!

“Light dawns in the darkness for the upright; he is gracious, merciful, and righteous.”
Psalm 112:4

“For it is you who light my lamp; the Lord my God lightens my darkness.”
Psalm 18:28

“The Lord is my light and my salvation; whom shall I fear?
The Lord is the stronghold of my life; of whom shall I be afraid?”
Psalm 27:1

“For at one time you were darkness, but now you are light in the Lord.
Walk as children of light.”

Ephesians 5:8

“You came near when I called you, and you said, “Do not fear.”
Lamentations 3:57

Praying for His Light to light up your darkness, show you the way, or just be a beacon on the hill to give you encouragement.

June 5, 2018

We Have a Plan!

My team called yesterday to go over the schedule for my upcoming trial. Things usually pivot from the day they do the cell collection, so that’s where we started. I had a conflict with the first option, so we went with the second…which will be on my brother’s and one of my dear friend’s birthdays, June 19. Before collection can happen, all the pre-tests have to be run. So some of those will start this Friday, June 8, as I was already scheduled to see Dr. H anyway. The remaining tests and the signing of consents will be done the following Friday on the 15th. On Monday, June 18, I will once again receive either a CVC or a PICC line. They haven’t made that final determination. But having done this a few times, I imagine it will be a PICC line. I have only had to have a CVC (the one in my chest instead of in my arm) when I had my transplant.

After the apheresis (extraction of my blood for the removal of particular cells and the returning of the remainder to circulation), it will take 4-6 weeks for the cells to be reengineered and be ready to be returned to me via the trial (CAR T-Cell, Phase 2). That will put my inpatient portion of this shindig approximately early August. I will be in six days to receive pre-treat chemo and prepare for the infusion. These are considered Days -6, -5, -4…. The infusion with be on Day 0. Then I’ll be there for probably another week or so afterwards for monitoring. If everything goes ok, I should be able to go home after that and just come back for my frequent check ups…weekly, bi-weekly, then monthly.

So, we are thankful to have a plan in place. This is very similar to what we did in 2015, but the trial has been revamped…prayerfully with better results. And that is where you come in. Please pray with us for limited side effects and maximum results. The possibilities are endless both ways. But as always, I am in the Hands of my Almighty Father, the Great Physician, the King of Kings and Lord of Lords. What could possibly go wrong?! ☺

April 27, 2018

I Think We Have a Plan

For the past four weeks, we have waited patiently, researched, read, and prayed. Last night, we prepared ourselves for the possible outcomes and how we would respond. Today, we received the ok to be able to proceed with what we feel is the best option for us. CAR T-Cell, Phase 2.

Some of you may remember me having a CAR T-Cell trial back in 2015 that didn’t end up working. Well, they have taken the information from that one, improved it, and have come up with a much more effective outcome. Plus, they have changed the primary makeup of the CAR (chimeric antigen receptor) so the antibodies that I have developed will not be a factor against me.

This trial includes the FC (Fludarabine/Cytoxan) pretreatment, so it will be a bit more toxic than my last one. And I will be in the hospital for two weeks, which is a little longer than before. But as from the beginning, our choices of more aggressive treatment options have played a key role in keeping me alive. That along with a lot of prayer and God’s gracious timing. Dr. H said today that with my P53 deletion, I would not have made it this long without our proactive attack measures. It was encouraging to hear that we have made the right choices. I guess the fact that I’m still here is evidence enough, but it was still nice to hear.

What was interesting to hear was her suggestion of a second transplant. We have pretty much left that as a last ditch effort after having done everything else because the statistics of dying during your second transplant are significantly higher. Well, she told us that those statistics are mostly because second transplants are usually done within a very short time after the first one not working. Since it’s already been six years since my first and it will hopefully be another year or two or five (or ten) before I get to the point where I have no more options, she said that my odds are really great for a second transplant! Much like they were for my first one. So that was really good news. Not that I want to do that again any time soon, but the fact that it’s an option is comforting.

So all that to say, I don’t think I’ll die this year. ☺ I’ve got stuff to do, places to go, people to see, cookies to bake. But I’ll be busy this summer getting my mojo back.

March 30, 2018

The Results Are In

The hours ticked by today and I finally figured that since it was Good Friday that I was probably not going to hear from my team. But around 6:30 pm, Dr. H called with the results of my bone marrow biopsy, cytogenetics, and flow cytometry reports.

In a nutshell, my CLL percentage is up from 20-30% to 50% in five months. The P53 deletion is still a thing. And my donor cell percentage continues to inch downwards little by little. You know how when you think of the Lord, the phrase is “less of me and more of Him.” Well, that was the goal with my donor! But it’s going the other way. :/

Dr. H is meeting with all the various doctors who head up the various CAR trials and is trying to figure out which one I will qualify for and will be the best fit. I mentioned before that there is a big question regarding the NK trial, but the Phase 2 T-cell trial might work. She told me tonight that there is even a trial through Baylor that she is looking into. So I have absolutely no idea. Please pray for my team as they assess these various options for me.

Until the end of April when I go back to see Dr. H (then early May when I see Dr. W, my leukemia doctor), I will just be patiently waiting. They have given me some suggestions to try to help with the fatigue, which has gotten progressively worse, so I will work on that for the time being. And I will enjoy the sunshine, the flowers, the warm weather, sitting on the porch with my sweetheart, going to Oletha, family, friends, good food, conversation, and all the other good gifts that our Good Lord has given.

And then we’ll take the next step. Thank you for walking and praying with us along this journey.

Because of Him, it is still a Good Friday.

“Praise be to the God and Father of our Lord Jesus Christ!
In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead.”

1 Peter 1:3

March 23, 2018

Another Bump in the Road

I’m tired, my hip’s sore, and I really don’t want to talk about this right now…but I know there were many who prayed for me today and I want to share at least what I know at the moment. I won’t have the important results back for one to two weeks. My regular labs are hovering around the same as they have been. Lymphocytes up, neutrophils down. Platelets hanging in there.

The news that threw me for a loop today was that the trial (CAR NK) that I had already been approved for (by MDA and by my insurance company) may no longer be available to me due to my previous participation in the CAR T-Cell trial. Dr. H said that the lead NK trial doctor has gone back and forth regarding my eligibility because the product used to develop the chimeric antigen receptor (CAR) in the Phase 1 T-Cell trial is the same as that of the CAR NK trial. They have seen situations where patients have had second CAR trials, and the subsequent trial did not work because the patients had developed antibodies to the antigen so it didn’t “take” the second time. They are concerned/convinced that the same thing would happen in this situation. So it would be pointless to subject my body to two strong pre-treat chemotherapy drugs when my body will most likely reject the antigen (CAR).

It took us quite a while to wrap our heads around this trial in the first place and get to the point that we were ready to move forward…and we were finally comfortable with our decision, should the bone marrow biopsy comes back as expected. And then WHAM! Time to rethink again! Dr. H is going to re-present my case AGAIN to the team to make certain of their concerns. She also reminded me that the Phase 2 CAR T-Cell trial is still on the table. It uses a different type of product (not mice) in the preparation of the CAR so I would not have the same risk of rejection. I had thought that Phase 2 was only for lymphoma and ALL patients, but that was for standard care. It is still available as a clinical trial for CLL. So there’s still a possible option for me to achieve remission. Sigh.

All of this to say it’s been quite a day. I am thankful for my friend, Deidra, who drove me, talked with me, and kept me sane! I am ever thankful for my medical team who answers my endless questions, even after I get home. I am thankful for my husband and family who loves and upholds me and helps me remember stuff! And I am thankful for my God who calms the waves when the storm rages and carries me when I just can’t take another step until I am filled with His strength to once again journey on.

“God is our shelter and strength, always ready to help in times of trouble.”
Psalm 46:1

“The righteous call to the Lord, and he listens; he rescues them from all their troubles.”
Psalm 34:17

“Whoever goes to the Lord for safety, whoever remains under the protection of the Almighty, can say to him, “You are my defender and protector.
You are my God; in you I trust.”
Psalm 91:1-2

February 6, 2018

Rest for the Weary

Today, one of my dear friends is downtown at MD Anderson having tests run trying to find answers to yet another physical disorder most likely caused by the heavy drugs used to save her life from cancer years ago. Oh, the double-edged sword!

Another friend’s life is hanging in the balance, continuing the fight to recover from a lung transplant.

I am on a treadmill currently, slowly walking through life, enjoying the scenery, stopping every two weeks to check my labs…. This is the plan through March 27.

As I opened the Word this morning, I was reminded to “Come and Rest!” The road ahead of us may be unknown. It may be steep and scary. But we have One whose Hand we can hold onto tightly. Sometimes He walks with us. Sometimes He carries us. Sometimes He holds us close. Sometimes these hard times are the only way He can teach us, or those around us, the lesson He wants us to learn.

“Come to me, all you who are weary and burdened, and I will give you rest.
Take my yoke upon you and learn from me,
for I am gentle and humble in heart, and you will find rest for your souls.
For my yoke is easy and my burden is light.”
Matthew 11:28-30

“…and in the wilderness where you saw how the Lord your God carried you,
just as a man carries his son, in all the way which you have walked
until you came to this place.”
Deuteronomy 1:31

“Even there your hand shall lead me, and your right hand shall hold me.”
Psalm 139:10

“My soul finds rest in God alone; my salvation comes from him. He alone is my rock and my salvation; he is my fortress, I will never be shaken.”
Psalm 62:1-2

“The Lord replied, ‘My Presence will go with you, and I will give you rest.’”
Exodus 33:14

“You will keep in perfect peace those whose minds are steadfast,
because they trust in you.”
Isaiah 26:3

“The Lord is my shepherd, I lack nothing. He makes me lie down in green pastures, he leads me beside quiet waters, he refreshes my soul.
He guides me along the right paths for his name’s sake. Even though I walk through the darkest valley, I will fear no evil, for you are with me;
your rod and your staff, they comfort me. You prepare a table before me in the presence of my enemies. You anoint my head with oil; my cup overflows.
Surely your goodness and love will follow me all the days of my life,
and I will dwell in the house of the Lord forever.”
Psalm 23

“I have told you these things so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”
John 16:33