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

January 18, 2018

What’s Next?

As many of you know, and have been so kind as to continue encouraging and praying for me, last Friday was hard. The Lord has been so incredibly gracious to me these past years in helping me to stay positive and joyful throughout this journey. But every once in a while, when things continue to go the wrong way, you just need a day to regroup. Friday was mine.

In keeping things in perspective, I am not dying…today, or next month. “You look so good!” Yeah, well thanks! Tell my cells! I have friends, and folks I meet at MDA, who are on the brink of death. My heart breaks for them. I understand! And I understand that I am not there yet, this time. Where I am is in an ever-declining state of an incurable disease. Cancers with masses that can be removed and then the area radiated and treated with chemo can be “cured.” Leukemia is a blood cancer. You can’t cut it out, radiate it, and be done with it. It’s just different. It affects your whole being at its core, at the cellular level. Much has been discovered just in the six plus years since I was diagnosed. There are drugs and treatment plans that are being used now that had never even been heard of six years ago. So there is a great deal of hope for the future. But one has to live long enough to get there.

I have already used up several of the protocols that are available to me. I have had a stem cell transplant (which bought me two years of remission) and had two of the major chemo drugs utilized for my disease. I could conceivably have used them one more time in the future, but since I have 17p deletion, I am chemo resistant, so chemo is pretty much off the table except for anything other than a pre-treat drug. It’s not going to work long term. I have had the CAR T-Cell Trial, but that didn’t work…other than keeping me in minimal residual disease status (MRD) for a year or so, but it did not achieve remission. Over the last couple years, my numbers have continued to steadily climb/decline, and my team decided to move forward with the Donor Lymphocyte Infusion (DLI)…one last summer and a second in December. Neither has worked. My numbers continue to go the wrong direction.

The only options I have left are the CAR NK (Natural Killer) Trial which is a very new trial utilizing cord blood rather than my own or my donor’s. The second option is to wait until my numbers meet the specifications of the Leukemia Dept for treatment (I’m almost there) and go on one (or more) of the targeted Leukemia drugs (Ibrutinib, Venetoclax, Zydelig). The thing about those is that they are not designed to bring you to remission. They just keep you from dying…which is a good thing. But most CLL patients are much older than me when diagnosed. If I had been 70+, had been through all I have been through, had bought six years, and then was being offered a drug that could possibly give me 2-5 more years, then I would be all over that. But I was 50 at diagnosis. I am now 56. I am looking to buy a couple decades, not just a couple years! I need to try everything I can to achieve remission…even if it’s scary.

Which brings me back to the CAR NK Trial. I wrote my doctor team last Friday afternoon, thanked them for the amazing care they all have provided me over these past years, but let them know that on that particular day I felt a bit hopeless. My numbers continued to creep in the wrong direction but weren’t yet (by one point in one area) in the range of treatment for the Leukemia Dept. It is difficult to determine “fatigue” when I have been dealing with it ever since the stem cell! And I have never had issues with my platelets. God has just protected me from that the whole time! And if my goal is remission, the only real option at this point is to reconsider the Trial. Before I had the second DLI, there had only been three people who had entered the trial and one had died. Not good odds. Since then, more have joined, with better odds.

“The goal of this clinical research study is to learn if giving genetically changed immune cells, called CAR-NK cells, after chemotherapy will improve the disease in stem cell transplant patients with relapsed (has returned) and/or refractory (has not responded to treatment) B-cell lymphoma or leukemia. Also, researchers want to find the highest tolerable dose of CAR-NK cells to give to patients with relapsed or refractory B-cell lymphoma or leukemia. The safety of this treatment will also be studied.
This is an investigational study. The making of and infusion of genetically changed NK cells and the drug AP1903 (if you receive it, explained below) are not FDA approved or commercially available for use in this type of disease. They are currently being used for research purposes only. The chemotherapy drugs in this study (fludarabine, cyclophosphamide, and mesna) are commercially available and FDA approved.
Up to 36 patients will take part in this study. All will be enrolled at MD Anderson.”

So for those of you who are into details, there you go. That’s it in a nutshell. I got word today that they are going to contact my insurance company for pre-approval just to have it ready and on the table for when my body recuperates from the DLI. (You have to wait a certain amount of time between treatments.) This one is a bit scary, and I will have to be in the hospital for a few weeks. The pre-treat is pretty intense, but I just don’t see any other options at this point. Go big or go home.

So that’s it, my friends. Until then, they continue to check my numbers every two weeks. They are trying to figure out why my knees went south again. And we continue to take each day with joy and a thankful heart. Joy comes in the morning. I just had to get past Friday.

Let all that I am praise the Lord; with my whole heart, I will praise his holy name. Let all that I am praise the Lord; may I never forget the good things he does for me. He forgives all my sins and heals all my diseases.
He redeems me from death and crowns me with love and tender mercies.
He fills my life with good things. My youth is renewed like the eagle’s!

Psalm 103:1-5

November 6, 2017

The Decisions Keep Getting Tougher

It’s been a while since my last blog post, so to catch up a bit, I had a DLI (donor lymphocyte infusion) this past summer and then a bone marrow biopsy last month to see it the DLI had worked. It didn’t. The biopsy also revealed that my 17p deletion has come back full throttle. For those who have been following this journey of ours from the beginning, you may recall that the 17p deletion issue was the defining point in moving forward with my transplant. It makes my disease a bit more ornery and difficult to manage.

We knew that a second DLI was on the table, but my doctor called a week or so ago and told us about two new trials that the stem cell team wanted us to consider…a 2nd Generation CAR T-Cell Trial and a CAR Directed NK (Natural Killer) Cells Trial (for B Cell Malignancies). We immediately began our research, becoming more and more concerned, confused, lacking confidence with any direction. During the past six years, we have always felt a strong leading from the Lord and from our own investigation that we were making the right decision. This time has been different. The options have been scary at best, toxic at worst.

This week we would be meeting with our team of doctors, hoping for answers to our many questions. We went armed. Today we met with my leukemia doctor. He is not my primary doctor but he is part of my team. Since I am a stem cell patient, the stem cell doctors act as my primary care team. Dr. W. was very helpful, answering many of our questions about the two trials, about why my 2015 trial didn’t work, and about the two drugs his team has available to me, even with 17p deletion, Ibrutinib and Venetoclax. He discussed the benefits, risks, and the PFS (Progression Free Survival). A third drug is also available, but it carries the high risk of morphing into Richter’s Syndrome, which is what helped take down my buddy Dave. Not even going there.

In a nutshell, it just doesn’t appear that either of the trials provide enough benefit versus risk at this point. While Dr. W is still more of a proponent of the drug treatment protocol, the average PFS is only about two years with any of them. Then I would have to switch drugs or go on another trial. So unless the stem cell team has something amazing up their sleeves on Wednesday, we are now confident in our decision to move ahead with the second DLI. I still have cells in the MDA freezer, my donor was/is beyond a perfect match (14 of 14!), and this round will be done with a higher dose of cells and without chemo. The goal is to get my donor cell count to 100% or as close as possible. They are currently at 84% of my T-cells and 48% of total cells. So we have some work to do. They need to take over and obliterate my bad guys. Or we’ll have to move on to Plan B. And that will mean revisiting all the above.

Sunday, as the Lord so often does, He spoke right to my heart through Pastor Dean. He spoke on Psalm 23 in such a way as I have never quite heard it before. Dean has a way of doing that. So does our sweet Lord. Take a moment and reflect on these words. And thank you for praying and for taking this journey with us.

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.

September 10, 2017

Difficult Conversations

I have been going to MD Anderson just about every Friday…either for labs, to see a doctor, or sometimes just for a dressing change on my PICC line. I have lots of opportunities to visit with other patients and with the staff at MDA. I have written frequently on Facebook about the opportunities the Lord has given me to encourage those who I call “deer in the headlight” patients. Those who I can tell are fairly new to the process and who look lost and afraid. I was once there and understand those feelings. It is my honor and privilege to be able to talk with them and help in whatever small ways I can.

But today I’d like to talk about a couple of conversations, both of which hit me pretty hard. First, while I was in Infusion Therapy getting my dressing change, the nurse asked me, “Is that your hair?” Not an uncommon question in my circle. ☺ I told her that it was and she complimented me on it. I told her that I was very thankful because I had lost a great deal of it twice so far. The first time it grew back much grayer and mousy looking with a much different texture than my regular hair. Then the second time I lost it, it grew back it’s original brown (with just the amount of gray that I was on track to have) and with my original wave and texture. It was a very nice relief! She then told me about a friend of hers who had lost her hair and it had also come back gray and mousy. I teasingly said that maybe she just needs to lose it a second time and she’ll be lucky like me and it’ll come back better. Then her whole face told the story as she said, “she doesn’t have a next time.” My heart sank. Why hadn’t I thought before I had spoken…especially here. She shared that her friend had started with breast cancer, which had then developed into brain cancer. But, she said, her friend had bartered with God for ten years. Her son had been eight years old when she had been diagnosed. She asked Him to please let her see her son grow up. She made it to his high school graduation! Then her time was up. She had gotten her ten years.

It made me think a little of my situation. I have no idea how long I will have here. I am so thankful for the time I get to spend with my sweetheart, the time that is carved out for me to be with my grandchildren, conversations with those I love about everything and about nothing at all. Time sitting on the patio holding hands or walking across the fields under the big blue sky in Oletha.

Which brings me to the next conversation…the one with my doctor. While we know it’s only been six weeks since my DLI (donor lymphocyte infusion) and there is still time for results to come, it doesn’t seem to be working. My donor count has only moved a few points. So the plan is to give it another four weeks with continued lab checks, and on October 6 we’ll do a bone marrow biopsy and a full set of labs to get a complete look at the situation. She’ll then present to the team once again and possibly/probably recommend a SECOND DLI. This time there would be no pre/chemo; just an increased amount of donor cells…which to us increases the fear of GvHD. :/

As of now, my WBC and my platelets are holding well. She said that I am an anomaly. Of course, I am. I always have to be different! If I were to only get a ten-year gig as my nurse’s friend did, I am already six years into it. That would leave me only four left. I wouldn’t see Dana graduate. I would barely see Caleb and Ethan get out of elementary school. Jonah would remember. But I’m not sure if Lily and Elias would have had enough time.

Teach me to number my days, Lord! And if you are still into bartering, I’ll take 30!

"So teach us to number our days that we may get a heart of wisdom."
Psalm 90:12

September 5, 2017


Today is the first day that many folks have been able to begin to re-enter the world of normalcy after the worst hurricane flooding disaster of our time. People are going back to work, kids in some parts of town are going back to school. But then there are countless others who are still buried in rubble and drenched memories with broken, smelly homes trying to take one step at a time out of this devastation.

We were some of the lucky ones who were high and dry. Not that it wasn’t scary, listening to the endless rain, watching the retention pond in front of our house crest at the very top daring to come the rest of the way toward our homes. We lived for days staring at the news on TV and our friends’ posts on Facebook. We had two displaced family members staying with us, so I stayed busy cooking and caring for my increased household (including two extra dogs). My heart broke as I read post after post of family and friends who were being evacuated. By this age, I have a lifetime of family and friends spanning decades of ministry and work across the greater Houston area, Fort Bend, Corpus and beyond. I just felt so very helpless. But there were countless out there who were doing just that…helping. In every way imaginable. It was incredible to watch. Unforgettable.

After the worst of Harvey had passed, the rain finally moved on, and the sky began to clear, it was amazing to see our city, our communities, our people rally together, doing whatever it took to make sure every last person was safe, cared for, was getting shelter, was getting help. In the days since, strangers have become friends, cleaning out houses, leading teams, finding needs, baking, gathering donations, shopping, praying, giving in whatever ways, big or small, that they can. Our city has been united in such a way that I have never seen before.

While there is still so much to be done…students having to double up in schools that didn’t have damage, myriad of homes, churches, schools, businesses to be rebuilt, cars to be replaced, livelihoods to be recouped…there is a prevailing attitude throughout our city. Thankfulness. Even when so many have lost so much. I have heard it every day on the news…people thanking God for their life, for their family. My heart breaks for what has been loss. But I am so abundantly proud of the heart of our city, of our people, who have chosen what is better. I can only imagine how incredibly painful it is to lose so much of what you hold dear, but the perspective that these amazing folks are carrying with them I pray sets an example for the rest of the country. From the folks who are receiving to the ones who are giving, the spirit is the same. Thankful to give. Thankful to receive. Thankful to be alive.

We are definitely in the limelight right now. We have let our light shine brightly throughout this dark time. Keep shining, Houston. Shine on!

pictures from various news media and friends FB posts

August 7, 2017

The Peace that Surpasses All Understanding

How do you stay calm in the midst of trials? Today’s devotional and my corresponding readings touched on that, and I thought it was especially timely with so many of my friends and family going through such difficult situations. My heart has been heavy for them. It’s one thing to have your own stuff. It’s quite another when you see it in the lives of others.

“Understanding will never bring you peace. That’s why I have instructed you to trust in Me, not in your own understanding. Human beings have a voracious appetite for trying to figure things out, in order to gain a sense of mastery over their lives. But the world presents you with an endless series of problems. As soon as you master one set, another pops up to challenge you. The relief you had anticipated is short-lived. Soon your mind is gearing up again; searching for understanding (mastery), instead of seeking Me (your Master).” (from Jesus Calling)

“Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight.”
Proverbs 3:5-6

“Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.”
Romans 5:1-5

“You will keep in perfect peace all who trust in you,
all whose thoughts are fixed on you!”
Isaiah 26:3

Be anxious for nothing, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. Finally, brothers, whatever is true, whatever is honorable, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think on these things.”
Philippians 4:6-8

So whether it’s my own cancer, or my friend’s nephew’s brain cancer, or another friend’s sister’s newly found stage IV brain cancer, or my daughter’s school friend’s cancer, or another friend’s husband who is nearing the end, or others who haven’t even told anyone yet, or friends who have recently lost loved ones, or folks who are dealing with broken relationships, or difficult pasts, or aging parents…. The question “why” is naturally ever in our thoughts. But let us look to His Word and gaze on His Face. “Let not your heart be troubled. You believe in God, believe also in Me.” John 14:1

Growing up in church has given me many precious gifts…the knowledge of God’s Word and a heart and mind full of music and lyrics. Chemo brain has taken a great deal of my memory, but these songs are a part of the DNA that stuck with me! And for that I will be forever thankful.

“I don't know about tomorrow,
I just live from day to day.
And I don't borrow from the sunshine
'Cause the skies might turn to gray.
And I don't worry about the future,
'Cause I know what Jesus said,
And today I'm gonna walk right beside him
'Cause he's the one who knows what is ahead.

There are things about tomorrow
That I don't seem to understand
But I know who holds tomorrow
And I know who holds my hand.

And each step is getting brighter
As the golden stairs I climb.
And every burden is getting lighter
And all the clouds, they're silver lined.
And, I'll bet the sun it's always shining
There no tears will ever dim the eye
And the ending of the rainbow
Where the mountains, they touch the sky.

There are many things about tomorrow
I don't seem to understand
But I know who holds tomorrow
And I know who holds my hand.”

July 26, 2017

Third Time’s a Charm!

I don’t know why I still get nervous about these treatments. It’s my third go ‘round. I know pretty much what to expect. Of course, every one is a bit different with varying possible outcomes. My tummy gets queasy and uneasy and I get a bit of a headache…probably because of my mind racing for the past several hours!

I lay there in bed last night reminding myself that everything was going to be fine. No matter what. I thought off all sorts of funny things that I was going to write this morning, but I can’t remember now what they were! ☺ All I can think about is what is about to happen to my body, scripture, and my family.

Is it going to work this time? How severe will the GvHD be? Will this be the one to get me back into remission for an extended period of time? Will I get to spend time with my sweetheart much longer? My grandbabies? Kids, family, friends….

I trust that the answer will be YES. But we aren’t guaranteed the answers that we pray for. I am thankful that I have SO many faithful prayer warriors lifting me up before our Father. I am confident that the main reason I am still here after almost six years is because of your steadfast prayers.

So, while “Good Things Come in Three’s” and “Third Time’s a Charm,” there’s also “Three Strikes and You’re Out!” :/ So I guess we won’t base my life on sayings!!

Instead, I will look to our Heavenly Father for His comfort and peace and walk into that familiar building yet another time trusting them and their expertise while trusting my Lord and His mercy and goodness.

Psalm 34
“I will extol the Lord at all times; his praise will always be on my lips. My soul will boast in the Lord; let the afflicted hear and rejoice. Glorify the Lord with me; let us exalt his name together. I sought the Lord and he answered me; he delivered me from all my fears. Those who look to him are radiant; their faces are never covered with shame. This poor man called, and the Lord heard him; he saved him out of all his troubles. The angel of the Lord encamps around those who fear him, and he delivers them. Taste and see that the Lord is good; blessed is the man who takes refuge in him. Fear the Lord, you his saints, for those who fear him lack nothing. The lions may grow weak and hungry, but those who seek the Lord lack no good thing. Come, my children, listen to me; I will teach you the fear of the Lord. Whoever of you loves life and desires to see many good days, keep your tongue from evil and your lips from speaking lies. Turn from evil and do good; seek peace and pursue it. The eyes of the Lord are on the righteous and his ears are attentive to their cry; the face of the Lord is against those who do evil, to cut off the memory of them from the earth. The righteous cry out, and the Lord hears them; he delivers them from all their troubles. The Lord is close to the brokenhearted and saves those who are crushed in spirit. A righteous man may have many troubles, but the Lord delivers him from them all; he protects all his bones, not one of them will be broken. Evil will slay the wicked; the foes of the righteous will be condemned. The Lord redeems his servants; no one will be condemned who takes refuge in him.”