Mama He’s Crazy

This morning, my sweetheart and Dixie headed up to our little slice of heaven without me. I’m still battling with getting better from whatever I’ve had, and tromping around in the country didn’t seem like a good idea. Unfortunately, living with CLL is sometimes no fun. But we didn’t want to miss out on Beauty Berry picking, just because I couldn’t go. And Paul was on another mission equally, if not more, as important. 

At the end of November, Thanksgiving weekend, to be precise, my daughter and her Sam are going to publicly declare what they privately committed to the same time last year. On their one-year anniversary, we are going to have a wedding! Maybe more like a reception…somewhere in between. But it’s going to be a CELEBRATION! She asked Paul if he could make her a cake stand in his classic Stump to Finish fashion. He knew immediately the “cookie” he would use. He had already cut two rounds of Sugar Berry, complete with it’s amazing spalting. All he needed was the right pedestal. Thus his hunt today is for just the right piece of wood to partner with the other. Hmmm. Isn’t that a picture?!

As I sit here looking at the intricate grain pattern traveling throughout this slice of wood, I can’t help but think about the journey that brought these two together and the intricate way God weaves His plan throughout our lives. 

 I had only been out of the hospital for a couple months when Bethany met Sam for the first time. Compared to other guys she had seen, this Sam wanted to talk to her mama and assure her of his good intentions. He had a voice as deep as the ocean, a heart as big as Texas…even though he lived in Oklahoma! (a mama can’t have everything!)…he liked to cook, and he knew how to fix stuff! Bethany…I like this one! 

Time passed, others came and went, but Sam was always there being a friend…and sending songs. It became a “thing.” He would send her one. She would send him another. I told my girl that as a mama I prayed for one thing…that my children would know the kind of sacrificial, reciprocal, unconditional love that Paul and I have. All I wanted was to see her truly happy and completely loved before I left this earth. Then came another song…”Mama He’s Crazy.” I knew he was the one. Team Sam! Now what about them?!

Fast forward a few months later and she is going to Oklahoma for Thanksgiving! The kids were at their dad’s, and she had a few days to herself. (Now, I know this now…but did they call us? No!) Those two crazy kids weighed all the options and decided, “What the heck?!” Life’s short. Let’s do this! So off to the justice of the peace they went! Hand in hand. Heart to heart. Starting a new life together. 

So yes, the Lord has answered my prayers. She is truly happy and completely loved. And while I didn’t get to see the first ceremony, I have watched them live and merge their families together. And in another couple months, I will get to watch them renew their vows, celebrate this love that continues to grow, this new family that God brought together for His glory and their good. And my sweetheart will cut, sand, and finish these two different pieces of wood and then join them together as one. What a perfect picture of my Bethany & Sam as they have been prepared, sometimes harshly, over the years, to be joined and are now becoming a productive, beautiful work of art. 

And I got to watch. 

 

 

Living with CLL

Yesterday, after having had my upteenth follow up at MD Anderson, I was talking with my son about our respective days and what the doctors shared with me. During our conversation, he asked me, sort of timidly, “I understand that your ‘numbers’ have been going the wrong direction, but what do you actually DIE from when you have CLL?” That was a very good question…that I’m sure many folks who don’t have cancer might wonder. 

Cancer starts when cells start to grow out of control. Cells in nearly any part of the body can become cancer and can spread to other parts of the body. Chronic lymphocytic leukemia (CLL) is the most common leukemia in adults. It's a type of cancer that starts in cells that become certain white blood cells (called lymphocytes) in the bone marrow. The cancer (leukemia) cells start in the bone marrow but then go into the blood. In CLL, the leukemia cells often build up slowly. Many people don't have any symptoms for at least a few years. But over time, the cells grow and spread to other parts of the body, including the lymph nodes, liver, and spleen. Leukemia is cancer that starts in the blood-forming cells of the bone marrow. When one of these cells changes and becomes a leukemia cell, it no longer matures the way it should and grows out of control. Often, it divides to make new cells faster than normal. Leukemia cells also don't die when they should. This allows them to build up in the bone marrow, crowding out normal cells. At some point, leukemia cells leave the bone marrow and spill into the bloodstream. This increases the number of white blood cells in the blood. Once in the blood, leukemia cells can spread to other organs, where they can prevent other cells in the body from functioning normally. This is just a scratch on the CLL surface as there are so many additional variables such as negative markers…which I have…but I won’t get into that. Suffice it to say, it makes it harder to treat.

So…the answer to my son’s question is this. An infection (usually pneumonia) is the most likely cause of death of a CLL patient. CLL impairs our immune system, so that we are not as able to resist infection as someone with a normal immune system. Either that or a shutting down of the vital organs due to the limited “good” blood flow…or lastly, negative reactions to treatments…like Richter’s Syndrome when CLL transforms into a more aggressive form of large cell lymphoma. (Though I have a dear friend where it happened the opposite way…lymphoma to leukemia.)

So what does all of this have to do with LIVING with CLL?! I guess the first thing that I wanted you to know is that unless the Lord puts His Hand on my head and says “Be Healed,” there is no cure for CLL. And we’re ok with this. We weren’t at first, obviously…but we are now. We’re all going to die of something. I just have a higher percentage of knowing what mine’s going to be from…unless I get hit by a bus or we fall off a cliff when hiking! The Lord has appointed our days. That’s why I don’t worry. He’s got this. I just need to be faithful in pursuing my best options of staying around as long as possible. 

Which brings us to yesterday. Dr. W reviewed my treatment history…Campath to reduce leukemia prior to transplant, stem cell transplant, two donor lymphoctye infustions, and two CAR T-Cell trials. Only the transplant got me into remission for a couple years. Everything else were attempts to get me back there. They all failed…BUT they bought me TIME! They worked just enough to slow things down a bit. And give my body a chance to recuperate before ramping up for the next treatment. Dr. W has given us three paths to review and research. We actually have already started the research the last time we talked about this, but yesterday’s info was more intense. So as to not completely lose the majority of you, I will not go into too much detail about each of these protocols. Just enough that it makes sense for those who have asked…. 

Aberrant signaling of the B-cell receptor pathway has been linked to the development and maintenance of B-cell malignancies. Targeted inhibition of Bruton's tyrosine kinase, or BTK, has improved clinical outcome in patients with relapsed (and treatment-naïve) CLL. Acalabrutinib is one such BTK inhibitor with somewhat fewer side effects than its predecessor, Ibrutinib. 

Apoptosis is an orderly, programmed intracellular signaling cascade that leads to cell death. BCL-2 encodes an anti-apoptotic protein and was the first oncogene identified that primarily exerted its oncogenic effects by inhibiting cell death, rather than by promoting uncontrolled cellular proliferation. Venetoclax is one of a new class of cancer treatments that operates by directly promoting the cellular process of apoptosis, or programmed cell death. It is even been shown to work well with 17p deletion (which I have). 

Lastly, Obinutuzumab is a monoclonal antibody (antineoplastic cytotoxic chemo drug) that affects the actions of the body's immune system. Obinutuzumab strengthens your immune system to help your body fight against tumor cells. Combined with other drugs, it has shown to be effective in treating CLL. I say all this because ONE of the three choices included all three of these drugs…where the first two were either just BTK inhibitors or just BCL-2 inhibitors. The new trial, which just began a couple weeks ago at MDA, offers in our opinion the best of all options, plus it’s a 2-year trial with the goal of getting back to remission and buying me some more time. My name is on the list. 

So why not start now? Well, that’s a good question, too! I have several numbers that we follow…white blood count, hemoglobin, platelets, plus my absolute neutrophils and lymphocytes (part of the WBC). While most of my numbers continue to move in the wrong direction, my hemoglobin and platelets have been on the low but steady side. So because of the toxicity of treatment, they don’t get in a big hurry to rush into things until ALL my numbers are going south. Plus, they look at physical symptoms as well such as swollen lymph nodes (check), fatigue (check), night sweats, weight loss and enlarged spleen…ok on those currently. So as is so common with CLL…we wait. Another three months. And check again. Unless my physical symptoms worsen before then. 

I know this was a LOT of information, but so many of you have asked specific questions and asked how to pray. While I appreciate prayers for “healing,” outside of a massive miracle, CLL doesn’t just go away. But it can get squashed down for a while. So that’s my prayer. Always has been. That God will give us time. Time together. Time to do the things we love. Time with our family. Time with friends. Time to travel. Time to help others. Time to build our house and retire in the country. Time to enjoy this life He has given us. 

At the end of our lives, people often reflect and ask themselves…Did I live? Did I love? Did I connect? Did I matter? Did I contribute? Life has given me a second chance…a “golden ticket.” I intend to make sure I have used it well. 

What will you do to live today? To make difference? To be intentional? Will you have any unanswered questions when your day comes? Life is about choices. Choose well. 

 

 

Our Way Maker!

Today is Palm Sunday, but no one is at church…except a handful of leaders who met to livestream music and a sermon for us to watch on YouTube. Why? Because this is 2020…the year of the COVID 19 pandemic. And I thought this warranted being written down and remembered. But what I would like for us to remember is not the people fighting for the last roll of toilet paper or package of beans, it is that God made a promise to us a long time ago…and we need to think on that.

“Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Can any one of you by worrying add a single hour to your life.” Matt. 6:25-27

For years, people have been curious about my tendency not to worry about my cancer. God has gifted me with the ability to relax and live in peace through this journey. It has been the same for me during this pandemic. I don’t really get worked up by all of this. Prepare and protect, yes. Worked up and worry, no. Why? See above!

This morning, our pastor spoke on this passage as God redirected his heart this week. What a perfect word to bring to a worried world.

“And why do you worry about clothes? See how the flowers of the field grow. They do not labor or spin. Yet I tell you than not even Solomon in all his splendor was dressed like one of these. If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you—you of little faith? So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ For the pagans run after (frantically seek) after all these things, and your heavenly Father knows that you need them.” vv.28-32

Who does this sound like? The phrase “run after” actually means “frantically seek.” That is exactly what everyone has been doing! Frantically seeking all the things that they think they need to exist. BUT GOD! God knows what we need. He made us in the first place. The food and drink are pictures of necessity. The flowers of the field are a picture of how we look…even to the point of job promotion, getting into the right college, etc. He is quite aware of all of this. But what does He say next?

“But seek first His kingdom and His righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” vv. 33-34

It’s all about getting OUR priorities straight. Seek HIS kingdom, HIS righteousness, HIS people, HIS goals, HIS word…and He will make a way. There was a song back in the ‘90’s that we used to sing with the youth group that talked about Jesus being the Way Maker…He’ll make a way for you.

“When our situation is uncharted, WORRY prevents us from recognizing what’s really important.” Bobby Martin


“…do not worry about your life…but seek first his kingdom and his righteousness, and all these things will be given to you as well.” Matt. 6:25a/33

Christmas Memories

For some reason, this has been a rough Christmas season. I was late getting my shopping started. In fact, I’m not even done! We were late decorating. I don’t even have as much out as I normally do. All my normal organized planning has been skewed. We haven’t even watched our most beloved Christmas movies! And we’re not going to have any of our grandchildren this year…at least not on Christmas Eve or day. But Christmas is still coming…and with it the joy and memories of Christmas’ past, the love of family and friends, and most importantly the telling of and the rejoicing in the true meaning of Christmas…the gift of the Christ Child.

As I think back over all my life, what stands out to me as my fondest memories growing up and growing up my family, is just that…family. When I was little, we would go to my aunt and uncle’s for Christmas Eve for a fun party. I don’t remember a lot about those nights except for the homemade eggnog (two different bowls…one for kids, one for adults!), and the simple joy of being with family. One year as we were driving home, I “saw” Santa’s sleigh flying across the night sky and my folks said that he must be over on the south side of town and we needed to hurry and get home and in bed before he got to our side. ☺ Another year, as I leaned far to the end of my bed and peered into the living room, I was certain that I saw St. Nick putting the gifts under the tree. We had a party in my Mamie’s neighborhood every year where we got to sit in Santa’s lap. One year, I quietly recognized his watch. ☺ When I grew up, that same Santa photographed my wedding!

On Christmas morning, my ENTIRE family on mom’s side came to our house for breakfast…at 9:00am. My folks cooked scrambled eggs, bacon, biscuits, milk gravy, and others brought sausage balls, and other breakfast yummies. There was usually 30-40 of us! Grandparents, aunts, uncles, cousins…. It was glorious! It was loud. It was Family. It was Christmas. The quiet time alone with my nuclear family was always nice, but that wasn’t what made Christmas. The time with my big, wonderful, all encompassing Family was where my memories came from.

When I got married as a very young girl, those memories compounded, as my new family was as rich in tradition as my birth family. Christmas Eve was then filled with Polish food and traditions that will forever warm my heart. My children’s Christmas’ were also filled with family traditions. We were busy. It was crazy. We drove a lot! But no one ever seemed to mind because Family was worth the effort. And the memories are endless.

Today, it seems as if Family has been replaced somewhat by convenience, distance, and the desire to do one’s own thing. Back in the day, families lived closer together or simply knew they would be traveling to be with everyone. Christmas was perhaps a bit simpler or maybe just a different mindset.

Christ left us with two commands…1) Love God with all your heart, soul, and mind. And 2) Love your neighbor as yourself. It all comes down to this. The first is pretty obvious. The second one we sometimes get hung up on. Who is our neighbor and how exactly do we love them? Our neighbor is family, friends, and folks we haven’t even met yet. And to love someone as you do yourself is to put them first…because we unfortunately have no problem putting ourselves first. So love God and put others first. Sounds so simple.

So in these last moments before Christmas, may you be able to slow down just a bit during your last minute baking and wrapping and focus on the Christ Child and what He grew up to accomplish for us all. And may you have the opportunity to spend time with those most precious to you, and keep making memories.

Merry Christmas!

2019, August 29 – Are You Going to Die Today?

Today marks eight years since my leukemia diagnosis! The details of that day will be forever etched in my memory. But that’s not really what I wanted to talk about today. I’ve had this in my head and heart for some time but just haven’t taken the time to sit and write in down. I thought today would be a good day.

Other than my granddaughter, Dana, who is twelve, my other five grandchildren have no memory of me not having cancer. The only one that might have minimal recollection is Caleb, and he’s only nine. He was only one and a half when I was diagnosed. Ethan had just been born, and Jonah, Lily, and Elias were yet to be. So their whole lives have been accustomed to hearing that Tadee can’t do that or we can’t go see Tadee right now or Tadee isn’t strong enough to pick you up right now or playing peek-a-boo behind my mask. The first time we thought I was going to lose my hair, Dana and I played dress up with my wigs to help her feel more comfortable with the idea that “it’s just hair.” Every time I have gone into the hospital, the kids have come over for a special time together and a picture because I just don’t know when it’s going to be my time not to come home from the hospital.

But the thing that has gripped me the most is the innocent way they have embraced the reality of my situation. Especially Jonah. Last summer was really rough. I was in the hospital for almost six weeks, and it was pretty touch and go there for a while. It was scary to say the least. My grandchildren would FaceTime me, when I was able to, and it has been such a blessing over these years to still be able to communicate with them even when I wasn’t able to be with them in person due to my weakened immune system. But Jonah would always ask, whether on FaceTime or on the phone, “Tadee, are you going to die today?” And I would simply respond with a smile, “No. Not today, buddy.” And then he would ask the same thing the next time and the next. And my answer was always the same. No, not today, buddy.

Well, a year has passed and I am much more stable. Jonah hasn’t asked me that question in a while. But I know that it is only a matter of time that it will once again become part of my and their reality. Right now, Tadee can keep up a little better, not wear a mask except in the yard, and I can even pick a few of them up. I am thankful for every day God has gifted me. Eight years ago, we never expected that I would still be here. Hoped, prayed…yes. Expected…only with God. Now that I’ve gotten this far, our hope has expanded. But we still just take one day at a time.

And no, Jonah, I don’t think I’m going to die today. <3

Navigating our Journey

Earlier this week, I met with my leukemia doctor to go over the various treatment protocols that he presented to me last month. Paul and I had narrowed them down to two, one Standard of Care and one Clinical Trial. Based on how my various “counts” had been heading, Dr. W. and we were all prepared to start treatment sooner than later. And as it turned out, the two we had chosen were on the top of his list as well, especially the trial. However, it isn’t open for 2-3 more months.

But as we took a look at my labs this week, we were surprised to see that they had backed up a bit in each of the areas of importance. Just enough to buy me a little more time and be considered “stable” for the moment. Nothing ever seems to stay that way for long, but the timing was helpful, as I cannot move forward with either of the leukemia treatments until my lungs are clear. The medicine that I am taking for the fungal infection in my lungs counteracts with the main ingredient in both protocols…Venetoclax. So until my lungs are clear and I can get off of Noxafil, the prayer is that this sudden stable reading in my counts might hold strong.

While we were researching the various treatment plans, a sentence seemed to scream out and remind me of the reality of my disease.

“Relapsed or refractory chronic lymphocytic leukemia remains
incurable, despite advances in treatment over the past 5 years.”

Well, that about wraps it up! It went on to say that we (I) have increasingly developed resistance to therapies. (ie…a stem cell transplant that wore off, 2 DLI’s that didn’t work, 2 CAR T-Cells that didn’t work….) “Hence, additional treatments that have alternative mechanisms of action that are effective and have an acceptable side-effect profile are needed.” Thus, the introduction of a variety of monotherapies and targeted therapies. I realize that this is usually where I lose some of you, but many want to know the details.

The Standard of Care option is Venetoclax plus Rituximab. It is showing a 85% 2-year progression-free survival rate, with 17p del patients at 81.5%. Not bad!

The Clinical Trial option is Acalabrutinib/Venetoclax/Obinutuzumab. This is the one that Dr. W. is leaning toward but doesn’t open for a couple months. If my lungs take that long to clear, it might end up being the best option. Acalabrutinib is a newer version of Ibrutinib with supposedly fewer side effects, at least from what has been documented so far. The cool thing about this one is that after it has cycled, the A/V portion can be restarted again if necessary. That is not the case in most trials.

Both options have an extensive list of side effects such as neutropenia, low counts, nausea, diarrhea, rash…all the regular stuff. But I’ve been there, done that, have the t-shirt. The goal is to be here next Christmas and hopefully the one after that! My brother wants me to dance at his 50th wedding anniversary!! I’ll be happy to make our 10th then prayerfully our 15th!!! I am already defying the odds of my disease. I would really like to just blow this whole thing out of the water!! ☺ Only God!

My infectious disease doctor is doing another CT of my lungs on January 2 to check the status of the fungal infection. The problem is that they have no idea what it actually is or how I got it. I/we have been so incredibly careful and protective of where I go and what I do and I STILL got it! :/

So with joy and peace for each day, we will journey on, step by step. I wish each of you the Gift of knowing the One who is the giver of that joy and peace at Christmas and throughout the year.

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

When Saints Pray

(I wrote this while still in the hospital. I’m just now getting to publish it.)


The night after seeing our blessed news of “No Richters,” I laid in bed and thought about all the folks who had been praying for me and then imagined what that must have looked and sounded like in heaven.

I could hear a choir of voices rising together, some in unison, some in harmony, echoing through the Throne Room of God. A choir of voices that could not be missed or dismissed. Beautiful yet determined; hopeful yet believing, confident yet respectful. This song of prayer being sung from the hearts of my loved ones, near and far. Your song touched the Heart of God and saved my life! Do you truly understand the power of corporate prayer?

“This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us.”
1 John 5:14

“Then you will call on me and come and pray to me, and I will listen to you.”
Jeremiah 29:12

“And the prayer of faith will save the one who is sick,
and the Lord will raise him up.”
James 5:15

“Again I say to you, if two of you agree on earth about anything they ask,
it will be done for them by my Father in heaven.”
Matthew 18:19

“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.
Philippians 4:6

“Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.”
Hebrews 4:16

“In my distress I called to the Lord;
I cried to my God for help.
From his temple he heard my voice;
my cry came before him, into his ears.”
Psalm 18:6

“And I will do whatever you ask in my name,
so that the Father may be glorified in the Son.”
John 14:13


Thank you for praying me back.