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.
November 6, 2017
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
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
HARVEY
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
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.”
“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.”
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.”
July 22, 2017
Not Always As It Appears
“You look so good!” I’ve heard that a lot these last months…and I appreciate it! I am thankful for the fact that I don’t “look” like I have cancer this time. It’s a little less depressing. But now that I am almost at my six-year mark, I’m way past being depressed. Been there, done that, have the t-shirt. I have learned how to walk this walk, live this life, endure this journey. I am just thankful to still be here!
Yesterday, they (MDA) did my labs before starting my chemo so we could 1) see how the first week of chemo affected my body and 2) have a baseline for comparison purposes for going into the donor lymphocyte infusion (DLI) this coming Wednesday. I was surprised to see how much my white blood count (WBC) had dropped in just one week…4 points! If my counts continue to drop at this rate, by the time I complete all four rounds, I will be severely immunocompromised. Not that this is a surprise by any means, just a confirmation. That is why my beloved caregivers are being extremely conservative with my exposure. They, and the Good Lord, have kept me alive this long. We would like to continue that course!
The other results that came back was my Engraftment (or Chimerism) report. This is the one that talks about the percentage of donor cells to my old cells. This one hit me right up side the head. If there were any doubts or questions left in my mind as to whether or not we were making the right move with this treatment, this report cleared that up. Dr. H. printed out two reports, one from February 2017 and the one from July. The main type of cell that they track regarding my donor count is my T-Cells, which have dropped from 100% (when I was in remission) to the 90-95% range (when I had MRD…minimal residual disease), to 82% in February and 81% in July. The initial drop to 82% was what got our attention. But there was another number that startled me…the mixed chimera in the Total DNA. That number fell from 46% in February (which already sounded pretty low) to 29% in July! Dr. H. said that indicates the growth of the CLL. It is definitely time to get some more donor cells in there and kick some CLL butt!!
The reason I felt so compelled to write about this, other than many of you are very caring and ask detailed questions, is that if I hadn’t already had cancer and a stem cell transplant and was being monitored on a very regular basis, no one would have caught this!! I look fine. And for the most part, I feel fine…comparatively. For a stem cell patient, I feel fine. That’s another story. I am very attuned to my body and the slight variations and differences that occur. I have to be. But for the average person, there would have been no reason to go to the doctor yet. That is why so many people end up with Stage IV cancer before they ever find it! ☹
So what do you do? Know your body. Get your check ups. Eat right. Exercise. Get rid of all the ick in your diet and lifestyle. I know, eat right and die anyway. Well, maybe you won’t die as soon. I am not afraid to die at all. I know where I’m going and with Whom I will be with. But I have a lot more living to do. I come from tough stock! You should have met my grandmother. My Mamie was an amazing woman who taught all of us by example how to love God and family, how to work, how to serve, how to be joyful, and how to never give up. I’d like to make her proud.
“Not lagging in diligence, fervent in spirit, serving the Lord; rejoicing in hope, patient in tribulation, continuing steadfastly in prayer;
distributing to the needs of the saints, given to hospitality.”
Romans 12:11-13
“The Lord bless you and keep you;
The Lord make His face shine upon you,
And be gracious to you;
The Lord lift up His countenance upon you,
And give you peace.”
Numbers 6:24-26
Yesterday, they (MDA) did my labs before starting my chemo so we could 1) see how the first week of chemo affected my body and 2) have a baseline for comparison purposes for going into the donor lymphocyte infusion (DLI) this coming Wednesday. I was surprised to see how much my white blood count (WBC) had dropped in just one week…4 points! If my counts continue to drop at this rate, by the time I complete all four rounds, I will be severely immunocompromised. Not that this is a surprise by any means, just a confirmation. That is why my beloved caregivers are being extremely conservative with my exposure. They, and the Good Lord, have kept me alive this long. We would like to continue that course!
The other results that came back was my Engraftment (or Chimerism) report. This is the one that talks about the percentage of donor cells to my old cells. This one hit me right up side the head. If there were any doubts or questions left in my mind as to whether or not we were making the right move with this treatment, this report cleared that up. Dr. H. printed out two reports, one from February 2017 and the one from July. The main type of cell that they track regarding my donor count is my T-Cells, which have dropped from 100% (when I was in remission) to the 90-95% range (when I had MRD…minimal residual disease), to 82% in February and 81% in July. The initial drop to 82% was what got our attention. But there was another number that startled me…the mixed chimera in the Total DNA. That number fell from 46% in February (which already sounded pretty low) to 29% in July! Dr. H. said that indicates the growth of the CLL. It is definitely time to get some more donor cells in there and kick some CLL butt!!
The reason I felt so compelled to write about this, other than many of you are very caring and ask detailed questions, is that if I hadn’t already had cancer and a stem cell transplant and was being monitored on a very regular basis, no one would have caught this!! I look fine. And for the most part, I feel fine…comparatively. For a stem cell patient, I feel fine. That’s another story. I am very attuned to my body and the slight variations and differences that occur. I have to be. But for the average person, there would have been no reason to go to the doctor yet. That is why so many people end up with Stage IV cancer before they ever find it! ☹
So what do you do? Know your body. Get your check ups. Eat right. Exercise. Get rid of all the ick in your diet and lifestyle. I know, eat right and die anyway. Well, maybe you won’t die as soon. I am not afraid to die at all. I know where I’m going and with Whom I will be with. But I have a lot more living to do. I come from tough stock! You should have met my grandmother. My Mamie was an amazing woman who taught all of us by example how to love God and family, how to work, how to serve, how to be joyful, and how to never give up. I’d like to make her proud.
“Not lagging in diligence, fervent in spirit, serving the Lord; rejoicing in hope, patient in tribulation, continuing steadfastly in prayer;
distributing to the needs of the saints, given to hospitality.”
Romans 12:11-13
“The Lord bless you and keep you;
The Lord make His face shine upon you,
And be gracious to you;
The Lord lift up His countenance upon you,
And give you peace.”
Numbers 6:24-26
June 15, 2017
Pride Goes Before the Fall…Proverbs 16:18
Let me start by saying that this is not a fun post. It’s heavy. This topic has been heavy on my heart for quite some time. Yesterday, the thoughts could not be stopped and I made a few notes between appointments with my mom.
The consequences of pride and selfishness are some of the most harmful I’ve ever seen. Yet we as Christians seem to glaze over them and not consider those sins as “sinful” as others might be. But the decay of relationship over years of rotten, unchecked habits is destroying the root of our society…our families.
There can be both positive and negative connotations of pride. It is good to take pride in your work, children, family, hobbies, etc. (ie. pleasure, joy, delight, gratification, fulfillment…). But pride out of control is defined as having an excessively high opinion of oneself, of one’s importance: “the sin of pride” (ie. arrogance, vanity, self-importance, hubris, conceit…).
The Bible has much to say about pride. This is just a bit.
“But he gives us more grace. That is why Scripture says:
“God opposes the proud but shows favor to the humble.”
James 4:6
“Humble yourselves before the Lord, and he will lift you up.”
James 4:10
“This is what the Lord says: ‘Let not the wise boast of their wisdom or the strong boast of their strength or the rich boast of their riches.”
Jeremiah 9:23
“To fear the Lord is to hate evil; I hate pride and arrogance, evil behavior
and perverse speech.”
Proverbs 8:13
“When pride comes, then comes disgrace, but with humility comes wisdom.”
Proverbs 11:2
“Where there is strife, there is pride,
but wisdom is found in those who take advice.”
Proverbs 13:10
“For by the grace given me I say to every one of you: Do not think of yourself more highly than you ought, but rather think of yourself with sober judgment,
in accordance with the faith God has distributed to each of you.”
Romans 12:3
“Love is patient, love is kind. It does not envy, it does not boast, it is not proud.”
1 Corinthians 13:4
The definition of selfishness is one who is devoted to or caring only for oneself; concerned primarily with one’s own interests, benefits, welfare, etc, regardless of others…characterizied by or manifesting concern or care only for oneself (ie. self-interested, self-seeking, egotistical, self-centered, self-indulgent, mean, narcissistic).
God’s Word also has a great deal to say on this subject.
“Do nothing from selfishness or empty conceit, but with humility of mind regard one another as more important than yourselves; do not merely look out for your own personal interests, but also for the interests of others.”
Philippians 2:3-4
“For where jealousy and selfish ambition exist,
there is disorder and every evil thing.”
James 3:15
“and He died for all, so that they who live might no longer live for themselves,
but for him who died and rose again on their behalf.”
2 Corinthians 5:15
“Do not merely look out for your own personal interests, but also for the interests of others. Have this attitude in yourselves, which was also in Christ Jesus, who, although He existed in the form of God, did not regard equality with God a thing to be grasped, but emptied Himself, taking the form of a bond-servant, and being made in the likeness of men. Being found in appearance as a man, He humbled Himself by becoming obedient to the point of death, even death on a cross.”
Philippians 2:4-8
“(Love) does not dishonor others, it is not self-seeking, it is not easily angered,
it keeps no record of wrongs.”
1 Corinthians 13:5
It would seem that with so much being written and taught about these two topics that they would not be as dismissed as they seem to be. People don’t seem to consider these issues to be as serious as other more flagrant sins. But what do these two do within a relationship or within a family? What happens when a person consistently focuses on him or herself rather than their spouse and/or children? How many weddings have you attended where the preacher has recited the words of 1 Corinthians 13? “…Love suffers long and is kind; love does not envy; love does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. Love never fails….” Such a beautiful day. So many hopes and promises. Then you go home and discover that just maybe one of you didn’t get the memo! But love suffers long, so you wait and pray and hope and keep no record of wrongs. You protect and trust and hope, but it doesn’t change. And little by little, you lose the person you once were. Becoming…self-protective, artificial, empty, busy. Until, no more. But the cycle continues because sin gives birth and is reborn.
Who will break the cycle? Who will speak up? Who will mentor? Who will guide?
“Teach the older men to be temperate, worthy of respect, self-controlled, and sound in faith, in love and in endurance. Likewise, teach the older women to be reverent in the way they live, not to be slanderers or addicted to much wine, but to teach what is good. Then they can urge the younger…. In everything set them an example by doing what is good. In your teaching show integrity….”
Titus 2:2-7
I am very thankful for my sweetheart and for his patient kindness and servant heart. He is one of the most thoughtful and giving men I’ve ever known. I have a couple of cousins who are blessed to be married to men such as him. It does not make life perfect. Waves still crash upon our shore. But when a couple has a mutual giving, selfless, serving relationship, beautiful things happen to your heart.
“Give, and it will be given to you. A good measure, pressed down, shaken together and running over, will be poured into your lap. For with the measure you use, it will be measured to you."
Luke 6:38
If they only understood.
The consequences of pride and selfishness are some of the most harmful I’ve ever seen. Yet we as Christians seem to glaze over them and not consider those sins as “sinful” as others might be. But the decay of relationship over years of rotten, unchecked habits is destroying the root of our society…our families.
There can be both positive and negative connotations of pride. It is good to take pride in your work, children, family, hobbies, etc. (ie. pleasure, joy, delight, gratification, fulfillment…). But pride out of control is defined as having an excessively high opinion of oneself, of one’s importance: “the sin of pride” (ie. arrogance, vanity, self-importance, hubris, conceit…).
The Bible has much to say about pride. This is just a bit.
“But he gives us more grace. That is why Scripture says:
“God opposes the proud but shows favor to the humble.”
James 4:6
“Humble yourselves before the Lord, and he will lift you up.”
James 4:10
“This is what the Lord says: ‘Let not the wise boast of their wisdom or the strong boast of their strength or the rich boast of their riches.”
Jeremiah 9:23
“To fear the Lord is to hate evil; I hate pride and arrogance, evil behavior
and perverse speech.”
Proverbs 8:13
“When pride comes, then comes disgrace, but with humility comes wisdom.”
Proverbs 11:2
“Where there is strife, there is pride,
but wisdom is found in those who take advice.”
Proverbs 13:10
“For by the grace given me I say to every one of you: Do not think of yourself more highly than you ought, but rather think of yourself with sober judgment,
in accordance with the faith God has distributed to each of you.”
Romans 12:3
“Love is patient, love is kind. It does not envy, it does not boast, it is not proud.”
1 Corinthians 13:4
The definition of selfishness is one who is devoted to or caring only for oneself; concerned primarily with one’s own interests, benefits, welfare, etc, regardless of others…characterizied by or manifesting concern or care only for oneself (ie. self-interested, self-seeking, egotistical, self-centered, self-indulgent, mean, narcissistic).
God’s Word also has a great deal to say on this subject.
“Do nothing from selfishness or empty conceit, but with humility of mind regard one another as more important than yourselves; do not merely look out for your own personal interests, but also for the interests of others.”
Philippians 2:3-4
“For where jealousy and selfish ambition exist,
there is disorder and every evil thing.”
James 3:15
“and He died for all, so that they who live might no longer live for themselves,
but for him who died and rose again on their behalf.”
2 Corinthians 5:15
“Do not merely look out for your own personal interests, but also for the interests of others. Have this attitude in yourselves, which was also in Christ Jesus, who, although He existed in the form of God, did not regard equality with God a thing to be grasped, but emptied Himself, taking the form of a bond-servant, and being made in the likeness of men. Being found in appearance as a man, He humbled Himself by becoming obedient to the point of death, even death on a cross.”
Philippians 2:4-8
“(Love) does not dishonor others, it is not self-seeking, it is not easily angered,
it keeps no record of wrongs.”
1 Corinthians 13:5
It would seem that with so much being written and taught about these two topics that they would not be as dismissed as they seem to be. People don’t seem to consider these issues to be as serious as other more flagrant sins. But what do these two do within a relationship or within a family? What happens when a person consistently focuses on him or herself rather than their spouse and/or children? How many weddings have you attended where the preacher has recited the words of 1 Corinthians 13? “…Love suffers long and is kind; love does not envy; love does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. Love never fails….” Such a beautiful day. So many hopes and promises. Then you go home and discover that just maybe one of you didn’t get the memo! But love suffers long, so you wait and pray and hope and keep no record of wrongs. You protect and trust and hope, but it doesn’t change. And little by little, you lose the person you once were. Becoming…self-protective, artificial, empty, busy. Until, no more. But the cycle continues because sin gives birth and is reborn.
Who will break the cycle? Who will speak up? Who will mentor? Who will guide?
“Teach the older men to be temperate, worthy of respect, self-controlled, and sound in faith, in love and in endurance. Likewise, teach the older women to be reverent in the way they live, not to be slanderers or addicted to much wine, but to teach what is good. Then they can urge the younger…. In everything set them an example by doing what is good. In your teaching show integrity….”
Titus 2:2-7
I am very thankful for my sweetheart and for his patient kindness and servant heart. He is one of the most thoughtful and giving men I’ve ever known. I have a couple of cousins who are blessed to be married to men such as him. It does not make life perfect. Waves still crash upon our shore. But when a couple has a mutual giving, selfless, serving relationship, beautiful things happen to your heart.
“Give, and it will be given to you. A good measure, pressed down, shaken together and running over, will be poured into your lap. For with the measure you use, it will be measured to you."
Luke 6:38
If they only understood.
May 17, 2017
Just When You Think You Have Things Figured Out…
Today was my appointment to meet with Dr. H and the MUD (transplant) Coordinator and go over the details of my upcoming DLI (Donor Lymphocyte Infusion). For those of you keeping up with all the abbreviations connected with my disease and treatment plans, you get a cookie! Call Bethany! ☺
As of right now, the DLI is scheduled for July 26 with Rituxan infusions scheduled the two Fridays before and after. I’ll be getting a PICC line (Peripherally Inserted Central Catheter) since my veins are 1) so small, 2) so wiggly 3) so tired and 4) I will be receiving so much stuff in such a short period of time. This will definitely be so much easier on me.
However, and here’s the main reason for me still being awake and writing this post tonight, none of this will even happen if this RASH turns out to be what my doctor and I both think it might be. GvHD...Graft versus Host Disease. Yep. Well, how on earth could I possibly have GvHD before I even have anything done, you ask?! Good question! I did have something done…five years ago! And I’ve already had mild GvHD. I asked my doctor today if she thought my mixed up chimerism and increasing lymphocytes might have gotten together and decided to revolt? While a long shot, she said it was definitely possible. Normally, if a transplant patient were going to have ongoing chronic GvHD, they would have continuing visible symptoms. I haven’t. I have had rashes a few times, but not continually. I have also had some minor stomach issues (gut GvHD), but again nothing ongoing.
So what does this mean and how does it affect the DLI. Two fold. First of all, if it is indeed GvHD, the DLI has to be cancelled because I have to be GvHD free for at least six months before treatment. Second, the DLI might not end up being necessary (at this time) IF the rash is GvHD and IF the GvHD prompts the GvT(L) effect. WHAT? You’re killing me, Tamara! There is a negative and a positive side to GvHD. We want a little of it so we know that the donor cells are doing their job. We just don’t want so much where they try and kill me! GvT(L) stands for Graft verses Tumor (or in my case Leukemia) effect where the donor cells seek and destroy the remaining bad guys. So the balance is for the donor cells to kill the bad guys without killing me (the host) in the crossfire.
The possible crazy, miraculous positive that we should be finding out with Friday’s biopsy is whether or not this rash is GvHD. Then we can pray for the GvL effect to take off and perhaps God will choose to miraculously (I can’t think of another word) get my numbers back on track without going through treatment! If it is just a rash, please pray that they can get it under control quickly and we can move on with the plan as it stands now. I’m good either way. God already knows the outcome. I’m just here for the ride. And it always seems a bit crazy from this side!
Stay tuned.
As of right now, the DLI is scheduled for July 26 with Rituxan infusions scheduled the two Fridays before and after. I’ll be getting a PICC line (Peripherally Inserted Central Catheter) since my veins are 1) so small, 2) so wiggly 3) so tired and 4) I will be receiving so much stuff in such a short period of time. This will definitely be so much easier on me.
However, and here’s the main reason for me still being awake and writing this post tonight, none of this will even happen if this RASH turns out to be what my doctor and I both think it might be. GvHD...Graft versus Host Disease. Yep. Well, how on earth could I possibly have GvHD before I even have anything done, you ask?! Good question! I did have something done…five years ago! And I’ve already had mild GvHD. I asked my doctor today if she thought my mixed up chimerism and increasing lymphocytes might have gotten together and decided to revolt? While a long shot, she said it was definitely possible. Normally, if a transplant patient were going to have ongoing chronic GvHD, they would have continuing visible symptoms. I haven’t. I have had rashes a few times, but not continually. I have also had some minor stomach issues (gut GvHD), but again nothing ongoing.
So what does this mean and how does it affect the DLI. Two fold. First of all, if it is indeed GvHD, the DLI has to be cancelled because I have to be GvHD free for at least six months before treatment. Second, the DLI might not end up being necessary (at this time) IF the rash is GvHD and IF the GvHD prompts the GvT(L) effect. WHAT? You’re killing me, Tamara! There is a negative and a positive side to GvHD. We want a little of it so we know that the donor cells are doing their job. We just don’t want so much where they try and kill me! GvT(L) stands for Graft verses Tumor (or in my case Leukemia) effect where the donor cells seek and destroy the remaining bad guys. So the balance is for the donor cells to kill the bad guys without killing me (the host) in the crossfire.
The possible crazy, miraculous positive that we should be finding out with Friday’s biopsy is whether or not this rash is GvHD. Then we can pray for the GvL effect to take off and perhaps God will choose to miraculously (I can’t think of another word) get my numbers back on track without going through treatment! If it is just a rash, please pray that they can get it under control quickly and we can move on with the plan as it stands now. I’m good either way. God already knows the outcome. I’m just here for the ride. And it always seems a bit crazy from this side!
Stay tuned.
April 29, 2017
Redeeming the Time
A lot of folks have “bucket lists” of things they would like to do, places they would like to go, before it’s too late. But there’s a difference between a list of things you’d like to do and a list of things you’d like to be.
This week, the church family I grew up with gathered to remember the life of a man taken much too soon, much too suddenly. He was only 49. Our lifelong friend, Donny McGinty, brought the Word at the service and I knew it was cultivating something in my heart that I would need to share.
He talked about “redeeming the time.” In Ephesians 5:15-16 we read,
“Be very careful, then, how you live—not as unwise but as wise, making the most of every opportunity, because the days are evil.”
If you read the verses just before these, you’ll see in verses 8-10,
“For you were once in darkness, but now you are light in the Lord. Live as children of light (for the fruit of the light consists in all goodness, righteousness and truth) and find out what pleases the Lord.”
Paul, the apostle, goes on in Colossians to write in chapter 4, verse 5,
“Be wise in the way you act toward outsiders; make the most of every opportunity. Let your conversation be always full of grace, seasoned with salt, so that you may know how to answer everyone.”
Make the most of every opportunity.
In the sudden loss of our friend last week, we were all reminded that only God knows the day and hour that our lives will end. Being one who has faced and considered death on perhaps a bit tighter timeline than many others gives me a little different perspective. For the past five and a half years, my outlook on life and on its day to day challenges has continued to change, deepen, and grow as I have learned to look for the better things and to “make the most of every opportunity.”
As Donny spoke about redeeming the time, he referred to it in several aspects. First was in respect to forgiveness. In Psalm 103:12, we read God’s example of forgiveness…
“As far as the east is from the west, so far has he removed our
transgressions from us.”
In Ephesians 4:31-32, He commands us,
“Get rid of all bitterness, rage and anger, brawling and slander, along with every form of malice. Be kind and compassionate to one another, forgiving each other, just as in Christ God forgave you.”
To redeem the time in our lives, we need to make peace and settle issues within ourselves. Forgiveness starts in our own hearts…not with the other person.
Redeeming the time also involves a heart of service. The Bible has a great deal to say about service.
“You, my brothers and sisters, were called to be free. But do not use your freedom to indulge the flesh; rather, serve one another humbly in love.”
Galatians 5:13
“Each of you should use whatever gift you have received to serve others,
as faithful stewards of God’s grace in its various forms.”
1 Peter 4:10
“…and whoever wants to be first must be your slave—just as the Son of Man did not come to be served, but to serve, and to give his life as a ransom for many.”
Matthew 20:27-28
“Therefore, I urge you, brothers and sisters, in view of God’s mercy, to offer your bodies as a living sacrifice, holy and pleasing to God—this is your true and proper worship.”
Romans 12:1
“Whatever you do, work at it with all your heart, as working for the Lord, not for men, since you know that you will receive an inheritance from the Lord.”
Colossians 3:23
Redeem the time in relationships and love.
“Love must be sincere. Hate what is evil; cling to what is good. Be devoted to one another in love. Honor one another above yourselves. Never be lacking in zeal, but keep your spiritual fervor, serving the Lord. Be joyful in hope, patient in affliction, faithful in prayer. Share with the Lord’s people who are in need. Practice hospitality.
Romans 12:9-13
“Do unto others as you would have them do to you.”
Luke 6:31
“The second is this: ‘Love your neighbor as yourself.’
There is no commandment greater than these.”
Mark 12:31
“Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres.
Love never fails.”
1 Corinthians 13:4-8a
Redeeming the time includes encouraging others.
"Therefore encourage one another and build each other up….”
1 Thessalonians 5:11
“Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles,
so that we can comfort those in any trouble with the comfort we
ourselves receive from God.”
2 Corinthians 1:3-4
Redeeming the time is realizing and appreciating God’s good gifts.
“How abundant are the good things that you have stored up for those who fear you, that you bestow in the sight of all, on those who take refuge in you.”
Psalm 31:19
“Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.”
James 1:17
“For God so loved the world that He gave His one and only Son, that whoever believes in Him shall not perish but have eternal life.”
John 3:16
“The Spirit and the bride say, “Come!” And let the one who hears say, “Come!” Let the one who is thirsty come, and let the one who wishes
take the free gift of the water of life.”
Revelation 22:17
So as we consider our own lives and the unknown days God grants us, may we redeem the time by living a life full of forgiveness, full of service, full of love, full of encouragement, and full of the understanding of God’s good gifts.
“Let your speech be always full of grace, seasoned with salt,
so that you may know how to answer everyone.”
Colossians 4:6
How? Well, that’s for another day.
This week, the church family I grew up with gathered to remember the life of a man taken much too soon, much too suddenly. He was only 49. Our lifelong friend, Donny McGinty, brought the Word at the service and I knew it was cultivating something in my heart that I would need to share.
He talked about “redeeming the time.” In Ephesians 5:15-16 we read,
“Be very careful, then, how you live—not as unwise but as wise, making the most of every opportunity, because the days are evil.”
If you read the verses just before these, you’ll see in verses 8-10,
“For you were once in darkness, but now you are light in the Lord. Live as children of light (for the fruit of the light consists in all goodness, righteousness and truth) and find out what pleases the Lord.”
Paul, the apostle, goes on in Colossians to write in chapter 4, verse 5,
“Be wise in the way you act toward outsiders; make the most of every opportunity. Let your conversation be always full of grace, seasoned with salt, so that you may know how to answer everyone.”
Make the most of every opportunity.
In the sudden loss of our friend last week, we were all reminded that only God knows the day and hour that our lives will end. Being one who has faced and considered death on perhaps a bit tighter timeline than many others gives me a little different perspective. For the past five and a half years, my outlook on life and on its day to day challenges has continued to change, deepen, and grow as I have learned to look for the better things and to “make the most of every opportunity.”
As Donny spoke about redeeming the time, he referred to it in several aspects. First was in respect to forgiveness. In Psalm 103:12, we read God’s example of forgiveness…
“As far as the east is from the west, so far has he removed our
transgressions from us.”
In Ephesians 4:31-32, He commands us,
“Get rid of all bitterness, rage and anger, brawling and slander, along with every form of malice. Be kind and compassionate to one another, forgiving each other, just as in Christ God forgave you.”
To redeem the time in our lives, we need to make peace and settle issues within ourselves. Forgiveness starts in our own hearts…not with the other person.
Redeeming the time also involves a heart of service. The Bible has a great deal to say about service.
“You, my brothers and sisters, were called to be free. But do not use your freedom to indulge the flesh; rather, serve one another humbly in love.”
Galatians 5:13
“Each of you should use whatever gift you have received to serve others,
as faithful stewards of God’s grace in its various forms.”
1 Peter 4:10
“…and whoever wants to be first must be your slave—just as the Son of Man did not come to be served, but to serve, and to give his life as a ransom for many.”
Matthew 20:27-28
“Therefore, I urge you, brothers and sisters, in view of God’s mercy, to offer your bodies as a living sacrifice, holy and pleasing to God—this is your true and proper worship.”
Romans 12:1
“Whatever you do, work at it with all your heart, as working for the Lord, not for men, since you know that you will receive an inheritance from the Lord.”
Colossians 3:23
Redeem the time in relationships and love.
“Love must be sincere. Hate what is evil; cling to what is good. Be devoted to one another in love. Honor one another above yourselves. Never be lacking in zeal, but keep your spiritual fervor, serving the Lord. Be joyful in hope, patient in affliction, faithful in prayer. Share with the Lord’s people who are in need. Practice hospitality.
Romans 12:9-13
“Do unto others as you would have them do to you.”
Luke 6:31
“The second is this: ‘Love your neighbor as yourself.’
There is no commandment greater than these.”
Mark 12:31
“Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres.
Love never fails.”
1 Corinthians 13:4-8a
Redeeming the time includes encouraging others.
"Therefore encourage one another and build each other up….”
1 Thessalonians 5:11
“Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles,
so that we can comfort those in any trouble with the comfort we
ourselves receive from God.”
2 Corinthians 1:3-4
Redeeming the time is realizing and appreciating God’s good gifts.
“How abundant are the good things that you have stored up for those who fear you, that you bestow in the sight of all, on those who take refuge in you.”
Psalm 31:19
“Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.”
James 1:17
“For God so loved the world that He gave His one and only Son, that whoever believes in Him shall not perish but have eternal life.”
John 3:16
“The Spirit and the bride say, “Come!” And let the one who hears say, “Come!” Let the one who is thirsty come, and let the one who wishes
take the free gift of the water of life.”
Revelation 22:17
So as we consider our own lives and the unknown days God grants us, may we redeem the time by living a life full of forgiveness, full of service, full of love, full of encouragement, and full of the understanding of God’s good gifts.
“Let your speech be always full of grace, seasoned with salt,
so that you may know how to answer everyone.”
Colossians 4:6
How? Well, that’s for another day.
April 19, 2017
If Your First Name is “United”…
With all the negative press of late surrounding United Airlines, I thought I’d share a little of my own drama about another “United”…United Health Care. Today, my daughter, Bethany, drove down from Dallas to Houston to attend the funeral of the mom of one of her high school youth group friends. As I was waiting for her to swing by afterwards and have lunch with my mom and me before heading home, I was sorting through the mail. I opened a letter from United Health Care, one of many that we get on a regular basis…usually noting all my individual tests, labs, etc.
This one caught my attention because right in the middle of the page it read,
“Type of Treatment…Hematopoietic progenitor cell (HPC); allogeneic transplantation per donor.” Oh, wow! This is the approval letter for my DLI, donor lymphocyte infusion. It’s not worded quite the same, but that’s what this is!! Then I looked at the previous section noting the details and one line stood out.
DOLLAR AMOUNT: $0.00
What?!?! What do you mean $0.00???!!!! I read the letter front and back, over and over, and it continued to say $0.00! Needless to say, I was in shock, overwhelmed, mad, upset, worried, totally in control, and losing my mind. I called my handy customer service number and spoke to Kristen (who I am going to officially adopt!). I explained the letter I had just received and read. I told her about my leukemia, my 2012 stem cell transplant (which Blue Cross Blue Shield paid for), my 2015 CAR T-Cell trial (which UHC paid for), and how the ENTIRE STEM CELL TEAM AT MD Anderson had agreed that this procedure was what I needed so that I could hopefully live more than two years or so. I said that there is a small window in which to do this procedure because I still need to HAVE donor cells left to boost! If they choose to deny this request for coverage, they are basically signing my death sentence.
She asked if I minded holding for 3-5 minutes? “No. I’d be happy to.” During this time, Bethany got home, made our sandwiches, and the three of us were sitting at the table. At that point, I asked her to pray. She and mom started praying, not just for lunch but for this situation, for these people making a life or death decision. My life! Before Bethany even finished praying, Kristen came back on the phone and thanked me for holding. She said that there had been a horrible mistake and offered her most heartfelt apology. My procedure WAS, indeed, deemed medically necessary and the acceptance letter had already been mailed to MD Anderson. The letter I had received in error was for an incorrect procedure code or something. I asked if she could please send me a copy of the acceptance letter for my files. ☺
I had maintained my composure this entire time. Once the call (and the survey) were complete, I totally lost it. Tears of relief and “what if’s” flowed. Even though this procedure was not what we had originally planned for, we are convinced that it is what God has for me, and I was devastated to think that the financial hand of man could thwart the plan of God. How silly of me! Nothing can hinder the hand of God.
So it is with a deep breath and sigh of relief that we forge ahead. Insurance…check. Donor…check, check. Our God, Savior, Redeemer, One Who Walks with us every step of the way…check, check, check!
This one caught my attention because right in the middle of the page it read,
“Type of Treatment…Hematopoietic progenitor cell (HPC); allogeneic transplantation per donor.” Oh, wow! This is the approval letter for my DLI, donor lymphocyte infusion. It’s not worded quite the same, but that’s what this is!! Then I looked at the previous section noting the details and one line stood out.
DOLLAR AMOUNT: $0.00
What?!?! What do you mean $0.00???!!!! I read the letter front and back, over and over, and it continued to say $0.00! Needless to say, I was in shock, overwhelmed, mad, upset, worried, totally in control, and losing my mind. I called my handy customer service number and spoke to Kristen (who I am going to officially adopt!). I explained the letter I had just received and read. I told her about my leukemia, my 2012 stem cell transplant (which Blue Cross Blue Shield paid for), my 2015 CAR T-Cell trial (which UHC paid for), and how the ENTIRE STEM CELL TEAM AT MD Anderson had agreed that this procedure was what I needed so that I could hopefully live more than two years or so. I said that there is a small window in which to do this procedure because I still need to HAVE donor cells left to boost! If they choose to deny this request for coverage, they are basically signing my death sentence.
She asked if I minded holding for 3-5 minutes? “No. I’d be happy to.” During this time, Bethany got home, made our sandwiches, and the three of us were sitting at the table. At that point, I asked her to pray. She and mom started praying, not just for lunch but for this situation, for these people making a life or death decision. My life! Before Bethany even finished praying, Kristen came back on the phone and thanked me for holding. She said that there had been a horrible mistake and offered her most heartfelt apology. My procedure WAS, indeed, deemed medically necessary and the acceptance letter had already been mailed to MD Anderson. The letter I had received in error was for an incorrect procedure code or something. I asked if she could please send me a copy of the acceptance letter for my files. ☺
I had maintained my composure this entire time. Once the call (and the survey) were complete, I totally lost it. Tears of relief and “what if’s” flowed. Even though this procedure was not what we had originally planned for, we are convinced that it is what God has for me, and I was devastated to think that the financial hand of man could thwart the plan of God. How silly of me! Nothing can hinder the hand of God.
So it is with a deep breath and sigh of relief that we forge ahead. Insurance…check. Donor…check, check. Our God, Savior, Redeemer, One Who Walks with us every step of the way…check, check, check!
April 15, 2017
Take Up My Cross and Follow Him
A couple weeks ago at church, our music minister filled in for our senior pastor in the pulpit. Caleb shared with me that he and the Lord had been able to spend months preparing for this message and wondered and admired how Dean does this every week! ☺ The Lord did, indeed, use Caleb that day…especially in my heart…as I am still thinking on the verses and thoughts that he shared. They were especially poignant leading up to the verses that were read last night at the Good Friday service.
We have been studying the book of Matthew and we were in chapter 16 when Jesus was speaking to the disciples about what was about to happen to him. In verses 24-26 it reads,
“Then Jesus said to his disciples, ‘If anyone would come after me, he must deny himself and take up his cross and follow me. For whosoever wants to save his life will lose it, but whosoever loses his life for me will find it. What good will it be for a man if he gains the whole world, yet forfeits his soul? Or what can a man give in exchange for his soul?”
The question was posed if we had ever considered what it meant for us to “take up our cross?” The majority of us have never endured the pain, torture, humiliation, and persecution that the cross represents. So how do we take up our cross and follow Him? The cross for Christ meant ultimate forgiveness for a world of people who didn’t deserve or even ask for it. He willingly offered forgiveness because He and the Father have a covenant relationship with His created people. He loves us and wants us to be restored to Him...and paid the ultimate sacrifice for it. Covenant relationships start with forgiveness. That is our cross. We don’t want to forgive. We want to hold on to our grievances, our pride, our justice, our pain. In the process, we lose family, friends, church members…we lose relationship.
“Then Peter came to Jesus and asked, “Lord, how many times shall I forgive my brother when he sins against me? Up to seven times? “Jesus answered,
“I tell you, not seven times, but seventy-seven times.”
Matthew 18: 21-22
“Love is patient, love is kind. It does not envy, it does not boast, it is not proud.
It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth.”
1 Corinthians 13:4-6
“Get rid of all bitterness, rage and anger, brawling and slander, along with every form of malice. Be kind and compassionate to one another, forgiving each other, just as in Christ God forgave you.”
Ephesians 4:31-32
“Who has believed our report and to whom has the arm of the Lord been revealed? He grew up before him like a tender shoot, and like a root out of dry ground. He had no beauty or majesty to attract us to him, nothing in his appearance that we should desire him. He was despised and rejected by men, a man of sorrows, and familiar with suffering. Like one from whom men hide their faces he was despised, and we esteemed him not. Surely he took up our infirmities and carried our sorrows, yet we considered him stricken by God, smitten by him, and afflicted. But he was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was upon him, and by his wounds we are healed. We all, like sheep, have gone astray, each of us has turned to his own way; and the Lord has laid on him the iniquity of us all. He was oppressed and afflicted, yet he did not open his mouth; he was led like a lamb to the slaughter, and as a sheep before her shearers is silent, so he did not open his mouth. By oppression and judgment he was taken away. And who can speak of his descendants? For he was cut off from the land of the living; for the transgression of my people he was stricken. He was assigned a grave with the wicked, and with the rich in his death, though he had done no violence, nor was any deceit in his mouth. Yet it was the Lord’s will to crush him and cause him to suffer, and though the Lord makes his life a guilt offering, he will see his offspring and prolong his days, and the will of the Lord will prosper in his hand. After the suffering of his soul, he will see the light of life and be satisfied, by his knowledge my righteous servant will justify many, and he will bear their iniquities. Therefore I will give him a portion among the great, and he will divide the spoils with the strong, because he poured out his life unto death, and was numbered with the transgressors. For he bore the sin of many, and made intercession for the transgressors.”
Isaiah 53
“If anyone would come after me, he must deny himself and take up his cross and follow me.”
We have been studying the book of Matthew and we were in chapter 16 when Jesus was speaking to the disciples about what was about to happen to him. In verses 24-26 it reads,
“Then Jesus said to his disciples, ‘If anyone would come after me, he must deny himself and take up his cross and follow me. For whosoever wants to save his life will lose it, but whosoever loses his life for me will find it. What good will it be for a man if he gains the whole world, yet forfeits his soul? Or what can a man give in exchange for his soul?”
The question was posed if we had ever considered what it meant for us to “take up our cross?” The majority of us have never endured the pain, torture, humiliation, and persecution that the cross represents. So how do we take up our cross and follow Him? The cross for Christ meant ultimate forgiveness for a world of people who didn’t deserve or even ask for it. He willingly offered forgiveness because He and the Father have a covenant relationship with His created people. He loves us and wants us to be restored to Him...and paid the ultimate sacrifice for it. Covenant relationships start with forgiveness. That is our cross. We don’t want to forgive. We want to hold on to our grievances, our pride, our justice, our pain. In the process, we lose family, friends, church members…we lose relationship.
“Then Peter came to Jesus and asked, “Lord, how many times shall I forgive my brother when he sins against me? Up to seven times? “Jesus answered,
“I tell you, not seven times, but seventy-seven times.”
Matthew 18: 21-22
“Love is patient, love is kind. It does not envy, it does not boast, it is not proud.
It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth.”
1 Corinthians 13:4-6
“Get rid of all bitterness, rage and anger, brawling and slander, along with every form of malice. Be kind and compassionate to one another, forgiving each other, just as in Christ God forgave you.”
Ephesians 4:31-32
“Who has believed our report and to whom has the arm of the Lord been revealed? He grew up before him like a tender shoot, and like a root out of dry ground. He had no beauty or majesty to attract us to him, nothing in his appearance that we should desire him. He was despised and rejected by men, a man of sorrows, and familiar with suffering. Like one from whom men hide their faces he was despised, and we esteemed him not. Surely he took up our infirmities and carried our sorrows, yet we considered him stricken by God, smitten by him, and afflicted. But he was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was upon him, and by his wounds we are healed. We all, like sheep, have gone astray, each of us has turned to his own way; and the Lord has laid on him the iniquity of us all. He was oppressed and afflicted, yet he did not open his mouth; he was led like a lamb to the slaughter, and as a sheep before her shearers is silent, so he did not open his mouth. By oppression and judgment he was taken away. And who can speak of his descendants? For he was cut off from the land of the living; for the transgression of my people he was stricken. He was assigned a grave with the wicked, and with the rich in his death, though he had done no violence, nor was any deceit in his mouth. Yet it was the Lord’s will to crush him and cause him to suffer, and though the Lord makes his life a guilt offering, he will see his offspring and prolong his days, and the will of the Lord will prosper in his hand. After the suffering of his soul, he will see the light of life and be satisfied, by his knowledge my righteous servant will justify many, and he will bear their iniquities. Therefore I will give him a portion among the great, and he will divide the spoils with the strong, because he poured out his life unto death, and was numbered with the transgressors. For he bore the sin of many, and made intercession for the transgressors.”
Isaiah 53
“If anyone would come after me, he must deny himself and take up his cross and follow me.”
April 5, 2017
Timing & The Bucket List
When your doctor calls and drops the kind of news on you that we received recently, you begin to think through all the things you want to do before the big day comes. From the very beginning of this journey, we have been positive, believing, confident in the hope we have in God. Nothing has changed. We still covet your prayers and lay the results at His Feet. We expect the best. But we are not so naïve to realize that things do not always turn out the way we hope and plan. I have lost two very dear friends, plus countless other family and friends, to this dreaded disease. But these two were walking a road very similar to mine. These were the most difficult to accept and move forward.
So now it’s my turn to subject myself again to the wonderful, healing, scary, sometimes deadly hand of treatment. Since my disease is chronic and not acute, I am not dying this month, unless I get hit by a bus! This allows me to choose when I want to schedule my DLI (somewhat), which is actually a process rather than a one-day occurrence. (They give you a little of the cells at a time and then watch and test you to make sure that your organs aren’t going crazy and rejecting everything.)
Anyway, back to timing. First comes our anniversary at the end of May. We have always taken trips that include some type of hiking. Last year, it was fairly minimal due to my knees and inability to walk very far, but we did as much as we could. This year, we will be heading to Wichita Falls for my cousin’s daughter’s wedding the weekend after our anniversary, so we will combine that with our anniversary trip. We have been holding out hope that we would be able to go to Palo Dura Canyon, near Amarillo, this year if my knee healed well enough. After receiving the news of the upcoming treatment, we decided that my knee was good enough! We were going come hell or high water! ☺ Paul said he would carry me if he had to. (Pray that he doesn’t have to!!) We both have camel back (water) backpacks and new tripod stools for if (and when) I need a break. Just like when we climbed Enchanted Rock back in 2014 and I felt that immense sense of accomplishment, we’re going to do it again! We need this, together…before the DLI. So Bucket List #1…Palo Dura Canyon.
Back when my great niece was 8, almost 9, Mama O and I took her to New York City. It was an awesome trip! For all of Dana’s young life, she has been asking when can I take HER to New York?! My daughter, Bethany, and I both LOVE New York and Dana is turning 10 this summer. With Mama O’s health decline, I’m not sure of her ability to make another trip. We’re waiting to see what this week’s appointment tells us. But our hope is that either all four, or at least the three, of us will be able to make that epic trek to the Big Apple as a surprise for Dana’s tenth birthday…a bit early. This one is going to be a bit harder to pull off as it is a bit pricier, and none of us have won the lottery! We are thinking, figuring, ciphering, saving, hoping, praying, and trying to make this happen. This would be a huge Bucket List item for me and my girls. Bucket List #2…New York.
If there is time before MDA gets me scheduled, there is one other trip I’d love to take. It may sound silly to those of you who don’t have grandchildren, but I would love to be able to go with as many of my kids and grandkids as possible to the Crater of Diamonds State Park in Arkansas. It’s just a hop and a skip past Texarkana. It is very affordable. You can dig for diamonds, amethyst, garnet, jasper, agate, quartz, and more rocks and minerals. There are hiking trails and a small water park next door. This would be SO MUCH FUN!!! I want to make as many memories with my grandkids as possible. Bucket List #3…Crater of Diamonds Trip
Throughout all of this, we need to get my mom well and independent again. Please pray for our upcoming appointment on Thursday. She is bound and determined to go home. We want that for her, as well. But we want it under the best conditions. This corresponds to Bucket List #4…Time in the Country. We need things to be in order here to free up time for us to spend time away.
Our Bucket List is actually much longer than this and includes things like Paul’s early retirement, building our home and shop in the country, buying a bigger mill so we can have a retirement business that we really enjoy, can do together, and doesn’t kill Paul’s back, traveling, etc. But right now, it seems prudent to focus on the next 2-8 months rather than the next 2-8 years. God willing, we’ll get there. But as always…one day, one step, one prayer at a time.
“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”
Jeremiah 29:11
“Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom.
He gives strength to the weary and increases the power of the weak.
Even youths grow tired and weary, and young men stumble and fall;
but those who hope in the LORD will renew their strength.
They will soar on wings like eagles; they will run and not grow weary,
they will walk and not be faint.”
Isaiah 40:28-31
“I love you, LORD, my strength.
The LORD is my rock, my fortress and my deliverer;
my God is my rock, in whom I take refuge,
my shield and the horn of my salvation, my stronghold….
For who is God besides the LORD?
And who is the Rock except our God?
It is God who arms me with strength
and keeps my way secure.
He makes my feet like the feet of a deer;
he causes me to stand on the heights.
He trains my hands for battle;
my arms can bend a bow of bronze.
You make your saving help my shield,
and your right hand sustains me;
your help has made me great.
You provide a broad path for my feet,
so that my ankles do not give way….
Therefore I will praise you, LORD, among the nations;
I will sing the praises of your name.”
Psalm 18:1-2, 31-36, 49
So now it’s my turn to subject myself again to the wonderful, healing, scary, sometimes deadly hand of treatment. Since my disease is chronic and not acute, I am not dying this month, unless I get hit by a bus! This allows me to choose when I want to schedule my DLI (somewhat), which is actually a process rather than a one-day occurrence. (They give you a little of the cells at a time and then watch and test you to make sure that your organs aren’t going crazy and rejecting everything.)
Anyway, back to timing. First comes our anniversary at the end of May. We have always taken trips that include some type of hiking. Last year, it was fairly minimal due to my knees and inability to walk very far, but we did as much as we could. This year, we will be heading to Wichita Falls for my cousin’s daughter’s wedding the weekend after our anniversary, so we will combine that with our anniversary trip. We have been holding out hope that we would be able to go to Palo Dura Canyon, near Amarillo, this year if my knee healed well enough. After receiving the news of the upcoming treatment, we decided that my knee was good enough! We were going come hell or high water! ☺ Paul said he would carry me if he had to. (Pray that he doesn’t have to!!) We both have camel back (water) backpacks and new tripod stools for if (and when) I need a break. Just like when we climbed Enchanted Rock back in 2014 and I felt that immense sense of accomplishment, we’re going to do it again! We need this, together…before the DLI. So Bucket List #1…Palo Dura Canyon.
Back when my great niece was 8, almost 9, Mama O and I took her to New York City. It was an awesome trip! For all of Dana’s young life, she has been asking when can I take HER to New York?! My daughter, Bethany, and I both LOVE New York and Dana is turning 10 this summer. With Mama O’s health decline, I’m not sure of her ability to make another trip. We’re waiting to see what this week’s appointment tells us. But our hope is that either all four, or at least the three, of us will be able to make that epic trek to the Big Apple as a surprise for Dana’s tenth birthday…a bit early. This one is going to be a bit harder to pull off as it is a bit pricier, and none of us have won the lottery! We are thinking, figuring, ciphering, saving, hoping, praying, and trying to make this happen. This would be a huge Bucket List item for me and my girls. Bucket List #2…New York.
If there is time before MDA gets me scheduled, there is one other trip I’d love to take. It may sound silly to those of you who don’t have grandchildren, but I would love to be able to go with as many of my kids and grandkids as possible to the Crater of Diamonds State Park in Arkansas. It’s just a hop and a skip past Texarkana. It is very affordable. You can dig for diamonds, amethyst, garnet, jasper, agate, quartz, and more rocks and minerals. There are hiking trails and a small water park next door. This would be SO MUCH FUN!!! I want to make as many memories with my grandkids as possible. Bucket List #3…Crater of Diamonds Trip
Throughout all of this, we need to get my mom well and independent again. Please pray for our upcoming appointment on Thursday. She is bound and determined to go home. We want that for her, as well. But we want it under the best conditions. This corresponds to Bucket List #4…Time in the Country. We need things to be in order here to free up time for us to spend time away.
Our Bucket List is actually much longer than this and includes things like Paul’s early retirement, building our home and shop in the country, buying a bigger mill so we can have a retirement business that we really enjoy, can do together, and doesn’t kill Paul’s back, traveling, etc. But right now, it seems prudent to focus on the next 2-8 months rather than the next 2-8 years. God willing, we’ll get there. But as always…one day, one step, one prayer at a time.
“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”
Jeremiah 29:11
“Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom.
He gives strength to the weary and increases the power of the weak.
Even youths grow tired and weary, and young men stumble and fall;
but those who hope in the LORD will renew their strength.
They will soar on wings like eagles; they will run and not grow weary,
they will walk and not be faint.”
Isaiah 40:28-31
“I love you, LORD, my strength.
The LORD is my rock, my fortress and my deliverer;
my God is my rock, in whom I take refuge,
my shield and the horn of my salvation, my stronghold….
For who is God besides the LORD?
And who is the Rock except our God?
It is God who arms me with strength
and keeps my way secure.
He makes my feet like the feet of a deer;
he causes me to stand on the heights.
He trains my hands for battle;
my arms can bend a bow of bronze.
You make your saving help my shield,
and your right hand sustains me;
your help has made me great.
You provide a broad path for my feet,
so that my ankles do not give way….
Therefore I will praise you, LORD, among the nations;
I will sing the praises of your name.”
Psalm 18:1-2, 31-36, 49
April 2, 2017
HE SAID YES…Again!
In my last conversation with Dr. H, she let me know that the first step in the DLI process was to get insurance approval. We are with a different provider than we were when I had my transplant, so we are praying that all goes well with that conversation.
The second step is to reconnect with my donor to see if he is still available and willing to donate a second time. MD Anderson cannot reach out until the insurance is secured. Dr. H asked me if I had ever been in communication with my donor, and I told her that I had. I tried to send the required paperwork after my first stem cell anniversary, but it somehow didn’t connect. But the second year it did. So just before my two-year “Re-Birthday,” I was able to send him a long letter and he called me! It was the coolest thing ever!!! Anyway, Dr. H said that while they couldn’t contact him until everything was in order, I could!
So yesterday, I sent Richard, my mailman hero, an email recapping all that has been going on over the last few years…coming out of remission shortly after my 2-year “re-birthday” anniversary, the CAR T-Cell trial in 2015, my knee replacement in 2016, and the continued increase in my CLL numbers and decrease in my donor cell count over the past year. I let him know that the MDA stem cell team had recommended the DLI over other treatment (or non-treatment) options. And I asked if he would be willing to consider donating again. The prep time for him would not be as difficult as the first time, from what I understand. I let him know how very much this means to me, my husband, my family…. But no matter his decision, we knew this was in God’s hands.
This morning, he wrote me back to say that he would gladly help!! ☺ My heart leapt with joy and I immediately began to cry. The DLI could not happen without him. I could not use another donor. That would mean starting completely over with an entirely new transplant, which does not hold particularly good odds. The DLI is simply “boosting” the one I already had, with the goal of kicking down the growing cancer cells and increasing the healthy donor cells. Ultimately, the goal would be for me to be 100% Richard!! ☺ Or at least as close as possible…DNA/cell wise.
So today, our praise to God and thankful hearts is that HE SAID YES!!! Now we just have to wait for insurance approval and the right timing.
That is another story.
“Thanks be to God for his indescribable gift!”
2 Corinthians 9:15
The second step is to reconnect with my donor to see if he is still available and willing to donate a second time. MD Anderson cannot reach out until the insurance is secured. Dr. H asked me if I had ever been in communication with my donor, and I told her that I had. I tried to send the required paperwork after my first stem cell anniversary, but it somehow didn’t connect. But the second year it did. So just before my two-year “Re-Birthday,” I was able to send him a long letter and he called me! It was the coolest thing ever!!! Anyway, Dr. H said that while they couldn’t contact him until everything was in order, I could!
So yesterday, I sent Richard, my mailman hero, an email recapping all that has been going on over the last few years…coming out of remission shortly after my 2-year “re-birthday” anniversary, the CAR T-Cell trial in 2015, my knee replacement in 2016, and the continued increase in my CLL numbers and decrease in my donor cell count over the past year. I let him know that the MDA stem cell team had recommended the DLI over other treatment (or non-treatment) options. And I asked if he would be willing to consider donating again. The prep time for him would not be as difficult as the first time, from what I understand. I let him know how very much this means to me, my husband, my family…. But no matter his decision, we knew this was in God’s hands.
This morning, he wrote me back to say that he would gladly help!! ☺ My heart leapt with joy and I immediately began to cry. The DLI could not happen without him. I could not use another donor. That would mean starting completely over with an entirely new transplant, which does not hold particularly good odds. The DLI is simply “boosting” the one I already had, with the goal of kicking down the growing cancer cells and increasing the healthy donor cells. Ultimately, the goal would be for me to be 100% Richard!! ☺ Or at least as close as possible…DNA/cell wise.
So today, our praise to God and thankful hearts is that HE SAID YES!!! Now we just have to wait for insurance approval and the right timing.
That is another story.
“Thanks be to God for his indescribable gift!”
2 Corinthians 9:15
March 20, 2017
He Goes Before Us
As I mentioned in my last post, my doctor was planning on presenting my case to the whole team for a group opinion on what was the best plan of action for my cancer treatment. If you are one of my Facebook friends, you may have already read that she called me this past Friday with some rather unexpected news. Paul and I have had a little more time to think, pray, and research since then, so I wanted to share some of my thoughts with you and let you know where we are since the train hit us a few days ago.
First of all, the call. Dr. H called to first check on me (so sweet) and to let me know that the team had almost unanimously voted on the DLI (Donor Lymphocyte Infusion) over the targeted therapy drug Ibrutinib. Only my Leukemia doctor had voted for the drug. The entire stem cell team had voted for the DLI.
So what’s the difference and why would they make this choice? Good question! The DLI is a much riskier treatment choice, but it is the only option that offers another chance at remission…which could buy me longer life. The drug therapy, from what I’ve read, averages about two years symptom free progression before we would have to make another decision or before I could possibly be out of options. If I wait too long to do the DLI, I may not have high enough donor counts to “boost.” I might be at the point where the only option is a second full transplant, and the mortality rate for a second transplant is not nearly as high as the first.
So it seems their thinking is to try to get my donor count back up, try to get me back into remission if at all possible, and then save the Ibrutinib as my backup plan down the road if and when I have run out of options.
Just to help folks who are curious better understand the details of a DLI, here are the basic details of how it works. They start by preparing my body with Rituximab, a monoclonal antibody that targets the CD20 antigen on normal and malignant B-cells. Then the body’s natural immune defenses are recruited to attack and kill the marked B-cells. Stem cells do not have the CD20 antigen. This allows healthy B-cells to regenerate after treatment. (This drug also helps with GvHD.) The side effects are primarily while receiving the drug and do not continue on. The nickname for it is “Shake and Bake!” I did. Probably will again. But you get over it.
For the DLI, the original donor is again harvested (if willing and available, please pray). His lymphocytes, a sub-type of the white blood cell, are infused to augment an anti-tumor immune response to ensure that the donor stem cells remain engrafted. These donated white blood cells contain cells of the immune system that can recognize and destroy cancer cells. The goal of this therapy is to induce a remission of the patient’s cancer by a process called the “graft-verses-tumor” effect (GVT). The donor T-cells can attack and control the growth of residual cancer cells providing the GVT effect. Complications, as we have discussed before, include acute and chronic GvHD…graft-versus-host disease and bone marrow aplasia, resulting in immunosuppression and susceptibility to opportunistic infections. Other than that, it sounds like a great idea!! ☺
Our main fear has been the thought of GvHD. I have dealt with mild amounts of it after my transplant, but they were able to get it under control. When you have had a dear friend die of GvHD complications, those images are forever burned into your mind and it is difficult at best to choose to subject yourself to something that could result in the same end.
Then came Sunday.
We had offered to take my mom, who has been staying with us since her trip to the ER last Tuesday, to her church yesterday. But when she woke, she was not really feeling up to getting out yet and urged us to go on to our church and let her stay at home and rest. God had a reason for me to be at Creekside yesterday. When our pastor, Dean Wood, was preparing his sermon for this week, I’m certain that he did not correlate my situation with his passage. But God did.
We have just started studying the life of David…starting with getting to know Samuel, the introduction of King Saul, and this week we met Jonathan. We looked at the map of the terrain of the area, where the enemy was in comparison to Israel, how the Philistines were completely in a position of power over the Israelites.
“Jonathan said to his young armor-bearer, ‘Come, let’s go over to the outpost of those uncircumcised fellows. Perhaps the Lord will act in our behalf. Nothing can hinder the Lord from saving, whether by many or by few.’”
1 Samuel 14:6
“Perhaps the Lord will act in our behalf. Nothing can hinder the Lord from saving!” If God has purposed the victory, nothing can thwart it! Faith takes risks.
Jonathan and his armor-bearer went toward the Philistine camp and decided that if one of them asked them to “come up” then that would be a sign from God that He was going to deliver them into their hands. They did and He did! They slaughtered twenty men before the rest became confused by God. Then the Israelites saw what was happening and came in and drove out the rest. Victory…because one man said “perhaps the Lord will act in our behalf” and acted on it.
The Lord has been acting on our behalf for the past five and a half years. He has been graciously answering yes to the prayers of many faithful family and friends. So we are going to step out in faith as Jonathan did with his words on our tongues and in our hearts…
”Perhaps the Lord will act in our behalf. If God has purposed the victory, nothing can thwart it!”
Faith takes risks.
First of all, the call. Dr. H called to first check on me (so sweet) and to let me know that the team had almost unanimously voted on the DLI (Donor Lymphocyte Infusion) over the targeted therapy drug Ibrutinib. Only my Leukemia doctor had voted for the drug. The entire stem cell team had voted for the DLI.
So what’s the difference and why would they make this choice? Good question! The DLI is a much riskier treatment choice, but it is the only option that offers another chance at remission…which could buy me longer life. The drug therapy, from what I’ve read, averages about two years symptom free progression before we would have to make another decision or before I could possibly be out of options. If I wait too long to do the DLI, I may not have high enough donor counts to “boost.” I might be at the point where the only option is a second full transplant, and the mortality rate for a second transplant is not nearly as high as the first.
So it seems their thinking is to try to get my donor count back up, try to get me back into remission if at all possible, and then save the Ibrutinib as my backup plan down the road if and when I have run out of options.
Just to help folks who are curious better understand the details of a DLI, here are the basic details of how it works. They start by preparing my body with Rituximab, a monoclonal antibody that targets the CD20 antigen on normal and malignant B-cells. Then the body’s natural immune defenses are recruited to attack and kill the marked B-cells. Stem cells do not have the CD20 antigen. This allows healthy B-cells to regenerate after treatment. (This drug also helps with GvHD.) The side effects are primarily while receiving the drug and do not continue on. The nickname for it is “Shake and Bake!” I did. Probably will again. But you get over it.
For the DLI, the original donor is again harvested (if willing and available, please pray). His lymphocytes, a sub-type of the white blood cell, are infused to augment an anti-tumor immune response to ensure that the donor stem cells remain engrafted. These donated white blood cells contain cells of the immune system that can recognize and destroy cancer cells. The goal of this therapy is to induce a remission of the patient’s cancer by a process called the “graft-verses-tumor” effect (GVT). The donor T-cells can attack and control the growth of residual cancer cells providing the GVT effect. Complications, as we have discussed before, include acute and chronic GvHD…graft-versus-host disease and bone marrow aplasia, resulting in immunosuppression and susceptibility to opportunistic infections. Other than that, it sounds like a great idea!! ☺
Our main fear has been the thought of GvHD. I have dealt with mild amounts of it after my transplant, but they were able to get it under control. When you have had a dear friend die of GvHD complications, those images are forever burned into your mind and it is difficult at best to choose to subject yourself to something that could result in the same end.
Then came Sunday.
We had offered to take my mom, who has been staying with us since her trip to the ER last Tuesday, to her church yesterday. But when she woke, she was not really feeling up to getting out yet and urged us to go on to our church and let her stay at home and rest. God had a reason for me to be at Creekside yesterday. When our pastor, Dean Wood, was preparing his sermon for this week, I’m certain that he did not correlate my situation with his passage. But God did.
We have just started studying the life of David…starting with getting to know Samuel, the introduction of King Saul, and this week we met Jonathan. We looked at the map of the terrain of the area, where the enemy was in comparison to Israel, how the Philistines were completely in a position of power over the Israelites.
“Jonathan said to his young armor-bearer, ‘Come, let’s go over to the outpost of those uncircumcised fellows. Perhaps the Lord will act in our behalf. Nothing can hinder the Lord from saving, whether by many or by few.’”
1 Samuel 14:6
“Perhaps the Lord will act in our behalf. Nothing can hinder the Lord from saving!” If God has purposed the victory, nothing can thwart it! Faith takes risks.
Jonathan and his armor-bearer went toward the Philistine camp and decided that if one of them asked them to “come up” then that would be a sign from God that He was going to deliver them into their hands. They did and He did! They slaughtered twenty men before the rest became confused by God. Then the Israelites saw what was happening and came in and drove out the rest. Victory…because one man said “perhaps the Lord will act in our behalf” and acted on it.
The Lord has been acting on our behalf for the past five and a half years. He has been graciously answering yes to the prayers of many faithful family and friends. So we are going to step out in faith as Jonathan did with his words on our tongues and in our hearts…
”Perhaps the Lord will act in our behalf. If God has purposed the victory, nothing can thwart it!”
Faith takes risks.
February 27, 2017
My Doctor Called….
Last Friday, late afternoon, shortly before we headed out for an evening of good music and old friends, Dr. H called to check on me. It is one thing to have had one amazingly attentive doctor in my life, but to now be able to increase that count to two is truly a gift! She wanted to see how my endoscopy went. I giggled and told her it went great...I was asleep!! ☺ She had the results that basically showed that while I had evidence of gastritis (probably from all the pain meds I had been on for my knee surgery and dental procedure) that it was now inactive and I shouldn’t need treatment. So that was a relief. She asked how my symptoms were, and while they are much better, I am still having issues with nausea on a somewhat regular basis. So who knows…. But we have crossed one thing off the list.
Then she wanted to re-visit our last conversation about my cancer numbers. You know…the “we have GREAT NEWS” conversation. LOL! I told her that I had also spoken with Dr. Shah and that she had sort of spoken my language and gotten me on the same page, so I was good to go. I also told her how very thankful I am for my new team, their care and attentiveness, wonderful attitudes, thoughtfulness, and thoroughness…it all made me feel very safe and cared for. She understood the relationship I had with Dr. Shah, so it seemed to mean a great deal to her for me to embrace our new relationship.
Then she let me know that some other results had come back since we last spoke. The chimerism…donor percentage level. Shortly after my stem cell transplant, I had successfully reached 100% donor count, which is the goal. Out with the bad, in with the good. Little by little, some of my old bad guys who had been hiding around a nook or cranny and didn’t get killed all the way, started rearing their ugly heads and barging back in. My donor count went down to 95%. Still ok. The past year it has hovered between 89-92%. This count is now down to 82%. ☹
Now let’s go back to my other number that we follow. My lymphocyte count has grown from 2 to now 47% in a year. The window between growing lymphocytes and decreasing donor counts is becoming something to watch.
But I thought that last week she said that we weren’t going to concern ourselves with numbers anymore! Well, maybe that was a bit of an overstatement. Friday, she told me that she is ready to present my case to “the team” (the group of doctors in each department at MDA who discuss all their patients and make recommendations together on each case). There are basically two paths to take…two completely different paths.
The first option, one that we discussed with Dr. Shah before we did the CAR T-Cell trial back in 2015 is a Donor Lymphocyte Infusion (DLI). If you have followed me for a while, you may remember me writing about this in the past. This is like a mini-transplant booster. They re-harvest from my original donor (if he is still willing) and inject/infuse the lymphocytes (a sub-type of the white blood cell) into me with the goal of achieving Graft versus Tumor (GVT) effect. That’s where the donor lymphocytes, which are T-cells, attack and kill residual cancer cells. That’s the plan.
It can get me back into remission and back to full donor count. (A second full transplant is much more risky but not off the table down the road.)
The problem is Graft versus Host (GvHD) disease. That’s when the donated bone marrow or stem cells attack your own body cells. This happens because the donated cells (the graft) see your cells (the host) as foreign and attack them. Somewhere between 1-4 out of every 5 people will develop some degree of GVHD! The incidence of GvHD is very high with DLI’s. Mine was very mild after my transplant. Some in my gut and more with my skin. But we were able to get it under control. It can last for a few months. It can last a lifetime. I have a dear friend who died an extremely painful death due to GVHD. There are no guarantees on this one. It is no respecter of persons.
The second option will most likely be the new immunotherapy drug called Ibrutinib, or Imbruvica. It is touted to improve survival and symptoms. It does not achieve remission. It just helps you not die. Which is good! Folks could conceivably live on this drug “inevitably” while researchers continue to look for new and better alternatives. This did not even exist when I was diagnosed! And it supposedly works even on folks with 17p deletion. So that is a plus!
So this looks like a no brainer, right?! Go with the drug!! Well, there are side effects to it as well. Bleeding problems that could lead to death. Infections, decrease in blood cell counts, heart rhythm problems, high blood pressure, secondary cancers, tumor lysis syndrome (TLS) which can cause kidney failure and the need for dialysis, seizure, and even death. Most common side effects are diarrhea, muscle and bone pain, rash, nausea, bruising, tiredness, and fever. Wow. Been there, done that, have the t-shirt!
So, yeah, this was a fun post! I just wanted to lay it out there and let you know what we were looking at, what we are praying about, what we are researching the pros and cons of. Yesterday, a loved one told me that I’ll know…just keep following my gut. Well, our gut, our heart, our God has led us well so far. We’ll keep listening to that still small voice.
“I will instruct you and teach you in the way which you should go;
I will counsel you with My loving eye upon you.”
Psalm 32:8
“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 25:45
Then she wanted to re-visit our last conversation about my cancer numbers. You know…the “we have GREAT NEWS” conversation. LOL! I told her that I had also spoken with Dr. Shah and that she had sort of spoken my language and gotten me on the same page, so I was good to go. I also told her how very thankful I am for my new team, their care and attentiveness, wonderful attitudes, thoughtfulness, and thoroughness…it all made me feel very safe and cared for. She understood the relationship I had with Dr. Shah, so it seemed to mean a great deal to her for me to embrace our new relationship.
Then she let me know that some other results had come back since we last spoke. The chimerism…donor percentage level. Shortly after my stem cell transplant, I had successfully reached 100% donor count, which is the goal. Out with the bad, in with the good. Little by little, some of my old bad guys who had been hiding around a nook or cranny and didn’t get killed all the way, started rearing their ugly heads and barging back in. My donor count went down to 95%. Still ok. The past year it has hovered between 89-92%. This count is now down to 82%. ☹
Now let’s go back to my other number that we follow. My lymphocyte count has grown from 2 to now 47% in a year. The window between growing lymphocytes and decreasing donor counts is becoming something to watch.
But I thought that last week she said that we weren’t going to concern ourselves with numbers anymore! Well, maybe that was a bit of an overstatement. Friday, she told me that she is ready to present my case to “the team” (the group of doctors in each department at MDA who discuss all their patients and make recommendations together on each case). There are basically two paths to take…two completely different paths.
The first option, one that we discussed with Dr. Shah before we did the CAR T-Cell trial back in 2015 is a Donor Lymphocyte Infusion (DLI). If you have followed me for a while, you may remember me writing about this in the past. This is like a mini-transplant booster. They re-harvest from my original donor (if he is still willing) and inject/infuse the lymphocytes (a sub-type of the white blood cell) into me with the goal of achieving Graft versus Tumor (GVT) effect. That’s where the donor lymphocytes, which are T-cells, attack and kill residual cancer cells. That’s the plan.
It can get me back into remission and back to full donor count. (A second full transplant is much more risky but not off the table down the road.)
The problem is Graft versus Host (GvHD) disease. That’s when the donated bone marrow or stem cells attack your own body cells. This happens because the donated cells (the graft) see your cells (the host) as foreign and attack them. Somewhere between 1-4 out of every 5 people will develop some degree of GVHD! The incidence of GvHD is very high with DLI’s. Mine was very mild after my transplant. Some in my gut and more with my skin. But we were able to get it under control. It can last for a few months. It can last a lifetime. I have a dear friend who died an extremely painful death due to GVHD. There are no guarantees on this one. It is no respecter of persons.
The second option will most likely be the new immunotherapy drug called Ibrutinib, or Imbruvica. It is touted to improve survival and symptoms. It does not achieve remission. It just helps you not die. Which is good! Folks could conceivably live on this drug “inevitably” while researchers continue to look for new and better alternatives. This did not even exist when I was diagnosed! And it supposedly works even on folks with 17p deletion. So that is a plus!
So this looks like a no brainer, right?! Go with the drug!! Well, there are side effects to it as well. Bleeding problems that could lead to death. Infections, decrease in blood cell counts, heart rhythm problems, high blood pressure, secondary cancers, tumor lysis syndrome (TLS) which can cause kidney failure and the need for dialysis, seizure, and even death. Most common side effects are diarrhea, muscle and bone pain, rash, nausea, bruising, tiredness, and fever. Wow. Been there, done that, have the t-shirt!
So, yeah, this was a fun post! I just wanted to lay it out there and let you know what we were looking at, what we are praying about, what we are researching the pros and cons of. Yesterday, a loved one told me that I’ll know…just keep following my gut. Well, our gut, our heart, our God has led us well so far. We’ll keep listening to that still small voice.
“I will instruct you and teach you in the way which you should go;
I will counsel you with My loving eye upon you.”
Psalm 32:8
“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 25:45
February 5, 2017
The NEW CLL
This past Wednesday, I had my appointment for my regular labs, a CT, and to finally meet my new stem cell team. I haven’t had a CT since 2014. I had wondered why they didn’t do one during my last annual check-up in May, and I learned during this visit the reason why processes had been changing. I used to get a BMB (bone marrow biopsy) and a CT scan almost every time I turned around. Then they became fewer and fewer. I thought it was just because my numbers had been lower. But no. That wasn’t it. The entire protocol for CLL is changing. And it looks like I’m going to have to change the way I think, and feel, about the whole thing.
First of all, I want to thank all of you who have prayed for this transition to my new doctor team. The whole group seems wonderful. Nurse Kellie has been with Dr. H for fourteen years! That has to say something right there. And she’s been at MDA for twenty-four years! She was delightful and very efficient. My new PA (physician’s assistant), Katie, is a jewel. I was really dreading this change because I LOVE my Mary! It was hard enough losing Dr. Shah without having to lose Mary as well. But such is life. Katie has already proven to be incredibly helpful, perky (you know I like perky), responsive, and caring. Finally, Dr. H came in. She is very different from Dr. Shah…a bit quieter, but still communicative, friendly, knowledgeable, caring. She took her time with me, answered my questions, and educated me with regard to the new direction CLL protocol is headed. She even has a bit of a dry humor as she commented to me, “You’re not going to die! No one dies of CLL anymore!” I think she also wanted me to know that she has my back.
I have known, and mentioned on my blog, that two, now three, new targeted therapies have been discovered since I was diagnosed in 2011. Ibrutinib (Imbruvica) is a targeted drug that even works for folks like me who have hard to treat varieties like 17p deletion. Idelalisib (Zydelig) is another targeted drug. They both block a kinase protein. This drug helps treat CLL after other treatments have been tried. Venetoclax (Venclexta) is a drug that targets BCL-2, a protein in CLL that helps them survive longer than they should. It is especially used in patients with 17p deletion, typically after at least one other treatment has been tried.
Dr. H said that the new protocol is not as much numbers based as it is symptoms based (very enlarged lymph glands, enlarged spleen, low platelets, etc.). For months, we have been closely monitoring my flow cytometry results, watching those numbers double just about every two months. It’s been quite disconcerting to say the least. I have been able to tell, since I am quite in tune with my body, that my lymph glands are slightly enlarged. (Thus, the decision for the CT scan.) I have very little energy or stamina. And I spent quite some time dealing with ongoing nausea. So when should I be concerned?
Good question. Not right now. My WBC (white blood count) and platelets are still fine. In fact, she said that she has had patients with high blood counts (30-40+...high for CLL, not ALL) and still didn’t treat because they were still asymptomatic otherwise. Can you even begin to imagine how foreign this thinking is compared to where we’ve been?! My CT did show slightly enlarged lymph glands in my neck, especially on the left side, and a thickening of my chest wall…whatever that means. Plus, a hiatal hernia. Yippee! But the glands aren't as big as an egg sticking out of my neck, so I'm good! So, we are back to the ever favorite “Watch and Wait.” For those of you without cancer, I’m sure this sounds great! Perhaps for those of you WITH cancer, it might sound peachy as well. I AM thankful that mine is not growing as quickly as it seemed to be there for a while. What is difficult, or emotionally disconcerting at times, is the constant unknown. I am thankful for how this disease has taught us to be thankful for every day, every minute; to keep short accounts, to look for the beauty and the good, to laugh, to love, to cherish. I have learned a great deal from many who have gone before me and those who have walked with me. I am thankful for my God and for what He continues to teach me every day.
So, NEW CLL, here we come. We will still be armed and prepared because that’s what we do. We will watch and wait and not be dismayed because we have a God who calms our hearts and fears. I will continue to reach out to those around me at MDA because I was once that person. I guess He’s not finished with me yet.
“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 40:10
First of all, I want to thank all of you who have prayed for this transition to my new doctor team. The whole group seems wonderful. Nurse Kellie has been with Dr. H for fourteen years! That has to say something right there. And she’s been at MDA for twenty-four years! She was delightful and very efficient. My new PA (physician’s assistant), Katie, is a jewel. I was really dreading this change because I LOVE my Mary! It was hard enough losing Dr. Shah without having to lose Mary as well. But such is life. Katie has already proven to be incredibly helpful, perky (you know I like perky), responsive, and caring. Finally, Dr. H came in. She is very different from Dr. Shah…a bit quieter, but still communicative, friendly, knowledgeable, caring. She took her time with me, answered my questions, and educated me with regard to the new direction CLL protocol is headed. She even has a bit of a dry humor as she commented to me, “You’re not going to die! No one dies of CLL anymore!” I think she also wanted me to know that she has my back.
I have known, and mentioned on my blog, that two, now three, new targeted therapies have been discovered since I was diagnosed in 2011. Ibrutinib (Imbruvica) is a targeted drug that even works for folks like me who have hard to treat varieties like 17p deletion. Idelalisib (Zydelig) is another targeted drug. They both block a kinase protein. This drug helps treat CLL after other treatments have been tried. Venetoclax (Venclexta) is a drug that targets BCL-2, a protein in CLL that helps them survive longer than they should. It is especially used in patients with 17p deletion, typically after at least one other treatment has been tried.
Dr. H said that the new protocol is not as much numbers based as it is symptoms based (very enlarged lymph glands, enlarged spleen, low platelets, etc.). For months, we have been closely monitoring my flow cytometry results, watching those numbers double just about every two months. It’s been quite disconcerting to say the least. I have been able to tell, since I am quite in tune with my body, that my lymph glands are slightly enlarged. (Thus, the decision for the CT scan.) I have very little energy or stamina. And I spent quite some time dealing with ongoing nausea. So when should I be concerned?
Good question. Not right now. My WBC (white blood count) and platelets are still fine. In fact, she said that she has had patients with high blood counts (30-40+...high for CLL, not ALL) and still didn’t treat because they were still asymptomatic otherwise. Can you even begin to imagine how foreign this thinking is compared to where we’ve been?! My CT did show slightly enlarged lymph glands in my neck, especially on the left side, and a thickening of my chest wall…whatever that means. Plus, a hiatal hernia. Yippee! But the glands aren't as big as an egg sticking out of my neck, so I'm good! So, we are back to the ever favorite “Watch and Wait.” For those of you without cancer, I’m sure this sounds great! Perhaps for those of you WITH cancer, it might sound peachy as well. I AM thankful that mine is not growing as quickly as it seemed to be there for a while. What is difficult, or emotionally disconcerting at times, is the constant unknown. I am thankful for how this disease has taught us to be thankful for every day, every minute; to keep short accounts, to look for the beauty and the good, to laugh, to love, to cherish. I have learned a great deal from many who have gone before me and those who have walked with me. I am thankful for my God and for what He continues to teach me every day.
So, NEW CLL, here we come. We will still be armed and prepared because that’s what we do. We will watch and wait and not be dismayed because we have a God who calms our hearts and fears. I will continue to reach out to those around me at MDA because I was once that person. I guess He’s not finished with me yet.
“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 40:10
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