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




December 12, 2016

Fragile Peace

This month at church, our pastor has been taking us through Isaiah in preparation for Christmas. It is always amazing to think back to how Christ’s birth was prophesied so many hundreds of years earlier.

“For unto us a child is born, unto us a son is given, and the government will be on his shoulders. And he will be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace. Of the increase of his government and peace there will be no end. He will reign on David’s throne and over his kingdom, establishing and upholding it with justice and righteousness from that time on and forever. The zeal of the Lord Almighty will accomplish this.”
Isaiah 9:6-7


Yesterday we continued a little further into the book and considered another side of this story. Dean mentioned that he had a friend that didn’t like Christmas music because it lacked internal conflict. It was always basically “holly jolly.” Then he reminded us of the reality of the circumstances surrounding the Christmas story. A teenage mom, a hesitant husband who at first was ready to divorce his bride because of the embarrassing situation, and a young family who would soon be escaping to Egypt as refugees. Doesn’t sound so holly jolly when you put it that way, does it?!

During this time of year, many of us are moved by the remembrance of Christ’s birth, the joy of family, the opportunity of giving, the wonderful smells of holiday baking, and the sounds of laughter and music filling the air. But there are many, probably more than any of us can imagine, who struggle with at least some aspect of pain during the Christmas season. There are broken relationships, families who struggle with the mere thought of getting together, people who have no family at all, those who have lost loved ones and want to avoid the holidays altogether. There are those who are struggling financially and cannot afford to buy their loved ones the gift their hearts want to give. There are many who live far away from their loved ones. There are those who are ill and biggest wish would just be for strength and healing…and to see another year. There are those who are searching for the true meaning not only of Christmas but of life itself. As Dean shared, we are vulnerable. Our peace…fragile.

There are so many hurts. We dress it up with tinsel and lights and the hope that there will be “peace on earth, good will toward men.” How do we help? What do we do?

“Let the peace of Christ rule in your hearts, since as members of one body
you were called to peace. And be thankful.”
Colossians 3:15

“But the fruit of the Spirit is love, joy, peace, forbearance, kindness,
goodness, faithfulness.”
Galatians 5:22

“Make every effort to live in peace with everyone and to be holy;
without holiness no one will see the Lord.”
Hebrews 12:14

“Let us therefore make every effort to do what leads to peace
and to mutual edification.”
Romans 14:19

“Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts
and your minds in Christ Jesus.”
Philippians 4:6-7

“When Jesus spoke again to the people, he said, "I am the light of the world. Whoever follows me will never walk in darkness,
but will have the light of life."
John 8:12


He has given us His Word and His Spirit. May we look within and to those close to us to see how fragile our peace might be this season. Let us invite this Christ Child to mend hearts, restore relationships, renew minds, heal bodies, and give the peace that only He can give.

“Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.”
John 14:27


Give Jesus.






December 2, 2016

The Climb Continues

Yesterday, my PA from MDA called to let me know she had gotten the results back from my flow cytometry test. For those who have managed to hang with me during this journey and actually remember what all these various tests are, the flow cytometry test is the blood version of my bone marrow biopsy (BMB). Much less invasive! At one point, the two tests were delivering very similar results, so they decided to spare my backside the pain and suffering of the frequent BMB’s and rely more on the blood draws.

Over the last year plus, my flow cytometry has shown that my CLL has grown from 2-3% to 6% to 12.5% to 18% with some questionable aspects that could only be measured by a BMB. That particular bone marrow test counted it back at 12%, but with the 17p deletion. We were very confused but grateful that my white blood count was holding.

Yesterday, my results came back from this month’s blood test, and it has now jumped from 18% to 27%! That’s a scary number. When this all started, my doctor said that as long as it stayed under 10% we didn’t need to worry. Well, we passed 10% a long time ago! Now the focus seems to be on my white blood count and platelets. As long as they hold, we can hold off on treatment. But to watch my CLL percentage jump exponentially with every draw is a bit disconcerting.

So, this is just to update and ask that you continue to pray with us. I am still working diligently to recover from my knee surgery, and we are little by little trying to enjoy a few things on our bucket list. God alone knows the number of our days. But we plan to live and love to His glory for as long as possible.


“Every valley shall be lifted up, and every mountain and hill be made low;
the uneven ground shall become level, and the rough places a plain.”
Isaiah 40:4

“And I will lead the blind in a way that they do not know, in paths that they have not known I will guide them. I will turn the darkness before them into light,
the rough places into level ground. These are the things I do,
and I do not forsake them.”
Isaiah 42:16



October 24, 2016

Answers

This has been quite a month. At my last appointment with Dr. Shah, we were told about her suspicions about a genetic mutation called “translocation” that showed indications on my March BMB (bone marrow biopsy). So they did another one this past month. During the waiting game, besides having a total knee replacement which was just loads of fun, we did quite a bit of research on translocation. I had way too much time on my hands! If anyone were curious, regarding my situation, it would be like 17p switch instead of 17p deletion. And it did not look good!

Because of the pain from my surgery, time was not flying by, and what I thought had been three weeks had only been two! I kept emailing my PA checking to see if my BMB results had come back. Finally, on a Friday, I saw on my MDAnderson webpage that there were results back. I knew that I’d be getting a call on Monday. I did. I usually follow Dr. Shah without any problem, but this time it was all so confusing. I tried to convey the message to Paul when he got home, but we both still had questions. So the next day, I sent an email asking for some clarification. They were very sweet as always and understood how it had gotten a bit puzzling.

The long and short of it is that the March BMB had indicated a possibility of translocation. The October BMB clearly showed 17p deletion (not the switch which would have indicated translocation.) So the point of this is that they needed to definitively determine that the CLL was back and then “type” it. I have been in what was referred to as “Minimal Residual Disease” (MRD) for the past couple years. I was in remission for two years after the stem cell transplant, then MRD for the next couple years. Now it’s moved forward to the level that it can be “typed.”

The fact that the 17p deletion has returned is not good, but it’s not as much of a death sentence as it was the first time. 17p deletion typically makes CLL not respond to treatment. That was the main reason for my stem cell transplant (that and I had all the other negative markers as well). Since the time of my original diagnosis, researchers have developed a couple new targeted agents that have shown incredible promise. They have actually replaced one of the old tried and true medications. So when the time comes, Ibrutinib will probably be my first go-to choice. And if all else fails, a second stem cell transplant is always an option. I don’t intend to go down without a fight!

But we’re still a ways from that. My WBC and platelets are still holding. They could look good for months, years, or days. My doctors will continue to monitor those numbers now that they have the typing determined. That is why we will continue with the same mantra…One Step, One Day, One Prayer at a time.


“Therefore the LORD longs to be gracious to you, And therefore He waits on high to have compassion on you for the LORD is a God of justice;
How blessed are all those who long for Him.”
Isaiah 30:18


“But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties.
For when I am weak, then I am strong.”
2 Corinthians 12:9-10


“The LORD is my strength and my song, and he has become my salvation; this is my God, and I will praise him, my father’s God, and I will exalt him.”
Exodus 15:2




September 26, 2016

“The Terrible, Horrible, No Good, Very Bad Day”

Do you remember the notable children’s book from the ‘70’s, “Alexander and the Terrible, Horrible, No Good, Very Bad Day?” Well, we just had one!

It started out like many bad days have for many other folks…our travel plans went awry. But the fact that we even HAD travel plans was so incredibly exciting that I chalked it up to experience and the interesting end to a wonderful four days!

But then it continued. I had doctor appointments first with my mom, then on to MD Anderson for mine. It was supposed to just be my labs and a visit with Dr. Shah. I wouldn’t be getting any results until at least a week or two. We discussed the current issues I’ve been having, and since we’ve been together for this long, we both knew just what I needed and what probably caused most of it.

Then she leaned in with “that look.” I know “that look” because we’ve been through a lot! She said that she had additional results from the last set of labs that she hadn’t had an opportunity to share with me. They were about my DNA. Well, I just figured that my donor percentage had dropped again. Been there, done that. But she still had “that look.” She went on to talk about “translocation” and other words, some that I knew, some that I didn’t. But the one that I had no problem identifying and that caused “that look” was 17p deletion. :( It looks like it might be coming back.

Since she’s been monitoring me primarily by peripheral blood draws instead of the frequent bone marrow biopsies, she wants to do the BMB this Thursday to further investigate and study the findings in the blood. Please pray that 1) it’s not there! or 2) that it is minimal. For those who remember my issue with 17p deletion the first go round, it was the main negative marker that made it necessary for me to have the stem cell transplant. Since then, new advances have been made in CLL research, even with 17p deletion, that could allow me to be treated with other options.

With having been awake for 29 hours at that point, I was not a pillar of emotional strength, and I got a bit teary. Then the conversation turned to my upcoming knee surgery and I was teasing how I refer to her as my primary care physician (PCP). She suddenly had this really weird look and exchanged glances with my PA. I felt like I had completely said the wrong thing! Then she shared with me that she and her family were relocating to California. Her husband had been offered a great position and she was taking a new direction as well. While I wanted to be excited for their opportunity, I just lost it. She has been part of my life team for the past five years! She is family! I could tell that it was as hard for her to tell me as it was for me to hear. How many doctors offer to give you their personal contact info? Please pray for whomever she chooses to be my new doctor. There will be amazing, fast paced shoes to fill! We have her until the end of the year….

As for us, please pray for our hearts. We’ve been here before. It was scary the first time when we had no clue. It’s scarier now when we do. But God continues to walk beside us, pick us up when we’re tired, carry us when we’re weak, remind us of His love, care, and peace. Our desire, our prayer is for time. He has graciously given it so far. We humbly ask again.



Then there was the baggage.




August 8, 2016

Just Wait!

I spoke to Mary, my PA, this morning. Dr. Shah and Dr. Weirda conferred and decided that since my other counts are still holding strong, they would continue to “watch and wait” until my next set of labs at the end of September. :/

I looked back over past blog posts to other times of “waiting!” It seems to be one of the more frustrating aspects of this journey. It’s like sitting at a traffic light that takes forever to change from red to green. Not that I am eager to rush into whatever treatment program might be next, but the on-going lack of clarity and perhaps fear of the unknown weighs heavy.

It does seem wise, and Mary agreed, that I go ahead and get my knee surgeries done while my counts are still good. I am hoping that my orthopedist will do them both at the same time and allow me to just go through the hard work of rehab and recuperation all at once. If we spread them out too far, I may not be fortunate enough to have strong counts when he’s ready to do the second one. So let’s get to it while the gettin’s good!

In the meanwhile, I am going to the gym three times a week to do water exercise and ride the recumbent bike. I am getting better on the bike every day. I still have a difficult time walking and my knees hurt and swell with overuse, or hardly any use at all. But I imagine that there are quite a few of you who have similar issues. So we press on.

It is discouraging to think that my CLL has tripled over the last six months, but in the big scheme of things it is still small compared to what it could be and to what it was before. I am thankful that the negative markers have not reappeared so far. That’s huge! So it is important that I keep my focus on the positives. And I am positive of one thing. God has got this. Always has. Always will.


“I believe that I shall look upon the goodness of the LORD in the land of
the living! Wait for the LORD; be strong, and let your heart take courage;
wait for the LORD!”
Psalms 27:13-14

“but they who wait for the LORD shall renew their strength;
they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.”
Isaiah 40:31

“The LORD is good to those who wait for Him, to the soul who seeks Him.”
Lamentations 3:25

“Rejoice in hope, be patient in tribulation, be constant in prayer.”
Romans 12:12

“I waited patiently for the Lord; and He inclined unto me, and heard my cry.
He brought me up also out of an horrible pit, out of the miry clay, and set
my feet upon a rock, and established my goings. And He hath put a new song
in my mouth, even praise unto our God: many shall see it, and fear,
and shall trust in the Lord.”
Psalm 40:1-3

“But as for me, I will look to the Lord; I will wait for the God of my salvation;
my God will hear me.”
Micah 7:7

“For God alone, O my soul, wait in silence, for my hope is from Him.”
Psalm 62:5






August 4, 2016

Results…12.5%

12.5%. Not the number we were hoping for. Over the last six months, my MRD (minimal residual disease) percentage has grown from 2-3% to 6% and now to 12.5%. The goal was to keep it under 10%. I guess “goal” is not quite the right word for something we cannot control.

I got the information a little differently this time. Instead of my typical call from my doctor or PA, I saw that my results had posted to my MD Anderson webpage, so I checked them myself. After this amount of time, I can read my own flow cytometry results. I was alone. Well, not completely. God was with me.

I emailed Mary, my PA, and told her that I had seen my results ☹ and asked if she or Dr. Shah could call me when they had a minute. She emailed me back within seconds so sad that I had seen them online before they had gotten to call me. Dr. Shah is out of town this week, and Mary had sent her my results and was waiting for a response from her on how to proceed. These ladies are like family to me! They are so caring, so loving…so much more than just my doctors. So I am waiting to hear whether we will continue to monitor, or get with Dr. Weirda, my leukemia doctor, and start on a program.

When I met with him back in May, he told me that when the time came there were several new advances in CLL treatments that hadn’t been available back when I was diagnosed. Of course, most of those wouldn’t have applied in my situation because of the multiple negative markers, but they can apply now. He was very reassuring.

I have talked to my sweetheart, my kids, and a couple of close friends. I was going to wait until Dr. Shah called with a plan before posting, but I decided that prayer could go ahead and get started! So, my dear friends, I am asking you to join me in prayer once again. My heart is a little heavy right now, but give me a day or two and I will again be strengthened in spirit by the prayers of the saints. The Lord has been so good to me and has given me such peace throughout this entire journey. But there are hard days. This is one of them.


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

“When anxiety was great within me, your consolation brought me joy.”
Psalm 94:19

‘When I am afraid, I put my trust in you.”

Psalm 56:3