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





August 2, 2016

My Most Watched Movies

The other day, Facebook had a 44 favorite’s list. I took on an impossible task of listing my “favorite” movie, so I just picked on. It’s been bugging me ever since. I love SO many movies that I thought I’d make a list of movies that I have watched at least a dozen times or more. Movies that I never get tired of. Movies that I could quote many of their lines. Many that my kids grew up on. A few that are newer. Musicals, comedies, dramas, westerns…. How do you ever pick just one? So in no particular order, here we go!

1. The Sand Lot – I have seen this with my kids at least a hundred times! I LOVE this movie. If you have young ones and haven’t seen it yet, get it! Classic! (Of course, when we first took the kids to the theater to see it, they put in the WRONG movie, and some gory shoot ‘em up started and every parent and child started running and screaming out of the theater! Good times!)
2. The Princess Bride – Same story. We have loved and quoted this movie for as long as I can remember. Josh bought me the book that Cary Elwes wrote on the making of the movie. I soaked up every word!
3. Pretty Woman – While you’d think the story line might be a bit tawdry, it is still the basic redeeming love type story. This is one for the ages. I watch it almost every time I see it scroll by. “Big mistake. Big. Huge!” We ALL use that line!!
4. First Knight – It’s a good thing that I like King Arthur stuff since my son writes about it!! ☺ But I have always loved this movie…for many of the same reasons. It’s has it all…friendship, love, honor, combat, relationship woes, love of country, honor, devotion, tension, beauty, sensuality, duty, sadness, resolution.
5. The Sword and the Stone – the animated version ☺
6. The Jerk – This is probably my and my kids all time favorite comedy. Another frequently quoted movie. “Now I AM somebody!” “He hates those cans!” I could go on, but “this is all I need…this and the dog.”
7. Father of the Bride – This one won’t really hit you until your little girl becomes a teenager and is actually getting relatively, realistically close to this reality. You must hire Martin Short for your wedding planner! Hysterical! I cried the entire time!
8. Murphy’s Romance – I have loved this movie since the first time I saw it. Sally Field and James Garner. She was a girl determined to make it on her own after having been married to a down and outer. James was older, wiser, and became her friend, confident, and eventually her forever after.
9. The Sound of Music – From the time I was a little girl and was mesmerized by this in the theater in the ‘60’s, this timeless musical has become a personal and a family favorite.
10. Gone with the Wind – I read the book before I saw the movie during my freshman year at Texas A&M. I was transported! Any time that I am sick for a while and have to stay put, or if we have a long bout of bad weather, I pull out my cherished set, curl up, and go back in time. “After all, tomorrow is another day!”
11. The Cowboys – Probably one of my favorite John Wayne movies. But running a tight race with…
12. The Quiet Man – Totally a different type of John Wayne movie, but I love it. I love Maureen O’Hara. She’s spunky. And they work it out.
13. Tombstone – I love the history, the story, the acting, the camaraderie. I loved Val Kilmer as Doc Holliday and Kurt Russell as Wyatt Earp. Then of course, there’s Sam Elliott! The cast was just superb. I could watch it over and over. And I have.
14. The Wizard of Oz – I could follow the yellow brick road and these lovable characters along with Dorothy on their adventure to Oz any day of the week. So happy that she always realizes that there’s “no place like home!”
15. It’s a Wonderful Life – Christmas isn’t Christmas without George Bailey and realizing what’s really important.
16. Miracle on 34th Street (old and new) – Kris Kringle can make just about anybody believe!
17. A Christmas Carol – Whether it’s George C. Scott, Alistair Finney, or the Muppets, I love this story. We have even found much older versions, some musical, some not. Another, simply titled, Scrooge, is a worthy watch. The Christmas season is full of this movie telling the story of how one can be changed by the power of love…and maybe a little bit of the fear of hell!
18. The Santa Clause – They did an awesome job with these movies! They’re fun. They’re today. They still make a point. And I like Tim Allen.
19. White Christmas – Bing Crosby, Danny Kaye, Rosemary Clooney….Dancing, singing, pretty ladies, love, soldiers, snow, mix-ups, make-ups, happy ending!
20. Renaissance Man – Yes, Danny DeVito. If you haven’t seen this, it is a classic! He took a group of misfit recruits who didn’t care and turned them into disciplined soldiers through the power of classic literature.
21. Dead Poets Society – and almost everything else Robin did. Another movie where the teacher motivates his students to think outside the literary box. “Captain, our Captain.”
22. Rocky…all except #5 - I am a HUGE Rocky fan. Must I explain?
23. Rob Roy - with Liam Neeson. He has been called the “Scottish Robin Hood.” The love that he and his wife share is rare and beautiful. This is a difficult movie to watch, but I find myself coming back to it over and over.
24. Forrest Gump – Who does not love Forrest Gump? It’s like our entire history along with a love story mixed with “it can never be” story all wrapped into one. (I love ALL things Tom Hanks! This is a whole other category)
25. Sleepless in Seattle – best chick flick ever that guys will watch.
26. You’ve Got Mail – second best
27. BIG – this was just pure genius
28. When Harry Met Sally – “I’ll have what’s she’s having!” Any questions?!?!
29. Saving Private Ryan – very real.
30. A League of Their Own – this is another movie that we watched dozens and dozens of times and never grew tired of it. I could pop it in today and smile a heart full of smiles all over again. Timeless.
31. All the animated movies like…Beauty and the Beast, Little Mermaid, Finding Nemo, Lady and the Tramp, Cars, Toy Story, plus the classics I grew up with and I’m sure there are many more that I just can’t think of right now.


There are many other movies that I really enjoy, but they haven’t made the dozen + mark yet. I like The Princess Diaries; Ms. Congeniality; You, Me, and Dupree; The Blind Side; Braveheart; The Patriot; What Women Want; Taken; Mrs. Doubtfire; Homeward Bound; Cast Away; The Green Mile; The Money Pit; My Big Fat Greek Wedding; Mama Mia; Eight Below; and more than I can continue to count. Here’s to the movies!




July 21, 2016

Camelot Fallen…A Novel in Review

“You’re wrong, Mordred,” the king bellowed, the tip of his shining sword resting against his enemy’s throat, “You’ve always been wrong. Honor, forgiveness, and compassion are not signs of failure or weakness; rather, such acts of love should be the standards against which true strength is measured. Selfishness is easy. Hatred is easy. But mercy? Hope? A man sacrificing his pride or even his life on behalf of another? There is nothing more powerful in this world or the next.”


It’s not often that a written work contains so many elements of humanity coupled with other worldly spirituality. This story encompasses every emotion, taking the reader through in-depth character development, the joy and struggles of relationship, the growth and bond of friendship, the love of king and country, the battle between good and evil, between friend and foe, the seen and the unseen, and within oneself. The imagery and allegories woven into the fabric of the story often left me breathless or brought me to tears.

Camelot Fallen has taken the story of King Arthur, his knights, and his queen and rendered a far more complete telling, while incorporating the elements of forgiveness and redemption. I was moved beyond words. Now, back to page one!


Available on Amazon.com