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





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



July 11, 2016

Taking It As It Comes

Today was an emotional day at MDA. I didn’t receive any bad news or have to make any life altering decisions. It was just raw. Reminders of my reality.

I had labs and a follow-up to check on my thyroid numbers since I’ve switched to the Armour Thyroid. Everything looks great, and I am not having any apparent side effects. Of course, I still have some of my old side effects such as my knee issues, one of which was operated on last week, so I can’t say that switching thyroid meds made that any better. :/ I am pretty convinced at this point that my T-Cells did a number on my joints, which perhaps already had a hereditary inclination toward deterioration. (For those who haven’t heard that report, the orthopedist is pessimistic about my knees and thinks I will end up with a double replacement. Oh, well. Maybe new ones will work better!)

The PA visited with me quite a while before my internist came in. This is one of my favorite teams. Very caring. While the PA updated all my info for the new computer system and asked all the pertinent questions, she could tell that there were a few things heavy on my mind. One was my weight. Before cancer, and for the thirty years before that, I had basically weighed the same amount, sometimes even less due to stress or whatever it was. After the stem cell transplant, I lost down even more. Then the transplant drop-kicked me into speed-menopause. My hormones were completely off. When I finally started getting stronger after the transplant, I started gaining…and gaining. Some was good. I needed it. Then they removed my parathyroid because of a lack of calcium absorption, which then made me hypothyroid and they started me on Synthroid. A month later came the CAR T-Cell Trial and my joints started going south, and the weight kept coming.

Every time I’d go to the doctor, I would ask them about the weight gain and they would just say, “You look great!” or “You are getting older, you know.” :/ And I would answer, “I’m only a year older than I was last year!” Or “I liked the way I looked fifteen pounds ago!” Or “Well, you’re not the one having to buy new clothes!” Still no answers. They just said to embrace the new weight. So that’s what I’ve been trying to do.

But I asked again today thinking it might have something to do with the thyroid thing, but I got the same answers. And, of course, with my knees being out of sorts for over a year now, I have not gotten the kind of exercise I used to. So maybe if I end up with new knees, I’ll end up with my old waist! Or maybe not. My wardrobe style has changed. I am getting more comfortable with my new shape. Not comfortable in that I don’t want to work on it, but comfortable in that it’s not what makes me who I am. And my sweetheart still thinks I’m beautiful. I sure do love him!

The other thing that my PA mentioned was how good I look compared to other stem cell patients. Thankful. And good timing! We talked about what might make that so. The grace of God was the first thing that came to mind. The second thing was simply doing what the doctors said and having an amazing caregiver to make sure I did! We talked about the various other patients she sees and how many started out unhealthy to begin with, young or old. I started out healthy…non-smoker, no drugs, not a big drinker, healthy eater, healthy weight. I had a lot going for me at the start. Supposedly that can help.

Next, I did absolutely everything the doctors asked me to do! If they said drink water, I drank a LOT! If they said rinse your mouth with some special stuff, I did it a dozen times a day. If they said not to be around sick people or any young children, then I might cry and fuss and try to find a way around that one, but I stayed away from my grandchildren for as long as I had to…so I could be with them now and tomorrow and hopefully many more tomorrows. I would wear my mask and my gloves and wash my hands after going to the store or anywhere. I would avoid gardening, which I loved! And if I cheated now and then, I would go wash right away. And I ate what I was supposed to eat, and didn’t eat what I wasn’t supposed to eat. And I lived.

And every time we turn around, there seems to be something else. You have leukemia. It’s the good kind. Oops, no. The bad kind. You’re a good candidate for a transplant. You’re in remission. It’s back. It’s MRD. What is that rash?!! Your stomach is a mess; you can’t take NSAIDs. You have osteoporosis. You can’t absorb calcium; we need to take out your parathyroid. You are hypothyroid. Here’s a new med for that. Let’s try a trial! Nope, the cancer is still there! We don’t know what’s wrong with your knees; let’s try this, and this, and this…. Oh, wow! You need surgery! You may need new knees. Your numbers are up again. But no matter what happens, no matter what the news, God has allowed us take this all in stride, give us His peace to take it a day at a time. Because that’s all any of us have…one day at a time. The one phrase that was probably the hardest to accept, even though they’ve told me this many times before, is that I will never be the same. A transplant patient, while so thankful for this life, is never quite as strong, as resilient, as enduring, as we once were. I think back just a few years ago to what I was able to do…at fifty! Five years of cancer, and all that has gone with it, has left me tired. Thankful, grateful, joyful, peaceful, but tired.

I will continue to take it as it comes. They will be checking my numbers again at the end of July. I’m praying that they’ll hold steady. Maybe we’ll get me some new knees, and then perhaps someday I’ll beat the odds and be the transplant patient that comes back stronger. We’ll see then if I care how much I weigh.


“For momentary, light affliction is producing for us an eternal weight of glory
far beyond all comparison.”
2 Corinthians 4:17





June 27, 2016

Through It All

Facebook has a wonderful and sometimes painful way of reminding us of things that “happened on this day” in years past. I would have never imagined the changes from year to year. I guess that’s why my phrase “one day, one step, one prayer at a time” has held so strong.

Today, I was having a conversation with an old friend that took me back through some tough memories. God has brought me through a lot in my life. I am thankful that He is always with me; He is forever my Father. He loves me, guides me, and has chosen me. I know as a parent that sometimes we are saddened by the choices of our children, and I know that over the years I have grieved the heart of my Father. But as a parent, I also know the unconditional love I have for my children, and that pales in comparison to the love that God has for me. Just as I continue to pray every day for my children and grandchildren, Christ through the Spirit continues to lift us up to His Father and “intercedes for us with groanings too deep for words.” Rom. 8:26

As I was thinking on these things, an old hymn came to my mind and heart and I wanted to write it down. Nothing seems to compare with the words of the old hymns….


THROUGH IT ALL

I've had many tears and sorrows,
I've had questions for tomorrow,
There've been times I didn't know right from wrong:
But in every situation God gave blessed consolation
That my trials come to only make me strong.

Through it all, through it all,
I've learned to trust in Jesus,
I've learned to trust in God;
Through it all, through it all,
I've learned to depend upon His Word.

I've been to lots of places,
And I've seen a lot of faces,
There've been times I felt so all alone;
But in my lonely hours,
Yes, those precious lonely hours,
Jesus let me know that I was His own.

Through it all, through it all,
I've learned to trust in Jesus,
I've learned to trust in God;
Through it all, through it all,
I've learned to depend upon His Word.

I thank God for the mountains,
And I thank Him for the valleys,
I thank Him for the storms
He brought me through;
For if I'd never had a problem
I wouldn't know that He could solve them,
I'd never know what faith in God could do.

Through it all, through it all,
I've learned to trust in Jesus,
I've learned to trust in God;
Through it all, through it all,
I've learned to depend upon His Word.


And it’s just as simple as that.





May 18, 2016

6.4%

That’s a very small number! Until you compare it to 1.8 or 3.2. Until you’re talking about the “C” word! ☹ Then it can keep you up at night.

Mary, my PA, emailed me with my CLL peripheral blood results and said that my numbers were “up” this month but that Dr. Shah (stem cell dr.) and Dr. Weirda (leukemia dr.) had discussed it and agreed to not pursue anything at this point and would rerun the test in three months. Try not to worry. Right. Well, I immediately emailed back to ask what exactly “up” meant? They have always kept us in the loop with all my numbers, and we are pretty meticulous about keeping track. For the past year that my CLL has been in “minimal residual disease” (MRD) status, my numbers have ranged between 1.8 and 3.2%... a very small percentage. We all liked it that way! It was the next best thing to remission. So to hear that it has jumped to 6.4%...doubled...is a bit troubling.

Over the last few weeks, my Facebook memories have been filled with blog posts that I wrote in May of 2012 when I had my transplant. Such a flood of emotions! I’m so thankful for the time I’ve had with my sweetheart, our kids, grandkids, family, friends. This past year has been a fight for my knees and for finding answers for the pain. The cancer has really been on the back burner. It may still be, but tonight it’s not. Probably won’t be until the next time they check it. Maybe it was a fluke. Maybe it’ll go back down. Maybe it won’t.

If it doesn’t, we’re in a better place than we were almost five years ago when all this started. Dr. Weirda told me earlier this month that there are several new treatments available now that make my options much more open when the time comes. And no matter what happens with percentages, blood tests, bone marrow biopsies, and all the rest, I know Who holds my tomorrows!

One thing that this crazy cancer has done for me is learn to appreciate every moment, live and love every day like it’s my last, don’t sweat the small stuff, it’s all small stuff. ☺

So, if I could ask for your prayers, again, I would certainly appreciate a prayer that my small stuff would stay small! 6.4% is big enough! Once I get to 10%, we have to talk options. And for all who know me, as much as I like to talk, I’d rather talk about something other than this.


“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

“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.
And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”
Philippians 4:6-7

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

“An anxious heart weighs a man down, but a kind word cheers him up.”
Proverbs 12:25

“Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go.”
Joshua 1:9

“Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”
Matthew 6:34

“When I am afraid, I put my trust in you.”
Psalm 56:3


April 14, 2016

On a Wing and a Prayer!

Well, this is our last ditch effort other than living on pain killers. A couple weeks ago, Dr. Shah even ordered labs to rule out Lyme disease! The lady is thorough…and for that we are very thankful.

We have been trying to come up with an answer for my joint pain for over a year now. At first, we thought it was due to the fighter T-Cells from my trial and it would settle down after a few months. Well, that didn’t happen. Tests, drugs, shots, all came up short. Then I read an article that mom found in the newspaper about a lady who had been on Levothyroxine (Synthroid) for years and had developed severe joint pain, insomnia, fatigue, and weight gain. Ding-ding-ding-ding!!!! Those are all of MY symptoms, and I went on Levothyroxine just before my trial. They removed my parathyroid a couple months before my CAR T-Cell trial, before my immune system plummeted again. And I started on the drug shortly thereafter. I have spent the last year blaming my pain on something related to the trial (chemo, T-cells, etc) and never thought to back up a month or so! :/

This lady’s doctor had switched her to the bioidentical hormone, Armour Thyroid. (There are a couple different brands but they all come from the same source.) Within SIX WEEKS her side effects were gone! Her question was why more doctors do not recommend the natural alternative? Good question.

So armed with this information, we did further research and found additional support to the claims of challenges with the synthetic option and benefits from the natural one. While everyone is different and many people have no issues with the synthetic version, many do…including my aunt and my daughter.

Confident that we had found the answer, I went to my follow up appointment at MDAnderson ready to ask, even battle, for a change in my medication. Well, that was not as simple as it might seem. My follow up was with my pain doctor, and he could not change my thyroid prescription. He was not particularly adverse to the idea, but he said I’d have to contact my endocrinologist. So I got online and emailed my appropriate doctor, told him the whole story (I’ve actually seen him during this process), and asked for his help. A few days later, I got a call from his nurse saying that the doctor really did not “recommend” the natural version of the thyroid treatment. And did I know it came from PIG?! I assured her that I did know the source and that I wasn’t requesting permission or recommendation. We had already done our research. No one in MDAnderson had been able to do anything at all to help or remedy my pain other than possibly put me on opioids indefinitely. This was possibly something that could ELIMINATE the pain. And I want to try. I have taken poisonous chemos in the attempt to save my life. What would it hurt to try a natural alternative to try to take away my pain? She said she would call me back.

Several days later, just when I was about to give up, I got a call back from the nurse. HE SAID YES! And this morning I started my first dose. Please pray with us that this, in time, will have a positive effect on my joints. If it helps with the insomnia, fatigue, and weight gain, well that will just be a bonus!!

What a simple blessing to walk with strength again.


“But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary;
they shall walk, and not faint.”

Isaiah 40:31



April 1, 2016

Childhood Cancer is No Joke

This past Monday, a precious four-year-old named Grant lost his battle with a stage IV cancer called neuroblastoma. His variety was extremely rare. He fought valiantly for two long years until a fungal pneumonia, along with other complications, overcame his weakened body. The doctors, his parents, Michael and June, and Grant himself fought until the bitter end. He was brave. He had faith. He is now with his Lord. His family, his community, all those who have prayed are broken hearted by the loss of this spirited little super hero. But all are thankful that we know Whom we have believed and that one day will be reunited.

“Each year, the parents of approximately 15,700 kids will hear the words ‘your child has cancer.’ Across all ages, ethnic groups and socio-economics, this disease remains the number one cause of death by disease in children. Despite major advances – from an overall survival rate of 10 percent just fifty years ago to nearly 90 percent today, for many rare cancers, the survival rate is much lower. Furthermore, the number of diagnosed cases annually has not declined in nearly 20 years.

• Every day, 43 children are diagnosed with cancer.
• 12% of children diagnosed with cancer do not survive.
• Children’s cancer affects all ethnic, gender and socio-economic groups.
• The average age of children diagnosed is six.
• More than 40,000 children undergo treatment for cancer each year.
• 60% of children who survive cancer suffer late-effects, such as infertility, heart failure and secondary cancers.
• There are approximately 375,000 adult survivors of children’s cancer in the United States.
That equates to 1 in 530 adults ages 20-39.”
[CureSearch for Children’s Cancer]

“Many childhood cancers have much higher survival rates when they are diagnosed in the early stages of the disease. Unfortunately, childhood cancers are sometimes overlooked or misdiagnosed because early symptoms are mistakenly attributed to more common injuries or illnesses. It is recommended that children have regular medical check-ups, and that parents pay close attention to the development of unusual signs or chronic symptoms, such as:

Persistent fever, nausea, or illness, often accompanied by vomiting
Tendency to bruise easily
Unusual lump or swelling (particularly around the neck, abdomen, chest, pelvis, or armpits)
Loss of energy and pale complexion
Headaches, often with early morning vomiting
Lingering pain in one area of the body
Abrupt vision changes
A whitish color behind the pupil
Sudden weight loss
Limping

Genetics may predispose some children to developing a specific type of cancer—if you are concerned that your family history puts your child at a heightened risk, discuss your worries with your child’s pediatrician. He or she may recommend imaging tests (i.e. MRI, x-ray), additional screening tests, and/or a biopsy if your child presents with an abnormal lump or tumor. The biopsy will involve removing some or all of the cells within the tumor for closer examination under a microscope.”
[American Childhood Cancer Organization]

“Childhood cancers are mostly those of the white blood cells (leukemia’s), brain, bone, the lymphatic system and tumors of the muscles, kidneys and nervous system. Each of these behaves differently. Cancers in very young children are highly aggressive and behave unlike malignant disease seen at other times of life. The median age for childhood cancer is six. Children frequently have a more advanced stage of cancer when they are first diagnosed. 80% of children show that cancer has spread to distant sites in the body when the disease is first diagnosed.”
[www.ChildCancer.org]

“A child with cancer must be diagnosed precisely and treated by clinical and laboratory scientists who have expertise in the management of children with cancer. Advances in treatment have been made in some childhood cancers; however, many cancer types offer very aggressive treatments with lower survival rates. Many treatments include: several rounds of chemotherapy, tumor removal, radiation therapy, bone-marrow-transplantation, and various clinical procedures.”
[www.ChildCancer.org]

This is something that was found true in Grant’s situation. He endured strong, antiquated, adult-type treatments because very little had been discovered for his disease and for his size.

Only 3% of government funding goes to pediatric cancer research. A fund was established in Grant’s name to try to start making a difference, one dollar, one child, one step, one prayer at a time.

www.grantinggracefoundation.org

Tomorrow at 11:00 a.m. Eastern Time, there will be a celebration of Grant’s short but amazing life. His favorite colors were red and blue and he LOVED superheroes, especially Spider Man, Iron Man, and Captain America. Folks have been asked to wear those shirts or colors in his memory. At 12:15 p.m. Eastern Time, there will be a balloon release there in Georgia. But if anyone wants to join in from wherever you are, Grant will be able to see them from where he is!

Please pray for the Gossling family as they continue their journey without their beloved Grant…one step, one prayer at a time. And if you have been moved or touched by this family and their little superhero, please consider giving to childhood cancer research. Then hold your kids and thank God for giving you one more day.



March 28, 2016

2016, March 28 – My Baby Girl

This morning, I am packing my bag and heading up to the Dallas area to spend a couple days with my baby girl. She’s turning 31. And she has three babies of her own. When did we get here?

Wasn’t I just 31? Wasn’t I just 13 for that matter?! How quickly the years go by! I remember my mother telling me when my children were little to cherish the time because it goes by so fast. But DAYS can be long as a young mom, and you don’t realize that those days turn into years until you blink and they’re in school; and then you blink again and they’re graduated, married, with kids of their own!


My girl was often the one to give me a little lip in the old days. But she is now the one who talks to me the most…multiple times a day, who knows the heart of my every tone, who makes a game of helping me find the words that now so often escape me. We talk about recipes, raising kids, doing life. She makes me laugh. I give her perspective.

She has the strength of the women of our family. The girl is amazing. She juggles being a mommy to three busy, adorable, loving, crazy children, and babysits her cousin’s one-year old. That makes four! Plus, she runs two businesses out of her home in addition to simply taking care of EVERYTHING. She has an internet business called, It Works!


And she has a fast growing bakery business, making beautiful and delicious homemade cakes and cookies for just about any occasion, called The Purple Kitchen. She reminds me of the Proverbs 31 woman using her gifts to provide for her family; her lamp does not go out at night, and she is never idle.

“Many daughters have done well, but you excel them all.”
Proverbs 31:29


I am thankful for my baby girl. I am looking forward to a couple days of dishes, cooking, laundry, constant noise, books, songs, and loving on her and her family. We’re going to have a Girls’ Night Out on her birthday! Make a few more memories. Have a few more conversations. Laugh a lot. Maybe even shed a tear. That’s ok. That’s life. That’s living. That’s part of knowing.

Happy Birthday, baby. I love you!


“Only be careful, and watch yourselves closely so that you do not forget the things your eyes have seen or let them fade from your heart as long as you live. Teach them to your children and to their children after them.”
Deuteronomy 4:9


March 24, 2016

Head, Shoulders, Knees and Toes

Two and a half glorious weeks. Then, the steroid injections wore off. :/

It’s been just over a year now since the joint pain began. It started popping up in my Facebook feed in Remember Last Year? Yes, I remember…thank you. It started, again, just after my CAR T-Cell trial. (I also had it after my SCT, but it had eventually gotten better.) Dr. Shah, at the time, thought it was a good news/bad news thing. That my T-cells were in there fighting the bad guys but in doing so causing inflammation in my joints. Well, that was a good story last year, but those T-cells are long gone and that story no longer holds up. So what now?

Good question. Over the last several months, doctors from many departments have run countless tests only to come up with the brilliant conclusion that “nothing appears to be wrong.” Really?! Then why can’t I walk for any length of time or climb stairs or bend and get up by myself or pick up my grandbabies?!?!!! It’s not like I’m old, and my cancer is in a manageable place. So what’s the answer?

“Chemo did it.” Well, one doctor says yes while another says no. Research tells me that it’s a distinct possibility. Is it reversible? I don’t think so. I spoke to someone just today whose friend had a double knee replacement because of chemo.

But there doesn’t seem to be any knee damage per se. And meds for inflammation didn’t help. Everyone seems to be stumped. The steroid injections helped wonderfully. They just didn’t last.

This has been almost harder to deal with than the cancer itself. We’ve gotten through the life and death aspect of my cancer…twice. We still live with it being constantly on the back burner, so to speak. We have learned how to live with my “new normal.” We are thankful for every single day!

But losing my mobility has been hard. As much as I’ve always been a mover and a shaker, it now hurts to do either of those! What pains me the most is two-fold…not being able to lift and carry my grandchildren and not being able to hike our property and all the other beautiful places we love to go. You learn to improvise, but it’s just not the same.

Over the last few years on our anniversaries, we have gone zip-lining twice, hiking in the Hill Country three times including climbing Enchanted Rock, going to Pedernales Falls, Hamilton Pool, Westcave Preserve, and countless wineries and antique shops dotted along the way. There’s more, but those are the highlights. The point is, we enjoy the outdoors and all it offers. Unfortunately, knees are a necessary component to climbing and hiking. I know that other folks who have these issues figure it out. I am just praying that my team and I can figure out a plan for mine.

May and another anniversary is just around the corner. I’m praying and planning for our next hike.




March 13, 2016

Your Child’s Journey

It is an amazing blessing to watch your children’s talents and interests blossom and grow right before your eyes. It doesn’t matter if they’re three, thirteen, or thirty-three.

My son, Josh, has penned a trilogy entitled Camelot Fallen…Rise, Reign, and Fall (due out by the end of the year). (The first two are already available on Amazon.com.) It is based on the author’s interpretation of the life of King Arthur. The telling of a good story is when it plays like a movie in your mind’s eye. The cinematic imagery Josh paints throughout the series is captivating. The story, compelling.

The author, this man, was a little boy…just yesterday. He loved books. All kinds of books. As a toddler, he would sit in his little rocker listening to cassette tapes of his grandfather reading stories to him…for hours.

We watch our little ones choose this over that as they grow. We guide. But we don’t push. They each have a path, and we have the privilege as parents to equip them for the journey. Their journey.

Enjoy the journey.

“Train up a child in the way he should go,
And when he is old he will not depart from it.”
Proverbs 22:6




March 3, 2016

Everything You Ever Wanted to Know About Bone Marrow Biopsies…or Biopsy vs Aspiration?

Yesterday, I underwent my 30th bone marrow aspiration and biopsy. I always get both. Well, 29 out of 30 times I’ve had both. Only once did I have just an aspiration. I have wondered all this time why some patients only get the aspiration while others get the aspiration AND the more in depth biopsy. So while I was waiting yesterday, I decided to do some research. So hang on. This one might get deep!

According to www.mayoclinic.org, “A bone marrow biopsy (BMB) and a bone marrow aspiration (BMA) offer different, but complimentary, information about your bone marrow cells. The two procedures are usually performed together.”

Aspirations are a sampling of the liquid portion of the marrow and are primarily utilized for cytologic assessment, cell count, cytogenetics, molecular studies, microbiologic cultures, immunochemistry and flow cytometry. The doctor/technician makes a small incision and inserts a hollow needle through the bone into the marrow. There is brief sharp pain or stinging. Several samples may be taken. The aspirate is the sample of choice for studying and classifying the nucleated blood cells of the bone marrow (eg. ratio of white to red blood cells).

Biopsies, on the other hand, allow evaluation of the marrow’s overall cellularity, detection of focal lesions, and determination of the extent of infiltration by various pathologic entities…by removing a small piece of intact solid bone marrow tissue (0.75 x 0.06 in or 2 x 0.16 cm). The bone marrow is where blood cells are made. The doctor/technician uses a larger needle to withdraw a sample of solid bone marrow tissue. The biopsy needle is specifically designed to collect a core (cylindrical) of bone marrow. There is an strong aching, tugging sensation. The biopsy of bone marrow shows the intact tissue, so that the structure of the fat cells, lymphocytes, plasma cells, fibrous connective tissue cells, and their relationships to each other, can be seen.

Most people are only given a local anesthetic to numb the site and reduce the pain. It is still a procedure, much like childbirth, where slow deep breathing proves very beneficial. For a small percentage, complete sedation may be required. In either case, the BMB or BMA is usually performed in the hipbone (posterior iliac crest). Notes are kept as to which side, right or left, was used and the alternate side will be utilized during the next exam. Scar tissue can build up which increases difficulty and pain during the procedure.

Pressure is applied to stop the bleeding and secure bandaging is required to be left on and dry for forty-eight hours. Test results usually take up to two weeks.

Now, for the reason why some get one and others get both…. Patients with Myelomas, CLL, and Lymphomas need to have BOTH the BMA and the BMB. Patients with other cancers and issues can get their answers met with just the BMA.

I don’t know about you, but I have been wondering about that for quite a while. And now we know…and knowing’s half the battle!

You’re welcome! ☺


February 24, 2016

It’s Not About Me!

Last week I took Dixie to the vet for her annual vaccinations and a new vet was on rotation. We took the opportunity to get to know each other a bit, and as is typical, we ended up talking about our kids. His were considerably younger than mine, as in still teenagers. He was quite proud of his daughter’s achievements in cheer competition but was stressed, reasonably so, about a recent injury that had taken her out of competition for a while. I am not familiar about how the cheer thing works, but obviously you move from organization to organization as you get better and better over the years. She was at the top of her game! And after ten years of competing, this was her first injury…which might actually cost her team the top honors. It all seemed quite stressful for a fourteen year old!

When it was my turn to talk, I told him about my great niece and how she had opted out of drill team after a couple of years and went strictly with theater because there had simply been too much DRAMA in drill team!! Less drama in theater. Go figure!! She is having a blast!

I then told him about when my son had been a teenager, he had played football throughout junior and senior high school. Until the summer before his senior year when he told us that he wanted to quit football his VARSITY YEAR in order to be in theater the full year instead of just being able to be in the spring musical. I was hyperventilating! We were a football family!! His uncle had played in college and professionally. I had watched football since I was nine! I had a secret dream of being the first woman professional coach! (Has that been done and I just missed it?) But I took a deep breath and remembered that IT’S NOT ABOUT ME!! He had no plans to play ball in college, nor was he really exceptional. Just average. He had always completely enjoyed it and I enjoyed watching him. But he was done. He didn’t need this. His love was music and the arts. He wanted to be a Singing Cadet in college, not a football player! So I fully supported his decision (after accepting that I had ALREADY seen him suit up for the last time!), and he ended up getting a major role in every production during his senior year. He had a blast!! And I learned, or remembered, a very important lesson. It’s not about me!

Parents, that is a lesson that is important to learn right after you bring them home from the hospital! Perhaps before you ever leave!! It is one that you will need to embrace thousands of times throughout the lives of your children. As I am typing this, I am smiling at how my children are now experiencing this with their own. Even still, sometimes we need to be reminded.



“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

“Train up a child in the way he should go:
and when he is old, he will not depart from it.”
Proverbs 22:6

“You, however, continue in the things you have learned and become convinced of, knowing from whom you have learned them, and that from childhood you have known the sacred writings which are able to give you the wisdom that leads to salvation through faith which is in Christ Jesus.
All Scripture is inspired by God and profitable for teaching, for reproof,
for correction, for training in righteousness; so that the man of God may be adequate, equipped for every good work.”
2 Timothy 3:14-17




February 22, 2016

Our Journey, and So It Continues

When I first began my blog and chose the name “Our Journey,” we were at the beginning of a very new place in our lives. I had just been diagnosed with an ornery type of leukemia and we had many decisions and changes before us.

Four and a half years have passed since that fateful day. Much has happened in my health, in our lives, and in the lives of those around us. I still have cancer, but it’s manageable. What I have been thinking about, and what I would like to continue to write about, is the journey that we continue on. Not only us…but all of us. Because we are ALL on a journey. God gives us today! If He showed us a video clip of the next months and years of our lives, we would probably be paralyzed by the fear of moving forward. But He gives us strength for the day and hope for tomorrow. How He knows what is best for us!

Please continue to walk with me as I journey this life as a wife, mom, grandmother, cancer survivor, Christian, mentor, friend, and cheerleader for my husband’s and kids’ endeavors. There’s a lot to cover. I am praying that God continues to grant that precious commodity...time.



Great Is Thy Faithfulness
Thomas Chisholm – 1925

Great Is Thy faithfulness, O God my Father!
There is no shadow of turning with Thee;
Though changest not, Thy compassions, they fail not
As Thou hast been Thou forever wilt be.

Great Is Thy faithfulness,
 Great Is Thy faithfulness,
Morning by morning new mercies I see;
All I have needed Thy hand hath provided

Great is Thy Faithfulness, Lord unto me!


Summer and winter, and springtime and harvest,
Sun, moon, and stars in their courses above,
Join with all nature in manifold witness

To Thy great faithfulness, mercy, and love.

Pardon for sin and a peace that endureth,
Thine own dear presence to cheer and to guide,
Strength for today and bright hope for tomorrow

Blessings all mine, with ten thousand beside!





February 18, 2016

The Crazy Cycle of Life

As a mother of two, step-mom of four, and having led a youth group for eighteen years, I know a LOT of young moms! I smiled to myself today as a sweet friend confessed to her Facebook family that one daughter was propped up in her big highchair enjoying her dinner, watching a video, while she was being able to get some work done. Other moms chimed in with their admissions of how they survive in their worlds. As always, my favorite was my very own daughter’s with my very own crazies. :)

(I have been lying in bed thinking about this and wondering why this relentless insomnia continues to besiege me certain nights and not others. So writing and warm milk seemed a better remedy.)

Earlier today, I had brunch with my friend and part of our conversation covered the wonderful unique craziness of each of our grandkids. I would venture to say that they are not that unique, but rather a sampling, our beautiful sampling, of the millions of kids throughout the world. Not much different than the ones we raised a few decades ago. Not much different than the ones you are raising now. Not much different than she and I. Every generation trying to accomplish the same thing…get their kids to eat and behave.

Besides my young friends, I also have numerous friends my age and older. There are many who are taking care of their elderly parents or ailing spouses. Many are fighting their own health battles. Some are dealing with joints that just don’t want to work anymore and have to be dealt with in one way or another. We deteriorate.

I remember back when I was in my late 30’s, maybe 40, and going like a crazy woman with the youth group, my kids, work, and everything else, my dad said “You’re not going to be able to keep this pace forever!” I remember laughing and telling him, “Of course, I will!” Wow! Did I ever eat those words!!

The cycle of life comes full circle. When you’re young, you somehow have the energy you need to keep up with these crazy kids and all that life asks of us. Later on, you start slowing down a bit, wondering how the time flew by so fast. Then before you know it, your daughter has you sitting down at a table trying to get you to take a bite and behave. Hopefully, you aren’t running around her house without your pants on! But payback can be really funny.



February 15, 2016

Not Alone…Deciding What’s Next

In the whirlwind of children’s birthday celebrations, I have been continuing on medications that have produced more side effects than solutions, gone back to MDA for another follow up where there was a great deal of “does THIS hurt?” and finally it was decided that it is not my joints screaming pain at me but rather my tendons. Ahhh! My tendons. Well, there you go. That make’s it loads easier!! :/ The doctor then stated, “No wonder nothing that’s been tried has been working!” Comforting!

He then decided that we would move forward with injections and that I would need to wean myself off the medication that has caused more harm than good. What was my name again??

I don’t know why I didn’t ask more questions while I was there. I am usually quite detailed that way. But lately, I have just been floating through life mentally and hobbling physically. My lower back, hips, and knees just don’t want to perform anymore…at least not without a considerable amount of pain. I have been doing water therapy/exercise since last summer. You’d think that if it were going to help it would have started by now. But I know it’s good for me, so I keep on going…even though the “old” ladies are often the ones who have to help ME get out of the pool! :/

After my appointment last week, Paul and I started trying to do some research regarding tendonitis, bursitis, etc. It mostly seemed to be related to overuse and sport injuries. That did not fit. After continued Googling, we found an article that sounded as if I had written it! It was posed as a question from a lady with cancer who had pain in several of her joints…hips, lower back, knees…. They had run every blood test, done every X-ray, MRI, CAT-scan, etc. (just like me). Nothing seemed to be wrong! They had tried a variety of medications. Nothing helped. She sounded desperate. SHE WANTED TO KNOW IF ANYONE ELSE HAD EXPERIENCED ANYTHING LIKE THIS???

YES!!!!! Oh, my word! We begin to feel like we are LOSING OUR MINDS! They throw words like “immunodisregulation” at us because I don’t think they really know what’s wrong. Chemo just screws us up…some of us more than others. But to hear that there are others out there actually going through the SAME THING is immensely encouraging, even if the doctors don’t know what or why it is.

So, tomorrow we’re going to give steroid injections into my tendons a try. OUCH! The doctor tried to explain that my joints were actually moving well but the surrounding supporters were what had given out. And tendons do not have blood flow, so they do not heal like the rest of your body. Healthy people can just rest for a couple weeks, do some rehab, and whalah! Mine has had eleven months and it just continues to get worse. He’s pretty sure that it is all damage from chemo. And since I am NOT “healthy people,” rest and rehab have not helped at all. So he is hoping that the steroids will provide 1) some relief and 2) jump start some healing. Here’s hoping!

I need it to work. I have another child’s birthday coming up!



January 6, 2016

Just Another Day at MDA

Yesterday was my first visit to MDA for 2016. As I filled out my new planner for the year, I went through last year’s to transfer birthdays and such. Just out of curiosity, I counted how many times I went to MD Anderson in 2015. 52. An average of once a week. While I’ll often go several times in one week and then not again for a few, it was still quite a number…and that didn’t include physical therapy. I am optimistic that the number this year will be lower…due to less being wrong. But that is not the reason I am writing….

I have mentioned before that I always try to be a blessing in some small way to someone at MDA. I know what it’s like to be there, to be afraid, to have questions. Yesterday was no different. After my labs, I stopped in to the Stem Cell department to say hi to the ladies at the front desk. I knew that the main gal had been due to deliver her first baby in late December so I wanted to check and see if she had a safe delivery. A woman wearing a mask and who had lost all her hair was checking in, so I was waiting until she was done. While she was waiting for her paperwork, I asked if she was getting ready for a stem cell transplant and she said that she had just had one. She was 25 days out. She asked about me, and I told her that I was 3.5 years out. She just looked at me with my head full of hair and asked if I had any ongoing issues. I gently told her that there were a few, that everyone was different, but that it was worth every bit. The first year was the roughest. Drink, rest, walk, and keep believing. I remember those first months and how encouraging it was to see and talk to someone who had made it a little further down the road. Sometimes in life, we just need to open up and share with someone. You never know how it may effect them in that moment.

Later, I was getting on the elevator to go to my car, and an older gentleman allowed me to go first. He smiled at me and asked if I was a patient. I told him I was. He asked what I had and I told him Leukemia and that I’d had a stem cell transplant. He said that he had Multiple Myeloma and was about to have his second transplant. He had his first four years ago, just before mine. We discovered that we had the same doctor and the same team…. God, MDA, and Dr. Shah. ☺ He said that his numbers had “flat lined” for a while, and I laughed and said that wasn’t a term that I would particularly like to use in our cases! ☺ His crept back like mine did, but to a greater degree, and he now is going to need to go through the process again. He then said, “You are a beautiful lady; may I give you a kiss?!” What could I say?! “Sure!” I said with a grin. He sweetly kissed me on the cheek, stepped off the elevator on his floor, and wished me well. I’m not sure who blessed who this time. I forgot to ask him name. I’ll have to ask Dr. Shah so I can pray for him by name. What a dear.

Which brings me to my final thoughts. Many of you have asked me how I am, where things stand for me. In many ways, I have been wondering the same thing. They have been running dozens of tests trying to figure out the pain issues, which was why I was there yesterday. In a nutshell, my cancer is stable. For most of the past year, it has stayed in the 2-3% range. As long as it stays low like that, they will just leave it alone. My donor percentage has stayed around 95%. As long as it stays up there, they again will just leave it alone. So that is the prayer request regarding the leukemia…stay low. Donor cells stay up. Negative markers such as 17p deletion…do not come back.

With regard to my joint pain, they have no clue. All the tests have come back negative. They fall back on their favorite words for me like “immunodisregulation” and they have mentioned fibromyalgia. Whatever. They give me drugs, then they say that they really don’t want me on them long term. I go to the Pain Mgmt doctor tomorrow to see if he has any other bright ideas. Other than that, I am starting back to my exercise routine next week. Pray that I can get back at it and not croak!

Here’s to 2016! Health and blessings to you all. Seize the day!


“Not that I have already obtained all this, or have already arrived at my goal, but I press on to take hold of that for which Christ Jesus took hold of me. Brothers and sisters, I do not consider myself yet to have taken hold of it. But one thing I do: Forgetting what is behind and straining toward what is ahead, I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.”
Phillippians 3:12-14