April 19, 2017

If Your First Name is “United”…

With all the negative press of late surrounding United Airlines, I thought I’d share a little of my own drama about another “United”…United Health Care. Today, my daughter, Bethany, drove down from Dallas to Houston to attend the funeral of the mom of one of her high school youth group friends. As I was waiting for her to swing by afterwards and have lunch with my mom and me before heading home, I was sorting through the mail. I opened a letter from United Health Care, one of many that we get on a regular basis…usually noting all my individual tests, labs, etc.

This one caught my attention because right in the middle of the page it read,
“Type of Treatment…Hematopoietic progenitor cell (HPC); allogeneic transplantation per donor.” Oh, wow! This is the approval letter for my DLI, donor lymphocyte infusion. It’s not worded quite the same, but that’s what this is!! Then I looked at the previous section noting the details and one line stood out.

What?!?! What do you mean $0.00???!!!! I read the letter front and back, over and over, and it continued to say $0.00! Needless to say, I was in shock, overwhelmed, mad, upset, worried, totally in control, and losing my mind. I called my handy customer service number and spoke to Kristen (who I am going to officially adopt!). I explained the letter I had just received and read. I told her about my leukemia, my 2012 stem cell transplant (which Blue Cross Blue Shield paid for), my 2015 CAR T-Cell trial (which UHC paid for), and how the ENTIRE STEM CELL TEAM AT MD Anderson had agreed that this procedure was what I needed so that I could hopefully live more than two years or so. I said that there is a small window in which to do this procedure because I still need to HAVE donor cells left to boost! If they choose to deny this request for coverage, they are basically signing my death sentence.

She asked if I minded holding for 3-5 minutes? “No. I’d be happy to.” During this time, Bethany got home, made our sandwiches, and the three of us were sitting at the table. At that point, I asked her to pray. She and mom started praying, not just for lunch but for this situation, for these people making a life or death decision. My life! Before Bethany even finished praying, Kristen came back on the phone and thanked me for holding. She said that there had been a horrible mistake and offered her most heartfelt apology. My procedure WAS, indeed, deemed medically necessary and the acceptance letter had already been mailed to MD Anderson. The letter I had received in error was for an incorrect procedure code or something. I asked if she could please send me a copy of the acceptance letter for my files. ☺

I had maintained my composure this entire time. Once the call (and the survey) were complete, I totally lost it. Tears of relief and “what if’s” flowed. Even though this procedure was not what we had originally planned for, we are convinced that it is what God has for me, and I was devastated to think that the financial hand of man could thwart the plan of God. How silly of me! Nothing can hinder the hand of God.

So it is with a deep breath and sigh of relief that we forge ahead. Insurance…check. Donor…check, check. Our God, Savior, Redeemer, One Who Walks with us every step of the way…check, check, check!

April 15, 2017

Take Up My Cross and Follow Him

A couple weeks ago at church, our music minister filled in for our senior pastor in the pulpit. Caleb shared with me that he and the Lord had been able to spend months preparing for this message and wondered and admired how Dean does this every week! ☺ The Lord did, indeed, use Caleb that day…especially in my heart…as I am still thinking on the verses and thoughts that he shared. They were especially poignant leading up to the verses that were read last night at the Good Friday service.

We have been studying the book of Matthew and we were in chapter 16 when Jesus was speaking to the disciples about what was about to happen to him. In verses 24-26 it reads,

“Then Jesus said to his disciples, ‘If anyone would come after me, he must deny himself and take up his cross and follow me. For whosoever wants to save his life will lose it, but whosoever loses his life for me will find it. What good will it be for a man if he gains the whole world, yet forfeits his soul? Or what can a man give in exchange for his soul?”

The question was posed if we had ever considered what it meant for us to “take up our cross?” The majority of us have never endured the pain, torture, humiliation, and persecution that the cross represents. So how do we take up our cross and follow Him? The cross for Christ meant ultimate forgiveness for a world of people who didn’t deserve or even ask for it. He willingly offered forgiveness because He and the Father have a covenant relationship with His created people. He loves us and wants us to be restored to Him...and paid the ultimate sacrifice for it. Covenant relationships start with forgiveness. That is our cross. We don’t want to forgive. We want to hold on to our grievances, our pride, our justice, our pain. In the process, we lose family, friends, church members…we lose relationship.

“Then Peter came to Jesus and asked, “Lord, how many times shall I forgive my brother when he sins against me? Up to seven times? “Jesus answered,
“I tell you, not seven times, but seventy-seven times.”
Matthew 18: 21-22

“Love is patient, love is kind. It does not envy, it does not boast, it is not proud.
It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth.”
1 Corinthians 13:4-6

“Get rid of all bitterness, rage and anger, brawling and slander, along with every form of malice. Be kind and compassionate to one another, forgiving each other, just as in Christ God forgave you.”
Ephesians 4:31-32

“Who has believed our report and to whom has the arm of the Lord been revealed? He grew up before him like a tender shoot, and like a root out of dry ground. He had no beauty or majesty to attract us to him, nothing in his appearance that we should desire him. He was despised and rejected by men, a man of sorrows, and familiar with suffering. Like one from whom men hide their faces he was despised, and we esteemed him not. Surely he took up our infirmities and carried our sorrows, yet we considered him stricken by God, smitten by him, and afflicted. But he was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was upon him, and by his wounds we are healed. We all, like sheep, have gone astray, each of us has turned to his own way; and the Lord has laid on him the iniquity of us all. He was oppressed and afflicted, yet he did not open his mouth; he was led like a lamb to the slaughter, and as a sheep before her shearers is silent, so he did not open his mouth. By oppression and judgment he was taken away. And who can speak of his descendants? For he was cut off from the land of the living; for the transgression of my people he was stricken. He was assigned a grave with the wicked, and with the rich in his death, though he had done no violence, nor was any deceit in his mouth. Yet it was the Lord’s will to crush him and cause him to suffer, and though the Lord makes his life a guilt offering, he will see his offspring and prolong his days, and the will of the Lord will prosper in his hand. After the suffering of his soul, he will see the light of life and be satisfied, by his knowledge my righteous servant will justify many, and he will bear their iniquities. Therefore I will give him a portion among the great, and he will divide the spoils with the strong, because he poured out his life unto death, and was numbered with the transgressors. For he bore the sin of many, and made intercession for the transgressors.”
Isaiah 53

“If anyone would come after me, he must deny himself and take up his cross and follow me.”

April 5, 2017

Timing & The Bucket List

When your doctor calls and drops the kind of news on you that we received recently, you begin to think through all the things you want to do before the big day comes. From the very beginning of this journey, we have been positive, believing, confident in the hope we have in God. Nothing has changed. We still covet your prayers and lay the results at His Feet. We expect the best. But we are not so naïve to realize that things do not always turn out the way we hope and plan. I have lost two very dear friends, plus countless other family and friends, to this dreaded disease. But these two were walking a road very similar to mine. These were the most difficult to accept and move forward.

So now it’s my turn to subject myself again to the wonderful, healing, scary, sometimes deadly hand of treatment. Since my disease is chronic and not acute, I am not dying this month, unless I get hit by a bus! This allows me to choose when I want to schedule my DLI (somewhat), which is actually a process rather than a one-day occurrence. (They give you a little of the cells at a time and then watch and test you to make sure that your organs aren’t going crazy and rejecting everything.)

Anyway, back to timing. First comes our anniversary at the end of May. We have always taken trips that include some type of hiking. Last year, it was fairly minimal due to my knees and inability to walk very far, but we did as much as we could. This year, we will be heading to Wichita Falls for my cousin’s daughter’s wedding the weekend after our anniversary, so we will combine that with our anniversary trip. We have been holding out hope that we would be able to go to Palo Dura Canyon, near Amarillo, this year if my knee healed well enough. After receiving the news of the upcoming treatment, we decided that my knee was good enough! We were going come hell or high water! ☺ Paul said he would carry me if he had to. (Pray that he doesn’t have to!!) We both have camel back (water) backpacks and new tripod stools for if (and when) I need a break. Just like when we climbed Enchanted Rock back in 2014 and I felt that immense sense of accomplishment, we’re going to do it again! We need this, together…before the DLI. So Bucket List #1…Palo Dura Canyon.

Back when my great niece was 8, almost 9, Mama O and I took her to New York City. It was an awesome trip! For all of Dana’s young life, she has been asking when can I take HER to New York?! My daughter, Bethany, and I both LOVE New York and Dana is turning 10 this summer. With Mama O’s health decline, I’m not sure of her ability to make another trip. We’re waiting to see what this week’s appointment tells us. But our hope is that either all four, or at least the three, of us will be able to make that epic trek to the Big Apple as a surprise for Dana’s tenth birthday…a bit early. This one is going to be a bit harder to pull off as it is a bit pricier, and none of us have won the lottery! We are thinking, figuring, ciphering, saving, hoping, praying, and trying to make this happen. This would be a huge Bucket List item for me and my girls. Bucket List #2…New York.

If there is time before MDA gets me scheduled, there is one other trip I’d love to take. It may sound silly to those of you who don’t have grandchildren, but I would love to be able to go with as many of my kids and grandkids as possible to the Crater of Diamonds State Park in Arkansas. It’s just a hop and a skip past Texarkana. It is very affordable. You can dig for diamonds, amethyst, garnet, jasper, agate, quartz, and more rocks and minerals. There are hiking trails and a small water park next door. This would be SO MUCH FUN!!! I want to make as many memories with my grandkids as possible. Bucket List #3…Crater of Diamonds Trip

Throughout all of this, we need to get my mom well and independent again. Please pray for our upcoming appointment on Thursday. She is bound and determined to go home. We want that for her, as well. But we want it under the best conditions. This corresponds to Bucket List #4…Time in the Country. We need things to be in order here to free up time for us to spend time away.

Our Bucket List is actually much longer than this and includes things like Paul’s early retirement, building our home and shop in the country, buying a bigger mill so we can have a retirement business that we really enjoy, can do together, and doesn’t kill Paul’s back, traveling, etc. But right now, it seems prudent to focus on the next 2-8 months rather than the next 2-8 years. God willing, we’ll get there. But as always…one day, one step, one prayer at a time.

“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”
Jeremiah 29:11

“Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom.
He gives strength to the weary and increases the power of the weak.
Even youths grow tired and weary, and young men stumble and fall;
but those who hope in the LORD will renew their strength.
They will soar on wings like eagles; they will run and not grow weary,
they will walk and not be faint.”
Isaiah 40:28-31

“I love you, LORD, my strength.
The LORD is my rock, my fortress and my deliverer;
my God is my rock, in whom I take refuge,
my shield and the horn of my salvation, my stronghold….
For who is God besides the LORD?
And who is the Rock except our God?
It is God who arms me with strength
and keeps my way secure.
He makes my feet like the feet of a deer;
he causes me to stand on the heights.
He trains my hands for battle;
my arms can bend a bow of bronze.
You make your saving help my shield,
and your right hand sustains me;
your help has made me great.
You provide a broad path for my feet,
so that my ankles do not give way….
Therefore I will praise you, LORD, among the nations;
I will sing the praises of your name.”
Psalm 18:1-2, 31-36, 49

April 2, 2017


In my last conversation with Dr. H, she let me know that the first step in the DLI process was to get insurance approval. We are with a different provider than we were when I had my transplant, so we are praying that all goes well with that conversation.

The second step is to reconnect with my donor to see if he is still available and willing to donate a second time. MD Anderson cannot reach out until the insurance is secured. Dr. H asked me if I had ever been in communication with my donor, and I told her that I had. I tried to send the required paperwork after my first stem cell anniversary, but it somehow didn’t connect. But the second year it did. So just before my two-year “Re-Birthday,” I was able to send him a long letter and he called me! It was the coolest thing ever!!! Anyway, Dr. H said that while they couldn’t contact him until everything was in order, I could!

So yesterday, I sent Richard, my mailman hero, an email recapping all that has been going on over the last few years…coming out of remission shortly after my 2-year “re-birthday” anniversary, the CAR T-Cell trial in 2015, my knee replacement in 2016, and the continued increase in my CLL numbers and decrease in my donor cell count over the past year. I let him know that the MDA stem cell team had recommended the DLI over other treatment (or non-treatment) options. And I asked if he would be willing to consider donating again. The prep time for him would not be as difficult as the first time, from what I understand. I let him know how very much this means to me, my husband, my family…. But no matter his decision, we knew this was in God’s hands.

This morning, he wrote me back to say that he would gladly help!! ☺ My heart leapt with joy and I immediately began to cry. The DLI could not happen without him. I could not use another donor. That would mean starting completely over with an entirely new transplant, which does not hold particularly good odds. The DLI is simply “boosting” the one I already had, with the goal of kicking down the growing cancer cells and increasing the healthy donor cells. Ultimately, the goal would be for me to be 100% Richard!! ☺ Or at least as close as possible…DNA/cell wise.

So today, our praise to God and thankful hearts is that HE SAID YES!!! Now we just have to wait for insurance approval and the right timing.

That is another story.

“Thanks be to God for his indescribable gift!”
2 Corinthians 9:15

March 20, 2017

He Goes Before Us

As I mentioned in my last post, my doctor was planning on presenting my case to the whole team for a group opinion on what was the best plan of action for my cancer treatment. If you are one of my Facebook friends, you may have already read that she called me this past Friday with some rather unexpected news. Paul and I have had a little more time to think, pray, and research since then, so I wanted to share some of my thoughts with you and let you know where we are since the train hit us a few days ago.

First of all, the call. Dr. H called to first check on me (so sweet) and to let me know that the team had almost unanimously voted on the DLI (Donor Lymphocyte Infusion) over the targeted therapy drug Ibrutinib. Only my Leukemia doctor had voted for the drug. The entire stem cell team had voted for the DLI.

So what’s the difference and why would they make this choice? Good question! The DLI is a much riskier treatment choice, but it is the only option that offers another chance at remission…which could buy me longer life. The drug therapy, from what I’ve read, averages about two years symptom free progression before we would have to make another decision or before I could possibly be out of options. If I wait too long to do the DLI, I may not have high enough donor counts to “boost.” I might be at the point where the only option is a second full transplant, and the mortality rate for a second transplant is not nearly as high as the first.

So it seems their thinking is to try to get my donor count back up, try to get me back into remission if at all possible, and then save the Ibrutinib as my backup plan down the road if and when I have run out of options.

Just to help folks who are curious better understand the details of a DLI, here are the basic details of how it works. They start by preparing my body with Rituximab, a monoclonal antibody that targets the CD20 antigen on normal and malignant B-cells. Then the body’s natural immune defenses are recruited to attack and kill the marked B-cells. Stem cells do not have the CD20 antigen. This allows healthy B-cells to regenerate after treatment. (This drug also helps with GvHD.) The side effects are primarily while receiving the drug and do not continue on. The nickname for it is “Shake and Bake!” I did. Probably will again. But you get over it.

For the DLI, the original donor is again harvested (if willing and available, please pray). His lymphocytes, a sub-type of the white blood cell, are infused to augment an anti-tumor immune response to ensure that the donor stem cells remain engrafted. These donated white blood cells contain cells of the immune system that can recognize and destroy cancer cells. The goal of this therapy is to induce a remission of the patient’s cancer by a process called the “graft-verses-tumor” effect (GVT). The donor T-cells can attack and control the growth of residual cancer cells providing the GVT effect. Complications, as we have discussed before, include acute and chronic GvHD…graft-versus-host disease and bone marrow aplasia, resulting in immunosuppression and susceptibility to opportunistic infections. Other than that, it sounds like a great idea!! ☺

Our main fear has been the thought of GvHD. I have dealt with mild amounts of it after my transplant, but they were able to get it under control. When you have had a dear friend die of GvHD complications, those images are forever burned into your mind and it is difficult at best to choose to subject yourself to something that could result in the same end.

Then came Sunday.

We had offered to take my mom, who has been staying with us since her trip to the ER last Tuesday, to her church yesterday. But when she woke, she was not really feeling up to getting out yet and urged us to go on to our church and let her stay at home and rest. God had a reason for me to be at Creekside yesterday. When our pastor, Dean Wood, was preparing his sermon for this week, I’m certain that he did not correlate my situation with his passage. But God did.

We have just started studying the life of David…starting with getting to know Samuel, the introduction of King Saul, and this week we met Jonathan. We looked at the map of the terrain of the area, where the enemy was in comparison to Israel, how the Philistines were completely in a position of power over the Israelites.

“Jonathan said to his young armor-bearer, ‘Come, let’s go over to the outpost of those uncircumcised fellows. Perhaps the Lord will act in our behalf. Nothing can hinder the Lord from saving, whether by many or by few.’”
1 Samuel 14:6

“Perhaps the Lord will act in our behalf. Nothing can hinder the Lord from saving!” If God has purposed the victory, nothing can thwart it! Faith takes risks.

Jonathan and his armor-bearer went toward the Philistine camp and decided that if one of them asked them to “come up” then that would be a sign from God that He was going to deliver them into their hands. They did and He did! They slaughtered twenty men before the rest became confused by God. Then the Israelites saw what was happening and came in and drove out the rest. Victory…because one man said “perhaps the Lord will act in our behalf” and acted on it.

The Lord has been acting on our behalf for the past five and a half years. He has been graciously answering yes to the prayers of many faithful family and friends. So we are going to step out in faith as Jonathan did with his words on our tongues and in our hearts…
”Perhaps the Lord will act in our behalf. If God has purposed the victory, nothing can thwart it!”

Faith takes risks.

February 27, 2017

My Doctor Called….

Last Friday, late afternoon, shortly before we headed out for an evening of good music and old friends, Dr. H called to check on me. It is one thing to have had one amazingly attentive doctor in my life, but to now be able to increase that count to two is truly a gift! She wanted to see how my endoscopy went. I giggled and told her it went great...I was asleep!! ☺ She had the results that basically showed that while I had evidence of gastritis (probably from all the pain meds I had been on for my knee surgery and dental procedure) that it was now inactive and I shouldn’t need treatment. So that was a relief. She asked how my symptoms were, and while they are much better, I am still having issues with nausea on a somewhat regular basis. So who knows…. But we have crossed one thing off the list.

Then she wanted to re-visit our last conversation about my cancer numbers. You know…the “we have GREAT NEWS” conversation. LOL! I told her that I had also spoken with Dr. Shah and that she had sort of spoken my language and gotten me on the same page, so I was good to go. I also told her how very thankful I am for my new team, their care and attentiveness, wonderful attitudes, thoughtfulness, and thoroughness…it all made me feel very safe and cared for. She understood the relationship I had with Dr. Shah, so it seemed to mean a great deal to her for me to embrace our new relationship.

Then she let me know that some other results had come back since we last spoke. The chimerism…donor percentage level. Shortly after my stem cell transplant, I had successfully reached 100% donor count, which is the goal. Out with the bad, in with the good. Little by little, some of my old bad guys who had been hiding around a nook or cranny and didn’t get killed all the way, started rearing their ugly heads and barging back in. My donor count went down to 95%. Still ok. The past year it has hovered between 89-92%. This count is now down to 82%. ☹

Now let’s go back to my other number that we follow. My lymphocyte count has grown from 2 to now 47% in a year. The window between growing lymphocytes and decreasing donor counts is becoming something to watch.

But I thought that last week she said that we weren’t going to concern ourselves with numbers anymore! Well, maybe that was a bit of an overstatement. Friday, she told me that she is ready to present my case to “the team” (the group of doctors in each department at MDA who discuss all their patients and make recommendations together on each case). There are basically two paths to take…two completely different paths.

The first option, one that we discussed with Dr. Shah before we did the CAR T-Cell trial back in 2015 is a Donor Lymphocyte Infusion (DLI). If you have followed me for a while, you may remember me writing about this in the past. This is like a mini-transplant booster. They re-harvest from my original donor (if he is still willing) and inject/infuse the lymphocytes (a sub-type of the white blood cell) into me with the goal of achieving Graft versus Tumor (GVT) effect. That’s where the donor lymphocytes, which are T-cells, attack and kill residual cancer cells. That’s the plan.
It can get me back into remission and back to full donor count. (A second full transplant is much more risky but not off the table down the road.)

The problem is Graft versus Host (GvHD) disease. That’s when the donated bone marrow or stem cells attack your own body cells. This happens because the donated cells (the graft) see your cells (the host) as foreign and attack them. Somewhere between 1-4 out of every 5 people will develop some degree of GVHD! The incidence of GvHD is very high with DLI’s. Mine was very mild after my transplant. Some in my gut and more with my skin. But we were able to get it under control. It can last for a few months. It can last a lifetime. I have a dear friend who died an extremely painful death due to GVHD. There are no guarantees on this one. It is no respecter of persons.

The second option will most likely be the new immunotherapy drug called Ibrutinib, or Imbruvica. It is touted to improve survival and symptoms. It does not achieve remission. It just helps you not die. Which is good! Folks could conceivably live on this drug “inevitably” while researchers continue to look for new and better alternatives. This did not even exist when I was diagnosed! And it supposedly works even on folks with 17p deletion. So that is a plus!

So this looks like a no brainer, right?! Go with the drug!! Well, there are side effects to it as well. Bleeding problems that could lead to death. Infections, decrease in blood cell counts, heart rhythm problems, high blood pressure, secondary cancers, tumor lysis syndrome (TLS) which can cause kidney failure and the need for dialysis, seizure, and even death. Most common side effects are diarrhea, muscle and bone pain, rash, nausea, bruising, tiredness, and fever. Wow. Been there, done that, have the t-shirt!

So, yeah, this was a fun post! I just wanted to lay it out there and let you know what we were looking at, what we are praying about, what we are researching the pros and cons of. Yesterday, a loved one told me that I’ll know…just keep following my gut. Well, our gut, our heart, our God has led us well so far. We’ll keep listening to that still small voice.

“I will instruct you and teach you in the way which you should go;
I will counsel you with My loving eye upon you.”
Psalm 32:8

“Make me know Your ways, O LORD; Teach me Your paths. Lead me in Your truth and teach me, For You are the God of my salvation; For You I wait all the day.”
Psalm 25:45

February 5, 2017


This past Wednesday, I had my appointment for my regular labs, a CT, and to finally meet my new stem cell team. I haven’t had a CT since 2014. I had wondered why they didn’t do one during my last annual check-up in May, and I learned during this visit the reason why processes had been changing. I used to get a BMB (bone marrow biopsy) and a CT scan almost every time I turned around. Then they became fewer and fewer. I thought it was just because my numbers had been lower. But no. That wasn’t it. The entire protocol for CLL is changing. And it looks like I’m going to have to change the way I think, and feel, about the whole thing.

First of all, I want to thank all of you who have prayed for this transition to my new doctor team. The whole group seems wonderful. Nurse Kellie has been with Dr. H for fourteen years! That has to say something right there. And she’s been at MDA for twenty-four years! She was delightful and very efficient. My new PA (physician’s assistant), Katie, is a jewel. I was really dreading this change because I LOVE my Mary! It was hard enough losing Dr. Shah without having to lose Mary as well. But such is life. Katie has already proven to be incredibly helpful, perky (you know I like perky), responsive, and caring. Finally, Dr. H came in. She is very different from Dr. Shah…a bit quieter, but still communicative, friendly, knowledgeable, caring. She took her time with me, answered my questions, and educated me with regard to the new direction CLL protocol is headed. She even has a bit of a dry humor as she commented to me, “You’re not going to die! No one dies of CLL anymore!” I think she also wanted me to know that she has my back.

I have known, and mentioned on my blog, that two, now three, new targeted therapies have been discovered since I was diagnosed in 2011. Ibrutinib (Imbruvica) is a targeted drug that even works for folks like me who have hard to treat varieties like 17p deletion. Idelalisib (Zydelig) is another targeted drug. They both block a kinase protein. This drug helps treat CLL after other treatments have been tried. Venetoclax (Venclexta) is a drug that targets BCL-2, a protein in CLL that helps them survive longer than they should. It is especially used in patients with 17p deletion, typically after at least one other treatment has been tried.

Dr. H said that the new protocol is not as much numbers based as it is symptoms based (very enlarged lymph glands, enlarged spleen, low platelets, etc.). For months, we have been closely monitoring my flow cytometry results, watching those numbers double just about every two months. It’s been quite disconcerting to say the least. I have been able to tell, since I am quite in tune with my body, that my lymph glands are slightly enlarged. (Thus, the decision for the CT scan.) I have very little energy or stamina. And I spent quite some time dealing with ongoing nausea. So when should I be concerned?

Good question. Not right now. My WBC (white blood count) and platelets are still fine. In fact, she said that she has had patients with high blood counts (30-40+...high for CLL, not ALL) and still didn’t treat because they were still asymptomatic otherwise. Can you even begin to imagine how foreign this thinking is compared to where we’ve been?! My CT did show slightly enlarged lymph glands in my neck, especially on the left side, and a thickening of my chest wall…whatever that means. Plus, a hiatal hernia. Yippee! But the glands aren't as big as an egg sticking out of my neck, so I'm good! So, we are back to the ever favorite “Watch and Wait.” For those of you without cancer, I’m sure this sounds great! Perhaps for those of you WITH cancer, it might sound peachy as well. I AM thankful that mine is not growing as quickly as it seemed to be there for a while. What is difficult, or emotionally disconcerting at times, is the constant unknown. I am thankful for how this disease has taught us to be thankful for every day, every minute; to keep short accounts, to look for the beauty and the good, to laugh, to love, to cherish. I have learned a great deal from many who have gone before me and those who have walked with me. I am thankful for my God and for what He continues to teach me every day.

So, NEW CLL, here we come. We will still be armed and prepared because that’s what we do. We will watch and wait and not be dismayed because we have a God who calms our hearts and fears. I will continue to reach out to those around me at MDA because I was once that person. I guess He’s not finished with me yet.

“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.”
Isaiah 40:10