Keep Walking

This morning during my quiet time, just a couple days after the annual LLS Light the Night Walk, my devotional encouraged me to not be anxious about the weakness of my body. Rather consider the aging process as the opportunity to continue growing stronger in the Lord.

“I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.”
Psalms 139:14

This year, the LLS Walk was my most difficult to complete. My knees, my joints, despite the months of physical therapy, are just not holding up. My stamina is minimal. But…I will keep on walking. God continues to hold me up, and I will continue to lift Him up.

“But if we walk in the light, as he is in the light, we have fellowship with one another, and the blood of Jesus, his Son, purifies us from all sin.”
1 John 1:7

“…Love the Lord your God, walk in all his ways, obey his commands, hold fast to him and serve him with all your heart and all your soul.”
Joshua 22:5b

“Blessed is the man who does not walk in the counsel of the wicked
or stand in the way of sinners or sit in the seat of mockers.
But his delight is in the law of the Lord,
And on his law he meditates day and night.”
Psalm 1:1-2

“Blessed are those who have learned to acclaim you,
who walk in the light of your presence, O Lord.”
Psalm 89:15

“My son, keep your father’s command and do not forsake your
mother’s teaching. Bind them upon your heart forever;
fasten them around your neck. When you walk, they will guide you;
when you sleep, they will watch over you;
when you awake, they will speak to you.
For these commands are a lamp, and the corrections of discipline
are the way to life.”
Proverbs 6:20-23

“This is what the Lord says: ‘Stand at the crossroads and look;
ask for the ancient paths, ask where the good way is, and walk in it,
and you will find rest for your souls’….”
Jeremiah 6:16

“He has showed you, O man, what is good. And what does the Lord
require of you? To act justly and to love mercy
and to walk humbly with your God.”
Micah 6:8

“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

“And this is love: that we walk in obedience to his command. As you have heard from the beginning, his command is that you walk in love.”
2 John v6

This past weekend, many of us either walked or ran to raise research money and awareness toward the ongoing killer of blood cancers. Everyday leukemia, lymphoma and other forms of blood cancers are claiming lives, young and old. Our prayer is that these funds will help researchers find the cure.

But how is our daily walk raising awareness for the ultimate death? What does our walk say about what we believe? Cancer or no cancer, all our days are numbered. We need to make them count. Those of us who know the Answer, know the Cure. Let us not waste our days. Walk with purpose. Walk in obedience. Walk in love.

Walk for Him.

What is YOUR Wellness Quotient?

This morning while I was watching the news, they were talking about how folks could minimize their health risks for many diseases such as cancers, heart disease, diabetes, etc. by simply eating a more healthy diet and by exercising. They also mentioned including stress reducing activities such as yoga, meditation, and again exercise, as stress is another primary factor in many of these diseases. In fact, they mentioned that the mayor was making today a special day to focus on these health-based, life-improving, possibly life-saving, topics. How nice of her.

(On a side note, my most recent bone marrow biopsy and genetic testing came back about the same as it has been. I still have minimal residual CLL with no 17p deletion. So in a nutshell, I have very small leukemia, growing at a very slow rate. We’ll take that for now.)

This morning’s news topic caught my interest because besides a healthy lifestyle, they also talked about attitude and how important it is to stay positive. I have personally walked the walk of medical depression after my stem cell transplant and I know how difficult it is to crawl out of that hole. This morning after my aquatic class, I was talking with a sweet lady whose husband has COPD, and a host of other health issues, and has basically given up. It is very discouraging to her and she does not know how to help him. It is almost impossible to help someone who doesn’t want to help himself. That is one area where I am so proud of my mom. Even during the past week after she fell, even through the pain, she never gives up. She keeps going, sometimes to my chagrin. She’s a fighter. I’ll take that.

I’m also proud of my daughter, Bethany. She has been fighting her weight for years and has finally gotten the upper hand. She is at 40 lbs and counting and looks and feels amazing. She is a great wife, mom, daughter, friend, baker, and entrepreneur. When you decide to make a change in your life, BAM! That’s when it happens.

I have another friend, Deena, who has been training to run in the October LLS run in San Francisco to raise money for Leukemia, Lymphoma, and other blood cancers. Besides being a childhood cancer survivor herself, she is running for so many others of us in her life and others she doesn’t even know. It’s hard. I can see it. But I know beyond a shadow of a doubt that it will be so worth it.

“I discipline my body and make it my slave so that after all this, after I have brought the gospel to others, I will still be qualified to win the prize.”
1 Corinthians 9:27

“Therefore, since we have so great a cloud of witnesses surrounding us, let us also lay aside every encumbrance and the sin which so easily entangles us, and let us run with endurance the race that is set before us.”
Hebrews 12:1

I know that throughout these past four years, we could have chosen frustration, we could have chosen fear, or we could have chosen joy. Through the grace of God, even though there have been times of frustration and fear, we chose joy. Everyone has their own journey, their own potholes, detours, road construction, and occasional wrecks. The goal is to keep the Light on your road and stay pointed in the right direction!

None of us have any guarantees for our tomorrows. Choosing a healthier diet and exercise makes good sense. A positive attitude makes you, and everyone around you, happier. God has already numbered our days. It’s up to you to make them count.

Be fit. Eat right. Think well.

Love Him. Love others.

Smile.

“Fit for Life”

I need to start with two points. First, it is very difficult to find a title with the word “fit” in it that hasn’t already been used! Wow! Second, I am humbled and honored that folks still want to hear from me. I received an email yesterday from someone I do not know, but who follows my blog, asking for an update. Since I just had my bone marrow biopsy yesterday, I won’t have the results back for a week or so. And my labs revealed that my red blood cells have not recovered since my last chemo. It has now been six months…plenty of time. So they took some additional blood to run further tests along those lines. They may want to do a colonoscopy. ☹ More on that next week.

For now, I will share the importance of fitness and exercise throughout the cancer/stem cell journey. First of all, it’s hard! It’s hard when you’re healthy!! It’s compounded when you have cancer or have gone through some sort of treatment. At least, it has been for me. The fatigue that often accompanies cancer is not a good partner with exercise. But if you yield completely to the fatigue, it will overtake you and only get worse. You must move.

While I was in the hospital for my stem cell transplant, there were regular “exercise” classes that we were encouraged to attend. It was mainly to promote movement and help regain (or not continue to lose) strength. Once home, it was much more difficult to continue the routine on my own. I was fairly consistent with my stretching, but my strength was waning.

After the CAR T-Cell trial, my joints felt as if I had been run over by a CAR! After trying a shot in one knee that didn’t last for long, the doctor prescribed physical therapy including aquatic therapy. After two sessions per week for eight weeks, I was just beginning to feel a measure of improvement. They had also given me exercises to do at home, which I did fairly well. I wanted very much to feel better, to get stronger!! With my sessions coming to an end, the PT suggested that I join a gym, remembering to use all that I had learned. And so I did.

As most folks who know me well will attest, I don’t do anything half way. I jump in with both feet. The same has held true with my gym membership. For the first three weeks, I went every weekday, alternating between the aquatic class and the circuit training machines and bike. I have pushed myself as far as I am able. Many of you heavy hitters would grin at the light weight levels I’m on, but it’s all I can handle right now. And I’ve already seen improvement in some areas. My sweet hubby thinks I may be overdoing it a bit and suggested that I take a day off during the week. ☺ But right now, I feel like this is my job…to work at getting my body strong enough to handle whatever gets thrown at it next. And strong enough to enjoy the life and people I love! (I am having to take a short break after this BMB, however.)

I chose the title “Fit for Life” for two reasons. One, I have to be mindful of my body (how I care for it, what I put in it) to help prolong my life. We all do. Some of us are just a bit more reminded of it on a daily basis. Two, I read the book “Fit for Life” probably 35 years ago when I was in college and have tried to base my eating lifestyle primarily on their principles. It has worked well for me…except for the whole leukemia thing! ☺

While I get frustrated with my slow progress in the gym, I am proud of myself for going. I am also very proud of my sweet friend and childhood cancer survivor, Deena, who is training for the big LLS run in October. She is so strong. She has come so far. She is an inspiration to me to keep fighting, keep moving forward, keep believing, keep expecting just a little more of myself because one day, God willing, I’ll not only be able to bend down again, I’ll be able to run! Well, maybe just walk really well. ☺


“Therefore, having so vast a cloud of witnesses surrounding us,
and throwing off everything that hinders us
and especially the sin that so easily entangles us,
let us keep running with endurance the race set before us.”
Hebrews 12:1

Results and Questions

This past week, I got the results to my restaging tests. I appreciate all the prayers and wanted to pass along the news. The PET and CT scans were both clear, except for one little spot that supposedly has been there for eight months and isn’t doing anything. The areas under my arms and in my groin area that have been sore are attributed to the inflammation that goes along with the joint issue. My labs look fine. A few things are still a little low, but I’ve been that way for a long time, so no big deal. It just means that I still have a weak immune system. The test that took the longest to get back revealed that my abnormal cells have increased slightly, but they are still in the minimal range. And my donor cells are holding in there at 95%. Whew! So we will continue to watch and wait. Fortunately, my doctor watches very closely!!

While I am very thankful for these results, it is difficult right now to understand…. WHY? Why am I given more time, more weeks, months, maybe even years with my family when others who have walked similar walks are not? I know as a believer that these are not questions that I will find answers to on this side of heaven. I know that God has numbered our days from the beginning.

“Your eyes saw my unformed body; all the days ordained for me
were written in your book before one of them came to be.”
Psalm 139:16

I walked through the first phase of my cancer journey with a friend who had SLL, a sister cancer. He had the same care, the same belief, the same support, but not the same outcome. Now another dear friend, who we had the privilege of mentoring through his stem cell transplant, is at the end of his fight. It feels like part of me goes with each of them. But God’s Word assures that their days were ordained. Cancer was not in ultimate control.

So what would God have me to do since He’s keeping me here? Well, there are a few things that we’ve thought of. First, I intend to enjoy this sweet man of mine. Second, I hope to spend as much time with these six grandchildren as we possibly can. Third, I would like to keep paying it forward. Paul and I both feel that we have been given this opportunity to share and encourage others in their cancer walk. Every time I’m at MDA, I end up talking to someone who is new to the journey. Maybe it’s time for me to go there for more than just appointments. Maybe I can help answer someone else’s hard questions.

For now, I will say thank you to my Lord, my doctors, my caregiver husband, and my prayer supporters for getting me this far. I can’t say that I understand, but I can say that I’m thankful.


“Yet this I call to mind
and therefore I have hope:
Because of the Lord’s great love we are not consumed,
for his compassions never fail.
They are new every morning;
great is your faithfulness.”
Lamentations 3:21-23

"It’s Just Hair” and Another Round of Restaging Tests

You’d think I’d have the hang of this by now. This is not my first rodeo. I know all the right words to tell myself and others going through this. “It’s just hair.” “It’ll grow back.” “It beats the alternative!” But it doesn’t change that feeling you have when you look at yourself in the mirror day after day. It’s hard. That’s all there is to it. I don’t look the way I used to.

For whatever reason, I never lose all my hair like most other cancer/chemo patients. Not to downplay the difficulty of that road, I almost think it would be easier to just get it over with than the months of handfuls of hair falling out, watching it get thinner and thinner. I had a ton of hair to start with, so people don’t notice the results of mine quickly. It took about three months of daily hair loss to finally get to the point where I just couldn’t do anything with it. Plus, I turn another shade of gray with every treatment. ☹ And with both comes a texture change. Still I try to remind myself, “It’s just hair.”

It grew back last time, eventually. I know with reasonable confidence that it will grow back again this time. But even if it doesn’t, I am still alive! I have a friend who is battling GVHD right now, and I’m worried about my hair! That brings it back into perspective! But we all have our own fight, and I am still fighting to get back into remission, which brings me to part two.

Yesterday, I had labs, PET and CT scans. Today I meet with Dr. Shah and then get my bone marrow biopsy to complete my “re-staging.” That means they will see what stage my cancer is and how I’m doing overall. I have been having some pain under my arms, in the lymph area, so they are mildly concerned about that. They continue to be SO diligent in my care. I am incredibly blessed to have this team of doctors by my side.

We are so thankful for your continued prayers on our behalf. We thank God for each day and suck the marrow out of each day He gives us! Cancer changes your perspective. I have met numerous people out and about who comment on how joyful I seem. Life is too short to let the little things rob you of your joy.

Choose joy.


“May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope.”
Romans 15:13

Heritage: The Women in My Life

With the birth of yet another grandchild, I have been thinking of the rich heritage I have been blessed with as a woman. Girls don’t just wake up one day and instinctively know everything there is to know about being a mom and homemaker. They observe it over decades of formative years, watching their mother, grandmothers, aunts, great-aunts…. Well, they do if they are fortunate enough to come from a family like mine.

As I was thinking back about the influence of the women in my family, I first thought of my mom and her steadfast dedication to a near perfect home! It was neat, clean, and organized; we had three homemade meals per day, plus desserts. We were taught how to help and be a part of the daily chores. Mother ironed everything!! It took me a while after I was grown to loosen up on some of those practices. ☺ But the thing I remember besides learning how to DO everything, was just being with my mom…talking about any and everything while we did what we needed to do.

My grandmother, Mamie, could do it all and never really seemed stressed. She always had a full course meal on the stove, even when she wasn’t expecting company! Someone would always drop by, and there would be plenty to eat. She was warm and loving, did not know a stranger, took care of everyone, and mowed her own lawn up until her early 80’s. She was tough and soft all at the same time. I loved sitting on the front steps with her and shelling peas or standing in the kitchen drying dishes while she washed. It makes me cry just remembering those times.

Every one of my aunts had their own influence on my life as well. Some were quiet and sweet wives and mothers who lovingly cared for their families. Others were talkers, like me, and made me laugh and see the lighter side of life even when things were hard. Several worked outside the home and still managed to balance home and family. One enjoyed sharing with me her love of all things beautiful. Another enjoyed sharing the outdoors, the love of plants, and family history.

As I think about all these women and then about the women they produced, I am humbled and grateful. My cousins and I are all so very much alike because we were wrought by the same women. My daughter and her generation of cousins are following in the same steps because of the same. What a beautiful heritage.

Thank you Mamie, Mother, Aunt Maydene, Aunt Essie, Aunt Polly, Aunt Dottie, and countless other aunts, great-aunts, and “aunts” from church who have invested in my life. I love you all more than I can ever say. I hope this at least says a little.


“She opens her mouth in wisdom, and the teaching of kindness is on her tongue.”
Proverbs 31:26

Be Patient, Be Kind

I have a lot on my mind and I’m not quite sure how all of this will flow together, so we’ll just see where the Lord leads.

On the health front, my doctors decided to “watch and wait”...very closely. They will be doing my “restaging” on July 7-8 when they will do another round of extensive labs and a bone marrow biopsy. Before then, the Ortho team will be taking images of my knees and doing a re-evaluation of my joint problems. The T-Cells did a number on my joints!

They have also prescribed aquatic therapy with the hope that it will help me regain not only some strength, comfort, and range of motion in my joints but also regain strength and stamina overall. I am actually looking forward to it! We continue to covet your prayers.

During the last couple of months, we have been to three weddings, had a new grandbaby, and have mourned the loss of several …mostly parents of friends, and one husband of a lifelong friend. The weddings were filled with joy, family and friends, and lots of remembering and stories. The birth of our newest grandson was as well. As I attended the memorial services that I could, I found much of the same thing. While there were tears at all three, for different reasons, there was joy, family and friends, and stories.

There was something else that I found in common. Every one of these had a deep, lifelong, multi-generational relationship with the Lord. It wasn’t a relationship of lip service only. It was one of truth and commitment, grace and forgiveness. It was there to provide peace at a home-going, confidence in marriage, a full heart at the birth of a child.

I watched yesterday as some of my dearest friends made their final tributes to their mother and grandmother. I listened to how her sweet husband loved her as Christ loved the Church, sacrificially, with patient care and kindness, all the days of her life. What a precious testimony.

I was then reminded of my own sweet husband and his tender, kind care, his patient ways, his complete commitment to protect and provide, and my heart begged for many more years to grow old together.

At my appointment earlier in the week, I told my doctor that while I don’t struggle with the fact that I still have cancer, the lack of stamina is what makes me sad or frustrated. I spent my whole life going at a break-neck pace, and now…well let’s just say I take things quite a bit slower. She just smiled and said that it took them a while to get me this way (with all the chemo, cells, drugs, etc…not to mention the disease itself), it’s going to take a while to get better. “Be patient, be kind to yourself.”

That was probably the best advice I’ve gotten in a long time. And if you think about it, it’s really good advice for just about anyone. It can also be turned around. Simply be patient, be kind. My, that would cover quite a lot!

As I again think of Mr. Martin and the years that he loved and cared for Paddy, his patient loving kindness stands out for not only his family but all who knew them to follow.

Be patient, be kind.


“Be kind to one another, tender-hearted, forgiving each other,
just as God in Christ also has forgiven you.”
Ephesians 4:32

“He has told you, O man, what is good; And what does the LORD require of you, But to do justice, to love kindness, And to walk humbly with your God?”
Micah 6:8

“With all humility and gentleness, with patience,
bearing with one another in love”
Ephesians 4:2

“Love is patient and kind; love does not envy or boast; it is not arrogant”
1 Corinthians 13:4

“But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, self-control; against such things there is no law.”
Galatians 5:22-23

Pray Hard. Sleep Well.

A couple Sundays ago, Pastor Dean spoke from Acts 12 about the story of Peter when he was in prison. The church was praying earnestly that God would deliver him. All the while, Peter was snoozing away between the guards. While God’s people were still in prayer, an angel appeared to Peter, led him safely out of captivity to the very house where the prayer meeting was being held. The people were so shocked that they almost didn’t let him in! ☺ Peter must have believed a little more than the prayer warriors did!

During these last almost four years, our family, friends, the body of Christ, have prayed for me, for both of us. They have prayed for healing, for strength, for peace. While we are still walking this walk, and it seems that we will be for some time, God has more than answered these prayers! And He continues. He has given me time. He has given us peace.

He has also given me and Paul the opportunity to share our journey, our experiences, our hearts through conversations at MDA, on my blog, and in the lives of dear ones walking the same walk. How God blesses even during challenges!

“But you are a shield around me, O Lord; you bestow glory on me and lift up my head. To the Lord I cry aloud, and he answers me from his holy hill. I lie down and sleep; I wake again, because the Lord sustains me. I will not fear….”
Psalm 3:3-6a

“I will lie down and sleep in peace, for you alone, O Lord,
make me dwell in safety.”
Psalm 4:8

From “Jesus Calling”…
“I am with you, watching over you constantly…. Nothing, including the brightest blessing and the darkest trials, can separate you from Me. Go through each day looking for what I have prepared for you. Accept every event as My hand-tailored provision for your needs. When you view your life this way, the most reasonable response is to be thankful.”

“So then, just as you received Christ Jesus as Lord, continue to live in him,
rooted and built up in him, strengthened in the faith as you were taught
and overflowing with thankfulness.”
Colossians 2:6-7

“The peace that I give you transcends your intellect. When most of your mental energy goes into efforts to figure things out, you are unable to receive this glorious gift. I look into your mind and see thoughts spinning round and round; going nowhere, accomplishing nothing. All the while, My peace hovers over you, searching for a place to land.

Be still in My presence, inviting Me to control your thoughts. Let My light soak into your mind and heart, until you are aglow with My very being. This is the most effective way to receive My peace.”

“Now may the Lord of peace give you peace at all times and in every way.
The Lord be with all of you.”
2 Thessalonians 3:16

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.
Phillippians 4:6-7

“Relax in My healing, holy presence. Let go of cares and worries….”

“Be still, and know that I am God.”
Psalm 46:10


Pray hard. Sleep well.

Why Wait?

Yesterday was a frustrating day at MDA. Results from my bone marrow biopsy were inconclusive on the day that we had thought that we would decide on the next steps in my treatment plan. Instead, we would have to wait until the cytogenetics (FISH) results came back and probably reschedule another BMB. :/

In addition to the delay because of incomplete tests, my new leukemia doctor had a conversation with my stem cell doctor and encouraged her to look at me from a different perspective. From a leukemia doctor’s perspective, I am not at a stage that he would recommend treatment. From a stem cell doctor’s perspective, I am relapsed, no longer in remission, and we need to fix that! I have leaned toward my stem cell’s doctor’s view because I like NOT having leukemia!! But after researching my most recent alternatives, the risks seem to far outweigh the benefits at this stage of the game.

The leukemia drugs have shown some positive results but come with some rather unpleasant side effects. The positive here is that you simply stop the drug and you stop the side effects. The negative is that it is not a “cure.” It is a help. It helps people stay alive with CLL, which is a good thing. The DLI (donor lymphocyte infusion) would provide a way back to remission, but the possible GVHD side effects cannot be stopped by taking something away. It’s like a runaway train. It can possibly be managed with steroids and other drugs. But it can be a lifelong issue or it can take your life. There is no way of knowing until you get there.

Those of you who have been following me from the beginning may remember that I had a unique negative “marker” originally called 17p deletion, which is what pushed us forward with the more aggressive treatment plan early on. It appeared that the transplant remedied that issue even though my CLL returned. However, we have recently been told that it might not be a certainty because they are only looking at very small percentages of my cells. They may have just not SEEN the 17p deletion yet. ☹ With that in mind, the recommendation is to “watch and wait” until my CLL grows or until my 17p deletion pops up again. At that point, there would be no question as to what to do. It would have to be the DLI.

I was reading an article this morning about relapsed CLL treatment options and it referred to the “watch and wait” course as “watch and worry.” I completely understand! While I have determined every day to lay this at the Lord’s feet, it does require a daily decision. Some days are easier than others. This has been a rough stretch. But I know that worry will not add a day to my life. (Matthew 6:27; Luke 12:25) So we will continue as we have…to take this one day, one prayer at a time.


“Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid.”
John 14:27

Keep Believing!

The other morning, I woke up and walked into the kitchen to get my coffee and found that my favorite wooden “Believe” plaque had fallen from the wall above my pantry door and shattered into several pieces. I was really sad. I have had that piece for quite some time and it was very special to me…for several reasons.

I texted Paul and told him, and he just said “I will fix it.” I told him that it was REALLY broken, but he said that he would do his best. Later that afternoon, I got home from the store and Paul had already gotten home from work and had my “Believe” sign patched up and drying in the garage. He said that we would have to wait and see how it turned out. Because it is a curvy piece, he couldn’t just clamp it like he does other pieces he works on. He had to hold it together gently and give it time to set before he could tape it together for the final drying time. It took patience. It took time. It worked. You can see where it was broken if you look closely, but I just touched it up with a little permanent marker and it is going back up where it belongs.

God is like that with us. We have fallen. We are broken. Some of us are in pieces. We look and think that there is no hope of ever being put back together. But God is patient. He holds us gently while He works with us. Then He gives us the time we need before setting us back out where we can feel mended and useful again. There may still be a few cracks, but that’s ok. God’s permanent marker works quite well. And those cracks are a reminder of what He has brought us through.



“May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope.”
Romans 15:13

“But these are written so that you may believe that Jesus is the Christ, the Son of God, and that by believing you may have life in his name.”
John 20:31

“Let not your hearts be troubled. Believe in God; believe also in me.”
John 14:1

“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

Tough Choices

When I was a little girl, I used to love to watch the game show, Let’s Make a Deal, and the host would ask the contestant to choose between what was behind Curtain #1, Curtain #2, or what was in The Box. It was always a gamble. Sometimes they would get a car. Sometimes they would get a camel.

When I was first diagnosed, Paul and I were very confident about the direction we were going to take for my treatment. We had done the research. We knew the risks. We knew we were choosing the aggressive option, but we were confident that it was the right decision. And we were right. My doctor confirmed that just a couple weeks ago. Even though I am no longer in remission, my stem cell transplant bought me three years and apparently got my 17p deletion under control.

Now my stem cell doctor and leukemia doctor have offered three different treatment plans for consideration. Knowing us as they do, they told us to go home and research all of them and we would discuss the pros and cons next Monday at my appointment with my stem cell doctor. Mother has been going to all of my appointments with me these last months, but Paul will be going to this one as well. Paul has begun the in depth research as he always has in the past and I have started mine. We have talked at length. But so far we do not have a clear answer on this one. The risks are rough on all three. I have ruled out one because it has a tendency to lead to Richter’s syndrome, which is what led to the death of my buddy, Dave, so I simply just can’t.

The DLI (donor lymphocyte infusion) is different than the stem cell transplant in that only lymphocytes or T-cells are used…not the whole cell. Not only do they help fight infections but they are also able to recognize abnormal or cancerous cells and kill them.

The DLI is an effective treatment for minimal residual disease and to treat mixed chimerism, meaning that most of my cells are donor cells but some are still my old ones, which need to go away!

The DLI sounds like it would be the obvious choice, but it has a very high risk of GVHD (Graft versus Host Disease). There was the risk for this with the SCT as well, but not as high as the DLI because there is no chemo used in this procedure. Some GVHD is manageable. Some GVHD is life threatening. It is a lot to consider.

The leukemia drug, a targeted therapy, would simply manage it, not cure it. But the side effects are brutal. Or I could do nothing and wait until my leukemia is worse and take my chances on enjoying quality of life.

So do we take what’s behind Curtain #1, Curtain #2, or what’s in The Box? Please be praying with us. Pray for clear guidance from God. Pray for peace in whichever decision we make. We had that the first time. We are praying for that this time.


“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 25:4-5

“Let me hear Your lovingkindness in the morning; for I trust in You;
Teach me the way in which I should walk; for to You I lift up my soul.”
Psalm 143:8

“I will bless the LORD who has counseled me;
Indeed, my mind instructs me in the night.
I have set the LORD continually before me;
Because He is at my right hand, I will not be shaken.”
Psalm 16:7-8

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

May 2, 2015 - Today is my 3-Year Re-Birthday!

Three years ago today, I received my life giving cells from a postman from Massachusetts. Even though I am no longer in remission, it saved my life! The 17p deletion chromosome issue I had was something that would not respond to any treatments at the time. The SCT was the answer, and it came through!

When I was diagnosed, I had only been married to my high school sweetheart for one year. We are now about to celebrate our fifth anniversary. At that time, I only had one grandchild with one on the way. We are now about to welcome our sixth grandbaby in May. There have been a lot of changes in life. This “new normal” is real and has been difficult at times to get used to. But the alternative would not have given me this time with my family. There are no words to express my thankfulness and gratitude.

I have been able to spend more time with the Lord and in the Word than at any other time in my life. I see life differently. While there are times that I miss my fast pace past, this slower walk through life helps one not miss things that might be more important than the menial things that distract us. However, the times of aloneness because of a lowered immune system has been one of the most difficult to bear. So, I painted the house! ☺ It took several weeks of coaxing my doctors and them following my level of fatigue, but they finally agreed…using the no-fume kind. Of course, Paul was busy with me almost every evening after he got home from work. Bless his heart! He’d do anything for me. He loves me more than I deserve!

As we celebrate this day of life, we are looking at more possible procedures. My body just doesn’t seem to want to cooperate. The CAR T-Cell reduced the minimal residual disease (MRD), but did not get rid of it…did not bring about remission. So the team at MD Anderson is re-contacting my Postman to see if he would consider re-donating cells for a DLI (donor lymphocyte infusion). He was a PERFECT match, so it would be wonderful if he would give again. It’s like a mini-transplant without the chemo. I’ll keep you up to date.

But today I’m alive and choose to focus on the beauty around us. I take one day at a time and enjoy each moment…whether I’m painting our house, spending time with my sweetheart, getting to see family or friends, or alone with my God. Joy comes from within. And it has nothing to do with cancer.



The LORD is my strength and my shield; my heart trusts in him, and he helps me. My heart leaps for joy, and with my song I praise him.
Psalm 28:7

Oh give thanks to the Lord, for he is good, for his steadfast love endures forever!
Psalm 107:1

Some Days, You Just Feel Weak and Afraid

Monday began as most of other recent Mondays have, labs, a bite to eat or a cup of tea depending on the time of day, then the check-in at the Stem Cell department to get my vitals then wait to see my PA, Mary and Dr. Shah.  Same thing every week.  But we don’t always get the same results.

Compared to other folks I’ve known or known of, I have done remarkably well with both of my procedures (SCT and CAR T-Cell).  My current side effects can only be classified as annoying compared to what many people have gone through.  But persistently annoying can wear on you after a while. 

So this week, Dr. Shah decided to try eliminating a couple of my drugs for a week to see if they might be the culprits.  If so, they will switch me to a different type.  I’m game.

Then Dr. Shah sat down and got that serious look again.  You would have to know her.  She is very vivacious and high energy.  She’s a great doctor for me!  :)  She might be a bit much for low-key people.  So anyway, when she gets quiet, I know something’s up. 

She had my bone marrow results.  Here’s the good news.  When I had the stem cell transplant, it obviously completely obliterated the 17p deletion issue.   This is excellent because she told me that without those results, I would be gone by now.  So thanks be to God for getting rid of the 17p deletion problem!

The not so good news is related to my 23 chromosomes.  I have 18 normal male (from my donor) and 5 abnormal female (from me).  No snickering in the peanut gallery!  The 5 abnormal do not even form any type of pattern right now and is nothing they have seen before.  Of course, it is!  And the MRD (minimal residual disease is higher in the marrow than it was in the peripheral blood.)

They are going to do another bone marrow biopsy on May 12 to compare to this one.  If the results are the same, then Dr. Shah wants to move forward with the DLI (donor lymphocyte infusion).  I’ve mentioned this before.  No chemo, just cells, probably quite a bit of GVHD.  They would contact my previous donor and see if he would be willing to donate a second time.  Please pray in advance about this.

Many of you have been so kind to tell me that I’ve been so brave, strong, such an example.  But today I feel weak and afraid.  I still know Who holds tomorrow.  I know He has a plan.  But today I am tired and am fighting feeling alone.  I want to feel like ME again!  I want to feel light and smile and feel the sun on my face. I want to run and not grow weary.  Shoot, I want to walk around the pond once and not grow weary!  I want to enjoy my husband, spend time with my grandchildren… preferably without a mask!  

“Because of the Lord’s great love we are not consumed,

for his compassions never fail.  They are new every morning; great is your

 faithfulness.  I say to myself, ‘The Lord is my portion; therefore I will wait for him.’ 

The Lord is good to those whose hope is in him, to the one who seeks him; it is good to wait quietly for the salvation of the Lord.” 

Lamentations 3:22-26

1. I know not why God’s wondrous grace
   To me He hath made known,
   Nor why, unworthy, Christ in love
   Redeemed me for His own.
   • Refrain:
     But “I know Whom I have believed,
     And am persuaded that He is able
     To keep that which I’ve committed
     Unto Him against that day.”
2. I know not how this saving faith
   To me He did impart,
   Nor how believing in His Word
   Wrought peace within my heart.
3. I know not how the Spirit moves,
   Convincing men of sin,
   Revealing Jesus through the Word,
   Creating faith in Him.
4. I know not what of good or ill
   May be reserved for me,
   Of weary ways or golden days,
   Before His face I see.
5. I know not when my Lord may come,
   At night or noonday fair,
   Nor if I walk the vale with Him,
   Or meet Him in the air.
6. Daniel W. Whittle, Pub. 1883

What if Hope DID Come in a Box?

This past weekend, my cousin Bonnie came and retrieved the beautiful HOPE Box to pass along to yet another friend who is beginning her cancer journey.  It has become evident, that even though my hair continues to fall out daily, I’m not going to be bald.  And I have made a few hat purchases of my own along the way, so I think I’ll be fine, just a little thin.

What has been true, so far, about every one who has had the HOPE Box (a box filled with wigs, little soft comfy hats, cute hats, scarves, etc.) is that they didn’t die!  It’s about to go to #6, I believe.  That’s pretty good odds!  :)

I can say with all certainty that Hope does come in a Book!  I have spent countless hours pouring over God’s promises and what He expects from me.  It seems that I have the easier of the two jobs…well sometimes.  :)   At it’s simplest, love God, put Him first; then love your neighbor as yourself…or rather deny yourself for the good of others. 

“Love the Lord your God with all your heart and with all your soul

and with all your mind and with all your strength.’ 

The second is this: 'Love your neighbor as yourself.'

There is no commandment greater than these."

Mark 12:30-31

Then why are there days that I struggle to find hope?  I know where it is!  I know what to do!  I think not getting to hear that simple word “remission” stole a thimble full of hope from me that day.  But hope is not for the taking, it’s for the giving.  And I refuse to give it up!

I saw a young woman bound across a parking lot today much like I used to.  I haven’t bounded in a while, and I’m not quite sure when I will bound again.  It made me cry.  But I had to get myself together and realize that I was out for only the second time without a mask!  Baby steps!  Be patient. 

I’m not sure how things would be for me mentally without Facebook.  While I am thankful for the simple, easy access means of communication, it has cost us the intimate face-to-face communication of old.  I have so appreciated the prayers, the ability to update, the comments and encouragements of older and newer friends from school, church and family.  For those who have never had to isolate yourself, just know if you do, take your iPad!  But for those looking for ways to minister to people who are alone, stop by for a short visit.  They’ll love it.

As soon as I am able, I am going back to MDA to be a volunteer.  I don’t have the energy now, but every time I’m there I’m given the opportunity to share with someone and encourage him or her in some way.  I do not believe that God is going to allow this disease to go to waste.  He allows us to endure certain hardships so we can be a blessing to others.

He comforts us in all our troubles so that we can comfort others.

When they are troubled, we will be able to give them the

 same comfort God has given us.

2 Corinthians 1:4

I have spoken to you with great frankness;

I take great pride in you.  I am greatly encouraged;

in all our troubles my joy knows no bounds.

2 Corinthians 7:4

And what’s that saying about stuff always coming in 3’s?!  Sometimes it just feels so overwhelming.  Two steps forward, three steps back. 

“We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed;”

2 Corinthians 4:8-9

“In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, so that the tested genuineness of your faith—more precious than gold that perishes though it is tested by fire—may be found to result in praise and glory and honor at the revelation of Jesus Christ. Though you have not seen him, you love him. Though you do not now see him, you believe in him and rejoice with joy that is inexpressible and filled with glory, obtaining the outcome of your faith, the salvation of your souls.”

1 Peter 1:6-9

And my God will supply every need of yours according to his

riches in glory in Christ Jesus.

Phillippians 4:19

What’s in your box?

Some News Takes a Day or So to Process…..

It was a Monday like most every Monday…packed up and ready for my day at MDA.  Though today was slated to be fairly short; just labs and a quick visit with Dr. Shah.   The labs went smoothly this week (I asked for the smaller needles up front).  No bathroom falls!  :)  I even lost a couple pounds.  (Note to self:  no need to pack on extra weight for a T-Cell trial…just a stem cell transplant!) 

When PA Mary and Dr. Shah went over my numbers, they weren’t bad at all.  Many were still a little low; some have inched into the low normal range.  Some were perfect!  This is very encouraging, especially because these were after the neupogen had worn off.  I even got permission to “carefully” see my grandchildren.

Their big concern continues to be this crazy Phantom Itch that I especially get at night.  They have consulted with others and I seem to be unique…of course.  She offered more sleeping pills which I declined, more doctor consults which I also passed on for now.  Paul and I really think that, after reading about all the meds I’m taking, I’m having a reaction to at least one of them.  I’ll survive until they get me off these meds.  If I still have it then, then we’ll see.  As far as the joint pain, it comes and goes, but it’s better than it was.  Hurray for those shots!  Then there’s the fatigue.  Whatever!  That’s what the couch is for!

Then came the drum roll.  I’ve seen this look before.  As much as I love my mother and appreciate her taking me to my appointments, I knew right then that I needed Paul. 

She handed me my Bone Marrow Diagnosis.  For those of you who tire of my techno mumbo jumbo it reads “bla bla bla, bla bla bla….”  SHE STILL HAS RESIDUAL CLL.  The good news is that it has been reduced to the VERY SMALLEST amount.  I couldn’t help but cry then, and honestly and can’t help but cry now.  We were really hoping and praying for remission.

BUT, it’s only been a month.  No one seems to be able to give a definitive answer as to how long the T-Cell fighters stay in there fighting.  If they’re still fighting, then perhaps next month’s bone marrow biopsy may have a different diagnosis.

Or perhaps this is just were God wants us.  Maybe we get just a little too comfortable when I’m in remission.  Perhaps that small percentage of CLL enhances our reliance on Him.  It shouldn’t.  But I’m pretty sure is does. 

In my devotion today, Jesus Calling, it says “At the end of your life-path is an entrance to heaven.  Only I know when you will reach that destination, but I am preparing you for it each step of the way.  The absolute certainty of your heavenly home gives you Peace and Joy, to help you along your journey.  You know that you will reach your home in My perfect timing, not one moment too soon or too late.  Let the hope of heaven encourage you, as you walk along the path of Life with Me.”

This hope we have as an anchor of the soul, 

a hope both sure and steadfast and one which enters within the veil.”

Hebrews 6:19

For Everyone Who Has Had a Bad Day…There is Hope!

One thing that is true about MD Anderson is that not all days end up as they originally were scheduled.  In fact, that happens quite frequently.  You just learn to go with the flow.  It’s best, however, to remember to put a protein bar or your favorite snack in your tote bag.  I forgot yesterday.

My original schedule was going to be quite simple.  11:30 labs.  Go get lunch.  1:30 BMB (more on that later).  2:30 Dr. Shah.  It takes about two hours for labs to be processed, so this schedule was going to allow plenty of time for the labs to get to the BMB folks and to Dr. Shah. 

Well, that would be too easy.  I got a phone call from Dr. Shah’s office while I was waiting at the lab asking me to come straight to their office once I was done.  OK… the labs won’t be ready, but it’s not my call.  The wait had been especially long because it was a Monday.  Always long on Monday.  Then since they took my PICC line out, they have to use my actual veins again.  I have really small, wiggly veins that often do not want to cooperate.  Today was one of those days.  After trying very diligently once, then trying the little hot hand packs, she wrapped my arms in hot towels and left me there to bake for a while.  Finally, just when she was about to think that the second stick wasn’t going to work either, it took.  Fifteen vials and we were good to go.  They are a patient, loving team up on the 8^th floor!

So around the corner, I check in at Stem Cell.  I get my paperwork but need to go to the bathroom before getting my vitals.  I don’t know what happened, if I was just tired or tripped up or what, but I fell in the bathroom.  No one was in there to help, so I just got myself together and got back in line for my vitals.  My mom saw that I was upset.  My BP was 140/103…yes that is high for me!  They kept asking to get me a wheelchair or take me to the ER….  I was fine.  I just hurt my bum and knocked the wind out of myself, which I don’t have a lot to spare these days.  They got me to my exam room and the PA came in who was much more calm.  However, she asked me how long I had had the runny nose, and I said since I fell in the bathroom and it made me cry!  Doctors really don’t always think of the obvious! 

Only a few of my numbers had come back yet, but they were up from last week.  Of course, I had expected them to be up because of the neupogen shot.  My interest will be next week’s counts when I haven’t had a neupogen shot.  She said that because of the number of weeks out from receiving the T-Cells, my body should start to begin to find its way back to normal.  It is difficult to compare because of the variety of cell numbers given to the variety of trial members.  So we wait.

Some of the blood taken today was to do the flow cytometry test, which is the big test that takes a long time to get the results that can detect residual levels of disease and identify disease relapse.  It also assesses my donor chimerism…percentage.  So it will be exciting to hear that news.

Dr. Shah also let me get off my Levaquin, the anti-bacterial drug.  These are all very potent drugs, so to be able to get off of them a little at a time is a good thing.

So after determining that I had indeed not injured myself, she decided on more blood work for Tuesday out at MDA The Woodlands to check for a wide variety of possible viruses and also do a workup on my thyroid to try and figure out why my fatigue is getting worse instead of better.  Hurray for The Woodlands!  They use really small needles!

That led us to our final appointment on Monday.  Bone Marrow Biopsy.  Actually, it was downgraded to Bone Marrow Aspiration.  I have NEVER only had an aspiration, so I chalked this one up to making up for falling in the bathroom.  For those who may not know the difference between the two, or may not know what it is at all… A bone marrow biopsy removes a small amount of bone and a small amount of fluid and cells from inside the bone (bone marrow).  A bone marrow aspiration removes only the marrow.  The process starts the same in that you get a deadening shot (ow!) in your backside, but I can attest now having had them both, the biopsy is much more intense!  No need to put it on your bucket list if you don’t need to.  However, my backside is still indeed sore today.  Neither is a walk in the park!!

Thankfully, mother drove back to her house where we finally ate and I took a nap before driving the rest of the way home.  No one would have wanted me on the road that afternoon!

So even on rough days, there is hope.  We wait expectantly for news from these tests.  We wait expectantly that tomorrow there will be more strength.  We wait expectantly to hear the words “remission”! 

  

In the morning, LORD, you hear my voice;

 in the morning I lay my requests before you and wait expectantly.

Psalm 5:3

For I hope in You, O LORD; You will answer, O Lord my God.

Psalm 38:15

There’s Hope in that Shot!

UPDATE:  To Creekside Church, Spring, and all my praying friends and family, thank you for your continued prayers on our behalf.  All day Monday and half of Tuesday were spent at MDA trying to figure out where we are and how to cope with the current on-going side effects.  My numbers are still "in the tank," lower than last week's actually, so I am still quite immunocompromised.  (I have been asked to explain some of my technical terms, so for this first one, it simply means that I basically have no immune system and am highly susceptible to infection.)  So they gave me another neupogen shot that will help boost my WBC (white blood count).  The neupogen usually causes long bone pain but it will just get lost in the shuffle this go around! 

Dr. Shah was very concerned about the severity of my joint pain and the resulting lack of function.  The Car T-Cell trial requests that no steroids be used.  Dr. Shah is more concerned about me than the trial, but I encouraged her to try to stay within the parameters.  She asked them if a steroid injection would qualify since it is not systemic (is not ingested into my system). They said yes.  So she sent me off to have my PICC line removed (an intravenous access central catheter that can be used for a prolonged period of time for blood products, chemo, nutrition, antibiotics….), :) and for knee x-rays to finish the day Monday.

I started Tuesday with the oncologist orthopaedist.  After a consult, he gave me the good news that the x-rays did not show any arthritis, so the inflammation is just from the T-Cell activity.  He did decide to do the steroid injections in both knees.  He hoped that I would see some relief within the next few days.  For now, I walk kind of like Tim Conway (playing the old guy) on the Carol Burnett show.  :)

I got some other good news!!!  I get to re-introduce thick skin fruits (that we purchase, wash, and eat at home) into my diet. So just before running off the road for the fourth time, (I don't think I should drive myself to any more appointments for a while), I stopped and bought banana and watermelon!  Hurray!!!!  Plus, Dr. Shah said we could take a short trip to the country, covered appropriately AND I could attend Easter Services on Sunday IF I wear my mask, sit in the back, and don't touch anyone!  Oh, Creekside, you know that I want to hug you all, but that will have to wait.  Please just see the smile in my eyes and know that I am hugging you from the inside.  

On a side note, my hair started falling out one week ago, exactly three weeks from the start of chemo.  Right on track.  It is not coming out in clumps as is typical for those who lose all their hair.  It is coming out all over in MULTIPLE strands, filling the sink like it did before.  So I will probably just end up with really thin hair like I did last time.  Not sure which I prefer. But I will be content with what I have.  I do have a lot of hair to work with, so it takes a while before other people notice.  It’ll grow back.  It’s just hair. 

As far as prayer requests, please pray that the phantom itch stays away, that the steroid shot to my knees proves beneficial, that all the other joints that couldn't get a shot will be managed by my meds, that those killer T-Cells are in there doing their job, for my counts to come up which will positively effect my stamina and endurance which are currently minimal.  Thank you all!!  Cyber hugs!

“Now to Him who is able to do far more abundantly beyond all that we ask or think, according to the power that works within us, to Him be the glory in the church and in Christ Jesus to all generations forever and ever. Amen.”

Ephesians 3:20-21

Good News, Bad News

I went back to the doctor on Monday hoping for some answers to the latest set of side effects I was experiencing.  For several days, my joints had begun to ache to the point that I barely had the strength to get up and down.  It was the worst in my knees, then ankles and feet; but my shoulders and elbows hurt as well.  It was very discouraging.  I couldn’t imagine how it had gotten so bad so quickly.

I described the pain to the PA who seemed a bit at a loss, but as soon as Dr. Shah came in, she seemed to know just what it was. The T-Cells are busy at work seeking and destroying the cancer cells!  And in doing so, they emit a protein that causes inflammation in my body and makes me feel like crud.  So the good news is that the T-Cells are working hard.  The bad news is that it makes me feel lousy.  It should not be permanent.  Thank goodness.  In the meantime, the doctor decided to break her cardinal rule and give me NSAIDs (which she doesn’t normally do to avoid any risk against my liver and kidneys), but I am going to take 2 Ibuprofen 3x/day to help with the inflammation.  Steroids are not an option on this trial.  She is also switching one of my antihistimines to see if it will better help fight the invisible itch without bring back my undeterminable rash.  :/

As always, she was very encouraging.  I was worried that I had done something wrong…allowed myself to get weak.  She just hugged me and assured me that I had not done anything wrong.  Just listen to your body and rest when you need to rest.  We’ll get through this together, just like last time.

And just like last time, we will take this one step, one day, one prayer at a time.