June 15, 2015

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

June 12, 2015

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

June 2, 2015

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.

May 19, 2015

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

May 14, 2015

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

May 13, 2015

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

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