August 29, 2019

2019, August 29 – Are You Going to Die Today?

Today marks eight years since my leukemia diagnosis! The details of that day will be forever etched in my memory. But that’s not really what I wanted to talk about today. I’ve had this in my head and heart for some time but just haven’t taken the time to sit and write in down. I thought today would be a good day.

Other than my granddaughter, Dana, who is twelve, my other five grandchildren have no memory of me not having cancer. The only one that might have minimal recollection is Caleb, and he’s only nine. He was only one and a half when I was diagnosed. Ethan had just been born, and Jonah, Lily, and Elias were yet to be. So their whole lives have been accustomed to hearing that Tadee can’t do that or we can’t go see Tadee right now or Tadee isn’t strong enough to pick you up right now or playing peek-a-boo behind my mask. The first time we thought I was going to lose my hair, Dana and I played dress up with my wigs to help her feel more comfortable with the idea that “it’s just hair.” Every time I have gone into the hospital, the kids have come over for a special time together and a picture because I just don’t know when it’s going to be my time not to come home from the hospital.

But the thing that has gripped me the most is the innocent way they have embraced the reality of my situation. Especially Jonah. Last summer was really rough. I was in the hospital for almost six weeks, and it was pretty touch and go there for a while. It was scary to say the least. My grandchildren would FaceTime me, when I was able to, and it has been such a blessing over these years to still be able to communicate with them even when I wasn’t able to be with them in person due to my weakened immune system. But Jonah would always ask, whether on FaceTime or on the phone, “Tadee, are you going to die today?” And I would simply respond with a smile, “No. Not today, buddy.” And then he would ask the same thing the next time and the next. And my answer was always the same. No, not today, buddy.

Well, a year has passed and I am much more stable. Jonah hasn’t asked me that question in a while. But I know that it is only a matter of time that it will once again become part of my and their reality. Right now, Tadee can keep up a little better, not wear a mask except in the yard, and I can even pick a few of them up. I am thankful for every day God has gifted me. Eight years ago, we never expected that I would still be here. Hoped, prayed…yes. Expected…only with God. Now that I’ve gotten this far, our hope has expanded. But we still just take one day at a time.

And no, Jonah, I don’t think I’m going to die today. <3

December 13, 2018

Navigating our Journey

Earlier this week, I met with my leukemia doctor to go over the various treatment protocols that he presented to me last month. Paul and I had narrowed them down to two, one Standard of Care and one Clinical Trial. Based on how my various “counts” had been heading, Dr. W. and we were all prepared to start treatment sooner than later. And as it turned out, the two we had chosen were on the top of his list as well, especially the trial. However, it isn’t open for 2-3 more months.

But as we took a look at my labs this week, we were surprised to see that they had backed up a bit in each of the areas of importance. Just enough to buy me a little more time and be considered “stable” for the moment. Nothing ever seems to stay that way for long, but the timing was helpful, as I cannot move forward with either of the leukemia treatments until my lungs are clear. The medicine that I am taking for the fungal infection in my lungs counteracts with the main ingredient in both protocols…Venetoclax. So until my lungs are clear and I can get off of Noxafil, the prayer is that this sudden stable reading in my counts might hold strong.

While we were researching the various treatment plans, a sentence seemed to scream out and remind me of the reality of my disease.

“Relapsed or refractory chronic lymphocytic leukemia remains
incurable, despite advances in treatment over the past 5 years.”

Well, that about wraps it up! It went on to say that we (I) have increasingly developed resistance to therapies. (ie…a stem cell transplant that wore off, 2 DLI’s that didn’t work, 2 CAR T-Cells that didn’t work….) “Hence, additional treatments that have alternative mechanisms of action that are effective and have an acceptable side-effect profile are needed.” Thus, the introduction of a variety of monotherapies and targeted therapies. I realize that this is usually where I lose some of you, but many want to know the details.

The Standard of Care option is Venetoclax plus Rituximab. It is showing a 85% 2-year progression-free survival rate, with 17p del patients at 81.5%. Not bad!

The Clinical Trial option is Acalabrutinib/Venetoclax/Obinutuzumab. This is the one that Dr. W. is leaning toward but doesn’t open for a couple months. If my lungs take that long to clear, it might end up being the best option. Acalabrutinib is a newer version of Ibrutinib with supposedly fewer side effects, at least from what has been documented so far. The cool thing about this one is that after it has cycled, the A/V portion can be restarted again if necessary. That is not the case in most trials.

Both options have an extensive list of side effects such as neutropenia, low counts, nausea, diarrhea, rash…all the regular stuff. But I’ve been there, done that, have the t-shirt. The goal is to be here next Christmas and hopefully the one after that! My brother wants me to dance at his 50th wedding anniversary!! I’ll be happy to make our 10th then prayerfully our 15th!!! I am already defying the odds of my disease. I would really like to just blow this whole thing out of the water!! ☺ Only God!

My infectious disease doctor is doing another CT of my lungs on January 2 to check the status of the fungal infection. The problem is that they have no idea what it actually is or how I got it. I/we have been so incredibly careful and protective of where I go and what I do and I STILL got it! :/

So with joy and peace for each day, we will journey on, step by step. I wish each of you the Gift of knowing the One who is the giver of that joy and peace at Christmas and throughout the year.

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

October 15, 2018

When Saints Pray

(I wrote this while still in the hospital. I’m just now getting to publish it.)

The night after seeing our blessed news of “No Richters,” I laid in bed and thought about all the folks who had been praying for me and then imagined what that must have looked and sounded like in heaven.

I could hear a choir of voices rising together, some in unison, some in harmony, echoing through the Throne Room of God. A choir of voices that could not be missed or dismissed. Beautiful yet determined; hopeful yet believing, confident yet respectful. This song of prayer being sung from the hearts of my loved ones, near and far. Your song touched the Heart of God and saved my life! Do you truly understand the power of corporate prayer?

“This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us.”
1 John 5:14

“Then you will call on me and come and pray to me, and I will listen to you.”
Jeremiah 29:12

“And the prayer of faith will save the one who is sick,
and the Lord will raise him up.”
James 5:15

“Again I say to you, if two of you agree on earth about anything they ask,
it will be done for them by my Father in heaven.”
Matthew 18:19

“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.
Philippians 4:6

“Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.”
Hebrews 4:16

“In my distress I called to the Lord;
I cried to my God for help.
From his temple he heard my voice;
my cry came before him, into his ears.”
Psalm 18:6

“And I will do whatever you ask in my name,
so that the Father may be glorified in the Son.”
John 14:13

Thank you for praying me back.

September 4, 2018

I’m the Happiest Girl in the Whole USA

“Shine on me sunshine
Walk with me world, it's a skippidy doo da day
I'm the happiest girl in the whole U.S.A.
Good morning, mornin', hello sunshine
Wake up, sleepy head
Why'd you move that bojangle clock
So far away from the bed?
Just one more minute that's why we moved it
One more hug or two
Do you love wakin' up next to me
As much as I love wakin' up next to you?
You make the coffee, I'll make the bed
I'll fix your lunch, and you'll fix mine!
Now tell me the truth do these old shoes look funny?
Honey, it's almost nine
Now you be careful, got to go
"I love you, have a beautiful day!"
And kiss the happiest girl in the whole U.S.A.
Skippidy doo da thank you Lord for makin' him for me
And thank you for letting life turn out the way
That I always thought it could be
There once was a time, that I could not imagine
How it would feel to say
I'm the happiest girl in the whole U.S.A.
Now shine on me sunshine
Walk with me world, it's a skippidy doo da day
I'm the happiest girl in the whole U.S.A.”

…Donna Fargo

Besides my favorite hymns, I cannot get this song out of my head. It might seem unusual given my current circumstances, but I just keep getting happier and happier. I am reminded of a sweet man from our church that passed away a few years ago from cancer. A few months before he went home to be with the Lord, he woke up one morning exclaiming that JOY had descended upon him! And he experienced and exuded complete joy and happiness for the rest of his days. He was a total delight. Of course, he always was…but God gave him an extra measure.

That is how I feel. Every experience is wonderful. From my morning cup of coffee to the mid-night cuddle with my sweetheart when I can’t sleep. The upset nerve endings on my scalp are a bit much, but other than that everything is coming up roses!

When I posted that I was unable to drive for the time being, several friends lovingly offered up their services. I am humbled and grateful. Needs are being met one by one. God is good…all the time. One just has to ask, and sometimes look for it.

I am so incredibly thankful for the relationship I have with my husband and with our kids. It has not always been easy, but I can say with all assurance that it is worth it. I am thankful for where we are, how far we’ve come, and who we are becoming as a family.

We sorted through tons of paperwork this weekend looking for certain things, tossing and filing others. It was very cleansing. In the process, we found the research paperwork from when I was first diagnosed. That was not something we could throw away. It held too much history for us. But as we read through many of our highlighted excerpts, we realized again that I am a miraculous anomaly. Only God could have gotten me this far. And yet we continue to ask expectantly, thankfully, for more years, more time, more joy.

But no matter what the outcome, today is beautiful. My life is full. My family and friends are amazing. And I am the happiest girl in the whole USA.

August 29, 2018

Seven Years and Counting!

Today marks seven years since that fateful day in 2011 when my future was forever changed, or at least revealed. Cancer does that to you. Whether you are a survivor, an ongoing fighter, a caregiver, or the family left behind, you will never be the same. While this was not a shock to God, it most certainly was to us! I will never forget one minute of that day. I can still envision the moments in the waiting room, the doctor’s words/voice/tone, his simple “I’m so sorry…,” the stack of papers that I left with, my call to my mom/to Paul, pouring over those papers with him at a Chinese buffet, and sitting at this very computer a hour later when he walked through the door announcing that THIS is where he needed to be. That was when it hit me. I had cancer.

Fast forward seven years, one stem cell transplant, two CAR T-Cell trials, two donor lymphocyte infusions, one parathyroidectomy, one knee replacement, a jillion trips to MDA, and a partridge in a pear tree later and I still have cancer with all the trimmings. But I’m still here!!! I have outlived a business partner and a dear church friend. Survival guilt is a real thing. Many of you may wonder why I push myself the way I do to see my friends and family. It’s simple. I really have no idea how long I have left. None of us do, to be honest. Maybe a year. Maybe ten. All our days are numbered. I simply choose to make mine count as much as possible. No worries. No fussing. Just love of God, family, friends, and this beautiful world He has given us. It’s really pretty simple.

“Teacher, which is the greatest commandment in the Law?”
Jesus replied: “‘Love the Lord your God with all your heart and with all your soul and with all your mind.’ This is the first and greatest commandment.
And the second is like it: ‘Love your neighbor as yourself.’
All the Law and the Prophets hang on these two commandments.”
Matthew 22:36-40

“Let the heavens rejoice, let the earth be glad;
let the sea resound, and all that is in it.
Let the fields be jubilant, and everything in them;
let all the trees of the forest sing for joy.”
Psalm 96:11-12

Life is good. And I am thankful.

August 10, 2018

It Hit Me Last Night

We have been SO busy making the most of every moment, taking care of mom, and just trying to keep up with all that is going on with those closest to us that the gravity of what I am about to embark on didn’t really hit me until last night. I have been teasing that I am going on a three-week vacation to MD Anderson! And maybe next time I’ll choose someplace like Cabo!!

The fact of the matter is this is a bigger deal than I may have intimated. And the fact that I “look so good” doesn’t help folks from thinking that I’m really ok and that this is probably not that serious. I have been very fortunate to be able to maintain my non-sickly appearance, but I truly believe it has a great deal to do with attitude. The Lord has been gracious to me and given me the ability to not worry…at least not about this. ☺ Worry doesn’t add a moment to our life…really only takes away.

The part that hit me last night was not being sick from the chemo or whether or not the cells will buy back my remission, it was the fact that I will not get to sleep next to my Paul for three weeks. :/ That is by far the hardest part. It was the first time I have cried about any of this. But I guess it’s a payoff. Hopefully, prayerfully, these three weeks will buy us many more years of time together. So we sacrifice three weeks for three years and hopefully more…lots more!

Yesterday, I was talking with my dear friend about trials and how some folks have a skewed view of them and their purpose in our lives. We have mistakenly thought that trials are given to us to make us stronger, but that often creates a dependence on self rather than the Lord…an “I’ve got this” mentality. Perhaps our trials should drive us to lean more on the Lord, into The Word, into His Arms, under His Wing… time spent with Him, even in our heart, mind, and prayer. When we lean on Him, our confidence and trust is through Him, and that is what makes us stronger.

So as we each walk our own journey, let us lean on our Saviour.

“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

July 9, 2018

We Are Not Consumed!

In the past weeks and months, we have learned of at least two other dear friends who have been diagnosed with the dreaded Cancer and other illnesses. We have heard of folks who have lost loved ones. We have again endured more hope followed by shattered dreams in the work place. We have watched loved ones walk difficult relationship roads. We watch families continue to rebuild almost a year post Harvey. And I am preparing once again to enter MDA for a three-week trial in hope of once again of reaching remission. Life is just hard sometimes.

This morning, my reading took me to Lamentations 3 where Jeremiah is lamenting his and his nation’s afflictions. It sounds worse than anything any of us have been going through here, but, of course, I guess it’s all relative.

“I am the man who has seen affliction by the rod of the LORD’s wrath.
He has driven me away and made me walk in darkness rather than light;
indeed, he has turned his hand against me again and again, all day long.
He has made my skin and my flesh grow old and has broken my bones.
He has besieged me and surrounded me with bitterness and hardship.
He has made me dwell in darkness like those long dead.
He has walled me in so I cannot escape; he has weighed me down with chains.
Even when I call out or cry for help, he shuts out my prayer.
He has barred my way with blocks of stone; he has made my paths crooked.
Like a bear lying in wait, like a lion in hiding,
he dragged me from the path and mangled me and left me without help.
He drew his bow and made me the target for his arrows.
He pierced my heart with arrows from his quiver.
I became the laughingstock of all my people; they mock me in song all day long.
He has filled me with bitter herbs and given me gall to drink.
He has broken my teeth with gravel; he has trampled me in the dust.
I have been deprived of peace; I have forgotten what prosperity is.
So I say, “My splendor is gone and all that I had hoped from the LORD.”
I remember my affliction and my wandering, the bitterness and the gall.
I well remember them, and my soul is downcast within me.”

Lamentations 3:1-20

How many times have we felt like Jeremiah? I remember when Isaiah felt very much like this. When David did. When I did. When those close to me have. But God!

“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 3:21-26

I do have to say that the rest of the chapter continues with more suffering but also with the faithfulness and compassion of God. So what should we do?

“And be not conformed to this world: but be transformed by the renewing of your mind, that you may prove what is that good, and acceptable, and perfect, will of God.”
Romans 12:2

“Be anxious for nothing; but in everything by prayer and supplication with thanksgiving let your requests be made known unto God. And the peace of God, which passes all understanding, shall keep your hearts and minds through Christ Jesus.”
Philippians 4:6-7

“Cast your cares on the LORD and he will sustain you;
he will never let the righteous be shaken.”
Psalm 55:22

“Let the peace of Christ rule in your hearts,
since as members of one body you were called to peace. And be thankful.”

Colossians 3:15

Let your light shine bright!

“Light dawns in the darkness for the upright; he is gracious, merciful, and righteous.”
Psalm 112:4

“For it is you who light my lamp; the Lord my God lightens my darkness.”
Psalm 18:28

“The Lord is my light and my salvation; whom shall I fear?
The Lord is the stronghold of my life; of whom shall I be afraid?”
Psalm 27:1

“For at one time you were darkness, but now you are light in the Lord.
Walk as children of light.”

Ephesians 5:8

“You came near when I called you, and you said, “Do not fear.”
Lamentations 3:57

Praying for His Light to light up your darkness, show you the way, or just be a beacon on the hill to give you encouragement.