Preparing For What You Cannot Plan

That was the title of Sunday’s message.  You know when you hear a sermon and are convinced that God meant it just for you?  I’m sure that Pastor Dean Wood, of Creekside Church, had other things in mind when he prepared this message than what it would mean to this cancer patient.  But God works that way, you know.

In the first two chapters of the book of Ezra, the Israelites are in captivity in a foreign land.  Despite their situation, Ezra maintains appropriate counts and records for the many areas of service.  There is a list of gatekeepers, even though there are no gates…or even walls!  He listed the choir members though there was no place to sing.  He maintained the count of temple servants even though their temple lay in ruins back in their homeland.  Ezra made sure that no matter the circumstances, Israel was prepared and ready when God’s plan took them home.

In the book of Acts, Jesus asked the apostles to not leave Jerusalem but to wait for the baptism of the Holy Spirit.  They didn’t know the when or the how, but their Christ asked them to be ready.  Peter could have never planned that 3,000 people would be saved on the day of Pentacost, but he could be prepared.  That is what Christ asks of us.  Be prepared.  Be ready.

In the last couple months, Paul and I have read and researched in order to be prepared to partner with my doctors in determining the best course of treatment.  Yesterday, we had that opportunity but with somewhat frustrating results.  First, we learned that my brother was not a match…only a half match, which makes for a very risky transplant.  Second, we learned that all their previous “younger” CLL patients with 17p deletion declined the transplant after first remission because they had felt better.  My doctors were elated to hear that we had studied enough to know that was a foolish choice.  Third, we all decided against the Ofatumumab trial because it is not a CLL treatment, rather it is a monochlonal antibody biological therapy designed to postpone treatment by limiting disease progression, to buy older folks or people too scared to move forward with the transplant more time.  That’s not our goal.  Next we were reminded that I am not “2.5 kids and a dog!”  That is to say that my situation is not common and there is no standard protocol. 

So what does this all mean?  We continue to wait.  We wait until the MUD Coordinator (Matched Unrelated Donor) finds a match and goes through the procedure of confirming that person’s willingness and availability to donate.  At that point, we would move forward with either FCR or Campath for the front line treatment and then directly to the transplant. 

And we continue to prepare.  Prepare physically by getting the necessary rest, avoiding germs and illness, strengthening my body through nutrition, exercise, etc.  Prepare mentally by staying educated and informed.  Prepare emotionally by understanding and accepting that taking a year or more out of my life can hopefully buy back the next twenty plus years.  Prepare spiritually by staying close to my Lord, in His Word, and on my knees.  Prepare financially by wise stewardship of what He has provided and continuing to work as much as possible within my limitations.  Prepare socially by enjoying my family and friends and spending as much time together as possible before that element becomes restricted. 

We don’t always know the plan.  But we can be prepared.

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

Lord prepare me to be a sanctuary
Pure and Holy, Tried and True 
And With Thanks Giving
I'll be a living 
Sanctuary, Lord for you

“The Jerk”

How many of you have seen Steve Martin’s memorable, hysterical, most quotable comedy, “The Jerk?”  OK, you may be wondering why this of all things has jumped into my head as something to share in my blog.  Well, remember when Steve Martin’s character, Navin R. Johnson, first sees his name in the phone book?

 

Navin R. Johnson:  “The new phone book's here!  The new phone book's here! 
Page 73 - Johnson, Navin R.!  I'm somebody now!  Millions of people look at this book everyday!  This is the kind of spontaneous publicity - your name in print - that makes people.  I'm in print!  Things are going to start happening to me now.”

 

Well, MD Anderson has something just about as cool.  MyMDAnderson.org.  I just log in with my patient ID number and password and there before me is everything I need to know about me and my treatment at MD Anderson.  It has all my personal information, blood type, test results, my team of doctors and nurses, support personnel and information, educational material, and my appointment schedule…complete with directions, including floor and elevator bay!  I AM somebody now…at least at MD Anderson!  :) 

This was very helpful today because when I logged in this morning I saw that the good doctor had already contacted the folks at MD Anderson about the possibility of scheduling a CT Scan.  (I learned that CAT scan and CT scan are one in the same.)  However, my two teams (transplant and CLL) BOTH ordered the same tests, so I had them scheduled for this Friday and for next Tuesday.  A couple phone calls and an email to my patient advocate got everything worked out.  I also learned that the reason we haven’t gotten the results back on my and Ron’s HLA typing was because my insurance company has not communicated back with the business center at MD Anderson to give approval.  So if anyone would like a specific prayer request, please pray that the insurance company would move forward in a timely manner and contact MDA with its approval. 

Now again, it may seem unusual to find correlation between “The Jerk” and my current situation, but I have always heard that laughter is the best medicine.  So I need to find humor where I can. 

Navin R. Johnson:  “I don't need anything. Except this ashtray.  Just this ashtray...and this paddle game.  The ashtray and the paddle game and that's all I need.  And this remote control.  The ashtray, the paddle game, and the remote control, and that's all I need.  And these matches.  The ashtray, and these matches, and the remote control, and the paddle ball...and this lamp.  The ashtray, this paddle game, and the remote control, and the lamp, and that's all I need.  I don't need one other thing, not one... I need this.  The paddle game, and the chair, and the remote control, and the matches for sure.  And this. That's all I need.  The ashtray, the remote control, the paddle game, and this magazine, and the chair.  And I don't need one other thing, except my dog.”

I’ve got all I need too.  I have the love and support of my sweet husband, my kids, family, and friends.  I have the knowledge that God is in control and loves me too.  And I have confidence in a great team of doctors. 

I am somebody.  And I’ve got all I need.

Rollercoaster Rides

After a weekend of purposefully trying not to worry, we head back to the good doctor’s office this morning expecting a look of concern and the needle biopsy.  Mondays must be the main chemo day because the same sweet folks with little hats and good attitudes were there again.  Or rather, I was back on their day. 

It’s a longer wait on Monday mornings, but I read an excellent article about Texas A&M and t.u. and the coming change in the one hundred plus year rival tradition.  Finally, it was my turn for my regular finger prick, vitals check, and to see the good doctor.  He came in as positive as always, copies of reports in hand, and explained the results from Friday’s ultrasound.  Yes, the lymph gland is enlarged.  We expected that.  Yes, there are some additional abnormal nodes, but this is also not unusual for the disease.  No, there is no need to do a needle biopsy.  We already know that you have cancer!  We’re not going to order unnecessary tests, risk unnecessary exposure, and spend unnecessary money.  Radiologists tend to be…a bit over zealous.  Tests are what they do.  And in as short a time as we were alarmed, we were granted the gift of relaxing just a bit.  How many more twists and turns is this CLL rollercoaster going to have?  Quite a few, I suppose.

The rest of the visit was spent discussing the various front line treatment options, a couple clinical trials, and what we all thought (with our vast two months of knowledge) would be the best option.  Remarkably, we all agree.  But as was originally planned, we will wait for Dr. O’Brien, the MD Anderson expert, to make the final call.  Our good doctor has already had me pre-screened for the trials and is going to give the PA a heads up about my lymph nodes and ask about a CAT scan.  No need to do one now when MD Anderson would just do it again.

So we will stand in line until next Monday when we board our rollercoaster car, buckle up, and head upwards with the sound of gears beneath us, and look forward to the exhilarating ride before us.  Think I’ll take a Dramamine.  :)

Sunsets and the Great Unknown

On the last leg of our latest trip to Oletha, my mind wandered back to the events of the week.  But the details faded into the background as I took in the scene before me.  The sun had just dipped below the horizon, burning the sky with a deep red-orange glow fading upward to dusky twilight blue with the slightest sliver fingernail moon already low in the western sky.  Is there anything other than this moment?

The good doctor has reminded me at the end of each visit to call the office if anything ever changed.  Fever, chills, swollen lymph glands….  Nothing had…until last Wednesday evening. 

I was still tired from the Light the Night walk so Mother and Mac had come to our house for dinner and cards.  I made the best slow-cooker roast ever, and Mac and I had walked away with that week’s card game.  As I was getting ready for bed, I noticed swollen, painful lymph glands under my left arm.  It seemed unusual for it to have appeared so suddenly.  Just six days prior, the good doctor had checked my glands and found nothing unusual.  We crawled into bed a bit concerned.

The next morning, I phoned the doctor’s office to inform them of the change.  After speaking with the good doctor, his nurse scheduled an ultrasound for Friday and a follow-up appointment for the next Monday morning.  I planned on going to the ultrasound on my own.  Paul has already missed work for the other appointments and I didn’t think this would be a big deal.  But my sweetheart was home by noon to get me to my 1 o’clock appointment.  How does he always know when I’m going to need him?

Sometimes the staff allows Paul back for my tests.  Other times they don’t.  This was one of those times.  I prepared for the simple test but could quickly tell that the ultrasound technician saw more than she expected.  She asked me to wait while she went to consult with the radiologist.  This was not normal procedure.  She came back in and asked me to get dressed and go wait with my husband.  The doctor came out shortly and visited with us about what he saw.  We didn’t really understand much except that the lymph node was about 2.5 cm and that there were some other “abnormal” nodes.  He had a call placed to my doctor and was suggesting a needle biopsy. 

We were more than a little shaken.  Swollen lymph glands were an expected progression.  But when a doctor uses the words “abnormal” and “needle biopsy” on someone who already has cancer, it can be quite disconcerting.  So we headed around the corner to the good doctor’s office and spoke with the nurse to let her know of the latest development so she could expedite the information.  “I’d like to tell you to have a good weekend, but I know you probably won’t.  Try not to worry.  We’ll see you Monday and get the biopsy ordered.”

So we continued with our plans, picked up a few groceries, the youngest from school, and headed north.  How many more times will we get to do this before the treatments start?  Will I be able or allowed to make this trip once it does?

After we unpack and join our friends on the deck to share thoughts and a glass of wine, I watch as the burnt orange fades to ink blue, dotted with thousands of stars.  The cool, clear night releases what the summer’s heat hides.

The wine and the World Series both come to an end, and we call it another day.  I love it here.  But honestly, I love wherever we are.  I pray that Monday brings answers.  Answers that bring countless more sunsets, ball games, and glasses of wine shared with the ones I love.

Walk This Way

Last night was the Texas Gulf Coast Chapter’s LLS Light the Night Walk in Market Street in The Woodlands.  Hundreds, thousands joined together to walk in support or in memory of those whose lives have been touched by leukemia or lymphoma and to raise the much needed research funds and awareness.  A record breaking $1 million+ was raised between the two Houston-area walks.

Along the designated route were volunteers who waved directional signs stating “Walk This Way.”  I couldn’t help but sing Aerosmith’s famous anthem of the same name.  Alongside me were family and friends who came to walk, to support, to encourage.  For all, it was a sacrifice of time.  For others, it was shear determination.  The women in my family all seem to have one autoimmune disorder or another.  It was another trait besides being “tough as nails” that was passed down from our grandmother.  Gaydene has lupas.  Autumn has peripheral neuropathy and in the last two months has undergone two surgeries for arterial splints in both her legs.  They both walked.  Thank you Gary, James Ray, and Amanda for walking alongside your wife and mother…and me.

That was the longest 1½-2 miles!  But the CLL journey has only begun.  As we passed the “Walk This Way” signs, I thought about what God has said about walking. 

Psalms 119:105  “Your word is a lamp to my feet and a light for my path.”

Psalm 56:13  “For you have delivered me from death and my feet from stumbling, that I may walk before God in the light of life.” 

Isaiah 41:10  “Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.”
2 Corinthians 5:7  "For we walk by faith, not by sight."
Ephesians 5:2  "And walk in love, as Christ loved us and gave himself up for us, a fragrant offering and sacrifice to God."
Micah 6:8  "He has told you, O man, what is good; and what does the Lord require of you but to do justice, and to love kindness, and to walk humbly with your God?"

We all crossed the finish line…some sooner than others…but we all crossed. 

Hebrews 12:1  “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.”

2 Timothy 4:7  “I have fought the good fight, I have finished the race, I have kept the faith.”

Ecclesiastes 9:11  “I have seen something else under the sun: The race is not to the swift or the battle to the strong, nor does food come to the wise or wealth to the brilliant or favor to the learned; but time and chance happen to them all.”

By the end of the evening, actually before it even began, I was tired.  As we waited for the elevator in the parking garage, my Bethany, my little girl, piggy-backed her mama.  How many times in years past did I carry my children when they were tired?  How often has our Lord carried us when we thought we couldn’t take another step?

Matthew 11:28-30  “Come to me all of you who are weary and burdened, and I will give you rest.  Take my yoke upon you and learn from me for I am gentle and humble in heart, and you will find rest for your souls.  For my yoke is easy and my burden is light.”

In two more weeks, we travel back to MD Anderson for another round of tests, to find out if my brother is an HLA match, to meet with the transplant doctor and with the head of the CLL department to determine the best front-line therapy, to consider a clinical trial, to decide what path to take.  

To those who have walked this walk before, to those who walked with me last night, to those who donated, to those who stand with me, to those who write and send notes, posts, and cards, to those who have offered in the weeks and months ahead to drive, sit, cook and clean, to those who offer words of encouragement, to those who listen, to those who pray…thank you. 

1 Corinthians 12:4-6; 27  “There are different kinds of gifts, but the same Spirit distributes them.  There are different kinds of service, but the same Lord.  There are different kinds of working, but in all of them and in everyone it is the same God at work.”  “Now you are the body of Christ, and each one of you is a part of it.”

Thy Word is a lamp unto my feet and a light unto my path.

When I feel afraid, think I've lost my way,

still you're there right beside me.

And nothing will I fear, as long as you are near.

Please be near me to the end.

I will not forget your love for me and yet

my heart forever is wandering.

Jesus be my guide, and hold me to your side,

I will love you to the end.

Nothing will I fear as long as you are near.

Please be near me to the end.

Thy Word is a lamp unto my feet and a light unto my path.

Thy Word is a lamp unto my feet and a light unto my path,

and a light unto my path.

You're the light unto my path.

I plan on walking in next year's walk and in many after that.  Here's to the journey.  Walk this way.

Making a Difference

When faced with your own mortality, the question arises of whether or not you have made a difference in life.  Not that I have any intention of not making it through this new phase, but the diagnosis itself gives way to introspection. 

As a parent, each choice, each decision, everything done both consciously and subconsciously shapes the future one child at a time.  I had two.

As a youth group leader, I was given the incredible gift of hundreds of teenagers over nearly two decades to love and guide, to laugh with, to challenge and be challenged, to embrace, to point the way.  I have more memories than I could ever write down.  They impacted my life much more than I imagine I ever did theirs.  But maybe, in some small way, God allowed me to make a difference.

As a Type A personality, we want to make a difference in our work as well.  It’s not enough to just do your 8 to 5 and call it a day.  I have had a few opportunities over the years that I will always value.  As a trainer, it was not just teaching guys how to sell cars.  It was a way to teach life skills…communication, understanding people and their needs, learning to listen, demonstrating the work ethic I learned from my dad, working with integrity.   The five-point walk around was just a bonus!  While at the Chamber, I had the distinct privilege of being part of a team that made great strides in that community.   It’s difficult to have had that and then move on.  Perhaps that too was a season.  A part of my journey.

It seems there comes a time in life when we receive more than we give.  It’s so much more fun to give, but I am learning that there is grace in receiving.  As I look back over the years, I am struck by the magnitude of “what if’s.”  But none of us can go back, right any wrongs, hit replay and see if the story turns out differently.  We each have this one moment.  Some of us have had thousands upon thousands of moments.  Some we chose well.  Others we didn’t.  So what do we choose in this moment?  Will we choose to love or to hate?  To forgive or to resent?  To appreciate or to criticize?  To move forward or to live in the past?  To embrace each day or to live in fear?  “For God has not given us the spirit of fear; but of power, and of love, and of a sound mind.”  2 Timothy 1:7

Some people will make history.  Others will only be remembered by the ones who loved them…and that but for a brief time.  God has given us the opportunity, the responsibility, to show Him and to share Him in our “Jerusalem, Judea and Samaria, and to the ends of the earth.”  I didn’t get to be a missionary, but I got to love teenagers who did.  As a parent, I made mistakes.  But there are now three young lives that could change tomorrow.  Jobs come and go, but the impact we have on people remains a part of their fabric. 

Make Me a Blessing

---

Out in the highways and byways of life,
many are weary and sad;
Carry the sunshine where darkness is rife
making the sorrowing glad.

Make me a blessing,
Make me a blessing,
Out of my life
May Jesus shine;
Make me a blessing, O savior, I pray,
Make me a blessing to someone today.

Tell the sweet story of Christ and His love;
Tell of His pow'r to forgive;
Others will trust Him if only you prove
true ev'ry moment you live.

Give as 'twas given to you in your need;
Love as the Master loved you;
Be to the helpless a helper indeed;
Unto your mission be true.

Make me a blessing,
Make me a blessing,
Out of my life
May Jesus shine;
Make me a blessing, O savior,
I pray Thee, my Savior,
Make me a blessing to someone today.

The Hope Box

Today I went to my cousin’s house to explore the Hope Box.  Bonnie is a breast cancer survivor, and the Hope Box is filled with wigs, scarves, and hats not only from her bout with cancer but also from three others after her.  I will be the fifth one to share in the Hope Box.

We played dress up with all the wigs and various head coverings.  It was confirmed that I am definitely a brunette.  Just cannot do the blonde thing.  :)  There were two wigs that looked good, one that looked great!  And the scarves and hats were really cute.  It’s amazing how something so relatively simple can lift your spirits, just knowing that you won’t have to look so vastly different…at least when in costume. 

After a lovely lunch, we went to the Women’s Health Boutique who sells a variety of necessities for ladies with cancer.  The one thing that had not made the Box round trip was the comfy sleeping cap.   When you don’t have hair, there’s nothing to keep heat from escaping.  So I got a couple to add to the Box.

I love that it’s called the Hope Box!  How appropriate.  Not only is it encouraging to know that there are things in place that can ease the temporary cosmetic changes, it is also encouraging to know that everyone who has worn these coverings are still around to share not only the Box but also their support.

Hope has many different faces.  It can be a box of head coverings, a card from a dear friend, a Facebook post, a phone call, a prayer.  Sometimes it’s a lingering hug, a gentle touch, a knowing look. 

Hope means different things to different people.  There are several ways to define hope.  “To wish for something with expectation of its fulfillment.”  “To have confidence; trust.”  “To look forward with confidence.”  “To have a wish for.”  “A reasonable ground for this feeling.”  “A person or thing that gives cause for hope.”  “To trust, expect, or believe.” 

Sometimes we say “I hope things get better” and we don’t necessarily believe it.  Other times, our thoughts may be better reflected as “My hope is grounded in what I believe.” 

God’s Word speaks often of hope. 

Hebrews 11:1  “Now faith is the assurance of things hoped for, the conviction of things not seen.”

Psalm 21:34  “Be strong and take heart, all you who hope in the LORD.”

Psalm 43:5  “Why are you downcast, O my soul?  Why so disturbed within me?  Put your hope in God, for I will yet praise him, my Savior and my God. “

Romans 12:12  “Be joyful in hope, patient in affliction, faithful in prayer. “

Thank you, Bonnie, for sharing Hope with me today.  It was more than just what was in the Box.

My hope is built on nothing less

Than Jesus’ blood and righteousness.

I dare not trust the sweetest frame,

But wholly trust in Jesus’ Name.

On Christ the solid Rock I stand,

All other ground is sinking sand;

All other ground is sinking sand.

When darkness seems to hide His face,

I rest on His unchanging grace.

In every high and stormy gale,

My anchor holds within the veil.

His oath, His covenant, His blood,

Support me in the whelming flood.

When all around my soul gives way,

He then is all my Hope and Stay.

When He shall come with trumpet sound,

Oh may I then in Him be found.

Dressed in His righteousness alone,

Faultless to stand before the throne.

On Christ the solid Rock I stand,

All other ground is sinking sand;

All other ground is sinking sand.