Something New

The year my son, Joshua, was a senior in high school was filled with many emotions.  Every special event or activity was marked with my tears as I thought of his last game, last concert, last musical, last play, last dance.  I wasn’t particularly sad, just reminiscent.  It was the end of his childhood.  It was the beginning of something very new.

Since receiving the news that we will soon be moving forward with my treatment and transplant, recent events and activities have ushered in many of the same emotions.  While this is not the end, Lord willing, it is the end of life as it has been.  It will be the beginning of what is called my “new normal.”

This weekend, Paul whisked me away for one last getaway before treatments start.  It will be a while before we can be that far away from MD Anderson again.  Walking together through shops, splitting a Reuben, discovering new wineries, visiting old memories, enjoying the scenery, and even catching the rare sight of falling snow all mingled together into new memories to cherish. 

 

Next weekend, the children and grandchildren are coming for lunch and the afternoon.  While the agenda includes making sure that they all completely understand what is ahead, for me it will be the joy of my kids all in one place, the beautiful noise of voices and laughter, the sheer delight of watching my grandbabies. 

Tears come.  Happy tears.  I’m-going-to-miss-this tears.  Fear tears.  Thankful tears.

While I know there will be some very unpleasant side effects, the toughest one for me will be being apart from the ones I love.  My focus has to be on the fact that giving up this year will prayerfully buy back many more in the future. 

More trips to the country, more giggles with grandbabies, more family meals complete with its beautiful noise, more glasses of wine, more conversations, more opportunities, more to learn, more to experience, more hugs and kisses, more time with the ones I love. 

This is not the end.  It’s the beginning of something new.

Ready or Not, Here We Go!

As most of you know, we have spent the last two days down at MD Anderson updating labs and consulting with Dr. O’Brien, head of CLL, and Dr. Shah, our transplant doctor.  In a nutshell, the flag has waved and we’re on our way.

Many still inquire as to why we have chosen the more aggressive route.  My numbers are actually stable and I am not in immediate danger.  The thing that is easy to forget, but important not to, is that I have all the possible negative markers making it basically inevitable that the transplant will be necessary sooner than later.  I could wait another three months, check my numbers, and see if my body becomes unable to continue fighting as it is now.  But why?  There are encouraging treatments on the horizon, such as the BK inhibitor PCI-32765, but it could be years before we know its effects.  I don't have years.

When the February appointments were made, I did not have a match.  After F-22 came back with the antibody issues, I specifically prayed that if God wanted us to move forward as of the February appointments that He provide the donor.  He has now not only provided one perfect match but an additional two near perfect matches!  How do you ask for something so explicitly and then say no?

Both doctors are totally on board but had to make sure that we understood the possible consequences.  We do.  Today, Dr. Shah asked if I was nervous.  I would be lying to say otherwise, but I also trust in my Lord and my doctors.

The first stop on this phase of the journey is my Campath regimen.  For those who remember a few posts back, Campath is a monoclonal antibody that, instead of killing everything like traditional chemo does, attaches to the targeted antigen for destruction.  It’s like a laser-guided bomb.  The primary side effect is a suppressed immune system, so I will have to be much more guarded.  (I will be taking two antibiotics to protect against infection, Bactrim DS and Valganciclovir hydrochloride …or Valcyte for short. :)   The good news is that after a first injection to see how I do and second one for practice, Paul will be able to administer these to me three times per week at home, eliminating some of the endless driving that will take up much of the next months.  The first round will be for four weeks after which I will go in for blood work, a bone marrow biopsy, and meetings with both doctors. 

While I’m on Campath, Dr. Shah’s team will be deliberating between the three donor candidates and determining the best fit.  They have now found that blood type and the physical condition of the donor can also play an integral part.  But that’s their job.

Depending on how my marrow responds, they will either allow the Campath to continue whittling down my diseased cells for another round, or they will decide to move on with transplant conditioning.  The prayer here is for the Campath to work well.  The more disease that can be killed without killing me in the process is a good thing.  When my numbers are where they want them to be, they will have me take three weeks off to allow my body to recover and then proceed with the transplant conditioning.

The next stop will be my 30-40 day stay at MD Anderson, starting with conditioning therapy.  The transplant conditioning will either be myeloablative or non-myeloablative.  I know.  Big words.  If you recall in a previous post when I discussed a possible “mini” transplant, these are what makes the difference.  Myeloablative means that they will use the highest-powered chemo and kill everything possible.  Non-myeloablative means that they use a little lower powered chemo and trust that the GVL (graft vs. leukemia) effect will do the trick.  Today, Dr. Shah said that they will not make this decision until they see what happens with my marrow.  Currently, she is leaning toward myeloablative because I am young and strong and it increases the probability of killing all the bad guys.  So we’ll see.  Either way, I’ll lose my hair.  Whatever.

Currently, we have surmised that the stable condition of my disease probably stems greatly from the strength and health of my body.  However, my insides are working SO hard to fight the leukemia that fatigue and weight loss are increasing.  I have to eat more than I’m comfortable doing just to keep weight on.  But still I lose.  This is another indication that the timing is good for moving forward.  My body can’t keep this up forever!

So as scary as the prospects of the transplant are, we are confident that this is the path that will provide the greatest possibility of extended years.  I have a dear friend who battled breast cancer last year and also took the more aggressive route.  Sometimes you have to choose the hard thing up front to increase your odds later on. 

There is so much to live for!  I guess I’ll save that for another day.

"Oh, the Places You'll Go!"

If you haven’t yet noticed, I have on a couple occasions received my blog inspiration from our Pastor Dean Wood.  This is another. 

Sunday’s message started with an analogy from Dr. Seuss’s famous “Oh, the Places You’ll Go!”  Pastor Dean’s focus was that sometimes we find that the best course is both “inconvenient and unstrategic”.  His messages often trigger thoughts related to my current travels.  Having CLL with all the negative markers and awaiting a stem cell transplant is neither convenient nor planned.  But here we are.

You'll look up and down streets.  Look 'em over with care.
About some you will say, "I don't choose to go there."
With your head full of brains and your shoes full of feet,
you're too smart to go down any not-so-good street.

Often as teens or young adults, we think we have our life course calculated and are confident of our final destination.  Yeah, right.  It doesn’t always work that way. 

You have brains in your head.
You have feet in your shoes
You can steer yourself
any direction you choose.
You're on your own.  And you know what you know.
And YOU are the guy who'll decide where to go.

Perhaps we think we know where we’re going, but we don’t know how.  We think we know where we’re going, but we don’t know when.  We think we know where we’re going, but we don’t know why.  

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

Ezra’s charge to the people of Israel was to stop their traveling for three days of fasting and prayer.  What?!  Why would we want to take time away from pushing forward just to fast and pray?! 

You won't lag behind, because you'll have the speed.
You'll pass the whole gang and you'll soon take the lead.
Wherever you fly, you'll be the best of the best.
Wherever you go, you will top all the rest.

Except when you don't
Because, sometimes, you won't.

If we believe that God is in the journey, why do we insist on going our own way?  Strategy and planning are empty without the hand of God.  There is always so much that we want to do, but we rarely stop to listen.  What is the point of arriving if we are not also becoming the person He desires us to be?  What is the point of arriving if He’s not there? 

You can get so confused
that you'll start in to race
down long wiggled roads at a break-necking pace
and grind on for miles across weirdish wild space,
headed, I fear, toward a most useless place.
The Waiting Place...

We have had to wait on this journey of ours.  Wait for a diagnosis.  Wait for test results.  Wait for treatment.  Wait for a donor match.  Wait for a plan.  God can teach us much in our waiting if we let Him.

...for people just waiting.
Waiting for a train to go
or a bus to come, or a plane to go
or the mail to come, or the rain to go
or the phone to ring, or the snow to snow
or waiting around for a Yes or a No
or waiting for their hair to grow.
Everyone is just waiting.

Waiting for the fish to bite
or waiting for wind to fly a kite
or waiting around for Friday night
or waiting, perhaps, for their Uncle Jake
or a pot to boil, or a Better Break
or a string of pearls, or a pair of pants
or a wig with curls, or Another Chance.
Everyone is just waiting.

Sometimes the wait is part of the journey.  Sometimes it’s a lack of willingness to shift into gear. 

But on you will go
though the weather be foul
On you will go
though your enemies prowl
On you will go
though the Hakken-Kraks howl
Onward up many
a frightening creek,
though your arms may get sore
and your sneakers may leak.

On and on you will hike
and I know you'll hike far
and face up to your problems
whatever they are.

I’m not sure of Dr. Seuss’s eternal view, but this particular verse is quite “you” focused.   If we continue to gaze at ourselves in the rearview mirror while our foot is on the gas, we will eventually crash.  If we keep our focus on the One we’re following, we will have a much better chance of arriving safely.  Sometimes we’ll need to stop and rest.  Sometimes there will be traffic.  Sometimes there will be storms.  We may have a flat tire or blow a gasket.  But if we know Who we are following, the Way will become clear.

So...
be your name Buxbaum or Bixby or Bray
or Mordecai Ali Van Allen O'Shea,
you're off to Great Places!
Today is your day!
Your mountain is waiting.
So...get on your way!

Just remember Who is the Author of the Journey.

“A man’s heart plans his way, but the Lord directs his steps.”

Proverbs 16:9

The Masterpiece

When you look death, or the distinct possibility thereof, squarely in the face it tends to change your life perspective.  While we all know that we won’t get outta here alive, we don’t tend to live each day like it could be our last.  I am not suggesting a morbid outlook, but it has become more and more evident to me that we bustle through our days busy with work and all our many responsibilities of life often letting the lesser things dominate the greater.

I suppose that every person has their own definition of lesser and greater things.  Those definitions, however, often change when weighed on the scale of life.

Last week, I didn’t feel quite up to par.  Nothing big.  Just a sore throat, lower temperature than normal, increased aches and fatigue.  By Friday, the good doctor thought it best to not only do a CBC but also a few other tests…just to be on the safe side.  I was in a hurry to get home and have my nap because the weekend was going to be filled with “the greater things.”

My daughter, Bethany, and two of my grandchildren (Dana, 4 and Ethan, 9 mths.) were coming to spend the night.  Actually, Bethany was having a much needed girls night out with her BFF Holly and we were keeping the kids.  Her night included some amazing tacos, a painting party, and lots of chocolate.  Our evening included a walk and scooter ride around the duck pond, investigating newly hatched ducklings and an egg that didn’t quite develop, weeding and digging in the back yard flower beds, making and enjoying spaghetti, a little girl and a big bubble bath, playing beauty shop, watching the constant discoveries of a 9 month old, books, giggles, and staying up later than mommy would have approved.  Tadee was tired.  But what wonderful memories!

After breakfast and more outside adventures, Bethany and crew headed out to their next stop and I headed inside to freshen up for my next “greater thing.”  My BFF from elementary through high school, Kay Smith McCuller, came in from Nacogdoches to take me to lunch and then to spend some time with her sister.  She lost her mom to Alzheimer’s not long ago and had already laid her dad to rest.  There are countless memories of growing up in and out of each other’s houses…her mom’s fruit kolaches, sleepovers, painting pet rocks, whispering and giggling into the night only to be met by a deer head (that’s another story!), bike rides, and boyfriends.  Even though life has taken us different directions, when you reconnect with a friend you simply take up where you left off.  Amazing.  What a blessing to add another memory to the list.

After a much needed nap and time with my sweetheart sitting and talking around the fire pit on the back porch, my BFF from college, Kelly Stephens Blanscet, joined us, after attending another friend’s birthday party, to spend the night and next day.  Wrapped in warmth, sitting around the fire and under the stars, we three talked until the fire and I both wore out. 

After enjoying morning coffee, waffles, and more conversation, we headed out to the antique shops in Tomball and lunch on the porch of a new little eatery.   The outing required several stops for me to sit and rest, but that’s ok, no one was in a hurry.  More memories.  Indeed, this is part of the greater things.

As I collapsed into the covers for a much-needed nap, the events of the weekend played in my mind.  Just as Bethany and Holly celebrated their friendship through the medium of paint, each memory made creates a brush stroke on the masterpiece of our lives.  Each connection is a thread in our life tapestry.  Each day enlarges the final work, but we don’t know when the last touch will be added or what size it will turn out to be.  All we can do is choose the colors. 

Paint well. 

“So we do not lose heart.  Though our outer self is wasting away,

our inner self is being renewed day by day.

For this light momentary affliction is preparing for us

an eternal weight of glory beyond all comparison,

 as we look not to the things that are seen but to the things that are unseen.

For the things that are seen are temporal, but the things that are unseen are eternal.”

                                                                2 Corinthians 4:16-18 

I Have a MATCH!

It’s one of the few times in my life that I have been left speechless!  :)  I just got off the phone with my MUD Coordinator, and she told me that the M-47 blood test that came in last week has been completed.  He is a perfect 14 of 14 match!  That means that he does not have any of the DP issues!!  In addition, a new donor possibility arrived today from a M-31.  She will go ahead and test his as well so there can be another back up.  While the doctors may still want to consider the advantages of the F-22/13 of 14/with the DP issues against the M-47/14 of 14/with no DP issues, she said that she is 99.9% certain that no DP trumps age. 

As soon as I got off the phone with Susan, I called Paul.  While this is exactly what we have been hoping and praying for, the reality of finding my match left us both speechless.  I know it’s not difficult to imagine Paul speechless, but I’m a totally different story!  :)

The M-47 is from Europe.  I’m not sure what that means for transportation of the stem cells, if it will take longer, if they will opt for someone closer….  I’m sure we will learn more about that at our appointment in February with my transplant doctor. 

Maybe he’s from Italy with a love of red wine and fine foods.  Maybe he’s from Scotland and taught at the University of Glasgow where Joshua received his Master’s.  Maybe he’s from my ancestral island of Ireland or perhaps of German descent as was my paternal grandmother.  Wherever he is from, God made a man four years after I was born with the same HLA typing as I have.  He knew way back then that I would need them someday.  Thank you, Lord, that we are “fearfully and wonderfully made.”  Maybe he knows my God.  Maybe he has yet to meet Him. 

Well, I’m still fairly speechless.  I don’t know why.  We pray expectantly, then when He answers we act all surprised.  Goodness.  Humans. 

Paul was eager to move up our scheduled MD Anderson appointments, but there doesn’t seem to be a need to do so.  And who knows what M-31 might turn out to be.  The blessing is that when we go back February 7-8, we will definitely have plenty to talk about.  Maybe by then we will no longer be speechless.

My Caregiver

As we sat on the porch and then took our regular walk around the pond, our conversation focused on an aspect of my disease that I haven’t spoken of here.  My caregiver.  Paul also reminded me that besides translating medical jargon and giving donor updates, my blog is an expression of my thoughts and feelings.  So today’s post might be a bit personal for some, but this is what is on my mind.

While Paul is probably the most well studied of us all in this journey of ours, he has not found the words to write about his feelings as a caregiver.  By nature, he is one who carries the weight of responsibility squarely on his shoulders.  In our marriage, he is a selfless giver, he is endlessly patient, completely loving, and ignores his own pain and needs and focuses only on mine.  I don’t deserve this…. 

The role of caregiver is adding a whole new dimension to his already sacrificing character.  In addition to maintaining his responsibilities at work, as caregiver he is charged with:

 
                ·  Providing emotional support

·  Providing physical care during and
   after hospitalization

·  Caring for the central line (catheter)

·  Helping with administration of oral
   medications

·  Recording the medications taken

·  Giving intravenous fluids and
   medications using a pump device

·  Identifying changes in my condition

·  Obtaining medical care if needed (ie. driving like a crazy man back down to
   MD Anderson!)

·  Reporting symptoms to health care staff (every little one is important!)

·  Gathering information (which he has done immensely!)

·  Keeping family members and friends up-to-date about my condition

·  Monitoring the number of visitors (and making sure they are not sick.)

·  Maintaining a clean home environment after hospitalization

·  Preparing food (based on the recommended diet given by the MD Anderson staff.)

·  Providing transportation to and from the hospital for follow-up care  (This one alone
   includes 100 days (post-hospital stay) of ambulatory care, not to mention the weeks
   preceding the transplant for front-line treatments 3 times per week, and 30-40 days
   IN the hospital, having to drive back and forth.)

·  And making me behave!  (This one is particularly difficult...well, you know me!)

Paul has never been one to ask for help.  However, in this case, he knows beyond a shadow of a doubt that he cannot do this alone.  My mother is in line as the back-up quarterback.  But at almost 80 and with her own health issues, he is concerned as to how well she will hold up to the pressure…not only the pressure of the schedule, but the pressure of seeing her baby sick.  In all ways, God provides.  We know He will in this area as well. 

Paul takes all his roles very seriously.  Whether as a husband, a father, an employee, a friend, or now as a caregiver, he is one who gives, who listens, who is diligent, patient and kind…punctuated with that dry sense of humor.  He is quiet and unassuming.  He is confident but not haughty.  He’s funny but not silly.  And he lets me know every single day how very much he loves me. 

He has always been this way.  It is rare to find these types of qualities in a teenager, but this is how I have always known him to be. 

While he finds it difficult to put this in writing, he is afraid.  We both are.  He has been frustrated since first diagnosis that he can’t fix this.  He SO wanted to be my bone marrow match.  It broke his heart that he wasn’t.  He already IS my hero.  He doesn’t have to be my HLA match for that.  He doesn't want to make a costly mistake.  He doesn't want to miss anything.  He puts an inordinate amount of responsibility upon himself.  Neither of us is willing to do anything less than absolutely everything we can to beat this thing.

Every day that we read another article, another blog, we are reminded that this 17p deletion is the only prognostic factor in CLL that bears the term “ultra” high risk.  This transplant is my only shot, other than a good old-fashioned miracle.  Chemo will not work for me.  The role of Campath is only to get me into remission long enough to get to the transplant. 

While we do not spend our days lamenting the fact that I have a terminal disease, it is there in the back of our minds trying to steal our future.  We do not intend to let it.  Not as much as we are able, and with the grace of God. 

As most of us travel through life in the fast lane, this journey takes us on a more scenic route.  You tend to slow down and look at the beauty around you.  You don’t want to miss what’s coming around the next curve.  You put the top down and feel the breeze in your face, the warmth of the sun.  Its rays pierce through the clouds like He pierces His hope into the cloudiness of our souls. 

My caregiver needs as much prayer as I do.  Maybe more.  I just have to do what I’m told.  He has to carry the weight of our world on his shoulders.  May God, and others close to us, hold him up.  Psalm 68:19 “Praise be to the Lord, to God our Savior, who daily bears our burdens.”  Galatians 6:2  “Carry each other’s burdens, and in this way you will fulfill the law of Christ.” 

From the first time I saw you until the day I breathe my last, all my love to you…my caregiver, my sweet husband, my Paul. 

The first time ever I saw your face
I thought the sun rose in your eyes
And the moon and stars were the gifts you gave
To the dark and the empty skies, my love,
To the dark and the empty skies.

The first time ever I kissed your mouth
And felt your heart beat close to mine
Like the trembling heart of a captive bird
That was there at my command, my love
That was there at my command.

And the first time ever I lay with you
I felt your heart so close to mine
And I knew our joy would fill the earth
And last till the end of time my love
It would last till the end of time my love

The first time ever I saw your face, your face,
your face, your face

Courage

Have you ever noticed how God often reinforces His message by revealing it to you in several different ways?  I have had a couple different books going at the same time.  I just finished Francine Rivers’ novella, The Priest, which is the story of Aaron and the exodus from his vantage point.  It was a story of failure, of faithfulness, of fear, and of courage. 

I am also reading Max Lucado’s, Out Live Your Life.  Each chapter has it’s own message.  I just finished the chapter called “Persecution:  Prepare for it; Resist it.”  A passage of summation that really penetrated my heart was, “So how can we prepare ourselves?  Simple.  Imitate the disciples.  Linger long and often in the presence of Christ.  Meditate on his grace.  Ponder his love.  Memorize his words.  Gaze into his face.  Talk to him.  Courage comes as we live with Jesus.”  

I thought back to Aaron and how he spent his life, post exodus, studying the words of law that God gave to Moses.  It was his job to know them completely, to obey them, and to teach them to the people.   It took courage to speak God’s truth to the stubborn Israelites.  His courage came from seeking and spending time with God.

At church on Sunday, Pastor Dean Wood shared his message “Courage from God’s Hand & God’s Word,” Ezra 7.  Consider Ezra 7:10, “For Ezra had set his heart to study the law of the Lord and to practice it, and to teach His statutes and ordinances in Israel.”  The KJV uses the word “seek” in place of “study.”  So in essence, the passage describes how Ezra determined or “set his heart” to seek the Lord, to practice or do what he’d learned, and to teach it to others.  Sound familiar?

As the pastor was teaching, a New Testament verse came to mind.  James 1:22 “But be you doers of the word, and not hearers only, deceiving your own selves.” 

As I have pondered these verses and concepts, I am reminded of the courage that so many demonstrate in the day-to-day living of their lives.  Whether we consider the courage of our soldiers, the courage of teens who make right choices, the courage of missionaries who leave the comforts of their world to make a difference in another, the courage to get up everyday and do the work that God has given you to do, the courage that it takes to love your spouse well, to raise your children to love and fear the Lord, to work honorably and ethically, the courage to keep going in the midst of loss, the courage to speak the truth in love, the courage to share your faith, the courage to do what’s right even when it’s not popular.  I have also been given the privilege of seeing the courage of other cancer patients who fight the good fight, who keep believing, who embrace every moment and live life to its fullest.  I see them encourage others and never give up. 

“Only let your manner of life be worthy of the gospel of Christ, so that whether I come and see you or am absent, I may hear of you that you are standing firm in one spirit, with one mind striving side by side for the faith of the gospel….”  Philippians 1:27

“Be strong, and let your heart take courage, all you who wait for the Lord!”  Psalm 31:24

“Have I not commanded you?  Be strong and courageous.  Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.”  Joshua 1:9

“For God has given us a spirit not of fear but of power and love and self-control.”  
2 Timothy 1:7

Courage comes as we live with Jesus.