Short Term Pain for Long Term Gain!

A few posts ago, I mentioned that I have so much to live for!  We all do.  But it’s often not until you understand the true frailty of life that you embrace the people and things that you hold so dear. 

I began my Campath treatments this week.  Paul and I both commented how incredibly surreal it was to finally be here.  In one sense, it’s only been a few months.  In other ways, it’s already seemed like a lifetime. 

The first three days are what is called the ramp-up doses.  The first is 3mg, the second 10, and the third and remaining injections will be 30mg.  They have given me Benedryl and saline via IV (and left a catheter in my hand so they wouldn’t have to find a vein everyday) and, as of today, a shot of Campath in each arm.  Tomorrow it’s my leg.  They will rotate around my limbs for each shot.  Yesterday’s shot didn’t really hurt until this morning.   Then it felt like I’d had a tetanus shot.  You know how those ache.  She said that today’s would be worse because of the increased dosage.  When we got home both days, I only had the energy to sip down some soup and crackers and crawl into bed.  About this time yesterday, I started feeling woozy and nauseated.  So far so good today.  They gave me anti-nausea pills, but I didn’t take one yesterday because I didn’t want to use them until I really needed them.  I don’t want to act like a baby.  Today, my nurse fussed at me and said to stop being so brave and take the pill!  :)  I will next time. 

Next week, I will take my Benedryl and Tylenol at home and then go in for just my injection M/W/F.  It will be a faster process.  They will check my numbers at least once or twice a week to see how the drug is working and to make sure I don’t need a transfusion.  The main side effect that they are concerned about is infection.  My blood counts will be very low very soon making my immune system very vulnerable.  Another side effect that I’ve already noticed is a light tickle/itching sensation.  It doesn’t hurt, but it kept me from sleeping last night.  More Benedryl.

We won’t know until we go to MD Anderson on March 26 and 28 for a bone marrow biopsy and meetings with both the Leukemia and Transplant teams whether or not I will have a second round of Campath.  If so, it’s four more weeks.  If not, it’s three weeks off and then into the hospital for the transplant.  Even though Paul and I both know that the transplant is inevitable, we both secretly have hoped for two rounds of Campath just to have a little more time to mentally and emotionally prepare for the transplant.  But either way, it’s coming soon to a theater near you.  :)

All of this is the pain part.  Shots are uncomfortable, IV’s are no fun, side effects of cancer drugs are scary, and the transplant itself has too many possible side effects to think about right now.  We will walk through that together when the time comes.

The important thing to focus on is the “gain” part.  So many folks have said that a good attitude is critical for healing.  When you think about it, what choice does one have?  I could be grumpy and mad about the whole thing, but that would only make me, and everyone around me, miserable.  Or I can embrace this season, walk through it with dignity and a smile, believing that God has a purpose in this and looking every day for the simple blessings of love, life, family and friends. 

This past weekend, we traveled back up to our little piece of heaven in Oletha, TX.  We were not sure whether or not we would be allowed to be two hours away from my doctors and hospital during the Campath stretch.  We know that we can’t once we start the transplant process.  It will be a long time before I can be that far from MD Anderson.  :/  (More pain.) 

So we walked and talked, fished and photographed, enjoyed the cool evenings in front of a roaring fire, and breathed in the beauty of God’s creation.  It’s so peaceful there.  When the time comes that God calls us home, that is where these old bodies will rest.  But we’re not planning on that being anytime soon!  There is still so much to live for.  

I am married to the dearest, sweetest man in the world.  I have amazing children and three grandchildren who have captured my heart.  I have a mother who would give her life for me, a brother who in all his antics loves his little sister, and countless more family and friends who I hold so dear.  God has given us a church body who has embraced us and a pastor who shares his heart, his vulnerability, and his love for our God and His people.  I have a business partner with plans for the future.  (He is a cancer fighter/survivor too.)  We have children yet to marry, grandchildren yet to be born, all of who need to experience the love and memories yet to come. 

These are just part of the gain.  Every day reveals more of His goodness and the gifts of life.  We can complain about the pain in the world or we can spend our time touching the hurt around us.  God gives us all a circle of influence.  Only we can choose what we do with it. 

So for now, I will take my shots and various medications, I will deal with the side effects, I will walk through this valley, I will fight for life.  There is still so much to do, to see, to be, to give.  I will thank God for His nearness and His grace.  I will consider each day a gift.  I will cherish every moment with the ones I love.

The pain is so minimal in light of the gain.

So teach us to number our days that we may get a heart of wisdom.

Satisfy us in the morning with your unfailing love,

that we may sing for joy and be glad all our days. 

Psalm 90:12,14

Touched by Prayer

Twice in the last two months, groups of Godly women united together to lay their hearts before God and their hands on me.  What an honor!  Prayer warriors at Cypress Bible Church who I have known for years prayed for me before my donor match was found.  God provided three.  Yesterday after the service at Creekside Church, a group of women, most of whom I have only known for a short time, spontaneously gathered around a dear woman who recently lost her youngest child in an accident and me.  What a privilege it is to be carried before the throne of God!

“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

“The effectual fervent prayer of a righteous man avails much.”

James 5:16

There are many opinions related to the “laying on of hands.”  It is used often in scripture.  While I do not hold to the philosophy of magical, mystical healing, I do believe two things.  One, God can heal any way He chooses.  Second, there is comfort in touch.  Touch has been shown to reduce pain and anxiety.   Massage therapy is used not only for back issues but also for depression, anxiety, headaches, intestinal distress, immune disorders, and cancer.  It has been proven that babies who are touched more in infancy development better.  How are we any different?

“Is anyone among you suffering?  Let him pray.  Is anyone cheerful?  Let him sing praise.  Is anyone among you sick?  Let him call for the elders of the church, and let them pray over him, anointing him with oil in the name of the Lord.”

James 5:13-14 

The touch of your spouse can immediately bring comfort.  The touch of a child warms your heart.  The touch of a friend can offer hope.  The touch of God can bring healing.

The body of Christ at Pineview Bible Chapel, where I grew up, prays for me continually.  I have known these sweet people all of my fifty years and have seen their diligence in prayer.

“Rejoice always, pray without ceasing, give thanks in all circumstances;

for this is the will of God in Christ Jesus for you.”

1 Thessalonians 5:16-18

“Devote yourselves to prayer, being watchful and thankful.”

Colossians 4:2

There are times when I don’t know what else to pray.  But I know that He hears my heart.

“Likewise the Spirit helps us in our weakness.  For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words. And he who searches hearts knows what is the mind of the Spirit, because the Spirit intercedes for the saints according to the will of God.”

Romans 8:26-27

I know “that God causes all things to work together for good to those who love God, to those who are called according to His purpose.”  Romans 8:28

I know that “the LORD is near to all who call on Him, to all who call on Him in truth.”  Psalm 145:18

But I know Whom I have believèd,
And am persuaded that He is able
To keep that which I’ve committed
Unto Him against that day.

And THIS was the Good News!

If any of you read Paul’s most recent post “What Did You Say?” (http://paulfowler.blogspot.com/2012/02/what-did-you-say.html), you would have learned that due to insurance issues Paul will not be able to administer my Campath injections.  Well, he could…if we wanted to shell out $55,000! 

So we decided to go with Plan B.  I will have the injections at the good doctor’s office.  The ramp up injections will be three days in a row, followed by M/W/F injections thereafter.  Paul will need to be with me for the first three, but after that I am hoping to be able to drive myself.  At yesterday’s visit, we all laughed at how ridiculous it was for insurance companies to rather pay office visits and all the accompanying expenses than just pay for the drug.  They promised to call me with the updated pricing for having it done in the office as soon as the insurance company got back with them.

Which brings us to today’s blog. 

The good doctor’s insurance gal called to say that she had “good news!”  “Your out-of-pocket expense for getting your Campath in the office is MUCH lower!!”  (I’m getting really excited at this point of the conversation, thinking “bring on the $10 co-pays” like we have for all my other meds that go along with the Campath!)  She then explained that my first injection would cost us $284 and all subsequent injections would be $199.  “And THIS is the good news?!”  So the first round of Campath will cost $2,473.  Now while that is, indeed, much less than the $55,000, it is still a chunk of change to come up with for four weeks of treatment.  So much for a $10 co-pay!  :/  How do normal, everyday folks afford to have cancer?!  (Still kicking myself for not buying that Aflac Cancer Policy!  $10K at diagnosis!)

On a brighter note, and what I had originally planned to write about, all three of my medical teams (The “good doctor” [my local oncologist], MD Anderson Leukemia, and MD Anderson Transplant) are angels of mercy!  From lab assistants, nurses, and PA’s to the doctors themselves, I have never felt so well attended to by a medical team.  They are knowledgeable and kind.  They are encouraging and endearing.  They are conscientious and compassionate.  

Dr. O’Brien is internationally renown as the top in the field.  One could think that I was just lucky.  But I think otherwise.  God has had His hand in this from the beginning.  If I hadn’t gone to the neighborhood clinic for what I thought was poison ivy, I probably would not been referred to Dr. Rakkhit (the “good doctor”).  :)  Dr. Rakkhit did his fellowship at MD Anderson and knows Dr. O’Brien.  Without his recommendation, it would have been very difficult to get an appointment with the head of the Leukemia Department.  Dr. Rakkhit also went to school with Dr. Shah, my transplant doctor.  His connections have put me in the best place possible. 

So while the expenses of this journey of ours can be staggering at times, God has gotten us this far, and He will provide for the rest. 

“And my God will supply all your needs

according to His riches in glory in Christ Jesus.” 

Philippians 4:19

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