The Dawning of a New Year

God can show us so much through His creation.  While watching the first sunrise of 2012 from our porch in the country, the sun’s rays stretched up from the horizon, reaching toward the heavens to illumine our world.   Those rays give us the hope of a bright new day.

Many are looking for rays of hope during the coming year.  2011 has been laid to rest with its blessings and its challenges.  2012 is still a blank slate, awaiting its text.  Some are hoping for new job opportunities.  Others are praying for renewed relationships.  Many struggle with finances.  Countless just need direction.  For me, as well as many others, the hope is related to our health.  And for all of us, there is a period of waiting.

These last few months brought great change to our lives with greater change coming.  We are still waiting for the best donor match for my transplant.  We wait to see how quickly my disease progresses.  We wait to see when the transplant process will begin.  We wait to see how my body will respond. 

Whether you are waiting for a job, for guidance, or for a transplant, the waiting itself can be difficult.  The weight of waiting can be heavy.  So I went to the source of all comfort, of all guidance.  May these verses help light your way.

My 2012 Verse:  “I remain confident of this:  I will see the goodness of the LORD in the land of the living.  Wait for the LORD; be strong, and let your heart take courage; wait for the LORD!”  

Psalm 27:13-14

“But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.”  Isaiah 40:31

"I am waiting for the Lord, my soul is waiting for Him, and my hope is in His Word." Psalms 130:5 

"When I was waiting quietly for the Lord, His heart was turned to me, and He gave ear to my cry." Psalms 40:1

"Now may the God who gives comfort and strength in waiting make you of the same mind with one another in harmony with Christ Jesus…" Romans 15:5

“Truly my soul waiteth upon God: from Him cometh my salvation.”  Psalm 62:1

“My soul, wait in silence for God only, for my hope is from Him.”  Psalm 62:5

“But as for me, I will watch expectantly for the LORD; I will wait for the God of my salvation.  My God will hear me.”  Micah 7:7

“Let integrity and uprightness preserve me; for I wait on thee.”  Psalm 25:21

“The LORD is good unto them that wait for Him, to the soul that seeketh Him.”  Lamentations 3:25

“For since the beginning of the world men have not heard, nor perceived by the ear, neither hath the eye seen, O God, beside thee, what He hath prepared for him that waiteth for Him.”  Isaiah 64:4

“Our soul waits for the Lord; He is our help and our shield.  For our heart is glad in Him because we trust in His holy name.  Let your steadfast love, O Lord, be upon us, even as we hope in you.”  Psalm 33:20-22

“May you be strengthened with all power, according to His glorious might, for all endurance and patience with joy.”  Colossians 1:11

The Gift

In the Christmas season, more than any other, we strive to find the perfect gift for those we love.  We wish we could find that one thing that would bring utter joy and delight, something that would never be forgotten. 

Everyone has his or her own way of shopping.  Some stay in the Christmas mindset all year, finding gifts in April or June that they tuck away until December.  Others are all about finding the best deals.  There are those who actually enjoy the competitive shopping of Black Friday, while others avoid the crowds by sticking to the internet.  Many now utilize wish lists, which fairly guarantees that the “right” gift was purchased.  I still prefer surprises.  But that can be a tall order every time. 

This year, we did manage one surprise that turned out to be truly delightful.  We refinished my daughter’s great grandmother’s piano for her family to enjoy.  Hearing their squeals and seeing the joy in their eyes and Granny’s piano back in service was a gift back to us.  But that was a rare opportunity. 

Not many of the gifts that are given really last or remain etched in our minds.  The movies and games, toys and trinkets, gadgets and gizmos while always appreciated tend to fade with time.  What are the gifts that last, that endure, that can make a difference?  What gifts are bigger than the boxes we wrap them in?

It all starts with what Christmas is all about, the gift of our Savior.  God gave up His eternal companionship with His Son for Him to be born of, live among, and die for mankind. 

John 1:1-5  “In the beginning was the Word, and the Word was with God, and the Word was God. He was with God in the beginning. Through him all things were made; without him nothing was made that has been made.  In him was life, and that life was the light of men.  The light shines in the darkness, but the darkness has not understood it.”

Isaiah 9:6  “For unto us a child is born, unto us a son is given: and the government shall be upon his shoulder: and his name shall be called Wonderful, Counselor, The mighty God, The everlasting Father, The Prince of Peace.”

Philippians 2:4-7  “ Your attitude should be the same as that of Christ Jesus: Who, being in very nature God, did not consider equality with God something to be grasped, but made himself nothing, taking the very nature of a servant, being made in human likeness.”

So what are the gifts that cannot be wrapped in pretty paper and ribbons?  The gift of time.  The gift of kindness.  The gifts of love, laughter, forgiveness, humility, patience, and service.  The gift of a smile, a thoughtful word, a tender touch, a knowing look. 

I’m sure that my husband would have enjoyed something other than spending two days in the kitchen with me, but he chose to devote his time to chopping, measuring, shaping, and dipping Christmas goodies and preparing recipes to share with family and friends because he loves me and wanted to give the gift of time together. 

My daughter would probably prefer to play her new piano without interruption, but she will patiently share her knowledge and love of music with her child so that she can love it too.

My granddaughter probably won’t remember her first ride on a ferris wheel, but she will remember cooking with her Tadee, working in the yard, tickles and hugs in the morning, and prayers, stories, and songs at night. 

The two people who have been tested to see if they are a good match for my transplant have chosen to be available to give the gift of healthy cells, the gift of life, to someone they don’t even know.   (We’ll know more results next week.) 

We can focus on what we get or on what we give.  In reality, the gift of giving is the greatest gift you can give yourself.   In giving comes great rewards.   Spend time with people you love.  Enjoy a child.  Value your elders.  Listen to the stories of both.  Look for the beauty in each day, in each person. 

When the paper and bows are thrown away and the tinsel and trimmings are tucked back in their boxes, the gifts that will be remembered are the gifts of you.

Merry Christmas, and may you enjoy the gifts of one another in the New Year.

A Match? Or Everything You Ever Wanted to Know About HLA Typing but was Afraid to Ask!

I spoke with my MUD (Matched Unrelated Donor) Transplant Coordinator this morning, and she had good news and not so good news.  Because the not so good news was difficult to comprehend, I am going to provide some details to HLA typing that might help those who are wanting to more fully understand what all is going on.

The good news was that the person who went in for their blood test last week was not only a 10 out of 10 match but was even better at 13 out of 14.   Some facilities require 6 of 6, 8 of 8, others 10 of 10.  The more markers that match the better the results.  MD Anderson looks for 10 of 10 or better.   So 13 of 14 is really good.

What are these “markers?”  Human Leukocyte Antigen (HLA) typing is used to match patients and donors for bone marrow or cord blood transplants (also called BMT).  HLA are proteins — or markers — found on most cells in your body.  Your immune system uses these markers to recognize which cells belong in your body and which do not.

Several of you have also asked the difference between a bone marrow transplant and a stem cell transplant.  Basically not much except for how they retrieve the stem cells.  Bone Marrow Transplants (BMT) or Stem Cell Transplants are done to restore the body's ability to produce the different cells that make up the blood.  Bone marrow is the spongy tissue inside large bones.  It contains immature stem cells.   Stem cells mature to become red blood cells that carry oxygen, white blood cells that help fight infection, and platelets that help stop bleeding.  In a bone marrow transplant, the donated stem cells are taken from bone marrow.  In a stem cell transplant, the donated stem cells are taken from circulating blood.  Bone marrow donation is a surgical procedure done in a hospital.  The donor is given anesthesia; then a needle is used to remove marrow from the hip bone (similar to a bone marrow biopsy).  Peripheral blood stem cell donation is done in an outpatient setting.  The donor is given medication over several days to increase the number of stem cells in the bloodstream.  Then a needle is inserted into an arm vein to draw out the blood.  The blood passes through a cell separator machine that removes the stem cells.  The rest of the blood is returned immediately to the donor.   This is the now the more common procedure.

The not so good news is where it starts getting confusing.  When mine was tested, they discovered that I have HLA antibodies in the DP (more on this shortly).  The antibodies are similar to the resistance we develop to Chicken Pox after we’ve had it.  That’s a good thing with Chicken Pox.  But if I have a resistance to a part of my donor’s cell makeup, it could inhibit engrafting.  Engraftment is when the donated cells start to grow and make new blood cells.   A close HLA match reduces the risk of a post-transplant complication called graft-versus-host disease (GVHD).  GVHD occurs when the immune cells from the donated marrow (the graft) attack your body (the host).

There are several groups of HLA markers.  MD Anderson primarily looks at A, B, C, DR, and DQ.  My antibodies are on DP, which most facilities don’t even test.  But because MD Anderson looks for the best match at a detailed level, my antibody situation will be a factor to consider.  If this 22 year old female with 13 of 14 matches ends up being the best match available, then there are extra steps that can be taken at time of transplant to help overcome the antibody issue.  For now, they will continue to search for the best match and keep this one on the back burner. 

For more information on HLA typing, here are a couple helpful sites.

 

http://en.wikipedia.org/wiki/Human_leukocyte_antigen     

http://marrow.org/Patient/Transplant_Process/The_Donor_Selection___Transplant_Process.aspx

The lack of a fully matched donor (8/8 matched, i.e., matched at HLA-A, -B, -C, -DRB1) does not preclude transplantation as a possible treatment option, because transplant outcomes are generally better when patients are transplanted earlier in their disease rather than later.

The NMDP (National Marrow Donor Program) therefore recommends not delaying transplant in the hopes of finding a better matched donor later. The NMDP bases this recommendation on a 2007 study of 3,857 transplants demonstrating that 6/8 patients transplanted in an early disease stage do better than fully matched 8/8 patients transplanted in advanced disease stage. [5] Because disease stage at the time of transplant is the only factor under direct control of a physician, an early referral is perhaps the single most important step that can affect survival. (See the NMDP Clinical Fact Sheet on Outcomes in Unrelated Hematopoietic Cell Transplantation for additional data.)

 (Taken from BeTheMatch.org.) 

With that in mind, I am going back to my local oncologist tomorrow, and then we will meet with my transplant doctor on January 2.  The MUD Coordinator will keep the transplant doctor and the head of the CLL department in the loop with regard to possible donors.  The doctors at MD Anderson were very pleased with our proactive approach.  While it is scary to say the least, the potential for long-term survival is greater with this plan. 

I think that this past month of increased fatigue has helped me begin to accept what the next year or so is going to be like.  I am learning my limits, and while I still push them often, I now know how far is far enough.  As I wrote on an earlier post, we continue to prepare.  It doesn’t feel like much sometimes, but it is all I can do right now.  Prepare and pray.  Pray for the right donor.  Pray for the right timing for the transplant.  Pray that the right pre-transplant treatment is chosen.  Pray that my body accepts the transplant.  Pray for no infections.  Pray for Paul and my mother as they provide care for me before, during, and after.  Pray for continued positive attitude.  Pray for peace.

“And the peace of God, which surpasses all understanding,

will guard your hearts and your minds in Christ Jesus.”  

Philippians 4:7

The Weight of the World…and a Possible Donor

How do you carry the weight of the world when extra pounds keep piling on?  As a cancer patient, the fear of the unknown is a daily battle.  As a cancer patient with uncommon components, the unknown is a bit greater.  It is easy to read and quote the Scriptures that talk about laying down our worries and letting our Savior carry us through, but it can be more difficult to actually do it on a moment-by-moment basis. 

As a mother, I worry (no, let’s say that I am mindful, prayerful, and thoughtfully concerned) about each of our children…their relationships, their jobs, their finances, their families, their health.  I am concerned and prayerful for my grandchildren, especially Dana with her failed hearing tests.  As a wife, whatever troubles my husband troubles me…whether it’s his back, his job, or his commitment to make everything right for me.  As a daughter, sister, cousin, aunt, niece, and friend, I pray and follow the medical, emotional, relational, financial, and overall needs of those I love.  There are those dealing with everything from the trivial to the traumatic, from simple to life threatening.  They all matter. 

How do we compartmentalize all that is in our hearts and minds?  How do we carry the load?  How do we lay it down?

In my thoughts this morning, I admitted that I am worried about finding a donor.   And I’m worried about what will actually happen when they do!  It’s scary to consider the reality of going through the transplant process and embracing the variety of possible outcomes.  The last conversation with my Transplant Coordinator revealed that she had sent four requests but no one had yet responded.  Today, she told me that one went in for his/her blood test yesterday and we should have the results by next week.  She said that it looks positive so far, and that once we have a confirmed donor it could take as little as four weeks to move forward with the transplant.  Wow!

It's hard to stay focused when I'm tired.  It’s hard to push myself when I don’t know what tomorrow holds.  Of course, I don’t suppose any of us know what tomorrow holds!  We just take one day at a time, thankful for His daily provision of grace.  I stand with you in prayer for the spoken as well as the unspoken requests on your heart.  Thank you for standing with us as well.

"Come to me, all 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."  Matthew 11:28-30

"Behold, God is my salvation; I will trust, and not be afraid: for the LORD JEHOVAH is my strength and my song; He also is become my salvation."  Isaiah 12:2

"An anxious heart weighs a man down, but a kind word cheers him up."  Proverbs 12:25

“Cast your burden upon the LORD and He will sustain you; He will never allow the righteous to be shaken.”  Psalm 55:22

"So do not worry about tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own."  Matthew 6:34

"God is our refuge and strength, an ever-present help in trouble."  Psalm 46:1

“Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.”  Philippians 4:6

“Indeed, the very hairs of your head are all numbered.  Do not fear; you are more valuable than many sparrows.”  Luke 12:7

“And my God will supply all your needs according to His riches in glory in Christ Jesus.”  

Philippians 4:19

A Shot of Rum

When I was 17, I smoked one, actually only a portion of one, cigarette.  I was mad at my parents about trying to enforce some sort of restriction (parents do that) when I wanted freedom (teenagers want that).  I felt the relaxation from that one indulgence permeate my entire body.  I knew right then that I would never smoke another because that’s why people get addicted to those things!  I also realized that eventually it would take more than just a portion of one cigarette to accomplish the same feeling.  So that was the end of smoking.

Tonight, I had a similar experience with a shot of rum.  I have been so excited to have Paul home taking vacation time this week.  But each day I have had increasing discomfort.  As I am apt to do, I wanted to make the most of each moment…work on projects together, decorate for Christmas together, get our gifts selected and wrapped together, have lovely meals together, and just spend that precious commodity of time…together.  And we have, some.  But mostly, I just don’t feel very well.  I don’t want to take my nap when he’s home.  What was it that I used to say?  “You can sleep when you’re dead!”  Doesn’t seem quite so appropriate anymore.

Anyway (my brother will cringe because I used that segue, but that’s a whole other story), back to the rum.  I have been taking two Motrin PM every night just so I can sleep.  It’s been working fairly well.  But the more tired I get during the day, the worse my nights are.  It sort of feels like what I imagine “restless leg syndrome” must feel like, except all over.  I lay there trying to coax myself into rest to no avail.  Then I feel guilty about feeling bad because I imagine that my mom’s RA, my cousin’s peripheral neuropathy, not to mention my dear husband's back pain, probably feel quite similar.  I, however, can eventually get a bone marrow transplant and feel better…after a while.  They can’t.  Of course, I guess most folks don’t die from RA either.  But I digress.

Back to the rum.  I finally just could not stand it anymore and got up to find something, anything that might help me relax and get some sleep.  So I open the cupboard and pour a shot of rum, warm it up a bit, and sip it down.  I could feel its warmth permeate my entire body.  Then I realized, just like when I was 17, that this is why folks get addicted to this stuff too!  Ugh! 

So what is one to do?  The Transplant Coordinator continues her search for a donor.  And I wait.  I want to wait with dignity, with a smile, with laughter in my voice, with confident hope in my heart.  I want to enjoy every moment with my family and friends.  I have packed and planned tons of fun into this last month of the year not certain what the next will bring.  But it’s difficult to fully embrace each moment when I just don’t have the energy because of the nagging drain of the ache. 

So my prayer request is simple.  Please pray that I can rest without rum, that I can enjoy as many moments as possible, that I will be patient, and that I will be a good girl and take my nap.

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.