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.

Is Campath my Path?

During the holidays, Paul and I both took some time off from research.  For one reason, we needed a mental break.  Secondly, there isn’t much to decide until the donor is found.  However, the last time we met with Dr. O’Brien, the head of the CLL department at MD Anderson, she mentioned that when the time came she was leaning toward Campath as my front line regimen.  So I thought I would resume my research in preparation.  WARNING:  This may be boring.  :)

Campath, also known as alemtuzumab, is a monocolonal antibody that targets an antigen known as CD52, a common antigen (protein) found on B and T cells (part of the body’s immune system) on the surface of mature lymphocytes but not on the stem cells from which these lymphocytes are derived.  When the Campath antibody attaches to the CD52 antigen, the body’s immune system is activated to destroy these targeted cells in the blood and bone marrow.  Since the CD52 antigen is also present on healthy B and T cells, treatment will temporarily weaken the immune system and care must be taken to protect against infection during treatment.

Campath works in an entirely different way from traditional chemotherapy, which kills rapidly dividing cells.  Unfortunately, that includes healthy cells as well as cancerous ones.  Since monoclonal antibodies target only specific cells, they may cause less toxicity to healthy cells.  Monoclonal antibody therapy is usually given only for cancers in which antigens (and the respective antibodies) have already been identified.

Campath has been proven especially useful in cases with p53 deletions (ie. my 17p deletion), which are otherwise resistant to treatment.  Campath is particularly important because it stays active in the body for a long time after it is given, which means it may work longer to prevent GVHD symptoms. 

Possible side effects include 1) a reduction in blood counts (white and red blood cells and platelets), which can increase the risk for infection, anemia and/or bleeding; 2) infusion reactions such as fever, chills, nausea, rash, etc.; and 3) weakening of the immune system that can lead to serious infections.  Less common side effects include cough, muscle pain, poor appetite, mouth sores, headache, numbness or swelling of hands and feet, dizziness, weakness, etc.

Dr. O’Brien also mentioned the possibility of a “mini-transplant,” also referred to as a non-myeloablative or reduced-intensity transplant.  While there is nothing “mini” about the transplant itself, the pre-conditioning regimen is less toxic.  A mini-transplant uses lower, less toxic doses of chemotherapy and/or radiation to prepare the patient for an allogeneic stem cell transplant.  The use of lower doses of anticancer drugs and radiation eliminates some, but not all, of the patient’s bone marrow.  It also reduces the number of cancer cells and suppresses the patient’s immune system to prevent rejection of the transplant.  In a traditional myeloablative transplant, the goal of the conditioning regimen is to kill as many cancer cells as possible and to suppress the immune system of the patient to allow the donor cells to grow.   

With the non-myeloablative transplant, cells from both the donor and the patient may exist in the patient’s body for some time.  Once the cells from the donor begin to engraft, they may cause the GVL (graft vs. leukemia) effect and work to destroy the cancer cells that were not eliminated by the anticancer drugs and/or radiation.  To boost the GVL effect, the patient may be given an injection of the donor’s white blood cells.  This procedure is called a “donor lymphocyte infusion.”

The advantages of non-myeloablative transplants are that they are better tolerated.  The disadvantages are that they rely mainly on the GVL effect. 

The mini-transplant is not without risks.  Some cells in the mixture given to patients also recognize healthy cells, thus triggering an undesired immune response called graft-vs.-host disease (GVHD), in which donor cells recognize the patient's healthy cells as foreign, sometimes resulting in destruction of healthy tissue.  Survival rates among patients who receive a mini-transplant range from 30 percent to 70 percent, depending on the underlying disease, disease stage and whether the patient has other illnesses at the time of treatment.

The use of Campath, or alemtuzumab, following reduced-intensity conditioning and unrelated donor conventional transplantation has been associated with durable engraftment and significant reduction in GVHD but at the cost of impaired immune reconstitution and increased infectious complications.

For more information, as well as an interesting read, on stem cell transplants, visit the CLL Topics blog listed below.

http://updates.clltopics.org/1323-stem-cell-transplants-are-they-worth-it-part-i

With regard to donor updates, I spoke to my MUD Coordinator and learned a few new things.  First, Paul’s HLA info came in and he was very disappointed not to be my match.  I told him that he IS my match…just not for my bone marrow!  F-42 has removed herself from the list.  M-22 is again unavailable.  A new M-24 who was also previously unavailable is now available and being sent a request.  The best news was that a new M-47 has already had his blood test and MD Anderson has received it for testing.  More on that in about a week.  We still have the first donor option, F-22/13 of 14/with the DP antibody issue.  I did learn that I have numerous DP antibodies, so the likelihood of finding a donor with no antibody issues is minimal.  The “fix” for that is either Rituxan and/or plasmapheresis,

Plasmapheresis is a process in which the fluid part of the blood, called plasma, is removed from blood cells by a device known as a cell separator.  The separator works either by passing the blood at high speed to separate the cells from the fluid or by passing the blood through a membrane with pores so small that only the fluid part of the blood can pass through. The cells are returned to the person undergoing treatment, while the plasma, which contains the antibodies, is discarded and replaced with other fluids.   Medication to keep the blood from clotting (an anticoagulant) is given through a vein during the procedure.

So for now, the wait continues.  My pain meds are keeping me at a fairly even keel, with only occasional increases in intensity.  I still get tired and need my daily nap.  I still push myself too much some days and then regret it the next….  I am trying to incorporate a little work to keep my brain occupied with something other than this and to see if a bit of extra income might come our way.  I enjoy the kids and grandkids as often as possible.  And I stay more and more in His word and before the throne. 

I truly believe that God is in this and will bring me through. 

“For it is God who is at work in you, both to will and to work for His good pleasure.” Philippians 2:13

Donor Update

Several have asked for a donor update and explanation of how the “one” is chosen.  First of all, the second possible donor, who was scheduled to do their blood test on December 21, cancelled.  It could have been holiday timing or a change of mind.  However, I learned today that it was a 22 year-old male, which fits in the “best option” category.  My MUD (Matched Unrelated Donor) Coordinator said that while male transplant patients do not always fair well with female donors, female transplant patients often do the best with a male donor.  I think it may have something to do with the antibodies that women make with each pregnancy.  So my MUD Coordinator is going to make a second request to M-22 (male, 22 years).

Another 10 of 10, who was previously unavailable until after December, is now noted in the system as available.  That person is a 23 year-old male.  My coordinator is going to send a request for a blood sample from him as well.  (Everyone she is asking for blood samples are already a 10 of 10 match according to their mouth swab.  MD Anderson does further testing to determine more extensive matching, possible antigens, etc.)

If neither M-22 nor M-23 responds, there is a M-53 and a F-42 next on the list, and a M-31 and F-21 from overseas.

So why can’t we just go with the F-22 who is 13 of 14 with the antibody/antigen issue?  It goes back to engraftment.  If the transplant doesn’t take, my organs can simply shut down.  Because my disease is stable for the time being, they are able to continue the search for the BEST match.  We have read many articles and blogs of folks who did not fair well post transplant, so it is important to eliminate as many obstacles as possible.  The better the match, the better my odds of coming out of this thing alive and well.

Our prayer this week is that both M-22 and M-23 would respond so MD Anderson can do the necessary tests, with the hope that one of them might be the “one.”  Thank you for praying with us.

Waiting expectantly…

Tamara

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