SCOREBOARD

     "One day at a time."  That's the advice I get most.  I really try my best to do that.  I wake up in the morning and say, "I feel great.  No chemo today." 
     We checked the crazy blood scoreboard and the final numbers are in.  This game does NOT play by the rules.  It doesn't seem to have any rules.  Anemia - in check!  Blood thickness - in check!  But those darn proteins - the ones that my malignant plasma cells produce.  Those numbers are increasing every time we check.  That indicates that the malignant cells are multiplying.  Just like before.  Just like before chemo.  Almost to the same level as when I was first diagnosed. 
     I just don't quite have a handle on this rare, indolent cancer, yet.  Originally I was told that I could go for years without treatment (well, it took only six months for my first treatment regimen.)  I keep thinking I will be one of those WMers who are blessed with lazy malignant cells.  Well, apparently, mine are moving right along.
     Knowing that those little bad guys are inside my bone marrow - doing their bad stuff and there's not a thing I can do to stop it really gets to me sometime.  Just watch and wait.  Last year it was watch followed by a very short wait.  My mind just won't let that go sometimes.  When am I going to have to clear out my calendar for treatment again?  Not today.  "I feel great.  No chemo today."
     "Eat more green vegetables."  "Lower your body's PH level."  "Try essential oils."  "Think positive thoughts." "Stop drinking diet coke!"  OK, OK, OK!  Thank you for the advice, but really?
     "Have faith."   I DO have faith!  I have complete faith that God will never leave me or forsake me.  I have complete faith that he could HEAL me if that was His plan for me.  So far, it does not look as if that is His plan.  So, I have faith that He will be with me every step of the way with this crazy blood journey. 
     "Be brave."  "Be an example to others."  Sometimes I just don't feel brave.  Sometimes I feel like a lousy example.  Sometimes I tell my husband, "I don't like this.  I don't want to have cancer any more."  Can't I just shout to the top of my lungs "CANCER SUCKS!"
     Then I see the photo of my friend, Susan, come up on my facebook newsfeed.  Approaching the end of a long battle with cancer that has spread throughout her body.  There she was in the photo.  Smiling.  On her birthday.  Probably her last birthday on earth.  Yes, Susan, Cancer sucks.  You are so brave.  I am a whiner. 

     Forgive me, Lord.  Help me to trust in your plan for my life. 

Comfort me with the realization that you will be with me

wherever my path takes me. 

 And, those little malignant cells - could you just shut them down? 

That would be really awesome!  As for tonight, I feel great.  No chemo tomorrow!

One day at a time.

"Don 't worry about anything;

instead, pray about everything.

Tell God what you need,

and thank him for all he has done."

Philippians 4: 6-7 NLT

A VERY MERRY UNBIRTHDAY TO ME

"     What do you say about the first anniversary of one of the scariest and most miserable days of your life?  At this time last year, I had received my first of 18 injections of Velcade.  (They told me it would be a quick and simple injection.  They failed to tell me that it would be administered in my TUMMY!)  A week later, it was time for the first of nine Rituxan infusions.  I had been given all the warnings about side effects.  I just KNEW that the possibilities were for someone else - not me. 
     Silly me!  October 11, 2013.  Lab work done, Stevie at my side, and plenty to keep me occupied during the infusion, I was ready to begin the process of beating down the cancer in my bone marrow.  It was causing me some problems and things were about to get serious.  Ain't nobody got time for that!  The I.V. was inserted (a huge victory for this needle-phobic who ironically had blood cancer!)  I had given my explanation of Waldenstrom's macroglobulinemia to the oncology nurses, taught them how to spell it, pronounce it, and found that only one had ever treated a WM patient before today.  Lovely!  A scared needle-phobic with a disease that nobody has ever even heard of before!  Downhill from here.  Right?  Oh boy!  Was I wrong.  The nurse loaded me up with Tylenol to ward off the fever and chills, and steroids - Benadryl to prevent allergic reactions, but my body did not like Rituxan, not one bit!
     It was a very, very long and miserable day.  Because of the allergic reactions, and the starts and stops, only 1/2 of the drug was given during my 8 hour infusion.  I was loaded with so much Benadryl and steriods that I was totally wired!  No rest for me.  I watched every single drip through the tube into my arm.  My doctor and nurse stayed with me after hours to try to give me as much Rituxan as possible.  Finally, my doctor said that it was time to end the infusion - my body just couldn't take any more.  I was devastated to learn that an additional infusion would be added at the end of my treatment regimen to give me the correct amount of Rituxan.  So, late in the evening, after the infusion center had actually closed, Steve and went home with a new understanding of what the next six months would hold. 
     But that was then.  This is now.  Rituxan and Velcade did the trick.  I feel great!  (It's a funny thing, sometimes you don't even know that you are sick until you get better.)  No more anemia.  IgM protein in check.  WM and I are living together under "friendly" conditions.  (That's what my oncologist says, isn't that wierd?)  Next lab work will happen in three weeks.  We'll check the scoreboard then and make sure that my indolent cancer is still sleeping.  Until then, I am enjoying my "cancer vacation."  Three months at a time with no oncology visits (and no needles!)
     Today, I thank God for Rituxan, and the love-hate relationship that we have.  I am thankful that God equips some of his children to think scientifically and to understand the hidden secrets of the human body.  I honor the cancer fighters before me who participated in clinical trials to help researchers find appropriate drugs that are now available to help me.  WM, like so many other cancers, is not-yet-curable.  More research is needed.  WM is an orphan disease which means that little research funds are available.  WM has characteristics of both Multiple Myeloma (plasma cancer) and Non-Hodgkins Lymphoma (cancer of the lymph system.)  I classify myself under the Non-Hodgkins Lymphoma umbrella because there are not categories for a "lymphoplasmacytic" lymphoma like mine.   Today, I am proud and grateful that my friends and family have helped me raise nearly $3,500 for The Leukemia and Lymphoma Society.  Some of the research that this money will fund will be used to develop treatments that will help me with my crazy blood disease. 
     On my very-merry unbirthday, the anniversary of my first Rituxan infusion, I would be most honored if you would give to this worthy cause.  No other gift would mean as much to me. 


A click of the "Team Lollar" logo above this post will take you to the "Light The Night Walk" website and you can quickly donate to The Leukemia and Lymphoma Society. That would be the best very-merry unbirthday present ever!  Here's to research!  Here's to cures!

"In everything give thanks, for this is the will of God

in Christ Jesus concerning you."

1 Thessalonians 5: 18

DOING THE BEST WE CAN

        I have come to the conclusion that very little in my life has gone the way I planned.  When Steve and I married over 38 years ago, a large family never crossed our minds.  We were excited about the birth of our first baby.  Although unplanned, little April Kathleen was the joy of our young lives and continues to be to this day.  But she did not remain an only child for long.  Just when April started sleeping through the night, I realized something was wrong.  What I suspected could not possibly be!  I was too tired.  I hadn't slept in months.  I was not ready to be a mom again!  But, God had other plans.   When April was only 15 months old, Natalie Brooke found her place into our hearts, and our tiny toddler became a big sister.  God gave us two precious daughters.  I have loved them both - from the first butterfly flutter in my belly, through childhood, the terrible teens.  Steve and I are blessed that April and Natalie remain near and dear to us.  They are parts of us - from now through eternity.
        As I said, a large family never crossed our minds.  I will re-state my earlier observation.  Very little in my life has gone the way I planned.  Throughout the past 17 years, our family has grown one by one by one.  And sometimes even by twos.  As of today, the group pictured above is the real TeamLollar.  Our family.  Our village.  The Steve and Kathy Lollar family does not look like anything we expected.  Our beautiful daughters have delighted us with the births of five beautiful grandchildren, Cameron Gregory, Aubreigh Dawn, Joel Steven, Brennon Reid, and Kielyn Rae. 
     But, there's more!  Like most daughters, our girls have chosen partners for their life journeys.  Throughout the years, circumstances have changed which have brought a crew of children into our lives.  Yours, mine, and ours children.  Children who have been a part of our physical families for a time, and have now moved on, but have never moved out of our hearts.  Once a Lollar grand, always a Lollar grand.  April and Tony have given us two more little loves, Madison and Trenton.  Natalie and Pete introduced us to Jordan just this weekend.  Then there are Brittany, Michael Marie and Trestin, children who will never leave our hearts.
     I tell you all of that background information to make this point.  Nothing in my life has been what I planned.  The older I get, the more I realize that I have very little say in what happens in my own life.  Lately, I have come to terms with that reality.  I have even learned to embrace my helplessness and become bold with faith that God will bring me through anything that is ahead of me.  My unexpected large family has brought many trials, but the blessings have outweighed them ten-fold.  I planned to be a pop-star diva of the Barbra Streisand genre.  Instead, my gift was found in teaching children - thousands of them - and their children.  Sharing music with so many has brought me untold happiness.   I never thought twice about my health and assumed I would always wear size 6 jeans and eat all I wanted.  That all changed!  I never spoke the "C" word aloud.  I never wanted to say it because it did not belong to me, it belonged to somebody else.  I have learned that you can ignore and deny all you want to, but with health issues, you'd better know your body and respect it enough to find answers. 
       For nearly two years (I can't believe how quickly the time has passed) I have been aware that the "C" word is a part of me.  Who knows how long I had it before diagnosis.  During this time, I have lost 4 friends to cancer (one just last week,) and at least ten others have been diagnosed.  You understand that, don't you?  I'll bet the same is happening in your circle of friends and family.  An unplanned, unwanted, dreaded disease.  I am one of the blessed ones.  I have responded well to treatment and am doing very well.  I never, ever take that for granted.  I think of Kevin, Tim, Lynn, and Shayne.  Gone too soon.  I think of Pam, Billie, Sarah, Susan, Beth, Loretta, Bonnie, and so many others.  Too many to name.  I am blessed.  I am grateful. 
     I have come to the conclusion that very little in my life has gone the way I planned.  My small family has turned into a beautiful blend of God's precious children.  My time in the spotlight has been spent displaying the unique talents of my students and encouraging them to blossom.  My time of illness has taught me to appreciate life, to trust God, to ask for help, and to just let things go.  Things that seemed so important before fade into the background.  It's people who are important, not things.  Why do we all say, "where did the time go?" "I just blinked and my child was grown!" "My body is old, but my mind is young, how did the past 57 years fly by so fast?"  Slow down.  Love people.  Look over their mistakes.  Forgive their faults.  Forgive yourself.  Be an encourager.  Be a listener.  Be a giver.  Accept people as they are.  After all, very little in their lives have gone the way they planned.  We are all just doing the best we can. 

"But from everlasting to everlasting, the Lord's love is with those who fear him, and his righteousness with their children's children."

Psalm 103:17

"Direct your children onto the right path, and when they are older, they will not leave it."

Proverbs 22: 6

"For the foolishness of God is wiser than man's wisdom, and the weakness of God is stronger than man's strength."

1 Corinthians 1: 25

"For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope."

Jeremiah 29: 11



  
    

THIS IS HOW WE ROLL

     My sweet husband is in surgery and it is my turn to wait. It feels quite different on this side of the operating room. I can't say that I like it. Being a caregiver is going to be a change for me. I have grown very dependent upon Steve over the past 18 months. From foot surgery through chemotherapy and hip surgery, he has been there cheering me on every slow and painful step along the way. The tables have turned. In a couple of hours, I will be the home nurse, the chauffeur, the physical therapy assistant and all the rest. This man has never had surgery until today. He is rarely even sick. He has been blessed with good health. Total dependence will be new for him. Everyone warns me that men are not good patients. We'll see, but I believe that this man will prove them wrong.  

     A few minutes ago, the surgical team rolled Steve down the hall toward the operating room. I grinned as I heard him sing, "Rollin,' Rollin', Rollin'".  One of the nurses asked, "Are you surprised that he is singing the Gunsmoke theme on the way to surgery?"  I answered, "Not at all.  I know him. This is how we roll."  

     Thank you, God, for giving me a healthy husband with a servant's heart. Thank you for his humor and his positive attitude.  I ask you to bless him right now throughout this procedure. I pray that Steve will heal quickly with minimal pain. Teach me to be the kind of caregiver he needs.  I look forward to the day he can walk without difficulty.  Thank you for loving us.  Thank you for being true to your promises. I claim your promise that you will never leave us or forsake us.  I invite you to walk with us through these days of recovery. 

When you walk, your steps will not be impeded; and if you stumble, you will not fall.  

Proverbs 4: 12

IT'S MY BIRTHDAY - HIP, HIP, HOORAY!

     It happened nine weeks ago.  Lying in pain on the kitchen floor I thought to myself, "YOU'VE GOT TO BE KIDDING!  THIS CAN'T HAVE JUST HAPPENED!  HAVEN'T I BEEN THROUGH ENOUGH?"  That evening, lying in a hospital bed, I asked my surgeon just how long my recovery from the inevitable hip surgery would take.  His answer was ten weeks.  That was not the answer I wanted, but that was the answer I got.  My mind started calculating just what that number meant to me.   I set a goal for myself.  The goal for recovery would be my birthday!  (OK, it was only nine weeks until my next birthday, but surely I could beat the odds.) 
    I must say that my 57th year has been the most painful and difficult of my entire life.   On March 7, I completed six months of chemotherapy; but my celebration was delayed by a fall on March 8 that left me with a titanium rod to strengthen my broken hip.  Hours of physical therapy have improved my weakened muscles, but complete strength is still down the road a bit.  It has been a long, hard journey to this point, but guess what?  This birthday weekend has been the best of my life!  I have never been more grateful to walk, more happy to bend down and plant flowers, more aware of my increased energy level, and more amazed to have improved blood flowing through my veins than today.  The reality of my own mortality has changed me.  A time of helplessness and dependence has made me a different person.  Things that used to be important to me, are no longer of value.  Other things that I hardly noticed before, have now become priorities. 
     You have probably heard the saying, "what does not kill you will make you stronger."  I wish that were not a true statement, but I testify that it is.  If I had my way, God would just give me all the understanding and insight that I would ever need.  He would just wave his omipotent hand, and I would be fully mature and provided with all knowlege.  But, I guess that's why HE is God and I am not!  That's just now how growing in his glory works. 
    Don't get me wrong, I wish that I never had to face another moment of suffering in my life.  But of course, I am not naive.  Cancer will  continue.  Financial difficulties will continue.  Family concerns will continue.  Violence and evil in the world will continue and will have an effect on my life.  But, I know this for sure:  through suffering, I will change; I will grow; I will grow nearer to God.  I will have complete assurance that the God who created me will never leave me or forsake me.  I will look back on future trials and find that God has worked them out for my good. 
     Steve and I have a short reprieve and then we face another surgery.  This time, I will be the caregiver.  Foot surgery will require four weeks in a cast followed by two weeks in a boot for a man who has rarely been sick a day in his life (gratefully.)  So, we are getting ready for the next part of the journey.  We don't want to do it, but we know that it is necessary.  I pray that Steve will experience some of the same touches of the Holy Spirit and the strength of Jesus Christ during his recovery as I have during mine. 
     Our next goal is Steve's birthday.  On his birthday, he should be out of the cast and into a walking boot.  That will be a good day.  We are also looking forward to October 25, when we will walk with TeamLollar in Austin, Texas at the Light The Night Walk for the Leukemia and Lymphoma Society.  We will walk for research and help for blood cancer patients.  But we will also just be grateful that we can walk!  If you'd like to walk with TeamLollar or help us reach our fundraising goal, you can reach our team page by using this link:

LINK TO TEAMLOLLAR PAGE - LIGHT THE NIGHT WALK

Hip, Hip, Hooray!

"Dear friends, do not be surprised at the painful trials you are suffering, as though something strange were happening to you.  But rejoice that you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed."

1 Peter 4: 12-13

"Consider it pure joy, my brothers, when you face trials of many kinds, because you know thate the testing of your faith develops perseverance.  Perseverance must finish its work so that you may be mature and complete, not lacking anything."

James 1: 2-4

"A season of suffering is a small assignment when compared to the reward.  Rather than begrudge your problem, explore it.  Ponder it.  And most of all, use it.  Use it to the glory of God."

Max Lucado

"The dominant characteristic of an authentic spiritual life is the gratitude that flows from trust - not only for all the gifts that I receive from God, but gratitude for all the suffering.  Because in that purifying experience, suffering has often been the shortest path to intimacy with God."

Brennan Manning



RECOVERY, 2014

     Four weeks ago today, I traded in my boxing gloves for combat boots!  (Thank you, Loretta Walker, for those appropriate words.) 


     2013 was a difficult year for the Lollar family.  We welcomed 2014 with the hopes of a better year.  We are still waiting for that to happen,  but we believe that better days are just around the corner. 


     On Friday, March 7, I completed my six month chemotherapy regimen.  But the long anticipated reprieve did not happen.  On Saturday, March 8, I fell and broke my hip.  WHO DOES THAT?  Over and over in my mind, I have questioned this.  No way!  How could this possibly be right?  I still don't have the answer to that one, but I have made a few observations and have gleaned some snippets of wisdom along the way.  I will share a few thoughts with you. 

• CLOSE THE DISHWASHER DOOR!  (It just might be a warning from the Holy Spirit.)  Have you ever just had a hunch?  In your gut?  And you didn't know why?  I can remember several times that this has happened to me throughout my lifetime.  There was the time, over 25 years ago, that I walked up to my home to find the door knocked in.  As I angrily stepped toward the threshold to view the damage from an apparent burglary, my feet stopped as if I had walked into a concrete wall.  I turned and ran, got into my car, and went to a friend's house.  When we returned with the police, my microwave was sitting on the ground just inches from where I had stood.  I have carried that moment with me for most of my adult life, wondering what could have caused that feeling to come over me.  Now I know............ it was the prompting of the Holy Spirit, one of the ways that God communicates with His children.  I am so glad that I heeded the warning then, but why didn't I learn my lesson?  I don't know how many times, I have left that dishwasher door open.  I don't know how many times I have thought to myself, "That is really dangerous.  Someone could trip and hurt themselves."  I had warning after warning, feeling after feeling, and I DID NOT HEED THE WARNING.  It was nobody's fault but my own.  I have learned a really hard lesson.  I pray that I have learned it well and that I will be aware of future promptings of the Spirit within me. 

"But the Helper, the Holy Spirit, whom the Father will send in My name,

He will teach you all things, and bring to your remembrance all that I said to you."

John 14: 26

"Your ears shall hear a word behind you, saying,

'This is the way, walk in it,'

whenever you turn to the right hand

or whenever you turn to the left."

Isaiah 30: 21

• DON'T GO INTO DEEP WATER WITHOUT A BUDDY.  I cannot imagine what I would have done if I had been alone that Saturday morning.  My sweet Stevie heard my blood curdling screams and came to my rescue.  Then came my family.  Then, the doctors and nurses and surgeons and physical therapists and x-ray technicians and lab technicians, and so on and so on.  Then came the friends.  One after another.  Bringing flowers, food, cards, words of encouragement, words of healing and strength. Prayer warriors lifting me up in prayer.  I felt the power and comfort.  Phone calls and text messages from little piano students checking on "Ms. Kathy."   I am a giver, a doer, an organizer, a fixer.  Being in need was a new experience for me.  Fortunately, I had gone through 56 years of life without learning about complete helplessness.  I now know that when you are in need, you need an army of supporters.  I don't believe that God ever intended for us to go through life alone.  It's just too hard!  We need each other.  I am especially humbled by the complete selflessness that my husband has demonstrated during this month.  He has been my rock of strength through the most trying time of my life.  He tells me that if the table was turned, I would do the same for him.  Well, of course I would, but I hope I never have to.  HUMILITY.  PATIENCE.  TRUST.  I now understand these concepts in a deeper way. 

"Bear one another's burdens, and so fulfill the law of Christ."

Galatians 6: 2

"So whatever you wish that others would do to you,

do also to them,

for this is the Law and the Prophets."

Matthew 7:12

• "THEY ARE WEAK, BUT HE IS STRONG."  You know the song..... "Jesus loves me, this I know, for the Bible tells me so."  Even the youngest of us knows it.  But do we REALLY believe it?  I am believing these words more and more each day.  Perhaps that is the lesson God wants me to learn through this experience.  Here is what I know for sure.  I experienced a terrifying fall.  I lay on the floor in shock and in pain.  The first sounds I uttered were a call for help from Steve.  The next words I spoke were, "I trust you, Lord.  I trust you.  Help me."   In the emergency room, surgery, recovery, the Holy Spirit brought me constant companionship and comfort.  The day after surgery, a physical therapist expected me to walk!  Really?  Walk?  I was so frightened.  I prayed, "Give me the strength of Jesus."  I was able to take two steps.  The next day, the same prayer.  I walked out the hospital room door and a few steps into the hallway.  Day after day.  Prayer after prayer.  Step after step.   I have been blessed with strength and healing - not just for my body, but for my spirit.  I am convinced of the truth of these words from scripture:

"Be strong and courageous.

Do not be afraid or terrified because of them,

for the Lord your God goes with you;

he will never leave you nor forsake you."

"Deuteronomy 31: 6





""When the righteous cry for help,

the Lord hears and delivers them out of all their troubles."

Psalm 34: 17

     Now, I put away the combat boots and trade them in for a nice pair of Nike's.   The next four to six weeks will be full of physical therapy.  I am learning to appreciate exercise.  Perhaps even sweat!  The boxing gloves have to stay nearby, because cancer is still a reality for me.  Now that chemotherapy has ended, the next few months will be spent tracking numbers in the blood tests and even a scary bone marrow biopsy.  My prayer is that my condition will respond so well to the recent treatment that the malignancy remains in check for a long, long time.  I look forward to better days ahead, and I have the trust that my God will hold me with his righteous right hand through the good and the bad. 

"So do not fear, for I am with you;

do not be dismayed, for I am your God.

I will strengthen you and help you;

I will uphold you with my righteous right hand."

Isaiah 41: 10

"I have told you these things, so that in me you may have peace.

In this world you will have trouble.

But take heart!  I have overcome the world."

John 16: 33





I'VE FALLEN AND I CAN'T GET UP

     So here is the story. On cloud nine from completing chemo the day before, I enjoyed a quiet morning with coffee, music, doxies, and reading.  Before me was the prospect of an entire week of making my own agenda, doing exactly what I wanted. Visions of spring cleaning, preparing the yard for spring, quality time with my family, and a good book. I went to the kitchen to fix breakfast. After opening the dishwasher door to get out a pan, I was sidetracked by my doggie - peeing on the floor, no less.  I went to the living room to clean up the mess and put him out the back door. I turned around to enter the kitchen forgetting about the open dishwasher door. I flew across the open door and landed with the full force of my body an my ceramic tile floor, directly on the left hip. Excruciating pain and terror. On the floor unable to move. So grateful that my sweet husband was at home. We tried for a half hour to get me off the floor, but to no avail.  My daughter's fiancée  arrived and carried me to the car  (no easy task!). It was then that I knew that my injury was severe and that we should have called EMS.
     If you are waiting for my revelation as to why this happened to me,  I must disappoint you. I have given every ounce of courage and faith be a good cancer patient, to accept the constant poking, prodding and drugs that medical professionals administer while wearing protective clothing.  People incorrectly quote a scripture by saying that God won't give you more than you can handle.
1 Corinthians 10:13 says, "no temptation has overtaken you except what is common to mankind. And God is faithful; he will not let you be tempted more than you can bear.  But when you are tempted, he will also provide a way out so that you can endure it."  Of course, life brings us more health problems, financial problems, family problems, social problems, than we can handle. If WE could handle all that life throws our way, we would not need to depend upon GOD.  God's promise to his children is that he will meet us in our circumstances of life and carry us through.
     I am clinging to the scripture from 2 Corinthians 5:7. "For we walk by faith, not by sight."  I am lying flat on my back unable to move, much less walk. Being in this situation is more than painful, it is terrifying. On occasion, the enemy tries to take control of my mind with overwhelming panic, self pity, and depression. I just tell him to leave me alone because I am a child of The Lord Jesus Christ and he can't have me. My faith does not alleviate the pain, it does not mend my broken bone, but it guards me from spirit damage. The tears still come, the regret of that moment of distraction does not fade, but my trust in my Savior who has promised never to leave me or forsake me never waivers.

GUESS WHO COMPLETED CHEMO TODAY.........

THIS GIRL! 

Six months of cancer treatment - done!  Time will tell if and when additional treatment will be needed, but for now, I will go return to monthly labs to keep an eye on things. After treatment today, Steve and I hosted an ice cream party for the staff and patients. It was a fun way to say "thank you."  Here are a few pictures of our little celebration today with some of my favorite people.  Oncology professionals and cancer supporters / caregivers cannot be thanked enough.  The folks at Texas Oncology - West Texas Cancer Center treated me like a queen throughout this entire scary process. I am grateful for each of them.  My sweet Stevie spent countless hours sitting with me during treatments and taking care of me at home. And to my precious friend, Dr. H. Bailey Stone, thank you for reminding me of the promise of God found in Deuteronomy 31:6.

Be strong and courageous.  Do not be afraid or terrified because of them, for the LORD your God goes with you;  he will never leave you nor forsake you.  

NO NEED FOR MASCARA NOW, LYNNE

My friend died today. My special cancer fighting friend who sent me messages of encouragement even though she was in excruciating pain as a result of metastatic breast cancer. I am hurting. I will miss her. She gave me hope and comfort. I promised her that when her time came, I would rejoice with her. I am, but through tears. Losing a friend to cancer is different when you, too, have cancer. Will I be that same inspiration to others?  Will I fight as bravely? What will it be like on the other side?   I am smiling through my tears.  Confusing emotions.

Lynne Norwood was a classy lady who loved The Lord and served Him through teaching children. She remained a teacher as I became her student in my quest to learn how to live with cancer. I would like to share our facebook chats. 

Ocober 4, 2013. As I anxiously awaited my first chemo treatment, I received this word from Lynne:

"I am thinking of you right this minute and know your fear. God will give you the peace, comfort, strength and guidance that He gives me everyday. Calling His name will get you through even the roughest of days."

October 24, 2013. I posted a "funny" story about my rare disease and the reactions I get from medical folks when they hear that I am a Waldenstrom's patient. Lynne responded with this:  "I so feel for you.  Every time I hear a doctor or nurse say, 'I've never seen that before,' I want to scream and then I think I should get a prize. Let me know if you find a remedy for those eyes swelling. It's heck trying to put on mascara!"

December 31, 2013. After I posted about my most difficult Rituxan infusion experience, Lynne writes from her room at M.D. Anderson Cancer center:  "Kathy, I continue to ask God to meet the needs that only He knows you have.  You are in my prayers every day. Although all cancer patients experience different things, we can count on The Lord to give us peace, comfort, strength and guidance specific to our affliction. I am in the hospital at MDA. They are taking me off the clinical trial as I have been very ill, and it is no longer working as it should. I don't know what the turnout will be, but I am continuing the fight.  I know the ultimate result, and for that I am rejoicing.  I pray that your next treatment is much easier on you." 

My response to Lynne:  "Lynne, you are such an inspiration to me.  When the time comes, I will rejoice for you. Strange to think that way, isn't it?  But how true. If we only knew what lies ahead. What a day that will be!  If you get there before me, save me a place. I love you dearly ."

My last message from Lynne:  "I feel sure you already have a place secured. Love you,"

Fly to Jesus, sweet friend. Enjoy your new body; free from cancer, free from fear, free from death. Save me a place. I will see you again (and we won't need mascara!)

"He will wipe every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away."  

Revelation 21: 4

"Precious in the sight of The Lord is the death of his saints."  Psalm 116: 15. 

THIS IS SHELL DAMAGE, NOT SPIRIT DAMAGE

     "Five hundred twenty-five thousand six hundred minutes.....Five hundred twenty-five thousand moments so dear.  Five hundred twenty-five thousand six hundred minutes; How do you measure, measure a year?" (from "Seasons of Love" lyrics from the Broadway musical "Rent.") 
     As difficult as it is for me to believe, it has been exactly one year since I learned of my cancer diagnosis.  Five hundred twenty-five thousand six hundred minutes living with the knowledge of malignant cells flowing in my bloodstream.  On this anniversary, I feel like I should summarize my year - in some way to bring things to a general thought that would make it all make sense.  This is a difficult task because the year has been a whirlwind - full of random, unplanned emotional upheavals filled with confusion / logic; panic / peace; anger / acceptance. 
     I have been blessed by the most amazing friends and family who have cheered me on and encouraged me as I travelled this unwanted road.  One such cheerleader is my "bestie" from high school.  I will not say her name, because she generally wishes to remain in cognito, so I will honor her anonymity.  But this "girl after my own heart" sent me words that have stayed with me every single day throughout my journey.  She told me of her own encounter with God during a personal health crisis.  While she was in an ICU bed, unable to move or speak, the Spirit of God spoke directly to her spirit.  She quotes the message:  "Don't panic.  What you're experiencing is only shell damage.  Your spirit is much larger than your body and it is strong and bright and filled with my Spirit.  I created your spirit and poured it into your body shell."  She tells me that she instantly was overwhelmed with comfort and peace and the understanding that what we have to guard against is not "Shell damage," but "SPIRIT DAMAGE."  She says that the panic left her as God helped her to guard her spirit while she gave her body time to heal.
     If there is any conclusion I can make about this first year of my cancer survivor life, it has to be exactly that.  My shell has taken a beating.  It has been poked and prodded and tested and filled with drugs.  My shell has experienced physical reactions that I never even dreamed of.  But my spirit - that's a different story.  The enemy has tried his best to rob my spirit of joy, but my Savior is much bigger than the enemy.  As my shell ached, my spirit soared.  When my shell could not get off the couch, my spirit danced and sang in worship.  As my shell was warmed with fever, my spirit burned with Holy Spirit fire.  When my shell reacted to unfamiliar medical situations with fear and trembling, my spirit said, "Lord, I trust you" and He answered with peace and comfort.  God is using this time to transform my spirit into the likeness of His Spirit, and what could be better than that? 

    

Holy Father, the Creator of this shell they call "Kathy,"

my body is your temple,

use it to your glory.

Let my spirit shine with your love and transform into your likeness.

Use my journey to prepare me for the day that you take me to eternity to see you face to face.

Until then, I trust you.

"But whenever someone turns to the Lord, the veil is taken away.

For the Lord is the Spirit, and wherever the Spirit of the Lord is, there is freedom.

So all of us who have had that veil removed can see and reflect the glory of the Lord.

And the Lord - who is the Spirit - makes us more and more like him as we are changed into his glorious image."  (2 Corinthians 3: 16 - 18 NLT)

"That is why we never give up.  Though our bodies are dying, our spirits are being renewed every day.  For our present troubles are small and won't last very long.  Yet they produce for us a glory that vastly outweighs them and won't last forever.  So we don't look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen.  For the things we see now will soon be gone, but the things we cannot see will last forever."  (2 Corinthians 4: 16 - 18 NLT)

    
    
    


    

RELIEF / FRUSTRATION

RELIEF:  The PICC line is in. I am wired and ready to finish my infusions without IVs. This assurance frees me from a certain level of anxiety and dread. For this, I am grateful.  RELIEF!

   The purpose of this blog is twofold.  The act of writing about my cancer related experiences is medicine for my soul. There are moments when living with cancer overwhelms me.  Journaling helps me to put things into perspective.  Through my words, I hope to help someone who faces a life crisis. I hope that I can make someone's road a bit easier. I hope that my little story finds it's way into the hands of someone who can use my experiences for research to end this evil disease. 

     I want to give honest feedback to those in the healthcare profession as well as to folks who, like me, find themselves emerged in a maze of medical jargon and procedures with no background in such. I am blessed to have met some of the kindest medical professionals I could ever ask for both at M.D. Anderson Cancer Center and at West Texas Cancer Center. When I entered WTCC for the first time, I refused to make eye contact with the patients in the waiting room. I did NOT belong here and I was convinced that I was just a victim of a simple mistake. I just knew that after a quick review of my labs, I would be released from this strange world of which I wanted no part.  Of course, that did not happen, and I have since become quite at home at the WTCC and many staff members have become friends. My husband and I have been treated with respect and compassion. I have no complaints........except one...........

FRUSTRATION:  My frustration level comes from two points.

1.  HOW ABOUT A PICC LINE?  I am well into my treatment cycle - I have endured six painful IV infusions prior to getting the PICC line.  One IV insertion left me void of color, curled up in fetal position holding a pan under my mouth..... all because a nurse insisted on digging for a vein that was not usable.  I have recently learned that this suffering was unnecessary. After that nightmare of an IV, I asked my sweet nurse friend if it was time for a central line. She explained that the port requires a surgical procedure and that is probably too extreme at this point. She suggested a PICC. "A WHAT?  Why didn't someone tell me earlier?"  It concerns me that I was not educated about the availability of PICC line on the onset of treatment. I vividly recall the moment when my oncologist explained my prescribed plan. When I was told of the six month treatment period, I specifically asked her if we should consider having a central line port.  She quickly said "no" explaining that the procedure was more invasive than my treatment required. She offered no word about the less invasive PICC line. I couldn't ask about something that I didn't know about. Believe me, to avoid nine IVs, I would have taken the first appointment available for the procedure!  At this point in my treatment, the veins in my left arm are unusable for IV.  The veins in the elbow area are hardened by scar tissue. The lab staff tells me that they are having difficulty with my blood draws, and I KNOW this to be true...... I FEEL it!  It doesn't take a genius to come to the conclusion that if one arm is unusable with half of the treatment completed, the other arm will suffer the same deterioration by the end of treatment.  I want to avoid that. My cancer is a lifelong chronic condition and I will need my veins for future labs and treatment. 

2.  JUST KIDDING!  This leads me to the big disappointment...........they CAN, but they WON'T!  As I considered the pros and cons of getting the PICC line so late into my treatment, this one thing made up my mind:  blood draws can be obtained through the PICC!  Who knew?  Once a week for the next 9 weeks...... Needle free labs.........YOU BET!  SIGN ME UP!  Yesterday, as the infusion services nurse was explaining the procedure, I asked her to explain how blood can be drawn through the PICC. After she described the process, she added. "You do know that the Odessa cancer facility does not allow blood draws through the PICC line, don't you?"  WHAT?  WHY?  "It's the policy. Only an RN can draw blood from up the PICC line. It's about staffing. The WTCC would have to hire more RNs to provide this service.  They provide blood draws only in the lab. You could go to Midland. They do PICC line blood draws there."  

     Tears. Disbelief. Burst my bubble.  Confusion. They CAN?  But they WON'T?  It's about staffing?  It's about money?  

     At this point I looked at my husband. "Maybe this is a mistake. Maybe the benefits of this procedure are not worth the risk and the expense. But I have come so far. Just getting me into this room required courage and faith. My friends have prayed me to this place. I am at peace. Let's go through with it."  

   So, it's done. I am not yet finished writing emails to the higher ups at the cancer center.  My requests for blood draws from my PICC line might fall on deaf ears, but I am certainly going to try!  I could transfer my care to Midland, but I am at home at WTCC. The staff members are my cancer peeps.  They are my team. I can't leave my team. I just wish that my team had the freedom to treat me in the best way they know how. Their hands are tied by bureaucracy.  The same bureaucracy that will stab me in the arm - again and again and again.   Now that is frustration!!!!

"The Lord is near the brokenhearted and saves the crushed in spirit."  Psalms 34: 18

"I can do all things through Christ who gives me strength."  Philippians 4: 13. 

I PICK THE PICC

     The irony continues. A girl with a lifetime of needle-phobia living with cancer of the blood!  I have to give myself a little pat on the back. I have really been a big girl. In the past year, I survived approximately eleven IVs and at least 30 blood tests.  Not to mention, I had a bone marrow biopsy and lived to tell about it. With God's help and comfort, no doubt. I could not have done this on my own.

     Things are getting a bit more challenging in the needle department. My healthy veins are becoming hardened with scar tissue. My visible veins just right for IVs are deteriorating.  The sticks are becoming more painful and my nerves are shot.  Today, I am asking for a reprieve. I have decided to have a PICC line inserted in my arm. I have been hesitant to do this because of the constant visible reminder of my "condition."  I deal with children every day and I don't want to worry them. But, it is time.  

     Yet MORE irony........ today's procedure involves needles!!!!!  Darn it, I can't get a break!  I wish that I could be blissfully knocked out, but NO...... just local anesthesia. To make things worse, as I was researching the PICC, I came across a YouTube video of the procedure. Well, of course, I HAD to watch it. Why did I do that?  Inquiring minds want to know, I guess. (Flashback to last year...... while preparing for my toe joint replacement surgery, guess what I did.  Yep!  I watched the video of the procedure.  To this day, I can only eat boneless chicken. Let your imagination run wild with that one!). 

     So, as of 2:00 today, I will be needle free through the remainder of my treatment. I am asking the Holy Spirit for comfort today as I anticipate the procedure. Please lift me up in prayer today. 

" Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be known to God.  And the peace of God, which passes all comprehension, shall guard your hearts and your minds in Jesus Christ."  Philippians 4: 6. 

     

"ABOUT MOUNTAINS AND MIRACLES"

"Never Once" - Matt Redman    

http://www.youtube.com/watch?v=722zPX1npcA

"Standing on this mountaintop

Looking just how far we've come

Knowing that for every step

You were with us"

         Today is the first day of a new year - 2014.  As I look back, it seems that I spent most of the past twelve months standing at the bottom of mountain peaks looking straight up.  My mountains included family matters, business matters, financial matters, and health matters.  At the beginning of 2013, Waldenstrom's Macroglobulinemia was a disease that I had never even heard of.  A few days into the year, I learned that it would be my uninvited companion for the rest of my life. 

     Nearly three years ago, Steve and I followed the Lord's leading and opened West Texas Music Academy.  We knew that this venture would be a labor of love and that monetary gain would be doubtful.  Keeping operations funded required all of the financial means that we possessed. By fall of 2013, it was clear that we could no longer keep WTMA open with our own resources. Without a miracle, we would close the Academy along with our dream at the end of the year. But we trusted in God to provide what we needed to fulfil our mission to provide music education to West Texas children and offer employment opportunities for local music teachers. If the school was to remain open, God would make a way. 

     As with any family, mountains involving our loved ones were many.  The most pressing problem we faced in 2013 was to find a way to care for Steve's elderly mother.  Our hearts were burdened and our financial resources were limited.  The need seemed to increase as each day passed.



"Kneeling on this battle ground

Seeing just how much You've done

Knowing every victory

Is Your power in us"

     

     This year, I read a series of books by Squire Rushnell about "GodWink moments."  Rushnell describes a GodWink as the way God speaks directly to you through the power of coincidence.  I can't even begin to tell you about the GodWinks that have come to my rescue this year.  Coincidences that guided Steve and me in securing quality care for his mother; GodWinks that provided for us financially with just enough just in time; and the serendipitous events that both furnished a home for our music school
 and gave life to an empty building that a local church had set aside for community outreach.  Coincidences?  Some would say yes.  Me?  I say that it was God's hand guiding and providing.

 "Scars and struggles on the way

But with joy our hearts can say"

      For the past week, the Matt Redman song "Never Once" has played and replayed in my mind.  Several times, the lyrics came flowing through my voice completely unplanned.  Last week as I walked into the doors of the cancer center for my infusion, I caught myself humming the melody.  As the nurse struggled to find a vein for my IV, I began singing it aloud.  When my body turned firey red with an adverse reaction to the chemo drug, the words played continually in my soul. 

"NEVER ONCE DID WE EVER WALK ALONE,

NEVER ONCE DID YOU LEAVE US ON OUR OWN.

YOU ARE FAITHFUL, GOD, YOU ARE FAITHFUL."

     Today, the health mountain is staring me right in the face.  Just when I think it is under control, I seem to lose my footing and start the climb all over again.  Tomorrow morning, Steve and I will report to the cancer center for my Rituxan infusion and Velcade injection.  My doctor has given us a new battle plan which we expect will make it easier for my body to accept the drugs.  I am quite nervous about the next round considering the nightmare of last week's infusion.  My nurse assures me that Rituxan doesn't "hate" me, but we just "disagree."  Well, I hope with AGREE tomorrow!  Let's agree to kill some cancer, but have mercy on me! 

     I don't know why my body has been stricken by an incurable blood cancer.  I don't even want to start on "why me?" ..... "life's not fair,"....."if you only have enough faith, your cancer would disappear"....."God has chosen you to be an example to others."  I can tell you that sometimes I cry, sometimes I scream, sometimes I whine, sometimes I get angry with God, sometimes things get ugly.  I can tell you that just when I have the faith to take the next step up this cancer mountain, Satan sneaks up on me with an anxiety attack, or a bad case of hives.  But I can also tell you this: Because of the mountains, I am not the same woman I was 365 days ago.  Today, I have faith to know that no matter where life takes me, my God is already there.  Today, I know beyond a doubt that whatever happens to me, my Savior will work all things for my good.  Today, I can tell you without fear or embarrassment that I am pressing on toward the prize that awaits me when my journey is done.  Today, I can affirm that mountains turn into miracles - every single day.  Look for yours.  Open your eyes and you will see a GodWink. 

"Truly I tell you, if anyone says to this mountain,

'Go throw yourself into the sea,'

and does not doubt in their heart

but believes that what they say will happen,

it will be done for them."

Mark 11: 23

"So be strong and courageous!

Do not be afraid and do not panic before them.

For the Lord your God will personally go ahead of you.

He will neither fail you nor abandon you."

Deuteronomy 31: 6 (NLT)