MY "POSITIVE" ATTITUDE

It has been an eventful month in crazy-blood land.  After two units of blood, I feel so much better!  I have a re-check CBC tomorrow to see if my body is able to hold on to the new hemoglobin.  Then, a trip to my Houston oncologist at M.D. Anderson Cancer Center for a new game plan. 


A NEW GAME PLAN! 


Lately, many of my friends have commented on my "positive attitude" in the face of incurable cancer.  Please don't ask my sweet husband about my "positive attitude."  I cry.  I scream.  I say the "f" word (don't tell anybody.)  I stay in bed for hours at a time because I don't have the energy to get up.  I leave the housework and transporting grandkids to him while I sleep.  Morning, afternoon, evening, whenever my body gives out.


But through all of that, when I come to my senses, I do my very best to find the positive in this journey because it is the best healing plan for myself.  I do my very best to stay positive, because my grandchildren deserve a happy, fun grandmother.  I try to stay positive, because my music students have their own lives and they don't need to be worried about their sick old music teacher. 


I absolutely find peace and comfort because the mighty God of Abraham sends his Holy Spirit to fill me when I humble myself and ask.  In moments of no energy, I experience miraculous revitalization - just in time to get me through eight hours of continuous music lessons.  After moments of crying and feeling sorry for myself, compassion comes over me, and I listen to another cancer survivor's story and offer them hope - suddenly, I am also filled with hope.  And when my cancer survivor friends (and there are many) begin to run out of treatment options, I have absolutely no right to have a bad attitude.  My treatment options have only begun.


A NEW GAME PLAN!


When you are thankful, a positive attitude comes easily.  I believe that God can heal me miraculously, in the blinking of an eye - if HE wants to do that.  But, I believe that God can teach this slow learner more by holding me by the right hand through the journey.  Upon diagnosis, three years ago, I vowed to keep my journey public.  Because maybe the words that I have to say about my experiences with chronic illness will help someone else.  Don't praise me for having such a good attitude in the face of adversity.  It is not from my strength, but that of the Holy Spirit living in me.


A NEW GAME PLAN!


Why am I so excited to have been declared "sick enough?"  Watch-and-wait is hard!  Those evil cells are living in every inch of my bone marrow and flowing through my blood stream through every organ, every muscle and even to my brain.  That's my reality, friends.  Watch-and-wait is excruciating!  Keeping score every month.  When is the cancer going to beat me down enough that I can fight back?  NOW!  I have had a miserable autumn, 2015.  Because of God's help and a new drug called Ibrutinib, 2016 will be a healthy year.  We are fighting back - with a positive attitude - with a new drug - and with Jesus Christ beside me.  What's not to be happy about?

"I sing because I'm happy, I sing because I'm free;

for His eye is on the sparrow, and I know he watches me."

song lyrics by Civilla D Martin - 1905

"A joyful heart is good medicine,

but a crushed spirit dries up the bones."

Proverbs 17: 22

WALDENSTROM'S DOESN'T WAIT

It's been a good while since I posted in this blog.  I have been trying to ignore my crazy blood and live like a normal person.  Diagnosed with Waldenstrom's macroglobulinemia in February, 2013, doctors put me on "watchful waiting" with the hopes of remaining in that pattern for years to come.  Sadly, that did not happen for me.  Seven months later, we started a six month chemotherapy regimen which gave me satisfactory results.


Following treatment, "watch and wait" began again for me in March, 2014.  The drugs diminished the tumors and I felt great.  It seems that the effects of the disease had come upon me so gradually that I had no idea that I was sick.  Over the past nineteen months, we have been keeping an eye of the by-products of my malignant plasma.  Through blood work, we can get an idea of the progress of the disease by measuring the protein produced by the tumors, the thickness of my blood, and my level of anemia.  Month after month, lab after lab, we have watched the numbers gradually worsen.  But this time, the change hasn't been so gradual, and I have really noticed a change in my energy level.  I feel tired from the inside out, and I feel like I am basically no fun at all.  I don't like that.  I have developed some new symptoms this time around which add to my discomfort.  So, tomorrow begins the process of making me better.


I trust that you have never endured a bone marrow biopsy, but I get my second one tomorrow morning.  Since my cancer (there, I said it) lives inside the plasma cells of my bone marrow, the only way we can really get a peek at what's going on in there is to drill a gigantic needle (imagine a horror movie) into my hip bone and aspirate a sample of bone marrow.  Hey, I've seen my bone marrow.  Bet you can't say the same!  I was a rookie back in 2013 when I had my first BMB.  I had the test done in the doctor's office with nothing but a pain pill.  I survived, but many nightmares followed.  This time, I'm older and wiser - I asked for anesthesia!  Oh yeah!  Tomorrow I will sleep right through the horror of the BMB.  The results of this test will tell us how much of my plasma is malignant.  With that knowledge, we will move forward to make a treatment plan.


A trip to M.D. Anderson Cancer Center is set up for January.  My Houston doctor assures me that treatment has improved by a "quantum leap" since my first regimen.  Very soon, I am going to have some "crazy blood warriors" doing battle inside me.  Of all cancer thrivers, I consider myself among the most blessed.  But I sure would appreciate your prayers:  for me and the medical team tomorrow during my bone marrow biopsy; for wisdom for my doctors as they work out a treatment plan; and that our healing God will use the treatment for my good.  Please remember my right hand man, too.  My Stevie never leaves my side.  I am most blessed.

"I can do everything through Christ

who gives me strength."

Phillippians 4:13

"My flesh and my heart may fail but

God is the strength of my heart

and my portion forever."

Psalm 73: 26



KEEP ON KEEPING ON

     It was two years ago tomorrow when my doctor said that word.  The numbers printed on the lab results meant absolutely nothing to me.  There had to be another explanation than the "C" word.  My oncologist said the dreaded word and sent me immediately to the scheduling desk.  My day planner was filled for the next three weeks with appointments and events that thoroughly terrified me.  If you know anything about me, you are aware that am a card-carrying needle-phobic.  I don't mean just the kind that gets nervous at injection time.  I am talking complete loss of consciousness.  My Mom could tell you about the time when teenaged Kathy reported to the hospital lab for pre-op testing prior to a tonsillectomy.  Apparently I went into the lab by foot and came out of the lab by wheelchair.  I don't remember much in between, but I do remember asking Mom, "why am I in a wheel chair?"  As an adult, I always warned my nurses and lab techs that I needed to lay down to have blood drawn.  I told them that I was a frequent fainter, just wake me up when it is over.  My husband takes great delight in sharing the story of taking me to the doctor with a really bad sinus infection and picking me up off the exam room floor because of a penicillin shot.  I tell you that so that you can understand the horror that February, 2013 held for me.  CT scan (with dye,) Bone Marrow Biopsy (you can't even call that needle a needle - - - it is more like a drill!), more blood work, and MRI (with dye of course.) 
     Two years later, I have had countless blood tests, 18 chemo injections in the tummy, and nine chemo infusions.  God has blessed me with answered prayer regarding my needle-phobia.  Shortly after diagnosis we had a talk, God and me.  I told him of my fears and asked him to take away my fear of needles. This burden was immediately lifted from me.  Now, I do have to admit, I did not ask God to help me enjoy needles...... no, not at all.  I still hate them.  But every time one comes near me, I just say, "this is going to help save my life" and God gets me through it.
     So, two years after diagnosis, I feel that I should be wiser, I feel that I should understand why I am living with a cancer that only effects 6 in a million people.  I feel that by now I should have put all of this into perspective.  Nope!  Not at all.  Cancer is confusing, cruel, and all-consuming.  Physically, I have good days and "cancer days."  On "cancer days" I feel exhausted from the deepest part of myself.  It is not a normal tiredness.  It is as if every part of my body is rebelling.  Other physical symptoms are beginning to show themselves, but I am learning to deal with that.  For me, the most difficult part of this journey has been and continues to be the emotional reaction to the diagnosis, the treatment, the knowledge that my cancer is "not yet curable," and the uncertainty of when my next treatment regimen will begin.  I am still processing the fact that I have a chronic illness that is unlikely to be cured in my lifetime.  But, at the same time, I feel unbelievably blessed.
     I am not alone.  My family, friends, medical peeps - I am so grateful for each one.  But, I have to tell you, the past 24 months have brought about a closer relationship with my best friend, my Lord and Savior, Jesus Christ.  I always knew He was there, I just didn't always feel the need to call on Him.  The "C" word has brought me to a new dependence on him, and for that, I am forever grateful.
     Tomorrow begins year three of my cancer journey.  Unless God chooses to heal me miraculously, He will walk beside me through the fatigue, the aches and pains, the confusion, and even the encounters with needles.  He provides the great minds who create life-saving drugs, He provides the medical professionals who prescribe and administer them - for now, this is my healing.  Oh, my body will be completely healed of cancer one day.  If not in this lifetime, in the next.  Until then....

"Keep on asking, and you will receive what you ask for.

Keep on seeking, and you will find.

Keep on knocking, and the door will be opened to you."

Matthew 7: 7 (New Living Translation) 

Do not be afraid or terrified,

for the Lord your God goes with you;

he will never leave you nor forsake you."

Dueteronomy 31: 6

    
    
    
 

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