TOP TEN SIGNS THAT YOU HAVE BEEN DIAGNOSED WITH A RARE CONDITION

1.  Your doctor writes down the words WALDENSTROM'S MACROGLOBULINEMIA and tells you not to worry, many people live a long time with this blood cancer.  (Hmmm...... apparently that means that many people do not live a long time........)

2.  Your doctor friend tells you that in medical school, the students nicknamed the condition "Wooly Mammoth" just so that they could remember the name.

3.  You literally spend hours saying the words one syllable at a time, until you can finally say it.

4.  You look up your cancer ribbon color and there isn't one!

5.  In the United States, approximately 1,000 cases are diagnosed each year.  On an average, three Americans in a million will be diagnosed with WM.

6.  The only way to diagnose your disease is by a bone marrow biopsy!  Never had one?  Don't ask!

7.  The best way to describe your cancer, is that is a hybrid which has similarities to multiple myeloma (a cancer of the plasma cells) and non-Hodgkin lymphoma (a cancer of lymphocytes.)  You hit the jackpot by having BOTH - a lymphoplasmacytoid.

8.  You learn that the lab cannot even perform a normal CBC on your blood.  Because of the large number of tumors in the plasma, these heavy cells must be removed for accurate lab results.  Before a blood count can be verified, the blood must be placed in a spinner.  The plasma rises to the top, is removed, and replaced by saline.  Only then, can the correct hemoglobin level be determined.  

9.  You enter the infusion center for your first treatment and 4 out of the 5 oncology nurses have never heard of your disease.  The one who has been in the business for 16 years, says she has helped TWO WM patients during her career.  During your infusion, the nurses gather around you, while you teach them about your condition.  (This does NOT add to a feeling of security and well being!)

10.  Young doctors look at you with interest and say, "Waldenstrom's Macroglobulenemia....... YOU are my first!"  True Story:  During a routine office visit, a young intern was shadowing my doctor.   As he began to question me about my treatment, he turned to the young doctor and said, "Oh, by the way, Mrs. Lollar has Waldenstrom's Macroglobulinemia."  Looking slightly confused, she uttered a polite "oh."  I began to wonder if she had ever even heard of WM.  I ask the young intern, "Have you ever heard of WM?"  She answered,  "Yes, but YOU are my first!"  She had a smile on her face.  I got the feeling that I would be a great specimen in a medical class.  As I left the doctor's office, I overheard him giving the young intern a lesson about the diagnosis and treatment of my disease.  I felt like a medical freak.

For almost nine months, I have lived with the knowledge that  a very rare invader has moved into my body - an incurable blood cancer that very few had even heard of.  The emotional ups and downs have certainly been more difficult to deal with than the physical effects until now.  Adding foreign chemicals into a body hosting a crazy disease makes for some very interesting effects.  During this time of treatment, I do not know what to expect from my body from one day to the next.   One day, I am lying in bed with fever, aches and chills.  The next day, I wake up with my eyes swollen shut.  The next day, I feel almost normal.  I try to find the humor in each situation...... laughing is so much better than crying!  I hope you've enjoyed some of my medical freak funnies.  Keep praying for me as my treatment continues.  I'm working real hard to keep the smiles coming.

"A merry heart maketh a cheerful countenance;

but by sorrow of the heart the spirit is broken."

Proverbs 15: 13

"A time to weep, and a time to laugh;

a time to mourn, and a time to dance."

Ecclesiastes 3: 4

FRI-DAY, FIGHT-DAY

In my weekly routine, FRI-DAY means FIGHT-DAY.  In my fight against malignant cells, a fresh company of warriors was brought in to battle yesterday.  I had my third injection of Velcade and my second infusion of RITUXIN.

Last week, my infusion was quite difficult.  The drip had to be stopped several times due to fever, chills, hives, more hives, more fever.  Pure misery.  By the time I arrived this morning, the oncology team had a plan in place.  This infusion was going to be easier!

I knew something was different when I walked into the infusion center and was instructed to sit in the left side of the room.  As I was nesting in my chair (blankets, books, music, headphones, etc.) I heard the conversation between my neighbor and her nurse.  I caught words like "reaction," "hives," "not going to happen this time."  I looked up at my nurse and said, "Oh, I get it!  This is the section for the SPECIAL patients, isn't it?  Both nurses smiled.  Well great!  I didn't know if I should be offended or honored.  Here I was with the "difficult" patients.  What kind of day would this be?  My neighbor told me that she is also taking Rituxin.  Her infusion reactions were similar to mine during her first infusion.  She told me not to worry because she did much better on her second infusion.  I called her my role model.

Around the corner came one of the nurses who had helped me through the worst part of the hives last week.  She looked at me and said, "I know you."  I said, "Well, you should.  You gave me enough benadryl last week to knock out a horse."  "Oh, yeah," she said, "you're the lady with the red face.  You look really different."  I said, "Yes, that's why they have me seated in the special section today."

Lots more one-liners and giggles (led by my husband, of course) and it was time for the needles.  (I still hate them, you know, but I know that they are necessary to save my life.  I have found a way to live a friendly co-existence with needles. Basically, I ignore them.)  IV inserted.  Benadryl, steriods and tylenol - the Rituxin cocktail. My sweet nurse said that we were going to let me "marinate" for about half hour before adding the Rituxin.  Hopefully the hives would be warded off by this method.  Marinate!  Here I am, the lady with the red face marinating in the "special" corner,

I made it for three hours with no problems at all.  At the three hour mark, I began to feel itching under my skin.  I asked Steve if he saw red spots, and he only saw one visible mark.  I felt as if the hives were just ready to burst forth when something new happened.  A burning pain began in my lower back.  I thought that I had pulled a muscle from sitting so long.  I got up, moved around, changed position, did everything I could, but the pain increased rapidly.  Steve went for the nurse.
She stopped the Rituxin and changed the drip to saline.  Immediately, the back pain stopped.  They sent for the doctor, who prescribed Adivan.  She explained that I still have a very high "tumor burden" and that the side effects of the infusion will lessen each time as the turmor burden decreases.  ("Tumor burden"..........I don't like that term.) We were able to complete the infusion with no temperature, no flu like symptoms and no hives.  Best of all, my new friend, "Adivan" helped me sleep through the next three hours and the infusion was completed.

I slept peacefully last night and woke up feeling refreshed this morning.  I am hopeful for a much better week this week (and so is my sweet husband, I am sure!)

Then they cried to the LORD in their trouble,

and he saved them from their distress.

He sent forth his word and healed them.

he rescued them from the grave.

Let them give thanks to the LORD for his unfailing love and 

his wonderful deeds for men.

Psalm 107: 19-21

RITUXAN ROUND ONE

The first Rituxan infusion was eventful.  I was given list after list of possible side effects of the drug.  I can attest to the fact that the side effect list was accurate.  I am extremely grateful that I did not suffer all the possible symptoms.  But, the reactions that I experienced during infusion followed the text book.

Two hours into yesterday's infusion, my body reacted to the monoclonal antibodies.  The unknown invaders caused my immune system to fight back.  Hosting this battle was not fun.  First, I began to notice aching and discomfort.  This was quickly followed by shortness of breath and shallow coughing.  My chest felt heavy.  I noticed that I was itching.  I looked at my chest and WOW!  I was covered with blood red splotches of rash.  I called out to Steve and he took a look at my face and I knew he was shocked.  Then I started feeling the itch.  My skin was on fire!  Steve called the nurses and the shock in their faces told it all.  (Then they started scratching themselves.  I knew I must look absolutely disgusting.)  I noticed feeling really bad.  This was explained when my temperature was checked.  Immediately, the drip was stopped and switched to saline.  For the next 90 minutes, I took tylenol for the fever.  They gave me so much benadryl that I should have been knocked out.  But, no! I was wired!  Then they gave me steroids.  Wired again.

An hour and a half later, I was given the go ahead to restart the Rituxan.  Hives and fever returned, but my breathing was not affected.  Temperature got a bit too high, so they called for the oncologist to come and check me out.  To this point, I had only received half the infusion and it was 4:00.  A decision had to be made about continuing the infusion.  My doctor expressed concern about my allergic reaction, and she suggested sending me home.  I told her that could continue the Rituxan.  I could take the itching.  She agreed to give me one more hour, but if I experienced any breathing problems, we must stop immediately.  So, the battle continued.

My nurses gave me more benadryl and an antihistamine.  The third time was the charm.  I was the last patient in the infusion center.  All the nurses watched my splotchy face and they all scratched their own faces.  4:15 - I asked the nurse to increase the drip.  She agreed.  4:30 - drip increased again.  4:30 - another increase.  Watching the drip.........watching the clock.  The magic time arrived and 15 minutes of fluid remained in the bag.  Another check with the doctor.  Both the oncologist and the nurse agreed to stay with me and we got ALL of the infusion done!  This was a huge victory for me.

It has now been over 24 hours since I left the Cancer Center.  Symptoms have come and gone all night and most of the day.  I hope to be over this by tomorrow.  They tell me that the worst reactions usually happen during the first infusion.  I pray that my body will adjust to this antibody and will accept it without the fight next time.  But, I am relieved to have these warrior antibodies in my bloodstream.  Fight away, my friends.  My body will be your host.  God will be your champion!

My flesh and my heart may fail,

but God is the strength of my heart 

and my portion forever.

Psalm 73 : 26

RITUXAN, MEET THE HOLY SPIRIT!

Today is the day that I meet a new warrior, Rituxan.  Rituxan is a monoclonal antibody that targets the protein CD20, which is found on the surface of immune system B cells.  This particular protein is found on the tumor cells in Waldenstrom's patients.  The antibody attaches to the antigen and the malignant cell dies.  Because Rituxan targets only the specific protein, little damage is done to healthy cells.  This type of therapy has been used for the past ten years or so with Waldenstrom's patients.  The disease responds well to the treatment.

That is the layman's explanation of the battle that will begin in my body in just a few hours.  I study everything I can to enable this musical mind to comprehend the scientific details.  I know that my understanding is very vague, but each time I study, I understand just a little bit more.  I believe that knowledge is power and I want to understand every step of this new journey.

I believe that in all aspects of human existence, our Holy God is present.  He has sent his perfect, beloved Son, Jesus Christ, as a sacrifice for our sins.  Those who know Jesus Christ are filled with His other form, the Holy Spirit.

"The spirit is the One who is our intimate companion,

making Christ's presence real to us.

He brings us to the truth about Jesus and leads us to salvation.

He empowers us to live our daily lives.

He speaks to us.  He leads us.  

He prays for us.  He teaches us.

  He is, in fact, our Advocate in every aspect of our life.

(from Who Is The Holy Spirit? - Stonecroft Bible Studies)

Do you believe that God speaks through His children?  I certainly do.  I have received a message just this week.  A message from God, given to me in pieces from three of my friends.

• Nancy Dye Molinar is an artist, a potter, a creator.  Recently I asked her to design an original cross for my wall to remind me of my fight against cancer.  My only instruction to her was that she include a green cancer ribbon (for Non-Hodgkin's Lymphoma) and a pink cancer ribbon (for my friend with Breast Cancer.)  I have inserted a picture of the cross on the right side of this post.  The message she portrayed in her creation was that of a dove (representing the Holy Spirit) flowing into my heart.  Beautiful, I thought, but I did not understand the full meaning until this week.  
• Randy McGuire is one of my dearest friends.  A tender, caring man with a heart for people and a heart for God.  Last Wednesday night before my first Velcade injection, Randy prayed a beautiful prayer for me.  I cried through most of it, but I specifically remember these words.  "As the drugs pour into Kathy's body, pour your healing spirit into her."  I have visualized this all week.  Scientific healing combined with spiritual healing.  
• Jennifer Johnson Douglas.  The student has become the teacher.  Jennifer came into my elementary music class when she was nine years old.  As a teen, she sang in my private voice studio.  Today, she is a Godly mom of two precious girls who are a part of my West Texas Music Academy piano and voice program.  Jennifer is an athlete, a runner.  Last Saturday, I saw a facebook post that took my breath away.  As she was preparing to run a half marathon, she posted that her run would be dedicated in part to me.  She planned to pray for me as she ran one of her miles.  After the run, Jennifer came to me with a message.  She said, 

"Kathy, as I ran in the cold, I received a clear message from God.

All morning, I prayed for friends and family, but something was

different when I prayed for you.  God specifically told me this:  

When the Holy Spirit fills a person, it is like a fire coming in

to cleanse the body and soul.  Picture that as the cancer drugs are

being infused into your body.  God is filling you at the same time."  

I am honored that God chose to speak to me through my friends.  I am thankful that each of them took the time to speak their messages.  My Stevie and I are about to head to the cancer center for a day full of the unknown.  I am apprehensive, but I have absolutely no fear.  I  know who goes before me.  I know who stands behind.  I will accept this infusion and will receive healing both from medical science and from the God who created it.  

"If you love me, obey my commandments.  

And I will ask the Father,

and he will give you another Advocate,

who will never leave you.

He is the Holy Spirit who leads into all truth.

The world cannot receive him,

because it isn't looking for him and

doesn't recognize him.  But you know him, because he 

lives with you now and later will be in you."

John 14:  15 - 17

UNEXPECTED SIDE EFFECTS OF TREATMENT

She called it "Chemo Class."  My sweet nurse at West Texas Cancer Center gave me a crash course last week.  With only a few minutes to prepare for my first treatment, she explained all of the side effect possibilities.  It is not a pleasant list, I can tell you!

OVERWHELMED.  APPREHENSIVE.  VULNERABLE.

After the lab results arrived on Wednesday afternoon, things moved quickly, plans were made and appointments were set.  Phone calls and emails gave me my marching orders.  A six month cycle of two different drugs were selected to be my weapons and the battle would start immediately.   Now that I think about it, I was given absolutely no choice in any of it.  No one asked me my opinion.  No one asked my permission.  But that is probably for the best.  I have done my homework, I have sought the advice of trusted medical personnel.  I have studied and learned all that I can about my blood disorder and the possible treatments.  I just skipped over the part about life expectancy, because I believe that God is in control of that.  I refuse to even be influenced by those predictions.

Eight months of watching and waiting has prepared me for this day.  It seems selfish to say this, but waiting on cancer treatment has been incredibly difficult for me and for my family.   Don't get me wrong, I know that agressive cancer treatment can be devastating.  I know that I should count my blessings for this time of waiting, and I do.  But, the mind can be very cruel to a person who knows that cancer is multiplying and that absolutely NOTHING is being done to stop it.  Satan knows that he has no claim over me, because I belong to Jesus Christ.  But, destroying my confidence and stealing my joy...... that is where he can get a powerful foothold.  And he has accomplished that on occasion.

"Watch and Wait" ended at Friday, October 4 at 3:30 p.m.  Targeted drug therapy designed to go after the malignant cells was injected into my body.  Over the weekend, I reviewed the side effects list from chemo class.  So far, so good.  I am grateful that my body has accepted the first drug with only minimal reactions.  But, I have a few recommendations to add to the list for the next chemo class.

RELIEVED.  ENCOURAGED.  EMPOWERED.

I am relieved that the wait is over.  I am encouraged because of the success history of the drugs I am taking.   I am empowered with the knowledge that malignant cells are being destroyed even now as I type these words.  Bring on the weapons.  My God, my medical team, and I have got this!

Holy Father, Jehovah Rapha, Healer.  My body is your temple and I dedicate it to you.  Use the treatments designed by your children in the medical field for my good.  Give my doctors the wisdom and vision to prescribe exactly the right treatment plan for me. Guide the drugs to pinpoint and destroy the affected cells.  Protect my healthy cells from destruction.  Empower my stem cells to flourish and transform into the healthy cells that my body needs. Protect me from undesirable side effects from treatment.  During the time of a weakened immune system, protect me from illness.  Protect my lymph system and organs from infiltration.  Prevent my condition from the possibility of transforming into a more aggressive form of lymphoma.  Please do for me what I cannot do for myself.  Bless me with energy.  Give me the ability to go about my life and career in a normal way.  Help me to never, ever take health for granted again.  Now I know how fragile life is.  In the strong name of Jesus Christ, I thank you in advance for my healing.  I will sing of your love forever.

"And since we are his children, we will share his treasures - 

for everything God gives to his Son, Christ, is ours, too.

But if we are to share his glory, we must also share his suffering.  

Yet what we suffer now is nothing compared to the glory
he will give us later."

Romans 8:  17 - 18

WATCH AND WAIT BECOMES WAR

When I wrote my last post (The Shortest Blog Entry Yet), I really had an uneasy feeling.  I have always had a strong sense of intuition and it proved itself once again.  After tracking the "magic numbers" in my blood work for the past eleven months,  I have been aware that things were changing.  For the past few weeks, I just have not felt right.  In fact, after my lab, I stopped and visited with the personnel at the infusion center to discuss my future treatment possibilities.

Although I suspected that treatment was approaching, I was not prepared for the phone calls I received two days ago.  Phone call number one revealed that the IgM (protein) level in my blood had DOUBLED in the past four weeks.  Shock!  Disbelief!  The malignant cells in my plasma had a history of gradual increase.  Suddenly the game had changed!  Within the hour, my oncologists had collaborated and a plan was made.  Phone call number two revealed the battle plan.  Chemotherapy would begin in just two days.  Even the plan was a shock.  

All these months, my Houston doctor had told me to expect a four week treatment plan when needed.  My situation changed very quickly and, unfortunately, so did my treatment plan.  I am adjusting to the idea of blood work and chemo injections every Friday for six months.  I am reading the list of possible side effects and praying that I slide through without any.  

Today, I had my first injection (in the stomach!)  Next Friday, the six hour infusions begin.  

Tonight, I relax at home with my family.  I am a bit sore at the injection site, but other than that, I feel just fine.  This is all a bit overwhelming to me right now and I feel a somewhat disoriented.  Watch and Wait was good while it lasted.  We have now gone to war.  I hope to get through this with minimal battle scars.  I pray that the drugs do their work and once again, we will Watch and Wait.  

"The Lord will fight for you; 

you need only be still."

Exodus 14: 14

"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