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)