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)