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.