01 November 2013

No Candy Coating Here!

I apologize for the delay in my post.  I was working on my entry when our modem died and we were left without internet service for almost 4 days.  I know, first world problems! 

Last week I finished my second cycle of treatment, which puts me a third of the way through my treatments.  I thought that week was hard, until I had to go through this past week, which was Week one of the third cycle.

And now for the technical portion of the story

Here are some details on some minor complications that have occurred.  To refresh your memory, I have a Power Port that was surgically implanted in my chest during my hospitalization back on August.  The purpose of the port is to help preserve my veins from the harsh chemicals used in my treatment.  Also, it makes it very simple to draw blood as needed without accessing the veins in my arms week after week.  
Top, illustration of port placement in the chest; I have the dual port, shown on the bottom.

I'll tangent for a second to tell you that since my mastectomies, I am not able to have any veins accessed, not even blood pressure taken, from my right arm.  This is because I also had cancer  in the lymph nodes in the right axillary (arm pit), and thus they had to be removed.  This makes me vulnerable to something called lymphedema.  My oncologist was adamant that unless it was an absolute life threatening emergency, I was not, in any circumstances to allow any sticks or BP's taken on the right arm.  That means, my left arm is all the phlebotomist get!

For those who have followed this Blog since my surgery, you have read what a difficult time they had accessing my left arm and hand veins in the hospital, before my port was inserted.  These veins are SHOT.  The chemotherapy from breast cancer pretty much wiped them out.

Now - back to the topic.  Since my very first chemo treatment in September, when the nurse accesses my port, they can flush the saline and heparin IN, but they have struggled to get a blood return for my weekly blood work.  This has added sometimes 2 to 3 hours onto my treatment day time.  They flush it again and again.  They have me bend forward, bend backwards, turn my head one way and the the other, while coughing, until finally they administer TPA or Cath-flow into the port.  We wait 30 minutes and try again.  Wait another 30 minutes and try again.  Sometimes we get a great blood return and get on our way.  Other times, nada!  Oh, and you can only use the Cath-flow a certain number of times and that's it!

On my treatment a week ago, it was determined that I had my limit on Cath-flow.  So they did a dye study with x-ray to see what was going on inside my chest with the port.  It was determined that I have developed fibrin sheaths along the end of the catheter that is placed inside my veins from the port.  These sheaths form because the body's immune system fights the foreign object (in this case the catheter tubes) and starts forming cells which collect until they extend past the end of the tube.  When they flush saline IN the tube, the sheaths stay out of the way.  No problem.  We can get stuff in.  But, when they pull back on the syringe, it forms suction and the tail end of the sheaths suck into the tube, blocking or stopping up the tubes ability to draw the blood back through the catheter to give a blood sample.

The bottom line is that I can no longer use the port for blood work.  The only fix is a risky procedure that feeds a tube up through a vein in my groin and try to clean off the end of the catheter.  It's not advisable for two reasons.  1- perforation of the vein and 2 - the fibrin sheaths would just develop all over again.  Oh, and get this.  My body formed these sheaths faster than most people.  Of course!

So, my poor, abused veins of my left arm are all we have (well unless I start letting them use my feet or ankles, and THAT is not happening).  The sticks are VERY painful, and they NEVER get it on the first try.  My veins roll and blow and hide and are not cooperative.  It stresses me out every single time. Just this last Tuesday, the first stick in my hand literally brought me to tears, crying for the terrible pain. So they called for Mayra, who, evidently is the "Vein whisperer".  Well, actually, that is what I call her!  The stick hurt, but she got the blood her first try and that's all that matters.  We shall call for Mayra FIRST from now on.  Please come to me, Vein Whisperer!

Regarding how I am doing - to be brutally honest

Everything that I have read from others who use this chemo regime indicates that the side effects are cumulative.  I have found this to be absolutely true.  Each week has been more difficult than the previous week.  But, THIS week was a real game changer.  It felt like an exponential change in intensity than just the gradual progression of the previous weeks.  

DISCLAIMER: The following is just to give you an idea of what it is like, and not a solicitation for sympathy.  It is what it is.

To describe the overwhelming fatigue, I tell people that it feels like my body has heavy weights attached as I am trying to move through space, becoming exhausted with every step and motion.  I feel so heavy that it is hard to tell the boundary where my body stops and the couch or bed begins.  I just feel enveloped in the couch, I feel so heavy.  And, brain tired, where I cannot put together a cognitive thought.  Sometimes I cannot even find solace in sleep because the steroids induce insomnia, and yet it is painful to keep my eyes open.  I can't read.  I can't watch TV.  I listen to beautiful music.  Or more accurately, beautiful music is in the background.  I am not certain I am always listening.

The nausea is terrible. But, it is easier to describe to anyone who has been pregnant. When I finally eat because I am so weak, it is a struggle because the act of chewing makes it worse. I feel better for maybe 30 minutes and then the wave of nausea comes back again.  Food tastes different because the Carboplatin is platinum based and I have a persistent terrible metallic taste in my mouth.  Even water tastes terrible.  

This week sores have begun to develop in my mouth and throat, also making eating, as well as swallowing difficult.  I wake up with a pretty bad headache every morning too.  

Psyche - I can't just leave you with this sad story

Here's the thing.  Everything above is absolutely true and unexaggerated.  But, when you come to see me, you bring me life and energy.  It's probably more accurate to describe me as a leech, sucking the life from you.  But, I am truly fed by your spirits.  I am enlivened by you.  I can feel all those symptoms and still feel transformed while you share your energy with me.  I feel ALIVE!   It is amazing to me that it happens every single time any of you or my family come to visit me.

This is REALLY hard!!  And, I am very aware that I am not doing this alone.  I have an army of angels here on this earth who support me with their love and prayers.  I just want you to know that it means so much to me.  You are making a difference in my life.  

For this, I am truly humbled and grateful.


debbie prieto said...

Sally...I just want you to know I think of you every day and am praying for you.

Heather Carter said...

Thank you for sharing your story and allowing me to follow your journey. Sarah continues to practice...some, not enough, but some. We would love to drop by for a few minutes to visit if you are OK with that. I would also love to bring your family dinner one night, too.

No pressure either way. Just let me know what works for you.

Thinking of you often.

Heather Carter

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