Thursday, August 10, 2017

An Ounce of Convenience equals a Pound of Pain

Image result for pound of painI’m not a huge fan of needles, never have been.  I can usually procrastinate on a flu shot for at least 6 or 7 months and then rightly justify avoidance on the grounds we are past flu season.   Mostly out of necessity, over the last year and a half I’ve grown more tolerant of getting stuck on a regular basis.    Between twice weekly blood tests, chemo infusions, and blood and platelet transfusions, avoiding needles was like avoiding breathing.  And let’s not forget the king of needle penetrations, the periodic bone marrow biopsies. 

Over time I’ve gotten pretty good at navigating the stab and jab routines.   I’ve learned that there are different needle types depending on the person’s physique, whether it is for stuff going in or coming out, and what you plan to do with the intravenous line once you are tapped in (give blood vs give drugs vs give chemo, etc.).   Turns out what they are doing also determines where in the body you get stuck, a truth that many who have had a shot in the butt instead the arm can attest to.

There are two alternatives to limiting the number of needles you have to face, PICC lines and Ports.   A PICC line (Peripherally Inserted Central Catheter) is what I had when I went through my initial rounds of chemo.   It’s a small operation to insert a line directly in a vein (usually through the arm and routed to near the heart) and then extend it outside the body to one or two access ports (Lumens) that allow the gozintas and gozoutas.   A port is a small chamber (the size of a stack of 3 or 4 half dollars) that also connects into a vein close to the heart but sits totally under the skin in the upper chest.  Ports have the advantage that they have no external access Lumens so a patient can shower and swim without protection and they can stay in for years.

For my first round of hypomethylation chemo I didn’t have either one so each day the nurse would have to find a vein and insert an intravenous line.   I have good veins but the ones in my lower arms (where they want to do the chemo infusions) are very “valve-y” (they bleed nicely but stop infusions).   Some days this could take as many as three attempts and several nurses to find one that worked.  After a few days my arms looked like a patchwork quilt and nurses would start singing a modified version of Carly Simon’s “Your so VEIN” when they saw me coming.  It was not a surprise that they recommended I have a port put in before the next round of chemo.

I won’t go into a lot of detail on the recovery weeks after the first treatment.   The good news was there were less stomach and digestive problems.  The bad news, there were more mouth problems and infection challenges.   The mouth sores were the worst with the top of the mouth feeling like you had just burned it with a slice of hot pizza.  Almost as uncomfortable was when strips of skin started to shred/peel and hang down from the roof of the mouth.   Nasty.   One other difference this time is that my blood level are not bouncing back.  I’ve needed platelets or blood every 3-4 days and my neutrophils (white blood cells to fight infection) have been zero pretty much the whole time.

As we approached the second week of treatment I went into the hospital to have the port installed in my chest.  Cool, I get to go bionic.    The grandkids will love it.  The operation went fine but unfortunately the recovery didn’t.  48 hours later I’m back in the hospital with a fever, infection and bulging lump in my chest that looks like I’m about to birth an alien.   After several hours of preliminaries in the ER they checked me into the Ritz Lehigh Valley where the nurses on my old oncology floor greeted me with open arms.    It’s truly a 5-star experience where I have a “heavenly” adjustable bed, the finest no-name toiletries, wash cloths that can exfoliate a hippo, plush towels so absorbent you can dry one leg, these rad slipper socks with sticky bottoms and a one size fits all designer outfit that snaps at the shoulder for easy access.    They even gave me a plastic beer mug in the bathroom, although there is no beer… they want me to fill it.    Oh, and a personalized fitness program with daily yoga sessions pushing an IV pole around the floor and a stationary bike in my room (I think mostly to keep me out of the hallways).     And how could I forget the all you can stomach room service just a phone call away.

They removed the port and have been pumping me full of antibiotics for the last few days.  It appears there is some kind of bacterial infection causing the swelling, inflamed skin and fevers and given I have no infection protection they are keeping me isolated until they can get it under control.  They may have to operate to drain the wound and pack it with antibiotics.   We will find out shortly.

Right now the next round of chemo is on hold.   To think the decision to avoid needles has resulted in more needles.  Go figure.   Time to go old school and maybe back to a PICC line. 

Till next time, I’m just living the dream!