Lessons learned

My second vacation week is coming to an end with Round 2 of chemo awaiting me Tuesday and I am thinking back on the lessons I learned over these past 2 weeks.

Lesson 1:  no one knows my body better than I do.  I knew the infection was brewing, despite two physicians telling me otherwise.  And that leads me to...

Lesson 2:  be an insistent and persistent advocate for myself.  Had I been insistent with the first physician - a physician's assistant actually - I might have been given antibiotics early in the game.  Had I been insistent and persistent when I went to the ER due to the infection and high fever, I might have been given antibiotics and avoided the week in the hospital.  sigh.

Lesson 3:  BC + D is far more complicated than I imagined.  I went into this new kind of normal thinking that I had diabetes over here in its own space and multiple myeloma over there in its own space.  I've lived with diabetes for so long that I understand quite a bit about it and how to manage it, so I thought I could keep my diabetes in its own little compartment while I learned about multiple myeloma and put it in its own little compartment.  Well, not quite, it turns out.  I ended up in the hospital with an infection because neither my diabetes nor my myeloma could be compartmentalized and they came crashing together to let me know what the new kind of normal would really look like.

You see, I wear an insulin pump and the pump requires changing every 3 days.  To change my pump, I have to find a new site on my abdomen into which to insert a cannula - a thin plastic needle, if you will - that is attached to a thin flexible tubing that connects to my pump.  The pump is programmed to deliver a steady drip of insulin into me via the tubing and the cannula.  As hard as it is to believe, there is no pain at all associated with the pump, the tubing, or the cannula.  The pump can be cumbersome sometimes, like at the beach, but mostly it's just a part of my life 24/7 and doesn't cause me much notice.

The second part of my pump is optional and it's an option I've often chosen in the past.  It's called a continuous glucose monitor, otherwise known as a CGM or sensor.  The sensor is very small, about the size of a quarter, and sits on top of my skin.  It is connected to an electrode that is inserted in much the same way as the cannula for the pump, except insertion...hurts, stings, is not pleasant....did I mention it hurts?  (Yes, I am a big baby when it comes to inserting my sensor!)  But it stays in place for 6 days and it wirelessly sends a blood glucose reading to my pump every 5 minutes.  That means I have to prick my fingers less often to test my blood glucose.  The sensor also tells me if my blood glucose is rising, falling, or staying stable.  This in turns lets me know whether I need more insulin, more food, or nothing at all.  It is very, very helpful in keeping my diabetes in good control during daily life and particularly with exercising and hiking.  I insert my sensor in that nice fat area just at the bottom of my back, right where my pants sit.

And that became the site of the infection when I removed the sensor.  Though I swiped the sensor area with an alcohol wipe after I removed it, the myeloma had reduced my immune system to....well, I had no immune system to speak of.  I had few white blood cells before I started chemo and then chemo zapped what I had to leave me with just a smattering.  And because I hadn't learned Lesson 1 and Lesson 2, I found myself in the hospital, in an isolated room where everyone had to wear masks in my room, everything had to be sterilized and I couldn't have flowers or eat fresh fruit for several days.  I was - new term in my vocabulary - neutropenic, which is a condition characterized by an abnormally low number of neutrophils, the most important type of white blood cells for fighting infection.

So while last week was a terrible, horrible, no good, very bad week (see the children's book Alexander and the Terrible, Horrible, No Good, Very Bad Day) and I haven't quite figured out if and when I'll wear my sensor again, I did learned 3 very valuable lessons:  I know my body best; I must be an insistent and persistent advocate for myself; and BC + D, blood cancer and diabetes, is more complicated that I first thought and I have a lot to learn.  These lessons will be my cornerstones as I move forward.

May I not have to learn all future lessons the hard way!