Tuesday, August 4, 2015

Day +1: Fatigue and Infusions

My fatigue this morning was palpable. Needed to nurse to press the button on the bed to sit me up. So it was no surprise when labs showed low hemoglobin and low potassium. Both were ordered for infusion.

We still haven't don't IVIG, as my hands and feet haven't gotten worse....I even felt some tingling in my fingers today. And some of the numbness in my feet has dissipated in patches.  The nurse walked four laps with me in early evening When I finally had enough stamina.

Also got my final round of Rituxan to really kill any remaining cells. This is the "milder" chemo I had a reaction to on day -6. All transfused without incident, other than a queasy stomach.

There are sudden spells of fatigue with no warning that turn into an hour or two naps. Followed by energy where I catch up on my reading, responding to messages. Then the bouts of queasy that we try to get under control before it becomes nausea. The headache is my content dragon, but so far we have kept it at bay with Tylenol and excedrin rotation.

No real schedule as the days goes by, just depends on the hour and what my body wants to do at that scone. Last week I  took a nap from 2-4:30 pm. Today my nap was earlier in the morning. My day usually starts around 5am and ends around 9 pm..

Thank you blood donors

Nick left today and I cried for a solid half hour. Whether you know him or not, send a nice thought to the universe in his honor. What a guy. At my beckon call while I did chemo, my biggest cheerleader for the finish line, constant reminder of why this is all good, errands to trader joes, laundry runs, soup pickup at Saigon sister almost daily, corn bread muffin runs, my gluten free pancakes from trader joes heated every morning.... I miss him already,

Folks arrive tonight. Hoping for a few more days of mild while the body heals. Will be good to have someone here to get me my favorite soup everyday!!

Shouts outs:
Cards from my team at work and Esther
Care packages from Stacey and Karen

Definitely put a smile on my face.


  1. Nick I don't know you, but I think you're one of the best brother's a girl could wish for. Steph certainly thinks so, and she's always right..........well, most times. :)

    Keep that smile on your face darlin. You are rocking those caps.

    Gentle hugs and, as always, much love. Xxxxxx

  2. Yeah Nick!! You are taking care of my girlfriend and if she's happy, I'm happy! Almost there Steph, almost there!! I can feel it!!! CIDP is disappearing as we speak!

    Love you...virtual hugs!!