Day + 5 (Saturday)
The PICC line was replaced and a new double lumen in the left arm. Dr. Burt thinks the triple lumen was too big and after 11 days just really aggravated the nerve. I'm grateful that it lasted 11 days to begin with.
The new PICC didn't exactly go in smoothly. There was a lot of discomfort when it went in, and an adjustment had to be made after review of the X-ray. It's still a little sore. The right arm is still a LOT of sore, just waiting for it to heal
We switched the daily antibiotic today. I started Cefepime via IV on day 0. On day +2 I developed a rash on my upper back. Originally dr. Burt thought it was folliculitis from wearing the tight tanks with the built in bras. But after three days of topical antibiotics and itch cream, it only got worse and spread to the stomach, thighs etc. Since there is some concern that it is a Cefepime allergy, I am now taking Zosyn via IV. Zosyn runs 4 hours, vs. the 40 minutes for the other. My only hope is that we don't wear out this vein from longer infusions. If this PICC starts to bother me, it's another jugular cath for me.
Otherwise the day was calm. Folks came by with lunch and to visit. Dad walked some laps with me. I got addicted to some show called Catastrophe, Amazon prime only had season one as a teaser.
Today is the day I stopped caring that there is no hair on my head. Didn't wear a cap all day or to bed. How liberating it has been. My mom said I look even more like my little brother now, which is very true. He started shaving his head in his 20's after serving in the Marine Corps. Maybe some bald twin pictures are in order.
Every Saturday at 10:15pm there is a fireworks show. They were far more amazing than this, my camera has quite a delay.
Day +6 (Sunday)
Today has been a good day. I have lots of energy. My appetite is good. I didn't need fluids or nauseau meds this morning.
Todays counts show I'm still neutropenic. Waiting for WBC to be 1.0 or higher for discharge.
In theory, if all goes well and I am discharged next week, I will be home in 6 days. Last night I dreamt that I went to work my first two days home, forgetting that I was on medical leave. I highly doubt that will happen!
I am on day 3 of Neupogen shots. My bone pain during mobilization started early on day 3, so perhaps already being on a pain management schedule will lessen the bone pain as my stem cells start to engraft. I have noticed a bit of bone aggravation in my skull and spine today. Lots of rocking amd breathing as the next round of pain meds is due.
I've been encouraged with my energy and attitude today. Watched breakfast at Tiffanys with the folks, walked my second set of 6 laps with my dad.
As the day has progressed there are some bone aches: hips, legs, spine, jaw and skull. Lets hope engraftment is beginning and I am just days from discharge.
My friend Jodie comes tomorrow she is here through the finish line to bring me home. Yay!!!
I was thinking today about all of you.....the people that have helped me get through this. You don't quite know how helpful it is to get an encouraging word when you feel in the dumps and isolated. I find myself wanting to make you proud, so I push through.
One message that has stuck with me was from Rachelle: "encouraging humor: you've survived 100% of your worst days. You'll survive these too". She was another CIDP patient and she went home several weeks ago.
Thanks from the bottom of my heart for your kindness, encouragement and humor.