Day +11

I’m coming home tomorrow (Sunday)!

My WBC count multiplied by 6 up to 1.45. And my absolute neutrophil count (ANC) which had been non-existent and needed to be 500 for me to leave was 1200 this morning!

There is a little bit of a glitch with my home medications but everyone here is doing everything they can to work it out. 

I just had another reiki session and I’m waiting on the arrival of my mom and my brother for their visit. Scot comes tomorrow morning to take me home two days early!!

I am also anxiously awaiting the Hickman line removal. 

I have some more “training” to do before I can leave. It is a tiny bit frustrating because there are some inconsistencies between sources of information in regard to the long list of limitations I will have for the next 30 and also the next 90 days. But never fear I will get it all sorted out, with the assistance and of course the nagging of my great care team at home. 

Day +5

Day +5 was a good day, although it started with a rough night prior. I woke up around 4 am sopping wet, assuming I had just had a terrible night sweat. It was not until I realized it was more moisture than would evaporate on its own that I hit the call button. As it turns out my fluid line had gotten disconnected. And then, after changing the bed and falling back to sleep I woke up with a migraine an hour later.

BUT, I had a nice visit with Kyle, neither of us needed a nap and I did not need any “coverage” anti nausea meds (I am getting two of them without requesting over the course of the day). I feel more like myself with more energy. I do understand that it may get worse again before it gets better. But I am also open to the possibility that it will continue to get better, or stabilize with a few bumps. Either way, I’ll get what I get and I won’t get upset (that works for 53 year olds as well as it does for three year olds).

My WBC is down to 0.22, which is considered fairly close to bottoming out. My hematocrit was low enough that I did need and received a unit of red blood cells. The nurse made sure to inform me and Kyle that this was prime stuff, from one donor, screened and irradiated, so more “good stuff” for me!

Anxious for Sarah to arrive tomorrow for a four day stay and not just because she is going to do my laundry.

Thanks to all the people who have hosted or will host me and my visitors here in Boston: Alison’s Aunt Maureen and Uncle Joe, Lisa’s friend ‘Grini, Ken’s cousin Herman and Marsha, Sarah’s friend Suzanne, Kyle’s friend Jane, and perhaps even an old school chum of mine Ellen (if it works out).

And lastly, a Happy Father’s Day to all you dads out there – I was sad to miss all three celebrations I would have gone to today, but delighted that a good time was had by all.

Day +3

Not much to report today:

  • :I am more tired.
  • Nausea probably not as well managed today as yesterday, but no puking.
  • Kyle left this afternoon and Scot comes tomorrow morning.
  • I’ve lost 13 lbs.
  • I am a little worried about becoming deconditioned, as I am more and more fatigued and up to doing less and less. But I did get out  there and walk a bit this evening and got on the bike yesterday evening.
  • WBC (white blood count) down to 0.41, platelets and RBC lowered slightly but no need for any transfusions.

The photo is of the beautiful silk arrangement Jane brought me yesterday.