I can't believe how fast this year is going by already!

The past 2 weeks have been good ones.

I'm in a place where things are stable, pain is managed, symptoms are under control, and my energy levels are fantastic (apparently getting enough calories makes a person feel really really good!).

I'm on pretty heavy doses of narcotics and antinauseants to BE in that place, but that's a small price to pay.

Right now I'm still getting about 80% of my nutrition via IV TPN, and almost ALL my fluids that way. I hook up in the evening to 1L of saline with sugar in it, run that in over 2 hours, then switch to the TPN (nutrition) for 12 hours.
Most mornings I'm supposed to hook up to 1 more litre of saline with sugar, but i've been skipping the morning litre as I am drinking some during the day, and by the AM I just want to be 'untied'.

The boys are doing fabulously, so I'm very greatful for that!!

This week we will be making some decisions around the 'next step'. We should have had this sorted out weeks ago, but i have been letting things slide as I'm really enjoying just 'being' for a while.

But - it's time to start moving forward - I have been 'coasting' on high dose steroids for a while now, and my body is suffering for it - the doc diagnosed me with 'steroid induced diabetes' this week, and I'm very swollen from the prednisone - it's time to start looking at other options. I suspect the next step will be Rituximab - a chemotherapy drug - which is a bit scary, but can work wonders for some people.

fingers crossed!

I'll update when I have news!



  1. I am so glad that you are feeling better!


  2. How wonderful that you are feeling better! I am glad the boys are doing well also...now is a GOOD time for them to be healthy. You certainly deserve this improvement and time to just "be." Thanks for updating!


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