Joy, celebration, life I feel!

At least such are the musings of Yoda from one of my birthday cards this year.  I have decided to leave the card displayed prominently on my bookcase, because seriously, is there a better sentiment to wake up to every morning?  And even if you don't feel that way at all, it is difficult to look Yoda in eye and tell him that you don't feel it at least a tiny bit.  In the last couple weeks, I've actually been circling around that feeling!

Since a sufficient amount of time has passed since I thoroughly traumatized Brett with the story of the onset of my disease, I've decided its time to continue on with my mangled story.  I may have mentioned that my doctor's appointments are now every other week, which is a good thing.  It implies that nothing is really changing.  Oh, except last week.  First I had to have an immunoglobulin infusion.  Why yes, of course I'll explain!  *Be warned, this is all probably quite wrong since I just learned it myself.*  Until my new cells become adept at making antibodies (and I quit foiling their efforts by taking immunosuppressants), my IgG numbers, which are a collective measure of all my innate immunities, will tend to be low.  Now, these are evolutionarily ancient, non-specific immunities, like mucous membranes, tears, a number of blood cell, gut bacteria, skin, inflammation...basically just stuff that keeps stuff out.  Then there is the adaptive immune system with it's target-specific immunities and pathogen memory.  Those numbers, like my T-cells, B-cells, and lymphocytes and antibodies (for example) will come along on their own on their own time, and also when I start taking less pills! wonderful! pills!

SO, the infusion took about 3 hours and was a relaxing non-event.  The following day was the dreaded Ommaya injection, which at the time was also non-event.  Then all kinds of craziness hit the fan on Wednesday, I think?  I can't even remember.  The severe headache and backache was back, this time accompanied by constant vomiting.  By Thursday night, I was in such a state I begged to go to the ER...I knew I needed fluids in a big way as I couldn't keep any water or food down.  So my wonderful doctor arranged for my private ER room, where I was loaded up with IV goodies (actually, they had issues getting the fluids in and I ended up with only a small amount.  I missed my port for about 0.0367 seconds).  Also had IV painkillers and anti-emetics ...ahhh.  They didn't actually admit me and let me go home after I felt better.  I spent the next day in bed all day.  Literally.  My stepdad Jocko came down for the day today to help out too.  THANK YOU!!

I think a lot of things led to the severe reaction.  1.  I was a maniac on fire on Tuesday.  I walked to and from the clinic, picked up a bunch of paint at the hardware store and painted Luna's table and chairs, cleaned, and went househunting.  I hardly drank any water that day.  Looking back, it was probably a little too much.  2.  Apparently, my cyclosporine levels are high, which would explain the shaking like a leaf for the past week, and could explain the low appetite and vomiting.  3.  I was taking all kinds of painkillers on an empty stomach because I couldn't eat and what the heck else was I to do?  There isn't a single oral painkiller that doesn't make me sick.  I have lately been considering going the less synthetic route, if you know what I mean.   Will have to see about getting a prescription.  In the meanwhile, we have to figure out what to do about these injections.  Either I need more steroids during the 2-week course of the chemo release, or we should go back to the old way where I puke for 2 hours immediately, fall asleep for 4, and then go home.  But this newer more toxic drug is more effective than the old one, and I only have 2 more.  Decisions, decisions.

Then, on my Thursday ER blood draw, I found out my platelet counts have dropped by half.  So I'm going to go ahead and try not to freak out about that for awhile.  And here I hadn't thought about relapsing for at least a week.  Sigh.

Anyway, all else seems okay for now.  I have a few things to look forward to...which is nice and hopeful and optimistic and all that, but I am still too superstitious to write about them until they happen :P.  Love to all and hope you're enjoying the wonderful weather!!

Oh my goodness!  I forgot to mention that my podcast is up (shudder): http://www.patientpower.info/program/keeping-hope-alive-alternative-options-for-bone-marrow-transplant