Random Ickiness

Some people have started to ask me about my blood counts seeing as I'm at day six.  There are no blood counts.  My platelets and red blood cells are controlled by infusions.  My white blood cells are less than 0.1 which means, there are so few, they can't count that low.There will be no changes in that until Day 12 at the minimum.  Its one of the things that makes these days after transplant so frustrating.  We are waiting in definite pain and discomfort not knowing if anything will happen (though we assume it will).

I think this is the hardest part mentally for any patient.  The chemo isn't easy for sure but its nothing like the waiting now.  Everyday I wake up, usually in pain, unable to eat, with very little sleep from the night before.  And one of the hardest moments for me is saying, "Get up!" and actually doing it. Sometimes, the argument goes on for quite a while.  Some moments, there doesn't seem to be a point in getting up.  I have food brought, there are machines that help my circulation when I don't walk, I even can have diapers and have people change them.

There is also usually some new frustration of the day to deal with.  A couple of days ago it was massive water weight, now endless nose bleeds.

But I think people generally are survivors.  We know that we just have to keep going. I am extremely lucky here to also have fantastic staff who walk every step with me.  They will help me address any problem, no matter how small.  And having a on-site cheering team of David and now Linda makes a huge difference.  I want them to see me trying hard.  They worry and they love me.  And they will report to others if I'm not pulling my weight  LOL.  Doing this for others,especially Madeleine pulls me through the moments I can't do it for myself.

Below I've put a picture of myself and some of the bizarre things that can happen.  I woke up yesterday with hugely puffy eyes that were weeping.  We thought this was a result of the 8 kilos of fluid I have gained (but now gratefully losing).  Now that the puffiness is gone, I have two big shiners.  Nobody has seen this before here.  My nose is packed with guaze and meds to stop them bleeding.  Every two hours, I have to repack my nose because it can't stop.  This has been going on for about 30 hours now.  And you may be able to see a lump on the right side.  These lumps come up and go down on either side of my jaw randomly, again maybe associated with water weight or the teeth chattering/clenching that comes with the pain/cold etc.

I am keeping my spirits up and I an happy everyday to be another day closer to engraftment!

Love and hugs
E