Lunar eclipse and moon face

Yes, this is the way things operate around here.  Total lunar eclipse tonight and probably the best viewing location in the country is here in Seattle, where I haven't seen a star since I've been here.  Tonight will be no exception;  the clouds are as thick as marmalade.  I'm sorry, I can't think of any other simile at the moment.  The point is, the yin and yang of it all is making my head spin.

So along those lines, as I'm doing all my follow-up tests and such to prepare for a Dec. 29th discharge, while I was still on a high from my clean biospy, I found out that my graft-vs.-host disease (GVHD) has returned and is chronic.  I don't know if I explained it before, but GVHD is when the new cells think your body is a foreign object and attack it.  Commonly in occurs in the skin, GI tract, mouth, liver, lungs, eyes, and/or joints.  I tested positive for it in the skin (the rash I had shortly after transplant).  Initially, we thought it was acute, meaning it was just a one-shot deal, and it went away on its own.  But last week, it came back, with some extra umph, and some GVHD signs are showing up in my mouth too.  Gross!  "Chronic" basically means "persistent," and means I'll need to be treated for it until my new cells become tolerant of my body.  Which is a long time; over the next 9 months at the very least, at the most a couple of years.  If I stop treatment, it will probably just pop up somewhere else and get worse.  The treatment for GVHD is prednisone, a steroid.  I've been lucky to avoid it this long, as it has all sorts of nasty side effects if you take a high dose for a long time, such as bone loss, inability to sleep, muscle wasting, fluid retention, weakened immune system, high cholesterol, and I can't even remember the other ones.  I would guess that most transplant patients are on it at some point.  Luckily, I will be on a very low dose where I shouldn't see most of the side-effects.  That is IF my GVHD stays under control.  I don't know if any of you know anyone with lupus, but GVHD is very similar.  However, it is curable once the new cells get their shiz together.

One side effect of taking prednisone is that you get this big round face.  And I mean BIG and ROUND.  It's very distinctive, and they call it a "moon face."  I can immediately tell in the clinic who is on pred by their face.  I don't know how high the dose is that makes it so extensive, but I'm betting its not that high.   Now seriously, I have no idea how I have any vanity left after the course of this disease.  I lost my hair twice, have a lump on my hairless head where my Ommaya port is, I have all this facial hair from my cyclosporine (luckily, it's mostly blond), my hands and feet are all mottled from I can't even remember what, I have scars all over from biospies, skin punches, and catheters, and my lips peel constantly.  I don't even want to discuss the shape my body is in.  But I am absolutely dreading the prednisone moon face.  It's just like, C'MON!  Anyway, you are all now prepared for the next time you see me.  Oh, and I'll have a nice belly to complement my little stick legs (another side effect).

Yin and yang: having GVHD really lessens your chance of leukemia relapse.  My new cells are working hard, although a little too hard.  Overachieving cells.  It figures.

So, all that considered, my back pain is gone for now and I'm doing pretty well blood-count-wise.  I'm really looking forward to Christmas.  My mom is here, so it will be the four of us, and I've come to like our little apartment so it seems homey to me.  Although I wish Topo was here.  See our tree in the above pic?  It's actually this funny little 2-dimensional fake tree.  I'm not allowed to have live (or recently dead) plants in the house because of the risk of fungal pneumonia.  So this is what we get.  And I like it!

I hope you all are enjoying getting ready for whatever holidays you are celebrating and Happy Solstice!
lots of love,  j