Frankly, I don't know what to title this one.

I guess you could say we are "settling in."  For me, that has involved very little "settling."  Brett went back to work part time, and is approaching full time, and I have been leading a semi-normal existence which doesn't actually feel normal yet.  By "normal," I mean I get out of bed, drive or walk around doing errands, play outside with Luna and Topo (who just came home last week), catch up with friends, get Luna and I fed, and remember to take my medicines on my own.  Which just reminds me, I forgot to take my noon pills today.  Don't worry though, they're just vitamins I can take tonight.  Although I'm late on those (you can see this is going really well).  I'm trying.

This week in normalcy was sponsored by Brett's parents, who came for a visit and took Luna off our hands several times, and cooked us food and helped Brett do home improvements on the Tahoe Park house.  My parents were here over the weekend helping out, and introducing me to the frozen yogurt place around the corner, which for some reason I'd never been to.  So we had a full house a couple of nights, which was fun.  I even had a dinner date with Brett. I can go to public places when they are not too full, so it was an early dinner, home by 8.  I swear its because of my immuno-suppression, not because we're old and boring.

My clinic visits are still once a week.  We started to taper my prednisone, but the rash came back in new and interesting places.  So now I'm back at my normal dose.  Which means I continue to swell up like the Michelin (I don't feel like checking the spelling on that) Man.  I feel as though my face is sometimes unrecognizable, but I'm probably exaggerating.  A lot of it is water retention, and a lot of it is that I eat a lot.  The prednisone makes me do it.  I've gained 10 pounds since I've been home!  Granted, I have been slightly underweight for a long time, but I had gotten used to it. The rash is gone now though, so I may get to try another taper soon.  I really want my cheekbones, waistline and jawline back.  How lame and shallow is that.  I am also hairy, a side-effect from both my cyclosporine and prednisone.  You would think that's a good thing for someone who lost all their hair recently.  But I mean hair and then some.  Especially my arms and face.  My eyebrows and eyelashes are thicker, my arm hairs are creeping onto my hands, I have these sideburns now and I think I'm getting a beard.  Seriously.  It's blond, so you can't see it except in certain lighting, but I really don't know where it's headed. 

Let's delude ourselves into thinking that my weight gain is all muscle from all the walking and yoga I've been doing.  I've done a few 75-minute yoga practices using podcasts from Zuda (my lovely yoga studio <3).  I feel like I'm starting over, but at the same time, it's one of the only things that has felt familiar in my body in a very long time.  It's the first time I've done a full yoga practice since March 12, 2010.  Prior to that, I practiced almost every day and taught about 5 times a week.  So this is a big step for me.  I don't know how it will go at the end of the month when I have to get my next Ommaya injection, though.  Not a good time to be upside down.  Sigh.

On another extremely crappy note, I recently found out that Mandi Schwartz, who has been mentioned in this blog before (she is often written about in the New York Daily News and New York Times) relapsed in mid-December, and is discontinuing treatment.  We both had cord transplants on the same day, and then lived on the same floor at the Pete Gross house after we discharged.  We never really talked, although both Brett and I always meant to strike something up (yes, we are socially-challenged people.  Thank god we have Luna).  As a patient, you come to recognize people who want to talk, and those who don't.  I think those who are more sociable are generally doing fairly well.  Mandi and her mom were very polite, but didn't seem to want to chat in the elevator or anything.  But I often compared my progress to Mandi's by observation.  I thought were doing the same.  We both had our little portable IV fluid bags on in the morning, we would both slog ourselves slowly up the hill to clinic rather than taking the shuttle, I saw her moon face when she started prednisone.  I can't stop thinking about her.  I know now from the articles I've read that our prognoses were very different but I feel- I don't know- guilty or something.  And just sad.  As I still think of her as my companion in transplant, I find I'm worrying over my own condition and blood counts more and more, even when my doctor says they're fine.  I don't feel at all safe in my healing.  I don't know if I mentioned it before, but I feel the need to mention now how much this disease just BLOWS.

Okay, on a less crappy note, I'm going to be part of an interview for a webcast/podcast on "Patient Power" (http://www.patientpower.info/).  It will be about new types of stem cell transplants (cords and haplo or half-matched transplants), and will include a doctor (coincidentally, my doctor part of the time while I was in the hospital) and another patient I believe.  The researcher that ran my clinical trial suggested me for the interview apparently.  I have no idea why.  I did read in one of my files that one doctor described me as "eloquent," which I didn't realize would be the type of thing one would write in a patient's medical file, but maybe that's why.  When she asked me, however, I didn't mention that I don't remember the first 18 days after transplant.  And these days, I can hardly form a coherent sentence half the time.  Hope that won't be an issue.  So anyway, you can tune in to the website on January 31st at 2 p.m. PST and hear me make an idiot of myself.

You're probably thinking, "Why are you still writing?  Do you think I have all the time in the world to waste on this?  And anyway, you need to go take your meds already, you're already late."  You're right.

xoxo,  jess