Home

After 4 days home, I am still too conflicted to write about it.  But get this: I'm still going to write about it!  Because I want to be a good, responsible blogger.  That, and I really don't have a whole lot else I can do around here.  Let me back up just a little to report that my final tests in Seattle revealed I'm doing fairly well.  There are a couple of little issues which I'll discuss later.  But no loss of lung, liver, heart or kidney function which is great.  Unless the GVHD gets to them, but let's not go there till we have to.  The prednisone is working for now, so I can start to taper down on the dose a little.  And I have a new medication that replaces 6 giant pills a day with 2 little ones.  Awesome!  My medicine cabinet still looks like a pharmacy, but every little bit helps.  Also, it was pointed out to me that I now have 2 sets of DNA.  My blood DNA is totally different than DNA taken from my hair or skin or wherever else.  The DNA in my blood would match some kid in Australia's, but the rest of it is my own.  My blood type has also switched from O+ to O-.  The universal donor, if I could donate.  For Pete's sake, what a freak show.

So, being home.  I must say, we had really gotten used to our minimalist life in Seattle, similar to when we lived in New York.  Plus, I had Brett and Luna and Jo and Jen and Mike and Nico there, plus family and friends coming to visit regularly, so I didn't really feel like I was "away" in Seattle.  It got homey.  Not to mention that my every day was scheduled and printed out for me.  Coming back to our house full of stuff felt cluttered and heavy with the weight and turbulence of the last year, and there is this chaotic feeling of several months that have to be planned day by day since we haven't figured out how to organize our lives with Brett's return to work, my health and ability to take care of Luna alone, and to eventually work again... So, Brett and I spent a cathartic New Year's Eve packing a bunch of useless stuff up for donation or throwing it away.  We purged several bags of stuff, and had the restraint not to give in to Brett's musing that we just take everything out of the house into the street and burn it and start all over.  I know that escape from cruddy memories isn't really possible, no more than the escape from some mourning of memories of the time when life seemed "normal;" however...a nice bonfire was tempting.  And I would really like some new furniture.  But everywhere is a little "haunted" for me at the moment.  Today, we had to drop my files off at the UCDMC Cancer Center, where I began and will now continue treatment.  Luna asked if I had to go live at the hospital again.  I was similarly spooked being back there.

Luna was so excited to be home, especially in the backyard. That kid loves being outside and exploring.  She also has all of her old toys here, which apparently require being removed one by one from wherever they are kept and spread across the house so she can see them all.  She's such a happy, adaptable little girl...we are just too lucky.  Except when she's being a jerk, which luckily isn't that often, and is considerably less often than her parents.

There is also the incredible awesomeness of seeing my friends here again.  That's when I feel really happy to be here.  I have said it a million times before, but I have no idea how we've been able to surround ourselves with people like these.  Topo is not home yet, but hopefully will be later this month.  It's hard to feel totally complete without him around.  I haven't seen him in 6 months.

So on the health front, I ended up having another Ommaya injection 2 days before we left Seattle, and am dealing with the normal issues from that.  Which suck, but they're not quite as bad as before.  I haven't had to stay in bed all day, anyway.  It's incredibly important that I exercise now, because the steroids I take, and the fact that I am technically post-menopausal from my treatments (which was expected), both contribute to bone loss.  I had a bone density scan before I left Seattle, and they detected some demineralization of the bone in my left hip (which has been shoddy for a couple of years now anyway, so I wasn't hugely surprised).  So I take my supplements and blah blah blah, and have gone on a couple of walks.  Walks in the flat lands are very different than Seattle walks, by the way.  But this initial walking is mild preparation, really, for getting back to yoga and more weight-bearing exercise.  Unfortunately, for how active I have been in my life, I dread the thought of physical activity now.  It just makes me so wiped out afterwards (not in a good way), and I'm so weak and pathetic during the whole ordeal.  For example, on today's walk, I tried to "trot" across the street to avoid a car.  Well, apparently my legs do not remember how to run.  They wouldn't spring back up.  So as I ran, I just got lower and lower to the ground.  I thought I was going to end up in the gutter by the time I reached the other side of the street.  It was devastating.  Although, recounting the incident later, I also realize it was hilarious. 

I have an appointment with my doctor tomorrow, and I'll probably have appointments once a week for some time.  They're basically just monitoring my medication concentrations, blood counts, GVHD, and the status of viruses I already have that are currently latent, but could activate at any time while I'm on immunosuppressants.  Less frequent visits are good, since I had my central line pulled in Seattle and now have to have peripheral blood draws.  I saved the line; maybe I'll post a picture of it.  The docs were fairly confused when I asked if I could keep it.  But we spent a lot of time caring for it and cleaning it and adjusting my wardrobe for it...plus, I got all kinds of good stuff out of that thing!  Of course I'm keeping it.  Also, it's just a trip that it was IN MY HEART.

Anyway, given my physical exertions today, that's all I can manage blogwise.  Being in Seattle wasn't bad, and being back in Sacramento is good too.  Being anywhere is good.  There is a lot of love in my life that makes that possible.  Cheesy, isn't it?

~j