But perhaps it’s Thursday. I know it’s 11:24 PM because there is this HUGE clock on the wall opposite the end of my hospital bed.
So whatever day it is, it’s late, but I figured you’d rather have the update, late and incoherent, rather than not at all. and I KNOW you’d rather have fancy photos like Emily takes rather than snapshots I capture with the back of my phone using only my left hand… but Emily is at home, sound asleep.
I am, obviously, still here at the Presbyterian Cancer Center. They are very nice here, and it’s a quiet, peaecful place. I got to escape down to the interventional radiology department yesterday morning to have a port placement. Here is what I wanted, because I used to have one and I loved it:
This kind of port is all totally hidden under your skin, no moving parts, etc. Oh well. For various reasons, I had to get the kind that sticks out and you have to do major daily maintenance on. But please don’t think I’m complaining. As soon as I got this new vascular access device, all the poking and sticking and fishing STOPPED. You are never going to believe this: they were even able to draw my blood at 1 AM this morning without even waking me up.
I get to take it home with me and it is a very good thing.
Here’s another good thing:
Being able to access the world and my friends with my computer in my hospital bed. I am absolutely overwhelmed by the love and support and by the comments from people who really, really get it. Like you know how the other day I was whining about the financial aid stuff I was trying to get done while feeling so bad… the insight that several mamas had that having this one job that I could do to take care of my family, even though I had to be away from them, was a GOOD thing… well, it really helped me feel better about lots of things.
And the comments! I have read and treasured every single one. The poor nurses. They are quite tired of my calling them to read what you’re writing. Like this one:
OK, so maybe it’s bragging, or being excessively proud of how my family has coped through this all, but gosh, to have somebody notice that we are getting through all this by being a family TOGETHER! Totally made my day.
And then, the other thing about this connection to the world through my computer… it became a major portal of fun and happiness over the past two days. My NSML friends all collaborated to fill every electronic device I own with the most amazing mp3’s… inspirational music, laugh-till-you-cry good clean comedy, funny kids stuff, awesome peaceful classical selections…. I have no idea how they all put it together, but so many people sent me so many different things, all perfect, and not one duplicate. I would love to be able to find the master data list they must have hidden somewhere…
The only problem I had, as I downloaded and listened and downloaded some more, was that I learned that I had to listen to my brand new things by album or artist. If I let them all play randomly, every time a new track came on I had to stop and figure out who or what it was that was so amazing. 99.9 % of the non-classical music and 99.5 % of the comedy was totally new to me. But the ones that were on my ipod, when I tried to go to sleep last night on “shuffle”…. big mistake. There’s no way you can fall asleep when you go from classic Amy Grant to PDQ Bach to Facing Future by Israel Kamakawiwo’ole and then on to Bill Cosby’s version of the Noah story.
You know, if there ISN’T a master list out there, I need to make one. Or maybe Sam can create one of those fancy side bars with the Amazon links with everything on it. I know I’m far less aware of the music world than I should be, but this compendium of diversity is amazing. I know you would find some new treasures you’ve never heard of.
And while Sam catalogs the MP3s, Emily needs to take photos of the flowers. Joy, pure joy and sunshine.
But before I sign off, you might want to know the latest with this pneumococcal pneumonia? So I got my port, and I’m still on boatloads of medicines. More medicines. Because now my blood pressure is too high and my potassium is too low. Even though every day they give me more potassium and more blood pressure medicine. Heck, they are even giving me blood pressure medicine that is supposed to have the side effect of raising your potassium. Um, not so much yet.
So even though I don’t have a fever any more, and they are not capturing any bad germs from my latest blood cultures, and I have my port to get any drugs I need at home, I am sort of stuck here for the moment. It’s going to take probably a month to totally heal from the pneumonia. But it’s the high blood pressure and the low potassium that might delay MY PLANS TO GO HOME TO MY HUSBAND AND BABIES TOMORROW. They are going to keep track through the night (they come in and check various things, give me drugs, breathing treatments, etc every hour all night long…) and they will send labs down at 1 AM. I will get the results (and the plan) when the oncologist comes by at 6:30. If things aren’t all better, not only wouldn’t it be safe to send me home, we have to start the complicated process of figuring out why this is going on… theyve been working on it yesterday and today only to discover that it wasn’t any of the usual, obvious causes. Of course. So we’ll see. And then I’ll tell you. But right now I have some new music to listen to, so I’ve gotta go. As soon as they finish drawing my blood through my fancy new Power PICC 🙂