Tuesday, November 18, 2008

Back home (again) after pneumonia scare

So I had a blog post all lined up to talk about how great it was to be at home again (I was discharged last Friday), but I came down with a fever on Sunday night and a pretty bad case of the chills, so we paged my oncologist and he sent us to the emergency room. After a bunch of tests and x-rays they thought they saw some pneumonia, so it was back for another stay in the hospital. Ugh. We got to the emergency room at midnight, and since my temperature had returned to normal shortly after arriving we figured that we'd be turning around and heading home. But protocol dictates that they run all their tests so by the time we got the results for the blood tests and x-rays, it was about 2:30 in the morning. Finally the E.R. doctor comes in and says she thinks she sees some pneumonia on the x-rays. Scary stuff, even when you're healthy. So the E.R. doctor called my oncologist and they decide to put me back in the hospital. Then we have to wait for a room to open upstairs, so by the time we get into my actual room it's 5:30 in the morning. And since they thought it was pneumonia, they weren't quite willing to let me go home the next day. So another 2 nights in the hospital it was, and man, I was really ready to be out of there this time. But I'm home now! Hooray!

So in total I've spent 15 days in the hospital (a week in the hospital for induction chemo, then a week recovering at home, then another week in the hospital, then a weekend at home, then another 2 days in the hospital). Being in the hospital is really miserable most of the time. If you're feeling well, they don't want you there! So you're only there when you feel like crap. You're also away from home, hooked up to an IV pole 24 hours a day, and woken up at all hours of the night, just to mention a few of the annoying things. Hopefully the 3rd time's a charm for being released this time.

But being home is great! The first thing you notice after leaving the hospital is how nice it is to wear street clothes again, and how refreshing it is to see *normal* people on the streets doing *normal* things. Even just being outside and smelling the crisp, fall air is uplifting.

Oh, and did I mention that at the hospital I also had to pee in a bottle *every* time I went to the bathroom, so that they could record it on my Input/Output chart? How annoying is that? And since I was on so much fluid from the IV drip, I was peeing at least every 2 hours, all through the night. So peeing in a bottle when you're super tired at 2 a.m. after maneuvering your IV pole into the bathroom, then recording the amount on the chart in the dark, and doing this all while feeling tired and sick and miserable is really a testament to how demoralizing all of it can be. I just thought I'd mention this, since it's pretty nice to be able to use the bathroom like a normal person again :)

Anyway, we spent last weekend walking around outside to help get my strength back (I've now lost 16 pounds since starting the induction chemo), doing chores around the house, making dinner, watching a lot of TV, and just chilling out on the couch. Still not having a huge amount of luck getting normal food down since it makes me nauseous sometimes just thinking about food, but it's getting better by the day. Today was a big milestone: I had my first slice of pizza! I haven't had pizza in 3 weeks. Things are steadily improving.

Other good news: my liver problems seem to have gone away (hooray), and my white blood counts are steadily increasing (woohoo!). As an example, just a week ago my neutrophil count was at 0.00, then it slowly started rising: 0.01 one day, then 0.03 the next, then 0.07. Yesterday they were at 0.4 and today they're almost at 1.0! A normal neutrophil count is above 2.0, so I'm halfway there. Keep your fingers crossed that they keep going up. Having more neutrophils will help a lot in battling the constant fevers and infections I keep getting.

Oh, and I'm still on the nutrition IV drip, even at home. The home health care nurse delivered 2 huge boxes of supplies which we had to buy a small cart to hold it all. Including are things like saline flushes for my PICC line, gloves, alcohol wipes, syringes, vials, and all kinds of other stuff you'd normally only find in a hospital. We even have one of those red BIOHAZARD boxes that you use to throw away sharp needles and other stuff. Also included was a cooler full of IV bags that contains all my nutrients, vitamins, and fats, and a small IV pump for my infusion. So basically at 9pm every night, we flush my PICC line, inject various vitamins and minerals into the nutrition bag, then Johanna plugs me into the pump with the IV bag attached. It's kind of cool, since it's way quieter than the pumps at the hospital (they whir and click all night), and the portable pump even comes with a backpack that can hold both the IV bag and the pump. This way I can walk around the house or even go outside without it being too big of a deal. It's a 12 hour drip, so I have to sleep with it overnight, but I've been hooked up to the IV for so long it's not even that big of a deal. And it's reassuring to know that I'm still getting nutrients even if I can't eat much. Hopefully we'll be able to wean me off of it by the end of the week.

That's it for now, here are some pictures from the last few days:

Johanna and I at Stumptown. The coffee was too much for my poor stomach though :(

So nice to see our beautiful backyard again

Our cart full o' hospital stuff

Nurse JoJo

The IV pump and a bag full of food (yum)

Plugging me in

I'm mobile!


Nic said...

Wow, that's all quite the ordeal, glad to hear you're back home (again) and able to some what enjoy yourself... and out and about too! Awesome!

Rachael & I will swing by once Rachael finally beats what ever bug she's stuck with right now (I suspect I'm carrying it too but I'm far to stubborn to be 'sick' ;-)

Keep on keepin' on!

erin said...

Hey Steve! Cindy's friend, Erin here. I saw that you were looking for comments and I am sure they cheer you up when you're feeling like crap, so hope you don't mind a comment from a sort-of stranger.

It's funny, when you started to list the things you'd missed about being home, the first thing I thought was, "peeing like a normal human being!" That was my #1, followed closely by sleeping in my own bed with no IV and monitors attached.

Anyway, just know you've got one more person among the legions of fans out there cheering you on. Glad you're home again!

Noor-E-Gagan said...

Steve- Glad to see that you are back home again. Being in good spirits is part of the healing process too so keep it up!


lynda said...

so glad you're back home! that's also awesome that you can be all mobile now too! :D

George said...

wh0a.... hospitals are just so not fun. 15 days!!! That's nuts!! 7 was my record. And yer just getting started. However when I went in it snowed like 4 inches and when I was out nature was blooming. I was overcome with emotion when I got out and started crying at the flowers.

And then I was a little beeatch when I was home. I remember all the food tasted salty and I blamed my mom. I though she had dumped salt on the dish. Poor thing. So I hope Johanna's all kewl like that.

It sounds like you are a lot less emotional than me so if you keep your head straight and thinking positive then that's half the battle GI Joe.

On the tougher things in life and on a scale of 1 to 10 you are at a Spinal Tap 11. So just think of all of the other shit life is going to throw you and it will seem like nothing from now on.

It looks like your food comes in vanilla flavor. ;)