September 1st, 2006

(no subject)

We're home and somewhat settled.

Tuesday night I got about three hours of sleep, so I was running on that all day as we brought Tandra home from the hospital. I'm afraid I was snappy and a real jerk a lot of the day. I feel bad about that.

Yesterday was completely insane. We went to Target on the way home so Tandra could get a set of bedsheets for her hospital bed at home. She chose red sheets with a white sheet with black polka dots in the middle, black pillowcases, and an enormous pea green fluffy body pillow.

Today, in spite of lots of visitors, was much quieter, and I'm much more sane. Which reminds me, just because we're home doesn't mean you can stop visiting. We are just as open to visitors now as we were at the hospital, and our flowers are kind of getting old, so come on by.

Friends are priceless. They are helping me keep track of Tandra's meds, logging her pain levels and moods throughout the day to look for patterns, and using Google Calendar in conjunction with my family to work out care schedules to come over and help us. It's really impressive.

I've also continued to get donations from friends and I can't tell you how helpful that is. While we were in the hospital a bunch of our food went bad, and yesterday I spent $230 on prescription co-pays. I have three more to pick up tomorrow. The electric company people came banging on the door this morning to collect - I've never had that happen before. I suspect they were going to shut us off if I didn't have the money (I did). That would have been bad - Tandra's oxygen concentrator plugs into the wall.

Old friends are coming out of the woodwork and old grudges are being forgiven and resolved. That's a nice thing to see. Too bad it takes something like this to make it happen, but it's better than something sudden happening that leaves things unresolved.

Now that Tandra is able to regulate her own pain medication intake instead of complying with the hospital schedule, her pain is managed on a much more consistent basis, and she's much more clear-headed. At the hospital her pain was spiking and plummeting because of the pain med schedule, and when she took a lot of meds at once she got real loopy. Now she takes them on a more staggered schedule and it's working out much better.

The LiveStrong bracelets I ordered showed up today. More than half of them are already gone. I also got the PostSecret book because I knew she'd like it. I was right.

Tonight I realized that on Wednesday I missed a court date for a speeding ticket. Oops. I gotta call my lawyer first thing in the morning. I don't know if being at the hospital with my wife will be a good enough excuse or not. I suppose it will be up to the judge. Either way I'm sure I'll have to pay my lawyer some more to show up again.

I have a mountain of bills and paperwork to sort through. I need to get up early tomorrow and try to do as much of that during business hours as I can. I will try to start back to work from home at least part time on Tuesday. I also have a whole bunch of stuff we brought home from the hospital that I need to unpack and put away. Since our house was cleaned and reorganized while we were out, a lot of this stuff doesn't have a home any more, so unpacking it and putting it away includes finding/creating a new home for it all. Damned if I'm going to mess up the apartment her friends busted their asses cleaning for us.

I guess this whole thing kind of doesn't seem real to me right now. I have no other explanation for the fact that I haven't gotten real emotional in a few days. Being at home is comforting to us both, but I think some part of me feels like she must be getting better because we've come home from the hospital, you know?

I read something today that said Stage IV cancer patients have a 5% survival rate.

(no subject)

Oh yeah, please keep this specific issue in your thoughts/prayers/whatever.

Since a week or two before her biopsy surgery, Tandra's number one source of pain has been down her left leg, especially in the knee. We even went to the emergency room because it was hurting her so badly. At times it brings her to tears, even on all the pain medication she's on. We now know it's because a/the tumor is pressing against her sciatic nerve. If the chemo shrinks the tumor, that could reduce that pain.

(no subject)

My dad has opened an account for us where people can donate anonymously if they want. Problem is, I don't want to post his phone number or e-mail address publicly. And it would kind of defeat the purpose for me to say "hey contact me and I'll connect you to my dad" because then it's not anonymous.

You can donate anonymously on PayPal if you like, but some people prefer not to do it that way.

Anyone got any ideas?

(no subject)

Some people are asking for medical updates. Now that we have a diagnosis and a treatment plan, that information is not going to be changing nearly as quickly as it was for a while.

Our next doctor appointment is next Friday. I guess they're going to do some blood work to see if the chemo is doing anything.

We're still thinking about Cancer Treatment Centers of America. They are willing to fly us up to the hospital in Illinois, making sure her supplemental oxygen is covered all the way, and take her in for a three to five day evaluation. We'd have to pay for the hotel, but they'd cover air fare and everything else. After the evaluation they'd cover all the same expenses for as many more times as she needed to go up there, but they wouldn't cover mine - they only pay for me the first time. I'm trying to decide if they really have anything to offer that we can't get here.

I would kind of like to go because the hospital is about 45 minutes away from the town I was born in. I moved from there when I was two so I don't remember a thing about it. I'd like to go back some day. On the other hand, a trip like that would be real hard on Tandra, it would exhaust her, and an additional road trip to check out my birth town would just add to that. So I don't know.

(no subject)

Here's Tandra's bed. We put the red pillowcases on because it turned out the ones we thought were black were actually brown. You can see her fuzzy yellow and pink pillows and her huge pea green body pillow and stuff.