The Mandelbear's Musings

Colleen is still eating people food -- we went out to Red Lobster tonight as a belated anniversary dinner. We dumped the last of the bags of TPN swill yesterday. We still have to flush the PICC lines twice a day; Marty's been handling the afternoon flush on weekdays. It's pretty quick and easy, though, now that it's gotten to be routine.

There's been a little drainage from the fistula, but it's not connected to her intestine anymore, just draining what appear to be some pockets of infection. :(

She got her surgery moved up a day -- whee! Rather have an extra week, but we'll take whatever we can get.

Colleen's fistula appears to have closed sometime this last week, and her latest infection appears to have (finally) cleared up. She's still on TPN, but with real luck this may be her last week of it. She's scheduled for Remicade (industrial-strength anti-auto-immune drug) Monday, and for hernia surgery at the end of February. Hopefully that can be moved up a week -- she's on the short list for cancellations.

Colleen's physical condition continues to improve: the fistula is shrinking (though not gone yet), and there doesn't appear to be any active infection at the moment (at least on the outside). Still occasional sharp pain in that area -- that's a bit worrisome. Psychologically, she's having a lot of trouble: she's missed two out of the last three holidays, her own anniversary party, Loscon, Conflikt next week... She breaks down more often, and one can't blame her.

Part of the problem is not knowing how long she's going to have to stay on TPN. At least she does have a date for the surgery, but it's four weeks out at this point. And it looks as though she and her doctor are willing to try Remicade to try and hurry the healing process along.

We're both a bit worried about me being away for six days around Conflikt. I guess we both expected things to be moving faster, back when I made my plane reservations -- either she'd be off the IV by then, or she'd be in surgery. And it seemed like a long way away. And Emmy would be riding her bike to school.

Well, the best-laid plans of bears and cats...

Odd; as the routine of the household settles down and I become better at doing the nursing tasks, there's more to worry about, and more anger and frustration and fear to deal with. Can't win, I guess.

A simple task done through pain, frustration, anxiety, and depression depletes one's supply of cope, even if carried off competently.

Woke up in fair shape this morning, going rapidly downhill when Colleen got up and while I took her to a doctor's appointment to check on her fistula site, which appears to have become re-infected. She was on the edge of panic, I think. We both calmed down after getting a prescription for (a different) oral antibiotic; the infection started up after her week on the previous prescription ran out.

Note: positive feedback is bad. When Colleen is panicking, I get weird and either panicked or depressed. Or both; I have no idea what to call that state.

After Kaiser we went out for a longish drive: quality time is always good for both of us. We're now back at home waiting for a pain pill to kick in so I can change her wound dressing. After that I'll go out for my walk.

Colleen's TPN is getting more routine, but it's still nerve-wracking. My energy level is low, and even a walk this afternoon didn't help much. Working from home helps a lot, but my entire afternoon was burned up running errands. Mostly dealing with AT&T.

Last month's cell phone bill was astronomical, due to Colleen's being in the hospital. They couldn't fix that in the store -- it'll require a call to customer service. They could sell me a new phone to replace the ancient one that believes it has a headset attached.

The new phone is one of their cheapest: a Samsung SGH-a737 slider. I don't like the icon-based menu system as well as I liked the Nokia's text-based one, and it doesn't have a standard USB port or charge from USB. No headphone jack either -- you have to use bluetooth. It does have a micro-SD card, but no documentation on how to use it except with their own USB cable and Windows app. :-P

There are a couple of choices: I can take it back and trade up to something like a Motorola, or I can treat it as a stopgap until somebody -- probably Moto, since they've announced it -- comes out with an Android phone for AT&T and pass the Samsung on to Colleen.

I also signed up for fiber for TV and internet. A bit over $100/month for 100 channels of video and 10/1.5 Mb/sec networking. That's almost double my current download speed, and triple the upload (which is what I'm really after).

After that gets installed, early February, I'll cancel the old second line and its associated, ancient DSL, drop or vastly decrease the ISP service I'm getting from rahul.net (and which I haven't used for a year except for being too lazy to move my email), and then drop my newer DSL service from Sonic.net. I think it comes to a net gain of about $50/month.

So, at several readers' suggestion, here's a very rough approximation of my daily schedule for the next couple of weeks. (Two weeks from now I'll be at Conflikt, and somebody will have to fill in for me on some of these.)

• 6:15 try to wake up; take meds; water nose; start coffee
• 6:30ish weekdays: start trying to wake up the Y.D. for school. Catch up on email and LJ.
• 7:15ish weekdays: take the Y.D. to school.
• 7:30ish make breakfast. Continue LJ. Paying bills ought to happen in here, but usually doesn't. Bad. Calls to cell phone welcome -- don't call the house phone, because Colleen sleeps in.
• 9:00ish Tu, We, Th, Fr: close the office door; start working from home unless there's a talk or meeting I need to get to. Mondays I have meetings all day, but it's the home nurse's day to visit so I'm covered.
• 11:30 break for lunch and a walk. If at work, lunch is a snack at my desk; if at home, the walk comes first because otherwise I'll forget it. The walk is what I persistently fail at these days; it gets squeezed out if Colleen has a morning appointment. Calls to cell phone welcome.
• 12:30ish (except Mondays) take Colleen off TPN; wound care.
• Afternoon: weekdays: work; weekends: go somewhere with Colleen.
• 18:00ish Get home from work; take meds; water nose. Go through paper mail - this one often gets spaced, which is bad.
• 18:00ish take Colleen's TPN bag out of the fridge. One of the kids can handle this one.
• Evening: Dinner and "social time" in the living room. Catch up on email and LJ; try to do some music because that counts as quality time. Music's another item that usually gets spaced, especially right now with my voice in sorry shape from a cold or something. Calls to the either my cell phone or the house phone are welcome.
• 20:30ish set up Colleen's TPN and get her hooked up.
• Night: reading, writing, music practice, social time, bath maybe, brush teeth, snuggle, fall over.

This frequently gets blown all to hell by meetings, doctor's appointments, family emergencies, and the like. Things like de-cluttering the office also mostly don't happen. Shopping trips are difficult, but somebody else can take Colleen out in the afternoon.

I seem to have considerably more cope today. Successfully disconnected Colleen by myself, with Selkit observing. We had a nurse here this evening; selkit did most of it, with me assisting and Marty observing and the nurse walking him through it. So I'll have help.

So I'll have a little more assistance than I expected; I'm not too worried about Colleen's care while I'm at Conflikt. And I have several offers of generic help from various friends. The problem there will be, not so much asking for help (which I have no experience at), as figuring out what help to ask for. I've never had to even think about it before.

I've also discovered that I deal very badly with distractions. Somebody was here when I was disconnecting Colleen this morning; I had to shush them several times. Colleen wanted to stay in the living room this evening; I had to force the conversation back on topic several times, and silence a few distractions. I don't like to do it, and I'm no damned good at doing it politely, but I simply can't work through crosstalk.

I'm going to be working from home most mornings, as I did this afternoon. It's difficult even with the office door shut, but I think it'll work. It'll have to -- I don't have the time or energy for a double commute.

Colleen is back at home, as of about noon today. Just finished up with Ellen, the home care nurse. Her visit, being the first for this round, lasted about 2 hours. We'll get one tonight for the TPN setup -- mostly to observe me -- and another Thursday afternoon for the weekly PICC line dressing change. The paperwork and pharmacy getting her home was about two hours, too.

But she's home. That's the important thing.

There's a bag of TPN fluid in the fridge for tonight; there'll be another eight bags arriving tomorrow (eight because deliveries are Wednesdays, and they want to be ahead by one because their normal window extends later than the usual time to hang the bag). After this week she'll be getting her weekly visits from Ellen on Mondays.

(The scheduling stuff is for my reference, of course. Don't let it keep you from visiting Colleen at the Starport -- she'll be here. Between the IV bag in a backpack that's a little too heavy and awkward for her, and the occasional dose of Good Drugs for dressing changes, she's not going anywhere much.)

The time spent yesterday with the psychiatrist and social worker was very useful, especially the latter. All I really got from the shrink was the number to call to set up an initial appointment, and what to ask for. The social worker explained a little about what the options are (I probably need something along the lines of a psychological social worker, but they're all dispatched from an initial appointment with a "therapist" in the psych department), and mostly was there for "emotional support" -- friendship, essentially. A friendly person who happens to be a world-class expert on what services you might need, both from Kaiser and the community, and how to get them. Raj was good, and if he shows up at the Starport some time I'd be delighted, but not surprised. I probably need to learn more about social work.

My stress level is way down now that Colleen is home and I'm no longer fighting bureaucracy, fear, and depression. May change when the Y.D. gets home, but probably not.

Happy bear.