The Mandelbear's Musings

11:07 pm - Colleen: back in the kitchen!

Perhaps inspired by Food Network on our newly-installed cable, tonight found Colleen in the kitchen cooking dinner. Some of it, anyway: I made the salad, chopped the onions, and started the rice; she made the pork chops and the wonderful apple/onion/cranberry sauce topping.

It's the first cooking she's been able to do all year. I'm delighted.

11:04 pm - Colleen: two steps forward...

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.

09:25 pm - Colleen: people food at last!!

Good news! Colleen's off of TPN as of tonight!! selkit made her potato-leek soup.

Happy Cat. Happy Bear.

08:00 am - Colleen: progress

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.

09:46 pm - Colleen: of caps and crescents

Finally was able to remove the recalcitrant FloLock cap from Colleen's PICC line -- it's supposed to be changed every day, and it's been jammed ever since I overtightened it on Thursday.

The tool that finally worked was an 8" Crescent wrench (based on Colleen's original idea of using an open-end wrench, but the Crescent's longer jaws and adjustability were essential). The port on the PICC line has a narrow neck with two little wings - you can sort of get a grip on it, but not if the cap is stuck. Puttiing the wings against the wrench jaws lets you hold it firmly while turning the cap, which has a large enough diameter to let you apply enough torque with your fingers.

I am vastly relieved.

08:12 pm - Mostly Colleen: Not much better.

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.

07:46 pm - Still hanging in there...

... if only by my fingernails. Managed to get through this afternoon's TPN disconnect without falling apart, in spite of some minor crosstalk, a couple of flubs, and the fact that I'd somehow managed to overtighten the cap when I changed it yesterday. I still have one more trick to try tonight before throwing in the towel and calling for help. (21:05 paper towel didn't work; metaphorical towel will be officially thrown tomorrow with a call to the infusion clinic. No, the general rule of "if you can't do it right, use ViceGrips does not apply in this case.)

I'll do it in the bedroom from now on; if nothing else, not having to kneel down will take a lot of strain off my knees, and not having to bend over will take a lot of strain off my back.

Joyce drove Colleen to Furcon this afternoon. It's good to see her getting out of the house, even though it's only short excursions with help. I worry about next weekend.

I have a headache. It's not helping.

Current Mood: apathetic

09:36 pm - On the gripping hand...

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

09:24 pm - On the other hand...

...performing a simple but important task competently goes a long way towards restoring one's supply of cope.

01:39 pm - See mood (sort-of OK)

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.

09:23 pm - see mood

OK, I'm officially depressed. No damned reason for it; I just hit some kind of a wall. Didn't really feel like a walk, and didn't have time in any case. Didn't call anyone, though I could have while Colleen was in her radiology appointment. Hugs don't seem to help. Neither did a trip to Fry's -- I was snappish and grumpy even though I mostly found what I came for.

I'm feeling lazy and lumpish -- spent an hour or so this evening just staring into space, with too little energy to try to figure out why my laptop keeps losing its net connection. I just ate -- dinner was delicious, and I didn't have to cook it -- and I'm walking flat-footed as if my blood sugar was through the floor. It isn't, but I'm not sure what is.

There are only two weekends between here and Conflikt. I'm not really ready, not even for a little half-hour set. My voice is still a wreck; I've been fighting a cold or something for the last month. Probably an allergy, though I can't guess to what.

There's too much to do, and I can't even get started. I remember that I was happy for a week or two, but that was months ago. This is worse than usual. Probably I'll get over it; I usually do.

09:50pm: Colleen is of the opinion that it's the gluten in the won-ton soup I had for lunch. Maybe.

Current Mood: depressed

11:35 pm - Mixed bag

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.

09:50 pm - Getting better?

We both seem to be doing better today. Hard to say whether it's a lot better or only a little, but better nevertheless.

Worked from home all morning -- I can get through most of the email before breakfast and do a little writing -- and went out for a walk around 11:15. Called cflute and had a pleasant chat, made even more like a walk with a friend because I had my phone on loudspeaker. (I have to do that because otherwise it thinks there's a headset attached to it. But it works nicely in this case.)

Calie gave me a good suggestion: take an extra breath or two before saying anything when I'm interrupted or broken out of concentrating on something. Should help control my tone of voice and prevent the snapdragon effect.

Everything went smoothly with the disconnect; I had lunch and went in to work and actually got a little bit more done besides catching up with people. Came home to find the Cat in good humor after a successful shopping expedition (with Joyce driving) and good news from the lab and her nutritionist. She has a GI appointment Thursday, and it may actually be possible to schedule her surgery at that point.

In the afternoon I finally took the unfamiliar and scary step of requesting a psych appointment. (The person who makes appointments wasn't there, of course, but I left my info for a callback.)

Just got done "fixing her dinner", which has gotten to be a pretty smooth routine. Only thing I forgot this time was clamping the secondary port before removing the flush syringe; doing it in the wrong order apparently allows a little bit of blood to flow back into the line and clot. We had to go in last night and get them unclotted. :(

But it looks as though there's a little light at the end of the tunnel. (Do not cue old Vietnam-era joke. That's not funny.)

09:38 am - My schedule

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.

Current Mood: awake

07:06 pm - When you're up to your arse in alligators...

Colleen isn't sick -- she's wounded. This makes her all the more frustrated: she feels perfectly OK except for craving food, which of course she can't have, and being unable to get out of the house and do things by herself. It's a strain on her.

It's at least as much of a strain on me, since most of the things she can't get out and do end up in my bailiwick. One does what one has to, but perhaps the hardest thing is not being able to help her. Sure, I can cope with the physical stuff -- the TPN care is becoming routine, finally. What I'm having the most trouble with is not being able to comfort her, or calm her anger and frustration.

I sometimes have the feeling that we're both taking turns hanging on by our fingernails while the other grabs on to our ankles. I lost it again last night.

The fact that I'm fighting a cold, and at times can barely breathe, doesn't help at all. The fact that January is a particularly bad month for Colleen -- the anniversary of several deaths -- helps even less.

10:00 pm - Coping?

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.

08:54 am - This space temporarily left blank

I ran completely out of cope last night, about 11pm, in the process of getting Colleen into the bedroom. I think I'm a little better now, but probably still fragile. I lost it several times: gibbering, almost completely non-verbal in either direction, and occasionally sobbing silently and without actual tears. This is going to be harder than I expected. I haven't been that out of cope since one night when the Y.D. was a month or so old, sitting on the floor by her crib at some ungodly hour in the morning trying to wake up enough to pick her up and change her. Maybe not even then.

Taught my son-in-law to make fried matzoh this morning -- the Y.D. is home from school today because she can barely walk with her injured knee, and wanted comfort food.

Meta: note that I've switched tags from colleen-200812 to colleen-200901 to mark the fact that she's home from the hospital now.

I think maybe I'm ok now. OK enough to get through the day; that's all I can hope for at this point.

Current Mood: blank

03:56 pm - Colleen[6]: I can haz Flowr Cat!

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.