Tonsil Exam - From the Bottom

Before:

Ever had a colonoscopy? This will be my first, unless you count the sigmoidoscopy I had when I was 40 when they were ruling out other causes and homing in on a diagnosis of gall stones. I was awake for that one. I got the ask my doc if he'd found my tonsils yet.

Hah! The joke's on him: I haven't had tonsils since I was 5.

This time should be better. They tell me I get to sleep through it.

I've been putting this particular procedure off for years. It was a combination of not having insurance, or having $3,000 deductible insurance, or not having insurance again, and not having another driver to bring me back home. Now that I have good insurance and Steve has moved in, I'm out of excuses. Today's the day.

Of course, this doesn't just involve one day. There's a whole lot of fuss and bother beforehand.

First there's the shopping. You need just the right items to give yourself diarrhea, and it's got to be good enough to leave behind a colon nobody would be embarrassed to have on camera. There's Dulcolax, a stool softener, which supply we threw out after Daddy died since he was the only one in the household who needed it - we thought! Then there's MiraLax, 8.3 ounces of it to be precise. Luckily, the stores carry that as a standard size, unlike the Dulcolax which only comes in boxes of 30 or more. The 10 ounce bottle of magnesiun citrate is also standard. Again, 64 ounces of Gatorade isn't - or in my case, G2 for low carbs. I settled for an 8-pack of 20 ounce bottles, in the blue since you're not allowed anything with red dyes in it for a couple days before the exam. I had the blue when I was recovering from surgery this summer and found it tolerable. I hope after enough time passes after this I will again.

Three days out you need to start monitoring your diet. No high fiber items, and no Olestra. We had Brundy Thanksgiving over here that day, and once you eliminate high carb items and high fiber items, like raw fruits and veggies, there's ... uh, well, uh... turkey?

Two days ahead you stop aspirin and ibuprofin. Since we'd also thrown out the bottle of Tylenol that only my dad used, that was another thing for the shopping list. I fully expect both that and the Dulcolax will sit in the medicine cabinet unused until well after their expiration dates now. It doesn't work as well on my knees as the ibuprofin, but luckily I haven't need to do a lot of walking like I did getting ready for company by cleaning up the house and clearing off the table which had morphed into the all-family dumping station. You are also supposed to start drink lots of sports drink, like 8-10 glasses throughout the day.

Yeah, with what's coming up with that stuff the next day, don't press your luck.

The day before, you switch to clear liquids. Coffee, bouillon, water are on my list. At noon, take two Dulcolax tablets. Nice lunch. I found myself thinking I could just pop into the kitchen and fix myself a... No! Stop thinking that! You can't have any. Whatever yummy thing is left over from Thanksgiving, you can't have it. No turkey, no stuffing, no pumpkin pie (minus crust of course)! Not even a banana sitting on the counter or a piece of string cheese! Stop! Thinking! Food!

So I did the only thing logical in that situation: I started beading. When you are concentrating on a pattern - well, trying, since I had to restring twice for mistakes - you are not obsessing about the food you can't be eating. I'd stopped in at Jeff's (Non Necessities) in Taylors Falls on Black Friday for their 40% off one item sale, and had a bagful of new beads burning a hole in my brain. I even dreamed about stringing one set of them the night after I bought them. So I started with those, reworking the pattern a couple of times ( that was not counted as one of the mistakes!) and wound up with a necklace for me with small round gold tiger eye, larger faceted tiger eye in gold, red and blue, a gold tiger eye leaf pendant, and silver beads necklace. Then I did a jade one, using a large carved barrel bead and a bunch of very small carved round beads, all in tones of brown and black, again with silver bead accents. I was on a roll! I worked out another three I won't describe here, as all of the recipients (X-mas) read this and I won't spoil the surprise. Luckily, I finished the last one just before I could no longer stay at the table.

At 4:00, dump 64 ounces of the G2 into a large pitcher and stir in all the Miralax. Stir some more. And start drinking 8 ounces of it every 15 minutes. All of it. Every drop.

It seems unnecessary for the instructions to warn you to plan to stay near a toilet after that. After about an hour, the stuff started working, coinciding with ending beading. You're still taking the stuff, setting the kitchen timer for the next 15 minutes, and finally just park in the bathroom with book, lap blanket, cup, pitcher, and timer. Oh: and fan on.

I'd expected to find it difficult to drink that much liquid that fast, but it wasn't. However, by the last cup, I was starting to feel less than splendid. It's a good thing my toilet is right next to the tub, because I threw up at least the last cupful almost as soon as it went down, along with whatever else was left from earlier. Luckily, tubs are easy to clean: just knock the hand-held shower down, turn on the water, and hose it all down. All without lifting an inch off the toilet.

So no, I won't be finishing off the unused G2 for quite a while.

Just because you think after about three hours on the throne that there can't possibly be more in your system to clear out doesn't mean there isn't. Eventually I was able to leave the toilet unattended for brief periods of time, enough to watch TV with pauses. By then the book was finished, and I was just not in the mood to start another one.

I managed somehow to get through the night without an accident, but there's still liquid passing, just enough color in there to let me think something is still left to be cleaned out. I've not slept well, and finally decided to get up early and kill time here. But surgery is at 11, and it's just about 7 now. Four hours ahead of surgery you drink that bottle of magnesium citrate. I doubt I'll have time for blogging until tonight. I'll post an "After". Hey, maybe I can then report another smidgeon of weight loss!

Just one question though: after taking this next laxative, how do I then find the time to shower, dress, and get through the drive to the hospital without an embarrassing incident?


After:

Staying awake, that's the issue, long enough to come back and finish this.

The magnesium citrate claimed to have a lemon flavor. I'll give it "acid", but not lemon. And it quickly did its job, producing ample product of brilliant yellow color, but that's not a flavor, or not one I'd want to try. So mark it "Fail" on lemon. We had plans to make a couple stops on the way to the hospital, but after the first change of clothing before even leaving the house, decided it might be prudent to postpone at least one of them. I did hit the post office for stamps, and found out after getting home and sorting through them that our postmaster can't tell the difference between pine and Madonna themes in stamps. Oh well, X-mas is coming and I have friends who'll like to see those on their cards.

It's both amazing and reassuring how many times people asked me to confirm my name, birthdate, and procedure. Occasionally the same person repeated. At least I knew I could expect to get the correct procedure. After all, the view from the start of the procedure is not exactly one that someone can base an identification on. Imagine: "Hmmm, this looks like Heather's rectum."
They haven't started putting vidoecams in public toilets yet, the way they have at ATMs and in convenience stores.

I was offered a chance to use the restroom before changing into hospitals' perennial fashion statement. They kept the scale in there, so I weighed in sans shoes and found myself 5 lbs. under my last weighing. Just how much is real weight loss and how much recovers after the purging ends and eating resumes remains the question. But, hey, I'll take it where I can get it.

It only took two stabs and one nice hematoma for them to get the IV line in the back of my hand, much better than previous tries, say in the last 25 years. And this nurse was thoughtful enough to inject a tiny numbing agent first so I wouldn't feel the needle go stab, withdraw, wiggle wiggle, stab... got it!

I was concerned about my shoulder, since they roll you onto the left side for the procedure, but once I was laying on their bed with an extra pillow, the shoulder never hurt. Not even before the painkillers. Or at least they said they used painkillers. I can testify that they used some kind of tranking agent, although not enough to put me under completely. Dang! I wouldn't have minded missing feeling the procedure. They certainly go through like you can't feel a thing, and I felt the whole herd of wild stallions stampeeding and cartwheeling corners through my gut the whole time. Apparently my grunts and groans of pain were not sufficient to warrant more painkiller, and frankly I just didn't have the energy for screaming. For some reason I was still trying for dignity.

Keeping my eyes closed for most of it seemed to be the way to go, although I did open them long enough to get a clear view of the polyp they found and removed. It looked much prettier on the TV screen than in the little picture they showed me later. It'll take until next week to find out what exactly it was, and even not knowing that, they want me back in for another one of these in five years.

Good luck with that one!

When they finally wheeled me back into my "room", a nook with a curtain, there was finally time for that nap I couldn't quite get before. Or so I thought. They kept waking me up telling me to breathe, "a couple times, Heather, in through the nose, out through the mouth." Well screw that! If the nose is good enough for the "in" part, it's good enough for the "out" too. I cocked an eye at the monitor and noted that my blood oxygen levels were hovering around 85 when they were saying that, with the monitor beeping, so they probably did have a point. But I felt fine, no indication of being low on oxygen. It seems the meds used can slow down your diaphram, "make it lazy" as they put it, and I was warned they'd be telling me to breathe quite often.

Finally a nurse arrived with cranberry juice and two slices of buttered banana bread. (They know I'm diabetic and bring this?) I couldn't have the banana bread until after I started passing gas, so I started right in on it. I qualified. For that matter, I still qualify. Where can all that gas come from? How much can one gut hold when there's nothing in there making more? Well, at least it doesn't stink like "real" gas does.

I also grabbed the book I was reading before the procedure, and was challenged on whether I could even remember what I was reading. Sure, no prob.

Hey, maybe because I didn't get quite enough of the meds in the first place, eh?

I was out of there under my own power just at noon, after being warned it could be much later than that. I felt fine. I might even have been tempted to drive, but Steve was there with his truck and I yielded to everybody else's better judgment. I still felt fine all the way home, including the auto parts store for Steve's truck's tune up, performed by Richard after we got home. Since then, however, I've had two very nice long naps, and trust I can get another one tonight when there's nothing on the agenda tomorrow to worry about other than work.

Oh, and calling up that other insurance company and bitching to them ABOUT NOT HEARING FROM THEIR ADJUSTER YET TO ARRANGE TO GET MY CAR FIXED! Maybe I'll just sic Farmer's on them, eh?

B & O? No!

B & O: it's not a railroad in a board game.

Well, it is that too, just not in this blog. But there's a back story first.

Last Saturday Paul drove his grandfather to the ER. We thought his catheter was plugged again. He wasn't passing anything, his bladder was backing up, and his discomfort level was approaching extreme pain. Since it was Saturday, we didn't call Randy to come out, but loaded him up in the car. We were hoping for some kind of information that would tell us there was more than just a short-term fix. These had been coming more and more frequently, and this was the third in a week. The usual fix was a back-flush to rid the catheter of whatever was plugging it, then letting it drain. It works fine, just isn't permanent. Not even long term, lately. And it needs skilled medical help. But hey, it was Saturday. Randy has a life too.

While they were gone, I did call her, just to fill her in on what was going on. We brainstormed about more long-term fixes, like increasing his catheter size from 14 to 16, thinking maybe that wouldn't plug so easily. She was willing to chat for a while, until her grandson started waking up. Then he needed her full attention. I promised to keep her informed, both as Daddy's healthcare team supervisor and as a friend.

When they left the hospital, Paul called me. Was there a close pharmacy that we had used that would have Daddy's insurance information? Because the hospital is 8 miles east of us, and his regular pharmacy is 17 miles west. Since we had stuck strictly with Target for him, he brought Daddy back home and drove off again. He had a prescription for B & O.

By now Daddy was feeling comfortable again. When he was in so much pain earlier, I'd given him an extra dose of what are usually his bedtime pills: hydromorphone and lorazepam. One kills pain, the other relaxes him. They had done the job - incidentally - of treating his problem, had we but known it. He wasn't having blockages, but bladder spasms. The medications relaxed the smooth muscle of the bladder enough for him to empty it, mostly during transport. An ultrasound in the ER showed an empty bladder. The B & O was prescribed in suppository form for the next times it happened.

So what's B & O? Belladonna and opium! Yikes! Not only does it sound dangerous, there quickly developed other issues with the prescription. First, Medicare won't cover it. They think it's a quality-of-life versus a medical necessity drug. More voluntary than necessary is how I heard it. However, if your bladder is backing up to the point you're in extreme pain and risking a rupture, it's not a necessity? The full price of the 15 pills that were prescribed is a mere $300. It could be covered if absolutely necessary, but....

As a suppository, it's just more difficult to administer, starting with getting him standing up to relocate to a place - like bed - where he can lie full out so we can get to the proper area. Mouth is so much easier.

It's so unusual a drug that Target couldn't get ahold of any until Monday. (Later they called back and pushed that date back to Friday.) Since he'd been having increasingly frequent spasming episodes, Friday might be too long a wait.

The prescribing doctor wrote the prescription out with out specifying the strength of the dosage. It is available in two. And since it's a Schedule II narcotic, every single "i" must be dotted and "t" crossed. So if we were determined to get this particular prescription filled, we'd have to get another, properly filled out written prescription and physically bring it in. We're used to hard copy prescriptions for his Schedule I drugs. It just meant that we'd have to contact his regular doctor, get him to agree this was necessary, have him write out what he thought was appropriate, and have me pick it up. During his office hours. Regardless of where work thought they wanted to send me at that time. With his regular drugs, we call in the refills with a week of dosages left so there's time to play with.

All of that might have been worth the effort except for one thing. The combination of opium and belladonna might very well depress his breathing, something he can't spare these days. If we were trying to hurry him out the door and underground, it might be just the trick. However....

Surely there were newer, better, safer drugs on the market these days to help with bladder spasms.

I told the pharmacist to tear up the prescription for B & O. I'd need to call his doctor on Monday anyway, now that we knew what we were dealing with, and ask for some kind of more realistic drug for his conditions. Worst case, we could retreat him with the same bedtime meds we'd used earlier. We wound up with something called oxybutynin, regularly prescribed for bladder spasms, though usually the kind that cause incontinence. 3 pills a day with meals. $3. A very slight risk of sleepiness so he shouldn't operate heavy machinery.

As if!

On Tuesday a doctor from the ER called us to let us know he had a UTI. Technically, 2 UTIs. The cipro, his latest antibiotic he took for respiratory issues, wouldn't touch either of these, but he prescribed something that would work on both the pesky bugs infecting his bladder this time. So Tuesday night I went back to Target pharmacy yet one more time to pick this one up. Another $3. 3 pills a day with meals.

And the little coupon they gave us with the register receipt this purchase gives us a $15 Target gift card with our next new prescription we bring to them. I got a new one at the beginning of this month. Daddy got 2 new ones this week. And now they give us the coupon?

Hooray!

I'm not quite sure why I felt so jubilant leaving the doctor's office Wednesday. It was the follow-up appointment with her after, well, everything we'd talked about at my first appointment since getting insurance in April. We went over the hysterectomy, the allergy shots, my knees, the diabetes progress. The labs were back, I'm taking a new med, and there was lots to discuss.

We started with the fact she's leaving family practice to go into geriantology (sp?). Hey, maybe someday I'll be old enough to get her back again. Anyway, she discussed her coworkers until I was comfortable making a preliminary choice for her replacement as my primary physician.

We discussed labs and how often I need to repeat the tests, assuming the numbers are within normal ranges. I'm thinking I'm likely to lose my insurance again next year, due to the state budget changes, so I'm planning ahead on what to do before year's end and how to most economically schedule upcoming care. There will be labs again before year's end plus an appointment with my new doc. Allergy shots will continue, so I'm cramming in what I can on the fastest schedule possible for this year. Surgery is done, no follow-ups needed there. The knees will be ignored until Medicare kicks in. I got my flu shot and, after checking to make sure it's covered by the insurance, a shingles shot. (Not only did Daddy have to suffer from it, but Mom's sister got it as well, so I'm prone to it on both sides of the family.) Not having to face that myself was part of the relief I felt after that visit.

Remember I said there would be questions on the new medication? I was mostly referring in that comment to needing to inform my doc I was diabetic before taking a medication ordered because I am diabetic. I asked, she answered, and somehow after a lengthy explanation, I've decided I know nothing more than I did before. Perhaps just poor choice of wording on the label. Anyway, it's not actually a precautionary note.

What was a precautionary note was the bit about muscle aches. It happens in about 1 in 10,000 people. She said I'd be able to tell for sure if that's what was going on: if you take the kind of muscle aches you get from influenza, add getting hit by a truck to it for the intensity level. What it means is that your kidneys are failing, a protein is not getting metabolized, and you should immediately stop taking the statin drug, and have somebody take you to the hospital.

You won't be able to drive yourself.

One possible way to prevent it happening is to take something called Co Q 10. Co for co-enzyme. It helps metabolize that protein. Available OTC in the vitamin section. Oh, and for those pains in the feet? Not likely - though remotely possible - related to the diabetes. More likely a neuropathy, like Mom had. Take magnesium. Also available OTC, same place. So now there are two more pills lined up for their morning dispensing to swallow with that morning cuppa.

Speaking of the labs, the A1C is down to 5.6. Normal! For at least the last three months, the diet is working to keep the blood sugar levels down. Obviously I test the drops of blood to get readings at particular points in time, but this gives an overall. Overall it's good. Normal. Normal is good. Not an excuse to let up, however, no matter how tempting the box of Goldfish is that Paul left sitting out for the last few days. No, better to go buy my own box and take measured amounts with me to work for snacks, instead of the Cheerios I've been taking ever since last April. Yummy, but losing their edge. Switch to Goldfish for a bit.

Not exactly a lab value, but my blood pressure reading was 112/70. Last week at the allergist it was 113/69. That's going well.

Of course, likely that most important reason for the great feeling as I left the doctor's office was the first piece of information gathered. No, not the fact that I've lost 2" of height somewhere recently. That first thing they do, making you step on the scale. I've finally broken the 40 lb. barrier! Uh, that's as in 40 lbs lost. Just in case you haven't been paying attention. In fact, it's 41 or 42, depending on exactly where in the hundredths of a pound it registered at the very first time. I wasn't paying attention further than the first three digits back then. So not only did I break that mystical barrier, the one that's been resisting me for a couple months, but I did it after adding ice cream back into the diet.

Yeee Hahhhh! I can keep eating ice cream!!!!!! In fact, it's time for some right now...

Great News

I finally saw the hospital bill today. Wasn't sure I wanted to open it. Was sure I needed to.

$25,600 and change.

That wasn't the great news part. That came at the bottom. First, apparently the part of the claim that they are denying is the surgeon's bill. That I still haven't seen. After they paid their part of the bill, and knocked down the price on the rest of the bill, the part I was left owing was...

Wait for it...

$1,000. Even.

WHEW! What a relief! I won't have to cash in IRAs, pulling funds out of the stock market at the worst possible time, cashing in CDs before their maturity dates, and generally destroying my retirement plan. As a matter of fact, I was so braced for bad news that I've been taking extra care to keep as much as possible in my checking account rather than paying max on the Master Card or indulging in unnecessary shopping - though I did break down and pick up winter weight PJs yesterday. I'd done such a good job of economizing that there was enough to actually pay the bill.

The check is in the mail.

No? You don't buy that? OK, it will be tomorrow. Tonight it's sitting on the counter with my lunch cooler. Sealed, stamped, the works. Ready to go.

And now, maybe I can plan an extra couple days on the honeymoon trip.

First Outing

Since the screen house is attached to the house, it really doesn't count as my first time outside the house. So yesterday's drive to Wyoming for allergy shots was my first outing since the surgery.

There was a lot of prep involved, starting with a much-needed and long-delayed shower. I'd had one after getting home, but since the dressing I was told to leave on for ten-twelve days stayed wet for hours afterward, despite following directions to towel-wick it dry, I decided I could live without showering until it was ready to be removed. No sense courting infection. But first, remove the dressing.

It seemed like it was ready. Some of the lower edges were curling up and away from the skin, likely from being in more sweaty areas. I started there, slowly peeling off tape, until the whole gauze pad - nasty! - was removed. I found out three things: the tape removed some skin, it was the medical adhesive I'm allergic to, and there was a solid wall of overlapping tape strips over the actual incision yet to remove. The hospital had sent me home with three packets of wipes to remove the adhesive, so woefully inadequate that when Jessica offered to head to the local pharmacy and buy a box of them, I gratefully agreed. I think I ultimately used about a third of the box. I'm still reacting to having the stuff on my skin for that long, but that's just one of a myriad of itches I can't do anything about right now. Hardly noticeable in the bigger scheme of things - until I try to go to sleep at night, when each one magnifies without the distractions of the day to gigantic proportions to plague me.

Once everything was off, I discovered something else. I'd thought they sliced me open from pubic bone to navel. Nope. Didn't stop at the navel. Just went alongside and kept going. And apparently one of the stitches at the navel hadn't held. There was a gap, straight on one side, curved on the other, nearly an inch long, not healed over and oozing. Nasty!

Time to call for basic how-do-I-treat-this? information. My own doctor's office wouldn't even address the issue. Talk to the surgeon. So I did, and got the questions to assess the opening over the phone. Obviously too late to re-stitch. The ultimate was if it isn't oozing, leave it open to the air to finish healing. If it is, put a plain dressing over it to keep stuff out until it stops, then leave it open. And yes, showering is still OK.

Good! We had large dressings, with adhesive I was not allergic to, and I could buy more after the allergy shots. There was a whole list of errands.

I woke to the alarm for the first time in nearly two weeks, took care of the dogs, got Daddy up, and grabbed my shower. I was already exhausted. After a small break, I collected what I needed, got Paul up to fix Daddy breakfast, and got in the car. Whew! A comfy seat! There just isn't one in the house that doesn't get me saddle-sore and squirming after all this much time sitting. The car is much better, but still not perfect, and after this much time out of it, was causing problems by the time I got home again. I felt just fine driving, although generally weak. Hit the drive through for a breakfast sandwich - been so long I forgot to have them not add cheese (blech!) - and ate on the way to the hospital where the allergy clinic is.

While it took actual effort on my part to walk all the way in, even stopping at the bathroom, I had no problems. Walking out was another matter. I had to stop and rest partway through the lobby, rest again once in the car. I did take one small detour - two feet, actually - on the way in to stop at their scale. It's official: I'm down a full 35 pounds now since April!!!! I'm not sure it shows: the belly feels as bloaty-big as it did before surgery. It's just not solid anymore.

Was I going to actually be able to go back to work on Monday?

Next stop was the pharmacy, so I asked the pharmacist what she'd recommend I do besides taking iron pills to speed my recovery after so much blood loss. I'm pinking up again, but still feeling weak. She recommended Gatorade. Really! Maybe I was also needing to replace electrolites, since I hadn't been eating or drinking much. So I added that to the cart, after spending over twenty minutes reading labels. Once back in the car, I downed a small bottle, and started perking up again. More errands to run, none of which required actually leaving the car, and I arrived home still feeling fairly perky. Of course, with my 10-lb. weight restrictions, I let Paul bring in the bags from the car. Perky though I was, I went in my room and took a nap.

Had another bottle in the afternoon, maintained my feeling of increased well-being, finished the book I was on and started the next on in the series, and still took an afternoon nap.

Am I really going to be able to go back to work Monday?

Saturday will be a real test. It's auction day, over in Anoka at their fairgrounds. Doug has promised me a platform to sit on, rather than rolling around the room with the merchandise, and a computer (vs. paper) auction. I'm sincerely hoping to give him a good performance through the whole thing. I figure get there early enough to grab a morning nap in the car, get help hauling my chair and scooter out and setting them up, take more Gatorade, and maybe nap again before driving home.

Now to figure out what food to take, and when to eat it. The blood sugar levels have been kind of wild since the surgery, partly from no eating and no exercise. This is a month I have to keep track religiously, with an appointment at the end of it to monitor how I've been doing. It'll be interesting.

But seriously: will I really be able to go back to work on Monday?

Getting Ready for Surgery

There's a lot more to it than I thought. I expected the pre-op checkup, of course. In case anybody wasn't sure, I passed. I'm healthy enough to find out just how sick I might be. Ironic, huh?

I couldn't get in to see my regular doc, but the clinic got me an appointment with another on the staff. After checking everything out, ordering labs, x-ray and EKG, he offered to pray with me at the end of the appointment. I declined, saying he could if it made him feel better, but he's not the one doing the surgery, so him I'm not that worried about. If my surgeon wants to pray, and it makes him a bit better prepared to do his best job, then go for it by all means.

I'm more concerned about what kind of music he likes in the OR. If I'm really lucky, it'll be classical, not rock or country western or jazz or.... Remember, they say even if you're unconscious, your ears register what's going on, even to the point of waking up depressed if negative comments are made about your condition on the table. So, Beethovan please, or Mozart, Rachmaninoff, Rodrigo, Vivaldi.... Or maybe ear plugs, eh?

Steve's pre-surgery orders were different from mine. Nothing about diet, just the nothing-after-midnight thing. The gave him some special antiseptic wipes to use the night before however, which still makes no sense to me. He was to bathe, then wipe down each limb with one and toss it, same for the torso. What was the point? All the normal bacteria were in the environment he remained in for hours afterward, including the ones on the clothing he dressed in afterward. He still got "sterilized" just before going in to surgery, as well as sterilizing the cutting field before the first knife cut.

I still don't get it.

I did get orders to stop taking ibuprofin and low-dose aspirin for 5 days before surgery, in other words, starting the next day. Ooohhh, fun. I get to work without any painkillers helping my knees? He did say I could take Tylenol, but that does liver damage in high doses, and I never found it helpful before. I was told for 5 days it wouldn't matter, as long as I took no more than a total of 8 extra-strength pills, spread out 2 at a time , 4 times a day. I've been doing that. I agree that there is a need to keep my platelets as sticky as possible. Don't want to lose any extra blood on the table. The first day it wasn't bad, likely because the ibuprofin and Tylenol were overlapping a bit as the first wore out of my system. I did note my blood sugar levels have been lower these five days given my usual eating patterns, and wonder how much ibuprofin has to do with it. I know it kicks up the blood pressure a bit, but never heard about blood sugar levels.

I still need to pack. They need my photo ID, my insurance cards, but leave the billfold home. Take off my rings, and bring no valuables. (So what do you call my driver's license?) I was given printouts of my xrays and EKG, along with a three-page medical history summary to bring. The doc was to fax these over to the hospital, but these are in case they don't connect. I'm bringing books, and a case for the glasses I'll need to read them. Toiletries are coming along, plus my cell and charger. (I wish I could give my cell to one of the OR nurses and ask for a picture of what they take out. Doubt it'll work.) The blood sugar test kit comes along. It'll be interesting to see how it goes with the combination of fasting, IV lines with whatever, and hospital foods. They said loose clothing (duh!). I'll wear out what I wear in, since the two hours I'm in it will hardly get it dirty enough to need changing, even the undies.

There was a call from the hospital OR staff explaining all the possibilities for parking. Not really necessary since I'll have Paul drop me off and go. He's looking forward to shopping at his favorite bookstore in Minneapolis as long as he's down in the cities and taking the week off work. But the whole call was necessary because the circle drive at the front entrance will be under construction. I could have him drop me across the street and walk in from there but there are steps, and I'm not planning on doing any since I'm not supposed to be taking anything by mouth after midnight tonight, so no painkillers for the knees. Oh, but then they changed that to mean I still take my blood pressure and allergy prescription meds. Just as little water as possible, please.

And then they changed it further to remind me not to eat anything the day before. That's today. Liquids only. The surgeon never mentioned it. Oversight? Or skipped due to the diabetes? But since the hospital staff mentioned that this doctor always requires it, I guess I'll work on compliance. Of course my definition of liquids includes yogurt, since that's just milk with bacteria added, and I just happen to have a supply socked in. I think pudding qualifies as a liquid the same way. Coincidentally, I have that too. Cottage cheese might be pushing it, however. All the other liquids in the house are extremely low in calories, so I'll be monitoring the blood sugar pretty closely today. After all, if it hit 83 on Friday with a normal diet, well.... Otherwise, coffee, tea, boullion, water.... BORING! At least I cooked the turkey for lunch yesterday so I got two meals out of it.

Steve joked that he wasn't going to call me today, that I'd be too cranky to talk to him. Well, he's part of what keeps me from being cranky. And yes, he already called. He's recovering in the one nursing home in Cokato, getting physical therapy for the knee. Today the dressing comes off, and he's looking forward to that. The knee implant feels more stable than the loose implant it replaced, so he's optimistic for a full recovery. We'll be recovering side-by-side, a hundred miles apart. I'm the lucky one who gets the two dogs, however.

It's time to go strip the bed so there are fairly clean linens to come home to. I won't want to do it when I get home!

Revision

I'm still feminine enough - no, make that human enough - to change my mind. I decided not to wait quite so long to see the oncologist. So I'm heading in on the 21st.

Partly it's because it's twanging on a nerve or two somewhere, and that signals to me that something's changing, perhaps even growing. Not necessarily a good thing.

Partly it's because the Minnesota shutdown can't really last forever - can it? - and if the Republicans win, I won't have to worry about a cap to my health insurance. The new cap, their style, will be zero. They want to eliminate Minnesota Care. (Along with Meals on Wheels, and a few other pointless programs because all they do is keep poor folks alive longer to bother them.) Right now a judge says they have to continue my coverage. If a budget agreement is reached the way the Republicans want, I'm SOL. So hang there, Governor Dayton.

Progress, Dead Ends, and The Elephant In The Room

So, it's been over two months now since I got health insurance and started setting up appointments. Much has happened since then, and much not. Most has been written about, but one thing not. Yet.

The allergist diagnosed my dermatographism as a symptomatic expression of underlying allergy(-ies), tested, and found a bundle of things to avoid. Some of that is possible. Most, not so much. After some thought, I decided to go for the allergy shots, which actually start tomorrow morning, and go Monday and Thursday mornings for a while. Three shots per visit. Wheee.

They cause their own "little" side effect, and I'm not talking about the possibility of reaction to the shots, or even my decreasing availability for work causing lessening of income. After ordering having them made up, I was discussing with their office how much individual shots would cost if the ever-looming possibility of a government shut-down becomes fact on July 1st. My insurance is, after all, sponsored by the state. (An alternative scenario is I could get kicked off any insurance if the legislature budget goes through as written.) She thought about thirty bucks a piece, which is a strain but doable, especially if any shutdown is brief. Then she threw the zinger at me: it's formulating the shots themselves that costs thousands.

Thousands!?! Oooohhhh. Ummmm, maybe it's time to check how much of my $10,000/yr. insurance budget I have left. I figured this was one of the two things this year that I could take care of. There are already enough dead ends.

Getting the fibroid evaluated cost a visit to the OB-GYN, an ultrasound, having a radiologist read the scans, and an option for shrinkage treatment with surgery to follow in a few years when Medicare kicks in. The main problem with that treatment is that it is standard for it to require an overnight stay in the hospital, a very sensible precaution in case the wrong arteries got blocked somehow, but all by itself busting my budget. So, no go there. Keep carrying that football around, watching it grow. Meanwhile, a nice chunk out of that ten grand.

Getting the knees evaluated involved an orthopedic visit, X-rays, and a recommendation for surgery which also is a budget-blasting $60,000, give or take. So, live with them for another few years. Another, expected, dead end. Another chunk of the budget spent.

The last thing I'm dealing with, and have been since three days after my original physical when the labs came back, is diabetes. This at least is cheaper to treat. So far it's been two nursing visits, diabetes education on diet and a meter kit for stabbing my fingers three times daily and reading the blood sugar levels from a blood drop. The lancets and test strips need to be renewed by prescription, and there is an increased cost in food because the cheap carbs have to be avoided, but it has to be dealt with - forever! - and I'm doing it.

Actually, I'm doing a much better job of dealing with it on a dietary basis than I am in coming to terms with it. Mom always used to nag me that if I kept eating the sweets I love, I was going to get diabetes. Though my nurse tells me that's not strictly true, it still feels like a shaming punishment from Mom that I managed to cause myself. But I have developed a basic diet that works well, and occasionally try adding things into it that might or might not work, and getting the instant (2-hours) feedback that tells me when I've screwed up. For example, a 6" Subway is supposed to fit in, but the test strips tell me that they're pushing it. Don't do it often. Naan is out, since the allotted amount is way too little to consider anything but a hardship as a meal, and the pashwoori naan is too sweet to even consider trying, though I love the flavor. The beef-filled naan isn't worth eating. When I go for a burger or hot dogs, much of the bun is left out, which is OK unless I had in mind something that would hold a whole slew of condiments.

It's a lot of brown bagging, and my hours translate that into simple, easy, no-thought, no-cook, easy-measure foods. Cottage cheese is king. One carton covers two meals with fruits stirred in. Hence my recent expertise on what is good and what not. Cheerios are still OK, one of my favorite snack foods. Of course, that could and used to mean half a box if I was watching TV and not paying attention. Now it's a half-cup serving in a leftover container packed as mid-morning and mid-afternoon snack. Baby carrots are not supposed to count as a starchy veggie (who's kidding whom here?) but my test strips tell me that they seem to accentuate the carbs in anything else I eat. I do have to go shopping at least twice a week, since fruits spoil quickly, and there's only so much room in the 'fridge.

It's a good thing I don't drink my carbs. For years it's been diet sodas, diet lemonades and fruity teas, water, and coffee. Morning coffee turned over a year ago into morning mocha, but I found a cocoa brand months ago that offers a good sugarless variety, 1/2 carb unit the way I do it, and still makes good mocha. I found months ago that I need a little something to get my stomach to accept the plethora of pills I cram into it with my morning cuppa, and besides, this is my daily allotment of chocolate, a necessary ingredient in quality-of-life. Since I have my mocha first thing and delay breakfast till about 8:30, I can still get a full set of carbs in for breakfast. That's 30-45 grams. You try reading labels to see how it works!

I'm supposed to have a bedtime carb. Many days I'm just finishing supper in time to run a test strip before bed, and a late carb just wouldn't get tested. So I choose no snack, a slice of meat, or if it's early enough, maybe a slice of toast, possibly with margarine and garlic. Hold the garlic if it's raisin toast.

The reason for a bedtime carb is that the liver tends to decide by morning that there's not enough sugar in the bloodstream and releases some of its store, shooting blood sugar levels up. It doesn't seem to happen to me. So I don't take the bedtime carb as a religious mandate.

One side effect of the change in diet is its effect as a diet. I've been losing weight, slowly but surely. Steve noticed, as did Steph. Apparently mostly it's around my middle, something greatly to be desired, but not really noticeable until I stand up. However, the uniform man-shirt I wear for work now buttons at the bottom button, and those are designed to taper in where we girls taper out. Monday I go in for a weighing on the original scale from 2 1/2 months ago, and find out if all these different scales in all these different offices are uniformly set. I figure it counts more on the same scale. If all are equal, two weeks ago it was 14 lbs. down. Or 29 lbs. less than my overall max.

The good news here is that I can pretty much monitor the blood sugar and treat the allergies on an ongoing basis if the state shuts down or I've exceeded my insurance limit already. The surgeries I already figured out will need to be postponed, unless I happen to win the lottery.

Yeah, that'll happen. Of course, the lottery office also shuts down July 1st if the state does.

But the two most important things will get taken care of.

And Koda can come back and sleep in my room again, after a few months. That's not to be sneezed at. Hopefully.

First We Choke It

Yesterday was my visit with the OB-GYN. I like her on first impression, though I'm a bit amused at her dismissal of the idea that my regular doctor could actually feel my fibroid and make a declaration on its current size. Well, she was the first one to detect it on exam, and the ultrasound years ago confirmed her estimate of size back then. Heck, even I can feel it sometimes while lying relaxed on the bed.

I figured walking in that I was just going to hear that I needed major surgery to remove it, after a confirming ultrasound (set up now for Thursday), another something I can't afford, like knee replacements, and I'd be spending the visit arguing about how long I could live with this thing before Medicare kicks in.

I was pleasantly surprised.

By now everybody of a certain age has likely hear of angioplasty, where they go in through the arteries with a balloon on a "snake" and inflate it to compress plaque and open up a clogged vessel. If you haven't needed it, you know somebody who has. Well, what she plans for me is its counterpart. It's called uterine artery embolization. They - actually somebody who's an interventional radiologist - would go in through the femoral artery and release tiny pellets to clog the small arteries that feed blood to the fibroid. Choked of nutrients and O2, it shrinks.

That's the polite way of saying the tissue dies off. It begs the question of how much how soon, and am I suddenly carrying around a large chunk of necrotic tissue, or is there a way to have it progress slowly so there are no or minimal side effects? At any rate, it shrinks way down and once Medicare kicks in, I can decide whether to have a hysterectomy.

There also is the question of what happens if one or more of those pellets detatches and goes wandering elsewhere.

I've got a referral to have it done, but now I need to research where and with whom, since it's not done at my hospital. I need to find out who does, and see who's covered by my plan. The literature she sent home indicates it's normally an overnight hospital stay, so there's transportation and juggling of schedules as well. And I will have to pay a percentage of the bill.

Even with all that stuff to figure out, I left her office much more optimistic than I walked in.

Allergies, Then and Now

Another day, another doctor. Sighhhhh... Today was the allergist.

As I grew up, to me allergies meant poison ivy. I'd heard not everybody was allergic to the stuff, but I was just one of the lucky ones. Now I know I'm one of the lucky tens of millions. I learned to avoid the plant while wandering around on the resort, but it seemed to jump out and get me anyway, no matter how careful I was. Turns out the dog roamed around the resort too, and petting her defeated all our other precautions. About the same time we moved into town, I was put on an experimental regimen of poison ivy allergy shots. I thought they worked, still not connecting exposure mechanisms and the odds decreasing with "civilization". Next time I was exposed, it was just as ugly and itchy as ever.

I thought I might be allergic to chocolate, since I was binging on the stuff and breaking out in pimples at the same time. A doctor disabused me of that notion. Just as well, since I'd never give up chocolate willingly. Perhaps a world-wide shortage bordering on extinction of the plants....

My weird reactions to a couple of medications are listed under "allergies" on my chart, but the symptoms don't match any typical allergy reactions. I shrug it off and just assume everybody knows it still means I need to stay away from them and allergy is a handy word used as a shortcut to explain why.

As a result of all these experiences, I spent my first 40 plus years believing I had no allergies. Then I had a "cold" that wouldn't go away, and finally knuckled under to go in and see a doctor. I was informed that I had asthma and needed allergy testing. Asthma? Me? I don't wheeze. I'm not short of breath. OK, yes, I'd been coughing for a couple months, but asthma?

The doctor who did the testing was a bit cocky, absolutely sure I was going to turn out to be allergic to my cats or dogs. I was just annoyed by her assumptions, and felt thoroughly vindicated when the results were completely negative. But my "cold" was still there, so she progressed to the patch test. They glued a patch about 5" x 10" onto the middle of my back between the shoulder blades, told me not to scratch, and come back in a few days. By then I was starting to itch. As soon as she peeled of the patch, she immediately knew I was allergic... to the medical adhesive used to keep the patch in place! It was so bad she had to put the grid template up against my back, blocking out all the in-between spots that were red and swollen, to see what was going on in the little squares where the allergens were. Aha! There was one: nickel. Seems it goes along with being half Scandihoovian. I immediately applied clear nail polish to the metal parts of my watch and eyeglasses where they came in contact with the skin.

But there was much more going on than that. At the time I was breeding tropical fish. One of the best ways to do that is to feed high quality foods. Forget flakes and pellets, and shell out for critters, like bloodworms. Frozen are best, but dried will do as second choice. We were feeding both. You're wondering what bloodworms have to do with a nickel allergy, right? Well, to commercially cultivate them for sale to fish hobbyists, you put them in an environment rich in nutrients and waste, aka sludge, which concentrates such things as heavy metals, including nickel. So the worms are rich in it too. Skin contact with frozen ones produces contact dermatitis, and you're up for a heap of misery if you have the allergy and absently rub the corner of your eye before you get to soap and water. The dries ones are another issue. The crumbs get kicked up into the air, breathed in, and create the neverending "cold". Aka asthma. Since I was the primary family member taking care of the fish at that point, scratch that food source, meaning scratch that hobby.

Later experiences showed that bloodworms in a normal lake or pond environment don't have the nickel concentrated in their environment and I don't need to avoid them. So we can still have goldfish in the backyard ponds. And they'll breed with the changes in temperature, no expensive foods needed.

Some time after all that died down, I started noticing my arm would itch when I'd finished carrying a heavy box, usually braced on my hip with pressure on that arm. Cardboard boxes were the worst, since the edges of the cardboard added abrasiveness to the mix. I decided to mow the front lawn one day (back when I still had knees) and by the time I finished my hands were so swollen and sore I couldn't move them for hours. Something was weird. I was allergic to work!

I didn't have the terminology for whatever was going on then, not even to recognize it as an allergy. But I lucked out. My daughter had married a super fellow who, among his many wonderful attributes, happened to have a mother who had the very same thing. She'd been to her doctor and found out that it was called dermatographism. It's an inappropriate histamine response to pressure or irritation of the skin. Call it hives, because while it's shaped to the offending irritant rather than a cute little circle next to another cute circle next to.... well, it's the same mechanism.

Benadryl didn't help. It was very good however at putting me to sleep behind the wheel. She was taking something better, but I hadn't gone in to my doctor yet to get a prescription, and besides, it was very expensive. Back then I had insurance, but the high deductible made it practically useless. Somebody gave me a Claritin to try at a party, and boy was there a difference! It took over an hour to kick in, but it really did. So I went in and got my own prescription. $83.00! Per month! That hurt almost as much as what it was treating. Lucky me, though, it came off its prescription patent about four months later, and within a year was very affordable in bottles of 60 tablets under a generic label. It's on the shelf with my other must-take-every-day-regardless pills.

How time flies. Today my allergist tells me that was about ten years ago. And the reason I was there today is that it has become less and less effective. I tried calling up my co-mother-in-law to find out what medication she had switched to, and as a result tried Allegra. No difference. I tried that one whose name starts with a Z - the name escapes me - and again, no difference. Both are now off patent, and thus somewhat affordable. But generic Claritin is even more affordable and since the others don't do much, why spend more? I'm back on Claritin. My regular doctor informed my there's something better out there new, still on prescription, so I went in to see if I could score that. That's all I wanted, just score a better pill.

They sent out a questionaire about all kinds of possible environmental allergens, 5 pages worth. I glanced at it, decided it could wait until just before the appointment, and set it aside. A phone call mentioned that I needed to go off the Claritin three days before the appointment. That was two days before, and I'd already had a pill that morning. Nice timing! Of course, going over the form later that night, I found in the not-so-fine print a whole list of medications to discontinue however many days before going in. Oh, yeah, hey, I guess reading it at the time might have been a better idea. But she thought I might be OK anyway, with the stuff out of my system long enough to find out what I react to.

And that's where we started today. I got a prick of histamine under the skin so they could tell if I was reacting. Then they took my blood pressure, weight, all that good stuff. The BP cuff was really tight, being run by a machine. It took pumping up twice to register properly. By the time they removed the cuff, that arm was already beginning to itch. It was spectacular by the time the doctor walked in, while the site of the histamine prick was just a teeny tiny red spot. Very unimpressive. But now I had something else to show the doctor what I was talking about.

His theory is that people with dermatographic uticaria have an underlying allergy. Unlike red eyes and runny noses, we lucky folks get blotchy hives in reaction to pressure or irritation. He wanted to test me on a variety of possible allergens. I figured I might as well humor him, since I wasn't having to pay for it. So my arms were marked with blue lines and dots, and bits of stuff injected just under the skin in a variety of places. The theory is that I'd react to everything at first, but after about 15 minutes, the initial swellings would go away and any that remained would be what I was really allergic to. Sure, why not?

After several minutes, all I was reacting to was... dogs, cats, mice, dust mites, tree pollen, grass pollen, mold.... I was tempted to disbelieve I could possible be allergic to all those things. Maybe I was just still doing my usual puffy thing to all of the sites. Eventually, however, there were about 5 sites with no reaction, and even I could see a difference.

Next came education about how to get the allergens away from me. They were smart enough to realize that the dog and cat are not leaving, but stressed that I should set up a "free zone" where I'd be most clear from everything for the most amount of time. That meant my bedroom. That meant new pillows with covers protecting against dust mites, covers for mattress and box springs, washing bedding - all of it! - in hot water weekly, using the AC instead of windows, washing after pet contact, leaving my clothes outside my room and showering before bed, getting HEPA air filters...

OY! This is only going to be about 80 extra hours of work a week, right? That's so going to happen. But I did go shopping for some of the things that can be dealt with that way: $200.

There's a prescription - what I came for, right? - but for one of the OTC meds I've already tried, only twice a day since once clearly wasn't cutting it: my allergist's words. When I picked it up, the pharmacist cautiously asked me if I realized he'd prescribed twice a day on this pill, because, "We usually don't see that."

I know. I'm special. Lucky me. I itch.

I need to try that for two weeks. If that doesn't work, there'll be the other OTC to try for two weeks as well. Once those both fail, he can then prescribe the "good stuff", the stuff that costs about $100/month, with some hope that my insurance will then cover it since nothing else works. Those are their rules. Of course, I can take the paper prescription he printed out for me and go to a Canadian website he named and get about 100 pills for $50 while I'm waiting for insurance coverage. It seems to be a common problem.

And I can chose allergy shots, now that they know what I react to. We'll discuss that in a month when I go back.

Meanwhile, I've washed most of the blue lines and dots off my arms. The rows of red spots are still there, and there's still some puffiness with the ones I reacted most strongly to. I'll find out in the morning if they actually go away. The only good part of all those prick tests is that none of them ever itched. Not one. Bless them!

So Much for Optimism

"Well, you're wearing the perfect kind of pants."

Huh? Not that I thought to question what the radiologist was saying at that moment. I was busy taking in the information that I didn't have to remove them for my new set of knees X-rays, and busy moving into this position and that for each successive shot. Finally, though, I had to ask, "Just what are the wrong kind of pants?"

Turns out they'd be jeans or other heavy materials, stuff that might actually show up in the films, if films is the right term these days. They've gone digital, and that format is more sensitive to certain things, like jeans.

Today was my visit to the orthopedic clinic to see what might be done for my knees short of surgery. I didn't know going in what that might cost, but I was pretty sure it wasn't in the budget yet. My regular doctor had told me about cortisone injections and some other type of injections that might buy me some time. That translates roughly to having more months or years of minimal pain so I could stand to put off surgery and still live a semi-normal life, meaning better than I'm doing these days with no treatment. So I arrived with my forms filled out, my insurance cards, my photo ID, and a small dose of optimism.

My pictures were interesting. Even more interesting if they were somebody else's, but they were mine. The doctor pointed out several things. There is no longer anything keeping the knee bones from rubbing against each other. In fact, they're wearing each other down, and it's happening indentically in both knees. One may have had a several year's head start but the other one's caught up. They're so evenly matched that you could flip one X-ray over, reversed left-to-right, and lay in on the other and not tell them apart.

So. Options.

I could do nothing, just like now, and take pain killers and walk/stand as little as possible.

Cortisone injections might buy time with reduced pain, but they carry a side-effect that I can't deal with right now. Maybe in a few months.

The stuff you inject into the joint has finally been studied, and results show what my doctor suspected from his own observations and patient feedback: they work about 4% of the time. 4%! (Are you feeling lucky today?)

Surgery would mean a front incision, folding the kneecap back, shaving off the rounded bone ends to something flat, and capping with metal. Then a plastic disc would be set between them and I'd be sewn back together. Expect about 6 weeks recovery time, not till I'm all better, but until the nerves recover enough that I can safely drive again, as in moving the foot fast enough and hard enough from the gas to the brake and vice versa. About a year to full recovery, if I do my exercises religiously despite the pain. Repeat with the other knee.

Oh yeah, and figure about $30,000 per each. Plus unpaid time off work.

So yeah, I'll go right out and buy that winning lottery ticket that'll make it all feasible. Uh huh.

Needless to say, I left feeling a trifle less optimistic.

Good Medical News

There's good news on two fronts. While Daddy was getting his post-hospital checkup, I asked Paul to have the doctor examine his back for a couple of weird, dark, irregular-shaped bumps that had recently sprung up. I was of course fearing melanoma. I was also wondering, if that were the diagnosis, whether we'd decide to treat it or not. Daddy's spoken several times on not wanting any more surgeries, and there would be too many days when he'd not remember the why of whatever procedures, just the pain. And wouldn't he die first from something else anyway at this point? But the word came back not to worry. That's not what they were.

Further, whatever they were, one had crusted over, dried up, and disappeared except for a red spot on the skin surface. I'd thought they'd done something to it at the hospital and hadn't bothered to mention it to me. Whatever.

The other good news is mine, and good in three ways. It was mammogram time again - OK, way past time due to lack of health insurance - and I scheduled it for last week. The first piece of good news is they use digital mammography (in a mobile truck) and this means when you get your boobs mashed, this way they don't have to mash them quite so hard. It's actually uncomfortable, not painful the way it used to be. And speaking of pain, I requested a chair for the procedure and got it! She argued with me that I'd only have to stand for 5 minutes. I told her that was 4 1/2 minutes too long. She rolled in the chair from her mini-office, the only one in the unit, and I returned the courtesy by returning the chair as quickly as possible. The final piece of good news was that the results were perfectly normal.

As expected.

I've never thought that breast cancer was a worry. True, Mom developed it, but I'm convinced that doesn't count. Not because she waited until she was in her 80s to start, and it was removed and had no recurrances. No, it was because I'm convinced that the only reason she developed it in the first place is that she was receiving HRT for years at such high levels that she was still having periods until the diagnosis, when she stopped them cold turkey. Not only that, but due to her wearing a pacemaker by then, and being unable to receive radiation treatments, she was put on a hormone blocking drug that cleaned all the estrogen out of her system. Talk about instant menopause! If you're going to do that to a system, you may as well do it to one young enough to tolerate the symptoms better!

I've never considered HRT as a desired possibility for me. Besides, I breezed through menopause almost without noticing, except for ceasing to need tampons, Halleluiah! Hot flashes? What hot flashes? I did notice a handful of what might be considered warm flashes, but I couldn't be sure. And since those pesky periods lasted until the age of 57, my body might as well do me the courtesy of sending them away gracefully!

Changes and Other Themes

Epitaph

Elizabeth Sladen will be missed. Don't worry, I didn't recognize the name either. The clue "Dr. Who" helped, and for even occasional fans of the series, Sara Jane Smith is a much more recognizable identifier.

I didn't become a fan of hers, or the series, until recently. Part of the problem was that my Ex, back before he was my Ex, tried to shove it down my throat. The basic attitude was anybody who is worth anything will like what he likes, and it doesn't matter if it comes on late at night when, after a full day of kids kids kids, the only thing I'm capable of appreciating is sleep.

Yeah, not sex either, at that time of night.

But recently she was in a spin-off that I caught a bunch of episodes of, "The Sara Jane Adventures." Sure, they were juveniles, but good romps nonetheless, and left me wanting to look up some of those earlier episodes. You know, someday, when I have time again.

* * * * *


Losing My Non-Tan Line

I used to be able to look at my left wrist and see just how white my skin is when it doesn't see sun for dozens of years. Even though a leftie, that's where I wore my watch. It's where everybody else wore theirs, so it just seemed that natural place for it. Nobody ever bothered to tell me that it goes on the non-writing hand so you can see it at the same time you're writing. Oh well.

But I lost my watch a couple months ago. In fact, just before I broke my hand. Then of course there was not room on my wrist for any watch to fit, should I actually have located it. So I got used to doing what the kids are doing these days, checking the cell phone for the time. (At least I know it's accurate.) It feels weird, however. And I still find myself checking my wrist for a watch that no longer resides there. At first I'd joke when I caught myself doing that in front of a customer, when I needed to enter the time of a pick-up or delivery on the log, that my watch just didn't fit any more. True, though I never had occasion to actually verify it by trying a watch over a bulky wrapped wrist.

After a couple weeks, when I'd change the wrap in the evening or morning, I'd notice that my non-tan line was disappearing into a vaster whiteness that comes from having all the skin protected from the sun. It was still perceptible, but only just. A couple weeks ago when I finally quit using any supports (I heal bones fast, I guess) on the hand, it started to darken up again. Of course, that's relative to me, not to any usual standard of dark: there's too much Scandinavian in my background. Still, there was a slim line that was slower to darken than the rest. Mostly, it's gone now, but not completely.

* * * *

Just Another Night in Paradise

It started when I arrived home from work. Daddy started in on how we needed to keep a light on in the entryway so the people who were still coming could see. Even though we told him several times that nobody else was coming, he insisted.

After we finally distracted him with his nebulizer for the evening, he started back in on lights, but this time insisting that we needed to keep them off when we weren't using them, and needed to shut off everything we could, In fact, we should all go to bed right now and turn off everything.

Yeah. Sure. Have a good night, Daddy. See you in the morning.

It should only be that simple.

I had, for several weeks now, started getting some sleep at night. Generally, one awakening needing attention, and a bit of talking to him persuaded him to stay in bed and wait for me to come get him up in the morning. I'd hear complaints about he was awake all night "for days and days" and "it was the longest night ever!" But he stayed in bed, and I got some sleep.

Last night I was just going to bed when he started calling. He wanted to know what we were going to do about all the babies.

Now last time he dreamed about babies, it was a genuine nightmare, the first actual one I've seen him have. There were all kinds of women chasing him, upsetting in itself for reasons known only to him, and they either were going to or had already started popping out babies. This upset him even more, and was one of the few times he seemed to be relieved that this was only a dream. Mostly he takes that as us calling him a liar if we tell him whatever it was, it was only a dream.

This time I worked for a while to persuade him that there were no babies, and he'd been dreaming. My level of success was emphasized by his interrupting me periodically to ask if the kids had started having babies yet, and what were we planning to do with all of them?

Finally getting him settled in again, I went to bed. Half an hour later he was yelling for me again, on the same topic. I went through another "usual" routine for us lately of asking him to please be quiet because it was the middle of the night and the rest of us were all trying to sleep. He apologized profusely for making noise, and settled down just about long enough for me to return to my bed and pick it up on the baby monitor again.

Oh goodie.

I was tempted to turn it off so I could sleep. Instead, I decided to hope it wore itself out and he'd go back to a very quiet sleep for a couple hours at least. It was a good choice.

In another couple hours, he started calling for help. Loudly. When I got to his room, Paul was already there, and Daddy was standing with his walker next to the dresser with his legs all twisted and crooked. He'd knocked his glasses from the dresser onto the floor and would likely have broken them, either with a foot or the walker foot. Paul was asking him what he thought he was doing and where he was going. I was past patience for that and just sent Paul back to sleep. Besides, I heard all about it as I helped him straighten up and work his way backwards to his bed.

First there was his I'm-such-a-charming-little-boy look that I see so often this time of night, accompanied this time by his telling me how much he loved his furry little animals.

That's nice. Sit.

Then there was apparently some dream where they had to be all put back in their cages, and he was the one to do it. Because I hadn't.

Oh. Too bad.

After about twenty more minutes, he was settled back in bed, with me asking him to please stay in bed and try to remember that anything he dreamed that made him get up was going to be just a dream so he didn't need to really get up. It was the middle of the night. It was dark. And cold. And we were all sleeping.

Trying, anyway. It would have worked better if he could actually be reasoned with at that time of night. But it was still going to be one of those nights. He chatted on for a while, and I managed to finally fall asleep, when...

"Help! Help! Help!"

I fought my way into the room with eyelids so sandpapery that I couldn't quite open them all the way, relying on my knowledge of the house and hope that nobody and left something lying out where I'd stumble over it. This time he was sitting on the far side of the bed, with the blankets all thrown off onto the near side floor. He was down by the foot of the bed but still partly wedged between the bed and the mattresses of the old bed standing along the wall. There's just no other place for them, and someday I'm going to reclaim that room, my bed, and my super-nice mattresses. Anyway, the only way for him to go was up, around the foot of the bed using the walker on the other side of the room, and back into bed from the near side. My only comment to him, other than directions for how to move, was, "I don't even want to know why this time."

When the alarm went off this morning, I just shut it off and went back to sleep. He was, after all, quiet at the moment. Not even doing the not-so-subtle loud sighing and yawning he does when he's "patiently" waiting for me to get him up, even if it's 3AM. I needed sleep and I took another hour, then quickly made coffee, set up the nebulizer, and woke Richard to take over morning wake-up. Of course, he was already sitting on the side of the bed, ready for his third excursion of the night. I just left to go shower and get myself dressed.

Just myself!

Heaven!



* * * *

Another Right Wing Loon

We don't usually listen to WCCO in the evenings, unless there's a ball game on for my dad. But it was playing last night when I got home, after 8PM. According to their schedule, that's when John Hines is on. Never heard of him, never want to again. Two minutes was sufficient.

His rant was on global warming, or rather, why it's not real. If you're expecting a logical base to his reasoning, well, tough. He had a different kind of answer last night, involving Charles Manson.

Huh? You ask what that creep has to do with why anybody thinks anything about global warming? That was kinda Hines' point, in a twisted way. Apparently Manson came out and made a statement in support of or in belief of global warming. Against all that's rational, it made the news. And Manson being who Manson is, Hines "reasons" that the fact that he spoke for it means it isn't valid.

Now Manson is a very broken clock, but even those can be right on very rare occasions. One just learns never to depend on them. But they're not always wrong. If Manson said water was wet, would that make it dry? If he said grass is green would that make it orange and purple? If he said the earth is round, would that make it flat?

But the biggest question of all is this: why on earth is Hines listening to Charles Manson?

It's immediately followed by: why on earth would I ever want to listen again to John Hines?

No Poker Face

It's never a good thing when, in the middle of you doctor's exam, while she's poking and prodding, a look of alarm flashes across her face. I'm used to cheerful, helpful, explanatory, inquisitive. Not alarm. But apparently she doesn't have a poker face.

It was my first "real" physical in a few years since losing my health insurance. Now that it's back, it's time to explore a bunch of issues, check out progress/deterioration, explore options, all the while keeping in mind the budget limits of the new plan.

We were well into the exam, and this wasn't my first surprise. That was when I stepped on the scale, after setting down the pocketbook and book, removing shoes, 2 cell phones, 2 sets of keys, a pen.... Anyway, I'd lost weight since last year. And I haven't been trying. What I have noticed was my stomach seemed to fill faster lately, leaving me with my usual serving on the plate and having to put some in a leftovers container. I suspect it's related to my second surprise.

It wasn't a complete surprise. I've known for a few years not that I had a fibroid growing in my abdomen, most likely attached to if not actually growing out of my uterus. An ultrasound diagnosed it and they sized it at 11 x 13 centimeters, or about the size of a large orange. Completely benign. I used to relax on the bed on my back and be able to feel around myself and find the thing. I haven't been able to do that recently.

As she started the belly poking, I asked her if she could still find it. This is her cue to go, "Ohmigod, it's the size of a baby!" along with the aforementioned facial reaction. Just in case I hadn't gotten the clue yet, she added, "This could cause you real problems!"

There are several ways to react to that kind of news. There's the calm reflection that it's not anything malignant, so it can be - literally - lived with. There's the noting that, well, I've already lost some weight, and if they remove this, I'll lose more: cool! As well as, here I thought it was all belly fat, but I'll look a whole lot less pregnant when this "baby" goes bye-bye. There's also the thought that this might in fact be the cause of the weight loss, since judging by where her hands were finding its edges, it appears to be more vertical than not, and thus might be pushing against my stomach, thus limiting its available room for food. There's wondering about side effects, since the only other thing I've noticed about having it is that bathroom visits are more problematical and less efficient than formerly, and if I have to spell that out further, tough! No, I'm not short of breath, with a pair of knees that keep me so inactive that I have very little occasion to notice that kind of thing anyway. There's the curiosity of wondering what else she might be talking about when she says it might cause me real problems. And of course there's wondering what can be done about it on my limited budget.

Ten grand a year doesn't go very far, and there are other things needing attention too. I left the visit with a list of 6 referrals for tests and evaluations, one of which is a gynecologist to have this checked out, and find out what my options are. But that appointment is next month. I'll be patient, since I'm not really concerned, despite my doctor's reaction. That "baby" has been growing for over three years, doesn't kick, and doesn't make me throw up 18 times a day, and won't take up the next 18 years of my life parenting.

We can get along.

Back in the Hospital Again

Monday started off with Daddy, finally out in his chair, asking if he'd died overnight and had he reached 100 first? I told him I had to disappoint him on both counts. Well, in that case, he wanted something to eat. As I got dressed for work and Steve started fixing his breakfast, he kept mumbling, something ordinarily that stops once he's up and out of bed and back in touch with the world.

A couple hours later his physical therapist, Kathy, called me. She was concerned because he was still "out of it", and even mild exercise like arm lifts was shooting his pulse up to 115. She didn't even have him get up and walk. Listening to his chest, she heard rattling noises, something we'd not heard for a few months now. Was he coming down with pneumonia again? Or hosting a UTI (urinary tract infection)? After confirming with Steve that he could transport Daddy to wherever I gave him directions for, I tried to call his regular doctor.

Monday mornings are busy time.

I called Steve back and gave him directions to the St. Croix Falls hospital for their urgent care, along with a list of things necessary to do to get Daddy ready to move. It's not a simple process.
In this house, it starts with putting the dogs outside, since you don't know how long you'll be gone, and Steve's basset, Fred, is just barely out of puppyhood. There are outdoor clothes to locate, portable O2 to switch him to, the wheelchair to get him out to the car with after turning the car 180 degrees so the passenger door is accessible, the bag of pills to grab and bring along....

And after he's in the car you have to take the wheelchair back in and bring the dogs back into the house before you drive away. It's still too cold to leave them out for hours.

An hour or so later I get a call on Steve's phone. Expecting to hear some kind of update on Daddy's condition, I'm surprised to hear a feminine voice explaining to me that they've put Steve into their system as well, since he arrived so overstressed and out of breath that they considered him more urgent than Daddy and set him up with heart monitoring.

Did I need to quit work and come up there? No, everything was under control for now. And as it turned out, Steve recovered nicely with no indications of anything but stress, and Daddy was admitted "overnight" with suspicions of a UTI.

When Paul and I stopped in after work that evening, he was convinced he'd spent the last two days (his time sense is totally screwed up, a logical outcome of short term memory issues) on a ship where everybody had been partying down the hall. It had gotten so bad, he said that he'd almost gotten arrested by the police for drunkenness. But he'd walked and walked and walked until he found the door to his room and escaped from all the clamor. Each time a nurse came in he'd ask them which club they belonged to, puzzling all of them. He was concerned that I'd be mad at him and promised not to have another drink for a whole week, although by the end of our visit that dropped to no drinking until tomorrow.

As if.

Medically, they were treating him for a UTI, and hung the first bag of IV levoquin while we were there. The optimistic guess at that point was two days' stay. They were also starting the juggling act with his congestive heart failure, which showed up on the X-rays they'd taken in the ER while pneumonia hadn't. In fact they were impressed with how much better his lungs looked than on his last visit, last Thanksgiving. Yeah, no kidding.

I'd had to stop at home on my way in to pick up his advanced healthcare directive and his DNR orders for them to copy. There were some questions on his meds, the whole bag of which had come in with him. His portable O2 tank had to go home for recharging, now that he was on the hospital supply (set at 1.5 liters, later upped to 2 when his blood-ox levels weren't high enough), so by the time we walked out we were well loaded down with his things. Paul of course got the bottle and his meds, and I got the paperwork.

The one thing that occurred to me, since it wasn't covered by his pills supply and had come up since his last visit there, was to inform them of his swallowing disorder and his need for Thick-It in his liquids. They responded immediately, thickening everything about twice as much as we do at home. Amazingly, he didn't complain.

Tuesday morning when I walked in on my way to work, he greeted me with a demand of where I had been. I explained about sleep and work and how much time I'd actually been gone, and that seemed to settle him down. He's used to seeing me in the middle of the night, so I guess my absence made it seem even longer than the interminable length nights usually last for him.

What I noticed when entering the room was that his roommate was gone. Not even the bed was left. His double room was now a single. I hadn't met the roommate, since the curtain was drawn during the previous night's visit, but heard the nurses talking with him, and knew he was pretty sick. I had warned them that he'd get no sleep at night with Daddy in the same room, and my personal theory is that the roommate was moved out because he needed his sleep. Crowded as they were, they found something quieter for the guy.

Just as I was getting ready to head out the door and sign on for work, the social worker showed up full of questions about his home situation and where he should go after discharge. I knew she'd get no sense from Daddy, so quickly interrupted her with the answers to all the questions she was going to ask about how we're set up and who's watching him and how much assistance he's getting. I've been there before. I fully believe we're taking much better care of him at home than any nursing home would bother to provide, especially the 24-hour supervision. They'd poke their noses in occasionally, on their schedules, not his, and with no continuity of care/information. I already know how blind he is, for example, and wouldn't take him to physical therapy, stand him in front of a chart on the wall, tell him to do what it says, and walk away! That actually happened two years ago, and prompted our removing him from the TCU (transitional care unit) he was placed in well before they thought he was ready to leave. Had we followed their lead, he'd never have gotten well enough to leave.

I heard from Steve just after lunch, when he went in to stay with Daddy for a while and keep him company, reminding him to take liquids and assisting with supper. His first sentence was, "We have a small problem." As he'd walked in, Daddy was sitting up on the edge of his bed, trying to get out. (Somebody forgot to set the bed alarm?) Seeing Steve, he yelled at him,"Get the hell out!" When Steve asked him what was the matter, he grumbled on about he didn't want to talk to Heather, he didn't want to talk to Steve (my brother this time), we were keeping him prisoner and he was going to walk out, find his own place to live, and do as he pleased.

Oh yeah, that's going to happen. Uh huh.

Just then was time for his chest X-ray, and Steve said it took five nurses to try to get him moved. It wasn't that he was combative, exactly, but supremely uncooperative, as if he'd suddenly turned into rubber. Steve didn't report what was being said during this, but I can imagine.

We have no clue what set him off. Likely it was something from a dream. Whatever, there are benefits to short term memory issues. When he returned from X-ray, he was all sweetness and light, his usual self. Of course, now he spent the rest of the day back in WWII. Occasionally he knew he was in a hospital, but he was obsessing about whether anybody had heard the rumors that his whole unit was being deployed tomorrow, and by unit he gestured to the whole wing of the hospital. When I arrived after work, he confided to me that it was likely he'd be gone tomorrow, and questioned each nurse walking in about what they knew. I just informed him that it didn't matter what the unit did; as long as he was still sick, he was staying right here. Well, did I want to go tour the parade ground?

Uh, no thanks.

It's so hard for him to answer the phone. Even if he could see it, which he can't except as a blur, he can't reach it. We've given up trying to call in. So when I get there in the evenings, I call my brother on my cell and hand it to Daddy so they can have their regular evening chat. For two days he said nothing that made sense, but my brother is patient and listens anyway. Even when my dad is more rational, a ten minute call becomes the same three minute conversation repeated three times. Even with those limitations, he remembers that they talked and that his son cares.

Next morning when I arrived, Daddy was sleeping. I do what I usually do at home, sitting next to him and putting my hand on his, and telling him "good morning" to wake him up. Wednesday, he opened his eyes, recognized me, then looked around his room and asked, "This isn't home, is it?"

He's back! Something in his medications has been working. That was Wednesday, and this is Friday. We hoped he'd come home yesterday, now hope for today. The problem is, they're trying to find the right balance of medications to keep his blood pressure high enough to prevent dizziness while keeping his fluid levels low enough to ease his congestive heart failure. The next step in their plan is take him off Flomax, a prostate drug that has low BP as a side effect. With a permanent catheter, it seems unnecessary for him to have the drug.

With that, my growing concern is his muscle tone. He spends nearly all his day prone, occasionally being moved to a chair for short periods, like for meals. Yesterday the nurse stood him up to hold onto his walker for the three steps to the chair, then decided his diaper had a present in it that mandated its removal. Was she prepared for that? No. Was there a replacement in the room? Or a box of baby wipes? Or a medicated patch to replace the one on his backside that had become soiled from stool easing its way in from the edges? No, no, and no. Each required a quick trip for supplies, while Daddy just stood there. Even at home he doesn't just stand at his walker, and my concern for him grew, especially as he was showing his growing distress from standing. We told him to sit when he needed to, and finally he did, about two seconds before the nurse returned from her latest supply run. So of course she wanted him to stand again without much rest.

The diapers supplied in the hospital are very flat and fasten with two tapes on each side. They are perfect, I suppose, for bedridden patients. Not so much for the mobile ones. I offered to help hold it in back while she fastened it in front, after watching her struggle with it for a while. This finally got it around him, but with the first step towards the chair (finally!) it dropped to his knees.

Like Randy (county nurse) said about fastening a diaper when I was explaining this to her later in a conversation about health concerns, likely discharge dates so she can visit him at home and evaluate his care needs for the aids she supervises, and communication on issues between herself and his hospital doctor, "It ain't rocket science."

Oh well, we're bringing one of his own diapers from home for when he leaves. It's like elasticized pants with a central pad. It stays up. Along with whatever is left of his dignity.

Surprises 2

Thursday morning I rediscovered that a little paranoia can be a good thing. It all depends on what you are paranoid about, of course, and what you do with it.

I was switching over Daddy's Oxygen lines from the bedroom line to the living room line in preparation for moving him down the hall in the morning. After plugging the new line in, I put the cannula portion next to my ear to make sure I can hear the O2 flowing. That's the part I'm paranoid about.

Nothing. Nada. Zip. Not even a whisper.

Oh oh!

So I plug back in the old line, let Daddy know what's going on, and go wake up Richard to try to find out what's going on. I'd do it myself, but it involves lots of knee work, and he's only got one bad knee. After about ten minutes of grunting, groaning, and swearing (him, not me), the problem is located. It's not a crimp. That much I had determined myself as well as I could. It's a hole in the line, a nice angled V slice through it, pouring out the oxygen onto the floor, a place where it's not quite as well appreciated as it would be pouring out the cannula.

Some times it's nice to be a little bit of a pack rat. After he'd been on O2 for over a year, the company supplying the rental equipment mentioned that the tubing parts should be replaced monthly. Oh, gee, thanks. So we got new cannulas and new 50' tubing. We'd prefer something shorter, but 25' is the only other option, and that's too short. So, we use the 50' and push the machine up to 4 to overcome friction and make sure there's actually pressure in the line by the time it reaches his nose. But we saved the "perfectly good" piece of old tubing when we made the swap, "just in case."

Here was the case. Six months later and here was a need to swap out his tubing again. Of course, why replace perfectly good tubing just because the calendar said to? Or just because Medicare will pay for it? Holes, now, are a different thing.

We speculated that this had actually started at least the afternoon before, when Randi measured his sitting blood O2 level at 71. Nobody had thought to check the equipment. It may have even been a minor problem before that, a tiny hole that grew with rubbing and tugging. It seems that a screw at the bottom of my chair was sharp enough to have caused the tear. It was the only likely culprit near the site of the tear.

After setting Daddy up for the day, I rushed off to work. This had put me half an hour later than my usual late. Richard promised he would cover the screw with duct tape. I promised to order more tubing.

When I called in the order, they asked if we had tubing available. My guess is that had I said no, one of my coworkers would have gotten a nice run up to Shafer from the midway area of St. Paul, one of the local branches of this company. Since we had saved the old tubing, the new got shipped UPS. I figured we'd see it the middle of next week, but it arrived Friday.

Meanwhile Daddy's perking up. When his physical therapist arrived on Saturday, he was joking with her, and working harder than he had been able to. His pre-exercise O2 level was 96! After walking down the hall, he was lightly out of breath, with the O2 dropped to 84, but recovered quickly. Most mornings lately he's been so out of breath in the mornings from the (1-way) walk down that same hall that he lies like a fish gasping for water after it has been caught. Cathy commented that that was as fast as she's seen him complete that walk. She also agreed that the best thing we could have done for him was to park that wheelchair and make him walk.

She was a little surprised at the sense of humor. She hadn't seen it before, and asked if he'd used to be like this? I assured her that he had. I'd seen it just that same morning. He'd finally wakened just after six, and I decided that it was pointless to coax him back to sleep. I might as well get him up and going for the day. I mentioned to him that I had to leave for a bit at one point, because his bed was as far as I'd gotten when I got up. Much needed to be done.

He looked at himself sitting up at the edge of his bed, and commented that his bed was as far as he'd gotten when he got up this morning too.

He's back!

For now, anyway.

Surprises

Not all surprises are good ones. In fact, these days, few are. But not all are bad either.

Take my dad's foot, where he got a burn back around Thanksgiving. We were waiting and watching to see if/when it opened up, something that would need immediate and watchful treatment. Last week the outer layers sluffed off, leaving a patch of pink skin behind. Surprise! So many of his systems are shutting down, but he can still heal his foot?

A surprise to him, once I pointed it out in one of our mostly lucid conversations, is that his nerve-damaged foot has not been feeling cold for a while now. That used to be the hardest thing to try to treat, and in fact is what led to his getting the burn on the other foot (at the hospital). Since we got him those super-thick fleece sweatpants, it hasn't been cold. I had been theorizing that keeping his legs warm would result in keeping the foot warm, since he'd be supplying warmer blood to it. Surprise! It seems to have worked.

Randy got a surprise yesterday on her visit. Even with his oxygen concentrator kicked up to 4+, as it has been since Thanksgiving, his blood O2 levels can still drop precipitously. She finally got to see him when he was non-lucid. (He usually gets more alert for her visits.) Checking his levels, the blood O2 was down to 71. She'd already announced that his lungs were clear, something that - surprise in itself - should have been a good sign. Apparently there's just less working surface there, regardless of how they sound.

She gave us a surprise yesterday. She instructed us to quit adding the Thick-It to his liquids. He hates it and therefore has been drinking less. As a result, he's been getting dehydrated on occasion. Given a choice between aspirating a little liquid and dehydration, the aspiration is the lesser of the two evils. So this morning, soon as I finish posting this, he'll be getting his coffee just the way he likes it. That ought to please him. He's been complaining about it for weeks.

Echolalia

It mostly shows up on those mornings when he's managed to take out his oxygen in the middle of the night. We know his blood O2 levels drop like a rock when he's off it. Randy checks it both ways when she's here. We just don't know how much permanent damages it does him not to have it. The echolalia gives us a hint. Fortunately, it does not last. Return of the O2 stops it after a short bit. A typical conversation might go like this:

"Good morning, Daddy."

"Daddy daddy daddy."

How are You?"

"Are you? Are you? Are you?"

"Would you like a sip of water?"

"Water water water."

As he's coming out of it, he might start counting his repetitions. I tend to end my sentences to him when he's confused with the word, "Daddy," trying to help orient him to where and when he is and with whom. "Daddy, Daddy. That's two daddys. Daddy daddy." And then he'll look up at me with innocent pride and inform me, "I know my numbers."

The first time I encountered it, it rapidly became annoying. I asked him to stop it.

"Stop it. Stop it."

Sigh. Time for me to just shut up then.

Turnaround... And Around Again

I'm getting dizzy. The plan was to have a nice family X-mas party at my house, opening presents, having dinner, and letting Daddy head off to bed if he got tired. I could stay and socialize.

It started in a rather unpromising fashion. Then it went downhill.

The clear mind we expected and got briefly after wringing out the Benadryl from his system was not to last. The previous morning he got up determined that he had spent the night before tracking his deer through the woods after wounding it. That took hours to straighten out in his mind. This day was worse. He was convinced upon waking that he'd just spent 4 days in childbirth, and noted in passing his amazement that the cat had picked that same time to have 5 kittens. Amazing!

Yeah! Miraculous is more like it.

While the boys were getting the last bits of the house ready for company, I was getting Daddy ready. I had promised him a shave. Basically this involves making sure his shaver is charged, walking to the bathroom to get it, and handing it to him. No big deal. I watched him as he shaved his cheeks, chin, neck. Then he swept it up to his forehead and took off half of both his eyebrows.

Hmmm, interesting choice.

When he turned it to the back of his head, I decided enough was enough. Richard would be giving him his usual haircut with the clippers and the 1/4" guard in a few minutes, after all.

We didn't change his clothes until after lunch. Since it was soup, that was a wise choice.

He settled down pretty well by the time company started to arrive, listening to the conversations he could, and generally acting like a lucid, well-behaved adult. By supper time he asked me if I knew who those other people in the house were. I reminded him who they were, that he'd exchanged presents with them already, and that they were now doing all the last-minute food prep so we could all sit down and eat.

After eating he became convinced that we all needed to go to work, and he was our supervisor, needing to crack the whip. We're still not sure if this was a factory floor or we were his troops in WWII and he was our First Sergeant. We stalled him for a while by saying we'd have our pie first, which he joined us in. Then he decided it was now too late to work, so we all needed to go to bed so we could get some sleep before morning. He started to yell at us to turn the lights off. We humored him by turning down a few, but that wasn't enough.

Not for him, anyway. It was enough for two of our guests, who decided that the festive part of the day was over. After they left, we got Daddy put to bed with the usual meds that should have put him to sleep, but he could still be heard talking to imaginary people down in his room. This was early enough that he was able to take another dose about the time I was heading off to bed. I hoped it would help. He was lucid enough at one point that he asked me just how long this was going to go on? I told him that at this point I suspected that only God knew. He accepted that.

A wee hours potty stop showed me he was still at it. I was, apparently, learning to tune out the noises from the baby monitor in my room. I was desperately in need of sleep, and if it wasn't my name or "help" or "Nurse", it didn't register.

About 4:15 it was my name. Not from him, however. It was Paul calling for me over the monitor. When I hurried to his room, the door was blocked. The boys had managed to get in, but they'd had to push my dad out of the way to do so. He'd fallen, again, this time hitting his head. He'd landed with his head in the corner where the door was, sporting a golf-ball sized goose egg, with a dent in my wall to match it.

They managed to get him into bed, and I talked with him for a while, trying to determine if he were seriously hurt or could just be gotten back into bed. We opted for bed. Paul couldn't believe I'd not heard the loud thump over the monitor. I had a hard time with that myself. Going back to bed, I heard him mumbling away for about another hour before finally getting quiet.

In the morning, I peeked in his room. He was still quiet, laying on his back with his mouth open. Still breathing. I decided not to wake him, but let him sleep for a bit. I took my own nap in my recliner after setting up his nebulizer and fixing coffee. Around 11 he was still sleeping soundly, and while I was still letting him, gearing myself up to deal with whatever new problems he came up with, I was also beginning to worry. The goose egg was still as high as a golf ball, but now with the diameter of a softball.

It was time to call in the calvary. I called Randy. Or tried. About 1:00 she answered, and we had a great talk. She also decided to come out. She had already arranged with her bosses at the county to allow for the overtime if she was needed to help with Daddy. It was, after all, a 3-day holiday weekend.

She and Rich and I had a long chat, both before and after she examined him. I needed reassurance that it was OK to do nothing if, for example, it were a serious enough head wound that he wouldn't wake. It was OK to let nature take its course if it was in fact that time. She suspected it was, by the look of him. A blood pressure check registered low enough that it indicated he was not in pain, whether or not he could tell us. It woke him up, and we chatted with him a bit. Randy asked him if he knew what was going on?

"I'm dying."

Five minutes of concentrated attention and he was ready for sleep again. He did indicate that he had been trying to call to me those times earlier when I'd peeked in to check on him. There'd been no motion or any other sign of anything but sleep, but Randy reminded me that hearing is the last thing to go, and from now on when I entered his room I should talk to him, reassure him I was there. I or someone should stop in hourly, change his position, offer a sip of water or dab some into his mouth from a straw. If we awakened him and kept him "busy" for five minutes, it would exhaust him so he'd go back to sleep and stay out of trouble. Meaning no more wandering.

He was no longer feeling hot or cold, but still a bit itchy, so we removed his longjohns he used for pajamas, as well as his pressure socks so we could keep an eye on his legs. One sign of imminent death is blotchy legs, creeping up from ankle toward knees. When it hits the knees, you've got about 2 hours left. We also added another sheet - a flat one - under him so he could be moved back into position easily, and removed excess blankets. Sips of water were to be offered for his chronic dry mouth, and his face and other spots sponged off periodically to remove sweat salt. We weren't to be surprised if he didn't want to drink, or eat - wait for him to ask for food - and we didn't need to shovel his huge supply of pills into him. We could still do his nebulizer treatment even if he slept, simply by holding it in front of his open mouth. It would ease his breathing anyway, as he would pull enough of it in that way.

He slept that way all day, as well as all night. Monday I left for work with Rich taking his hourly visits to tend him. His goose egg had gone back down from softball diameter to golf ball size. He of course had no memory of the fall. I cancelled his Meals on Wheels, had a long chat with my brother to prepare his family for what was happening. They were out of state, visiting my married niece in Oregon. By no means should they cut their trip short, I told them.

By the time his aid came in that afternoon, he was wanting to get up and go sit in his chair in the living room "for the last time." A few hours was all he managed, and by 5 he was ready for sleep again. He commented to Rich that he hadn't seen me for weeks and wondered where I was. We chatted once I got home, and he said he knew I'd been taking good care of him but his memory was screwing around with him. I mentioned his fall, and he expressed surprise. I took his hand and laid it over the bump. Now he was impressed. Perhaps the biggest mercy was that the whole time since he'd been awakened Sunday afternoon, he was lucid, aware of where he was and who was - and wasn't - around him. I had no thoughts left on how to keep him in bed if he decided to go wandering again in the night.

This morning when I woke him, he wanted to get up and go sit in his chair immediately. I asked him to wait while I tended to a few things, like switching over his oxygen and giving him his nebulizer right there at his bed. I'd need to get Richard, as Daddy needed more help than I could give him to stand and walk safely to his chair.

Once in his chair, it was much like any ordinary day. He had coffee, a bit of breakfast, juice and pills, and we watched news and weather together. I asked him not to try to get up and go anywhere today without Richard there to help, mentioning the three falls which he'd forgotten he'd taken. To illustrate, I suggested he feel his head, and mirrored where. His comment was, "It was much bigger yesterday."

Perhaps the hand remembers what the brain doesn't.

It turned into a full day in his chair, and he was hungry again well before lunch time. Richard reported him as mostly "present", as in lucid. He did say something about dying soon to his aid, upsetting her. He seems so much better, and yet he's more ready than ever psychologically to go. Randy stopped by, likely unable to believe my reports of his recovery left on her voicemail. I don't know how long it'll last, or how long he'll be lucid this time. Whatever it is, we'll celebrate this day. And maybe nickname him "The Comeback Kid."

And just one more thing to take care of.

Ring. Ring. Ring.

"Hello, this is ... Meals on Wheels.... Leave a message..."

Hi, this is... calling on behalf of.... You guys must think I'm schizophrenic, calling to resume, then cancel, then resume, then cancel. Anyway, he's just had a wonderful recovery, so could you please resume his meals tomorrow again please? ..."