Updates, because I suck

Amanda did the whole hospital in-out-in-out thing over the last two weeks. Out from chemo #3, in for a neutropenic fever, and back out on Saturday. She's been better at keeping her blog up to date, but it was a big ol' mess. Seems that every time she goes in with a neutropenic fever, she winds up having some serious plumbing issue. Eeeewwwww.....

I got the MINI (mostly) repaired. I took it to Crown after about a week of staring at it in the driveway, and $1600 later had a new clutch. I took the opportunity to buy all the parts necessary to return it to perfect running condition, and now I just need to have some of that evanescent "free time" that I keep hearing about.

Which isn't entirely true because I managed to find several hours yesterday to wash, clay-bar, and wax the Miata. I dread actually applying the stickers, but that's going to happen some time this week, probably after I get the trailer inspected tomorrow.

My shingles are pretty much gone. I took my Valtrex for a week like a good boy, and now I just have some residual pinkness on my neck.

Work is terribly boring.

Alastair is starting to show signs of strain from the whole mommy-go-round, but he's a tough little nut, and last night he performed for ~200 people (most of whom weren't watching, but he was on stage and dancing like a madman).

I think that's about it. Rock.

Manda's Sick - This just in!

8 preliminary matches! Now they have to be contacted, confirmed as willing to donate, and brought in for further testing.

Amanda apparently also has a rare antigen that will probably preclude a 100% match, but we're told that a 95% match is likely and good enough.

Another day, another problem

Monday afternoon, after getting the good news that I have shingles, my beloved MINI told me that we are no longer friends.

When idling in gear (clutch depressed), I can feel gear gnash. Shifting is very difficult. The car whines and groans. Boo.

We drove the car like that to Amanda's parents' house, and it was so bad by the time we got there that her mother suggested we borrow her car. I had to go back later with the truck and retrieve the car (thank God for my new winch!).

I put the issue out to the Internet last night, and the only suggestion I've gotten so far is that it's probably the throw out bearing. Frankly, that's better news than I'd expected, since the '02 - '04 Coopers use a piece-o-crap transmission made by Midlands. MINI switched over to Getrag in '05, but will not allow service departments to retro-fit the new unit to the old cars. I'm on my 2nd Midlands unit right now.

So the fix for the throw out bearing is to pull the entire front end off the car, pull the tranny, and spend the better part of a weekend nervous about forgetting something crucial. While I'm down there, I might as well replace the clutch.

But then there are some other problems with the car:

1. The driver-side sun visor is broken ($50?)
2. The left rear wheel-hub needs to be replaced ($230)
3. The windshield is cracked in 2 different places ($500?)
4. The front valence is cracked from an impact a couple of years ago ($400)
5. The steering rack is popping and grinding ($???)
6. The steering wheel is pretty badly worn ($350)

Now, I could luck out and find someone with a used front valence, or maybe the front from a red Aero Kit. I could also find a stock steering wheel from someone who's swapped to a racing wheel. But I'm figuring the total cost to keep my car running (and return it to near-new condition) is right around $2000. Yuck.

I must be getting a new roof!

Last year I had scabies. Awesome!

3 weeks ago I had what looked like a recurrence on my left arm. I treated it, and the bumps went away.

Last week I got a hot rash on my neck, and a swollen lymph node right above it. So I just dealt with the hot rockin' awesomeness of having an exposed rash on my neck for a week. I lanced a few of the blisters that showed up, and once tried applying the scabies medicine to the area, thinking maybe it had transferred through my pillow from my arm to my neck.

Yeah, no good. At some point the open blisters started to scab over and spread a little, and people started commenting on how beautiful the affected area is. Kind of looks like a vampire bite.

Then yesterday I started to notice itching around my upper back and chest, and matching little red bumps. Time to see the doctor.

I was #6 at Patient First this morning, and a very nice pregnant doctor recoiled slightly when I showed it to her. Perhaps she just didn't want any of my flesh-eating bacteria. Wuss.

So she lanced a few blisters herself, took a swab sample or two, and told me she thinks I have...wait for it...shingles! And do you know what shingles is? I didn't: it's herpes!* Hot snot: my wife is waiting for a bone-marrow transplant, and I develop a highly contagious skin condition.

So now I'm taking Valtrex. It's the single biggest pill I've ever seen, and I get to take 21 of them.

Thank God Amanda's not neutropenic right now.

My favorite part of the whole doctor-thing this morning was that after she took a few swabs, I started feeling seriously nauseated. I was trying to listen to her and hoping she'd be done soon so that I could get outside for some fresh air. I quickly realized that wasn't going to happen, and apparently she realized the same, and they made me lie down on the bed, put a stool under my legs, and placed a cold washcloth on my forehead.

I think having seen the needle and knowing that someone else was poking my skin did it to me, but I was sure I was going to retch.

Here's a shot of the sexy needle (the one on the right). Just looking at the picture makes me feel queasy:



*Ok, so it is herpes, but more specifically it's a recurrence of Chicken Pox. Read about it here (with charming similar-to-mine neck-shot goodness).

Manda's Sick - The Future

Yesterday we had THE BIG MEETING with the staff of VCU Health System North 10: the bone-marrow transplant team. They were late, and by late I mean more than an hour late, but the information they gave us was invaluable. I'll try my best to recite it here, in some vague semblance of logical order.

Yesterday they drew her blood to begin allelic matching. This is a matching process that uses 10 markers instead of the usual 6. As there are approximately 7 million people on the bone-marrow registry, and she's caucasian, there's an 82 - 85% chance of finding a matching donor. That donor must be contacted to ensure that he/she is still interested and available. One complication here is that a significant portion of the registry is currently serving in either Afghanistan or Iraq.

We discussed having a bone-marrow drive, but there's really no point, at least not explicitly for Amanda. Anybody who gets tested now wouldn't be on the list for about 2 - 3 months, and we're expecting that she'll be preliminarily matched within 10 - 14 days (that's just with the results of her blood-test and a basic screening of a computer database). She should have a definite match by 6 - 8 weeks--but maybe as many as 11 weeks.

We still encourage as many people as are willing to sign up. There is a cost, but the payoff is potentially enormous.

In the meantime, Amanda will continue to receive chemo-therapy treatments. The transplant team wants to minimize the number of successive treatments since she's in remission, but her particular flavor of leukemia (monosomy 7) is both aggressive and intelligent. Too little chemo and it returns, taking her off the transplant list. Too much chemo would actually enable the leukemia to learn about the medicine and take steps to defend itself (WTF???!!!). The particular method will be FLAG, most likely, as it's a medium-dose Ara-C, and hers has proven tougher than what a low-dose Ara-C can handle. They don't want to go high-dose as that would destroy her GI track, and they need her to be eating healthily.

Then, right before the transplant, she'll go in for 6 doses of full-body radiation, followed by 2 days of chemo. Then she'll receive the transplant (interestingly, she'll probably be participating in a clinical trial to determine which is more effective for her particular flavor of AML: stem-cell or actual marrow), and begin a 4 - 6 week process of intensive monitoring and anti-rejection medication.

When she comes home, she'll be taking literally dozens of pills daily, enough that prior patients have joked about just pouring some milk over them and eating it like cereal.

From what I recall, the first 100 days after the transplant will be the most important time. She has been explicitly instructed to be a weepy whiny complaining hypochondriac. Important subtle clues into potential issues like Host-vs-Graft disease can include loss of appetite, so I'm supposed to snitch on her if she doesn't eat well.

All of this continues for 6 - 9 months, minimum, and will also involve an utter lack of house chores. She is not to cook, vacuum, dust, otherwise clean, do yard-work, go to the grocery store or drugstore (she can use the drive-up window). But the bad news is that she can't really play with the kitties. All the furniture will have to be covered, so that the cats can lay where they want, and then uncovered for us to use, and then re-covered when we're done. If she pets either cat, she'll have to immediately wash her hands, and if she wants to lay with one of them, there will have to have a sheet between them.

Amanda will require a care-giver for at least a year, if not slightly longer, and if she has any neutropenic fevers or other issues, she is to call the clinic (open 24/7!) and get to the hospital within 15 - 30 minutes. Everybody who comes into common contact with her will have to have a flu SHOT this year (no nasal sprays), and she cannot be around anybody with an infection.

But looking beyond that, things get much better. She should slowly be able to re-integrate herself with society. One curious thing she'll have to do is get re-immunized for all her baby shots. She'll then be able to start going to the movies, eating out, and all that normal stuff other folks do.

Then the only things we really need to worry about are long-term secondary sickness markers.

We asked about survival odds, and the doctor told us that they should have a mortality rate of 20 - 25%, but that North 10 generally has a 12% mortality rate.

If you're curious about what the transplant is actually expected to do, the doctor described it thus: "Do you have a best friend? Do you and your best friend generally see eye-to-eye on most things? If you swapped houses with your best friend, would she redecorate? Because that's what we want." They're taking a portion of someone else's immune system, using it to replace her own, and then asking that immune system to leave things pretty well as they are, but to take care of things that just don't fit, like leukemia. They are encouraging this new immune system to take issue with the leukemia and get rid of it, but not expand the operation into any serious renovations. Thus they're looking for a matching donor of roughly the same age, with roughly the same historical exposure to disease.

So there it is, in a nutshell. I'm not really worried for Amanda--she's rough-tough. I'm worried about whether or not I can perform to the level required. I'm worried for Alastair, and how we'll deal with child-care (we can't do daycare, as that would bring too many potential germs into the house).

Crazy Neighbor

We've lived in our house a little over 5 years, now, and today was the very first time I've ever spoken more than a single sentence with one particular neighbor. The conversation was not pleasant.

The joy began while Amanda was on the phone with my stepmother, Randy. Amanda was looking out the window, watching this guy (hereinafter "4TCREWS", after his license plate) ride his lawnmower around his scorched yard. Now, it's worth pointing out that this guy mows about 6 times a year, generally waiting for the grass to get waist high before the first cut, and then cutting it right down to the dirt to prevent any chance of the yard surviving. He also likes to cut about 8' into our property.

So the guy's mowing, and Amanda's chatting away. Then I hear her exclaim that 4TCREWS has just tossed a beer bottle under one of our bushes. She's getting worked up about it when she sees him pick up more trash from his yard and deposit it similarly.

I needed to go out front and bring in the recycling bins, so I went out, chucked the bottle back into his yard (it landed right beside his driveway!), retrieved the bins, and came back to see him darting a very nasty glance at me. I stepped inside and resumed my good time playing with Monkey-Boy, figuring the guy might realize that we didn't want his trash.

Oh, no. Lazy sack o' shite rides his mower over to (what he perceives to be) the property line, and strolls up to my front door. I let him ring the doorbell 4 or 5 times before casually sauntering up to the door with my child and a nice hot cup of tea. When I opened the door, he was fuming and asked me if I was trying to make some kind of statement.

I told him that my wife had witnessed him throwing trash into our yard, and that we didn't appreciate it, all while calmly sipping on my tea and smiling at Alastair. He replied strangely that it wasn't his trash: he doesn't even drink beer! Oh, well, that makes it all better...

So he prattles on for a while about how he doesn't want to hit the bottle with his mower, that he was going to come back and get it, along with all the other trash he'd deposited, and that he didn't appreciate me throwing it back. He went into the trials and tribulations of having neighborhood hooligans target his yard for their trash (hey, they get everybody).

I just let him rant for a bit, and told him that if it was truly his intention to retrieve the trash, then in that case (and I carefully implied that ONLY in that case) I would apologize, but that our yard was not an appropriate receptacle, even temporarily.

Now, I'm not a calm person under fire. I get all trembly, but I did my very best to keep that cup of tea from revealing my nerves. I think I pulled it off, as he just sort of muttered and wandered off.

I've spoken with other neighbors about this guy before, and they've all told me that he's an ass. We've had summers when he waited long enough to mow the grass that we got ticks. We've had to endure his curious arc-sodium lamp on the back of his house, we've had to endure his constant warfare against our grass, and inherited his leaves every Autumn. I'm inclined to agree with my other neighbors, and now I can kvetch with the grumpy old man across the street, who positively foams at the mouth whenever 4TCREWS comes up in conversation.

With apologies to Sesame Street:
O an asshole is a person in your neighborhood,
In your neighborhood, in your neighborhood,
O an asshole is a person in your neighborhood,
A person that you meet each day.