Barely promoted

Telegraphic update

Annajane is back in the psych hospital. She's physically stable, moderately confused, and hypomanic. They're slowly working her lithium back up and trying to decide what to do about antipsychotics. It's not clear, and probably never will be, whether she had neuroleptic malignant syndrome, but they'll be as careful about the meds as if she did.

Nanna is getting better slowly. We called an ambulette service to take her to her doctor's appointment last week, when her back pain was still very bad. She probably has an osteoporotic compression fracture. (Well, a new one. She's already kyphotic.) Her doctor yelled at her for non-compliance (she's refused to take medication for either her palpitations or her osteoporosis) and referred her to a cardiologist and an orthopedist. Both those appointments are this week. I'll take her to those, then go back home.

We have an appointment with Cornell on August 12. I can't tell whether anyone read our letter. My cycles are poorly timed, so I'll have to make a separate trip (or stay a long time) to have them do the day 3 bloodwork. Which I want to have them do, actually. Heck, give me another HSG, too! Still, it's frustrating that we may end up waiting another 2 months and spending a thousand (or two) dollars just to be told that they won't work with us unless Beaker has another operation, which he won't.

I'm getting really sick of my uncle. Also, driving in dense suburban Weatherwood. And the Vuitton-swinging pregnant ladies at the Starbucks (sadly, the only WiFi hotspot I can find, and I have to pay). I miss Beaker. I want to go home, and home just isn't here any more.

Jane Austen has been saving my soul. But I haven't been getting any work done at all.

Tottering to the bathroom, part two

Nanna's still in bed. Her back started to hurt badly a couple of weeks ago. It sounds to me like it's muscular—only hurts when she's trying to move in certain ways, hasn't gotten any worse, is perhaps getting bettter very slowly. She's very, very thin, though. She had a few days of throwing up, but seems to be over that.

Ricky and Marina have been taking care of her. Primarily Marina, who's between paying gigs^*. Nanna is refusing any food with protein. I think she's mostly been eating Eggos, canned soup, crackers, and ice cream.

I've been trying to sit with her as much as I can. It's very difficult watching her pull herself up out of bed on her way to the bathroom. But she snaps at me when I try to help: "I have to be independent." (I think she's afraid she'll have to go in the night, when the rest of us are asleep.)

I want to go buy a bunch of things for the apartment: an air conditioner for her room. A cordless phone to set by her bed, one with big buttons and adjustable volume. A bright light so that she'll be able to read in bed. But the need for all of those arises from her being stuck, well, in bed.

Nanna's been insomniac for years. I know she plays memory games with herself—she remembers far more of the mysteries we've both read than I do, because she goes over them in her head regularly, with particular attention to the final perpetrator. Today she told me about a whole 'nother category: alphabetical lists. For each letter, find an: old-time actress. Modern actor. Broadway play. "When I started listing presidents, there were nine letters that I couldn't get. D, although of course there could have been Dole. Or Dewey. S, and..." She's also keeping a rosary tucked in with her, and said a full cycle as I read next to her last night.

I can't imagine how we're going to get her into a car for her doctor's appointment in a few days. But we must, and we will.

^*Annajane said that they haven't beeen able to get a green card for her after all. I'm deathly curious, but it's kind of hard to ask.

Tottering to the bathroom, part one

By the time I got the to hospital, Annajane was much, much better. She was back to an ordinary ward and, despite being off all psychoactive medication, more lucid then she's been all year. She's still very weak physically, though, and suffering from the depradations of the ICU itself. Her elbows and knees are scabbed up (from when she was "falling down lots" at Daisyfield?), her arms are bruised from blood-draws, and she still has an IV set in her left arm and electrodes glued to her chest.

She was surprised to see me (there had been no way to get her a message). Sounds like she was very scared in the ICU (who wouldn't be?). She doesn't remember a lot of things, like the spinal tap (lucky her!). She doesn't like the food. She's trying to ignore the aides who sit with her. And she's very annoyed that they won't let her walk to the bathroom by herself.

While I was there, a chipper physical therapist came in to see how well she was walking. Not very steadily, as it turned out. They're going to keep the aide in her room and continue to require Annajane to ask for help whenever she gets out of bed.

Right now she's been in bed for several days, so it's not surprising she's wobbling. They seem to expect that, with gradual practice and greater physical recovery, she'll be fine. But, there have been so many times over the last five years that the question of neurological problems has come up. Usually it's just swept under the neuroleptic-side-effect rug. But today, when she wasn't on drugs, I couldn't help but notice the language problems: word substitutions, especially, just weird ones. She was still holding her hands in front of her as she tried to walk, too, although at least they weren't shaking.

Overdetermined hypochondria

EVENT: the morning I was going to drive to Weatherwood, I woke at dawn, soaked in sweat. My stomach and bowels were both unhappy. I kicked off a blanket, tossed and turned for 20 minutes, and went back to sleep.

HYPOTHESIS ONE: A perimenopausal estrogen-deficient night sweat. Particularly scary because it's mid-follicular. Will this be a cycle where I don't ovulate?

Scare factor: 10. I wish I'd never heard of premature ovarian failure. Right now day 3 bloodwork (never previously done) is my next chance to be told, "no, never, nammy-nammy-poo-poo," and I won't be able to get it done until late July, probably, due to previously planned travel. I am obsessed. I am terrified. I am powerless.

HYPOTHESIS TWO: Usually people talk about SAD (seasonal afffective disorder) as a depression-in-winter thing. But, I've had insomnia during the summer for as long as I can remember. Is this a symptom of a shadow syndrome of something truly awful?—and do recall my mother's major mood disorder...

Scare factor: 9, but it's only not 10 because it's an old worry.

HYPOTHESIS THREE: My ongoing anger with the pharmaceutical industry over their continued emphasis on big-ticket lifestyle drugs (instead of, say, anything that could actually help any member of my family live longer or more happily) has exhausted my digestive resilience. Bring on the purple pills before my esophagus is perforated!

Scare factor: 2. It's just that I never ever used to get indigestion.

HYPOTHESIS FOUR: Let's look at a bit more context. The last several weeks, which were supposed to be the peaceful start of my sabbatical, have actually been a stress-fest. Beaker's been working so hard we scarcely see each other. My mother and grandmother are both sick. And we've been trying to make the reproductive options decisions, and we've had houseguests most of the time.

Perhaps I was scared about my mother being in the ICU with a drug reaction that can be fatal?

Or, a bit worried about the impending trip, well beyond my ordinary driving capabilities? ("Are you going to do it in one day? That's really hard," said Beaker.)

Perhaps the wonderful but unusual food prepared by our last houseguest, on whom I have such a friend-crush that it's almost painful to talk to her^*, didn't entirely agree with me?

Perhaps the three blankets I'd put on the bed, more than I use during the worst of winter (the heatwave broke, and I felt cold when I went to bed), were just a bit too much?

Scare factor: 1. But it's no fun to simply be human.

EVENT: by the time I arrived in Weatherwood, I felt like someone had slipped an especially fast-dividing strain of Heliobacter pylori into my breakfast smoothie, then taken me out back and applied Justice-Department-sanctioned interrogation techniques all day. I curled up in an overheated room and whimpered as my stomach churned and my sore muscles twitched. Then slept all night, uninterrupted, and woke up feeling human.

^*The term "crush" is so appropriate here. I'm clumsy around her like a teenager in love: forgetting to turn on the car's headlights, trying to pour laundry detergent into the dishwasher, etc.

Communications breakdowns

ITEM ONE When faxing important doctors at important clinics, it is necessary to watch for subtle signals the fax machine may be sending about its needs.

Although it is tempting to assume that a modern multipurpose print center will "swing both ways," paper orientation can be a sensitive issue.

ITEM TWO Despite seeking advice from several sources on how to pick a doctor at Cornell, I ended up going with the first one whose assistant was nice to me. And who's still nice to me, despite all the blank pages pouring out of her fax machine.

I still like her, too, even though her phone system hangs up on me once I've been on hold for two minutes. Even though the response to my faxes was staticky voice-mail that might say, "We'd be delighted to see you," followed by a phone number. Or, perhaps, "The doctor's laughing too hard at your account of your husband's surgery for me to be completely sure of his response, but you probably shouldn't bother calling us again."

ITEM THREE Fortunately, I like the doctor's answering service even better than I like his assistant. See, they start picking up at 3:30 on Friday afternoons. "Oh, I'm so sorry, honey. Do you want to leave a message?"

ITEM FOUR Since when do all doctors have assistants? Annajane's in the ICU now. They don't have any idea whether she has an infection or a bad drug reaction. (She's got a lot of the predisposing factors for NMS, actually. Thank something her fever has started to go down—it was 106 when she was admitted.) The ICU doctor's assistant was the one who called me back. What? First-degree relatives need to be pre-screened? C'mon!

When I did talk to the doctor directly, he was unwilling to use big words. After I forced him to, the scare quotes were clearly audible. He doesn't sound like someone with a lot of sympathy for headcases—he didn't think there would be much point in visiting for the next few days, for instance, since she's too agitated to talk sensibly with anyone.

ITEM FIVE It took 6 tries to get Nanna's doctor's office line not busy. Once I got through, I was able to sweet-talk the receptionist into giving her an appointment on Thursday. "If she's so sick, why didn't your uncle tell us that?" (Ricky had only been able to get an appointment in late July.) "He's not very pushy." "Yeah, well, ya gotta be a little pushy!"

ITEM SIX There's no cordless phone in Nanna's apartment. Now she's stuck in bed, there's no way for me to talk with her directly.

ITEM SEVEN I'm ignoring e-mail from collaborators.

Items four, five and six all argue strongly for my driving to Weatherwood next week, of course. Items one, two and three are neutral: I only ever give doctors my cellphone number. Item seven argues against, but it's going to lose.

The second appointment with the third doctor

The second appointment with Dr. Shrinkhead was less revelatory. Beaker and I ended up yelling at each other in the car on the way there. But, by the time we arrived, we had basically figured out what we want to do next, aside from a few baroquely hypothetical quandries—hence, the yelling.

The verdict is: find out whether Cornell will work with us. If so, try one cycle. If not, agonize about whether to cycle with Dr. Brash, but probably do it. Either way, agonize about how many months our own fecklessness has cost us.

And, in the exceeedingly likely event that no baby has resulted, crank up the donor IUIs.

Dr. Shrinkhead will send a note to Dr. Brash outlining that little decision tree. He is a nice man; he asked us to let him know "what happens." And he was quite comforting about the parent side of the donor equation. Quite silent about the child side, though.

I came home frrom the appointment to find getupgrrl's lovely lit review on donor outcomes (thank you!). Our clinic is doing a decent job, actually. I don't feel pathologized by the counseling requirement; we ended up thinking harder about what we were doing than we might have on our own. Neither of us was quite ready to give up on IVF, and that was brought out and will be acted on.

I do question the the counseling being required, but only in the way that I'd question, e.g., required trauma counseling after a school shooting. People heading off to donor-assisted reproduction are in a stressful situation, and may well not perceive many of the issues that they'll have to face. But the requirement carries with it some assumptions of homogeneity of response to the stress, and homogeneity of what appropriate assistance would be. Dr. Shrinkhead was much more on autopilot today; there were things that had to be said, which was a little weird.

His concrete advice matched the, uh, results so far as analyzed by 'grrl: yes, disclosure is better (not that we'd considered anything else—the irreversible absence of my father is one of the few things my family handled well), but neutral on openess of identity. That's where Dr. Brash has been all along, too, just in his own brash way.

A fourth hospital

Annajane made it less than a week at Daisyfield, her new adult home. Yesterday morning they called an ambulance for her; she was admitted to a medical unit at yet another hospital (number four for the year), presumably the one closest to Daisyfield. The adult home director told me she'd been "falling down a whole lot."

She has a urinary tract infection. She had a high fever when they picked her up, and she's on IV antibiotics now. They'll discharge her when her temperature is normal again; they expect that will be in a day or so. Athough she's on a medical unit, she's been quite "agitated," especially when a doctor's around.

I'm trying to decide whether to go to Weatherwood. There are no especially cheap airfares right now, and it's a long drive through a lot of thunderstorms.

In the meantime, I sent flowers. Of course my buttons got pushed in the process: you try explaining to the nice florist lady that yes, she's your mother, but you never use the words "Mom" or "love."

Additional testing required

I spent much of yesterday reading the boards over at IVF Connections. Everyone who posts about Dr. Brash loves him. He's probably gotten every other woman in Ohindinois pregnant. Also, everyone else with a spouse with CF has already gotten pregnant. They come post on the CBAVD board to tell the posters (most of whom have just been gotten a surprise diagnosis) that everything will be all right.

Have I mentioned that we have long-term houseguests? I love them dearly, but it's been rather difficult to have the deep conversations we should be having about our reproductive future. We also have a deadline: the second appointment with Dr. Shrinkhead is Wednesday.

Yesterday was Beaker's birthday. (No, I didn't get him anything.) The guests suggested that Beaker and I go out for a private dinner. Beaker pooh-poohed this, suggesting we all go out together. SNARL. While he was changing into a decent shirt, I cornered him and whined. His response: "I need to take get the car inspected tomorrow. Why don't you come along?" It's a good twenty miles each way. I took what I could get.

So this morning, as the rusty old box his parents gave us many years ago putt-putted south, I told him about what I'd been reading. Cornell sounds great: intense monitoring, greater adjustment of medication during the cycle, the fanatical lab, plus co-culture. Not to mention the size of the program. Feed me into the assembly line! My only fear is that they won't be willing to use the sperm we have on ice.

At the inspection site, after Beaker handed over the keys to our rustbaby, we sat out at the edge of the parking lot facing a swamp. He does want to do a third cycle. He's still uncertain whether we should change clinics. He's never left a doctor he didn't get along with, but knows from (lots of) experience that that can be a lousy strategy.

But he's very clear on not being willing to get another biopsy, and he's right. Too damn much risk to his health, which is more fragile than it was a year and a half ago. I teared up, even so. The waves of hope and despair run so close together.

The ladies at the inspection station shouted out for us. The poor old car had failed. Fortunately, they run a shared-risk program: you're not charged until your car passes.

A quarter step forwards, an eighth of a step back

This morning, after finding two baby annnouncements in my e-mail—one of which involved twins born to a woman several years older than I am—I finally read the Cornell web site. I was shaking by the time I went to pick up the phone. It's wonderful they care so much about their male factor program! But, will they insist on cutting open Beaker's balls again?

Only to find out: I have to pick a doctor before anything else can happen, even over the phone. So I need to read more of their web site. And I may go off to the bulletin boards, which have about the same soul-sucking effect on me as dementors do on Harry. Waaaaah.

Malignant neglect

Annajane was discharged to Daisyfield, the new adult home, on Thursday. I spoke to her on Wednesday night. She seemed tense, but basically optimistic. I promised to call her Thursday evening, her first night at the new home, but forgot. Friday evening I did call, but no one picked up the phone. Is there some separate line for residents that I don't know about? Hmmm.

Saturday I forgot to call, and we had a houseguest show up. Sunday morning our guest went to church and I tried again. "You want... Annabel? Anna Jen?" "No, Annajane." "Oh, the new girl! Annajane Maple, PICK UP THE PHONE! PICK UP THE PHONE!"

My mother sounded miserable. At her last adult home, she'd go to visit Nanna every Sunday afternoon; Ricky came and picked her up in his cab. Ricky was coming up this afternoon to drop off all her stuff—the boxes Tom her case manager had collected from the second nursing home—but Ricky wasn't going to take her back to Weatherwood. Nanna was too sick, he said. She couldn't even get out of bed.

I saw red. Nanna's back went out this week. She told me a couple of days ago that she can't even get in and out of a car to go see a doctor. So Ricky is saying her daughter shouldn't visit? Her only-very-recently-even-sort-of-healthy daughter, just out of the hospital? What the hell?

But then Ricky arrived. I asked Annajane to put him on the phone.

Poor Ricky. He's stuck at home with Nanna, who's bitter about her back, angry and scared that her new lease hasn't shown up (she's convinced her landlord hates her and all her ragged children and wants them out of the building; I suspect her landlord only hates how low her rent is, and that that affects e.g. promptness of repairs), and who wasn't expecting Annajane to visit. He anticipated that, if he brought Annajane back to the apartment unannounced, he'd never hear the end of it. And, since Nanna is stuck in bed, there was no way to call and warn her of the change in plans.

I was torn. Nanna can be a real bitch, she hates surprises, and she really knows how to push Ricky's buttons. He's intellectually and emotionally defenseless against her, so he just starts yelling, which scares Nanna. No doubt she would give him hell all next week, and he'd give it right back, and I don't want to gratuitously make both of them miserable. Yet, at the same time, I really think Annajane and Nanna should see each other this week—start the routine off again.

And, of course, Ricky had his own plans: he had to take Marina to the train station (she's working this week, live-in, so she won't be around). "Plus it's three times^* as far to this new place, Emmy, you know? I really wasn't planning... it's a bad day for me, just this one Sunday, to have to make the two trips." He's trying to buy himself some peace. God, why didn't I call earlier this week when I could have headed this mess off?

I gave up. Thanked Ricky for bringing up the boxes and asked him to hand the phone back to Annajane. Explained to her that she wasn't going home this afternoon.

I feel like hell. I can't tell whether the new home is awful or not. The attitude of whoever answered the phone wasn't great, and apparently the staff sometimes just don't pick up the phone. Annajane is unhappy, but my not calling for a few days and her not getting to see Nanna are coloring everything. It's got to be so hard, to suddenly find yourself in a new group of broken, cast-off people. "I was expecting this place to be different from the last one. But no one does anything except sit around and watch television."

She seems very sane right now, overall. She deserves to see her family. But Nanna and Ricky are both just too screwed up right now.

Meanwhile, Tom will be taking her to the Social Security office tomorrow to get her benefit status changed to what it should be, now she's outpatient. He's asked me to try to find any identification she might have. Of course, everything's gone. Like it always is.

^*Actually, according to Mapquest, the distance is 1.9 times larger; estimated time, 2.4 times longer. It's still much less time, and much much less distance, than it takes me to get to a decent supermarket, out here in Ohindinois... although, I concede, the suburban driving is a lot more annoying.