On our way

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I’m sitting at the airport bar listening to “I’m glad you came” and having a glass of lovely Sauvignon blanc. We had a bit of confusion on arrival since our departing flight was on a different airline in a different terminal that charges for checked bags (boo!). All sorted now. Our flight boards in half an hour, and we’ll be home around 10pm.

We stepped out for a bit yesterday and had lunch at a Santa fe style restaurant. Then we caught the bus to a movie theater and watched The Avengers (again). Just as good the second time. I had a coke at the movie (which I almost never do), and I had to go to the bathroom, but I had to hold it for about 40 minutes waiting for screen time that didn’t include Captain America or Bruce Banner. #sacrifices

We were pretty tired after all that, Merlin especially. She’s been doing great, but having some headaches, bruising, fatigue, and numbness. We don’t think the topomax is really doing anything for her (either because what she’s experiencing isn’t a seizure or the dose is too low.) We see the pediatric neurologist on Monday. It should be the last dr appointment until we come back to SF in August for round two.

We spent $800 on airfare, $1800 on the apartment, and right at $2000 on our ten days in San Francisco. We paid copays for the doctor visits, and I guess we’ll get billed for procedures after they are run through insurance. I paid all of our bills this month except the $310 student loan, and we will skid into town with about $50. I left the car with a full tank of gas, so I think we’ll be alright. Payday is only ten days away and should be normal for May.

Each payday has about $2200 left after we pay all the scheduled bills. We usually spend all of that on food, gas, and stuff. It’s really easy to do. Sometimes I go renegade, though, and pay off a bunch of things and try to make us live off of something ridiculous, like $400. I’m really tempted to do that. I’m also thinking that we should be stashing away ALL THE CASH against William’s employment-seeking period in August/September. I’ve made multiple post-it lists to try to resolve my contradictory impulses. I also have a short list of things I would very much like to take care of sooner rather than later. I guess we’ll see where I am mentally on payday.

In any case, I’ve spent a lovely 20 minutes typing with my thumbs and drinking my ($9!) glass of wine and looking forward to being Home.

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Relieved

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This is really just the beginning of our AVM journey, but honestly, I feel like we’ve pretty much won.

The doctors have been carefully reminding us at every turn that the risks are small but there and that this is a long haul and that we are going to keep moving forward and acting conservatively and that this treatment probably will not solve everything.

Yes. All of that.

I’m still just ridiculously relieved to have survived the first procedure, to have made it to all the appointments, to not have had a disastrous last minute fever or cough that canceled everything.

We’ve weathered 152 minutes of lasers burning tiny beads along damaged veinous pathways, and we’ll weather two more visits and figure out all the money afterward.

I’ll admit that now that the adrenaline of fear has worn off, I’m registering the slow, low thud of difficulty that seems to underpin our daily lives. Health, finances, school performance, job prospects, it’s all there waiting for us. I’ve already started making my post-it lists. And I’m practicing my deep breathing. One breath after another. That’s the way it goes forward.

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Mother’s Day

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Mother’s Day is weird. I don’t usually celebrate or mark it in any way, and this year was no exception, really, but I did buy flowers because my mother-in-law was going to be with us, and it was Williams’s birthday, but he didn’t want a cake, and Merlin was going to have radiosurgery, and, also, I just like to have flowers.

Being a mother is the very weirdest thing I’ve ever done. I still don’t get it, quite. I feel like every day I’m just making this up, and every day is just an attempt to do no permanent damage. Undoubtedly, the damage is achieved by this mentality, the melodramatic suspicion that I have RUINED EVERYTHING that I am constantly having to waste time shaking off. How does someone so critically divided teach a young person how to keep it together in a world that seems mostly designed to pull you apart if you aren’t paying attention? Heck if I know.

My parenting style is a mix of terrible sincerity and light sarcasm. All parenting guides and teacher handbooks warn against it. It doesn’t always go over well. I actually had to tell Gavin at the beginning of the school year that I was not responsible for his happiness. It was a difficult conversation (I feel responsible, but I know that I can’t be if he wants to ever have any agency.) I outrage Merlin on a weekly basis. Then I have to put on a Mighty Boosh character voice and say “it’s an outrage!” and wait for her to a) recognize my genius at diffusing a difficult situation b) realize what a dork I am – obviously beneath her scorn or c) be further outraged. The chances are pretty evenly distributed.

I’ve been a mom for longer than I’ve been anything else, and I think even when my kids go off to do their own things, I’ll probably still be a mom. I’m sort of looking forward to the day that they will do that. I tell them that when they turn 18, we will shake hands and part as friends. My friend Jessica had a great expression for it this weekend: they’ll be “off the books.”

But I’m kind of a motherly person, I guess, whatever that means. I’m a motherly person every day to just about everyone who will allow it, even people who are older than me. I take an affectionate interest in people’s pursuits and a vicarious pleasure in their successes. I like to cook and knit and do crafty things. Awkward holidays notwithstanding, I like being a mom.

And sometimes I’m good at it.

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Misty morning

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We are maybe one quarter of the way through our day here, procedure-wise. We left the apartment at 5:50am to catch the bus to the hospital. We arrived here at about 6:20 and enacted a little circus, going to all of the check in rooms we had been to yesterday while I hunted through my ever-expanding medical folder for directions to the all-new check in room we were supposed to be at today.

We got Merlin settled in with anesthesia. The anesthesiologist was nice, and he sounded like Sara’s fiancé Max, which was reassuring. He spent some time arguing with people about streamlining her day so they wouldn’t be moving her unnecessarily while she was out.

They had trouble finding a vein for the anesthesia port, so they decided to put her to sleep with gas first. She got horchata scent added and was asleep within a minute.

We just spoke to the radiologist, and she said the MRI was done. They’ll keep her in recovery until they wheel her to the angiogram.

Dr. Sneed (the radiologist) said yesterday that there was a 50% chance that the staged treatment could remove the avm entirely. That’s the first we’ve heard of it, so it probably isn’t likely in our case, but now I can’t help hoping maybe it can be done.

The nurse just came by to say that she is in the angio and that everything is going well. Everyone here is very calm. A few of them have mentioned that they do this every day. I’m glad we’re here.

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I Kind of Love San Francisco

I’ve not been able to get on my computer, and I detest typing on someone else’s, so I haven’t been blogging as I’d hoped, but I’ve taken a few pictures and bought a few souvenirs and written a few things down, so I’m hoping to reconstruct.

I am currently typing this on my phone, which I find utterly unsupportable and yet preferable to borrowing William’s computer. I downloaded the app to do this ages ago, but because you had to go through an additional step to allow mobile access if your blog was self-hosted, I had never competed the process of setting up to post.

Needs must.

Anyway, San Francisco is gorgeous tonight. If I knew how to post photos directly from my phone I’d show you.

Today we went to a little coffee shop called Hollow, then to the California Academy of Science and then to doctor appointments. We did quite a bit of walking and public transport in between all those things, and then we went for Chinese food at the Nan King Road Bistro which had, hands down, the best sesame chicken ever. Merlin ordered it, but we all ate it.

Overall, the doctor appointments have been very encouraging. We go to the hospital at 6:45 tomorrow. They will do an MRI, an angiogram, and then the gamma knife. A physicist(!) will make a treatment plan from the MRI and angio, so we will know how many more visits they plan. It’s going to be a long first day to a long road ahead.

ETA: an evening view of the street from our apt.

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School’s Out

It’s been a long day. Partly because I put off grading and partly because students put off turning things in. In any case, the day is over, and all my grades are in. The semester is done. I am all done teaching! We leave at 5am for the airport. This time next week, Merlin’s gamma knife will be done, and we’ll be headed home the following Saturday.

We went to book people to get books for the plane ride, and I came away with 2 “The Best American Comics” anthologies that I was missing. I was shocked to see them there. Merlin picked up a journal and  John Green book. I grabbed the Lonely Planet guide to San Francisco and St. Augustine’s Confessions. William got Fables. Gavin said he had something already. We’re all set.

It’s hard to believe that Nana died six years ago today. It seems like a lifetime ago.

I am tired and going to bed. I just wanted to post before signing off for the day.

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Journaling function: toggled on

I am going to attempt to update briefly every day for awhile. I probably won’t link all of the posts to facebook because that seems tedious. I began journaling online in 2003, and the original intent was to try to preserve as much of the feel of the ridiculous day lived as possible in a format that might not be burned.

I’ve moved through multiple platforms and identities in my search for the right and responsible way to be honest in my writing, and I have recently imported everything I can find from those other journals in an attempt to have one complete record. In the beginning, I spent many entries on posting quiz results because I was either too tired or too distracted or too unhappy to post what I was really thinking, but I was committed to posting frequently. All of those types of things would go on Facebook or Tumblr now, I suppose. I didn’t really know what to do with the internet at the time, and I’m still not sure I know. In many entries, my family will appear by their long-standing pseudonyms: BetterHalf, FirstBorn, and Pippin. I probably won’t bother to change those. I probably will go through and delete all the fic recs and “which LoTR character are you?” entries. I’ll have to revise my language in quite a few of them, I’m sure.

There are still things I can’t write about here. I still have paper journals. Sometimes I can’t write in them either. I completely get why Pepys kept his diary in code. It’s not even that anything I think or worry about is that horrible, or that anyone would care if it were. It’s mostly that, put in print I can see what a great mess it all is. What a tangle of contradictory impulses and beliefs and regrets. How any of us live under the ephemeral weight of it is beyond me. How I would get through the day with it all physically manifested, looking back at me from the page, is quite unimaginable. But I am trying to do it a little bit at a time. I’m trying to spill some of the contents and look at the impossible coexistence of some of the things I think and get comfortable with the idea.

On Wednesday morning we leave for San Francisco. We are as ready as people get for such an adventure. I hope we are doing the right thing. As the date approaches, I feel more and more anxious, more like our “reasons” are really “rationalizations,” put forward because we are too afraid of thinking that we can do nothing. Better to do something and fail than to do nothing. We suspect, from experience,  that’s not always true, though. It’s hard to measure what doesn’t happen.

Anyway, I have a flurry of grading and two more classes to meet with, and a lot of packing to do. I slept in this morning since I didn’t have class (and I had a Thai coffee at 8pm last night that kept me up for hours. What was I thinking?), and then B came by for lunch, and I made salmon, rice, spinach and strawberry salad, and summer squash. Lots of summery “s” foods. It was lovely. Now I am probably going to clean the whole house to avoid grading, and then I am absolutely going to finish the comments on people’s grades.

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Learning things and living lightly

Well, damn.

I think I’ve figured that my best writing time is mid-morning, which is currently packed with teaching classes. I reverse-engineered this discovery. What I really learned was that what I like to do in the evenings is drink wine until I feel sleepy. I suppose I could ask my doctor for sleeping pills (Given the continual stress I’ve been handling since at least December 29, I doubt any reasonable doctor would refuse me.), but despite having the same primary care doc since 2005, I don’t feel like we know each other well enough for me to make such a request. Also, sleeping pills might impinge on my freedom to be social, and since I have to leave Austin early, I’m not interested in that. I’ll have plenty of time to sleep in Ann Arbor where I don’t know anybody.

All of this lovely self-revelation is courtesy of Weight Watchers, which requires you to write down everything you eat and tally up points. I am assigned the smallest number of points possible because I am short and only 10 pounds out of the recommended range. My eating is utterly reasonable. I can easily eat within my points range. What I cannot do, ladies and gentlemen, is drink within my points range. I have had three 4 ounce glasses of wine this evening, which is half of my points! And I wanted a latte today, but decided against it in deference to my evening habits. If I could fall asleep at 10pm, I think I’d probably be gold. Since I can’t, I have to fall back to Weight Watchers lessons of old: work out enough to compensate for wine. So if you’d like to spend time with me, ask me to walk or bike or swim. I’m all over it.

In other (wine-drinking provoking) news, I seem to be having Serious Conversations at least twice a week. We leave for San Francisco in a week, so I’m not surprised. I’m thoroughly prepared to handle these conversations. I appreciate that people are concerned for me and that they feel free to express that concern openly. All good things. I am slightly more fractured than the facade I put up. I am ridiculously hopeful and very skeptical of that hope. I don’t have any faith or superstition to speak of, and my trust in medical science is ambivalent. However it turns out, I’ll be leaving for Ann Arbor a month later, and that distresses me.

Excuse me while I pour another glass of wine.

I don’t know that there is a trick to it. I have a ridiculous number of both rational and irrational fears. They are all based in possible futures. I can’t not think about all the possible consequences, but there is really very little I can do about most of them, the decisions having been made. I would consign them to God, were I of a mind to do so. I have no control over them myself, and they are not anyone else’s responsibility. My kept-together, slightly tired look is absolutely a result of this conundrum. I’m not in control, probably no one is in control. Things are what they are, and time is precious and tedious. Go figure.

 

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It’s all Alright

I guess it’s all alright. I got nothing left inside of my chest, but it’s all alright. ~FUN

I’ve been trying to write about all the conflicting emotions brought on by the success of The Hunger Games for a month now, and I’ve been using my confusion as cover for my lack of writing. Elegant, I know.

I also have a daily “to do” list as long as my arm. Maybe I’ll print it there. Today, I don’t have a class to teach because of the TAKS test, so I’ve had breakfast and lunch and now I’m making tea. I’ve picked up the bathroom and the living/dining area. I’ve unloaded the dishwasher and swept the kitchen floor. I’ve stacked all the papers I need to grade on the dining table, flicked through facebook and twitter, done internet searches for what to wear if you’re short-waisted, what are the symptoms of Factor V Leiden, and how to adopt a GI diet. I’ve emailed the appropriate person to get one of my ACC students reinstated in class since it turns out he submitted his research paper ages ago in a response to a course announcement. I still haven’t accomplished any of my real work for the day, but I’ve kept busy.

I got a call from our pediatrician last night because Gavin’s bloodwork indicates that he has Factor V Leiden, like Merlin, and he’s also showing signs of being insulin resistant (pre-diabetic). He’ll need to see an endocrinologist at some point. I guess that means big changes around here and more effort from me and William, which we seriously, seriously do not have to give.

We had a few days at the beginning of the month where it looked like the apartment management was going to try to evict us, but we took out a consolidating loan to cover the rent and pay off the credit cards. I’m charging them back up now to buy clothes, gas, and food. If I can keep it somewhat manageable, I should be able to pay it down with my Michigan reimbursement (provided that comes through like it’s supposed to).

I found out about mid-month that I got the Rackham Merit Fellowship, which is a great honor, and I’m all kinds of pleased, and it solves the summer money dilemma brought on by ACC cancelling my summer class, but it means I’m moving up to A2 on June 13, and I’m not ready. So I should be celebrating. I’m trying to celebrate? It’s too much effort to celebrate yet, I think.

I had another mild allergic reaction to nothing last night (my 6th in the last two months). I don’t know if it’s worth seeing anybody about. Now that I know what it is, it goes away pretty quickly when I treat it early.  Mostly, I just need my skin to cooperate long enough to take a picture to send to Michigan for their grad student brochure. And I have to write a bio! I don’t even know how to deal with that right now.

On the plus side, I’ve been sleeping great. I’m chalking it up to resignation.

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