hmmmmmmmmm.......: November 2006

Tuesday, November 28, 2006

Loopy-Loopy dialogue

Me (calling from our house): Hey Lovey, where's your ... [boring logistical discussion follows]

Me: So it's really nice to be home. I really miss it. Do you think we could maybe think about moving home soon?

Loopy: OK.

Me: I know you're scared, but maybe you're being affected by your memories of all the months when you were in so much pain and you were all alone so much of the time. It will be different now.

Loopy: Yeah, maybe.

Me: So, you know, I don't want to push you or anything, so if you're not ready that's okay, but maybe next time I come out here you could come with me, just see how it goes?

Loopy: Uh huh.

Me: You could try the stairs, and maybe it'll be like, "Whoa, this is impossible, not yet, no way," but maybe it'll be like, "Wow, this is nothing, I don't know what I was worried about."

Loopy: OK, yeah.

(pause)

Me: It's just really nice to be home.

(pause)

Me: Hello? Are you there?

Loopy: I'm sorry, I'm just trying to watch this really important show about how to make chocolate-dipped pretzels.

Monday, November 27, 2006

marie antoinette

just got back from the movie Marie Antoinette (first film w Loopy in months & months! yay us!)

anyway... many of you know that for a long time, for as long as I can remember, I have been convinced that the world as we know it is coming to an end within our lifetime. call me pessimistic or apocalyptic or crazy... I've always felt that way.

News about global warming just confirms this conviction... did you know that the Amazon rainforest (what's left of it) seems to be rapidly drying out and burning down, and may be a savanna within just a few years? Seriously. And when that happens it will kick off further events in a chain reaction of cataclysmic climate change.

I have long hoped or dreamed (with my "optimism of the will") that perhaps people could get together and plan how to wind down the machinery of capitalism and create something different... although the "pessimism of the intellect" tells me that it is far more likely—if you look at other catastrophes in history—that people will turn on each other, dividing along racial, ethnic, or some other lines, and begin killing each other. Who knows what will be left.

Anyway, watching the movie tonight, it struck me strongly that the hapless Marie Antoinette seems very much like us, collectively—Americans, Europeans, everyone.

We know that all is not well. We know that there are signs of profound trouble brewing, and yet, we aren't quite sure what to do about it, so we just keep doing what we've always done. We can't quite make ourselves believe that the threat is real, or that life will not always be exactly as it is now, with iPods and cars and Lands' End catalogs pouring in at Christmas.

Sleep tight, o fellow Versailles residents. The mob is not yet at the door.

Monday, November 20, 2006

powerlessness

Tonight Loopy was in pain again, so, since I had to go to the store anyway, I bought her:
  • extra-strength tylenol (we just got the ok from the doc to use it to supplement her other meds)
  • the National Enquirer (did you know Kevin was beating Britney??? "The Punching! The Slapping! The Story No One Else Has The Guts To Print!")
  • an extension cord so she can plug in her computer and her heating pad at the same time
  • our favorite low-cal/low-fat dessert, Klondike Slim-A-Bear ice cream bars


As I hauled them all out of the bag and piled them on the table she said, "oooh, you do love me!" and later, munching on the ice cream, she said, "oh, Lovey, Slim-A-Bear makes everything better!" I felt like the hero and my anxiety calmed down a little.

Yes, I've been feeling anxious. Anxious, guilty, and inadequate. Even though I'm rushing around all day—doing laundry, doing errands, getting things from stores and from home and organizing and setting up the new apartment—some days I literally couldn't do anything more than what I did—I've been feeling as though I'm not doing enough, that I'm screwing up, letting Loopy down.

This isn't total delusion. I've worked hard to be ready for our trip tomorrow, but it's already late and I still have to do the dishes, another load of laundry, take out the garbage, and pack. I'm doing my best and it's not good enough.

When I try to leave the apartment to do something for myself, I feel a thousand times more guilty. How on earth can I be so heartless as to leave Loopy alone, struggling from one room to another on her wobbly legs, stuck and frustrated when she can't make her reachers pick something up from the carpeting, or can't get her wheels over my shoes that I've left in the hall... How can I leave her in this situation just to do something purely selfish???

It should be emphasized that Loopy does nothing to promote this crazy way of thinking. She tells me I'm being silly, that these are just feelings, that she thinks I'm doing a great job, that I should take better care of myself, etc.

In the last 36 hours I've started to really try to take a look at this obsession with guiltiness, and am thinking it's nothing more than a huge struggle to avoid facing the horrifying powerlessness of this situation.

It's the same reasoning that makes children blame themselves for abuse, because the reality that they have NO CONTROL over the abusive situation is much, much scarier.

A random, rare illness with no known cause is also situation of total powerlessness. Sure, we can do our best under the circumstances, and sure it could be much much worse and thank goodness it isn't, but that doesn't change the fact that we've been blindsided by the universe.

Any situation of powerlessness is a reminder of our fragility, our vulnerability, and our ultimate inability to prevent our own death.

No wonder so many people respond to our situation with a dismissive, "I'm sure everything will be fine," and refuse to hear that Loopy may not fully recover. I don't argue with them, but it makes me feel alone.

I mean, maybe it will all be fine, and maybe it won't—and all the spunk and spirit and positive attitude in the world may not make any difference at all to those little nerves struggling to re-grow in Loopy's muscles.

Anyway. We're off to Loopy's sister's tomorrow, so I gotta pack. Hope you have a good Thanksgiving... ours will be memorable, that's for damn sure, thanks to Loopy's unintentional reunion with her estranged-for-decades mother. Maybe the National Enquirer will cover it...


Sunday, November 19, 2006

changing frames of reference

1.

When I first moved here—I think I've blogged about before but—when I first moved here from the fashion capital of the universe, I was horrified to think, "Oh my god, in a couple years I'm going to get fat and start wearing tennis shoes all the time! I'll probably even use drugstore shampoo! And worst of all—I won't care!!!"

Needless to say, all those things happened...and indeed, not only do I not care, but I'm horrified at the shallow and silly creature I was back then. Hee hee.



2.

In February of 2001, the first birthday I spent in the Midwest, I wrote in an email, "We're going to Milwaukee for my birthday and I'm so excited!!!" After some reflection, I added, "Well now, that is definitely a sentence I never thought I'd utter in my entire life." Milwaukee continues to seem like a fun and happening place (great Mexican food for one thing!), and New York is sort of receding into the mists of myth and legend....



3.

"Oh, wow, this is SO COOL!!!!!!!" Loopy announced a few minutes ago.

"What?"

"The drink holder on my walker also snaps onto my wheelchair!"

"Wow! That is cool! Yay!"




In other words, we've adapted... it mostly seems normal, the walker, the wheelchair, etc. Loopy sleeping all the time seems temporary; the other stuff, who knows. It's all good.

Another change: Loopy was interested to see how people would treat her out in the world in her wheelchair, with her walker, etc.

When she was 100 pounds heavier, people looked past her or through her, as though embarrassed for her, unwilling to see her or acknowledge her existence. But in recent months, that had started to change. But, she had just started to get used to being visible when she became disabled. She was wondering how that would affect things.

My observation is that people are incredibly, incredibly nice. It's really quite amazing. It's sort of like the opposite of being invisible. Maybe I'll get tired of it after a while but so far, it's remarkably pleasant... like we've somehow shifted to an alternate universe of sweetness and light, where people say "excuse me" if they pass within four feet of you, and if you say, "oh, sorry," they say, "oh no no no, you're fine, you're fine!" And everyone gives you sweet, sweet smiles.




Tonight we are taking a break from the hard work of being a sick person and a caregiver, respectively, and watching an old favorite movie of ours, High Fidelity. We tried to make popcorn but we set the microwave on fire. Oh well.

Sunday, November 12, 2006

home is where again?

just dropped by the house (the actual house, the one in the country, as opposed to the apartment in the city, as opposed to the apartment in town, as opposed to the hospital) to pick up some stuff.

i have a lot of emotions being here. i miss the dogs. i miss our life.

but the life before Loopy was in so much pain all the time, that's a long time ago at this point. i feel like I can hardly remember it. recent life in this house was dark and claustrophobic, as if fogged over with Loopy's ongoing struggle.

and before that there was my ongoing struggle, to finish my certification, to get my life together.

so the house has a lot of emotional "stuff" packed into its walls and furnishings.

it also has a lot of physical stuff packed into its closets and corners. my next project was to clear all that out. i was just getting going on agonizing over that...so i feel like i got a "get out of jail free" pass because i don't have to worry about it right now. but i also feel like it's hanging over my head; as soon as we come back here i have to take care of it. i feel defeated before i start. in comparison the apartment feels fresh, a clean slate. if also barren.

there was one thing i wanted to record about my last visit here, which was the night before Loopy's surgery. i had been wondering what people do, who don't pray. i wanted to ask someone or something for help with the feelings, for help making the surgery turn out ok. we all want desperately to be able to control what we can't control. but i believe we do better admitting our lack of control than trying to pretend that we can ask for supernatural assistance.

i planted some Persian blue alliums in the garden that night, a gift for Loopy to enjoy in the spring. there were so many feelings as I prepared the earth and pressed the bulbs into the soil, racing against the gathering darkness that--just a few days after daylight savings time--came so much earlier than I expected.

as i replaced the soil and watered them in i felt a sense of satisfaction. somehow just planting the bulbs felt like my prayer; it was a gesture of hope. planting anything is a gesture of hope. they are under there, hopefully doing whatever they're supposed to be doing at this time of year, but we have no way of knowing if they are or not. we just hope they will come up in the spring, hope that they will bloom into the sweet air of a better time than now.

Thursday, November 02, 2006

email update: post-surgery

I remember when the surgeon came out to talk to us, I jumped up in a such a hurry to get to him that I fell over a table. lol. Here's the email:

Everything went well, and she's awake and moving around and talking to the doctor. Yay!

Here are the things that we were worried about & their outcome (all positive) -

  • paraplegia (temporary or permanent) ? - nope! - moving her legs and feet just fine!
  • malignant tumor ? - nope! - it's one of two kinds of benign tumors; they will be more precise about the type in 3-4 days.
  • incomplete resection ? - nope! - (the surgeon said if it was stuck to other things that couldn't be cut (arteries, primary nerves) he would have to leave a piece of the tumor, so she would need radiation to keep it from growing back. But that didn't happen. As I understand it there will be no need for chemo or radiation).
  • remove part of the dura ? - nope! - (the surgeon said that if the tumor was attached to the dura (the hard sheath that protects the spinal cord) he might have to remove a piece of the dura, which would require a patch, which could lead to a leak of spinal fluid and more surgery, etc. But that didn't happen either).


More good news - they had her hooked up to all kinds of monitoring equipment to test electric signals from her brain through her nerves to her feet and hands - this was primarily to prevent cutting any important nerves. But because of the monitoring they were able to see that, as soon as they got the tumor out, the nerve signals on her right side bounced back immediately. The surgeon said that that might not translate to improved function right away, but it's a very good sign.

Yay for Dr. K____! Yay for Loopy! (that's what I call her :-) ) Yay all around!

Four friends came to sit in the surgery waiting room with me (and with each other, as they are all dear friends of [Loopy]’s and were plenty worried in their own right). I made them do "the wave" after we heard the news. :-)

This morning before [Loopy] went into surgery we talked about how we both feel ready for the next phase, whatever it holds, and we'll get through it together. Now that we know it looks very positive, I'm even more cheerful about it. The surgeon confirmed that the prognosis is still 4-6 weeks to regain many functions, and 4-6 months to be fully back to normal. I will keep on keeping you posted.

I'm so grateful for all your support. Thank you, thank you, thank you. It means a lot to know that your thoughts are with us.

Love
[me]

email update: mid-surgery

Sitting here with several friends in the surgery waiting room. We just got a call from the OR to say that everything is going really well and "the patient" our dear [Loopy] is doing really well. I didn't feel too nervous until the call came and I realized how much I felt relieved. They promised they would call out every couple hours to let us know how it's going, but I didn't really believe they would (that has never been my experience of surgery waiting rooms!) But they did!

This morning, the surgeon told us "we have a great team!" and he looked really happy about it (he told us a few days ago that he would be assigned a senior resident to help with the actual surgery, because he needs to work on both sides of the table at the same time--so I'm assuming that he means he got a resident he likes and works well with, as well as other good people).

Also, both the surgeon and one of the nurses told us we got one of the best anaesthesiologists, which is very encouraging; [Loopy] sometimes has trouble with anaesthesia (specifically, regaining consciousness during the operation!) and this was very reassuring for her so she could go into the procedure calmly. After all, she doesn't have to do anything else at this point--as the surgeon said, with a smile, "All you have to do now is go to sleep. We'll see you tomorrow." Dr. K___ really is a gem. He came to see her almost every day, sometimes more than once a day, since she checked in last Friday, always acting like he had all the time in the world to listen to her and pay attention to everything she had to say.

She was in quite a bit of pain as she left to go into the OR (we were allowed into the pre-op area with her, which was wonderful) which I think put us all ([Loopy], her friend, and myself) in the mood of feeling glad that this particular phase will soon be over. The pain henceforth should be a lot less, and also more familiar to the nursing staff and therefore much more manageable. We don't know what else we'll be dealing with or how the recovery will go, but at least the months and months of ongoing, mysterious, intractable pain are most likely at an end.

Well, I"ll keep you posted. [Loopy’s sister], can you please call me at [number] with your work phone number? I realize I don't have it and I want to call you first when she is all done.

Thanks again for your good wishes and other support. It is wonderful to know you all and to be related to most of you. :-)

Love
[me]

email update: night before the surgery

So, after a quiet weekend there was an acute episode early Monday, so the pain doctor was summoned and put [Loopy] on a new medication, which made a dramatic difference. Her pain is caused by nerve constriction rather than the usual sources of pain (inflammation, swelling, bruising, broken things, etc) so the spasmodic firing of nerves is more like a seizure than like those other kinds of pain. So they put her on a seizure medication, neurontin, as well as doubling the morphine. Last night she finally got a solid night's sleep (five hours and then two more) and her usual morning misery was much shorter and less intense than usual.

So, tomorrow's the big day. Typically, they just finished all the prep a few minutes ago, giving [Loopy] only about four hours to sleep before the surgery, but she did have a nap this afternoon. Her friends had a party for her in her room with lots of wonderful food (the nurses' station appreciated the leftovers!) and her friends also have set up a schedule of people to sit with me during the surgery, which I greatly appreciate (so I kept all the dessert-y leftovers to reward you with!)(And yes, Miri, you're on the schedule :-) )

Several people have asked about the schedule for tomorrow. [Loopy] will go into pre-op at 6 am to be ready for 7:30 am surgery.

6 am in Wisconsin =
5 am in Arizona
4 am in California
noon in the UK
1 pm in Europe
9pm in Japan.

The surgery should take about four to six hours; the doctor said he would come and find me sometime between 12 and 2pm. After a couple hours in the recovery room, she will move to an ICU for safety's sake at least overnight. After my Mom was in an ICU in August I have grown to love the ICU... it feels so *safe.*

Unfortunately I won't be able to sleep in the room with her in the ICU (did I mention that since we moved to "neuro" I have an actual bed--like the one in a hotel that they wheel in for the extra guest? And I thought the chair-bed in "cardio" was cool!!)

But there are lots of places nearby where people sleep--I've seen them every night on couches in waiting areas and other nooks and crannies, and the nurses bring sheets and blankets and pillows so they look very comfy. So I will do that too at least for the first couple nights.

People were telling me to go home and not sleep here at the hospital because they thought that would be taking better care of myself, but as it turns out, I get a lot more sleep here than at home--I'm a lot happier here, and I'm around when she needs anything I'm right there (although we agreed after the first night that I would not get up in the night but rather let the nurses take care of her).

Also, the thing is that her worst times are always early in the morning, and I'm just not enough of a morning person to get up and drive here that early. I do get out during the day and go to the gym, go for walks, go out to eat (and bring back yummy stuff!), but I just am too sad and lonely to be

So anyway, about tomorrow: I've said before, the prognosis is very good, but the surgery is very delicate, but the surgeon is excellent. So we are cautiously optimistic, though that doesn't stop me from worrying. :-)

I will certainly keep everyone updated, and I have *so* appreciated your supportive emails and messages even though I haven't been able to respond to each one. It really helps. Thank you.

More amusing notes: her nurse today is Nurse Slaughter (seriously), and we've collected another name for our surgeon Dr. K___ (aka Dr. Coo and Dr. Cow): Dr. Coo-Woe.

Take care all... I feel like left out some crucial bitof information... but what was it.I'm too tired to think of it right now.

love
[me]