going through and reading the old emails, inserting them into the blog...
one thing i'm noticing is my sort of brave tone... i refer to (but don't talk much about) hard things in the emails. i remember that. it seems like a clean, clear lack of self-indulgence.
as i recall, it was kind of a necessity: i couldn't afford to wallow. each moment's challenge was all that that moment could hold and i had to just stay in the moment, deal with its challenges, and not think too much.
but one memory that's almost funny now, and was really quite almost-funny at the time: in an October 30 email, i wrote, "I had a bit of a meltdown yesterday (Sat) because the surgeon listed all the terrible things that could possibly go wrong and it was just a bit overwhelming..."
I know when that was - I was at the gym, doing my stretching exercises, when I became irrationally convinced that Loopy was going to die during surgery and I only had a few days left with her, and I better get back and be with her. I started to cry rivers, though I kept doing my stretches and finished my workout (keeping to one of the major tenets of that period: maintain adequate self-care).
so at one point during this soggy workout i was walking briskly down a small flight of stairs to refill my water bottle. up the stairs came a large group of prospective members taking a tour of the facilities. the tour guide was describing all the wonderful things they had at the gym, but the incongruous sight of me coming down the stairs with tears streaming down my face made the tour guide lose his train of thought and all the tour people fidget. (that is such a Madison thing, too - to be unnerved by any show of emotion. heh.)
Another memory, or elaboration on an email from the middle of the night between Nov. 1 and Nov. 2: i wrote that "there was an acute episode." A brisk and brave (?) way to brush past something really awful. (There's no obligation to read all this, I'm just hoping it will be kinda therapeutic for me).
I had slept at home (home home, out in our small town 25 miles from the city, 30 miles from the hospital). It seemed like a good thing to do, a self-care thing to do. But it wasn't at all.
I hated being so far from Loopy, not being able to help her, take care of her. People told me "the nurses will take good care of her" but they don't. That's why you stay with people who are in the hospital. Even good nurses can't do and see everything.
So in the mornings, she always used to wake up in terrible pain. The horrible pain would wrench her awake and though pain pills were administered immediately, it would take us an hour to get it back down. (Some nurse eventually got the hang of it and would give her a pain pill a half hour before she usually woke in agony, and we LOVED that nurse!)
However, the morning I wasn't there, the nurse who came to [Loopy] in her hour of need refused to give her her pain pills until she 'calmed down' and got a 'better attitude' if I remember the phrases accurately. (The nurse never actually apologized for that episode but later explained that she was accustomed to patients in 'neuro' who did not have the rationality to decide when they should have their pills).
For those of you who know Loopy, you can imagine the fury this provoked. She was screaming at the nurse and all hell was breaking loose... she was saved by a lovely man in pink scrubs who came in and calmed everyone and told the nurse to give her her pain pills. We love that man to this day... I still have his business card floating around my car for some reason... makes me happy.
So obviously I didn't spend another night away from her for... I think 17 days.
Showing posts with label hospital. Show all posts
Showing posts with label hospital. Show all posts
Saturday, October 25, 2008
memories & records
heh, after i wrote so much reconstructing my memory of october 27, 2006, i found that the very next email (posted here) to family and friends was a (much less lugubrious) discussion of the same events. I didn't change the post below; mildly interesting to compare the two.
memories.... (sing along now...)
So it's coming up on the 2-year anniversary of Loopy's big surgery ordeal... i've been dreaming about it and feeling sad all week (there are a couple other reasons i've been feeling sad, but trying to stay on topic here... )
i went back to read old blog entries and realized a lot is missing because i started emailing everyone... so i'm slowly putting the emails into the blog. i'll post my today-thoughts here as i do this... no need to read this, it's really very internal and i'm sure none of you want to remember all that any more than i do, it's just i feel the need to kind of go through it and ... i don't know... purge it a little?
first entry updated... checking Loopy into the hospital.
i remember why we decided to go. her pain had been so awful for months and months. she had fallen on the concrete at the gym and almost not been able to get up again (see this post, under "that mean bad concrete came up and whapped me in the face!"). she had started using a cane (i still remember the weird horror of that, the doctor fitting the cane for her and helping her walk across the room with it, the way everything seemed to be going dark and awful and yet the fluorescent lights gleamed inexorably on and everyone was doing their best to be brave and positive and even funny when we could manage it...). (and that only the latest in a series of visits to the spine clinic, visits for medication, for tests, for getting special orthopaedic back braces...)
but that day, October 27, in the living room, she was trying to stand up and she was swaying, couldn't get her balance, almost fell over to one side and then the other and had to catch herself, and almost couldn't - almost went down right there in the living room, to maybe bang her head on something or hurt herself worse.
i felt so helpless. the pain had been intermittently unbearable - she would have episodes of almost crying (Loopy never cries) and begging me to do something, anything - i would make calls and demand that someone do something, anything. (it was this that finally got us that second MRI that showed the tumor).
that day the pain was worse than ever and now this swaying, falling. i felt totally helpless. i called everyone i could. "i can't keep her safe, she is going to fall, do you hear me, she is GOING TO FALL, and her pain is out of control. we need help. we can't do this anymore."
the consensus was, go to the hospital. check into the hospital. but there apparently was no way to do that except to go through the ER.
so we went to the ER. me in that state that had come to be so familiar that year. one foot in front of the other. ready to fight when needed, waiting in between, trying to rest my mind and body as much as i could. i remember parking the car somewhere illegal and thinking, 'tow it, i don't care, i'll deal with that later.' (they didn't; probably, cars parked haphazardly and illegally around the ER entrance is not an unusual phenomenon).
and we had to fight to get her checked in. even though we had talked to her primary care doctor, the spine specialist, the surgeon's nurse - we had talked to everyone and they had a bed for her upstairs. the ER nurses were on our side. but this stupid mean bitch doctor in the ER wouldn't fucking check her in. she kept saying, "what are they going to be able to do for her upstairs? there's nothing they can do." (and she was fucking mean too - no empathy, just annoyance and attitude, like how dare we waste an ER bed on her shift - and she had the most hideously ironic name - it meant "kindness goodness" in two languages).
we were there for hours. i see the time stamp on my email (telling people we were going) is 12:09. i think we left around 1 or 1:30, got to the hospital around 2 or 2:30, and didn't get upstairs til after dark for sure, and i think it was about 6:30 or 7. as time wore on the ER got busier and busier because it was Friday of Halloween weekend. (Halloween's a bfd in Madison, ugh).
i just remember doubting myself briefly, and then gathering courage from knowing that i could not, i absolutely could not, keep Loopy safe at home. i just kept repeating that to them. 'i cannot control her pain or keep her safe at home.' it felt like they sent all these forces against me and i just stood firm on that, and knowing that i would get her in there, i had to, there was no going back.
in the middle of this, beloved friend Shamus arrived with sandwiches, which we desperately needed at that point (i believe my sandwich got cried into). i can't remember how that went down - whether he called or just showed up - but i'm pretty sure it was all his idea. he was an immense support in one of the worst hours of my life. i wish we were still in better touch with him, but he's one of those friends you never lose, even if you're out of touch for a while...
Shamus's dad is a doctor and he encouraged me to put things in more lawsuit-friendly words, like, 'you will be responsible if i take her home and she falls and is injured.' and also to stand my ground. as i recall. that whole day is a weird combo of razor-sharp details and blurry misery. anyway. Shamus was a lifeline, a godsend. thank you Shamus. we still love you so much.
finally they checked her in and we ended up in the cardio ward because that was where a bed was available. they said they'd have a bed in neuro in a day or two (they did). i remember the infinite kindness of the nurse who did the intake. i am so grateful to her too. in those awful times, simple kindness is such a HUGE thing.
as i recited the litany of events and tests, landmarks on the 'how did we get here' path, which i had recited to each new doctor and knew well ('by June she was starting to feel numbness; in July she had a cortisone shot;' etc. - this had become my job, along with managing all the meds etc, since Loopy was too strung out on pain and morphine to be able to remember anything....) as i recited that familiar litany i remember how the nurse's kindness slowly eased my frazzled nerves and i calmed from anxious defense/offense posture ('she deserves to be here dammit!') and gratefully accepted their compassion and gentle help...
it was such a haven after everything we'd been through. finally i wasn't alone. finally we had trained professionals. finally there was some pain relief. Loopy still had horrendous symptoms and i don't even want to talk about all the ways we struggled through those days and the things i did to help her through. but it was better and i wasn't alone and we were safe there. she wasn't going to fall down. it was a haven and a relief......... it woudln't start to seem a prison for another month.
This post is already so long... but i do want to keep going through these old emails and posting some... keep the record accessible.... but i'll stop this post for now.
i went back to read old blog entries and realized a lot is missing because i started emailing everyone... so i'm slowly putting the emails into the blog. i'll post my today-thoughts here as i do this... no need to read this, it's really very internal and i'm sure none of you want to remember all that any more than i do, it's just i feel the need to kind of go through it and ... i don't know... purge it a little?
first entry updated... checking Loopy into the hospital.
i remember why we decided to go. her pain had been so awful for months and months. she had fallen on the concrete at the gym and almost not been able to get up again (see this post, under "that mean bad concrete came up and whapped me in the face!"). she had started using a cane (i still remember the weird horror of that, the doctor fitting the cane for her and helping her walk across the room with it, the way everything seemed to be going dark and awful and yet the fluorescent lights gleamed inexorably on and everyone was doing their best to be brave and positive and even funny when we could manage it...). (and that only the latest in a series of visits to the spine clinic, visits for medication, for tests, for getting special orthopaedic back braces...)
but that day, October 27, in the living room, she was trying to stand up and she was swaying, couldn't get her balance, almost fell over to one side and then the other and had to catch herself, and almost couldn't - almost went down right there in the living room, to maybe bang her head on something or hurt herself worse.
i felt so helpless. the pain had been intermittently unbearable - she would have episodes of almost crying (Loopy never cries) and begging me to do something, anything - i would make calls and demand that someone do something, anything. (it was this that finally got us that second MRI that showed the tumor).
that day the pain was worse than ever and now this swaying, falling. i felt totally helpless. i called everyone i could. "i can't keep her safe, she is going to fall, do you hear me, she is GOING TO FALL, and her pain is out of control. we need help. we can't do this anymore."
the consensus was, go to the hospital. check into the hospital. but there apparently was no way to do that except to go through the ER.
so we went to the ER. me in that state that had come to be so familiar that year. one foot in front of the other. ready to fight when needed, waiting in between, trying to rest my mind and body as much as i could. i remember parking the car somewhere illegal and thinking, 'tow it, i don't care, i'll deal with that later.' (they didn't; probably, cars parked haphazardly and illegally around the ER entrance is not an unusual phenomenon).
and we had to fight to get her checked in. even though we had talked to her primary care doctor, the spine specialist, the surgeon's nurse - we had talked to everyone and they had a bed for her upstairs. the ER nurses were on our side. but this stupid mean bitch doctor in the ER wouldn't fucking check her in. she kept saying, "what are they going to be able to do for her upstairs? there's nothing they can do." (and she was fucking mean too - no empathy, just annoyance and attitude, like how dare we waste an ER bed on her shift - and she had the most hideously ironic name - it meant "kindness goodness" in two languages).
we were there for hours. i see the time stamp on my email (telling people we were going) is 12:09. i think we left around 1 or 1:30, got to the hospital around 2 or 2:30, and didn't get upstairs til after dark for sure, and i think it was about 6:30 or 7. as time wore on the ER got busier and busier because it was Friday of Halloween weekend. (Halloween's a bfd in Madison, ugh).
i just remember doubting myself briefly, and then gathering courage from knowing that i could not, i absolutely could not, keep Loopy safe at home. i just kept repeating that to them. 'i cannot control her pain or keep her safe at home.' it felt like they sent all these forces against me and i just stood firm on that, and knowing that i would get her in there, i had to, there was no going back.
in the middle of this, beloved friend Shamus arrived with sandwiches, which we desperately needed at that point (i believe my sandwich got cried into). i can't remember how that went down - whether he called or just showed up - but i'm pretty sure it was all his idea. he was an immense support in one of the worst hours of my life. i wish we were still in better touch with him, but he's one of those friends you never lose, even if you're out of touch for a while...
Shamus's dad is a doctor and he encouraged me to put things in more lawsuit-friendly words, like, 'you will be responsible if i take her home and she falls and is injured.' and also to stand my ground. as i recall. that whole day is a weird combo of razor-sharp details and blurry misery. anyway. Shamus was a lifeline, a godsend. thank you Shamus. we still love you so much.
finally they checked her in and we ended up in the cardio ward because that was where a bed was available. they said they'd have a bed in neuro in a day or two (they did). i remember the infinite kindness of the nurse who did the intake. i am so grateful to her too. in those awful times, simple kindness is such a HUGE thing.
as i recited the litany of events and tests, landmarks on the 'how did we get here' path, which i had recited to each new doctor and knew well ('by June she was starting to feel numbness; in July she had a cortisone shot;' etc. - this had become my job, along with managing all the meds etc, since Loopy was too strung out on pain and morphine to be able to remember anything....) as i recited that familiar litany i remember how the nurse's kindness slowly eased my frazzled nerves and i calmed from anxious defense/offense posture ('she deserves to be here dammit!') and gratefully accepted their compassion and gentle help...
it was such a haven after everything we'd been through. finally i wasn't alone. finally we had trained professionals. finally there was some pain relief. Loopy still had horrendous symptoms and i don't even want to talk about all the ways we struggled through those days and the things i did to help her through. but it was better and i wasn't alone and we were safe there. she wasn't going to fall down. it was a haven and a relief......... it woudln't start to seem a prison for another month.
This post is already so long... but i do want to keep going through these old emails and posting some... keep the record accessible.... but i'll stop this post for now.
Wednesday, February 14, 2007
more medical drama
so Mom has decided that what's wrong is her gall bladder, but some of the symptoms and tests indicate it could be cancer in her kidneys.
she says "why waste your energy worrying about something before you know?"
that's my mom for you--plan out what emotions to have, then have them, no muss no fuss.
meanwhile I'm convinced that (a) it's kidney cancer, and (b) she's going to have surgery for it between May 5 and 18th, which would be the third time that a family member's surgery has pre-empted my traveling to Iran.
of course, I'm much more sad and worried about my Mom's health than the trip. but damn, that would piss me off.
she says "why waste your energy worrying about something before you know?"
that's my mom for you--plan out what emotions to have, then have them, no muss no fuss.
meanwhile I'm convinced that (a) it's kidney cancer, and (b) she's going to have surgery for it between May 5 and 18th, which would be the third time that a family member's surgery has pre-empted my traveling to Iran.
of course, I'm much more sad and worried about my Mom's health than the trip. but damn, that would piss me off.
Friday, January 26, 2007
update
First, an update on the previous post: it was just a cold.
Loopy had been feeling achy and miserable for a couple days, and with everything she's been through, there were a couple different things that could have been going wrong. Our doctor back in Madison told us to just go in to the ER just to be on the safe side. Once we got to the ER she started sneezing, so it got to be a bit more obvious, but we still waited for test results.
Anyway. She's fine. Just miserable.
I must say, though, we are getting quite experienced at this whole ER business. This time (which is, what... our fifth time in the last, uh, five months?) we brought a fabulous dinner and the laptop with a DVD in it.
So, although Loopy was sick, I at least was not as miserable as usual, as we savored our sumptuous desserts and watched "Good Night, and Good Luck." (We didn't get far enough into it to review it).
All in all, though, not my favorite way to spend an evening.
This afternoon, Loopy's nephew mentioned he was cold and I got him some blankets; as I tucked in his feet, he very sweetly said that maybe I should consider becoming a nurse.
This is not the first time in the last six months that someone has suggested I might be destined to be a nurse. I do appreciate that it's meant as a compliment to my caregiving.
I am glad to do what I can to make my loved ones more comfortable. However, the thought of being a nurse is not appealing; it's like saying, "hey, you're getting really good at being in hell, why don't you spend the rest of your life there?"
Huh. This makes me think that maybe my resistance to being in hospitals is making my time there more unpleasant than necessary? Maybe if I were more positive about it, it would be more pleasant?
Naw.... don't think so.
Please rest assured that if you are among the people I have cared for in the last six months, or if I should end up at your hospital bed in the future, I don't resent it, because I love you. I've learned that I can be genuinely helpful and I'm glad to help people I love.
But I don't enjoy it either. If I don't love you, I will avoid ending up at your hospital bed. Or if I end up there, it will be for a brief visit, and I will not hold your shirt while the nurse changes your dressing.
I'm pretty sure about that.
Loopy had been feeling achy and miserable for a couple days, and with everything she's been through, there were a couple different things that could have been going wrong. Our doctor back in Madison told us to just go in to the ER just to be on the safe side. Once we got to the ER she started sneezing, so it got to be a bit more obvious, but we still waited for test results.
Anyway. She's fine. Just miserable.
I must say, though, we are getting quite experienced at this whole ER business. This time (which is, what... our fifth time in the last, uh, five months?) we brought a fabulous dinner and the laptop with a DVD in it.
So, although Loopy was sick, I at least was not as miserable as usual, as we savored our sumptuous desserts and watched "Good Night, and Good Luck." (We didn't get far enough into it to review it).
All in all, though, not my favorite way to spend an evening.
This afternoon, Loopy's nephew mentioned he was cold and I got him some blankets; as I tucked in his feet, he very sweetly said that maybe I should consider becoming a nurse.
This is not the first time in the last six months that someone has suggested I might be destined to be a nurse. I do appreciate that it's meant as a compliment to my caregiving.
I am glad to do what I can to make my loved ones more comfortable. However, the thought of being a nurse is not appealing; it's like saying, "hey, you're getting really good at being in hell, why don't you spend the rest of your life there?"
Huh. This makes me think that maybe my resistance to being in hospitals is making my time there more unpleasant than necessary? Maybe if I were more positive about it, it would be more pleasant?
Naw.... don't think so.
Please rest assured that if you are among the people I have cared for in the last six months, or if I should end up at your hospital bed in the future, I don't resent it, because I love you. I've learned that I can be genuinely helpful and I'm glad to help people I love.
But I don't enjoy it either. If I don't love you, I will avoid ending up at your hospital bed. Or if I end up there, it will be for a brief visit, and I will not hold your shirt while the nurse changes your dressing.
I'm pretty sure about that.
more hospitals!
We are still in Pennsylvania with Loopy's sister & nephew. The latter is now in the rehab section of the hospital, and well on the road to recovery, much to everyone's surprise and delight.
I was going to post about Pan's Labyrinth, which we saw a week ago. But Loopy feels crappy so we have to go to the ER.
It's probably nothing serious, but in our brilliantly designed health-care system, the ER is the only place to go if you're out of reach of your own doctor. :-P
SO I am posting just to complain that I AM SO FUCKING SICK OF HOSPITALS!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!
I was going to post about Pan's Labyrinth, which we saw a week ago. But Loopy feels crappy so we have to go to the ER.
It's probably nothing serious, but in our brilliantly designed health-care system, the ER is the only place to go if you're out of reach of your own doctor. :-P
SO I am posting just to complain that I AM SO FUCKING SICK OF HOSPITALS!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!
Wednesday, January 03, 2007
signs of spring
Today he's like, half-awake. He sometimes pats my hand or reaches to hold it. It's very endearing. "He always was very cuddly," muses Loopy, who no longer cries whenever I tell her about her nephew's status.
The nephew & I always got along fine, but we were never cuddly. This evidence suggests that we feel most affectionate when at least one of us is mostly asleep. But then, that's true of so many relationships, isn't it?
He also has been moving his leg around, and sometimes even answering yes/no questions by nodding or shaking his head ("Can you hear me?" (nods 'yes') "Are you awake?" (shakes head 'no').) It's really quite exciting. As are the moments when he sleepily tries to pull out the respirator or dialysis tubes.
So, another day past and he's still with us, and I'm almost giddy as I start to believe that he may really survive this. Knock wood, a lot.
We'll see.
The nephew & I always got along fine, but we were never cuddly. This evidence suggests that we feel most affectionate when at least one of us is mostly asleep. But then, that's true of so many relationships, isn't it?
He also has been moving his leg around, and sometimes even answering yes/no questions by nodding or shaking his head ("Can you hear me?" (nods 'yes') "Are you awake?" (shakes head 'no').) It's really quite exciting. As are the moments when he sleepily tries to pull out the respirator or dialysis tubes.
So, another day past and he's still with us, and I'm almost giddy as I start to believe that he may really survive this. Knock wood, a lot.
We'll see.
Tuesday, January 02, 2007
rakin' in the big bucks now
Last year I made $436.93 in earned income. That's a $436.93 increase over the previous year. Pretty exciting.
'Course, it took me six weeks to make that, and I used to make that every 2.2 days. But a decimation of income (not to mention respect) are things you expect when you enter the teaching field.
So, here's to moving back into the ranks of breadwinners! Cheers!
Nothing much to say. Some things seem better, some things seem worse, some things seem the same. He's still asleep.
We hold his hand, we do jigsaw puzzles, we hold his hand, we read, we hold his hand, we go home to sleep and get up and do it again. And every morning when it's the alarm clock and not the phone that wakes us up, we are grateful.
I call Loopy with updates and she cries bitterly because she wants to be here with us. I wish she were.
If we haven't used up more than our share of your goodwill, prayers, support and encouragement, we could sure use some more...
At left, Ricky as a kid; apparently he was as sweet and sunny as he looks. His mom says, "he was my sunshine baby."
'Course, it took me six weeks to make that, and I used to make that every 2.2 days. But a decimation of income (not to mention respect) are things you expect when you enter the teaching field.
So, here's to moving back into the ranks of breadwinners! Cheers!
Update on Loopy's nephew
Nothing much to say. Some things seem better, some things seem worse, some things seem the same. He's still asleep.
We hold his hand, we do jigsaw puzzles, we hold his hand, we read, we hold his hand, we go home to sleep and get up and do it again. And every morning when it's the alarm clock and not the phone that wakes us up, we are grateful.
I call Loopy with updates and she cries bitterly because she wants to be here with us. I wish she were.
If we haven't used up more than our share of your goodwill, prayers, support and encouragement, we could sure use some more...
At left, Ricky as a kid; apparently he was as sweet and sunny as he looks. His mom says, "he was my sunshine baby."
Monday, January 01, 2007
and may 2007 suck less than 2006
breaking news
on a random newswire that came up in a random search:
- 9:05 p.m.: Millions make New Year's resolutions
- 10:16 p.m.: Revelers ring in new year
- 10:29 p.m.: U.S. deaths in Iraq hit 3,000
and in other news...
here i am in hershey, pennsylvania (at least I am eating chocolate, my only nod to a new year's celebration), in a hotel across from the hospital, keeping daily vigil at the bedside of Loopy's nephew, who had a stroke just before Christmas and then, just as it seemed he was recovering from the stroke, came down with necrotizing fasciitis (also known as flesh-eating disease), a fast-spreading infection that can devour the whole body in a matter of hours.
fortunately they caught it quickly and he is young and mostly healthy, so the odds are somewhat in his favor, and, with the aid of massive antibiotics, he seems to be holding his own; yesterday we were feeling optimistic, but today there was a setback and a nurse explained to us that our optimism was premature; it could still go either way. this was all the more crushing because we were feeling hopeful yesterday. i don't know if it's better to know the truth or not.
i haven't blogged about it because i can't think of a way to talk about it that doesn't seem to sensationalize what has been happening, just because what's happening is so grotesque.
he used to read our blogs...he told Loopy how to reboot someone else's router when stealing wireless internet service.....o Ricky, I hope that sometime in 2007 you will be reading this and laughing at the scare you gave us.
gentle readers, i hope you have celebrated the new year in a happier way.
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) -
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]
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]
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]
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]
Tuesday, October 31, 2006
home sweet hospital
When I was a kid I had a super-cheesy plaque in my room with the super-cheesy proverb "home is where the heart is."
But I find the proverb increasingly less cheesy, as the hospital starts to feel like home. I return to it late at night, its signage familiar and welcoming, its sounds and procedures reassuring. I wasn't able to sleep at a friend's house, and last night at our house I just felt edgy and sad, but here on the fold-up bed next to Loopy, I feel at peace and ready for rest.
There's something else I like about it: the hospital is utterly devoid of the world's usual pretense that "everything is okay" and if you just ________ it will all turn out all right (fill in the blank with the appropriate cultural, religious, familial or advertising-slogan admonitions). You can see in almost every face you pass--the profound awareness of the randomness of life, the pain and confusion of being human, and the total lack of control that we have over some of the things that affect us most. This awareness has a million flavors--resignation, determination, bewilderment, bitterness, etc. But when you see it over and over the core of it sort of distills out....
On a more prosaic note, neuro is a stranger unit that cardiac. Next door is an older (but not elderly) man who seems to have regressed to near-infancy. He spends his time sorting colored blocks and piteously protesting any attempt to feed him, take his temperature, etc. Loopy's nurse remarked today that Loopy is an unusual patient for the neurosciences unit. "She walks, she talks, she doesn't play with her poop..." Another reminder that it could be a whole lot worse.
But I find the proverb increasingly less cheesy, as the hospital starts to feel like home. I return to it late at night, its signage familiar and welcoming, its sounds and procedures reassuring. I wasn't able to sleep at a friend's house, and last night at our house I just felt edgy and sad, but here on the fold-up bed next to Loopy, I feel at peace and ready for rest.
There's something else I like about it: the hospital is utterly devoid of the world's usual pretense that "everything is okay" and if you just ________ it will all turn out all right (fill in the blank with the appropriate cultural, religious, familial or advertising-slogan admonitions). You can see in almost every face you pass--the profound awareness of the randomness of life, the pain and confusion of being human, and the total lack of control that we have over some of the things that affect us most. This awareness has a million flavors--resignation, determination, bewilderment, bitterness, etc. But when you see it over and over the core of it sort of distills out....
On a more prosaic note, neuro is a stranger unit that cardiac. Next door is an older (but not elderly) man who seems to have regressed to near-infancy. He spends his time sorting colored blocks and piteously protesting any attempt to feed him, take his temperature, etc. Loopy's nurse remarked today that Loopy is an unusual patient for the neurosciences unit. "She walks, she talks, she doesn't play with her poop..." Another reminder that it could be a whole lot worse.
Monday, October 30, 2006
email update: surgery scheduled, more info
So, I'll try to reconstruct some of what I accidentally deleted last night.
First, a clarification: [Loopy] is staying in the hospital for another week at least. She is not moving to rehab tomorrow (today) but rather, *next* Monday, four days after the surgery.
And, minor news: a bed opened in the neurology unit so [Loopy] has been moved (she was parked in cardiac over the weekend); the new room number is ____, but I don't know if there's any point in trying to keep up with the numbers, since she'll be in one to two more different beds after the surgery. The room is slightly smaller but laid out better (i.e., you don't have to move every single piece of furniture in order to allow a person with walker and IV to get from the bathroom to the sink). Plus, [Loopy] says it's less tiring to not have to walk so far [to the bathroom and sink], so that's good.
People have asked how I'm holding up (thank you for your kind support!) Well, I had a bit of a meltdown yesterday (Sat) because the surgeon listed all the terrible things that could possibly go wrong and it was just a bit overwhelming; this morning, we pressed him for estimates of the likelihood of each of these terrible things and were reassured that all of them are pretty unlikely, so I've regained some semblance of rationality. :-)
The only negative thing that's likely post-surgery is a continuation--and perhaps temporary worsening--of her current problems with using and feeling her legs, to be addressed by lots o' PT. During the surgery they have to manipulate the spinal cord somewhat and it can become bruised, and while it's recovering her legs could be weaker or even paralyzed, for a period of weeks to a month or more. So we all should prepare ourselves for that possibility.
It's also possible that there will be some permanent deficits, but those are more likely to be sensory rather than motor, so PT will involve not so much learning to walk, but rather, learning how to walk without tripping over numb feet.
The PT person advised that when [Loopy] first comes home she should not try to go up and down stairs, so we will be setting up the upstairs of our house so she can basically live there. (We have considered and rejected the main level and the basement for various reasons, primarily that she wants to sleep in her own bed). We hope that visitors will be willing to trek out here, since she will undoubtedly start to get a little stir crazy in the winter months!
(With all that in mind I am trying very hard to take the advice of people who are urging me to rest a lot now, because I will be working hard once she comes home. It's hard to let go of wanting to take care of her myself all the time, but I'm doing my best - sleeping at home tonight, for example.)
So overall, there is a balance of promising and disappointing information. On the "plus" side, the long-term prognosis is very good, as I described yesterday, and very importantly, the pain should be gone immediately as soon as the tumor is removed (there will be pain from the surgery itself, but that should not be anywhere near as bad as what she's been going through). On the other hand, recovery will be a slow process and a lot of hard work.
The other thing I think I described in yesterday's deleted mail is that the surgeon, Dr. K___, is the top tumor neurosurgeon at the UW hospitals. He has his BA and MD from Harvard, a PhD from MIT, and spent a number of years teaching at USC; he's now the head of the brain tumor program at the UW and a prof of neurosurgery. (He also was a pre-med tutor in Lowell House when we were there! He actually looks pretty familiar, which is slightly odd but also irrationally comforting).
And I'll close on a humorous note... here in smallish-town midwest, nobody can pronounce the name "Dr. K____" [Chinese surname]. He has been referred to as "Dr. Cow" and "Dr. Coo," for example. For a while we actually thought that [Loopy] had two doctors named Dr. [real name] and Dr. Cow, but that highly amusing situation did not turn out to be the case.
[Loopy] greatly appreciates calls and visits. Don't be surprised to find her a bit groggy, but otherwise she's generally in fine spirits.
Love to all
[me]
First, a clarification: [Loopy] is staying in the hospital for another week at least. She is not moving to rehab tomorrow (today) but rather, *next* Monday, four days after the surgery.
And, minor news: a bed opened in the neurology unit so [Loopy] has been moved (she was parked in cardiac over the weekend); the new room number is ____, but I don't know if there's any point in trying to keep up with the numbers, since she'll be in one to two more different beds after the surgery. The room is slightly smaller but laid out better (i.e., you don't have to move every single piece of furniture in order to allow a person with walker and IV to get from the bathroom to the sink). Plus, [Loopy] says it's less tiring to not have to walk so far [to the bathroom and sink], so that's good.
People have asked how I'm holding up (thank you for your kind support!) Well, I had a bit of a meltdown yesterday (Sat) because the surgeon listed all the terrible things that could possibly go wrong and it was just a bit overwhelming; this morning, we pressed him for estimates of the likelihood of each of these terrible things and were reassured that all of them are pretty unlikely, so I've regained some semblance of rationality. :-)
The only negative thing that's likely post-surgery is a continuation--and perhaps temporary worsening--of her current problems with using and feeling her legs, to be addressed by lots o' PT. During the surgery they have to manipulate the spinal cord somewhat and it can become bruised, and while it's recovering her legs could be weaker or even paralyzed, for a period of weeks to a month or more. So we all should prepare ourselves for that possibility.
It's also possible that there will be some permanent deficits, but those are more likely to be sensory rather than motor, so PT will involve not so much learning to walk, but rather, learning how to walk without tripping over numb feet.
The PT person advised that when [Loopy] first comes home she should not try to go up and down stairs, so we will be setting up the upstairs of our house so she can basically live there. (We have considered and rejected the main level and the basement for various reasons, primarily that she wants to sleep in her own bed). We hope that visitors will be willing to trek out here, since she will undoubtedly start to get a little stir crazy in the winter months!
(With all that in mind I am trying very hard to take the advice of people who are urging me to rest a lot now, because I will be working hard once she comes home. It's hard to let go of wanting to take care of her myself all the time, but I'm doing my best - sleeping at home tonight, for example.)
So overall, there is a balance of promising and disappointing information. On the "plus" side, the long-term prognosis is very good, as I described yesterday, and very importantly, the pain should be gone immediately as soon as the tumor is removed (there will be pain from the surgery itself, but that should not be anywhere near as bad as what she's been going through). On the other hand, recovery will be a slow process and a lot of hard work.
The other thing I think I described in yesterday's deleted mail is that the surgeon, Dr. K___, is the top tumor neurosurgeon at the UW hospitals. He has his BA and MD from Harvard, a PhD from MIT, and spent a number of years teaching at USC; he's now the head of the brain tumor program at the UW and a prof of neurosurgery. (He also was a pre-med tutor in Lowell House when we were there! He actually looks pretty familiar, which is slightly odd but also irrationally comforting).
And I'll close on a humorous note... here in smallish-town midwest, nobody can pronounce the name "Dr. K____" [Chinese surname]. He has been referred to as "Dr. Cow" and "Dr. Coo," for example. For a while we actually thought that [Loopy] had two doctors named Dr. [real name] and Dr. Cow, but that highly amusing situation did not turn out to be the case.
[Loopy] greatly appreciates calls and visits. Don't be surprised to find her a bit groggy, but otherwise she's generally in fine spirits.
Love to all
[me]
Saturday, October 28, 2006
email update: geting into the hospital... another story
an email sent late that night, from the hospital:
I hurriedly sent out an email earlier that went to a somewhat haphazard assortment of people, so I'll repeat myself a little for those who were accidentally omitted.
This morning we called [Loopy]'s primary care person because the pain was really bad, and since this is the third such call this week, she advised us that we really should just go to the ER and try to get her admitted to the hospital for proper pain control. We called the neurosurgeon's office and the nurse there said the same thing, so we packed and came in.
As we were packing I noticed that [Loopy] has gotten more wobbly and unsteady, and I think both of us have had a growing fear that she would fall again and really hurt herself (heaven forbid she should fall down the stairs!) or fall and not be able to get back up, and even tho she's lost more than 100 pounds in the last year, I still can't lift her! Seeing her wobbling, I became more determined to get her admitted.
The ER was a bit of an ordeal as it always is, but we persevered and insisted that she was not safe or comfortable at home. At our lowest moment I called a friend who quickly brought a wonderful dinner and absorbing gossip (thank you thank you!), and who I felt could help back us up if it really came to a fight to get her in. Fortunately, shortly after she was finally admitted to the hospital.
Now she is safely in a very nice room, private even, with wonderful nurses and a morphine pump. The pain is not bad but not totally controlled either, but they're working on it, and she doesn't have to go up and down stairs, and we both feel a lot safer and relieved of a lot of worry.
Also, in the ER we were able to talk to a resident who works with the neurosurgeon who will do [Loopy]’s surgery, and he said the surgeon said they will try to get the surgery scheduled for this week so she can just stay here until the surgery. That would be ideal.
For local folks or anyone sending anything, she's in [room number] at [hospital] - you enter in the clinics entrance from the parking garage, find the D elevator, go up to the fifth floor, and she's just a few steps from the elevator. She has a phone in her room but our cell phones work fine so just use those—[number] for me and [number] for her.
Thanks so much for all your good wishes earlier. I felt a bit desperate and panicked but now I feel much better and I think [Loopy] does too.
Will keep you posted. THere are just a few of you on this list that didn't ask to be kept posted, that I think might not have seen the message yet, but I'll drop you off the detailed updates if I don't hear otherwise, so don't worry that you'll be inundated.
Also I have gotten behind on thanking each person individually for their messages but please rest assured that your words are SO appreciated.
Love to all
[me]
I hurriedly sent out an email earlier that went to a somewhat haphazard assortment of people, so I'll repeat myself a little for those who were accidentally omitted.
This morning we called [Loopy]'s primary care person because the pain was really bad, and since this is the third such call this week, she advised us that we really should just go to the ER and try to get her admitted to the hospital for proper pain control. We called the neurosurgeon's office and the nurse there said the same thing, so we packed and came in.
As we were packing I noticed that [Loopy] has gotten more wobbly and unsteady, and I think both of us have had a growing fear that she would fall again and really hurt herself (heaven forbid she should fall down the stairs!) or fall and not be able to get back up, and even tho she's lost more than 100 pounds in the last year, I still can't lift her! Seeing her wobbling, I became more determined to get her admitted.
The ER was a bit of an ordeal as it always is, but we persevered and insisted that she was not safe or comfortable at home. At our lowest moment I called a friend who quickly brought a wonderful dinner and absorbing gossip (thank you thank you!), and who I felt could help back us up if it really came to a fight to get her in. Fortunately, shortly after she was finally admitted to the hospital.
Now she is safely in a very nice room, private even, with wonderful nurses and a morphine pump. The pain is not bad but not totally controlled either, but they're working on it, and she doesn't have to go up and down stairs, and we both feel a lot safer and relieved of a lot of worry.
Also, in the ER we were able to talk to a resident who works with the neurosurgeon who will do [Loopy]’s surgery, and he said the surgeon said they will try to get the surgery scheduled for this week so she can just stay here until the surgery. That would be ideal.
For local folks or anyone sending anything, she's in [room number] at [hospital] - you enter in the clinics entrance from the parking garage, find the D elevator, go up to the fifth floor, and she's just a few steps from the elevator. She has a phone in her room but our cell phones work fine so just use those—[number] for me and [number] for her.
Thanks so much for all your good wishes earlier. I felt a bit desperate and panicked but now I feel much better and I think [Loopy] does too.
Will keep you posted. THere are just a few of you on this list that didn't ask to be kept posted, that I think might not have seen the message yet, but I'll drop you off the detailed updates if I don't hear otherwise, so don't worry that you'll be inundated.
Also I have gotten behind on thanking each person individually for their messages but please rest assured that your words are SO appreciated.
Love to all
[me]
Friday, October 27, 2006
email update: leaving for the hospital
two years later, i'm going back and weaving the emails i sent to family and friends into the story. emails (all added later) will be marked as such; blog posts written at the time, will appear as they always did, with no special marker. this way i'll have a full record in one place...
here's the email I sent to people as we left the house:
taking [Loopy] to the ER on the advice of her doctors, as we can't control the pain and the other symptoms are worsening. they may send her home but anyway, all contributions are welcome, as [Amerina's mother] would say--prayers, white light, positive thoughts... well... no animal sacrifices please but anything else... :-) will let local folks know
as more concrete needs arise.
thanks for being there, this is really a nightmare.
love
[me]
Tuesday, February 14, 2006
several feelings later...
So, Dad's surgery went fine. There really wasn't any worry about the surgery, actually. What I was dreading was the sitting in the hospital for hours.
You know, to reassure him when he doesn't understand what's going on, and fix his pillows and give him water and stop him from taking his oxygen tube off and get the nurse to help him pee in a bottle....
...all those hospitally activities that simultaneously produce boredom and anxiety, my least favorite combo.
So..........I read a couple more chapters of Finding Serenity (the book about Firefly that Loopy gave me for xmas, bless her a thousand times).
I also read a couple chapters of some Thich Nhat Hanh book but I couldn't get into it.
Played both the games on my old iPod.
Read some newspapers lying around.
(Now what time is it? Jesus, only ten minutes since the last time I looked at the clock?).
You get the picture.
I heard once that Freud said boredom is anxiety. I have no idea what he's talking about.
Well, it's over with for today & he's coming home tomorrow (Dad, not Freud). And I'm going home on Wednesday. Not a moment too soon. *sigh* I foresee a lot more of this in the future.
Oh well. That's life.
You know, to reassure him when he doesn't understand what's going on, and fix his pillows and give him water and stop him from taking his oxygen tube off and get the nurse to help him pee in a bottle....
...all those hospitally activities that simultaneously produce boredom and anxiety, my least favorite combo.
So..........I read a couple more chapters of Finding Serenity (the book about Firefly that Loopy gave me for xmas, bless her a thousand times).
I also read a couple chapters of some Thich Nhat Hanh book but I couldn't get into it.
Played both the games on my old iPod.
Read some newspapers lying around.
(Now what time is it? Jesus, only ten minutes since the last time I looked at the clock?).
You get the picture.
I heard once that Freud said boredom is anxiety. I have no idea what he's talking about.
Well, it's over with for today & he's coming home tomorrow (Dad, not Freud). And I'm going home on Wednesday. Not a moment too soon. *sigh* I foresee a lot more of this in the future.
Oh well. That's life.
Monday, June 27, 2005
god again
Thought about the previous post some more. I was irritated when I wrote it, but really, it was the same irritation I have about any issue where people just assume that everyone's the same (& *should* be the same), or else that there are "two sides" of an issue and the "bad" side is just a caricature. Christmas and elections bring out the same irritation in me.
Also, the reason I've tried to stop being an asshole--well, it isn't really what I said. More that I've been trying to become more open and flexible, gentle and tolerant, etc. The Buddhist stuff I've been studying teaches that basically it's rigidity and defensiveness that make us suffer and also make us hurt other people. When I define & defend my own “identity,” I have to define other people to define myself, which gets me tangled up in judgement and all these binary pigeonholes (smart/stupid, nice/mean, good/bad) that I just use to hurt myself and others. But the more I can relax and open, the more I can begin to see that everyone, myself included, is much more than these binaries. The world becomes a much more complex and interesting place.
To illustrate. We were early to the funeral people kept asking about Mom & I told them she was having surgery right then. I was a bit distracted and weird, and Mom's friends saw this and were so kind to me. When at one point I actually started to cry, one of them took my hand and said, “let's pray for her right now...Dear God, be with the surgeon and the anesthesiologist...” and she went through and described the operating room and the people in it and asked God to be with each of them and help them to be peaceful and focused and skilled. (She's a nurse so she could visualize this easily).
Well, the funny thing was that as I imagined all of this with her--imagined each of the people and imagined a peace coming over them, even though I didn't really think we were talking to anyone--the knot in my chest seemed to dissolve. I stopped trying NOT to think of the surgery and just became more present with what was happening and how I felt. I cried more, but I felt more peaceful. She said “Amen,” I said “Amen,” and then “thank you.”
So if I had been an asshole and refused her kindness, on the basis of a wholesale rejection of religion as “not my identity,” then I not only would have hurt her, I would have missed out on something that actually helped me feel better. She knew I would feel better. I just happen to think I felt better because I relaxed and accepted the situation and my feelings about it. She can think that God helped me, and if that makes her happy, that's a good thing, right?
Well, another part of my brain says, “no, it's not--religion is a problem precisely because it makes people rigid and defensive and unable to accept flexibility.” Well. That might be true too. But, it would be inflexible of me to define it that way.
Now my poor brain is tied in a knot.
I have to go eat supper anyway. At lunch Mom made me eat bread out of a can and crappy baked beans, and now she's going to make us eat this special ham that she's convinced we absolutely must try because it's so special. I'm deeply, deeply afraid. I'll let you know how it goes. Oh, and as if this isn't enough misery, later we will be forced to watch a video all about the American flag, that some right-wing group sent Dad in the mail. Is there some way to self-induce a coma that is imperceptible to others?
Damn, I guess I'm being inflexible again. Oops, there's supper.
Also, the reason I've tried to stop being an asshole--well, it isn't really what I said. More that I've been trying to become more open and flexible, gentle and tolerant, etc. The Buddhist stuff I've been studying teaches that basically it's rigidity and defensiveness that make us suffer and also make us hurt other people. When I define & defend my own “identity,” I have to define other people to define myself, which gets me tangled up in judgement and all these binary pigeonholes (smart/stupid, nice/mean, good/bad) that I just use to hurt myself and others. But the more I can relax and open, the more I can begin to see that everyone, myself included, is much more than these binaries. The world becomes a much more complex and interesting place.
To illustrate. We were early to the funeral people kept asking about Mom & I told them she was having surgery right then. I was a bit distracted and weird, and Mom's friends saw this and were so kind to me. When at one point I actually started to cry, one of them took my hand and said, “let's pray for her right now...Dear God, be with the surgeon and the anesthesiologist...” and she went through and described the operating room and the people in it and asked God to be with each of them and help them to be peaceful and focused and skilled. (She's a nurse so she could visualize this easily).
Well, the funny thing was that as I imagined all of this with her--imagined each of the people and imagined a peace coming over them, even though I didn't really think we were talking to anyone--the knot in my chest seemed to dissolve. I stopped trying NOT to think of the surgery and just became more present with what was happening and how I felt. I cried more, but I felt more peaceful. She said “Amen,” I said “Amen,” and then “thank you.”
So if I had been an asshole and refused her kindness, on the basis of a wholesale rejection of religion as “not my identity,” then I not only would have hurt her, I would have missed out on something that actually helped me feel better. She knew I would feel better. I just happen to think I felt better because I relaxed and accepted the situation and my feelings about it. She can think that God helped me, and if that makes her happy, that's a good thing, right?
Well, another part of my brain says, “no, it's not--religion is a problem precisely because it makes people rigid and defensive and unable to accept flexibility.” Well. That might be true too. But, it would be inflexible of me to define it that way.
Now my poor brain is tied in a knot.
I have to go eat supper anyway. At lunch Mom made me eat bread out of a can and crappy baked beans, and now she's going to make us eat this special ham that she's convinced we absolutely must try because it's so special. I'm deeply, deeply afraid. I'll let you know how it goes. Oh, and as if this isn't enough misery, later we will be forced to watch a video all about the American flag, that some right-wing group sent Dad in the mail. Is there some way to self-induce a coma that is imperceptible to others?
Damn, I guess I'm being inflexible again. Oops, there's supper.
Sunday, June 26, 2005
god
[warning: material may be offensive to some readers. comments blasting me to hell and damnation will be deleted, unless they're really funny]
Handy tip: If you want a LOT of people to tell you to pray every day, you can either (1) attend a religious revival or (2) put your Mom in the hospital for surgery.
Sheesh. I don't think I've ever been so frequently exhorted to relgious activity outside a location where my presence announces my willingness to engage therein (i.e. a church). Of course I expect it from my mom's friends, but now everyone—from the cafeteria worker at the hospital to the lady who delivered flowers—is telling me to pray. And what do you say to that? "No thanks"? "Mango chutney"?
But one thing always stops me from doing this (though it obviously doesn't stop them): fear of being an asshole.
But then, at the funeral on Friday, there was just such an asshole at the reception, and it was great. We had slogged through the Mass* led by an Irish priest with a strong accent, which allowed me some private moments of amusement ("caught up in the Lord" pronounced as "cut up in the Lard"). At the reception, I dutifully commented that "It was a nice service, wasn't it?"
"Oh yeah. Great that the priest had an Irish accent. That was really essential," said the asshole.
"Really completes the whole atmosphere, eh?" I said and we smirked at each other. Nobody else was at all amused. But it was a little moment of reality that helped me stay sane. So who knows. Maybe if I were more of an asshole, I'd be helping others stay sane. They do, after all, have nothing to lose but their chains.**
This reminds me of Franklin's recent reference to my difficulties with "suffering fools gladly," and I have been contemplating a post confessing my past sins in that department, and defending myself that I'm not like that anymore. Even though maybe I am a little. But the past sins are funny. But I'll save that for another time.
Handy tip: If you want a LOT of people to tell you to pray every day, you can either (1) attend a religious revival or (2) put your Mom in the hospital for surgery.
Sheesh. I don't think I've ever been so frequently exhorted to relgious activity outside a location where my presence announces my willingness to engage therein (i.e. a church). Of course I expect it from my mom's friends, but now everyone—from the cafeteria worker at the hospital to the lady who delivered flowers—is telling me to pray. And what do you say to that? "No thanks"? "Mango chutney"?
 | I mean, I don't exhort random strangers to "keep up the fight for the glorious revolution." Maybe I should start doing that. |  |
But one thing always stops me from doing this (though it obviously doesn't stop them): fear of being an asshole.
But then, at the funeral on Friday, there was just such an asshole at the reception, and it was great. We had slogged through the Mass* led by an Irish priest with a strong accent, which allowed me some private moments of amusement ("caught up in the Lord" pronounced as "cut up in the Lard"). At the reception, I dutifully commented that "It was a nice service, wasn't it?"
"Oh yeah. Great that the priest had an Irish accent. That was really essential," said the asshole.
"Really completes the whole atmosphere, eh?" I said and we smirked at each other. Nobody else was at all amused. But it was a little moment of reality that helped me stay sane. So who knows. Maybe if I were more of an asshole, I'd be helping others stay sane. They do, after all, have nothing to lose but their chains.**
This reminds me of Franklin's recent reference to my difficulties with "suffering fools gladly," and I have been contemplating a post confessing my past sins in that department, and defending myself that I'm not like that anymore. Even though maybe I am a little. But the past sins are funny. But I'll save that for another time.
*including a bible passage informed us that God had tortured the deceased with heart disease just to see if he would really stay faithful, and only after that was he allowed into heaven (1 Peter 1:6-9). What kind of sadistic, fucked-up god is this, anyway????
** Our local bookstore cooperative tried to put its new ad campaign on the local public radio station, but it was completely bowdlerized, because apparently the FCC would object to (among other things) the slogan: "Patronize independent bookstores: you have nothing to lose but your chains."
One wonders (I did anyway) whether (1) the objection was to quoting the Communist Manifesto, per se, in which case, that doesn't really seem Constitutional—not that I am under any illusion about the strength of that document these days; or (2) the person doing the censoring didn't recognize the quote and just feared FCC objection to the implication that chain stores were bad.
I don't know which interpretation is less appealing: draconian censorship or devastating ignorance. The surrounding text suggested the latter.
Maybe I do need to start randomly preaching socialism at complete strangers.
Thursday, June 23, 2005
surreal
So, here we are in extremely sunny AZ. Loopy & I both feel like we've been run over by an oven. Mom has surgery tomorrow to align her neck vertebrae. It seems to be pretty straightforward surgery, no likely complications etc., although the neck is of course a vulnerable area & anything's possible. Anyway, drama queen that she is, she seems to be convinced that she's going to die, and at the same time, determined to be brave for the family.
So she alternates between assuring us all that this is no big deal, and then having "slips of the tongue" like "if I come home from the hospital" (instead of "when"). I probably have a lot of mixed feelings about this but I'm not really letting it in that much at the moment. I'm just sorta like, ok, let's just get through this. I'm more worried that Dad is going to have a stroke while I'm alone with him in the apartment.
So anyway, I just put a CD of my grandmother's favorite hymns on the CD player. Mom had it put together by a musician friend from old recordings, including ones from Mom's sister's and brother's and of course mother's funerals (starting with "O Death Where Is Thy Sting," etc.). They're all sung by dear friends from the past, etc. It's freaking me out a little that I'm so detached about this. I just feel like I'm doing "my job," including doing stuff that Mom might find comforting. I'm like, "oh, good, she's crying and saying random things about what a wonderful life she's had, so that was a good thing to do." But I don't really feel much right now. I'm not even in the same room with her (literally).
But then that's the thing with her. She doesn't connect anyway. So what's the point of me getting emotional. She wouldn't find that comforting, just anxiety-producing, because she'd know she was supposed to respond to me somehow and wouldn't be sure what was the right response. But the CD, that's just right.
This is just really weird.
Did I mention that while she's having surgery, Dad & I have to go to a funeral of one of his best friends? He's a pallbearer.
That's what really puts it over the top into surreal weird freakiness.
Tune in later for more dispatches from surreality....
Subscribe to:
Posts (Atom)
