Did you read the blurb in TIME magazine about the study being done about how clean scents can induce people to behave virtuously and bad smells can make people behave cruddy? Apparently clean scents can help regulate better, ethical behavior. A room sprayed with Windex and citrus-scents had people acting more charitably than people in an unscented room.
On the other end of the spectrum (errr---), people unfortunate enough to be exposed to a fart-scented spray (how the hell did they go about bottling that ?!) acted more critical and judgmental about certain moral issues. (Big surprise here).
This isn't a big discovery (though I'm sure they spent millions in grant money on the study)....all the realtors who say to have cookies baking in an oven, or mulled cider, or pumpkin in the air when people tour your house have been on to this for years.....I guess I will try to bottle some of the scent when we've been 'skunked' out on the terrace to release when guests come over and won't leave....
Saturday, November 28, 2009
Wednesday, November 25, 2009
Stonehenge on the Terrace
Excy's converting the therapy pool from running exclusively on propane to a combination of fuel and electricity, and it involves all manner of complicated pipes, tubing, motors, and gadgets he's spent months tracking down in stores and on the internet and then building and assembling.
He took me into the 'engine room/pump house' or whatever the room with all the equipment is in is called, and tried explaining it to me, but my coherent husband suddenly began speaking in tongues or Swahili, so all I could do was nod meaningfully and say "wow" until he stopped speaking. I was impressed, of course, which was the point and all he hoped for, and the end result will be a hot pool again, which is all I hope for. So, as Gary Cooper's 'sheriff' says to his new 'bride' Grace Kelly in High Noon, "that's the whole thing." More info than that on the subject and my eyes glaze. Fortunately Excy knows this.
At one point he had to solder some pipes and set up a few cinder bricks stacked on the terrace to the height he needed and they're still there a week later. Excy being Excy, this could mean he's not finished, or it could mean he's wandered off and left them on permanent display until I gently bitch them off to some unprominent spot. Hosting Thanksgiving tomorrow means this will happen today. (Mostly my nudging means things happen eventually, the general rule of thumb being three weeks after my reminders).
Any hoo -- the first night the bricks were on the terrace, I threw the dog food out for the 'coons and critters as usual when it grew dark and didn't think anything about it until later when I was walking down the hall to the bedroom. The corridor is glass so I always glance out to see if we have any 'customers' on the terrace and if they need more food. Three coons were clustered around the blocks, sort of scratching their heads and ohhing and ahhing, and touching the bricks. It reminded me of that scene in the movie 2001 where the apes are admiring the monolith. (Anyone want to explain that movie to me? Oh forget it - I don't really care). At one point in the evening, several more 'coons were examining the bricks and a few others appeared genuinely concerned and in consultation off to the side. By the end of the night I would not have been surprised to see choice offerings laid at the foot of the brick or to see the 'coons in makeshift shriner's hats worshiping in some pagan rite.
Everything's calmed down as the week's gone by, and even the skunks (notoriously timid and shy) shuffle by unconcernedly now.
He took me into the 'engine room/pump house' or whatever the room with all the equipment is in is called, and tried explaining it to me, but my coherent husband suddenly began speaking in tongues or Swahili, so all I could do was nod meaningfully and say "wow" until he stopped speaking. I was impressed, of course, which was the point and all he hoped for, and the end result will be a hot pool again, which is all I hope for. So, as Gary Cooper's 'sheriff' says to his new 'bride' Grace Kelly in High Noon, "that's the whole thing." More info than that on the subject and my eyes glaze. Fortunately Excy knows this.
At one point he had to solder some pipes and set up a few cinder bricks stacked on the terrace to the height he needed and they're still there a week later. Excy being Excy, this could mean he's not finished, or it could mean he's wandered off and left them on permanent display until I gently bitch them off to some unprominent spot. Hosting Thanksgiving tomorrow means this will happen today. (Mostly my nudging means things happen eventually, the general rule of thumb being three weeks after my reminders).
Any hoo -- the first night the bricks were on the terrace, I threw the dog food out for the 'coons and critters as usual when it grew dark and didn't think anything about it until later when I was walking down the hall to the bedroom. The corridor is glass so I always glance out to see if we have any 'customers' on the terrace and if they need more food. Three coons were clustered around the blocks, sort of scratching their heads and ohhing and ahhing, and touching the bricks. It reminded me of that scene in the movie 2001 where the apes are admiring the monolith. (Anyone want to explain that movie to me? Oh forget it - I don't really care). At one point in the evening, several more 'coons were examining the bricks and a few others appeared genuinely concerned and in consultation off to the side. By the end of the night I would not have been surprised to see choice offerings laid at the foot of the brick or to see the 'coons in makeshift shriner's hats worshiping in some pagan rite.
Everything's calmed down as the week's gone by, and even the skunks (notoriously timid and shy) shuffle by unconcernedly now.
Cool.....
Just logged on and noticed I have 92 posts and 92 followers...cool! Thanks for reading. Happy Thanksgiving to all!
Saturday, November 21, 2009
I am...The Joker!
I was trolling Dillards last week in my continuing quest to find the perfect shade of red lipstick when my new BF came up to me and said, "Okay, I'm just gonna blurt it out here - your look? Your coloring? It's working for you..." I mean, how could you not love this man?? I wanted to hijack him and take him shopping with me immediately. He was in town from NYC setting up the new Keihl's counter, for which my real BF is now in charge of. (Oh, and by the way? Cameos are totally 'in' this spring. So bring on Granny's brooch).
I had just returned the disastrous Estee Lauder "12 hour" red lipstick I had bought weeks before. I had put in on, taken a sip of tea, and found all of it on the mug. I made a few more stabs at it, but it would either feather or end up on my teeth. Grrrr.
When I got to the counter, the lady there said, "Really? I have to remove it at the end of the day with a makeup remover!" Knowing she was lying through her teeth I dispensed with my usual show of Southern graciousness and said, "Good for you! Return, please." She asked if I wanted to try a different color. God help me.
On Mr. Congeniality's recommendation, I tried the Giorgio Armani counter, where I met a wonderful French woman. The lipsticks were so new, samples weren't even out yet -- thus not stolen...I requested the shades of red that went with my shade of coloring and we decided on two. I selected one to try on, and she insisted she put in on me herself. I reluctantly and awkwardly climbed up on those high chairs they force adult women into (which aren't, incidentally, convenient for the disabled). She made a show of lining my Clara Bow and filled it in with the stick and flourished a hand mirror before me.
Have you ever wanted to wipe off product immediately upon seeing it? I choked back a laugh. Seriously? That's what you think my lips look like? They were twice their normal size -- I looked like Goldie Hawn in The First Wife's Club. Duck lips. Clown face. This child had never colored between the lines. I wanted to wipe most of it away but did not want to hurt her feelings. People were watching. (Hopefully in sympathy, but maybe they were just mildly curious to see how I'd react). The color, however, was great, so I promised her this was a test drive and if it lived up to the claims I'd be back to pick it up - she assured me it had so much staying power it'd last until dinner (this was mid-afternoon).
I decided to stretch my lips as wide as I could in a grin until I got to the car to make adjustments as best I could. Several people commented on my lip color as I made my way through the store, which made me sweat a bit. Once in the car I whipped out the kleenex and went to work. Dang! It really did have staying power....
After the grocery I headed home. When he saw me, Excy cocked his head and stared at my face several long seconds and then announced that I looked like The Joker from Batman and it was creeping him out.
He didn't even want me to wait until I had put away the groceries.
Product: Giorgio Armani
Red #400 Liner #4
Wears great, feels wonderful.
Did go back to buy it
I had just returned the disastrous Estee Lauder "12 hour" red lipstick I had bought weeks before. I had put in on, taken a sip of tea, and found all of it on the mug. I made a few more stabs at it, but it would either feather or end up on my teeth. Grrrr.
When I got to the counter, the lady there said, "Really? I have to remove it at the end of the day with a makeup remover!" Knowing she was lying through her teeth I dispensed with my usual show of Southern graciousness and said, "Good for you! Return, please." She asked if I wanted to try a different color. God help me.
On Mr. Congeniality's recommendation, I tried the Giorgio Armani counter, where I met a wonderful French woman. The lipsticks were so new, samples weren't even out yet -- thus not stolen...I requested the shades of red that went with my shade of coloring and we decided on two. I selected one to try on, and she insisted she put in on me herself. I reluctantly and awkwardly climbed up on those high chairs they force adult women into (which aren't, incidentally, convenient for the disabled). She made a show of lining my Clara Bow and filled it in with the stick and flourished a hand mirror before me.
Have you ever wanted to wipe off product immediately upon seeing it? I choked back a laugh. Seriously? That's what you think my lips look like? They were twice their normal size -- I looked like Goldie Hawn in The First Wife's Club. Duck lips. Clown face. This child had never colored between the lines. I wanted to wipe most of it away but did not want to hurt her feelings. People were watching. (Hopefully in sympathy, but maybe they were just mildly curious to see how I'd react). The color, however, was great, so I promised her this was a test drive and if it lived up to the claims I'd be back to pick it up - she assured me it had so much staying power it'd last until dinner (this was mid-afternoon).
I decided to stretch my lips as wide as I could in a grin until I got to the car to make adjustments as best I could. Several people commented on my lip color as I made my way through the store, which made me sweat a bit. Once in the car I whipped out the kleenex and went to work. Dang! It really did have staying power....
After the grocery I headed home. When he saw me, Excy cocked his head and stared at my face several long seconds and then announced that I looked like The Joker from Batman and it was creeping him out.
He didn't even want me to wait until I had put away the groceries.
Product: Giorgio Armani
Red #400 Liner #4
Wears great, feels wonderful.
Did go back to buy it
Friday, November 20, 2009
Seven Things.....
I was supposed to tell 7 things about myself when I picked up the flower bouquet the other day and it was a hellish week so I am just now responding.....hopefully to be back in action again......
1) I love to eat and think that if I wore a burka I would quickly gain 20 more lbs. Getting to hide behind all that fabric? I'd totally go for it. That's one reason sweat pants are dangerous. Too much room for growth...
2) When I was a kid I had a 'Lauren Hutton' gap I could spit water through and b/c of it I could also whistle in class without ever being found out. I got braces (for it and an overbite) but probably wouldn't have bothered as I got older...
3) I am a lone wolf and require some 'down time' every day to be alone and recharge my batteries...
4) I have a phone phobia -- hate to talk on the phone -- unless it's LD or I haven't talked with the caller in awhile. It's not bad once I actually answer -- which I never do, drives Excy crazy, since he fields calls (hey, just let the 'electronic butler' do it but a ringing phone is his kryptomite) -- my cell phone is kept in the car for emergencies or last-minute calls and I have to look up the number for people if they need to call, I use it so seldom...
5) My guilty pleasure for crap food are those Hostess cupcakes with the chocolate frosting and white icing. I have to avert my eyes when I pass them in the store...and for some reason, when we make road trips, I require cherry flavored Blow Pops, though I spit them out as soon as the flavor is gone...
6) I'm a snob about people using a toothpick - just hate it. So I carry dental floss in the car and my purse...
7) Dogs make me nervous. Can they read my thoughts that I don't much care for them? My grandmom's dog bit me when I was five and I guess ever since then, making dog friends is an effort...
1) I love to eat and think that if I wore a burka I would quickly gain 20 more lbs. Getting to hide behind all that fabric? I'd totally go for it. That's one reason sweat pants are dangerous. Too much room for growth...
2) When I was a kid I had a 'Lauren Hutton' gap I could spit water through and b/c of it I could also whistle in class without ever being found out. I got braces (for it and an overbite) but probably wouldn't have bothered as I got older...
3) I am a lone wolf and require some 'down time' every day to be alone and recharge my batteries...
4) I have a phone phobia -- hate to talk on the phone -- unless it's LD or I haven't talked with the caller in awhile. It's not bad once I actually answer -- which I never do, drives Excy crazy, since he fields calls (hey, just let the 'electronic butler' do it but a ringing phone is his kryptomite) -- my cell phone is kept in the car for emergencies or last-minute calls and I have to look up the number for people if they need to call, I use it so seldom...
5) My guilty pleasure for crap food are those Hostess cupcakes with the chocolate frosting and white icing. I have to avert my eyes when I pass them in the store...and for some reason, when we make road trips, I require cherry flavored Blow Pops, though I spit them out as soon as the flavor is gone...
6) I'm a snob about people using a toothpick - just hate it. So I carry dental floss in the car and my purse...
7) Dogs make me nervous. Can they read my thoughts that I don't much care for them? My grandmom's dog bit me when I was five and I guess ever since then, making dog friends is an effort...
Wednesday, November 18, 2009
How Typical is It...
that the street you need to turn on isn't marked
the only dollar bill you have isn't accepted by the vending machine and there isn't a change machine
the store you go to specifically for a certain item won't have it or will be out of it
the phone will ring as you sit down to dinner
the power will go out just before the climax of the movie
you smiled at the word 'climax'
you believe the claims of a 12-hour lipstick even when you know better
the only dollar bill you have isn't accepted by the vending machine and there isn't a change machine
the store you go to specifically for a certain item won't have it or will be out of it
the phone will ring as you sit down to dinner
the power will go out just before the climax of the movie
you smiled at the word 'climax'
you believe the claims of a 12-hour lipstick even when you know better
Monday, November 16, 2009
The Game Plan
Holy crow -- are you as glad this medical posting is coming to an end as I am writing it?? Reliving it has been rather a slog this week. It takes so long just to tell the highlights of 'the story,' and while it is cathartic and hopefully helpful, as I've said before, I don't dwell on it but just -- move on....
I want to thank all you readers for sticking with me through these posts, and for your generous and touching comments. It is a privilege getting to 'know' you all. This blogging thing has been an amazing journey from the start....it's so interesting to read glimpses into so many individual lives -- all unique - the one constant is my feeling that you are all so thoughtful, and open-hearted and generous. Thank you. Your support is a blessing. You are all wonderful.
Tomorrow I get an X-ray of my neck for Dr. Cutie (he has been pleased with the healing so far), and an H1N1 shot. I have debated and resisted this, but Excy wouldn't drop it. Finally after em-ing NIH and Emory drs. who both said I should get one, I am. My acupuncturist advised against it; felt it was a bit overblown and if I did get sick he would be able to handle it, but my drs said even a bad cold could shut down 'the kid' and they felt the precaution was worth any side-effect from the 'cure.' Blah.
In late Jan. or early Feb. we're off to NIH for another round of tests and will be able to gauge how the tumor on 'the kid' is growing. So far, the ones on the cerebellum and spine aren't changing (they can grow very slowly and often it's the cysts that pop up that can cause the problems, as was the case with two of my brain surgeries).
Emory dr. this summer argued that we know the kidney tumor won't get any smaller, and we should just go ahead and operate while we know it hasn't spread and while we have a donor. NIH argued that the surgery to remove the 'kid' isn't without great risk since they've been in my abdomen four times and there's a lot of scar tissue, and the possibility of messing up the remaining pancreas is great, etc.al. Also, the longer I am on my own kidney power the longer I am living without the possibility of the transplant not working out....I thought long and hard about what both sides had to say. I confess I did land on the side of removing the kidney and getting on with it b/c if the tumor does metastasize it's game over, since these tumors when cancerous spread like wildfire and do not respond to chemo or radiation. Finally told them both the way I felt but that hey, I'm not the one with the medical degree, so they needed to consult with each other and their staff and research teams and come to a mutual decision. Which is how the NIH opinion won out.
When the inevitable does happen, the plan is to have the surgery at NIH, then come home for dialysis until pathology determines there is no spread and I recover, and then go to Emory with C. for the transplant. They have assured me that in the meantime, if a brain or spinal tumor begins to cause problems, surgery for it should cause no additional risk to the kidney. It didn't when I had surgery this spring.
C. is incredible. It goes without saying that she is my hero, but I will say it anyway. She is amazing to me. She is a WOW (see WOW post 9/21), a wife, a mother, and a grandmother. We aren't real close friends n the sense of talking a lot and hanging out b/c we are both busy and she works. We are WOW sisters in the sense we share some common interests and out looks on life and I have always felt an affinity for her. She decided on her own she wanted to do this, she did a lot of research, and she has never wavered in her decision. She and I felt from the first that it would work out, and she was the first person tested and has been a high match, which is in itself sort of incredible. I have one sibling but he declined to be tested as a donor. My parents have the own health issues, and the cut-off age for donors is 60 anyway. C. is a blessing in so many ways.
Finally after counseling and a year of passing all the tests she can have done in AR, the time came for us to send her to Emory. She just needed one more test, which they assured both of us was almost a formality at this point. So when Excy came in a few weeks afterwards and said Emory said she wasn't a match -- we were all stunned. C. didn't take the decision easily or at face value but argued to re-take it. At first they said 'no.' She waited and called the dept. head, who had been on vacation that week. She said okay, but it probably wouldn't change anything. C. re-took the test - and passed. They said it was probably a problem with the lab! In the meantime, two friends who had heard the news were trying to call the 800 number to get started on being tested. The hot line is supposed to respond within 24 hrs to anyone who calls. After days of calling and getting no feedback they called us about it, and when we em'd we learned they had issued cards with the wrong phone number. All this wasn't giving us warm fuzzies about getting transplanted there. And you just do not treat people that way. Particularly people facing these issues. We finally got the head dr., and the head of the program, and it got sorted out. C. went to Emory over the summer and was treated very well, as we have been whenever we've been there, and so far, we are all on board. A nonprofit account had to be set up for my transplant costs and meds, and the WOWs are chairing that. So, things are falling into place. Fingers are crossed.
When I have the transplant, I will have to live in Atlanta four weeks. Since we were going back and forth so often for the appts and then for the neck surgery, we joined the High Museum, and we have good friends who live on Peachtree we stay with some, and Atlanta is pretty fabulous to visit- so much to see and do. I know I will have the hardest time missing my animal kids! There is a house people can stay in while recovering from surgery or during treatment, just off the campus.
I am lucky beyond measure to have survived as long as I have, and to have found the surgeons who have kept me going. NIH has also been a god-send, and has enabled us to have some sort of semblance of a life out from under the constant financial stresses and pressures chronic illness can create. I'm blessed beyond measure, too, for the stead-fast support of family and so many friends. Finally, for Excy, who has seen me and taken care of me in ways one would never want to be seen and in situations one hopes never to be in, and somehow, miraculously, still loves me, wants to be with me, and finds me desirable and lovable. Incredible.
I want to thank all you readers for sticking with me through these posts, and for your generous and touching comments. It is a privilege getting to 'know' you all. This blogging thing has been an amazing journey from the start....it's so interesting to read glimpses into so many individual lives -- all unique - the one constant is my feeling that you are all so thoughtful, and open-hearted and generous. Thank you. Your support is a blessing. You are all wonderful.
Tomorrow I get an X-ray of my neck for Dr. Cutie (he has been pleased with the healing so far), and an H1N1 shot. I have debated and resisted this, but Excy wouldn't drop it. Finally after em-ing NIH and Emory drs. who both said I should get one, I am. My acupuncturist advised against it; felt it was a bit overblown and if I did get sick he would be able to handle it, but my drs said even a bad cold could shut down 'the kid' and they felt the precaution was worth any side-effect from the 'cure.' Blah.
In late Jan. or early Feb. we're off to NIH for another round of tests and will be able to gauge how the tumor on 'the kid' is growing. So far, the ones on the cerebellum and spine aren't changing (they can grow very slowly and often it's the cysts that pop up that can cause the problems, as was the case with two of my brain surgeries).
Emory dr. this summer argued that we know the kidney tumor won't get any smaller, and we should just go ahead and operate while we know it hasn't spread and while we have a donor. NIH argued that the surgery to remove the 'kid' isn't without great risk since they've been in my abdomen four times and there's a lot of scar tissue, and the possibility of messing up the remaining pancreas is great, etc.al. Also, the longer I am on my own kidney power the longer I am living without the possibility of the transplant not working out....I thought long and hard about what both sides had to say. I confess I did land on the side of removing the kidney and getting on with it b/c if the tumor does metastasize it's game over, since these tumors when cancerous spread like wildfire and do not respond to chemo or radiation. Finally told them both the way I felt but that hey, I'm not the one with the medical degree, so they needed to consult with each other and their staff and research teams and come to a mutual decision. Which is how the NIH opinion won out.
When the inevitable does happen, the plan is to have the surgery at NIH, then come home for dialysis until pathology determines there is no spread and I recover, and then go to Emory with C. for the transplant. They have assured me that in the meantime, if a brain or spinal tumor begins to cause problems, surgery for it should cause no additional risk to the kidney. It didn't when I had surgery this spring.
C. is incredible. It goes without saying that she is my hero, but I will say it anyway. She is amazing to me. She is a WOW (see WOW post 9/21), a wife, a mother, and a grandmother. We aren't real close friends n the sense of talking a lot and hanging out b/c we are both busy and she works. We are WOW sisters in the sense we share some common interests and out looks on life and I have always felt an affinity for her. She decided on her own she wanted to do this, she did a lot of research, and she has never wavered in her decision. She and I felt from the first that it would work out, and she was the first person tested and has been a high match, which is in itself sort of incredible. I have one sibling but he declined to be tested as a donor. My parents have the own health issues, and the cut-off age for donors is 60 anyway. C. is a blessing in so many ways.
Finally after counseling and a year of passing all the tests she can have done in AR, the time came for us to send her to Emory. She just needed one more test, which they assured both of us was almost a formality at this point. So when Excy came in a few weeks afterwards and said Emory said she wasn't a match -- we were all stunned. C. didn't take the decision easily or at face value but argued to re-take it. At first they said 'no.' She waited and called the dept. head, who had been on vacation that week. She said okay, but it probably wouldn't change anything. C. re-took the test - and passed. They said it was probably a problem with the lab! In the meantime, two friends who had heard the news were trying to call the 800 number to get started on being tested. The hot line is supposed to respond within 24 hrs to anyone who calls. After days of calling and getting no feedback they called us about it, and when we em'd we learned they had issued cards with the wrong phone number. All this wasn't giving us warm fuzzies about getting transplanted there. And you just do not treat people that way. Particularly people facing these issues. We finally got the head dr., and the head of the program, and it got sorted out. C. went to Emory over the summer and was treated very well, as we have been whenever we've been there, and so far, we are all on board. A nonprofit account had to be set up for my transplant costs and meds, and the WOWs are chairing that. So, things are falling into place. Fingers are crossed.
When I have the transplant, I will have to live in Atlanta four weeks. Since we were going back and forth so often for the appts and then for the neck surgery, we joined the High Museum, and we have good friends who live on Peachtree we stay with some, and Atlanta is pretty fabulous to visit- so much to see and do. I know I will have the hardest time missing my animal kids! There is a house people can stay in while recovering from surgery or during treatment, just off the campus.
I am lucky beyond measure to have survived as long as I have, and to have found the surgeons who have kept me going. NIH has also been a god-send, and has enabled us to have some sort of semblance of a life out from under the constant financial stresses and pressures chronic illness can create. I'm blessed beyond measure, too, for the stead-fast support of family and so many friends. Finally, for Excy, who has seen me and taken care of me in ways one would never want to be seen and in situations one hopes never to be in, and somehow, miraculously, still loves me, wants to be with me, and finds me desirable and lovable. Incredible.
Sunday, November 15, 2009
2009
I will post my current status tomorrow so this post won't be so long...
The three brain surgeries earlier had resulted in the ligaments in my neck being stretched. Basically my head was being held on up one side of my neck. My neurosurgeon said between this and a bulging disc, I could end up wearing a neck brace for life if I didn't have a cervical spine stabilization. Between that and the pain I was in, the decision was a no-brainer. NIH couldn't do the surgery though. After the usual ineffectual attempts to get the required surgery in AR (in the future I won't bother, as it's a waste of time and money to even try), I ended up at Emory in Atlanta. My neuro had overheard us discussing going there to meet with a kidney transplant surgeon who had been at NIH, and shouted at us as we were leaving to see a colleague of his there.
So we made an appt with him while beginning the process of getting lined up for a kidney in the future.
This was the first truly good-looking doctor I've had. Better yet, he called after-hrs on his cell -- gave us his cell number -- to say he read the MRIs, understood the pain I was in, commended me for being as strong as I was under the circumstances, and said he'd take care of it! In contrast, the surgeons in AR hadn't felt the situation was critical even though I was in such pain I was living with a heating pad and doubling up my narcotics. And despite my surgeon at NIH calling them, they never bothered to return his calls. (Something he said has never happened before). The thing I couldn't figure out was NIH gives one of the hospitals their major grant money; you'd think they'd at least be courteous due to that...so I felt vindicated.
Dr. Cutie's nurse was funny-- she told us most women looked awful their first appt with Dr. Cutie (when you feel bad, making the effort to look good is difficult and sometimes too much exertion) - but she said on the second appt., no matter how they feel, she said they are always dressed to the nines.
Note: My personal theory through the years -- Excy laughs at me -- is I always look my best for doctor appointments regardless of how I feel. I believe if they see me well dressed and taking care of myself they in turn may treat me with more care. Whether or not that's true I have no idea. Just one of my many quirks.
Nurse for Dr. Cutie also said he used to model in college to pay the bills -- he was 'discovered' walking through the campus -- and sometimes to relieve tension in the OR, he's been known to strike a model pose. I do know he has a sense of humor. The morning of my surgery he came in and marked my neck, saying it was to differentiate me from the gall bladder patient in the next room. I dunno, maybe he wasn't kidding.
The surgery was in May, and I looked like a Star Wars storm trooper most of the summer with the big brace, and it prevented me from driving and such. I had 8 weeks of PT, and am not 100% by any means but the pain is tolerable from what it was before.
Tomorrow I will write the current game plan for the future.
The three brain surgeries earlier had resulted in the ligaments in my neck being stretched. Basically my head was being held on up one side of my neck. My neurosurgeon said between this and a bulging disc, I could end up wearing a neck brace for life if I didn't have a cervical spine stabilization. Between that and the pain I was in, the decision was a no-brainer. NIH couldn't do the surgery though. After the usual ineffectual attempts to get the required surgery in AR (in the future I won't bother, as it's a waste of time and money to even try), I ended up at Emory in Atlanta. My neuro had overheard us discussing going there to meet with a kidney transplant surgeon who had been at NIH, and shouted at us as we were leaving to see a colleague of his there.
So we made an appt with him while beginning the process of getting lined up for a kidney in the future.
This was the first truly good-looking doctor I've had. Better yet, he called after-hrs on his cell -- gave us his cell number -- to say he read the MRIs, understood the pain I was in, commended me for being as strong as I was under the circumstances, and said he'd take care of it! In contrast, the surgeons in AR hadn't felt the situation was critical even though I was in such pain I was living with a heating pad and doubling up my narcotics. And despite my surgeon at NIH calling them, they never bothered to return his calls. (Something he said has never happened before). The thing I couldn't figure out was NIH gives one of the hospitals their major grant money; you'd think they'd at least be courteous due to that...so I felt vindicated.
Dr. Cutie's nurse was funny-- she told us most women looked awful their first appt with Dr. Cutie (when you feel bad, making the effort to look good is difficult and sometimes too much exertion) - but she said on the second appt., no matter how they feel, she said they are always dressed to the nines.
Note: My personal theory through the years -- Excy laughs at me -- is I always look my best for doctor appointments regardless of how I feel. I believe if they see me well dressed and taking care of myself they in turn may treat me with more care. Whether or not that's true I have no idea. Just one of my many quirks.
Nurse for Dr. Cutie also said he used to model in college to pay the bills -- he was 'discovered' walking through the campus -- and sometimes to relieve tension in the OR, he's been known to strike a model pose. I do know he has a sense of humor. The morning of my surgery he came in and marked my neck, saying it was to differentiate me from the gall bladder patient in the next room. I dunno, maybe he wasn't kidding.
The surgery was in May, and I looked like a Star Wars storm trooper most of the summer with the big brace, and it prevented me from driving and such. I had 8 weeks of PT, and am not 100% by any means but the pain is tolerable from what it was before.
Tomorrow I will write the current game plan for the future.
Saturday, November 14, 2009
2007
The spring of 2007 (my 13-yr-old niece's BD to be exact)*, I had surgery to remove my spleen, the tail end of my pancreas, and "as long as they were in the area," the biggest kidney tumor on my remaining kidney, which they no longer refer to as a kidney but a remnant.
They were "scared" to touch the remnant but the risk was too great not to try. The spleen had to go because it was in the way of the surgery, The pancreatic tumor was in a fortunate location where they predicted I wouldn't need meds or a change of diet in the future.
This time the CCC experience was a bit more intense. I was hooked up to more bells and whistles than I ever have been, and 24 hrs after surgery it was determined the little "Kid" wasn't working. But I pointed out I was awfully wet around my waist and incision, and they did some tests and realized the kidney just wasn't hooked up right and needed re-plumbing. So the next day I had another surgery and we held our breaths awhile until it stabilized.
I was there 9 days before being moved to a regular floor. It was depressing. A true floor of heart-break. Either patients were just out of intense surgery or they were there for a 'hail mary' pass. My neighbors were dying every day. The nurses were so thrilled to see me pacing the halls later in the week b/c they seldom see their patients recover.
As typical of abdominal surgery I lost 15 lbs. (the only silver lining to these surgeries, though I wouldn't recommend it). They ended up removing half my pancreas, so I don't need meds, but I have problems with certain foods and can get very ill from a too greasy meal of cheeseburgers or pizza, or from too much dairy (and I adore cheese and ice cream) -- small price to pay, still...
*not the first time. I have missed every family member's BD or have had an operation on their BD. I missed so many holidays I insisted the schedule be pushed so I wouldn't end up away - but time and circumstances seem to conspire against me sometimes....
Next: 2009, and status to date
They were "scared" to touch the remnant but the risk was too great not to try. The spleen had to go because it was in the way of the surgery, The pancreatic tumor was in a fortunate location where they predicted I wouldn't need meds or a change of diet in the future.
This time the CCC experience was a bit more intense. I was hooked up to more bells and whistles than I ever have been, and 24 hrs after surgery it was determined the little "Kid" wasn't working. But I pointed out I was awfully wet around my waist and incision, and they did some tests and realized the kidney just wasn't hooked up right and needed re-plumbing. So the next day I had another surgery and we held our breaths awhile until it stabilized.
I was there 9 days before being moved to a regular floor. It was depressing. A true floor of heart-break. Either patients were just out of intense surgery or they were there for a 'hail mary' pass. My neighbors were dying every day. The nurses were so thrilled to see me pacing the halls later in the week b/c they seldom see their patients recover.
As typical of abdominal surgery I lost 15 lbs. (the only silver lining to these surgeries, though I wouldn't recommend it). They ended up removing half my pancreas, so I don't need meds, but I have problems with certain foods and can get very ill from a too greasy meal of cheeseburgers or pizza, or from too much dairy (and I adore cheese and ice cream) -- small price to pay, still...
*not the first time. I have missed every family member's BD or have had an operation on their BD. I missed so many holidays I insisted the schedule be pushed so I wouldn't end up away - but time and circumstances seem to conspire against me sometimes....
Next: 2009, and status to date
Friday, November 13, 2009
Fabulous Finds Friday
Today's FFF comes without a photo, because who doesn't recall seeing the cheery yellow and cream packaging of a Burt's Bees product? They abound -- from your local grocery to a book store, you can find BB everywhere. I consider their product low priced.
In the mid '90s (can't recall exact date), I was writing a beauty column for a local magazine when BB came to town and put on a seminar (and fed us quite well). It was fun to hear how BB got started -- (humble beginnings in Maine from a local bee-keeper) and evolved into the multi-million product industry it is today, still keeping their product as natural as they can....
Here is BB product I have used for ages and really love. (I have used everything they offer, but these are the ones I have kept):
Baby Bee Apricot oil -- uhmmmm -- smells yummy and makes your skin so soft and fragrant...I use this in the winter just out of the shower or bath.
Honey and Grape seed hand cream -- goes on fast and absorbs fast.
Baby Bee Buttermilk -- smells wonderful and absorbs fast.
Beeswax lip balm.
Radiance Body Lotion -- for when I am bearing skin. It has mica in it so gives it some sheen!
I don't care for the makeup much, though in the summer I like their shimmer lip stick, it's sheer and stays on pretty good -- though my lips seem to eat lipstick quickly...
I do not like their sunscreen with hemp seed oil. It doesn't absorb well at all, and it chalky white, and smells.....
In the mid '90s (can't recall exact date), I was writing a beauty column for a local magazine when BB came to town and put on a seminar (and fed us quite well). It was fun to hear how BB got started -- (humble beginnings in Maine from a local bee-keeper) and evolved into the multi-million product industry it is today, still keeping their product as natural as they can....
Here is BB product I have used for ages and really love. (I have used everything they offer, but these are the ones I have kept):
Baby Bee Apricot oil -- uhmmmm -- smells yummy and makes your skin so soft and fragrant...I use this in the winter just out of the shower or bath.
Honey and Grape seed hand cream -- goes on fast and absorbs fast.
Baby Bee Buttermilk -- smells wonderful and absorbs fast.
Beeswax lip balm.
Radiance Body Lotion -- for when I am bearing skin. It has mica in it so gives it some sheen!
I don't care for the makeup much, though in the summer I like their shimmer lip stick, it's sheer and stays on pretty good -- though my lips seem to eat lipstick quickly...
I do not like their sunscreen with hemp seed oil. It doesn't absorb well at all, and it chalky white, and smells.....
2006
For years NIH had monitored a kidney tumor on the remaining 2/3rd of my right kidney, my largest (the left one remaining after the '94 surgery was a little larger than 1/4th). I kept asking them to operate but they are conservative -- the game plan for VHL is to leave tumors alone until they cause a problem, and, in the kidneys, until they reach a certain circumference (between 3.2 to 3.5). Then they remove them before they metastasize. These guidelines are based on years of scientific and medical study. NIH heads this research so they know what they are doing and felt confident in this decision. It was just one of those times I wish they'd take the patient's feelings and intuition into consideration. In the spring of 2006 they finally deemed it necessary. My hopes were briefly raised about possibly doing it non-invasively by laser but then they decided that wouldn't work.
I went into the surgery with a bad feeling about the whole thing -- I hadn't felt so negative before with surgeries, it was more than the jitters. I just knew it wasn't going to be a positive outcome. The surgery went badly. It took 14 hours. Nine surgeons worked on the kidney and they even benched it (took it out) to work on it. I lost 2 pints of blood. When I woke up in CCC, they wouldn't allow me ice chips or water until they determined my small left kidney could handle it alone, thinking if they had to they could implant a bit of the right one in my abdomen -- which they didn't want to do because it would be a matter of time before it failed and they were thinking down the line that was where a transplanted kidney would be hooked up.
Finally mid-day the next day time had run out and they let the right kidney go. The edema from that surgery had me retaining so much fluid I gained 40 lbs. When I tried to open my eyes they were so scratched I couldn't see and it was very painful. I told the nurse and she said occasionally the eye flips open during surgery and the cornea gets scratched and it gets better soon. When it just grew more painful I insisted on a dr, to her disgust. An eye surgeon came in and went 'Ohhhhh' -- something you really want to hear... My corneas were scratched quite a bit and both anesthesiologists came in and apologized. It took a week before I could read and see without pain.
A nurse assistant who couldn't speak English well came over the weekend and was the one elected to take me to get an X-ray -- go figure. She was unfamiliar with the layout of the hospital and no one was working on the weekend to stop and ask directions and it took an hour before we got to the location. To add insult to injury, when I could finally climb back in my bed she tripped over the line of my catheter and urine spilled all over the floor. As soon as Excy left at 10 pm after that grueling day the lights flipped on and a voice merrily announced they were changing my room - like this was exciting news -- oh, I was more than ready to get out of that CCC....I was in such poor shape I required a pic line directly to the heart for meds.
The head of surgery and all the drs who had been involved came in my tiny room and apologized. Because of me, they now know not to wait until it reaches that size when it's so close to a major artery. Far worse, the tumor had already started to travel -- now we had to watch for spread. VHL tumors turn cancerous in the kidney. In other organs most tumors are benign -- but when they do turn cancerous -- game over. They don't respond to chemo or radiation and grow quickly. Being a guinea pig for science sucks sometimes.
Fortunately it's been a long enough time that we're confident the cancer did not spread, and my little left kidney is still working hard. I was warned it might give out or the flu or bad cold might shut it down, but so far so good.
All in all this surgery was traumatic. When they start taking organs, you know you're getting down to the wire. The next surgery the following spring went better but even more organs were removed, and as one dr told me, we are getting down to the end game.
Next up: 2007. Then 2009. After these two posts, I won't write about this anymore, I promise. Until I have a new surgery - we are in a holding pattern for removing the remaining kidney -- then dialysis -- then a kidney transplant....
I went into the surgery with a bad feeling about the whole thing -- I hadn't felt so negative before with surgeries, it was more than the jitters. I just knew it wasn't going to be a positive outcome. The surgery went badly. It took 14 hours. Nine surgeons worked on the kidney and they even benched it (took it out) to work on it. I lost 2 pints of blood. When I woke up in CCC, they wouldn't allow me ice chips or water until they determined my small left kidney could handle it alone, thinking if they had to they could implant a bit of the right one in my abdomen -- which they didn't want to do because it would be a matter of time before it failed and they were thinking down the line that was where a transplanted kidney would be hooked up.
Finally mid-day the next day time had run out and they let the right kidney go. The edema from that surgery had me retaining so much fluid I gained 40 lbs. When I tried to open my eyes they were so scratched I couldn't see and it was very painful. I told the nurse and she said occasionally the eye flips open during surgery and the cornea gets scratched and it gets better soon. When it just grew more painful I insisted on a dr, to her disgust. An eye surgeon came in and went 'Ohhhhh' -- something you really want to hear... My corneas were scratched quite a bit and both anesthesiologists came in and apologized. It took a week before I could read and see without pain.
A nurse assistant who couldn't speak English well came over the weekend and was the one elected to take me to get an X-ray -- go figure. She was unfamiliar with the layout of the hospital and no one was working on the weekend to stop and ask directions and it took an hour before we got to the location. To add insult to injury, when I could finally climb back in my bed she tripped over the line of my catheter and urine spilled all over the floor. As soon as Excy left at 10 pm after that grueling day the lights flipped on and a voice merrily announced they were changing my room - like this was exciting news -- oh, I was more than ready to get out of that CCC....I was in such poor shape I required a pic line directly to the heart for meds.
The head of surgery and all the drs who had been involved came in my tiny room and apologized. Because of me, they now know not to wait until it reaches that size when it's so close to a major artery. Far worse, the tumor had already started to travel -- now we had to watch for spread. VHL tumors turn cancerous in the kidney. In other organs most tumors are benign -- but when they do turn cancerous -- game over. They don't respond to chemo or radiation and grow quickly. Being a guinea pig for science sucks sometimes.
Fortunately it's been a long enough time that we're confident the cancer did not spread, and my little left kidney is still working hard. I was warned it might give out or the flu or bad cold might shut it down, but so far so good.
All in all this surgery was traumatic. When they start taking organs, you know you're getting down to the wire. The next surgery the following spring went better but even more organs were removed, and as one dr told me, we are getting down to the end game.
Next up: 2007. Then 2009. After these two posts, I won't write about this anymore, I promise. Until I have a new surgery - we are in a holding pattern for removing the remaining kidney -- then dialysis -- then a kidney transplant....
Wednesday, November 11, 2009
2001
forward: In 1997, a sainted woman whose husband died of VHL and whose young son also had it, began something called the VHL Alliance, a nonprofit dedicated to the dissmination of info on the disease and support of the study of it. Although it's a rare disease we are fortunate in that scientists and researchers want to study it b/c it can benefit those with other cancers, mainly brain, kidney and pancreatic. Today, J's efforts have evolved into a world-wide organization, and VHL Clinical Care Centers exist in certain states and throughout the world. VHL Alliance has raised money to fund the study of the chronic disease. Finding it was a ray of hope: talking to other VHL-ers and knowing you were not alone was priceless. Mine started fairly late, it usually hits during puberty, and it's rare when it doesn't run in the family -- not until 4 years ago did we know anyone else in my family were afflicted by it. I ended up getting involved with the Alliance enough to write a few articles for the newsletter and the script for their intro/fundraising video, and when regional meetings were in TN, we drove to them. I then hosted a regional meeting in AR. Through the contacts we made, Excy learned of NIH trials studying brain, kidney, and pancreatic cancer I could enroll in, and they accepted me the fall of 2001. Finally, after so many years I met NIH protocol. In exchange for being in research trials, medical tests and cares VHL related are free. We no longer had to try to coordinate all the tests and MRIs and find doctors to examine them. We had worried constantly about the things that were slipping through the cracks.
Our trip to NIH in October, I was nervous not only b/c it was the first time we had gone to NIH and we didn't know what to expect, but I knew I had another brain tumor that was beginning to manifest itself. I was prepared to be told it was time for another surgery and to go -- wherever they recommended (my surgeon at Georgetown U Hospital having retired). I was stunned when the surgeon came in, pointed out the tumor on a MRI, and said they'd operate the following Monday. Nirvana.
And it was the quickest recovery I've ever had. And, they listened to my plea and saved as much hair as they could, shaving up the bottom but leaving a 'curtain' on top to fall over the incision. Yes, I'm vain about my hair. I also know from the previous surgeries my head is now lumpy and caved-in in certain areas and I do not look 'cute' shorn. Some people can cue-ball. Others can't.
Because NIH is a research facility they are more attentive than a regular hospital -- more nurses per patient - and less hassled. But sometimes you have to put up with some odd stuff. I'd like to speak to the dim bulb who thought putting a patient just out of brain surgery in a vibrating bed would be a good idea. Its supposed to keep you from developing clots, but it was an awful night. I'd start out at the head, get shaken down to the foot, and Excy and a nurse would grab me under the arms and haul me back up to the head again. Geez. As I was being taken down the hall into the regular recovery floor, I saw the bed being wheeled out of the room, so I guess that disaster was averted for other patients. I've had several other surgeries there and have yet to be in that kind of bed again, anyway.
We had to stay over Thanksgiving, which we spent with our friend and my ex-boss, K. The drama was the day we were to leave. I had to get my stitches out first, and make the flight, and for awhile it looked like that might not happen. Finally a sleepy intern with the foulest breath in the world came in the room -- could knock an elephant over -- and breathed on me (I saw K. practically backing out of the room), and began tugging away, angry they just hadn't shaved my head to save him a few precious minutes of exertion. Ass. Women like their hair.
My head was super-tender when we got to AA -- the airline insisted they put me in some wheelchair that transfers you directly into the plane despite my protests I could walk to the nearby seat - and then they drop me. That further rattled the 'ole bean and it was throbbing by then.
So when a 'lady' knocked me in the head with her purse getting into her seat in the row behind us, I leaned forward and began to cry softly into my hands. Another woman on her row asked Excy if I was alright, and he turned around and said I had just had brain surgery. "I didn't hit her that hard!" The woman who had hit me piped up. Geez. I felt like turning around and asking if she'd like to try it again. Manky cow.
Getting home took forever, and when we finally did the house was a disaster. We had expected to be gone only one week, and the young house sitter apparently had stopped doing anything week #2 but throwing food down for the cats. The place was foul and stank to high heaven. The cats were cold and indifferent -- they were pissed to have been abandoned -- and I opened the windows and collapsed on the bed. When they realized we had not been gone on a vacation, they all came in and apologized and we spent the night covered in fur blankets. All was forgiven. It was bliss to be home again.
Next up 2006
Our trip to NIH in October, I was nervous not only b/c it was the first time we had gone to NIH and we didn't know what to expect, but I knew I had another brain tumor that was beginning to manifest itself. I was prepared to be told it was time for another surgery and to go -- wherever they recommended (my surgeon at Georgetown U Hospital having retired). I was stunned when the surgeon came in, pointed out the tumor on a MRI, and said they'd operate the following Monday. Nirvana.
And it was the quickest recovery I've ever had. And, they listened to my plea and saved as much hair as they could, shaving up the bottom but leaving a 'curtain' on top to fall over the incision. Yes, I'm vain about my hair. I also know from the previous surgeries my head is now lumpy and caved-in in certain areas and I do not look 'cute' shorn. Some people can cue-ball. Others can't.
Because NIH is a research facility they are more attentive than a regular hospital -- more nurses per patient - and less hassled. But sometimes you have to put up with some odd stuff. I'd like to speak to the dim bulb who thought putting a patient just out of brain surgery in a vibrating bed would be a good idea. Its supposed to keep you from developing clots, but it was an awful night. I'd start out at the head, get shaken down to the foot, and Excy and a nurse would grab me under the arms and haul me back up to the head again. Geez. As I was being taken down the hall into the regular recovery floor, I saw the bed being wheeled out of the room, so I guess that disaster was averted for other patients. I've had several other surgeries there and have yet to be in that kind of bed again, anyway.
We had to stay over Thanksgiving, which we spent with our friend and my ex-boss, K. The drama was the day we were to leave. I had to get my stitches out first, and make the flight, and for awhile it looked like that might not happen. Finally a sleepy intern with the foulest breath in the world came in the room -- could knock an elephant over -- and breathed on me (I saw K. practically backing out of the room), and began tugging away, angry they just hadn't shaved my head to save him a few precious minutes of exertion. Ass. Women like their hair.
My head was super-tender when we got to AA -- the airline insisted they put me in some wheelchair that transfers you directly into the plane despite my protests I could walk to the nearby seat - and then they drop me. That further rattled the 'ole bean and it was throbbing by then.
So when a 'lady' knocked me in the head with her purse getting into her seat in the row behind us, I leaned forward and began to cry softly into my hands. Another woman on her row asked Excy if I was alright, and he turned around and said I had just had brain surgery. "I didn't hit her that hard!" The woman who had hit me piped up. Geez. I felt like turning around and asking if she'd like to try it again. Manky cow.
Getting home took forever, and when we finally did the house was a disaster. We had expected to be gone only one week, and the young house sitter apparently had stopped doing anything week #2 but throwing food down for the cats. The place was foul and stank to high heaven. The cats were cold and indifferent -- they were pissed to have been abandoned -- and I opened the windows and collapsed on the bed. When they realized we had not been gone on a vacation, they all came in and apologized and we spent the night covered in fur blankets. All was forgiven. It was bliss to be home again.
Next up 2006
P.S.
This was so easy it's often forgotten...
Eye tumor lasered in '97.
Hardest thing was the wait of three hours to see the surgeon (emergency delayed my appt.)
Piece of cake. Over in 15 minutes. No pain.
The world looked like the inside of an Easter egg (all pink-purple) for 30 minutes and that was it.
Ta-dah.
(I hear the sighs of relief. Thanks so much).
Eye tumor lasered in '97.
Hardest thing was the wait of three hours to see the surgeon (emergency delayed my appt.)
Piece of cake. Over in 15 minutes. No pain.
The world looked like the inside of an Easter egg (all pink-purple) for 30 minutes and that was it.
Ta-dah.
(I hear the sighs of relief. Thanks so much).
Tuesday, November 10, 2009
1997
I thought because of the previous surgeries I'd weathered I was the 'comeback kid;' able to handle anything that came my way. God Laughs.
A spinal tumor had been slow growing for years. But there's not much room in that little 'ole chord, ya know? Complicating this fact were doctors telling me 1) I may never walk again, and 2) the surgery would be a beast. (No kidden'), and they recommended I wait as long as I could. Shit. The onus is on me to make that call. I'm a pretty tough cookie and a stoic person, so I hold off until it's pretty obvious I can't put it off much longer. I shouldn't have waited so long.
Wonderful Excy, now in charge of all things medical like insurance and finding surgeons for us to interview so that all I have to do is make the final decision, recover, and work towards a 'new normal,' finds the perfect surgeon after we try MD Anderson and UAMS. Unfortunately he's in MD at Johns Hopkins. So we sell a nice new truck. At least our Burnside relatives are nearby and we can stay with them. The day before I leave I spend interviewing people for a brochure I'm writing for a college on the side freelance, and a friend's husband is found dead in his hotel room in China. She's Chinese-Indonesian and lost, so we spend the afternoon tracking down officials who can return his body, and I spend the next day's plane trip writing the obituary and wishing I could stay home to be helpful.
At John Hopkins (JH), the imminent surgeon thinks we just might get lucky and take care of this tumor by embolizing it.* The procedure worked in that the tendrils of the tumor wrapped around the spinal cord died off, but surgery was still required to pluck it out like a cherry from inside the spinal cord. When I came out of the procedure I kept asking Excy why I was in such pain and he would explain all over again that I had surgery as well. Looking back, it was pretty funny. ICU was no joke, however. The first night no nurses were to be found on the floor. Zero. Zip. Nada. My room mate was Asian, spoke no
English, and appeared to be alone. She began banging her head against the guard rails of her bed she was in such pain. Excy finally tracked them down in a break room, backs turned against the monitors. He told them my room mate was trying to kill herself. They were annoyed at being interrupted and told him 'visiting' hours were over long ago.
I'll tell you something about Excy. He doesn't emote. He doesn't get angry. He is never, ever rude. His answer to my hospitalizations, at least after the surgeries, is to simply ignore anyone who tries to get him to leave my side. He can weigh such a charm offensive (and fetches ice and sodas from other floors for the nurses) that they fall in love with him and end up finding him cots and extra pillows. It helps that he's a tall good-looking cowboy. So no one usually tries to kick him out very hard. But when he runs up against a Nurse Ratched -- and they are out there -- they never win the round. (Fortunately there are far more wonderful, hardworking nurses than bad ones out there. But law of averages abounds. Just sayen'...)
The next day I was being moved to another floor in a gurney and the nurse rammed the bed into a wall. Holy mother of god. I still remember the pain. Then --she did it again! No apologies. The floor nurses wondered why I couldn't stop moaning. It took a lot of morphine that day. At least on that floor I didn't feel they were trying to kill me. I don't like nurses in the room, seldom use my call button until it's time for meds, and want to be left alone, in short, not a needy patient. But this was odd. Finally Excy's cousin by marriage, the head of gynecology then, began popping by, which made the nurses nervous, and they seemed to shape up. We couldn't fly home so went to Court and Sally's new house on Burnside and I stayed in their comfortable upstairs guest bed all through Christmas and New Years. I have spent too many holidays away from family in hospitals.
We had driven to MD, so Excy drove home and a good friend came up to accompany me home on a flight. Careful arrangements were made for a nonstop flight that should have taken 3 hours total. Propped up in a wheelchair, C. gave me a lot of pain pills and off we went. Weather was horrible across the country and after 9 hours we ended up in TX. At 10 p.m. we had the option of either getting a hotel room for the night or pressing on to AR. I was dissolving into tears I felt so horrible, and C. drew herself up, looked me in the eye, and said she was giving me a fist-full of pills and we WERE going home that night. Thank god for C. She did a yeoman's job -- getting travel arrangements changed when the weather and delays bounced us around the country, and taking care of luggage and a hurting friend in a wheelchair. She's a tiger when she has to be.
Four weeks after we got home the pain was getting worse. Nerve damage from the surgery developed into RSD (reflex sympathetic dystrophy), which affected my entire right leg and lower back. I couldn't put any weight on my right foot, it was so big I could only wear a Birkenstock sandal, and I couldn't sit, sleep, or stand longer than 5 minutes without pain. Trips to town to the dr. had to be accomplished riding in the backseat and pulling over to the side of the road so I could walk about. Thank god we lived in the country, because I could go outside and scream at the top of my lungs until I grew tired and weak and Excy would carry me inside. For the first time in my life I understood suicide. I knew if this was what the future held, I couldn't deal.
After 3 months I found a pain doctor who switched meds, and things improved, but I spent a total of 18 months basically house-bound when I wasn't at PT or the therapy pool. I was on a walker but gradually at the end of the year graduated to a cane. On good days I walk without one when I don't mind weaving around, though I need an arm to step off curbs and stuff like that. I drive with hand controls. Oxycontin, or OxyIR, is taken every day, sometimes twice a day, along with other meds, but they keep me relatively active. When we remodeled the house Excy made it an ADA house and I have a therapy pool and a Pilates table. I have had acupuncture now since '92. All these things help a lot.
I was proud of how I was walking and thought I was doing a pretty good job when one day I was walking across the Kroger parking lot and a woman came up to me (being disabled, you seem to join this 'club,' whether you want to or not), and she said "Hon, I've been watchen' yu for weeks now, an I just wanna know, how did yu larn ta walk so well on that artificial leg of yorn?" Oops. Guess I wasn't walking as well as I thought after all. I'm a little like a cowpoke sidekick -- but - I'm not in a wheelchair, so I guess I'm doing something right. I had to go on disability from Winrock. I miss my career, but freelance and being home has forced me to go into a more creative bent. I wish I felt well enough to do more though.
Since then I have had some rough surgeries but so far nothing has equaled that year. It seems surreal now. Words can't really touch it. I found my journal from that year awhile back, and on some pages I had written: I'm in pain I'm in pain...over and over again, which freaked me out. Made me think of that character losing it in The Shining.....
Next installment: 2001
* I wish they would just stop saying this and getting my hopes up. I have never been able to have the nifty laser, stereotactic and whatever the hell less invasive surgery there is out there....
A spinal tumor had been slow growing for years. But there's not much room in that little 'ole chord, ya know? Complicating this fact were doctors telling me 1) I may never walk again, and 2) the surgery would be a beast. (No kidden'), and they recommended I wait as long as I could. Shit. The onus is on me to make that call. I'm a pretty tough cookie and a stoic person, so I hold off until it's pretty obvious I can't put it off much longer. I shouldn't have waited so long.
Wonderful Excy, now in charge of all things medical like insurance and finding surgeons for us to interview so that all I have to do is make the final decision, recover, and work towards a 'new normal,' finds the perfect surgeon after we try MD Anderson and UAMS. Unfortunately he's in MD at Johns Hopkins. So we sell a nice new truck. At least our Burnside relatives are nearby and we can stay with them. The day before I leave I spend interviewing people for a brochure I'm writing for a college on the side freelance, and a friend's husband is found dead in his hotel room in China. She's Chinese-Indonesian and lost, so we spend the afternoon tracking down officials who can return his body, and I spend the next day's plane trip writing the obituary and wishing I could stay home to be helpful.
At John Hopkins (JH), the imminent surgeon thinks we just might get lucky and take care of this tumor by embolizing it.* The procedure worked in that the tendrils of the tumor wrapped around the spinal cord died off, but surgery was still required to pluck it out like a cherry from inside the spinal cord. When I came out of the procedure I kept asking Excy why I was in such pain and he would explain all over again that I had surgery as well. Looking back, it was pretty funny. ICU was no joke, however. The first night no nurses were to be found on the floor. Zero. Zip. Nada. My room mate was Asian, spoke no
English, and appeared to be alone. She began banging her head against the guard rails of her bed she was in such pain. Excy finally tracked them down in a break room, backs turned against the monitors. He told them my room mate was trying to kill herself. They were annoyed at being interrupted and told him 'visiting' hours were over long ago.
I'll tell you something about Excy. He doesn't emote. He doesn't get angry. He is never, ever rude. His answer to my hospitalizations, at least after the surgeries, is to simply ignore anyone who tries to get him to leave my side. He can weigh such a charm offensive (and fetches ice and sodas from other floors for the nurses) that they fall in love with him and end up finding him cots and extra pillows. It helps that he's a tall good-looking cowboy. So no one usually tries to kick him out very hard. But when he runs up against a Nurse Ratched -- and they are out there -- they never win the round. (Fortunately there are far more wonderful, hardworking nurses than bad ones out there. But law of averages abounds. Just sayen'...)
The next day I was being moved to another floor in a gurney and the nurse rammed the bed into a wall. Holy mother of god. I still remember the pain. Then --she did it again! No apologies. The floor nurses wondered why I couldn't stop moaning. It took a lot of morphine that day. At least on that floor I didn't feel they were trying to kill me. I don't like nurses in the room, seldom use my call button until it's time for meds, and want to be left alone, in short, not a needy patient. But this was odd. Finally Excy's cousin by marriage, the head of gynecology then, began popping by, which made the nurses nervous, and they seemed to shape up. We couldn't fly home so went to Court and Sally's new house on Burnside and I stayed in their comfortable upstairs guest bed all through Christmas and New Years. I have spent too many holidays away from family in hospitals.
We had driven to MD, so Excy drove home and a good friend came up to accompany me home on a flight. Careful arrangements were made for a nonstop flight that should have taken 3 hours total. Propped up in a wheelchair, C. gave me a lot of pain pills and off we went. Weather was horrible across the country and after 9 hours we ended up in TX. At 10 p.m. we had the option of either getting a hotel room for the night or pressing on to AR. I was dissolving into tears I felt so horrible, and C. drew herself up, looked me in the eye, and said she was giving me a fist-full of pills and we WERE going home that night. Thank god for C. She did a yeoman's job -- getting travel arrangements changed when the weather and delays bounced us around the country, and taking care of luggage and a hurting friend in a wheelchair. She's a tiger when she has to be.
Four weeks after we got home the pain was getting worse. Nerve damage from the surgery developed into RSD (reflex sympathetic dystrophy), which affected my entire right leg and lower back. I couldn't put any weight on my right foot, it was so big I could only wear a Birkenstock sandal, and I couldn't sit, sleep, or stand longer than 5 minutes without pain. Trips to town to the dr. had to be accomplished riding in the backseat and pulling over to the side of the road so I could walk about. Thank god we lived in the country, because I could go outside and scream at the top of my lungs until I grew tired and weak and Excy would carry me inside. For the first time in my life I understood suicide. I knew if this was what the future held, I couldn't deal.
After 3 months I found a pain doctor who switched meds, and things improved, but I spent a total of 18 months basically house-bound when I wasn't at PT or the therapy pool. I was on a walker but gradually at the end of the year graduated to a cane. On good days I walk without one when I don't mind weaving around, though I need an arm to step off curbs and stuff like that. I drive with hand controls. Oxycontin, or OxyIR, is taken every day, sometimes twice a day, along with other meds, but they keep me relatively active. When we remodeled the house Excy made it an ADA house and I have a therapy pool and a Pilates table. I have had acupuncture now since '92. All these things help a lot.
I was proud of how I was walking and thought I was doing a pretty good job when one day I was walking across the Kroger parking lot and a woman came up to me (being disabled, you seem to join this 'club,' whether you want to or not), and she said "Hon, I've been watchen' yu for weeks now, an I just wanna know, how did yu larn ta walk so well on that artificial leg of yorn?" Oops. Guess I wasn't walking as well as I thought after all. I'm a little like a cowpoke sidekick -- but - I'm not in a wheelchair, so I guess I'm doing something right. I had to go on disability from Winrock. I miss my career, but freelance and being home has forced me to go into a more creative bent. I wish I felt well enough to do more though.
Since then I have had some rough surgeries but so far nothing has equaled that year. It seems surreal now. Words can't really touch it. I found my journal from that year awhile back, and on some pages I had written: I'm in pain I'm in pain...over and over again, which freaked me out. Made me think of that character losing it in The Shining.....
Next installment: 2001
* I wish they would just stop saying this and getting my hopes up. I have never been able to have the nifty laser, stereotactic and whatever the hell less invasive surgery there is out there....
Monday, November 9, 2009
Second Surprise...1992, 1993, and '94
A few weeks after we had gotten back from our second London vacation, and having just been at Winrock 6 months, I was exercising after work doing a yoga pose when I fell over and began to experience that intensely dizzying sensation I had back when I had the first brain tumor nine years ago. Believe me, when you feel dizzy like that, you immediately know there is no way it can be normal. A few days later I noticed I was weaving while walking straight and my handwriting was going. I'm an editor and writer so I pay attention to the details. I went to a neurosurgeon recommended at our finest hospital in AR, where we had moved the previous spring. When I told him my background and that I had another brain tumor I was flabbergasted to hear what he said next: he'd stake his medical profession on the fact I didn't have another brain tumor. I insisted on an MRI. Excy had to go out of town to Ohio that weekend, and I went home that night and told him he'd better not, that something was going to happen. He had lined up all these meetings for the house he was designing and decided he'd better go but promised to turn right around and drive home. I got my MRI the next day, on Saturday. Sunday I had gone to the grocery and was putting stuff away when I had a seizure. I crawled up the stairs and lay on the cool bathroom floor. A friend called, and bless her, she came over and cleaned me up, and my parents drove down (I was in another town 30 minutes away) to take me to the ER, where they found my films, and confirmed I had a tumor (the size of a quail egg). They stabilized me and I spent the night at my parent's house. Excy drove home all night to see a pathetic little post-it on the door: I had a seizure and was going to the ER with my parents. Don't worry, I'd be okay.
On Monday the surgeon asked if I thought I'd be 'okay' for a week while he went on vacation (!) I said I didn't have any idea but I hoped so, I was in the middle of editing the annual report and a newsletter. But within days I was feeling so awful I was bedridden. When the surgeon returned, he informed us he didn't feel comfortable operating on me. Excy called my old surgeon in DC, this was on a Friday, and he said to get on a plane and they'd operate Monday. Boy was he mad when I saw him -- at me! He told me I'd have deficits for waiting so long. He was right. It was a difficult surgery, and I had to relearn how to walk and write. Eventually with PT and OT, it came back - I was just a little weaker on the right side. That was when he sat us down and told us I had VHL (von Hippel-Lindau), a rare cancer, and it was time to get kidney tumors operated on. And he was retiring, so he gave us all my files.
Because I had already been diagnosed, I couldn't go to the National Institutes of Health and didn't meet protocol for any studies they had then, but NIH was willing to read my films and make recommendations. I tried AR again, but the drs there didn't know more than I, and one said they were "thrilled to meet someone with VHL so they could study it." No thanks.
We ended up at the Cleveland Clinic, where I had partial nephrotomies of the right and then the left kidney. When I went back to have an operation on the left kidney they found that the right kidney had shut down, so had to go in and put in a shunt and basically get it kick-started again, and I had complications that necessitated having four minor operations. I was ready for them to just take the entire kidney but my surgeon insisted they try one more time because he knew I would have tumors in the future, and the name of the game would be to try to "run " on my own kidney power as long as possible.
Thus began the years of trying to learn as much as we could about a rare disease and find doctors who knew about it, and coordinating the myriad tests necessary for monitoring all the organs where tumors can grow (brain, spine, eyes, kidney, pancreas, adrenal gland...)...it was a challenge to say the least. Although I had health insurance from work, all the surgeries and trips and tests necessitated selling a truck, and a horse trailer, and the years from '92 until I got into NIH in 2002 were always a struggle....
Next installment: 1997: a dark 18 months that were the most challenging of my life to date...
On Monday the surgeon asked if I thought I'd be 'okay' for a week while he went on vacation (!) I said I didn't have any idea but I hoped so, I was in the middle of editing the annual report and a newsletter. But within days I was feeling so awful I was bedridden. When the surgeon returned, he informed us he didn't feel comfortable operating on me. Excy called my old surgeon in DC, this was on a Friday, and he said to get on a plane and they'd operate Monday. Boy was he mad when I saw him -- at me! He told me I'd have deficits for waiting so long. He was right. It was a difficult surgery, and I had to relearn how to walk and write. Eventually with PT and OT, it came back - I was just a little weaker on the right side. That was when he sat us down and told us I had VHL (von Hippel-Lindau), a rare cancer, and it was time to get kidney tumors operated on. And he was retiring, so he gave us all my files.
Because I had already been diagnosed, I couldn't go to the National Institutes of Health and didn't meet protocol for any studies they had then, but NIH was willing to read my films and make recommendations. I tried AR again, but the drs there didn't know more than I, and one said they were "thrilled to meet someone with VHL so they could study it." No thanks.
We ended up at the Cleveland Clinic, where I had partial nephrotomies of the right and then the left kidney. When I went back to have an operation on the left kidney they found that the right kidney had shut down, so had to go in and put in a shunt and basically get it kick-started again, and I had complications that necessitated having four minor operations. I was ready for them to just take the entire kidney but my surgeon insisted they try one more time because he knew I would have tumors in the future, and the name of the game would be to try to "run " on my own kidney power as long as possible.
Thus began the years of trying to learn as much as we could about a rare disease and find doctors who knew about it, and coordinating the myriad tests necessary for monitoring all the organs where tumors can grow (brain, spine, eyes, kidney, pancreas, adrenal gland...)...it was a challenge to say the least. Although I had health insurance from work, all the surgeries and trips and tests necessitated selling a truck, and a horse trailer, and the years from '92 until I got into NIH in 2002 were always a struggle....
Next installment: 1997: a dark 18 months that were the most challenging of my life to date...
Dark Victory
Okay **sigh** this week I will start to tell 'the story' a bit. The cancer story. When I first started blogging I didn't want to -- I didn't want this to be a disability/illness type blog -- then I didn't feel like it -- now I think I should, a bit, especially if it can help anyone else....I refuse to let chronic illness define who I am, but it does necessarily play a huge part of my life (damn it all), so it does refine my life to a point....
So 'to start at the very beginning...' (do you hear the strains of a Julie Andrews melody in your head welling up now?)
This is an account of how I diagnosed myself with a brain tumor way back in 1984. Some of this is published in an essay in the summer issue of Survivor's Review.It wasn't until a few years after that I learned I in fact, have a rare cancer. Ignorance in that case, was bliss....
After college, I headed out west and had what I basically think of as my 'gap' year -- I wish someone had told me one is supposed to do this before college; it would have made so much more sense. I would've settled down and gotten better grades. Any hoo, after my two-year jaunt spent basically playing, I decided I'd better actually do something before future employers looked at my resume and chortled. I first went to NYC, but coming from AR and a tiny ski resort in UT, it was not for me. My college boyfriend was working for one of our Senators in DC, so I took the train there, got off, looked around at all the green space and low buildings and (after NYC) noticed a mellow vibe, and thought, now this, I can do.
Because of my meager writing experiences at University and journalism background, I was hired to develop a new magazine for architects along with just two other editors, one of which left after the first issue. So there we were, two woman, one still wet behind the ears (guess who), in a field dominated by men, putting out a male-oriented magazine, Architectural Technology. K. and I were basically in the trenches together. God was it fun. The only sour note was that increasingly over the past 15 months I had started to feel -- weird -- one day I'd be sick to my stomach, the next fine. My fellow workers in the building didn't know me -- when I moved to DC I only knew my boyfriend, so I suspected (and found out for sure later) they thought I was a hypochondriac. Thank god K. knew my work ethic (more importantly, my type-A personality), and she believed with me something was amiss. She was always supportive. Finally I redoubled my efforts to find out what was making me feel so lousy and bone-tired. For three months I went to specialist after specialist. I was hospitalized for shock and let go one night -- they didn't even take tests! I strongly suspected it was a brain tumor when certain things began to go wonky I considered neuro-related......
************************
I’m puking into a white Dixie cup -- the first thing I grabbed when my stomach began to lurch again. The doctor winces in distaste and informs me he can’t find anything wrong:
“Seventy percent of my female patients are psychosomatic,” he tells me.
As if it were perfectly normal for a 24-year-old to be unable to stop retching into a specimen cup in his office.
Two nights ago I was hospitalized for vomiting so much I went into shock, but after being stabilized at emergency, was released. Now I’m back to pursue more answers. I’m really beginning to dislike this doctor, with his closed, smug face, and air of disdain. He had been highly recommended. But I fear his fancy office on Foxhall Road in the swank area of Palisades in D.C., was better suited for people with run-of-the-mill issues. Whatever my problems are, they clearly aren’t easily diagnosable.
We’ve run through various specialists and tests, mostly for stomach disorders.
“I need a CT scan*. I have a brain tumor,” I mumbled, my face close to the Dixie cup.
“What makes you think you have a brain tumor?”
I repeated again what I’ve been reciting at every appointment:
“It’s obviously neurological. I have constant headaches. I’m losing my balance -- falling if I lean over, my handwriting is going; I’m having trouble walking…”
He cut me off:
“You don’t have a brain tumor. Will you go see a psychiatrist?”
“If I do, will you give me a CT scan?”
The session with the shrink was uneventful. As he watched me leave, weaving along the long mirrored hallway towards the front door, he called out, “Are you aware you’re walking sideways?”
I turned back towards him, “Oh, yeah, I have for weeks now.”
When I reached the house, I called my boss and told her I’d be taking a leave of absence until I could find out what was wrong. No doubt tired of seeing me stumble into the office every day wan, pale, and sweating, needing to rest in the ladies’ lounge for most of the day, she readily agreed. My usual routine was to drag myself to the Metro and then to work, drag myself home on the same train – walking many long city blocks each way – and then collapse into bed or onto the nearest couch or chair, where I would fall into a deep, dreamless sleep until waking to what felt like struggling through fathomless dark waters with yards of tightly wrapped cheesecloth around my torso.
My headaches had become dull and constant, so numbing that when anyone talked to me anymore I struggled to understand them, as my thinking grew fuzzier. At times my eyeballs seemed to rattle back and forth in their sockets and I felt a dizziness I could only describe as that of a cartoon character – remember how Sylvester the cat’s eyes and face seemed to spin uncontrollably after Tweetie Bird pounded him on the head with a mallet? This afternoon, however, something made me flop onto the couch and turn on the TV. Dark Victory with Bette Davis was on. I became engrossed in the story. Well, Damn! She had a brain tumor, and I had all the classic symptoms that were mentioned…without waiting to see how the movie turned out, I turned off the set and called for a taxi.
Noting my jogging suit, the driver asked if I’d be running through Rock Creek Park after I gave him general directions.
“No, I’m going to the emergency room at Georgetown Hospital. I have a brain tumor.”
He didn’t speak for the rest of the drive, but did wish me ‘good luck,’ when I climbed out of the cab.
“What’s wrong with you?” said the nurse at reception. When I told her, she looked at me like I was either prescient, or would shortly be escorted to the psych ward.
An intern came down and looked into my eyes with a flashlight thingy.
I finally got my CT scan.
As I was lying on a hospital bed several hours later, the intern came in and grabbed my hand.
“You’re right; you have a brain tumor.”
I’d have an operation on Monday – this was Friday – and the chief of neurology would be performing it himself, he said. I would be in good hands. They would admit me right away and keep me over the weekend to stabilize me.
The news was vindication for the past 18 months I’d spent trying to convince different specialists I was ill; coworkers who mumbled under their breath that perhaps I was a hypochondriac; a boyfriend who said that living with me was “like living with an 80-year old;” and doctors who said “when they see hoof prints, they think of horses, not zebras.”
I was relieved. I had secretly worried I had leukemia, which had killed my paternal grandfather as a young adult. I didn’t consider this brain tumor life threatening. They’d take it out and I’d be okay. I didn’t understand why my boyfriend broke down and started to cry, or why he wanted to call my parents.
“Let’s wait and tell them after the operation, when I’m okay.”
He thought this an absurd idea, and called them himself.
Horrified, they flew up the next day. My equal parts naiveté and strength served me well. I sailed through the operation. Because I couldn’t be admitted without listing a primary doctor, I had put down the absolutely ineffectual doctor. So every day for four days after the surgery, he popped his head through the door of my room, calling out “How ya doing today? Feeling better?” I’d turn my head to the wall and ignore him. I was gratified to see my surgeon turn on his heel and brush his inquiries off, pushing past him as if avoiding a pesky panhandler.
Later I got a bill in the mail for $400 – he had charged $100 for every time he stuck his head in the room for less than a minute. I immediately called his office and said while I should report him for medical malpractice, I was tired and needed to concentrate on my recovery, and if I never heard from him again I wouldn’t call the AMA. In retrospect I should have, though, as I have no doubt he’s busily misdiagnosing people to this day.
It was nine years before I had the symptoms of another brain tumor. This time, when the neurologist in the new city where I was living said he’d “stake his medical profession on the fact I didn’t have another brain tumor,” I just looked at him like I couldn’t believe anyone could be that obtuse. And told him to give me an MRI that afternoon.
On that fateful day 24 years ago, I learned to take my intuition for granted and to listen to my inner voice. That I was the only one who knew what was ‘normal’ for me better than anyone else. I wish I could say that from that day on I have always acted on this knowledge. Unfortunately, it has taken a few more medical crises before I finally learned the hard way to master the art of taking myself seriously.
After a half-dozen incidents where not following through on my intuition has resulted in serious medical consequences, today if I meet a medical professional who dismisses me in any way, I quickly leave and find another who will work as a member of my medical team. When your life is on the line, you can’t afford not to be vigilant and proactive. I’ve been walking the journey of a survivor of a rare cancer ever since – having finally been diagnosed with von Hippel-Lindau disease, and having undergone 10 of the most difficult surgeries anyone could undertake. But the day I trusted my instincts and resourcefulness, persevering to save myself, will forever stand out.
*before the day of MRIs. In fact, I was in the first MRIs developed. And I made the AMA for being the first person whose spinal fluids were tracked down the chord. (That was another awful day. They said the test would be two hours. After four, they kept saying 'Just a little longer...' I finally started yelling and moving around so they had to let me go. If they'd have been straight with me, I might have held out longer, but four hours is an awfully long time to spend in a dark tube....) I get them so often now, I just go to sleep and imagine the noise as the sound of Native American drumming....
So 'to start at the very beginning...' (do you hear the strains of a Julie Andrews melody in your head welling up now?)
This is an account of how I diagnosed myself with a brain tumor way back in 1984. Some of this is published in an essay in the summer issue of Survivor's Review.It wasn't until a few years after that I learned I in fact, have a rare cancer. Ignorance in that case, was bliss....
After college, I headed out west and had what I basically think of as my 'gap' year -- I wish someone had told me one is supposed to do this before college; it would have made so much more sense. I would've settled down and gotten better grades. Any hoo, after my two-year jaunt spent basically playing, I decided I'd better actually do something before future employers looked at my resume and chortled. I first went to NYC, but coming from AR and a tiny ski resort in UT, it was not for me. My college boyfriend was working for one of our Senators in DC, so I took the train there, got off, looked around at all the green space and low buildings and (after NYC) noticed a mellow vibe, and thought, now this, I can do.
Because of my meager writing experiences at University and journalism background, I was hired to develop a new magazine for architects along with just two other editors, one of which left after the first issue. So there we were, two woman, one still wet behind the ears (guess who), in a field dominated by men, putting out a male-oriented magazine, Architectural Technology. K. and I were basically in the trenches together. God was it fun. The only sour note was that increasingly over the past 15 months I had started to feel -- weird -- one day I'd be sick to my stomach, the next fine. My fellow workers in the building didn't know me -- when I moved to DC I only knew my boyfriend, so I suspected (and found out for sure later) they thought I was a hypochondriac. Thank god K. knew my work ethic (more importantly, my type-A personality), and she believed with me something was amiss. She was always supportive. Finally I redoubled my efforts to find out what was making me feel so lousy and bone-tired. For three months I went to specialist after specialist. I was hospitalized for shock and let go one night -- they didn't even take tests! I strongly suspected it was a brain tumor when certain things began to go wonky I considered neuro-related......
************************
I’m puking into a white Dixie cup -- the first thing I grabbed when my stomach began to lurch again. The doctor winces in distaste and informs me he can’t find anything wrong:
“Seventy percent of my female patients are psychosomatic,” he tells me.
As if it were perfectly normal for a 24-year-old to be unable to stop retching into a specimen cup in his office.
Two nights ago I was hospitalized for vomiting so much I went into shock, but after being stabilized at emergency, was released. Now I’m back to pursue more answers. I’m really beginning to dislike this doctor, with his closed, smug face, and air of disdain. He had been highly recommended. But I fear his fancy office on Foxhall Road in the swank area of Palisades in D.C., was better suited for people with run-of-the-mill issues. Whatever my problems are, they clearly aren’t easily diagnosable.
We’ve run through various specialists and tests, mostly for stomach disorders.
“I need a CT scan*. I have a brain tumor,” I mumbled, my face close to the Dixie cup.
“What makes you think you have a brain tumor?”
I repeated again what I’ve been reciting at every appointment:
“It’s obviously neurological. I have constant headaches. I’m losing my balance -- falling if I lean over, my handwriting is going; I’m having trouble walking…”
He cut me off:
“You don’t have a brain tumor. Will you go see a psychiatrist?”
“If I do, will you give me a CT scan?”
The session with the shrink was uneventful. As he watched me leave, weaving along the long mirrored hallway towards the front door, he called out, “Are you aware you’re walking sideways?”
I turned back towards him, “Oh, yeah, I have for weeks now.”
When I reached the house, I called my boss and told her I’d be taking a leave of absence until I could find out what was wrong. No doubt tired of seeing me stumble into the office every day wan, pale, and sweating, needing to rest in the ladies’ lounge for most of the day, she readily agreed. My usual routine was to drag myself to the Metro and then to work, drag myself home on the same train – walking many long city blocks each way – and then collapse into bed or onto the nearest couch or chair, where I would fall into a deep, dreamless sleep until waking to what felt like struggling through fathomless dark waters with yards of tightly wrapped cheesecloth around my torso.
My headaches had become dull and constant, so numbing that when anyone talked to me anymore I struggled to understand them, as my thinking grew fuzzier. At times my eyeballs seemed to rattle back and forth in their sockets and I felt a dizziness I could only describe as that of a cartoon character – remember how Sylvester the cat’s eyes and face seemed to spin uncontrollably after Tweetie Bird pounded him on the head with a mallet? This afternoon, however, something made me flop onto the couch and turn on the TV. Dark Victory with Bette Davis was on. I became engrossed in the story. Well, Damn! She had a brain tumor, and I had all the classic symptoms that were mentioned…without waiting to see how the movie turned out, I turned off the set and called for a taxi.
Noting my jogging suit, the driver asked if I’d be running through Rock Creek Park after I gave him general directions.
“No, I’m going to the emergency room at Georgetown Hospital. I have a brain tumor.”
He didn’t speak for the rest of the drive, but did wish me ‘good luck,’ when I climbed out of the cab.
“What’s wrong with you?” said the nurse at reception. When I told her, she looked at me like I was either prescient, or would shortly be escorted to the psych ward.
An intern came down and looked into my eyes with a flashlight thingy.
I finally got my CT scan.
As I was lying on a hospital bed several hours later, the intern came in and grabbed my hand.
“You’re right; you have a brain tumor.”
I’d have an operation on Monday – this was Friday – and the chief of neurology would be performing it himself, he said. I would be in good hands. They would admit me right away and keep me over the weekend to stabilize me.
The news was vindication for the past 18 months I’d spent trying to convince different specialists I was ill; coworkers who mumbled under their breath that perhaps I was a hypochondriac; a boyfriend who said that living with me was “like living with an 80-year old;” and doctors who said “when they see hoof prints, they think of horses, not zebras.”
I was relieved. I had secretly worried I had leukemia, which had killed my paternal grandfather as a young adult. I didn’t consider this brain tumor life threatening. They’d take it out and I’d be okay. I didn’t understand why my boyfriend broke down and started to cry, or why he wanted to call my parents.
“Let’s wait and tell them after the operation, when I’m okay.”
He thought this an absurd idea, and called them himself.
Horrified, they flew up the next day. My equal parts naiveté and strength served me well. I sailed through the operation. Because I couldn’t be admitted without listing a primary doctor, I had put down the absolutely ineffectual doctor. So every day for four days after the surgery, he popped his head through the door of my room, calling out “How ya doing today? Feeling better?” I’d turn my head to the wall and ignore him. I was gratified to see my surgeon turn on his heel and brush his inquiries off, pushing past him as if avoiding a pesky panhandler.
Later I got a bill in the mail for $400 – he had charged $100 for every time he stuck his head in the room for less than a minute. I immediately called his office and said while I should report him for medical malpractice, I was tired and needed to concentrate on my recovery, and if I never heard from him again I wouldn’t call the AMA. In retrospect I should have, though, as I have no doubt he’s busily misdiagnosing people to this day.
It was nine years before I had the symptoms of another brain tumor. This time, when the neurologist in the new city where I was living said he’d “stake his medical profession on the fact I didn’t have another brain tumor,” I just looked at him like I couldn’t believe anyone could be that obtuse. And told him to give me an MRI that afternoon.
On that fateful day 24 years ago, I learned to take my intuition for granted and to listen to my inner voice. That I was the only one who knew what was ‘normal’ for me better than anyone else. I wish I could say that from that day on I have always acted on this knowledge. Unfortunately, it has taken a few more medical crises before I finally learned the hard way to master the art of taking myself seriously.
After a half-dozen incidents where not following through on my intuition has resulted in serious medical consequences, today if I meet a medical professional who dismisses me in any way, I quickly leave and find another who will work as a member of my medical team. When your life is on the line, you can’t afford not to be vigilant and proactive. I’ve been walking the journey of a survivor of a rare cancer ever since – having finally been diagnosed with von Hippel-Lindau disease, and having undergone 10 of the most difficult surgeries anyone could undertake. But the day I trusted my instincts and resourcefulness, persevering to save myself, will forever stand out.
*before the day of MRIs. In fact, I was in the first MRIs developed. And I made the AMA for being the first person whose spinal fluids were tracked down the chord. (That was another awful day. They said the test would be two hours. After four, they kept saying 'Just a little longer...' I finally started yelling and moving around so they had to let me go. If they'd have been straight with me, I might have held out longer, but four hours is an awfully long time to spend in a dark tube....) I get them so often now, I just go to sleep and imagine the noise as the sound of Native American drumming....
Sunday, November 8, 2009
Highway to Heaven
Today's obits contained a jewel:
....."let us imagine Ms. Poncy Petwueey*, trying to out-run Jesus on a golden Harley on the highway to heaven ..."
That's one drag race worth watching.....
*What? You thought I'd use her real name??
....."let us imagine Ms. Poncy Petwueey*, trying to out-run Jesus on a golden Harley on the highway to heaven ..."
That's one drag race worth watching.....
*What? You thought I'd use her real name??
the London Invasion
I received a few comments on my questionnaire when I responded that 'London' was one place I could return to over and over again. I thought I'd explain my reasons for such a personal connection to it. I grew up believing 'The Beatles' were the greatest band ever, and then there was the invasion of all the other British bands I enjoyed...I shared with my grandmother a fascination with English history, the past Queens of England in particular...while growing up, in general, it seemed a swinging, with-it destination.
When I met Excy he had just finished remodeling a town house on Sloane Square in London for a client from Texas, and had lots of fun stories about his trips to oversee construction. He became friends with H., and when she learned of our impending marriage she offered the flat to us for our honeymoon. We decided to take a delayed honeymoon in January (we were married in June '91) because of our work schedules. By the time we went, I was freelancing, having quit the magazine, and a lucrative book contract came up three weeks before the departure date I could not afford to turn down. So we went, taking about an extra 30 lbs of paper and notes, and I edited a book for several hours each day we were there. But the weather was splendid, we hit all the museums, theater, shopping, sites, and I satisfied my love for all the 'high tea' (yes I know that's not right) that we could ever want, generally having a blast. The very last day we were socked in by fog at Heathrow and the eventual drama of getting out the next day and the commute was a nightmare and pretty funny looking back on it, but it didn't taint the experience at all -- it was all I had hoped for.
When H. heard I had had to work while there she insisted we return the next January for another week. By this time we had moved to AR (or as Excy thinks of it, Hooterville) so I could take a position with Winrock International, then located on Petit Jean Mountain. And now, as Excy likes to interject in the story: She asked her parents to come with us! In my defense, every couple had their own floor, and we shared the bottom level where the kitchen, dining room and living area were located.
Also, we had been together for three years by then, so we could master self-control. Plus, I didn't know how many years my parents would be able to or want to travel such a long distance for a vacation. Excy's pet peeve is really that my parents and I never mastered jet lag and we all slept in -- but I hasten to add here that two weeks after our return I was diagnosed with my second brain tumor, so I had a damn good excuse for sleeping a lot.
We still had great fun and I have the pictures to prove it, regardless of what he says...!
When I met Excy he had just finished remodeling a town house on Sloane Square in London for a client from Texas, and had lots of fun stories about his trips to oversee construction. He became friends with H., and when she learned of our impending marriage she offered the flat to us for our honeymoon. We decided to take a delayed honeymoon in January (we were married in June '91) because of our work schedules. By the time we went, I was freelancing, having quit the magazine, and a lucrative book contract came up three weeks before the departure date I could not afford to turn down. So we went, taking about an extra 30 lbs of paper and notes, and I edited a book for several hours each day we were there. But the weather was splendid, we hit all the museums, theater, shopping, sites, and I satisfied my love for all the 'high tea' (yes I know that's not right) that we could ever want, generally having a blast. The very last day we were socked in by fog at Heathrow and the eventual drama of getting out the next day and the commute was a nightmare and pretty funny looking back on it, but it didn't taint the experience at all -- it was all I had hoped for.
When H. heard I had had to work while there she insisted we return the next January for another week. By this time we had moved to AR (or as Excy thinks of it, Hooterville) so I could take a position with Winrock International, then located on Petit Jean Mountain. And now, as Excy likes to interject in the story: She asked her parents to come with us! In my defense, every couple had their own floor, and we shared the bottom level where the kitchen, dining room and living area were located.
Also, we had been together for three years by then, so we could master self-control. Plus, I didn't know how many years my parents would be able to or want to travel such a long distance for a vacation. Excy's pet peeve is really that my parents and I never mastered jet lag and we all slept in -- but I hasten to add here that two weeks after our return I was diagnosed with my second brain tumor, so I had a damn good excuse for sleeping a lot.
We still had great fun and I have the pictures to prove it, regardless of what he says...!
Saturday, November 7, 2009
A Southern Primer
I once dated an architect from NY when I was living in DC. He was NY born and reared. When I asked him where he went when he wanted to get outside and away from it all, he looked slightly horrified. "Away? I have Central Park..." was his utterly puzzled reply. He was intrigued by all things Southern: William Faulkner, Willa Cather, the 'deep South,' and my Southern accent.
I tried to explain AR isn't considered part of the 'deep South,' but he'd just get a glazed look in his eye the way most Northerners do when a Southerner talks about things south of the Mason-Dixon line. They have their preconceived notions. Right after you start speaking, they glance at your feet instinctively to see if you're wearing shoes. Seriously, I swear it happens. Then they mock your accent, or gently make fun of it somehow. Little realizing their accent is just as distinctive. After 14 years away from the South, living out west and then east, I considered my accent mild, but whenever I opened my mouth someone who didn't know me would make a comment. Mostly derogatory. I didn't bother to comment on their accent, but truthfully I prefer a southern drawl* to a sharp- pitched nasal twang. One art director I worked with at a magazine was also from NY. One time she actually said, "Yu know you're a smatt gurlll, but yu really need to looss your accent or people will think you're stupid." Only she said it very quickly, about the speed of light. I paused for dramatic effect and channeled Tulullah Bankhead and in my best drawn-out Southern drawl purred, "Wallll, yo husssband doesn't myind maa accent......" She fumed. And to his credit, he turned beet-red, which further pissed her off.
Any hoo, said architect did a few annoying things a boy reared correctly in the South would never do,** chief among them was to put me on a bus at the end of one date in the pouring rain, to find my way back to my hotel, in which I had to walk a block from the bus stop, thus soaking a new pair of Ann Taylor suede pumps. As the doors were closing, he actually said a lot of his friends considered him to be just like a courtly Southern gentlemen, or at least as they imagined one would act. I smiled gently back and just as the doors shut told him that he would never be mistaken for a Southerner.
*An authentic Southern accent is hard to 'do' -- most non-Southern actors trying to speak in a Southern accent sound horrid. Surprisingly, the actors born overseas do a far better job!
**A Southern gentleman never stands up a lady on a date - that is a woman's prerogative.
He never allows a lady to pay on the first few dates -- especially the first date -- regardless of whether she asked him out.
He walks on the outside of a sidewalk, opens doors and car doors, and half stands when she leaves the table or comes back to the table.
He doesn't answer cell phones or texts while he's with his date (unless it's an emergency or the POTUS calling).
He most certainly doesn't ogle other women.
He doesn't wear a hat inside.
These are sacrosanct. All the rest you figure out as you go along.....
I tried to explain AR isn't considered part of the 'deep South,' but he'd just get a glazed look in his eye the way most Northerners do when a Southerner talks about things south of the Mason-Dixon line. They have their preconceived notions. Right after you start speaking, they glance at your feet instinctively to see if you're wearing shoes. Seriously, I swear it happens. Then they mock your accent, or gently make fun of it somehow. Little realizing their accent is just as distinctive. After 14 years away from the South, living out west and then east, I considered my accent mild, but whenever I opened my mouth someone who didn't know me would make a comment. Mostly derogatory. I didn't bother to comment on their accent, but truthfully I prefer a southern drawl* to a sharp- pitched nasal twang. One art director I worked with at a magazine was also from NY. One time she actually said, "Yu know you're a smatt gurlll, but yu really need to looss your accent or people will think you're stupid." Only she said it very quickly, about the speed of light. I paused for dramatic effect and channeled Tulullah Bankhead and in my best drawn-out Southern drawl purred, "Wallll, yo husssband doesn't myind maa accent......" She fumed. And to his credit, he turned beet-red, which further pissed her off.
Any hoo, said architect did a few annoying things a boy reared correctly in the South would never do,** chief among them was to put me on a bus at the end of one date in the pouring rain, to find my way back to my hotel, in which I had to walk a block from the bus stop, thus soaking a new pair of Ann Taylor suede pumps. As the doors were closing, he actually said a lot of his friends considered him to be just like a courtly Southern gentlemen, or at least as they imagined one would act. I smiled gently back and just as the doors shut told him that he would never be mistaken for a Southerner.
*An authentic Southern accent is hard to 'do' -- most non-Southern actors trying to speak in a Southern accent sound horrid. Surprisingly, the actors born overseas do a far better job!
**A Southern gentleman never stands up a lady on a date - that is a woman's prerogative.
He never allows a lady to pay on the first few dates -- especially the first date -- regardless of whether she asked him out.
He walks on the outside of a sidewalk, opens doors and car doors, and half stands when she leaves the table or comes back to the table.
He doesn't answer cell phones or texts while he's with his date (unless it's an emergency or the POTUS calling).
He most certainly doesn't ogle other women.
He doesn't wear a hat inside.
These are sacrosanct. All the rest you figure out as you go along.....
Friday, November 6, 2009
Fabulous Finds Friday
Welcome to FFF, where every Friday I intend to unveil a product I highly recommend. My SIL actually prompted me to do this -- she thinks my entire blog should be devoted to it, as I am the Product Queen. I used to write a beauty column for a local magazine, since folded, but wayyyyyy before that I've been a 'product hound,' so this is second nature to me.
NOTE: I am not getting paid to blog about anything, and have no contact whatsoever with any manufacturers or companies to recommend this stuff -- I heard about the controversy -- so, no fear I am promoting stuff with any self-interest in mind.
There'll be no rhyme or reason to the choices, no particular rating, just stuff I have used forever or new product I have discovered. I try to purge or toss product before it expires, but in the case of this stuff, I'm replacing it before it goes bad. So, these are all things that work great for me, and I hope you give them a try and are pleased to discover they do for you as well.
I am running ragged today, having asked friends over for dinner tonight and needing to get ready -- like clean the house and prep the food and make dessert -- so, although in the future I intend to photograph what I can, today isn't the day to fuss with that, so sorry, no photograph of the first thing I grabbed off the dressing table:
BACH 'Rescue Remedy.' Comes in a cheery little yellow box.
This is a homeopathic natural stress relief -- it contains 27% alcohol, but more importantly it has original flower essences in it, and it tastes lovely. Put a few drops on your tongue and go out and face the day calmer and more grounded. I prefer the liquid, but there is also a spray version I keep in my purse or car for quick spritzing when I feel frazzled or have to do something that makes me a little 'out of my element,' like before a doctor appt., public speaking, or facing a room of people...
It can be found in the organics section of most whole food stores or groceries and places like that.
I've been using it for a decade.
NOTE: I am not getting paid to blog about anything, and have no contact whatsoever with any manufacturers or companies to recommend this stuff -- I heard about the controversy -- so, no fear I am promoting stuff with any self-interest in mind.
There'll be no rhyme or reason to the choices, no particular rating, just stuff I have used forever or new product I have discovered. I try to purge or toss product before it expires, but in the case of this stuff, I'm replacing it before it goes bad. So, these are all things that work great for me, and I hope you give them a try and are pleased to discover they do for you as well.
I am running ragged today, having asked friends over for dinner tonight and needing to get ready -- like clean the house and prep the food and make dessert -- so, although in the future I intend to photograph what I can, today isn't the day to fuss with that, so sorry, no photograph of the first thing I grabbed off the dressing table:
BACH 'Rescue Remedy.' Comes in a cheery little yellow box.
This is a homeopathic natural stress relief -- it contains 27% alcohol, but more importantly it has original flower essences in it, and it tastes lovely. Put a few drops on your tongue and go out and face the day calmer and more grounded. I prefer the liquid, but there is also a spray version I keep in my purse or car for quick spritzing when I feel frazzled or have to do something that makes me a little 'out of my element,' like before a doctor appt., public speaking, or facing a room of people...
It can be found in the organics section of most whole food stores or groceries and places like that.
I've been using it for a decade.
Thursday, November 5, 2009
Over the Top
Thank you, Glamaray, for your lovely 'over the top' award...As I told Ms 'Ray, it makes me feel just like Sally "You like me! You really like meeee" Fields! I now get to pass this along, as the rules are you pass it, tell the people you pass it to to post it with your blog address, and for them to pass it along and take the quiz below using only one word answers......hard for one as verbose as I....
Where is your cell phone? Car
Your hair? Long
Your mother? Delightful
Your dad? Sleeping
Your favorite food? Seafood
Dream last night? Quirky
Favorite drink? Margarita
Goal? Publish
What room are you in? Library
Hobby? Many
Fear? Sometimes
Where do you want to be in 6 years? Healthy
Something you aren't? Bigoted
Muffins? Yes
Wish List? Always
Where did you grow up? Arkansas
Last thing you did? Acupuncture
What were you wearing? Sheet
Your TV? Off
Your pets? Many
Friends? Wonderful
Your life? Interesting
Your mood? Amused
Missing someone? Yes
Vehicle? Vibe
Something you're not wearing? Hat
Favorite color? Blue
Last time you laughed? Minutes
Last time you cried? Months
Best friend? Fortunately
Place you could go over and over? London
Person who em's regularly? Jennifer
Favorite place to eat? BossaNova
So....I hereby pass this along to:
Krowe over at Letter from Joshua, who always has interesting things to say.
E. at wrestling with retirement for being a fun read.
And to D, at stroke of living for her insight.
You Wore What?!
I read where one of the biggest costume fads of Halloween '09 was to dress from the 1970s.
Having actually lived through the '70s (I graduated high school in 1976) -- I gotta tell you, people, I cringed.
I remember at my 10th high school reunion looking around the room and thinking I didn't go to school with any of these people -- they were all (mostly) well-dressed and looked great. Then I spied the photo wall. Oh yeah...the boys had kinky or stringy hair past their shoulders or over the top Afros with picks in their hair, girls in middies or maxis, other fashions over the top: Elephant bell pants, garish plaids or checks, paisley, poly-rayon shirts with long pointed collars, ties so wide they could double as place mats, double-breasted suits...garish, awful...shudder...the only thing I don't mind seeing again are wedged shoes.
This was the disco-era, people. Saturday Night Fever. The Bee-Gees. ABBA. We wore pants suits (guilty!) and danced in formation under disco balls in black-lighted rooms. I tell you, no class. Though, one of my more mature boyfriends (he was a Senior and I a Sophomore) was a sharp dresser. As awful as it sounds, he looked (super) fly in a silver lame jacket with black satin shoes with two inch stacked-heels, and black satin shirt and pants to the Prom. Bet he wishes he had kept that outfit.
I envied the boomers before us. The ones who grew up in the hippy era of the '60s. Who danced to full on rock bands*, maybe went to Woodstock, saw Jimi and Janice in person. ** The youth movement was in full force, seeming vibrant and with-it, mostly due to the fact there were just too damn many of them to ignore...
We were at the tail end of that era. In some ways after the drama of the '60s, the '70s seemed downright tame in some respects. But we did usher in a new irony to the world view, women's and equal rights were on more solid footing, we witnessed Watergate and the power of the people, Nixon's resignation (finally), the end of the Vietnam war...and some of the most fabulous TV and movies ever...So it wasn't all bad, I guess...
* "classic" rock -- my favorite...
**Excy was a teen in NY looking for something to do when visiting his Uncle and Aunt when he walked into a little dive called the Cafe Waa and listened to an un-yet known Jimi Hendrix.....even to a cowboy from Prescott, AZ, he recognized talent when he heard it.
If you enjoyed this, you might like to read 'Hair Today, Gone Tomorrow."
Having actually lived through the '70s (I graduated high school in 1976) -- I gotta tell you, people, I cringed.
I remember at my 10th high school reunion looking around the room and thinking I didn't go to school with any of these people -- they were all (mostly) well-dressed and looked great. Then I spied the photo wall. Oh yeah...the boys had kinky or stringy hair past their shoulders or over the top Afros with picks in their hair, girls in middies or maxis, other fashions over the top: Elephant bell pants, garish plaids or checks, paisley, poly-rayon shirts with long pointed collars, ties so wide they could double as place mats, double-breasted suits...garish, awful...shudder...the only thing I don't mind seeing again are wedged shoes.
This was the disco-era, people. Saturday Night Fever. The Bee-Gees. ABBA. We wore pants suits (guilty!) and danced in formation under disco balls in black-lighted rooms. I tell you, no class. Though, one of my more mature boyfriends (he was a Senior and I a Sophomore) was a sharp dresser. As awful as it sounds, he looked (super) fly in a silver lame jacket with black satin shoes with two inch stacked-heels, and black satin shirt and pants to the Prom. Bet he wishes he had kept that outfit.
I envied the boomers before us. The ones who grew up in the hippy era of the '60s. Who danced to full on rock bands*, maybe went to Woodstock, saw Jimi and Janice in person. ** The youth movement was in full force, seeming vibrant and with-it, mostly due to the fact there were just too damn many of them to ignore...
We were at the tail end of that era. In some ways after the drama of the '60s, the '70s seemed downright tame in some respects. But we did usher in a new irony to the world view, women's and equal rights were on more solid footing, we witnessed Watergate and the power of the people, Nixon's resignation (finally), the end of the Vietnam war...and some of the most fabulous TV and movies ever...So it wasn't all bad, I guess...
* "classic" rock -- my favorite...
**Excy was a teen in NY looking for something to do when visiting his Uncle and Aunt when he walked into a little dive called the Cafe Waa and listened to an un-yet known Jimi Hendrix.....even to a cowboy from Prescott, AZ, he recognized talent when he heard it.
If you enjoyed this, you might like to read 'Hair Today, Gone Tomorrow."
Tuesday, November 3, 2009
Can't Get More 'Southern' Than That...
A sharp-eyed friend sent me this obit she spied in our local paper, knowing my love for the irregular ones...it's one of the best I have read...kudos to her woman's family for writing it....I am using her real name, it's so fitting...
Dorothy Viola Southern, formerly of xxx, passed away xxx on xxxx. ....(her children) are glad that she died peacefully and not in a shoot-out. Undoubtedly, she was quite a character, feisty, passionate, out-spoken, and known for her many shenanigans in her 83 years. In spite of her nine marriages and mostly turbulent life, Mom was a dedicated conscientious mother to her five children.
Born xxx to xxx, she married at the age of 13, had two children by the age of 16, was a jack of all trades, and lived in 12 states before she died. She was most proud of her career modeling shoes with her tiny size-4 foot.*
Her children never ceased to marvel at her tenacity, work ethic, ingenuity, and sense of humor that she kept throughout it all. Unfortunately she never learned the art of contentment or anger management which she desperately needed. But, understandably, she got off to a rocky start and never had a fair chance.
She sincerely delighted in (well, except sometimes when she was living near them), her 11 grandchildren...She also had four great-grandchildren who are familiar with the urban legend of their crazy grandmother...Almost to the end she was still making people laugh, cussing people out, and looking for the perfect husband.
*do hope she had more than one...
Can't ask for anything better than that......
Dorothy Viola Southern, formerly of xxx, passed away xxx on xxxx. ....(her children) are glad that she died peacefully and not in a shoot-out. Undoubtedly, she was quite a character, feisty, passionate, out-spoken, and known for her many shenanigans in her 83 years. In spite of her nine marriages and mostly turbulent life, Mom was a dedicated conscientious mother to her five children.
Born xxx to xxx, she married at the age of 13, had two children by the age of 16, was a jack of all trades, and lived in 12 states before she died. She was most proud of her career modeling shoes with her tiny size-4 foot.*
Her children never ceased to marvel at her tenacity, work ethic, ingenuity, and sense of humor that she kept throughout it all. Unfortunately she never learned the art of contentment or anger management which she desperately needed. But, understandably, she got off to a rocky start and never had a fair chance.
She sincerely delighted in (well, except sometimes when she was living near them), her 11 grandchildren...She also had four great-grandchildren who are familiar with the urban legend of their crazy grandmother...Almost to the end she was still making people laugh, cussing people out, and looking for the perfect husband.
*do hope she had more than one...
Can't ask for anything better than that......
Monday, November 2, 2009
Misc....
Mom discovered my blog and read 'Driving Skills' from September. She said I forgot to mention the funniest line, which (to her) was when she told me she was considering getting a car, and I replied that it'd better be made of rubber. Hummm....
In People magazine, I learned the singer Usher called 911 when his car was keyed (he blamed his soon-to-be-ex-wife). I'm pretty sure you don't call 911 when your car gets keyed. Maybe 411 - if you're Usher. His imminent ex says she got tons of flack for being "So much older" than he is. Yeah, all of seven years! That's such a disgrace. Men have married much younger woman than that for centuries and no one bats an eye -- weird...and what about this so-called 'cougar' epidemic? Doesn't jibe...
Mom told me dad packed frozen dinners in his suitcase for his 3 days to DC. Surely you jest. I cannot believe he did this. For one they'd be totally unthawed and ***eeewwwwww*** by the time he arrives at the hotel, and I'm pretty sure uneatable. My brother says that must be why it took forever for dad to get through the airport security line -- they must have been trying to figure out what to do with that frozen food in his carry-on. (Hopefully they confiscated it). He borrowed my rolling suitcase for the trip. Gross.
In People magazine, I learned the singer Usher called 911 when his car was keyed (he blamed his soon-to-be-ex-wife). I'm pretty sure you don't call 911 when your car gets keyed. Maybe 411 - if you're Usher. His imminent ex says she got tons of flack for being "So much older" than he is. Yeah, all of seven years! That's such a disgrace. Men have married much younger woman than that for centuries and no one bats an eye -- weird...and what about this so-called 'cougar' epidemic? Doesn't jibe...
Mom told me dad packed frozen dinners in his suitcase for his 3 days to DC. Surely you jest. I cannot believe he did this. For one they'd be totally unthawed and ***eeewwwwww*** by the time he arrives at the hotel, and I'm pretty sure uneatable. My brother says that must be why it took forever for dad to get through the airport security line -- they must have been trying to figure out what to do with that frozen food in his carry-on. (Hopefully they confiscated it). He borrowed my rolling suitcase for the trip. Gross.
Sunday, November 1, 2009
The Day After
I tried to watch Night of the Living Dead last night ('68 original) -- guess that babysitter has ruined it for me forever - gadzooks - (see post The Scariest Movie Ever) -- had to turn it off!
We had 14 trick-or-treaters -- a first for Wye Mt. I liked 'hell boy' the best.
Today is All Saints Day -- so say a prayer or a blessing for loved ones who have died....
We had 14 trick-or-treaters -- a first for Wye Mt. I liked 'hell boy' the best.
Today is All Saints Day -- so say a prayer or a blessing for loved ones who have died....
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