I'm a clinical trial alumnus who lives with multiple sclerosis, a husband, two dogs and two cats, while diving headlong into menopause. I've been accused of having a potty mouth and am OK with that.
October 19, 2009
Ladies and gentlemen...
...Mr. Leonard Cohen. Performing at the fabulous Fox Theater in Atlanta. Tomorrow night, October 20, 2009. And one of those seats is going to have my butt in it. Absolutely a dream come true for me, kids!
Cleared for takeoff
So, I had my labs redone to see how my WBCs are behaving and if I can restart Fingolimod. Everything is back to where it should be and I can start Fingolimod again on Wednesday, the 21st! Woo-hoo, I have been really missing that little capsule of joy! That means Wednesday is going to be an all day affair at the MS clinic, just like my first first dose was.
October 13, 2009
You boob! [part two]
Okay, this is where it gets funny. It's about a week before my surgery and I get a call from this guy who says he's Dr. S' partner and Dr. S had taken ill, so he is going to do this lumpectomy if it's alright with me, and if I'm not comfortable with that and say no, he would understand. I think I said something to the effect of, "I assume you can cut on anything he can, so I'm fine with you, go ahead." I only asked that he come to pre-op before I'm pumped with meds so I can meet the man who will be cutting on me. He laughingly agreed.
So, day of surgery. My sister-in-law takes me to the hospital where I do all the registration stuff and get a bed in pre-op. A nurse comes in and tells me to go to the radiology department, where another ultrasound is going to be done for the surgeon to use when he goes in. I think they said something about a wire, which will leave a path for the surgeon. Yeah, yeah, OK, whatever, you lost me at "Radiology".
Some of the minutiae here is vague - sorry, it's been a few years - but I'm sure my breast was numbed, the ultrasound machine was moved to the perfect spot the radiologist wanted, and a tech moved in to hold the thing absolutely still so the radiologist could thread a wire through my breast and into the lump. Yikes, right? The description is worse than the actual event was, I promise. What I remember most about this is, I was freezing. Why do they keep hospitals so frigging cold?
So, that's done. A nurse says to me, repeatedly, "DON'T MOVE!" Now come in here, we need to take a couple of pictures." I manage to get up off the table without jarring the EIGHTEEN INCHES of wire hanging out my right breast and shuffle into this other room which contains....you guessed it...a mammography machine. Yes ladies and gentlemen, the breast that just had a wire stuck in it is now going to be flattened like only a mammogram can. While I was standing there, arm up, boob down, I ask the tech, "Does anyone else see the humor in the fact that I am not allowed to bump this wire, but you all are allowed to maneuver it into a mammography machine?!" Apparently, I was in fact the only person who was entertained by the absurdity. Either that, or she was just a cranky bitch who hated her job.
Anyway, she's done with me and can now protect the wire from jostling by....you're not gonna believe this...seriously....you're gonna laugh out loud...taping a Styrofoam coffee cup to the side of my breast with medical tape.
Now, return to pre-op where I regale my sister-in-law with the details of the trip up to radiology. We wait for awhile, so I take my glasses off and close my eyes to nap. After not too long, the curtain to my little area opens, and the. most. beautiful. man. in. the. world. enters and says, "Hello Ms. Pappas, I'm Dr. Knockyoursocksoff, I'll be doing your surgery today. Do you have any questions about anything?" I was abolutely not capable of actual speech, but I'm pretty sure I grunted out a "Nuh-uh" before he said, "OK, let's do this!", turned on his heel and was gone. My sister-in-law and I turned to one another with our mouths hanging open like a couple of fools, right? Then she leans over and whispers in my ear. "I want what you have."
Immediately a nurse comes in holding a piece of paper with two stickers on it - Red means No and Green means Yes - and instructs me to place them on my breasts to prevent the surgeon from cutting the wrong one. Being the smart ass I usually am, and not having learned my lesson with the radiology tech, I said, "EXCUSE ME, but is the Styrofoam cup and wire not enough of a clue?" Yep, she liked that. At least somebody other than me had a sense of humor.
Epilogue to follow, if you care...
So, day of surgery. My sister-in-law takes me to the hospital where I do all the registration stuff and get a bed in pre-op. A nurse comes in and tells me to go to the radiology department, where another ultrasound is going to be done for the surgeon to use when he goes in. I think they said something about a wire, which will leave a path for the surgeon. Yeah, yeah, OK, whatever, you lost me at "Radiology".
Some of the minutiae here is vague - sorry, it's been a few years - but I'm sure my breast was numbed, the ultrasound machine was moved to the perfect spot the radiologist wanted, and a tech moved in to hold the thing absolutely still so the radiologist could thread a wire through my breast and into the lump. Yikes, right? The description is worse than the actual event was, I promise. What I remember most about this is, I was freezing. Why do they keep hospitals so frigging cold?
So, that's done. A nurse says to me, repeatedly, "DON'T MOVE!" Now come in here, we need to take a couple of pictures." I manage to get up off the table without jarring the EIGHTEEN INCHES of wire hanging out my right breast and shuffle into this other room which contains....you guessed it...a mammography machine. Yes ladies and gentlemen, the breast that just had a wire stuck in it is now going to be flattened like only a mammogram can. While I was standing there, arm up, boob down, I ask the tech, "Does anyone else see the humor in the fact that I am not allowed to bump this wire, but you all are allowed to maneuver it into a mammography machine?!" Apparently, I was in fact the only person who was entertained by the absurdity. Either that, or she was just a cranky bitch who hated her job.
Anyway, she's done with me and can now protect the wire from jostling by....you're not gonna believe this...seriously....you're gonna laugh out loud...taping a Styrofoam coffee cup to the side of my breast with medical tape.
Now, return to pre-op where I regale my sister-in-law with the details of the trip up to radiology. We wait for awhile, so I take my glasses off and close my eyes to nap. After not too long, the curtain to my little area opens, and the. most. beautiful. man. in. the. world. enters and says, "Hello Ms. Pappas, I'm Dr. Knockyoursocksoff, I'll be doing your surgery today. Do you have any questions about anything?" I was abolutely not capable of actual speech, but I'm pretty sure I grunted out a "Nuh-uh" before he said, "OK, let's do this!", turned on his heel and was gone. My sister-in-law and I turned to one another with our mouths hanging open like a couple of fools, right? Then she leans over and whispers in my ear. "I want what you have."
Immediately a nurse comes in holding a piece of paper with two stickers on it - Red means No and Green means Yes - and instructs me to place them on my breasts to prevent the surgeon from cutting the wrong one. Being the smart ass I usually am, and not having learned my lesson with the radiology tech, I said, "EXCUSE ME, but is the Styrofoam cup and wire not enough of a clue?" Yep, she liked that. At least somebody other than me had a sense of humor.
Epilogue to follow, if you care...
You boob! [part one]
So I'm reading a new post from one of my favorite bloggers, Jeri. Yes, it's October - Breast Cancer Awareness month for those of you living under a rock - and I never converse on that topic because I don't feel right about talking about that with which I have no experience. However, having always been one of those good girls who does her monthly self-exams and never misses a mammogram, I do have a boob story. And here it is:
In December of 2000 I had my yearly pelvic, pap and mammo visits (or as I like to call them, "poke, scrape and shmush"). My gyno was palpitating my right breast and seemed to be spending a longer than normal time at it. Just when I was about to ask her if she was kneading a biscuit or something, she says, "You have a lump here." My response was something like, "Well, I've never felt anything and I examine myself every month, where....?" She grabs my left hand and puts it to the ten o'clock area of my breast and holy hell, what is THAT?!?
Okay, so now off to the mammogram. I'm one of those women with lumpy breast tissue so I never get a mammogram without also getting an ultrasound, and this day was no different. Between the 934 pictures the tech took and two (!) ultrasounds - one by the technician and one by the radiologist - I was there for probably three hours. Turns out there was an "area of concern" in my left breast as well as the nasty something in my right. Blah, blah, when it was all over I'd had a needle aspiration of a fluid-filled cyst on the left side and a needle biopsy of a mass on the right.
It's funny, but I was so easily able to separate my breasts from myself during all of this. It was like my breasts had become aliens, and what was happening to them was not happening to me. But I digress.
So the radiology report comes back and my gyno calls me and says the mass in my right breast is not cancer but it is a cluster of atypical cells and if I am willing, she'd like the whole thing removed. I am absolutely cool with that, I found a surgeon, had a consult and we set a date for surgery. I can't remember why now, but there was something going on in my life that made me say, "If this isn't an emergency, I need to wait about six weeks," He was stunned, he'd probably never had a breast surgery patient be as cavalier about it as I guess I was. Anyway, it made sense to me at the time.
To be continued and it will get better I promise...
In December of 2000 I had my yearly pelvic, pap and mammo visits (or as I like to call them, "poke, scrape and shmush"). My gyno was palpitating my right breast and seemed to be spending a longer than normal time at it. Just when I was about to ask her if she was kneading a biscuit or something, she says, "You have a lump here." My response was something like, "Well, I've never felt anything and I examine myself every month, where....?" She grabs my left hand and puts it to the ten o'clock area of my breast and holy hell, what is THAT?!?
Okay, so now off to the mammogram. I'm one of those women with lumpy breast tissue so I never get a mammogram without also getting an ultrasound, and this day was no different. Between the 934 pictures the tech took and two (!) ultrasounds - one by the technician and one by the radiologist - I was there for probably three hours. Turns out there was an "area of concern" in my left breast as well as the nasty something in my right. Blah, blah, when it was all over I'd had a needle aspiration of a fluid-filled cyst on the left side and a needle biopsy of a mass on the right.
It's funny, but I was so easily able to separate my breasts from myself during all of this. It was like my breasts had become aliens, and what was happening to them was not happening to me. But I digress.
So the radiology report comes back and my gyno calls me and says the mass in my right breast is not cancer but it is a cluster of atypical cells and if I am willing, she'd like the whole thing removed. I am absolutely cool with that, I found a surgeon, had a consult and we set a date for surgery. I can't remember why now, but there was something going on in my life that made me say, "If this isn't an emergency, I need to wait about six weeks," He was stunned, he'd probably never had a breast surgery patient be as cavalier about it as I guess I was. Anyway, it made sense to me at the time.
To be continued and it will get better I promise...
October 08, 2009
A.D.D. much?
In the past 24 hours, various things - stuff I've witnessed, stuff on TV, stuff that came up in conversations - have occurred that make me think, "Hey, there's a blog topic!" Here's the rub...I forget them within about a half hour. That is damned irritating because a) is it MS making yet another hole in my brain, and b) .....well damn, I've already forgotten what b was.
So right now I'm going to write about my mood and my dogs. And how much my dogs help my mood. I've been reading a lot about MS and depression. Depression is a different thing in different people and I think it can also manifest itself differently in the same person because it is fluid. For example, after the sudden death of my father a few years ago, I got angry. At everything and everyone. I was very aware of what was going on and I took great pains not to take my anger out on friends and family. I internalized it, which made me miserable and I knew needed some counseling. Thank God my employer at the time had good insurance and I was able to hook up with a therapist for a couple of years who really helped me get my head straight. Zoloft helped, too. Things were so good it got to where I was forgetting to take my Zoloft regularly and was still feeling fine, so I just weaned myself off.
Fast forward to the spring of 2008. The Avonex I'd been on since 1998 for MS was starting to majorly disagree with me. The side effects were always there, but I'd found that Celebrex right before the injection had been taking care of the fever and aches. Suddenly, that stopped working, and it was taking two days to recover from the weekly Avonex injection. So, long story that has been well documented here, I enter the Fingolimod study and everything is rosy. Except I find I'm not particularly happy. With anything. I'm not particularly unhappy, but I'm not happy. Great, what the bloody hell am I supposed to do with that??
Speaking of bloody hell, my menstrual life (LOL, menstrual life? WTH is that Anne?) is also changing. I'm still regular calendar-wise, but occasionally an additional bleeding episode appears during the month, my PMS is off the chart and the blood itself is different (yick). My point is, are my moods related to MS or to changing hormones? Since I don't have insurance, gynecologists and psychiatrists are not an option right now. Besides, for hundreds of thousands of years, women have gone through this change of life bullshit without the help of pharmaceuticals. I'm just going to deal. The only thing I can say with confidence is that when I'm short-tempered and weepy, I think it's hormones. The apathy I think is MS. Armed with that belief, I soldier on...
Now, the dogs. Maggie and Little Bo have become my non-prescription mood enhancers. Maggie has this way of sitting down in front of me and gazing intently into my eyes that just melts me. Does she love me as much as her eyes say she does? Sure, probably, but she also knows that look pretty much guarantees a doggy biscuit. She is manipulator extraordinaire, and I don't have a problem giving in to her.
Little Bo is not the manipulator Maggie is. I think he knows we rescued him from a certain death in that stinky kennel and is forever happy and grateful. When he sees me, his tail starts wagging. When he hears my voice, either directed at him or when I'm on the phone, his tail starts wagging. When I get up from this chair after I post this, his tail will start wagging.
It's been said ad nauseum, by bloggers, authors, emails: Probably the purest, truest love anyone can get comes from their dog. Dog spelled backward is god. And if there are no dogs in heaven, I'm not going.
So right now I'm going to write about my mood and my dogs. And how much my dogs help my mood. I've been reading a lot about MS and depression. Depression is a different thing in different people and I think it can also manifest itself differently in the same person because it is fluid. For example, after the sudden death of my father a few years ago, I got angry. At everything and everyone. I was very aware of what was going on and I took great pains not to take my anger out on friends and family. I internalized it, which made me miserable and I knew needed some counseling. Thank God my employer at the time had good insurance and I was able to hook up with a therapist for a couple of years who really helped me get my head straight. Zoloft helped, too. Things were so good it got to where I was forgetting to take my Zoloft regularly and was still feeling fine, so I just weaned myself off.
Fast forward to the spring of 2008. The Avonex I'd been on since 1998 for MS was starting to majorly disagree with me. The side effects were always there, but I'd found that Celebrex right before the injection had been taking care of the fever and aches. Suddenly, that stopped working, and it was taking two days to recover from the weekly Avonex injection. So, long story that has been well documented here, I enter the Fingolimod study and everything is rosy. Except I find I'm not particularly happy. With anything. I'm not particularly unhappy, but I'm not happy. Great, what the bloody hell am I supposed to do with that??
Speaking of bloody hell, my menstrual life (LOL, menstrual life? WTH is that Anne?) is also changing. I'm still regular calendar-wise, but occasionally an additional bleeding episode appears during the month, my PMS is off the chart and the blood itself is different (yick). My point is, are my moods related to MS or to changing hormones? Since I don't have insurance, gynecologists and psychiatrists are not an option right now. Besides, for hundreds of thousands of years, women have gone through this change of life bullshit without the help of pharmaceuticals. I'm just going to deal. The only thing I can say with confidence is that when I'm short-tempered and weepy, I think it's hormones. The apathy I think is MS. Armed with that belief, I soldier on...
Now, the dogs. Maggie and Little Bo have become my non-prescription mood enhancers. Maggie has this way of sitting down in front of me and gazing intently into my eyes that just melts me. Does she love me as much as her eyes say she does? Sure, probably, but she also knows that look pretty much guarantees a doggy biscuit. She is manipulator extraordinaire, and I don't have a problem giving in to her.
Little Bo is not the manipulator Maggie is. I think he knows we rescued him from a certain death in that stinky kennel and is forever happy and grateful. When he sees me, his tail starts wagging. When he hears my voice, either directed at him or when I'm on the phone, his tail starts wagging. When I get up from this chair after I post this, his tail will start wagging.
It's been said ad nauseum, by bloggers, authors, emails: Probably the purest, truest love anyone can get comes from their dog. Dog spelled backward is god. And if there are no dogs in heaven, I'm not going.
October 04, 2009
Watch this movie
One of the joys of paying the outrageous cable bill every month is that there are seemingly endless movie channels on it. i am a real documentary hound and love it when I run across one on a gray and rainy Sunday morning. Today, was this (sorry, the link wasn't working so you're gonna have to paste it into your browser) :
http://www.littlemanthemovie.com/home.html
Beautiful, beautiful film. Find it. Rent it. Watch it. Feel it.
http://www.littlemanthemovie.com/home.html
Beautiful, beautiful film. Find it. Rent it. Watch it. Feel it.
My stay-cation
So, the boyfriend is still in NJ dealing with the momma-drama, which - as I suspected - is not at DEFCON 3. His sister needs a xanax. Anyway, this trip has totally been worth his time, because his family has been able to spend the most productive time together than they have in years and are getting all the necessary ducks in a row for their 86 year-old mother's future.
I have had the house to myself for FOUR DAYS now and am simply having a blast. No television on for 24 consecutive hours. No blow-some-shit-up shows on the Military channel. No bang-bang-kill-something shows on the Outdoor channel. Me and the critters are just chilling out. The cat and one of the dogs are both sleeping with me on the bed at night, which hasn't happened in months. This weekend has just been filled with quite peace.
As much as I love the guy, I still struggle with co-habitating, and it's been nearly four years! A long time ago, while on the phone with my grandmother trying to find out if there was something wrong with me that marriage was so unappealing she said, "Maybe you're just not the marrying kind." If I was still in my childbearing years, and had a maternal instinct greater than that of a towel rack, marriage and children might interest me. But, just like everything else in my life, I bloomed late. I was 43 when I met this man, the first relationship I'd had to last over three months. By then I'd already been living alone for over 20 years. My singleness is so much a part of who I am and what makes me me, for better or worse.
Yesterday, we were on the phone and he said he wants to buy me a ring soon. I think I screamed a little. I wonder what the world record is for the longest engagement period...
I have had the house to myself for FOUR DAYS now and am simply having a blast. No television on for 24 consecutive hours. No blow-some-shit-up shows on the Military channel. No bang-bang-kill-something shows on the Outdoor channel. Me and the critters are just chilling out. The cat and one of the dogs are both sleeping with me on the bed at night, which hasn't happened in months. This weekend has just been filled with quite peace.
As much as I love the guy, I still struggle with co-habitating, and it's been nearly four years! A long time ago, while on the phone with my grandmother trying to find out if there was something wrong with me that marriage was so unappealing she said, "Maybe you're just not the marrying kind." If I was still in my childbearing years, and had a maternal instinct greater than that of a towel rack, marriage and children might interest me. But, just like everything else in my life, I bloomed late. I was 43 when I met this man, the first relationship I'd had to last over three months. By then I'd already been living alone for over 20 years. My singleness is so much a part of who I am and what makes me me, for better or worse.
Yesterday, we were on the phone and he said he wants to buy me a ring soon. I think I screamed a little. I wonder what the world record is for the longest engagement period...
October 01, 2009
New pants (whoop-de-frikking-do)
OK so it's been over two months now since I stopped smoking. Yay me and all that, but the more time goes by, the worse the cravings are. So, what am I doing about it? Well, judging from the fact I can no longer button ANY of my slacks or jeans, I am eating. A lot.
So today I accepted the fact that I need to size-up my wardrobe a bit. Not for going out or to work clothes because god knows I don't go anywhere that requires them, but for just some stretchy things. You know, track pants or yoga pants, that type of thing. So I went to Target and found three pairs of yoga-type pants. Black, blue and gray will keep my bottom half covered indefinitely. Size Large, because the Mediums I'd been wearing have been overstressed and it's time to give them a break. You know what a muffin-top is? Well, I've been at 12" pizza dough-top in my Mediums.
Oh, and my new diet? Coffee, water and Cheerios. If that doesn't get some weight off me, I may just have to hurt somebody.
So today I accepted the fact that I need to size-up my wardrobe a bit. Not for going out or to work clothes because god knows I don't go anywhere that requires them, but for just some stretchy things. You know, track pants or yoga pants, that type of thing. So I went to Target and found three pairs of yoga-type pants. Black, blue and gray will keep my bottom half covered indefinitely. Size Large, because the Mediums I'd been wearing have been overstressed and it's time to give them a break. You know what a muffin-top is? Well, I've been at 12" pizza dough-top in my Mediums.
Oh, and my new diet? Coffee, water and Cheerios. If that doesn't get some weight off me, I may just have to hurt somebody.
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