It's been a lovely week of knowing there's no doctor appointments until next week. No test results, no decisions; but a trip to a doctor on Tuesday, one on Thursday, and one (into the city) on Friday.
During the first few days, though, I think I suffered some side effects from the medication that was supposed to be helping me sleep, the Ambien CR (controlled release.) There was the inability to focus, the confusion beyond the "normal" stuff that comes with constant anxiety - beyond, beyond, beyond. It was scary. Finally, late one night I surfed the internet to find lesser-known side effects to the medication. Daytime confusion and muscle pain. Hmmmm......
I added that information to what I already knew, which is that I absorb most all medication slowly in the first place. So after a sleepless night in which I refused to take even one more pill, I went from the internet to the pharmacist, who told me that this formulation is designed to work long-term, and not just over 8 hours of nighttime, but actually into the day! And on top of that, it builds up in your system over time.
Fortunately, my friends and family (YOU) were very understanding during my "temporary insanity."
The darned leg pain is still there, though, and at this point I'm not sure I'm hoping for the Lyme disease returning, a side effect of the Ambien CR (that hasn't worn off yet)or a side effect of my Crestor, which I've stopped taking for now.
I'm hoping that when I see our longtime GP Dr. Eskow and give him my usual amateur diagnosis of having something melodramatically wrong, he will say he doesn't want to make fun of my imagination (which he has to say to me a lot)and that it's a pinched nerve or something. Wow - who'd have thought I'd be hoping for a pinched nerve!
In addition to those people I see on a regular basis, so many others whom I haven't seen in ages are reaching out and offering support. Some of you are recounting your own stories of having gone through this and I thank you especially for sharing. You are sympathetic, knowledgeable, and honest and your advice is invaluable to me.
Thursday, April 29, 2010
Tuesday, April 27, 2010
Monday, Monday
I know, that was yesterday. But a quick recap of a few days past - Saturday, sat around in bed but was very productive. Wrote the annual family letter, processed a few loads of laundry, helped to empty the TiVo's Now Playing list so that nothing gets "deleted" by accident. I know there was more but of course once I finished it, I put it out of my mind.
Yesterday I told one of the teachers that what's going on in my head is like a blackboard that is wiped at regularly, but not cleaned very well. Everything that has been written on it in the last few months is still there, albeit faint and unfocused. I'm just trying hard to pay attention to what was "written" most recently!
Sunday work had a lot of drama, but Sunday afternoon was so much fun. Rod and I went on the Life Long Learning - sponsored eating and walking tour of the Lower East Side, and we met Andrew in the city so he walked with us too. We sampled smoked tofu, pickles, aged parmesan and fresh mozzarella, cannolis, and the best halvah I ever had, for sure. Then left to our own devices we dashed in and out of Economy Candy (so much candy!) and got in line at Katz's Deli for pastrami sandwiches. The "cutter," as they are called, kindly made me a sandwich with somewhat less meat in it (still double what we would make at home) and wrote "Human Size" on it. Too funny!
Monday kicked in at full throttle, wet and rainy. But I learned that our long-awaited awning over the school entrance is to be a reality in time for the new school year, so as I walked out the door last night I looked up (got splatted with rain, thank you very much) and thought that things are really moving forward.
A new twist is pretty constant knee/leg aching, which might be a re-visit of my Lyme's from two years ago or may be yet another novel anxiety symptom. Either way, I'll get over to my fave GP, Dr. Eskow next week for a blood test to get that confirmed or ruled out.
Even though most days I feel like I not only can't get off the starting block, I'm hopping up and down on it, that amount of nervous energy should have me halfway around the world by now. Three doctor appointments next week, so moving forward seems like the only sensible idea.
Yesterday I told one of the teachers that what's going on in my head is like a blackboard that is wiped at regularly, but not cleaned very well. Everything that has been written on it in the last few months is still there, albeit faint and unfocused. I'm just trying hard to pay attention to what was "written" most recently!
Sunday work had a lot of drama, but Sunday afternoon was so much fun. Rod and I went on the Life Long Learning - sponsored eating and walking tour of the Lower East Side, and we met Andrew in the city so he walked with us too. We sampled smoked tofu, pickles, aged parmesan and fresh mozzarella, cannolis, and the best halvah I ever had, for sure. Then left to our own devices we dashed in and out of Economy Candy (so much candy!) and got in line at Katz's Deli for pastrami sandwiches. The "cutter," as they are called, kindly made me a sandwich with somewhat less meat in it (still double what we would make at home) and wrote "Human Size" on it. Too funny!
Monday kicked in at full throttle, wet and rainy. But I learned that our long-awaited awning over the school entrance is to be a reality in time for the new school year, so as I walked out the door last night I looked up (got splatted with rain, thank you very much) and thought that things are really moving forward.
A new twist is pretty constant knee/leg aching, which might be a re-visit of my Lyme's from two years ago or may be yet another novel anxiety symptom. Either way, I'll get over to my fave GP, Dr. Eskow next week for a blood test to get that confirmed or ruled out.
Even though most days I feel like I not only can't get off the starting block, I'm hopping up and down on it, that amount of nervous energy should have me halfway around the world by now. Three doctor appointments next week, so moving forward seems like the only sensible idea.
Friday, April 23, 2010
Testing........Testing.............1, 2, 3
So, the genetic testing came back and I have none of the gene mutations, which I'm assured is good news. (Nice to get something qualified as good news when I see the hospital's number on the caller ID.)That's now a good blood test, a good chest x-ray, and a good genetic test.
Along with the test results, Dr. McIntosh's nurse passed along that I have some decisions to make, and of course she's right. So, I've got an appointment for May 6 with the oncologist I have been to in the past, Dr. Louise Ligresti, to get her up to date and also to listen to her opinion on surgery options. (I have no qualms about mentioning her name here because I know she's good; plus we went through the "medical grapevine" to check her out almost four years ago when I was diagnosed the first time.)
As always, I'll welcome encouragingly good reports on my choices of doctor. If I print someone's name here, it's Rod & I, with the best advice possible, who have made that decision, and it's pretty much a done deal.
We're working on checking out a plastic surgeon for if/when that becomes necessary.
In the meantime, today is Ari's birthday. Happy Birthday, Ari, my now fifteen year-old baby boy <3 So many people on Facebook wished him a happy day before I was even AWAKE this morning. That was great! Anyway, it's an excuse for Italian takeout. (Whose child this is, I do not know. I thought that right along with the eye for expensive things and the inability to make a decision quickly, I and all my children had inherited, from my mother, the desire to eat out as often as possible.)
There's a diet I was inadvertently on four years ago, called the "anxiety diet," during my surgery and radiation therapy. Perhaps you know it. So I'm enjoying the fact that mentioning Italian takeout has made me hungry!
I know rain is in the forecast (literally) for Sunday but it's sunny out right now and the weekend means no doctors to call or who will call me. My doctors are terrific, but TGIF.
Along with the test results, Dr. McIntosh's nurse passed along that I have some decisions to make, and of course she's right. So, I've got an appointment for May 6 with the oncologist I have been to in the past, Dr. Louise Ligresti, to get her up to date and also to listen to her opinion on surgery options. (I have no qualms about mentioning her name here because I know she's good; plus we went through the "medical grapevine" to check her out almost four years ago when I was diagnosed the first time.)
As always, I'll welcome encouragingly good reports on my choices of doctor. If I print someone's name here, it's Rod & I, with the best advice possible, who have made that decision, and it's pretty much a done deal.
We're working on checking out a plastic surgeon for if/when that becomes necessary.
In the meantime, today is Ari's birthday. Happy Birthday, Ari, my now fifteen year-old baby boy <3 So many people on Facebook wished him a happy day before I was even AWAKE this morning. That was great! Anyway, it's an excuse for Italian takeout. (Whose child this is, I do not know. I thought that right along with the eye for expensive things and the inability to make a decision quickly, I and all my children had inherited, from my mother, the desire to eat out as often as possible.)
There's a diet I was inadvertently on four years ago, called the "anxiety diet," during my surgery and radiation therapy. Perhaps you know it. So I'm enjoying the fact that mentioning Italian takeout has made me hungry!
I know rain is in the forecast (literally) for Sunday but it's sunny out right now and the weekend means no doctors to call or who will call me. My doctors are terrific, but TGIF.
Thursday, April 22, 2010
Yes, It Is All About Me..........
So, I've come to the realization that I'm basically now kind of scared, all the time. Maybe it's a lack of a definitive plan, for sure it's the waiting. They're probably one and the same.
I tried giving the fear a specific place to live, like "I'm just afraid about the (possible) chemo," or I'm just afraid about the (definite)anesthesia," but some of you who have had first-person experience with either/both have let me know that neither of those things is as bad, so to speak, as they used to be. (For me "bad" is a euphemism for "risky.")
So far, that strategy is only sort of working. Maybe it's a drawback of our modern-day pride in our ability to multi-task, but it feels harder and harder to distract myself when I'm used to doing a lot of things at once.
My distractions (and by this I mean pleasant and what I woud choose to do instead of being afraid) include:
Time with Rod, watching programs we've TiVo'd (is that a verb?) or shopping (in particular, never can leave BJs or Kohl's with just what was on our list) or that endless task that is called "trying to get rid of some of the stuff (and here you may substitute any other word for "stuff" that works for you) we keep accumulating. Sometimes just sitting and relaxing is pretty awesome. The way I figure it, if you can actually rank just sitting and also throwing out things right along with your other favorite things to do, the common factor and therefore awesome component is actually Rod, not what we're doing. Twenty-five years later, that's a good thing:)
My Three Sons - I think I already mentioned them and I'm thanking them for their (past and present and future) phenomenal support. Two out of three of them drive and one of them cooks from scratch and (with gentle prodding) does laundry. And everyone can read directions, use the microwave and even the "old-fashioned" oven. Nobody like to clean up, and they've come by that honestly and genetically.
Synagogue - My job (running the religious school) and other items - teaching (adults), organizing and assisting with Bar/Bat Mitzvah preparation, choir and bulletin work, lower-level computer troubleshooting. Among the fringe benefits was the opportunity to visit HUC-JIR (NYC branch of the school for Reform Jewish rabbis, cantors & educators) and hear the senior recital of the about-to-be-cantor (Hi Rollin) who's married to our student rabbi (Hi David.) Sat with friends (Hi Faryn) and enjoyed beautiful music. In less than two weeks I'll attend HUC's graduation/ordination/investiture, again in NYC, but at the large, and I'm told beautiful, Temple Emanu-El. Ancillary to my work is my studying - Hebrew grammar, Torah translation/interpretation, plus many other random things I don't remember wanting to know when my childhood Hebrew school teachers might have wanted to teach them to me.
Mario and Luigi - Yes, chinchillas are technically rodents. Too bad. I really adore them and they're soft and completely uncomplicated. The time it takes for them to make a decision (to jump or to chew?) is about a nanosecond and I admire that, although it's not the measured response I've been learning to cultivate as a part of my work.
Screens (i.e. TV & computer)- Let's face it, I'm a terrible example for my children, although I do spend a considerable amount of time reading, too. Food Network, TLC, Discovery Channel, Comedy Central, miscellaneous dramas and sitcoms, stand-up comedy on HBO and even some of Rod's favorites on the History Channel (wander into the room, get absorbed, an hour later you know more than you knew when you walked in.) Then there's the computer - Facebook, Snood, Sudoku, Bejewelled, MLB.com - the Red Sox will be a good recovery-time distraction; better yet if they won more often.....
Jigsaw puzzles - usually not more than 500 pieces; I need to be able to finish within a week or so since frustration is not my best friend on a good day, never mind now!
The Blog - I'm here, you're here. What could be bad?
(You know, that last part sounded good when I wrote it so I'm leaving it there, and I hope it made you smile like it made me smile. And I know that there are, without a doubt, so many people who have a worse prognosis than I do, who don't have good health insurance, or such an amazing, supportive husband and kids and unbelievable circle of friends. But for right now it's about me, and I'm still scared.
I tried giving the fear a specific place to live, like "I'm just afraid about the (possible) chemo," or I'm just afraid about the (definite)anesthesia," but some of you who have had first-person experience with either/both have let me know that neither of those things is as bad, so to speak, as they used to be. (For me "bad" is a euphemism for "risky.")
So far, that strategy is only sort of working. Maybe it's a drawback of our modern-day pride in our ability to multi-task, but it feels harder and harder to distract myself when I'm used to doing a lot of things at once.
My distractions (and by this I mean pleasant and what I woud choose to do instead of being afraid) include:
Time with Rod, watching programs we've TiVo'd (is that a verb?) or shopping (in particular, never can leave BJs or Kohl's with just what was on our list) or that endless task that is called "trying to get rid of some of the stuff (and here you may substitute any other word for "stuff" that works for you) we keep accumulating. Sometimes just sitting and relaxing is pretty awesome. The way I figure it, if you can actually rank just sitting and also throwing out things right along with your other favorite things to do, the common factor and therefore awesome component is actually Rod, not what we're doing. Twenty-five years later, that's a good thing:)
My Three Sons - I think I already mentioned them and I'm thanking them for their (past and present and future) phenomenal support. Two out of three of them drive and one of them cooks from scratch and (with gentle prodding) does laundry. And everyone can read directions, use the microwave and even the "old-fashioned" oven. Nobody like to clean up, and they've come by that honestly and genetically.
Synagogue - My job (running the religious school) and other items - teaching (adults), organizing and assisting with Bar/Bat Mitzvah preparation, choir and bulletin work, lower-level computer troubleshooting. Among the fringe benefits was the opportunity to visit HUC-JIR (NYC branch of the school for Reform Jewish rabbis, cantors & educators) and hear the senior recital of the about-to-be-cantor (Hi Rollin) who's married to our student rabbi (Hi David.) Sat with friends (Hi Faryn) and enjoyed beautiful music. In less than two weeks I'll attend HUC's graduation/ordination/investiture, again in NYC, but at the large, and I'm told beautiful, Temple Emanu-El. Ancillary to my work is my studying - Hebrew grammar, Torah translation/interpretation, plus many other random things I don't remember wanting to know when my childhood Hebrew school teachers might have wanted to teach them to me.
Mario and Luigi - Yes, chinchillas are technically rodents. Too bad. I really adore them and they're soft and completely uncomplicated. The time it takes for them to make a decision (to jump or to chew?) is about a nanosecond and I admire that, although it's not the measured response I've been learning to cultivate as a part of my work.
Screens (i.e. TV & computer)- Let's face it, I'm a terrible example for my children, although I do spend a considerable amount of time reading, too. Food Network, TLC, Discovery Channel, Comedy Central, miscellaneous dramas and sitcoms, stand-up comedy on HBO and even some of Rod's favorites on the History Channel (wander into the room, get absorbed, an hour later you know more than you knew when you walked in.) Then there's the computer - Facebook, Snood, Sudoku, Bejewelled, MLB.com - the Red Sox will be a good recovery-time distraction; better yet if they won more often.....
Jigsaw puzzles - usually not more than 500 pieces; I need to be able to finish within a week or so since frustration is not my best friend on a good day, never mind now!
The Blog - I'm here, you're here. What could be bad?
(You know, that last part sounded good when I wrote it so I'm leaving it there, and I hope it made you smile like it made me smile. And I know that there are, without a doubt, so many people who have a worse prognosis than I do, who don't have good health insurance, or such an amazing, supportive husband and kids and unbelievable circle of friends. But for right now it's about me, and I'm still scared.
Monday, April 19, 2010
You're Up, You're Down
Last night was a great night at Coffeehouse Cantors, lots of wonderful singing, including a few Josh Nelson songs I heard at Biennial and then forgot about. I'm getting out the CD I never listened to but absolutely HAD to buy on the spot in Toronto so am looking forward to that.
And I'm looking forward to our staff meeting. It's quite the crew we've got: (Rabbi & Doctor)Joel Mosbacher, (Cantor)David Perper, Iris Greenberg, & Joan Cohen. Joel & David, probably you worked way too hard for your titles for me to put them in parentheses, but you two are all that and a bag of (Panera) chips; your titles don't even do you justice as far as what kind of incredible talents, teachers and friends you are. And Joan and Iris - if I was missing my mother's sage but no-nonsense advice, you two have stepped in and taken over, and boy do I feel useful around you when it comes to technology! Thank you and thank you and thank you.
Mondays are big (long and full) at BHSS: the staff meeting in the morning seems to immediately lead to religious school.
Although things don't get rolling (i.e. with actual children in the building) until shortly before 4 p.m.,they continue until about 8:45 at night, so Mondays have the potential to be the things you simply can't wait to get to the end of. I feel this way about roller coasters, moving walkways in airports, horror/suspense thriller movies, and all visits to medical and dental facilities.
This is NOT to equate my work, which I love, with a visit to the doctor. (Not usually, anyway.) As a matter of fact, walking into the synagogue building actually makes most things look brighter. It is really my second home, except neater (nobody's fault but mine; I am probably one of the world's worst housekeepers but pretty organized at work.)
So this morning while I put off going to work because it's a long day there, it's quiet here (chinchillas sleep all day) and I know it's time to get a move on because I'm starting to feel scared and in a bit of a panic.
I remember in camp studying for my Junior Lifeguard exam, the definition of panic as a "sudden, unreasoning fear." Now, you see, I've got reasons, so maybe panic is not the right word.
Either way, I know in my head there's nothing to panic about RIGHT THIS MINUTE, and there's lots of good work to occupy my mind - so here we go, Monday, it's sunny outside and my new CD is waiting to be played.
And I'm looking forward to our staff meeting. It's quite the crew we've got: (Rabbi & Doctor)Joel Mosbacher, (Cantor)David Perper, Iris Greenberg, & Joan Cohen. Joel & David, probably you worked way too hard for your titles for me to put them in parentheses, but you two are all that and a bag of (Panera) chips; your titles don't even do you justice as far as what kind of incredible talents, teachers and friends you are. And Joan and Iris - if I was missing my mother's sage but no-nonsense advice, you two have stepped in and taken over, and boy do I feel useful around you when it comes to technology! Thank you and thank you and thank you.
Mondays are big (long and full) at BHSS: the staff meeting in the morning seems to immediately lead to religious school.
Although things don't get rolling (i.e. with actual children in the building) until shortly before 4 p.m.,they continue until about 8:45 at night, so Mondays have the potential to be the things you simply can't wait to get to the end of. I feel this way about roller coasters, moving walkways in airports, horror/suspense thriller movies, and all visits to medical and dental facilities.
This is NOT to equate my work, which I love, with a visit to the doctor. (Not usually, anyway.) As a matter of fact, walking into the synagogue building actually makes most things look brighter. It is really my second home, except neater (nobody's fault but mine; I am probably one of the world's worst housekeepers but pretty organized at work.)
So this morning while I put off going to work because it's a long day there, it's quiet here (chinchillas sleep all day) and I know it's time to get a move on because I'm starting to feel scared and in a bit of a panic.
I remember in camp studying for my Junior Lifeguard exam, the definition of panic as a "sudden, unreasoning fear." Now, you see, I've got reasons, so maybe panic is not the right word.
Either way, I know in my head there's nothing to panic about RIGHT THIS MINUTE, and there's lots of good work to occupy my mind - so here we go, Monday, it's sunny outside and my new CD is waiting to be played.
Saturday, April 17, 2010
Family Ties
I'm pretty sure you all know these people (face it, some of you ARE these people) but I figured if I complain about one of my boys or something (which is inevitable) you should know who they are. I shall try this without embarrassing anyone unduly - a tough trick since everyone seems to have inherited my childhood shyness & sensitivity.
Andrew, just turned 24, Alex, just turned 20, and Ari, about to turn 15. They are, all three, simply terrific, most of the time. As they've gotten older the caring, loyal, loving, genuinely good guys are coming out in force and the infuriating, frustrating, aggravating little boys are not quite so evident. If you're my "friend" on Facebook, you've seen more photos than they would like, but fewer than I would like! Whoever is supposed to be working, is, and whoever is supposed to be in school, is. I know I'm going to be able to count on them.
Rod - we met in February of 1982, he proposed in February of 1984, and we've been married since July of that year. Since he's a guy, all the adjectives (or maybe they're adverbs?) above have, and will, inevitably apply to him at one time or another. But there is simply no way to say how much of his own stuff he set aside to help me, to sit with me, to sit without me in waiting room after waiting room drinking who knows what quality of coffee, reading and working on his laptop. (For those who care, Englewood H & MC has free wi-fi everywhere.)
He's always there to be the oh-so-necessary second set of ears in a doctor visit, and he knows that many times I won't eat before an appointment simply so I can get a BLT from the hospital cafeteria as a little "reward" for getting myself to go in the first place. I know that whatever is coming, he's going to be the strongest one in the room.
Then there's my dad, who still lives on Cape Cod and who spent much of the last 56 years being the rock of the family and chief caretaker for my mom until she passed away in December of '08. He went through this kind of thing twice with her; both times she did the lumpectomy/radiation thing and was fine. He did a lot of research then, so he knows a lot about this too. He reminds me all the time that Mom's stuff was 20 years ago, so I should remember how much progress they've made since then. I wish I could get him to come here to "Joisey" to visit but every time we get to the Cape we invade the beautiful house he lives in and probably he enjoys the quiet when we're not around! Dad has the distinction, among others of having been veterinarian for all of JFK's pets when the Kennedys were in residence in Hyannisport during the Camelot years. To this day, I think that was SO cool, and really you have to agree, no matter which way your politics lean.
Mike and Jon, my brothers, both still live in Mass. also; I won't invade anyone's privacy by giving more information but suffice it to say they're stand-up guys with wonderful wives, J. & M. (if you don't mind my naming you, then I will), and kids I'm proud to call nieces and nephews. (I think it's not a coincidence we each married someone with the same first initial.) Since they're both still up there, they have taken on more than their share of familial burdens, and I am grateful beyond words.
Rod's sister Lindsay and her husband Paul and two boys live in South Bend, Indiana. We only see them a couple of times a year, but they are both incredibly sane and down to earth, blessed with more than a modicum of common sense, which is really, really helpful in times of stress.
Tom and Maggie McVeigh are two of the most lovely, loving,unpretentious and downright fascinating people I've ever met. They spent 28 years living in Japan, raising Rod and his sister and learning everything they could about the culture and the people. They have traveled all over the world and appreciate theater, opera, and all other forms of artistic endeavor. They have great stories from their years abroad and they have never been less than loving and welcoming to me, their daughter-in-law, for over 25 years. They win the "who's unabashedly prouder of these McVeigh boys" competition. (Let's face it, I was never in the running, really.........)
Non-human family members did, for 13 years, include a miniature poodle named Liza who passed away on the 2nd day of my radiation therapy, Valentine's Day, 2007. For now we're fostering Andrew and Jackie's (Andrew's long-suffering and wonderful girlfriend of over 7 years - Hi Jackie!) two male (twin) chinchillas. They're almost 6 months old, named Mario and Luigi, and again, you can find many, many photos on my Facebook page. Almost every night, they have "playtime" which means while their cage is refreshed I get to be a piece of their furniture while they get the run of our back hallway. They run, they jump, they're very soft and they don't need you like cats don't need you. But when you need a smile, watch a chinchilla play. Honest!
My mother, Elaine, is no longer with us but ever-present. I write about her last because I know she would be at once horrified that I am telling "everyone" what's going on in my life and at the same time thrilled because she always complimented my writing and encouraged me to do so. She herself composed the loveliest notes and poems and I'm sure I got that gene from her. In addition to being intensely private, she was really proud of my annual letters (and to those of you now wondering to the computer screen where the heck my annual letter is - it's coming, soon)and so Mom, I hope this is okay with you. The last time around, you were on the other end of the phone telling me to do what I had to do; face it, and get through it. I'm workin' on that.
Andrew, just turned 24, Alex, just turned 20, and Ari, about to turn 15. They are, all three, simply terrific, most of the time. As they've gotten older the caring, loyal, loving, genuinely good guys are coming out in force and the infuriating, frustrating, aggravating little boys are not quite so evident. If you're my "friend" on Facebook, you've seen more photos than they would like, but fewer than I would like! Whoever is supposed to be working, is, and whoever is supposed to be in school, is. I know I'm going to be able to count on them.
Rod - we met in February of 1982, he proposed in February of 1984, and we've been married since July of that year. Since he's a guy, all the adjectives (or maybe they're adverbs?) above have, and will, inevitably apply to him at one time or another. But there is simply no way to say how much of his own stuff he set aside to help me, to sit with me, to sit without me in waiting room after waiting room drinking who knows what quality of coffee, reading and working on his laptop. (For those who care, Englewood H & MC has free wi-fi everywhere.)
He's always there to be the oh-so-necessary second set of ears in a doctor visit, and he knows that many times I won't eat before an appointment simply so I can get a BLT from the hospital cafeteria as a little "reward" for getting myself to go in the first place. I know that whatever is coming, he's going to be the strongest one in the room.
Then there's my dad, who still lives on Cape Cod and who spent much of the last 56 years being the rock of the family and chief caretaker for my mom until she passed away in December of '08. He went through this kind of thing twice with her; both times she did the lumpectomy/radiation thing and was fine. He did a lot of research then, so he knows a lot about this too. He reminds me all the time that Mom's stuff was 20 years ago, so I should remember how much progress they've made since then. I wish I could get him to come here to "Joisey" to visit but every time we get to the Cape we invade the beautiful house he lives in and probably he enjoys the quiet when we're not around! Dad has the distinction, among others of having been veterinarian for all of JFK's pets when the Kennedys were in residence in Hyannisport during the Camelot years. To this day, I think that was SO cool, and really you have to agree, no matter which way your politics lean.
Mike and Jon, my brothers, both still live in Mass. also; I won't invade anyone's privacy by giving more information but suffice it to say they're stand-up guys with wonderful wives, J. & M. (if you don't mind my naming you, then I will), and kids I'm proud to call nieces and nephews. (I think it's not a coincidence we each married someone with the same first initial.) Since they're both still up there, they have taken on more than their share of familial burdens, and I am grateful beyond words.
Rod's sister Lindsay and her husband Paul and two boys live in South Bend, Indiana. We only see them a couple of times a year, but they are both incredibly sane and down to earth, blessed with more than a modicum of common sense, which is really, really helpful in times of stress.
Tom and Maggie McVeigh are two of the most lovely, loving,unpretentious and downright fascinating people I've ever met. They spent 28 years living in Japan, raising Rod and his sister and learning everything they could about the culture and the people. They have traveled all over the world and appreciate theater, opera, and all other forms of artistic endeavor. They have great stories from their years abroad and they have never been less than loving and welcoming to me, their daughter-in-law, for over 25 years. They win the "who's unabashedly prouder of these McVeigh boys" competition. (Let's face it, I was never in the running, really.........)
Non-human family members did, for 13 years, include a miniature poodle named Liza who passed away on the 2nd day of my radiation therapy, Valentine's Day, 2007. For now we're fostering Andrew and Jackie's (Andrew's long-suffering and wonderful girlfriend of over 7 years - Hi Jackie!) two male (twin) chinchillas. They're almost 6 months old, named Mario and Luigi, and again, you can find many, many photos on my Facebook page. Almost every night, they have "playtime" which means while their cage is refreshed I get to be a piece of their furniture while they get the run of our back hallway. They run, they jump, they're very soft and they don't need you like cats don't need you. But when you need a smile, watch a chinchilla play. Honest!
My mother, Elaine, is no longer with us but ever-present. I write about her last because I know she would be at once horrified that I am telling "everyone" what's going on in my life and at the same time thrilled because she always complimented my writing and encouraged me to do so. She herself composed the loveliest notes and poems and I'm sure I got that gene from her. In addition to being intensely private, she was really proud of my annual letters (and to those of you now wondering to the computer screen where the heck my annual letter is - it's coming, soon)and so Mom, I hope this is okay with you. The last time around, you were on the other end of the phone telling me to do what I had to do; face it, and get through it. I'm workin' on that.
Friday, April 16, 2010
The (not really) gory details, and a bit of history
So, back in October of 2006 I was diagnosed with invasive ductal carcinoma, left side, very very early (3 places but only 2mm, 3mm, & 4mm.) I underwent a lumpectomy followed by 7 weeks of radiation therapy and that was that. Nothing found on the sentinel node biopsy, and the form of cancer cell was "tubular" - I kid you not. Turns out it's kind of rare and the least aggressive type it can be.
As a matter of course, there's been one test or another every 6 months. In summer 2008, one false alarm, confirmed false by a surgical biopsy. All quiet on the Western front (so to speak)until my latest MRI, and then a little something was spotted, which was followed up by a fine needle aspiration one week ago. Turns out you get the results of that kind of test immediately, so as I stood there (without Rod as he was still in the waiting room) they told me it "wasn't good" and looked very sad. Not helpful behavior on their part, really. I don't expect saccharine smiles and such, but for heaven's sake, it would have been nice to start up with some "let's work on getting this thing taken care of" kind of talk.
From there Rod and I whisked ourselves over to Dr. McIntosh's office (in the hospital itself) where her nurse Pat met us and sympathized. Left the hospital a little shell-shocked and shaken. It didn't take much to drag up some emotion for singing during the Yom HaShoah program the next night :\
Dr. M. called me later that day to say it was indeed, invasive ductal carcinoma but the size this time was about 1 cm around. Not huge but compared to the last ones, still big, to me at least. She had only a verbal report from pathology, but told me to call her office Monday to make an appointment to talk.
Tuesday at 4:45 promptly Rod & I sat with her until almost 6 while she explained what she thought we should do next. And so we did:
Speed walk to the elevators, down to the basement of the main building to get a blood test - some to be mailed to Calif. for a genetic test and some to stay to test for cancer antibodies (or something like that,) then charge across to the other building to go up to the third floor for a chest xray.
By then it's almost 7 p.m. and I'm anxious to get to the synagogue meeting that starts at 7:30. Despite my dad's warning almost 10 years ago, I do enjoy working behind the scenes at synagogue "politics."
Can I tell you something? The people who work after hours at Englewood Hospital are some of the nicest I've ever met. The phlebotomy guy (drawer of blood)lovely despite the fact he's stuck in the basement of the oldest part of the building. Solicitous, unhurried - the x-ray guy even offered coffee. I felt bad saying no (because by then we wanted to get the heck out of the hospital!)
All this week I've been avoiding called to get the results because frankly I was so sick of bad news I didn't want to ask for any more. The not sleeping set in. Dr. M. called in a prescription for Ambien CR (I've taken it before and I did send an email without realizing it - remember, Elyssa? - and I'll be careful.)
Finally today Rod (my knight in shining armor and a rock and my hero) called them and turns out they had the X-ray, which was clear, and blood test results and everything from that end was normal.
For those in the know, or those with spouses in the know: the CA 27.29 is listed as "in range" at 14 with a reference range of <38 U/mL. I think that means the normal consideration is anything under 38, and mine's 14. So, if the number is low it means the little antibodies aren't out in quantity to fight cancer - am I even close?
Only a sentinel node biopsy will tell for sure if even one cancer cell has leaked out of where they started into the lymph system, but you can't know that until whichever surgery is in my future. For now, though, sitting tight. (Wish I could find out if this one is "tubular" - it would be nice - but for some reason they don't have that information, or I just didn't ask the right person/question.)
Many of you already know most of this, and to you I say, thanks for being a huge part of how I was able to deal with it the last time around. For everyone else, welcome to my head. It's a rather disorganized place but I try to keep it homey with squishy throw pillows and a nice soft rug. Books and computers are everywhere, of course, since all modern folk know these items are NOT mutually exclusive.
Next entry, something more uplifting like the distractions - Facebook Scrabble (want to play?), the chinchilla baby boys who live in a cage three feet from my favorite chair, and my renewed obsession with jigsaw puzzles (they are clearly some kind of therapy!)
For now, listening to the Red Sox win one, maybe, and waiting to go back out at 11 p.m. to pick up Ari from his friend's sweet 16 party. Tonight we took Alex out to dinner to celebrate his being elected as president of the Montclair State University Gamers - a Student Government Association - funded and sanctioned club on campus, like fraternities but just a little geekier:) Life goes on, ya know?
As a matter of course, there's been one test or another every 6 months. In summer 2008, one false alarm, confirmed false by a surgical biopsy. All quiet on the Western front (so to speak)until my latest MRI, and then a little something was spotted, which was followed up by a fine needle aspiration one week ago. Turns out you get the results of that kind of test immediately, so as I stood there (without Rod as he was still in the waiting room) they told me it "wasn't good" and looked very sad. Not helpful behavior on their part, really. I don't expect saccharine smiles and such, but for heaven's sake, it would have been nice to start up with some "let's work on getting this thing taken care of" kind of talk.
From there Rod and I whisked ourselves over to Dr. McIntosh's office (in the hospital itself) where her nurse Pat met us and sympathized. Left the hospital a little shell-shocked and shaken. It didn't take much to drag up some emotion for singing during the Yom HaShoah program the next night :\
Dr. M. called me later that day to say it was indeed, invasive ductal carcinoma but the size this time was about 1 cm around. Not huge but compared to the last ones, still big, to me at least. She had only a verbal report from pathology, but told me to call her office Monday to make an appointment to talk.
Tuesday at 4:45 promptly Rod & I sat with her until almost 6 while she explained what she thought we should do next. And so we did:
Speed walk to the elevators, down to the basement of the main building to get a blood test - some to be mailed to Calif. for a genetic test and some to stay to test for cancer antibodies (or something like that,) then charge across to the other building to go up to the third floor for a chest xray.
By then it's almost 7 p.m. and I'm anxious to get to the synagogue meeting that starts at 7:30. Despite my dad's warning almost 10 years ago, I do enjoy working behind the scenes at synagogue "politics."
Can I tell you something? The people who work after hours at Englewood Hospital are some of the nicest I've ever met. The phlebotomy guy (drawer of blood)lovely despite the fact he's stuck in the basement of the oldest part of the building. Solicitous, unhurried - the x-ray guy even offered coffee. I felt bad saying no (because by then we wanted to get the heck out of the hospital!)
All this week I've been avoiding called to get the results because frankly I was so sick of bad news I didn't want to ask for any more. The not sleeping set in. Dr. M. called in a prescription for Ambien CR (I've taken it before and I did send an email without realizing it - remember, Elyssa? - and I'll be careful.)
Finally today Rod (my knight in shining armor and a rock and my hero) called them and turns out they had the X-ray, which was clear, and blood test results and everything from that end was normal.
For those in the know, or those with spouses in the know: the CA 27.29 is listed as "in range" at 14 with a reference range of <38 U/mL. I think that means the normal consideration is anything under 38, and mine's 14. So, if the number is low it means the little antibodies aren't out in quantity to fight cancer - am I even close?
Only a sentinel node biopsy will tell for sure if even one cancer cell has leaked out of where they started into the lymph system, but you can't know that until whichever surgery is in my future. For now, though, sitting tight. (Wish I could find out if this one is "tubular" - it would be nice - but for some reason they don't have that information, or I just didn't ask the right person/question.)
Many of you already know most of this, and to you I say, thanks for being a huge part of how I was able to deal with it the last time around. For everyone else, welcome to my head. It's a rather disorganized place but I try to keep it homey with squishy throw pillows and a nice soft rug. Books and computers are everywhere, of course, since all modern folk know these items are NOT mutually exclusive.
Next entry, something more uplifting like the distractions - Facebook Scrabble (want to play?), the chinchilla baby boys who live in a cage three feet from my favorite chair, and my renewed obsession with jigsaw puzzles (they are clearly some kind of therapy!)
For now, listening to the Red Sox win one, maybe, and waiting to go back out at 11 p.m. to pick up Ari from his friend's sweet 16 party. Tonight we took Alex out to dinner to celebrate his being elected as president of the Montclair State University Gamers - a Student Government Association - funded and sanctioned club on campus, like fraternities but just a little geekier:) Life goes on, ya know?
So Now What?
First things first -
This blog is for all who wish me well (duh, why would I care to inform those who don't?) and, as you can see, is turning into a place for me to "think out loud." I can't believe how much it's already helped, and since that's the point, I hope you don't mind if not every word is a pearl of informative medical wisdom or deep look into my psyche - this is me and that's the way it is. (You might even hear from my snarky evil twin; I let her type once in a while because she's fun at parties.)
To all who read and have (or think they have!) some medical knowledge: I am happy to have informed advice. Please understand that I already have a breast surgeon who is the chief of Breast Surgery at Englewood Hospital and Medical Center. Her name is V. Merle McIntosh (the "V" stands for Violet, which tickles me, somehow) and she has taken very good care of me thus far. If you personally know or have heard something TERRIFIC about her, PLEASE SHARE! If you have FIRST-HAND experience that you think should cause me to seek a 2d opinion - please make darned sure your info is accurate before telling me about it.
This blog is for all who wish me well (duh, why would I care to inform those who don't?) and, as you can see, is turning into a place for me to "think out loud." I can't believe how much it's already helped, and since that's the point, I hope you don't mind if not every word is a pearl of informative medical wisdom or deep look into my psyche - this is me and that's the way it is. (You might even hear from my snarky evil twin; I let her type once in a while because she's fun at parties.)
To all who read and have (or think they have!) some medical knowledge: I am happy to have informed advice. Please understand that I already have a breast surgeon who is the chief of Breast Surgery at Englewood Hospital and Medical Center. Her name is V. Merle McIntosh (the "V" stands for Violet, which tickles me, somehow) and she has taken very good care of me thus far. If you personally know or have heard something TERRIFIC about her, PLEASE SHARE! If you have FIRST-HAND experience that you think should cause me to seek a 2d opinion - please make darned sure your info is accurate before telling me about it.
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