A couple of years ago, I was setting up for an outdoor show on a very warm morning. Setting up is hard, sweat-inducing work and I realized I’d forgotton to put on deodorant that morning. Sweaty, sticky pits is something that is just intolerable to me, a true misery. I’m not concerned about odor, I’m not particularly stinky, it’s that awful sticky feeling.
That crazy lack of boundaries and I lamented my situation to my neighbor and instead of thinking I was nuts, she said “I can’t stand that, I bring deodorant everywhere I go, do you want to borrow mine?” She thought I might be put off by the non-politically correct hygenic aspect of it, but she was wrong, hygene doesn’t play a role in sweet salvation.
These years later, I sell that person’s work in my shop and count them as a friend. Friendships begin under the oddest, unlikeliest of circumstances.
I was in the shower the other morning and started to shave under my arms for the umpteenth {umpmillionth} time and it occurred to me that if the hair follicles were no longer functioning, maybe the sweat glands would be dormant too and I’d never need deodorant again. I have some experimenting to do.
I had to stop at CVS this afternoon to get a few last minute supplies before the tall one and I hit the road. He was out of deodorant and unlike at that summer show, he won’t use mine. Maybe because it has a flower on the label, maybe because sharing is gross, although he has no problem using my bath towel, even though it’s pink, signifying “girl”, meaning, paws off, use your own damned towel, because you are stinky.
Flash forward and, we are now in Maine, just the two of us having discovered on the ride up that we have much of the same music on our iPods! Newly licensed, I was the passenger for the first time for part of the way, I stayed much calmer than I thought I’d be and I think I was a pretty good “back seat” coach. We’re staying in a beautiful Inn and we'll visit three colleges in three days. Colby, Bowdoin and Bates, with Bowdoin having become his absolute dream school and let the realist in me say... reach school. Over the years, I’ve payed no heed to the coaches singing his talents, suggesting college play, “bullshit” being my most common response, as there are high school athletes at every school in every town, in every city, in this great, big, giant, competitive country, many with fanatic fathers and private coaches, and yet lo and behold,it seems there may be some interest in my boy. I would love to stand corrected! And he is the luckiest person I've ever met.
I’m learning as I go, but it seems that high-end academic schools with Division III {lowest division} sports need athletes that at least come close to their academic standards. Add in the Lucky 4, the four extra inches that make him a 6’4” lefty quarterback and pitcher and that he’s rocking a 3.8 gpa at the moment with four AP classes, we are meeting with the coach at Colby tomorrow and waiting for a call from the one at Bowdoin who our coach tells us is very interested after seeing his film and grades.
We had dinner tonight at the pub at the Inn where we’re staying. We were seated against the wall and near the end of our meal a couple came in and sat at the next table. Turns out it was trivia night and as we got talking to them, we ended up playing the trivia game together, unofficially contributing answers. Turns out octopus’ have three hearts and Chow’s have black tongues. There was a large, really obnoxious table of people in the middle of the room who seemed quite cozy with the folks running the game, so we started bonding through a shared axe to grind, annoyance with this group, so true confessions... we cheated. G had his iPhone and he looked up a couple of answers, turns out though we would have won without his help because we won by a lot and he and I weren’t officially on their team, we were “innocent” bystanders mumbling out answers, of course, that still makes us cheaters, but it was really fun, we totally kicked everyone’s ass including the 2nd place noisy group which didn’t make the game leaders happy, so they pretty much smacked down the small pile of money on our neighbor’s table and that was that. A quiet night in our hotel room turned into a really fun evening with a lovely couple who told us what a fabulous place Brunswick, Maine is and that when Griffin goes to Bowdoin we should come visit them. A pretty and very competitive obstetrician and her cute and sweet physical trainer husband, who we bonded with by cheating at trivia, odd and unlikely circumstances. A perfect day, one of the things I thought about in the chemo chair was not being able, not having the energy or stamina to do things like take college trips with G and here I am, feeling great, happy as can be, the only difference is I'm staying in a nice hotel, not a crappy motel cause if life is short and you only get one... I'm taking the nice hotel route. As a bonus, G, for the very first time, I think, understands why I always talk to strangers. It used to embarrass him, but slowly, I hope he’s learning that some boundaries are for suckers, talking to strangers makes life richer, literally, as they insisted on sharing the pot with us, we're $15 richer.
Tuesday, February 19, 2013
Saturday, February 9, 2013
The Upside of Stubborn
I’ve read, and I know to be true, that after experiencing a stillbirth, people have very different reactions. Some never want to think about being pregnant, and taking that chance at heartbreak again. Some are damaged, or traumatized into paralysis and devolve into chemical dependency or plain old anger, many divorce, some get plain looney, some spend the rest of their life "honoring" that child, and some refuse to take no for an answer. I fell into the last camp. My daughter will haunt my heart until my last day, but from the minute I lost her I began planning and plotting for another baby. Losing that baby made me so clear on what I wanted and the meaning of life and what was important and how life was a gift, all those nauseatingly corny things, true, true, true. I learned to take nothing for granted {that’s why cancer is so redundant}. I wanted to adopt, but there were roadblocks and my spouse was soundly in a different camp. Every night I laid in bed dreaming of the day I would bring my baby home, how it would feel to nurse her, hold her in my arms. Time passed, nothing happened and the fertility docs said I’d resoundingly flunked. My FSH was high which meant no more eggs, no more babies, fertility drugs would be useless, there was nothing to ovulate. I went for a second opinion to a really nice guy who headed the fertility dept. at Women & Infants and he said that having a baby for me was a million to one chance, that I’d have a better chance of winning the lottery and I just couldn’t plan my life around having another baby {oh, those statistics}. In effect, I was told that I had 100% chance of never having another baby.
Maybe I was insane at the time, but not for one minute did I accept that I wouldn’t have another baby {despite the statistics}. I’m not usually the denial type, in fact, I absolutely suck at denial, but for not a single night did I go to sleep thinking about anything other than my sweet future baby. I obsessed over names, not infertility, I designed baby announcements in my head, her first birthday party, I liked the name Diana, for the warrior. I spent more money on pregnancy tests than I care to admit and I always did them a little too early, I was so desperate for a line. I’m sure friends felt sorry for me, and thought I was nuts, but have I mentioned my son Jonah? My beloved? My soulmate? My sweet baby boy? The only thing I got wrong was the gender which he cleared up for me about 4 months along by sending me the most powerful burst of boy energy and from there on in his name was Jonah, my sweet Jonah.
I don’t believe in god, or fairies, or miracles, I believe that I willed that child into existence. I believe perhaps we are more powerful than we know, and I also know that I could not have lived the rest of my life without that baby, I could not, would not take no for an answer, I guess I can be stubborn. I needed and wanted that baby in a way I can’t describe. Once you give birth and leave the hospital with nothing in your arms, when you go home to an empty nursery and pile of pink jammies, things change, everything changes. And when that day you go home happens to be the fourth of July and you can hear people celebrating and shooting off fireworks all around you well into the night, well, maybe you just throw down, maybe grief makes you a warrior, makes you relentless.
And then the odyssey of the pregnancy and one diagnosis after another. Hydrocephalus, brain damage, placental problems {this part was true}, for a good bit, my doctors didn’t think he’d reach viability, but I did. I knew him, and I knew he was spunky and he is, in fact, the most stubborn person I’ve ever met which I guess is my fault because he was the product of my sheer stubbornness.
Seven weeks early and didn’t even need a respirator, he could breathe on his own. Tangled intestines meant major surgery at 4lbs and a day old but afterwards he could pull his nose tube out hand over hand. I wouldn't believe that possible had I not seen it with my own eyes, I was so proud of him. Five weeks in the NICU and has barely been sick a day in his life. Brain damaged, oh I think not. The cleverest, most creative character I have ever met, as well as the oldest soul with the truest, kindest heart. Ever.
So I figure if I can will that to happen, then I can will my body into being a place where cancer no longer grows. I can will myself into seeing my kids grow up. I do not accept cancer, I do not accept these odds anymore than I accepted the odds of ever holding a baby in my arms. I’ve been looking for a doctor that will give me different odds, but suddenly I realize the odds are what I make of them and I have decided with all my heart and soul that I will not be the one that relapses, I will not die of cancer, not in the near future anyway. I am cancer-free, I will remain cancer free, that’s just the way it’s going to be. I haven’t allowed myself to look into the future because it breaks my heart, but not anymore, I’m going to dream of graduations and weddings and all those happy things. I’ll live in the moment and look into the future with anticipation and I will that into reality, just like I willed my baby into being. I will think about my future every night the way I used to think about my baby, but outwardly, I’m moving on, I’m getting out of cancertown, I don't want to be a cancer groupie, I'm not going to wear pink and go to pep rallies and walks for awareness. I’ll do what I can do, I’ll exercise, I’ll keep drinking those green smoothies and most importantly, I’ll be happy because I think that’s the healthiest thing anyone can do. I'm taking over, I'm the new boss of me, not these doctors and not these statistics, I tet it, I finally get it.
Maybe I was insane at the time, but not for one minute did I accept that I wouldn’t have another baby {despite the statistics}. I’m not usually the denial type, in fact, I absolutely suck at denial, but for not a single night did I go to sleep thinking about anything other than my sweet future baby. I obsessed over names, not infertility, I designed baby announcements in my head, her first birthday party, I liked the name Diana, for the warrior. I spent more money on pregnancy tests than I care to admit and I always did them a little too early, I was so desperate for a line. I’m sure friends felt sorry for me, and thought I was nuts, but have I mentioned my son Jonah? My beloved? My soulmate? My sweet baby boy? The only thing I got wrong was the gender which he cleared up for me about 4 months along by sending me the most powerful burst of boy energy and from there on in his name was Jonah, my sweet Jonah.
I don’t believe in god, or fairies, or miracles, I believe that I willed that child into existence. I believe perhaps we are more powerful than we know, and I also know that I could not have lived the rest of my life without that baby, I could not, would not take no for an answer, I guess I can be stubborn. I needed and wanted that baby in a way I can’t describe. Once you give birth and leave the hospital with nothing in your arms, when you go home to an empty nursery and pile of pink jammies, things change, everything changes. And when that day you go home happens to be the fourth of July and you can hear people celebrating and shooting off fireworks all around you well into the night, well, maybe you just throw down, maybe grief makes you a warrior, makes you relentless.
And then the odyssey of the pregnancy and one diagnosis after another. Hydrocephalus, brain damage, placental problems {this part was true}, for a good bit, my doctors didn’t think he’d reach viability, but I did. I knew him, and I knew he was spunky and he is, in fact, the most stubborn person I’ve ever met which I guess is my fault because he was the product of my sheer stubbornness.
Seven weeks early and didn’t even need a respirator, he could breathe on his own. Tangled intestines meant major surgery at 4lbs and a day old but afterwards he could pull his nose tube out hand over hand. I wouldn't believe that possible had I not seen it with my own eyes, I was so proud of him. Five weeks in the NICU and has barely been sick a day in his life. Brain damaged, oh I think not. The cleverest, most creative character I have ever met, as well as the oldest soul with the truest, kindest heart. Ever.
So I figure if I can will that to happen, then I can will my body into being a place where cancer no longer grows. I can will myself into seeing my kids grow up. I do not accept cancer, I do not accept these odds anymore than I accepted the odds of ever holding a baby in my arms. I’ve been looking for a doctor that will give me different odds, but suddenly I realize the odds are what I make of them and I have decided with all my heart and soul that I will not be the one that relapses, I will not die of cancer, not in the near future anyway. I am cancer-free, I will remain cancer free, that’s just the way it’s going to be. I haven’t allowed myself to look into the future because it breaks my heart, but not anymore, I’m going to dream of graduations and weddings and all those happy things. I’ll live in the moment and look into the future with anticipation and I will that into reality, just like I willed my baby into being. I will think about my future every night the way I used to think about my baby, but outwardly, I’m moving on, I’m getting out of cancertown, I don't want to be a cancer groupie, I'm not going to wear pink and go to pep rallies and walks for awareness. I’ll do what I can do, I’ll exercise, I’ll keep drinking those green smoothies and most importantly, I’ll be happy because I think that’s the healthiest thing anyone can do. I'm taking over, I'm the new boss of me, not these doctors and not these statistics, I tet it, I finally get it.
Friday, February 8, 2013
Dana Farber, Blizzard Edition
I’ve checked another box off my list, I’ve been to the castle on the hill, Dana Farber, for a consult at the conclusion of which, my body finally gave in to the head cold it’d been staving off and now I’m home watching the snow fall surrounded by balled up tissues.
Dana Farber was depressing. It’s efficient, I will say, a procedure for everything and runs like clockwork. I met yet another oncologist, who while personable had nothing to tell me I didn’t know. 70/30, that’s just the way it is. I went and got myself one lousy disease. There are no idicators that can predict who will be the 70 and who will be among the 30, or why the heck anyone gets this in the first place, and like all good western practitioners he believes there isn’t a thing I can do to improve my chances, to stack the cards in my favor.
He told me to live in the moment, enjoy every day... if I’ve always wanted to go to Paris I should go. I should do what I want unless that happens to be buying an old house that will take 20 years to fix up... that wouldn’t be the best choice. Speaking of poor choices, that wasn’t the best analogy. Neither was bringing up writing a will and having my affairs in order. While good advice, I don’t want to hear that from an oncologist.
I still refuse to believe there’s no mind/body connection, no nutritional connection. Not that I would expect either of those to be a cure all, but they’ve got to play a role, have got to improve one’s chances. Many western practitioners don’t believe a wit in acupuncture while a whole other culture embraces it completely. There might not be FDA approved evidence, but there must be a more well-rounded picture.
The last stop on my quest will be in two weeks when I visit a naturopath who is also an MD. I’m hoping he can be my partner in health, help me keep my body strong so it can fight off any relapse at the start. They didn’t even examine me at Dana Farber, just a chat... all those records and slides and films, for what?
So I go back to my life, I feel like I really have been living in the present and I remind myself that 12 years ago I flunked every fertility test and was told I’d have a better chance of winning the lottery than having a baby. I remember so vividly, how I simply would not hear that, would not acknowledge it, would not embrace it and I think I willed my beloved into being, I truly believe that. So I am powerful, and I must will myself into the 70%, but just in case, I won’t waste a minute.
I baked two batches of chocolate chip cookies today instead on one, and I’ve planned a trip to Maine with the tall one to look at colleges in two weeks over february break and I got us the nicest hotel room I could find.
I give in and next week I’m putting him on my auto insurance so he can do part of the driving and show off, and yes, I might take a sedative first.
I’m suddenly fine that my wholesale biz is tanking, I’m going to help the tall one’s football coach raise lots and lots of money to take the whole team to forida. Payback for all he’s done for my boy which is even more than a lot, and because those boys will have the time of their lives and I want to help make it happen, here and now, because I’m here... now. And yeah, I’m going too.
And I’ll enjoy watching the snow fall without giving any thought to shoveling, that’s for another day, I’ll be grateful that I’m holed up in my warm cozy house, and I’m going to stop thinking about numbers and statistics and cancer and just live my life and try to leave nothing and no one unnoticed or unappreciated. Really, what else can I do?
Dana Farber was depressing. It’s efficient, I will say, a procedure for everything and runs like clockwork. I met yet another oncologist, who while personable had nothing to tell me I didn’t know. 70/30, that’s just the way it is. I went and got myself one lousy disease. There are no idicators that can predict who will be the 70 and who will be among the 30, or why the heck anyone gets this in the first place, and like all good western practitioners he believes there isn’t a thing I can do to improve my chances, to stack the cards in my favor.
He told me to live in the moment, enjoy every day... if I’ve always wanted to go to Paris I should go. I should do what I want unless that happens to be buying an old house that will take 20 years to fix up... that wouldn’t be the best choice. Speaking of poor choices, that wasn’t the best analogy. Neither was bringing up writing a will and having my affairs in order. While good advice, I don’t want to hear that from an oncologist.
I still refuse to believe there’s no mind/body connection, no nutritional connection. Not that I would expect either of those to be a cure all, but they’ve got to play a role, have got to improve one’s chances. Many western practitioners don’t believe a wit in acupuncture while a whole other culture embraces it completely. There might not be FDA approved evidence, but there must be a more well-rounded picture.
The last stop on my quest will be in two weeks when I visit a naturopath who is also an MD. I’m hoping he can be my partner in health, help me keep my body strong so it can fight off any relapse at the start. They didn’t even examine me at Dana Farber, just a chat... all those records and slides and films, for what?
So I go back to my life, I feel like I really have been living in the present and I remind myself that 12 years ago I flunked every fertility test and was told I’d have a better chance of winning the lottery than having a baby. I remember so vividly, how I simply would not hear that, would not acknowledge it, would not embrace it and I think I willed my beloved into being, I truly believe that. So I am powerful, and I must will myself into the 70%, but just in case, I won’t waste a minute.
I baked two batches of chocolate chip cookies today instead on one, and I’ve planned a trip to Maine with the tall one to look at colleges in two weeks over february break and I got us the nicest hotel room I could find.
I give in and next week I’m putting him on my auto insurance so he can do part of the driving and show off, and yes, I might take a sedative first.
I’m suddenly fine that my wholesale biz is tanking, I’m going to help the tall one’s football coach raise lots and lots of money to take the whole team to forida. Payback for all he’s done for my boy which is even more than a lot, and because those boys will have the time of their lives and I want to help make it happen, here and now, because I’m here... now. And yeah, I’m going too.
And I’ll enjoy watching the snow fall without giving any thought to shoveling, that’s for another day, I’ll be grateful that I’m holed up in my warm cozy house, and I’m going to stop thinking about numbers and statistics and cancer and just live my life and try to leave nothing and no one unnoticed or unappreciated. Really, what else can I do?
Tuesday, February 5, 2013
Prom Queen
Tomorrow is my big outing to Dana Farber Cancer Center in Boston. Things have fallen pretty far when that’s your big day out. In the past few weeks, I’ve been giddy with excitement, as if I’m preparing for the prom at a fancy hotel, my first fancy hotel. In the past few days, however, aided by being cooped up at home with a sick boy, and maybe fighting off a bug myself, I’ve become a tad petrified.
I’m happy that a new pair of eyeballs, world reknowned eyeballs will be looking at my copious tests, slides, samples and reports. I’m looking forward to comparing and contrasting the facilities and philosophies. My hope is to gain a new level of optimism, that a relapse doesn’t mean certain and somewhat rapid death which is the information I’m currently in possession of. I can deal with some level of early death, but if I relapse, and that’s mostly likely to occur within five years, I need to eek out a few more years, I need to get my kids further on their way, I have to have time to get so many things in order. I want to hear about options and resources and experimental treatments and I’m hoping for some better numbers, or something where the arrow points up instead of down.
Life has been so good these last few months and as I feel better and better and can do more and more a relapse seems unthinkable, but then I realize that this whole situation is unthinkable, but is, none the less, quite real, quite thinkable.
It’s so hard to look ahead, to make plans which is, on the one hand, freeing, but on the other, paralyzing. I have to rebuild my business, earning money is a necessity, but that requires long term planning and it seems crazy to do that, and equally crazy not to.
I hope to come away with something from Dana Farber that helps me move forward but I also know that might be something I have to just figure out how to do on my own.
I’m happy that a new pair of eyeballs, world reknowned eyeballs will be looking at my copious tests, slides, samples and reports. I’m looking forward to comparing and contrasting the facilities and philosophies. My hope is to gain a new level of optimism, that a relapse doesn’t mean certain and somewhat rapid death which is the information I’m currently in possession of. I can deal with some level of early death, but if I relapse, and that’s mostly likely to occur within five years, I need to eek out a few more years, I need to get my kids further on their way, I have to have time to get so many things in order. I want to hear about options and resources and experimental treatments and I’m hoping for some better numbers, or something where the arrow points up instead of down.
Life has been so good these last few months and as I feel better and better and can do more and more a relapse seems unthinkable, but then I realize that this whole situation is unthinkable, but is, none the less, quite real, quite thinkable.
It’s so hard to look ahead, to make plans which is, on the one hand, freeing, but on the other, paralyzing. I have to rebuild my business, earning money is a necessity, but that requires long term planning and it seems crazy to do that, and equally crazy not to.
I hope to come away with something from Dana Farber that helps me move forward but I also know that might be something I have to just figure out how to do on my own.
Wednesday, January 30, 2013
Acquired Thermal Discomfort
I am simultaneously doing a fabulous job of living {very happily} in the moment and nervously seeking data. Most of the primary data about my disease, it’s type and stage, aggressiveness and reaction to chemo, etc., is negative. Regardless of my new happy-go-lucky self, this dwells in the back of my mind and leads me on a constant quest for good news, or positive indicators, if you will. I now view the symptoms of normal life through the lens of cancer and statistics, which leads me to some insane googling. I enter long strings of info. which often gets me nowhere, sometimes gets me somewhere I’d rather not be and rarely, oh so rarely, gets me a shred of positive reinforcement, if not outright chuckling.
My most recent google query was: do hot flashes mean breast cancer recurrence? because my hot flashes are constant and insane. I clicked on a few links and found the following which really amuses me. There’s something about the way it’s written. I read a lot of dense medical articles or dumbed down layperson directed pieces and this one is different, an anomaly in the sea of curt medical writing. Not only does it unexpectedly say what I want it too, albeit it nebulously, it’s just hilarious. This is just an excerpt, I can’t tell you the amount of times the whole piece said “thermal”. And who knew there was a Thermal Medicine Specialist?
This article was prepared to familiarise cancer researchers and thermal medicine specialists with the fact that a large percentage of patients report the onset of a significant degree of acquired thermal discomfort symptoms after cancer. While patients with various types of cancer report this symptom, breast cancer far outweighs the other cancers in terms of reports of thermal discomfort symptoms. Breast cancer patients frequently feel excessively hot and/or cold under ambient temperature conditions in which others are able to adjust easily to achieve thermal comfort.
While the literature reveals a strong link between treatment for breast cancer and some menopausal vasomotor symptoms (e.g. hot flashes also known as “hot flushes”), there is little data on quantitative assessment of severity of different types of symptoms and their possible prognostic potential. However, recent, intriguing studies indicating a correlation between the presence of hot flashes and reduced development of breast cancer recurrence strongly suggests that more study on this topic is needed.
Out with the “hot flashes” and in with Acquired Thermal Discomfort, ATD, so much more dignified and legitimate sounding. I think there should be a television commercial with two people in bathtubs discussing ATD. And just wondering... who calls them "hot flushes?" People in Scotland? Furthermore, just so you know:
The ability to achieve thermal comfort, feeling neither too hot nor too cold under different ambient temperatures, is normally controlled by conscious and unconscious mechanisms regulated by a homeostatic process known as thermoregulation. There appear to be two major types of breast cancer-related defects in thermoregulation: (1) excessive, rapid overheating, similar to that which occurs with the vasomotor symptoms associated with menopause (i.e. ‘hot flashes’) and (2) excessive, persistent chills. However, many women report the occurrence of both symptoms and studies to identify whether there are different, identifiable patterns of thermal discomfort after breast cancer have not been conducted.
Thermoregulation is my new favorite word. I'm sorry for ripping my clothes off at the dinner table, I'm having difficulty with my thermoregulation. Unfortunately, they also found a similarly nebulous correlation between ATD and risk for cardiovascular disease, I'll just ignore that part. Yay for hot flashes.
My most recent google query was: do hot flashes mean breast cancer recurrence? because my hot flashes are constant and insane. I clicked on a few links and found the following which really amuses me. There’s something about the way it’s written. I read a lot of dense medical articles or dumbed down layperson directed pieces and this one is different, an anomaly in the sea of curt medical writing. Not only does it unexpectedly say what I want it too, albeit it nebulously, it’s just hilarious. This is just an excerpt, I can’t tell you the amount of times the whole piece said “thermal”. And who knew there was a Thermal Medicine Specialist?
This article was prepared to familiarise cancer researchers and thermal medicine specialists with the fact that a large percentage of patients report the onset of a significant degree of acquired thermal discomfort symptoms after cancer. While patients with various types of cancer report this symptom, breast cancer far outweighs the other cancers in terms of reports of thermal discomfort symptoms. Breast cancer patients frequently feel excessively hot and/or cold under ambient temperature conditions in which others are able to adjust easily to achieve thermal comfort.
While the literature reveals a strong link between treatment for breast cancer and some menopausal vasomotor symptoms (e.g. hot flashes also known as “hot flushes”), there is little data on quantitative assessment of severity of different types of symptoms and their possible prognostic potential. However, recent, intriguing studies indicating a correlation between the presence of hot flashes and reduced development of breast cancer recurrence strongly suggests that more study on this topic is needed.
Out with the “hot flashes” and in with Acquired Thermal Discomfort, ATD, so much more dignified and legitimate sounding. I think there should be a television commercial with two people in bathtubs discussing ATD. And just wondering... who calls them "hot flushes?" People in Scotland? Furthermore, just so you know:
The ability to achieve thermal comfort, feeling neither too hot nor too cold under different ambient temperatures, is normally controlled by conscious and unconscious mechanisms regulated by a homeostatic process known as thermoregulation. There appear to be two major types of breast cancer-related defects in thermoregulation: (1) excessive, rapid overheating, similar to that which occurs with the vasomotor symptoms associated with menopause (i.e. ‘hot flashes’) and (2) excessive, persistent chills. However, many women report the occurrence of both symptoms and studies to identify whether there are different, identifiable patterns of thermal discomfort after breast cancer have not been conducted.
Thermoregulation is my new favorite word. I'm sorry for ripping my clothes off at the dinner table, I'm having difficulty with my thermoregulation. Unfortunately, they also found a similarly nebulous correlation between ATD and risk for cardiovascular disease, I'll just ignore that part. Yay for hot flashes.
Friday, January 25, 2013
La Quinta Inn
I’m a happy camper because I just drove home in my rightful vehicle and not only did they fix it, they cleaned it. It wasn’t very messy, but an unexpected vacuum is always a good thing. Driving home from the repair place I passed a La Quinta Inn. I don’t think I’ll ever pass a La Keeeenta Inn without chuckling. If you’ve not heard Mike Birbiglia reading his story Sleepwalk with Me on This American Life, drop everything right now and go listen to the podcast. I haven’t seen the movie yet, but I hear it’s on Netflix.
I’m getting constant mail from colleges on Griffin’s behalf. Email, snail mail and it’s been unrelenting for months. So many colleges, I just don’t know how people chose. Well, I kind of do, because it’s all I talk to folks about, but it’s pretty overwhelming... so, so, so many colleges. The mystery of course, is which one has a lot of endowment money they want to give away to pay themselves with.
I picked that H.S. Junior up early today because he’d finished his last mid-term and there’s nothing to do for the rest of the day. He really studied the past two weeks so I took him to lunch and he picked Chili’s. I wasn’t that hungry and there’s nothing remotely small or light on the menu, so I ordered a bowl of chili. I thought, it’s named Chili’s, they must have halfway decent chili. Wrong. I’ve brushed my teeth, chewed gum and I can still taste it, but I think that might be more from the trauma of how awful it was. I’ve been drinking water all day, but it’s no match for how much sodium must have been in that small bowl. Chili’s chili is like lukewarm ketchup with spices and faux beef that is actually god only knows what. I took a bite of my lunchmate’s $12.00 chicken tenders and I don’t think they were real chicken either. I think it was reconstituted, shaped, chicken product. Eww. But the company was lovely and I got to be a hero for picking him up early. I had work to do, but that can wait, my priorities have changed. But sorry, no more Chili’s for us.
I’m getting constant mail from colleges on Griffin’s behalf. Email, snail mail and it’s been unrelenting for months. So many colleges, I just don’t know how people chose. Well, I kind of do, because it’s all I talk to folks about, but it’s pretty overwhelming... so, so, so many colleges. The mystery of course, is which one has a lot of endowment money they want to give away to pay themselves with.
I picked that H.S. Junior up early today because he’d finished his last mid-term and there’s nothing to do for the rest of the day. He really studied the past two weeks so I took him to lunch and he picked Chili’s. I wasn’t that hungry and there’s nothing remotely small or light on the menu, so I ordered a bowl of chili. I thought, it’s named Chili’s, they must have halfway decent chili. Wrong. I’ve brushed my teeth, chewed gum and I can still taste it, but I think that might be more from the trauma of how awful it was. I’ve been drinking water all day, but it’s no match for how much sodium must have been in that small bowl. Chili’s chili is like lukewarm ketchup with spices and faux beef that is actually god only knows what. I took a bite of my lunchmate’s $12.00 chicken tenders and I don’t think they were real chicken either. I think it was reconstituted, shaped, chicken product. Eww. But the company was lovely and I got to be a hero for picking him up early. I had work to do, but that can wait, my priorities have changed. But sorry, no more Chili’s for us.
Thursday, January 24, 2013
Orangeypinealaide
Oh my god, I'm still shaving my armpits, it's exasperating every time I catch myself doing it. I’m just not myself these days because I’m driving a white, Chevy Malibu while Sparky’s in the shop. I miss my pretty blue baby so much I've disturbingly begun referring to her as Princess in my head and I’m scared I’m going to slip up in front of the boys who will never let me live that down. The Malibu is a mobile monument to bad design, tacky, cheap materials, and rampant beigeism, I can’t wait to return it.
Many doctor’s in my week, first I got a call from my hepatologist letting me know that my elevated liver function tests have finally left their plateau and gone down a little and she thinks that will be the beginning of a positive trend and she says these things in just the right, encouraging tone of voice. The day before, I had a blood draw done to check the liver enzymes and the cancer marker for my oncologist. Since I’ve decided that the elevated cancer marker has to be linked to the liver problems, I was scared to get the results. I decided to just bury my head in the sand and not call the onco for the results, afraid, very afraid, finally deciding to go the denial route. But then, shockingly, he deigned to call me, to say that his tests too, revealed the liver function going down, and the cancer marker going down a bit as well... not at normal yet, but went down by a decent amount. I couldn’t, however, get him to say anything along the lines of “that’s great, I agree, I think your screwy liver is affecting the cancer marker because that’s a common cause.” And it is, a common cause, that’s what I’ve read, but he was emotionless and said “well it’s certainly not a bad thing, and we’ll certainly know more after your next test in a month.” I really started to pester him like a child, “come on, tell me this is a good thing”... I don’t know why I can’t find a cheerleader doctor.
Which brings me to the T.V. show Parenthood. Not a show I’ve ever liked much, but I’ve been watching it this season, because the breast cancer storyline was too morbidly tantalizing. If I disliked this show before, I really dislike it now. Watching this perfect, gorgeous, fun, extended family on their Berkeley, California compound while no one seems to work much, is depressing because well, I don’t get to live there or be in the big perfect family. The depiction of Christina’s doctor just drives me over the ledge. First off, your surgeon, is not also your oncologist and no doctor anywhere, especially oncologists or surgeons, give out their home phone number to patients, I consider myself lucky if I get a call back from the office within a few days. Real cancer patients have to run back and forth between surgeons, oncologists, nurses, primary care physicians and other specialists who all seem to not speak with one another. No one owns your case, they do their part in a vacuum and the patient, in a haze has to somehow coordinate it all. And then comes the PET scan. Christina’s doctor insists she have a PET scan when she completes treatment to make sure she’s cancer free. I have begged every medical professional I’ve come in contact with for a PET scan for that very reason and the only thing they’re united in is their steadfast refusal. “We just don’t do those, they’re not helpful, studies show they don’t change anyone’s outcome.” So freaking what? they give you peace of mind for the moment... they let you live in denial until something pops up. So I don’t get one, but fictional Christina sure does and then a trip to Hawaii because chemo and rads doesn’t make her hyper sun-sensitive like us non-fictional people. Yeah, I could go on and on, but I'll skip the part about no one actually talking to each other or getting to know one another's names at chemo.
I’m working my way through the vast list of items I have to provide to Dana Farber before my consult in February. Records, reports, scans, films, parrafin blocks of god knows what, actual slides of biopsies and tumor samples, it’s overwhelming, many, many phone calls are involved. I’d be picking things up this week, but it’s too darned cold to do extra errands. I’m really curious what it will be like up there... how it will all compare to how things are set up at the facility I’ve been at and a very lovely friend has readily agreed to come up with me so I don’t just wander around the parking lot in circles and remember to ask questions.
If I wasn’t already in love with all things Obama, the girls and their grandma in their jewel-toned outfits would do it. I loved the inaugural speech, loved, loved, loved it and Michelle’s eyeroll was the most priceless, thing I’ve ever seen. And if that wasn’t enough, Hilary telling the Senators Dopey-pants what they could do with it was beautiful. That hearing beyond anything else I’ve seen was the sound of that oft mentioned glass ceiling shattering.
Today, the RI house is voting on gay marriage. We are the only New England state not to have it, and the tall one is on duty as a Page today, so he’ll get to be at the hearings. He’s worried that it will go really late and he won’t get home in time to review for his AP bio mid-term tomorrow. I told him if he gets home really late I’d write a note and let him stay home and take it on Monday. He’s actually been studying these days and I think it’s way cool he’s paging at the State House, and I want him to do well on his test. Maybe I make his life too easy, I probably do, but I can’t seem to help it.
I’ve started buying orange/pineapple juice instead of plain orange and J calls it Orangeypinealaide. Need I even offer commentary on that? Except to say, you’re going to have a good day when it starts with a little imp yelping, Yay, Orangeypinealaide. I wish my oncologist could do for me what Orangeypinalaide does.
Many doctor’s in my week, first I got a call from my hepatologist letting me know that my elevated liver function tests have finally left their plateau and gone down a little and she thinks that will be the beginning of a positive trend and she says these things in just the right, encouraging tone of voice. The day before, I had a blood draw done to check the liver enzymes and the cancer marker for my oncologist. Since I’ve decided that the elevated cancer marker has to be linked to the liver problems, I was scared to get the results. I decided to just bury my head in the sand and not call the onco for the results, afraid, very afraid, finally deciding to go the denial route. But then, shockingly, he deigned to call me, to say that his tests too, revealed the liver function going down, and the cancer marker going down a bit as well... not at normal yet, but went down by a decent amount. I couldn’t, however, get him to say anything along the lines of “that’s great, I agree, I think your screwy liver is affecting the cancer marker because that’s a common cause.” And it is, a common cause, that’s what I’ve read, but he was emotionless and said “well it’s certainly not a bad thing, and we’ll certainly know more after your next test in a month.” I really started to pester him like a child, “come on, tell me this is a good thing”... I don’t know why I can’t find a cheerleader doctor.
Which brings me to the T.V. show Parenthood. Not a show I’ve ever liked much, but I’ve been watching it this season, because the breast cancer storyline was too morbidly tantalizing. If I disliked this show before, I really dislike it now. Watching this perfect, gorgeous, fun, extended family on their Berkeley, California compound while no one seems to work much, is depressing because well, I don’t get to live there or be in the big perfect family. The depiction of Christina’s doctor just drives me over the ledge. First off, your surgeon, is not also your oncologist and no doctor anywhere, especially oncologists or surgeons, give out their home phone number to patients, I consider myself lucky if I get a call back from the office within a few days. Real cancer patients have to run back and forth between surgeons, oncologists, nurses, primary care physicians and other specialists who all seem to not speak with one another. No one owns your case, they do their part in a vacuum and the patient, in a haze has to somehow coordinate it all. And then comes the PET scan. Christina’s doctor insists she have a PET scan when she completes treatment to make sure she’s cancer free. I have begged every medical professional I’ve come in contact with for a PET scan for that very reason and the only thing they’re united in is their steadfast refusal. “We just don’t do those, they’re not helpful, studies show they don’t change anyone’s outcome.” So freaking what? they give you peace of mind for the moment... they let you live in denial until something pops up. So I don’t get one, but fictional Christina sure does and then a trip to Hawaii because chemo and rads doesn’t make her hyper sun-sensitive like us non-fictional people. Yeah, I could go on and on, but I'll skip the part about no one actually talking to each other or getting to know one another's names at chemo.
I’m working my way through the vast list of items I have to provide to Dana Farber before my consult in February. Records, reports, scans, films, parrafin blocks of god knows what, actual slides of biopsies and tumor samples, it’s overwhelming, many, many phone calls are involved. I’d be picking things up this week, but it’s too darned cold to do extra errands. I’m really curious what it will be like up there... how it will all compare to how things are set up at the facility I’ve been at and a very lovely friend has readily agreed to come up with me so I don’t just wander around the parking lot in circles and remember to ask questions.
If I wasn’t already in love with all things Obama, the girls and their grandma in their jewel-toned outfits would do it. I loved the inaugural speech, loved, loved, loved it and Michelle’s eyeroll was the most priceless, thing I’ve ever seen. And if that wasn’t enough, Hilary telling the Senators Dopey-pants what they could do with it was beautiful. That hearing beyond anything else I’ve seen was the sound of that oft mentioned glass ceiling shattering.
Today, the RI house is voting on gay marriage. We are the only New England state not to have it, and the tall one is on duty as a Page today, so he’ll get to be at the hearings. He’s worried that it will go really late and he won’t get home in time to review for his AP bio mid-term tomorrow. I told him if he gets home really late I’d write a note and let him stay home and take it on Monday. He’s actually been studying these days and I think it’s way cool he’s paging at the State House, and I want him to do well on his test. Maybe I make his life too easy, I probably do, but I can’t seem to help it.
I’ve started buying orange/pineapple juice instead of plain orange and J calls it Orangeypinealaide. Need I even offer commentary on that? Except to say, you’re going to have a good day when it starts with a little imp yelping, Yay, Orangeypinealaide. I wish my oncologist could do for me what Orangeypinalaide does.
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