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.
Wednesday, January 30, 2013
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.
Wednesday, January 9, 2013
Symmetry
I have regrown hair on all parts of my body, except, curiously, in my armpits. I could understand the absence of hair on the right side due to radiation, but what about the left? Is it our natural craving for symmetry? If so, I say, three cheers, I am a girl who likes symmetry. Nonetheless, every, and I mean, every, single, time, I shave my legs, I shave under my arms. Sometimes I shave both, sometimes I stop myself midway through, remembering that there’s no need. Our habits, our muscle memories are so deeply entrenched. Just so you know... the public hair was the first to go and the very last to return, I don’t know why, it’s perplexing.
Yesterday after my doctor’s appointment, I did what I realize I always do. I wrote, it was cathartic and then I felt exhausted and my brain, week old mashed potatoes. So I went home, climbed in bed, set alarm and pulled blankets over head. Got up two hours later thanks to alarm and went to middle school pick up, were it not for that I would have stayed in bed all day. And as soon as that chirpy, little love bug got in the car and started, well, chirping, I felt completely myself again, and quite thoroughly back in the present. I had a really nice afternoon/evening with the boys and today I feel fine. Yes, there’s a little, dark phantom following me, damn these stalkers, I can feel it, but it’s keeping it’s distance. I used to go to pieces for days, even weeks, but I really have gotten better about shaking it off, being in the present and waiting for whatever will be, to be. I’m not thinking the worst. I really think everything will be fine. Maybe I’m deluded, but regardless of what happens in a week or a month or a year, it seems entirely tragic, to miss a minute of what i have right this very minute. And in this minute, I feel healthy and alive and I have joy in my heart, so I’m not going to waste it.
Yesterday after my doctor’s appointment, I did what I realize I always do. I wrote, it was cathartic and then I felt exhausted and my brain, week old mashed potatoes. So I went home, climbed in bed, set alarm and pulled blankets over head. Got up two hours later thanks to alarm and went to middle school pick up, were it not for that I would have stayed in bed all day. And as soon as that chirpy, little love bug got in the car and started, well, chirping, I felt completely myself again, and quite thoroughly back in the present. I had a really nice afternoon/evening with the boys and today I feel fine. Yes, there’s a little, dark phantom following me, damn these stalkers, I can feel it, but it’s keeping it’s distance. I used to go to pieces for days, even weeks, but I really have gotten better about shaking it off, being in the present and waiting for whatever will be, to be. I’m not thinking the worst. I really think everything will be fine. Maybe I’m deluded, but regardless of what happens in a week or a month or a year, it seems entirely tragic, to miss a minute of what i have right this very minute. And in this minute, I feel healthy and alive and I have joy in my heart, so I’m not going to waste it.
Tuesday, January 8, 2013
Ghoul in the Shadows
The benefits of bilateral mastectomy are that you can do yoga positions that require lying on your stomach without spending five minutes arranging yourself so it’s comfortable. Short hair means no ponytail poking you in the back of the head when you lie on your back. No risk of smacking yourself on the chin with your own body part, you can jump up and down to your hearts' content. Downside is you don’t really have the energy to jump up and down.
Went to my routine 3 month check up with my oncologist this morning feeling great. They fixed the front doors to the building, so you can no longer go in through the exit door {my preferred route}. Same lovely ladies at check in, some new hairstyles, but all is as it was. I went to visit the nurses, my favorite is back from knee replacement surgery and looks ten years younger, pain can wear you down it seems. There was a new girl doing weight and blood pressure, I guess the sweet one I was used to has had her baby, some things change and and some things stay the same.
Feeling so swell, so optimistic and carefree, I was all ready to finally hear, “everything looks good... go and be happy... go live your beautiful life.” Instead, I got to hear that my CA 27.29 tumor marker has gone up. This is a notoriously unreliable test. Some doctors use it and some don’t, but with my love of data, I readily agreed to it. There is a higher chance something other than cancer has caused this elevation, and yet there it is, floating out there, following me around, like a ghoul for the next two weeks until I have it rechecked and then checked again two weeks after that. Will it go up even more, or will it go down, only the shadow knows. So when, I wonder, exactly when, can I go live my life unshrouded by fear? When will I get the all-clear for more than a few weeks? When can I have the opportunity to live unencumbered, unfettered by worry and panic? How do I go home and look into my baby’s great, blue eyes and pretend I’m not worried, that I had a great day. I’ve done it so many times before, you’d think it would get easier... it doesn’t.
Went to my routine 3 month check up with my oncologist this morning feeling great. They fixed the front doors to the building, so you can no longer go in through the exit door {my preferred route}. Same lovely ladies at check in, some new hairstyles, but all is as it was. I went to visit the nurses, my favorite is back from knee replacement surgery and looks ten years younger, pain can wear you down it seems. There was a new girl doing weight and blood pressure, I guess the sweet one I was used to has had her baby, some things change and and some things stay the same.
Feeling so swell, so optimistic and carefree, I was all ready to finally hear, “everything looks good... go and be happy... go live your beautiful life.” Instead, I got to hear that my CA 27.29 tumor marker has gone up. This is a notoriously unreliable test. Some doctors use it and some don’t, but with my love of data, I readily agreed to it. There is a higher chance something other than cancer has caused this elevation, and yet there it is, floating out there, following me around, like a ghoul for the next two weeks until I have it rechecked and then checked again two weeks after that. Will it go up even more, or will it go down, only the shadow knows. So when, I wonder, exactly when, can I go live my life unshrouded by fear? When will I get the all-clear for more than a few weeks? When can I have the opportunity to live unencumbered, unfettered by worry and panic? How do I go home and look into my baby’s great, blue eyes and pretend I’m not worried, that I had a great day. I’ve done it so many times before, you’d think it would get easier... it doesn’t.
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