And a happy Easter from this little teething beauty to you and yours.
Sunday, March 31, 2013
A Happy Easter!
Friday, March 22, 2013
Semantics.
Well, since I have no CT scan results to post, I occupy my brain with a different topic. Finally got my gumption up to call the doctor today to ask for the results and the girl who answered the phone said, okay I'll send a note to Dr. K, but he's not in until Tuesday so he won't be able to give you these results until then. I said oh, has he been out, and she said, yes, he's been out all week...ooookkaay then, thanks.
On to "other topic" - the vernacular of cancer. I am not comfortable with most of the vernacular of this lovely disease and I find myself cringing more and more when I hear certain things. I'm not sure why cancer has such a separate language. Maybe because it's one of the few modern diseases that, while utterly terrifying and devastating and deadly, actually can be "cured" in many cases. I don't know. But these words that are used - fighter, warrior, survivor some of the most common - they make me uncomfortable and here is why.
I've been around chronic disease all of my life. My uncle, mentioned a few posts ago, developed Type 1 diabetes when he was 9, so it was always around me. I saw the shots every day, I saw insulin reactions, it was all commonplace. He didn't develop many serious complications until I was in my teens but I was always aware of illness. My college ex-boyfriend was also diabetic, what is termed a "brittle diabetic", meaning his diabetes was very difficult to control. I saw the inside of a hospital almost as much as I've seen in the past 9 months for myself. As much as they went through, the pain, the inconvenience, the devastation, they were never called "fighters", they were never "battling" diabetes, no one ever told them "kick diabetes' ass" - they just had it. And they weren't called survivors for every year they stayed alive. I had a cousin who was bedridden as a result of MS from before I was born until he died when I was around 11. He didn't battle MS, he just had it. My grandfather battled on Iwo Jima, but he didn't battle or fight the multiple strokes and resulting dementia that he suffered for ten years. People with ALS or cystic fibrosis or lupus, the list goes on and on, these people are never called fighters - they are always just referred to as having their illness.
Two people have used the word survivor with me now, one called me fellow survivor and one said I had a great survivor story. The thing is, to me, I'm not a survivor. What denotes a survivor? I haven't been cleared yet, I don't know what's in me or not (see first paragraph), I haven't even finished treatment. When I was at the Komen walk last year, they had the "survivor's tent". I stood there and wondered what the hell does that mean? Do you have to have a Dr's note saying you are cancer-free to be let in the tent? Do you have to be in remission for a certain amount of years? If you are in treatment, you aren't good enough to be let in the tent? If you relapse, are your tent privileges revoked?
When I first told people I had cancer, many of them told me I would "kick cancer's ass". (please, if you were one of them, I'm not singling you out, I'm just giving you my perspective, and my perspective has evolved as I've lived in this world). To me, and I know it's not meant to, but it sort of puts the onus on me right there - I need to battle this, fight this, kick its ass! And it's not just me, that's a common phrase used - I have a high school friend going through her second round of radiation now for a very uncommon type of nasal cancer - some of the comment's left for her by her friends tell her to kick cancer's ass. If this gets one of us, did we not kick ass hard enough? Were we not bad ass enough? Another friend from high school passed away almost eight years ago now from an exceedingly rare type of pulmonary sarcoma - she was an awesome person, very spunky, very bad ass - no matter how much cancer ass she kicked, it was likely not going to be enough. She didn't lose her battle, she didn't not fight hard enough, it just happened. There was nothing she personally could do that she didn't do.
I'm not even a fighter. I'm just doing the best I can with what I have, I'm doing the treatment that most everyone else does. Luckily my tumors responded to at least the A/C chemo. Did I choose to do the treatment where others may not have? Sure, but I don't know their situation and I have no right to say someone gave up or didn't fight because they chose not do do a certain treatment. The whole warrior lingo, the battling, I just don't like it. If someone doesn't make it does that imply they didn't fight hard enough? They didn't "kick cancer's ass" hard enough? They lost a battle? I know it's not meant with anything but the best intentions and I don't begrudge whatever words people want to use to make themselves feel better, but for me, these words leave a bad taste in my mouth.
On to "other topic" - the vernacular of cancer. I am not comfortable with most of the vernacular of this lovely disease and I find myself cringing more and more when I hear certain things. I'm not sure why cancer has such a separate language. Maybe because it's one of the few modern diseases that, while utterly terrifying and devastating and deadly, actually can be "cured" in many cases. I don't know. But these words that are used - fighter, warrior, survivor some of the most common - they make me uncomfortable and here is why.
I've been around chronic disease all of my life. My uncle, mentioned a few posts ago, developed Type 1 diabetes when he was 9, so it was always around me. I saw the shots every day, I saw insulin reactions, it was all commonplace. He didn't develop many serious complications until I was in my teens but I was always aware of illness. My college ex-boyfriend was also diabetic, what is termed a "brittle diabetic", meaning his diabetes was very difficult to control. I saw the inside of a hospital almost as much as I've seen in the past 9 months for myself. As much as they went through, the pain, the inconvenience, the devastation, they were never called "fighters", they were never "battling" diabetes, no one ever told them "kick diabetes' ass" - they just had it. And they weren't called survivors for every year they stayed alive. I had a cousin who was bedridden as a result of MS from before I was born until he died when I was around 11. He didn't battle MS, he just had it. My grandfather battled on Iwo Jima, but he didn't battle or fight the multiple strokes and resulting dementia that he suffered for ten years. People with ALS or cystic fibrosis or lupus, the list goes on and on, these people are never called fighters - they are always just referred to as having their illness.
Two people have used the word survivor with me now, one called me fellow survivor and one said I had a great survivor story. The thing is, to me, I'm not a survivor. What denotes a survivor? I haven't been cleared yet, I don't know what's in me or not (see first paragraph), I haven't even finished treatment. When I was at the Komen walk last year, they had the "survivor's tent". I stood there and wondered what the hell does that mean? Do you have to have a Dr's note saying you are cancer-free to be let in the tent? Do you have to be in remission for a certain amount of years? If you are in treatment, you aren't good enough to be let in the tent? If you relapse, are your tent privileges revoked?
When I first told people I had cancer, many of them told me I would "kick cancer's ass". (please, if you were one of them, I'm not singling you out, I'm just giving you my perspective, and my perspective has evolved as I've lived in this world). To me, and I know it's not meant to, but it sort of puts the onus on me right there - I need to battle this, fight this, kick its ass! And it's not just me, that's a common phrase used - I have a high school friend going through her second round of radiation now for a very uncommon type of nasal cancer - some of the comment's left for her by her friends tell her to kick cancer's ass. If this gets one of us, did we not kick ass hard enough? Were we not bad ass enough? Another friend from high school passed away almost eight years ago now from an exceedingly rare type of pulmonary sarcoma - she was an awesome person, very spunky, very bad ass - no matter how much cancer ass she kicked, it was likely not going to be enough. She didn't lose her battle, she didn't not fight hard enough, it just happened. There was nothing she personally could do that she didn't do.
I'm not even a fighter. I'm just doing the best I can with what I have, I'm doing the treatment that most everyone else does. Luckily my tumors responded to at least the A/C chemo. Did I choose to do the treatment where others may not have? Sure, but I don't know their situation and I have no right to say someone gave up or didn't fight because they chose not do do a certain treatment. The whole warrior lingo, the battling, I just don't like it. If someone doesn't make it does that imply they didn't fight hard enough? They didn't "kick cancer's ass" hard enough? They lost a battle? I know it's not meant with anything but the best intentions and I don't begrudge whatever words people want to use to make themselves feel better, but for me, these words leave a bad taste in my mouth.
Friday, March 8, 2013
There are no do-overs
I was a good student. I hated high school with a passion, but I loved learning. College was the best time of my life. Okay granted, it wasn't all about the learning that made it so great, but it was a big part of it. I was the weird kid who liked standardized tests, all through school, and going to Catholic school, we've had standardized tests every year since I can remember. Sure, I hated, absolutely hated, getting tests back. My low self-esteem and I were always convinced that we must have failed, even though that was rarely the case (let's just ignore my whole pre-cal year in high school and most of accounting in business school - thanks). For normal tests, you studied - at home, in school, with groups, alone. And even for big tests, like the SAT or some similar test, you had many a practice run beforehand. We practiced for months, studied, did the PSAT, etc etc - so could prepare as best as you did or didn't see fit.
However, I have, in the past 8 months, entered into a whole new world of tests - ones I can't study for, or practice for, or prepare for. And ones I can't do over.
In preparation for the big entrance to the world of radiation, I have another CT scan scheduled next week. CT scans, if I had perhaps a broken bone, or maybe an ovarian cyst, or even a kidney stone (which I have had and let me tell you, I know the pain is no joke) would represent a simple diagnostic tool. But when you have cancer, CT scans fucking suck. Because you don't know what is or isn't there until you take the test. Because you cannot change what the machine sees, no matter how well you prepare. Because what it sees can determine - let's be honest - whether you live or die. Because if there is something there I don't want to see - if I "fail" the test, I don't get to beg the teacher for a second chance, I don't get to explain that thedogatemyhomeworkIwassickIwasworkinglatelastnightmayIpleasetakethetestreadthebookdothepaperoveragain. Because there are no do-overs.
However, I have, in the past 8 months, entered into a whole new world of tests - ones I can't study for, or practice for, or prepare for. And ones I can't do over.
In preparation for the big entrance to the world of radiation, I have another CT scan scheduled next week. CT scans, if I had perhaps a broken bone, or maybe an ovarian cyst, or even a kidney stone (which I have had and let me tell you, I know the pain is no joke) would represent a simple diagnostic tool. But when you have cancer, CT scans fucking suck. Because you don't know what is or isn't there until you take the test. Because you cannot change what the machine sees, no matter how well you prepare. Because what it sees can determine - let's be honest - whether you live or die. Because if there is something there I don't want to see - if I "fail" the test, I don't get to beg the teacher for a second chance, I don't get to explain that thedogatemyhomeworkIwassickIwasworkinglatelastnightmayIpleasetakethetestreadthebookdothepaperoveragain. Because there are no do-overs.
Friday, March 1, 2013
Good day!
What a difference a day makes! What a wonderful day yesterday - this wonderful article came out in the OC Register, our local paper - http://www.ocregister.com/
Again, the kindness of people shocks and overwhelms me. I was fully prepared to have to stop reading the comments section of the article because there is usually some nasty person or people or many people writing something terrible - but the comments so far have been nothing but positive! SO great!
Back to a busy week next week, A-R's four month well baby appt, my appt with the radiation oncologist, and tax appt. Blech. Oh well, I think not enough appointments has left me too much time to think anyway - I need to be busy, it's much better for the psyche. Have a great weekend wherever you are - I will be busy trying to stay cool (hello cool winter/spring weather, please please come back).
Again, the kindness of people shocks and overwhelms me. I was fully prepared to have to stop reading the comments section of the article because there is usually some nasty person or people or many people writing something terrible - but the comments so far have been nothing but positive! SO great!
Back to a busy week next week, A-R's four month well baby appt, my appt with the radiation oncologist, and tax appt. Blech. Oh well, I think not enough appointments has left me too much time to think anyway - I need to be busy, it's much better for the psyche. Have a great weekend wherever you are - I will be busy trying to stay cool (hello cool winter/spring weather, please please come back).
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